Emotional Ups and Downs!

Well, we have had a couple of days of ups and downs. Monday morning I attended the funeral for Sister Sourant. It was a beautiful service. When I found out how old she was when she passed, it surprised me that she was the same age as my parents. It's scary to think of losing my parents. I know the time will come and I know whenever it does, I will not be ready. One of Bryce's therapists is also out of town again this week. She is with her mother who has recently been diagnosed with cancer and has been given only 2-6 weeks to live. So sad! =( Then although I try not to let them, my thoughts turn to Bryce. Oh how I hope and pray that he is with us for a very long time!

Speaking of Bryce, I believe I told you about a Dr. in Utah that we have been in touch with about Bryce's condition. Well, he is leaving for Africa for a month on the 11th of June. He wants to have Bryce get an EMG done and this is the procedure which this doctor does. He has family here in Arizona and said that if he wasn't leaving for Africa so soon, he would come for a visit and see Bryce while he was here. I told him that I would gladly come to Utah, but he just doesn't have time before he leaves. So, he got in touch with a colleague here in Gilbert and got some names of some Doctors that he believes could do the procedure and then send the results to him and he could take a look. To make a long story a little bit shorter, the colleague got me some names and after making a bunch of phone calls I found that none of these doctors do the procedure and in order for them to refer Bryce to someone, he would have to be established as a patient of theirs which would take at least a month. Well, in a month Dr. Nielsen will be back and we will be on our way to Colorado for a family reunion. So I emailed him and told him what was happening and that we could leave early and go through Utah. This is the email I got in response:

Hi Tammy:

Thanks for getting back with me about the status of the EMG situation for Bryce. That is amazing that nobody can do that. I would be happy to help out if you wanted to wait until you come through on your way to the family reunion in July. I get back from Africa on 29 June and am around for the rest of the summer. I could see Bryce here and do the EMG studies wouldn’t charge anything for that. Don’t worry about trying to deal with UHC and out of state…it is not worth the hassle and I am happy to accommodate that. We will have to figure out the best day to see him. When do you think you would be coming through Utah? If you need a place to stay, you are welcome to stay with my wife, Jodi, and I. We are alone in our home and have plenty of room (kids are all moved out, yeah!). Let me know what the schedule looks like and we can make plans before I leave as far as when we could see Bryce.

I will stand by to hear from you.

Take care, Tammy.
Rick Nielsen

I was so happy and grateful for his response. What a wonderful person to not only help out, but offer us a place to stay. Between John and I, we have plenty of family there so we will be staying with them and meeting with Dr. Nielsen on the 9th of July. I am so thrilled. I don't know if anything will come from this, but I feel that getting in touch with him is an answer to prayers. We really didn't know where to go from here and have been struggling with that. Now just to sit tight until that time!

The downer of today is that Bryce has been having a lot of trouble with his breathing throughout the day. He has had many non-breathing episodes which are very scary. I was supposed to go to pack meeting tonight as part of my calling. I tried to make it work out, but with John being gone I just could not feel good about leaving Bryce with a babysitter. I could have taken all 5 kids, but I knew that if I did, I would be of no help to anybody there. It tears me apart, because I want to do what I am supposed to do and I don't like letting other people down, but my number one responsibility in a case like this had to be to my child. I just couldn't leave him. I'm sure they did fine without me, it just makes me feel bad. Hopefully tonight and tomorrow will be better, breathing wise, for Bryce.

Now on to the ups of the day! I got a call from Hanger orthotics today and was told that Bryce's new AFO's have been approved so it should just be a couple more weeks of waiting until they are made and sent here for him. It will be good to get new ones that hopefully will fit him a little better until he has surgery.

Bryce's speech therapist was here today and went through some things with Bryce and said that she wishes we had his communication device because he knows everything she should be teaching him for his age. He flies through colors, shapes, numbers, categories, etc. It's amazing! Well, tonight as we were getting everyone ready for bed, there was a knock on the door. To our surprise it was Bryce's previous support coordinator holding a box which contained the mount for his device!!! Happy day. Now I believe we have all of the pieces to make the thing usable. Now just to get it mounted and get the training on how to use it! I will call about that tomorrow. I am so excited that it has finally arrived!