Thursday, March 15, 2012

NICU Developmental Clinic Visit #3

We had our 3rd NICU Developmental Clinic visit this afternoon - it was a long appointment, and we got mostly good news!

The neonatologist and the physical therapist both were pleased with Judith's progress!  She is within the normal range for her adjusted age in all areas except 1, where she is between her actual and adjusted age (she scored at a 14 month level in cognitive development).  They're keeping an eye out for a couple things, one of them being some low muscle tone, and she's been fighting that since birth.  She'll still sit in a "w" position, which apparently indicates the low tone, but her core strength is really improved, so that's a bonus!

They're recommending that we continue with Early Intervention, since she would still qualify based off of the areas she's lagging in.  The telling point for that will be her annual evaluation in April, and it will depend on the therapist they send to complete said evaluation.  Her EI therapist, however, thinks that with the progress she's seeing, she should qualify for a few more months of services.  We'll have to wait a month and see what happens.

The one concerning thing is her weight gain.  They did a digital naked weight instead of a naked weight on the regular scale, and she weighs 18 lbs 12 oz.  For her, that's kind of a big difference from the 19 lbs we thought she was the other week.  That also means she's only gained about 5 oz since she was at the CF clinic in early February.  It doesn't help that she's hit the picky toddler stage, and also thinks it's entertaining to feed the dogs (and they certainly don't help matters with their constant begging).  It's hard to strike that balance: the dogs get upset if I pen them in a separate room, and they think they're in trouble, and Judith keeps looking for them.  But she eats, and doesn't throw as much food on the floor.  On the other hand, if I try to not upset the dogs and leave them roam, 9 times out of 10 Judith waits for one or both of them to stand by the high chair and starts dropping food to them.  Obviously I'm going to do what's best for Judith, but it's going to be an adjustment period for all of us, and Buster & Lady will need to learn that they're not in trouble.

I'm also guessing that her increasing mobility is playing a factor in all of this.  She is constantly on the go right now, and I only see it getting worse once she starts walking.

Taking all of that into mind, I have no clue what they're going to say at our next clinic appointment if she still hasn't gained a lot by then.  In the meantime, we're going to have to try to push more high calorie foods for her and see if that can make a difference.

1 comment:

  1. Hi there,

    I found your blog while doing a search for cystic fibrosis. I thought I would comment just to tell you our story and give you some hope. My husband has cystic fibrosis and has the DF508 mutation. Actually, he and his brother and sister all have cystic fibrosis with the same mutation. It is so rare that all siblings would have it. They are all in fairly good health. Only one sibling has ever had to be hospitalized with IV antibiotics, but even still she is in great health. My husband is 34, his brother is 30 and his sister is 26. I'd be happy to answer any specific questions that you have. Most of all, I just wanted you to know that your daughter can have the possibility of a normal life. Feel free to email me at