I know it's been a long while, as my mother in law keeps reminding me :)

Since I last blogged we couldn't figure out why Avery was so sedated.  Well the mystery has been solved!!! Unfortunately, the pharmacy gave him baclofen instead of clonodine on top of the baclofen he was already getting.  The baclofen is a muscle relaxer.  So it was a bit too relaxed.  It was definitely scary but I'm glad we figured it out and he is ok.  This boy is just so unbelievably resilient.  Since then he has been doing ok.  At this point he is supposed to be going to school 3 days a week but between drs appts and sickness he may only still make 2 days.  I'm just thrilled that he is even at the point of going to school this much b/c he loves it so much.

Isaiah continues to struggle with his cycles, he had a pretty bad one on Sunday :( but other than that he is great.  He is getting so strong which is amazing considering his diagnosis.  Janessa is doing her thing.  She is just so busy between girls scouts, school play and student council that it seems like we hardly see her.  Also she is already at the age of not liking her parents and wanting to be with her friends all the time :( so sad.

I have decided to start working 4 days a week b/c I was basically doing it but without the benefits. Although it's a big commitment given my crazy life, I think it is worth it.  I always figure out a way to work it out.  Thankfully I'm still seeing my counselor :)

Unfortunately we did not last very long at home :(. Maybe Avery was so depressed over the Patriots loss that he decided he needed to check back into Children's, lol. On Monday afternoon he fell asleep unusually early on his beanbag and was having some apnea spells. We thought he was just tired but it continued into the next day. He went to school but I had to pick him up bc he was totally knocked out and pale. It was very very concerning so I brought him to the ER in hopes that it was something "simple" like he needed a blood transfusion. Well silly me should know that "simple" and Avery are never used together. The other thought was that since they increased his Valium (while he was in 2weeks ago) it could cause the same symptoms. That would have been a good explanation but not likely since it was a small increase and he has been on it for yrs. In fact we were all hoping that was the cause bc it was fixable by just going back to his original dose. But of course, things were not that easy to solve :(. He continued to be lethargic with apnea and low heartrates while he was inpatient. There was some questions of further progression of his disease and some debates of whether an MRI was necessary. I didn't think having an MRI would change our treatment for Avery and the team agreed. By the third day, Avery was back to his happy cute self so brain damage didn't seem likely either. So we basically went home on Friday with no answers. I thought it was a fluke thing but he had another episode yesterday. At this point I have no idea what is going on. We are just taking things day by day and hoping it goes away. Seeing him look so so good on Friday gives you so much hope but it's quickly taken away when you see his lows. This boy is such a tough cookie but he really deserves a break.

Home at last

After 11 days inpatient battling fevers, low platelets, fluid overload and respiratory issues Avery came home on Sat. There is still no conclusions as to why he got so sick except for the default "viral". Avery is a trooper as always and tough as nails. He should be going back to school tomorrow. I'm just relieved to have him back home bc balancing work, hospital and home is getting real old and exhausting. Although I know what the flip side is so I guess I will just deal with it. I'm just glad I have my counselor to help keep me grounded. Don't know what I would do without him.