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Sunday, July 31, 2011

Update

Yea I know I haven't updated in a while.  I have either been too busy or too tired.  

Sami is doing well.  Tomorrow it will be 2 weeks post-op.  She is off pain meds already and is back to her normal self:)  She still gets tired from time to time though.  We are working on getting ready for school to start in THREE WEEKS:)  (can you tell I am excited??)  She will have some restrictions: no PE for the entire school year; her classroom is on the 2nd floor (up to flights of steep stairs) so the doctor wants her to use the elevator for a few months just to be safe.  One fall or a hard bump could dislodge or break one of her rods.  And she can't carry a backpack on her back, school doesn't normally allow rolling backpacks so we have a meeting the week before school to discuss these things.

Joey is doing about the same.  He was doing good on eating by mouth up until the past few days and has started gagging a lot, even when he isn't eating.  So its back to being feed via his g-tube.  His skin is doing ok.  A LOT of scabs/dead skin, WAY MORE than we remember Sami ever having.  We could easily spend a hour PER DAY removing it all.   He was getting a lot of blister and I thought it was the bandages but we recently discovered that the ointment (no matter what we use) it causing all the blisters:(  So we just use dry bandages when we can and soak them off really well before removing them. 

Summer is excited for school to start.  We got her backpack today:)

Grace WISHES she was going to school too but I think she'll enjoy the peace and quiet (I know I will) and not having to share with Summer all the time!

Still no answers on Joe's swollen leg (now legs)  he has another vascular ultra sound and they couldn't find anything.  He is suppose to see the Dr. this week to discuss the results. 

I stopped all my meds at the beginning of July to basically see what would happen regarding my supposed Lupus.  My blood work was mostly normal (the ANA was positive again but the lab didn't run the ENTIRE test like they should have) and I was feeling REALLY good till about a week ago and it all went down hill.  So much pain....:(  So I am back on one of the meds and may have to go back on the steroids if things don't improve soon.  I don't want too but its hard to take care of the kids, especially Joey, so I guess I'll do what I have to for them. 

That is about it for now.

Here are some pictures from the past few weeks.

 he can hold his head up most of the time



 being silly with Joey (who looks less than thrilled as you can tell)


 future baseball player??


 Sami's back BEFORE surgery








and here is her back AFTER surgery!
(amazing, i know)



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