Another Super Chance update

“One day, in retrospect, the years of struggle will strike you as the most beautiful.” ~Sigmund Freud

I’m finally finding a moment in our crazy week to update you all on our little man. After our update last week we’re reminded of just how loved our baby boy is and we know you all are a little concerned so as promised, we’ll do our best to share updates as we are able to. It’s been a crazy week of coordinating more tests for Chance, going to his spina bifida clinic, and really just waiting for the days ahead to pass us by as we anticipate the possibility of surgery in the near future.

Last week after learning the news about Chance’s concerns with his chiari malformation and the possibility of chiari decompression surgery we instantly received messages within a day from many families who have children with spina bifida. Many who have come to love our baby boy and sending their prayers to our family and our baby boy…and others who have been through or are going through very similar experiences and concerns with their own children. Though we absolutely adore all of Chance’s doctors, sometimes it’s almost easier to be able to turn to families who have been through it to hear advice from a parent’s perspective. Last weekend we met with Dominick, a 15 year old who has been through the chiari decompression surgery twice. God bless his family…they’ve had their own fair share of challenges – but it was so reassuring to hear the encouragement and reassurance that if the surgery is needed that it really can help alleviate some of the challenges our baby boy is facing. During our visit I couldn’t help but capture a few moments with Chance & Dominick…he sure is popular with all the little ones who have spina bifida…they all seem to look up to him. Dominick…thanks to you and your Momma for helping reassure Chance and I that he’ll be okay.

Last weekend we discussed the rare possibility of a shunt malfunction possibly showing through an eye exam after learning of another family who had this challenge arise. Apparently things can be seen in an eye exam as early signs of a shunt malfunction before an MRI would ever pick the concerns up. His neurosurgeon agreed it wouldn’t hurt to take the precaution and rule out this possibility. We got up Tuesday morning at sunrise for Chance to undergo an eye exam.

The opthalmologist had the most amazing facilities and Chance was in love with being such a big boy watching cartoons until his exam. Perhaps this photo is a sign that his vision is okay. ;o) Thankfully the exam reassured us that there’s no pressure built up near his optic nerve. The doctor did notice his optic nerve was “pale”, when typically they are more colorful. He said this is a sign that it’s probably been damaged from intracranial pressure, which given the fact he spent most of the first year of his life with shunt issues this would make sense. He’s too young to undergo a proper vision test, so it’s too early to see just how much damage has been done. We agreed with the doctor that it’s something we should monitor closely so we’ll return in six months to keep any eye on things. Thankfully this appointment brought the reassurance that his shunt is still functioning well.

Chance underwent his sleep study Wednesday night at Arnold Palmer Hospitals pediatric sleep center. He proudly sported his super Chance p.j.’s with the hopes they’d help him use his super powers to rest well through his sleep study. The study was intended to rule out or confirm any sleep disorders like sleep apnea.

As we waited to begin the study Chance got a call from his daddy…he was so darn thrilled to get to talk to him for just a brief moment.

We spent well over an hour together as the technician set up all the wires, all 27 of them, that would be used to monitor him through his sleep. It was no easy task to hold him still…most of the experience he sat still and was so amazingly good. We spent part of this time watching WWE wrestling videos on youtube, playing games on the iPhone…but what excited him most was when his Daddy would text him a picture of himself. Every time he’d begin to cry, Jason would send another picture, and he’d cheer up. We spent that hour texting pictures back and forth with Jason so that Chance could see his daddy…as he sent us pictures we  sent him pictures to help share the experience of getting wired up for the sleep study.

The last wire they put in was the one that would monitor his breathing near his nose – he absolutely hated this wire…and cried for quite some time “no”…for “nose” – he wasn’t happy at all from this point forward.

Poor little guy wasn’t thrilled with this experience, but considering…he did amazing.

I spent a good 20-30 minutes with him crying himself to sleep…and finally, Super Chance fell asleep.

As I have through so much of his life, I used my camera to help distract me through the trying moments. As much as I wish to forget so many of these heartbreaking moments, it’s tough not to capture the moments…realizing these moments are a part of his journey. He woke about a half dozen times through the night – really uncomfortable with all the wires attached to him.

Thankfully the results of the sleep study showed no signs of sleep apnea or other sleep disorders. However, we did learn he showed signs of having a possible seizure in his sleep. I’ve learned of quite a few kids who have spina bifida who have experienced seizures…it’s one more things we prayed to never have to worry about…but now we’ve added it to the list of possible concerns. Right now we’ve been told not to worry…and that we’ll likely see a neurologist to discuss the concerns. Today at clinic I was reminded that with spina bifida, sometimes comes a box of surprises…and just when we think we have control over it all…we find out more unexpected surprises. The most we can do at this point is live day by day through the moments…and pray. We’ve been doing a lot of that lately.

This morning we met with most of the team of doctors caring for Chance at the spina bifida clinic. He goes to clinic every six months for us to get the opportunity to discuss the results of tests and his care all in one day and location. It’s incredibly convenient for us and is a blessing to know we have so many doctors not just working so hard to care for our children, but it’s evident they are working closely together to make sure he’s getting the best possible care. It’s crazy just how connected all his challenges are to each medical speciality so we’re uplifted to see not just the care and concern but the close connections his doctors have with one another to make sure he’s getting the absolute best care.

Chance’s morning at clinic began by meeting Samson, Arnold Palmer’s pet therapy pup…boy was he cute. And Chance absolutely loved him. We’re so appreciative that they took time out of their day to visit the kids at clinic…Samson sure did bring the kids lots of smiles.

Chance is beginning to help a bit more during his clinic…here he was trying to help his nurse take his blood pressure.

What a big boy he was at clinic…he sat up and was so well behaved the entire morning as we waited to see five different doctors offering different care.

Chance brought his little wrestling figures along with him this morning…boy were they fun for him to play with, especially with Dr. Lesher…he sure did give her the cutest expressions as he motioned to tell her they were wrestlers. He isn’t talking a lot these days, but he is communicating in his own ways…sometimes in his own gestures – other times actually using sign language. Every doctor he told “thank you” by signing and he’s learning to sign things like: more, all done, yes, and a few others. He’s learning them so quickly that it’s tough to keep up with them all.

Part of our discussions this morning involved his orthopedic function and how therapy has been going. He just got new braces yesterday and for now we’ll keep working with him with them. If he continues to show weakness the doctors agreed the next discussion should be if we brace him higher and offer additional support.

Today’s clinic went okay…sort of the type of news we expected to hear. It wasn’t all perfect news, the sort of stuff we anticipated would be discussed. Thankfully Super Chance helped keep us smiling all morning.

We discussed his bladder, bowel and kidney health. We feel really blessed that he has one of the healthiest set of kidney’s in a child with spina bifida. Typically kidney health is a big concern so they’ll always be monitored closely, but his doctors couldn’t be happier with how they were doing. His bladder will always be neurogenic and it’s tough to know for sure how much control he’ll have as he grows older – for now we’ve been reassured that we can just care for him as any normal child this age in diapers and watch for signs of uti’s. If he has any serious symptoms like he experienced in June they will likely suggest intervening and managing his care in these areas. It’s not worth worrying ourselves to death about all the possible things that could go wrong…there is a possibility he may need to be cathed, medicated or require surgery in the years ahead to help him be social continent…but we won’t stress about it for now. We’ll continue to watch him closely and feel blessed his doctors will be there to help us see him through any challenges that arise. All his doctors agreed that the gagging and vomiting is less likely to be from UTI issues and they also feel the chiari and syrinx issues are influencing his recent change with his urological health. He’s made it 2 years without any UTI’s, so for him to have 3 in six months raises concerns that maybe the neurological issues are influencing these areas.

We’re working on scheduling his swallow study, and anticipate it should happen early next week. From there we’ll meet with his neurosurgeon to discuss everything in more detail. We’ve had a lot of you praying and wishing, just like us, that Chance wouldn’t require another surgery or that the tests would provide answers that might deter the need for the surgery. As hard as it’s been, I’ve come to accept and understand the need for surgery – after speaking to the doctors and to other families who have been through similar…though surgery is a concern, the bigger concern is that we don’t prolong it if it’s needed – otherwise he could begin to lose function…and once function is lost there’s no guarantee that function would return after surgery. So for now, we’ll keep praying and in the week ahead we’ll hopefully have a better idea of what we have ahead of us. We’ll do our best to keep you all updated in the days ahead.

I wanted to take a moment to thank you all again for all the continued prayers and encouragement. For now the most we can do is pray. As wait to learn what we have ahead, we’d love to have you all pause to show a little support for our little man. We have hopes that if he does undergo surgery that he’ll be completely healed by the end of October to walk on his own for the first time at Central Florida’s 3rd Annual Walk-N-Roll for spina bifida. Though we’d absolutely love to have you all there in person…any contributions made will help support our local spina bifida community. Our baby boy has helped bring a community together…and though we are still feeling heartbroken with his medical challenges, the reality is…we aren’t alone. There are many families in central Florida affected by spina bifida and by joining “Team Chance” you can help support our spina bifida family. Even the smallest donation can go a long way to help us do more amazing things for these families. Hope you all enjoy the cards we’ll be sending out soon to help spread the word.