April

Can you believe we are already almost half way through the year. Wow, time sure flies!!! On April 2nd, Talen saw Dr. Such-Neibar again. She is just wonderful. She is making sure that everything is on track for Talen to get his wheelchair, as well as, a stander, versa forms, neck brace, etc., etc., etc. We also discussed Talen's situation with the baclofen. I have spoken with several doctors and medical professionals and nearly all of them don't think that Talen should be taking baclofen. From what I understand, baclofen causes muscles that are tight to loosen. I believe that they put him on it because at times his arms can be tight. However, the baclofen will affect his entire body, not just his arms. Given that he has a weak neck, I decided that the best thing for him would be to stop the medicine. I may have made his neurologist a little upset by doing this, but I feel that it is my decision to make. So, now we wait to see what our next step will be.

On the 6th, we went up north for several more doctors appointments. Talen had his check-up with Dr. Muntz to make sure everything looked good from getting the adnoids out. He gave us a thumbs up and said that we should have him checked again in 6 months, but it can be done by a doctor in St. George unless there are any problems. While in SLC we also went to see Dr. Humphries and Now I Can (intense physical therapy facility). Dr. Humphries specializes in the hyperbaric chamber and also suggested that we get Talens MRI's looked at to see if he has Ciari I (I am not sure of the spelling). The doctor that will look at them is in New York City. If he has Ciari I, there is surgery that can be done to fix the problem. However, we would have to fly to NYC to have it done. And, yes, it is brain surgery, but at this point I will do whatever I have to to see that Talen has every opportunity available to him. After we know for sure on the NYC thing, then we want to take Talen to Now I Can. They have an amazing physical therapist that would work with Talen 5 days a week, 4 hours a day, for 3 (or 4) weeks. So, Talen and I would have to move up to Provo for about a month, but like I said, I will do whatever I have to to help him out. The only problem is that Medicaid will not pay for it. So, we are probably going to be having a fund-raiser sometime in the next couple months. We will just have to see what happens.

On the 16th, Talen saw Dr. Gooch (eye doctor) he said that Talen is far-sighted and may need to have glasses when he gets older, but for now everything looks good. We will have a follow-up appointment with him again in a year.

Kennedy had her Kindergarten Round-Up on the 23rd. She got to meet some of the teachers and they evaluated her to see what her abilities are so that they can place her in a class. They said that the classes for next year will be posted by the last day of school, so next month, we should know who her teacher will be.

Wow, what a busy month, no wonder it goes by so fast!!!