Sunday, March 21, 2010

I want one!!!

Last week I got a call from our Physical Therapist asking me if I wanted to bring Gracie down to the center to try out a new walker that was being demoed. This walker is relatively new on the market and very much unlike any other walker on the market. Gracie's therapist--Becca said that she was really anxious to see kids in it, because it is a good idea, but sometimes with these devices they look good on paper, but you get the kid in it and it doesn't work.


Anyways...the walker is called the KidWalk, you could learn more about it here http://www.primeengineering.com/pages/products/kidWalk.html and it was AMAZING to see Gracie in it. At first she hated it, but once we took off the upper chest harness, and moved her to the linoleum, she did great. Gracie moved back wards with purpose and ease and even tried to move forward. When I pushed the walker she eventually learned what her feet must do and tried to walk instead of just raising her feet.
We will be trying this walker out some more in the next few weeks, but I'm sold! It's a hands free walker and allows kids to move on all terrains and explore their surroundings just like non-disabled kids. We are now in the process of getting a prescription and writing the letters to insurance to try to get approved for one of these walkers. Our PT thinks we have a chance for two major reasons, it's likely that Gracie won't need any other major equipment like wheelchairs or the like and she is 21 months and her only mobility is rolling around on the floor. Wish us luck that we will get one of these amazing walkers soon. If there is anyone out there that has gone through the process and has some pointers, I would love to hear your input.

Tuesday, March 16, 2010

Living Through their eyes

Lately I have been lost in thoughts...thoughts about the past, the present, and the future. Thoughts of where my life has been, where I'm at today, and where my life will be years down the road. Many of my thoughts centered around Gracie and the choices and decisions Jason and I have made in her life. We asked Grace to go through so much just to stay here on earth, and at times I have wondered if we pushed her too much. But seeing the joy and excitement for life in her eyes assures me that the fight we saw in her so many times as she laid helpless and what seemed to be at the end of her rope was real. Gracie fought through more than what any child should go through to experience life's simple and pure pleasures. Though I have seen that zest for life many times in her life, I have been able to feel it more within the last few days.

Grandma and the girls at Disney on Ice
Through Hope Kids we were able to take Gracie and Morgan to Disney On Ice: World of Fantasy, to my surprise Mickey and Minnie were there which made Gracie's day. I know I have said this before, but Gracie absolutely is in love with Mickey and to see the joy and excitement in her eyes as she watched him helped me remember what life is really about.

Gracie's 1st time on the merry go 'round
Morgan always is afraid at first but then remembers she loves it.
Then today we took advantage of the beautiful Spring like weather and took the girls to the zoo. It was wonderful to walk around and see the interest in Gracie's eyes as she watched the animals roam around in their little habitats. We decided to take her on the carousel for the first time and she loved it. Oh, how I love to watch this little one enjoy her time here on Earth!! If only I could start to emulate that more in my life.
Morgan trying her best to keep Gracie from falling off.
if you listen carefully, you can hear Gracie answer yeah.

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Tuesday, March 2, 2010

Videos

Michelle these are for you and Cade, since you have been asking for them. Nothing to special, but I still think they are cute. Morgan wanted to share her scripture from Sharing time---she knows it but needs help when she is asked to 'perform'.
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Monday, March 1, 2010



Gracie and her trial off oxygen.


the girls with our friends--the Tavernaris from Brazil

Life has been so crazy for us, hence the lack of posts. We are all doing well and looking forward to some warmer weather and some very fun family trips in April. The first week of April we will be traveling to Southern California, we are going to both Disneyland (thanks to the Give a day of service, get a day at Disney) then we'll be heading down to Sea World in San Diego. We are so excited to finally travel as a family and make some great memories with our girls.
Morgan is great. She is at the inquisitive stage, everyday we get asked thousands of questions. Why do we have bones? Why does Jesus live in Heaven? Why do we have a belly button? Why are you doing that? etc. But the majority of her questions lately have focused around Heaven and who gets to go there, when do we get to be there, etc. Perhaps the most tender moment for me was when Morgan looked at me and said, but mom I don't want to die and go to Heaven. Silently praying, I told her she didn't have to worry about that, she still had a long time here on Earth. Then she said, I don't want Gracie to go to Heaven soon either....heart wrenching....what do you say to that?



Though there are times where all we want to do is tape Morgan's mouth shut, oh how we love her voice, her sweet loving nature and the amount of love and adoration she has for life.

Gracie is doing wonderfully well. She is jabbering all the time and is communicating in her own ways. She screams when she wants something and when she has done something that she is proud of or wanted to do she shakes her head yes in satisfaction. Gracie is now blowing kisses and waving and saying bye bye.
Gracie has decided that she doesn't need oxygen anymore and frankly we are at our wits end on trying to keep it on her face. We have tried everything apart from super gluing it to her face. After she pulled the oxygen off completely on Sunday, I hooked her up to the pulse oximeter to see how she would do on room air. I seriously was considering just keeping her off of it during the day, but I can't make that decision without guidance from her cardiologist. Especially since her sats are borderline acceptable, but who knows maybe her doctors will think differently, we have an appointment at the end of March.

I have videos I want to post, they just won't upload tonight. I'll try again tomorrow.