March... 
Saturday, March 07, 2009, 20:53 -
Posted by Administrator
It has been so long since an update. All has been pretty mellow around here. We have been enjoying the warmer weather. Mom and Deb did the polar plunge and I had lots of fun with daddy and uncle Donny while we watched.

This week mom and I went for ice cream two times and I really liked that. We also meet Aunt Maria for lunch on Thursday. I got to talk to aunt Astara on skype at the office.

I have been working hard on walking and crawling- I have made huge progress.

On Friday Cole came over and we tore up the house,  HEEE HEEE.

Upcoming things are on the 26th I meet Mary for the transition into the school district. On April 2 I have two doctor appointments one with Bernstein and the other with Tanaguchi.

Pictures will be coming soon.

Birthday 
Sunday, March 01, 2009, 13:35 - General
Posted by Administrator
Happy Birthday to me.

For me, it is just another day. I didn't even remember how old I am until Angela got up and reminded me.

Celebrating is not my cup of tea. I think it is a good excuse not to make dinner tonight and to order out. I thought about the three of us going out for dinner. What I really enjoy, is being home and watching Angela and Christina interact. Or working on the PC and listening to them.

Dinner at home it is. Now to figure out what I am in the mood for.

Derek


HI 
Thursday, February 19, 2009, 05:28 -
Posted by Administrator
We all just wanted to say hi to everyone. Not much new here just hanging out and waiting for the weather to get better so we can go play outside.

Have a great night to all.
Christina

Walking 
Saturday, February 14, 2009, 02:41 -
Posted by Administrator
Walking has been going very well. Christina has all the ambition in the world to accomplish this task. She has started to walk in the gait trainer with braces and benik vest.  The benik vest is made out of wet suit material with two metal strips in the back for support. It works under the idea of pressure on the trunk of the body to make the body more aware of it's actions. this vest has been a real help for Christina.

Christina has also been very good in the car around town. No crying. Yippy. She is also getting her last set of molars on top. They ruptured on Thursday. The teeth are getting better now.



New and wonderful 
Monday, February 02, 2009, 04:30 -
Posted by Administrator
Things have been very mellow over here. We are working very hard on strength in Christina's legs. Since the phenol it is very apparent how weak that the muscles are. ( CP will do that.)  We have started swimming again and Christina is glad to be back at the pool. We went on Thursday and she doggy paddled to a beach ball and then grabbed it. When she would grab the ball it would squeak and she though that was the funniest  thing ever.  It was so amazing to see her see the ball and reach up for it - it was a big beach ball.

Today we all went to Walmart for kitty stuff and Christina walked the width of the store. She was very tired but refused to stop. We did the walk with a few breaks. She is also sick again with a cold. It has been a bad season of colds.

Christina has also had great luck with sitting up and being able to control her upper half. The phenol has helped with the myoclonic jerks that use to make her loose her balance.  She is also working real hard in her gait trainer and walking with her braces.

She is such a trooper and refuses to give up.

We are waiting to find out if we can get her a touch screen computer. She does wonderful with the touch i pod and we can only imagine what she will be able to do with a whole screen. We will find out if funding will get her one soon. All of her therapist are pushing for her.



If anyone would liek to see more pictures check out the slide show.


First Post by Daddy 
Tuesday, January 27, 2009, 19:51
Posted by Administrator
The new blog is setup.

Now for the little details.
Orion 
Friday, January 23, 2009, 18:05 - General
Posted by Administrator
Poor Orion.

I dropped Orion off at the vet this morning. He was scheduled to be neutered and to have his front claws removed.

Christina and I will pick him up tomorrow morning.

I feel bad, but it is for the best. I would hate to have Christina get scratched. She pets Orion nice most of the time. Sometimes though, she grabs and pulls his fur. Orion is very tolerant.

The girls are sleeping as I just came home. I hear Christina stirring. She must know I am home.
Update on phenol 
Thursday, January 22, 2009, 02:11 -
Posted by Administrator
Well in the beginning it was very concerning for me and I am sure for Christina and Derek as well because the skills that were there were no longer there. In the last week we have been working very hard towards gaining the skills back. Christina is doing great. The lack of strength in her legs is noticeable but it will always be weaker due to CP. She is working very hard and is very persistent on walking so that is what we do lots of. Dad makes great games out of leg strengthening as well. So things are going great. She is doing great at sitting up as well.

This weekend Christina got to meet Joan and she liked her very much. It was shocking how much Joan was able to touch her and Christina held her hand and gave high five.  Yesterday we went over to Deb and Cory's to play with Trevor. We had lots of fun. The two of them always have fun together.  Then Derek came to get us to go grocery shopping. Christina likes to go to the store just not the ride there or home.

Christina has also been approved for more funding and we are exited about what we can get her. We are going to try for a touch screen monitor. She has figures out how to use the touch screen ipods and likes them a lot. Imagine what she could do with a whole screen.

Anyway we have just been waiting for the temperatures to warm up so we can go out side and play.

Same 'Ol Same Ol' 
Wednesday, January 21, 2009, 06:57 - General
Posted by Administrator
Not much new. Angela's birthday is coming up.

Christina is doing well. She tries so hard to do things. I wish I could make it all better.
Hospital Trip 
Saturday, January 10, 2009, 13:27 - General, Doctor, Events
Posted by Administrator
Well, we made it home in one piece.

Christina's appointment went well. She had Botox in her calves and Phenol blocks in her thighs. Dr. Engel also checked Christina's eyes while she was under.

The nitty gritty update :
Christina's optic nerves did not develop entirely. They will not get worse or better. This, along with the brain processing, is what hinders her vision. We still will not know how much she sees until she can tell us.
The Phenol took effect right away. Christina's legs are no longer in a scissored position. They are a little spread out and she needs to learn to use those muscles all over.
The Botox will peak in about three weeks. I am confident it will help her as much this time as it did last time.

We were able to see Bonnie and Becky while we were at Childrens. We also ran into Dr. Perdue, Christina's first doc at Childrens.

The car ride there on Tuesday night did not go well. Christina had a different cry this time. It was more like she was scared. I felt so bad for her. Angela and I took turns holding her hand and that helped.

Christina and I had a chance to use the pool at the hotel on Wednesday after we were back to the hotel from the hospital. We also called Amber and Mark and had the chance to visit with them.

We stayed Wednesday night and came back on Thursday. With the time of the appointment and the Phenol being something new for Christina we felt it was better to stay another night.

The car ride home was typical. It was so good to be home.

On a very happy note, Christina is getting better with my putting her down for a nap. Today again, I was able to lay down with her in her bed and put her down for a nap. she is asleep all by her big girl self.





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