Amanda Kern

 

“It’s your reaction to adversity, not the adversity itself, that determines how your life’s story will develop.” ~Dieter Uchtdorf

Just over a week ago Chance underwent his 12th surgery, a chiari decompression surgery. Before his surgery and in the first hours following his surgery we were incredibly worried. We’ve heard from families who also have children with spina bifida and also from nurses and doctors that this isn’t the easiest surgery for a child to go through and it’s typically more painful than other surgeries like the shunt surgeries he’s been through in the past. He was admitted to the PICU that day after surgery and we could tell just how much pain he was in that first night. The first night I was up with him often as he’d cry in pain and the nurses would give him more pain medicine, usually morphine. We all agreed when he awoke when he showed signs of pain again that we’d switch him to a different pain medicine and try our best to get him back to normalcy with his eating and drinking routines. He woke up…a hot mess, but with the first signs of being alert and awake since surgery. That alone was a blessing for me. In the hours that followed I swear I could witness him not only regaining his strength, but I’m convinced this boy really does have super powers!

We were all in shock, when he woke up he wanted to sit up on his own. Typically after this surgery kids have a very stiff and painful neck and don’t want to move much at all.

He spent the first hour awake watching cartoons.

And he began to eat goldfish too. Yes, goldfish for breakfast…thankfully that made his morning.

Eating goldfish made him happy, and before we knew it he began to turn his head. We were amazed. And he was smiling. The nurses came in and saw him and were also amazed. They together said “he’s not suppose to be able to do this yet!”

In less than a day our baby boy began to show amazing signs of recovery because most kids are that stiff that they have no interest in sitting up or turning their necks and most kids require physical therapy before they ever leave the hospital.

Not Chance, he moved a good bit that first morning after surgery…and the doctors, therapists and nurses all came in to visit him and were amazed by how well he was doing.

He still had some pain and did get tired a little more quickly than normal, but he was in great spirits.

He enjoyed goldfish often that first day after surgery. Though I promise we ordered real food throughout day – it made his day to have pancakes and later in the day he was quite happy to ask for a cheese “burger”…so cute to hear him say “burger” over and over when we give him that option.

That first day following surgery he remained in great spirits…he was silly quite often but at times got a little frustrated being confined to a hospital bed.

During the time we were in the hospital I found myself beside his bed admiring his sweet little face and expressions. Amidst all the chaotic and heartbreaking moments it’s tough not to admire the beauty and strength in this little boy.

We love chick-fil-a, but after Chance’s 12th surgery we really adore them. They  had one of their cow characters come around to visit the kids and deliver ice cream and a little toy cow. He was so excited to meet the cow, and for the first time I heard him say “cow”.

Being confined to a bed most of the day we kept him occupied most of the day watching tv and playing with toys. We brought his little wrestling figures and half the day he was pretending they were wrestling.

We were so reassured that he was doing so well and his doctor said if he continued to do well she’d let him go home the following day. We held our breathe because we’ve heard that before during all his medical moments…and often times complications would interfere with his recovery. Though he was in good spirits majority of the day, there were still moments where we could tell he was still in pain.

By the evening the day after surgery Hope & Jaylen came to visit Chance and it made his day to play with them both and spend some time with them.

Jaylen was sad that his brother had to be in the hospital and was also sad after we allowed him to see his “boo boo” from surgery after he and Hope asked to see it. Looking back at the photos now, you can see how worried and sad he was…but boy do I adore Chance’s spirit…here this kid is recovering from surgery and he was doing his best to cheer his big brother up and reminding him that he’d be okay.

These silly moments were among some of the most memorable from the time Chance was in the hospital for this past surgery. He’s just so darn expressive these days.

And so full of love. Boy does he love to give kisses. As he was in so much pain in those first few hours after surgery – he’d often pause to give us kisses to remind us how much he loves us all.

Before the kids left for the evening Jason played Chance’s latest favorite song, “blurred lines” on his phone. He’s that in love with it that if it’s on in the van he’ll beg me to leave it on. And the moment he hears it he’ll do something to catch out attention – and then start dancing, usually mostly with his head…sometimes moving his upper body too. It’s so hilarious. We shared a video in facebook that night because it was just so darn funny to see him dancing to it – and we knew it’d help so many people smile who were keeping up with his recovery. We could sense by the end of the evening that he was doing so well that we may really be going home the next day.

The next day we were up early, and I was doing my best to find ways to keep him entertained. He was so over having so many wires connected to him. And thankfully by the morning the nurses were given the greenlight to take out his IV. So I let him sit in the chair and play on my phone to pass time.

This past month this little guy has been so clingy…it’s like kids just know when medical moments are going to happen…and then when they do – his clingy moments were a lot more frequent. I couldn’t step more than a few feet from him while he was awake or this was the type of reaction I’d get from him.

But if I was close…he’d play and remain content and so well behaved.

One of the most amazing things about all the time Chance has been in the hospital is that we’ve always had an outpour of love and support, especially online. Among those who have reached out to us our spina bifida “family” has been among the most supportive group out there…praying, visiting, calling, texting, emailing. Many had intentions to visit in the 3-5 day time period we anticipated being there. Thankfully we were able to go home earlier. Just as we were told we’d be discharged, little Jericho’s family drove from more than an hour away to stop in to visit Chance. We couldn’t feel more blessed to have so many sweet families praying for us…and boy was it a treat to see Chance’s little friend Jericho…my how he’s grown since I took that photo of him on the beach with his hand in the air!

Once we received word that we’d be discharged it was only a short time later and we were packing our things to go home. Chance was happy…of course playing his favorite song helped keep my clingy boy content while we gathered our things.

We’ve been home nearly a week…and many of you are curious to hear how Chance is doing. To be honest, it’s really tough to tell he even had surgery. Physically he’s totally back to himself. We’ve been watching his incision closely and doing our best to keep it clean and so far he seems to be healing great. We’re watching him really closely and follow up with his doctor next week to find out how we’ll monitor his progress post surgery. After his appointment next week we’re hopeful that we’ll have him back in physical therapy and a lot more of our normal day to day activity. So far he’s had no issues and after the first day home we’ve been able to completely stop his pain medication.

We’re convinced he may very well have super powers, but we also believe he’s got one of the best neurosurgeons too. We were so fearful of this surgery and believe it might be a more complex surgery than a shunt surgery. In that first day after surgery as his nurses were amazed by how well he was doing we all not only joked about his “super powers” but one of his nurses reassured us that he really has one of the best doctors and that her kids who undergo this chiari decompression surgery typically always recover faster.

I’d like to also think that the power of prayer has also worked in our favor once again…much like how we felt surrounded by prayer in the past, we really felt the embrace of so many of you praying for our baby boy. We can’t thank you all enough for your love and support. In addition to his super powers to recovering from such a tough surgery so fast, he also has done some amazing things this past week. In the past week his team has doubled it’s donations, thanks to all of you generous souls…though I can’t help but think how much sharing these trying moments he’s been going through have some how touched you all to open your hearts to give a little more. We can’t thank you all enough.

Really, though his greatest super power this week…hasn’t been recovering from surgery. Just yesterday we invited a couple over who just learned they were expecting a baby with spina bifida to visit our family to meet Chance and one of his friends who also has spina bifida. Those who have received the diagnosis know just how tough it is waiting to have a child who will be born with spina bifida…this little guy and one of his little friends helped us give another family some hope as they now face the uncertainties of spina bifida too. Yes, this kid has been through so much, but I’m continually amazed with how resilient his spirit is through every trying moment he’s been through…he finds a way to smile, and very little keeps him down for long. Surely his spirit will continue to bring hope to other families…and that in itself is an amazing super power for Super Chance to share with the world.

Up…up…and…Away…baby boy…I’m convinced you’re here not just as a blessing to our family…but as a blessing to other families to help them find the hope through some of the same experiences you’ve been through living with spina bifida.

“Trust life a little bit.” ~Maya Angelou

Earlier today Super Chance underwent his 12th surgery. We’ve done our best to update you through the day but wanted to pause to reflect a bit and share a bit better of an update than I was able to provide in brief social media posts.

Chance was scheduled for surgery this morning at 11am, this meant he went through several hours this morning not being able to eat or drink anything. Normally most kids would be super irritable by breakfast if they had those restrictions, thankfully he made it through to surgery time waiting through these limitations in such great spirits. He was incredibly silly as he got to meet a lot of new nurses and doctors before his surgery.

The toughest part before surgery, beyond waiting, are the last few moments knowing we’d have to let go of our baby boy so that he could undergo surgery. He’s been incredibly clingy this past month – perhaps it’s normal for his age, but he’s been far more clingy than we’re use to lately. Thankfully he’s still too young to really help him understand what’s going on so he didn’t seem scared or worried, but he clearly could sense some things were going on this morning. To help him stay calm before they took him back to surgery they gave him some medication – so thankfully he was beginning to get very tired in the moments before we had to say our goodbyes. It was tough not to leave the surgery area teary eyed with the worries and fears of having our baby boy going through another surgery…spending those first few moments praying and finding a way to allow myself to trust things would be okay.

Chance’s chiari decompression surgery lasted several hours. His neurosurgeon gave us an update after surgery was finished and said he did well and that it went as expected. He had a small portion of the bone of his skull removed today during surgery. After it was removed she said it was very evident that it helped alleviate a good bit of pressure that was being caused around his brain in that area. She reassured us that his incision was small, close to an inch, and that she was able to do his surgery without cutting much of his hair. It’s likely most will never see that scar with the length of hair he has now. I’ve had quite a few ask when we’ll cut his hair…and surely we’re still hesitant to consider cutting it too short. This is the 9th surgery he’s had on his sweet little head so we’re not so sure we’re ready to see so many scars on his head.

After surgery we were able to go back to the recovery area to be with him as they prepared to transport him to his room. He’s been admitted to the pediatric intensive care unit so that he can be closely monitored in the days ahead. We suspect he’ll only be here a few days but we can’t say with certainty. We’ll just have to pray his recovery goes smoothly with no complications. Today has been tough. I don’t think the reality really hit me until I first saw Chance after surgery. Our incredibly happy energetic child who was just acting so silly this morning before surgery is now in a great deal of pain. He is tired and drained from the effects of surgery and anesthesia. We’re doing our best to help control his pain and keep him comfortable, but only time will help. His neck is rather stiff and when he moves it it’s so heartbreaking to see the screams from our baby boy…crying in pain…and reaching to be held. Though I’ve been able to hold him for a bit today, we’ve done our best to make him comfortable in his crib so he can rest and heal.

For a few brief moments we’ve seen his eyes open, often in the midst of painful moments or just a mere gaze at us to ensure we were still right beside him.

Once we were in his PICU room late this afternoon the sunlight shined right down on his sweet face. I couldn’t help but spend a moment or two admiring our beautiful baby boy and praying that his pain will ease up soon. I miss his smiles.

Thank you all again for all the prayers you’ve sent our way. I’d like to think the hardest part (the surgery) is behind us, but I’m afraid the next few days may be a little harder seeing just how tough this surgery has been on our baby boy. But we have faith and trust his super powers will soon prevail and that his smiles will begin to reappear in the days ahead. Until then, we will continue to pray and stand beside him through these moments. Rest sweet boy, we need you better.

“You were given this life because you are strong enough to live it.” ~unknown

A dear friend shared this sentiment earlier this year, and surely it seems quite fitting to share tonight, the night prior to Chance’s 12th surgery. Nearly three years ago I didn’t quite know just how “strong” our baby boy would be…we trusted God then. And we’re trusting He’ll see our baby boy…and our family…through the moments ahead.

In the past week I’ve been a little overwhelmed with the amazing caring thoughts that have been sent our way…so many of you praying and offering to help. We’ve also had quite a few who must just be learning that our baby boy is about to undergo his 12th surgery in the morning. I realize I can be quite wordy and I am known to send updates online often, so my apologies if anyone feels out of the loop…but I really have done my best to keep our family, friends and those who have followed along on my blog and through social media updates when I’ve been able to so that sharing moments didn’t seem to shocking. I would love to be able to individually call, email, or text you all – but I will be honest, it’s impossible to keep up when my inbox and phone is flooded with text and voice messages. And to be honest, it gets to be draining to talk about such trying moments over and over again…even with our closest family and friends. I promise to continue to share updates when time permits. In the event any of you are still wondering about what has been going on with Chance, here are the most recent updates I’ve shared this month – it’s much easier to flip through them to really understand what we have ahead.

• Super Chance’s long overdue update (Aug 2, 2013) – sharing moments from this year, including the most recent concerns with his chiari malformation
• Another Super Chance update (Aug 10, 2013) – sharing his sleep study, ophthalmologist appointment, and moments from his most recent spina bifida clinic
• More updates (Aug 24, 2013) – sharing the news of the necessity of his chiari decompression surgery and an update regarding the need for an EEG test after his visit to his neurologist.
• EEG moments & preliminary results (Aug 30, 2013)

Chance’s surgery is scheduled for 11am at Arnold Palmer Hospital. He’ll be undergoing a chiari decompression surgery (you can read more about what that is here) to help relieve the pressure on his brain which will also help alleviate the syrinx that has formed in his spine. His neurosurgeon has told us surgery may last a few hours and that he may be in the hospital for 3-5 days so long as recovery goes smoothly. We thank you all who continue think of our family during these challenging medical moments our baby boy is going through. So many of you have asked what you can do to help…so I’ll share just a few simple suggestions:

• PRAY. Pray for our baby boy. Pray that his surgery is a success and he recovers quickly without complications. Pray for our family. Pray for our children to stay strong as we’ll have moments we’ll be apart from one another and for them to be reminded how much they are loved as we are spending time caring for Chance’s health. Pray for Chance’s neurosurgeon, who has to have one of the most stressful jobs in the world. Pray that the Big man will see her through this surgery to help alleviate the pressure going on inside his head. And while you’re praying, please say a prayer for all the other kids we know with spina bifida who are also in the hospital or who are still recovering from recent medical moments.
• GIVE. Help support the spina bifida cause. If you find yourself thinking of our baby boy and wish to help show support, we encourage you all reach out to show your support of not just Chance, but of all the kids & adults affected by spina bifida. It’s incredibly easy to do…and there’s no donation too small to help this community. Visit the donation page and choose to GIVE NOW. If everyone following Chance’s story donated even something as small as $5 we’d easily exceed our goals to help support families in central Florida affected by spina bifida.
• LIVE. I am so incredibly touched by all of you wishing to help our family and we’ll do our best to reach out if we really need help. Right now, we feel we have a good plan for the moments we have ahead and we’ll do our best to keep you all updated. But please, don’t you all worry yourselves too much…instead please take the time to live and enjoy the moments with your own families. Every moment we have with our loved ones are precious, every single minute…cherish them. I was reminded of it this weekend helping a very special family for Now I lay me down to sleep who lost their baby girl this weekend, as I was reminded how important it is to celebrate life, even through the most trying of moments. Yes, the medical moments we have ahead with our baby boy aren’t going to be easy…we will get through them…and we’ll find a way to make the most of every moment, even the challenging ones. Never forget to remind yourself how blessed your life is…make the most of the moments.

Dear Chance…I’ll try to stop asking “why” all these things are happening, surely God’s got great plans for you…there’s no doubt you’re touching quite a few lives. Your big sister has said that 12 surgeries is it, she demands that you need no more after this one. We wish it were that easy. We will see you through these moments baby boy…just as we have in the past. You are amazing kid, now it’s time to show off those super powers. But please, lets not try to show off too much, we’re praying for no complications and that you bounce back quickly. We love you kid.