The boys had a good session with speech therapy today. Jax has his own rendition of saying "high five" and a few other things not understood by the general public, but we know :)
Jax hasn't been doing well in the mornings lately. He had 3 episodes by 10:30am today. I hope it doesn't mean he's coming down with ANOTHER bug, and maybe just his GI cycle acting up. He's still doing decent with his lunch and dinner, so that's a positive.
I had a long conversation with the chiropractor and speech therapist this week about Jax's condition. I wanted to get their opinions since they've known him almost his whole life and have been people in his life trying to improve the quality of his life. I know the subject of mitochondrial disease is going to be coming up at Jax's appt on Monday with the GI/Feeding Team, and I've been trying to get my thoughts straight about it ahead of time. With Jax's latest lung issues, I know it's inevitable to come back up.
To catch any of you up, Jax was considered to have this disease when he was diagnosed with pseudo obstruction. It's very common for babies/children with motility issues to have mito issues since the cells in the body don't have enough energy to produce food/oxygen and the nerve function in the gut get affected first. Thus the body doesn't work properly. Jax had blood testing done at 9 months old and the results were 'inconclusive', so the term "suspected mild mitochondrial disorder" has always remained on his file. We decided to treat Jaxon as if he had an immature system due to his low blood flow in utero as the result for his issues and prematurity, unless his system failed to improve or new symptoms presented.
Well... it may be time to look back into this. The reason we didn't move forward with more testing was because the next way to test is a bit invasive (muscle biopsy) so we wanted more reasons to test. Jax was actually treated for cellular energy issues from the alternative doc since he tested to have a dysfunction through all that independent testing we had done (so that of course is always in the back of my head).
Having this diagnosis would only give his issues a name, and of course have us change his treatment a bit. There's no cure, and it's thought to be mostly a childhood disorder since the progression of the disease doesn't allow many children to become adults, but there's always ways to support it, not to mention there's hundreds of different kinds and severities. We also need to know since this is genetic. Now there's all sorts of reasons as to why Jax would have this and not Brady, or it's possible Brady does too and it will show up later or only get turned on from viral infections etc etc. There are so many IFs, that it can drive a person crazy. Which has slightly been happening to me since Jax had pneumonia. I've been a bit of a wreck and find myself in tearful conversations with Jax's "people".
I'm hoping for the best, of course, but the looming thought takes me some days. I don't do well with unknown, especially when it's my child. I just need some control, and if that's a name or a diagnosis, I can at least fight the fight.
So not to end this on a downer (sorry, thanks for the therapy), since of course it IS possible that Jax will be walking, talking, eating and breathing just like all the other kids walking into kindergarten, so I keep my chin up. And I know you all do too, so that helps. Thank you.
Never to leave us without a smile, here's Brady who decided to blow on his tongue to make crazy noises all day today.
I also keep finding Brady stealing every piece of paper he can to color on it. Here he is with the 10th envelope or so this week. Mind you, he's about 10 ft away from coloring books and note pads. Is it irony that he's lounging on the "naughty couch"? Hmmm, we may have to re-think that one.
If anyone would like to read about mitochondrial disease, this a great site with all the info you could ever want. http://www.umdf.org/site/c.otJVJ7MMIqE/b.5472191/k.BDB0/Home.htm