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Mary Elizabeth did great on Friday getting her gtube removed. It was a short procedure – as the procedure itself took less than 15 minutes, though because of prep time,
the iv being put in etc. – she was in there from 7:45 until 8:20.
Still not bad! Thing is- she was a sleepy head and slept from then until 11ish, So mommy and daddy spent a lot of time staring at her in recovery!!

When they were bringing her into recovery, we talked with the Doctor. He said her hole was REALLY big and stretched out. We knew this-
as that was what caused the leaking… leading to soreness/redness – a horrible rash with some bleeding at times and thus pain of
course. Yet he still prefferred that the hole would close and heal on it’s own, it would be better for her that way and typically 75% of the time the hole does close completely on it’s own. If it should not, it will close most of the way and the stitching would be minimal.

She has a HUGE bandage that seems "Super-glued" onto her belly and where the gtube WAS is still a bump-
reason is- he had put some special stuff on the area with lots of gauze
as to sort of keep it "plugged"  but without it being inside of the hole so
the hole could still close. So it sticks out a little there, but it helps prevent leaking. The bandage SHOULDN’T come off, but we can’t emerge it in water or get it too wet. So sponge baths for 2 weeks.
In
2 weeks we go back and he’ll take the bandage off and check to see how
it is doing. He’ll decide then if the bandage needs to be reapplied.

He
will give it a couple months to fully close. So far we haven’t noticed any leaking and she’s been doing good with the bandage on. She is very happy and is often lifting her shirt to show everyone and anyone that she now has a bandage and no gtube. So very proud! She’s come a long way and deserves to be proud- we are too!

Seems unreal that we are done with that, we are praying that before long we will be thinking that about the trach too, but only time will tell.

Anyway for now we are enjoying the rest of the summer. Mary Elizabeth though is anxiously awaiting going to School, starting September 14th and also starting Dancing School around then as well!!! We all know that she’s a social little butterfly so a busy schedule is just up her ally!

Drew… well he is now officially, today, 21 MONTHS OLD!
He’s a very active little boy, so he sleeps REALLY well (Thank Goodness!!). He is a happy lil kid though and loves his big sister, they are a bit of trouble when together…. but fun nonetheless. Drew is talking up a storm and says just about everything. He loves to sing along to songs and he has a SERIOUS addiction to guitars. Not kidding there, do not take his toy guitars away from him!!! He definitely seems like a natural, but he does have those musical genes on both sides of the family so that might be why. Soon we’ll be starting to plan his 2nd birthday. Seems unreal!!!!

Wow… been a while since we updated. Sorry for that. I can’t say why we didn’t update in April… but May so far has been the usual fun, yet extremely busy month!

Well on Wednesday, May 20th- our little princess, Mary Elizabeth turned FOUR years old, yep she’s 4!!! We cannot believe how time has flown. She had a great birthday party with all of her friends at a local park with the Disney Princess theme… and yes, she was a true princess herself. It was so much fun!

She is doing great in school- learning lots and loving the socialization. She is doing better with her behavior since we are out of the terrible 2’s and defiant 3’s. But she remains to have that independant and stubborn nature so yes, our little girl can be fresh at times!! She does great with one-on-one things and loves to play games and cards with mom & dad. She, being the girly girl she is- LOVES doing nails together, pretending to do make-up & hair too. She is very into dressing up and pretending, loves pocket books and shoes… she’s just adorable!
ME has tons of fun with her little brother and loves being "mommy" to him. She can be bossy though but Drew handles it pretty well.

We were told recently that if she drinks more milk she can get her gtube out. She eats well and has no problem drinking- I just think she wasn’t as used to drinking as much since she never had a bottle, so she is lazy or forgetful about it. So keep in your prayers that she DRINKS UP so we can get there. We don’t want to remove the gtube and then have her lose weight, she’s a peanut and a little skinny minnie as it is. Her dr appt was today and she’s 28.5 lbs and 37 inches. Growing fine on her own little curve she has been. We just need a little more weight on her!

Drew just turned 18 months old today- yep he’s a year and a half old!! He’s QUITE a handful. Active as can be, a true BOY, climbing and
exploring and getting into all sorts of stuff. He laughs when you tell
him "NO" – even if you are very stern and serious about it! But he’s
fun and adorable too, very affectionate and cuddly. He likes to play
with his toys and is still very inquisitive.
Drew just loves his big
sister and when they aren’t getting into trouble together there’s a lot
of fun and laughter which just really puts the joy in the household.
He
is learning lots and saying lots. He says more words than I can count.
You can tell he really wants to talk, he’ll babble and make arm/hand
gestures while he tells you a whole story. So once he starts talking in
sentences, I don’t think he’ll ever stop. At this point he’s putting a
couple words together here and there which is right where he should be.
Most of the time he’s saying "Get Down" to himself – he says it before
mommy can!!!
Andrew loves to be outside, and will often be upset
when you take him in. He loves his little power wheels and playing in
the sandbox with his sister (or throwing sand on top of his head).
Anyway,
he too had an appointment/checkup this week and he is now 25 lbs 3oz
and 30.9 inches tall. Growing nicely- as we’d expect, since the boy can
eat!!! (Especially if it’s pasta of any sort!)

So all in all we are doing well, have our hands full but are having lots of fun. The kids are enjoying the beautiful weather and being outside. We have some nice summer plans set up and are looking forward to that. 

On another note, Mary Elizabeth’s surgery it is this Tuesday May 26th and she is having Sclerotherapy done again. This as you know can be a biggie with swelling issues etc. So keep her in your prayers and of course the Doctor as well who is performing it (Dr. Bernstein).

Lots of Dr Appts were going on here….

Andy: He ended up recently with a touch of the flu (along with ME who recovered just fine). His caused a sinus infection and double ear infection. His ear infections got so bad that his ear drums ruptured – BOTH of them. He ended up one night in the ER with his ears bleeding and found this out. Which got him a ticket to see an ENT dr. Since then he is doing and feeling a lot better, his ears are just gonna take a while. So if you see him and he doesnt appear to realize you are talking or hear what you are saying, it’s because of his hearing being affected for a while (Dr says at least a month, or two). So we’re all repeating ourselves 2-3 times around here for now 😉 Otherwise Daddy is doing well and busy with work and musical endeavors.

Jessica: Not as big of a deal (well most likely not). But ME found a ‘buggy’ on mommy’s back. And sure enough it was a tick. (Which freaked mommy out big time!!) So off to the dr with that and they’ll do bloodwork to be sure nothing is up. I’m sure its not but I didn’t save the tick- oops. All in all Mommy is fine and doing well, other than being hectic and running around all over the place.

Drew: He went for his 6
month check up with the eye dr and his "lazy eye" which was hardly
noticeable before (only noticed when he woke up from a nap)…. is even
less noticeable now. I rarely see it at all. The dr said it improved
and he barely can even call it lazy eye but it’s there a tad so we’ll
see him every 6 months just to check it. Drew is also doing well and being absolutely adorable as ever. He seems to be learning a new word everyday and is babbling a lot! So cute!

Now for the biggie….

Mary Elizabeth: she just saw her
radiologist in NYC this afternoon. I cannot express how fond I am of
this man and amazed at his knowledge. It helps how great he is with
Mary Elizabeth too. Anyway, Dr. B says she’s getting a lot of good
results from the Sclerotherapy and wants to continue with it. He
scheduled us for May 26th for her next one. He wants to tackle the
floor of mouth area, a little chin and cheek perhaps. He decides for
sure as he is doing it with the ultrasounds. He put a picture up of her
before her first sclero, and one recent one we sent him. Amazing to see
how far we’ve come. These are different pictures and not the exact same
angles and whatnot but the first one is from a few days before her
first sclero (back in June of ’07) and the other one is from this past
St Patrick’s Day. While it is 2 yrs apart that is because we have had
to space the sclerotherapys out a bit. And we had a huge break back
when I was pregnant and Drew was first born.

Now
sure she’s grown in 2 yrs. But the difference in her cheeks and the
sides of her face etc is great. She has definition around her chin
area, more around her mouh and you notice her nose more because its not
surrounded with cysts.
While it does seem that her chin is more
pronounced or "longer" that’s because her face isn’t as wide as it used
to be so we notice it more… and she has grown. The future jaw surgery
will help push her chin back instead of outward. Also apparantly she
has a bit of scar tissue in there they will have to remove.
We are glad that she has had results from this and are looking forward to seeing more.

Aside from that she has a small dental procedure in the OR on April 2nd. So we pray that goes well too.
And
all in all she is doing quite well. We are amazed that she is going to
be 4 yrs old soon. She is cracking us up left and right with her witty
comments and all-knowing ways. She’s such a cute little smarty pants!

Hope everyone had a good day!