Tuesday, April 27, 2010

Back in a funk

I've been feeling kind of blah lately. More frustrated than anything really.

Noah is being Noah. Unpredicatably predictable. Last week, he was in a good mood and somewhat receptive to new forms of therapy. This week, he's been very grouchy, whiny, and uncooperative. He's not into PT and OT this week. He's really into being left alone. I am so ready for strides of massive proportions in a forward direction. NOT sideways or backward.

I want grabbing toys. I want reaching for me. I want giggling. I want laughs, not cries. I want. I want. I want.

It's not really about me. It's about him. He who doesn't WANT to do anything. We've been having conversations about the intrinsic desire to WANT things or his lack thereof. He doesn't WANT to even have the discussion. He does want one thing...to be left alone. I just can't accept that.

So, our days are filled with me trying to convince him to do things and he just disagrees in his Noah way. What is the Noah way? Well, let's just say it's his way of shutting me out.

Umm, he's not sleeping....

Friday, April 16, 2010

...the rest of the story.

Well, our trip to Philly was less than boring, yet again. :)

We went on Sunday and met with my parents, sister, and niece who flew in from KS and CO. It was so excellent to see them and Mallory (my niece) FINALLY got to meet my No-man. She was so incredible with him it brought tears to my eyes. He was taken by her (who wouldn't be as she has grown into such a beautiful young lady of twelve) and she very patiently read to him and stroked his face and head and spoke so sweetly to him. Very very precious. I jokingly say I'm training her to care for him after we die if he requires such care, but I'm not really joking. :)

We got to CHOP around 6 am to check in and do the usual meetings with the docs and nurses and go over procedures. Thankfully No held his O-sats long enough to please the intake nurse (although they weren't quite as high as they should be).

As we sat in the waiting room full of parents waiting just sitting around with their faces full of fear and exhaustion I found myself eavesdropping when the update nurse came by to tell all of us how our kids were doing. Somehow hearing that some kids were going to be in the OR for 6 1/2 hours made me feel a little better (such a selfish thing) and I kept flashing back to No's surgery that lasted hours and hours (his spinal surgery). Oh, that was such an awful wait. Thankfully this one was only about 2 hours.

We got to go back to recovery to wait for him to wake up and our hopes of leaving soon after were sky high. That soon faded when Noah kept dropping his O-sats and really freaking out the nurses. At one point they were trying to secure the seal of the face mask and began bagging my baby. He of course freaked out and I had to say something like..."Just stop and give him a minute!!!". They did and he recovered but they admitted him in the the ICU for the night. Seems like they didn't take me seriously when I told them this was typical of his post anesthesia self and he proved me right by not having anymore issues and was a total rock star for the duration of his stay. I, however, was a wreck. I really don't like being in the hospital. I mean really really really don't like it. I've/we've served our time and now I hope we get a break (a very very very long break) from visits in the future.

We went back to the hotel and spend the next two days with my family eating, playing Wii and Sorry, and just really enjoying being together. We had an audiology appt and Miss A actually told us No has capabilities of hearing normally (if he does or not is a different story and that would make it a neurological issue) so that was a huge improvement from our last visit. Our Neonatal follow-up appt just told us that we are doing the right things to support No is this battle and he looks better than then last time they saw him. Yippee!

Did you expect anything less from my little hero? He is so amazing and we are lucky to have him in our lives. I find myself thanking God everyday for blessing me with such an incredible soul for a son. Who would have thought that I'd be trusted with such an important job? I certainly didn't.

And now you know the rest of the story. Good Day! (that one was for you Pops and in memory of Paul Harvey).

Thursday, April 15, 2010


So I know many of you are anxious to hear about what happened with surgery and appts. I'm exhausted so this is just a status update.

Surgery went well.
Stayed in the PICU that night.
Left next day.
Had appts next day.
They went well.
Loved seeing my family.
Didn't have enough time with them.

I really will do a real post later. Just want to gel for the night.
Thanks for the prayers and the positive thoughts you sent our way. Once again, it worked!!!

Wednesday, April 7, 2010

Little of this...little of that (pics)

The Stander (aka Medieval Torture device if you ask Noah)
Easter Sunday
Actually propping ON HIS OWN!
The Creepster Crawler (yes Noah, I am totally serious about this crawling thing!) ::smile::

Monday, April 5, 2010


Noah had a nice Easter (so did we). Nana and Poppy came up for a visit and Hanna had a total blast following Poppy around (NONSTOP!). We got a big Easter basket filled with deliciousness and it was great to have company in the house. Poppy keeps Todd on his toes so Nana keeps me and No company.

No-man is being a little feisty. It's hard to blog about it. I'm feeling a bit defeated yet again. He's figured out how to throw up again so we are dancing that dance (part two). It's not as intense but it's definitely a little more unnerving since it was supposed to stop for good with the Fundoplasty. Not the case. We've made the phone calls and sent the emails to possibly try a new formula but nothing happens overnight when it comes to change and THE DIET. We were attempting solid foods and he was doing pretty well, but that is all on hold for now. :(

Surgery is next Monday and I'm becoming more anxious with every passing day. THANK GOD my parents, sis, and niece are coming in for support. We will be able to spend a few days together and so what if it's in the hospital! That's a second home for us anyway! Frankly, I feel more at home there than most places.

On a high note... Seizures are still at bay (Knock on wood!!!) and Noah is using his new equipment (Stander and Creepster Crawler). He's SO NOT a fan of the new "toys" but boy oh boy I am! Push Push Push!!! He'll be walking in no time, Pops! :)