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

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. 

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!

We are welcoming 2010, at the end of 2009 some good things started to happen… Mary Elizabeth got her gtube out, Andy got a new -great- job, and we are hopeful that 2010 will bring on lots of good things. 

We already know that Uncle Daniel & Aunt Amber’s baby is coming in 2010 (and soon as she is due in 2 weeks!!!)… and we know that Mary Elizabeth has a very important appointment coming up. Unfortunately it was post-poned twice, but the date set is February 1st… she is going to have a scope done under anesthesia to take a look at her airway and determine how close we are to decannulation (trach removal).  In addition to the scope they may do a little lasering in her mouth while they are at it- as they see fit.

The last month of December was a whirlwind. Mommy didn’t have time to blink! It was also a very expensive month. We had Aunt Amber’s baby shower, went on a train ride with Santa & Friends which was so much fun!!! And we had lots of holiday activities. ME was very into the whole idea of Santa this year which made it very exciting. Drew loved opening up all of his presents of course. And they both were taught pretty well on what the true meaning of Christmas was. We did help with a little fundraiser in our area to help a family in need and ME’s school did some donating as well. It’s good to see that ME is so giving at such a young age.

Anyway, in addition to 2010 starting, we are beginning a whole new chapter for ME… while she doesn’t start Kindergarten until Sept 2010… we are already registering her like NOW for Kindergarten. Crazy huh!  The thought is a bit scary as we are used to her nice little preschool – and we are now opening up to a whole new world with her being in elementary school but she has a strong, loving foundation so we are thinking she will do just fine.

Other than that things are well. We hope everyone we didn’t see had a very Merry Christmas and has a Happy New Year.

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

Today Mary Elizabeth had her tonsils taken out.

The plan going in was that he would remove the tonsils and then scope her airway and see how it looked. He said he probably would do some lasering to clear the rest of the airway.

The good news was, he didn’t do any lasering. This was good news because there was nothing left to laser! He did say though- that her tonsils were humongous due to her malformation so by removing them, she now has a lot of room! If she had not had the trach in place she would’ve had a severe case of sleep apnea.

Onto more good news…. as it stands now if everything goes well… he will do a scope in 8 weeks and prepare for her extubation. Yes, that’s right it’s possible she is on her way to trach removal. However, we will need prayers that everything goes well. We are praying that there is no regrowth, or new cysts that occur and not a significant amount of scar tissue. If any of those things happen, it will be an obstruction to her airway. However, if it all goes according to plan- her airway will be completely fine and able to continue the journey to getting her trach out. Having said that, it’s a long and sometimes bumpy road once we set that plan in motion. We will have to start with capping it and she will have to work at changing the way she breaths which can be difficult at first, she will need a sleep study and so forth (not all of which we know right now). But still – a step in the right direction feels good.

In addition to needing prayers for that, we would like you to pray that she does not have any bleeding from the tonsillectomy surgery. It is especially important that we are gentle with suctioning the trach and her coughing remains minimal as to not irritate the area and cause bleeding. If this should occur we’d have to call the Dr and go into the ER. But we are praying and believing that won’t happen either.

All in all things went well, Mary Elizabeth is as comfortable as can be expected. Her throat hurts and she’s feeling groggy and talking quite low. But still she is doing pretty good and remaining strong and happy. We have some pain meds at home to keep her comfortable – if needed and she’s on some antibiotics as well.

She’ll go back next week on October 21st for them to just take a look at her throat and see how it’s healing. And we’ll schedule the scope for around 8 weeks from now. Give or Take.

We’ll be busy since on October 22nd she has to go in to stitch the last bit of what’s left of her hole where the gtube was. This will be an in and out thing and we will be happy to be bandage free there when it’s done!

We’ll keep you posted as always on her progress, and Thanks in advance for all your prayers, thoughts and love.

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.

Well ME has been gtube free for 2 1/2 weeks now and is doing well. I wouldn’t say everything went totally smooth though….

After about a week and a half we noticed a lot of leaking through her bandage. And then she had a bit of pain along with it. We called the dr and he was out on vacation but they instructed us to remove the bandage and do our best to keep it clean/dry/covered. We did that, and there were quite a few days of her having pain here and there. We did our best to make her comfortable and were praying that it wouldn’t become infected. We did a good job with it though and were able to make it a little better. It also began leaking a bit less so that helped.

Yesterday we went for our follow up and as we knew, the hole had closed quite a bit considering the hole had been pretty larged (it was really stretched out). So it is good that things are moving in that direction. He said we did a good job bandaging it, but he had better special stuff that would last longer and keep it tighter. He also suggested we use vaseline on the area. He said the area is pretty sore so when the stomach acids leak out it feels like it’s burning, which was the pain she feels. The vaseline will help it and then the bandaging will help keep leaking minimal. So the process is- we put the vaseline on, then pack gauze over it and tightly put this bandage tape over top of it called "Elastoplast". The whole idea is to put some pressure on the area to keep everything in. He gave us some extra stuff so we can do it ourselves should it leak or come off, but it definitely lasts pretty well.

He will see her again in 2 weeks to follow up, he said the process can take a couple months but it gets better and better as the hole closes. Since it is closing, it should close most of the way at the very least, if anything there may be a small opening (like a pin hole) -should this happen he’ll put one small stitch in quickly and she’ll be in and out with no recoop.

So we’ll just ride this out. I’m glad to report though she hasn’t had any more pain in a few days so I think we’re on the right track!

Mary Elizabeth did great on Friday getting her gtube removed. It was a short procedure – as the procedure itself took less than 15 minutes, though because of prep time, the iv being put in etc. – she was in there from 7:45 until 8:20. Still not bad! Thing is- she was a sleepy head and slept from then until 11ish, So mommy and daddy spent a lot of time staring at her in recovery!!

When they were bringing her into recovery, we talked with the Doctor. He said her hole was REALLY big and stretched out. We knew this- as that was what caused the leaking… leading to soreness/redness – a horrible rash with some bleeding at times and thus pain of course. Yet he still prefferred that the hole would close and heal on it’s own, it would be better for her that way and typically 75% of the time the hole does close completely on it’s own. If it should not, it will close most of the way and the stitching would be minimal.

She has a HUGE bandage that seems "Super-glued" onto her belly and where the gtube WAS is still a bump- reason is- he had put some special stuff on the area with lots of gauze as to sort of keep it "plugged"  but without it being inside of the hole so the hole could still close. So it sticks out a little there, but it helps prevent leaking. The bandage SHOULDN’T come off, but we can’t emerge it in water or get it too wet. So sponge baths for 2 weeks.
In 2 weeks we go back and he’ll take the bandage off and check to see how it is doing. He’ll decide then if the bandage needs to be reapplied.

He will give it a couple months to fully close. So far we haven’t noticed any leaking and she’s been doing good with the bandage on. She is very happy and is often lifting her shirt to show everyone and anyone that she now has a bandage and no gtube. So very proud! She’s come a long way and deserves to be proud- we are too!

Seems unreal that we are done with that, we are praying that before long we will be thinking that about the trach too, but only time will tell.

Anyway for now we are enjoying the rest of the summer. Mary Elizabeth though is anxiously awaiting going to School, starting September 14th and also starting Dancing School around then as well!!! We all know that she’s a social little butterfly so a busy schedule is just up her ally!

Drew… well he is now officially, today, 21 MONTHS OLD!
He’s a very active little boy, so he sleeps REALLY well (Thank Goodness!!). He is a happy lil kid though and loves his big sister, they are a bit of trouble when together…. but fun nonetheless. Drew is talking up a storm and says just about everything. He loves to sing along to songs and he has a SERIOUS addiction to guitars. Not kidding there, do not take his toy guitars away from him!!! He definitely seems like a natural, but he does have those musical genes on both sides of the family so that might be why. Soon we’ll be starting to plan his 2nd birthday. Seems unreal!!!!

...until Mary Elizabeth gets her gtube taken out!!!!!

We go to Westchester bright and EARLY Friday morning, August 21st for her gtube removal!

On August 11th we went to her Dr. who handles her gtube and whatnot- and he reviewed the paperwork which said that she is OK to get her gtube out. He discussed with us that he would much prefer to remove it without doing it surgically and stitching it. He said 75% of patients with gtubes have the hole close and it heals on it’s own. We are praying she is one of them.

What he is going to do is take the tube out and cauterize the area as to help it to heal and close correctly. Then he will place a dressing over the area to help with leaking issues. This is a major dressing which will stretch over the belly and we should not let it be emerged in water as to help keep it on. So baths will have to be sponge baths with some hair washing in the sink or something like that for about 2 weeks. As for pools, she doesn’t go in deep ones anyway because of the trach and she has been loving sprinklers anyway which the Dr said is just fine.
The dr will also give us extra dressings in case it should come off or we need to cover it longer than 2 weeks. The leaking should subside as the hole closes, which again we are praying it does entirely on it’s own.

Keep her in your thoughts and prayers and join us in the joy of putting the feeding tube in our past!!!!
We will keep you posted as always