I can't begin to know why such terrible things happen to the most beautiful, innocent, amazing children. They shouldn't have to hurt and suffer. Their bodies shouldn't deteriorate before they've even had a chance to live. I know that God has a purpose for all of us, but some days I just want to ask him "WHY?" I want it all laid out for me.
Just this week, I joined a group on Facebook for a little girl here in Charlotte who was battling stage 4 Rhabdomyosarcoma. This morning, she passed away. She was only 8 years old, and she had such a willingness and joy to live. It broke my heart to read her mother's journal entries as she shared with everyone her little girl's final few hours. I know the hurt of watching your baby suffer, of knowing there is nothing you can do for them other than hold them and love them. I came close to knowing the pain and loss that this mother is feeling now, and I am thankful for the second chance I got. My heart goes out to Potvin Family. I pray for them to continue to stay strong and faithful and spread that love and faith they have as they go through these next few days, weeks and months. (http://www.liftupellie.com/)
It's been a long week so far, as you can probably tell... Aidan had an appointment with his neurologist on Monday morning. I wasn't able to go to it because someone needed to stay home with Evan and Graceyn, so Russell took him. They discussed how Aidan's been doing and went over some of his meds, and then discussed trying a ketogenic diet. The doctor was surprised we hadn't looked into it sooner and thinks that it will help Aidan. Considering that he "specializes" in this kind of diet to treat seizures and other conditions, I would have thought he would have suggested it sooner if it's something that would help with Aidan's seizures. So we have an appointment on July 1st with a nutritionist to discuss it and see what we need to do to get started. After that an appointment will be set for him to be admitted to the hospital for a few days while they monitor him on the diet and educate us on how to follow the diet. It's a very precise diet, and has to be monitored closely. The benefit of the diet is that we could possibly decrease his seizure activity and meds and possibly eliminate the meds altogether.
Monday evening, I noticed that Aidan had some drainage out of his right ear. I went to clean it out and he flinched every time I touched his ear and then began crying when I put a little more pressure on it to clean it with a damp cloth. I called his doctor and left a message on her cell phone. Luckily she got it (she was at the beach) and gave me a call back. I had to take him to the office Tuesday morning for the nurse practitioner to look at his ear. Anyway, Aidan has a pretty nasty ear infection, most likely from getting pool water in his ear when we took him and the kids swimming last week. I didn't think that he had gotten any water in his ear, but it looks like I was wrong. So now we have some ear drops and hopefully it will clear up soon.
On a good note, his heels are almost completely healed. I'm so grateful for that because they looked terrible. We are still waiting to hear about doing the baclofen pump, though. The surgeon is concerned that the pump might be too big for Aidan's abdomen right now.
Today was Aidan's modified barium swallow study. He did really well and is now able to eat nectar thickened liquids. This is an improvement from the last study. We're hoping to start vital stim again soon.
So for now, that is all that is going on with our little man, Aidan. He is doing well. I just hope and pray that we are able to find a way to get him somewhere for stem cell therapy. I still feel like that is our best hope for significant improvement in his condition. There are so many things that we want to do for him and for our family. Therapies are so expensive and most if not all that we want to do are not covered by insurance, we need a home that will accommodate Aidan's and our entire family's needs. We have seriously out-grown this apartment. Our van, which is our primary mode of transportation for Aidan is in dire need of work. I'm just praying that it doesn't crater on us any time soon, because we just don't have the money to fix it if it does.
Evan's 3rd birthday was yesterday, and we are having a small party on Saturday with family a few friends. I'll try to post some pictures on Sunday.
Thank you everyone for your continued thoughts and prayers for Aidan and for our family. We're so lucky to have so many people who care about us all.