Road Trip!!!

September 26, 2010

Jack had a big week last week.  And a LOUD week!  He's either teething, or extremely unhappy about the meals and lodging he's been receiving.  Unfortunately, his crying and fussing has been on the uptick, but I keep reminding myself that at least he's giving his lungs a workout.

On Monday, we drove to Columbus to visit with Grandpa, Aunt Katie and cousins Lizzie and Frankie.  Lizzie has begun soccer, and practice was a hoot!  Imagine trying to get thirteen 3-year-olds to follow directions.  It was hilarious!  Below is a picture of Jack with his cousins.  They all had a big time!  There is also a picture of Jack with Grandpa at the soccer field.

Of course, I feel safe travelling to Columbus because I found out that The Sibley Heart Center has an office there!!  I am reluctant to go more than an hour or so from Atlanta in case Jack has any issues, but Jack's cardiologist gave me the OK, and a list of the doctors in the Columbus office in case I need them.  This is great news for the family!


On Wednesday afternoon, at 4:30pm, I got a call from the physical development offices.  I vaguely remember being told, while Jack was in the NICU, that he would be called for an evaluation of his development, due to his prematurity and cardiac issues.  So this nurse told me that she had trouble finding my number, but Jack had an appointment on Thursday afternoon.  Fortunately, I was able to go up to Emory, because they didn't have another appointment available for months. 

During his evaluation, the physical therapist told me that premature babies often had physical and mental developmental disabilities, and that if we could monitor his progress from an early stage, that there were certain interventions we could employ to help them have the least effect on Jack in the long run.  Her first check was of Jack's head.  Many babies who are intubated aren't rotated in their beds frequently enough, and so they have flat spots, which actually can develop into serious defects.  Fortunately, Jack's head was "beautiful" and I confirmed that the NICU nurses at Egleston, as well as the CICU and Cardiac step down nurses were extremely diligent in turning Jack.  The only thing was that one ear is slightly more forward than the other, and people, I look at this kid non-stop, and I had never noticed it.  She said it was very mild and only cosmetic, so I was relieved!

Then she did some physical therapy play with Jack to see how his body and mind were developing.  Jack got a 14 out of 15 on the evaluation!  And the only thing that she noted was that Jack is failing to use his right hand enough, and that it is still clenched in a fist more than the left hand.  She gave me several exercises to add to the PT that we do everyday, and predicted that he would improve with some effort on our parts to make sure that the things he wants to grab are on his right side, requiring him to use that right hand.

Below is a picture of Jack in the PT office.  The therapist used that red apple toy to test his ability to focus on, and track a moving object, and he did great.  I guess it's lucky that when I do that exercise with him, I use a red heart, so he had already done this test at home!

Tomorrow morning, Jack has an appointment with the cardiologist.  I am a little nervous about this one, since at the last appointment, Jack's doctor told me that she was sending his case to the "Cath Conference" for the doctors to look at his data and decide when he needed another surgery.  I know it's coming, but I don't have to like it.

Hope you're all well!

Love
Maggie

PS - I've gotten a few donations for the fundraiser mentioned in the last post, and a few emails from people wanting Jack's mailing address.  THANKS TO ALL WHO ARE SUPPORTING JACK AND SIBLEY!