Westyn’s Spina Bifida Journey

27/07/2025

A lot has happened since our last update. We got a second opinion with ortho at Shriners Hospital in Greenville, finally got a surgeon to hear our concerns, we have surgery for tendon lengthening, release and transfer scheduled for Tuesday to correct his clubbed feet. We got a wheelchair. I’ve been neglecting this page a but but I will try to be more on top of updates! I know I have other SB parents following along with us and our progress. It’s going to be a long six to eight weeks but we are so excited to see Westyn’s progress.❤️

06/03/2025

Yesterday we had an Ortho appointment. (He is still rear facing, we are sitting in the parking lot waiting on him to finish his sucker and he has a 360 car seat so it turns) Ortho did see more regression in his flexibility dorsiflexion and eversion, however he is content that we are making progression in physical therapy. Next month we will see our ortho surgeon to discuss our next steps. Our ortho doctor was hesitant to do serial recasting again basically weighing how long do we do the same treatment with the same outcome and at what point do we talk about more invasive treatments. We could have tried casting again until we see the surgeon, however we both agreed that the AFOs can offer him the same care of basically holding the feet in place to not worsen AND allow him to still participate in physical therapy, whereas the casts would temporarily put a halt on therapy treatments. We discussed another tenotomy, as well as Botox that was discussed by the physiotherapist at Spina bifida clinic, a tendon transplant and also weighing the option of when do we intervene with his tethered spinal cord that could be playing into his multiple relapses. Who would have thought that the worst specialty and condition would have been the clubbed feet? Whew, what a journey it has been. But we have a happy, overall healthy boy so we can’t complain much.

04/02/2025

Surprise! We got our walker and, we’re off! He is doing amazing and we are so happy and tickled at his progress.

21/11/2024

24/10/2024

Short and sweet update! No more cast, no surgery, and waiting on our new AFOs to come in! We are getting longer ones to hopefully help with stability and less pressure wounds. We will also soon be starting Physical Therapy twice a week because his therapist said she thinks he will benefit from more frequency. He had his evaluation for PT last week, and he definitely made positive strides even with a cast on! We don’t have scores back yet, but hopefully next week we will. We are thinking he will have about a 10 point increase from the last evaluation which is great! One step closer to getting him even remotely close to an age appropriate level.

27/09/2024

This might be a repeat for some that have read our personal page but I realized I never updated this page and haven’t in a while. We got Westyn’s results from his Urodynamic Study. His last study showed that bladder size was normal, there was no reflux of urine back into the kidneys, and that he was emptying completely on its own, this study was the same. However, last study showed that he did have overactivity of contractions while emptying. This was not indicated on this study, and the doctor said this was the healthiest urinary system he has seen in a Spina Bifida baby. It also seems as if the mysterious hydronephrosis they saw previously has completely gone away. His kidneys are now an age appropriate size. The last scan in January indicated that his upper region of the kidneys were slightly dilated, however it confused the two doctors on his case since there was no urine backed up to indicate that it was your “true” hydronephrosis (since no fluid was detected). We will continue Urodynamic studies yearly until he is 5, and now we can move from renal ultrasounds being every 3-6 months to yearly as well!

We also saw neurosurgery two weeks ago and he is so pleased with Westyn’s progress. His soft spot is now closed which gives us and indication that the shunt is working properly and there’s not a buildup of fluid. We will no longer be having cranial ultrasounds since the soft spot is closed, and instead will be having cranial MRI’s going forward. His next one we will do when he’s two.

Second update that might be slightly new news for people that follow our personal page: it’s a few weeks after I did the neuro and urology update. This week we saw the orthopedic surgeon to determine what we were going to do about the consistent relapse of Westyn’s right foot and the frequent pressure wounds he gets because the right foot is relapsing. Without his AFOs Westyn naturally stands on his ankles, so physical therapy has kinda been at a halt since getting another pressure wound a little over a month ago. He is very eager to stand and is even trying to let go of surfaces seeing what he’s capable of trying to stand solo. But in order to walk he needs to be on the sole of his feet, which is where the AFOs come in. If he can’t be in them, he can’t stand like he needs to. Westyn is now back in a cast for a few weeks, the surgeon is testing 3-4 weeks of serial casting to see how the foot responds. If it doesn’t respond like she wants to see we will be having a second tenotomy surgery on the right side. However, even if it does respond initially, if he has one more surgery after this round of serial casting, it will just end up resulting in the tenotomy either way. Which, at this point I’m pushing for because I’d rather just have it done while he’s young than put it off and end up having it anyways and more time goes by that he’s unable to learn to walk due to the deformation. Another issue he is having is he was diagnosed this week with tibial torsion, meaning the tibia bone in the leg is turning inward basically causing him to be “pigeon toed”. So on top of not being able to properly stand on the bottom on his feet, he’s tripping over his other foot because of the torsion when trying to take steps. It’s possible with growth he could outgrow this, or that along with braces, derotation straps may have to be added with his therapies. His case isn’t extremely severe so it’s doubtful that they would do surgery on him unless it’s causing hip dysplasia in the future. But for now the main goal is getting him back into his braces with a foot that’s fully corrected! This baby is so ready to walk. Prayers for a good outcome either way this journey leads us.🙏🏼

“I can do all things through Christ who strengthens me” Philippians 4:13

07/08/2024

After a MONTH of waiting for results we finally got Westyn’s Renal Ultrasound results! His ultrasound showed a normal bladder and kidneys! While, the upper region of his kidneys are still slightly dilated according to the “norm”, they haven’t increased so it COULD just be how his organs are. (Fingers crossed and praying so) I have been making myself sick (physically) waiting on these results because I just knew another bomb was going to be dropped. I even had cathing supplies saved in my Amazon cart anticipating getting bad news today. It is common for kids with spina bifida to have frequent urinary tract infections, to be cathedarized, kidney issues and even kidney failure. This has always been in the back of most mind but especially after getting an abnormal ultrasound six months ago. Even though his condition isn’t ideal I’m SO thankful for the positive strides we do and continue to see in our miracle baby. Being a special needs mama is not something I ever thought I’d be but I can’t imagine our life without this little boy. I’ve come a long way from where I used to be in accepting his condition. I’ve realized that he is where he is today because he is strong, and because I advocate for him instead of letting it box him into statistics. He might need a little help in areas, and he might have to do things a little differently than other kids his age, but through every single life hurdle, I will be the voice saying you can, and you will.

23/07/2024

We are working on standing on our feet/legs and how to operate his AFO’s to do purposeful movement in PT (rather than just dragging them around). He’s also working on learning how to safely go up and down stairs. A local school art teacher made this for the practice we are at and it is so well thought out. On one side you have shorter steps for babies and on the other side is regular size stairs for older kiddos. The wood is sanded perfectly into rounded edges to not have the littles get hurt on it. The side also comes off if needed to give the PT the option to practice jumping with older kids. We thought it was so neat. Video in the comments of Wes practicing.

23/07/2024

Hey everyone! Long time no update. We will have a few posts today and another in the next few days (hopefully)…Just to show yall a little look into our lives… all yellow are medical appts for our kids for the month of July and August. And more definitely get added to that as the time gets closer depending on if we are having issues. Some months are more hectic while others are slower months with mostly PT for Wes and ST for Jensyn. Add that in with back to school shenanigans and everyday life and we are running around like chickens with no heads some days. 😅

18/06/2024

We got the call from neuro today and we are NOT doing surgery at this time on the tethered cord. The neurosurgeon feels like he is too little to do this big of a surgery right now unless his abilities significantly change. This is exactly the news we were praying for. So, for now we will be doing serial casting with ortho and possibly doing a second tenotomy (clipping the Achilles tendon) on the right foot if the castings do not work out. Which is a much smaller surgery than a de-tethering repair on the spinal cord. Hallelujah! Thank you everyone for your prayers because today we felt them! At any time things COULD change since inevitably he will eventually have this surgery, but with Gods help we are praying to make it out of the infant/toddler stage to lessen some risks associated with the surgery. We are forever grateful for the outpouring of love and prayers our village always gives us.

14/06/2024

We saw ortho today and surgery is still on the table, however we are going to try everything before resulting to surgery. So, we are back in a cast on the right leg. The thought is if there is change in the foot abduction with serial casting the problem could be just a foot issue and we won’t need to jump so soon into the de-tethering surgery and give him more time to grow. Ultimately, the surgery will have to be done eventually, but it’s not ideal at this age to do so unless it’s pressing circumstances. If the foot doesn’t not change with castings, it gives us a good indication that it is neurological because in that case, the foot will not get better until the neurological issue is resolved. For reference the right foot two weeks ago was abducting at about 10 degrees with a -10 degree dorsiflexion. Today it has worsened and the abduction will only go into a neutral position which means it’s not rotating out like it should (ideally we want it at 30 degrees). The dorsiflexion won’t even go into a neutral position which would the the flexibility needed to stand on the bottom of your foot. (Normal we would like to see around 20 degrees) So in that short amount of time it has continued to worsen. Come early next week neuro could make their own decision to go ahead with the surgery, but as of right now ortho wants to give him 3-4 weeks casting to make sure we’ve gone every route possible before jumping into a de-tethering surgery. Westyn was not happy about it initially, but we are now home and he is already crawling around pulling up on stuff. Nothing is gonna stop this cutie from getting where he wants to go. If we make it to early next week and there is not update, it will mean that we are going to try the casting for a while. If not, I will update with if we will be proceeding with surgery.