Wednesday, June 30, 2010

Count Down Begins...

Well, it's getting closer and closer to our trip. I'm excited and nervous and becoming a bit neurotic. I've received the itinerary from my mom including our stops along the way. I immediately Map-Quested the nearest Children's Hospital to each of our overnight stays. Think we should be in good shape as long as Noah can behave once we hit Kansas and Colorado. :)

We have Nana and Poppy coming tomorrow and my parents and Mal will be here on the 4th. Noah has therapy on the 6th and we leave the 7th morning. Whew! It's going to be wicked hectic but all worth it once I'm relaxing with my little guy and Hanna looking at Round Top and Red Mountain from my parent's balcony with a nice glass of vino! Ahhhh... can't wait!


Tuesday, June 22, 2010


After reflecting about my last blog (and I am tempted to delete it but I won't because the emotions I expressed are real), I'm bothered. I hate putting negative blogs out there although honestly it's way easier to list the negative aspects of the day when I think about what my kid does NOT do than to reach deep down and find the positive.

BUT, after watching a really sad "Law and Order" about a mother who left her disabled son to seize to death by withholding meds thinking it'd be better for him to die than to suffer (I swear I saw that episode YEARS ago and it didn't quite have the impact it does today) and a glass of wine (::wink::) I decided to pull up my boot straps, thank my lucky stars and God for my beautiful little boy and the Ketogenic Diet, and really reach deep down and find something positive and progressive about Noah's development.

His refusal for food is a development! He just isn't as passive as he used to be and he doesn't quite know how to express himself or assert control over himself or his life. So he is rebelling in a really bad way! I wish he would rebel by crawling out of the room, but you take what you can get. :)

So I've snapped some new pics of the little man. Boy, he's growing like a weed. Hopefully he will start getting some control of his body so he can help out his poor mama's back! Enjoy!

I know it's been too long since an update when my friend Amy texts me to get the latest on my little man. ::smile::

I keep thinking about what to say but when I get to my keyboard I get stuck.

Noah is being Noah. Which means he's healed from the pneumonia (Thank God) and he's back to his usual self when it comes to feeds and then some. He has started retching and gagging the minute I pick him up and hold him in "feed" position or when the bottle comes near his face. It usually leads to a pre-feed throw up. Nice, huh?

Such a Bad Bad habit! He's impossible to reason with and impossible to bribe so I'm getting to my wits end and patience is dwindling.

On the PT and OT front, we keep doing the same stretches and exercises every day with no results. I'm ready for some LEAPS and BOUNDS of development (I'd even take a small hop at this point). I'm tired. I want results. I feel like I've been going full speed ahead without letting up for a while now and just a little bit of improvement would keep up the momentum. But it's just not happening. I feel deflated and worn out.

I'm very much looking forward to our trip to Colorado. I think looking out of the window at a new view may be enough to recharge to old batteries. What I wouldn't give for my little man to behave long enough for me to get a massage, haircut, teeth cleaning, pedicure,.... okay, let's be realistic, I would LOVE a worry-free shower for longer than 5 minutes. My hair is dying for some conditioner! But as of right now N-man has me watching him like a hawk (a hawk with hairy legs and split ends!). ::Smile::

Sunday, June 6, 2010

Pnever a dull moment with Pnoah

Facing the fears this week.

Hospital (NOT CHOP) and the dreaded P-word (PNEUMONIA).

Noah was acting a little "off" this week so I knew something was up but just couldn't put my finger on it. He started off cranky then moved onto coughing then into breathing kind of fast then I headed to the Pediatrician's office. I don't really mess around with respiratory issues when it comes to my little Noah so I thought he should have a once over by someone with "MD" after their name.

Needless to say, we were admitted to the hospital after a short visit with our doc.

So we are home finally. I shouldn't say "FINALLY" since we've been in the hospital for a much longer stay and there are kiddos out there who would kill for a 4 day stay. But for us, we feel like we've served our time in such a place and do not like it one little bit when we have to go back.

Official diagnosis: Pneumonia (hence my not so clever title).

Unofficial diagnosis made my Dr Mom (and a few nurses): Infection that would have most likely developed into Pneumonia.

Dr Drama (I do like our pediatrician but I think sometimes he's a touch dramatic when it comes to Noah's diagnoses) was actually the attending doc in the hospital for our last couple of days which was really nice. He let us come home with oxygen and breathing treatments rather than making us stay until Noah is completely free of oxygen support. It's great because knows us and knows No would do better at home and trusts that I will do what I'm supposed to when it comes to his respiratory therapy.

AND let me just say (this is a little hard for me since I consider myself a "CHOP snob"), the hospital, nurses, and docs were amazingly wonderful. Noah got such great care (except for some blood draws by some inexperienced phlebotomists, bless their hearts). The compassion and understanding was tremendous and I cannot say enough good about our experience. They even let me co-sleep with my little man. Unheard of at CHOP! The nurse rolled in a big 'ol hospital bed and I signed a little waiver and that was that!

The doctors did exactly what needed to be done and they got us home pretty quick. I am so grateful! I was nervous going to a rural-ish hospital (ie NOT CHOP) but pleasantly surprised.

So that's that. We are home. Noah is resting comfortably and though he's a bit weak, he's doing awesome. My little ROCKSTAR!