This is the adorable headband that Debbie sent Ava. Did I happen to mention that they live in England? Everyone loves it here.
Well today went a little better. She started off pretty rough but as the day gre she felt better. She is still throwing up BUT she is drinking as well. More towards the afternoon things started staying down a little better. When they did rounds this morning I told them I wanted her off Reglan. I was reading up on it at 4 am this morning and it can cause nausea, restlessness, insomnia and many more symptoms that she was having. They agreed. So I think it takes a little time for it to get out of her system.
They told me that they were doing a swallow study test today but guess what they never did! I just am a little upset when someone says something and nothing gets done. So frustrating. The burn team was supposed to come and look at her arm last week and they still have not come. Do I have to hit them over the head or what?
My sweet Mother came again today. She brought me fried chicken and homemade macaroni and cheese yesterday Today she cooked me chili. She is simply the best. Mom if you are reading this I know that you feel helpless and you are hurting especially bad seeing me and Ava hurting. We want you to know that youpresense and you ability to soothe me makes my life so much better. I love you so much. Here are a few pictures of her today.
Mommy snuggling with her baby.
I can't miss a single part of Barney. The tag book - Barney uh Barney wins.
Gram comforts Miss Ava.
Thanks again for all the cards we have been getting. Stacie I promise I will call you soon. You, George and Addie are all in our hearts. Ava is just so much more mobile I just can't leave her for a second. We miss you guys.
Keep the prayers coming. I also ask that you keep another cdh family in your prayers. Their son has been in the hospital for many many months and they just gave them the news that his lungs are not working properly. Their tough decesion is to let him go or do a lung transplant. Davida you are on my mind. To read their story you can go to www.carepages.com and his page is lukejones. I have many cdh friends whose babies are still in the nicu, have just recently left, or that have reherniated like our Ava. I want you all to know that God hears our prayers and He is here.
Love to all!