Wednesday, May 26, 2010

Weight has been lifted...

and it's not the SlimFast (what an awful diet, BTW!).

So, I canceled. I felt like I was calling in sick to work and LYING (like the time I called in sick from an office job in Colorado... in the casino parking lot in Mesquite Nevada.

Todd was a bad influence (although looking back, I think it was my idea)!


Ahhh...the early days of our relationship. Good times!

It felt good afterward and I actually rescheduled for August, just in case things don't get better and we get desperate.

So I do have some better than average news to report about my little man. Let's just call them "Noah's Developmental Milestones" since he has decided to rewrite that book all together.

First, he has been spending more time on his tummy and less time crying about it. I actually caught him LOOKING around at some toys and a mirror (he didn't think I was watching). He has managed to roll over completely from his tummy to his back (he does tend to stop once he reaches his side but we are occasionally surprised to find him rolling onto his back). And today he started playing a game with me. I started by standing in front of him and then walking a complete circle around him. He actually followed me to his left side then turned his head to the right to "find" me when I came back into view. He did it several times and was rewarded each time with TONS of kisses and YIPPEES! Lastly, I started sitting him up on his mat and using HIS arms to prop up. He'll stay in that position for quite a while before his poor little arms give out. But it's so cool to see!!!

It's been a total blast to see him respond and start doing new STUFF! We are over the top excited and can't wait to just watch him BLOSSOM from here! I just hope he keeps it up (my always guarded optimism). What a little TATER (as in "Tater-Todd", a little nickname I've decided to give him!). :)

See, it's not always terrible and dramatic around here! Some days I'm just beside myself with gratitude. :)

Monday, May 24, 2010


Do you ever sit around and decide to do something totally time consuming and a complete waste of time just because?

I do.

I've been thinking about how many trips we've made to CHOP since we actually got to bring Noah home. So I broke out the calendars and my "Noah's Medical Journals" (I've been writing down his feeds and throw ups for more than a year now).

We have 4 pending appts in June and am seriously considering canceling one of them.

I am so SICK AND TIRED of the hospital (I do believe I've said that so many times before but I cannot emphasize it enough). It's actually not the hospital itself; it's the preparation, packing, and finally, the drive.

I have such anxiety about the trip. Noah DOES NOT travel well. By that I mean it's all about gagging and throwing up and crying for the 5 hour trip. It's a little hard to concentrate on the road when your kid is choking on vomit. I won't even go into all the baggage that accompanies my little man every time we leave town. Thank God my parents have loaned us their Surburban to drive so I can actually take all the supplies we need.

When your kid has a diet that treats his seizures, food becomes REALLY REALLY important.

Throwing up isn't an option any longer.

Noah had surgery to correct his reflux and thus his throwing up (The fundo, remember?). It didn't really work. He is throwing up and I mean throwing up, like CRAZY! I'm going insane.

I am trying to juggle feeds (every 2.75 hours), free water feeds (1.75 hours post feed, 45 minutes prefeed), throwing up, refeeds, 6 therapists coming to the house, Poor Miss Hanna who is relentless with her ball, the house, and Joey who is incessantly crying for kitty candy.

Now I am having anxiety attacks about an upcoming appt at CHOP that I seriously think is ridiculous. It's the fundo program appt. I just can't imagine what they can tell me. Surgery didn't work? Let's run more tests? More surgery? Re Do? G-tube? See, the thing is I DON'T CARE what they say. We won't have another surgery (one thing I hate more than dr appts is surgery). We won't opt for a tube (it doesn't stop throwing up anyway). The last time they did an upper GI study it was a TOTAL NIGHTMARE.

So I guess I have to resolve myself to this reality.

Noah will always throw up. Walks are a thing of the past. Thank goodness someone decided to drink fermented grapes and then make more for the rest of us.

It's rough. I'm tired. I feel terrible for a boy who will never enjoy eating. But it is what it is. At least he's not having seizures to top things off (knock on wood). He does cry a lot. He hates all therapy. He doesn't like to be touched. But he IS cute as can be and he is mine all mine!

So CHOP, I'm breaking up with you. We have been to visit you every month since Noah came home (Nov 2008) except for 4 (one of those months we went to Detroit to see the Infantile Spasms Guru). 18 months out of 21 we have been to the hospital for one reason or another.

I am DONE, DONE, DONE. Think I will cancel that appt. My baby needs a break (so do I!).

Sunday, May 2, 2010

I've been on a bit of a sabbatical lately because I just don't know what to say. There's been a ton on my mind and every time I sit down to sort through things I suddenly get writer's block. Go figure. But I can't leave Noah's "fans" hanging for too long. It's just not fair to you.
So I've decided to sit down and force myself to get some things out.

We are planning a trip back to Colorado (Noah's first visit) in July and I'm nervous. It scares me to leave this environment to which we've both become so accustomed. We are total "home slices" and don't deviate from our usual routine in a good way. But it'll work itself out and it will be good to get out of the house and do SOMETHING. Right?

Noah has changed formula in an attempt to cut out the spitting up (Remember back in the day when we had surgery to stop this?? Yeah, me too). It hasn't worked and the spitting up has become throwing up and is occurring with tremendous frequency. It's really making me crazy and desperate. We've stopped going outside for our walks and are confined to "the room" yet again. Hopefully this will get better. It has to. Right?

We've decided to incorporate a hearing teacher, speech therapist, and a teacher to Noah's schedule (in all our free time between PT, OT, Vision, feeds, and spitting up). Should be interesting. But we are trying to do everything we can to ensure Noah meets his highest potential (God, I hate that freaking phrase.).

That's about it for now. He's up from a nap and I'm back on Puke Patrol.