Journal

Journal entry by Christine Tippett

We kept up with periodic Xrays and Cooper wearing the neck brace until FEBRUARY.  (As a reminder, Cooper had surprise spinal decompression surgery in June 2019).  For the last few months in the brace, the neck brace was for “high risk” activities only, so he could sleep and do school work without it.  Unfortunately, that meant some days he got on the bus and all the way to school without the brace, because we had lost it in the house somewhere in the previous 12 hours.  But it was always found again and brought to school before recess!

The other wonderful thing that happened in February is that Cooper was matched with Velocity, a Skilled Companion service dog from Canine Companions for Independence!  She is just the sweetest.  She can help Cooper “tug” his socks off, ”cover” his legs when they ache at infusion, “get” things off the floor, “bring” the hockey puck after Cooper hits it into the yard, “push” drawers and doors closed, and we are training her to “find mom” so that she can come find me when Cooper is in his body cast this summer and needs mom.  She is the best snuggler, the slowest walker, and the hairiest creature I’ve ever encountered.  She gets to accompany us to Cooper’s weekly infusions, all the specialist appointments, and I believe she will accompany us to Delaware again this summer.  That’s a bit muddy right now, but I pray it will be resolved soon.

So, looking at back journal entires here, you’ll see we were preparing for Cooper’s lower extremity reconstruction this time last year.  Thankfully Dr. Mackenzie discovered Cooper’s severe spinal compression and we needed to address that ASAP instead.  Now we are back to where we were, preparing to reconstruct his hips (they are missing the hip shelves that keep the ball of the hip in the socket), put eight plates in his knees (so that they straighten as he grows) and align his ankles.  The combination of these two surgeries (right side June 9 and left side June 16) will leave Cooper in a spica cast for 7 weeks.  Then he’ll get the cast taken off and need to learn to walk again while going back to school (if in-person school even happens this year) most likely in a wheelchair and then a walker.  I understand that he’ll be able to walk again on his own by around Christmas.  But from then on, he will be free of the constant leg pain, and his gait will be better.  An overall quality of life improvement.  

The muddy part is that COVID hit.  Currently Nemours/Alfred I duPont Hospital for Children’s policy is that ONE parent gets to be admitted with a child admitted for surgery. No tag teaming to go somewhere else to rest, shower and come back.  No chance to let the dog out to pee or exercise.  THAT SUCKS.  And I get it - better safe than sorry.  We are hoping the policy changes before we go or that we get special dispensation.  Due to the visitation restrictions and COVID in general, we also decided that the only people traveling for the surgeries will be Cooper, myself, Brian and hopefully Velocity.

In other Cooper related news:
  • He got an eyeglass prescription that WORKS and he is wearing his glasses when he needs them!  This didn’t come without a lot of arm waving, ruffled brows, possibly a raised voice and angry emails on my part.  Advocating for your kid can be tough.  And even tougher when you don’t understand the terms, the biology and the science that makes it work.  
  • Cooper also picked up a pair of fabulous hearing aides that he wears all the time.  His hearing has fallen completely out of the “normal” hearing range.  He loves that they are green and blue and that they are Bluetooth enabled ear buds that he can listen to music with.
I’ll set up a meal train for when we return.  Returning!! That’s a foreign concept. We bought one way tickets there.  If there is anything we learned from last year, it’s to wait and see when and how we’ll be able to travel and THEN buy tickets (or a one way rental car) so we aren’t slapped with change fees and headaches just trying to get home with a kid who just had major surgery.

If you feel compelled to help with travel expenses (don’t worry - we’ve hit his out of pocket max the first week in January!! These two surgeries are FREE!) We are humbled to accept GrubHub gift cards, Hilton points (to help pay for our lodging at the Extended Stay near the Hospital), or Venmo (@Christine-Tippett)/ cash/ PayPal for food, car and more travel (home from this surgery as well as another round trip to get he cast off).

As always, I’ll keep you up to date here on Caring Bridge.  Thank you for your love, prayers, support, bottles of wine, meals, donations, laughs, shoulders to cry on, texts, emails and camaraderie during our journey.  It’s far from over. 
Patients and caregivers love hearing from you; add a comment to show your support.

Comments Hide comments

Show your love and support for Cooper.
Make a donation to CaringBridge to keep Cooper’s site up and running.

Journal entry by Christine Tippett

Today marks FOUR weeks since Cooper’s surgery.  It’s all so surreal.  I’ve got this 6 year old boy running around the house, playing games, playing outside and arguing with his sister - seems exactly like any other 6 year old on summer break, but Cooper’s wearing a neck brace.  He’s adjusted spectacularly to the neck brace.  Occasionally the stitches on the back of his neck itch, and we take the brace off to put a cool washcloth on the back of his neck.  He rarely complains about his hip, where they took the bone to graft to his vertebrae.  He often complained of headaches, but that’s lessening as well.  It’s just such a blessing to be home, and have life back to “normal”.  And just like “normal” we are back to weekly infusions, play dates, and we’ve even planned a trip this summer!  For FUN!!  Since Cooper isn’t in the body cast we were anticipating, we’ll take advantage of airline travel being easy and visit family in the Pacific Northwest next month.  
Cooper hasn’t been as self-concision about the neck brace since we’ve been home, so we’ve been out and about a bit.  He was excited to play mini-golf with Papa and Grandma last weekend.
Cooper will have Xrays of his neck once a month, starting today, until the beginning of September.  We’ll send the Xrays back to Dr. Mackenzie at Nemours to review.  We think he’ll only need 3 months total in the neck brace. 
That’s all that’s new from here.  This recovery seems to be pretty easy?!?!
Thank you for your thoughts and prayers.  Our current prayers are for flawless healing as expected and continued recovery.

Journal entry by Christine Tippett

Today Cooper had a great day. We went to play at a park, and he made his way around the playground by holding someone’s hand. When we got “home”, he showed off his pitching skills (see the video). Time for us to get home so we have a back yard for these kids to be kids in!
Don’t be concerned at the lack of upcoming journal posts. Now that Cooper is doing so well, I’m going to take a break. I’ll update as new things happen. 
In the short term, we will have xrays once a month to monitor Cooper’s healing neck. We plan to be in the neck brace for three months. 
We’ll come back to Wilmington next summer to have the surgery we planned on this summer - hips, knees and ankles. Honestly, I think we dodged a bullet this summer. Not only did we correct a potentially life-altering situation (damage to his spinal cord), but this recovery will be MUCH more enjoyable for Cooper than the next one.  🙄 
Thank you for the continued prayers and well wishes. Although we’ve found a happy spot now, this journey will never be over. As you can see from the past two weeks, we never know know what to expect next from this rare disease. But for right now, we expect a summer full of love, play and giggles. 

Journal entry by Christine Tippett

A low key and good day here for Cooper and his Troopers. 
Cooper played with Campbell, wrote books, colored and caught a bit of screen time before we went for another round of mini golf this afternoon. Although we pushed him to the course in his wheelchair, he quickly abandoned both that and his walker and took grandma’s hand to walk around the little course. Back “home” for dinner and now cheering on the Blues in game 7 of the Stanley Cup Finals.  
Cooper needs only occasional ibuprofen and Tylenol. He’s been in a great mood all day.  Thank you for all the love and prayers. For the first time in this journey, I feel like we are OK. 

Journal entry by Christine Tippett

Cooper is uncontrollably giggling next to me in bed, and it’s 11:14 PM local time. The day certainly didn’t start this way. Last night, Mom called every store in a 15 mile radius trying to find a size 4T Phillies jersey, or any baseball jersey, for that matter! Baseball jerseys seem to be a good fit for Cooper in his neck brace, and we came here with only one jersey. So this morning we drove 30 minutes to a K-mart that had a size 4T Phillies jersey. Unfortunately it was too small (size “4T-3X”), but Cooper was in a terrible mood anyway. He had freaked out again, and didn’t want to leave the apartment because he’s afraid people will make fun of him for having a neck brace.  So our grandiose plans of Kmart, lunch and celebratory donuts turned into Kmart and home to sulk. There had been glimpses of happy Cooper up to this point, but he’s not really been back to his usual self. He complained of headaches several times a day. He was grumpy and sad. So we decided to take him off the big pain medications, stick only with Tylenol and Ibuprofen, and see where that got us. I’ll tell you where that got us - it got us four hours of fun at the Blue Rocks game tonight.  We’ve made friends with the staff who visited the hospital, so they had tickets for us. 💜 It was “Bark at the Park” night - fans brought their dogs. It was awesome. A perfect night at the ballpark.

Journal entry by Christine Tippett

Today at physical therapy, the 6 year old we’ve been gingerly pushing around in a wheelchair asked if he could dunk on the basketball hoop, then play hockey. After a quick examination, the therapist told Cooper to stand up and hang onto his walker. She gave him pointers on how to use the walker, then they WALKED over to the mini basketball hoop where he shot baskets - without his walker, just the therapist spotting him. Next Cooper requested to play hockey.  I played goalie on a tiny net, and he still shot the puck past me, using a lacrosse stick as a hockey stick. (In my defense, the only tool I had to defend the net was a small baseball bat.) The physical therapist alluded to the fact that insurance wasn’t going to approve any more therapy, BECAUSE COOPER DIDN’T NEED IT.  He’s moving around very well, he apparently just needed someone to tell him to stand up and walk. This is another example of the mental battle Cooper deals with, as well as the uncharted territory we are navigating as parents. 
In the meantime, Cooper is enjoying his newfound freedom on the walker, and is even moving so fast, he sometimes goes up on two wheels around the corner. 🙄 I look forward to seeing how Cooper surprises us next. 
 

Journal entry by Christine Tippett

We made it out!! We made it to the Blue Rocks game today. As usual now, Cooper was excited to go, and then got cold feet as the time to leave approached. Today he said he was afraid people were going to make fun of him for his neck brace and wheelchair. We assured him that people would think he’s strong and brave and a baseball fan, just like the rest of us. He finally warmed up to the situation once we arrived and settled in. He cheered, enjoyed some Dippin’ Dots and a trip to the team store. He finally melted down at the top of the 8th inning, and we returned to the apartment for a well deserved nap. Three hours was a long time to be out!
Cooper’s doing great. We are getting better at in and out of the wheelchair. We are noticing he’s more comfortable sitting up on his own (not leaning back in the wheelchair), and rolling over. 
That being said, he did not want to, nor enjoy, taking a bath this evening. Believe me, we did everything to help him feel comfortable, but he was scared out of his mind. It was a tough time, but we did it, and now we’ve got one bath under our belt and hopefully the next one will go a little smoother. 
With the bath we took off the neck brace and changed the pads on it. Those get gross, real fast. It took a couple tries to get the brace back on him where it’s  supposed to be, but again - next time will be easier. 
We stayed up late to watch game 6 of the Stanley Cup Finals. We are cheering on the St Louis Blues. But really, we just love watching hockey. We are bummed the Blues didn’t win tonight, but excited for the final game - game 7 Wednesday night. 
Pictures, videos, books and writing stories are keeping him entertained. Every day I see more smiles and hear more laughs. 
Our sweet boy is snoring next to me, sleeping comfortably. He’s definitely sleeping more comfortably than he was at the hospital. We are also getting better at the medicine schedule, so we’ll be waking him up in 30 minutes for his next dose.
Tomorrow we go for physical therapy. I’m sure that won’t be easy, but we’ll see!
Today was a good day, despite the screaming bath time. Thanks for the love. It’s so good to see faces and read words from home. I’m really looking forward to going home this weekend!

Journal entry by Christine Tippett

Today was rough. Rougher than I expected. But hey, I came here expecting a completely different surgery on different body parts, so I have no idea what to expect anymore. 

Cooper slept great. Brian is SuperDad, sleeping next to Cooper and getting his meds to him in the middle of the night. (I think Brian is hoping for a better Fathers Day gift than my anniversary gift to him. Apparently I accidentally bought him a women’s biking jersey, so if he keeps it up, maybe I’ll get him a biking jersey that fits him this time. 😂)

I believe and the doctors say that Cooper is healing well. He’s really sore. He’s not putting any weight on his left leg yet (they took bone for his graft from his left hip). 

But mentally, it’s really rough. If I were a weatherman I’d say “moderate to extreme lows, with moments of cheer in between”. Cooper doesn’t want to leave our apartment. He doesn’t want to leave the bedroom and the comfort of the bed. 

He sleeps a lot. He’s sad. He’s scared. I’m sure the sleeping is his body healing and the pain meds making him drowsy. 

We had family in Wilmington for a cousin’s basketball game today! Initially, Cooper was excited to go to the game, and wanted to know if we should buy tickets online first. ❤️But, as the time approached, he said he felt bad and didn’t want to go.  We talked him into going. 

Cooper is not particularly comfortable in the wheelchair. It’s a bit wide for him, so we need to learn how to prop him up so he doesn’t fall over sideways, all the while being mindful of his painful hip. And, all the soft stuff (pillows or blankets) he sits on slides forward, so we have to keep sitting him up again. It’s a learning process for us. It’s an exercise in patience to figure out how he’s comfortable, and understand what he’s saying - his sweet words impaired a bit due to the brace being up in his face. 

Anyway! Once at the game he was happy, then wanted to leave 10 minutes later, but we talked him into sticking it out and we watched the rest of the game. Cooper even clapped for the free throws, and was telling players to “Shoot!” Cooper enjoyed visiting with cousins after the game, but then decided it was time to go. 

At home we rested, then found that Cooper was afraid to eat. After a chat with Grandma (my mom) about how his great grandma Stella also wore a neck brace and thrived in it, he napped and was ready to eat a bit of dinner.

There are tickets waiting for us at the Wilmington Blue Rocks game tomorrow, so I hope Cooper feels better.  If a Blue Rocks game doesn’t motivate him, I don’t know what will. Heck, we brought his Blue Rocks foam finger all the way from home for this game!

 

Thanks for all your love and support. Keep it coming. It’s much needed and appreciated. 

Journal entry by Christine Tippett

Two big highlights of today:

  1. Visit from the Wilmington Blue Rocks
  2. Discharge from the hospital 

It IS National Donut Day, but apparently the hospital is on a “health kick” and doesn’t sell donuts. So we plan on finding a local donut shop (NOT Dunkin’ Donuts) and celebrating tomorrow instead. 

Cooper was not excited to leave the hospital. I think he was comfortable there. There were super nice nurses to help us, room service at the other end of the phone and a hospital bed that he could request be tilted to “10 degrees please” when it was time to wake up and take medicine. I was pulling my hair out all day, so excited to be leaving. But after a snafu with renting a wheelchair left us discharging after 8pm, I found myself very anxious to leave. I’m nervous about adjusting Cooper’s neck brace the right way. I’m afraid of missing a dose of pain medicine and having an inconsolable 6 year old.  I’m nervous about comfortably transferring Cooper to and from the wheelchair and the bed, toilet, shower, etc. But this is our new reality for a bit, and I think I’ll be ready for it after a good nights sleep. Brian gets medicine and Cooper duty tonight.   

Good news! With all this spare time next week (ya know, when we were supposed to be having Cooper’s second surgery), we are going to get into physical therapy as many days as possible to help Cooper get back on his feet. (My mom’s idea, which I am thankful for, because my only ideas include donuts today.)

Thank you for all the love. We are happy to be operating as a family, all under one roof tonight. 

Journal entry by Christine Tippett

Another day of healing for Cooper. Many more smiles today. Well, except for when we went for another CT scan. He didn’t want to ride in the wheelchair or lie on the CT table, but we got through that. 
It is uncomfortable for Cooper to sit up straight - or close to straight, in his bed or in the wheelchair. Yet, Cooper is dependent on a wheelchair at this point because it hurts him so badly to walk, due to where they took the bone graft - his left hip. 
Cooper started the day HATING rides in the wheelchair, but the physical therapist said he needed to stay in it for an hour and 20 minutes, and by 45 minutes in the chair, he had fallen asleep, so he stayed in the chair for over 2 hours! 
He knows he needs to go in the wheelchair tomorrow morning to go to “the clubhouse” on our floor, where the Wilmington Blue Rocks are visiting!!!  We went to a Blue Rocks (minor league baseball) game last summer when we were here, and fell in love with the home team. Cooper is really excited to meet them again. 
Sounds like Cooper will be discharged tomorrow (Friday). As you may know, we didn’t plan to come home until June 15, so we aren’t sure what the immediate futures holds for us,
other than learning how to make Cooper comfortable and gain his independence back, that is. Yet again, one day at a time. 

Journal entry by Christine Tippett

Yesterday was our first appointment with Cooper's official diagnosis: MPS IV-A, otherwise known as Morquio Syndrome.

We met with Dr. Thomas and our genetic counselor, Janell.  We were walked through the science behind what was happening (I should have paid attention better in high school biology), how it is a lysosomal storage disorder, and Cooper's had is since the point of conception.  We discussed all his systems that can be affected: orthopedic, pulmonary, cardiac, audiology, ophthalmology and dental.  There are no cognitive symptoms as a part of Morquio.  As a matter of fact, some Morquio patients even have above average intellect!  But we knew that when Cooper reprogrammed our phone to Spanish.  We discussed the primary symptoms, what we need to monitor, and the symptomatic treatments.  None of this was new or shocking to us, because we were well informed and given plenty to read when we received the official diagnosis on 30 Jan.  

We also discussed the clinical trial for Enzyme Replacement Therapy (ERT).  The trail has been going on for 5 years, and it sounds like the drug will be available commercially the second quarter of this year.  Test subjects have seen improvements to some of their symptoms while using the drug, and the side effects haven't forced anyone to quit taking it!  We are very excited to be able to participate in the trial, and we plan to sign up in the next week.  During the trial and after ERT becomes FDA approved Cooper will receive this medication via IV once a week for the rest of his life.  Cooper and I will be dedicating one full day to the ERT.  (It's usually 6 hours at the hospital/)  Having a port surgically placed is our next step, so that we can easily and less painfully hook him up every week.  Also, the port will be there for blood draws and lab work needed for the future.

We meet with the general surgeon on Tuesday, 18 Feb.  Since we are looking at installing a port, we may also fix his umbilical hernia at the same time.  Having both surgeries done at once minimizes the number of times Cooper goes under anesthesia.  Because of the symptoms of Morquio A, Cooper is a high risk patient under anesthesia, and Childrens Hospital has a specialized anesthesia team who will be with him for every surgery.

Another upcoming appointment - we meet with the neurosurgeon tomorrow, 13 Feb.  I don't really know what to expect at this appointment, but I believe we'll be talking about neck stability.

Cooper was a ham during the appointment!  Playing peek-a-boo with the doctor, spilling Cheerios all over the exam room and demanding toys and phones to play with.  After he curled up on the floor with his blanket and got cranky, Laura dressed him, swooped him up and rocked him to sleep for the second half of the appointment.  Again, super thankful to have another set of hands, ears and a medically trained brain to help out!

We are so thankful to be in the care of the Children's Hospital team, and in the thoughts and prayers of so many wonderful people.  Thought for the day: "The only way out is through."
Cooper’s Story

Site created on February 12, 2014

Welcome to Cooper's CaringBridge site.  I've created it to keep friends and family updated.  If you want to keep track of Cooper's journey, register on this site, set the notifications to get an email on journal updates, and then it will send you an email every time we update. This site makes it easy to get our information to you, but please don't feel like I don't have the time and energy for you.  Sign the guestbook here, or drop me an email, text or phone call.  It keeps me grounded. :-)

Cooper was diagnosed with Morquio Syndrome, type A (mucopolysaccharidosis (MPS), type IV A) on 30 Jan, 2014.  He was 16 months old at the time of diagnosis, and besides a bump on his back, you wouldn't know anything was wrong with the curious, ornery, quick to laugh, babbling toddler.

As an infant, I noticed a bump on his lower back.  We saw an Orthopedic specialist at Children's Hospital about it in June 2013.  He examined Cooper, took X Rays, and diagnosed it as kyphosis.  We were to do X Rays every 6 months and watch it.  We thought that he may need surgery to fix it, he may grow out of it, or he may just have a bump his whole life.  When we went again for X Rays in December 2013, our Orthopedic specialist was concerned that it had gotten worse, and wanted to order MRIs.  MRIs on a kiddo this young means they have to sedate him.  Not only were we concerned about him being sedated, but also about the unknown.  What could they find?  Cooper had MRIs on 13 Jan, 2014, and came out of sedation like a pro - sticking his tongue out, smiling and happy - yet wobbly.  Two days later we met with the Orthopedic specialist and first heard the term mucopolysaccharidosis.  We were told NOT to Google it.  It's scary, and the Internet had the worse case scenarios, right there at your fingertips for you to freak out about.  We didn't know what type, if that's what he had, or how severe - so take one step at a time and get into the Metabolic Clinic.  We met with the first metabolic doctor on 22 Jan 2014.  He agreed he thought it was one of two types of mucopolysaccharidosis.  But we were again told, don't Google it!  Cooper had more X Rays, a urine test and lab work done.  

We got an official diagnosis 30 Jan 2014 - MPS IV A, Morquio Syndrome.  The diagnosis was a double edged sword.   YAY!  We know what's wrong.  WOW, that's a lot to handle.  This is a great website that breaks it all down for you: http://www.morquiosity.com/  (http://www.morquiosity.com/ ) We have no prognosis for Cooper - we don't know how severe his condition may be.  We are thankful to have an accurate diagnosis at such a young age. 

We're now seeing all the specialists.  We are blessed to be in Colorado, where Children's Hospital is here help us through this.  

We are also lucky to have an Enzyme Replacement Therapy - which will help replace the enzyme that Cooper's body is missing.  It was approved by the FDA in February 2014.  We are writing the new standard of what Morquio looks like with medication.  But the therapy is a treatment, not a CURE.   Enzyme Replacement Therapy is a weekly infusion.  We spend 5.5 - 6 hours at the hospital on infusion days.  After seeing an array of reactions to the medication, Cooper now tolerates the medication well.  Cooper however does NOT tolerate accessing and deaccessing his mediport.  I pray this process gets easier as he grows to understand this is saving his life.

I got laid off after I had Cooper.  I switched to stay at home mom, now work part time from home for a software company, and volunteer as part of the National MPS Society's Board of Directors.  It's the perfect setting for our situation right now.  I know now why I got laid off.  It's God's plan to promote me to full time project engineer for Cooper.  I was a project engineer at my previous job - it was all about coordination, communication, documenting, lessons learned, etc.  

We are defining what normal looks like for the Tippett family, and I wouldn't have it any other way.  I love seeing the world through Cooper and his big sister Campbell's eyes.  It's all new, fun, amazing and sometimes scary.  But we're all in it together, taking one day, one appointment, at a time.  In the mean time, Cooper is busy playing baseball in the backyard with Campbell,  beating on his drums, and anticipating the next ski day or camping trip.  

I'm  fundraising to support research and find a CURE for MPS IVA.  Visit Cooper's Courage page to donate and check on our progress:  https://mpssociety.org/give/courage-pages/stories/cooper-tippett/  (https://mpssociety.org/give/courage-pages/stories/cooper-tippett/ )I'm a mom on a mission.

We are beyond grateful for the love, support and prayers of friends and family, keep 'em coming!!!  

Chris (Cooper's mommy)

SVG_Icons_Back_To_Top
Top