Journal entry by Jenna Peterson —
We’ve had an eventful start to 2019, including a hospital stay, new therapies, multiple appointments, two MRIs, and Jenna heading back to work. Phew! Thankfully, through most of this, minus the blood draws and IV attempts, Jack kept his playful personality and charmed all of the doctors and nurses with his giggles and million dollar, but still toothless, smile.
In January, Jack celebrated his first miracle day, also known as his butt day or sneak peak day. Jack decided he wanted to honor this memorable, life-changing day by sending care packages to other fetal surgery families. We packed up three boxes and shipped them off to three families in different parts of the country. Our supportive, talented friend, Sara Carter, owner of the Etsy shop, Matty J Designs, made some custom items for us to send to sprinkle joy to other mamas on bedrest. We hope to make this an annual event!
Jack is sitting like a champ now and can do so completely unassisted for a minute or two. He can sit on the bed or with something in front of him to hold onto for much longer. We have worked on this for months, so we are extremely proud of this major accomplishment. We can tell that he is loving the independence and feeling like a big kid. He has no problem vocalizing his wants and regularly reminds us that he is too old to be playing on his back by crying out when he's on it!
As many of you saw, he received his Bella's Bumba wheelchair a few weeks ago. He loves to ride around in it when we push him, and he's even started to move the wheels himself. It's exciting to see him gain this independence!
He loves to eat his purees, and we are starting to move him to thicker foods. He is a big fan of sweet potatoes, carrots, and all fruits. We have to sneak the green vegetables. He is learning how to hold his own bottle and is looking like such a big boy these days. He recently learned how to wave and waves at everything and everyone, including himself in the reflection of the mirror, stove, fireplace. It might be the cutest thing we've ever seen. He just started to dance, which looks more like rocking back and forth and bouncing a bit, but it's adorable. He's sleeping through the night and has been for months, so we are incredibly thankful for that gift! He has the sweetest giggle and is a big fan of playing "Where's Mommy?" This pretty much guarantees a laugh or smile. His favorite toys are puzzles, cups, books, a plastic hammer, and blocks. He's babbling up a storm and says, "ma-ma-ma" a lot, but I don't think it's intentional yet. We're still working on that milestone!
Medical Updates
The Fun Stuff!
Jack recently started aqua therapy to help build his core and stimulate leg movement. Much to our surprise (he used to despise baths, so we were nervous about how he would react to the pool), he loved it and was splashing in the pool by the time the first session was completed. We like seeing him play in the water and are proud of how much growth we've seen in his core strength.
In January, Jack celebrated his first miracle day, also known as his butt day or sneak peak day. Jack decided he wanted to honor this memorable, life-changing day by sending care packages to other fetal surgery families. We packed up three boxes and shipped them off to three families in different parts of the country. Our supportive, talented friend, Sara Carter, owner of the Etsy shop, Matty J Designs, made some custom items for us to send to sprinkle joy to other mamas on bedrest. We hope to make this an annual event!
Jack is sitting like a champ now and can do so completely unassisted for a minute or two. He can sit on the bed or with something in front of him to hold onto for much longer. We have worked on this for months, so we are extremely proud of this major accomplishment. We can tell that he is loving the independence and feeling like a big kid. He has no problem vocalizing his wants and regularly reminds us that he is too old to be playing on his back by crying out when he's on it!
As many of you saw, he received his Bella's Bumba wheelchair a few weeks ago. He loves to ride around in it when we push him, and he's even started to move the wheels himself. It's exciting to see him gain this independence!
He loves to eat his purees, and we are starting to move him to thicker foods. He is a big fan of sweet potatoes, carrots, and all fruits. We have to sneak the green vegetables. He is learning how to hold his own bottle and is looking like such a big boy these days. He recently learned how to wave and waves at everything and everyone, including himself in the reflection of the mirror, stove, fireplace. It might be the cutest thing we've ever seen. He just started to dance, which looks more like rocking back and forth and bouncing a bit, but it's adorable. He's sleeping through the night and has been for months, so we are incredibly thankful for that gift! He has the sweetest giggle and is a big fan of playing "Where's Mommy?" This pretty much guarantees a laugh or smile. His favorite toys are puzzles, cups, books, a plastic hammer, and blocks. He's babbling up a storm and says, "ma-ma-ma" a lot, but I don't think it's intentional yet. We're still working on that milestone!
Jack landed in the hospital in January for some kidney and urinary issues. We've added some additional medications and interventions to help resolve these issues completely, but we have not found the right combination yet. We are working with UNC's pediatric urology and nephrology teams to determine the cause of the issues. He will have a sedated scan of his renal system in two weeks to try to pinpoint what's causing him to have repeat infections and additional fluid on his kidneys. When the situation flares to an infection, like it did this week, Jack's in pain, doesn't want to eat, and his happy demeanor disappears. It's heartbreaking to watch him this way, and we are working tirelessly to try to resolve this issue. Doctors have speculated at the cause and have given us a realm of treatment options including multiple types of surgeries, but we have to figure out the root cause before we can determine the best plan of treatment. Right now, the treatment is just a temporary fix an attempt to limit the number of infections and any additional fluid build up, but the goal is to eliminate the fluid and the infections all together. Living with this constant unknown is exhausting on our hearts and minds. Please keep us in your thoughts and prayers as Jack endures yet another scan; this time with sedation, which adds an additional layer of fear and worry. We hope it yields some answers.
In January, Jack had another brain MRI which showed slight growth of his ventricles but still not enough to intervene at this time. Our next MRI is scheduled for the week before Jack’s first birthday (how is our sweet five pounder almost one?), so we hope that his ventricles remain stable, and he does not need a shunt to drain the excess cerebral spinal fluid. It is less likely to need a shunt after the first year of age, but it's not out of the question. The upcoming scan though is the biggest one yet, so we are extremely nervous about the results.
When Jack had the scan of his brain, they also did an MRI of his spine to look for any additional abnormalities. We pushed for the MRI of his spine because Jack's function is different than the diagnosis we received last year. Jack's defect, or split in his spinal cord, began at Lumbar Vertebrae 3, which means that he should have some function and sensation to his knees. However, he does not have movement or sensation below the waist. Research also indicates that a good percentage of babies that have undergone fetal surgery function even better than predicted because the amniotic fluid is no longer causing damage to the nerves. Unfortunately, we are not reaping this benefit, and Jack is showing very little to no leg movement.
The MRI did not show any additional abnormalities, and the doctors do not have a clear answer for us as to why Jack's function is not as predicted. They can't explain it themselves and have used the term "medical mystery" far too often with us. Based on the function Jack currently has, we were told it is unlikely that he will ever walk. However, we're not taking this as gospel and will continue to work with his orthopedic surgeon, orthotist, and his team of therapists to give him the best chance at walking that we possibly can. Mobility will not define Jack's life or ours, but it was still difficult to hear the doctors say.
We added in Occupational Therapy to Jack's weekly rotation to help with his fine motor skills and upper body strength. Although Spina Bifida does not directly affect the upper extremities, there are often some delays as a result of the gross motor delays. We noticed that Jack was behind in some fine motor milestones, so we wanted to address those sooner, rather than later. He is picking up the skills quickly; we're really proud of his hard work.
Most weeks Jack has 3-4 therapies per week. It's a lot to balance for all of us, and we struggle with determining the right frequency for Jack, but we're hopeful that we're giving him the tools he needs to be successful.
Jenna's Health
I was cleared to start running again, albeit very minimally, in January. My return has been extremely slow and methodical. After 16 months of little to no activity, I am beyond happy to be able to stretch my legs a bit again. I am continuing to work with a pulmonologist to determine if there are any long term health issues from the pulmonary embolism I suffered after Jack's surgery. Given the size, severity, and location of the clot, which nearly blocked my entire pulmonary artery, the hematologist and pulmonologist have warned me that there could be long term damage. They regularly remind me that it's a miracle that Jack and me are here today! They are cautiously optimistic that there will not be any long term effects, given my age and how healthy I was prior to the PE. I am not showing any obvious symptoms, so they have instructed me to try to get back in shape because that will be the best evaluative tool. I signed up a local St. Patrick's Day 8K. For the first time in as long as I can remember, I am not trying to PR or hit a specific time goal. I just want to be there, be a part of the energy and buzz that a race creates. I want to feel a part of the running a community, a community that has defined my life for the past 10 years. Most importantly, I want to show Jack that when life becomes challenging or throws unexpected curveball after unexpected curveball, that we keep showing up.
Approaching a Year
When Jack had the scan of his brain, they also did an MRI of his spine to look for any additional abnormalities. We pushed for the MRI of his spine because Jack's function is different than the diagnosis we received last year. Jack's defect, or split in his spinal cord, began at Lumbar Vertebrae 3, which means that he should have some function and sensation to his knees. However, he does not have movement or sensation below the waist. Research also indicates that a good percentage of babies that have undergone fetal surgery function even better than predicted because the amniotic fluid is no longer causing damage to the nerves. Unfortunately, we are not reaping this benefit, and Jack is showing very little to no leg movement.
The MRI did not show any additional abnormalities, and the doctors do not have a clear answer for us as to why Jack's function is not as predicted. They can't explain it themselves and have used the term "medical mystery" far too often with us. Based on the function Jack currently has, we were told it is unlikely that he will ever walk. However, we're not taking this as gospel and will continue to work with his orthopedic surgeon, orthotist, and his team of therapists to give him the best chance at walking that we possibly can. Mobility will not define Jack's life or ours, but it was still difficult to hear the doctors say.
We added in Occupational Therapy to Jack's weekly rotation to help with his fine motor skills and upper body strength. Although Spina Bifida does not directly affect the upper extremities, there are often some delays as a result of the gross motor delays. We noticed that Jack was behind in some fine motor milestones, so we wanted to address those sooner, rather than later. He is picking up the skills quickly; we're really proud of his hard work.
Most weeks Jack has 3-4 therapies per week. It's a lot to balance for all of us, and we struggle with determining the right frequency for Jack, but we're hopeful that we're giving him the tools he needs to be successful.
Jenna's Health
I was cleared to start running again, albeit very minimally, in January. My return has been extremely slow and methodical. After 16 months of little to no activity, I am beyond happy to be able to stretch my legs a bit again. I am continuing to work with a pulmonologist to determine if there are any long term health issues from the pulmonary embolism I suffered after Jack's surgery. Given the size, severity, and location of the clot, which nearly blocked my entire pulmonary artery, the hematologist and pulmonologist have warned me that there could be long term damage. They regularly remind me that it's a miracle that Jack and me are here today! They are cautiously optimistic that there will not be any long term effects, given my age and how healthy I was prior to the PE. I am not showing any obvious symptoms, so they have instructed me to try to get back in shape because that will be the best evaluative tool. I signed up a local St. Patrick's Day 8K. For the first time in as long as I can remember, I am not trying to PR or hit a specific time goal. I just want to be there, be a part of the energy and buzz that a race creates. I want to feel a part of the running a community, a community that has defined my life for the past 10 years. Most importantly, I want to show Jack that when life becomes challenging or throws unexpected curveball after unexpected curveball, that we keep showing up.
Approaching a Year
Before we know it, we will be celebrating his first birthday. It's nearly impossibly for me to believe that it’s been a year since his arrival. There have been some incredibly hard moments throughout the last year; conversations, worries, and choices I would not wish upon anyone. But our little man is resilient and strong. He's happy and loved. He's full of life and spunk. He brings us a sense of joy unmatched by anything else. His life is full of possibilities and opportunities; Spina Bifida is only a smart part of who he is. We're grateful that we were chosen to be his parents.
Thank you for being on this journey with us, for lifting us up when we needed it, for bringing us meals and mowing our lawn, for sending care packages and cards, for listening to us as we faced stressful appointments and tests, for becoming educated about Spina Bifida and advocating for Jack and other children with different abilities, for taking time out of your busy lives to be a part of our enormous village, for you empathy, love, and friendship.
We love you.
- Jenna, Kevin, Jack, and Kolohe (She's been a great girl, but doesn't get the attention she was used to!)
Thank you for being on this journey with us, for lifting us up when we needed it, for bringing us meals and mowing our lawn, for sending care packages and cards, for listening to us as we faced stressful appointments and tests, for becoming educated about Spina Bifida and advocating for Jack and other children with different abilities, for taking time out of your busy lives to be a part of our enormous village, for you empathy, love, and friendship.
We love you.
- Jenna, Kevin, Jack, and Kolohe (She's been a great girl, but doesn't get the attention she was used to!)
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