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.....

Cheyanne Stays Home Sick

Cheyanne had to stay home from school today because she had a cold. Ever since she had her tracheostomy, even after she had it removed, she has had the hardest time handling even the smallest colds. I think its because she wasnt use to using her voice and she didnt have to project as much. As of now, we can barely hear her when she speaks, even though we know that she can project her voice, I don't think that she has figured it out yet. Even when she tries to blow her nose, its pretty much useless, because she doesn't get the concept of blowing out . But of course we will never give up on those little things. Eventually , she will get it. When giving her cough medicine, David gives her those strips that just melt on your tongue. Works much better for her- less mess:)

Cheyanne Throws a temper tantrum

Cheyanne has her good days and her bad days. Today was a bad day. Its starts off with" NO-NO- everything is ugly!- Don't talk to me" to " I don't want to eat, its ugly" to Just plain "NO" for everything.
She can be the most sweetest, shyest little girl, but when she has an off day- its a bad day for all of us.
We still havent gotten a real handle on it yet- we just kind of try and make her laugh and get her out of this emotional state that she is in, but sometimes it just makes it worse. I have read a couple of articles about this and one that keeps coming up is :HOW TO BE A GOOD PARENT OF A CHILD WITH CEREBRAL PALSY OR PARENTS' RIGHTS.

It just explains how we need to handle some days but I am constantly looking for more books on it.

One thing that we do with Cheyanne is that she loves the computer. Its because she is really good at it. She loves logging on herself. She also loves to watch Barney videos and rewind them about fifty times, but she loves that because she can do it herself. She also likes to choose things on her own to show that she is a big girl. One thing we started to do with her is have homework packets and she loves it that we are proud of her when she can spell certain words. Of course, this is all done in conjuction with what her teachers are teaching her.

What to do with two little girls on a snow day!

Its another snowy day in Nebraska and these girls have been cooped all day. So we thought that we would improvise and do some online karaoke. Its one of the simplest things do to. Just pull up one of the couple of online sites and you don't have to hook up anything to the computer. All you have to do is sing! Anyways on a day like this, when I know that I don't want to send them outside until the snow day tomorrow- we try and occupy the girls with things like online Nick Jr.com or Barney.com or we play some go fish. I also make a mexican drink that my mom used to make on cold days- Its called Atole. It taste so good and it replaces hot chocolate for us. Tomorrow - I'm thinking about trying the Snow Day Party. I will definately let you know how that turns out.

Tiana gets pulled out of school today

Today was Tiana's last day of Headstart. It kind of came up on us pretty sudden but she is ok with it. She will now be going with Daddy to his college and be hanging out at Peru States Daycare. I am hoping that the hour drive to the college with Daddy will bring them closer. David has always had a special connection with Cheyanne. Maybe because she never gave up her when she was in the hospital, or maybe it was the fact that Cheyanne's experience brought him closer to God. Praying at a hospital is not an unheard of thing, but when you are doing it every second of every day in a month, it tends to bring you closer to HIM. Well , Tiana has always been easier to deal with so I think that he feels that he doesnt have to work that hard for her. Tiana has always been a Momma's girl and she shows it. Like I said- I hope this is a good thing for them to spend time with each other.

Today cheyanne learned a new word- Little. But she doenst like it, so she refuses to work with it. I am constantly looking on the net, trying to find some tools I can work with so learning can be fun for her but , its going to be a long, hard road.

My girls

Cheyanne has cerebral palsy. There is still alot of things that I don't understand about it. Like I don't understand why she has to have seizures or why she wants to keep to herself alot. She is in the first grade and I am amazed that she read her first words just last week! That was a big accomplishment for a little girl that is working on half brain capacity. She does amaze me everyday. Because of her tracheostomy, she has such a raspy voice. She wants to sing more than anything, but she is so behind in her speech, you can barely understand what she is trying to say. But Tiana can understand her. Tiana can make her see things that no one else can teach her. They are best friends and just by looking at them together, you know that they would do anything for each other. Tiana is going to pre-school right now but next year is the year of Cheyanne because they will be finally going to school together. No long will Cheyanne have to take the bus to school because now she can be accompanied by Tiana. I am a little emotional when it comes to them because they have a unique relationship. Cheyanne actually thinks that Tiana is her big sister, when it is her that is two years older.Time to put on Barney now:)