Super Chance’s long overdue update

“The will of God will never take you to where the grace of God will not protect you.”

It’s been long overdue that I share an update on my blog. How have I made it through the year without sharing many updates about our little guy? Perhaps because I’ve been busy with life…the year has been a rollercoaster of amazing and trying moments…and I suppose the lack of updates is typically a good sign that things are going good. After having so much happen in 2011, our family has been so incredibly thankful that Chance’s medical moments haven’t been anywhere near as challenging…but lately we’ve been reminded that his spina bifida…it’s not cured. There’s no miracle that will make it go away. Spina bifida holds so many uncertainties and just when you think life’s going great and the challenges are subsiding there’s always a possibility things may get more complicated and he’ll require more care. My momma instincts have been suspecting some things have been going on with our little guy since the spring and they’ve progressed this summer to raise concerns. Rather than beginning with the worrisome news, I wanted to reflect on all the updates I haven’t shared on my blog this year…to hopefully remind you all, but really to remind myself more…that we’ve been blessed with an amazing baby boy who is loved by so many. I know some of you may follow some of the updates in facebook or instagram…hopefully sharing them now with my open and honest commentary will help you all understand a little better the complications our little man is up against.

This photo was taken earlier in the spring, I recall neither of us were feeling too well that day.

But really most days this year have been more amazing with sweet memories with our little guy. This shot was taken in February just before his birthday…it was shortly after he received his walker and we took it out to capture a few moments…he was all smiles as usual.

Our little guy has been gradually learning to use his walker more. He’s getting stronger by the day, but those little legs and hips are still rather weak. Back in February this photo was taken not long after we received his walker.

It really didn’t take long before he got the hang of his new set of wheels that have helped him become a bit more mobile. It’s clearly helped him have a bit more fun too. He’s just anxious to go-go-go most days.

Yes, see that yield sign in the photo…he definitely didn’t pay attention to it the day this shot was taken. We spent some of the kids little league games chasing him around the sidewalk near the fields. He thought it was rather funny that I’d chase after him to take his picture.

He still only goes short distances with it because it is really hard work for him, but to see his confidence and strength is beyond inspiring. Yes, I’m pretty sure he’s proclaiming a victory over spina bifida here…it may continue to pose challenges in his life, but he’s conquered one of the biggest ones…taking steps. Even if it’s with a bit of assistance, it’s amazing to see those little legs of his function.

Yes, the day we took this photo in the spring we shouted “take that spina bifida!” – he proudly let us all know this year that he CAN take steps on his own.

When we’re out and about in areas where he doesn’t have to go far he proudly takes off with his wheels, always smiling as he shows off his super powers.

Shortly after we received his walker this year we headed to visit the amazing nurses at the spina bifida clinic at Arnold Palmer Hospital. They are dear angels to so many of our families…and truly love our baby boy. We can’t go visit them without having huge smiles on our faces. They have so much of my photography from the spina bifida awareness campaign covering their walls…and yes, Chance is beginning to realize just how incredibly special he is. He walked right up to our photo and shouted “momma” and made a little sound pointing to himself…yes baby boy – you are amazing, never forget that. I never realized just how many lives you’d touch 3 years ago.

He’s in physical therapy once a week and gaining strength. Enough so that he’s beginning to stand for a split second.

Many days physical therapy ends up torture for us, because he melts down and resists therapy. He’s been known to cry through a lot of his sessions and even just throw himself down and refuse to use his walker. A growing concern is his mobility. Though he’s gained strength – he still buckles down a lot showing a lot of instability in his hips and knees. For him to walk on his own with out assistance he needs that strength…this little device helped us see how those legged function without him throwing himself down. He had more fun playing with the wheels.

Thankfully the past month his physical therapy hasn’t been total torture…he is really beginning to have more fun and work harder.

He’s finally strong enough to take his own steps with his walker right out of physical therapy now.

This spring he had new AFO braces made for his little legs. He doesn’t have enough strength in the lower portion of his leg to give him the stability to walk so he really needs them to help him stay strong enough. A lot of people ask me if he’ll have to have them for life. To be honest, I do not know…but I’ve been told that it’s highly likely that he will. Most individuals with spina bifida require some type of bracing to support them. It’s just one more thing we’ve come to accept…they take a little longer to put on and get him ready and going shoe shopping is no longer fun…it’s pretty tough to find shoes that fit well around those things. Thankfully Vans have worked perfectly.

Chance was just resized for another set of new braces. Yes…in just a few months he’s already outgrown those last AFO’s. I believe these new ones may give him a bit more function around the ankle to help him be able to get up easier from sitting to standing on his own. Once they come in we’ll see how he does with them. There’s concern about his continued instability around his hips and knees and if it continues after he has his new braces we may be having him try out some additional support, either straps or twister cables that help support him just a bit more. It’s too much for me to think about …so I’ve decided to just wait until that day comes and we’ll make sure he receives the support he needs. Of course as our hearts are a little heavier lately, he’s still smiling through it all.

Reflecting on this year’s moments with Chance, and the moments with him and his walker…I couldn’t help but share this little iPhone moment…because, well, surely chicks dig him. I hate that he may be posed with mobility challenges, but there’s no denying that this kiddo has one of the most amazing personalities ever.

In addition to his physical therapy he began aquatic therapy this summer. He absolutely loves the pool. His therapist is sweet and has helped him build his core strength.

Though I worry about the challenges, we can’t share all these moments without making sure you all know that this little man has had some pretty amazing moments this year…seriously, smiling every single day and making us all laugh. If I remember correctly this was on the way to physical therapy, he was laughing hysterically.

We do our best to surround him with moments where he’ll have fun memories with our family.

Almost always smiling, reminding us that though he has spina bifida…many days that’s the furthest thing from our minds.

This spring I recall having a moment thinking of his mobility…we took a walk through the woods. Our family loves to be outdoors. It was such a fun memorable day. Thankfully our baby boy is still small…but it made me fear the years ahead as he grows older if he’s reliant of a walker or more. I kept wondering that day how we’d make sure he got to have those same experiences, even if he couldn’t walk on his own. That day I dreamed of our little guy running around with his brother and sister in the woods…living out their childhood. Instead we carried him…and he observed the moments. We’ll hang onto hope and continue to pray.

Chance is now 2 1/2 years old and there are still moments where I carry him in his baby bjorn. I’ve gotten quite a few comments when I do…like “how old is he?” followed by “can’t he walk?” yes, I try to avoid the response…because it brings up the topic of spina bifida and all too often they respond with “i’m sorry” or “oh my God…” and then saying they are sorry or asking if he’s okay. No, please don’t be sorry…sure we hate the challenges – but he’s okay – no, he’s more than okay, he’s amazing – his mobility just may not be the same as the majority of the population. Thankfully I can still carry him in the bjorn…to be honest, I think we both feel a bit safer when he’s hanging out in it.

In May I began working on the spina bifida awareness campaign for 2013. I’m so incredibly touched to see the response in the last two years…and feel so blessed to have met so many families going through a similar journey. In May I met with Gabriel and Grayson’s family at the beach…to take a shot I’ve envisioned in my head since they were all babies. They are the first two babies I met after Chance was born and families who I’ve grown to know closely. Every time, like today, that I find myself cursing spina bifida…I look at this picture and am reminded how incredibly blessed I feel. With spina bifida comes the blessing of a family I never knew we had…yes, our families are united by spina bifida.

Super Chance loves the beach…unfortunately this day he was the only one not able to walk on the beach. He was one of five kids I photographed with spina bifida that day and my heart grows heavier as I see so many around him taking steps. We’ll keep dreaming that dream baby boy….of you walking on the beach.

A few too many photos this year clearly say so much about this kid’s journey…a  couple of him looking up, like this one…pretty sure he knows God’s got great plans for him and will help see us through all the challenges.

I am blessed, to have Hope & Jaylen so darn loving and protective of their little brother…seeing their love for him gives me confidence we will get through all of this…together.

At the end of May I suspected Chance was not doing too well…and admit my nerves have been on edge since then. I still remember taking this photo and praying…

He was showing all the classic symptoms of a shunt malfunction….lethargic, fussy, vomiting. There’s no mistaking when our baby boy isn’t doing well.

After sharing my concerns with his neurosurgeon we headed to Arnold Palmer one late evening at the beginning of June and he underwent a CT Scan to make sure his shunt was working. It was deja vue of 2011 and all those surgeries and all I could do was pray…even when he wasn’t feeling the best our little man found a way to smile. Thankfully the tests returned with positive results and showing us that his shunt was functioning well still. So we went home and prayed it was just a false alarm. The very next day he began to get sick again, ended up with a fever, and was really lethargic. I began to wonder if it could have been any other illness…or something else. Because he had 2 UTI’s in the six months prior I asked if maybe it could have been a UTI causing the symptoms – and we went the very next day to his pediatrician and had him tested. As if spina bifida wasn’t frustrating enough, now we have to live with the frustrations that some of these symptoms we’ve previously worried about his shunt for…may actually be related to bladder/kidney challenges.

Chance recovered from his UTI in June and we went on with life…of course continuing to take pictures. We figured he’s never to young to start teaching him how to take pictures too. His big sister was the best teacher.

It’s always fun trying to get the amazing shots with this little guy. It’s not always easy…he’s quite silly these days, and very expressive.

Sometimes I rather observe his innocence. We find ourselves frustrated with the challenges he’s faced with…but look at him, he knows nothing other than how to live his life with spina bifida. And what an amazing life he’s living.

I appreciate God blessing us with a baby boy who could help remind us to smile, even through the tough times…surely one of his best super powers.

Our concerns since June have grown. He’s begun to gag more often and even vomit – it’s all been so random. Over the summer I was in touch with the nurses at the spina bifida clinic and his neurosurgeon to make sure they were aware before his next clinic next week. It’s begun to happen so often that I began keeping a journal to help me keep up with the dates…most weeks he’s gagging 4-6 times on average and vomiting 1-2 times a week. At times it’s made us nervous as it’s almost like he’s choking. It’s been so random…sometimes in the morning, but mostly at night. Sometimes after he eats or drinks, sometimes out of no where.

Thankfully those moments don’t last all day…they are very brief and with in 5-10 minutes usually he’s back to himself and playing and being his silly self. His big brother Jaylen holds him close most days…he’s become rather protective of him lately.

Another concern is his mobility. We already have a concern with instability, but what’s been more concerning is seeing his function the last 2-3 months. When he walks with his braces those feet he often drags around as much as he can until he gathers himself to take a few steps. When he’s at home we sometimes leave the braces off of him, it doesn’t keep him off his feet. We’ve known already that his feet and lower portion of his legs were weak, but as we’ve watched him the last few months there’s this fear he may be losing function. Part of me prays maybe it’s all in my head and just a part of those fears that comes with raising a child with spina bifida – but he’s begun to walk more on the insides of his feet and on the top portion of his foot. This picture doesn’t show it quite as well as the moments that have nearly stopped my heart…when he weight bears on the very top portion of his foot. This is something he didn’t use to do in those first few months using his walker and pulling to stand. Now he is beginning to do it a lot more and it makes us nervous.

As I’ve been more worried about our little guy lately, we’ve held him more closely…and helped remind him he’s loved. I have to admit I’ve felt drained not wanting to share too many of my worries this year…fearing that some might think I was some mother overreacting…but I’m always reminded by his doctors and the nurses at the clinic to trust my Momma instincts – it’s better to share the concerns and have things ruled out than to risk him not getting the care and medical attention he may need. I hate it when my Momma instincts kick in…they’re rarely wrong.

I’ve prolonged this update…finally I come to share moments from today. Today he underwent a series of tests at Arnold Palmer hospital. Every six months he undergoes tests to help the doctors monitor everything and make sure we’re getting him the care he needs. Today he underwent some labwork, an x-ray to check and make sure his hips are dislocated, a renal ultrasound to check on the health of his bladder and kidneys, and an MRI that required sedation in order for them to take images of his head and spine. He had to fast for 8 hours prior and couldn’t eat anything until all the tests were over…bless his heart – he was amazing through it all.

Arnold Palmer has the best radiology team. They helped get us through those tests as quickly as possible and there super Chance was smiling through most of the tests.

Though we hate when he has to undergo an MRI, we really adore their team. One of the radiologists is one of Chance’s best buddies…as he played we all spent a bit of time catching up and admiring how much he’s grown and laughing as how incredibly cute he was. Most of the folks in radiology know us…one of the ladies has been taking pictures with the MRI of our little guy since he was in my belly. We reflected on the moments today as a nurse who had never met him admired his name “Chance”. Every once and a while I get people ask me why he was named Chance…yes, the moment I was told he would be born with spina bifida I was frightened of how much he might have to go through…I didn’t want him to endure so many challenges – it was scary, so much so that I came so close to giving up…but thankfully I found the strength to hang on and give our baby boy a chance at life. His middle name Matthew means “gift from God”…and there’s no doubting that he’s exactly that. I can’t thank Him enough for blessing us with this little guy, challenges and all…he’s worth it all.

I was so thankful that he was mostly smiles this morning…not sure if he realizes that he helped me smile a little more through all the worries we’ve had for him lately. This quick moment was taken just before they took him back for his MRI…while I waited for more than an hour. While I waited someone posted this quote that I totally needed today shared by their pastor, “Worry and prayer cannot coexist.” (Thank you Daria…I totally needed that reminder.) Yes, time to do less worrying, and more praying. I remember taking this shot and then waiting…and a little excited that we’d go straight to see his neurosurgeon to have his shunt reprogrammed and praying she’d gives us all the good news and reassurance. How quickly a day can be turned upside down…thankfully our little boy continues to remind us to smile through it all.

Super Chance had fun playing while we waited to visit with his neurosurgeon. He saw his photos on the wall and said “baby”. Ironically today is the first time he’s ever said his name too.

I’m fairly certain they were in shock that I didn’t come toting my hefty nikon at the appt, but I couldn’t help but still capture a moment on my iPhone with his doctor…everyone there made sure to give him lots of loving. Though we haven’t missed all the medical appointments and tests, we have missed seeing all the awesome medical professionals…they were a tad bit excited to spend a bit of time with our little man.

So here’s the official update…first, good news is his shunt is working well…praise God. The rest of the update still has some uncertainty so I hope I can help you all make sense of the things that I myself am still trying to understand…here’s a picture of my baby boy’s head…take a look and keep reading, I’ll do my best to translate the medical thoughts that were shared with me today.

All individuals born with spina bifida are born with what’s called a “chiari malformation”…I believe it’s sophisticated name comes from the person who did all the research behind it. Essentially because our baby boy’s back was born with the defect where his back and spine were open while I was pregnant and after he was born – his brain developed a little differently. Essentially the opening in his back created pressure causing his brain to be pulled downward into the spinal column…I wish I could sound as sophisticated as his neurosurgeon today…but those words I don’t even think I could say, let alone spell. If you notice in the picture his brain is being pulled down in the grey area – she was concerned with not only how far down it is  but that there’s not much room for cerebral spinal fluid (CSF) to flow up and down the spine. Surely he has a shunt to help with that…but from what I learned today some of it still resides in the spine and must flow. All parents of spina bifida know of this malformation, it’s one of the thing that scares us most when we’re pregnant with our baby…in most cases it presents no symptoms and they function well not even knowing it’s a factor in their life. But doctors grow concerned when they begin to present symptoms…one symptom that Chance has had is gagging and vomiting this summer. And it’s not just every once in a while – it’s many times during the week with no signs of going away. Just last night he vomited, and again tonight he gagged and nearly vomited. Other symptoms could arise like breathing problems and decreased function in the upper part of his body. Thankfully those aren’t evident thus far.

In that image you’ll also see a “syrinx”…I’ve learned it’s where CSF fluid accumulates within the spinal cord. He has two. They are very evident in the images and a pretty good size – there’s a suspicion that the chiari malformation may be causing the syrinx, though it’s also possible that it’s being caused by a tethered cord. A syrinx could pose additional symptoms/problems – but from what I understand treating a chiari malformation can help alleviate the syrinx.

As if his head wasn’t enough to worry about, she also shared an image of his back. You can see his defect, where his back was open. Just because it’s now closed…it doesn’t get rid  of the damage that was done…when his spine wasn’t fully formed in those first few weeks that I was pregnant with him. He has a tethered cord, but we’re trying to breathe a little here…like the chiari malformation, tethered cord also occurs in all who have spina bifida. Essentially some of the scar tissue attaches to the spinal cord and could begin to impact mobility. Typically intervention only happens when there’s a noticed loss of function where all other issues have been ruled out. Right now we’ve been told to try not to worry about the tethered cord…because the bigger concern is the chiari malformation.

I pray I haven’t lost you all in all the medical jargon…what’s next…we do more tests. Our baby boy will soon undergo a sleep study to see if he has any breathing issues like sleep apnea. He’ll also see the GI docs to do a swallow study. We hope this helps bring more answers. I have no clue what exactly is involved with either test…but we’ll find out more soon and get these tests done so we can hopefully get more answers.

Today I left his neurosurgeon’s office…somehow maintaining my composure, until the moment I drove away. And the tears fell. and fell. And my heartaches…sure…we pray for “miracles”. For healing. For this wish that there’ll be some miraculous moment that will make this all go away or get better…or as some suggest…maybe a cure. But no, we know the reality of the situation. I credit my son’s life to his neurosurgeon…she’s the one who helped us see the optimism to not give up – she knew all the fears I had when I was still pregnant with him…and surely these challenges were among the things I prayed would never arise…I’ve been told they don’t happen that often…they rarely happen. They are right here in front of us…and I couldn’t feel more blessed that she’s right there helping us through it all. I know if it wasn’t even a concern she’d tell me not to worry myself with understanding all these things…but she sat with me telling me in depth explanations of what’s going on inside of our baby boy’s head and spine…and showed me images to help me understand it all better – and now my heart is heavy. We’ve agreed before any decisions are made that our little man will undergo the additional tests which we pray bring some additional information…but based on the MRI we suspect our little guy may require a chiari decompression surgery. I don’t even want to explain it…it sounds scary. So for now, I’ll do my best to stop worrying and to just keep praying.

Next Friday Super Chance has his spina bifida clinic where he’ll see the team of doctors that monitor him for all the challenges he has with spina bifida. I’m trying not to worry about anything else…yes, his mobility, his bladder/kidneys…I wish there were no worries at all – but there are a few concerns this time around.

So for now I’ll just try to keep praying…and trusting. God doesn’t make mistakes. There’s a purpose in all things that happen in life. Sorry for taking this long to update you all…I felt it was long overdue, just wish I had better news. If you’re heart is as heavy as mine after reading my update…please just let this little guy remind you to keep smiling like he’s been reminding me for so long. Thank you all again for all your sweet encouraging thoughts today.

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August 3, 2013 - 12:53 am

Lora - Wow, I can not believe he is 2 1/2 already. He certainly is a gift from God… only God could bless him with a smile that contagious :)

I will continue to pray for your family as you continue with the additional testing. I pray that you can pull from the strength of all those around you. All those that are and will continue to pray for your entire family everyday. ALL of you are amazing.

August 3, 2013 - 1:10 am

Kinga - Amanda….your family is truly inspirational. My heart goes out to you as a mother cause worrying about people you love the most is the worst type of worry. Your pictures are precious moments of your life and I wanted to thank you for being so open and honest. I have do much respect for you guys and I pray for Chance and his health!

August 3, 2013 - 8:24 am

Lisa - First of all thank you for the updates. I watch every video and read every post and always looking forward to the next. Chance is so amazing and a inspiration to us all. You can not having an amazing child without amazing parents. Chance is blessed to have you as parents. I cannot believe he is 2 1/2 already. Keep the updates coming.

August 3, 2013 - 9:28 am

Rachel - Thanks for sharing your update. I’ve definately been thinking about your whole family. Im so sorry to hear he may have to go through more surgery. I’ll keep you guys in my prayers. Chance is a awesome strong kid. I have a feeling he’ll be ok after all of his challenges and he’ll be a stronger person for it!

August 4, 2013 - 3:20 pm

Connie - Thank you for sharing all that, Amanda, including the hopes and dreams and fears in your heart. I have no doubt that the love you and Jason and Hope and Jaylen have for him is what keeps that smile on his beautiful little face. I love you all and if there is anything I can do, please let me know. I will most definitely be praying and will ask everyone one I know to pray also. Chance is our blessing and our miracle and God no doubt holds him in His hands.

August 4, 2013 - 7:45 pm



August 5, 2013 - 11:59 pm

Cheryl - Thanks for the update and all the pics with smiles. They warm every mother’s heart! Swallow studies are the easiest tests that ever existed! They give cookies (really!) and various liquids and essentially watch – via x-ray of sorts – how things are chewed and how the muscles work as he swallows. They make sure everything is going down the proper tube and the muscles are contracting appropriately. In is non-invasive. There are no proves or chemicals. It will be one of the easiest tests he’s ever had. :)

August 6, 2013 - 10:52 pm

stephanie dunn - Oh my goodness! I think I just re lived the last 3 months!!! WOW.

September 28, 2013 - 12:26 pm

Gian Carlo - These images are just amazing, emotionally connected and telling. Chance is such an inspiring little boy. He is so lucky to have parents and siblings like all of you guys are. Keep doing your thing Amanda, you are telling a story that will inspire and help many out there with no voice. God bless you, your talent, your family and your baby boy.

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