Its been a rough week for the boys but we have miraculously managed to stay home with Avery so far, YAY!!

Isaiah started another migrane on Monday which he just started to recover from. It is amazing with him because he can look like death warned over (super lethargic and drooling out with temps and leaking stoma and retching) to back to kicking everything in his path and going after Avery's tubes. I am a little disappointed though b/c he increased his phenobarb. last week (he is a month into it) and he has had 2 cycles since starting it. It almost seems like it is making things worse. It is just so frustrating b/c Isaiah has been going at this for almost 4yrs. now and it is really awful to see him like this. His cycles seem more frequent and lasting longer. UGH :(

Out of nowhere, Avery started with a cold which formulated into wheezing (not a norm for him) and of course more junkiness. He has been getting suctioned alot and had increased O2 requirements. Normally, this would have landed us in the hospital. But not this time, YAY!!!! He still has a low grade fever and sounds crappy but he is holding his own. I am hoping that the IVIG infusion has started to kick in and he is better able to fight it. That would be great news b/c we know we are on the right track.

I was supposed to have yet another drs. appt. but I decided to cancel as I am sooo sick of going to these appts. I have had one for the last 3 wks and have another few wks. of more. So that gives me no days off. Instead I cancelled and decided to hang out with my friend Christine by the pool. All are welcome. We are serving wine and cosmos. Hehe