07/12/2024
It’s been a while since an update on baby J, so buckle up, grab a drink and a snack- it’s a long one!
Jayden had his 2 year old MRI back in January to get a more accurate depiction of what his brain is looking like as his white matter has developed. We were able to read the “impressions” ourselves to get a basic understanding but just recently saw his neurologist to go over future steps with her.
We were able to finally take a FAMILY VACATION out of the COUNTRY!!! In April, we were able to go to Mexico which was a goal we set LAST July at the BBOP camp we went to. Back at that time, it seemed impossible and felt like a fever dream that would never happen. Between his oxygen, feeding pump, seizures, illnesses, and everything else that was so unexpected- I said there was no way we could go on a plane. As he’s continued to get better, the doctors cleared him and off we went!!! It was the most magical, amazing and unbelievable trip I’ve ever been on. It’s crazy how differently you look at taking a trip that used to seem so simple, after it’s not. Packing all his liquid medications, formula, rescue medications, medical equipment, doctors notes stating that we needed this stuff for him, getting TSA escorts through the airport… phew… it wasn’t for the weak! But, WE DID IT!
The company who employed his occupational therapist let her go because she didn’t have a “full case load” so I went through a complete mental breakdown over that feeling like I was failing him and that he was going to fall even more behind developmentally because of this. They had NO solution except for virtual OT, and virtual OT is NOT going to benefit him in the slightest.
Jayden had a follow up with his AEROdigestive team and we reduced the depth of his g-tube since he’s growing so well! We changed his formula to a new puréed meals blend which is really helping him! He was then also referred to the Marcus Feeding Clinic, which they approved him for their intensive feeding therapy. We go on the 22nd for a team eval, his feeding therapy will consist of us driving to ATL every day for 5 days a week, 6 hours a day for 4 weeks… (I have NO idea how anyone does this!) This should allow him to be able to eat 4 different proteins, vegetables, fruits and starches!
We also had a small set back with some allergies and breathing troubles at night, so we did get a vibrating chest vest for him to help vibrate his chest to essentially “shake” the gunk out of his lungs which helped drastically!
Jayden was also invited for a taped Bayley study for the BBOP lab which he also did AMAZING on the cognitive portion, he is very behind on his speech but he totally understands what you’re saying to him and how to follow directions!
We followed up with his physiatrist who referred him to transfer from his AFO braces to SMO’s. He’s doing SO well on walking and cruising furniture now! His balance has improved dramatically as well! He was also referred to a developmental pediatrician to help with his CP and a sensory diagnosis.
Now for the downside- his neurologist went over the MRI and said that his malformation is significantly larger than what was originally thought. His malformation is mainly on his left side (which affects his ride side of his body) but it does also go to the right side of his brain as well. Based on the size of his malformation, he is expected to have seizures as he’s growing. The doctor did up his seizure medication since while we were on vacation in Mexico he did have a few febrile seizures. If over the next few months he continues to experience any seizures, we will have to have him admitted to the EMU for a 5 day EEG to evaluate his brain activity. IF the abnormal activity he’s having maintains from the last time or increases, we will be discussing a hemispherectomy for Jayden before he turns 4.
Wednesday have found that Jayden is extremely motivated by baseball! Watching and cheering on his brothers or the Braves, or playing himself- baseball is what motivates Jayden to walk, throw, and engage! Baseball basically rules our lives 🤣🤣🤣 but, I wouldn’t have it any other way!
Overall, he’s continuing to grow and develop and he’s been healthy and that’s ALL that we can ask for! Please keep baby J in your prayers as these battles continue to be present for him 🖤🖤🖤
Thank you for all the love and support!
