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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).

Yuck, Mommy and Mary Elizabeth are sick! Fever, Congested, Cough
etc. Mary Elizabeth however is doing better than Mommy did with it. I
guess with the help of her friends Dora, Diego, Wonder Pets, Strawberry
Shortcake and more! haha. Yea she just wants to sit around so it’s a
lot of tv time. But it’s ok, she’s sick- ya know!

I’m pretty much
over it with just a cold and stuff left over. She should be feeling
better tomorrow and good to go by Saturday. So Easter celebrating with
family is still on…..

However the surgery for tomorrow (Friday)
is cancelled. And we probably won’t reschedule this one until after
Uncle David’s wedding since she’s the flower girl. The swelling could
last for 6+ weeks and it would be cutting it too close as the date is
June 8th. Unfortunately we didn’t know she was going to get sick so we
rushed around doing pre-op paperwork, getting her bloodwork done etc.
*sigh* that’s how it goes I guess.

She still has surgery on April 25th for some tongue lasering.

OK we’re all a bunch of little Busy Bees over here. With "Nana" in the hospital and helping my mom out with that, and ME having all sorts of appointments and photo shoots (haha) we are running around everywhere.

First, I must show you the beautiful Easter photos we had taken. I couldn’t post them all here, but here are 3 that we choose out of them all.

It certainly was hard to choose because she’s just so adorable! We also got her Easter Bunny pictures done…. but our scanner broke and Andy is on business in Las Vegas this week, so once he gets back we can have him scan it at work. She LOVED the Easter Bunny. She didn’t want to get off his lap, and once she did, she kept reaching out for him. Though her fingers were in her mouth for the picture (I think she’s getting a tooth back there) – she was still smiling so it’s a lovely picture!

Speaking of things breaking, our baby scale broke, but the place is sending us a new one. By that time I will have her weight already because she’ll be going to the pediatrician before we get it. But still, I like to have the baby scale so I can weigh her at any time. I’m guessing she’s around 23 pounds. I know she’s just about 30 inches tall now. Which is great (up from 28.5 at 20 months).

Now onto the Dr appointment update and prayer needs…

We had our appt in NYC yesterday with Dr. Bernstein. He was joined by Dr. Burrows, a woman Dr who is also well known and works along with Dr. Waner’s patients. Both of them are experts and BOTH of them will be doing the sclerotherapy for Mary Elizabeth. It’s good that we will not just have one great Dr in the room, but TWO (among their assistants). They are pretty sure that they can help get some of the larger/deeper pockets. Although we have to see if she responds to this…. and how it goes… so that needs prayer.
They will put Mary Elizabeth under anesthesia, drain an pocket of cyst, and then inject it and fill it back up with an alcohol substance which will eventually absorb and cause the pocket to be "pasted" together, the idea is to make it so it can never fill back up. She will not have pain after it’s done (he said the painful part she’ll be under anesthesia for). But, she will have swelling (which can cause discomfort- though she’s pretty good about it). The swelling can last for 6 weeks, going down slowly. Because of this, the fact that my brother is getting Married June 8th and that she’s the flower girl…. we asked for this to be done sooner rather than later. (Don’t want her all swollen in their pictures). So, they went nuts looking in their busy schedules and got her in… and did…. on Good Friday, April 6th. Of course this ruins Mommy & Daddy’s plans for their 5th anniversary on Saturday April 7th, plus things will be a little hectic for Easter and she might not look her best for picture taking… but it is what it is.
He said he wants to see how she reacts to it and how she does with it. So we need to plan on staying overnight and possibly staying 2 nights (we’d come home on Easter morning in that case- not really IDEAL). So I’m praying that she does better than expected and we can take her home- since she’s always more comfortable there.
He did comment that he’d be starting off slow with this. Once he sees how she does, he can plan for the next one and his plan of action better.

So we need to pray that this works successfully, that the swelling will be minimal, and that she’ll have an easy/quick recovery.

As far as I know she’s also still on for some tongue laser surgery on April 25th as well. If anything changes with any of this, I will let you know.
Thanks for reading 🙂