Sunday, September 15, 2013

Thank You Complete Training and Team E

I continue to be amazed by the people God has placed in our lives along this journey. When we returned from Texas after Elizabeth's transplant in 2011, I started doing personal training at a local gym in an effort to try and get rid of some the weight I had "collected"  from my pregnancy with Elizabeth and the almost year long hospital stay after.. I was very lucky and found an amazing trainer Will, who took the time to listen to our journey and seriously has become almost like a counselor for me. He was very understanding of our situation, and allowed  and encouraged me to bring Elizabeth with me to the gym when I needed too. He always takes the time to play with her, and treats her just like any "normal" kid. The co-owner/trainer Kyle is also so great with Elizabeth when she is there. They help give me some normalcy with being able to do something as simple as go the gym, which isn't always easy with a special needs child.  And over the past year, I started taking Zumba classes at the gym as well, and have become friends with our awesome instructor Jodi and many of the women in our class. The gym recently started building a new facility, and Will asked me about doing a charity event to raise money for Elizabeth's continued medical expenses as part of their grand opening. We were so thankful for Will, Kyle, and Jodi who made their big day, a blessing for our family. We just want everyone who attended to know how grateful we are and how much you mean to us. Even though we aren't currently in "crisis mode" this journey is still not an easy one. And the love and support you continue to provide us means more than you will ever know!  I have definatley learned over the past 3 years, that God places people in your life for a reason. 

Some of the Team E members after our Zumba Class
Kyle & Will at Grand Opening

And of course, I have to add in an update on our miracle girl. Elizabeth is doing good with everything. She has started eating more and more by mouth, talking ALOT more and in general being a funny, spunky 3 year old with attitude :) Last week she had an orthopedic and cardiology appointments. Ortho didn't exactly have the best news. Her hips are still not going into socket the way the need too. So the Dr thinks sometime within the next 2 years she will need to have surgery to help place her hips in socket where they need to be. For now we will continue to work on weight bearing/standing/walking. We are hoping to get her a walker ordered within the next month or so to help give her more stability. Cardiology didn't have alot to offer, Elizabeth fought like crazy this time during the echo. So they were not able to get any good pictures of her heart. After discussing everything with the Dr, we plan to try and transition cardiology to Texas. That way if there are any major issues they are handled at the hospital that knows her best. And since her FLNA mutation is so rare and TCH seems to be leading with diagnosing it, it makes sense to try and be where the most knowledge is.   So we are hoping the remainder of September is good for Elizabeth. October will be a busy month for us. We travel back to Houston for her 2 1/2 year lung check up and then we will be heading to Disney. Elizabeth is being granted a wish trip through Make A Wish, we are excited for her to have a trip that doesn't involve Drs or hospitals. She has been saying "mouse" alot lately, so  I think she is looking forward to it. Thank You for your continued prayers and encouragement!

Could you still smile like this after ALL she has been through??

LOVES Oreo Cookies

Bananas are a new Favorite