My dearest Chance,
You are still so young and I’m not sure you’ll fully understand the news we will have to prepare you for – but it only seems appropriate to express my heart as we must now also share this news with our family and friends and the many people who have come to adore you. There’s no easy way to share this news – in a few weeks you will need to undergo your 14th surgery to detether your spine. You and so many of our loved ones probably don’t understand what that means – so I pray sharing this update will help our loved ones understand what life has been like this past year – and what has lead to the need for this surgery.
At the start of the year I recall dreaming you’d gain strength to walk independently – but truthfully was just as excited to see you begin to learn to use your crutches independently. By February you mastered them within a week of receiving your own pair – and we were feeling more confident than every before that you might someday also take independent steps someday.
Over the spring you began to get stronger and showed a lot more confidence in using your crutches. You’ve been such a proud little guy who was proud to have improved your ways to move around. You proclaimed often that you wanted to walk all by yourself – and you wanted to use your crutches just about everywhere we went. But in the spring was also when some of these symptoms first began. We noticed you complain multiple times of back pain and neck pain. We even did an MRI this spring to check on your back – and things really didn’t look much different from the past two year’s worth of MRI’s. We all agreed that physically you were looking stronger and we agreed to watch you closely.
You’ve also had many headaches. A month or two before your shunt malfunctioned we did a 24 hour EEG and it showed your EEG activity has progressed and has begun to show new activity on the opposite side of your head.
We continued to do therapy and did all we could to help you get stronger – you worked so hard and looked so strong. You’re one determined kid Chance – through all of these challenges you try so hard to do things that are tough for you.
At the end of May you went through your 13th surgery for a shunt malfunction – you show symptoms so clearly when your shunt is failing – but you rebounded quickly. Though you continued to have headaches most days – they would pass and you would continue to show your spirit to us all. This photo was taken on Father’s day this past year – and have to admit it reminded me that you have some very special loved ones in heaven looking down on us – and my heart was reassured this very day that they will help protect you through every challenge you may face in life.
The toughest part of surgery is that you always have to wait six weeks to be allowed to swim again. We counted down the days after your 13th surgery and exactly six weeks post-surgery we went swimming. Most who don’t spend their entire day with you don’t see the symptoms and challenges you’ve been facing – and often times they passed within minutes. It has made it hard to help everyone understand our concerns. I still remember your excitement to swim that day and an hour later you grabbed your head in pain – and cried “my head hurts”. The most we can do is reassure you that you will be okay – we watch you closely and almost always it passes within minutes. For the past few months these headaches have happened most days at least 1-3 times – sometimes as much as a dozen times in a day.
Though you were having headaches just about every day and beginning to make us worry that your shunt was failing again – you continued to work so hard every time you had therapy. I still remember these two days of therapy so well – both days you showed us signs that something just wasn’t right…you weren’t feeling well but continued to work hard.
At the end of July you had your bi-annual spina bifida clinic – it’s when we get to meet with all your specialists and discuss our concerns. I still remember telling doctors that I feared something neurological was going on or that your shunt might be failing. Over the summer you began to feel more nauseous as well – I recall asking your doctor for anti-nausea medicine because you would feel sick, gag or get sick at least a few times a week. I wished medicine would help you – but it really didn’t make a difference.
The hardest part was that your symptoms hit you so fast that you would get a headache or feel really sick or tired with such short notice – and sometimes the moments would pass fast – usually most of your days you were still so energetic and just as happy as we all know you are.
At times it felt like it was an every day event where part of my day was spent holding you with head pain – and the next minute you were acting super silly.
We agreed with your neurologist that we’d repeat an EEG and see if results changed. We were asked to press the event button to alert them if you had any headaches – I we pressed that button a few too many times and I feared the results. Thankfully your EEG activity has not increased – and we were reassured that headaches were not happening with EEG activity – which was great news.
Over the first few months since your last shunt surgery we saw your neurosurgeon several times – she even reprogrammed your shunt 3 different times. The hope was that your shunt was only overdraining – a CT scan confirmed that was the case. Because it’s a programmable shunt she was able to change how much your shunt was draining the CSF fluid from your head. Your headaches still happen for brief periods of time even after reprogramming your shunt a few times.
In addition to nausea, gagging, and getting sick – you began to get abdominal pain. We began to grow more worried because there seemed to be so many symptoms happening. In September we did 3 different ultrasounds to rule out a pseudo cyst, to check on your bladder/kidney health, and to take a look at other parts of your stomach. All of the tests were inconclusive but every day you continued to complain of stomach pain, nausea, and somedays you were getting sick.
This September we signed you up to do intensive therapy. We had so many of our friends and family donate to help us pay for physical therapy that is not covered by insurance. You responded so amazing to this therapy and worked so hard. We truly love the therapists at Believe Therapy because they’ve helped you work so hard to get stronger and helped you have so much fun doing so.
During your therapy sessions you continued to work hard but you continued to have random headaches, stomach aches, and you began to complain of other pains. You had moments where you had brief pain hit you in your neck, shoulder, arm, hand and sides. A few times you also complained of knee pain and your little toes began to move more than we’re use to seeing. You do have some movement in your toes but due to your spina bifida it’s not a signifcant amount – but by September your toes began to twitch and move involuntarily. All these symptoms didn’t prevent you from working hard – you loved playing blast off, pretending to be a ninja, riding a pretend horse, flying like superman, playing football and basketball and pretending to launch like an angry bird.
The team at Believe Therapy helped you so much – and by the end of your intensive therapy you were beginning to stand in the therasuit for longer period than you had ever done before.
By the end of your therapy session I began to notice your left leg turning inward slightly. I’ve said all this time this year that your little legs are growing and that perhaps it’s just a little harder for you to control your legs and your balance. But before the end of September we noticed you beginning to trip more too – and on the day we saw your foot turning inward more we took this video. It was the first sign of changes in your mobility that often occur with tethered cord.
We put you through more tests, your second sedated MRI of the year to check on your brain and spine. Through it all you’re smiling.
With all the symptoms and pain you were experiencing we were truly expecting to see changes in your MRI – but really this test looks nearly the same as the last few you’ve had. Two years ago you underwent a chiari decompression to help improve symptoms you were experiencing – and we saw great improvements but this year your little body is telling us something is wrong. In this first MRI image you can see your spine and within it is the syrinx we’ve known has been present since you were a baby – it’s a common thing to happen with people who have hydrocephalus and typically isn’t a huge concern unless a person is experiencing symptoms. The more pressure within your spine in the area of your syrinx could impact how your body functions.
This second image of your spine shows your birth defect – and also the area where your spinal cord is tethered. Everyone living with spina bifida is considered to have a ‘tethered cord’ – essentially it means your nerves are intertwined in the scar tissue that formed after your birth defect was repaired. Usually doctors don’t intervene until a person is experiencing symptoms. Tethered cord can impact many functions in a body as a person grows – and happens most common in children between your age and the teenage years – it happens most when a person goes through major growth spurts. You’ve definitely grown a bunch this year. We began to suspect you might be experiencing tethered cord symptoms since September but agreed to find out the results of other tests that could help us confirm your body was experiencing a decrease in function.
A few weeks ago we had you go through a GI test – I admit i was fearful to head to a test that was ran by ‘nuclear medicine’ – but we were reassured by your GI doctor that it would help us better understand your stomach issues. This test required you eat food and take pictures several times over the course of several hours to see how quickly your food would move through your upper stomach. This test helped us rule out reflux and we were able to confirm that your stomach is ‘emptying’ food from your upper stomach very slowly. From a GI stand point we can give you medicine to help you some – but it has been one more sign that helps show your doctors that your body is experiencing neurological changes. By this point you also began showing signs of changes in your bowel function – which has been frustrating knowing we’ve come so far to help you be healthy and work towards continence and strive for independence in your own care.
This past week we took a trip up to Jacksonville to visit their urology team to do a urodynamics test. We met the most amazing team who truly cared and did all they could to accommodate your appointment in order to help your doctors do one final test to help us determine if surgery is needed. We left learning your bladder function has changed – it has decreased and the bladder pressure has increased. Over a long period of time it is not good for your body to experience the pressure we witnessed during the test and could impact your bladder and kidney function further. I left this test knowing you would need surgery.
We met with your neurosurgeon Wednesday. When we first arrived you walked around in her office for us. I noticed your leg turning inward more – and you began to trip a lot more. I have kept saying maybe you’re just growing and as your legs are getting longer maybe your just learning to walk with these new changes…but no, we know now that these are very clear indications that your spinal cord is tethered and that if we don’t intervene you may experience a permanent loss of function.
Your neurosurgeon is the best – really, she’s the one who helped us find optimism five years ago through a really tough decision…and here we have been the past few months suspecting we may have another tough decision ahead of us. Five years ago we were frightened of all of the challenges that may come with spina bifida – I still remember reading about tethered cord back then and thinking that we didn’t know how we’d care for a child who might have such significant medical needs. We prayed none of these things would happen to you…but Chance the day we vowed to continue your life – we vowed to love and protect you and make sure you received the care you needed to live the most amazing life possible. We hate knowing you have surgery ahead of you again – but we know this surgery is needed and may help improve the symptoms you’ve been experiencing.
We’re hopeful our family and friends don’t feel “sorry” or pity you for the challenges you have ahead. We trust they will help us show you the love and support you need to know you are loved and that you are strong enough to endure the challenges ahead of you. You were born with the strongest soul I know. Rather than questioning why this is happening or why you have to go through so much – we’d rather remind you and our loved ones that you were born with the strength to endure the challenges. We trust God’s purpose – even when we don’t quite understand it.
Chance our family is stronger with you here – and we will help you stay strong and show you all the love needed to see you through the medical moments you have ahead. We love you.