Continuing to live with the uncertainties of spina bifida

It seems like forever since I’ve shared an update about Chance on my blog. I know so many of you care about our boy given all the things he’s been through. Periodically I have tried to share brief updates on facebook, twitter and instagram – but they don’t compare to the update I am long overdue to share. I admit so many of the thoughts I’ve been learning to adjust to and many of them are personal thoughts about Chance’s care. I know many families have varied beliefs on how much they share publicly…I pray in sharing this update that our family and friends feel more updated about our little guy and that somehow we may help another family affected by spina bifida. I know some people may fear how their child may feel about sharing personal updates..and surely we hope to raise our child not to be ashamed of these differences in his care as he grows – they are part of who he is.

So first, here’s a sweet moment with Chance at the end of 2014 just before therapy. For those of you wondering how life has been since he’s gotten his wheelchair – he loves it. And he is pretty independent in it’s use about 99% of the time. We’ve learned to watch for bumps (he’s fallen twice due to silly bumps in the sidewalk) and he’s continuing to learn to transfer in and out of it on his own. We primarily use it in times when we wish for him to be independent and know the distances are too far for him to walk with his walker. He does still fatigue walking with his walker after short distances.

Last August he went through a lot of tests to check on his health. Thankfully since then his health has been fairly good so this month he only had to go through one test, his renal ultrasound to check on his kidneys. I feel so blessed that as he grows he’s beginning to mature into a great little kid. I have memories of him screaming as a baby through this relatively simple test – and now he is so well behaved.

Overall we have a lot of updates that we really haven’t spoken too much about publicly. First of all, his shunt and neurological health are doing great. Last August he went through a sedated MRI to check on his spine and brain and his shunt is working well. He had one scare in October where we could see his shunt tubing through his belly and began to get sick – we spent an evening in the ER and learned his shunt was doing great…but he had a pretty significant case of constipation – something that is common with individuals living with spina bifida.

At the end of last June Chance had a really serious urinary tract infection. It was that bad that he was hospitalized for 4 days. We knew they could happen and he had minor ones in the past but this one was rather scary. It started with stinky pee. And a few days later he woke up just seeming tired and not himself. Normally he is full of energy during and after a swim lesson, but he was super fatigued, began to get sick and ran a high fever fast. By that afternoon we were in the hospital and praying they’d figure out what type of bacteria he was fighting – it took 2 days before they determined that he was fighting an infection that didn’t react to broad spectrum antibiotics. We went home and within a month later he began to get another UTI, thankfully much more minor.

By August he underwent a urodynamics test. It’s one of my least favorite tests to see him go through. Essentially they catheterize him and push fluid into his bladder to see how much it will hold and they attach sensor that can show how his bladder reacts and at what point it feels pressure and causes him to use the bathroom. Yes, it seems very invasive – but thankfully he tolerated it well this time. It’s still tough to gauge just how much he feels and can control so these tests are necessary to help the doctors understand how his bladder functions. The test showed that his bladder can hold 150cc but that it begins to indicate “pressure” at 100cc meaning he is likely not emptying completely (which causes UTI’s) and that he’s likely to “leak” at some point after he reaches 100cc. That test along with the two most recent UTI’s this past summer were the indicators that brought the decision that we were fearing. Our little man now needs to be catheterized. It is something that he will need for life. We can pray for a miracle that his body will adjust and change and he’ll be able to control these things – but the reality is…majority of children with spina bifida require intervention to help manage the care of their bladder and kidneys. If we neglect this care we can not only create damage to both but it could prevent him from achieving continence and independence in caring for these needs. We’ve been told by many that the earlier this care begins the easier it is for him and that he will resist it less. In September we began catheterizing him every 3-4 hours during the day. Right now this is the plan of care that will help us keep his bladder and kidneys as healthy as they can be. Thankfully he has been amazing as we’ve transitioned to learning to provide this care to him. He’s already showing an interest in helping which shows us promise that in time he will be able to do this care on his own.

This past summer Chance also began to show signs of constipation. We began him on miralax again, but even that wasn’t enough. There were times over the past six months that he’s went 3, 4 or even 5 days without a bowel movement. Constipation can be worrisome for a person with spina bifida because it can impact them in so many ways. The symptoms are similar to a shunt malfunction in that it makes him sick. We’ve lost count of the number of times Chance has gotten sick over the past six months. It can impact his shunt and even lead to a malfunction – we were concerned in October because he was that backed up that we could see his shunt tubing protruding from his belly. And if constipation gets bad enough it can cause an obstruction which could lead to surgeries. In the fall we saw the GI doctor for a follow up appointment and we agreed it was time to begin the process to intervene and begin his bowel management care plan as well. Just this past week we began the cone enema – yes, something I never wanted to have to do to my child. All of these things that are such personal parts of his care…are things we prayed we could avoid and not need to do. But now they are necessary to keep him healthy. Our next goal is to work towards keeping him continent and then helping him reach independence. We are still very early in this part of the journey but we are hopeful it will help our boy. The plan is to do this routine every other night, which involves more than a half hour of waiting in the bathroom with him. But the upside of it all is that it’s highly likely he will stay clean in between – which will be so important to us as he grows. We’ve been told by so many other families that of all the challenges…the bladder and bowel care are among the most challenging things to deal with. Thankfully his GI doctors are proactive and they’re prescribing a newer system called the peristeen that is believed to be more likely to help him become independent in this care too. If you are wondering how long he will need this care, it is much like catheterization…in that he is expected to need intervention for life. We pray maybe he will prove otherwise, but there aren’t many living with the type of spina bifida he has who manage without some type of bowel management care plan.

This past Friday we met at the spina bifida clinic for his bi-annual clinic to discuss his care. I had suspected a week or more before that he might be brewing a UTI…if you see this photo you can see he wasn’t feeling 100%. He had a low grade fever this day…which lead us to more tests to check and make sure he had nothing serious going on. Thankfully the test came back inconclusive of any serious infections that needed treatment. It was that reminder that at any given point his health can change – and I was thankful all of his doctors agreed to be proactive and test to make absolutely certain it wasn’t a serious infection.

Chance was adorable at clinic…he rolled in and out of his room and played on the nintendo most of the morning. This photo below was taken just after we met with the orthopedic doctor. He’s met with more than one in the past month. After getting his most recent braces we realized that the measurements seemed a bit different and that one leg might be slightly longer than the other. So Chance was looking at the x-ray of his legs – that have been analyzed a few times as the doctors, orthotist and therapist decide what we do. We’re hopeful that it’s just a minor difference – but it’s possible that he may require a lift under one shoe so that he’s level. Thankfully it’s not a huge length difference and we’re working on trying to adjust things as this little guy of ours grows so fast. The doctor we saw at clinic felt the difference was so little that nothing was needed but began to look closer at his hips and back. Thankfully his hips are still healthy and not dislocated (which happens to some people with spina bifida) – but it was noticed that he does have mild scoliosis. I knew it was possible…but it was the first time I had heard it be a potential thing for us to keep a closer eye on. The doctors will be doing a test to take a closer look at his spine before his next clinic in about six months.

Yes, I admit these recent changes over the past few months have been a lot to accept and transition to. I feel quite blessed that Jason and I are able to juggle differing work schedules to make sure one of us can always provide this care for Chance. Of course we both feel blessed that Chance has two of the best siblings…Jaylen and Hope continue to be so loving and protective of their little brother. They realize how much he is growing and I’m sure are beginning to see how much his care is changing – thankfully they have been the most loving siblings as we go through so many of these changes with Chance together…and that in itself is the best reassurance for us to have, to remind us that we will make it through every challenge together.

Chance continues to do therapy at Arnold Palmer Hospital weekly for an hour each week. As he grows older he has begun to respond better most weeks. Some weeks he can be a little stinker and resist therapy but most weeks he shows his silly side as we try to make therapy fun for him.

This past fall Chance received his new braces that bring him a bit more support. We’re hopeful these modified HKAFO’s won’t be needed forever – but he needs this support, otherwise he buckles easily at the knees and hips. At the end of last year he showed off his standing abilities with his walker…yes, he can lift his walker for a few seconds when he’s wearing these. He has stood for 10 seconds independently and has taken 5 independent steps with these new braces. Unfortunately he has a lot of balance issues and so most times he looses his balance in a very short time, even with the new braces.

As we await his new forearm crutches to arrive, he’s spent time at therapy using various devices including various types of walking sticks and canes to learn to walk. He has taken several steps more confidently without losing his balance as easily with a cane like he’s using in this picture.

He’s also showing more confidence to take steps as we hold just one of his hands. This is one of my favorite pictures taken of him in 2014 (yes, one of hundreds, lol). It was taken on Thanksgiving as his big brother Jaylen was helping him walk from the couch to the other room. We are so blessed that our kids have such big hearts to help their little brother when he needs them.

Chance has been swimming with Harvey Barnett, the founder of ISR, since May of last year and it’s been such an amazing experience for him. It may be helping him learn to swim and learn survival skills but I’ll be honest, it’s like therapy for him and it truly has helped him become so much stronger this past year. In the pool he will stand on Harvey’s hand now for nearly 90 seconds. I documented all of his swimming this year in a book that you can preview the entire book online – it really has been an incredibly beautiful experience to look on for our boy. Chance was also featured in a short news segment in September – if you haven’t seen it you can view it on WFTV’s web site. We’re incredibly proud that our boy has helped inspire so many other children with special needs to have an interest in swimming.

We’re at this point that we see Chance is so close to taking off independently with walking…but his little legs just don’t work the same. He works so hard at therapy and we continue to pray he will be able to gain the strength to stand and walk independently.

We learned of a private therapy group, Believe Therapy, that other families affected by spina bifida have used. We learned they had some openings before the holidays and elected to invest some of our HSA medical funds into helping our boy. The challenge for us in using this therapy is that it is not covered by insurance so we have had to pay out of pocket the full amount. But we agreed it was worth seeing how he would do and try them out. I’ll share just a few photos, but I have to say that the experience has been pretty amazing. They have different ways to engage the kids and can isolate muscle groups. Chance had so much fun nearly his entire time working with them in the 10 hours we invested.

Some of you may have seen on facebook or twitter, but we were that impressed with this new therapy that we’ve opted to try fundraising to help raise the money needed to pay for intensive therapy. Intensive therapy is 5 days a week, 4 hours a day, for three weeks. In addition to therapy he’d need additional separate sessions in between intensive sessions to help sustain his strength – so we are hopeful our family and friends who wish to help are able to do what they can to help Chance’s therapy needs. Since he was born we’ve maxed out insurance/medical expenses and are currently paying more for medical and insurance than we spend on our home mortgage and vehicle costs. If you’d like to contribute to his fundraiser to assist with his therapy needs it’ll be open for 18 more day – here’s the link.

Thank you all who continue to pray for our boy and to all of you who have supported us over the years. We knew this journey raising a child with spina bifida wouldn’t be easy and that his needs would continually change. We know the complexities of spina bifida aren’t always easy to understand…we’re doing out best to understand them ourselves. We hope this update has helped you all understand how life for our little guy is changing…and that it reassures you that he will continue to amaze us all.

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