www.BabyRaia.com

Mary Elizabeth is now officially 3 1/2 years old. She wishes it was her birthday, as it seems everyone’s birthday is lately and she has to wait a whole nother 6 months!!!!

Anyway, I must admit 3 1/2 is better than when she was 2 1/2. But we still have our battles. Over all she’s pretty good. She’s just very independent which can be a very good thing…. but she also thinks she’s the boss… which isn’t a very good thing.

She is doing great in school, she loves it completely. She does well in the class as she’s quite smart. She learned a trick in putting her own coat on (puts it on the floor upside down, arms in and throws it over her head). She cuts things non stop as she learned how to use scissors. I suppose she could’ve done it before if I let her… and now that she likes to do it, I have kid scissors at home. It was nice… until she cut up things she wasn’t supposed to – like someone’s card we got for their birthday right before we were about to leave! Oye!

She helps out a lot with her brother, getting him things and entertaining him. Sometimes she can be overbearing to him, but they really do love eachother. She is always asking to help out. Loves to cook and sort of pretend to clean… (wiping things with paper towel or sweeping).

She is always singing different songs, or making her own up and loves playing with toy guitars and drums. She is quite the little musical girl. Recently she was at her father’s show with us and got on stage with him!!! It was sooooo very adorable~!

She has a great imagination, as she has her imaginary friend. She sometimes will pretend to be in school and tell the kids what to do as if she was a teacher or something. She still loves dress up and to play with her dolls. She puts them to bed, dresses them over and over again and changes their gauze (as we change the gauze around her gtube every day as well). She also likes to put us to bed. Me, her grandmas, my brothers and so on. She’s quite the character.

As for her condition…. the upcoming surgeries are as follows:

December 11th- Dental Surgery. Not sure what will happen yet, but we are certain she needs work. One of her teeth are bothering her and another one at the top seems to have some decaying going on. Once again, this is a battle for her as she doesn’t have much, if any, saliva due to the malformation in her mouth. Also things get trapped in there from the lack of room and trouble chewing and eating. So she continues to see the dentist every 6 months and usually we juts go straight to the OR so he can clean and fix whatever needs to be done. We are hoping that when she is older we’ll have a better solution for her and well as we know adult teeth are a bit stronger. We heard about a spray that can act like saliva. We are researching this but so far have found its not good for children.

February 10th- Sclerotherapy. This should be her last sclerotherapy. Basically the injections are only good on certain cysts so they don’t have a lot left to do with the injections. We have seen some good results with the sclerotherapy, and some that we can’t see (deep pockets inside) have also been taken care of due to this so we are fortunate that it has worked well for her. The dr did note that some areas where the cysts were have a lot of tissue (scar tissue and fatty tissue) in it’s place which can be taken care of in the future, as sort of a plastic surgery when they smooth out things. But this will be when other things are taken care of.

So soon she’ll be going back to Dr. Waner. Some things we know will happen is she will definitely have some surgeries where they will have to do some cutting, which I’m sure will mean a drain- which I’m sure she won’t be happy about now that she’s older (haven’t had one in a long time). She also will have her tonsils removed at some point to create more room in the airway. And well that big jaw surgery will be in the future as well (around age 5 from what I know). So more to go, but as you know she’s a tough little cookie and a happy little girl with lots of love and prayers surrounding her always.

3 1/2 years later, she’s still one of our greatest blessings!