Trying to cope and take care of myself

I recently took Andy in for a one month behavior recheck, I'll call it. It was with a nurse practitioner in Andy's very busy and booked up Physical Medicine and Rehabilitation office. He cried the whole hour that we waited to be seen, and he had been crying in the car on the way there. By the time the NP came in, I was in tears too, about ready to walk out. She quickly asked how Andy was doing, "a little better", I told her. Then she wanted to move on to me.

"You don't look like you are coping very well with all this", she told me, and asked "Do you feel you are on the verge of a break down, or how are you doing?". I was crying uncontrollably by now, finding it hard to speak. I get upset when Andy is crying for hours, and I start to feel out of control. I also feel helpless to stop his outbursts, and feel I am failing him.

She told me that my husband and I need to go to counseling to talk about our feelings and hard times with Andy. I understand that I need to go to counseling, and feel I would benefit from it. However, my husband does not feel it will benefit him. I also told her that when I was depressed eight years ago, I used exercise to start feeling better. Joining classes, and working out for a couple of months, helped me to climb out of my depression. Along with seeing my friends and family more. But lately, I feel I don't have the luxury of time to do that.

Right now, I don't use all the resources I have. I tend to isolate myself. Andy is a very difficult child. Difficult to keep happy and entertained. He has a very short fuse. When he gets angry, everyone suffers. Nothing else can happen, but trying to console him.

I have several sisters and friends that I could turn to, but I don't. I need to start scheduling more time to spend with them, so I won't feel so alone. My mental health is definitely suffering right now. The nurse practitioner felt that I wasn't making myself important, and she's right. I won't be able to take care of Andy, if I don't start taking measures to get myself better.

We are trying to sell our old house right now. That has been a priority for us. However, I need to make myself more of a priority right now. I can't continue to put myself on the back burner. There is too much at stake. If only I could find the time...

Surviving the Stomach flu

My daughter got the stomach flu two weeks ago, most likely the rotavirus. It struck without warning. We were driving in my mini-van and she told me she felt like she might throw up. I quickly moved a few things out of her way, tried to find a bag for her, and too late. She threw up three times, mostly on her lap.

She didn't show any signs previous to this. The most important thing to do to try and stop future vomiting is to move quickly to the BRAT diet. This is a diet made up of Bananas, Rice, Applesauce and Toast. It is a bland diet, that is most likely to stay in your stomach and not come back out. However, my daughter is very stubborn and insisted on eating a few cheez-its. They came right back up. Avoid all dairy. For three to five days if you can. I knew this from a previous time. It will surely get you vomiting again. Get some Pedialyte or Gatorade right away to help keep your strength.

My poor daughters flu got severe. She had diarrhea and vomiting, and was unable to hold down even a small sip of water or Pedialyte. After three days of this, I could tell she needed to get into the hospital Emergency room. She was also having fevers of 101 degrees.

She was so weak and tired, she could hardly walk. She really needed to be rehydrated quickly. She was admitted and given fluids intravenously for two days. We've heard horror stories of 4 and 5 year olds getting the flu and dying of dehydration, and we were so worried about her. I checked with her doctor first, and she agreed that she needed to go right to the ER. It was my gut feeling as well.

Andy and I got it too, however, ours was not as severe. After first vomiting, we both had just a liquid diet the first day, then moved to dry toast only on the second day. We were weak, but we were no longer vomiting.

Andy was hesitant to eat, and often turned down sips of water or crackers. By the third day, we were both getting very hungry, but we went very slowly with food. I could feel that my stomach was still very off. Andy was off school for the entire week, and so was my daughter.

Despite vigorous hand washing and hand sanitizer, I got it. I was also the one cleaning up after the kids after they were ill, so I figured it would be unavoidable. We also tried anti-nausea medications from the pharmacy, but it seemed to me if your body needs to throw up, then it will. Benadryl was also suggested to "settle" my daughters stomach. I'm not sure whether it was effective or not. It seemed it worked for a few hours, but as soon as she was ready for another dose and didn't get one, she would vomit. The doctor ended up prescribing Zofran, an anti-nausea medication, for when we left the hospital. It kept us from having to go back in, I think. She would tell me, "I feel queasy", and I would give it to her. I did this for two days, until it seemed she could eat again.

We later learned that hand sanitizer alone was not killing this bug, so kids at school were urged to actually wash their hands, instead of just sanitizing before eating. My daughter often just washes the soap down the sink after pouring it in the middle of her hand, so I have to remind her to spread the soap all around her hands before rinsing. My son can also get sick easily, because others have to handle his food for him. He also puts his hands in his mouth all day, so it is very detrimental for him to have sick peers at school.

The Mygo Kimba Leckey Ottobock chair became detached, son severely injured

This horribly heavy chair is a terrible choice. I hated it from the beginning. I should have fought harder to return it, but I was told it was "un-returnable". I caution you: Please do not EVER by a wheelchair for your child that has two pieces to it. If the seat part is not correctly locked in place to the base, your child will have a horrible accident like mine did.

I often have to take this horrid seat apart to get it in and out of my mini-van. I cannot lift it when it is all one piece. It is way too heavy. When I take it apart, it feels as though the chair weighs fifty pounds, and the stroller base weighs twenty pounds. The seat is heavier than my son.

I took this chair out of my trunk and assembled it for the 50th time probably. I hate this seat and I curse it every time I have to put it together. I thought Andy's seat was locked in place. I pushed him down the driveway to get on his school bus, nothing seemed off.

I get a phone call from the transportation office saying, "Your son's seat became detached, and you need to get to the next bus stop right away". They couldn't answer if he had been hurt they didn't know. I get there to find blood all over my son's face, and a horrible gash on his head. When the bus driver came to a stop, he and his seat went flying off the base, which was secure to the floor. It is so heavy, the seat belt going across his chest wasn't enough to keep them from slamming to the floor.

We went to the ER for facial X-rays and 6 stitches.

I cried all day long. I feel so horrible that this happened to my poor innocent and helpless son. He loves riding the bus, and now I don't know what he'll think of it. The bus driver and the mother at the next stop were great in caring for Andy until I got there. He was so upset, and I tried hard to contain myself all day. I had nightmares all night long.

Andy seemed happy after the incident, and was very playful. I'm still so sad, and blaming myself every second of the day. I would never buy a two piece chair again. NEVER.

Andy is doing a little better

Andy has been crying a bit less, which has been so great. He has been on Abilify and reflux meds for three weeks now. He has a runny nose right now, which I think is contributing to his minor fussiness. I feel like I've been in a dream, not having to hear non-stop crying every minute he is awake. I am scared that any minute it will come back, almost like a post-traumatic stress feeling.

Summer is approaching, and I am worried about how to keep Andy happy when he is not in school. He likes to swim, but the before and after with swimming usually don't go well. Especially when facilities don't have changing tables, or handicapped accessibility.

We now have a handicapped license plate. I don't tend to use it though, if I can get a spot that is pretty close to the entrance. It kills me when I see an elderly person that seems very capable of walking, pull into a "van accessible" spot, when ten other handicapped spots are open. I know so many people with vans for their children that need those spots. This makes me want to get a rear accessible van, instead of a side entry ramp. I don't want to be pissed at these people all the time.

I am so thankful that the weather has been nice. Andy loves getting outside. He likes being pushed around the block or on a swing. He also likes watching other kids play outside. It makes him squeal and clap. He's so cute when he's a happy camper.

Off Risperdal now onto Abilify

We were unable to live with Andy's behavior anymore. If he wasn't at school, he was miserable. I had checked every avenue of what might be causing him pain, and there was nothing. I decided it was time to wean him off the Risperdal, and get him onto something new.

The weaning was easy. I cut his doses in half until he got down to .25ml for three days straight once a day. Then I started the Abilify immediately the next day. Initially, doses of 3ml or even 2.5ml were too much for him. He would get very sleepy, and he'd be fighting through the sleepiness with crying. So, he was either sleeping or crying. Then I dropped down to .5ml, twice a day and I felt like I was just giving him water/nothing.

My husband hated it. He wanted to stop giving the new meds. But I knew that it would take a full two weeks to see what the results will be. The first week was hell. I waited until I knew the kids were going to be on spring break to start the new meds. The Abilify was started on Friday, then he was off school for the entire week, and he had the weekend.

I was in his physiatrists office crying to her about Andy's constant crying and telling her how I'll try anything. She suggested that we start an acid reflux medicine as well, just in case he might be feeling a burning in his chest from reflux, and can't tell us. Fine with me. I'm desperate.

It's been almost two weeks now. He takes the reflux meds twice a day, Miralax stool softener once a day, and Abilify twice a day. Right now he is getting 1.25ml in the morning and before dinner. I started out with 1ml twice a day, and am now inching it up slowly to try to get more improvement. When I tried 2ml twice a day, he was way too sleepy.

It does seem as they are on these meds for a few months, they start to need more of them in order to get the same effect. This is my opinion with my son anyway. It is like their body gets used to that dose and now they need more of it to have the same effect. He hasn't been gaining a whole lot of weight, but has been getting taller.

I pray for Andy's brain to develop, and for him to not cry as much. The nurse practitioner at Andy's office said she sees kids like Andy go through crying phases sometimes at age 3 or 4. She said the crying can go on for a year or more. Andy has already been crying a lot for the past two years. One of the moms in my support group said her daughter stopped her constant crying between 5 and 6 years old. She says she rarely hears her cry ever now. Her daughter is immobile/very limited physically and quite cognitively impaired. It helped me look forward to some time in our lives when Andy won't be constantly screaming.

Trying to tread water

Things haven't been going well. Andy keeps having long periods of crying and discomfort that last for days. He has seen an Ear, Nose and Throat doctor, a general pediatrician, and a dentist. All to give me peace of mind that nothing is physically wrong. His ears look well, but we may have ear tubes put in, due to persistent infections. His dental x-rays came back normal. His current neurological medication, Risperdal, could be the culprit for his constipation/intestinal discomfort, but we aren't sure. It is supposed to help his inconsolable crying, but it may be creating other problems.

For his constipation, I am no longer giving him Miralax every day. It is too rough on his belly. I think it gives him bad stomach cramps, so I am going to cut it back. I was giving half a capful, once a day, during times of chronic constipation. I can lay him flat, and feel hard stool by touching his belly. Or sometimes it feels like there is a sack of hard marbles in his belly. If his belly feels soft, I am only giving the Miralax 3-4 times a week. And I am now only going to give 1/4 capful. If I can feel his belly filling up, I will increase the number of times a week, not the dosage.

When he is constipated, he cries and cries from the stomach pain. When it gets bad I give him a daily enema during (pediatric glycerin suppository), and a teaspoon of Karo syrup (high-fructose corn syrup), plus the Miralax. I cut out bananas and applesauce, which are the reverse of the BRAT diet. Bananas, rice and applesauce help to stop diarrhea. I have learned and read that they can make constipation worse, and I've witnessed it firsthand.

Andy has hit several downward spirals in the last couple of weeks. We are trying hard to get through every one of his waking hours. I have also grown weary of Andy's physical disabilities. He doesn't seem to be learning anything, no matter what the amount of therapy or schooling. Just keeping him happy and not crying is such a chore. I fear the next four years will be just like the last four. And that if he still isn't walking by age 8, that he may never walk. I continue to be depressed about Andy's condition, and find it hard to get through each day.

My daughter and I continue to fight, she has expressed how much she hates me, and tells me all the time how she wishes she could live with another family. It is only when she is angry, which is quite often lately. She hurt my feelings so badly, I cried all evening the other night. My husband talked with her to tried to straighten her out, and I can tell she tries to hold her tongue now.

It is so hard to try to live a normal life, when things are SO far from normal for us. It is very easy for people to tell us what we should be doing, but so hard for us to carry it all out. I continue to pray the rosary for strength and compassion. It seems to help.

Andy's first time on the bus

 Andy had his first bus ride, and did pretty well. He was a little scared when he looked at the bus driver, but I stepped on the bus and said "you are going to school ok?". He wasn't crying. I was worried he might be afraid of the loud noises of the bus, but he seemed okay. My daughter and I were teary-eyed when he put his little glove onto the window. I drove up to the school and the staff said he arrived happy, and was glad to see them.

Today, the bus was a bit late, and we were waiting in the cold. So, Andy started to cry a bit, and was not happy getting on the bus. I hope these next couple of weeks go smoothly, as he adjusts to this new change.

Andy taking the bus does allow me an extra 45 minutes in the afternoon, and time to walk my daughter to school in the morning. She can also get to school on time now, and we aren't rushed to get there. When he arrived home on the bus, he was almost sleeping.

The parking lot is also very small at his school , and it is often hard to find a parking space. It's door ding central and always a hassle to back out of, because it is so cramped. Andy only has a couple of months left of school, so I'm hoping he can continue to ride the bus until school is over. It's already helping to cut a little stress out of my day!

Gabby's feelings came out about Andy

I was giving both kids a bath last night, and asked Gabby to be careful as she was dripping water into Andy's eyes. She immediately blew up, accusing that I only care about Andy. She said, "You only love him and hate me, and I wish he was never born. Then I could have more time with you, and have you to myself." She was in a huge rage, and has been having daytime and nighttime pee accidents lately. I think for attention, but maybe also stress and anxiety.

It seems like a big mess. I put both kids to bed early, and they ended up having a snow day today. I took the kids to my moms for lunch for a change of scenery. Gabby wanted to stay there, while I brought Andy home to nap.

I brought my concerns to my husband's attention last night. He heard the whole speech Gabby yelled out at me. I stressed that we have to plan activities this summer to do with Gabby. Such as camping and amusement parks. These things aren't really ideal for Andy, so one of us will have to stay back with him, or a babysitter. Gabby is right, Andy gets most of my attention these days.

We do have a place where we can camp two hours from our home, at our in-laws, but taking Andy there is often a nightmare. It is hard to keep him entertained, and the drive out isn't good for him either. But Gabby loves going there, and doesn't mind the long car ride. We've got to make some changes, things can't keep going this way.

I think Andy is in pain

My son cannot communicate with me. However, every now and then, he can manage to get out a few utterances. If he is extremely excited, or motivated by discomfort, I think he can get a few random words out.

My son cries a lot. Maybe it's frustration, and lately I think it could possibly be pain. I was holding him in a standing position the other night and asked him to take a step. He looked me in the eyes and said "It Hur", and I cried out "oh it hurts! Oh no, sit down then! It hurts?" I am searching out a new physical  Medicine and Rehab doctor. The University of Michigan isn't too far from us now, so I am going to try there. I found a doctor that specializes in neck and back pain, so we'll give him a call.

Andy often responds well to Tylenol, which makes me feel he is experiencing some alleviation from pain. I will also give Motrin if he has a full belly. When I've tried other ways of soothing first, I will sometimes move to these medications, and they do seem to help.

Andy had a good day

Andy was so fun today! He had a great day at his Valentines Day party at school. They said he ate a whole cupcake, and seemed to be on a sugar high. He was so happy when I picked him up. Maybe his rise in medication is finally kicking in? It's been about two weeks since it has been bumped up to 1ml a day. He was very smiley, and squeaky the rest of the day.

It might also be because he isn't in a lot of pain from his ear infection. Not sure on this one though. I took him in to see the doctor today, and she is going to raise his dose of antibiotics for ten more days. His ear infection is still there, and is mild to moderate. So, he does still have it, but maybe today it wasn't bothering him too much.

It was nice to not feel the tension I get from listening to Andy cry in a constantly irritated state. He was so happy and carefree, it was truly a blessing. I'd like to think our prayers for him had a something to do with it.