Long overdue...

Hi Everybody,

I don't even know how many people are reading the blog anymore, but I know at least a couple people are... so, I'm sorry!! I didn't mean for it to be this long before I updated again.

Mia had her first swim of the summer two weeks ago and it was so cute!!! Normally, the "vent" babies don't go in the pools, but I protested a bit. :-D So, Mia got a pool!! It was challenging, but I think she enjoyed it! This last week they changed it a bit so the non-vent kids had their swim day on Wednesday mornings and the vent kids were on Thursday! It was a LOT easier and they were actually able to get into the pools, too! Jordie and Juilianna went in the pools, too, even though they already had their pool day, so it was fun watching them play. I think Jordan is around 10 and Juilianna is almost 6. They definitely know how to use the big syringes!! Dr. Silva came out to take pictures of the babies and when he was bending down, Jordan got Dr. Silva's leg soaked!! haha =) (He knew not to get the camera wet!) So, a few minutes later, a nurse distracted Jordan and Dr. Silva ran up behind Jordan and dumped a pitcher of ice water on his head/back!! Jordan thought it was hilarious! He wanted him to do it again! haha =)

Mia really enjoys her swim days! It's so cute getting her all dressed up in her "tankini" - she looks so cute!! She gets really relaxed in the pool and ends up falling asleep! The first week they said it looked like she was waiting for her mani/pedi! This week they said it looked like she was waiting for her massage! They call her Miss Diva! She's the third Diva - Joslyn and Sophia are the first two. =)

Mom said that Mia found her hands!! During one of her visits, she said Mia was starring at her hand and would bring it closer to her face, then all of a sudden grab her own nose! Mom was cracking up! I think she got a video of Mia playing with her hands...

An ENT clinic comes to the Children's Recovery Center quarterly and Mia was on the list to be seen by them. Of course, it was a very quick deal, but from what they saw was that it looks like Mia's jaw is fused shut. Mia was also being very stubborn at the time and wouldn't open her mouth, the little that she can, so I think to them, she couldn't open it at all. I was telling them what she can do, but it didn't seem like they listened. Dr. Silva was telling the other doctors that she's been tested for a bunch of stuff and that just by looking at her, he'd think she had Mobius Syndrome. I'm not exactly sure if she was tested for that, or how you would test for that, but I do remember Dr. Miller and Dr. Piroozi from Las Vegas mentioning that as well. I think one of the doctors at Children's Hospital Oakland said the same thing. One really good thing the ENT said is that they want Mia to start tasting things, so we get to put some things in her mouth! Either tomorrow or Tuesday she'll be having a swallowing test, so be praying! I know she CAN swallow, it's just not all the time. If she passes the test, then she'll start getting her tastes of things.

Since I pump when I'm visiting Mia, I saved just a tiny bit of milk so I could put it in her mouth so she could taste it. Boy did her eyes get HUGE when she tasted it!! I think it was a good response. =) I don't know if she swallowed it, but I know it got onto her tongue at least. =)

The following day, I was talking with the Occupational Therapist saying that Dr. Silva mentioned Mobius and I asked her what that was. She actually didn't know, but she gave me something from Wikipedia, so I read it when I got home. Of course it was kinda hard reading it because I don't really want Mia to have a "syndrome", but at the same time, I want to know what's causing the issues that she's dealing with. It really does sound like she may have Mobius because the main things are expressionless face (basically facial paralysis), something wrong with the jaw, inability to suck/swallow, deformalities of the limbs/hands/feet (her index fingers are very turned in), difficulty breathing, crossed eyes, not moving eyes side to side but moving the head instead.... it really does seem to fit. She may have it along with something else... we have no idea. It could be a start of an explaination!

Well, Robert is now a Captain! He promoted from 1st Lieutenant to Captain last Wednesday! He doesn't think it's a big deal, but I think so. =) Still no word of official orders, but HOPEFULLY this week!! He has a TDY (temporary duty) at Beale AFB (north of Sacramento) at the end of July, so he's planning on being in town in mid-July, so we'll have Mercedes' birthday party when he's in town. He didn't want to miss it and I don't blame him! It'll be nice to see him!

Mercedes turns 3 years old on Wednesday, July 1st! She's such a big girl and is very into Curious George right now. =) She has to sleep with her Curious George books and loves "reading" to herself. It's so cute to hear her read the stories - we'll hear her say "zaa, zaa, zaa, zaa, zaa [part of the story she actually remembers], zaa, zaa, zaa". When she doesn't know the word, she says "zaa zaa zaa" heehee =) On her birthday, we're going to go to the Children's Discovery Museum and there's a new Curious George exhibit! She doesn't know yet so she'll be thrilled!! (I never tell her exciting stuff until the morning of - or I just surprise her! It's easier that way!)

Yesterday Mercedes put Willow (our kitten) on his kitty climber thing and she was reading him Pinocchio (in her jibberish way) and kissed him on the head, said "doodnight Wiwwow. Sweet dreams!"

Last week, Willow was taking a snooze on the couch and Mercedes was playing with Lincoln Logs on the living room floor, then without saying anything, she went up to Willow, picked up his little arm, stuck a long Lincoln Log in his armpit and put his arm back down! She was taking his temperature! It was so funny! =)

Well... I think that's basically what's been going on. Please be praying for Mia's jaw especially, that they would loosen up so she can open her mouth more and so we can work with her mouth to try to teach her to such and swallow.

I'll add pictures tomorrow, but for now I'll enclose a link of Mia's swimming two weeks ago. =)

http://www.facebook.com/album.php?aid=100282&id=614762171&l=5fdf4c6e5e

Blessings,
Rachael <3