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Just a little update on how our babies are doing…

 MARY ELIZABETH: She’s doing well, very independant but a happy, loving child. She’s been very vocal lately, especially when bored or by herself. Sometimes when a bunch of us are in the car talking, she talks louder to try and "talk over us". I think the more she babbles, the more words she realizes she can say. Still has trouble due to the tongue, but hopefully with surgeries that will improve.
Speaking of surgeries she has 2 coming up. Keep her in your prayers:
June 12th- this was postponed from April 6th. It’s the sclerotherapy injections. The proecdure is under anesthesia where they drain one of the larger cyst pockets and then refill it with an alcohol substance which will cause the area to swell for some time, and then hopefully collapse and cause a ‘paste-like’ substance which will close the pocket and keep it from refilling back up. We aren’t sure how she will respond to this or if it will do the trick. So prayers are needed that this will be successful, because if it is- then we can do it to more areas and keep the ‘cutting’ to a minimum. Not to say this surgery isn’t a big deal, because it is as any surgery is. We will be praying that she will not have any pain, the swelling won’t be too bad and that she will recoop quickly (as she most often does). We’ll stay overnight for this surgery.
July 11th- this is another tongue procedure. Not a laser one like we do often. Another tongue reduction so to speak. They are going to work on tackling the "height" of her tongue which makes it appear very thick. As you may have gathered working on the tongue has been a battle, though she’s come so far, lots of baby-steps are needed. But she’s proven that with each step comes improvement. So we’ll pray for her strength through this surgery too.
That should be it for a while, as we have the weddings and all. Her Uncle David is getting married on June 8th and her other Uncle Daniel is getting married on September 1st. Very exciting as she is the flower girl in both and well she loves her new aunts very dearly. We can’t wait to see her up and dancing and charming everyone at the weddings!
I hope that you’ve gotten a chance to view the pictures that I posted up. Sure, there are a lot- but they are worth viewing 😉

BABY RAIA#2: He/She is doing well too! We got to see the baby on an ultrasound recently and the pregnancy is progressing well, growth is right on track with the due date (December 4th) and well I’ve never seen a baby so active on the sonogram before. Mary Elizabeth was often active, but would stop for a breather every once in a while and give us a good picture. Now this one, didn’t want to sit still for even a second! Does that tell me something— like I’m gonna have my hands full???
With Mary Elizabeth I started to feel her first little movements around 16-17 weeks. My placenta was anterior (in the front) with her, so everything was a bit ‘muffled’ til she got bigger. This one, I just felt the other night (13 1/2 weeks). It’s very random and rare right now… but I have felt the fluttering when relaxed and really paying attention (and after eating something sweet). 🙂
If everything goes right, we are electing to do a VBAC instead of a repeat C-Section. We pray that is God’s will but whatever he has in store is just fine. Most important is the health of the baby.

Anyway- here’s some pictures from the sonograms.

11 weeks

13 weeks

Mary Elizabeth is officially 2 years old. We had her 2nd Birthday party today. It went great, the weather held out, she had fun with everyone and just really enjoyed the day. I kinda watched as people played with her and she ran around making her silly faces, and being her charismatic and charming self. I was in awe of how cute she was and how fast and much she’s grown. It was good that I got to sit back and reflect a bit. I really believe though she’s gone through so much in her 2 little years of life, she has touched so many lives and gotten closer to people than most 2 year olds would. And though, I do have to say- even though she’s got a bratty streak that started as she entered toddler-hood… it’s still cute & funny… like for example when she shakes her finger at you to tell you "no, you don’t do that" or things like that. Speaking of "no"…. That has become a verbal part of her vocabulary. Not too long ago she was only saying mama or dada. Now we’ve added the words: more, no, bye, yay, yea, hot and map. (Map because of Dora the Explorer). Though some of those are said seldom you will hear her say Ma or No on any given day. She still learns lots of sign language but we try to tell her to use her mouth too, and with the surgeries- comes more and more so it’s good to see improvement. I think though she is amazingly expressive often dramatizes her emotions which makes it cute.
I recently had to answer questions for an evaluation with Early Intervention and she has to keep asking developmental questions until I start answering "No, she can’t do that". Apparantly she was definitely in the 2 1/2 year level cognitively and I answered yes to some questions for even the 3 year old level. So nonethless, speech is still her only issue which is only due to her condition making it hard for her.
Mary Elizabeth got a lot of cute gifts for her birthday. She got a rocking chair with her name painted on it, a bubble mower, a pink t-ball set for toddlers, a tricycle, a mini power wheels, a table/chair set, lots of great clothes, a bowling set, a little people farm toy, play food for her kitchen, etc etc…. and of course her new room from us. Which she absolutely loved. The bed was like her new favorite toy. Of course jumping on it was the best, and we told her to go to bed and she layed on it for a while. Though she just liked laying there, and didn’t sleep hahaa. But hopefully she’ll get use to seeing it, then we can try naps in the future and eventually sleep in there- but I won’t push it til baby time gets closer as she is always hooked up to things and that well- makes me nervous thinking of her walking around with her feeding tube in and her oximeter on her foot!!! So we’ll get there eventually. The room does look adorable though.

Anyway, this birthday girl was pooped from the long day, that she truly enjoyed and went to bed early. I, though usually don’t do it- rocked her a little to sleep, just because I wanted that mommy time tonight. It was nice- some days I still can’t believe I’m a mother, let alone that I now have a 2 year old daughter! We are so blessed!

So, No one should ever have to get up at 4am and hurry up to get out of the house, it’s just an icky hour -especially when you had to work late the night before. Argh! 5am is the time we had to be on the road and head down for her Surgery this past Wednesday, *sigh* I just wanted to sleep in and so did ME…

BUT…

Surgery went well, they didn’t have to go as agressive with lasering, it was some clean up in her mouth basically, and to take care of some spots or ‘vesicles’ that have popped up. OK I don’t really know what a vesicle is, but I know what it looks like when he points it out. I just looked it up… here’s the definition:

Anatomy: A small sac or cyst, especially one containing fluid.
Pathology: A serum-filled blister formed in or beneath the skin.

Also, he did 2 steroid injections in a couple areas that seemed to be swollen on her face. So hopefully that will do some good. Anyway, other than some cranky-ness ME is doing really well. But they said next for the tongue, is a more invasive surgery (cutting/a resection) where they are going to tackle the ‘height’ of her tongue as it’s very ‘high’- hard to explain but it’s what keeps her mouth open and it will bring us one step further to reaching a blockage-free air passage.
With that, we discussed trach removal… it’s in her future, but again he’s said that before. Each surgery just brings us a step closer. Of course, there is waiting between surgeries, so when we say closer- it could even be a year. So my goal and prayers are for it to be out before her 3rd birthday. We shall see, I thought it would be out by her 2nd… and that went down the tubes
The other thing pending this trach removal, is the mass that is under her chin/neck – they are afraid if that swells or anything when they do injections or surgery on it, it will make her trachea collapse. So, we need to take care of that first.
And we are still waiting for Dr. B’s call-back on the scheduling on the injections (sclerotherapy) – hopefully in the beginning of June (right after wedding #1 on June 8th).

Over and out for now, I’m EXHAUSTED!!!!!!!!!!!!!!!!!!!!!!!!!! …which by the way is not only due to surgery, but I was up really really late over the weekend preparing for Rose’s (my future sis in law/David’s fiance) shower on Sunday. Which was great as you’ll soon see, but I’m pooped.

OK guys, please explain to me why the months fly by? 1 more til she’s a whopping TWO years old!!! But not quite yet!
As for what she’s been up to, well lots! She’s pretty busy for an almost-2yr old! She obviously has been having fun dressing herself (or trying to) and then messing up her hair while she’s at it!! haha.

She recently has been jumping a lot, with two feet in the air. She thinks she’s so cool. She joins in on converstaions as if she knows what you are talking about- laughs along with you and nods her head. She is still big on pretending- like she’ll pretend to take something out of her pocket, pretend to hand you the invisible item and have you eat some of the invisible item (it must be food). Along with that she’ll eat some as well. hahah! We found out on Easter she’s even MORE into presents than she was in the past. Gets very excited! So her birthday should be loads of fun…

….speaking of which, we are busy preparing for her birthday. We are having 2 parties at the house, since my house isn’t big enough I had to split it up. The day before her birthday is Saturday and that day will be my friends and her friends party! Where we’ll have some friends of ours and well some friends of ours that have kids! That should be a lot of fun! Then on Sunday we’ll have more immediate family over for another celebration (though immediate- it’s still a large group).
I am hoping for good weather both days, as on Saturday our friends are bringing the air castle again and then on Sunday, well it just would be nice to bring her outside and have people have the freedom to go in and out.

Anyway, so that’s pretty much it for now- other than of course her surgery on April 25th. Another laser procedure on her tongue/in her mouth. Hopefully all goes well and I think we’ll be on a surgery break til June due to many events we have going on… (June will be the one postponed from the beginning of the month when she was sick).