We did, however. All the schools were cancelled. I think the news said more than 200 schools were closed that day. Our appoinment was at 10:30, so we needed to leave early in the morning. We ended up dropping Hayden off at my parent's house around 8:00 am. I figured we should get on the road right away, because who knew how bad the roads would be. We ended up getting the the hospital almost an hour early. Once we hit Livingston County, the roads cleared up because they were getting more rain than snow. So, we took the long way around the hospital. I had never been there before, but Tony has on several occasions for work. We parked in the ramp and then walked to the Mott Children's Hospital. Next time, we will be taking a stroller. It wasn't the shortest walk ever.Once in the hospital it was like a maze. Neither of us had been there before, so it was kind of a guessing game on where to go at first. We entered on the third floor and had to take the Clinical elevators to the sixth floor. That is where the neurological department is. We were about 45 minutes early for our appointment. Tony had to talk to registration on the phone before the woman could check us in. There was only a single form to fill out, a medication form, so it was really quick. The waiting room was really nice. It was big, had comfortable chairs, a tv playing the Disney Channel. Tony figured we had a while to wait, so he went to find the cafeteria for some coffee. Before he returned, we were called back. They actually took us early!
They first took Bella's vitals, which she absolutely hates. So, of course her blood pressure was a little high. She is not a fan of the blood pressure cuff. We then were taken to an exam room where they wanted to take a naked weight, which was new for us. She then had to stay just in her diaper until we left. We figured that Dr Dowling would be coming in next, but that wasn't the case.
Before the doctor came in, three women came in. I am not sure exactly what their titles were, but they were there to observe and ask questions. The one woman asked the majority of the questions, which were basically background information and why we were there. When they were done asking their questions, they told us they would be discussing our answer with the doctor and that he would be in shortly. When Dr Dowling returned it wasn't alone. The three women came back in along with Dr Hornyak. Dr Hornyak is an MD who specializes in Spinal Injury Medicine, Physical Medicine and Rehabilitation. Both doctors did assessments of Bella, which wasn't the easiest. Bella has this horrible fear of doctors. She was her normal self with the three women, but as soon as the doctors entered, her demeanor completely changed. She is like this with every doctor we have seen.After their assessment, Dr Dowling discussed things with us. He said that he thought she could possible have Spinal Muscular Atrophy, SMA. He said that is very common. I was thinking, "Really? I don't know a single person that has it." He ordered a genetic blood test to be ran to test for SMA. This was going to be the first step. The next step depended on the results of the blood work. If the test is positive, we will be given a follow up appointment as soon as possible to discuss what to expect in the future. Bella will need to start seeing a pulmonologist right away so they can monitor her lungs. Dr Hornyak would then decide if any equipment would need to be ordered or if more physical therapy would be needed. If the results came back negative, a muscle biopsy would then be ordered. They would use general anesthesia and make an incision in her thigh about an inch long a remove a piece of her muscle. The next time we would see Dr Dowling would be when those results came in.
Of course, Tony and I had a ton of questions and luckily he listened and answered them all. He said most children with SMA never walk. Even those children who had walked before, more than likely never walk again. He said that there were four different categories of SMA, but the blood work doesn't show which category a child falls into, only if they have SMA or not.
Obviously, this is not what we wanted to hear at all. We were really quite devastated. We both looked at each other and just stared in disbelief at first. How could our daughter be healthy since birth and then all of a sudden have something like this? Why? I just don't understand it. We had to pull ourselves together enough to take her to get her blood drawn. Something you really want to put her through after getting such bad news.
So, we got back on the elevators and went down to level 2, where to lab is. Luckily, we didn't have to wait too long, even though it felt like forever. I really didn't want to cry in front of Bella. She doesn't like it when people cry around her. She gets upset because she doesn't know what is going on. I had Bella sit in my lap for the blood draw. I had my right arm around her waist and had to hold on to her left had with my hand so when would grab for the needle. The last time she got it drawn it went fast. They seemed to know what they were doing and got her vein right away. Unfortunately, this person didn't do so well. He missed her vein and instead of trying again, he fished around for it in her arm. They finally got it and it was over, but she still has a bruise on her arm, a week later. Now, we just have to wait for a phone call from Ann Arbor. They doctor said that the results used to take months to get when they had to send it to an outside lab. However, the hospital now did this type of test so the results would come back quickly. His idea of quickly is 4 weeks. Ha, 4 weeks! Before we left, however, the woman who will be calling us with the results spoke with Tony. She said hopefully she would be calling us within 2 weeks with the results. One week down, hopefully only one more to go.
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