DD's Story Shriners

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.

DD's Story Orthotics

Several times, during Sami's PT appointments I would ask, "What is wrong with Samantha? Why can't she do what other kids can do?" And I would always get the same reply. "There is nothing wrong with her. I have had much worse." But that is not what I asked. There is always a worse. But anyway, she would proceed to explain that she had a lot of children with Hypertonia that had to have treatments done every week and so on. But that is NOT what I asked...
From the time Sami started crawling, Natalie noticed her feet turned out slightly. However, she attributed it to just being a new crawler. Finally, when she started cruising, Natalie noticed it got even worse. Samantha would walk on the inside of her feet and on the back of her heels. And when she started standing, her feet would sort or bow in and she couldn't keep balance.
Natalie's first attempt to correct this was orthotics. They were small inserts that went in her shoes and supported her foot because she has no arch. She wore those for a month or two, but they just weren't working.
So Natalie referred her for an appointment at PPS Orthotics and Prosthetic Services so that she could get leg braces. Oh NO! All I could think about was Forrest Gump. Everybody was going to laugh at her and I wasn't going to be able to do anything about it. I worried for days. I wanted her to have them. She needed them. But I didn't want people to stare at her-even if she is still just a Baby. Then Natalie noticed that most of the problem was in her ankle muscles, so she ordered her to get ankle orthotics instead.
We walked in the door and it was like no place I had been before. There were prosthetics displayed everywhere. And older people filled the whole front of the waiting room. Aside from the fake legs hanging on the wall, it was very...plain. They finally called her back and tried to get her to cruise so that they could see her feet. He also felt around her legs and had her stretch and tested her reflexes. The doctor decided her definitely wanted her to have the orthotics, so he cast her feet. She didn't like that at all. She screamed for a long time until she finally accepted it. The rest of the time, she just stared at me. First he took this paper and painted over it with a solution that looked like glue. After he covered her whole foot and ankle, he waited for it to dry. Then he took a blade and sliced down the middle to get it off her foot!!! I was so scared!
He went through some papers on her and asked if we had any questions. So, I asked him why her feet did that-since Natalie always seemed to avoid answering me. And he went on to say-very nonchalantly that, "Of course you know she has Hypotonia..." After that I didn't hear much since I DIDN'T know that! Nobody ever told me that! So I started shooting off questions. What is it? How do you get it? How do you know she has it? He explained that it means she has VERY little muscle tone and that she WOULD grow out of it at about age eight. The reason, unknown, since she has not been diagnosed with anything more serious. And when he felt around her legs, he could tell most of her muscle tone is weak on the lower half-trunk down. This made me so angry. Natalie had been her therapist for almost a year. How do you miss that? How?
She went back for a follow up a few weeks later and they put the braces on her. They showed us how to get them in her shoes and once I looked at it, it wasn't so bad. Samantha took it pretty well. She fought it a little, but it didn't take her long before she thought of it as normal.
It breaks my heart when I think about all that she has had to "accept." She Loved her braces. She begged to put them on. And she still likes her Thick It. When she is thirsty, she will get the huge can out of the bottom cabinet and say, "A Cup?"
The First Picture is the molding for her foot and the Second is an image of some inserts, but not hers. And the Third picture is a pair of Orthotics-not hers again. Hers were white with a pink strap. I will try to post pics of that later. I keep them tucked away in her memory box since she doesn't need them anymore.
Here are some links about Hypotonia.

http://www.nlm.nih.gov/medlineplus/ency/article/003298.htm

http://www.childrenshospital.org/az/Site1106/mainpageS1106P0.html

DD's Story Dysphagia

It's not over yet...I had been worried since DD started on solids. For some reason it seemed like she couldn't swallow them. She even got choked on those melting cheerios. You know, the Graduates ones that are supposed to melt in their mouth. And this was at a year old. Time after time I would ask the doctor what is wrong. They would say, "I think she will be fine as long as she is not turning blue or anything." Finally, at her one year check up, I asked again. This time, I found some answers. They looked back in her chart and saw that I had been concerned about it for awhile, so they set her up a swallow study so they could see what was going on. She had to see a specialist, a speech therapist. I took her to T.C. Thompson and when they brought her to the back, they put a yellow slip over her clothes. They set her up in a seat with a belt. It sort of looked like a car seat. She didn't like that I couldn't hold her, so she went to screaming for me. But we gave her some toys to keep her calm. They asked all sorts of questions about how long she had been choking and what she usually had problems with. They asked what she drink out of and what her favorite foods were. Finally, a lady came out and started making Sami a drink. It had something in it. It looked like a paste, but it was that stuff that made it easier to be seen on the xray. The test they did was called a Barium-Swallow. They saw that she was "aspirating" and went to work. They said that meant that what she drink was going into her lungs when she swallowed and part of it was going into her voice box. They were really concerned, so they started testing different thickness for her drink using a product called Thick It. It is just a powder that you mix in making the liquid thicker and easier to swallow. Sami didn't seem to mind. She just got mad when they took her cup away to make it thicker. They were making a video of everything so that they could go back over it later. The only thing I didn't like is I wasn't allowed to watch because I had to keep her facing forward. They said they would let me watch the video afterward so I could see what was going on, but they didn't. After they made their final conclusions, they decided to diagnose her with Dysphagia. (Her muscles are not registering like they should when she swallows.) They told me how much Thick It I would need to start putting in her drinks and that she would have to have it in everything. She is on Honey consistency. Shortly after I informed her therapy office, they offered to put her in Occupational Therapy. Her therapist, Amy, was an older woman. She was sort of rude at first, but she really did help me out in the end. This therapy was different than her physical therapy. Sami didn't have to do much here except eat a little and then she would tell me what I needed to work on with Sami. She wanted me to have her work on using a straw so that she could not tilt her head back and she wanted me to take certain things out of her diet that made her choke. She also informed me that Samantha was not allowed to have tea OR PLAIN WATER! She said Thick It will not chemically bind with tea and water has no taste, so she will not register it anyway. She can only have FLAVORED water. Samantha's daycare(The Early Head Start) was giving me a rough time about it. They have all sorts of regulations and such. I brought in a doctor's note. What more do they need? They said they had to speak with a nurse...ect. ect. Well, turns out, Samantha's OT used to work for a Head Start and she knows all the rules, so she had a little talk with the manager of Samantha's daycare and I didn't hear a word about it after that. From then on, she had Thick It in all her drinks without me having to ask. She was released from Occupational Therapy about three months after she started. There wasn't much they could do for Sami since it is a swallowing disorder. We finally made peace with it and I got used to putting Thick It in her cups. I use a formula dispenser to carry it. And measuring it out has come as normal to me as making a bottle-only this stuff is pretty nasty. It turns everything into something sticky and it smells terrible if it gets spilled. Her last swallow study was a few months ago. They had asked her to come back and get retested, because usually children will grow out of Dysphagia. Well, she didn't...They did the same thing as last time, but they said it was highly unusual that she hadn't gotten any better at all. Usually if children don't fully heal, they at least build a little more strength and can move up one level in consistency. SO, we will go back in September and if she doesn't pass, they want her to go to an ENT specialist to get an endoscopy.
Here are a few links to learn more about Dysphagia.

http://www.nlm.nih.gov/medlineplus/ency/article/003115.htm

http://www.urmc.rochester.edu/encyclopedia/content.cfm?pageid=P01991

DD's Story Therapy

Fast forward a few months and here we are. Sami still will not roll over. (She is six months now.) She will not sit up with support. She won't even reach for a toy. All these milestones I was looking forward to...Where are they? I filled out her 6 month questionnaire that I received from the heakth department and she failed the physical development. (Whereas, she had passed her 3 month.) I began to discuss it with Children 1st, a county program that I will discuss later.) And they helped me get her into Babies Can't Wait, another county program I will discuss later. For her to be in the Babies Can't Wait Program, she had to have an initial evaluation. They came into the home and circled my daughter and watch her like she was prey. They tested her to see if her cognitive development was right on, which it was. And then they began to test her physical abilities. Their many attempts were futile. They couldn't even get her to reach for a toy. She just stared at it. The tried to assist her in rolling over, but she didn't budge. We went over some paperwork and talked about the program some more and they placed her in therapy a few weeks after.
She began to do therapy for 1 hour once a week. They formulated an IFSP (Individualized Family Service Plan) for her so that they could work with her at school and at home. Her therapist's name was Natalie. She visited every Tuesday at 4:00 p.m. She worked with Sami using toys. She had a bag full of toys-many of which I went out and bought later on just because I liked them and so did Samantha. The one thing she had that Sami really enjoyed was the exercise ball. It was a big green ball, made for adults. She would lay Sami on top of it and sing Wheels on the Bus as she rolled it from side to side. She explained that she was trying to build strength in Samantha's trunk muscles because that is where she was mostly lacking. She had a stacker that you could snap together to make several little balls. (That is what is in the picture. She was a year old there.) Samantha enjoyed therapy at first, until she started progressing. Natalie started having her to do more and more on her and Sami would get frustrated and start screaming. Some days she would scream for the whole hour and some days she would scream for just thirty minutes, but Natalie began to realize that she wasn't going to stop and she would have to leave early. We had to try bubbles and other bribes, but most days they just didn't work. Towards the end of her therapy, she also brought her a Rifton Chair to borrow. (It is also in the picture.) A Rifton Chair is a chair meant for children with special needs. It helps to support them when they sit up more so than a high chair of some sort. This way they can eat and do other things without an adult having to hold them up. Sami didn't need it so much for that reason, but Natalie felt that Samantha would benefit more from it because the big tray that was on the front would help during therapy because Sami would sit in the seat (at eye level) and not on the floor and they could work on fine motor activities such as stacking. She was sort of scared at first, and then she wanted to be in it ALL the time! She would take off the tray, crawl in, and say, "Buckle!"
Her Progression? She rolled over for the first time at almost one year old, but since then she hasn't even really wanted to, even now. She is able to, but she has something that Natalie called a mid-line aversion. She said Samantha would do anything to avoid her mid-line. Most of her problems were in that area, including her swallowing disorder. Natalie worried about that the most, so that is where they spent most of their time. She would even try to make Samantha bang her toys together in the center of her body, but she wouldn't do it. She began crawling after she turned a year and then progress toward walking by cruising and using her push toy. She was walking at sixteen months, with assistance from her braces. I was so proud of her. I almost cried. She had tried so hard for so long and she finally did it! She has made it through so much since the beginning. After a year of therapy, they finally released her with possibility that she may fall behind again and in that case, she could start back. But-she hasn't! She has been doing well.
She still has problems keeping her balance while sitting up sometimes or her ankle turns out like it used to, but those are just minor kinks she will learn to work out for herself. Therapy,for her, was not a pleasant experience, but the rewards she got from it-rolling, walking-they were. I don't know what I would have done without it. Without early intervention, I am not sure where we would be.

DD's Story The Wreck

Hubby finally got his license in January of '09 and we bought a car. It was our first car. It was a '9something (lol)Blue Oldsmobile, Achieva. We only paid $1,000.00 for it and we were so proud to finally be able to get places, including school without my Mom. One afternoon, on the weekend, I asked Jessie if we could drive to Wal Mart because I wanted a new par of tights to go with the brand new skirts I had bought. (I was so proud to be back to be back to my size, well, smaller, so I bought some new skirts that were on sale while I was out with my friend one day. Of course he said yes, so we loaded up and got ready to go. When we pulled out of the apartments, the tires slid. We knew we needed new tires, but we figured it just did that because it was raining outside. But not far down the road, we started sliding again and all I hear is Jessie scream, "HOLD ON!" and I didn't hear anything after that until we hit the ground and Sami started screaming. Jessie was under water and he couldn't get out of the car. When he finally did, he came around to our side, which wasn't under water. And by then the ambulance was on its way and people had jumped out of their cars to help. Samantha was only 5 months and she was hanging upside down so of course we were freaking out, so Jessie punched a whole through the window so he could reach in and open the door to get her. As soon as he lifted her out and she wasn't upside down, she was fine, laughing actually. She had a little cut on her head, not sure what from, but she wasn't really bleeding. After I got out of the car, I ran to get Sami from the lady that was holding her and so did Jessie. They offered to let us all go to the hospital, so we sent Samantha and since Jessie was all cut up, we figured he should go too. But I didn't want to so I rode in the front. (I hate hospitals and I didn't have any insurance so I didn't go.) The only thing that was wrong was I had a bruise on my ear and whiplash. They separated Jessie and Samantha in the hospital because he was 18 and couldn't go to the children's area. So I stayed with her. They told me not to let her eat, so I didn't. Although she was screaming her head off because she hadn't ate in hours and I didn't have a paci because it was lost in the wreck. After about an hour of sitting and hearing her cry, I asked it I could feed her and they said yes. And then released us. They didn't even come in to check on her, so I assumed they just wanted her there in case something happened. The report they sent me home with just mentioned that she had a small abrasion on her head, barely noticeable. (I didn't know until almost a year later, they were supposed to run a CAT scan on her after a wreck like that. And that is why they didn't want her to eat. But they never did run one.)

DD's Story Early Months

As we raised Samantha, we did what we thought was best for her as any parent would. She was in the Parents As Teachers Program so I was taught all the "right ways" to do things. She told me about how important Tummy Time was. She even gave me few toys and ideas on how to keep her from crying when she was on her tummy. So everyday, we sat aside tummy time. I never wanted her to get behind so everything we did had to focus on some area of development. I would tell myself in my head what we were working on. When Daddy and I would play with her, I would say, "Okay, this is Mommy and Daddy time. She is strengthening her social/emotional development."
For her three month check up, we took her in and a nurse asked the simple question, "Is she rolling yet?" I blushed (I was sort of embarassed. I thought-"She should be by now. That is what everyone says...") Then I replied, "No...Is that bad?" She just laughed, obviously used to new parents as she said, "No. That is fine. You don't REALLY have to worry unless she isn't rolling by six months." Which I relieved me because I KNEW she would be rolling by then.

DD's Story Birth

I have posted it on my other blog, so I will post it again, only in greater detail. It may be piece by piece. I haven't decided. But I want people to know they are not alone. Samantha's "conditions" are not as serious as most children by any means, but it still worries you whether your child is a month behind or a year behind. Also, I would like to make a note that Samantha IS getting better-Much better. She is overcoming her "diagnosis" just like the doctors said she would.
When I had Samantha, I was still in high school, but I was just like every other Mom out there. I was the one who documented everything and wouldn't eat anything if the doctor just mentioned not to eat excessive amounts. Samantha was healthy and her heat beat was strong. It ranged from 140-160 bpm. She was a kicker too. But she didn't want to come. Her due date was approaching-the 18th and she didn't come. I knew she wouldn't come. She wasn't ready.
I was induced on the 22nd of September because I had developed toxemia about a week before. But she did not want to come. I told everybody that, but nobody would listen of course. They passed it off as me being just a nervous Mom. They tried everything to get her to come. And the whole time I thought, "I told you so." They had to tried tree different times and 29 hours later, she came.
She made a 9 on her APGAR score, perfect they said because they always take off a point for color. (By the way, one of the things they grade on the APGAR is muscle tone.)
Three days later we took her home.

I Support Early Intervention

It is my passion. Early intervention is seeking help for your child before your worries become a real problem. My dream before I had my daughter was to become a teacher. After I had her, that all changed. My main goal in life was to become a therapist. Although, due to the requirements of the schoolwork I would have, I was not able to complete that dream. I decided to do Medical Transcribing instead. I wanted to be able to be here when she has all of her appointments. Many of which, she does not have anymore. (Thanks to early intervention.) And I want to be here to make sure she stays on track. In daycare, they were doing little to nothing for her and something had to be done. Since I was not able to bring awareness through my dream career, I hope to from home one step at a time. My first step is a small attempt, but it is the only thing I can do right now. I have no car-No money-Not a lot of time.