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

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!!!

Sorry it has been so long for an update......

Christmas was fun. I got a lot of real cool toys and have had a great time playing with them. I got this tool bench that little animals pop out when you hit a shape. I crawled to it the other day. Then when I was going to show daddy I went right to him because it was bath time. I am getting stronger in the arms and legs, so I don't need the a lot of help on the floor.

It was nice to have daddy home more than usual. It is sooo much fun to play with him.

On Christmas Eve Crystal and the boys came over and we all made sugar cookies. While we were doing that daddy set up skype on the computer from work and scared Crystal. It was funny.

The day after Christmas mommy, Crystal, Cole and I  went shopping at the mall and had lunch at Arby's. I always have so much fun shopping. HEEE HEEE

Mommy and daddy are getting prepared for the trip to the cities. I think that they are nervous and anxious. We all want to see what the results will be. I know that I really want to walk around and get into things. Soon I will.

Pictures will be coming soon.

HAPPY NEW YEAR everyone.


This year has gone by so fast. All in all it has been a wonderful year.  Of course Derek and I got news that we did not want to get but that is always going to happen. No matter what the news is Christina is doing so great and we all have each other. Christina is growing so fast and learning new things all the time. She is such a blessing in our lives and she is truly an amazing little girl.

Christina, my little fire cracker, was wriggling her way towards a toy with Angela. When I came into the room, I sat on the couch to watch. Christina lifted her head up to look at me and smiled. She started to turn towards me and gave up on the toy. It was wonderful to see her wiggle and inch along.

It is a special feeling when she tries so hard to make it to me. Christina is one very special girl.

Lots of hugs and kisses to you Christina!!!l

The scenario...
Angela and Christina went to the mall while I backed up my data.
All is saved, the new hdd is in and formatting.

Next to install all the software.

I received a new iPod for Christmas. It is fun learning how to navigate and find the features.

To try my skill, I am posting with it. Typing on a screen is not easy. Maybe someday I will get used to it.

Christina is still sick. Or maybe I should say sick again. She can't seem to shake whatever is going around. Her preop is on the fifth. I hope she is ok for surgery on the seventh.

Enough said.

I am sick again. I went to the doctor today to make sure I will be okay when I go to Children's.  I had another ear infection and a very sore throat. So the doc gave me a shot of an antibiotic in my leg and that is suppose to take care of everything. It was real painful but mommy was there and made me feel better.

Yesterday I walked in my braces all by myself while listening to Peggy Sue. I really like music. We have been doing a lot of indoor activities because it is really cold outside.

The time has come for the first round of Botox to be wearing off. We go back again early January. They are also going to do Phenol blocks.

The Phenol requires Christina to be under, so we will not be able to hold her hand during the procedure.

We are also looking into the Botox for her arms.

It is all a lot to think about.

So the trip to the cities yesterday was not fun at all. There was a big accident on the freeway in Wisconsin and we had to sit there for a long time. We did make it to Minnetonka on time with enough to spare for lunch before my appointment.  So Tanaguchi said that it is a go for phenol blocks to help my hips develop correctly. The results are immediate and he said that I will probably have to re learn everything that I know; such as walking in the gait trainer and balance, because the tone in my legs will be different.  We are also looking at using botox for my arms but mommy and daddy said that we are only doing one thing at a time. I am also getting botox in my calves at the same time as the phenol.

So when I get the phenol I will be in the OR and mommy and daddy can not go in with me. I know that they are sad about that. I am a trooper I know that I will be just fine.

News today my tooth (molar) finally broke through and there was a lot of blood but it felt better after wards. I still do not want to eat much unless it is cold but that will pass soon. Yippy

Pictures will follow. Daddy got a picture of the whole crew at Gillette Childrens.