HAPPY 7TH BIRTHDAY KATIE!

I sit here and think about how much Katie has been through and how far she has come. Seven years ago today I gave birth to a beautiful little girl that was not expected to live. She went through so much her first three years of life and now she is a happy, pretty healthy 7 year old. If you would see her today you wouldn't believe all that she has over come. Katie is definitely a miracle child and I am glad that she is mine and wouldn't trade her for anything. Of course she is hard headed and does what she wants but that makes her who she is. I LOVE YOU PRINCESS, HAPPY BIRTHDAY!

Update on life!

I haven't blogged for awhile and it's not because I don't have time, it's because I haven't had much to say. The kids are doing great and have been behaving so much better.

Katie started Stratterra for her ADHD and it is really helping. Of course it isn't a miracle pill that makes her listen but it has really helped her with sitting and not being so implosive. She has also started in a soccer program and cheerleading is starting again in a few weeks.

Her birthday is coming fast and I can't believe she is going to be 7. This year is the first year that she was invited to friends birthday parties and she really enjoyed all of the parties.

Also school is almost over and I can't believe that next year she will be in 2nd grade. Time has really flown by since she was born. It has been a very eventful 7 years but so worth it!

Sometime Doctors Just P*** Me Off!!

So we went for Katie's testing with what was supposed to be a developmental pediatrician today. This was supposed to take all day. We went there and the Dr. comes out and ask if Katie would be ok in the waiting room by herself. Of coarse not. I told him that wasn't a good idea and that she would be fine in the office with us. He asked me a few questions about her history and family history. (note: Katie was being a brat). Then he gives me paper work and says he will take her into the room next to where I was and try to give her an IQ test. He was gone for a total or five minutes at the most and I could hear him the whole time. He comes back and says he doesn't have any testing that he can do for her. He says she needs tested on an infant level. I inform him that she might be on the infant scale for speech but nothing else. I also tell him that she is very intelligent and that people who don't know her don't understand that because she doesn't talk. I peeked into the room he was testing her in and all that was in there were some papers on the desk and a clock. What kind of testing does he think he is going to do with that. Anyway he confirmed that he thinks she has ADHD and should be on medication for it. I am going to have to think about this for awhile. I left there mad because he acted like my daughter was severely mentally R*******. Obviously he hasn't worked with Downs kids before and does not have patients. Well at least we are on a waiting list for another doctor to be tested.

Why I haven't been blogging

I haven't blogged in a while so I thought I would let everyone know why. Well Brady has been quite the handful. He was going through a period of not behaving at all. It was hard to do the littlest thing like drop papers off at the doctors for Katie's evaluation this month. I spent so much time yelling and wanting to cry that I didn't take the time to realize why he was acting this way.

I have really been working with him and he is really improving with his behavior. I have cut 75% of his sugar out and have been talking to him instead of yelling. I think he was acting like this because for one he ate alot of things with sugar in them and too he wanted attention. He still acts up some but nothing like he was thank god.

Well on to Katie. She has been to two cheerleading competitions so far and has done a great job. She really seems to enjoy this and has made some new friends which is wonderful. We have a few more competitions before summer break and I can't wait.

She is going to a developmental pediatrician on March 27 for a 4 hour evaluation. We are doing this so that I can get someone else's opinion on where she is developmentally and to see if she has ADD.

School and Stuff

So we had our meeting at Katie's school. We aren't getting a PCA but have come up with some ideas that I hope will help. We are going to give her breaks during work time and have come up with some fun ways to learn. We are going to work on colors and counting by painting her finger nails different colors (and yes they are going to do this in school) and also she is going to be rewarded with stickers and have a chart to put them on (this helps at home too). So we will just have to see how this goes and I have another meeting in a month.

On to a different subject. I have seen a difference in her behavior lately. When she went to her first cheer exhibition a couple of weeks ago she was like a different child and sat and watched for 3 1/2 hours. We also took the kids to Washington DC on Saturday and she was very well behaved and didn't through a fit about holding my hand.

Here is something a little funny about the visit to DC. We were walking in the zoo and a man stopped and put his foot up on a ledge to tie his shoe so Katie stopped put her foot up too and pretended to tie her shoe. It was so funny!!!

School

Well we haven't had a meeting yet to discuss the PCA (personal care assistant). It seems that everyone that has to be there can't make it on the same day so we just have to wait a little bit. Good news is that Katie's teacher has removed the rifton chair from the room and they are just going to work on making her sit. She has her good days and bad. The problem lately is that she is throwing work materials when it is work time in the afternoon. I will let everyone know when we have the meeting how it goes.

Our First Cheer Exhibition!!

Well today was our first cheer expedition and I was excited at how well it went. Katie was such an angel. Her team performed 4 times in 2 1/2 hours and she did great. Here are a few pictures.

Cheerleading

Well we went to cheerleading yesterday and it went a lot better than last time. I am not saying that Katie didn't try to run off but she payed way more attention this time. She even learned part of the cheer. This Sunday she will be going to a cheer demonstration with her team at a mall in Harrisburg, PA. I am so excited and feel that with time she will definitely pick up on the whole cheer.

More Frustration

So I got a note from Katie's teacher today asking me to sign something on her IEP. It was concerning the use of the rifton chair (a chair they strap her into). I called the teacher and she said that they don't use the chair everyday but some days have to use it for up to two hours a day. We talked and are going to try to get a PCA (personal care assistant) for Katie. Also we talked about Katie maybe having ADD or ADHD. Well I called her pediatrician and they said that usually the school test for that but they will check into it. Hopefully I don't have to fight with anyone about this. Wish me luck.

Good day and Bad day All in One

Well yesterday was one of those days were I had a break down. I have know for about 7 years that Katie had down syndrome and most days it is no big deal, but every once in awhile I have one of those I feel sorry for myself days. Yesterday was one of these days. I don't know what started it but Jessie said what is wrong and I told him that he just doesn't understand because he has his typical little boys and I don't have a typical little girl. Don't get me wrong I love Katie to death but I worry about the future too much. I worry that she will never go to prom or get married. I am a girly girl and Katie doesn't care about that stuff yet. I know she is only 6 1/2 and has plenty of time to grow up but she is my only little girl and I don't want her to miss out on anything. Well enough about that.

We also went to cheerleading yesterday. Katie and another girl both joined the team yesterday. Katie was sitting very nicely for the first 10 minutes and then they gave her a buddy ( another cheerleader from a regular team who was about 9 or 10). They all began to stretch and Katie was sitting there stretching and I thought wow she is actually staying in the group and behaving. Not a minute later she was up running around. I was getting so frustrated and embarrassed. The other mothers assured me that there kids did the same thing when they first started. Katie finally sat and watched them practice and joined in a little. We will definitely be joining and I am hoping that in a couple of weeks when they go to a competition that Katie will go and do good.

Cheerleading

So after watching my nieces cheerleading competition I got to thinking about how great it would be if Katie could do something like that. So began the search for a special needs cheerleading team. Well I found one in Baltimore, MD which would take me an hour to get too. So then I remembered that I new someone who also had a daughter with downs that had talked about a squad before, so I emailed her. Well she did in fact start a squad that had 8 girls on it ranging in age from 5 -18 who all had special needs.

We went out Sunday to check it out but practice was cancelled so we will have to go back this Sunday. Katie did see some other girls practicing and really wanted to join them. It sounds like this might be something that she really like. The other mother told me that they have two coaches and each girl has a buddy (older cheerleader) with them and that they will even be able to go to competition.

When I left I was excited and a little depressed. The reason for this is I know I am not supposed to compare Katie to other kids but I can' t help compare her to other kids with downs. The other two girls that were there were around 9 years old and both were verbal. Well as everyone know Katie is only a little verbal, not that she doesn't try. I kept telling my self that maybe Katie will talk like that when she is there age (which is 2-3 years from now). I am convinced that she will indeed talk one day but I still worry about it.

Anyway I will let everyone know how practice goes on Sunday!