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.