If Only I Could Fix His Brain

My son loves when I hug him and kiss him on the head. He looks at me with such love in his little face. He is only 4'1" and I am only 5' so it is easy for me to do as I hug him. He is definitely a snugly guy.

I remember when he was much younger...when I would hold him...I would hold his little head in my hands wishing I could fix his brain. If only I could correct what went wrong with his brain as he was developing - he would be okay. He is a beautiful child. Perfect in every way...if only I could fix his brain. We still love him just the way he is!

I am done talking about my son!

I have had and endless week talking about my son. Analyzing every behavior problem he has. Why he does the things he does, what cause the behaviors and how do we stop them. It can be so draining. So here is a week in review.

Monday I met with the psychologist - we decided due to certain OCD behaviors we would raise the Zoloft. This, however, can cause behavior problems - great!

Tuesday we went to feeding therapy - talked about the foods he has been eating, the utensils and food textures.

Wednesday went for a second opinion. I thought we were meeting with a psychologist, but he was just a councilor. He determines if we need to see a doctor (we did) and scheduled us another appointment in June! What did we learn today - we are not alone, behaviors come and go and there is no magic pill.

Thursday - a free day, so I played golf!

Friday - he had a half day of school and a therapist came to my house. We discussed the behaviors of the past week with no solutions.

Saturday - another therapist - and again we discussed the behaviors and went out and worked on community activities.

Thank goodness it is Sunday and I don't have to discuss anything!

Unfortunately, some of these things will repeat week after week. Sometimes I wish we could be left alone. It's exhausting.

Daily Life

As I struggle daily with raising this child, in my mind I know that everyone has some kind of struggle in their lives. Most of the time they mask the troubles well, but like me when they are at home it is all plain to see. We must be strong for ourselves so we can face these emotions and go on day to day. I love my son more than life itself, but his care is grueling...somehow I (we) find the strength to get up every day and move on with our lives. I am a person who looks at life with my glass half full....this has to come from within.

Hooray The Holiday's Are Over

Who thinks kids need to be off for two weeks during the winter? This break seemed particularly long...maybe because my guy was more difficult. Having a child with disabilities with limited interest, skills and behavior problems is hard to entertain for two weeks. It is bitter cold outside...at least in the summer there are outside activities to fill our days. These weeks were difficult and made me feel sad. He couldn't even make it through Christmas dinner at my aunt's house. My guy lasted about ten minutes because he wanted to go outside and walk the city streets...like during the summer. My husband took him home screaming and had to drive back across town to pick us up...Happy Holiday's!

Head Banging

I find it hard to find time to write on this blog. It is hard from a time standpoint as well as emotionally...it's difficult. I think if I just type a few lines about the good or bad part of the day it might be a little easier.

So here is the bad...what possesses a child to intentionally bang his head out of frustration? Every bang intentionally hurting himself...then crying and continuing. Trying to stop him is even difficult. I don't get it...stopping this pattern seems impossible.

The good part of the day...I was able to sit with my daughter and peacefully watch the movie Julie & Julia. We both loved it!

Another sleepless night

Today I am tired. The Bub has been up during the night not wanting to go to sleep or getting up a 3:30 AM and staying awake. Not a great thing when he has to go to school. It's a gray and rainy day so that doesn't help perk me up.

His Crohn's disease is a little more active with loose stools again. We just can't win. I hesitate to start him on steroids again after finally getting off them. He was tested for C-Diff (an intestinal bacterial) that he has had before...it was negative. Yeah!!!

The doctor has prescribed a pro biotic supplement that is very costly and not covered by insurance. $90 for 30 packs. We will give it a try...it's experimental. What else can I do?

The Thrill Of Getting Off Steroids

On a low dose of Steroids in this photo.

Last week I took my guy for a check-up with his gastroenterologist. We have not seen her since December, but he is doing so well with his Crohn’s Disease it really was not necessary. The doctor has given me a little bit of a hard time over the last year and a half about my guy being on long term steroids. He has been on them since he was two...he is now 13...it has been a long time. Steroids are so evil. They are great at reducing the inflammation in the intestines, but they are so bad for the body...terrible side effects.

He was on a very low dose for the last couple of months...half of a ml every other day...I kept losing track of which day he would get them and which day he did not. Therefore, I just stop giving them to him. I knew it would most likely not affect his health.

When we saw the doctor last week and I told her the news, she gave me a long hug. She knew about my reservations with stopping this medication and was thrilled that I had taken him off. She has been a good doctor. We have had so many specialty doctors over the years…some of them have been so wonderful and others not so much. I have switch a few and others have moved on to other hospitals and I was glad to see them go.

For one thing, I cannot stand a doctor who has one foot out the door the minute they step in the exam room. I understand they need to keep to a schedule, but I think we deserve to have their attention for more than a few minutes. I have had doctors leave the room when I have not even finished asking questions or explaining my concerns. Then they send in a resident or nurse...you never see them again. This just happened to me recently and it still makes me mad!

Anyway, besides the steroids we also were able to stop taking prevacid. Therefore, we eliminated TWO medications this month…defiantly worth celebrating! I just hope his current condition stays the same.

This is an old photo, but it shows his steroid cheeks well.