Thursday, February 25, 2010

Developmental Update

Jimmie went and saw his Developmental Pediatrician Dr. H. this week. The report is mostly good. Jimmie is doing awesome eating solids and is even starting to make some headway with taking liquids by mouth. Progress with this is slow, but there is forward progress.

Jimmie's nutritionist has worked with Rachael to create a new plan for Jimmie's nutrition. Basically Jimmie will take in almost all of his nutrition by mouth. He will be fed solids (by mouth) 4 times a day. This includes smoothies and liquid from a straw and/or a sippy cup. He'll receive only 3 feeding of breast milk through his g-tube. Those feedings will be in the late afternoon and evening before bed. They feel this new plan is possible because Jimmie has been eating so well and he gained almost a pound in the last 2 weeks!! He's is now around 14 1/2 pounds again. That is about what he weighed before he lost weight from the g-tube surgery and that bout with the stomach flu.

Physically Jimmie is way ahead. He is pretty much on par with his *actual* age of a year old instead of his developmental age of 9 months. This is just astounding considering how far he's come. He has taken a step or two on his own, but he crawls so fast and gets around so well that Rachael feels it will be a while before he chooses to walk simply because it's slow and Jimmie has an agenda that can't wait! (-;

Other than the fact that Jimmie still needs that g-tube for liquid intake the only other concern that has recently started making blips in Rachael's radar is speech. Jimmie is not babbling. At this point Dr. H. feels he should be. Jimmie does not say, "ma ma ma" "da da da" "ba ba ba". He mostly just squeals, screams, makes gutteral sounds in his throat and has some nasal resonance (blowing air with a little sound out of his nose). The first thing Dr. H. has recommended is to have Jimmie's hearing checked. Jimmie did pass his hearing test right before he was released from the NICU. It is clear that he can hear, but there could be high end or low end hearing loss that could effect his speech. We doubt it, but when speech is in question- a hearing issue is the first thing to be ruled out.

My daughter McKenna has been diagnosed with a speech disorder called Verbal Dyspraxia. Dr. H. knows about this and mentioned some of the latest research on this disorder is showing that a paticular gene defect has been found. This defect could be inherited... I'm going to be doing more research on this myself and possibly get my daughter tested. We are really hoping Jimmie does not have this same disorder and is just a bit delayed because of his prematurity. But if it is something a bit more serious we are ready to work hard and overcome.

Join us in prayer for Jimmie's ability to take in liquid and also that he would start babbling and that speech would not be a big issue. This little guy has worked so hard to get this far and it would be so great to *not* have to watch him struggle for speech. Believe me though we have perspective. We remain so grateful and in awe of how fortunate we are with Jimmie . . you know . . . considering . .

Love,
Amber

3 comments:

  1. Try not to be too concerned about the babbling. My little guy will be one on Sunday and just in the last few weeks has he really started to vocalize the mama, dada, and other sounds. I wondered about hearing too but I think he was really just ignoring us, because I could whisper his name and he'd whip around and other times I could stomp on the floor and get no response. It will happen when he is ready not when the doctors say he should be. I stressed myself out thinking he couldn't hear and all along he was just taking is time.

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  2. Yes, hopefully this is just a matter of making sounds when he is good and ready - but it's good to check things out. Just think, one day he may be talking non-stop and you'll think "oh, remember those nice quiet days?!"

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  3. That's great on the eating and weight gain!! YAY!!

    We'll be praying about the speech issues and for your peace of mind!

    Lots of love,
    Adrian and Janelle

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