We are home from St. Pete. Rylee did great, Thank God. I love the Mickey button it's so much better for her and for us. She no longer has a tube hanging out of her and tied up into her diaper 24/7. We just attach the tube when she is on feedings. We still don't know totally what's going on with her and that scares me to death but we just take it one day at a time. As Dr. Jones said a few months ago when we saw him last that this is just a band aid until we can put all the pieces of the puzzle together. I really hate BAND AIDS. I'm a need to know person so this is very hard for me to except. Life is no longer the same for us. I feel as if life has stopped this past year and half. Yes, we have done lots so that everything appears normal to Drew and anyone else who sees us but I don't think I have really lived in those moments. This is our life now and I want to start enjoying it again. No, I don't know what each day will bring but each day is a gift. I want Rylee to start doing things. She has missed out on so much it breaks my heart. She is WALKING!!!! I am beyond stoked. We were not sure that it was possible but she is doing it. She is not stable and her hips are bad but she self corrects so with time I hope she will be strong enough to fix it on her own. It helps that Mommy use to rehab for a living so I have been able to work with her a lot. Speech therapy has been awesome so far and I hope it continues. I can't wait for her eat normally and talk. She has started say quack quack and ruff ruff. She has also started to sign which helps. She gets frustrated because she can't communicate so all this should help.
Drew is the best big brother. He loves his sister so much. Leaving him again was hard but he is getting better with it. I hate seeing the pain in his eyes for his sister, it is gut wrenching.
Hope everyone is having a great week, we are tyring to make the best of ours:)
Happy Birthday Cindi, Mr.A, Holly and Grandma:)
8 years ago