Today we gave in. At three years old, we have finally decided to start Baclofen, given orally. We gave the first dose of 2.5 (1/4) tablet dissolved I water and this will be the dosage for the first week. The second week, we will go up to two dosages per day. Her doctor say that it should help with:
-pain and spasms while sleeping due to spasticity.
-Better muscle control
-Maybe sit better.
I will document all about our journey with Baclofen.
Stay tuned....
Update#2- two weeks into Baclofen
Dosage- morning and night 2.5 each time.
Changes- very slight changes, legs re less stiff, slight changes in sleep pattern, no longer complains about pain at night.
Final update- Baclofen did not work! The side effects were awful (weakness all over her body) moving on to SDR... No matter if the rehab doctor thinks it will not work.
Wednesday, May 6, 2015
Tuesday, January 20, 2015
First Day of Developmental Pre-school at 3 years Old
Dear daughter,
Let's talk about your first day of school. I was overjoyed that you entered pre kindergarten. However, aside from the usual worries of whether you were ready for school or not, I wondered how much help you would need. I sat you in the yellow chair shaped like a bee that we brought from home, then I said good bye and you seemed happy. I left your school wondering, worrying, and afraid.
I had no idea what you would need for school, aside from school supplies. Pre-school was not only new to you, but also to me, although I had already been through it with your older brother. I kept thinking about you would get around in your classroom. I kept thinking about how you would defend yourself if another child tried to bite or attack you in any way, as it is usual with toddlers your age. What if you needed something you couldn't get to, how would you get around?
The morning went by and it was time to pick you up... I got to the classroom window to pick through and there you were. My beautiful princess, sitting in your bee chair while the other kids played and ran around. You seemed so content and that made me feel so happy. All the kids started to get their backpacks while you waited patiently trying to figure it all out. Then, I couldn't hold back my tears when kids came running to the door as their parents picked them up. You sat in your chair and waited, then you saw me and got so excited that I was there. You told me what a great day you had and how much you played with your friends. Your teachers said that you were such a happy girl! They made some changes and accommodations to make easier access for you, just like the other kids. Your cubby was made accessible so that you could place your backpack and lunchbox inside all by yourself. The next day, you were the first one to come out of the classroom with the help of your teachers, that was very special.
When I left you in school on the first day, I was wondering, worrying, and afraid. Today however, I am no longer worried or afraid because I see that you love school. It was a very hard decision to get you started by now I know it was the best choice I made. You love your teachers and friends. I am learning what you need as we go along so that I can be a better advocate for you.
Let's talk about your first day of school. I was overjoyed that you entered pre kindergarten. However, aside from the usual worries of whether you were ready for school or not, I wondered how much help you would need. I sat you in the yellow chair shaped like a bee that we brought from home, then I said good bye and you seemed happy. I left your school wondering, worrying, and afraid.
I had no idea what you would need for school, aside from school supplies. Pre-school was not only new to you, but also to me, although I had already been through it with your older brother. I kept thinking about you would get around in your classroom. I kept thinking about how you would defend yourself if another child tried to bite or attack you in any way, as it is usual with toddlers your age. What if you needed something you couldn't get to, how would you get around?
The morning went by and it was time to pick you up... I got to the classroom window to pick through and there you were. My beautiful princess, sitting in your bee chair while the other kids played and ran around. You seemed so content and that made me feel so happy. All the kids started to get their backpacks while you waited patiently trying to figure it all out. Then, I couldn't hold back my tears when kids came running to the door as their parents picked them up. You sat in your chair and waited, then you saw me and got so excited that I was there. You told me what a great day you had and how much you played with your friends. Your teachers said that you were such a happy girl! They made some changes and accommodations to make easier access for you, just like the other kids. Your cubby was made accessible so that you could place your backpack and lunchbox inside all by yourself. The next day, you were the first one to come out of the classroom with the help of your teachers, that was very special.
When I left you in school on the first day, I was wondering, worrying, and afraid. Today however, I am no longer worried or afraid because I see that you love school. It was a very hard decision to get you started by now I know it was the best choice I made. You love your teachers and friends. I am learning what you need as we go along so that I can be a better advocate for you.
Thursday, January 1, 2015
I can dance, I can dance like a Ballerina!
Dear daughter,
You are three years old. You are full of energy, excitement, ideas, and love for all people involved in your life. We are blessed with you, truly blessed. You have many gifts that probably seem ordinary to anyone but are actually pretty extraordinary for a little girl like you who had to fight for her life for a very long time. You can talk, you can sing, you are a funny and smart little girl. You can grab toys with your hands and play with them, you can make circles and lines, you socialize with your friends and family. You don't seem to know that any limitations exist for you. When you were a year old, we were told that you have cerebral palsy and you would "never be normal" and they were right. You are not normal, because you are better than normal, you are AMAZING! You are not what we expected, you are so much more! You are gorgeous, smart, and determined. This is your year! Every day you say you want to walk, you say you want to hola hoop and hop like a bunny and dance like a ballerina. Your journey starts here, you will do amazing things. It will not be easy, but I promise that it will be worth it.
Our journey to SDR begins today and we will work hard so you can do all those things that you are so excited about.
You are three years old. You are full of energy, excitement, ideas, and love for all people involved in your life. We are blessed with you, truly blessed. You have many gifts that probably seem ordinary to anyone but are actually pretty extraordinary for a little girl like you who had to fight for her life for a very long time. You can talk, you can sing, you are a funny and smart little girl. You can grab toys with your hands and play with them, you can make circles and lines, you socialize with your friends and family. You don't seem to know that any limitations exist for you. When you were a year old, we were told that you have cerebral palsy and you would "never be normal" and they were right. You are not normal, because you are better than normal, you are AMAZING! You are not what we expected, you are so much more! You are gorgeous, smart, and determined. This is your year! Every day you say you want to walk, you say you want to hola hoop and hop like a bunny and dance like a ballerina. Your journey starts here, you will do amazing things. It will not be easy, but I promise that it will be worth it.
Our journey to SDR begins today and we will work hard so you can do all those things that you are so excited about.
Subscribe to:
Posts (Atom)