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.

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.
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.

Phenol and more... 
Saturday, January 10, 2009, 20:55 -
Posted by Administrator
So it has been a very rough week on me, Derek and Christina. Lets start by saying the phenol and eye stuff went very well in the OR and took less time than thought. 

It is positive that there is nerve damage in the eyes and that has nothing to do with the PVL. The nerves were not fully developed and there is no way to know how she sees. This is nothing new to us but very hard to hear. So her vision issues are not fixable in any way and there is more than just one problem. The issues are as follows: The brain does not process what the eyes are seeing, the nerves in the eye (both of them) are damaged due to under development, and then the nerves are smaller that they are suppose to be.  That about sums up the vision issues.

So now to the phenol and botox. Both of those procedures went well. It will take about 4 weeks  for the botox to get it's maximum benefit. The phenol on the other hand was instant. I have mixed feeling about that and I think as does Christina and Derek. The muscles were loosened in the inner thigh and that is a positive. However on the other hand it seems that it has increased her tone elsewhere and that she is unable to control her body as well as she was. It was brought up to our attention that she would have to relearn stuff because her body is different now.  It is not a bad thing she is now able to use muscles that she was unable to control before.

They let Derek and I go into the OR to put her to sleep. I held her down and that was horrible to hold her down while they masked her. She woke up and was a Daddy's girl for two days. I guess that I can't blame her I'd be mad at me too.

It is hard on all of us. It seems that things that has taken us 2 years to accomplish are now unaccomplished, but I am positive that she will bounce back quickly and learn new skills in the process. It is just hard and frustrating on all of us.

On a different note...

Bonie - Christina's first primary NICU nurse was in the OR and that was her nurse for this round and it was wonderful to see her again.
By the way  HAPPY BIRTHDAY BONIE !!!!!!   It made Derek and I feel much better knowing that she woke up in good hands. 

We also got to see Becky while we were there and Dr. Perdue ( Christina's very first doc in the NICU )

The car rides were not the greatest either but not as bad as usual. 

We did have fun at the hotel aside from the hospital stay. Christina and daddy went swimming, I did too. We also took a sheet and did sheet rides up and down the hallways in the Sheraton.

Also when we got home Derek got Christina down for a nap in her bed. That is the first time ever. Good job Daddy.

So now we are just trying to get back to a normal routine and lots of therapy to get back to where we were and then some. Christina is truly an amazing child. She does wonderful with all of the procedures that she has to go though and comes out in with smiles.


Dr. Perdue


Prep for the week 
Saturday, January 03, 2009, 15:49 - General, Doctor, Events
Posted by Administrator
The weekend brings us to getting ready for another trip for Christina's appointments. Christina has her next round of Botox. We are also starting Phenol blocks.

I am a little concerned as always when we try something new. It is the next step to help Christina overcome the tone in her legs.

We talked with Dr. Tanaguchi about her arms and he is willing to start Botox there too. I am afraid that will be too much new for Christina. Angela agreed. We also asked her therapists, I wanted to be sure it was the right decision. We will plan on Christina getting Botox in her legs and arms on the next round.

Cheers, little firecracker!!!

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