Skill evaluation and more

I decided to have Olivia's eating skills evaluated by Early Intervention. I wanted to get it done before she aged out of the early help programs which are for 0-3 year olds. She doesn't turn 2 until September (21 months right now).

When they put the NG tube in, she completely regressed in her oral skills. After 6 months, she has finally gotten back to where she was before the tube was introduced. She has not gained any new feeding skills. Based on what the older two were doing as far as eating at this age, I wanted to check to see if they considered where skills behind or not. Not being a doctor or therapist, I can only judge based on what the older two were doing at this age or by what I read online. The only way to do this was with a full evaluation. I knew her other skills were on target and not delayed. The only thing I was worried about was the feeding skills.

So the lady came today to do the evaluation. Olivia's feeding skills are at the low 2 year old range except for spoon skills which were a tiny bit lower.  Probably not enough to be considered a delay,. The rest of her skills amazed the lady. She was testing at the 2.5-3 year old range on most of her other skills. I have one smart peanut on my hands. Of course, the lady couldn't officially tell me that Olivia wasn't delayed. The results have to be plugged into the computer to get an official "number". So I have to wait to here back to see if she qualifies for early intervention which I don't expect she will. The only thing that *might* get her in will be if they ever officially diagnosed her with Failure to Thrive (FTT) in her medical records.

On another note, she has been binky-free (pacifier) for  3 weeks now. YAY! She was mostly using it only at night with an occasional use during the day --- if she found it during the day or  if she had something "dramatic" happen; such as, scraped knee. Three weeks ago I stopped using them at night and tucked them away where they couldn't be seen but they were still available if needed. She hasn't asked for one since. Of course, it might be different if she ever sees one. LOL. 

Eating frustration ... Ugh

For two or three days, Olivia has been drinking 3-4 oz of her Pediasure consistently at a time. At those rates, I have a chance of actually getting her all the way off the NG tube. However today, she has decided to drop back down to 1.5-2 oz consistently. Argggghhhh!!! Hopefully the latter is the fluke and not the former. /sigh

Relief times 2

We got the Genotyping back for the older 2 girls. Both are carriers of the CF gene but neither has it. One has the most come gene - the DeltaF508 and the other has the other gene that Olivia has - the 394deltt. One of them is also a carrier for another rare genetic disease (Zellweger Syndrome Spectrum). I haven't really had time to investigate it other than doing a quick general search. But from that search it looks like it may be even rarer than CF. Good thing she's only a carrier.