Hope everyone had a happy and safe Independance Day! Mary Elizabeth had
a blast as always! No real update tonight, just showing off Andy’s nerdy-ness with this picture… and ME’s cuteness too!!
Mary Elizabeth had a rough week since the surgery. She really did try to be her normal self. She danced, she played… but she also rested her head on my shoulder and cried. Tylenol and Motrin were her best friends. She didn’t sleep all that well, waking up from discomfort that the swelling caused.
We’ve been taking pictures of her every day, forming a time line for the Dr to review and us as well. Right now we are following up with her Doctor via email (gotta love modern technology). We have a 6 week follow up visit on July 23rd. Around 6 weeks is when we should see results from this.
Her swelling has been going down, slowly… but she’s still very swollen. If you saw her now, you’d probably think WOW how swollen. However to us, she looks pretty good- just compared to what we saw upon coming out of surgery and whatnot. At first she couldn’t smile at all because of the swelling, it’s also slowly coming back, crooked right now because the swelling on the right is worse than the left (more pockets on that side). Eating and drinking are still hard because her tongue is still swollen, but again that’s going down too.
Again, lots of prayers that this all works well for her and that we keep seeing improvement every day.
As mentioned in the last update, we were going to postpone her surgery previously scheduled for July 11th. We did that and it’s now August 1st. That is a tongue surgery. This isn’t a laser procedure as many of them are. The Laser procedures are fairly easy on her. This will be a resection of the tongue where they will actually do some cutting. She’s had 2 of these before in different ways. They weren’t as easy as the Laser procedures, but then again she did really well with them too. So we are hoping for the best with that. God willing the injection on her tongue will have helped a lot so they won’t have to do as much as they thought.
Backtracking for a moment, she was the flower girl in David & Rose’s wedding on June 8th (right before surgery) and the little girl did NOT GET OFF THE DANCE FLOOR FOR MORE THAN 30 SECONDS AT A TIME. The little social butterfly/party girl had a blast. And it was a really beautiful and wonderful wedding.
She’s such a fun-loving, happy child. And that is truly a blessing.
Not before long the end of June will approach and I’ll be posting pictures. Of course there will be a lot less this time around as with the surgery, other than updates for the doctors, there was not much time for the camera. I’ll be looking forward to posting again with some happy and fun things to talk about 🙂
After 3 1/2 hrs of her being in the OR – we got to see
her….
And here’s the basics:
Her face is quite swollen, so that is making her uncomfortable. This was not an easy surgery to say the least but she slept a lot yesterday and is doing better today. Tylenol or motrin are doing the trick and
she’s quite her normal self. A little more calm however, but that’s OK.
They were able to inject quite a few of the pockets on the right & left sides of her face, plus in her chin and also in the floor of her mouth/bottom of her tongue. The swelling will take a while to go away but should improve slowly but surely everyday. The results of this surgery won’t be seen for about 6 weeks or so as we were told before hand. Prayers are still needed that the injections worked the way they should’ve and resolve each pocket they injected. Results vary from patient to patient and
depending on the condition and severity etc, so we need to see how this works for her.
wouldn’t be put down- then, upon exiting the hospital to walk to the car she
decided to dance and run around… her excitement as we exited the building made it apparent that
she wanted OUTTA THERE! (I have to say we felt the same way!)
Her surgery on July 11th needs to be postponed a few weeks, so we’ll be awaiting
a new date (they just want to wait to see the results before they do work on the
tongue because as mentioned the tongue was injected as well- so it may affect what they plan to do).
We’re all pretty tired so that’s about it for now. We’ll keep everyone posted.
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!
