www.BabyRaia.com

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 🙂

OOPS we’ve been a little busy!!!!

First things first…. MARY ELIZABETH IS 5 YEARS OLD!!!!!!!!!!!! Yes, that’s right we celebrated Mary Elizabeth’s FIFTH birthday
recently, her birthday was May 20th but she had a few different
parties, with family, friends of the family and then her school
friends. A bit much but much deserved- plus I have to say 5 is a
special birthday dontcha think?

So let’s catch up on what’s going on with her…. Mary Elizabeth had another surgery on April 8th in which they did a scope, some lasering and a steroid injection to the top of her airway. The top of her airway has a bit of scar tissue there which makes the entrance to her airway a bit narrow. They are working towards making this more open – and she will have another scope to check things out on June 14th.
We just visited Dr. Waner’s office on May 11th, which is when we scheduled that next procedure and also discussed what else she’d need to be done. They will eventually do some more debulking on the chin and also she will see another jaw specialist who is coming in November I believe. They showed us a model of her jaw that they had made in the past. I know in the past they said no work on the jaw before a certain age, but we will see this specialist as well who has done work on children like her and see what input he has when he comes.

I suppose we will know more after June 14th.

As for the last post where we were talking about her missing teeth etc. One more came out after that, on it’s own I suppose… not typical though, like not a loose tooth etc, just from her issues. That was on the lower left side. But the good thing is – we are finally seeing one of her adult teeth coming through… her two front bottom teeth are coming in, the left one is half out, and you can see the right one is right under the gum about to come through. So we pray that the rest come out soon too. And we are working hard to keep them strong and healthy as always. She has an appointment with the orthodontist on Thursday (May 27th) to discuss early intervention with her teeth, not sure if anything will be happening right now- but we’ll get an idea of what plans will be made as she grows.

As for the rest of us… we’re all doing well. Drew continues to be a little handful (though an adorable one) – he’s getting older and understanding more so that has helped. He shows interest in pottying but doesn’t quite “get” the sensation of actually going. We haven’t really worked with him on it- but when he asks to go potty we certainly let him pretend to go or whatever. But this summer when we’re home more and not running ME out to school and speech therapy etc… we’ll work on getting him potty trained in hopes of him starting preschool in the fall. In the meantime he’s going on lots of playdates and having fun with his big sister at home.
Lately, Drew & Mary Elizabeth’s big thing is reenacting scenes from movies. For instance, in Annie- he plays the doggy “Sandy” and ME will be Annie, and they do some of the scenes where she’s calling him. Then in Snow White he’ll be the man that tells Snow White to run far away, and off goes ME running… he’ll also be the prince in the end and give ME a kiss to wake her up. They are learning more scenes as they go. I wonder if I should be putting them in acting classes??? LOL!

We will keep you all posted as the appointments come and things are happening around here.

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I have good news, bad news, and worse news. So what do you wanna read first???

Let’s hear the good news first.

Mary Elizabeth & Andrew have a new baby cousin!!!!

Daniel & Amber had their baby girl on 1.27.10 at 11:07pm.
Jubilee Anna was born weighing 8lbs 3oz and measuring 21 inches in length. As you can see she is beautiful and had a full head of hair. Both Mary Elizabeth and Drew just loved her. And both got turns holding her. Especially Mary Elizabeth, she got a lot of time holding her. For instance, Mommy was desperate to hold her niece Jubilee for the first time, but of course Mary Elizabeth took a turn first and didn’t want to give her up. So finally we said "OK now, Mary Elizabeth- it’s mommy’s turn to hold her, that’s enough"… Mary Elizabeth replies "OK but let me tell you a secret first". Mommy leans down and listens while Mary Elizabeth brushed her hair back and whispers "NO!" ever so matter-of-factly. So you can see, she was very much in awe over her new baby girl cousin. 🙂

Well with all the joy of that, we then moved on to Monday, February 1st where Mary Elizabeth was to have a small procedure done in the hospital. Back in October, she had her tonsils removed. They planned on scoping her while under anesthesia today to see how she healed from that surgery in order to discuss the (long) process of trach removal and where to go from here. They also were going to do some minor lasering in the mouth area.
As you may suspect- she did not heal how we wanted or expected. While the area techincally healed fine… she had some regrowth of tissues in the back of her throat/top of her airway that narrowed the area a bit. So this needed to be taken care of. They removed/lasered one side and said they would do the other side in 6-8 weeks. Which we already scheduled for April 8th. The goal will be to take care of that other side and hopefully she won’t have any problems there from here on out. If that’s the case we can readdress the trach removal process. But for now that is put off. Prayers are that she will not have any regrowth or any complications that would prevent us from moving on. This was a speed bump in our the road, and while it was bad news we are trusting the Lord to handle it and praying for the best. We ask that you keep her in your prayers as well.

So this news of course was upsetting, but in the back of our minds we knew it was a possibility as it comes with the condition and unfortunately that’s something we have to deal with. Disappointing to say the least. But when they came out to tell the news of the regrowth, the also carried a jar in their hand and handed it over. You see, this is what we call "worse" news. Because it was more than bad news- it was unexpected and really upsetting. The jar was said to contain her TEETH. Yes, handed over a jar of her two front, top teeth. Shocking and unexpected and well it threw us for a loop. Apparantly during the scope they came out. Mary Elizabeth’s teeth are not in great condition- they are baby teeth and have not been able to withstand the oral problems she has had. It doesn’t help that she has little/no saliva. So yea, they were weak and perhaps even a bit loose. And out they came. Now at 4 1/2, we can’t imagine WHEN her adult teeth will come, so a toothless smile might be what we see for a while. As if she doesn’t have enough issues right? Mary Elizabeth deserved to have this not get her down too- so we made it a happy thing and her Grandma’s sister – Aunt Fil made a little pouch and she put the teeth in it and placed it under her pillow that night. And thus, she learned about the tooth fairy and was able to get a little present today with the money she got from the tooth fairy!

We did hear from her dentist (who also came down to see her during the surgery as he works in the same hospital)…. he said from her April 2009 xrays, the adult teeth were closer than most her age. She does already have one of her 6 yr molars… so perhaps she is a bit ahead of the game with her adult teeth. Where as normally girls start losing their teeth at 6-7 yrs, she may have been one of the ones to lose them at 5- 5 1/2 years. So we are praying the adult teeth come out sooner than we may think. He will see her in the spring to take another look at how things are going.

In addition to ALL OF THIS… (plus without the nitty gritty details of the hecticness of the day and whatnot) she has to start seeing a orthodontist, yes… in the city. This is not because of the whole tooth thing, he is a specialist that works with other patients like herself and was referred by her surgeon. He will help guide us as in what we can do for the future jaw surgery. They said typically they would do this as a teenager but we discussed her issue of the teeth not being lined up- making it hard for her to chew and not helping her speech issues. So they are going to see what can be done earlier – and if we actually have to wait that long- because originally we thought about 6 or 7 years old for that. We shall see though. It’s just another list of things we have to figure out and deal with.

Anyway, on that note.. I’m not quite sure how we’d handle all this without our faith. Our strength comes from the Lord.
We will keep you posted as always, keep her/us in your prayers and be on the lookout for January photos to be posted sometime this week! 🙂

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WOW November came & went – I don’t know about the rest of the world but we were so busy that we blinked and it was December.

November had a bunch of birthdays – including 2 of our own. Mommy & little Drew are 30 yrs and 1 day apart so we did lots of celebrating.

That’s right, Andrew is now 2 years old. We had his pictures done right before he turned 2 and he was awful for them, but they turned out pretty cute anyway. The one to the left is just one of the 4 that we chose. No props this time, he threw them all away from the scene! And I know what you are thinking – as most say – terrible 2’s right? Yep, except he’s been in it for about 6 months now. Fun!

Now don’t get us wrong, he’s not all bad. He’s actually pretty good when he’s got some toys and is hanging out solo with ya. He is very mushy and loving as he’s always been. And we all know what a cutie he is. He’s very smart and already taking after his daddy with the music stuff. More than I ever thought… he seems to have a natural drive for the guitar and we won’t be surprised if he follows in his father’s footsteps with that. I can’t really explain it, you just have to see him with it to see his enthusiasm for it. Amazing!

He’s 29 lbs now (only 2 lbs less than his sister!) which is pretty average and he’s 33 inches tall now. He has been growing well, though he eats pretty well…. if you give him what he wants. He is kinda picky. He is showing some interest in potty training, but doesn’t quite get when he’s gotta go yet… so it will come with time. He does say over and over "my turn" after ME goes potty – so we put him on anyway. He talks well too, chattering away all the time.

And as always he loves his big sister and copies and wants to do EVERYTHING she does… can’t blame him but it’s hard sometimes!

Mary Elizabeth is doing rather well. She is loving school and doing great with the 5 day a week schedule. She looks great, is talking great, eating great…. speaking of which – her gtube area is all healed up and other than a scar and a bit of pinkness – her belly looks AWESOME. She’s been known to lift her shirt up to show people… haha, she can’t help but be proud of her belly! She’s come so far!

Today we were supposed to go down to NYC to get a scope of her airway done and perhaps a little lasering to some areas in her mouth. They were hoping to see how she did with the tonsilectomy and to determine when/if the trach was ready to come out soon. (Thus starting a long but good process of decannulation -aka trach removal). We were sad to have had to cancel that due to some congestion ME had. She is fine, but the congestion prevented her from going under anesthesia today. We are hoping to have a new date soon.

Other things that have gone on in November were lots of dr appts, helping a family member out with their surgery and recovery, the Imagination Movers concert (a kids show concert), Thanksgiving, parties for Drew, a party for his 2nd cousin Owen, celebrating with mommy for her birthday, School events and Daddy starting a NEW JOB!

Yes, Andy got a new job, something we’ve prayed long and hard about. He was blessed to have landed a great position as a Network Administrator for a large Tugboat company. So things are looking up, but he’s quite busy!!!

Enjoy the photos we have posted and as always we will keep you updated on our little family 🙂

It’s already 5 days into October?!? Where did the time go?

September proved to be a busy month, we had lots of fun going Apple Picking and hanging out at some farms, continuing to have lots of playdates, celebrated some birthdays… and of course ME started her 2nd year of preschool!!!!

This year Mary Elizabeth is going to school 5 days a week, still half day of course, but it’s a lot. Though it’s a lot- she loves every minute of it. She has an awesome teacher, great kids in her class and we already know it’s a great school. She’ll be learning lots this year in preparation of Kindergarten next year! But still having fun nonetheless. She likes to stay busy so it’s perfect for her.

She also started dancing school this month. We did miss the first class because she was having more tummy troubles due to leaking from the gtube hole that has yet to close fully (it’s getting closer but still not all the way yet). She has since done much better but like I said missed her first class. The first day she was able to go- she was thrilled. She loved dressing up, loved following the teacher and loved dancing. She is very natural about it and well you can just tell it’s definitely up her ally. So cute to see!

Soon our schedule gets busier because we finally found a new speech therapist and she begins that this week. Amongst her dr appts, school and dancing school!

Poor little Drew has to spend lots of time transferring everywhere but mommy has been making lots of playdates for the kids to have fun, and then he does get to have some one on one time with mommy while ME is at school. After the holidays pass by and the weather starts to get too cold for outdoor playdates, we’ll sign him up for some sort of mommy/me class so he can have a nice activity to go to. He had some music classes over the summer which he enjoyed, we’re thinking some sort of gym like class for him to get his monkey-like abilties out! haha.

October has already been busy as well, and we have lots of fun things planned. Some that we already have done (Like the Bronx Zoo!!!) So stay tuned.

Also- remember Mary Elizabeth has her surgery on October 12th so keep her in your prayers. She will be having her tonsils removed and they’ll do a scope of her airway to see how things are and if anything further needs to be done there.