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Friday, August 5, 2011

Almost 5 months old

Joey will be 5 months on Monday!!!  Hard to believe sometimes.  I figured i'd do  his 5 month post now since he is napping (a rare event) and I have a few moments!

first here is a picture:


weight: 13 pounds 12 oz 

length: 24"

He likes to play with his stuffed monkey and will grab into him at times.  But that is about the only gabbing he will do to things (other than someones finger)

He likes to laugh and smile a lot more. 

Unfortunately his skin has gotten worse, along with his pain.  Bath got so bad we had to cut back to 2-3 baths a week (vs every day)  we are still changing his bandages every day but not a full bath.   The upside, his pain seems a little better; the down side, he had more and more build up of dead skin/scabs.    So we are trying to find a balance between the two.  Is hard to remove dead skin from a wiggly baby!  His feet are worse again and last night we discovered his toes are started to fuse to the bottom of his foot due to the dead skin build up.  It's rare but does happen in about 5% of those with EB simplex dowling meara.  I know of one other person with EBS-DM that had this same problem.  We tried to remove as much skin as we could but it caused him so much pain to do so:(  His skin is completely different than Sami's and I worry it will be along time before his skin looks as good as Sami's. 

Speaking of Sami, she is doing better.  She no longer has pain in her back, just her leg.  She is excited to find out who her teacher will be and get back to school to see her friends!

After months of swelling in his legs Joe FINALLY has a diagnoses:  mild vascular ventricular disease. Swelling causes the veins to stretch out and the valves not to close properly causing blood to back flow into the legs.  Only treatment is more walking, wearing compression stocking and cut back on the salt in-take.   So nothing too serious at this point.

Here are some more pictures of our little monkey boy!

1 comment:

  1. Hi Sara: Thank you so much for taking the time to update. I know how busy you are. I can't believe that Joey is 5 months old already. How time flies when you are having fun, right Sara???
    Happy that Sami is still doing great and relieved that your husband doesn't have anything too serious. Will continue to keep your family is my prayers. Hang in there sweet family. Love and Peace Leah's Nana