Jul 23

Surgery Updates

Posted by Andrew & Jessica on Monday Jul 23, 2007 Under Mary Elizabeth

In the midst of all the fun of the summertime… we get to go to doctor appointments (insert sarcastic YAY). 

Tomorrow marks 6 weeks since ME has had the injections/sclerotherapy surgery done. And we do see some results. Not everyone would notice, but we know her face well – her ever-changing yet adorable face that is… but ya know what we mean. They did an ultrasound at the appt we had today (she hated it, as she hates having food on her face when she eats, let alone ultrasound gel and a dr putting a wand on her face). She compared it to the ones she did the day she had surgery and some of the cysts injected are smaller or gone, some are a bit smaller but not enough etc. But the good thing is we DID see results. It could’ve been that she didn’t respond at all, but she did and that is GOOD NEWS so we’re thanking God for that. And even though recovery is rough, it’s better than cutting and ending up with scar tissue and regrowth etc. So this IS a good thing. She said with the size and severity of hers, we still may see more results in the next few weeks (sometimes it takes longer with bigger ones).
The best results were on the right side close to the chin area and the tongue (which I will address momentarily). There is what we call a "ball" in front of her ear. That’s a big one, and it did go down a little, but is obviously still there. We’ll see how far that goes down but it may need another round of injections. It is not uncommon to have to go for injections more than once. So while we were there, we scheduled her next surgery.

Thursday, September 13th. This was perfect for us, because it was after the summer events and her Uncle Daniel’s wedding in September etc. Then we have the rest of September to recover and de-swell from this surgery. At least we know what to expect. The only good thing is, she’s young and we’re doing as much as we can for her before she can even remember this stuff! If there is more sclerotherapy needing to be done after that, it will be held off until 2008 as I have the baby coming and then the holidays etc. And of course she will need time to recover and whatnot so there’s no time to do it before all that.

Wednesday, August 1st she had a previously scheduled Tongue reduction surgery. This was going to be a surgery in which they reduced the tongue in size by cutting. However, since the injections did well with the tongue, we’re going to go that route again for it. But we’re keeping this surgery date- because she does need lasering on the tongue. This is a procedure she’s had before. She bounces back within the same day, it’s not overnight… she does well etc. The lasering is done to the surface of the tongue to get rid of what they call the "vesicles" on her tongue… they look like red blistery/bubbles. These are common with her condition being in the tongue and all… plus her tongue is large causing her mouth to be open more than often and it dries out. So anyway, that surgery is all set.

I understand that others looking in from the outside are often looking for drastic changes and probably ponder what is going on because they don’t see anything major happening. But this is all baby steps and we have to see how she responds and go with it as the Doctors see fit. The condition is pretty complicated and sometimes those not very closely involved can’t see the success of these surgeries as much as we can. But for example, since the injections- her speech has drastically improved… though there are plenty of vowel and consonant sounds that she still can’t make, the improvement of the tongue has enabled her to make some that she didn’t before and she definitely feels more of the freedom to try more at it. She’s now signing along with making sounds that are very similar to the word or even truly the word she was trying to say. So with that, we are very pleased. Her eating is always improving with that as well.
And of course there’s always the down side to the condition that other areas show regrowth or don’t respond well… but we pray about it and go with the flow. Now if you go back and take a look at past photos from her first few months of life and compare them to now- you can see the big picture and with the help of our faith, we know that this will only get better for her. 

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