Lots going on, part two

So, this past thursday, Ryan was seen at our local St. Judee affiliate again. We have been seen there over the last 1 1/2 months. Ryan saw Dr. Al thursday, we had only met him briefly two weeks prior. He had reviewed his chart and history, examined Ryan, and we sat down to discuss what the next step is. I have had, for a long time, a since of dread looking forward to the withdrawal of Ryan's medication. I do not feel like his immune system will work on his own. I can only pray that the medication has allowed his body to heal itself and will work to fight off disease, viruses.
So, Dr. Al said that if his blood work comes back normal then he goes of medicaton. Well, I checked, its normal. So when I call on thursday my guess is that is it for medication. I do not know how long they will wait to repeat blood work, all I know that in our conversation, Dr. Al said they are limited in the treatment he can receive here and that although he know the most about Immune Def., he wants Ryan to be seen by the Immunology expert in Memphis. So when I heard Memphis, I wanted to bust out in tears but I had to many questions. I really do not know when he will go, what will happen, or any specifics. I know that Dr. Al said he will not ourgrow this as the defect in the gene will not go away. What happens as kids get older, they are not in others personal space as much so the level off infection goes down. He said treatment would be different than what it is now. He also stated he thought once a week infusion were alot for a almost 4 year old, and thought monthly IVIG at St. Jude would give him better benefits. While I know that his sinus infections were vastly different, the reaction he had was awful. So, as I said this is all up in the air. We are taking one day at a time. Im sticking with school full time. Thank God for online classes. Ryan is still having breathing problems. We went swimming today and the poor kid was huffing and puffing, but it did get better. Maybe the deep breathing helped.
While I was shocked at first, then terribly sad, and am still sad, I know this is the best treatment for him. I know that I have every confidence in managing his health, and that not one other person knows more about his problems than I do. Ryan is a blessing, in all his sickness, he is a true blessing, and I am so proud and lucky to have such a sweet boy. There is one side of me that is fine with all that has happened in his short life, every struggle, every tear, every night awake in a hospital by ourselves, then the other part of me wants him to run and not baby his right foot, not have to worry about building muscles in his legs so he can do those sports he may choose to do, not having to worry about his breathing or if he needs to be infused. Its a tough fight those sides. What is nice is those special moments laying in the crib in the hospital singing songs, or watching him walk for the first time at Easter Seals. Special moments that others could share with us.
Again, day by day. We are fine, I have moments, but we spent some good time together this weekend and that helps mom.
So, as I know more about Ryan, I will post on here. I am going to continue with swim lessons, soccer, hockey games, chiefs games, all the things he enjoys. I will be continuing school as I want to be finished and running the pediatric oncology unit very soon. :) I will be looking for more reliable transportation. If we are going back and forth my 96 Buick, well it may not get us there or home.
Ryan is asleep and I thought I would put up another update. Just finished an assignment and off to read a couple chapters before bed.
Lots of prayers would be fantastic.

Hope you all are well and we love comments, so feel free to chat here.

Bless you all,
The Kunkel's (Becky & Ryan)