Tuesday, March 23, 2010
Saturday, February 6, 2010
Last night she had her first half sleep over (really just a night time play date) with a friend. She is into sleep overs but we reserve those just for cousins- for the time being. She had a classmate over and they played awesome together. It is great to see her building friendships on her own.
Thursday, December 31, 2009
Tuesday, March 10, 2009
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.
Thursday, January 29, 2009
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!
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!
Thanks for walking with us on our journey!