Our Boy

Our little man is officially 6 weeks old (2 weeks "adjusted"). He has gained a whole POUND in the last 8 days and is weighing in at 9 lbs 3.3 ozs. He is breastfeeding exclusively (thanks to my amazing lactation consultant) and eats about 4 ozs at a time (in the NICU we were lucky to get 2 in him). He is THRIVING!!! Yipee! Praise God.

That being said, here is the latest and greatest on the little man and his little quirks:

There is a group that is made up of all kinds of therapists called Tri Counties. Good 'ol California provides any therapy a baby that is deemed "high risk" needs for the first 3 years. We had 3 therapists come in and see him Monday to assess what they think he may need. From what they saw, he is doing absolutely PERFECT. The way he moves, flexes, holds his head up, etc. was all perfect. The fact that is is breast feeding and gaining weight is great!

Now from head to toe what we have learned:

BECKWITH
The geneticist called and told us the results of the test for Beckwith Weidemann came in and were negative. This is the good and the bad. Good because we can rule out childhood cancer and all the other associated risk of that syndrome. Bad because the doc is still convinced that with the collection of quirks Joshua has that there is an actual underlying syndrome. Basically, there are several syndromes, each having 5+ characteristics each... Joshua may have a couple of those characteristics causing the doc to think he has one of those syndromes. He doesn't feel strongly enough about ANY of these other syndromes to test specifically for any of them. SOOO... we are doing a test called a micro array. It is a super detailed evalutation of each of his chromosomes. It will lead us in the right direction, hopefully. I asked the guy why we need an actual name of something?? What if each of these is just a fluke deal (as they could be) and not necessarily a syndrome?? He said it could be, but he would keep "digging" if it was his child, so we are digging. When I asked the geneticist why he thought some of the syndromes were likely, he said it was Joshua's facial struture/features. Since then, I have asked the therapist group (who has seen tons and tons of high risk and special needs babies and kids) and my lactation consultant (who also has seen all kinds of babies) and each said that he looks totally fine,aside from his little tongue(ears are lined correctly with eyes, bone structure is good, etc.) I seriously think the stinkin' genetics guy is just looking too hard for something to be wrong. The micro array takes 4-6 weeks to come back. We see the geneticist again in August.

Agenesis of Corpus Callosum: the therapists said that they have seen it and it is something all of us could have and not even know. The nurse that works with the docs @ LA Children's Hospital said they see babies w/o it a lot and it doesn't necessarily mean anything. So, we are praying for that to be our experience also.

Tongue: We have been doing exercises to help him learn to hold his tongue in and he is doing much better. We did learn something new, just today though. His upper lip is kind of flat and my lactation consultant said it is because he has a labial frenulum. Like a tongue tie, but on his lip. I was happy to hear the reason behind it because I thought his jaw line was weird or something, but it's not and if we want to get the frenulum clipped, we can.

Heart: no new news there. Follow-up in November.

Umbilical hernia: general surgeon said that 95% of them close up on their own.

Inguinal Hernia: surgeon said that since Mike, his brothers and my brother all had them, Joshua was bound to have it as they run in families. He is having surgery July 28 to fix it.

Hypospadias: we learned that boys with a hernia sometimes also have a hypospadias. To me that means that the hypospadias isn't necessarily related to a syndrome, but could be related to the hernias which are related to family history and nothing more. This will get fixed when Joshua is 6-9 months old.

That's the scoop for now. All in all, a good report. God is so good and is DEFINITELY WORKING!! It is so amazing to watch. We thank God for our little miracle everyday.