"Normalcy"

So that is the reason why I don't blog as much.  I feel like we are actually living a somewhat normal life.  Both Rick and I go to work and the kids go to school.  No crazy hospital runs and millions of drs. appts.  Although I'm always waiting for the other shoe to drop such as up & coming Holidays b/c Avery typically likes to spend them inpatient.  Or maybe it's b/c he is coming up on a 3 month stretch on June 15th.  It's kinda crazy that we make plans these days and are actually able to keep them.  I cannot tell you how many times in the last 10 yrs I have had to cancel b/c the kids were inpatient (and that includes Janessa).  All this can change on a dime but I have to say that I am getting quite used to the normalcy. 

So in the spirit of normalcy we just had Avery's IEP meeting.  For the past 2 yrs we have been discussing the possibility of Avery going to school physically. Currently he is homeschooled and it works well for him but he doesn't see his peers. And after everything that happened last summer I thought there was no way my boy would go to school with kids on the school bus.  Well the time has come!!!!.  My boy is the best he has ever been (sure he has some rough days but in the scheme of things he is great) so there is no time like the present, right!!!  It was decided that Mr. Avery will go to school 2 days a wk just for 2 hrs.  I know that is barely nothing but we have to start very slow with him.  Remember he does not have much of an immune system and what he has is a result of his weekly IVIG treatments.  He is not used to being around kids at all.  This is a scary thing for us all (including our pediatrician).  He even posed the question of "Are we doing this for Avery or for us" .  I thought this was a great question and this is why I think he is so good for us.  Truth be told, a year ago it was for "us" but now as I see Avery's personality flourishing as you saw in the Globe article.  How can I not send him to school to interact with the kids.  I'm sure the beginning will be rough as his immune system figures out things but in the end I think it will be great for him.  Who knows, if he does well then we will increase his school time.

 I really hope that it becomes the trend of our new life.  But then again, it is Mitochondrial disease.  Just when you think you are doing well it comes back to bite you.

But for now I am gonna continue on the positive path b/c it's working.  Avery has a couple appts. at Children's on Friday (he has not been there since his last inpatient stay) and while I would love to visit people on 11 south (our 2nd home), I probably won't b/c the last time I did after a 3mos hiatus we were inpatient the following wk. Hopefully it is a quick tube change and a quick hi to the Palliative Care team to tell them how awesome he is doing :)