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, April 6, 2017

We Have a Date!

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 23rd 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. 

videoYou might have noticed that this is my first blog entry in a while.  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:


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.  

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. 


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.  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! 


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.  


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.  


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. 


Will continue to update as we start our travels.  Thoughts and prayers are appreciated.

Wednesday, August 17, 2016

Back to Reality

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”.   


The kids are back to school, Peyton in 1st 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. 


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. 

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. 


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.  


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. 

Sunday, June 5, 2016

Surgery, 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.

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.

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.

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?! 

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. 

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. 

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. 

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. 
Paul says' Chicks will dig this scar when he's older!  This chick hopes it disappears!

Wednesday, June 1, 2016

Quick Update

Surgery 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.   

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.