Wednesday, February 22, 2012

S and the Behavior Contract

S can be hard to motivate. She is very smart and very capable of doing her schoolwork, yet at times it is near impossible to get her to do it. I am usually able to talk her into it, but it takes at least an hour longer than it should. She is supposed to read to me each night, but it takes much longer than it should. She especially hates spelling. I am not sure why the hatred is there, but it is.

It is easier to give a cat a bath than it is Savannah. This is especially true when it comes to washing her hair. She also puts up a fight when it comes to brushing her teeth and taking her medicines.

She also seems to have gotten it into her head that if she gets other people in trouble or points out their shortcomings, then she looks better in the eyes of adults. I am not sure where this comes from.

I have tried everything. I tried punishments. I tried rewards. I tried a combination of the two. I tried a reward system. Nothing seemed to work.

Now, I am trying something new. I am doing a behavior contract with her each week. I will put desirable behaviors in the contract. If she performs them all week, on Saturday I will take her to the Marble Slab for ice cream. So far this week it is working. She is writing her spelling words a couple of times each as I write this.

Here is a copy of the behavior contract. I know some will be upset that in it I forbid her from coming into our room at night bar an emergency. However, I have a reason for this. She is very restless and ends up kicking us all night long, preventing us from sleeping. J has to work and I have to get her to school and the other kids to lots of appointments as well. We need sleep. We cannot sleep if someone is kicking us all night long. (She also talks loudly in her sleep.)

Behavior Contract – Week of Feb 19, 2012

This is a contract between S and her parents, J and D. By signing the contract, S agrees that she will do the things mentioned in the contract in exchange for the reward mentioned in the contract.

1. S will read aloud for 15 minutes every night.
2. S will write her spelling words 2 times each every night and then take an oral spelling test. Any words she misses will be written two more times each and she will have to write a sentence for each word missed, using the word correctly.
3.S will take a bath each night without argument. She will wash her hair every other night without a fight. She will brush her teeth while in the bath.
4.S will neatly complete her math homework each night.
5.S will take her medications each morning and night without fuss.
6.S will stay in her own bed at night, getting up only in an emergency or to use the bathroom (and she will use one of the hall bathrooms, not the one in mommy and daddy’s room).
7.S will not instigate fights with her siblings.
8.S will not tattle unless someone is in immediate danger.

If S abides by this contract, on Saturday she will be taken to the Marble Slab and allowed to purchase a small ice cream with one mix-in.

Sign: _________________________________________________________

Just hoping this continues to work! She thought it was cool signing a contract!

New Updates..

C Updates

Well the new ophthalmologist says he thinks C can see just fine. He thinks she has attention problems and just gets so focused on what is in front of her that she does not pay attention to her surroundings. He did notice some pallor on one of her optic nerves though, so she will continue having MRIs every 3 months. Poor kid, she has had more MRIs than years she has been alive.

C also just started a special ed type preschool. It is a language program. The goal is to get her to talk. She also will receive help with Occupational Therapy, Physical Therapy and Visual Therapy. She seems to like it, she does not cry when I leave her. I love the big hugs and kisses I get when I pick her up!

She is doing better on a lot of fronts. She can JUMP now!

She has a neuro/psych eval coming up as well as visits with neurologists and orthopedics.

S Updates

S went to see the GI doctor because she has trouble swallowing. We also found out that day that she was impacted (severe constipation). She had not complained, and had even told me she had been going to the bathroom, so we did not know. I had my suspicions and she even seemed distended to me..but I am just a nurse, not a doctor so I asked about it while we were there. We had to do a cleanse and now she is on medication for it because they think it will be a chronic problem, especially since she is not feeling it. They think the brain stem tumor is at the root of the problem. It is causing problems with peristalsis of food through her GI tract.

She has some more tests coming up soon. They are going to do a video swallow exam to see how much her swallowing is affected. She also has a neurology and neuro surgeon visit coming up in late March. We will see what they say. Her next MRI is also in March.

Just please keep them in your prayers!

Tuesday, February 7, 2012

Getting in Better Shape..

As I mentioned in a previous blog post, I have been told I have high cholesterol. Now if you just look at the basic cholesterol labs, I would look like I was in pretty good shape. My total cholesterol is 187 (which is want it to be below 200). My LDL-C (bad cholesterol) is 124 which is slightly high since you want it to be below 100, but it is not so bad as to raise a lot of flags. My triglycerides we 64, which is well below the recommended 150 or less. My HDL-C (good cholesterol) is 49 (it is supposed to be above 40). My non-HDL-C is 138 (which is only slightly above the recommended 130 or less).

If you were to just look at the labs I mentioned above I would seem healthy enough. If you looked at me, I look healthy enough. However, my doctor chose to do a more in-depth blood profile on me and it revealed a lot more problems that I needed to be aware of in order to prevent future heart problems. Without going into a bunch of complicated and hard to understand lab results I will tell you in the easier terms that they gave me. The particles in my blood (fats, cholesterol, etc) are very small. You want them to be bigger. They said the walls around them are like a soccer net..a soccer ball will not get through but a tennis ball would. If they get through it makes you more likely to have blood clots and plaque build up on the arteries. My particles are like the tennis balls (given how high risk it put me, we might even want to call them golf balls or marbles). This means I have to do things that would increase their size. This will involve increasing the amount of exercise I get dramatically and a change in eating habits (less fried foods, less high fat foods like heavy cream, less red meat, more fish, more skinless chicken, more vegetables, more fiber, less carbs, cut out Dr Pepper, etc). I also found out I have Vitamin B-7, Omega 3 Fatty Acids, and vitamin D deficiencies. On the bright side, I do not have the genetic predisposition that would cause me to break down fats slowly, so I can take Omega 3 without much worry. I have also been given a prescription for Niacin (B7) and Vitamin D and will be adding Omega 3 pills to my regimen as well. We are really hoping these work, because I do have a genetic predisposition that could cause me to be more likely to bleed if I take Plavix or a drug like it, so those drugs are a last resort for me.

The nutritionist had a good point when I said it was hard for me to squeeze exercise into my day. She told me about a cartoon one of her patients had brought her. It showed a doctor and patient talking about not having time to exercise and the doc tells him to either plan for 1 hour of exercise a day or 24 hours of being dead. Click here to see the cartoon.

This means that I will start eating healthier. (I will miss some of the foods I love, but I am sure I will miss them a lot less than John and the kids would miss me if I keep up an unhealthy lifestyle.) I will start exercising. I plan to try and do the Couch to 5k program as well as a fitness program on my off days of training as well. I am still reading reviews on all the fitness games on the Kinect (my husband just got one for our family). I will probably get one of them as well. We have a Wii, but I think I will like the Kinect games better since I do not have to be attached to a controller or two. I bought a pedometer so I will keep track of how much I walk in a day. I am also going to keep an exercise log and food diary. I will try to keep up with it on here with weekly updates for anyone who is interested.

I also know that the physical health does not matter if you let the spiritual go. I looked around for a Bible study guide that would have a lot to do with what I am going through in my life. I could not really find anything. I have decided to just address specific concerns and pray and look for scripture that helps me with whatever the "big" concern of that day is about.

Sunday, February 5, 2012

Overdue Update

Well, here I am neglecting my blog again. It would be great to devote more time to this, and I hope to start doing that soon. I have also wondered if I should move the blog to a real address rather than just blogger. It would be nice to be able to separate things by category...then again the main thing I would want to keep separate is my book reviews (unless people actually like those being here). I could just have a separate blog for them.

Well, there has been a bit going on in the past couple of months. I will do the update by person.

J - The Husband

He was recently promoted to Major. This is one of the "big" promotions as it changes him from a Company Grade officer to a Field Grade. It is a little more pay, quite a bit more responsibility. It is good for his career that he made it as quickly as he did. He has to go to a school now though..which is a lot of work. However, he is brilliant and I am sure he will do well. (No, I did not get the word brilliant from Harry Potter...I have always talked like that.)

D - Me

Not much as changed with me. I am going to have to start eating healthier and exercising more. I found out I have very high cholesterol. I am proof that very skinny people can have this problem. For those who do not know me...I am 5'3" and weigh about 105 pounds. If I can have high cholesterol anyone be sure that your cholesterol is good. Please get your's checked..even if you are skinny and appear to be fit.

S - my 7 year old girl

S has had a lot going on. Her brain tumor is getting more symptomatic. Some of the things I am not going to go into in order to protect her privacy. However, things have not been easy for her. She is struggling with reading (she says the words move around on and off the page). She is having problems getting along with some of the other children her age. We have some appointments set up in the next 2 months at Vanderbilt. I am hoping they can provide us with more answers than we have now. We ask that you pray for the doctors we will be talking to, as well as us. We want to make the correct decisions regarding her care. Within these appointments are some appointments that will involve big decisions.

I - my 5 year old boy

I is still about the same. He excels in all things academic. He struggles with transitions and being able to deal with not doing something perfect the first time every time. He is very competitive and has problems dealing with losing in games. He is able to sit through classes now though without getting too upset and is able to deal with other children being around him. He starts K in the fall. I am going to be working with him until then making sure he can do everything they want him to be able to do. I think where he will struggle the most is the fine motor areas.

C - my 2 year old girl

She will turn 3 next week. Where did the time go?

C is still very behind in her development. The scales they do at doctor checkups put her at 18 months. She has a development screening through Child Find . It put her below the 7% in almost all areas. The only normal areas were cognitive functioning (meaning she is able to think and form some sort of answer at least in her head) and receptive speech. Both of those were in about 50%. Her speech is in the 3%. (This means that if you grouped her with 100 children her age, 97 of them would speak better than she does, 2 would not speak as well). In counting she was in the 1%. but they assured me that was her speech causing the problem and not a predictor of mathematical skills.

We also had what we had expected all along confirmed. She has a reduced visual field. (She can see just fine straight out, but cannot see to her sides or toward her feet.). They put her visual field at about 40 degrees. Normal is 180 degrees. This is what many people refer to as tunnel vision. (This could very well be due to her optic nerve tumors. We will have to consult the doctors a little more to find out for sure.)

She scored low enough on the screenings to qualify for a special education preschool. She will go 2 days a week. She will receive speech, occupational, physical, and visual therapies and interventions while she is there. She starts the week of her 3rd birthday. I have heard great things about the school and hope I will get to hear her really speak to me soon.

She also has a lot of appointments coming up and we ask for prayers that the doctors and we make the right decisions for her.

More Stuff

We are just taking things day to day at this point. There is no way to know what the future holds. People ask me what gets me through all the appointments and all the uncertainty. My answer to that is simple. It is my faith and the ability to count my blessings. I do not understand how people make it though things like this (and worse) without it. Sometimes when I feel down and the worry and mom guilt is getting to me, I listen to Christian music as well as turn to the Scriptures. Below I will share some of my favorite songs as well as scriptures. The names of the songs will be linked to videos on You Tube, so you can listen to them if you wish.

Before anyone gets mad and asks what I have to feel so bad about since my kids are still alive and their are kids who are sicker - I realize that. I do know I have a lot to be thankful for. Still, what they are going through is real. It may not be as bad as what other people suffer though..but it is still hard. I am not just "feeling sorry for myself" or "wanting attention". I just want people to pray for my girls (and Ian). I do not want life to be hard for them. I want happiness and health for them. I do count my blessings, as I said previously..that is one of the things that gets me through.

Scriptures This is not an exhaustive list...just some favorites. There are many many more that could be added to this list.

Psalms 9:9

Psalms 46:1-3

Psalms 91:10-11

Psalms 146:8

Matt 6:34

John 14:1

John 16:33

Romans 8:28

1 Pet 5:7

1 Chronicles 16:11

Psalms 23

2 Timothy 1:7

Philippians 4:13

Romans 12:12

Jeremiah 29:11

Psalms 27:4-5
Psalms 27:1

Isaiah 40:28-31

1 Corinthians 10:13

Joshua 1:9-11

Matthew 17:20

Deuteronomy 31:6

The book of Job is also an excellent source to go to when you are thinking you have more than you can bear.


Because He Lives

Blessings - Laura Story

Praise You in This Storm

Count Your Blessings (wish I could have found a better link for this one..this one sounds too autotuned for my liking)

I Know You Are There - Casting Crowns

Who Am I - Casting Crowns

Voice of Truth

It is Well With my Soul (please read the story at the bottom of the video. The person who wrote this song went through more than anyone should have to. Still, his faith in God gave us this beautiful song as a result of his anguish.)