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Wednesday, June 8, 2011

3 months old!


Weight: 10 lbs 1 oz as pictured (w/o bandages, clothes and a diaper he is 9 lbs 9oz)

Length: 22 inches

Sleeping habits: still only 2-3 hr at a time if we are lucky

Eating Habits: 3 oz every 2.5-3 hrs round the clock by g-tube.

Likes: Sami, being held, riding in the car

Dislikes: getting into the car seat, baths, loud noises

Medical stuff:

He is still having a lot of GI issues so we went a saw a GI doctor.  He stared Joey on new medication and we are going to start adding rice cereal to his feeds and see if anything changes.   If not, the Joey will need more tests and possible surgery:( 

Still no more breathing issues so he is allowed to have small amounts of formula each day.  Sometime he does ok, other days he struggles to suck and or gags and chokes a lot:(    We saw the ENT yesterday and he doesn't feel the need to see Joey "just to check in" unless something comes up.  So that is good.

Developmentally, he is behind.  He just started smiling within the past couple of weeks but doesn't do it regularly.  He also doesn't make 'cooing' sounds.    The therapist thinks its because he doesn't use his mouth muscles to drink on regular bases.  So he get OT starting tomorrow.  He only gets 20 therapy visits per year and I think he needs feeding therapy more so we'll see how long it lasts.

His skin varies from day to day.  Like many with EBS-DM, the bandages actually cause more blisters but his skin is still so fragile and he needs more than clothing to protect the skin.  We started something different with how we wrap his arms last night so hopefully we'll see improvement.  

He is also teething already and has many fussy days and nights.  

That's about it for Joey.  I am very happy we made it this far and overall he is doing well:)

Here are a couple of more pictures of him.  


  1. He has come such a long way! Thanks for sharing these delightful pics of him.

  2. Oh, he is already so big Little man - 3 months old!!! Congratulations and best wishes! May God bless him more and more!!! Bacione!
    Marina Sh (Verona, Italy)

  3. Hi Sara: Thank you for the Joey update. He sure is a cutie pie. Love the pictures. He looks like he is doing very well. Will keep Joey and you in my prayers. Keep the Faith. Love and Peace Leah's Nana