www.BabyRaia.com

We had a great Christmas, and hope all of you did as well. The kids got lots of great presents from Santa, and our loved ones. And then we moved onto New Years.

Reflecting back on 2010… we saw some ups & downs- like any year. But, it’s the blessings that we were counting. We’ve gotten closer to some friends, made some new ones, connected with LM families, had some great times & fun with the family and best of all, Mary Elizabeth got her trach removed after 5 1/2 years. You can’t beat that! We thank God for every day we’ve spent together as a family and we are looking forward to seeing what 2011 brings us.

With that, we’ve already seen that Mary Elizabeth herself is going to have some new experiences. One in which she just experienced – riding the bus. Who would have thought that riding the bus was that big of a deal. But back in September when it was her first day of school and she eagerly awaited the bus, it was then we had to let her down because there was no nurse on that bus (as there should have been). Mommy has been fighting with the district to no avail. They simply could not find a nurse to ride the bus with her all this time. So after the trach removal we scheduled a meeting because obviously she no longer needed a nurse. That meeting happened this past week and finally she RODE THE BUS! Seems like such a small thing but it meant the world to her so we were soooo happy for her!

And we all know what will eventually be coming as for new experiences…. SWIMMING!!! Now that she no longer has a trach, we can take her swimming – for real! The hole that was left over from her trach being in place has been closing but there is still a very small hole that remains. It hasn’t really changed much recently, so the Dr. has scheduled her to come in on January 24th into the OR and stitch it closed. So swimming is definitely in her future. We’re hoping to arrange something where she can go in an indoor pool so she doesn’t have to wait til the summer. Of course we’ll take lots of pictures when it actually happens.

The rest of us are doing well. Drew is getting bigger by second it seems and him and Mary Elizabeth have lots of fun together playing…. when they aren’t going through some sibling rivalry! oye! haha… but really how can you just not love these two:

Anyway, a belated Happy New Year to you all… we’ll be checking in soon! 🙂

Ever since Drew’s 2nd Christmas, he hasn’t been too fond of Santa Claus… at least not up close. You can’t really count his 1st Christmas because he was only 3 weeks old when we took the picture!

He really doesn’t like anyone dressed up in Character or anything like that. Santa looks different, I mean he’s all in red, big long beard… it’s a bit nerve wracking for Drew. And let’s not even mention the Easter Bunny! ha!

Drew takes after Daddy, who had the same fears. But alas, Drew was brave this year for his 4th Christmas!!!

Due to the other kids going up, ME making it seem oh so fun and talking to him about it… and a little push from mommy & Grandma… he went up and very very close to Santa. Sure he froze and stood there and was a soooo nervous – he did it. It helped that Santa was so sweet with him. He tried talking to him from a distance about Thomas the Train, Buzz light year and asked him if he wanted any of that or some cars for Christmas. Drew was intrigued. When Santa tried to get Drew to come up and sit on his lap or next to him, Drew started to back up, so mommy placed him right next to his sister letting him stand there, and yep that’s where he stood, frozen- no smile- but he stood there and thus we have a picture – Mommy was proud, he was proud, heck he even gave Santa a High Five afterwards, maybe he’ll get better and better as the years go by. Time will only tell!

Here are some of the funny pictures we had from his 2nd and 3rd year with Santa. Reminisce with me!

2008 – I plopped Drew down without him knowing really what was going on and he immediately started climbing off and crying. Photographer was fast and took the picture as Drew first started getting down.

2009- There was NO fooling Drew here… he was hysterical the moment he got on Santa’s lap. Holy cow was he crying! 🙁

So it seems we are finally at the end of the rollercoaster chin surgery that began September 20th and now has ended on December 10th. Yea, phew.

As mentioned, her chin surgery was to remove the “puffyness” look of her chin. There was a lot of cyst and some scar tissue there that kept it from looking more “flat” so to speak. Her chin will still have an enlarged look due to her jaw being displaced – until future jaw surgery. However, it was important to remove as much of her cysts as possible.

The surgery was successful, but the drain she had in came out a little premature. She had swelling upon swelling, split open her stitch line a few times (well a little portion of it) and bled at home, at school twice… etc. and then had a 2nd procedure in the OR which included a steroid injection to help with the swelling issues. After all that- we had thought she swelled up again but it was actually an infection. And as noted in the last update- we were in the hospital and she was on IV antibiotics to clear that up.

From there, we were told we’d have to come to see Dr. Waner every 2-3 days for 2-3 weeks! (He had medicated gauze he was packing inside of the chin so it would heal correctly -and also drain any excess puss into a big gauze she wore). Anyway… this wasn’t good news because  well- that’s quite the trip especially considering high priced gas, tolls and parking garage fees! However, she healed up better than expected and we only had to go there for a good week or so! Phew.

Today Dr. Waner observed her chin and saw that it was closing up nicely, she no longer has to wear the gauze, we’re done packing it and all she needs is a simple band-aid there til the hole finishes closing.  YAY for that! Her chin looks much better and he said it will probably look even better after the skin settles back into place (it appears a bit “bumpy” right now from all the work done and packing etc.)

Anyway, all of this was a big distraction from the fact that she actually had her trach removed and is doing fantastically well with that. The hole where her tracheostomy was is a lot smaller than it used to be but not closed yet. Due to the fact that she’s had it in for 5 1/2 years- he may end up needing to stitch it- if it doesn’t finish closing on it’s own. We’ll follow up with mid-to end of January about that. Otherwise ME is on a surgery break for right now and was told to “Enjoy the holiday” – ahhhh 🙂

Pictures show:  Hugging her friend Maddox at the hospital with her drain in after surgery, One of her Swelling episodes, Bandaged after infection and then today

Well…. just by looking at the page you can see there have been some changes. It’s been a while since we’ve done anything with the site, and it’s because it was a bit cumbersome to do everything. So we changed things to make it easier to update. The site is not done so the pictures, videos, links and so forth are not there but the updates are so I figured I’d update everyone.
So a lot has happened since the last post on June 6th!!! Sheesh.
We went on vacation in July. It was a split trip with lots of things to do- Lancaster… Hershey… Philidelphia. All in PA. Lots of things to do from horse & buggy rides, amusement parks and children museums… plus lots of yummy food and such.
At the end of August we were preparing for school… Drew got potty-trained at the last minute thank God!!! And we made arrangements for Mary Elizabeth’s nurses at her new school etc. Of course, to add to the hecticness- on August 25th Mommy started getting some pains in her stomach (while in the city with ME for a dental appointment)- ended up in the ER up by us later that day… with what they thought was appendicitis. And it kinda was that but what happened was I had Meckel’s diverticulum…this only happens in 2% of the population and I had no symptoms or issues up to this point. It was a bulge in the small intestine that was created by a malformation of left over tissue left over from birth. That became infected thus giving me the symptoms of appendicitis. The appendix however also became inflamed because of the infection. They removed both this diverticulum and the appendix. Thankfully they did this as a laproscopic procedure which gave me an easier and shorter recooperation. I had lots of friends and family who helped me out as well 🙂
September came and both kids started school. Mary Elizabeth was a little bummed because the district messed up and hadn’t gotten a nurse for the bus yet (and still hasn’t to this day) so she wasn’t and hasn’t been able to ride the bus yet. There isn’t a day that goes by where she doesn’t ask me about that…. but she will ride that bus soon!!! ME loves her new school and is doing fabulous. Made lots of new friends and is just enjoying every minute. We like her school as well and are blessed that she is able to go there. (Leptondale Christian Academy). Drew started preschool where ME used to go (Trinity Preschool) and is doing well. He already knew some kids in his class when he started so that was good. He is also familiar with the people there because it is at our church.
On September 20th she had a chin surgery to help debulk the chin (remove the puffyness of it – not the length because that is due to her jaw being dislocated and she’ll have jaw surgery in the future when it is the appropriate time in her growth). This surgery, though successful has been complicated. The drain came out that she had in the side of her chin… a bit prematurely, she swelled up, antibitoics and steroids helped to remove the swelling but it came back, they drained it and did a steroid injection. She bumped her chin several times making it bleed/pour out (which sometimes helped with the swelling) etc. It has been a couple months of stuff like this… but I’ll get back to that in a minute. Oh and before I forgot… somewhere during the whole recuperation period and before the next event I speak of… ME decided to chop her own bangs which threw mommy for a loop. It was really short and choppy so we tried to cover it up by cutting more and giving her a “side bang” look. You’ll notice that in pictures! I think she won’t be doing that again though as even she didn’t like how it came out!
On October 16th, Uncle David (Jessica’s brother) got married to his girlfriend Kelly! It was a quick engagement/wedding so everything was really hectic but it turned out beautifully. They will probably do a family party after the holidays as there are many family members they would have had there if they had time. So more partying to come! ME was the flower girl of course and was a beautiful – great one at that.
We enjoyed the rest of the Harvest season with apple picking, pumpkin picking, hay rides, pumpkin carving and dressing up in costume! Mary Elizabeth was Little Red Riding Hood and Drew was Buzz Lightyear from Toy Story! They looked adorable of course!
On November 1st was when she got her steroid injection for her chin in the OR as mentioned above. She also had some lasering done and a scope of her airway where we were told her airway is great and she could come in about 2 weeks to the office to discuss getting capped!!! This would mean a cap would be placed over her trach to not allow air in or out and prepare her for decannulation (removal of the tracheostomy). This was exciting news!!!
Then on November 16th we headed down to Waner’s office and after a long wait and a hefty parking ticket plus hecticness surrounding all of it- we got out of there finding out that they would take ME in the hospital and cap her for one day, and remove her trach the next day. We were so excited……..
We celebrated Drew’s 3rd birthday… yep he turned 3 on November 22nd, and yes, ok mommy turned 33 on the 21st too and we celebrated that. Drew had a couple family parties and had his kiddy party at Jumpin Jakes. We had a great Thanksgiving with family and friends and we also went to the Radio City Christmas Spectacular in NYC. Lots of fun!!!
On November 29th, we came back to NYC to start the decannulation process. She was capped and while they did that we asked about her chin which was swelling up again. They went to drain it with a needle (which yes ME tolerated just fine) and found that it was all filled with puss. They said it was probably infected and decided to bring her into the OR to clean it all out. So we waited in the room and we couldnt feed her, so she played a lot and stuff. Finally at 3pm she went in and was under for a total of 20 minutes- it was a huge abscess they said and they were surprised it didn’t cause any pain. Figured it didn’t cause a fever just yet cuz she was on antibiotics (with steroids for swelling). So they were really glad they got in there and took care of it. But they had to pack her chin with gauze and would remove some after a day or two and do that again in a day or two so that it would heal and close from the inside out. That night was a little rough having her sleep capped, lots of snoring- she wasnt used to sleeping that way plus the body still wants the air to go out that hole that is in her neck. The next day they said her oxygen levels were good so they removed the trach. YAY!!!!!!!!!!! 5 1/2 years and the day finally came. She has gauze on her neck to protect the hole. She is doing great and did much better that night. Which brings us to today… Wednesday December 1st… and we found out that though she should’ve gone home- the infection was one that she needs IV antibiotics for in order to get it tackled. So the idea is to have her here one more night to get the meds she needs and then she can switch to a different oral antibiotic at home. Yes it’s hectic but at the same time- everything is getting taken care of so we are blessed for that reason.
She continues to do fabulous without the trach and we are excited for a trachless future!

I’ll be sure to update this more so I don’t end up having to write a novel next time… the site is a work in progress so bear with us 🙂

So we were invited to the first annual Picnic in the Park patient reunion with Dr. Waner and Dr. Berenstein. Of course we jumped at the opportunity to go. It was a blessing all around. To get to chat with other families and see her doctors and nurses without asking how surgery went was awesome! We met quite a few families today, saw some that we’ve seen in waiting rooms before. We really liked all of the people I met and am looking forward to connecting with some of them futher.

We were also approached by a 21 year old who had the same condition as Mary Elizabeth and she was a beautiful young girl with dark hair and gorgeous eyes. She came to us and said Mary Elizabeth reminds her of herself when she was that age, that she felt like she was looking at herself when she saw her. It was so nice to connect with her, We are hoping to find her online to hear more about her journey, she used to have a trach, and a feeding tube- (obviously not anymore) she was there with her supportive sister and they talked about how tough she was and whatnot. It was good to see her doing well and happy.

Anyway, they are hoping to do more for the families affected by conditions such as Mary Elizabeth’s and other ones similar to it in some ways. They are looking to connect parents and get support for them, but they are also fundraising for those families who need it.

Please visit www.vbiny.com and www.wanerkids.org for more information.

I’d urge you if you can at all, donate… in any amount, at any time by going to https://wanervascularanomaly.org/donation

And in the “in honor of” box you can put Mary Elizabeth Raia 🙂

Here are some pictures from today.

Mary Elizabeth by the sign in front of the event

Janna (surgical nurse for Dr Waner) Mary Elizabeth and Dr. Berenstein (who did her sclerotherapy procedures- and also brought Dr Waner to NYC)

Mary Elizabeth with Dr. Waner- who has been helping her since she was 3 months old