Remarkable Robbie: Busy week

Robbie has had a very eventful couple of weeks.

Last Thursday he had a NICU follow up evaluation. The NICU does checkups at regular intervals (6 months for a while, then every year) to monitor how their grads do. It is mutually beneficial because not only does it help identify any problems the children have, but also provides feedback to the NICU on areas they could improve upon.

It's programs like these that helped identify that too much oxygen was leading to eye damage and since then, the rate of blindness in preemies has lowered immensely. (Your fun (not so fun?) fact of the day: Stevie Wonder is blind from this. He was a preemie on oxygen.)

The evaluation itself was pretty painless. Robbie seemed to think most of it was actually pretty fun. He loves people, so he got the opportunity to flirt and play with some new toys. The only bad part was the tummy evaluation. He still hates tummy time!

In the end, it netted few surprises. Since we had Robbie evaluated by our state's Early Intervention program as soon as he got home, they re-evaluate him on a regular basis. We already knew he was behind in gross motor skills.

Basically, they evaluated him in three areas:
Development
Gross Motor
Fine Motor

Both Developmental and Gross Motor skills were assessed at his adjusted age (7 months.) He did have a few 8 months skills as well.

Gross motor was unsurprisingly sucky- 5 months. They agreed that it is all attributable to his stomach trouble and were happy to hear that we are already receiving in home therapy.

The only part that truly took me be surprise was how upset the neonatologist was about Robbie's lack of eating by mouth.

Now, clearly, we knew that not eating was bad. That's why we've been in the hospital, had a G-Tube put in and obsess over every ounce.

But Dr. Klesh was very concerned about his verbal skills. Basically he said that if he doesn't eat, he won't speak. Truthfully, he scared the crap out of me.

He recommended that we see the clinic's feeding team ASAP. He was so concerned that he actually had us worked into an earlier slot than was actually available.

It was scheduled for Monday 4/13.

In the meantime, though, Robbie and I took our first road trip! Easter was Sunday and his grandma's birthday was Monday, so we drove down to Sikeston, MO to spend a long weekend with her.

Robbie did very well on the trip. He made it 2 hours before becoming pretty insistent about stretching his legs. Unfortunately it was pouring rain so stopping at a rest stop or something wasn't an option. So a gas station it was.

Since Robbie's never been anywhere in public that wasn't a medical center, I was very nervous, but I took my disinfectant wipes with me and kept my guard up. Fortunately no one tried to touch him. They were content to just ooh and ahh.

Of course, I got the usual question- "How old?" and when I answered "10 1/2 months" I got the usual shocked look. "Really? He's so tiny?!" I resisted the urge to say something smart and simply explained that he was a preemie and was very small to start with. Someday I'll get used to that.

Anyway, we then headed off to grandma's. Robbie had a great time. He got to visit with his grandma and his uncle and even said hello to a neighbor across the fence.

Easter brought lots of fun toys. In usual child fashion, his favorite thing was the card he got from his grandma. He spent hours gnawing on it.

We headed home that night. Once again, he traveled well. He got a little fussy again about 2 hours into the trip but was able to be placated with a pacifier so we didn't have to stop.

Monday was the big feeding evaluation day. I was pretty nervous, but it went very well.

He saw an OT (occupational therapist) and an SLP (speech language pathologist.) They watched me attempt (quite unsuccessfully) to feed him a bottle and (somewhat successfully) some bananas.

They asked a lot of questions and observed him.

In the end, the outcome was both good and bad.

The good:
Robbie's way ahead in speech. The SLP doesn't think he needs speech therapy at all. She had actually misread his file and thought he was 10 1/2 months adjusted instead of actual. She said he was "right on time." When we corrected her that he was 10 1/2 months ACTUAL, she was overjoyed. "Oh, well he's WAY ahead, then!" Basically because he has two syllabls (mamama and bababa) he's doing well. She actually thinks he'll speak early.

I told them that Dr. Klesh had scared me saying that if he didn't eat, he wouldn't speak. They shook their heads and were adamant that is not the case.

They said that because he is so oral in every other way except food, he's keeping up his oral skills. Since he likes to chew and explore with his mouth, he sucks on his pacifier and other thing, he's learning to use his lips and tongue just fine.

The do want our home OT to make sure he keeps up with his oral skills, but it's more of a "keep an eye on it" situation than a "needs intervention" situation.

What a relief!

The bad:

They don't have any grand solution for his eating. They pretty much said that I've already been doing everything I should be. They were pleased with the games I play to get him to take solid food (even though it's very small amounts), and recommended a few extra tricks, but really said just to keep doing what I'm doing.

Their only real recommendation was to get us hooked up with a developmental nutritionist to help figure out how to get the most calories into him. I told them that we'd worked with a nutritionist already, but they wanted us to have a specific type of nutritionist to come to the house and work with our OT. It's all about figuring out what we can get into his tube that doesn't anger his reflux any more than absolutely necessary.

They said that it will very likely be several years before we're past this. They agreed with our pediatrician that it may very well be kindergarten before we get through this.

While it was nice to hear that I was on the right track for managing things, it was also pretty disheartening to think of years more of this. But I suppose that we deal with what we're handed.

In the meantime, Robbie has been having a HORRIBLE reflux flare up. It honestly was as bad as it's been in about 6 months. We upped his meds and he was still screaming with every meal. We've adjusted his meds again and it seems to be improving a bit again, but we had yet another (this makes 4!) upper GI today just to make sure that his hiatal hernia hadn't reared its ugly head again. Thankfully the radiologist told me that everything looked okay. He did confirm that he has a lot of reflux (DUH!) but all of his surgical repairs are intact. Relief!

--Trish

And now for some Easter weekend pictures!