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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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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. 🙂