Cheyanne is 8 - Time for sports

Hello Everyone-

Its been a while since our last post- Our whole family moved from Bellevue Nebraksa to Lancaster CA! It was a huge transition, expecially for Cheyanne, but she did good!

Now that we have settled down a bit and now everyone is in school- our next goal is to get Chey into some kind of sports program.

Cheyanne has been doing so well, but her little sister has already passed her up in some aspects , so we want to put Cheyanne in a program where she is the best!

As I look around the web, I came across some awesome sites for sports for special needs and I will post them.

Its Summer time!

Cheyanne is now 7 years old! How time flies! And now after everything she has been through all she needs to take is trileptol for her seizures that are now under control.

She is now in to more crafts and singing and such and she wants to keep busy so we are actually looking into sending her to camp this year.

Here are a list of free camps for special needs that I saw that maybe you can benefit from also:

http://www.veryspecialcamps.com/campers/

http://www.nmfa.org/site/PageServer?pagename=camp_locations

http://www.familyvillage.wisc.edu/Leisure/camps.html

http://www.campluther.org/Index.asp?PageID=7656

She Growing So Independent!

I can remember the last time that Cheyanne wanted help with something. She is now 7 years old and she is in the 2nd grade. She has grown up before my very eyes and her new haircut has opened our eyes to a brand new girl.

cheyanne needed a hair cut because she was not capable of combing her hair by herself and she did not liked to be helped. So we took her to get her hair cut and now she can comb her hair with ease everymorning.

She still has that anxiety that causes her to bite her right hand and produce terrible callouses, but at school they are giving her a chewy bracelet and necklace so she can chew on that.

She still has absent seizures when she is extremely tired, but her medication and kept the awful ones at bay.

She can ride a bike now which is amazing to us. She is growing up so much.

Fevers and headaches

Cheyanne and Tiana have been passing back and forth the same cold for a week. When does this stop? This last weekend Tiana was so sick and didn't want to talk to anybody, but all Cheyanne wanted to do was hold her hand and be with her. It is very hard to keep those two apart. For the last couple of days Cheyanne has had a fever of 102 at night, but during the day the fever goes down and she just seems really congested. We went to the doctor, and he gave us some antibiotics but they didnt really work so we are off to the doctor again tomorrow. Today Cheyanne and Tiana are sick together. Both of them in the same room. They slept all day and surprisingly enough, it is night time and they are still sleeping.

Cheyanne's eating problem took a break since they have been sick. This really puts everything on hold because I can understand when you feel that way you don't really want to eat. I'm hoping though that it was a temporary thing.

When cheyanne was little and she got sick, we were very nervous. She had a tracheostomy at the time and my husband and I were experts at changing that trach out and cleaning it and such. Now thinking about it, I can't imagine carrying around the suction machine any more and carrying all of the supplies that we had to order monthly. It all seems so far away. I am grateful for everything God has put into our hands, even though they were extremely hard, He has made us better parents in return..

We have progressed!

After talking to the Therapist today, it looks like, after talking about the journal activities and such, that she will not eat on an off day. Which means, if she is having a bad day....she will not eat. This may be a problem for us because she can have 5 straight bad days in a row before she has a good day. So far, she has been helping me cook dinners and when she seems to have some part in it- she wants to eat and of course she wants everyone else to eat.
With that in mind, now the mission is to keep her a happy little girl.

Cheyanne Goes to see a Behavior Therapist

I picked up from Cheyanne from school today to take her to her behavior therapist appt. Mainly, we were concerned about her eating habits, and I wasn't sure if it was normal or not. I also picked up my son, Nathan, Cheyanne's older brother, so she wouldnt cry with the doctor, because she would feel more comfortable with him.

We met the doctor and I believe cheyanne felt like this was Nathan's appt, so she was very calm about the whole thing. The doctor made her feel very welcome and at ease with the situation so when the doc started asking her questions about food she did not feel pressured to answer them.
After all the question asking, the therapist asked us to keep a journal for the week. To write down how she wakes up in the morning, see if she eats her breakfast and how much she eats for dinner.
We are to journal that for a week to see if there are any relations to her mood and if she wants to eat or not. So far, so good- Hopefully this doc can give us some ideas, because sometimes, Cheyanne scars me when she doesn't want to eat.

Problems eating????

Cheyanne has recently been putting up a fight with us when it comes around to eating. We started noticing it during breakfast, before school. She use to have a bowl of cereal right before school and now she does not even bother eating. At first, I thought it was because she was just not hungry, but then she started doing it at dinner time. She would put up a fight with me because she does not want to sit at the dinner table. It was starting to really bother us. Is this to be expected? Was this going to happen soon? I havent read alot about this occurence, so just like any other mom- I turned to the internet to do a little research on my own.

Did you know that 35% of Children with Cerebral Palsy are Malnourished?

But before this, I needed to try a couple of things. With everything the Cheyanne does, there needs to be a plan. Sometimes , I need to reach her a different way.

After two weeks of trying everything from cereal bars to just plain giving you something different to eat- my last straw was to have her make dinner with me.

I knew that I needed to be really careful with what I have her do in the kitchen, but I realized that this could be the perfect one on one time with my daughter. With 5 kids in the family, it is very hard to have some individualized time with one of them alone, let alone with my own husband.

So we started with something simple, hot dogs.

First, I asked her if she wanted to help, giving her that choice. Then I rolled up my sleeves and washed both our hands and away we went!

I made her do everything that she could step by step, of course helping her. She also served everyones plate and placed everything on the table, and called everyone to eat. I made it feel like it was all her own doing- hoping that this would work.

We sat at the dinner table and she exclaimed to everyone that she made dinner and that she was a big girl.

Then she ate her whole plate. We were all very happy- because we were very concerned about this.

So we did the same thing for breakfast. She poured her own bowl and she ate!

This was a big break for us- she wanted to eat her own food because she was proud of it and that because she did make it, she felt that it shouldnt go to waste.

Big Breakthrough day for us!

Places that I looked up were:

http://originsofcerebralpalsy.com/04-care/03-feeding-nutrition.html

not eating

Even though we got this far, we still made an appt with the Doctor on Thursday to make sure she is not sick and that she is doing fine on weight. Until then.....