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In the midst of all the fun of the summertime… we get to go to doctor appointments (insert sarcastic YAY). 

Tomorrow marks 6 weeks since ME has had the injections/sclerotherapy surgery done. And we do see some results. Not everyone would notice, but we know her face well – her ever-changing yet adorable face that is… but ya know what we mean. They did an ultrasound at the appt we had today (she hated it, as she hates having food on her face when she eats, let alone ultrasound gel and a dr putting a wand on her face). She compared it to the ones she did the day she had surgery and some of the cysts injected are smaller or gone, some are a bit smaller but not enough etc. But the good thing is we DID see results. It could’ve been that she didn’t respond at all, but she did and that is GOOD NEWS so we’re thanking God for that. And even though recovery is rough, it’s better than cutting and ending up with scar tissue and regrowth etc. So this IS a good thing. She said with the size and severity of hers, we still may see more results in the next few weeks (sometimes it takes longer with bigger ones).
The best results were on the right side close to the chin area and the tongue (which I will address momentarily). There is what we call a "ball" in front of her ear. That’s a big one, and it did go down a little, but is obviously still there. We’ll see how far that goes down but it may need another round of injections. It is not uncommon to have to go for injections more than once. So while we were there, we scheduled her next surgery.

Thursday, September 13th. This was perfect for us, because it was after the summer events and her Uncle Daniel’s wedding in September etc. Then we have the rest of September to recover and de-swell from this surgery. At least we know what to expect. The only good thing is, she’s young and we’re doing as much as we can for her before she can even remember this stuff! If there is more sclerotherapy needing to be done after that, it will be held off until 2008 as I have the baby coming and then the holidays etc. And of course she will need time to recover and whatnot so there’s no time to do it before all that.

Wednesday, August 1st she had a previously scheduled Tongue reduction surgery. This was going to be a surgery in which they reduced the tongue in size by cutting. However, since the injections did well with the tongue, we’re going to go that route again for it. But we’re keeping this surgery date- because she does need lasering on the tongue. This is a procedure she’s had before. She bounces back within the same day, it’s not overnight… she does well etc. The lasering is done to the surface of the tongue to get rid of what they call the "vesicles" on her tongue… they look like red blistery/bubbles. These are common with her condition being in the tongue and all… plus her tongue is large causing her mouth to be open more than often and it dries out. So anyway, that surgery is all set.

So even though we have a lot of events and things to do this summer-
we’ve been having a lot of fun. Well, especially ME. Beyond the fun
outside on her "new" swingset (given to us by Andy’s aunt) and playing
with her outside toys… she has been busy running out and about with
me visiting and going to some of our events which are more geared
towards her…

Last week we went to my friend from high school (Brenda)’s daughter’s birthday party. Her daughter, Kasey was at ME’s 2nd bday party. They have a fun time together. Connor was there too, as his mom is also my friend – and we all went to high school together. The 3 of them were really cute together.

Then
that weekend we went to my sister in law’s and she got to play her most
favorite role.. mommy… expect not having to pretend-play. She was so cute
patting her baby cousin Evan when he was upset and rocking him in his
bouncy seat etc. She loved just laying next to him on his play-mat and
everything. And it was fun for her to play with my sister in law’s
dogs. Plus ME really likes her aunt and uncle very much – so all in all
last weekend was great.

After
that fun-filled weekend.. today we went to Music class that I signed
her up for over the summer. (Which happens to be taught by Aunt Rose’s mom). It’s only for about 6 weeks and started
today. There are 10 other kids in the class but I think 8 or 9 showed
up today. ME has been in this type of music class before, with less
kids and when she was a bit younger. However there was a big difference
as she was following it more and having even more fun being independent. Plus being around the other kids was very
inter-active for her. Straight from the class we went to visit my
cousin Michele and her 2 kids. One of her daughters (Madeline) will be 4 in November, the other is 8 months
(Emily, will be 1 in November, as well).
ME
loved playing and running around with Madeline, trying to keep up
with her though of course. She had a blast from the time she got there til the moment she left and they were truly adorable together. As you can see even lunch time was fun:

It’s great to see her with other kids, she really enjoys it and I’m glad we’re getting to do that more.
And
what’s best is we started her in the sprinkler. Madeline showed her how
it should be done and ME had a pretty good time being so new to it and
all. And I must say she looked pretty darn cute in her bathing suit!
I was particularly excited about this sprinkler event because she can’t
go in pools with the trach and all (way too dangerous) and the
sprinkler was a great alternative- it was nice to see her having some
good ole’ summer fun!

The
fun doesn’t stop here. This weekend we are going up to Albany to visit
Andy’s cousin, next weekend we’re going to my friend Dawn’s twin girls’
first birthday party (there will be a few kids her age there too). And
then of course… more to come…. 🙂 – so be on the lookout for the July photos at the end of the month because these cute photos I added certainly do not end here…

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. 

Anyway, a funny thing that happened was that at the hospital she was a cranky/clingy and
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.