Tuesday, March 23, 2010

Big Haircut for a Little Boy.

Well, I finally caved. The hair was too much and the head control was too little. After repeatedly pulling the little man's hair on accident trying to help his big 'ol melon (I should say his poor little neck) move, I had my limit (and I know Noah had his).

Now I feel strangely superstitious.

I've always said that I wasn't cutting No-man's hair until he walks. Did I subconsciously give up? Realize walking probably is not in his future (those damn little foxes!*)? God, I hope not and that wasn't my intention. I like to think I was being practical.

As my little dude gains head control he can grow a big huge head of curly locks.

Until then, sorry buddy, it's a buzz cut for you.

Friday March 26th is Purple Day. It's a day to wear purple to show your support for all of those who suffer from seizures. So maybe it was a good time for a haircut so no one will mistake my little man for a girl when he is wearing his purple! :)

*My friend Lauren put it so eloquently in her blog (THE BROWNS'...BLESSED BEYOND BELIEF (on my blog there's a link called "Gage" in the "blogs I follow" section and I highly suggest you check it out)) about those days when things just aren't "right".

Monday, March 15, 2010

Working Hard!

Today during PT I realized Noah doesn't appreciate belly time like he used to (it used to be his comfy position and he'd nap!). Well, he's rebelling! WaHooo!!! It's not pretty but he's getting there!

Thursday, March 11, 2010

Once Bitten...

Yes, I was bitten by the "Negative Bug" a few days ago. It happens now and again. I lose perspective on everything and focus on the have not and not the have. Guilty as charged.

I must move forward and give my No-Man (and myself) a break on occasion. ::smile::

We will continue to plug away and try our best. Dr C (Detroit Dr) looked over No's EEG and said it was "Good News!" and early intervention (PT, OT, and Vision) is what we need to focus on now to get No to his highest potential. That's what we'll do (it's what we've been doing) and we will continue have faith it will all "click" soon. C'mon baby, you can do it!

Monday, March 8, 2010

Reality Bites

It's finally hitting me (and hitting pretty hard) that there is going to be something wrong with Noah. We can "fix" all we can but it's never going to be enough.

I'm running out of excuses for why he isn't doing things.

First, it was being premature. But being premature doesn't necessarily keep you from developing and doing typical baby things. Second, it was the SCT and surgeries but there are many kids with SCT resections and they are just fine. Third, it was reflux. We couldn't work him hard enough and position him correctly to do all the therapy he needed because he always threw up. Last, it was seizures. The electrical storms constantly firing in his head kept him from learning or retaining new information.

So we went down the checklist of ailments and managed them to the best of our ability. Tonight I find myself sitting here scratching my head trying to figure out for the life of my why my little boy won't smile or reach for a toy or acknowledge me or miss me when I walk away or cry when he's hungry or love me back in a way I recognize. And the reality of our situation is slowly sinking in like a knife being pushed into my heart.

Because as of now, he just ran out of excuses of why he can't. So, why won't he?

Friday, March 5, 2010

New Year's Rockin' Eve

While things aren't happening as quickly as I'd hoped (developmentally) they are definitely improving. The weather is getting nicer and we are able to get outside more and more. I just want Noah to start doing STUFF! GOOD STUFF (not seizing or throwing up; I always feel like I have to cover my bases when it comes to asking for things!) like reaching, smiling, chewing, you know, normal baby stuff! I am just never satisfied! I just keep pushing and most times pulling for more.

Now for an update on the recent doctor visits:

MRI: No changes! WhaHoo!
AFPs (alpha fetal protein level which is a tumor indicator): DOWN DOWN DOWN from last time! THANK GOD!
Surgeons: Satisfied with progress so far. Surgeon 1 we will see in a year and have another MRI. Surgeon 2 hopefully we won't see again (nothing personal!).
Urology: The "ball dropping" isn't just for Dick Clark on New Year's Eve (my very poor attempt at humor). No-man does have a testicle that didn't descend so they have to go in surgically and bring it down. This surgery is scheduled for April 12th. YES folks, ANOTHER freaking surgery. Whatever! SO SICK OF THE HOSPITAL! But hopefully this will be it for a while.
Keto Team: Pleased with progress. Will talk about weaning meds at our next visit in 3 months if our little man can manage to maintain seizure freedom.
Eye Doc: Wants to see how No progresses and hopefully with head control, eyes will improve. Keep fingers crossed!

That's about it, I guess. Three days is a long time to spend running from floor to floor at CHOP but it was SUPER nice to have my NICU friend come along for a day. Thanks Amy! We are so happy to be home and getting back into our routine.