Thursday, November 12, 2009

Back in business... sorta

Let's see... it has been about 7 months since my last post. I started this blog as a way to keep our friends and family back in the States updated on the various adventures we are brave enough to embrace while living in Japan. But let's be honest, I basically talk about NOAH! And who can blame me, he is a pretty charming subject, offering plenty of subject material. But about 7 months ago we had a bit of a scare with the subject of our affection; there was some concern that Noah had a condition called craniosynostosis.

Exactly... what?!

The nutshell explanation of this condition is this: the skull is comprised of several different plates with open sutures between each one that allow the brain and skull to grow. Craniosynostosis is the premature fusion of one or more of the sutures. Depending on what suture is affected determines the type of cranio that you have. This was not something that was new to us; my nephew Jackman was born with sagittal craniosynostosis and underwent major skull reconstructive surgery to correct the problem.

Exactly... what?!

Unfortunately for some cases the only solution is a major surgery. The brain needs room to grow as it is meant to; not forced to grow in the area of least resistance causing an abnormal head shape, not to mention the increased risk of intracranial pressure. Jackman Michael Ellington underwent total cranial vault reconstructive surgery in February of 2008. Now, almost 2 years later, he is doing beyond fabulous! Anyone who knows Jack can attest to the fact that there is no stopping this fireball of energy, excitement and PERSONALITY! The point I am trying to get to is that although it is a scary thing to hear your child might have this condition, I knew first hand that IF Noah did indeed have this that he would be just fine... look at perfect Jack! Knowing that and living that soon became two different realities to me...

Cranio soon overwhelmed my days. When I was not taking care of/playing with Noah, I was worrying about/obsessing over his health.

Every. Little. Thing.

I was obsessed with taking pictures of Noah from different angles to try and capture the shape of his head. I would stay up for hours at night emailing not one, not two, not even three but FOUR specialists in the field with my concerns. Noah has had one xray, 2 CT scans and has had countless office visits with 2 different specialists. I could not bring myself to log onto my blogger account and talk about anything. What was I going to say? We still did not know for sure if Noah was alright. I could not bare to put into writing what we were going through. The emotion of it all was much bigger than any blog could cover. All of my attention and energy had to be put into worrying about Noah. Healthy, right?

And the verdict? To quote one of our favorite specialists, Dr. van Aalst of UNC Children's Hospital (who performed Jack's surgery) 'On a scale from 1 to 100 of severity, Noah is a 3. Do not worry any more, let it go, enjoy your son!' The suture that was fused on Noah was his metopic; the suture that runs up and down in the middle of your forehead. It is the first suture to close, typically in the second year of life. Noah's was closed by the time he was four months old. In children with metopic cranio, the forehead starts to take on a triangular shape, pointing out in the middle where the suture should be. In very severe cases it is quite obvious from birth. Noah still has a nice square brow line, but a slight 'ridge' running down the middle of his forehead. Part of my hesitance to write about this is that I do not want to come across like I think my child looks odd. To me, he is perfect in every way! The concern was the growth of his brain. I was also hesitant because I did not want people to know that he has a mild case and therefore critique every little nook and cranny of his appearance. Now THAT might be vain, but who wants people looking at their child, thinking something is wrong with the way they look?!

After our last visit with Dr. van Aalst in September I let it GO. Just like that! I stopped worrying, I stopped taking pictures of his head, I stopped searching the internet for journals, research, articles, anything that had to do with cranio! It was like the proverbial weight was lifted from my shoulders. I could get back to the business of being a Mom to my perfect, handsome, thriving son!

And back in business we have been, Noah is doing great.

I know what you are thinking... then what is the 'sorta' all about in your title, hummm?

If you know me well, you know I have a heart condition. As this post is long enough I will not go into great detail about what type/symptoms/prognosis etc. There will be plenty of time for those details later. I will be having a procedure (my fourth) in January to try and correct this problem that I have been suffering with since... forever. Instead of taking the unhealthy and obsessive route that I took with cranio I decided I should write about what I am thinking and feeling. While friends and family often ask how I am doing I never open up as much as I could or should. Even after those few paragraphs above concerning Noah I feel so much better; I want that for my heart as well!

So bare with me... there will still be plenty of posts about Noah. After all, he is my heart!

We are BACK says Noah! And I know some of you might be curious, so in the above picture you can see the ridge that I was describing, right above his nose. Isn't it the most perfect and precious face you have ever seen?!


Emily said...

it IS the most perfect and prescious face I have EVER seen (besides my child of course)! Just the way God made him and he is PERFECT!! To be quite honest, I would not mind kissing that face until it was all slobbery from Aunt Em's spit!!!!!!!

jessica said...

ewww aunt em :) Tell Noah that aunt Jess will kiss his face but not leave him slobbery! Love you guys!

Lindsey Broere said...

It is the most precious face EVER! I can't wait until you guys are in town for a least I know I'll see ya at Lauren's wedding if all else fails!

Glad your back on blogger...

Cameron and Megan said...

He is such a cutie!

Chillin' with Lemonade said...

Hi! He is so precious! I can't wait to hear about Alaska!