Sunday, May 23, 2010

Time Flies!

It has been almost a month since my last update.  I think that is probably not a bad thing...it means nothing big has happened.  But at the same time, a lot has happened!  I thought I would take a few minutes on this very quiet Sunday morning to catch you up on The Lochamy Boys...

Colin is simply amazing.  All of a sudden (with some restless days and nights), he has 8 teeth!  I think it is 8...he clamps his mouth shut if we try to look.  He also clamps down on fingers so no way am I putting my finger in to feel exactly how many, but I think all 8 have finally poked through.  He learns new things very quickly...you can watch him watching something new and can just see his wheels turning.  He has also just figured out a few things on his own.  When I am "high 5-ing" with him, sometimes I close my hand.  He pries my fingers open so he can keep hitting my palm.  He loves ANYTHING that spins...a lot of the toys have moving parts, but the wheels and gadgets that spin are definitely his favorite.  HOW DOES HE KNOW TO DO THESE THINGS?!  He is so much fun to watch!  He isn't crawling but wow can he move around!  Crawling is the very next thing, I'm sure.  We haven't encouraged it because I know once he figures it out, we will spend most of our day trying to keep him corralled!  I am pretty sure in the next few weeks, we are going to put the dining room furniture in storage and turn that area into the boys' play room.  I'm thinking the rubber mat squares on the floor and all of their toys will make a fun place!  Plus gates of course!


And then there is sweet, brave, strong (in the character-sense) Ethan!  Within the last week and a half, he has transitioned to wearing his helmet 23 hours a day (and is doing VERY well in it).  He is so cute...Allen's mom says with his face framed by the helmet, he looks more like Allen than ever.  Personally, Allen and I think he also looks a lot like her...which is very sweet to see, since he is named after her!  My mom calls him "Super Ethan!"  He is having surgery on June 16th to have his neck muscle that is still so tight "released."  The doctor  actually cuts some of the tight muscle out to allow it to stretch.  Ugh...but the he is VERY confident that we will see good results quickly.  THAT is good news!  I have been very careful using the words "special needs" when talking about Ethan.  Everything we know about Ethan's "condition" (which isn't much and we still don't have a diagnosis, more on that later) tells us that he should grow out of a lot of this, if not all.  Well, what I mean is that as he gets stronger, strength will help him compensate for his low tone.  His physical therapist says she has seen low tone babies sit up, crawl, walk...just delayed, which we already knew.  His doctors tell us, without making promises, that things SHOULD improve as he gets bigger and stronger.  All of that to say...we did buy him a special needs chair.  I gulped as I ordered it...but it is called a Tomato Seat and is specifically designed to help babies with low tone build core strength.  Ethan LOVES to sit up, so we can't wait to learn how to position him in it so he will be able to sit up more during the day.  Right now, he lies down to eat (Dad...is that proper grammar?) with his head turned to the right.  Unfortunately, that positioning does not help his neck at all.  I really try not to do a lot of "what ifs" in life.  I don't think it is constructive and it certainly doesn't show a lot of faith in God...and I think He can make all decisions "work."  I do think that we could've helped Ethan a lot more with positioning...and maybe we wouldn't have to have surgery.  There are a lot of ways to think about it...but I am trusting that we are walking down the right road for right now.  We want what is best for Ethan...always...and we don't enter into any decision lightly.

Whew...so...we have put off another surgery that another doctor wanted to do on June 16th.  Every doctor we've ever seen with Ethan has mentioned a muscle biopsy.  We now are working with Dr. John Shoffner.  He is the director of Medical Neurogenetics, which is a lab that does LOTS of specialty testing.  He wants to do a muscle biopsy and a spinal tap on Ethan to see if he can diagnose him.  At this time, we are staying active as a patient but have declined surgery for now.  Ethan is progressing, so Allen and I aren't in a hurry for a diagnosis.  As I type that, I do have to say that this testing IS in Ethan's future.  There could be medicine or treatment that would help him, so we don't want to miss out on that.  But for now, we are fine with putting off the pain of additional surgeries.


Both boys are very happy.  The both clap their hands in response to "yay Colin or yay Ethan!"  They both love to smile and laugh.  Colin and I look at each other sometimes and just start laughing for no reason.  You can see his whole body shake.  Ethan's laugh is so different, but it is a wonderful sound.  Their smiles and laughter are my VERY favorite part of being a mommy!!

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