Not The End...

Well, I was right. She has stopped progressing as much. She can do some of the typical stuff kids do, but it is just harder for her. She can barely climb stairs or playground equipment. When she runs, her feet are turning out again. I feel so bad because I just knew this was going to happen. They should not have taken her out of therapy. I told them that, but I didn't do anything about it when they did, because I thought "Maybe they are right. They are the professionals." But they are not her parents. They do not know what is best for her. The saddest part of all this that nobody understands that Samantha just can't do all the same stuff as kids her age. Even family. They think she can do all the things my little brother who is her age can do. And they make her feel bad when they say something about it in front of her. To be honest, if you see her out somewhere, you wouldn't think that she couldn't, but if you actually played with her on a playground or something, you would be able to tell. 


So now, she has another appointment on the 4th with PPS to maybe get fitted for orthodics again. The doctor said she wants to have her checked out. Even if she doesn't get them though, it will be nice to get some of my concerns out about her. Like when you hold her, she is literally 40 pounds of dead weight because she just help you. And I don't know...I just don't get it. What happened? 

This is bothering me...

I hate telling Samantha that doctors always make you feel better just so she will be excited about check-ups, because I know that is not always the case. I know it isn't as important to know what was wrong now that Samantha is doing way better than she was before, but it would help me to have a name. Not just a guess, Cerebral Palsy was one guess. They never tested, and they never said anything more. Some doctors would give her individual diagnosises, such as hypotonia, dysphagia, developmental delays, midline aversion...but what causes these things grouped together? No doctor could give us a name. And I still see her lacking in some areas and I wonder if having a name would help us help her. She still can't really walk up stairs or support herself very well...What if she starts to get behind again as she gets older? What is it? What could it be? I wish I could have an answer.

Now that I have told her story...

It has been awhile since I have posted on here, and for that, I am sorry. I figured since I have already told her story, it would be nice to tell ways to find help. I am not an expert on how to find help, but I know how to direct people to people that can find them help. First, always start with your Primary Care Physician. Usually, if you are going to their office, that means they are a fairly good doctor. I know that is not always the case. And even if it is, often times they will brush you off. Mine did. They see so many patients during the day, and it seems the only ones that are checked out are the ones that have major illnesses or disabilities. It sucks for those that want to get things fixed before they become a problem. Sometimes disabilities go undiagnosed for years. The next thing I did, was go to the daycare my daughter went to. (Usually, this is not the next step, but I was only 16 and I needed someone to back me. Plus, she went to an Early Head Start Program, and part of their job is to detect hdevelopmental delays in children.) They referred me to the Health Department in my area to a program called Babies 1st. I signed up for the program when my daughter was born and forgot about it. Babies 1st is a program meant to help with anything the family needs through referals. If you are homeless, they will refer to a program that can help you find somewhere to live. They even help you with medical bills for certain sicknesses or disabilities if you don't have insurance. Don't have a carseat? They will help you get a brand new one for free through a class they have there. And they referred me to the Babies Can't Wait program for Samantha. Which, I have already gone over the story of the initial visit and all. Not all areas have the same program, but many areas have a Babies Can't Wait. They work with children until 18 years old. In which case, if they are still in therapy due to a car wreck or a non-curable disorder, they will be sent to a new therapist and they will continue their therapy, obviously. Here is the site for Babies Can't Wait in Georgia. It should have all the contact information in it. You will probably have to contact them or google to find another state.
http://health.state.ga.us/programs/bcw/