Today mommy and daddy took me to go see the Easter Bunny. He scared me, but he also scared lots of other kids too so I don't feel so bad.  Mommy had to sit with us for the picture. It was fun to have daddy go with us to the mall that is not his kind of place so...... Thanks daddy.

We also met with Barb today from UCP ( United Cerebral Palsy ). She had some good ideas for mommy and daddy.

I now have to work with all of my therapists by myself. Mommy is making me. I do not like it but I will get over it.

On Sunday I had dinner with Uncle Donny, daddy and mommy. It was Donny's birthday and I got to spend it with him. HEE HEE Daddy got to spend all day with him, I suppose that daddy and Donny would have more to talk about than me.

So we have just been hanging out doing fun stuff. 

So Happy Easter everyone. Check put the slide show for new pictures after this weekend.

Well the trip went very well. Christina was quiet all the way to the doctor. Not so much on the way home but she was hungry and tired and that would make anyone cranky.

So the neurology news................. We do not need to see him for a year!!!!! He said that there is nothing neurological going on everything that is going on at home is typical two and three year old stuff. HEE! HEEE! Got to love the ages two and three. He also stated again that he is really impressed with the progress in Christina's development. He said that he did not think that she would have made it this far. She is amazing. Also he said that she is a very smart girl but we all ready knew all lot those things.

Christina is doing well with Deb but only when mommy is gone. Christina seems to scream when mommy is around because that is who she wants. She is going through a mommy stage. It is getting better.

She is working more on crawling and doing very well with it.

We had the transition meeting with Tammy and the school teacher we think that she will do just fine.This is the next stage of development for her. So I think that we are feeling better about the whole thing. School will start in September. We are all going to tour the classroom on the 30th of April to get a better idea of the classroom environment.

Things are moving along very well.

Cole, mommy, Crystal, Evan and I went swimming last Friday. I had lots of fun. Mommy and I were chasing Evan. Cole was not so happy and I tried to comfort him but it did not work.  I swam for an hour. It was great.

This Friday Cole was over all day and we played with blocks. Mommy spied on us while we were playing. I also went over to Debs and I hung out with her for about an hour with out mommy. She did say later that she was peaking in on us, she saw that I gave her kisses and hugs.

On the 2nd of April I have a doctor appointment with Burnstien, my neurologist. We will keep everyone up to date if there is anything new.

New stuff that I am working on is talking and singing. I really like hard music like Pearl Jam and Slipknot. My walking has taken a backseat for now because of everything else I am working on sitting and grabbing stuff with two hands. I really like hangers. I can stick my head through the center and transfer from hand to hand.

Mommy and daddy have also busted me on my behavioral issues such as manipulation and being extremely impatient. So I am not getting away with as much.

Well we got my swing and it is soooo fun. I wish we would have gotten it sooner. Mom talked with Katie on different ways to use my swing and we were all playing with it last night. I took my first official fall. I fell out of the swing and got rope burn on my upper lip and nose. It was more traumatic emotionally for me than any physically.  Mommy gave me a freeze pop and that made thing better.

Today I got right back on my swing. It is still soo much fun.

Mom, Deb, Trevor and I went for a real long walk and then had ice cream. I like to be outside. Mom and I have been enjoying the warmer weather. I now like my stroller so we can go for long walks.

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.

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 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.

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.

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.

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.


Bonnie


Dr. Perdue

Becky