Coming Up for Air

There are days when I feel as though we are drowning. Every day seems to bring its own set of struggles for Ashley Kate. This morning she just needs air. Simple everyday, in and out, oxygen. Most of us never even think about taking a breath. It just happens for us naturally. Today Ash is having to work for each and every one. This can get so frustrating for her and for me. She is on oxygen, has had a breathing treatment, a chest x-ray, and we just sent a viral panel from her nasal washings. All of this before noon and before rounds. I feel as though we need to string together one or two good weeks with no issues and then we will be on our way home. The trouble in that plan is getting those one or two weeks. At this point we have the ability to string together one or two days but past that it just isn't happening.

Yesterday marked 7 weeks of vomiting for Ash. There is no clinical indication that we have been able to find anywhere that is causing the vomiting. Since she doesn't show a reason for it then no one is concerned about it. I was told other than the inconvenience of it there is no reason to worry about it. Ash doesn't inconvenience me in any way, and as long as everyone thinks she is safe then I will try and stop worrying about all of the retching, gagging, and vomiting.

Despite our respiratory issues, I think she is doing well. She is currently on the floor on her play mat surrounded by her books and a basket of toys. We have done some work on her tummy, and some standing work. She has become very, very weak the past month and half. Her little arms and legs shake and shake as we attempt to re-gain the skills she had acquired. Dave and I have done some reading and some research as we are looking into some program options for her. We truly believe Ash has the potential to reach her milestones and to live a somewhat normal life. We also believe that she has suffered some mild injuries to her brain and its development. Not only in utero, but also over the course of her surgeries and transplants in the past two years. We read something this weekend that brought new hope to our hearts and a re-newed drive to help her overcome. "Believe in your child and their potential. You have nothing to lose."

That is the key to her success. If we don't believe in her and put the drive to excel in her then no one is going to. We firmly believe God has a plan for Ashley Kate. There are days when it becomes difficult to see past the current circumstance, and then there are those days that He allows us to be encouraged by something new Ash learns or does. Ashley Kate is no longer in rejection, but we are facing a whole set of side effects and current struggles as a result of this episode. If we could just get to the place where she is back home, living life, working with Ms. Sue, and playing daily with Blake and Allie, then I think we will see drastic changes in our sweet girl once again. Your continued prayers for her recovery are so appreciated. I would like to say that we are days away from returning, but the likely hood of her surviving the RSV,cold, and flu season in the hospital are not very promising. We had hoped to be moving her into the cooperative setting away from the other patients and the traffic flow today, but her respiratory distress this morning has put a halt to that plan.

Over the course of our visit, I had the opportunity to talk one on one with Blake and Al about Ash and our family. Just touching base with them and their thoughts about this latest separation. Allie and I were loading Ash and her pumps, and tubes, and machines, and IV pole in the wagon to go outside for a few minutes and I light heartedly asked, "Is she even worth all this nonsense?" To which my Allison replied, "OF COURSE SHE IS, MOMMY! She's my sister." A couple of days later Blake and I were in the car alone and we began to talk about Ash. I asked him if he thought we were making the right decisions for her or if he would do anything differently? He wondered what could we have done differently. I shared with him that some people think we made the wrong decisions for our family and for Ashley. This is how he responded to me . "Mom, I think thats why God gave Ash to us. He knew we wouldn't quit on her and He knew we would do anything for her even if it was hard. If somebody else would have taken her then they may not have tried so hard and she deserves for us to keep trying. This is what we do and I would do it the same way you are." With tears running down my cheeks I told him with all the sincerity in my heart that I loved him and could not be prouder of who he is. He just shrugged his shoulders and said, "Thanks, Mom."

We are all coping, and doing it to the best of our ability. These days are hard on Ashley Kate. They are hard on her family, but we are all committed to each other. I love my kids. All 3 of them and we are more than blessed in this life. I miss them like crazy and I can't wait until Thanksgiving because that will probably be the next opportunity we will have to all be together. Thank you again for your prayers and your support. She is tougher than most would think and determined to get out of here. Have a great day. Trish