Good news from the neurologist!!!

Dr. Burnstein said he is impressed with how far Christina has come. And, we don't have to go back for a year. I never thought those words would mean so much.

Christina has been giving Angela and myself some grief, it seems she wants the other parent no matter which one of us is holding her. Her upper molars have poked through, yet still creep along making her uncomfortable. It is nice to have behavioral issues for a change. Although, they can stop now.

Not much else is new. I still have a few weeks of school. It is going well. I am trying to get the most out of it. Angela is ready for a break, I hope she can relax in California.

Christina has been vocalizing more, she tries so hard. The phenol blocks and the Botox are wearing off too. She is still willing to walk, it is harder for her. You can see how hard it is. There have been times her little legs shake as she tries to take a step.

Sad now, gotta go.

What's new? Not a whole lot.

Christina is doing pretty well. She has been working on her vervbal communication and enjoys hearing herself. Speech therapy has given us some things to work on. One of the words we are working on is "more". I am also working on the word "daddy".

Christina's two top second molars are still being slow in coming through. There have been some troublesome days and nights lately. They have gotten better. Although, the princess does not like to lay down by herself for a nap. And, on the weekend has been fighting naps more.

As Christina deals with her teeth and speech, her legs have taken the back burner. She has had more difficulty taking steps. We still work on it, on some days Christina wants to try to walk everywhere. One time taking steps is not a problem is bath time.

Angela and I are doing OK. Angela sprained her foot; not very bad, but enough to hurt a lot and make things more difficult. Both uf us are ready for a break.

I'm going to take a class online. It starts this month. It will take some time juggling, but I am looking forward to it.

Cheers,
Derek

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.

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!!!

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.

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.

Christina is sick today. She hasn't been feeling well for a few days.

One of the bottom molars poked through with an attitude. Christina had a flap of gum flopping over her tooth. The other molar on the bottom is so close. It has been swollen for awhile. The two on top are still taking there time.

I think the teething has put her in the path to getting a cold. She has a cough. It sounds very rough. It has progressively been getting worse. She has been clingy and whiny. I would imagine she has a headache too.

While Angela was out of the house getting her school work done, Christina and I wrapped a couple presents. She enjoyed playing with the paper.

The dentist visit went well overall. Christina was not happy while they cleaned her teeth or when anyone was poking around for that matter. She was back to her happy and smiling self when everything was done.

The dentist asked if Christina had been cranky lately. Angela and I looked at each other, we both replied yes. The dentist said she is teething and her two year molars are very close to coming out. We asked also how long it takes for teeth to come in. Christina seems to drag each tooth popping as a long process. They assured us that these molars could take months. Argh.

After the dentist, Angela and Christina did some more shopping and brought me coffee at the office. Mmm, can't go wrong with good coffee.

We have a sleep consultation coming up in December for Christina. The real treat will be trying to get her up there for a sleep study. Heh heh.

Today Christina has her first teeth cleaning. It will be her second dentist appointment. The first one went well. They did not do much. Just a check up. Today though, today I am a little skeptical at how Christina will react.

I'm feeling a bit sick. I need a goodnight sleep and the chance to sleep in.

James and Robyn came over yesterday. We all had a nice visit. Christina is getting better socializing.

I made breakfast for everyone. It was Sunday, pancakes for breakfast. Christina ate a lot for breakfast.

James and I swung Christina on the sheet. She really enjoyed it and showed James the more sign.

Robyn read to Christina. They enjoyed a couple of Dr.Suess books. Christina did very well.

Christina also showed how well she can run in the gait trainer. She did very well. We did not have her braces on for that.

The eye doctor appointment didn't go well.

To start, Christina cried all the way there. Not a surprise. The assistant that looked at Christina first was not aware of Christina's sensory issues. She scared Christina often. Not on purpose, but we tried to tell her tips to help prepare Christina and she didn't seem to listen.

By the time the doctor looked at Christina she was not cooperative at all. He has to pry and hold her eyes open. That made her all the more upset.

And of course, Christina cried all the way home.

The news from the doc was the same for the most part. What we did learn is that the nerve endings in both eyes are smaller than normal and pale in color. And, her brain probably does not process the information as it should. More than likely due to the PVL.

Last night, Christina woke up about 03:30 and her and I had a snack. She did not want me to sit in the chair, she prefers I walk around. I stood my ground and we sat in the chair. We both ended up falling asleep and managed a couple more hours of sleep.

Evan and Cole are coming over to play while Angela and Crystal go shopping. Time to go.