Monday, March 19, 2012


I'm so sorry that I've been a bit MIA lately, I have no excuse except for I've just been so unbelievably tired that at the end of the day I am just ready to crash!  Let me try and catch up the past couple of weeks....

After we left the hospital Baby Eddie's back was still pretty swollen but about a week later it finally looked amazing! I mean totally flat! I couldn't believe it we hadn't seen it like that EVER! Not even right after surgery. His fontanel looks amazing too, completely flat! I'm so proud of my little guy.

Friday we went to Shriner's Hospital for Children to meet with the doctors of the SB Clinic. We met with a TON of doctors from PT to Nutritionist to Ortho and more. It was about 13 people! It was great though, to meet with so many people and get such great info! Also, in the NICU his clubbed foot was pretty bad and they were pretty sure he'd need casts for his legs. When we went to Shriner's they've decided that at the moment he won't need any casts or anything other than PT. YAY!! His legs look so much better. They are concerned about the tendon in his ankle on the right foot that controls the muscle that flexes. It is very tight and his calve muscle (which helps the foot point) is very weak. The left foot is similar but not as bad and his left calve seems stronger. This causes him to not be able point his feet so they are always flexed.  The solution would be to cut that tendon in his ankle.  The problem with that would be that his feet would ultimately be floppy and he would need little plastic braces on his feet for his shoes in order to walk.  Big deal considering they didn't think he'd be able to walk.

Although our plan is to continue to work with a physical therapist that will come to the house and work those muscles and tendons and hope that his feet and legs continue to get better. I know they are doctors and know what they're talking about but 3 weeks ago they thought he couldn't feel his foot, and he had a clubbed for that they were talking about casts for.  Look at him now only 3 weeks later! I figure PT can't hurt. 

We've set up to have early intervention to come to the house and work with him weekly or every other week to track and help with his development.  Just to help us stay on track reaching his milestones.

Today he made his first "sound" on his own.  He has made sounds before but this one was on purpose.  Bella kept saying "Hi baby Eddie, Hi!" and he kept trying to say hi back! I know that sounds crazy but I swear he did!! It sounded more like a "Haeiw" but he was trying to say hi! LOL I know you don't believe me but I will get it on camera and you will believe! No one believed me when Bella started talking at 3.5 months but she did!

I have also realized today how much he looks like Bella when she was a baby. They're like twins!

I've posted some before and after pics of his back and some pics of where the shunt is.  They can seem a little graphic but they're his battle wounds and I'm proud of him and them!

 Before shunt
 After shunt


  1. wow that is amazing my thoughts are with you guys god gave u a prince. Enjoy him with his lucky horse shoe. my brother also has a shunt and it helps.

  2. Look at that gorgeous little head of hair. Keep those good thoughts obviously little Eddie is!

    Ann Miville

  3. Go Eddie!! You guys couldn't be in better hands than Shriners. They truly have a holistic approach to treatment and are the best! Nice to see Eddie's got plenty to say to his big sister!! They'll be fighting over the remote control before you know it!
    Keep up the postings when you can. Stay strong and remember to take a moment or two for yourself now and then. Even mommies need rest once in awhile.

  4. Shriner's are the best!