Update on the past week, WARNING LONG POST

The pictures below are of Avery's party on Sunday. Isaiah was not feeling good during the party, poor thing. We spent most of the day on Sat. at opening day of softball which was fun. Janessa had a blast and she got a nice RBI, really cute to watch. Also the group of women that are surrounding Avery is the Early Intervention team that we will so dearly miss. Since Avery is a three yr. old he is now in the school system, UGH :( totally sucks, tell you more about that in a minute. But we will really miss the group, they were so awesome with Avery.
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We ended up getting discharged from the hospital on Friday afteroon which was great. After Avery's whole episode which sent us to ICP he was fine respiratory wise but did not urinate for over 20 hrs. which was concerning. He finally did after IV fluids. Just weird b/c he was on his TPN and gets plenty of fluids in that. Another development was the he is close to developing gallstones. Yup. Never thought I would be worrying about that with my 3 yr. old but it is due to the fat in his TPN. So he is on a med to hopefully prevent them from forming.

I guess based on how he did not last on the regular floor, something we have not done for over a yr. and I see why now. He will just be going to ICP from now on. They know him so well there. It was a bit of a running joke as to how on ended up on the regular floor. Here is a laugh for ya. While he was on the floor and yes I was in the room sleeping with him. He was crying at 5am (very usual for him) his nurse called the nurse on ICP to ask what she should do with Avery b/c she already had given him pain meds. Crazy. Just another sign that Avery needs to be where people know him best. It almost becomes like your second family, sadly enough.

Everyone was so pleased with how good him did look b/c he gained about 2lbs. Woooohooo. Also shows how well cared for he is which is always good to hear. Makes all the hard work worth it when you see that he looks good given the prognosis of his disease.

Also, I, yes me, may have found the mutuation to their disease. Not sure if I posted before on this but I found an article with fit my boys to a tee and sent it to my neuro for which absolutely nothing was done. But I saw genetics on Friday and mentioned it and they said it could absolutely fit them. So they ordered the bloodwork and we should know by 3 mos. Now this will not help the boys in any way as we just basically treat the symptoms but it does help Janessa's future so she does not have to go through the same thing. Fingers crossed.

Okay the school thing (told you this would be long :) We got Avery's plan proposed by the school for home services. Physical therapy 2x per month, speech 2x per month , OT I think 1x per month, deaf educator 1x per month and educator 2x per week. Yup, as I am listening with this with my eyes bulging out of my head. Why bother even sending anybody to my house b/c that is a waste of time. What happen to NO CHILD BEING LEFT BEHIND. So of course this is NOT going to ride with us. Unbelieveable and yet so exhausting that everything is such a fight.

Hopefully you have lasted this long reading my update. Isaiah is hanging in there but we really need to get a good plan in place for him. Poor kid keeps taking a back seat to Avery who is always in the hospital. I keep having to cancel appts. for him b/c Mr. Avery is in the hospital. I have alot of up and coming appts for Zay and hope to get him feeling better all the time.

I guess that is it for now. Thanks for checking up on us.