Saturday, July 7, 2012

Xander's Half Birthday & Medical Update

Xander turned 6 months old on June 29th and we celebrated his half birthday just like we do with Gabriella. As tradition calls for, he got to have his first donut!

Here he is playing with the chocolate frosting on the donut right after daddy handed it to him.

A video of him eating (or trying to absorb it)

And all done, right before we headed to the bath!

He had his 6 month check-up on Friday, July 6th. 
He weighs 20 pounds 11.5 ounces (90th%), his head is 90th% and he is 27 inches tall (75th%)
He's ahead of the curve physically (already up on all fours and trying to crawl, trying to pull himself up on things and working on feeding himself). But is not "talking" yet. He growls and squeals (quite shrilly) but no words formed yet. His doctor isn't too worried about that. 

His tracheomalacia seems to be doing better as long as he stays healthy (no colds or coughs) and doesn't try to breathe in any bath water again. He still wheezes (on the inhale and exhale now) but only when he is sleeping or falling asleep and not every time he nurses anymore. 

He loves the fact that he can sit up by himself now and he likes to play in the tub and bat at the water. We take at least two baths a day, usually after he eats. He likes to suck on his thumb in between bites so it manages to get all over him quite quickly. 

In this picture you can see a small ridge on his forehead. It starts on his forehead and goes up into his hair and about two inches into his hairline. I noticed it a couple weeks ago and thought it was from him bonking his head on the floor from falling over while sitting up. But then it never went away so I pointed it out to his doctor at his check-up. 

She felt around his head and was concerned that he may have craniosynostosis, a birth defect that causes the bones in his head to fuse together prematurely and cause a ridge-line. (see Mayo Clinic for more info)

So, now we have to go to Portland in the next couple weeks (I will be getting a call with our appointment next week) to get it checked by a neurosurgeon to see if he needs surgery to fix it. If he does need surgery it would be because his head will be unable to grow properly which will in turn cause a misshapen head, face and brain (which will affect his development, etc.)

I have been getting overwhelmed easily lately and we had thought we were out of the woods with him on medical issues since his tracheomalacia and laryngomalacia weren't getting any worse. When I heard about what his head problem was I had a meltdown. Praise God for a supportive hubby who called my mom (after I called him crying) and she had me come out to her house. She watched both kids for me so I could go in the other room and take a nap by myself and try to relax. 

After having a few days to process this and look into treatment and how surgery would be done if needed (pulling back his skin and un-fusing the bones and correcting any bone problems underlying. Its quite graphic and burly to look at pictures) I felt better. I like to be informed about things. Knowing what we are up against makes me feel calmer about things. 

We are believing that God has what is best for Xander in mind. We know that he is a miracle baby, born from a woman who was physically diagnosed as infertile, and born during a time in our lives that was full of turmoil. He had had numerous prophecies about his HUGE future and the MEGA impact he will have on the world for Jesus. He is our treasure, and we cannot imagine loving him more. But at the same time we know that God loves him even more than we ever could. 

So we are praying and believing that his skull bones will be healed by God and that no surgery would be needed. That his little head would always be as perfect as he is! Thank you for joining us in believing this miracle!

1 comment:

  1. Thanks for sharing. We will be praying for Xander and you. God bless.