Sorry we went MIA for a bit. We were even late on updating the photos for the month of July….

But you see, we were a little hectic at the Raia household. Mary Elizabeth has been recovering from her surgery on July 30th.  The time in the hospital wasn’t so bad - she seemed good and her swelling didn’t appear to be too bad either. But as we’ve learned it’s day 2 that shows the most swelling and it’s day 3 that she is the most uncomfortable. Well day 2 showed a lot of swelling but sure enough she was playing and doing alright. Day 3- she was still really swollen of course, but also really uncomfortable and having a lot of trouble. For a few days she was having a really rough time. Her tongue was so swollen she couldn’t eat or talk, and she was having trouble sleeping because of how awful she felt. She was on tylenol with codeine but that didn’t even help totally.

All in all it was not easy but eventually she didn’t need the tylenol with codeine (just motrin) and slowly her swelling came down. As it stands now she does have some swelling but not too much, just some in the areas they injected and her mouth a bit too. But she’s able to eat, talk and sleep. And yes, she’s happy and not uncomfortable. Phew! We really hate seeing her like that so it’s a relief that she’s feeling better.

She will have a follow up visit with the Dr in about 6 weeks and as we know we can see improvements from this surgery up to 3 months from now still. Keep her in your prayers.

In the meantime, enjoy the July photos.

So the surgery was yesterday, and we left the house at 5:30am with our 2 kids. So much fun! On the way down she started to get upset- the whole lip quiver and saying "no hospital" and "wanna go home". I felt terrible. We got down there around 7ish and by 8:30am they have me bring her in. She was sooo upset, not as tantrumish as normal- just really upset and scared… she knew what was coming. She remembers She’s older now.

ME got out of surgery around 11:30. She looked pretty good after surgery. She was sleepy and slept most of the day. Even when she woke up she was pretty groggy.

The Dr came and told us everything went well. They used the "new to us" sclerosing agent we’ll call "B" and they also used the old one, we’ll call "D". She used "D" for the deeper and larger pockets of cysts. And "B" for the smaller ones because it has been successful in getting some of the smaller ones. We’re hoping that it has some good results because that would be great. Always keep in your prayers that any side effects are non-exsistant.

As always they tell us results can be seen in 6-8 weeks. But with ME it’s always been more like 3 months to see the true final results. So we shall see in time.  

This was the first time her daddy didn’t stay over with us. She was sad not to have him but he couldn’t keep taking time off. The good thing was ME was in a big girl hospital bed. And since she’s a peanut, there was plenty of room in the bed- so she had mommy right by her side most of the time. She loved having me there, and it made her happy.

Morning came and she was feeling a lot better, more awake and aware. But a bit more swollen too. I’ve seen her swelling worse, but it’s still pretty bad. And once again it’s been hard for her not being able to talk or eat by mouth (due to her being so swollen). But she’s a trooper. She was very excited when we were discharged and walked with me right out of the hospital and down to the parking garage. We got out of there nice and early so we were home just before noon.

Since we’ve been home she’s been up and about the house- playing with her toys and whatnot. So she’s in pretty good spirits considering.

Thanks for all the thoughts and prayers- keep em coming… we hope to see great results.

At 5:30 am our little family will be heading down to the hospital for another surgery for Mary Elizabeth.  She will be getting Sclerotherapy/Injections done. This has always proved to be a hard surgery recuperation-wise with the swelling/discomfort and it interrupts her life for a bit since she’s swollen in her mouth area as well- so talking/eating become difficult.

They will be using a different sclerosing agent this time around and we’re praying for good results, less swelling etc. Please join us in prayer for her. As she gets older, she’s more and more aware so it’s all a bit more tough on her.

We will be back with any updates and information we have.

God Bless.

Our little man is 8 months today! He is now 18 lbs 2 oz and just about 26 inches in length. He’s so adorable and a lot of fun. He’s growing and learning everyday.

It seemed that as soon as he turned 7 months he started a whole new set of tricks and skills. He has also kept us very busy and hasn’t stopped since. You see, he started full blown crawling (no more of his own versions) and he took cruising to the next level as he wasn’t just standing or even inching his way anymore, he’s walking right along couches and other objects pretty fast now… just moving along like it’s no big deal. So yes we have a crawler & cruiser over here. Which means he’s into EVERYTHING. Every wire in the house, book, phone, remote control, LAPTOP, and even every one of ME’s toys.. he wants and grabs for… and if it’s food- you better really watch out! haha. He’s funny though and it’s cute to see him explore. It just keeps us on our toes.
Ya know with your first you are like awww and can’t wait for them to walk and stuff… but right now we’re thinking- hey you- stop doing that, just be a baby as long as you can!!

Along with that, he’s babbling up a storm. Around 7 1/2 months old he started waving and it’s gotten better and better since then. He’s got a great cute wave and will accompany it by saying hi… it comes out more like "h aaahhh" but I know he’s saying hi because he does it in the same fashion we do- tone wise and whatnot. It’s adorable when he does it! He has also been caught saying hi to some of ME’s cartoon characters on tv!
In addition to babbling though he still likes to scream here and there, and not just when upset, for fun! It makes us crazy at times though.

He’s always laughing and loves peek a boo as he has for a while. He loves to laugh with his sister. He likes when we come in his room after he’s had a nap and he peers over the bumper and then lifts himself up. He gives us a huge smile- so happy to see us.
Along with that, he doesn’t like to be left alone and will often cry if I leave the room now. Nothing traumatic though. Sometimes I play with him and make him crawl to come and get me and he’ll come and follow of course.

He’s so sweet, and rather cuddly too. I just can’t believe he’s growing up so fast… I should be used to this by now since my baby girl is already 3… I just want to slow time sometimes though! *Sigh*

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.

 

Time is flying. Drew is 7 months old now. 17lbs 10.5 oz, and 25.5 inches short (hehe)…

His new tricks in his 6th month were standing by couches and holding on to toys while standing. He even pulled himself up to a stand a few times, had fun doing that on ME’s bed and jumping up and down on it. We’re trying to get rid of the "on tippy toe" thing he’s been doing. He’s not full blown crawling yet, but he’s doing an inch worm type of crawl instead. He can get on all fours but ends up goin down and pushing off of his feet. He’s not on the floor a whole lot- he wants to sit or stand… ME was just like that.

He has become quite the piglet - eating everything like you were starving him for days on end. And so far there’s nothing he won’t eat- even the green veggies! Drew is playing more with toys, very interactive, and yet pulling and grabbing everything in sight. Then of course chewing on everything… and drooling too… STILL NO TEETH though- just a bit of swollen gums.

He has been babbling a lot and saying "dadada" yea… I think dada will be his first word. Who cares- it’s cute! Along with the babbling is screaming. He loves to scream- like not just when he’s upset- but when he’s excited or happy too. Screaming so loud!!! It’s funny… but NOT at 7am!

He’s adorable, cuddly and loveable though. Really a good baby and sleeps very well. Pretty much from 7:30pm to 5:00am then nurses in his sleep and stays asleep til 6:30-7:30 depending on the day. He’s in his own routine and does well with it.

Drew has a little bit more hair… it’s growing ever so slowly. I didn’t have much hair as a baby either. Unlike ME and her daddy who had so much dark thick hair!! His hair is also getting blonder… hard to tell in pictures, but you can really see how light it is getting in person.

He still adores his sister even though she sits on him, takes all of his toys and hugs him just a bit too tight - hahaha. It’s OK - he gets her back when he pulls her hair!!! He loves everyone- and so far does really well with other people… but our house is like a train station- so my kids get used to many different faces a lot.

IN OTHER NEWS- we got a new family vehicle… definitely a FAMILY vehicle. Yep a mommy van… argh- I was fighting getting it… but with gas prices a big SUV was out of the question. Oh well… it’s very nice… Town & Country Mini Van- nearly new at 1 yrs old with 12,000+ miles.

We are soon going to work out the details of ME’s next procedure, will keep everyone posted…
 

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.