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.

Lucky Girl...

This is suppose to be all about Grace but I too am a lucky girl. How about Grace's gift idea for me? I was SO impressed with her on that post-big words and a huge idea for a 8 year old. I thought her tutor was fabulous but now I am convinced! :) I was totally surprised. I actually was weired out when I saw there was a new post. I knew I hadn't done it and didn't know that D had at that point. As I read it, I went from panic that my little girls blog had been hijacked by a weirdo to complete shock - the REALLY good kind. My hubby is the best and so full of surprises- I am a lucky girl! I find it incredible that he still likes me so much. He has seen all my moods and not all of them are nice, I assure you! So glad he asked me to dance, that is how it all got started, and so glad he followed it up with a marriage proposal three years later. He literally had me from hello!

Fast forward 16.5 yrs from him asking me to boot scoot around the dance floor and here we are today. We had a really busy week celebrating birthdays last week, Caroline, Grace and my mom were all birthday girls. Judd is a little confused about having to wait till March for his since both girls got to have theirs. I want him to stay 3 forever so March seems too soon for me. Anyways, Grace is still doing really well with the trach. Speech is making some improvement although it is hard for us to measure since we understood so much prior to the surgery. We call it Grace-enese - it's our second language. Certainly a stronger voice and in isolation she can make much clearer letter sounds it is just the conversational speech that is harder to evaluate and measure. We had a follow up with the ENT last week and got a great report. We are trying to get a sleep study sooner than the next available, which is March, to get an assessment of her breathing while she sleeps. If all is well and the report shows we are back at baseline we can get the trach out. I am confident it will be out as soon as we have our sleep study. We are hoping to get in done sooner at another hospital or get moved up via a cancellation at TCH. It seems ridiculous to keep it in for 4 months just waiting on a time slot for the test.

Our schedule is so full with therapies, I am not sure how we could have stayed in school. The home bound schooling has been great. It allows us time for all the rehab stuff that she needs without all the time restrictions. Her spirits have been much better the last few days, remember she has been celebrating and that seems to be when she is at her best! The last 4 nights she has run a fever during the night but is fine during the day even without Tylenol so that is a little mysterious. Did you know that when you run a fever your heart rate is higher? It's a new nugget of information for me so I thought I would share. I hope it is nothing but it is a little strange. Being that I am not really into mysteries I hope it goes away tonight.

My computer needs some time at the techy hospital before I can post my recent photos. I do have some fun ones to add so just know the pictures are "in the mail".