tag:blogger.com,1999:blog-91456309319629109992024-03-05T10:03:32.349-08:00Coleson's CourageOne Family’s Journey Living with MPS I HurlersAnonymoushttp://www.blogger.com/profile/10901667187660195423noreply@blogger.comBlogger104125tag:blogger.com,1999:blog-9145630931962910999.post-87676703256564384902018-10-19T16:07:00.003-07:002018-10-19T16:07:45.681-07:00Answers Come in Many Different WaysWe went to Minneapolis seeking answers and at first I felt like we weren't getting any, but by the end of the trip, I realized we really had after all.<br />
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First let me not leaving you all hanging in regards to Coleson's surgeries. His ear tube surgery went well, though we were delayed an extra hour in the pre-op room which to an already "nervous" patient just adds to the anxiety. He didn't want to put on the gown but was very good all the way to the operating room. He was only going under the gas mask as far as sedation so there were no pre-meds. I held on to him as they put on the mask which he immediately began to fight. Despite the Dr.s asking what "flavor" the patient wants the mask to be, nothing is worse than the smell of that gas! I got quite a bit myself as I was trying to hold on to him. And worse, the smell sticks to you like glue so I got wiffs for the rest of the day. Coleson woke up extremely sad and mad and almost on cue started pulling out his IV line and EKG stickers. He said how scared he was of the mask which I couldn't blame him for and I just dreaded having to do it all again the next day.<br />
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As per his usual "MO", he recovered quickly and we were off to Crayola Experience for a few hours of making colors come to life. I almost thought we weren't going to fit this important activity in with the added surgeries but this would have made him more mad than the surgeries themselves!<br />
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Though I would have rather been able to "plan" for the leg surgery, I guess the one good thing about it being more of an emergency was that I didn't have much time to dread it. It also helped make some of our decisions in regards to "where" and "when" we were going to do it and if we were going to try to get his port out at the same time. After using the sterile soap to wash two nights in a row and getting very little sleep, 5:00am came and we were off to the hospital again. The one thing I love about these hospitals is that they understand Hurler kids and how much they go through and they do everything they can to try to make it as easy as possible on the kids. For instance, I knew Coleson was not going to put on the gown and allow us to wipe him down with the sterile wipes. I knew if he saw a mask that he would get superman strength and fly off the bed so fast.... so they didn't make him do any of that. Instead we hooked his line up to his port, gave him some meds to put him to sleep and then they took him back. I don't think he even knew what was about to happen. He had 1 1/2 hr MRI first and expected about another 1 1/2 - 2 hrs to remove the plates. Right on schedule, he was done about 11:00. Dr. Walker said he did really well, no complications and there did not appear to be any infection but that it would take 48-72 hrs for the cultures to grow to know for sure. So we got settled into our room. Coleson was in a lot of pain but didn't seem to complain about the surgery. It was almost as if he knew that the Dr. was fixing his legs again and that he knew he would be able to walk again soon. I feel like he grew up a little during this trip... his birthday was October 4th (7 years old, can you believe it?) and he just seemed "older".<br />
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Paul and I were contemplating different scenarios of how we were going to get back home if Coleson ended up needing to stay as the Dr. wanted us to. Paul had a work trip he needed to fly out on Monday morning and I wouldn't be able to keep Peyton with me at the hospital, but the thought of trying to fly home with Coleson was intimidating as well. I just hoped that Dr. Walker would release us on Saturday, which he reluctantly did after I pleaded my case and his cultures showed no sign of infection yet. I was so ready to come home for many reasons, including the weather. I was really looking forward to a mid-west fall but what we got seemed like winter instead. It rained almost every day we were there, hovering between the 30s and 40s and I did not see the sun once! We got home late Saturday night only to find ourselves locked out of our house. Apparently we had another big rain storm on Saturday knocking out our electricity and wiping out our garage entry. I won't tell you how we finally broke in but it was dark, cold and the kids were scared on top of the pain Coleson was in.<br />
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Coleson wasn't able to walk at all on Sunday but by Monday he was starting to stand and as the day progressed he took a few and then even more steps. By Tuesday he was getting around by himself fairly well. He went to school on Wednesday and even though the plan was to pick him up after a couple of hours, he lasted the whole day. They get out 2 hrs earlier on Wednesday anyway. By today he was ready to get back to his usual Friday routine of going to soccer after school, but his legs still need 6 weeks to heal so we will be cutting out soccer and gymnastics until January. <br />
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As mentioned in the beginning of this blog, we went to Minneapolis seeking answers to some of our questions and I felt like we had not really received any answers in regards to continuing his weekly infusions, and his surgeries but I guess we did after all. Part of our consideration was whether we were going to stop ERT and try to get his port out with his leg surgery (so we could reduce the number of surgeries) but with that no longer being an option, I feel like there is no rush now to get his port out. And if we aren't getting out, we should continue to use it, which means we will continue ERT. We spent a lot of time talking about Coleson's GAG levels. GAG is the gunk that builds up in the body due to the missing enzyme which impacts the skeletal and organ development. Coleson's GAG levels are fairly low, even within normal range for someone without Hurlers. What I didn't understand and learned this trip is that this is the GAG level that is in his blood cells and with him having a BMT, you would expect the cells would have a normal GAG level. What it isn't measuring is the amount of GAG in his joints, organs, etc. which could only be achieved through biopsies. With this new realization that we really don't know how much GAG is still in his body and that ERT only helps try to get rid of this, we will continue ERT until new information suggest otherwise or Coleson starts to put up a fight about it.<br />
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<br />Anonymoushttp://www.blogger.com/profile/10901667187660195423noreply@blogger.com0tag:blogger.com,1999:blog-9145630931962910999.post-62003579826592012582018-10-09T14:48:00.001-07:002018-10-09T14:48:23.954-07:00Expect the UnexpectedYou would think we would have learned this lesson well enough by now (to expect the unexpected) as it seems like every time we come for checkups, something unexpected pops up. This trip it was 2 unexpected surgeries that popped into our schedule just during the first day of appointments. We started with the typical lab work and BMT clinical visit. No surprises here, though I was hoping for more guidance on whether we should continue weekly ERT, there is just not enough data out there to lead us in either direction. So we are left to contemplate this important decision on our own. This was the only expected part of our day. <br />
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We then went had neurology. I guess if I were keeping better records it would be 3 unexpected add-ons to our schedule. Neurology added a full spine MRI to his existing brain and cervical spine MRI just to rule out any neuro related issues affecting his toe-walking and wetting problems. I really think the toe-walking is related to his hip/femur surgery but I guess having a full MRI does have its benefits. I didn't count this as an additional item since he was already scheduled for an MRI already. <br />
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We then headed over to Gillette's to see Dr. Walker, his ortho surgeon. He is healing very well from his hip/femur surgery, however, it appears the bracket on the left leg is starting to come through the other side of the bone and it appears cloudy around the top part of the bracket that sticks into the bone which may indicate an infection. The screws also look like they may be coming loose so long story short, we decided it best to remove the brackets as soon as possible which happens to be this Friday. Normally, this would't be that big of a deal as we knew we had to get the brackets out eventually but there is an "unknown" to this equation in that we don't know for sure if there is an infection and if there is, what kind it is and whether or not we will have to be admitted to the hospital for overnight or even longer. Normally the bracket removal can be outpatient but he won't know until he sees the bracket/bone on whether he wants to start him on IV antibiotics or not. You would think if there was an infection that he would show other symptoms such as a fever but then again this is Coleson and he is a good "hider". He rarely shows clinical symptoms. So we asked for his MRI to be moved to this hospital so we could avoid back to back sedations or so we thought.<br />
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Then we went to Audiology and ENT. We actually got mixed results during his hearing test. His left ear has improved from last year, while his right ear has worsened. Traditionally his left ear was worse than his right but the right tube is still in but seems to be plugged which is affecting his hearing.... so when we saw ENT right after, he suggested we put in new tubes in both ears. So we scheduled this for Thursday. Unfortunately these are 2 different hospitals so we can't do this all in 1 shot. But tubes are fairly quick and are a light sedation so I guess that gives me a little relief. Coleson is going to hate having these back to back but I am hoping praying that this is it for him....<br />
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Today we got confirmation of his ADHD. This is pretty typical in all MPS patients no matter what type so they were going to provide us with better tools to implement into his IEP at school to hopefully help while we contemplate medicating. The only other thing we had on the schedule was his bone density and DEXA scan which requires him to lay still for 4 minutes. We haven't been successful doing this in prior years. <br />
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Tomorrow is Endocrine and ophthalmology. We hope to get more clarity around his thyroid medication with Endocrine and don't know what to expect from ophthalmology. Will try to update as we learn more. Anonymoushttp://www.blogger.com/profile/10901667187660195423noreply@blogger.com0tag:blogger.com,1999:blog-9145630931962910999.post-43890910296439589842018-10-03T09:52:00.000-07:002018-10-03T09:52:10.867-07:00It's All Relative...<br />
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<span style="font-family: "calibri";">Wow – where do I even begin?! Maybe with an apology
for leaving everyone hanging for the past year…. It wasn’t my intention
but for several reasons, I just never found time to update my blog.
It was a very busy year but also somewhat “normal” relatively
speaking.<span style="margin: 0px;"> </span><span style="margin: 0px;"> </span>I will try to briefly summarize it below:</span></div>
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<span style="font-family: "calibri";">We survived the remaining two weeks of Coleson’s
braces with relative ease. I stress the word “relative” as having a 5
year old in braces during the summer isn’t easy at all. I do have to
gloat for a minute about my son (as if I don’t always)… he did not complain <b><u>AT
ALL</u></b> during the 5 weeks he was in the braces. Outside of the
initial pain of surgery and the catheter, once we made it back home he was a
trooper. However, I don’t think we prepared him well enough for the first
few days once we got the braces off. We kept telling him that he would be
able to walk and run again, but we failed to tell him that it would not
immediately after getting the braces off. Needless to say he was quite
confused and scared when we took the braces off and he couldn’t walk and we
handed him this contraption (walker) to use. It didn’t take him long
though (probably 2 weeks) before he was up and walking around and by the time
school (Kindergarten) started (August 3<sup><span style="font-size: x-small;">rd</span></sup>) he was walker free. </span></div>
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<span style="font-family: "calibri";">Fast forward 1 year and he is now a 1<sup><span style="font-size: x-small;">st</span></sup>
grader. Completely blew over his Kindergarten year.<span style="margin: 0px;"> </span> We still have some residual side
effects of the surgery. His feet are a little turned out (apparently, due
to his abnormal bone growth, his tibia is rotated out on his left leg).
His left leg is also ½ in shorter than his right leg and so he has to have a shoe
lift. Unfortunately, it isn’t one that goes in the shoe therefore we have
to have it mounted on the bottom of each shoe, costing $170 a shoe!
Fortunately, he is a boy and doesn’t have a big shoe wardrobe. None the
less, it is a pain to deal with. And he has developed into a toe
walker.<span style="margin: 0px;"> </span>The ortho surgeon failed to
communicate that we should watch out and try to prevent this from
happening.<span style="margin: 0px;"> </span>The feet are definitely an
underappreciated body parts.<span style="margin: 0px;"> </span>So we have
added daily stretching to our routine.<span style="margin: 0px;"> </span>Otherwise
medically speaking we are contemplating stopping the weekly Enzyme Replacement
Therapy and also considering timing of getting the hardware out of his femurs
as well as contemplating removing his port. I am also starting to
suspect he has ADD or ADHD based on his short attention span and lack of
focus. He is a really good kid but struggles a bit with following
directions the first time and staying focused on task. I used to chalk
this up to being a 6 year old boy but after talking to some friends, I am
starting to question whether or not there is something else at
play. We skipped going to Minneapolis this summer as I
thought we could all use a break but I have come to the conclusion that we have
to go. I have too many questions that just can’t wait. I have
to say Coleson was pretty upset when he learned we were not going to
Minneapolis this summer, which says a lot that he remembers more of the fun we
have than the Doctors appts and hospital visits. He wants to go to
Crayola Experience and Mall of America. So we will be jetting off on his
birthday and as an extra fun surprise we are going to stay at the Great Wolf
Lodge the first weekend. We will move into the RMH for the work week so
that we can navigate all of the medical appointments. He did have a
significant anniversary this summer, his 5 year transplantiversary. I
can’t believe it has been over 5 years already but am grateful for every
year! He is in gymnastics and hip hop and started boy scouts this
year. He is taking after school soccer and golf (which Paul is happy
about). Not sure how long he will be able to do any of these sports so am
encouraging him to do all he can while he can. </span></div>
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<span style="font-family: "calibri";">Peyton continues to be a great big sister and just a
great person overall. I admire her big heart and though I do get nervous
that it can easily be broken, I appreciate how thoughtful and caring she
is. She is almost 9 already, being only 3 when Coleson had his transplant
and only 5 when my dad passed. Both events having a significant imprint
on her.<span style="margin: 0px;"> </span>Thankfully she is a good student
and is very respectful of rules and teachers. I rely on her to
counterbalance the worry I have with Coleson. I don’t take her for
granted though as I know she still needs my attention and quality time.
She picked up cheerleading last year which is a perfect sport for her due to
her nature of supporting and encouraging others. She is the “tumbler” on
the squad being able to do both back and front handsprings. She is still
in gymnastics and we added hip hop as well as Girl Scouts to the mix. Are
you starting to understand why I am so busy? She had her first “major”
(well to her it was Major but again, it’s all relative) surgery the first day
of summer after falling on the slide in our pool and cutting open her
chin. She has severe anxiety when it comes to pain but after numbing the
area and 9 stiches later, she was showing off her injury and recounting how
brave she was. </span></div>
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<span style="font-family: "calibri";">We suffered another death in the family this past
November (just before Peyton’s birthday) with my Grandma passing away at 102 ½
years of age. After 100, the ½ years become relevant again!
She had a stroke and briefly regained consciousness but died within 2
days. My sisters and I spoke at the funeral remembering all of her great
qualities and all of her “hidden” tissues which she pulled out at the first
sign of a sniffle, a tear or a dirty face! When we cleaned out her
apartment we discovered lots of these tissues hidden in sleeves, pants pockets,
etc. Enough to fill a trash bag. </span></div>
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<span style="font-family: "calibri";">Part of the reason why we have been so busy is that
we ended up buying a new house (in Tempe) while we were in Minneapolis… sight
unseen. We had been considering moving to a bigger home in our
neighborhood (really just one with a bigger yard) and the prefect one came up
for sale about a week after we left for Minneapolis. Thanks to great
neighbors and friends and FaceTime (not to mention timing), we cut our
Minneapolis stay 2 weeks short and signed a week later. Thankfully Rachel
had been in between jobs and helped pack up our house and the Ranch. Yes,
with this purchase, Paul had made the dissection to sell Rancho Costa
Lotta. I know it wasn’t an easy decision but he swears he doesn’t regret
it. It is an end of an era but we are making our new home just as unique
and special to our whole family. It has a big back yard with an awesome pool
(with a big slide and waterfall) and we have had more get togethers here
already than we had at the old house, including a surprise birthday party for
Paul!</span></div>
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<span style="font-family: "calibri";">Paul got a new job (at Honeywell) in July. He
is getting back into Sales where he spent most of his career. I think
this is more his calling and although he is selling a different product line to
different end users, you can see he is enjoying it. Believe it or not, I
am celebrating my 20<sup><span style="font-size: x-small;">th</span></sup> anniversary at Honeywell. My job has
undergone some recent changes as well and I am finding more balance in my life
as a result. We also celebrated our 10<sup><span style="font-size: x-small;">th</span></sup> wedding anniversary
this past August. I used to tease Paul before we were married how his
life changed once he met me, but wow, the past 10 have been eventful! I really
hope the next 10 are a little more relaxing. I’m sure Paul will be
retiring in that time so it should be for him at least. </span></div>
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<span style="font-family: "calibri";">I will post again once we get through our week in
Minneapolis.<span style="margin: 0px;"> Oh, and I will try to find time to update pictures. </span>Wish us luck (on both)!</span></div>
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><span style="font-family: "calibri";"></span>Anonymoushttp://www.blogger.com/profile/10901667187660195423noreply@blogger.com0tag:blogger.com,1999:blog-9145630931962910999.post-71031150782597470552017-06-11T08:41:00.000-07:002017-06-11T09:24:55.437-07:003 Down, 2 to Go!Weeks until braces off that is... <br />
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At least according to Leo the Ninja Turtle that is. Leo is our official holder of our countdown chain (an idea from a good friend and Hurler dad, Todd. Leo was a gift from his friend Eli. It is a cardboard cutout and stands 6 ft. tall. He not only makes a good chain holder but also can be used as an anti burglary device as well! (Think "Home Alone" style).<br />
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Coleson seems to be holding up fairly well, both physically and emotionally. I think his emotions are following a bell curve (can you tell I'm in business) as he is starting to ask more frequently about the number of days. Not unlike my state of mind when I was running marathons... you start off thinking 1 mile down 25 to go, a milestone so far off that you don't even want to watch the mile markers... you ask yourself, why am I doing this again? Then you find your rhythm and you zone out for a while and you think, "I got this... Now I remember why I'm doing this", I feel great like I can do and achieve anything! Then you hit mile 20 (the "Wall") for some and you again start asking, "Why am I doing this again?". Self-doubt on being able to finish the last 6 miles sets in, you start to feel pain in various places in your body. You start rationalizing that you've already run 20+miles and isn't that a big enough accomplishment... no one will know if you walk the rest of the way in... the miles are counting down quite as quickly as they were before... But before you know it, you look up to see that you are already at mile 25...and you get your adrenaline back... but that last mile.2 feels like the prior all of the previous 25 miles combined. Somehow the additional .2 feels like so much more. But alas you cross that finish line and later you can reflect on the entire race and soon enough similar to giving birth without any meds, you think... that wasn't too bad, I can do that again! I don't think Coleson will ever want to go through this again, but hopefully he will come to the same conclusion that this wasn't so bad and he can accomplish anything!<br />
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We are finding ways to get through the days/weeks. Thankfully we have quite a few friends both work and fellow Hurler families here. We've been to the RMH a few times for bingo and hanging out with the other Hurler families. They changed the BMT protocol for Hurler kids a couple of years ago to replace a couple of the harsher chemo drugs in lieu of a couple others that are less invasive on the body. However it seems like the kids are having a harder time keeping the transplant and many are finding that they have to go through 2 BMTs and other complications. There is a family from Michigan here right now who adopted their Hurler boy and he is on the brink. I can't even say (or write) what he is on the brink of because it is too hard. The mother sent out a FB plea to the birth mother (whoever she is) to connect with her so that perhaps he can receive an immediate donation of a sibling or from her just so he can survive. They aren't even worried about the Hurler syndrome gene at this point. It is heartbreaking. It is families like these that make me grateful for what I have and how relatively speaking, Coleson has run his marathon with relative ease. <br />
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We still have a few more appointments to go, Endocrine, Spine Ortho and Wrist/hand Ortho. I already know his TSH levels are going up so I think he will need an increase in his thyroid meds. I hope that we continue to get good news from the other ortho docs as we have in prior years. Then finally we get the braces off and start physical therapy. <br />
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I am looking forward to going to Prince's Paisley Park in a couple weeks with another Hurler family. I was a huge Prince fan in Jr. High/High School! Minnesota has so much to offer! However today it offered us a hail storm this morning and a possible tornado this afternoon. I don't mind the storms but don't like the prospect of riding out a tornado in the basement. Peyton is already preparing what she will take down with her if a watch or warning pops up. She wants to bring all of her clothes, games, stuffed animals, etc. with her! I tried to convince her that buying new clothes wouldn't be all bad if we had to. She wasn't buying it! She gets so attached, she doesn't want to see anything get "lost". <br />
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Meanwhile today is going to be an indoor day which gives me time to post, organize pictures on my computer and do other things that I never find time to do as we don't get too many "indoor" days in Arizona and even if we do, there are too many other things to do around the house. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXBaAM6kXRfYnCadAz2V0gGBWmhhJKMtKygb8XXe8PFpttAzHmsGsV57jh9_gr7v1MmNm2xm2WgsqAe2g6hyBP3yBCmJPDQBxXN0fgCtTBgDsE4JXNMdlce5s3yT3hivh-FzVYpbebM2CT/s1600/008.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXBaAM6kXRfYnCadAz2V0gGBWmhhJKMtKygb8XXe8PFpttAzHmsGsV57jh9_gr7v1MmNm2xm2WgsqAe2g6hyBP3yBCmJPDQBxXN0fgCtTBgDsE4JXNMdlce5s3yT3hivh-FzVYpbebM2CT/s200/008.JPG" width="150" /></a>Oh, and today is my sister, Beth's, 40th birthday! Talk about someone who has run a marathon... well I guess she "wheeled" her way through it. She has defied the odds... Happy Birthday Beth! Also, my grandmother turned 102 in May. Another women who seems to be running a marathon!</div>
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<br />Anonymoushttp://www.blogger.com/profile/10901667187660195423noreply@blogger.com0tag:blogger.com,1999:blog-9145630931962910999.post-6245256416842523042017-05-30T06:40:00.000-07:002017-05-30T06:42:10.152-07:00I've Got That PowerAfter 9 hrs. of surgery and only 3 nights recovering in the hospital we were able to bring Coleson home on Friday, a whole 4 days earlier than expected. I am biased but my kid has super hero strength to recover from surgeries.<br />
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Monday evening's "talk" about the surgery was uneventful. Peyton and I told him that his hips were not formed correctly and the Dr. needed to fix them and he would be in a wheelchair afterward. Peyton had twisted her ankle on Monday and was hoping on one foot and she thought she needed x-rays and possibly a wheelchair as well so she explained that to him as well. Tuesday's drive to the hospital reminiscent of last years drive, albeit a different route and this time all of us went. The pre-op routine was very familiar, as we've experienced this at least 15 times before between surgeries, MRIs, ear tubes, etc. This time though, they access his port and but the happy time cocktail in his port in a stealth like fashion which also had the benefit of having almost instant impact. He immediately started to smile and act goofy but he didn't fall asleep so alas I had to "suit up" in the paper jumpsuit and mask and make the uncomfortable walk to the OR room. The walk to an from where you try to fight back the flood of tears that are begging to flow out. If you've never seen an OR room, it is what I can only describe as "eerie". It feels like a cold garage, made sterile and filled full of medical gadgets, instruments and machines and of course the bright lights. <br />
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It was a long 9 hrs. but the nurse called us every few to let us know everything was going OK and as more time past the better as that indicated to me that they were able to proceed with all of the surgeries. There were actually 6 procedures, the cutting of the femurs and drilling the plates to secure the pieces together, shaving off part of the pelvic bone which would be used as the wedge that was needed for the hip socket and then the actual cut in the hip socket to make it more round by placing t previously cut hip bone into the now vacant space in the socket. As Dr. Walker explained to us after the 9 hr. day, there were only 2 minor issues but otherwise the surgery went perfectly. The first was that one of the electrodes that were placed into Coleson's skulp had inadvertently came loose and ended up poking the anesthesiologist which meant both Coleson and the anesthesiologist had to have their blood testes to see if Coleson had any viruses or otherwise communicable diseases. He also had to have 1 pint of blood but that is pretty typical. <br />
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Reminiscent of last year, Coleson again demonstrated his superhuman ability to rebound from surgery. He was on quite a bit of pain medicine with a self controlling pump that would administer addition pain meds as he needed. A 5 year old obviously cannot be responsible for administering his own pump so the nurse asked if I would like to do it or have the nurses. After not sleeping for 2 nights already, I was in no shape to be making those types of decisions. I could barely form intelligible sentences at that point. So I signed off on having the nurses do it the first night. Coleson was very anxious every time he woke up that night and I went from trying to sleep on the couch to the chair to eventually in his bed with him. Fortunately we are both small enough to do that and the hospital allows that. It's been really cold and rainy here in Minnesota since we have arrived and the hospital room was pretty cold so snuggling up to him kept me warm. <br />
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Coleson wasn't very happy every time he woke due to the cast that ran from his thighs and covered his feet, the catheter and all the IVs in him. He also doesn't like the EKG stickers nor the pulse ox that is stuck to his toe to measure oxygen levels. As true Coleson fashion, he started lobbying to get things "out" and "off" every chance he could get. He was able to get one of the IV lines out of him that was used to measure his blood pressure during surgery. He had to wean off the pain pump and take meds orally to be able to get much of the rest off and out. Well Coleson never needed more than 1 additional "pump" that first night and was comfortable with just the normal dosage of pain meds/relaxers every 4 hrs. So by mid-day Wednesday we shut off the pump. The Catheter could be removed 6 hrs. after this happened but I said we might as well wait til the morning since that would put us in the middle of the night. He had tried to pull on it several times and with his strength and will power I was afraid that if he found the opportunity, he would pull it right out. He also started asking to go to the bathroom. Another milestone a patient has to achieve before getting released. He was pretty scared of the wheelchair like potty that he had to use since the casts prevented him from using a real potty. However we were able to coax him into it which is a process when you have casts on both legs but to no avail. I was hoping for a little more sleep that night but Coleson was determined to go to the bathroom and get the cath out. He couldn't wait til morning so it seemed we tried every hour throughout the night. Finally at 2:00am, we had achieved the necessary "wait" time after the pain pump was shut off and the removed the cath. An hour later he finally was able to go to the bathroom. Another milestone achieved. <br />
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The next morning the Drs. came in and said they would be fitting him with his braces that day. A day earlier than expected! I started thinking that we could actually get out of here before spending the whole Memorial Day Weekend in the hospital. So we started the process of removing the casts and getting his new blue braces and his wheelchair was delivered so once we were done with that we were able to take him out and about. He had also started taking his pain meds by mouth instead of IV so he was only getting the saline in his IV. Another milestone achieved. More lines came of him, he was mobile (wheelchair assisted) and now we were just waiting to be released. I was able to sneak away on Thursday afternoon for a few hours to shower while Aggie, Paul and Peyton stayed with Coleson. They took him outside and our friends Tasha and Braden along with Tasha's mom, Betty, came for a visit. Braden is 12 and has Hurlers too. We met them our first year here in 2013 during BMT. He also was getting this same surgery.. .again. Braden has been through variations of this surgery twice before and was back again this summer. I can't imagine going through this again and hope that we do not have to.<br />
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The next morning we got the fabulous news that Coleson could go "home". I put it in quotes as we are renting a place here so it really isn't our home but it is a "home" none the less and much better than being in the hospital. The release process always takes a while but by noon we were heading out of the hospital just as Aggie arrived back in Michigan. Paul had dropped her off at the airport on Friday morning after a quick visit with us. <br />
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So we were able to enjoy Memorial Day weekend at home, learning how to take care of our boy who can't bend his legs. He is not enjoying his wheelchair but we brought a big running stroller with us and his seems to like that better. The weather still isn't cooperating much but we have had a few hours of sun so that we could take him outside and play for a while. We have to do some Range of Motion exercises with him 4x a day so his legs don't get too stiff which he doesn't mind since we have to take the braces off. He has weaned off all meds already. I didn't think we were going to get released from the hospital until now and he is already off all his pain meds! <br />
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So it is back to work and reality with some adjustments to our normal life and we anxiously await June 26th when we return to the Dr.s to remove the braces and start to learn how to walk again! I think the song that Coleson likes to sing, "That Power" (I've got that Power) sure applies in this case as Coleson certainly has some time of Power to endure surgeries and hospitals and Dr.s time and time again. <br />
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<br />Anonymoushttp://www.blogger.com/profile/10901667187660195423noreply@blogger.com0tag:blogger.com,1999:blog-9145630931962910999.post-41943313809144211172017-05-22T15:12:00.000-07:002017-05-22T15:12:18.486-07:00Here We Go Again!One of Coleson's favorite songs to sing and dance to is "That Power" or as he calls it, "Math Power" by Will.I.Am. He mistakenly sings the refrain, "Here we Go, Here we Go, Here we Go Again", which is kind of how I felt talking to Dr. Walker, the orthopedic surgeon who will be performing 1/2 of Coleson's surgery tomorrow (this procedure takes 2 surgeons working at the same time). Hopefully this time it will "Go" as planned and we will be on the other side of this in about 24 hrs. from now. Probably about the same time you all are reading this. <br />
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Sorry this is my first posting since we have arrived but we had a summers worth of fun to pack in before today and that is exactly what we did. What does that look like you ask... well it entails a whole day each dedicated to our favorite places starting with the Edinborough Indoor Play Park and Gym on Tuesday, 7 hrs. of amusement park fun at Nickelodeon Universe on Wednesday, 5 hrs. at Crayola Experience on Thursday, 5 hrs. of waterpark fun on Friday and a trip to Minnesota's Largest Candy Store and 3 hrs. at Dave and Busters on Saturday. Fortunately or unfortunately, the weather was cold and rainy all last week so we didn't feel like we were missing the outdoors at all. We are however done with all the indoor fun and would like nothing but sunshine the rest of our stay. Yesterday I picked up Grandma early in the morning from the airport and we had a much needed day to recoup before we started into this week.<br />
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As far as all of his appointments went last week, we had nothing but "stable" news, which is kind of the best you can hope for with Hurler kids. We started off with our favorite of the bunch, a visit to Dr. Miller at the BMT clinic and then to Pulmonary, Cardiology and lastly Audiology. Both Pulmonary and Cardiology said he is looking really good and Audiology said his hearing tests have improved from last year slightly but still some mild to moderate hearing loss particularly in the right ear. Of course, all of these clinical visits require a battery of tests, labs, EKGs, Echo, X-rays, vitals, etc. which Coleson hates to do but he handled most of them like a champ. We still have endocrinology, spine and hands and wrist Dr.s left which will all be post surgery.<br />
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So the day has come that I have to break the news to Coleson that we have to go back to the hospital yet again tomorrow but this time there will be "owies". Sill not sure what I am going to say or when but I am sure I will find the strength somehow. I don't think there is any better way to do it so that it won't make him sad and scared so it probably doesn't matter what I say but that I just make sure we give him as much love as possible when I do it. Peyton of course has been a big help at all the Dr.s appointments especially today for the x-rays which took quite a bit of encouraging for him to do. He did not want to lay down on the table for the hip x-ray as I am sure he associates laying down with surgery. <br />
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So as you read this, I am hoping we will nearly be out of surgery and that I will soon be following this up with good news. We could still use all your thoughts and prayers and appreciate all of them we have received along our journey thus far. Anonymoushttp://www.blogger.com/profile/10901667187660195423noreply@blogger.com0tag:blogger.com,1999:blog-9145630931962910999.post-46115819706224727842017-04-06T19:52:00.000-07:002017-04-06T19:52:02.268-07:00We Have a Date!
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<span style="font-family: Calibri;">For surgery that is...I was both elated and felt my heart sank all at the same
time when after 5 months of weekly harassing two different Dr.s offices, I
heard the news that Coleson was finally approved for surgery. Elated as
it meant that his skull and spine surgery of last summer was dissipating the
syrinx in his spinal cord and anxious as it meant we would soon be leaving for
Minneapolis to have the bi-lateral pelvic and femoral surgery (the one he was
supposed to have last summer). The only date that we was available at
that point was May 23<sup><span style="font-size: x-small;">rd</span></sup> unless we waited to mid-July. It means
leaving 2 weeks earlier than had hoped and missing Coleson’s pre-school
graduation but also 2 weeks more of recovery before he starts
Kindergarten. Peyton of course does not mind one bit that we are taking
her out of school a week and a half early. It also means I will be
narrowly missing a visit from one of my best friends, Christina. I am
hoping that we have less Minneapolis visits in the future and maybe we can
actually take a family trip to California. Coleson is so excited to go to
Minnesota… fortunately for now he associates positive experiences with
Minneapolis. I hope this summer doesn’t change all that. The
hardest part for me as a mom is not the actual surgery itself as that is up to
Dr.s and higher powers, and all of you help get me through the day, but it is
telling him that he has to have surgery and what the recovery entails… cast,
braces, pain, etc. Harder this year than last as he has “grown up” so
much this past year and is just so much more “aware”. Of course, I won’t
tell him until probably the day or two before and won’t go into all of the
details but I need to prepare him that he will be in a wheelchair for a
while. Fortunately, Peyton does know and they have discovered a new iPad
game called Roblox which has a game that takes place in a hospital and you can
have your characters play doctors and patients and get casts and be in
wheelchairs. She is such a good big sister and is teaching him that it’s
OK to have surgery and be in a wheelchair through this game. Sometime you
have to appreciate technology! Speaking of how grown up my kids are
getting, Coleson still loves to sing but has matured his play list from Twinkle
Twinkle and Wheels on the Bus to more a more eclectic collection. He
loves to sing and dance to “Just Dance” videos on YouTube. From boy
bands, (“Best Song Ever”) to classics and 80s like (YMCA, Final Countdown) to
Pop like Katy Perry (Dark Horse), to Black Eyed Peas (“I’ve got the
Power”). However, I think our theme song this year is “Fight Song” by
Rachel Platten. He really belts out this one. </span></div>
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dy2G4pNCdY5lRO-Pd5F_uZfMGrPhx1L2YNBKFbgRymcz3rbQJqtgcCn3j5R1lBDEVlvRrPCnKZ6gi4lLl1mJg' class='b-hbp-video b-uploaded' frameborder='0'></iframe><span style="font-family: Calibri;">You might have noticed that this is my first blog entry in a
while.<span style="mso-spacerun: yes;"> </span>Life has been just so “normal”
for the past few months which has been a welcome relief. Let me see
if I can recap the past 6 months:</span></div>
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<span style="font-family: Calibri;">I continue to develop my career at Honeywell. My team is
constantly growing in size as a result of organizational changes. My team
is over 40 employees now and I continue to expand my responsibility into more
processes. As the saying goes, the one constant is change and I can
attest to that! I have been getting back into running but have no
ambitions to run marathons again. I also do Zumba and Pound at the gym.
We have gotten more involved with local organizations like HopeKids AZ which is
a non-profit that provides free fun events for families with kids with terminal
diagnosis. As there are only a handful of other MPS families in the
family, we have really appreciated being a part of a bigger organization and
are enjoying meeting other families who are going through similar experiences.
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Paul also continues to expand his career at Honeywell. He was promoted
last summer and now is responsible for a global team which means he is back to
traveling overseas. His most recent stress reliever is refurbishing his
’72 Corvette. I can’t remember when he first started this project but our
garage was starting to bulge out with 3 cars and an entire car’s worth of
parts. Fortunately he made great progress and many parts are back into
the car including the wheels and engine and in fact the entire car is at the
paint shop getting its original Bryer blue paint. </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlyozdouBGG27mDOdKvMoJWO_bt7vl3uI0Ge9VGeA9NG3yfeg6hc8MnfKm1n5b8VQp39lzdzm3cpViiEYZI3zyTkfgWOuU2_5dJ96ITl2aUjgRQcrz2ddEVIATWrC1ltMU5u7Uy4xBCfgq/s1600/011.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlyozdouBGG27mDOdKvMoJWO_bt7vl3uI0Ge9VGeA9NG3yfeg6hc8MnfKm1n5b8VQp39lzdzm3cpViiEYZI3zyTkfgWOuU2_5dJ96ITl2aUjgRQcrz2ddEVIATWrC1ltMU5u7Uy4xBCfgq/s320/011.JPG" width="240" /></a><span style="font-family: Calibri;">Peyton is still doing well in school, although she would
prefer to stay home and play all day. She continues to enjoy gymnastics and
also added violin, acting and drawing classes this year. She dropped
dance as ballet was not her style.<span style="mso-spacerun: yes;"> </span>She
is much more a contemporary and hip hop dancer and gets lots of practice
alongside Coleson with the Just Dance videos. She also spends probably
too much time on her iPad mostly playing Minecraft or Roblox and watching
YouTube. She also can’t seem to walk without doing a cartwheel, a summer
salt or some other parkour type of move. She is older than her years and
continues to be best big sister with the biggest heart. She loves all
animals, literally won’t even let me swat flies, and wants to be a pet sitter
when she grows up. I’m thinking this is more of a teenage job for her
instead! I definitely don’t think she will follow in our footsteps into
the business world. She is such a free spirit and has a knack for the
stage and an audience so she may go in a completely different direction! </span><div style="border-image: none;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhe-QeEq8SI5xG-kcOkpj-reSQiAYghFQPUOrk3X76YwKJy_8Goxw5THEg_qEFBhyphenhyphenAf1CGKECmqYBPVow19KqY0BERtQhdlFYjCTHXobDfhLsFp6pIJcD3zM-Jjgwx70lYJ2iRk4CWMnz7h/s1600/021.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhe-QeEq8SI5xG-kcOkpj-reSQiAYghFQPUOrk3X76YwKJy_8Goxw5THEg_qEFBhyphenhyphenAf1CGKECmqYBPVow19KqY0BERtQhdlFYjCTHXobDfhLsFp6pIJcD3zM-Jjgwx70lYJ2iRk4CWMnz7h/s320/021.JPG" width="320" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2hJAlD2EHfOXZ-iNRXbK2lXF3BfQJV-kwqqRFnZIUdsL53-ZVOH_olJ_DFIF0E4xEOZIt76s-PJ_fVOSeBSSvP3qjTHb7HrblW1YUM1RnQ_c4GvG0ppr8cf7iKqG2ZcLd3OXZS_UMzxYA/s1600/011.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2hJAlD2EHfOXZ-iNRXbK2lXF3BfQJV-kwqqRFnZIUdsL53-ZVOH_olJ_DFIF0E4xEOZIt76s-PJ_fVOSeBSSvP3qjTHb7HrblW1YUM1RnQ_c4GvG0ppr8cf7iKqG2ZcLd3OXZS_UMzxYA/s320/011.JPG" width="320" /></a><span style="font-family: Calibri;">As mentioned, this was a big year for Coleson as far as just
“growing”. He still swims like a fish and even dives down to collect
items off the pool floor. He still enjoys gymnastics and KTR (a parkour
type of gym). He is graduating pre-school after 3 years of the same
school/teacher and transitioning to Kindergarten at Peyton’s school. This
will be a big transition for him. I have been having the regular IEP
meetings with the school and he actually is scoring in the average range for
almost all of the disciplines. In fact the only service he will be
getting next year is speech and I think this is mostly due to the fact that he
hasn’t had his upper 4 teeth since he was 2! Hard to say “Fs” and “S”s
with a window in your mouth. Of course, we don’t know what to expect his
recovery to be like after surgery and we may have to add on Physical Therapy
for a while. He wants to be a doctor, a firefighter or a construction
worker. I think he could also be a baker as he and Peyton both love to
bake! Cupcakes are their specialty. </span></div>
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<span style="font-family: Calibri;"> </span></div>
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<span style="font-family: Calibri;">We have added a new addition to the family this year, our
Yorkie Terrier mix, Bella. She is a rescue pup who was rescued from a
kill shelter in Texas. She is the most people loving pup but a bit
protective of us around other dogs. I am taking her to training so we can
train her to be more mindful and give her more appropriate puppy social
skills. Everyone that interacts with her agrees she is the just the best
puppy. We really did luck out with her. </span></div>
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<span style="font-family: Calibri;"> </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1SO_Nkp-pN-eme-8voMeol6gKHyMbLaaKxr7MF_cnjKZThe3q0g3V_BK7SLaCR5nt7hnCRnZ45SEa480TsWu5S-1xpzovqykGdM8Ek4cU7JUtpQwxrhdstjV6RcqeOtc-3kwUudJftVak/s1600/052.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1SO_Nkp-pN-eme-8voMeol6gKHyMbLaaKxr7MF_cnjKZThe3q0g3V_BK7SLaCR5nt7hnCRnZ45SEa480TsWu5S-1xpzovqykGdM8Ek4cU7JUtpQwxrhdstjV6RcqeOtc-3kwUudJftVak/s320/052.JPG" width="240" /></a><span style="font-family: Calibri;">We have had a change with our nanny situation. Rachel
graduated and took a full time job in an old care facility. Fortunately
she works afternoons/evenings so she is still able to come in the mornings and
help get the kids off to school. I don’t know what we’ll do next year
when hopefully she gets a job on the management side of a care facility and
probably will work more “regular” hours. We did find a college student,
Jaclyn who has been coming in the afternoons. She has been a fun
(youthful) addition to the family. </span></div>
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<span style="mso-ascii-font-family: Calibri; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi; mso-hansi-font-family: Calibri; mso-hansi-theme-font: minor-latin;"><span style="font-family: Calibri;"> </span></span></div>
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<span style="mso-ascii-font-family: Calibri; mso-ascii-theme-font: minor-latin; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: minor-bidi; mso-hansi-font-family: Calibri; mso-hansi-theme-font: minor-latin;"><span style="font-family: Calibri;">Will
continue to update as we start our travels.<span style="mso-spacerun: yes;">
</span>Thoughts and prayers are appreciated.</span></span></div>
</div>
Anonymoushttp://www.blogger.com/profile/10901667187660195423noreply@blogger.com0tag:blogger.com,1999:blog-9145630931962910999.post-19168817982430738352016-08-17T07:04:00.000-07:002016-08-17T07:04:39.157-07:00Back to Reality<div style="border-image: none;">
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<span style="font-family: "calibri";">We are back to Arizona and back to “normalcy” (whatever that
means)! Things didn’t go as planned this summer but I think they went as
God intended. We ended up having a really good summer (minus the few
hospital days) packed full of friends, family and fun. In fact, so much
fun that the kids were completely bored returning to the 115 degree weather
here in Arizona. They are constantly asking to go to, “more fun
places” and “what friends are we going to see next”? I knew we were
spoiling them but knowing what next summer is going to be like, I wanted to
make sure that Coleson especially looks forward to going to back to the “blue
house”. </span></div>
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<span style="font-family: "calibri";"> </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYYPTN6C-GY8Tnx7FTLi2k7DePx0A14mRlZYp8qUAY9M8Fo3uiAfqv8iAJmLSFH3TtcZj2INgYUOxdnXIrcgQGt7xfOQ2LaynLDq2qO30vg_afG6QlUqO0RSnT-iriI1k-4tQwEY6SxN9O/s1600/018.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYYPTN6C-GY8Tnx7FTLi2k7DePx0A14mRlZYp8qUAY9M8Fo3uiAfqv8iAJmLSFH3TtcZj2INgYUOxdnXIrcgQGt7xfOQ2LaynLDq2qO30vg_afG6QlUqO0RSnT-iriI1k-4tQwEY6SxN9O/s320/018.JPG" width="240" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg21bCp5JwUP17gjN3A6FDqzpuF02L6EyjxtJe6GbUzA9SxAv7-ra4omIDRczMtPCFp0wlIk9d_GUpGCPiqrLygTSaFVjeurtbILfM1pNQHdeNCOa0EOqeGLeOilhrNzsuZPsgsfVFOJELg/s1600/006.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg21bCp5JwUP17gjN3A6FDqzpuF02L6EyjxtJe6GbUzA9SxAv7-ra4omIDRczMtPCFp0wlIk9d_GUpGCPiqrLygTSaFVjeurtbILfM1pNQHdeNCOa0EOqeGLeOilhrNzsuZPsgsfVFOJELg/s320/006.JPG" width="240" /></a><span style="font-family: "calibri";">The kids are back to school, Peyton in 1<sup><span style="font-size: x-small;">st</span></sup> and
Coleson in Pre-K. Coleson loves to go to school while Peyton tolerates
it. The song, “Girls Just Wanna Have Fun” was written for
her. She can play hard all day long but going to school for 7 hrs. is not
much fun (except for recess/lunch times). I try to remember
what I was like at her age and life was very different for me at age 6.
It always is from generation to generation but at the age of 6 my mother had
been gone for 2 years and my dad had just met Aggie. I can tell you my life was
not about going to “the next fun place”. Both kids have decided to
focus on gymnastics this year and rock climbing for Peyton. Peyton and I were watching the Olympic
Gymnastics and swimming events and I asked her if she thought she could do that
one day. True to her big heart she said, “If I were beating someone, I
would stop to help them so we could both win”. She is going to be the
best kind of friend. With her big heart though comes big sadness when
saying goodbye to friends and family or getting her heart hurt easily and I
dread her teenage drama years. </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDYiI8unhSCvjUxGthbTOux0o_3t8Cx0FGZGv2q6Fn8MnKYM2uRCwaGeZlKf930OIuFhu2U-1vm6K8pUku-dsdCWO1LdaOk2-kyT4NsHHzy8rfXb8p337MTa1yqQpkPecuXq9krCpzWDTD/s1600/004.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDYiI8unhSCvjUxGthbTOux0o_3t8Cx0FGZGv2q6Fn8MnKYM2uRCwaGeZlKf930OIuFhu2U-1vm6K8pUku-dsdCWO1LdaOk2-kyT4NsHHzy8rfXb8p337MTa1yqQpkPecuXq9krCpzWDTD/s400/004.JPG" /></a></div>
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<span style="font-family: "calibri";"> </span></div>
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<span style="font-family: "calibri";">Coleson has rebounded from surgery and is becoming just as
dare devilish as Peyton. He wants to go on roller coasters and water
slides, he’s flipping into the pool. This makes me more nervous because
he doesn’t understand his limitations yet...which is good in some ways but not so good in other ways. He makes me nervous for Kindergarten when he is with a
bigger population of kids. He is enjoying gymnastics and school and
is doing quite well in both. We have a few appts. coming up, his
repeat sedated MRI to see if his surgery was successful and if he will be
approved for next year’s surgery as well as ENT. We can never get a good
audiogram on him since his ears are constantly draining from his tubes. I
know the ENT wants to remove his adenoids but I am really trying to prevent
another surgery. I’m hoping as he gets bigger the drainage will reduce in
his ears. He went through a bout of ear infections before we left for
Minneapolis but now they just drain occasionally.
Otherwise all of his other appts. went well. Cardiology said she wouldn’t
even have known that his heart was a “Hurler heart”, and
pulmonary went well too. Ophthalmology said his eyes are holding steady
with a slight near-sidedness, retinal atrophy and astigmatism, but as long as
they are stable he is doing well. He is still 100% engrafted with donor
cells at 3 years out and I expect will remain unchanged. He is developing
at a more age appropriate level in almost all areas but is still behind in
gross motor skills (the test doesn't ask about flipping into pools!) so we need to continue with therapies. They also
mentioned we need to work on his attention span and focus so it doesn’t start
to impact his schooling. His spine looks great with only a 17% kyphosis
in his lower back and his neck still looked really good (minus the cyst in his
spinal cord). All in all, we received very positive results in almost all
areas. Most Dr.s said they did not need to see him again next year which
is good because it is going to take all we have to make it through the pelvic
and femur surgeries and I don't want any additional stress on him. </span></div>
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<span style="font-family: "calibri";"><br /></span></div>
<div style="border-image: none; margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">I turned 1 year older this summer and got to celebrate it three times, 1x in MN, 1x in MI and 1x in AZ. I think it's official now! Paul has resumed working on his corvette and parts are actually starting to go back into the car as opposed to out. Soon tires will be put back on and it will sent out for nice new paint job. </span></div>
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<span style="font-family: "calibri";">As mentioned, we had a great summer full of friends, family and
fun in both Minneapolis and in Michigan. I appreciate and thank all of
you who came to visit, had us over, took us out, let us store stuff, just had
fun with us. We didn’t get to see everyone we intended to see as we still have
to work while we are there. We really missed seeing some of our other BMT family that we typically get to see but we did get to spend some time with
some other Hurler families this year and that was nice too. </span></div>
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<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";">We are about to kick off the busy Fall season full of
holidays and birthdays.. more fun times filled with friends and family. Thanks for being part of our journey. </span></div>
Anonymoushttp://www.blogger.com/profile/10901667187660195423noreply@blogger.com0tag:blogger.com,1999:blog-9145630931962910999.post-81054058625659422692016-06-05T19:25:00.000-07:002016-06-05T19:25:01.576-07:00Surgery, What Surgery?!For those of you on Coleson's Facebook page, some of this will be repetitive, but I tend to be more detailed in my blogs than I am on FB. For those not on FB, I apologize for the lack of updates. I actually tried to post on Thursday but blame it on the lack of sleep, that I wasn't successful.<br />
<br /><br />
<br />
<br />
You would never know by Coleson's behavior that just 5 days ago he was in a very risky and lengthy surgery! Aside from the stiff neck and the stiches (roughly 30) that resemble Frankenstein, he has not once complained of pain and has been running around playing since Thursday when he was released. Yes, he was released on Thursday morning, a full 2 days earlier than expected much to his delight and amazement from the surgeon and his physical therapist. I'll back up a few days for you all.<br />
<br /><br />
<br />
<br />
Surgery, Suboccipital craniectomy with C1 laminectomy and dural splitting (trying saying that 3 times fast!), went extremely well, just as it was supposed to. Coleson was both scared and mad to awaken to all the IV lines in his hands/arms and feet and promptly starting requesting they be removed. We had a bit of a scare on Tuesday night as he was striderish meaning his airway was swelling from being intubated. They had to administer steroids to reduce the swelling. By Friday morning he was breathing good but had a "silent seizure" where his heart rate dropped and he was unresponsive. My heart rate did just the opposite as I pleaded with him to say something. It lasted only a minute (but to me it seemed like forever) and came out of it. They thought it was due to coming off the sedation meds and fortunately he did not have any more. He drank a whole bottle of ensure for me and after a couple of hours of being stable, they started removing most the IVs and moved us to the recovery floor. Oh the memories of being cooped up in these rooms for months during transplant. Fortunately the Children's recovery wings are new (I'd say 5 years old) and they are very nice...for hospital rooms. After being stable for a few hours on the recovery floor they removed the last IV, he still had his port accessed and a big bandage on his arm where his arterial line was. He was fairly cranky until Peyton arrived to cheer him up with Ninja Turtle Playdough. His whole demeanor changed as they played together. About 6:00pm, his physical therapist asked for us to try to get 30 minutes of unsupported sitting that night. So at 7:00, we asked if he wanted to sit in his special blue chair, which he loved to sit in when he was here for BMT. He sat and played with us for about an hour and then he was feeling frisky and wanted to stand up/walk. He needed to get weighed anyways so we walked him over to the scale. He didn't stop there, we opened up his door and walked up and down the hallway. This lasted for another hour for a total of 2 hrs of unsupported (neck) movement. I was feeling confident that we may get released a day early at this rate. He had only been on Tylenol for pain most of the day.<br />
<br /><br />
<br />
<br />
He was adamant he was not going to sleep in the hospital bed that night (it's too scary) and fell asleep on the couch (my bed) a little after 9:00. After allowing what I hoped was enough time that I could move him without waking, I picked him up and laid him down on the bed...I didn't wait long enough! He began to get upset and I laid with him for another hour about no more pokes. The thing about sleeping at a hospital is they have to come at shift change and do vitals and then again at 4:00am. (A practice that is being challenged by the medical industry as being disruptive to the healing process and I hope gets changed in the future). At this point any single type of status check was scary to him and he know if he was in that hospital bed, they would be in to touch him. He stayed asleep until 3:00am when he woke and cried for me. I promptly moved into bed with him again and had another 1 hr. talk about how scary the hospital is and his "inside" owies and that he was done with the hurt part and he just had to get strong enough to go home. I called the nurse to come do vitals early and give him his meds since he was awake and I could help him through it. I had just gotten back to sleep it seemed when he woke for the morning at 6:00. "Is it daytime?" he asked, he knew day time meant possibly going home, even though I knew we had at least 1 more day. He was again pretty cranky, not wanting to do anything but go down the elevator... "go down 2 elevators mommy", he says, knowing that it takes 2 elevators to get to the car in the parking garage. "No up elevators", he's too smart! Daddy showed up at 8:30 and somehow convinced him to get out of bed and walk the hallways. Within 30 minutes, the neurosurgeon saw him walking around and with a look of surprise asked if was ready to go home which Coleson promptly answered, "Yes!" Paul said the physical therapist also did a double take when she saw him and was amazed he was up and walking. It was Coleson's sheer determination and fear of the hospital. He was not about to stay in that hospital any longer than necessary, and I don't blame him. I too was exhausted from 3 nights of no sleep and anxiety and wanted to get home too. Paul says it was all his and Coleson's plan as he knew it was Paul's night to sleep at the hospital. At any rate, he was a free man and he returned to his normal happy self. He even said to my friend Nicole who had stopped by to see us and helped us carry our things down to the car, "Thanks for riding down the elevator with us and thanks for carrying our bags". Where did that come from?! <br />
<br /><br />
<br />
<br />
Since returning home, he as been as joyful and funny as normal. He has not slowed down at all and we spent all day exploring the train museum and science museum on Saturday. It was rainy so a good museum day. Today we went to Nicole's for lunch and friend time. Then we stopped for "Izzy's Ice Cream" an awesome ice cream joint near our place which reminds of our good friend Issy from Phoenix. Then to Choo Choo Bob's for some toy train play time. Even after all that he was not ready to come home but after too full days, Paul and I were ready. <br />
<br /><br />
<br />
<br />
We return to somewhat of a normal life again, we have all his usual appointments to contend with over the next several weeks but the only one that will require a "procedure" is the EKG. I would ask them to skip it but with my own heart condition, I can't risk it. Otherwise, they drew all the blood they required (which is like 13 vials) and I asked the spine surgeon to get the scans from Dr. Walker. Us Hurler parents get to be pretty savvy at "combining" and "reusing" tests for his other specialists. <br />
<br />
We have a couple Hurler family friends arriving this week and will try to see them as well. I'll update again as we get through the upcoming appts. <br />
<br /><br />
<br />
<br />
I can't thank everyone who supported us over the past 2 weeks. It makes such a big difference, I can't even put it into words. A simply Thanks doesn't seem enough but that is about all I can give as well as letting you into our personal world. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgq1XR6nP0yHkJ2z6x8qYDNVX_kGndzIYJqfMqTtc9LJLHv3VDz3xsTwnmjzF53w3zL7hIxxKgJ91fXAcc0VUdTRh9F3di7gBYoviHL_RhL3qmqR0NArmNVUbs56U75XYFaqw1Pxft0hOWR/s640/blogger-image-677021924.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgq1XR6nP0yHkJ2z6x8qYDNVX_kGndzIYJqfMqTtc9LJLHv3VDz3xsTwnmjzF53w3zL7hIxxKgJ91fXAcc0VUdTRh9F3di7gBYoviHL_RhL3qmqR0NArmNVUbs56U75XYFaqw1Pxft0hOWR/s640/blogger-image-677021924.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Paul says' Chicks will dig this scar when he's older! This chick hopes it disappears!</td></tr>
</tbody></table>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmlVpJUI6qa5fl-2Cv1yjn4Dq0le5qFIa3GdXOnpfN60R-2VHPji0B7d7txFkb_fUgaSStQ4_jkSC15CYV467DhB4-CMcvRnGEA7qpAGCImubzNcB5RxR1HFZu9FT4U8eH4XA0W3uCZd1N/s640/blogger-image-1672928188.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmlVpJUI6qa5fl-2Cv1yjn4Dq0le5qFIa3GdXOnpfN60R-2VHPji0B7d7txFkb_fUgaSStQ4_jkSC15CYV467DhB4-CMcvRnGEA7qpAGCImubzNcB5RxR1HFZu9FT4U8eH4XA0W3uCZd1N/s640/blogger-image-1672928188.jpg" /></a></div>
Anonymoushttp://www.blogger.com/profile/10901667187660195423noreply@blogger.com0tag:blogger.com,1999:blog-9145630931962910999.post-40094346866578923892016-06-01T04:49:00.001-07:002016-06-01T04:49:12.314-07:00Quick UpdateSurgery went well and after 7 1/2 hrs., we were able to see him again. He's in pain, swollen in the neck from the intubation tube and neck from the surgery. His airway started to close a little last night so we were watching him closely but he's paste the worst of it now. He's scared mostly as he's worried there are more pokes and owies to come. He's got IVs in both feet and one in his artery in his right hand which is boarded up to protect it. Hopefully we'll get released from the PICU today to be moved to the general surgery recovery floor. We are watching Team Umi Zoomi (reminiscent of BMT days) and he drank a little apple juice. I'll post more details later. Anonymoushttp://www.blogger.com/profile/10901667187660195423noreply@blogger.com0tag:blogger.com,1999:blog-9145630931962910999.post-69531086602569819082016-05-26T12:18:00.001-07:002016-05-26T12:19:15.006-07:00New Surgery, New Plans, New AttitudeHOne of the hardest parts about this process is the complete loss of control over the well being of your child. You get hit with this overwhelming information, just enough to fill you with anxiety but not enough to put all the plans in place or put you at ease. Once you have all the information you start to take comfort in the "game plan". I feel like that is where I am at today. <br />
<br />
<br />
We met with the neurosurgeon yesterday. There was no denying once he threw up the pictures of the MRI that the cyst exists and is big. Even to my untrained eye I knew immediately where it was and that it was big (I'm sure you will see it too in the picture below). He explained the root cause of the cyst was due to a malformation of the skull which creates a "pooling" of spinal fluid in the base of his skull. This in turn creates and imbalance of fluid flow along the spinal chord and brain. Think of it as a river, and his skull in creating somewhat of a dam which affects the rest of the flow of the river (aka his spinal chord) which causes other "pools" to form along it. Fortunately it is only the 1 and there are not others. Bone malformation is one of the most common Hurler traits and is the reason for the hip surgery. Hurler Syndrome is a "storage" disorder meaning substance (called gag) that should get processed and expelled by the body rather does not and instead stays in the body in places where there is room, mostly the joints. Because this gag material is sitting in places where bones would normally develop, it causes the bones to develop abnormally. It is a total body affect but each Hurler kid's bones develop different depending on where most of the gag goes in the body and in Coleson's case it had a big affect on the skull. <br />
<br />
<br />
It is big enough that they need to address it. To fix it, they have to break down the dam so to speak. So next Tuesday, the 31st, he will have surgery to remove some bone at the base of the skull which will allow the fluid to stop pooling in the skull which naturally (over the coarse of a year) should reduce/eliminate the pooling in the spinal chord. It is too dangerous to do surgery on the cyst itself as that would be require surgery on the spinal chord. We will be back at the University of Minnesota for this surgery so back to our normal stomping grounds. I asked if this surgery could be combined with a new port placement and was happy at least to hear that it could be and in fact is scheduled with the same general surgeon who put in in his central line 3 years ago. It does mean another 6 hr. surgery and 4 night stay in the hospital but at least he will walk out of the hospital. We have some follow up appts and MRIs over the next year but we should be able to plan the hip surgery for next summer. <br />
<br />
<br />
Though I was hoping he would not have any more "Major" surgeries after the hip surgery, I guess, technically, this isn't after the hip surgery. It is unexpected and a risky procedure itself, but it allows Coleson another year to comprehend the hip surgery which may not be a bad thing. It does mean another traumatic and scary experience for Coleson however and though I was hoping as he got older, he would just "get used" to all the pokes, prods, medicines, IVs, X-rays, EKGs, MRIs, echos, blood pressures, pulse ox..... you get my point, I think he is getting more afraid of them. We will have to take extra care in tackling each procedure as simple and nonintrusive as it may seem to be. <br />
<br />
<br />
So we have some re-arranging of plans left to do but it also allows us to get home around mid-July instead of at the end of July so that we can get settled before school starts on August 1st. I do believe that everything happens for a reason, so while I still don't know the reason why kids are born with such difficulties, I do believe we were not yet ready for the hip surgery and needed another year to prepare.<br />
<br />
<br />
After the appt. yesterday, we all went to Mall of America and spent 6 hrs. riding rides. Paul and I even got to ride the adult rides for once since Grandma was with us watching the kids. Peyton is still not big enough to ride those yet but maybe, just maybe by next year she will be. She can't wait. Coleson too loves the excitement of the stomach turning rides and unfortunately will have quite a few more years before he will be big enough to ride them. <br />
<br />
<br />
So think of last Tuesday as a trial run for this Tuesday and next year. The outpouring of support has really kept me going these past couple of days and I cannot thank you all enough for that. <br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFL2hksypc8vpXDmSy60Q5atHpLU1UGCHyhCR37VM1McTO2EZeaX4YGQtQywyx6anbKAwa6qRAv3PN9XfzoPYpKvwGhyphenhyphenBsLVOJ0lCuZoLVd0PzPArzTfVRIikZa79s0fnhHtLg0H8xnv4o/s640/blogger-image--983253731.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFL2hksypc8vpXDmSy60Q5atHpLU1UGCHyhCR37VM1McTO2EZeaX4YGQtQywyx6anbKAwa6qRAv3PN9XfzoPYpKvwGhyphenhyphenBsLVOJ0lCuZoLVd0PzPArzTfVRIikZa79s0fnhHtLg0H8xnv4o/s640/blogger-image--983253731.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The white is the pooling fluid and the "dam" where the skull meets the chord.</td></tr>
</tbody></table>
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Anonymoushttp://www.blogger.com/profile/10901667187660195423noreply@blogger.com0tag:blogger.com,1999:blog-9145630931962910999.post-16218684889214819572016-05-24T14:17:00.004-07:002016-05-24T14:17:51.306-07:00It's What's on the Inside that Counts!I was hoping to start this entry with news of a successful surgery today but as one Hurler mother recently said, we need to be prepared to expect the unexpected. I thought I had accounted for the unexpected by reserving a house for the summer but nothing prepared me for the events over the last 24 hrs. <br />
<br />
We had a relatively uneventful first couple days getting settled here in our temporary home. Our place is nestled in a very nice neighborhood with a park 3 blocks away. Our landlord is very accommodating and has a girl close in age to Peyton who only lives 1 block away. Dairy Queen and a very nice local grocery store are within 3 blocks, the river across the street. The weekend weather was gorgeous and without the distractions of every day life, we actually were able to relax on Sunday. <br />
<br />
The knots in my stomach didn't start to occur until we were on our way to the pre-op apt on Monday. Coleson did well during the Child Life discussions and started out being a big boy for the x-rays but after 3 of them started to melt down and I had to help him through the other 4 or 5. Our consult with Dr. Walker went really well and I was actually feeling very confident about the surgery. The last item of the day was to get labwork. We started off in the lab, which we found out could not do lab draws from his port. We have not tried an non-sedated blood draw since he was first diagnosed and didn't even want to try. So we went back up to the Dr.s office for a nurse to do the draw. After about 15 minutes and several pokes and prods, they were unable to get a blood return from the port. There must either be clotted blood around it or a collapsed vein, regardless it needs to be replaced. Next they brought in a PICU nurse to try an entry into a hand or foot. By this time, Coleson had already had enough and even with 4 us holding him down, the nurse could not get a needle in a vein in either hand. So they called in "Dee Dee" who for sure would be able to do it. So again with the attempts but now on his feet. Again we all had hands and legs secured and he was lying in my lap with me shielding his chest holding his head and he still wiggled and whaled rendering any attempt useless. For a 4 year old with Hurler's he has superman strength! We had to get the blood draw so they could get the right kind of blood (with the proper antibodies) prepared for today's surgery. So Plan D was to use nitrous. After 3 hrs and with the help of nitrous they finally got enough blood. It was a horrible experience and not the way I wanted to start this surgical procedure. <br />
<br />
Today actually started off better, except for the complete lack of sleep for me, Coleson didn't mind the 5am wake up call and immediate bath with the special soap (which we also had to do last night as well). He didn't start to get nervous until we were in the parking garage and refused to get out of the car. However, once we got into the waiting room and play area, he was OK. He was even OK up to the point that they masked him for his MRI. Prior to the MRI, Dr. Walker said based on the X-rays that he consulted with a neurologist and they thought his neck was strong enough to perform the surgery as intended, with the femurs being done while he was facing down on his belly and then the hips with him lying on his back. Last night we had talked about doing the entire procedure on his back, though a little more complicated for the surgeon, less risk for the patient. This I felt was actually good news and was looking forward to getting this behind us.<br />
<br />
We didn't receive the bad news until Dr. Walker came out after the MRI to give us an update. I knew something was wrong when he wanted to talk to us privately. He reassured us immediately that Coleson was OK but that the MRI revealed a cyst at the base of his brain on his spine. This cyst was putting pressure on the spine and it would not be safe to perform the surgery. The cyst, though currently was presenting no signs it was there externally, would need to be taken care of before it started to effect his balance and cognitive ability. The next hour was overwhelming and all I wanted to do was to hold Coleson again but they wanted to perform more MRIs to ensure there were no other cysts. Fortunately there was no more. But now we are facing another surgery, plus we need to get the port replaced and who knows what will come of the leg/hip surgery. <br />
<br />
On the outside you would never know that Coleson even needed any surgery. He climbs like a champ and even started doing flips in the pool. He is super smart (ask him anything about the planets) and his communication is even maturing. His latest IEP was good in every area. But on the inside, you never know what exists and with a Hurler kid, it could be just about anything. It's a total body condition and each kid presents differently. So, another challenge for us and for him.<br />
<br />
Two of my closest friends sent me this same message (separately coincidentally), "You never know how strong you are until being strong is the only choice you have." I have never had a choice to be strong, it started when I was 4 and lost my mom. I feel like life has challenged me in so many ways it is the only choice I have and I will continue to be. I've said this before but it remains true, I can only be this strong with the love and support of friends and family and yet again, you all pulled through for me today. Our appt. with the neurosurgeon is tomorrow (today by the time you read this) and I'll hopefully have a better idea of what our new plans will be. <br />
<br />
Continue the prayers and wishes and this truly is hard on Coleson who knows enough to be scared but not enough to believe everything will be OK. I really am concerned for his mental well being along with of course his physical well being. I'll update as soon as we know more. Anonymoushttp://www.blogger.com/profile/10901667187660195423noreply@blogger.com0tag:blogger.com,1999:blog-9145630931962910999.post-84679298135630666132016-05-03T18:42:00.003-07:002016-05-03T18:42:38.735-07:00Help Support MPS Research with Triple Match Now - 3 Weeks til Surgery<div style="margin: 0in 0in 0pt;">
<span style="font-family: "calibri";"><span style="color: black; font-size: small;"><span style="font-family: "verdana" , sans-serif;">Its 3 weeks and counting until Coleson’s surgery. Each
day brings more and more anxiety. I recently learned that a young girl
who had the same surgery as Coleson cannot feel anything from her chest
down. Her surgery was more than 10 days ago. This is the
risk/reality that we face when we send our kids back to the operating room and
wait for 6-8 hrs. and then even longer for them to wake up from sedation and
try to wiggle their toes. My heart sunk when I read the update and
I cannot express the sorrow I feel for Brynlee, her brother and her parents.
I know they have not given up hope yet that she will regain feeling and so if
you feel so inclined to pray or send a good thought to them, I know they could
use the support. There are quite a few families having the same surgery
this summer, but I think Coleson is the next in line, and I know all of us are
diligently waiting for updates as each one occurs. Brynlee’s mother
posted a saying, “<b><i>Sometimes the best thing you can do is not think, not
wonder, not imagine, not obsess. Just breathe, and have faith that everything
will work out for the best.”</i></b> If she can live by this, then
I should be able to as well.</span> </span></span></div>
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<span style="color: black;"><span style="font-family: "verdana" , sans-serif;"><b>With that said, there is a great opportunity to support
MPS research (something that doesn’t get a lot of attention) and have it</b> <b><span style="font-size: 14pt;"><u>TRIPLE MATCHED</u></span>. If you ever have
thought about donating to MPS Research this the time, triple matches don’t come
often! Triple Match ends this Saturday.</b></span></span></div>
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<span style="font-family: "verdana" , sans-serif;"><span style="color: #333333; font-size: 10pt; line-height: 150%;"><span style="color: black;">
Donating to #TeamMPS is easy! There are three ways to help us reach our $50,000
goal. Remember, all donations are triple matched, so a $10 donation becomes
$30!</span></span><span style="color: #333333; font-size: 9pt; line-height: 150%;"> </span></span></div>
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<li style="color: #333333; font-size: 9pt; font-style: normal; font-weight: normal;"><div style="color: black; font-size: 11pt; font-style: normal; font-weight: normal; line-height: 150%; margin-bottom: 0pt; margin-top: 0in; mso-list: l0 level1 lfo1; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; tab-stops: list .5in;">
<span style="color: #333333; font-size: 10pt; line-height: 150%;"><span style="font-family: "verdana" , sans-serif;">Text the word "courage" with a donation amount to
41444.</span></span></div>
</li>
<li style="color: #333333; font-size: 9pt; font-style: normal; font-weight: normal;"><div style="color: black; font-size: 11pt; font-style: normal; font-weight: normal; line-height: 150%; margin-bottom: 0pt; margin-top: 0in; mso-list: l0 level1 lfo1; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; tab-stops: list .5in;">
<span style="color: #333333; font-size: 10pt; line-height: 150%;"><span style="font-family: "verdana" , sans-serif;">Donate through Penn Medicine to </span><a href="http://mpssociety.us1.list-manage.com/track/click?u=191692f93c05585a3a8b323f7&id=1c6f279f7a&e=761134e1bb" target="_blank"><span style="color: maroon;"><span style="font-family: "verdana" , sans-serif;">#TeamMPS.</span></span></a><span style="font-family: "verdana" , sans-serif;"> - This is
the best way so you can learn more about MPS and this </span></span></div>
</li>
<li style="color: #333333; font-size: 9pt; font-style: normal; font-weight: normal;"><div style="color: black; font-size: 11pt; font-style: normal; font-weight: normal; line-height: 150%; margin-bottom: 0pt; margin-top: 0in; mso-list: l0 level1 lfo1; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto; tab-stops: list .5in;">
<span style="color: #333333; font-size: 10pt; line-height: 150%;"><span style="font-family: "verdana" , sans-serif;">Donate through </span><a href="http://mpssociety.us1.list-manage.com/track/click?u=191692f93c05585a3a8b323f7&id=bf63cf13d5&e=761134e1bb" target="_blank"><span style="color: maroon;"><span style="font-family: "verdana" , sans-serif;">PayPal.</span></span></a></span></div>
<div style="color: black; font-size: 11pt; font-style: normal; font-weight: normal; margin-bottom: 0pt; margin-top: 0in;">
<span style="font-family: "verdana" , sans-serif;"> </span></div>
<div style="color: black; font-size: 11pt; font-style: normal; font-weight: normal; margin-bottom: 0pt; margin-top: 0in;">
<span style="font-family: "verdana" , sans-serif;">May 15<sup>th</sup> is MPS Awareness Day. So please
wear your purple in Coleson’s honor. I’ll be updating this blog
frequently over the next several months as we climb this next mountain.</span></div>
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<div style="color: black; font-size: 11pt; font-style: normal; font-weight: normal; margin-bottom: 0pt; margin-top: 0in;">
<span style="font-family: "verdana" , sans-serif;">Here is a flashback from 3 years ago of Peyton Singing the "Brave" song for Coleson during BMT.</span></div>
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<span style="font-family: "verdana" , sans-serif;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dyOiB6QFzY2-P9o1qisfs1iHC-PfpRILEdqY_bAC3GNgxHEBmQSQgWt19ykPEZS44wEZifI6Z62WQ2GTaSo_g' class='b-hbp-video b-uploaded' frameborder='0'></iframe></span></div>
<br />Anonymoushttp://www.blogger.com/profile/10901667187660195423noreply@blogger.com0tag:blogger.com,1999:blog-9145630931962910999.post-63925750896304072822016-04-20T07:58:00.001-07:002016-04-20T07:58:23.695-07:00The Countdown Begins (30 days & counting)
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<span style="font-family: Calibri;">30 days until we leave for Minneapolis and 34 before Coleson
has his surgery (May 24<sup><span style="font-size: x-small;">th</span></sup>). Coleson will be having 4 surgeries
in 1, double pelvic and double femur osteotomies. The pelvic osteotomy is
to correct a “shallow” socket that if left uncorrected will eventually lead to
the femur “ball” slipping out of socket. The femur osteotomy is to correct the
alignment of his femurs into his hip socket. Two surgeons will operate on
him at the same time and the surgery is expected to last ~6 hrs. It
is a high risk surgery and one that all of us hurler parents dread, though
almost all hurler kids have to have it done. It is high risk as they are
cutting into the femur (which is where bone marrow originates) and so there is
potential for lots of blood loss. In addition, there is potential for
nerve damage due to the length of the surgery and the short necks and spinal
curves our kids. Needless to say, I will need all of your thoughts and
prayers that day (May 24<sup><span style="font-size: x-small;">th</span></sup>) as it is an excruciating wait. Feel free to send texts/facebook posts/emails, etc. that day as
it will be a good distraction from staring at the clock. He is expected
to be in a spica cast for at least 4 weeks and then we start physical therapy
and rehab. We are planning to stay in Minneapolis for the summer just in case anything goes wrong and to ensure he is well on his way to recovery as well as go to all the other annual appts. So Minnesota friends, we'll be in touch. I hope to get to the office there a few times as well. </span></div>
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<span style="font-family: Calibri;">Otherwise we have been enjoying the winter/spring here in
Arizona relatively healthy. Coleson has been battling chronic ear
infections for the past 2 months. We went to a new ENT and he suctioned
out the blockage in his ear tubes. Hurler kids tend to have thicker
ear secretions and the antibiotic drops weren’t able to penetrate through it to
clear up the infection. Coleson didn’t like the suctioning at all but I could tell
a noticeable difference in his behavior afterward. He is a happy go-lucky
kid in general but he was even more spirited afterward. The ENT did plant
that seed that we may need to look at removing his adenoids. I am not in
favor of having any unnecessary surgeries so hoping this won’t be
necessary. Peyton too has been fairly healthy with the exception of a
cold/ear infection that happened to occur when my sister and niece were
visiting. I haven’t had any major ailments lately myself (knock on wood)
however Paul came down with a serious case of bronchitis a couple weeks
ago. He was in bed for several days and we even took a trip to the
ER. by habit I almost drove to Phoenix Children's hospital. It's been a long time since I've had to go to an adult ER! He is still recuperating but is expected to feel the effects for
another couple weeks. Had a bit of a scare last week when Rachel called
me from the park to say that Peyton fell off the monkey bars and wasn’t
moving. Luckily I had just taking a CPR and first aid class and was able
to run through the checklist to assess the situation. Fortunately she was
breathing, just needed to calm down, and she didn’t have a concussion, but did
have a sore back for a day or two. </span></div>
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<span style="font-family: Calibri;">We have been enjoying the warm weather, plenty of pool time,
gymnastics and dance. I took Peyton on her first hike with some good
friends and after our second hike, I think she has had enough. Just not
exciting enough for her… she takes after me, I’d rather be on a bike on a
mountain rather than my legs. Speaking of bikes, Peyton is proud of her
newest accomplishment, riding her bike without training wheels. She
didn’t like riding it much with the training wheels so it didn’t get a lot of
use. One day she got on a neighbor's smaller bike without training wheels
and figured out she could do it. So we took them off her big bike and away she
went! The bike gets a lot of use now. She has even rode it to
school a couple times. Coleson continues to be a climber, climbing anything
and everything including the pantry and his closet to pick out his shirt for
the day. He is particular in what he likes/doesn’t like and that includes
what he wants to wear. We took the kids to a place with warp walls
and trampolines and he did great! He even somehow got up on the big warp
wall (perhaps someone helped him). He escaped the "6 and under" area
without me knowing and when I couldn’t find him, my eyes raced around the gym
and spotted him way up at the top of the big walls. I really hope this
surgery doesn’t set him back too far. He is so adventurous and
agile, it’s hard for me to think in just 1 month, he will be in a
cast and wheelchair. </span></div>
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<span style="font-family: Calibri;">I’ve been trying to stay as healthy as possible with my
eating and my workouts. I’m been trying to get to Yoga or Zumba 4-5 times a
week. Paul can “handle” the kids now at night on his own so it allows me
to get to the gym. It’s amazing how much better I feel and how much more
energy I have. The kids have starting waking up earlier than usual (not
sure why) and fortunately I’ve been able to adapt. It’s amazing how much
more I can accomplish with an extra hr. in the morning. </span></div>
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<span style="font-family: Calibri;">Lastly, I took 66 lbs. of pop tabs to recycling this weekend for the RMH. This is in addition to the nearly 100lbs from last fall. The RMH will certainly appreciate this donation. If anyone else has any pop tabs, please let me know. </span></div>
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<span style="font-family: Calibri;">I'll probably be publishing some frequent updates for the summer as we tackle this next journey. Thanks for reading! Here are some recent pics and videos.</span></div>
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Anonymoushttp://www.blogger.com/profile/10901667187660195423noreply@blogger.com0tag:blogger.com,1999:blog-9145630931962910999.post-9784797192681555472015-12-11T13:03:00.001-08:002015-12-11T13:03:32.571-08:00Happy Holidays<div style="border-image: none;">
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<span style="color: #1f497d;"><span style="font-family: Calibri;">Happy Holidays to one and all! </span></span></div>
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<span style="color: #1f497d;"><span style="font-family: Calibri;"> </span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggUpgPzww1Pkp_VR3tiGx2Ric44uCuUy2nLLLqrxhu6AFr6RBUOQBP4vRO198Qdc0kq8_ieNnwy2wmd-LtESMnBC3YwDadmv6x8JY_mzc7ZYSfXydtH0CXfPMSKtQM6FPbBYRBw9gz5_cb/s1600/DSC_0387.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggUpgPzww1Pkp_VR3tiGx2Ric44uCuUy2nLLLqrxhu6AFr6RBUOQBP4vRO198Qdc0kq8_ieNnwy2wmd-LtESMnBC3YwDadmv6x8JY_mzc7ZYSfXydtH0CXfPMSKtQM6FPbBYRBw9gz5_cb/s400/DSC_0387.JPG" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVHoOx6TFRpGRblgB4DZsDA_JlJZHzNqaK7enRe5Lmv7-qCWPxlmqdFNuHmTt-oe5aGVlBETT304f0TqJtpX6y2Gc1LpN1pmXhM0YQYm4tiLBo7uXGjJzQf2TssKMGh6fbn_KZoF1RCoH3/s1600/DSC_0382.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVHoOx6TFRpGRblgB4DZsDA_JlJZHzNqaK7enRe5Lmv7-qCWPxlmqdFNuHmTt-oe5aGVlBETT304f0TqJtpX6y2Gc1LpN1pmXhM0YQYm4tiLBo7uXGjJzQf2TssKMGh6fbn_KZoF1RCoH3/s400/DSC_0382.JPG" /></a><span style="color: #1f497d;"><span style="font-family: Calibri;">We have had a good 4<sup><span style="font-size: x-small;">th</span></sup>
quarter here at chez David. We started the quarter with a trip home in
October for fall break. October 6<sup><span style="font-size: x-small;">th</span></sup> was the anniversary of my
father’s passing and we buried his ashes (those that weren’t spread elsewhere)
next to my mother. Aggie had a very nice headstone with a barn made, very
apropos for my dad. It of course brought all the sadness of it all back
to the surface but at the same time at least for me, it also gave me a sense of
peace with it all as well. I have been visiting that cemetery for 35
years now since my mother passed away and I find comfort in knowing she is
watching over him (showing him the ropes so to speak)! My Aunt Rose
took our family pictures at the farm while we were there. </span></span></div>
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<span style="color: #1f497d;"><span style="font-family: Calibri;"> </span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYhsZguET-Sq-9_gHB4GKEXsJ5lN0bU_-qKDqc5DIc30axPvfeHEBEnzlMUaK4OQXXOSbfDGKGQGeuxidsfD1dyTwVWC6Km1-QI4U5tFPujrt70CXHq2-Fd7L7ytInzEg139xJFcSVoc8m/s1600/DSC_0379+spot.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYhsZguET-Sq-9_gHB4GKEXsJ5lN0bU_-qKDqc5DIc30axPvfeHEBEnzlMUaK4OQXXOSbfDGKGQGeuxidsfD1dyTwVWC6Km1-QI4U5tFPujrt70CXHq2-Fd7L7ytInzEg139xJFcSVoc8m/s400/DSC_0379+spot.jpg" /></a><span style="color: #1f497d;"><span style="font-family: Calibri;">The rest of the quarter was
inundated with birthday parties, including Peyton’s 6<sup><span style="font-size: x-small;">th</span></sup>. She
has lost her 2 bottom teeth already. She is doing very well in school but
longs for the Pre-K days when school was only half a day and there was no
homework! Her freedom is getting squashed at Kindergarten, she doesn’t
have as much time to play at the park these days. I thought she would
enjoy being at school with friends all day but I think being at school with
friends and playing at the park with friends is very different. Despite
this though, she is exceling academically and behaviorally. </span></span></div>
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<span style="color: #1f497d;"><span style="font-family: Calibri;"> </span></span></div>
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<span style="color: #1f497d;"><span style="font-family: Calibri;">Coleson is also doing quite
well. In fact, I think he has had only 1 sick day from school, not
because he was sick but because there was strep throat in the Pre-school
classes and I didn’t want to chance it. After we got back from home, we
enrolled him in a Sensory Learning Program. Think of it like exercising
the neuron pathway to the brain that controls focus, stability, attention and
communication. He had to lay flat on a table that moved in a circular
motion while staring at a flashing light and listening to headphones with
music that would oscillate through the decibels. He had to do this
2x/day for 30 minutes ea. for 12 days straight. By the time
we got him into it, I wasn’t quite sure that he really needed it as he has
progressed to be in the average range in every area. However, I figured
it could only help him and so we went through with it. Thank you to those
who donated to Coleson’s cause so that we could afford to send him there!
He actually did quite well despite it being a pretty intense 12 days and I have
seen a difference in his attention, focus and his communication skills.
He still remembers going and everyday says, “No Sirri”, which is the
name of the place we did this at. Rachel did most of the weekday sessions
with him and I think she says the same thing! </span></span></div>
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<span style="color: #1f497d;"><span style="font-family: Calibri;"> </span></span></div>
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<span style="color: #1f497d;"><span style="font-family: Calibri;">We have scheduled his surgery
for next year for May 24<sup><span style="font-size: x-small;">th</span></sup> and I booked a house for the entire
summer. I really think this will be better for us all. I still
don’t know how to break the news to him as he is very much aware of what
happens at hospitals now and this surgery will only make that nervousness
worse. He has gotten a few shots lately (vaccines and flu) and though he
handled them all quite well (better than Peyton), there is no reason in the
world that a 4 year old will understand why he is able to run into the hospital
fine but come out with a double cast and in a lot of pain. </span></span></div>
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<span style="color: #1f497d;"><span style="font-family: Calibri;"> </span></span></div>
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<span style="color: #1f497d;"><span style="font-family: Calibri;">We took the kids to Polar
Express this weekend with some neighbor friends and I think Coleson really
understands Santa now. Nothing like meeting him in person! I hope
all of you have a happy holiday season. If you are thinking about ways to
help out others during the season, I have 2 recommendations:</span></span></div>
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<span style="color: #1f497d;"><span style="font-family: Calibri;"> </span></span></div>
<br />
<ol style="direction: ltr; list-style-type: decimal;">
<li style="color: #1f497d; font-family: "Calibri",sans-serif; font-size: 12pt; font-style: normal; font-weight: normal;"><div style="border-image: none; color: black; font-family: "Arial",sans-serif; font-size: 12pt; font-style: normal; font-weight: normal; margin-bottom: 0pt; margin-top: 0in; mso-list: l0 level1 lfo1;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivyl-od4Tn3lttAnfuIFPQTkqGNtUbjzpkRM3Xbjs-LnYdiveNd4EIPdBPRP7u-hb5-O7RL0pYTtxHedo05AiA23a2MdMwpjf75-7Jvjyu98Bop3VWHMvWCZVN6-zzidh235aZT11PSsHJ/s1600/DSC_0428.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivyl-od4Tn3lttAnfuIFPQTkqGNtUbjzpkRM3Xbjs-LnYdiveNd4EIPdBPRP7u-hb5-O7RL0pYTtxHedo05AiA23a2MdMwpjf75-7Jvjyu98Bop3VWHMvWCZVN6-zzidh235aZT11PSsHJ/s320/DSC_0428.JPG" width="213" /></a><span style="color: #1f497d; font-family: "Calibri",sans-serif;"> If you are in
Arizona, you can make a dollar for dollar tax credit on your Arizona income
taxes by donating to Waggoner Elementary School of up to $200 single/$400
joint. You don’t have to have kids in school. It is a direct $ for
$ so why wouldn’t you want this money to go to a school instead of to the
government. <a href="http://www.kyrene.org/Page/1404"><span style="color: #0563c1;">Kyrene.org/taxcredit</span></a>,
select Waggoner Elementary. </span></div>
</li>
<li style="color: black; font-family: "Arial",sans-serif; font-size: 12pt; font-style: normal; font-weight: normal;"><div style="border-image: none; color: black; font-family: "Arial",sans-serif; font-size: 12pt; font-style: normal; font-weight: normal; margin-bottom: 0pt; margin-top: 0in; mso-list: l0 level1 lfo1;">
<span style="color: #1f497d; font-family: "Calibri",sans-serif;">Also, you can sign up on
<a href="https://bethematch.org/"><span style="color: #0563c1;">Be The Match</span></a> (<a href="http://www.bethematch.org/"><span style="color: #0563c1;">www.bethematch.org</span></a>) as a bone marrow donor
(or if you don’t qualify, you can donate directly). It’s very
simple. This video, a parody of Taylor Swift’s “Bad Blood”, puts a light
hearted spin to the Bone Marrow Transplant process.</span><span style="color: #1f497d;"><span style="font-family: Calibri;"> </span></span><span style="color: #0563c1; font-family: Calibri;"><a href="https://www.youtube.com/watch?v=ZHJbAjvZ5QE&feature=youtu.be" target="_blank">A Bone Marrow Transplant parody of Taylor Swift's Bad Blood</a></span></div>
</li>
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<span style="color: red;"><strong>Hope your holidays are merry and bright!</strong></span></div>
Anonymoushttp://www.blogger.com/profile/10901667187660195423noreply@blogger.com0tag:blogger.com,1999:blog-9145630931962910999.post-91622891546561753572015-09-23T17:04:00.002-07:002015-09-23T17:04:46.558-07:00From Be The Match to Walk For Wishes<span style="font-family: Calibri;">It came as a surprise and with much disappointment that I
learned the Be The Match run/walk event has been discontinued in Phoenix.
Even though you all helped me raise over $1000 last year, it wasn’t enough for
them to return this year. However, I am very excited for another equally
worthy charity and event this year, Walk For Wishes.</span><br />
<o:p><span style="font-family: Calibri;"> </span></o:p><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Calibri;">I am on the Phoenix Chapter of the LGR Diversity and
Inclusion Network at Honeywell. The purpose of our chapter is to provide
professional development and networking opportunities for our Phoenix LGR
community and to engage in at least 1 community service event per year. As our
launch event, we have formed a team to Walk for Wishes on Sunday October 4,
2015 in support of Make a Wish Arizona. <o:p></o:p></span></div>
<o:p><span style="font-family: Calibri;"> </span></o:p><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Calibri;">As you may know, MAW grants wishes to children with
life-threatening medical conditions. Coleson will eventually be granted a
wish from this wonderful organization at a point in time he is able to decide
for himself what that wish will be. This year’s event just so happens to
fall on Coleson’s 4<sup><span style="font-size: x-small;">th</span></sup> birthday. I wonder what Coleson
will wish for as he’s blowing out his candle this year. <o:p></o:p></span></div>
<o:p><span style="font-family: Calibri;"></span></o:p><br />
<o:p><span style="font-family: Calibri;"> T</span></o:p><span style="font-family: Calibri;">here is no cost to walk
with the team, but any and all donations are welcome! The event consists of a
3K fun run/walk and a 1 mile fun run/walk. We will incorporate some networking
before or after the event with details to follow. Please join the team and
bring your families to this great event! Unfortunately, we have tickets to go
to Michigan for fall break and unless we switch our plane tickets will not be
at the event ourselves but there are already quite a few people signed up.</span><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<o:p><span style="font-family: Calibri;"> </span></o:p></div>
<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: Calibri;">To join our team and/or donate to MAW, click the link below: <a href="https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=1140456&supId=426648583" target="_blank">Walk for Wishes Donation Page</a></span><br />
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Anonymoushttp://www.blogger.com/profile/10901667187660195423noreply@blogger.com0tag:blogger.com,1999:blog-9145630931962910999.post-73768563046934187852015-09-19T09:05:00.002-07:002015-09-19T09:05:46.939-07:00Wheels on the Bus....<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizH5lzzjt5x2qZeX2R4qWR7QgZv00QSKsVwDvU12pHBkx8_4dJ4xoDQHLjKeY3Ou5KL2zoYeOTf9cad-Epl9QuC6i8Q8zU4bQDQczSSAYzbZ9O8z5wx1slKeTxFx3-TmLr9QkABf9p3mq_/s1600/IMG_2499.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizH5lzzjt5x2qZeX2R4qWR7QgZv00QSKsVwDvU12pHBkx8_4dJ4xoDQHLjKeY3Ou5KL2zoYeOTf9cad-Epl9QuC6i8Q8zU4bQDQczSSAYzbZ9O8z5wx1slKeTxFx3-TmLr9QkABf9p3mq_/s320/IMG_2499.JPG" width="320" /></a></div>
For Peyton, the wheels on the bus going round and round are just another exciting part of her daily school routine. She started Kindergarten this year and loves every bit of it, including her transportation home. She is making lots of new friends and is very well behaved in school. Each day she is so excited to share how many "Paw-sitives" she has to bring home or what level she clipped up to and if she got a blue or purple for her daily behavior rating. I am so proud of her. Despite the attention that we have to give Coleson and what our family has been through, she has turned out to be one of the biggest hearted big sisters and loves her family and friends very much. She behaves and listens at school and always stands up for her friends or gives them a hug if they are having a bad day... and it's all genuine. The other day I took the kids to Great Play for open gym and while Peyton is older than many of the kids she took 3 little 18mo girls (2 were twins) and started leading them to different play areas, picking them up if they fell down, asking them what toys they wanted, etc. I can't believe my fearless little girl who would rather ride the scariest ride than play with dolls has also found her inner nurturer. Couldn't be prouder.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkM8hvL4-ZmMh2AhatP2jS06OpvLRGy2xC3NPzFE84motUzZJgHFw_A30wBb8d7WwZ2wxSl6MsB3hWRI1-lpmGMJIsIcK56_5HKMuQizchEy8fr20M7Cwj5Z79bhX3UtMM0DFgXkEFOM_7/s1600/IMG_2516.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkM8hvL4-ZmMh2AhatP2jS06OpvLRGy2xC3NPzFE84motUzZJgHFw_A30wBb8d7WwZ2wxSl6MsB3hWRI1-lpmGMJIsIcK56_5HKMuQizchEy8fr20M7Cwj5Z79bhX3UtMM0DFgXkEFOM_7/s320/IMG_2516.JPG" width="320" /></a><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1UtRf1aSqDszEn63dWJnvxA1V-DMSUlHv_eHLgetwQqWPEjZfXMlrl7T0Lw2GuxdV6V3nK1IkBa9r_Bgc6OYmJo7z4vS-GcfM_p1TxzK1eBFq84ASNQ0gy4-pSbAtzGFisnQgmMQ7oI4c/s1600/IMG_0248.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1UtRf1aSqDszEn63dWJnvxA1V-DMSUlHv_eHLgetwQqWPEjZfXMlrl7T0Lw2GuxdV6V3nK1IkBa9r_Bgc6OYmJo7z4vS-GcfM_p1TxzK1eBFq84ASNQ0gy4-pSbAtzGFisnQgmMQ7oI4c/s320/IMG_0248.JPG" width="240" /></a><br />
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For Coleson, on the other hand, the wheels on the bus have stopped going round and round (at least home from school, he still sings the song constantly). After a couple weeks of school (second year pre-school) I thought he would enjoy riding the bus home 2 days/week. He loves vehicles and buses and rode one last year as a day trip with his class and loved it. Well, I don't think the first day went well as he was the first one on the bus the first day and didn't know what was going on. It was scary for him and after 2 weeks of riding the bus home he started having some behavior issues at school, particularly those days he was going to ride the bus home. So I canceled the bus and he has gone back to his usual happy self. We'll try again next year maybe. Otherwise I had his IEP review with the school and he is doing great. Progressing in all areas with still some underdeveloped areas to focus on, but not major ones. His teacher has seen a tremendous difference in his interaction with his peers and his openness to new things. His class is smaller than last year and is more his age so I think this helps as well. <br />
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After much hesitation, we decided to have tubes put back in his ears. These are not the normal PE Tubes but T-Tubes which are a little bigger and are supposed to last longer. I got a lot of feedback from the Hurler community and several Hurler kids have had multiple sets of PE Tubes, adenoids removed and other things to help the ears so I felt like we had to do it. My contemplations for not wanting to do them was because there is a lot of opinion out there that they shouldn't swim with tubes and this is one of the best and most enjoyable things Coleson can do and does do almost daily. The other is just for the mere fact that this was another procedure and another sedation and he is getting older and realizes what is about to happen which makes doing these things a lot harder. So far, his emotional well being has stayed strong but with every poke, Dr. visit, surgery, etc. I just fear that he will start to get frustrated by his condition. But I knew it was for the best so we arrive at 6:00am and were home by 9:00am and he was off and running once we got out of the car. He is such a trooper. Unfortunately, he won't be able to be "off and running" after his next surgery and that is when I fear he will start to realize the unfairness of his life. <br />
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Speaking of unfair...his favorite place, Great Play, is closing next week. He goes to Great Play 3x a week. It is our version of "Physical Therapy" and the timing is perfect as Rachel can take him right after school 2 days a week and I take him on Saturdays. He loves Buddy (the mascot) and looks forward to going every day. It's how we get him excited to go to school on Monday and Wednesdays! We held an early birthday party for him there last night just to get as much Buddy time in. I do not know how to break the news to him. Fortunately we will be heading off to Michigan the first week's it's closed and I hope that that helps the transition. I can not find anything similar that works well with his school. Other places have more morning classes when he's in school. Anyone want to open a Great Play in the Tempe/Chandler area? :)<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6txNbP4k6YuLY31mfDWl57fvDNf4GfqcrQKI36YOdL4om3Do-tRf0q3_pEu3hB2_QSUqaOSs2y5EmMXkuJrWRUggTPHKEOuPzru1opfQiEF3j-mLokuDbRjN2-Z6L8HJCCAPklG4Mt0PX/s1600/IMG_2567.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6txNbP4k6YuLY31mfDWl57fvDNf4GfqcrQKI36YOdL4om3Do-tRf0q3_pEu3hB2_QSUqaOSs2y5EmMXkuJrWRUggTPHKEOuPzru1opfQiEF3j-mLokuDbRjN2-Z6L8HJCCAPklG4Mt0PX/s320/IMG_2567.JPG" width="320" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTeMjLV6jxntefqFQ1QSHIp91Nlx8i7m8hpoYobISpe3ocx2BQQTzYlm2xVnwwkAEZKjFMkQDSIg4X1LDbqT7ijoOUoGt_JEtG7Wkh3xx9CxHND4OmbZiDIERH8AF_I8AZC-_jsNAfw3qw/s1600/IMG_2544.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTeMjLV6jxntefqFQ1QSHIp91Nlx8i7m8hpoYobISpe3ocx2BQQTzYlm2xVnwwkAEZKjFMkQDSIg4X1LDbqT7ijoOUoGt_JEtG7Wkh3xx9CxHND4OmbZiDIERH8AF_I8AZC-_jsNAfw3qw/s320/IMG_2544.JPG" width="320" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUtpBQd-pGm6IPlZkIdDYE06ITPYPJWWLPlYpFW-8nbQ85tzmU81h3UFiTzYsgs2IcYVWnr5flh-p-D2SD-OxaY2_RmBztpHH4sEUER2Us5b__xRwQmZrotxYWLDC_xggKvByaygsQJ-Bl/s1600/IMG_2590.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUtpBQd-pGm6IPlZkIdDYE06ITPYPJWWLPlYpFW-8nbQ85tzmU81h3UFiTzYsgs2IcYVWnr5flh-p-D2SD-OxaY2_RmBztpHH4sEUER2Us5b__xRwQmZrotxYWLDC_xggKvByaygsQJ-Bl/s320/IMG_2590.JPG" width="213" /></a></div>
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The kids and I and Rachel made a last minute trip to Rocky Point with our friend Kim and her kids and nanny. Paul was on a golf trip with his buddies and after several years of Kim inviting us, I happened to ask her what she was doing for the weekend and when she invited us to go, I did not have a good excuse not to, even Rachel could come with so I had help. Coleson is healthy right now, and doesn't have any near term surgeries, appts. etc. so we went. It was a nice getaway and the kids loved it. Peyton was so excited when she got of the bus to learn we were packing up to go with her friends on a trip. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRRfgkR7XzwsIg7HDAosGnwyGjFIhCt-XL1QPFxTjdy9Ox8uM_bhVmE56iEOI_JQpx5itP4jIjdp6uV1UY1yXD7-ntA058DVU_fjq7YUuLX0TCjlhuRdwVjmDy9Ny-TW00ahNDMO_DK3r4/s1600/DSC03219.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRRfgkR7XzwsIg7HDAosGnwyGjFIhCt-XL1QPFxTjdy9Ox8uM_bhVmE56iEOI_JQpx5itP4jIjdp6uV1UY1yXD7-ntA058DVU_fjq7YUuLX0TCjlhuRdwVjmDy9Ny-TW00ahNDMO_DK3r4/s320/DSC03219.JPG" width="213" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgW5wNTLoKA1l8CoGFKLrRaqy3RMahSCVwQItc59Q6ZqHcErJEnp728giqarhAvBbiCa_5Q9iZ8Tzakj2am_-C47c762GF8P4U4oZkK0h88sDjtSl7NRasUbBcc-llh5e6pYUZf706rwsZq/s1600/DSC03218.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgW5wNTLoKA1l8CoGFKLrRaqy3RMahSCVwQItc59Q6ZqHcErJEnp728giqarhAvBbiCa_5Q9iZ8Tzakj2am_-C47c762GF8P4U4oZkK0h88sDjtSl7NRasUbBcc-llh5e6pYUZf706rwsZq/s320/DSC03218.JPG" width="213" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitKzjTEQKk-QOEA16m1dKMFoEKEUsTuLbfobYaN-OmojQ0lYo9GPB63kv7o3DQMvpLhPxsBDIYmTG3HHI3jlxybkzuGTeoNbg-tbEzXYWqXUWe15ldJu94XqbsXGy_-17eMvmCarptVWT9/s1600/DSC03211.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitKzjTEQKk-QOEA16m1dKMFoEKEUsTuLbfobYaN-OmojQ0lYo9GPB63kv7o3DQMvpLhPxsBDIYmTG3HHI3jlxybkzuGTeoNbg-tbEzXYWqXUWe15ldJu94XqbsXGy_-17eMvmCarptVWT9/s320/DSC03211.JPG" width="213" /></a></div>
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Anonymoushttp://www.blogger.com/profile/10901667187660195423noreply@blogger.com0tag:blogger.com,1999:blog-9145630931962910999.post-11878579174965202652015-07-28T17:02:00.001-07:002015-07-28T17:08:13.804-07:00The Good, the Bad and the Ugly<span style="font-family: Calibri;">I believe I had a prior post with the same title… C’est la
Vie! <o:p></o:p></span><br />
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<span style="font-family: Calibri;">As promised, a medical run down of our week in
Minneapolis. You’ll know why I separated these posts about half way
through it. <o:p></o:p></span></div>
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<o:p> </o:p><u><span style="font-family: Calibri;"><strong>The Good<o:p></o:p></strong></span></u></div>
<span style="font-family: Calibri;">Our week started with fasting labs followed by a consult
with Dr. Wes Miller, Coleson’s BMT Dr. I feel consult is a more
appropriate description for out visits and none of our appts. are straight
forward. There is a lot of back and forth and decision making that
happens within these windows of time and I need to take full advantage of the
time we have with these Dr.s in person. It’s hard to have your medical
“team” be 2000 miles away from you. We do have local counterparts here
for many of the areas but the Hurler experts are in Minnesota. Remember
Coleson was the first BMT Hurler patient in the valley in the last 20
years. <o:p></o:p></span><br />
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<span style="font-family: Calibri;">Wes (yes, we are on a first name basis with our Dr.s) thought
he looked great! His chemistry was all in “normal” range. It will be a few
weeks yet before we get his engraftment and enzyme levels which I am always
anxious to receive. Last month we saw our local Phoenix geneticist and
they took GAG & Antibody levels. These 4 tests are the key indicators
of how Coleson is doing from a “Hurler”/BMT view.<o:p></o:p></span></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCBb_DVV0k1_zZt6A-zGHjKvz2eeJ_jCm1KFUPTEGC9UEkkGGxyed6QN-XPLYm8IyDyqUexBRuEg_2YyuBctR3owsyRiGG4HrQg__n46ICkLOpL5E2mDFFHOz_S4b8WSapArk7pnXCAexf/s1600/021.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCBb_DVV0k1_zZt6A-zGHjKvz2eeJ_jCm1KFUPTEGC9UEkkGGxyed6QN-XPLYm8IyDyqUexBRuEg_2YyuBctR3owsyRiGG4HrQg__n46ICkLOpL5E2mDFFHOz_S4b8WSapArk7pnXCAexf/s320/021.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Wes Miller - much better photo than 2 years ago.</td></tr>
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<span style="font-family: Calibri;"><strong>Engraftment </strong>- means what percent of “Jacob cells” (I no
longer need to refer to them as donor cells) he is producing. He was 100%
last year and of course what we hope continues.<o:p></o:p></span><br />
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<span style="font-family: Calibri;"><strong>Enzyme levels</strong> – the amount of enzyme he is producing (0% =
Hurler), and he was within normal range last year at 49%. The higher the
better for this normal to eat away at some of the GAG (build up in his body
that occurred pre-transplant that wreaks havocs on joints, bones and muscles).<o:p></o:p></span></div>
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<span style="font-family: Calibri;"><strong>GAG </strong>– As mentioned above the amount of “Stored” build-up in
his body. He was at 85 last year and post-transplant has held steady at 5
for the past 2 years.<o:p></o:p></span></div>
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<span style="font-family: Calibri;"><strong>Antibody Level</strong> – Is he building antibodies against the
enzyme, rendering the transplant not effective? This came back negative
(which is good).<o:p></o:p></span></div>
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<o:p> </o:p><span style="font-family: Calibri;"><span style="color: black;">We talked about continued Enzyme Replacement Therapy and he
felt that is still very beneficial and according to a recent study that U of
Minn participated in, the more enzyme circulating in the blood stream the
better. So for now, he will continue. We even got a half way decent
photo with Wes, nurse coordinator Teresa and Paul Orchard, the head Hurler BMT
Dr. at the U and is highly involved in the clinical trials and advancements in
Hurler and Storage disorder treatments. I will never forget his email
response to me on that Sunday afternoon!<o:p></o:p></span></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjU3EGeWA9s5t9SYVUwMdvDqac36286D2QabjDvfbVX_yd2js5Barj7_R6md9C_HpkXkHeGJ5KecZBs7wK86AktZrDAQzd9n0zaILbjOYRJMGhsxiXYhOsPbf_KQFiotvHuynJ3UDbWLWW4/s1600/022.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><span style="color: black;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjU3EGeWA9s5t9SYVUwMdvDqac36286D2QabjDvfbVX_yd2js5Barj7_R6md9C_HpkXkHeGJ5KecZBs7wK86AktZrDAQzd9n0zaILbjOYRJMGhsxiXYhOsPbf_KQFiotvHuynJ3UDbWLWW4/s400/022.JPG" width="400" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="color: black;">Paul Orchard, BMT, Paul and Coleson with his Recycle Truck </span></td></tr>
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<span style="font-family: Calibri;"><span style="color: black;">We had X-Rays, EKG and Echo next. I say “we” as I
often have to hold Coleson during everyone one of these procedures to keep him
calm. He really is a trooper no doubt but can you imagine, we are already
at our 5<sup><span style="font-size: x-small;">th</span></sup> “procedure” on our first day and it’s not even noon!<o:p></o:p></span></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_qDMCrd8JkylMd0Ga3iqSYVFU_n_DusedfotMjrgFcgLJ4WNqJhYnwltas2W1gzk7thkVZVGHLIZOlRzjqNXjYX8JYQJacJuKTk76mFxwGtVtju_kL0_Bn77LvbPkquoRVm_WD9fcCV_j/s1600/016.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><span style="color: black;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_qDMCrd8JkylMd0Ga3iqSYVFU_n_DusedfotMjrgFcgLJ4WNqJhYnwltas2W1gzk7thkVZVGHLIZOlRzjqNXjYX8JYQJacJuKTk76mFxwGtVtju_kL0_Bn77LvbPkquoRVm_WD9fcCV_j/s320/016.JPG" width="320" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="color: black;">We will miss Teresa! Good Luck at NP school.</span></td></tr>
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<span style="font-family: Calibri;"><span style="color: black;">In the afternoon we had neurology and cardiology consults.
Neurology was painless but the wait was not! We were in the room
for 45 minutes before thankfully a music therapist showed up and Coleson got to
take out some much needed energy on the drums! He loves the drums.
Another 15 minutes later, the neurologist arrived and gave him a gold
start. He doesn’t show any signs of nervous system or brain impact.
He actually is quite smart! <o:p></o:p></span></span></div>
<span style="font-family: Calibri;"><span style="color: black;">The cardiologist consult was the last of the day and overall
his heart condition was great! He has minor thickening of the mitrial
valve but it is not impacting his heart function…but<o:p></o:p></span></span><br />
<span style="color: black;"></span><br />
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<strong><span style="color: black;"><o:p> </o:p><u><span style="font-family: Calibri;">The Bad<o:p></o:p></span></u></span></strong></div>
<span style="font-family: Calibri;"><span style="color: black;">… I was hoping his PDA had closed on its own but this was
wishful thinking as she confirmed it was still there, not surprising to her,
and we were still on schedule for his heart surgery to fix the PDA on
Wednesday.<o:p></o:p></span></span><br />
<span style="color: black;"></span><br />
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<span style="font-family: Calibri;"><span style="color: black;">Tuesday was an earlier morning and I pulled Coleson right
out of bed and into the car where he promptly said, “No hospital, No hospital!”
Broke my heart and we were only starting day 2! I promised him
no “owies” though I am not sure how honest I was being considering we started
the day with a 4 hr. neuropsych evaluation. It is one of the most dreaded
appts. for me, nothing like over analyzing everything your kid does/doesn’t
do. However, for him, hopefully it feels more like playing. <o:p></o:p></span></span></div>
<o:p> </o:p><br />
<u><span style="font-family: Calibri;"><strong>The Good<o:p></o:p></strong></span></u><br />
<span style="font-family: Calibri;">However, I guess the 4 hr. duration was worth it as he made
progress in every developmental area, even his receptive/expressive
communication which is the one area he had been a little lagging in. They
stressed the continued need for speech therapy for his enunciation and OT for
his fine motor skill development. He scored average in both areas while
his cognitive scores were still above average (he can count to 100
already!) I often wonder what he would have been like had he not had
Hurler but these are fleeting thoughts as there is no purpose on dwelling on
the what ifs. We quickly squeezed in a pulmonary consult which happens to
be on the same floor where which he sailed through with flying colors, despite
the respiratory scare we had the week before. Then we were off to St. Paul to
Gillet’s Children’s hospital for a hand ultrasound (to check for carpel tunnel)
and a consult with the hand Ortho.<o:p></o:p></span><br />
<br />
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<o:p> </o:p><span style="font-family: inherit;"><u><strong>Technical <s>Solutions </s><span style="color: red;">Difficulties (the bad)</span></strong></u><o:p></o:p></span></div>
<span style="color: black;"><span style="font-family: inherit;">When we checked in, we were handed a tracking
device and a buzzer similar to what is used for restaurant wait lists. As
the newly named Director of Contracts Technical Solutions, I am always
impressed with new technology that better enables a process. After waiting
45 minutes without a "buzz", I waited in line for the
receptionist. There was only 1 of her and 3 of “me” in line so it took 30
minutes to get to her. By that time we had missed the consult with the
Dr. and when I handed her my tracking device and buzzer, she informed me that
the buzzer had not been assigned correctly! As you just read, we had
already been through 5 hrs. of appts., travel to 2 hospitals and an 1:15
hr. wait. I was not happy to say the least!<o:p></o:p></span></span><br />
<span style="font-family: inherit;"></span><br />
<span style="color: black;"><strong><span style="font-family: inherit;">Customer Service (the good)<o:p></o:p></span></strong></span><br />
<span style="font-family: inherit;"><span style="color: black;">However, the receptionist provided great customer
service which always makes these things a little easier - right HW
colleagues? </span><span style="color: black;">J</span><span style="color: black;"> and got us right into the Ortho for our consult and based
on her range of motion exercises with Coleson determined that his wrists,
elbows and shoulders had actually improved and we could skip the
ultrasound! I guess it was worth the wait to skip another “picture
taking” session!<o:p></o:p></span></span><br />
<span style="font-family: inherit;"></span><br />
<span style="color: black;"><span style="font-family: inherit;">Are you exhausted yet? We are only on
Tuesday people!<o:p></o:p></span></span><br />
<br />
<u><strong><span style="color: black;">The Ugly</span><o:p></o:p></strong></u><br />
<span style="font-family: Calibri;">Wednesday started early, with a 5:00am wake-up call and a
6:00am check-in time. After the usual 1:30mins of pre-op, meeting with
the Dr.s, nurses and anesthesiologists (who I have the utmost respect for!), he
was taken back to the OR. It never gets easier no matter how many times
we have been through this routine. It is comforting to see familiar
faces, although I would be happy if I never saw any of the surgical team ever
again! </span><span style="font-family: Wingdings;">J</span><span style="font-family: Calibri;"> Its funny how
even the smell of the surgical ward is familiar... and we have our typical
routine. I struck a conversation with another mother whose son was
getting his adenoids out, a first timer. I feel like a pro at the waiting
room protocol and let her discuss all of her anxieties, nervousness, etc…
Only then did I tell her that this was at least number 10 for Coleson (I have
to finish documenting all of his surgeries to be sure and how do I count
multiple procedures at one time?) <o:p></o:p></span><br />
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<o:p> </o:p><span style="font-family: Calibri;">He was supposed to have an MRI after the procedure but they
failed to realize that they would be inserting a metal coil into him for his
PDA and putting him into a gigantic magnet right afterward may not be the best
idea! I thought perhaps we would escape the MRI this year but since he is
participating in a trial for the intrathecal enzyme therapy, it is required…
after all the intent of the intrathecal is too deliver the enzyme to the
brain. So unfortunately we will have to follow up in Phoenix with an MRI
after the tissue has formed around the newly placed coil (6-8 weeks).
Though the procedure itself is fairly low risk, the recovery from it is
difficult. He has to lie still, strapped to a board for 4 hrs. while the
blood clots around the incision areas (one in the vein and another in the
artery in his right groin). It took him longer to wake up from this
surgery than prior surgeries and I was getting anxious to get back to him
post-op. I always forget how cold it is in the PACU and we were there for
4 hrs. Longer than required as they needed to one last echo to ensure the
coil stayed in place and though they called the echo tech @ 1:00, they didn’t
arrive until 2:00, just my luck the tech was training so not only did we have
to wait for her to do the echo, he got a “bonus” echo by the trainee (Just our
luck). No problem if this had occurred during the 4 hr. lie motion less
post-op but this was hr. 5 and all 3 of us were getting a bit
restless. We still had to be careful of his incisions and as we
arrived at Janna and Steve’s for dinner and he comes running out of the car I
mention how I have to ensure blood doesn’t start gushing out of his
incisions! You would have never known that he had spent from 6:00am to
3:00 in the “surgical process” besides the gnarly bruise and the new “beauty
marks” (scars)!<o:p></o:p></span></div>
<br />
<span style="font-family: Calibri;">What day are we on again?!<o:p></o:p></span><br />
<br />
<u><span style="font-family: Calibri;"><strong>The Bad<o:p></o:p></strong></span></u><br />
<span style="font-family: Calibri;">Ah yes, another pull him out of bed right into the car for
the audiology testing. I was hoping for good results since the ABR he had
in December showed normal hearing activity and his vocabulary and communication
skills have improved greatly. However, the pressure in both ears was not
equalizing and he does have fluid in his left ear (his eustachian tube is not
as vertical as it should be). So they only got one recordable event which
happened to be normal range but recommended he get tubes in his ears again (3<sup><span style="font-size: x-small;">rd</span></sup>
time is a charm)!<o:p></o:p></span><br />
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<span style="font-family: Calibri;">Next stop endocrinology with a new Dr. Dr. Polgreen
who had seen the Hurler kids for years left to go to California to do research
and clinical trials for Hurler. I was skeptical to see Dr. Miller (Brad–
not Wes) but was pleasantly surprised and really like him. He was so good
with Coleson and explained everything very thoroughly, though it did confirm
that the thyroid medicine that Coleson has been on for about 3 months is
keeping his TSH levels in normal range (which is a good thing) but just confirms
that he has hypothyroidism. I was hoping his TSH would be too low and
would indicate Thyroid medication is not needed. It’s not the end the
world but it is a daily medication… for which I have found a new transport
vehicle… Reese’s Peanut Butter Cups! The crushed pill sticks to the PB
and he is none the wiser! <o:p></o:p></span></div>
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<o:p> </o:p><u><span style="font-family: Calibri;"><strong>The Good<o:p></o:p></strong></span></u></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgA5y0FNmNbLSetMuu1h0KvGC-PKQB_K5rZUzgReZU28I8JpBs6R3J9Tql6h210rcH41GriGCD6kaPURMv89ivsBEEEeTrfTPla7wEVEhkZJXcTF2CzxfFlLHVb-hL60dHM0hmSqRa22ICl/s1600/044.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgA5y0FNmNbLSetMuu1h0KvGC-PKQB_K5rZUzgReZU28I8JpBs6R3J9Tql6h210rcH41GriGCD6kaPURMv89ivsBEEEeTrfTPla7wEVEhkZJXcTF2CzxfFlLHVb-hL60dHM0hmSqRa22ICl/s320/044.JPG" width="240" /></a><br />
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<span style="font-family: Calibri;">Other than the above news, he is growing according to the
chart and actually gained a %. He is now on the 2% growth curve! We
talked in great detail about Growth Hormone, a controversial topic and one that
we do not need to get to deep into yet. We traveled to the Spine Center
to see Dr. Schwender, neck and spine ortho. This was probably one of the
most positive consults. After more “pictures”, Coleson’s kyphosis had
improved from 42% arc to 15% arc. That’s from all that swimming and
climbing! I tell you, he tries to do everything his sister does and she’s
a daredevil herself! Not sure if that is a good thing or not! His
spine and neck looks great and foresees no spine surgery in his future much to
my relief… however, he also was formerly the hip and knew ortho and he prepared
us for what Dr. Walker, our next appt. would be telling us, and what I knew but
was hoping for a miracle would not be required…<o:p></o:p></span></div>
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<u><span style="font-family: Calibri;"><strong>The really UGLY<o:p></o:p></strong></span></u><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjSnT1HpfV-Iqi-KSONjgNM_zAxrzi0zPY-VQFUwfYYJ39SMij0FXHYABN2FkDqLGjzHPZsubFwVr3QlzxtXFfzV9L3rOj7RWbgzKvZKfSVAEO1PftKvSswFnNRkavJG3aMWZWbe_gnPuM/s1600/048.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjSnT1HpfV-Iqi-KSONjgNM_zAxrzi0zPY-VQFUwfYYJ39SMij0FXHYABN2FkDqLGjzHPZsubFwVr3QlzxtXFfzV9L3rOj7RWbgzKvZKfSVAEO1PftKvSswFnNRkavJG3aMWZWbe_gnPuM/s400/048.JPG" width="300" /></a><span style="font-family: Calibri;">Dr. Walker (appropriately named considering he is a hip and
knee specialist) was the appointment I was dreading the most. Yes, even
more so than surgery and neuropsych eval. After another round of
“pictures” (we’re getting good at bribing) we had a “extended consult” with the
Dr. It’s never good when your appointment is labeled, “Extended”.
We spent nearly 2 hrs. Discussing the surgery Coleson will need next summer,
Pelvic Osteotomy and Proximal Femoral Osteotomy. In layman’s terms, Hip
Reconstruction, on both hips. Basically, they will cut his hips and
create a wedge and cut off another piece of his hip to insert into these wedges
so that it completes the hip sockets. At the same time, they cut his
femurs and reposition the thighbone into the hip socket. They screw a
metal plate into his femurs (which requires another surgery to remove).
Sounds fun, huh? Oh, then he will need to wear a cast from his thighs to
below his knees for at least 4 weeks. Ideally they will do both sides and
both procedures at the same time. These surgeries are fraught with
risk. They are cutting the very place where bone marrow is made with high
risk of blood loss and transfusions required, potential of the bone dying (and
therefore not ever growing), spinal injuries (from being sedated &
intubated for so long), infections, etc. They have 2 surgeons working on
him at the same time to reduce the surgical time and hook him up to electrodes
to monitor his central nervous system. Did I leave anything out?
Oh, yeah, that outside of the BMT, this is probably going to be the most
stressful, worrisome procedure he will need to have. And we will do this
in Minnesota so we will be living away from home for the summer again.
Though I love the RMH, I do not want to live there again necessarily.
It has its pros and cons and it was there when we needed it most, but I think
for this procedure, it is better for Coleson and our whole family to be
somewhere I can protect him better. <o:p></o:p></span><br />
<br />
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<span style="font-family: Calibri;">Anyone have a rental house in the Minneapolis area? </span><span style="font-family: Wingdings;">J</span><o:p></o:p></div>
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<br />Anonymoushttp://www.blogger.com/profile/10901667187660195423noreply@blogger.com0tag:blogger.com,1999:blog-9145630931962910999.post-18569546336468400902015-07-27T20:38:00.000-07:002015-07-27T20:38:02.754-07:00A Brother from a Different Mother & 2 Year Re-Birthday!Usually this is said figuratively but in Coleson's case, this takes a quite literal sense, in fact twins! The highlight of our trip to Minnesota was meeting Coleson's Donor, Jacob and his family. It is an exceptional experience and one that does not happen that often for various reasons. We are so very grateful for Jacob and his family who were faced with the decision to help try to save a life of someone he didn't even know. I'm not even sure what to call such a person. Somehow adjectives like generous and unselfish do not seem adequate. We call him our hero! I'm not sure what gift we could give him in return other than a heartfelt thank you and to meet Coleson in person. <br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEha25vD-wT3-C35uTR58b7y1UpVTkErUo0A4IdpNcshwWkwFTxAdNtajqUsbo7_eN9_-xX_vTu_9ijeVWowvaNnv5xLROKU0-LoYemZL5nWP5q68_NUHcIHFEAFW1s6P9fLvP85aSbUEuCu/s1600/IMG_2477.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="425" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEha25vD-wT3-C35uTR58b7y1UpVTkErUo0A4IdpNcshwWkwFTxAdNtajqUsbo7_eN9_-xX_vTu_9ijeVWowvaNnv5xLROKU0-LoYemZL5nWP5q68_NUHcIHFEAFW1s6P9fLvP85aSbUEuCu/s640/IMG_2477.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Can't you see the resemblance?!</td></tr>
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During the transplant, you may recall I mentioned a physic reading I once had where the physic said I was going to have twins. Well I guess I don't have twins but rather a twin, genetically speaking. Hopefully he inherits Jacob's height as Paul and I didn't give him much to work with in that category! Also, we now have a new namesake for the J. in Coleson J. David.</div>
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<u>Happy 2 year Re-birthday Coleson (July 24th)!</u></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQPG6GfN3vAB1xFmAPYTk8ZQ0DjZtXRaJrUyR60_Q0UXjNcyJSj39Ep08qgMqZLbhp_yRNF0wDL1eKdYVVJNCWEOPpkv4dXBD1ez7cPN_FrCGD_-_TeT13bUowC-zQRHWrkJI8NfACOoqJ/s1600/024.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQPG6GfN3vAB1xFmAPYTk8ZQ0DjZtXRaJrUyR60_Q0UXjNcyJSj39Ep08qgMqZLbhp_yRNF0wDL1eKdYVVJNCWEOPpkv4dXBD1ez7cPN_FrCGD_-_TeT13bUowC-zQRHWrkJI8NfACOoqJ/s400/024.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Peyton just can't resist climbing on RM</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifXwxcdMY37QM8clD0drsHGONNQvMRZXrqsSak1KldCQrsqd_sRvxKpCpPi_KLDaegQGKPr-4hJx2MDbjMnMGphXl-Bk2gEUc9fPoYVgfPKqMJ_jTtLhYeSrj0QlsO3rHIuYM1a8roZE8v/s1600/061.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifXwxcdMY37QM8clD0drsHGONNQvMRZXrqsSak1KldCQrsqd_sRvxKpCpPi_KLDaegQGKPr-4hJx2MDbjMnMGphXl-Bk2gEUc9fPoYVgfPKqMJ_jTtLhYeSrj0QlsO3rHIuYM1a8roZE8v/s400/061.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Finally one without climbing!</td></tr>
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I can't believe it's been 2 years since Coleson's BMT. We just got back from our annual tour of Minneapolis hospitals where Coleson had no less than 16 different "procedures" including consults, x-rays, surgery, labs, etc. It is an exhausting and overwhelming week where you hope for the best of news and end up walking away with some mixed news. It was no different for us this year... I will fill you in on all the medical details tomorrow as I want to share the positive aspects of our trip. I will mention though that it is nice to see "old" friends. Lizzie and Caleb were not able to make it at the same time this year but we got to see Brayden, Maddie, Tia and Ari. We didn't get to see Maddie last year so it was nice to get to see her this year. We celebrated at the RMH house on Bingo night so the house was full of people including 2 Hurler families who both have been there way to long. One little girl failed transplant - never engrafted and had an emergency second transplant and the other family with fraternal twins, girl & boy, both have Hurler. The girl is doing well but the boy is starting to reject his donor cells and will need another transplant as well. Ironically the former little girl also is a fraternal twin but her twin is unaffected. My heart goes out to these two families as they are into the 200 day range already and their journeys are far from over. </div>
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<tr><td class="tr-caption" style="text-align: center;">Ari, Tia, Brayden, Coleson</td></tr>
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<span style="color: black;">Peyton had a fun week bonding with Grandma. Aggie flew into Minneapolis while we drove so she could play with Peyton. Peyton is not one for Hospitals and to try to keep our Minneapolis trips as positive experience as possible for the entire family, Grandma thought it best they play. And play they did. We stayed at a hotel with a big indoor park/play center. If you know Peyton, she is high energy and loves physical play. She loves to swim, play at the park, gymnastics, dance, etc. She played all day long at that play center and even most of the night. Tuesday the hit the rides at Mall of America (Nickelodeon Universe) where she rode no less than 30 rides over an 8 hr. timeframe. She even got Grandma on a roller coaster. Paul, Coleson and I met them after our exhausting day (more details tomorrow) and for the first time since BMT, Coleson got to ride the rides too. And he loved them just as much as Peyton! Especially the Wonder Pets ride which he rode on 5 times in a row and had this same reaction each and every time! </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioG_uqQpu2AGkMkODeJsIpNKNqYME4lX8CxWaf269uhrVW4f3Yr2zlugG_2pUCKpLHLuWodjuQn4zzgxcergJr0B_JL2Ez4_hT_GhAlilYGS27stHnES4T5YKc7e7U9M7C7pFTIONJX1uo/s1600/Water+fun+with+Ari+and+Brayden.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioG_uqQpu2AGkMkODeJsIpNKNqYME4lX8CxWaf269uhrVW4f3Yr2zlugG_2pUCKpLHLuWodjuQn4zzgxcergJr0B_JL2Ez4_hT_GhAlilYGS27stHnES4T5YKc7e7U9M7C7pFTIONJX1uo/s1600/Water+fun+with+Ari+and+Brayden.jpg" /></a><span style="color: black;">The next day they took it easier and played in the pool at the hotel and then after Coleson got out of surgery (Yes, another one bites the dust), we went to my Honeywell friend, Janna's for dinner. One of her sons and his family was there and they have a little girl a year younger than Peyton so she was happy. Although she and grandma had shrimp for lunch and for the 3rd time, she got sick a few hours afterward. I am convinced she is allergic to shrimp now. Thursday was all day at the Waterpark of America with Brayden and Ari and their families with the birthday celebration mentioned above at night. Friday we met up with my friend Nicole and her daughter for a park play date and then to the RMH where my Minnesota Honeywell family donated, volunteered, cooked and served dinner. Another awesome dinner served! </span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDlDcMdk5rEC1MCWdAWbBzLU1O-5K_bAszdQ8WFX-wIkb27a-BURl0YpC5Jo1btFpUIbBDcFwtFN_QuWHQ4dgrYS86C9VB_1z81vgGJTUzgZAvLK-WqTtcCxQrFLfcNO8c-_Sf9YdZcKlU/s1600/Napping+Coleson+at+RMH.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDlDcMdk5rEC1MCWdAWbBzLU1O-5K_bAszdQ8WFX-wIkb27a-BURl0YpC5Jo1btFpUIbBDcFwtFN_QuWHQ4dgrYS86C9VB_1z81vgGJTUzgZAvLK-WqTtcCxQrFLfcNO8c-_Sf9YdZcKlU/s320/Napping+Coleson+at+RMH.jpg" width="320" /></a></div>
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We also stopped to see a dear friend, Karee Jo, who is in the hospital enduring another 20 rounds of chemo. She was here in 2013 where she went through her first 20 rounds and a surgery to remove the tumor and half of her lung. It returned 9 months into remission and she is back at it again. This little girl defines the word, "tough" and the only time I saw her break down was when she was told she might not be released in time to make it to the One Direction Concert on Sunday. Which she did and she got to meet them backstage. We love you Karee Jo and can't wait until you are back in remission. </div>
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I'll give you all the gory medical details tomorrow. It's time I put my kids into bed!<br />
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Anonymoushttp://www.blogger.com/profile/10901667187660195423noreply@blogger.com0tag:blogger.com,1999:blog-9145630931962910999.post-51341311272201716022015-05-22T17:00:00.000-07:002015-05-22T17:00:08.267-07:00Graduations and Celebrations<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXbiTr35K_nwVwCBzMjjf01IKFqnLWPwQpBr74sFK8KMX0iAHdQEWD-uSbQLwayCA5P-FYBZpa_fVcreSZ2FmQC8gzjF3XNCpy_9MWSDrNxbube80JbUpT_XagXdUIC2GrIaqyzXUSwMvb/s1600/IMG_2396.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXbiTr35K_nwVwCBzMjjf01IKFqnLWPwQpBr74sFK8KMX0iAHdQEWD-uSbQLwayCA5P-FYBZpa_fVcreSZ2FmQC8gzjF3XNCpy_9MWSDrNxbube80JbUpT_XagXdUIC2GrIaqyzXUSwMvb/s320/IMG_2396.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Not sure any actually made it into his mouth!</td></tr>
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Well we pulled off the big surprise by showing up unexpectedly to schools and homes last weekend. My Grandma looked great for any age, much less 100. It was a short weekend but packed full of fun, so much so that Peyton with that huge heart of hers, did not want to leave her cousins! The first time that she was in tears leaving. It was fortunate (and just coincidental) that my niece Katie was "too sick" to go to school on Friday and when she showed up at Grandma's house in the morning to find us eating breakfast her jaw hit the floor. She wasn't too sick to spend the day playing with Peyton and Coleson though and so we went to Mooville for some ice cream. Then we showed up at the High School to surprise my oldest sister and my other niece. Jaw dropping must run in the family because they both had the same reaction. Then we headed over my nephew's school to surprise my other sister and the boys. They didn't necessarily have the same reaction (they are boys and play it a bit cooler) but none the less were happy to see Peyton and Coleson. All my nieces and nephews are so good with my kids. They spent the evening schooling Paul at basketball and playing on their scooters. We also surprised my grandma at her place on Friday as Saturday we predicted would be a bit overwhelming. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3qAI7ihhN0IGEGU_D7Y6nXMG8uifYzqdoSttIdEf7YFLSEXNMhrzptlesxaNQkDJZtN4LbDF5GhyJXe6QuPZu247Vzug7RoZ5Do8CTBatjQTaT8BxbQ6b9gIPENexbsL35vFkjkHrT0ld/s1600/IMG_2405.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3qAI7ihhN0IGEGU_D7Y6nXMG8uifYzqdoSttIdEf7YFLSEXNMhrzptlesxaNQkDJZtN4LbDF5GhyJXe6QuPZu247Vzug7RoZ5Do8CTBatjQTaT8BxbQ6b9gIPENexbsL35vFkjkHrT0ld/s320/IMG_2405.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Looking Great at 100!</td></tr>
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Saturday was spent playing on the farm and Aunt Lorin's house until Party time. Lots of people showed up Hope Landing to celebrate both 100 birthdays. I don't think age is a topic they talk about much at Hope Landing so there were quite a few residents who were equally surprised by the special day. Saturday night was another basketball schooling and family fun. Sunday was short as we had to leave for the airport at 11:00. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibwQhPZQ8oynFhkFwfeTVhNHM0vSW9dBs9z1SqN4B4M_e751Lf5SdI2LFZqgaAX1cSzxQznGsESS_zpa6Xh-s4fRWv5NAAqpb2PfZcvnJBksmuooJcpzm8zg84qPL2Z2P3jLSs8WeUyoCx/s1600/IMG_2420.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibwQhPZQ8oynFhkFwfeTVhNHM0vSW9dBs9z1SqN4B4M_e751Lf5SdI2LFZqgaAX1cSzxQznGsESS_zpa6Xh-s4fRWv5NAAqpb2PfZcvnJBksmuooJcpzm8zg84qPL2Z2P3jLSs8WeUyoCx/s320/IMG_2420.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Grandma Great and her Greats!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2vR1bgLCx79oFvjhivfDyV-uyXRmm0rzw26ZnSW6o4xzfJI3C6wRcaK3tXZtmY5OiUjmeDFo4ul4vRgSBPvUTenalGDcs0hAOHZ37Oeyo6-YgcWwQUcYFQwdXo0AHGqki-Tdc5toIWDKN/s1600/IMG_2426.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2vR1bgLCx79oFvjhivfDyV-uyXRmm0rzw26ZnSW6o4xzfJI3C6wRcaK3tXZtmY5OiUjmeDFo4ul4vRgSBPvUTenalGDcs0hAOHZ37Oeyo6-YgcWwQUcYFQwdXo0AHGqki-Tdc5toIWDKN/s320/IMG_2426.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">And the with the Grands!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikb6UE3wt-yZv8C4X_MRcZ0ZBC0Hj_9T3RcjZkcn0cGDy8iiuPSECes1ZJ_Rizyfq17OZ01nNFrGoClLTlxIrhhPPvw5QMjK4a8cAKVD3goAwvqM0uyE_1UVd7d5JPhHLtyPzGKjPOa90u/s1600/IMG_2432.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="133" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikb6UE3wt-yZv8C4X_MRcZ0ZBC0Hj_9T3RcjZkcn0cGDy8iiuPSECes1ZJ_Rizyfq17OZ01nNFrGoClLTlxIrhhPPvw5QMjK4a8cAKVD3goAwvqM0uyE_1UVd7d5JPhHLtyPzGKjPOa90u/s200/IMG_2432.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cool in Daddy's Shades!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifAOqgQXcwhkQZ7G_5QGJ4ArrLw2fUAICne7rK0C2SdiUT65wmm36nfe0WIjPlM6ETyk_vrsIgr203Jvza1uyyScMSx5mD9-GvmhN2e5ZVTR_FbIf8wlPQz6u0GJ8Fj26KP9xLEV6K0TFo/s1600/IMG_2434.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="133" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifAOqgQXcwhkQZ7G_5QGJ4ArrLw2fUAICne7rK0C2SdiUT65wmm36nfe0WIjPlM6ETyk_vrsIgr203Jvza1uyyScMSx5mD9-GvmhN2e5ZVTR_FbIf8wlPQz6u0GJ8Fj26KP9xLEV6K0TFo/s200/IMG_2434.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Did someone say Cake?!</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKHBOldJZN_gXIsxjb-9J_aiav4DQbXhLiblVx29vRxLZVfsWRaFzKtctbjVHnGCyJM1b8ASUM8J1IetKNtm6_G9DwaINlCu7RBax1fdhIBvMSACABOMAg1dR_Yj3AZy9aGkCTFCvDcYrf/s1600/IMG_2460.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKHBOldJZN_gXIsxjb-9J_aiav4DQbXhLiblVx29vRxLZVfsWRaFzKtctbjVHnGCyJM1b8ASUM8J1IetKNtm6_G9DwaINlCu7RBax1fdhIBvMSACABOMAg1dR_Yj3AZy9aGkCTFCvDcYrf/s320/IMG_2460.JPG" width="320" /></a><br />
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Coleson's last day of his first year of Pre-school was this week. Since there are kids moving on to Kindergarten next year they had a graduation and all the kids regardless of age/grade got to attend. I didn't use to be such a softy but I had tears in my eyes as they played the traditional graduation song and he accepted his diploma! Which he immediately tore. Peyton's last day of pre-school was last Thursday. They didn't have graduation but I too felt sad that she was leaving such a great school, Day Spring, and will be heading off to Kindergarten in the public school system next year. When we went to enroll her last week, she said she was very nervous about going to her new school. If I have to be honest, so am I! Looking forward to the 3 day weekend. <br />
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Coleson's story was featured on the ABC 15 website this past week to promote Be The Match Donor Registry. <a href="http://www.abc15.com/news/be-the-match/blood-transplant-was-phoenix-3-year-olds-only-hope">http://www.abc15.com/news/be-the-match/blood-transplant-was-phoenix-3-year-olds-only-hope</a> . I also attended a lecture from a Neuropsychologist sponsored by Genzyme, the company that distributes the Drug (Aldurazyme) that Coleson is infused with weekly. I got to meet another MPS I mother that I have only emailed with until now. Her son has the adolescent onset form of the disease and an adult women who has the adult onset form of the disease. It was good to connect with others in the valley (there are so few of us) that are living with disease. Well, that was our week! Hope you all enjoy or enjoyed your holiday weekend.Anonymoushttp://www.blogger.com/profile/10901667187660195423noreply@blogger.com0tag:blogger.com,1999:blog-9145630931962910999.post-15847104040386934272015-05-06T18:18:00.000-07:002015-05-06T18:18:10.038-07:00Birthdays, Donor and MPS Awareness Day<strong>Birthdays</strong> - Some big ones coming up. First would have been my Dad's 75th on May 8th. The year of "firsts" is always hard and this will be no exception. I made this for Dad when I was in 5th grade. There were typically school projects for "Mother's Day" and it was convenient that my Dad's Birthday was always the same weekend so I could modify the projects for my Dad's Birthday. (My dad and Aggie didn't marry until I was in 7th grade). It's hard to read but it say's,<br />
I Love You Because...<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQ5VeRQmn9fiKlPSCyV_L84RaQPmpRwLkzN6yvkAyQdTWfhGElFE3UWvJuNZGdvDf8CDU3_uJ3lxRP7sqmpuHBBXor0aiqnQf-isIkn-uL3TGZFWrSBRCynuW8aai-wMWd6nF0T4yWlRWK/s1600/160.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQ5VeRQmn9fiKlPSCyV_L84RaQPmpRwLkzN6yvkAyQdTWfhGElFE3UWvJuNZGdvDf8CDU3_uJ3lxRP7sqmpuHBBXor0aiqnQf-isIkn-uL3TGZFWrSBRCynuW8aai-wMWd6nF0T4yWlRWK/s1600/160.JPG" height="320" width="239" /></a></div>
<strong>F</strong>amily Leader<br />
<strong>A</strong> nice guy<br />
<strong>T</strong>ough and Always Working<br />
<strong>H</strong>oping we will be right<br />
<strong>E</strong>ager to get the job done<br />
<strong>R</strong>eally interested in what we do<br />
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I might not have been a poet at 10 years old but it was pretty accurate. Still don't believe that he is not here with us to celebrate this milestone birthday....<br />
Speaking of which, my Grandma is turning 100 on May 19th. We are flying home to surprise her. It's about the only thing a 100 year old would want on her birthday. Aggie and my Dad threw her a big party last year just in case she didn't make it to 100. We never expected it was because my dad wouldn't make it. My Grandpa's Birthday is on May 9th, though he has been gone for 21 years now. I think Grandma is really looking forward to the day that they can celebrate their May birthday's together again. And to be honest I hope they are together for it next year. Not because I don't want my Grandmother here but when you have lost everyone in your immediate family, and you're 100, the days must tick by so slowly. <br />
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On April 1st, almost exactly 2 years after we received Coleson's Diagnosis (April 2nd, 2013), I received his <strong>marrow Donor's</strong> contact information. It was the day I had been waiting for since July 24th, 2013. I was finally able to thank the man who gave my son a new opportunity at life. His name is Jacob and he's from Wisconsin. Coincidentally, Coleson's middle name is J. Just "J." Originally it was for John (my Dad) and Joyce (Paul's mom) but I can't help but think there was another reason for naming him just "J." He seems to be a good guy (being a donor take's a special person) with a lovely family full of boys(3). He responded back to me that he felt a special connection as one of his own is Coleson's age. I hope to thank him in person some day. <br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiA9l5mYVrcZm-acjEr-1gcRnnoDgIyNUjmGbELIgN2EHRfUz7ikGG8OJB74WXZ-fmHpNOl70c7uc8qorXRHzjUY4bho-aDCZJ81BXdvu0HXkKaLbUE_Q4NsvWmiNt3Y7XeNoq6g2TPU5Z/s1600/044.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiA9l5mYVrcZm-acjEr-1gcRnnoDgIyNUjmGbELIgN2EHRfUz7ikGG8OJB74WXZ-fmHpNOl70c7uc8qorXRHzjUY4bho-aDCZJ81BXdvu0HXkKaLbUE_Q4NsvWmiNt3Y7XeNoq6g2TPU5Z/s1600/044.JPG" height="200" width="200" /></a><br />
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<span style="color: #351c75;"><strong>International MPS Awareness Day is on May 15. Wear purple</strong> to spread awareness and help make a difference in the life of a child with MPS or related disease! If anyone is interested in Donating to the National MPS Society, to help find a cure for my son and others with this illness, here is the link: </span><a href="http://mpssociety.org/">http://mpssociety.org/</a><br />
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We are making our annual summer trip plans including our week long tour of the Twin Cities Children's Hospitals. I think we have to go to 4 different ones to see all of his specialists. He may have his heart surgery while we are there and hopefully we will hear that he will not require any other surgeries in the short term. We are also excited to help host the 2nd annual RMH dinner with the help of my Minneapolis based coworkers! On July 24th again as luck would have it!<br />
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We held a Kentucky Derby/Fight Night celebration at the Ranch over the weekend. My dad's truck proved to be one of the more entertaining "toys" to play on. I think my Dad would be happy that it is bringing so much joy to my husband and my kids! (Which in turn, makes me happy).<br />
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Another bit of bright news in April was that I received a promotion at work. My new title is Director of Contracts Technical Solutions! I am so thankful to work for such a great company and a great function and a great team. I need to finish building out my staff but then hope that to make some significant and exciting achievements. <br />
<br />Anonymoushttp://www.blogger.com/profile/10901667187660195423noreply@blogger.com0tag:blogger.com,1999:blog-9145630931962910999.post-72137012572324142512015-03-24T06:52:00.001-07:002015-03-24T06:52:37.449-07:00No News is Good News<br />
<span style="font-family: Calibri;">Many of you have called to check up on Coleson (and the rest
of us </span><span style="font-family: Wingdings;">J</span><span style="font-family: Calibri;">) recently so I am making
time to post. The saying goes, “No news is Good news” and for now, I
would say that is pretty accurate. </span><br />
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<span style="font-family: Calibri;">We have enjoyed the last few months, being somewhat “normal”
enjoying the Arizona winter outdoors and in the pool. Last weekend we
spent most of the weekend in the pool and Coleson, who is fearless around water
just like his big sister, is making great progress. He can swim under
water the width of the pool, he can get his head above water briefly and knows
to turn and swim to the stairs when he jumps in and yes, he does jump in!
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<span style="font-family: Calibri;">We are staying healthy for the most part despite the measles
outbreak and the flu vaccine not totally hitting the mark. Both Coleson
and Peyton had some bad intestinal issues a couple weeks back and I thought not
only did Coleson have a C.Dif flare up but that Peyton got it too, but
his labs came back negative so I think we determined it was due to lemons.
AZ Citrus has had some “bugs” this year and I think we were impacted by
it. I also had quite a scare after Coleson got his second round of
DTAP and Prevnar vaccines. That night he couldn’t walk on one of his legs
and really had me concerned. Wouldn’t you know that Paul happened to be on
business travel that night. Thankfully a good friend and neighbor, Teresa
a Physical Therapist, was home and she evaluated him. Without knowing he
had had a vaccine, she confirmed it was his right leg that he was favoring and
not his back or hip (which I was fearful of). We gave him some Tylenol
and by the next morning he was fine. He has never had a bad reaction to a
vaccine before but he was pretty tense by the second shot which was in his
right leg. I know there is a lot of controversy around vaccines and with
both kids I was slow to immunize. Neither had a negative reaction until
now. Unfortunately, Coleson has to get them all over again since his BMT.
We have been to allergists, ENTs, Endocrinology, dentists and others over the
past few months. Contemplating putting tubes in his ears again, since
both have fallen out now, watching his thyroid level and determining when to
get his PDA (his hole in his heart) fixed. I’m waiting for University of
Minnesota to schedule all of his appts to determine if he will need to be
sedated there and if so, probably just wait to do the PDA there in July. </span></div>
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<span style="font-family: Calibri;">Coleson is also starting to potty train. I’ve decided
to do the “3 day Challenge” with him but I never have 3 days to devote to doing
it. Last weekend we gave it a strong effort (in between pool time that
is) and he seems to have made progress even going on the potty at school
twice. We didn’t have much opportunity this past weekend so we are
targeting Easter weekend to give it another solid try. </span></div>
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<span style="font-family: Calibri;">I’ve done some travel. First to Puerto Rico in January
to see my team that lives there. It has been 4 years since I’ve been
there and it was very good to do some team building with all my team members (9
in Puerto Rico). I also got to see Pat and Theresa (neighbors from above story)
who were there for winter baseball (Pat is a baseball player).
Also, Paul and I took a surprise vacation to Cabo with my sister and
brother-in-law in February. I’m not sure I was ready to “plan” a trip so
far away from the kids but this literally just fell into place last minute
after Lorin got a call a week before saying they had overbooked her hotel and
they were moving her to another hotel. At first she was skeptical but
after talking to some family friends found out it was a 3 bedroom Villa at a 5
start resort. She called us and before we knew it, we had nanny
coverage for the weekend and our tickets booked. It was a nice long
weekend and this resort was within the same family of resorts we stayed at when
I was 6 months pregnant with Peyton (and loved by the way). Had I
had months to think about the trip, I would have found excuses not to go but
literally it was too good a deal to pass up. </span></div>
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<span style="font-family: Calibri;">Grandma has also visited twice. The first time she
drove my dad’s, “Big Red Truck” down here with a friend to give to Paul.
It was the one thing we asked my dad for prior to him passing and he gladly
gave us. Paul’s truck (F250 King Ranch) was stolen from the Honeywell
parking lot 6 years ago (again when I was pregnant with Peyton) and the Honda
Accord he got in replacement has not had the same feel. I know my Dad
always wanted Paul to have a truck again and to know his truck is at “The
Ranch” I think made my dad happy… and it makes Paul very happy too. He
loves to drive the truck and the kids love to ride in the, “Big Red Truck” </span><span style="font-family: Calibri;">too. </span></div>
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<span style="font-family: Calibri;">Her latest trip was just last week, the normal time she and
Dad would come to AZ. This time a bit more emotional as Dad was traveling
with her via vials. One to be spread at the Ranch and one to be
spread in Sedona. It’s ironic that my dad was not a traveling man, that
is not until later in life when Aggie finally got him to go on adventures with
her, that he wanted a little bit of him to be spread at his favorite places
including The Ranch, Sedona and Tibey Island. We just felt a bit rushed
to try to do this during this visit though and decided to wait until her next
visit over Christmas. So for now, Dad is now watching over us for a while
here.</span></div>
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<span style="font-family: Calibri;">Peyton is doing well, still enjoying gymnastics, swimming,
horseback riding and school. We have now added dance to this mix as
well. Freestyle – which is more suited for her personality. She is
5 ¼ now as she will tell you and looking forward to going to Kindergarten at Waggoner
next year. She is such a good big sister which Aggie and I got to witness
when Coleson went with her to Dance class. She made sure that Coleson was
included in every way. I think she was more focused on Coleson than
herself. She is so proud of him and I of her. She often likes to
sleep in his room with him (that is when he actually sleeps there
himself). After potty training, these will be the next 2 things we tackle
with him. </span></div>
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<span style="font-family: Calibri;">Paul did well at the Arabian horse show this year, getting 3<sup><span style="font-size: x-small;">rd</span></sup>
place in the Novice division overall. We’ve also been able to spend time
with some friends this year (date nights even) as we don’t have to be as
protective of Coleson’s health like we were last year. I’m still
experiencing some funny sensations in my heart.. I don’t know if there has ever
been a time I have been fully confident that my pacemaker is working as well as
I’d like it to. A close family friend recommended a cardiologist and
after a stress test, he thought perhaps my sinus node is starting to give
out. There are 2 “nodes” in the heart and currently my pacemaker is only
acting on behave of the AV node (it’s what carries the current from the top
heart chambers to the bottom chambers). I am currently on a 30 day
holter and event monitor. So I am wired up and hoping that it is not my
sinus node giving out. I am fully dependent on the pacemaker now so I
don’t know why I am fearful that my sinus node isn’t working, I guess I have a
false sense of security with only 1 node being broken. If for whatever
reason my pacemaker gave out though I would be a world of hurt. </span></div>
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<span style="font-family: Calibri;">I’m looking back at the pictures from last year that make up
my 2015 calendar, I had titled March, “Clowning Around” for the picture of the
kids with Ronald at the RMH next to the ambulatory building at PCH. We spent
almost 1 full day/week there last year at this time getting his infusions and
his weekly checkups. After 3 months going around in circles with the insurance
company and his Physical Therapy and Occupational Therapy providers, I finally
closed out ~$2600 in unpaid Physical Therapy bills. I said
this last year but I really hope 2015 is less eventful than 2014. </span><span style="font-family: Calibri;"> </span><br />
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Anonymoushttp://www.blogger.com/profile/10901667187660195423noreply@blogger.com0tag:blogger.com,1999:blog-9145630931962910999.post-43151892671640641202015-02-06T08:02:00.003-08:002015-02-06T08:02:58.807-08:00BMT Day Video Post - LinkFor some reason, the video link did not appear in the email that came out so I am reposting the URL:<br />
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<a href="https://www.youtube.com/watch?v=DJcLoBmFp4o">https://www.youtube.com/watch?v=DJcLoBmFp4o</a> <br />
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Sorry, I'm not an expert on Blogging and YouTube! :)Anonymoushttp://www.blogger.com/profile/10901667187660195423noreply@blogger.com0tag:blogger.com,1999:blog-9145630931962910999.post-76828145133356163452015-02-05T01:58:00.001-08:002015-02-05T01:58:53.306-08:00Coleson's BMT Day Video<iframe allowfullscreen="" frameborder="0" height="344" src="https://www.youtube.com/embed/DJcLoBmFp4o" width="459"></iframe><br /><br />
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It's taken me a long time to put this video together of Coleson's BMT day. It's 9 minutes long and cannot be played via iPhone, so it needs to be viewed from a computer. The first half is filled with all of our BMT day supporters (friends, family, colleagues) in their Coleson's Courage T-shirts which was organized by one of my best friends, Emily. I was surprised to start receiving these pictures the day of his BMT and it helped knowing there were so many people lifting us up on that day. If there is a missing photo of a Coleson supporter, please let me know and I can easily add it to the video. The second half of the video is the BMT and post-BMT days. The actual transplant itself is a blood transfusion so though significant, there isn't much to it. It's the days of Chemo and other protocol leading up to it, its the dark days afterward where his own cells are no longer reproducing yet his new cells aren't either, it's the days, weeks, months, years after BMT that make his one of the most incredible journeys. <br /><br />
<br /><br />
So much has changed since this day, mostly for the better, but as I play it, I see two angels who were with us that day but are not today. A reminder that life is precious no matter how old you are, no matter what your battle. Anonymoushttp://www.blogger.com/profile/10901667187660195423noreply@blogger.com0tag:blogger.com,1999:blog-9145630931962910999.post-41160528359406981832015-01-27T17:58:00.002-08:002015-01-27T17:58:35.041-08:00Surviving Disney World, MPS Conference and the Holidays<div class="MsoNormal">
Several of you have mentioned my blog recently and it’s been
a while since my last post. I decided to try to take as real of a
vacation as I could this Christmas and that included a vacation from social
media, technology, etc. Most of my vacation time is spent in waiting
rooms, Dr.s Office, hospitals, etc. and after the past year (past two years
really), I needed to focus on my family and myself. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsbP1nCcp8H6cspci5uQWx0kCkq-j9d-Nkz9iGfGGGHG3BAubgYUhbyaRD_vlsk0WQTfzNqrmWh8f__3qQX8kQIuaTddCC0jQIAi6Tw0rEDjtO9_Ah9yBxqhmYvph5KkxC0Ddkj-FFrVcV/s1600/IMG_0931.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsbP1nCcp8H6cspci5uQWx0kCkq-j9d-Nkz9iGfGGGHG3BAubgYUhbyaRD_vlsk0WQTfzNqrmWh8f__3qQX8kQIuaTddCC0jQIAi6Tw0rEDjtO9_Ah9yBxqhmYvph5KkxC0Ddkj-FFrVcV/s1600/IMG_0931.JPG" height="200" width="132" /></a>I never updated the results of the “Be The
Match” run/walk. Thanks to many of you, I was the second place individual
fundraiser with $1245 and Coleson’s Crew came in 4<sup>th</sup> overall with
$2450. We had a good team of walkers join us during the race including
Coleson’s BMT brother Caleb and his family from Illinois. It was a pretty
warm day and Coleson decided he didn’t want to be in the stroller so we carried
him the 3.1 miles! In November my good friends Jenn and Janice along with
Sole Sports put on a Ronald McDonald House dinner, (I think that makes 5 RMH
dinners in Coleson’s honor in 2014) and Sole Sports wants to be involved in
next year’s Be The Match run/walk. I’m looking forward to their
support. </div>
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We had a fairly good November (as I recall it went by so
fast). We started out with the neighborhood garage sale and I finally said good bye to all my infant stuff, a bittersweet event. Most of it I ended up donating to Maggie's Place, a home for pregnant and new mom's who have no other place to go. I also donated some of my work clothes as Maggie's place helps them find jobs and they need professional attire. That same day we had Peyton's 5th Birthday Party @ Pump It Up, a bounce house place that seems to be "The Place" for birthday parties this year. We've gone to about 6 or 7 in the last 6 months. I can't believe she's 5 already! She got to bring "Socko" the class sock monkey home for the weekend and we enjoyed several adventures including quad riding, horse riding, eating out (I posted about that awful day). We also go to enjoy Thanksgiving with our good friends the Richters. <br />
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December, I did the annual "Hot Chocolate Run/Walk" with some of my good friends. The run's charity is the Ronald McDonald House so it's another way we are able to "give back" and at the same time have a couple of hours of much needed girl time! Although we have learned that only $.75 goes of the race fee actually makes it back to the RMH which is a bit disappointing. <br />
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Coleson had his 4 top front teeth extracted. Going
through the BMT process and the chemo makes the kiddos teeth weak, thin and
prime for cavities. Through much of the BMT, their gums are swollen such
that you can barely see the teeth, much less brush them. So this
Christmas, he really did want his, “two front teeth” plus the next two as
well! Peyton was curious if the tooth fairy was going to come and how
much money she was going to leave him. However, I did not want to take
the excitement away from Coleson of losing his first tooth and putting it under
the pillow so I told Peyton that I was going to ask the Tooth Fairy to wait
until he did lose his first tooth naturally and then we would put all of them
under the pillow. It was funny to watch Coleson explore his gums with his
tongue and to watch all the silly faces that resulted from it. He had a
hard time keeping binky in his mouth too so I was hoping we would be able to
get rid of it for good. However, he’s gotten used to the gap now and has
found a way to keep binky in, although it does fall out more at night. He
doesn’t look that much different since his teeth were so little and still
partially in the gums yet anyway.<br />
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He had to have it done at Phoenix Children’s Hospital under
sedation and so it was a very nerve wracking procedure for me. I actually
went into the OR room and held him as they masked him which was a bit tough for
me. However, he is starting to remember what is about to happen when the
nurse brings out the Purple or blue hospital PJs for him to change into and I
hope it comforted him just a little to have me hold him during that scary time.
During the holidays different organizations and groups sponsor and decorate
Christmas trees in the hospital. We were in a different OR than the
normal OR and there was only a single sponsored Christmas Tree. As luck
(or fate) would have it, it was the Sole Sports sponsored tree. It made
the process a little easier knowing our friends were “there” with us! </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdppPZst7fSZC35KDfE-faXF2yRol8zf_Eu8oItR-JwFn4G8ci1qOzBJFJH8mtbRdaf0w_wrancsSy1cZAjFCYZ94ohRDvTSGpDhwZw-_gJy6_QGVIUysFQAHxZJ4dXeT8pI6QVaENhLsL/s1600/IMG_2257.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdppPZst7fSZC35KDfE-faXF2yRol8zf_Eu8oItR-JwFn4G8ci1qOzBJFJH8mtbRdaf0w_wrancsSy1cZAjFCYZ94ohRDvTSGpDhwZw-_gJy6_QGVIUysFQAHxZJ4dXeT8pI6QVaENhLsL/s1600/IMG_2257.JPG" height="133" width="200" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwudxVQTmbl12O3KRs1eYaiosExeP621jLdqSuKL548heqgmsWg49Hy9YSUbm4xVA_XzDY3pcmXhVUh3jWV8qcYteBkJAvzTcYLgI4Btg8T6zxn0lm6B7tkREG57OtJnD2bl1AU-oJbdSq/s1600/IMG_2314.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqXsGRjhUgy8vgsXR76Iw4ds8ntvJ2OqPRfRs46SHcGL_lU4tmwl_zIrWq1MBJ1EhwfUnGLFEu8ZrZWNQ5quIpCqNh61-d4Mm0hdG29k2P66kdGRnE2P5Q6KheokHtXEVPwHos1DuIz60B/s1600/IMG_2323.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqXsGRjhUgy8vgsXR76Iw4ds8ntvJ2OqPRfRs46SHcGL_lU4tmwl_zIrWq1MBJ1EhwfUnGLFEu8ZrZWNQ5quIpCqNh61-d4Mm0hdG29k2P66kdGRnE2P5Q6KheokHtXEVPwHos1DuIz60B/s1600/IMG_2323.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqXsGRjhUgy8vgsXR76Iw4ds8ntvJ2OqPRfRs46SHcGL_lU4tmwl_zIrWq1MBJ1EhwfUnGLFEu8ZrZWNQ5quIpCqNh61-d4Mm0hdG29k2P66kdGRnE2P5Q6KheokHtXEVPwHos1DuIz60B/s1600/IMG_2323.JPG" height="133" width="200" /></a></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwudxVQTmbl12O3KRs1eYaiosExeP621jLdqSuKL548heqgmsWg49Hy9YSUbm4xVA_XzDY3pcmXhVUh3jWV8qcYteBkJAvzTcYLgI4Btg8T6zxn0lm6B7tkREG57OtJnD2bl1AU-oJbdSq/s1600/IMG_2314.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwudxVQTmbl12O3KRs1eYaiosExeP621jLdqSuKL548heqgmsWg49Hy9YSUbm4xVA_XzDY3pcmXhVUh3jWV8qcYteBkJAvzTcYLgI4Btg8T6zxn0lm6B7tkREG57OtJnD2bl1AU-oJbdSq/s1600/IMG_2314.JPG" height="133" width="200" /></a><br />
And then there was Disney World! (And the MPS Conference
too.) We had a great first day at Disney World with the kids.
Peyton got to ride Splash Mtn. and Thunder Mtn. (but not Space Mtn. since
she wasn’t tall enough). The kids also got to meet Cinderella, Rapunzel
and Tinkerbelle (Paul’s favorite) but if you ask Peyton her favorite part was
going to Bippity Boppity Boutique where she was made over into a
princess. I don’t know how she sat still through the hair as she doesn’t
sit that well for me when I do her hair… She however embraced the part and
curtsied thereafter to anyone who spoke to her. I was feeling like we
conquered the first day pretty well and were right on track to make it back to
the hotel to check in for the conference on time until she wanted to go on the
new 7 Dwarf’s mine ride. She and Paul left Coleson and I at the Dumbo
play structure (a hidden gem we discovered way too late in the day). 1
hr and 15 mins later… needless to say, we were a little late to the dinner and
missed getting back out of the hotel for Mickey’s Christmas. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEUopmlxA0Eiv7MXjYZ1ZdXNAbMchnP2poXyf2wOvvLgxG89dtF0liffHdLagwyofdaeTmuGwqtxIkIskaP6G9962NNOd_O_YKoOnAqXJUflfOy5BjPknTrhO6aFiqxwo5tK9MMII8VkE4/s1600/005.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEUopmlxA0Eiv7MXjYZ1ZdXNAbMchnP2poXyf2wOvvLgxG89dtF0liffHdLagwyofdaeTmuGwqtxIkIskaP6G9962NNOd_O_YKoOnAqXJUflfOy5BjPknTrhO6aFiqxwo5tK9MMII8VkE4/s1600/005.JPG" height="200" width="150" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEif_j3zB06LX4N9mU5fpaHtIYILGrLj7rPiWOYkrkjY8MRcg8BR-W0P4UjJ0nvBNeWqYa7MxUgbBIYT9BdodaW8pAV60Jqe7Oxqik0iesZBiNHTmyNMrTuwfUy6vqV_C_40sfkW0SqmtJI2/s1600/013.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEif_j3zB06LX4N9mU5fpaHtIYILGrLj7rPiWOYkrkjY8MRcg8BR-W0P4UjJ0nvBNeWqYa7MxUgbBIYT9BdodaW8pAV60Jqe7Oxqik0iesZBiNHTmyNMrTuwfUy6vqV_C_40sfkW0SqmtJI2/s1600/013.JPG" height="200" width="150" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwBn1cjqnSAsD4bd_bFA69j3ghum-pn8jRLsEL9_dpUSiT5czFhcODOHV7BgfiqDiQ0j2hN2aoN8XE1w3Ij4wT5ZTXLPxIO1mjT5FQIOFZ855hqqnwRbjfYg74fK4ODvR0SF9KqBzTW7X7/s1600/IMG_2321.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwBn1cjqnSAsD4bd_bFA69j3ghum-pn8jRLsEL9_dpUSiT5czFhcODOHV7BgfiqDiQ0j2hN2aoN8XE1w3Ij4wT5ZTXLPxIO1mjT5FQIOFZ855hqqnwRbjfYg74fK4ODvR0SF9KqBzTW7X7/s1600/IMG_2321.JPG" height="133" width="200" /></a>The conference came and went so fast and like Disney world,
I think you have to go there once to determine how to get the most out of it in
future years. We got to reconnect in person with some of our MPS friends
which being that we are all so far apart was probably the best thing about the
conference. I also enjoyed meeting all the rest of the MPS 1 BMT families
that I did not yet know and hearing their stories. I also enjoyed the
talks from the Doctors and Researchers about new trials and advances in the MPS
world. Being an “orphan” disease means MPS does not get a lot of funding
and grants and I am sad to hear that much of the research/trial funding is soon to
expire. Donating to the National MPS Conference is one way you can help
keep these trials and research alive. The conference is a very
overwhelming and heartbreaking experience at the same time. Not all of
the MPS diseases have treatments, some treatments have just become available
for some of them and in general no matter what type of MPS one has, it is a
nasty disease. We are in the lucky group… MPS 1 kids who have BMTs.
(If you can imagine we are lucky). There are families there who have lost
their kids or who are watching their kids regress day by day knowing that one
day the regression will stop forever (but not in the positive way). I too
know that Coleson’s time here is shortened than the average person but we have
hope that he will make it to his 20s and maybe into his 30s. Of
course we still have hope that it will be much longer than that but we don’t
have any evidence that that is possible yet. So going to an MPS
conference comes with mixed emotions. </div>
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Also at the conference the 24 hr stomach flu was going
around. Coleson got it Thursday night but was good to go by noon the next
day while Paul got it Saturday morning and couldn’t make it out of bed the
entire day. I took the kids and met my family at Magic Kingdom but by
noon I wasn’t feeling so good myself and left Peyton with my family and Coleson
and I spent the rest of the day in bed as well. I didn’t have it as bad
as the rest but it made packing for our 5:00am departure time a tremendous
task. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsj_ZFMiyrv9Pcd_rV415hJ9m7Q2VoXshOzeDn9G2xBf0MkWidKulxGFStMH2Pqx3pqodmy9qkNHGB7vDxlscgKgkbdUKHwORGJj2_2c0FUOWjM06ReH5XTC3Dl4VYMuJ583L6CdV1EHUH/s1600/002.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsj_ZFMiyrv9Pcd_rV415hJ9m7Q2VoXshOzeDn9G2xBf0MkWidKulxGFStMH2Pqx3pqodmy9qkNHGB7vDxlscgKgkbdUKHwORGJj2_2c0FUOWjM06ReH5XTC3Dl4VYMuJ583L6CdV1EHUH/s1600/002.JPG" height="149" width="200" /></a>Then we headed to Michigan for Christmas. The first
without my Dad. And though we carried on just as if he was there, there
was obviously a big void. We made it through without a lot of tears but my sister, Jae, made us memory books of Dad and Aggie had Teddy Bears made out of my Dad’s
flannels and overalls for all the grandkids which made holding back the tears
pretty difficult. Included with the bears were pictures of each kid with
Grampa wearing the clothing the bear was made from which made the bears extra special. </div>
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We made it back to AZ to enjoy a week’s worth of vacation
and I feel like I was able to get a lot of things done that I’ve had to put off
over the years. We were blessed with more gifts from “Coleson’s Friends”
which is very helpful when we are approaching the new year and a new set of
medical deductibles. We basically hit the Maximum out-of-pocket costs
within the month of January so we are very appreciative of all of Coleson’s
Friends, especially O&C who have become our extended family and biggest supporters. </div>
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I realize this blog has gotten too long to include the
events of January so I will have to pick this back up in another week or
so. </div>
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