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Monday, November 21, 2011

Joey- 8 months old and update on Sami's back

I am a little behind on the updates but Joey turned 8 months old a couple of weeks ago.  Unfortunately he has been really sick this month so I haven't had time to take his 8 months old pictures or post an update.   It started off with a double ear infections and an infection in both eyes and then it turned into RSV or some type of upper respiratory infection.  His skin was looking really good before he got sick, then looked even better while on the antibiotics and steroids but now he is a mess.  Not sure if its because of the weather- one day its cooler in the lower 70's and the next its in the mid 80's with lots of humidity.  But his entire torso, neck and chin are blistered, open raw skin mess. 

Here is one picture I managed to get of him the other day


Weight: about 16-17 pounds

Length: not sure about that right now, haven't measured him recently.  

Wears: size 12 month clothing

Drinks: all his bottles by mouth, we just use his g-tube to feed him baby food.  He will eat yogurt off a spoon but he will only eat if he feeds himself and that takes forever to eat a decent amount so we just push it through his tube while he feeds himself! 

He can hold is bottle all by himself and sit up on his own too.  Still no rolling over or crawling but that is ok, less damage to his skin.

Sleeping:  some nights he will sleep all night.  But he mostly goes to bed around 11pm and sleeping till 8am getting up just once or twice to eat.  And he takes 2-3 naps a day and they last anywhere from 30 minutes to 3 hours.  

And now onto Sami....

She had her 4 month post-op check up with the doctor today.  When she had her surgery they placed special growing rods in her back that would grow with her so she wouldn't need surgery every 6 months to lengthen them.  Well so they only one rod has moved since they were placed causing her curve to get slightly worse; which isn't good:(  We go back in 2 months and if there is no change she will have to have surgery to lengthen them manually and then again every 6 months there after.  She isn't happy about it one bit.  Hopefully things will look better on the x-ray in  January.  We also found out that even though the insurance company approved the surgery in the first place, once they got the bill, they started looking at every single thing charge and decided some things weren't covered and they aren't paying for somethings.  We are appealing but are very worried as the amount owed is more than we could ever pay off in our lifetime:(

Hope everyone has a happy Thanksgiving!


  1. praying for your family and that the insurance will cover everything!
    Happy Thanksgiving to you too, xx

  2. Love the picture. Joey is sooo cute. Hoping and praying that all goes well for Sam. You and your beautiful family are always in my prayers. Happy Thanksgiving sweet family. Love and Peace Leah and Tabby's Nana