Welcome

Welcome to Coleson's blog. We've created it to keep friends and family updated on the journey we are about to embark on.. We appreciate your support and words of hope and encouragement during this time when it matters most.

Wednesday, April 20, 2016

The Countdown Begins (30 days & counting)


30 days until we leave for Minneapolis and 34 before Coleson has his surgery (May 24th).  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 24th) 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. 

 

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. 

 

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. 

 

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. 

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. 

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.




 




video
 

Friday, December 11, 2015

Happy Holidays

Happy Holidays to one and all!

 

We have had a good 4th quarter here at chez David.  We started the quarter with a trip home in October for fall break.  October 6th 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. 

 

The rest of the quarter was inundated with birthday parties, including Peyton’s 6th.  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. 

 

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! 

 

We have scheduled his surgery for next year for May 24th 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. 

 

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:

 

  1.  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.  Kyrene.org/taxcredit, select Waggoner Elementary. 
  2. Also, you can sign up on Be The Match   (www.bethematch.org) 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.        A Bone Marrow Transplant parody of Taylor Swift's Bad Blood

Hope your holidays are merry and bright!

Wednesday, September 23, 2015

From Be The Match to Walk For Wishes

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.
 
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.
 
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 4th birthday.   I wonder what Coleson will wish for as he’s blowing out his candle this year. 

 There 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.
 
To join our team and/or donate to MAW, click the link below: Walk for Wishes Donation Page

 

Saturday, September 19, 2015

Wheels on the Bus....

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.
















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. 

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. 

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?  :)










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. 









Tuesday, July 28, 2015

The Good, the Bad and the Ugly

I believe I had a prior post with the same title… C’est la Vie! 

As promised, a medical run down of our week in Minneapolis.  You’ll know why I separated these posts about half way through it. 

 The Good
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. 

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.
Wes Miller - much better photo than 2 years ago.
Engraftment - 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.

Enzyme levels – 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).

GAG – 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.

Antibody Level – Is he building antibodies against the enzyme, rendering the transplant not effective?  This came back negative (which is good).

 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!


Paul Orchard, BMT, Paul and Coleson with his Recycle Truck
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 5th “procedure” on our first day and it’s not even noon!

 
 
 
 
 
 

We will miss Teresa!  Good Luck at NP school.

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!
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

 The Bad
… 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.

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.
 
The Good
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.

 Technical Solutions Difficulties (the bad)
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!

Customer Service (the good)
However, the receptionist provided great customer service which always makes these things a little easier - right HW colleagues?  J 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!

Are you exhausted yet?  We are only on Tuesday people!

The Ugly
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!  J  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?)   

 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)!

What day are we on again?!

The Bad
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 (3rd time is a charm)!

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!    

 The Good

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…

 
The really UGLY
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.


Anyone have a rental house in the Minneapolis area?  J





Monday, July 27, 2015

A 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. 

Can't you see the resemblance?!
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.
 
 
Happy 2 year Re-birthday Coleson (July 24th)!
 


Peyton just can't resist climbing on RM
Finally one without climbing!

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. 
Ari, Tia, Brayden, Coleson
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! 
 
 
 
 
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! 
 
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. 

I'll give you all the gory medical details tomorrow.  It's time I put my kids into bed!





 

Friday, May 22, 2015

Graduations and Celebrations

Not sure any actually made it into his mouth!
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. 
Looking Great at 100!
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. 



Grandma Great and her Greats!

And the with the Grands!


Cool in Daddy's Shades!
Did someone say Cake?!




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. 

Coleson's story was featured on the ABC 15 website this past week to promote Be The Match Donor Registry.  http://www.abc15.com/news/be-the-match/blood-transplant-was-phoenix-3-year-olds-only-hope .  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.