I can't believe it has been over a week since my last post. It has been a little crazy around here trying to wrap our heads around all the new information. However, I finally have a couple of free minutes while both kids are asleep and Tony working.
So, as you may recall, the first people we saw at the hospital went over Bella's test results and other basic information about SMA. We were then joined by the team PT, Betsy, and Dr Hornyak. They were both there to answer any questions we might have. The one question we had was whether or not we could potty train Bella. Was there a point in trying? Would she even be able to have control over that? We were informed that most of their other patients with SMA have control and it would not be a waste of time to potty train her. If for some reason she lost the capability to control urination, she would have a cath, but that isn't something we should have to worry about any time soon. Dr Hornyak also gave us the signed paper for a perminate handycap sticker. Who knew that perminate only means 4 years in the eyes of the State of Michigan? We asked about more therapy and a motorized wheel chair. We were told that there wasn't any need for more therapy at this time. Bella can't build muscle, so the therapy needs to teach her how to do as much as possible on her own and to learn her limitations. The wheel chair they don't want to order until she is 3. They said the insurance companies don't normally want to pay for a chair when a child is under the age of 3. We didn't have any more questions at that time, so they left and we were joined by Dr Dowling.
Dr Dowling is such a matter of fact guy. So far, he has left a very good impression on both of us. He just came in to ask if we had any questions for him. We asked for a script for the Albuterol. He said he would have Bella try it for 6 months and then judge at that time whether or not she has shown any improvements while taking it. He brought up the motorized wheel chair and said he would like to see her in one as soon as possible. We brought up what Dr Hornyak had said about waiting until Bella was 3 to get one, but Dr Dowling said he would talk to him about that. He said that it isn't proven, but children with SMA seem to be scary smart and can pick up things such as driving a wheel chair rather quickly.
Rosangel, the Clinical Coordinator, then came in. She had information about one clinical trial that was currently happening at Columbia University in New York. She said that if we were interested that she would contact the main person for the trial and give her our information. Tony and I both agreed that we wanted her to give our information to the clinical trial. Anything that could potentially help is of interest to us.
The SW, Jefferson, then came in. He spoke to us about Children's Special Health Insurance. He was going to start the paperwork for us that day and we would get the rest of the paperwork in the mail from the State in a couple of weeks. This insurance will pay for everything that BCBS will not, which will be so helpful. The price of the wheel chair alone is around $30,000, and kids normally out grow them every five years.
Colleen, the representative from the MDA, popped in to talk to us quickly. She just had a little information to give us and put Bella on the MDA registry. Apparently, SMA is included in the list of diseases covered under MDA. She told us she would be sending more information in the mail for us to look over.
The last person we talked to that day was Kim, the Clinic Coordinator. She is the person we would contact about pretty much anything. She would be the one to set up future appointments with Dr Dowling. She informed us that we would be getting a phone call from the Pulmonology group regarding Bella's first appointment. We would be seeing them hopefully soon and we would need to come back to see Dr Dowling in six months.
When we left, Tony and I actually felt a little better. Everyone was so nice to us and so very helpful. It was a lot of information, but we didn't feel overwhelmed. It was actually rather humurous the way everyone kept popping in to talk with us. It is going to be a long road, but I feel like there are a lot of people that really care about Bella and are willing to do anything they can to help us get through this.
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