Things have been fairly stable around here (Well in our crazy normal way) Unfortunately, I think Isaiah is suffering from his cluster migranes though. He has been retching daily since tues. Poor kid. It is really time to see the GI dr. I hate to see him like this. On Frid. night my nurse said he was rolling around just crying his eyes out. Isaiah NEVER cries so if he does it is very alarming and also so heartbreaking. I cannot imagine what he feels like. I am also thinking that down the road we will have to get a port (which is a central line for him) for home fluids b/c everytime he retching we have to dilute his formula and the kid is already so skinny as it is. It is not dire right now but I can see us heading in that directions if things continue for him like this.

Avery has had alot of secretions in the past few days. He has been able to cough alot but has needed alot of suctioning as well. On friday night my nurse had trouble keeping up is oxygen levels but she has become such an expert at it that by the time she is done he is sleeping restfully on the bipap. It is so good that we are able to maintain him at home b/c we would seriously live in the hospital with him. He has also been suffering terribly from night spasms which usually occur at 2-3 am causing his great pain about every 20 mins. Thankfully my night nurses are starting this week.

We also had a visit from Pallative Care which is different from the hospital one. They are from the Dept. Of Public Health. It will be a nice added service b/c the nurses and drs. make house calls and will keep a close eye on us. They also have an expressive play therapist for Janessa. Volunteers to help me do laundry and cleaning. YAY.... and a Social Worker for Rick and I. So it sounds like we are all set up.

Basketball is starting in about 6 weeks which is exciting but I am nervous about our schedules at the same time. I just pray that we can keep Avery home as much as possible this winter. I would hope with how well he is cared for at home that we may see much fewer hospitalizations. I am just so done with being there at this point and so is the whole family. But I will think positive thoughts and just look at the day I am in (which is hard to do for me) but it sounds good anyway.