Rescue drug

Andy's neurologist told me today that I need a "rescue drug" when Andy is having his temper tantrums. He screamed during most of the visit. His high-pitched screaming was giving us both a headache. He told me I was enduring too much suffering dealing with Andy, and I deserved to be rescued. It is some kind of prescription wafer that will melt in his mouth. I have yet to see if CVS carries it. I'll try tomorrow. He told me, "he needs one right now"!

We are in the new house

Andy is adjusting well to the new house. He is napping fine, and sleeping through the night. The bus hasn't started to pick him up yet, so I don't know how that will go yet. It has been chaotic trying to unpack, and we still have more boxes to move from the old house.

Hoping to Stay Healthy

Andy loves going to school. He has a lot of fun there, and is always happy and smiling when I pick him up. I hope that he can stay healthy enough to go for a full week every now and then. When I see him running a fever, I keep him home. Unfortunately, he has had quite a few colds lately.

Andy is in a class of ten children, including him. All of the kids are mobile, except for Andy. As of a few weeks ago, an additional assistant was hired to help Andy in the classroom. It's really nice to know someone is right there to make sure Andy isn't going to get stepped on by another kid. Also, to help keep kids from taking every toy away from him, or to help him to stand, and move him from station to station. It really puts me at ease to know he has someone looking out for him the whole time he's there.

Taking my mind off of worrying about Andy

We are packing up our whole house and getting ready to move about 30 minutes from here. It is really keeping me preoccupied. I have also started trying to run again, thanks to my husband. He is going to attempt to run a full marathon at the end of May. I think it is helping him to have something else to focus on. He'd like for me to run the 10K, but I don't feel confident that I can do it. So, for now, I am focusing on packing.

I am also thinking about decorating the new house. It gives me a lot to think about. We have a budget, and can't go crazy, but I think we can find a good style that isn't too expensive.

Andy had a great day at school today, and was so happy there. It was his first day back after Christmas break. It's a bummer he only got to go for one day! I think he'll be upset there's no school tomorrow. He seemed really happy when I told him he had school today. It even sounded like he tried to say "go", when I told him he was going to go to school.

I still have Andy taking Risperdal, .55ml now, because it seemed he needed a little more to help his temperament. Although, he does still have outbursts to try to communicate he doesn't want something. I am a little concerned about my son taking an "anti-psychotic" drug. I've read about these types of drugs inducing breast growth in teenage boys, and I will have to raise my concerns with my son's neurologist.  We will be seeing him at the end of the month.

I have tried taking Andy off of this medication before, and the results were bad. However, I am  concerned about Andy's recent constipation. He has been having hard stools and I have to keep an eye on it. It is a side effect of Risperdal, so we may have to stop or switch to something else if it persists.

Words and sounds stopped for months now returning

Andy hasn't been making sounds or attempting to say any words for months. He has had a very frustrating last few months. He had ear infections that wouldn't go away, followed by constipation. Then he had a very inconsolable Christmas eve and bad Christmas vacation. It made me increase his Risperdal dose to .50ml, then to .55ml, which seems to be making him happy again. However, I've noticed a slight night waking going on, once a night. He goes back to sleep after 20 minutes or so, but babbles for a bit first. We will meet soon with the neurologist to see what other meds we could possibly try with Andy. If he continues to require more and more of this medication, I am concerned about his sleep being slightly affected.

I recently started Andy back on Gummy Omega-3 vitamins, and he's been feeling better. He isn't ill, and he is taking a higher dose of Risperdal, which is putting him in a better mood. Today, he seemed to be using "wa-wa" to ask me for water. I hope, so badly, that this continues. He has also been continuing to wave to people at school, and family members. Seeing any kind of communication from him is a real joy. He seems to understand when I talk to him sometimes, but I just don't know for sure.

Andy has recently grown two inches. He is also getting noticeably bigger. It makes me wonder if maybe his brain has matured a little as well. This could be the reason he is trying to communicate with us now, paired with school, and feeling better.  I know that he typically moves forward, then slides backwards, so just waiting to see what happens next.

Dr points out constipation

Andy was pretty irritable when I picked him up from school yesterday. He cried all the way home, and wouldn't eat lunch or dinner. I thought his ear infection was back. I took him to the doctor the next day, and she said his ears looked great. Then she felt his belly, and found he was badly constipated. She could feel a large hard stool in his belly. She showed me how to feel for it too, it was like a big rock in his stomach. He had been having small poops, but I didn't think anything of it, because he had a small appetite while he was sick.

We headed up to the drugstore for a pediatric glycerin suppository as advised by the doctor. You don't need a prescription for this. The doctor told me that if only small stools continued to come out, we would have to resort to a stool softener. One small stool when he woke from his nap, plenty of water, and he ate dinner. Then in the morning no stool, and more irritability. I read on line to try a teaspoon of corn syrup, and olive oil on veggies, which I cooked in the toaster oven. Then he ate lunch. I gave him another pediatric suppository, as it had been 24 hours since the last one. They can only have one a day. It took about ten minutes, he relaxed in his bed, then had a large stool. Finally! Poor thing has been miserable, and couldn't tell us why.

Pesky Ear Infections

Andy and I have been sick since Thanksgiving. Germs keep coming and going. Andy spent all night Saturday and Sunday crying and uncomfortable, so we went into the doctor Monday morning.  Poor Andy had an ear infection and an eye infection that was being treated by antibiotics. He stayed home from school for a whole week.

We actually had a lot of quality time together. He just wanted to snuggle and cuddle with me, and kept looking right into my eyes and smiling. He was so comforted by me, it was really nice. I felt like he was saying "thank you, I love you" with his eyes. He seemed to be getting better. Then on Sunday night, he woke up screaming and was out of control with crying for over an hour. I headed up to urgent care with him.

His ear infection was coming back and was now in both ears. They felt his current antibiotic wasn't working, so I went back to his general doctor first thing in the morning to follow up. Andy received the first of a three day series of antibiotic shots.

We felt so bad that Andy couldn't communicate to us what was wrong, when he was in so much pain. I'm glad I decided to just take him into the doctor once I realized I couldn't console him, and it was unlike other times in the past.

Now that Andy had a shot of antibiotic, he is feeling so much better. He had such a great day at school. I think he is relieved to be back at school, and that he is finally out of pain.

Andy's school update and family update

Andy's current state has been pretty good. He loves going to school. He shows affection towards his classmates, teacher and all school staff. He seems to enjoy being there. He is happy there. I spent the first several weeks with him, and then slowly stepped away.

I feel Andy's quality of life is better with school in it. There is only so much I can do to keep him happy and occupied. Meeting new people and having new experiences has been good for Andy.

Andy continues to take Risperdal, and needs it daily. He is a mess without it. It helps him to be cheerful, and not irritable all the time.

We are a family with a special needs child, and this is not easy. I still have very negative patches, but I keep trying to find ways to go on with my life. My daughter needs me too. She often falls by the wayside, when I get swept up with all of Andy's needs.

Having Andy and discovering all his limitations swallowed me whole. I can still become engulfed in it, but I have to still be a functioning wife and mother to my 5 year old daughter. I still have to try to enjoy my own life, and it's tough. I feel guilty when I focus on myself or my daughter. I'm trying to find a balance, so I won't be miserable. I am what holds this family together, and I have to be positive, upbeat and refreshed.

Andy is happy, and I should be happy for him. He does not know of his limitations or things he is missing out on. My goal now is to just try to make sure that my whole family's quality of life is good. I am ready to do what I need to in order to make sure my family has what they need.

We can still have great quality experiences, even if it is a challenge to do so.

Take care,

Amy

Waving Hi?

Andy is three and a half now. I've seen skills emerge and backslide too many times. Words come out of his mouth a couple of times, then I never hear them again. Or the army crawl emerges, then goes away for a long time. Right now, it seems he is trying to wave "hi". I really am not getting too excited about it, because I feel it will just go away in a few days, like all his other skills do.

I am hearing him say random words, then never again do I hear the word. I feel so upset, because it seems like his words are in there, we just can't get them to come out. We've both been really sick, which has allowed a lot of bonding time for us. He's been really cuddly with me, and giving me a lot of eye contact and smiles.

I am getting a lot of therapeutic toys for Andy for Christmas. I'm hoping that just pushing along, and not looking back will get us somewhere.

Lovely Day

Andy has been having a great time at school. He really likes everyone there, and has been really happy to be there. I am able to drop him off at school and go run errands on my own, it has been nice. I've been praying for him to have a better time lately, and I've been feeling better as well. He's not always happy, but he's been having good days here and there, which is a nice change.

I recently tried to wean Andy off of his Risperdal, but it went very badly on the days that he got no meds at all. So, I quickly started him back on the Risperdal at .25ml a day. When I went back up to anything over .30ml he was way too sleepy at school. We are sticking at .25ml a day, and I don't think I'll try to take him off again until the summer. I'm too nervous for him to have terrible days at school, I think summer break would be a safer time to try it. I was curious to see how he would do without getting the meds, and it didn't seem to be good. I wasn't patient to give it more than a couple days, so for now he will stay on the meds.