So, it’s been awhile since my last blog post & this one won’t be a long one because Jaxson is seriously doing so well right now. Despite a couple minor hiccups with his central line nothing major has happened. Yesterday was one of the hardest days in awhile- his home health nurse came to draw labs and couldn’t get blood return, so I suggested trying to poke him. These labs were requested last Friday and we were out of town so I had to reschedule; they’re kind of important to keep his place on the transplant list & we were already going on day 5 after they were requested. Anyway, I immediately realized that I made a bad decision because I remembered how hard if a stick he was (to get IVs in, multiple nurses & an ultrasound is involved). So after holding him down for ten minutes trying to find a good vein, myself and the home health nurse decided it was best to wait another day until they could administer a clot buster in his broviac in order to get blood return & draw labs through the line without pain. No matter how many times I do it, holding my child down while he’s wiggling and screaming does not get easier.
This morning we finally had the follow up appointment with neurology. They called me with results after the EEG and MRI came back and all was normal. At at this appointment she went more in depth and explained two more options to explore before going back to the orthopedic doctor to assess his leg/foot problem. One option was genetic testing and the other was an MRI of the spine. The MRI will require anesthesia and the genetic testing will just be added into next months labs.
He starts school next week and I know he is so excited and ready to get back into his routine. I haven’t noticed any regression this summer which is so good. He has learned so much, including more words, he will try to sing along to the ABC’s and count to 5. It’s amazing to finally see constant progression.
Lastly, I’d like to mention that Sunday (July 30th) is Gastroschisis Awareness Day- which would be a great day to wear your JaxsonsGotGuts shirt and post to social media using the hashtag #GastroschisisAwarenessDay and #JaxsonsGotGuts. I’ll be writing another blog post on that day with facts and Jaxsons story.
As always, thank you for the continued support.