Kaiden's Journey to Recovery: Your Help Needed

**edited 3/1/25- on top of everything you read below, Kaiden has now been diagnosed with B Cell Lymphoblastic Leukemia! He was diagnosed on 1/30 and started treatment just a week later. This was a major shock and completely unexpected! He did undergo a 4.5hr surgery, and the leukemia was found afterwards due to labwork never being done prior to surgery.  I am now out of work for the next 1 to 2 years, as his treatment plan is for 2.5 years. 

So this may be a little lengthy, but I appreciate anyone who takes the time to read it.

Kaiden James was born unexpectedly at 29 weeks and only 3 pounds due to vasa previa with a bilobed placenta.

After spending 60 days in the NICU, and against all odds, my baby boy came home with a clean bill of health, only needing an apnea monitor for about 2 weeks.

After following up with every specialist under the sun for about 6 months to confirm he would have no health concerns, around the age of 1, Kaiden was starting to walk and would have sudden episodes of SCREAMING! Out of the blue, and for no reason to be seen. After multiple visits to the ER and pediatrician, we finally got a referral to an orthopedic in St. Petersburg at All Children’s Hospital.

Kaiden was 2 at this point, and after another round of radiographs, he was diagnosed with Femoral Anteversion and toe walking.

At this point, we were given an order for physical therapy and AFO braces. He was in custom-made braces for 6 weeks for the toe walking, but his anteversion, we were told, he would outgrow.

Over the next couple of years, we had regular follow-ups every 6 months with the orthopedic with no additional options. As a growing toddler, due to his femoral anteversion, Kaiden was tripping and falling often. Unable to keep up with his classmates and sibling, it breaks a mother's heart to see this.

Both of his feet turn inward, causing him to trip over himself. He goes through random episodes of leg and back pain, to the point he’s crying and unable to stand.

After moving to Lakeland 2 years ago, we needed to find another orthopedic to follow up with.

That’s when we found Dr. Khoury out of Nemours Children’s Health.

I’ll never forget our very first visit. Dr. Khoury did his physical exam and sat down with us. His words to me were, I know we just met, so I’m sorry to bring up a sensitive topic, but has anyone ever talked to you about Cerebral Palsy?

SHOCKED, I said No! Given Kaiden's medical background, not ONE. SINGLE. SPECIALIST. ever mentioned it!

Dr. Khoury believed he has CP but wanted us to follow up with neurology to confirm, along with another set of radiographs to confirm his femoral anteversion.

During our visit with Dr. Rossi (neuro), he also believed Kaiden to have CP but ordered a sedated MRI to confirm.

After his MRI and radiographs, he was officially diagnosed with Spastic Diplegia (CP) and Femoral Anteversion.

Kaiden is now scheduled for a GASTROCNEMIUS RECESSION where they will lengthen his tendons and an OSTEOTOMY, INTERTROCHANTERIC/SUBTROCHANTERIC W/ INT/EXT FIXATION/CAST where they will rotate his hips and insert plates.

Kaiden will be hospitalized for days following, then released on bed rest and non-weight bearing for months to follow.

Kaiden, only 6 years old, will be confined to a wheelchair for a minimum of 6 weeks, undergo vigorous PT twice a day, 3 days a week for 3-6 months until he is cleared for full activity again. Around 6-12 months after surgery, depending on his recovery, he will undergo another brief surgery to remove the plates that were placed.

Kaiden is so optimistic and has been prepared for his surgery. All he can think about is running faster, playing sports, and fixing his “crooked legs” as he calls them!

Kaiden will be out of school during his recovery and will be homeschooled by a teacher that will come to the house every day for him.

This is going to be a very long journey for him, but I want to make sure he is as comfortable as he can be. For a 6-year-old boy, that is already so active, outgoing, and loves exploring, it’s going to kill me to see him in any pain, or him not being able to get out of his wheelchair for weeks at a time!

I'm going to have to stay home with him during this time, and it’s very stressful to think about money at a time like this. However, bills don’t stop, and I still have two other children who depend on me as well.

I have never done something like this, but without my income, I’m going to have to take things day by day.

Times are tough for everyone right now, I get that. If you are unable to donate, I completely understand. If you made it this far, thank you for taking the time to read!

If you are able to donate, please know it is greatly, deeply, and so very much appreciated!

No one ever expects to have their child go through a major surgery!