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Thursday, August 26, 2010

Mikey Update 8/26/10

Mikey is doing well with physical and occupational therapy.  He's still reluctant to bear weight with his upper body, but he's working on pushing up into a sit, pushing up onto hands and knees, standing and catching himself when he falls.  These are all incredible feats considering his history.  We did find one tool that seemed to make a big difference: Kinesio tape.  It's special tape that gives the muscles a constant cue, so when the body needs the muscle to work, it's already cued to flex.

Feeding therapy is not helpful, though Mikey is taking strides thanks to our work at home.  All the therapist does is have Mikey play with dish-soap bubbles and toys.  She won't even acknowledge my concerns about how his tongue moves.  We've been working on giving him different foods at home.  So far he loves anything raspberry, he gets very excited about applesauce, and he can't get enough melted gelato.  He has good taste!  He's actually opening his mouth for the spoon now, which is a HUGE step.  He also eats Gerber puffs with a lot of enthusiastic encouragement from us.  We're not pushing him, but we're getting more aggressive.  Next stop: yogurt.

Mikey is finally eating enough milk and formula.  The gastroenterologist ordered an endoscopy to see if there was a physical reason for his inability to eat enough.  (He was throwing up if he ate anywhere near a normal amount for his age.)  My concern was his inability to digest formula.  It was just sitting in his gut.  The doctor made a comment that we should assume he'd have this problem with ALL formula, not just the one he's on.  When I told my wonderful lactation consultant his comment, a light bulb went on for her, and she realized Mikey must lack the enzymes necessary to digest formula.  Breastmilk contains its own digestive enzymes, so even if he lacked them, he wouldn't need them.  I remembered that Mikey ate more when I was alternating breastmilk and formula, and we realized we had our answer: the enzymes in the breastmilk were helping him digest the formula.  So, I now make sure I alternate breastmilk and formula, and he's eating as he should be.

Unfortunately, he's still not gaining weight like he should.  We had his routine cardiologist appointment today, and I brought up this concern.  The doctor had us do an ultrasound to check on the status of his heart and its hole.  His heart does not appear to be enlarged, though he's not convinced it's not going that direction.  The hole has not started to close.  Even though there are cells building up near the hole, they are not migrating into the hole.  Additionally, the sonographer today measured one side of the hole bigger than anyone has in the past.  No, the holes don't get bigger, but past sonographers always knew the size the hole was supposed to be before they measured it, so there was some bias involved.  This new information pushes the hole size off the fence and into the medium category.  Since the hole isn't closing, and Mikey may be symptomatic (poor weight gain and loud mouth breathing, both of which have been attributed to other things up until now), the cardiologist is recommending surgery before the end of the year.

This recommendation does not mean Mikey will for sure have the surgery, which is open-heart surgery.  The entire team needs to agree on the need and timing of the surgery.  The cardiologist feels in his gut that this surgery is necessary and that his team will agree.  He said even if the weight and breathing are not symptoms, Mikey should improve with this repair just because his heart will work better.  Before we decide on anything, though, we have some business to take care of.  We need to see a geneticist to rule out chromosomal abnormalities, one of which - chromosome 22 deficit or DiGeorge syndrome - Mike suspected based on his research, and one that I spied - chromosome 17 deficit or Smith-Magenis syndrome - on a fundraising flier in the cardiologist's office.  We also have to have a chest x-ray to measure Mikey's heart to determine if it's enlarged.  We meet with the surgeon in about a month.

Mikey is still a happy little boy.  He is making great progress with his DOC Band (cranial helmet) and should get it off before his birthday.  We're so thankful he is so happy, laughing and smiling all the time.  That helps us know we're making the right decisions.

1 comment:

  1. I am so glad that he is happy even with all he is going through! That has to give you a measure of peace!! I am praying for you!!