Tuesday, October 13, 2009

Hypotonia and Micrognathia

It has been a few weeks since I posted an update about Mary. In that time, we have continued to visit a speech therapist once a week as well as practicing some oral exercises at home to strengthen her mouth muscles.

Additionally, Mary went to her one-month well baby visit. At that visit, the doctor diagnosed her with hypotonia, which basically means she has low-tone in her muscles. This results in delayed milestones and possibly delayed speech. We really won't know what affect, if any, this could have on Mary for the long term. The doctor also gave us an additional referral for physical therapy and we followed through on that just a few days later.

The physical therapy (PT) evaluation went well and I was happy to confirm that Mary has just a mild case of hyptonia. We don't know the cause (and may never), but we do believe that with additional exercises, time, and motivation, this is something that we can over come. For those of you who know and love Mary, please don't stress yourself out trying to Google hypotonia. It won't make you feel good and could put dread in your heart about what might never be. We are just going to take this one day at a time and since Mary isn't supposed to roll over, crawl, or walk yet, we are still right on track. :)

For now then, we are visiting a speech and a physical therapist once a week and augmenting that at home with techniques designed to wake up the nerves in  Mary's body. We do cheek pinches and stretches, tongue tickling, joint compressions, and I'll be adding baby massage this week as well.

Some of you will be wondering about Mary's nursing too. As of right now, she isn't. I am still pumping 7-9 times a day and giving her breast milk in a bottle. She still dribbles milk when she is tired (from working to drink) and we've had no success breastfeeding yet. I've tried a nipple shield several times, but, even after manual compressions to get let down, it is too much work for her. Coming straight to the breast to nurse has had better results so far, but still no real latching or nutritive sucking.

Oh, and the other diagnosis Mary received was micrognathia. Basically, this means the doctor feels her jaw is smaller than expected for the size of her head. No treatment for this, and we expect her jaw to catch up with the rest of her by puberty. (I don't think this will affect nursing though based on my online reading.)

I probably won't have much to say about this unless I get cranky and need to whine about full-time, exclusive pumping. That is tiring. But it is a small thing to ensure that Mary has the food that God designed specifically for her.

2 comments:

  1. I'm sorry that there isn't a quick fix, but I am glad Mary is OK. Hang in there with the pumping...

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  2. Hang in there - sounds like you are doing a really great job so far and she's in good medical hands.

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