These people are the nicest people I have ever met. I am not sure what I would have done without them. They have somewhat put my mind at ease since the trip... My Mom called me up one day and asked what I would think about having Sami seen by the Shriners. I couldn't understand why she was asking me that. (I didn't know much about them. The only thing I knew is that everytime they are outside saling Pecan Logs, my parents buy several. They say it is for the best cause they have ever known. I never realized how true that was until March.) She told me what they were all about, which I will write about in a different post. Then she proceeded to explain she had a friend, Susan, whose Dad was good friends with a Shriner. His name was Jerry Bradwell. She said that she had talked to him about Samantha's delays and how nobody would listen to me, mostly because I am just a teenager. What do I know? Mr. Bradwell said he understood that and that he really wanted to sponsor MY Samantha! Can you believe that???! I was SO ECSTATIC! I was almost in tears. He was very excited about it too because he hadn't sponsored a child in a long time. He sent me the paperwork immediately and I started working on it as soon as it was in my hands. I had to fill out a full questionnaire about what Samantha can and can't do, a medical history, etc. ect. One question asked what she had been diagnosed with, so I put Dysphagia, Midline Delays, and Hypotonia. They also sent a pamphlet on what the Shriners are and a little pocket calendar with their name on it and a few other little cute objects. Before I could send it in, I had to get copies of all of her medical records faxed in. There was A LOT! I decided to get copies for myself too and keep a file folder. I got a call one day saying that Samantha was rejected for the initial evaluation. I couldn't understand why. The lady said Samantha sounded like she had a nerve disorder and they couldn't do anything to help that. So I called up Mr. Bradwell and he was VERY angry. He talked to the head director of the hospital and got it pushed through. He said there was no need for Samantha to get denied when they haven't even seen her. Next thing I know, I get a call a few days before our appointment that asked if we willl be able to attend. As shocked as I was, I told her yes and then asked if the temple we go to was the one down the road from my house. The lady sounded confused as she said, "Only if you live in Lexington, Kentucky." So Jessie took off work and away we went. They provide transportation if you need it, but Jessie and I decided to make a mini vacation out of it since Jessie had family in Kentucky he hadn't seen in 9 years. Plus, we felt like Samantha deserved a reward. We left out on Wednesday night. (Her appointment wasn't until Thursday and afternoon and we didn't leave until Friday.) The drive up there was LONG-8 hours. I had so much packed, but couldn't get to it. And even if I could I wouldn't have any room to do anything in our little shoebox car. (It's a Chevy Aveo.) Anyway, we kept each other busy. We played games and Samantha and I sang to Jessie. She took a nap for a few hours, but then she woke up irritated since she had been in the car forever. We only took one or two quick stops. We just wanted to get up there. It was late. We weren't going to leave until Thursday early in the morning, but we were afraid to hit traffic and miss our appointment time. We stopped off in a small town in Kentucky called Williamsburg where Jessie family lives. We didn't expect to see them though and we didn't have their number or anything. He hadn't talked to them since he was a kid. We stopped into Pizza Hut for dinner and what do you know. Jessie's cousin worked there. It took him a minute to recognize her and then they both freaked. She invited the whole family down there and so we visited for awhile. We didn't get to the hotel until...LATE! We stayed real close to the hospital and even got discounted rates because we were there for the Shriners. It was supposed to have a HEATED indoor pool, but it wasn't so much heat or indoors for that matter. The heat pump was broken and the pool was surrounded in glass. It was still Winter AND we were up North. Therefore, we didn't swim. =) We got up the next morning and had breakfast and got Sami ready for her appointment. When we walked in the door, I was blown away. Thinking about it makes me feel as if I am there again. That place was HUGE!!! Even the ceiling seemed to go on forever. There were children everywhere. Some you could tell why they were there. Others, you could not. Samantha was one of the ones you could not. The walls were filled with plaques with the names of people who make large contributions. Everything was laid out nicely with plenty of room and there were childrens' toys everywhere. Stuffed animals were displayed as decoration and there were bead toys between every row of chairs. There was a room filled with toys and a tv. And tables filled with blankets and stuffed animals. One lady came up and offered Samantha a blanket and a Beanie Baby. Those little things really seemed to cheer up the children around the room. You could see them tossing the Beanie Baby up in the air and other cuddling up with the blankets for comfort. Some children looked like they were used to it and others looked completely terrified. We took Samantha into a little cubicle to sign her in and provide all of our proofs. They asked us to sit in the waiting area until her name was called. They were so nice and polite. I do think that is the very first time I have ever been treated like an actual adult and not just some "teen mom" who doesn't know anything. They called her back and measured and weighed her. She wasn't very thrilled about being measured because she doesn't like being touched by strangers. (That is a good thing. =0) So they gave her some stickers and she was pretty happy. Then they took us into a back room. The rooms were crazy! They had all sorts of childlike paintings and toys on the wall. They had me take off everything from the waste down except Samantha's socks and brace...and of course diaper. So I guess that only leaves pants and shoes. Then they asked some questions and wanted to see Samantha walk. She said Samantha had an abnormal gait. It sort of looked like her hip bones were out of their sockets, so she sent her for xrays. By this time Samantha was already mad because of all the strangers and on top of that, she was tired and hungry. So they told us after xrays, we could go get some lunch. Xrays didn't take that long. They only did a few of them, focusing on her lower extremities. She wasn't happy about that either. They had me take off her diaper so afterward they gave me another. I told them I had one, but they insisted. Then we went to lunch. On the way to the cafeteria, we saw just a small portion of the hospital. They have all sorts of stuff there for children who are staying for extended periods for surgeries and such. There was a gym and all sorts of activities that were specialized for children with all sorts of disabilities. For lunch we had hot dogs and chips. It only cost a few dollars for us to eat. I was shocked. I figured the cafeteria is where they tried to make most of their profit. But it seemed that the prices only paid for the food itself. One man, a volunteer, helped me with my tray since Jessie had all the bags and two trays (one for him and one for Sam) and I Sami and one tray. He even went and got napkins for us and a highchair. And when we were done, he insisted on cleaning it up for us. When we got back to the room, the doctor came in and checked Samantha again. However, he said the same thing as the other doctors. He said he looked at the xrays, and nothing. He said she has Hypotonia and that until a specialist can found out what is going on, (possible nerve disorder, not for sure) he can't tell me why. As far as her ankles go though, one of the reasons she turns her feet out is because she is flat footed. (Which I later asked Natalie about and she said, "No, she isn't. All babies are flat footed. They don't develop arches until they are AT LEAST two." Which is a lie because I have looked at infants' feet since then and they all have arches.) All of these things, they could do nothing for. They would have put her in therapy, but since she was already receiving it, they could do nothing more. He also went on to say that as of that point in time, 18 months old, she was almost caught up. However, she is now in their system, so if anything else did happen again and she did fall behind, which is possible, they would gladly accept her back without having to go through the registration process again. So we left. We spent the night again and then went home. It was good to hear from a doctor who knew what he was doing. Although I still worry from time to time, he was right. Samantha was catching up. And shortly after her appointment, she was released out of therapy. I truly believe that it was the early intervention that helped Sami. Before therapy she wouldn't even move. And although I know as they get older they get stronger, I do not believe she would have gotten much stronger without the help we received. Without the therapy, without the treatments, without the appointments, without the aids.
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