Wednesday, June 3, 2009

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 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's experimental. What else can I do?

Monday, May 4, 2009

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 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 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.

Thursday, April 16, 2009

Support Groups For Parents With Children With Disabilities

Last week I attended a support group meeting for parents at my son’s school. The social workers organize a meeting once a month with different topics, sometimes a speaker. Last week’s speaker was the behavior coordinator for the school and since my son has some behaviors I would love to eliminate, I thought maybe she could help.

I don't really attend many of these meetings for a couple of reasons. One, I have a lot of family and friends in the area and feel I get plenty of support from them. So maybe I don't need that additional support from others. Second, I sometimes like to just have that time to myself instead of driving the half hour distance to the school each way...I might prefer to walk through the mall as my therapy for the day.

I will have to say that once I get there I am always glad I went. No matter how much support you get from those who know you well, no one really knows what you deal with on a daily basis than a parent who is going through the same things. There is comfort in knowing someone understands your life...they get it! I can tell you the older my son gets and the more time that passes, I know that for me not many people who know me have any idea what goes on in my life. They just don't get it. The struggles, the illnesses, the endless therapies, and the simple things in life that we would like to do as a family, but can't. It makes me want to cry right now as I type this. Most people just go about their lives and never really understand or give it much thought. Now I would have to say that I would not really know what it was like to go through a life threatening illness either, so I don't really hold it against people that they don't understand my life. From time to time it does really make me angry. Maybe I am just angry at the situation...why didn't I get the perfect family!

Well, at this last meeting another mother was explaining an "eating out at a restaurant situation" and as she finished I laughed a little...because I could relate. It was my life she was also describing, with some slight differences. So here we are two strangers with so much in common. Something no one we know can understand about our struggles and the longing for the situation to end or at least improve.

And so for that day I was glad I went. As for improving my son’s behavior…the speaker was excellent. I hope to get more support from the school with additional guidance on helping with the behavior problems. It will be a long tough road for improvement. Like any child they know how to get their way.

Monday, April 6, 2009

Sleep Issues With Children With Disabilities

Sometimes I think I am a genius. Of course I am the only one who thinks this, but from time to time I come up with something brilliant. I do most of my creative thinking at night...things just pop into my mind!

So my little guy is 13 and my daughter about to be 16. I would have to say in the past 16 years I have not had many restful nights of sleep. By this age you would not expect your children to interfere with a good nights rest...not so. I feel destine to never get one.

My guy can stay up all night, and he has pulled all nighters,just focusing on the light on the VCR in his room. Right now he is very interest in the blinking green light in the smoke detector. I have to cover everything making the room as dark as possible so he can't see much and focus on it all night long. Yes, it is a nightmarish situation. I so need my sleep.

I went to an over night sleep study at Children's Hospital several years ago and he stay up all night with wires all attached to his head. All the machines, monitoring the brain activity, had bright green glowing lights. I think he slept for 45 minutes that morning. I got no sleep at all.

Vacations can be a nightmare. In a new environment he never sleeps well. The first night last year, at the beach, he went to sleep at 7:30 in the morning spending all night roaming the 3 bedroom condo. Mind you there were people sleeping in the bedrooms. He also had a fixation with one of the bathrooms. Once in Disney everyone was sleeping, but my guy was again up all night I couldn't sleep. I took the the bedspread and laid it on the bathroom floor trying to sleep there. I was desperate! Somehow I manage to spend the whole day at a water park.

Anyway, the sleep issues have not improved much over the years. Sometimes he is up to 2 or 3 in the morning. The problem is that then I need to get him up for school. It's difficult...he needs bathed, dressed and fed. Then he sleeps at school...and the teacher is not thrilled with this...what am I supposed to do. Does she think I want this!

So a few weeks back, at about 3 in the morning, after several night in a row of being up for a couple of hours each came to me! The fish light. My guy has loved these lights for years. I bought the first one at a mall kiosk about five years ago...and he loved it. I went back before they moved out and bought a rectangle one. Then last year I was at a garage sale and someone was selling 2 of them. I thought I would give one to the school, but decided to keep it. So now we have four. The Small round one is his favorite.

Often these light would cause my guy to fall asleep during the day while watching them if he was tired. Now even though he is tired at night he gets himself too worked up about something in the room that he can't go to sleep. So the one night (when I just wanted to cry because I was so tired) I got the fish light out and sat it on a chair next to his bed. Within 10 minutes he was asleep...a miracle.

Now almost every night I get the light out and set it next to the bed. It is such a relief to know that he is asleep before me and that he can get a good nights rest. The lights get a little warm so I like to turn it off before I go to bed. I don't want to leave it on while we sleep. But it works!!!

I know many of these kids have trouble with sleep. If you have any great ideas...please share them. It's not an easy life and we all have our moments of least in our own minds!

Saturday, March 21, 2009

Another Teenager In The House

It's had to believe my baby is 13. He is such a little guy (the size of a 5 year old) I don't think of him being that old. He is as snugly as a toddler. In some ways it is still nice to have a little guy who still likes a snuggle.

Always a little puzzled by this cake and song ritual.

Friday, February 27, 2009

The Beginning - A Journey Of Raising A Child With Disabilities

Today is as good as any to start this blog. Today is Bub's Birthday...not his real name. He was born on Leap Day, 1996 and is 13. I don't know where the time has gone, but it has been a tough road. Life is a little better now because there are not as many medical issues going on with him, but the days can be long and the constant care can be grueling.

He was born 5 weeks early. I had mentioned to the doctor that he wasn't moving as much and she sent me to the hospital for a non stress test. This indicated that something might be wrong and that he should come out. That night I had a c-section and there he was... a little 5lb. 4oz. baby boy. Of course, when they decided to take him out, I'm like "what is today's date?" I was distraught over it being Leap Day. It wouldn't be fair that he only could celebrate his birthday on the actual day every 4 years. Obviously, in the end it didn't matter. He doesn't even know what a birthday is, what presents are, or why we put candles on a cake and sing. His favorite part is watching the smoke rise from the candles as we blow them out for him. This is how you come to find joy in the really simple things in life.

At this time we had no concerns of anything being wrong. It was thought that the issue was with the pregnancy not the baby. We went home from the hospital in a couple of days and went on with life. This is the time when you think your life is complete...things are not always as they seem.