The "is it Friday yet?" update on Jenelle

Well, Jenelle has had a bunch of doctor's appointments this week and it is only Tuesday! Whew! I took Jenelle to the GI doctor on Monday and she has gained a pound since our last visit- yay! Recently, I've noticed that Jenelle is sometimes "choking" on her saliva - sometimes it is so bad I have to use a bulb syringe to help her get it out so she can breath. I asked the doctor if this was a common side effect from the G-Tube and apparently what I'm describing is reflux. Makes sense really - now that Jenelle is being "force fed" (for lack of better words) she is having some issues with the food she is eating. Jenelle's low muscle tone has always made it difficult when she vomits, so really this is why it appears she is choking. So, Jenelle is going back on Zantac (She has never had reflux issues before, but has been on Zantac while she was on ACTH and recently when we thought she had some stomach upset after Keto.) Jenelle also got her new AFOs yesterday (pink again!) I forgot my camera - sorry! Today we saw her Kidney Doctor and her bi-carb level is low again and down to 18. This is not critically low, but she'd prefer it be higher. The doctor is not concerned at this time because Jenelle is so alert, so we will need to re-check the levels in a month or so.

As far as seizures are concerned, we haven't seen a grand mal since 9/15, the day we started Tranxene. We are 12 days seizure free (grand mals) and counting! However, our daycare provider has been telling me about some "weird things" she is seeing that I got to witness first hand today. Jenelle tends to roll her eyes up into her head, is unresponsive and her eyelids flutter for a few seconds (almost as if she were downloading a program in her brain.) Daycare thinks it is a seizure, and unfortunately after witnessing it myself this morning, I must agree. I put in an email to UCLA today and will update you when I hear something more. Because they are not lengthy, I did not feel it was urgent enough to warrant a call to the Neuro.

So, that is about it. The IEP still is not finalized as we still have a few things to work out. Thank you for the continued prayers - I'll keep you posted!