www.BabyRaia.com

So we’ve had a bit of ups and downs as any family does. We had a lot of ups a couple weeks back when we went on vacation with our families… but we returned and since then have been on a steep slope going down hill. Yikes!

 Here’s a recap:

"Ray" Mini-Vacation – We went to the Jersey Shore with my parents and
siblings. We had beautiful weather and it was such an enjoyable time.
We went to the beach and the kids weren’t loving the water.. true it
was a good thing that ME didn’t like it- as she wasn’t allowed in it
due to the trach, but I wouldn’t have minded walking along the shore
line with her. But the water was too cold for her liking and it was
intimidating. Same for Drew. So I guess that was a good thing really.
They ended up liking the sand and ME loved making sand castles. Even
made friends with some kids on the beach. Each night we went out for
some fun… whether it was the park they had there with rides, or the
ice cream shop that did a little show with singing/dancing, or walking
to shops etc. We ate out as a family and had a grand ole’ time. It was
great! Pictures shall be posted shortly!

"Raia" Mini-Vacation – We took the laid back and cheaper approach with
staying at Andy’s sister’s house. The kids had fun. We took them to Six
Flags in New England. They went on a lot of kiddie rides, saw two shows
(the wiggles, and looney toons) and hung out in this little play ground
with water sprinklers that they loved. We bbq’d for the 4th of July,
did a little shopping, saw fireworks, and went to a Children’s Museum.
It was a lot of fun for the kids and I know they enjoyed it. Pictures shall be posted shortly!

Then we got back and into the swing of things…. well sorta….

It
was hectic because I went back to work of course and we also took ME to
VBS every evening. Which she loved (we did too). VBS is vocation bible school
at the church. They did such cute crafts, sang adorable children’s
worship music, played and learned many things… oh but of course this
was not without struggle as the 3 year old class was quite a handful! I
stayed to help a bit here and there. It was cute indeed though and I
can see she will love preschool in the fall.

So we were keeping busy, and…

ME’s NEXT SURGERY
was scheduled, but not without a little struggle. They didn’t have any
openings until September sometime. Well she’s starting preschool for
the first time ever in September and I was not happy. I wanted her to
be able to start school with a pleasant experience and not have to be
in the middle of recuperation or jump right into a surgery. They were
going to try to squeeze her in for sometime in August…. but then….
they had a cancellation and we took it. So ME is getting sclerotherapy/injections on July 30th.

Then Friday came and they called me into the office at my job at 11am and told me my position has been elimated.
They were cutting back and now are dividing my work amongst others as the office. This is
much more traumatic than people seem to realize. I worked mainly from
home (hard to find LEGIT work at home jobs!!!) and not many people can care
for Mary Elizabeth with her special needs. And I still need that full time salary.
We’ve been working out things since I got let go from my job and so far nothing seems to give. I keep having to call Andy with the most recent bad news. *sigh* Anywho – without getting into the nitty gritty- the income is now not going to cover what we need and to boot we got an extra bill thrown in the mix when we found out how much we NOW have to pay into for health insurance with the changes made. (Health insurance was previously held at my job). Anyway, It’s quite a hefty sum of money and I’m not sure where we will go from here. Just having faith that God has a greater/bigger plan for us.

There’s been a lot under the scenes but you got the
gist of it all now I’m sure. Stress level is high right now and well- we’ll all take some prayer if you are willing!

….Taking some time from our vacation to wish everyone a Happy Fourth of July!

AHHHHH so hectic!!! Thank the Lord we will be on vacation this week…

Andy
has been at the church almost every night this week doing the worship
for the prayer week- healing services. Then his own band had a show. He
had to teach his guitar lesson and whatnot too. Plus work.

ME
graduated from the little gym class this week, I enjoyed attending
that. She has grown in her skills, tumbling all over the place,
crawling and swinging on the bar plus lifting her feet up on it. She
likes to use her gymnist type skills at home though….

Drew has
been very active. He’s crawling around but in his own way. It’s obvious
he’d rather stand so he gets on his hands and feet instead of his knees
and pulls himself along that way. He also pulls himself up on his knees
and even pulling himself up to stand.

So everyone is busy and
active, meanwhile I was busy trying to work, trying to keep things in
order around the house while running errands with the kids (since Andy
was out a bit) to prepare for our vacation… and I also attended a
couple of the church services.

*YAWN*

And here I am at
1am in the morning posting to say BYE, see ya later!!! We’re going to
the beach for about 4 days with the "Ray" family and then going to do something with the "Raia" family for 4 days as well – staying over at Aunt Michelle’s house. We are taking the kids to Six Flags New England,
see fireworks and do the 4th of July bbq type thing, possibly hit the
outlets or do some other things while up there as well- there’s always
plenty to do out her way within a decent radius.
So our combined 2
mini vacations equals one nice one. And the kids will have a nice time
and so will we…. we need this time more than ever.

Anyway I
tried my best to get the pictures for the website up for the month
of June. I think they are all in the snapfish album. But we didn’t have
time to upload it to the site.

Nonetheless – I wanted to share them, they eventually will be on the site properly, but for now… you can click the link- there are some very very cute ones in there! So make sure you look: JUNE 2008
**NOTE: Snapfish changed their slideshow and haven’t updated it yet to show the captions I put in. So if you want to view the photos with the captions (since they are funnier that way)… click on the first picture (as smaller thumbnail) and then when that opens up larger – click "next" at the top right…. I always do this- then I can look at the photos as fast or slow as I want to. So you might want to try that if you haven’t already.

Yesterday was quite the day… it started out with waking up very early because Mary Elizabeth had her MRI, then Andy had a rough day at the job and was tired from helping me out in the morning, due to getting up early and being in the city all morning-I was tired myself… then things were hectic when I got home and I wanted to get some work done I missed from earlier in the day… but then… at 6pm the power went out and it stayed out til 6:15am this morning. NO FUN. Andy and I were not pleased as this was the 3rd time in a week this happened and it hasn’t happened that many times in the 4 years we lived at the house… *sigh*

And of course yesterday was Andy’s birthday, and we didn’t do much celebrating of course. But HAPPY BIRTHDAY ANDY!!! A wonderful man at 29 yrs old deserves the best so we’ll be taking him out later in the week

OK here’s the update from MARY ELIZABETH’S MRI YESTERDAY:

all went well- she was good and it went pretty smoothly. As soon as we neared the city (after the GW Bridge) was saying “NO DOCTOR, NO HOSPITAL” so it’s pretty much apparent she’s very aware of what is going on that she knows well before we even get there. I hate to have her associate NYC with the whole dr/hospital thing. We’ll eventually have to take her down for a play or something instead. She did fine with the anesthesia and all that though.

Anyway, instead of going back down to the city for a consultation, they had a phone conference with Andy this morning……

They said they saw a great deal of improvement with the spots they injected. So she’ll have some more injections/sclerotherapy to the bigger cyst pockets “macro-cystic”. Remember she does have a lot of smaller cysts which appear big because they are clumped together so to speak. They are “micro-cystic” Those cysts will have to be surgically removed when she’s done with sclerotherapy. They will also do some injections to the floor of the mouth” which is pushing her tongue up to help the size of that and give her room. As for her airway and the most commonly asked question “when will her trach come out”… they are looking to do a little more lasering in her airway and remove her tonsils to free up her airway and that will get her ready for trach removal (decannulation). Once all that is taken care of she will have to have the jaw surgery. All this will take time, but once it’s done she’ll be more settled and the LM will be controlled enough where she won’t be getting repetitive surgeries like this. Perhaps it may take another year, two or three. Not too sure and with this condition it is hard to say because there can be flare ups, or bumps in the road so to speak where complications arise to delay the next steps.
We are of course praying against that and asking God to work in her life for the best possible scenario. So please continue to pray for her and we’ll keep you posted.

I know my two little darlings have one of the best daddy’s ever and I
am thankful for that. He loves them so much, and is good to them. He
helps them have a happy home to grow up in – for a great future.

And Andy is blessed- he’s got two beautiful children who are smart and loveable- how can he not enjoy them??? Right!

IN OTHER NEWS- Here are some updates….

We are going for ME’s MRI in the city tomorrow, so an
early morning. She’ll go under anesthesia for it- so still keep her in
your thoughts & prayers as being under anesthesia should never be
taken lightly no matter how simple the test or procedure.
We’ll be discussing it with the drs later in the week though. So more to come.