So Mr. Avery is STILL struggling horribly with pain. I spoke with the team again and pleaded with them that I just cannot take it anymore. This is NOT quality of life. Poor cutiepie will have these bouts throughout the day that he just starts screaming like someone has just bit him with tears streaming down him face. OMG, talk about gut wrenching. Then after 3pm all hell breaks loose. They will be upping his baclofen yet again. I just don't think that it is working but I agreed to try it over the weekend and if no difference has been made then I wanted them to put him back on the valium or IV meds. It is just such a tough battle b/c you feel like you are fighting people to give your kid drugs so you have to tow the line. However, I am not the only one who sees him like this and there are alot of reality checks. Just want this little guy to feel better. It is just killing me.
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Okay that was sooo depressing. I am such an upbeat person and I hate having to talk about depressing things but "it is what it is" right!!!!

Rick and I are pretty excited about the weekend. We are staying at a really nice place and it will just be nice to sleep late, although Rick's late is 10am and my late is 7am. Doesn't matter, it will just be nice as it is a rare occasion that him and I get to get away together b/c someone always has to be with the boys.



Wishing everyone a HAPPY EASTER AND PASSOVER!!!!!!!!!