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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.

Thursday, May 26, 2016

New Surgery, New Plans, New Attitude

HOne 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. 


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. 


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. 


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. 


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.


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. 


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. 
The white is the pooling fluid and the "dam" where the skull meets the chord.


Tuesday, May 24, 2016

It'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. 

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. 

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. 

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.

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. 

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.

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. 

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. 

Tuesday, May 3, 2016

Help Support MPS Research with Triple Match Now - 3 Weeks til Surgery

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, “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.”   If she can live by this, then I should be able to as well.

 

With that said, there is a great opportunity to support MPS research (something that doesn’t get a lot of attention) and have it TRIPLE MATCHED.   If you ever have thought about donating to MPS Research this the time, triple matches don’t come often!  Triple Match ends this Saturday.

               
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!

  1. Text the word "courage" with a donation amount to 41444.
  2. Donate through Penn Medicine to #TeamMPS. -  This is the best way so you can learn more about MPS and this
  3. Donate through PayPal.
     
    May 15th 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.
Here is a flashback from 3 years ago of Peyton Singing the "Brave" song for Coleson during BMT.

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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.




 




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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.