A year or so later....

Wow, this is a late update by a year or so! This blog was such a great thing for Grace and for our family. If offered us the opportunity to share our fears, our hopes, our joys and our disappointments. It also gave us a record of the going ons of our lives during such a precious time. Again I will say we are blessed. We have been so loved on and so encouraged that we are often taken back when we look at our reality.

Grace is doing well. Her speech is improving and it is exciting to see and hear. I find myself translating less and less. Not that she is totally intelligible but she does have more independence and she likes to state her opinions and ideas. Her spirit is precious. She loves to sing praise and she has NO DOUBT that Jesus loves her. That is all that really matters isn't it! The rest we will figure out as we go. We aren't sure what we are doing but I know that we will do it together and for that I am thankful.

Ouch!!! Sometimes the truth hurts...

I originally posted this because it was too large of a file to email to our speech therapist but then I had a few thoughts about it...this is Grace talking to us prior to going into surgery. For those of you who haven't gotten to visit with or talk to Grace one on one watching and listening to this video lets you know what we mean when we say she has a speech impairment. So for curious minds now you have heard it. I would love NOTHING more than to tell you now post surgery you could understand 100% of what she says. I would even be delighted with 70% but that isn't the case. Her speech isn't that much better despite the drama of the surgery and the last few months. As much as it breaks my heart to admit that - it is true. No matter how much I wish the outcome was successful, I need to accept it wasn't. I am struggling with the knowledge that God is able to fix this and He has choosen not to. The "why" of it all can really frustrate me. I know that He loves her even more than we do and He has a plan for her life. He knows every hair on her head and every thought she has even before she utters a word. Knowing that as truth - may just be the only answer as to "why" I ever get.

Not even a band - aid...

We were released this afternoon and we are home. She keeps looking at herslef in the mirror saying, "there's no hole"! She did well last night. I feel like I was beaten up then run over but this isn't my blog!:) Anyways, she did great and the stoma is already closed! It hasn't leaked at all and looks good considering we just took it out yesterday. We left without even a band-aid!

Although it was rough at times we have sweet memoires to go with that little scar!

Gettin' it out...

Today we are back at the hospital. Grace is telling EVERYONE she is here to get this out (her trach). She is super excited and seems very ok with this process. We may even skip the premeds this time. The plan is to do a bronico scope in the OR this morning. Go back to recovery then tomorrow morning take the trach out be monitored overnight and go home Saturday morning. She is greeting all who enter the waiting room and questions each person who leaves. One lady asked if she was the social director here!

So, if you are confused that is because that was the update prior to surgery that I never posted. The plan changed once we go to the holding area prior to surgery. It was decided that they would do the scope and then remove the trach in the OR. She came out with a band aid over the site and we just stayed for observation. There was a very large granulation that had grown at the top of the stoma site. Our doc gave us a picture of it as a souvenir. It was blocking approx 80% of her airway when the trach was capped. The pic shows it and then the second pic is once they removed it. It isn't very pretty. It is the body's was of rejecting a foriegn object. We are all still amazed that she passed her sleep study with the cap closed and that big thing blocking her airway. It does take away any hesitation about removing the trach. No more trach for us!!! Yippee!

Cliff Notes from Today...

Just wanted to update that Grace is out of the OR and we are waiting on a room. We had a surprise granulation (tissue growth) in her airway that was blocking 80% of her airway below the flap. They were able to remove that in the OR and remove the trach. I guess it’s a good thing I didn’t remove the trach myself at home, like I wanted. That little granulation could have been a big problem! I will update more once we get settled in our room!
Thanks for walking with us on our journey!

My how times flies.........

For those of you concerned........I did come home from my cruise! I had an awesome time and will post some pics on that on our family blog www.rothtx.blogspot.com . Grace is continutining to get home bound school services and do speech and occupational therapy. We recently got accepted into a program that will offer us more therapy coverage on our insurance as well as respite care hours even after the trach is removed. That is super exciting for us . It brings the peace of mind that Grace will be able to recieve the services she needs. Sort of like winning a lottery of services in the insurance world.

Grace passed her sleep study last month and so we are getting the trach out Jan 29th. We will stay at the hospital for two days and come home with a band aid over the stoma. The end of the trach adventure! I will try to post more often in the coming weeks as we wrap up this chapter in our little story.