22 months!

Posted by Andrew & Jessica on Tuesday Mar 20, 2007 Under Mary Elizabeth

So since I’m now doing this update thing, once a month when the 20th rolls around, I’ll be posting a Montly Update. So she’s

22 months- only 2 more months til she’s 2. I will normally take a photo on the day I post this, but today was hectic. So why not post the cute picture from 3 days ago of her on St. Patrick’s Day? Right? I know you must be thinking what I am… she’s too cute!

I
started the party planning. We’re gonna do it in my house. I’m
currently trying to dwindle the list down more and more because well my
house isn’t that big and it’s hard because I have a lot of people in my
"immediate" family, plus my friends who have children that can play
with her… I just hope it all goes over well.

We were going to do Strawberry Shortcake theme. She does love
her! But I am saving that for next year I think. We’re doing a Hello
Kitty
theme this year. (Last year- Love a Lot Care Bear). Target had
the decorations on sale so I already picked some up. I’m kinda weird
and particular, but I found a toddler bedding set for her, we’re starting to
work on her new room (girly- the nursery will stay there, neutral for
future babies) and this prompted the Hello Kitty theme this year (ya
know gotta have it all go together). Anyway, though I’m doing the room,
she won’t go in there til she’s ready but since I don’t know when that
will be and she certainly doesn’t need more toys than she’s already
gonna get- I’m gonna get all her bedding/bed stuff for her birthday. I
was going to get a plain butterfly & flower theme. But then I
thought- she should have something more toddler-ish. A lot of the
themes are a bit gaudy for my taste so it was hard. But I found an
adorable mix of what I like and what SHE would like.

  So here it is: (Click the pictures to make them larger/clearer)


 

Isn’t it adorable!?! Yep and it still has butterflies and
flowers too! The walls are already lavendar so it works out well. I
ordered it all today as I realized I only have 2 months and it may take
a while to come in. I will not do it til the weekend of her birthday,
so that I can do it all up and show her on her birthday. I’ll put a big
bow on the bed and then get her a hello kitty doll and dvd to go with
it that she can open. That’s my plan. The good thing is, she really
loves cats, (well all animals) but as you’ll notice from a lot of the pictures that I will send at the end of the month, she’s wearing an orange cat shirt. It’s actually
part of a pajama set, but lately everytime she sees it- she wants to
wear it – because it has the cat on it. So that was just extra
incentive for me to go with this theme.

ME herself has been doing very well. She’s doing more and more things
lately and acting oh so cute all the time (aside from a little temper
and wanting her way at times). She is very much the copy-cat. And
mimicks everything. Her new thing is walking around with her nose all
crunched and waving her hand as to say stinky (followed sometimes by
holding her nose). It’s pretty funny!

I’m now reminding myself to weigh and measure her tomorrow so I can put the
information in her growth chart. Check back on that next time you’re in 😉

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Fun in the snow

Posted by Andrew & Jessica on Friday Mar 16, 2007 Under Videos

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Doctors, Doctors, Doctors

Posted by Andrew & Jessica on Friday Mar 16, 2007 Under Mary Elizabeth
So yesterday, (Thursday) we had a full day in NYC. 2 doctors appointments and a whole lotta traffic.

We went to see Dr. Levitin at Dr. Waner’s office yesterday. We discussed ME and what’s next. Basically they don’t plan on doing any surgery on her face quite yet. We’re gonna see how things go with Dr. Bernstein with the sclerotherapy (injections). But that’s considered a surgical procedure still. (I will know more about that when I visit with Dr. Bernstein on the 27th). They are however going to do laser and injections on the tongue/mouth area in between and continue with that (which surgical procedures as well). So the next one has already been scheduled due to the fact that we have an awesome surgical nurse who loves ME and we also get along with well…. (and she’s on top of everything!) The date for that is April 25th. I hope this one goes well. In all honesty, she only had trouble for 24 hrs with the last, and everytime before that it was no pain at all, so nonetheless it should go ok.

Speaking of the surgical nurse, we planned to hang out with her, her husband, and her son sometime in April. Her son is 4 days younger than ME. Should be fun! (See I told you we were pretty friendly).

So then we went to see her ENT, this ENT is supposedly excellent and she works along with Dr Waner sometimes. However she has a horrible bedside manner. This is the 2nd time I was at her office, and she really rubbed me the wrong way. We might be going back to her original ENT who we love. At this point the ENT plays less of a roll because Dr Waner is himself an ENT though he more specializes in her condition and things…. so anything major- he can handle. Anything small, any ENT can handle. So we really don’t feel like we should need to go to her if she doesn’t make us comfortable.

I think we’re changing ME’s trach size from a 3.5 neonatal trach to a 3.5 pediatric one. I guess she’s big enough now lol. It’s just a bit longer inside to accommodate a longer trach as she’s grown. You won’t notice the difference on the outside.

Speaking of growing, it was suggested by both the ENT and Dr. Levitin that we begin to go to a pediatric Endocrinologist soon. So we’ll be looking around for one of those. Yep another dr into the mix. (She already has 5- an ENT, a Gtube dr, her specialist, radiologist (Dr. B), and her regular pediatrician). The endocrinologist will just monitor her growth, as she is behind – most likely due to the steroids…. and it’s possible if she doesn’t catch up she’ll need some growth hormones or something. But I’m not going to assume anything yet, they know only a little about this which is why they want a Pediatric Endocrinologist’s opinion.

Anyway specific things that I can think of to pray for right now would be:
– Successful surgical procedures
– More flexibility in her tongue, less stiffness (to improve eating/speaking skills)
– Growing, Growing, Growing (she’s doing well with it lately, want to keep that up though)
– Finding a good gtube dr (we need a new one and that area needs some attention as it still is a bit red/sore and well just a mess)

Don’t forget now, this little girl is a true joy and happy- running around everywhere as I type this. If you haven’t seen her lately, it’s time to schedule in a visit with us! haha. I know that we aren’t in touch as much as we like to be, bug us anyway though… we’re oh-so busy lately as the family has lots of things going on- both sides…. babies being born, christenings and weddings happening, etc.

THANKS FOR READING 🙂

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Swelling, De-swelling, and more!

Posted by Andrew & Jessica on Friday Mar 9, 2007 Under Mary Elizabeth

So
Mary Elizabeth had surgery on 2/28 (tongue lasering etc). A couple days
later she had swelling in her face, which was not even worked on. Not
really sure why, but thinking it might have been a flare up. (Sometimes
when she’s sick her face will swell a bit, or perhaps when her body is
working hard to heal itself from surgery). It got so bad that her face
was very hard and the next thing we knew she looked as if someone
punched her in the face (that totally didn’t happen). I guess the blood
vessels must have bursted causing this bruising.

No worries though, the swelling went back down. Yes, the regrowth is
still there from before, but it isn’t overly swelled. The bruise is
starting to lighten and she is feeling great and back to her happy
little self.

Though, she’s having some temper tantrums lately here and there.
Welcome that good ‘ole 2 year old stage. haha. She doesn’t have all
that many compared to some children I’ve seen, so we’re ok thus far.
We will probably be starting to potty train soon, but I don’t expect it
to happen overnight. She just seems to understand and be more aware of
when she’s ‘going’. Her potty has been in the bathroom for a while now,
she sits on it a lot, but always clothed. I took her pants and diaper
off the other night to see if anything would happen. Then I got on the
phone (duh!- big mistake!). Had I been paying attention, when she got
up and pointed to her diaper and pants and put her little knees
together, I would’ve sat her back on the potty and encouraged her.
However, she walked near the tub, pulled the shower curtain in front of
her and peed on the floor. HAHA, lesson learned!

Also warning to those who are around her, watch what you are doing,
cuz we have a copy cat on our hands. She copies things we do, which is
very cute. But we just hope those around us keep doing cute things that
she can copy and nothing bad. She does love her Dora The Explorer
cartoon and she copies dances and stuff like that, it’s adorable.

Anyway, She goes to see the radiologist that works with the team at
Dr. Waner’s office at the end of the month to discuss the sclerotherapy
(injections).

She has such great doctors right here in NY that know so much about
something that few doctors know anything about, and we are truly
blessed for that. I will be talking about these doctors a lot so I
figured I’d give you a few pictures to put a face with a name:


From left to right: Dr. Waner, Dr. Levitin, Dr. Bernstein

Dr. Waner is the big hancho, he’s her main Dr concerning her condition.
Dr. Levitin is his partner, participates in her surgeries, we often see
him for follow-ups, and he is a very sweet man who understands both the
technical and emotional aspect of it as one of his twin daughters had a
rapidly growing hemangioma.
Dr. Bernstein is the one that will be handling any sclerotherapy injections and works along with Dr. Waners team as well.

All 3 men are experts and Dr. W and Dr. B are world renowned. Keep
these men on your prayer list. Their continued knowledge is so very
important to so many people. And if you ever run across any child with
a condition from even the tiniest thing to something as major as Mary
Elizabeth’s that is like this… I’d highly recommend them!

And just a side note, if you ever wanted to Donate to their cause in
changing the lives for those who are affected by Vascular Birthmarks
(her Lymphatic Malformation is one of the many types), visit www.birthmark.org. Just had to throw that out there :)

I’ll be back soon, don’t forget to ‘comment’

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Back and up and running

Posted by Andrew & Jessica on Thursday Mar 1, 2007 Under Mary Elizabeth

It has taken us oh so long to get things
up and running on this page. Since November we’ve been quite hectic.
Andy has finally enabled me to have some control over this website, so
with 2 people updating it- it will work out better. We’re still
figuring out the best way to update pictures on here too and stuff. But
for now the update page will be done by me using a blog hosting site.
Soooo since November… ME had issues with the drain/swelling etc after
having had the right side of her face worked on. She had the drain put
back in and it was then removed (by the dr and not her this time) right
before Christmas and she was done with that.
Since then, she’s had some regrowth on that side of her face. Dr. Waner
removed the cysts from the lower portion on the right side, and in
different areas along her cheek bone and a little under her jaw, it has
popped up. We just found out yesterday that she’ll probably be getting
some sclerotherapy done for that.

She had 2 laser surgeries to her tongue/mouth/airway. The first one
went great (in January) and she was up and running all over the house
in no time. They did a lot more yesterday February 28th, and the
recovery has been harder than normal. Her tongue is very swollen, a bit
of bleeding and some pain as well. She’s already doing a bit better
today so we figure by the weekend she’ll be back to herself.

In the meantime this little girl has been such a little smartie pants and doing so much.

-lots of coloring and drawing (with her left hand all the time- we think she’ll be a lefty)
-putting on her own shoes (granted they may go on the wrong feet)
-zipping up sweaters and pocketbooks
-Pretend play is at an all time high (playing ‘mommy’ to her dolls,
using her kitchen to ‘cook’, acting as if she’s really using the phone
even when no one is on it)
-When her favorite tv shows are on she mimicks the dances and things that the characters do
I’m sure that list can be very long, but those are some of the
highlights. She’s so funny too she rolls her eyes at you, she’ll laugh
really loud if everyone else is though she doesn’t know why, she shows
off her ’signs’ for everyone (which I will list below how many she
knows) and she has been very loving too- hugs and kisses galore!

Here is how many words she can do in baby sign language:
(and even puts 2 together or more at a time)
Eat
More
Juice (which for her refers to any drink – be it milk, water or juice)
Please
Thank You
Sorry
Baby
Ball
Book
Cat
Dog
Fish
Bird
Monkey
Elephant
Music
Pray
Play
Cry
I love you
Tree
Up
Down
Jesus
Stinky

OK that’s about it for now. I’ll be posting a lot more, at least a
few times a month. Please note if you click on the ‘comments’ link
below you can send us a message or reply to what I have written here. :)

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