November Madness

Posted by Andrew & Jessica on Monday Dec 7, 2009 Under Andrew, Mary Elizabeth

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 🙂

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Tonsillectomy Update

Posted by Andrew & Jessica on Monday Oct 12, 2009 Under Mary Elizabeth

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. 🙂

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September went by FAST!

Posted by Andrew & Jessica on Monday Oct 5, 2009 Under Andrew, Mary Elizabeth

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.

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Gtube Removal Update

Posted by Andrew & Jessica on Wednesday Sep 9, 2009 Under Mary Elizabeth

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!

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One tube down…. one to go!

Posted by Andrew & Jessica on Saturday Aug 22, 2009 Under Andrew, Mary Elizabeth

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.
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.

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!!!!

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