Friday, October 10, 2014

Maggie News - Some Updates

Hard to believe, but it's been over 6 months since Maggie's big surgery!  I never dreamed she would look this good.  Since it has been 6 months, it's time to have a round of follow-up visits with several doctors.

We saw her surgeon yesterday. He's so pleased with how she looks!  He said eventually he'll touch up her lip and her nose, and for now we're supposed to massage her upper lip area to help loosen it up. It's still pretty stiff.

Long term, there are some possible surgeries that could happen if her speech doesn't evolve on it's own with speech therapy and practice.  He said something about a possible "palate lengthening" surgery if needed. It's not always necessary for cleft kiddos, but a possibility in a few years if needed.

We know that sometime around the ages of 5-7 years, she'll need some major work and surgery. She may have an extender put in to wear for a while to try to widen the top of her mouth. Then she'll have a big surgery in which they'll do a bone graft to fill in where she is missing bones and gumline on the top and do some of that nose/lip touching up.

She also has a lot of dental work to come.  On the outside she looks amazing, and her palate looks great as well, but dentally she will need a lot of help.  Her teeth are pretty wacky on the inside! But he said they don't do things like that until her mouth is given a chance to grow and develop on its own.

So for now we wait and see, and go back in another 6 months to check in.  Everyone there commented on how she has grown and seems more content.  Always good to hear.  :)

She also had her 2 year checkup this week.  Small but mighty is such a good description for her!  Her height is finally on the charts!!! When we got her, her height was WAY below the growth chart, which was a little concerning.  She's finally ON the chart for the first time for height, coming in at 5th percentile.  So she's getting a little taller.  But her weight was around 10th percentile 6 months ago, and now it's around 5th percentile as well.  Probably because her body has been focusing on getting taller, now her weight needs to catch up.  The doctor isn't worried; we know she'll probably always be small. It's just something to keep an eye on to make sure she's still growing, albeit at her own pace.  We go back to the peds in 6 months for a growth check.

I looked back to see what my other 3 kids weighed when they were little.  Turns out all 3 of them weighed what she weights now (not quite 22 pounds) when they turned ONE and she just turned 2.  :)
We've started putting her in 18 month clothes, even though they are a little big.  It was just time for a change!

Otherwise, she is doing awesome. Developmentally she is catching up and amazes us every day with what she can do and understand. Speech will be out long-term battle.  It's very slow-going, although she can say things like "all done", "see ya", "the end".  You have to know what she's talking about, though, otherwise you can't tell what she's saying.  And she's finally gotten the hang of calling me "momma" and let's just say she uses it A LOT.  She will yell at me from across the house when she can't find me or wants to show me something.  "MOM!! MOMMA!!"  It comes out like a grunt-y demand.  It's pretty cute.   She also is using more and more signs,which is awesome.  However , she mostly uses them only when I prompt her; we're trying to encourage her to sign whenever she has something to say, rather than showing frustration and then me prompting her.  She'll get there.

We continue with Help Me Grow every few weeks and speech once a week. She also will see the ear doctor, eye doctor and dentist here in the next few weeks for follow-up appointments with them as well!

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