Tuesday, December 31, 2013

We had a good Christmas

We had a pretty good Christmas. Andy didn't have too many outbursts. He enjoyed new musical toys like pianos and trucks. I was worried I would have a really hard time with him out of school for two weeks. He has been manageable. When he has outbursts, he usually just needs time alone in his room, and often falls asleep.

Wednesday, December 18, 2013

Three weeks off of Abilify

Andy has been off Abilify since November 30th. It's been almost three weeks. I've been looking for signs of withdrawal, but don't really see any. He is still on Trileptal, which is a mood stabilizer. When he is having an angry outburst, and he receives 3 ml of it, he calms down within 20 minutes. He is getting it twice a day now. I am not interested in weaning him from the Trileptal just yet, but my husband would like to in the future. He is still having constipation issues. So, I keep a diary of how often he is having bowel movements and the size. I was told by a nurse to continue to give him a stool softener daily. Also, if his bowel movements have only been very small for several days he gets stool softener more than once a day, or something else to make him have a stool. This usually helps his behavior, and a low appetite to get better. The iPad is working again, so he really enjoys his interactive musical games, such as the Itsy Bitsy spider, by Duck Duck Moose.

Tuesday, December 3, 2013

Weaning off Abilify

I have weaned Andy off the Abilify. At one point, he was taking 5ml a day. It didn't seem to help much. He still has outbursts, whether he is on it or not, so I am taking him off.

I decreased him by .5ml each week. It took ten weeks. He had constipation several times during the weaning process. The main change I've noticed is that he is not as sleepy. Some days he does not want to take naps, but he will lay in bed for a quiet period though. The first night he was totally off Abilify, he did not go to bed until 1am. He did take a late nap on this day though. His body is slowly adjusting back to his regular sleep schedule.

I believe he is just getting older, and this is the main reason he isn't napping as much anymore. My feeling was to see how Andy's behavior is without Abilify, because I think he is just irritable Andy no matter what we do. He has happy times, and outburst times. During the outbursts, he is put in his bed, which he can't get out of, until he calms down. He cannot get out of his bed, because he still cannot sit up on his own. He can only roll around, and pull himself with his arms, like army crawling.

I have started up the orange flavored fish oil again. Once a day, he gets it with yogurt or ice cream. He's been getting it for about a week. I use the Omega-3 squeeze packs for him. Since the medication has been removed he seems a bit more alert. He is still on Trileptal for a "calming effect". I am going to start weaning this as well, after I talk to his nurse practitioner.

Tuesday, November 5, 2013

Time for some changes

I hit another breaking point on Friday, and canceled all my son's physical therapy appointments. My son has gotten to know our therapy routine, and when its time to drive there, he cries the whole drive there. He knows where we're going, and he protests it. He often has to be calmed during the therapy visit, and it starts to feel like a waste of time to me.

I feel that my son can only handle 8-12 weeks of therapy at a time, and then he needs a break. This has also been noted in research articles that sometimes short bursts of therapy are more effective. My son seems as though he's had enough for a while, it's just a gut feeling I have.

On top of all of this, I have been feeling sad and depressed again about my son's lack of progress. I see other children in his class progressing, and they seemed to be able to do less than Andy in the beginning. This was true when he was in the 0-3 group as well. All the other kids would be advancing so much, but not my Andy.

I'm going to finally seek out a counselor now. Before my sadness completely overtakes me. My doctor gave me a recommendation, I just have to call them. I know what it feels like to be so far in the hole that it's hard to get out, and I'm halfway there. I can just be at the grocery store and start crying in the aisles because of my son. Or driving in the car, and start crying due to sadness about Andy. It's starting to affect my normal functioning. So, it's time.

Friday, October 11, 2013

The caseworker came today

I called our county mental health department to ask for help with my son's constant crying last week. The caseworker came today and met me and Andy. I cried a bit when asked how I'm dealing with all this. Andy cried a bit too, in spurts. He watched Dora the Explorer, and Yo Gabba Gabba to keep calm. It worked a little.

The visit took two hours. I had to hand over copies of financial documents, and medical documents and tell of my struggles with Andy. I think the caseworker could see that I was struggling to hold it all together. I was genuinely having a hard time, and it came across.

They are supposed to provide a respite coordinator within 14 days. Then we should be able to start receiving weekly help with Andy. We will have to pay for the help, but that's okay for now, I just need the help.

Tuesday, October 8, 2013

I've hit my limit

I was finally pushed over the edge with constant crying and contacted the local health department to ask for help obtaining respite care. It isn't something that's easy to find online. Respite care, would be having a government worker come to my house once or twice a week, to help look after Andy.

Andy's doctor and social worker kept asking me if I had contacted them yet. I just wasn't compelled to pull the trigger yet. I kept thinking I would do it someday, and the day finally came. I just let Andy lie there and cry on the floor, while I made the call. The woman could hear his blood curdling screams, and she said they could come to the house in a week to "screen him".

They have to meet Andy in person to see how much work he really is. How bad off am I? How stressed does Andy make me? I've got to show them and state our case. Then we can pay a worker to come over for a couple hours here and there to help entertain him.

I just can't bear the full brunt of Andy's needs right now. It's worn me too thin. My fuse is gone. I'm calling my mom and mother-in-law as soon as he's been nonstop crying, and asking them to take him. I drop him off and take off myself. I have to right now. I'm just trying to stay sane.

Thursday, September 12, 2013

Differences between a Lactose-free diet and Casein-free diet

Andrew's Rehabilitative doctor, who only sees children with special needs, had some information for me about Andy's diet. She suggested a month ago that I should remove dairy from Andy's diet. Telling me that for a lot of children, DAIRY in general can cause irritability. I agreed to remove dairy.

When I spoke to Andy's GI doctor a week later, I asked him if I could use lactose-free products for Andy, he told me yes. Andy has been using lactose-free milk, cheese and ice-cream for a month. When I next saw the rehab doctor, she further informed me about maybe trying to take Andrew casein-free, instead of just lactose-free.

She explained that lactose is the milk protein, and casein is a milk sugar. She said sometimes, the milk sugar is the problem, not necessarily the lactose. She said the only way to remove casein from Andy's diet is to remove all dairy products- completely. Lactose-free items still have casein in them, the milk sugar. She said often times if you are trying to remove lactose from your diet, you can safely do this by removing all casein, because where there is milk sugar, there is usually lactose.

I added that Andy doesn't get diarrhea when he has lactose, so I don't feel he absolutely has to be off lactose. However, he has been less fussy, but possibly due to his new anti-seizure meds. They have a side effect of helping curb irritability. I will continue to limit Andy's dairy, and see how he responds when he has a piece of cheese pizza or ice cream. If he becomes very fussy right afterwards, we may need to eliminate all dairy.

Luckily, Andy isn't a big yogurt kid, or milk-drinking kid. But it is when we have pizza, that lactose-free cheese may not be enough to keep the fussiness away. He does get a bit of gas after having dairy, so it could be making him irritable at these times. I need to observe further to know for sure what his diet needs to be.

The main take-away message I got from the doctor was, "When Andy gets REALLY fussy, what did he just eat?". And keep in mind a list of these foods to avoid.

Tuesday, September 10, 2013

Crying out of control tonight

Andy's crying is out of control tonight. I've given him Tylenol, and Orajel on a gum that feels broken in the molar area. We've turned up the air conditioning, dressed him in lighter clothing, talked to him soothingly. I walked him around and showed him that everyone is going "night-night". We told him that he gets to go to school tomorrow and take the bus. He seemed excited. But then when he lays down he is angry.

It could be the broccoli we had for dinner, or a tooth coming through. I just don't know. He has been crying for over three hours now. I am in my room with fans running and a white noise app running on my phone, because his constant whaling is driving me bonkers. I have to just not hear it for a while.

This is just what sometimes happens, and he has no way of telling us what is wrong.

Wednesday, September 4, 2013

Getting out of the house

I took Andy to my nephew's glow bowling party, and he did well there. He enjoyed when the black lights switched on and we were all glowing. I myself was invited to join a bowling league, and am excited to start it once a week. I will most definitely enjoy getting out without the kids, and not just to run errands, but to have some fun.

Friday, August 30, 2013

Special Needs Parents are grieving

I went to a local support group that a teacher of special needs children started for us parents, and it has been good. The teacher just started a facebook page and set up a once a month meeting at the library for us, and it is what we needed. I would suggest that anyone start one with parents at your child's school if you don't have one. Meet at a coffee house, or library, or one another's houses. It is very necessary.

Special needs parents are grieving. The process is long and may never really end. I tend to bounce around the different stages of grief. There have been many months when I walk around with a smile on my face but I am dying on the inside. My tears just start to well up so quickly when talking about my son.

I remember so many times, just visiting the special needs programs with my eyes so misty. "I can't believe this is real", "I can't believe my son has to be here", were my thoughts. My son is not only disabled, he is severely, multiply disabled. That is the reality.

I would sit down in meetings with therapists, or school staff members and go through my sons history and just be trying so hard not to cry. I was just absolutely dying inside. It has gotten better over the years, now that he is four. I still get teary, but I can dry it up more quickly.

We are grieving the loss of a normal child, plain and simple. I am lucky that I get to have a normal daughter, as well as my special son. I have a separate pain for her, because she is constantly reminding me that I don't give her the attention she needs and desires. She says, " I wish I was disabled too, so you'd love me as much as you love Andy". It kills me. It truly rips me apart inside.

Despite all the hurt, Andy and Gabby truly love each other, and she is the light of his life. They were meant to be together, as he was meant to be with us.

Trying a lactose free diet for irritability

I took Andy to see a Gastro-Intestinal doctor for the first time a couple weeks ago. Both he and Andy's PMnR doc suggested that we try to make Andy's diet lactose-free for a while. I was told that for some kids, even a small amount of lactose, can make them highly irritable.

Andy doesn't experience diarrhea from lactose, but he may be experiencing bloating and gas from it. He has been on lactose-free milk, sometimes Almond milk, lactose-free cheese slices, and Breyers vanilla lactose-free ice cream. All found at Krogers. Sam's club also sells the silk almond milk. I could not find the lactose-free butter or cheese for the longest time! I brought it up to my mom, and she said you have to look in the organic foods section of your store, it is not with the regular dairy items. At Kroger, it is towards the front of the store.

Andy's irritability seems a bit better, but it is hard to tell why. He has also started a new anti-seizure medication, but not for seizures, he doesn't have them. The medication has a side effect of helping irritability, so he is taking it on top of his 5cc of Abilify each day.

Andy's irritability and inconsolable crying didn't become a major problem until after two years old. Between two and a half and three years old was a tipping point into the ugly. Major crying spells with no end, drove me to the doctor begging for some kind of medication for him.

The medications aren't always enough. He still has major temper tantrums, I think due to his age. If he is bored and not getting attention, he gets pissed. When I can't stand the crying any more, I have to say "That's it, let's go for a car ride".  Anywhere. Who cares. Just drive this kid around, he loves it. For a short while, anyways.

That's why he loves school. There is so much stimulation there, and so much going on. He is constantly entertained. He loves seeing other kids playing and having fun too. It makes him happy. Just like I try to keep him happy and not crying all summer long. Thank God for school, I just can't wait.  And also for now he will remain lactose free, because I need all the help I can get.

Friday, August 23, 2013

We got a night out / Carrie Underwood Concert

My husband and I got a night out. We went to see Carrie Underwood. Unfortunately, we had to drive two hours to get there. But I guess it gave us four hours alone to talk uninterrupted by kids. The venue was outside at the Soaring Eagle Casino and Resort.

I love going to Soaring Eagle Casino in Mt. Pleasant, Michigan. We played slots while waiting to see Carrie, because we got there at 5:00pm and were told she wasn't coming out until 8:00pm. They had a DJ on at 6:30, but the seats were so cramped and small, that I didn't want to sit there anymore waiting.

The slots were fun, and easy. It's been years since I had gambled there. I was able to just slide my money in, and then when I was ready to cash out my winnings, it gave me a receipt. I didn't have to stand in line for a teller.  I just put my receipt into a machine, and it spit my money out like an ATM.

Let's get on to the show! I was so excited to see Carrie Underwood, and she totally delivered. Her vocals were very on point and true. She flawlessly delivered a great performance. She shared with us how the first time she ever got on a plane was when she was 21 trying out for American Idol, and never dreamed she'd get to perform in all the places she is now.

She looked great. She had white shorts and brown cowboy boots, and wore sunglasses until the sun went down. There were pictures behind her that would change for each song. There weren't any outfit changes, which I was hoping she might change at least once. But I figured since it was a smallish crowd, maybe it wasn't going to be that involved. I just like seeing the different outfits people wear, and like to see performers mix it up a bit.

Very happy we went and it was a great night out. I was able to forget about all the every day worries with Andy and Gabby, and get better reconnected with my husband.

Need help at doctors visits

The last few times I took Andy to the doctor were an absolute nightmare. He screamed and cried while I filled out the forms at the GI doctor. He screamed so loud while the nurse was trying to get his vitals and ask me questions, I couldn't hear what she was saying. I was there alone, but what I needed was to have my mom there to walk him around while I tried to talk to the staff.

The nurse asked if there was anything I could do to calm him down, and I told her "nope, he's always like this". He wanted to get out of there, really. The receptionist was the most annoying when she kept coming into the room, with Andy screaming to tell me "I can't find your pharmacy in our files". Like its my fault. I pulled it up online and said "this one, here's the address and phone number". She came in a third time to tell me "You are going to have to just use the hospital pharmacy downstairs because I can't add your pharmacy into our system". I just told her "Whatever I don't care right now", as it had been well over an hour of Andy's constant screaming.

I asked one of his behavioral doctors, "Can I leave him at home next time"? She said "sure," she had seen enough. He doesn't need to be there to discuss the effectiveness of the new meds we were trying. However, I really do need someone there with patience, like my mother, for the next new patient visit. If my husband goes he will just end up punching someone in the face.

Tuesday, August 20, 2013

Stayed Overnight at Great Wolf Lodge, Travel Bed for special needs

My mom found a great blow up bed with sides on it, and an air mattress that fits inside at Walmart for $35. It is great for traveling, because it eases my worries of Andy falling off the bed. It came with a hand pump and canvas carrying bag.

Having the bed made me brave enough to try to take Andy somewhere overnight. We drove to Sandusky, Ohio and stayed at the Great Wolf Lodge waterpark and hotel. It is just a few short miles from the Cedar Point Amusement Park, which we visited the next day.

The bed worked out great. My daughter could also fit into it and she is 4 feet tall. He slept in it alone though, next to my bed. Andy surprisingly did well during the whole trip. He had one bad episode while waiting for food at Applebees.

He even did well at the arcade inside the hotel. He really liked all the noise and seeing all the lights on the games. He stayed entertained and didn't cry while sitting in the stroller.

He fell asleep easily in it, and didn't roll out of it. If I sat him up in the bed though, he could lean back and then roll out of the bed. He is unable to sit up on his own though, so it wasn't a problem.

I bought a "puddle jumper" for the trip also. It is a better, coast guard approved, life jacket for Andy. I got it online. This way he could wear it at the waterpark, instead of the huge ones that choke him they require kids under 42 inches tall to wear. It worked out much better, and I could carry him around easier with it on. It was $22 on amazon.com.

Monday, July 29, 2013

We bought a stander

We bought a stander off Craigslist, an online classified ad site. It is a tumble form tristander with a tray. The family we bought it from was so happy to see Andy putting it to good use! Andy goes in it several times a week for 30-60 minutes. Sometimes, every day. He is watching TV.

Monday, July 1, 2013

Potty training special needs children

Andy cannot stand up or walk, but can sit on the toilet really well. Before I didn't see the point in trying to potty train, because Andy cannot walk himself to the toilet. However, he is keeping his diaper dry for long periods of time, and doesn't like being in the diaper, once he wets it.

He can understand a few things. If I offer him food, he will open his mouth. If I put his cup with straw in front of him, he will open his mouth. He has certain instincts I guess. So, I wondered if I sit him on the potty, will he pee in it?

Andy lately will keep his diaper very dry for three or four hours, then he will do one big pee. If I notice his diaper has been dry for a while, I have been siting him on the potty and asking him to pee. I have to talk to him and be patient and keep asking him for about ten minutes. He seems to be concentrating and thinking about it. He will then pee for me.

I cheered and clapped for him and told him, "I'm proud of you. What a big boy, you peed in the toilet". I don't think he likes having a wet diaper, and he will fuss when he wets it. So, I'm going to give this a try for the summer anyway.

My normal/typical daughter also took a while to understand what I was asking her to do, when I would put her on the potty. Sometimes, I can see Andy attempting to go, just like she would. After a while, I tell him "Good job trying to go pee-pee, now we are all done. I'll put your pull-up back on". Even if it saves me a few pull-ups/diapers a day, its worth a try.

Monday, June 17, 2013

Irritable days

Andy was very irritable for four days. Of course, my husband was cursing the Abilify, and I was trying to keep Andy from driving us crazy. The doctor checked him out and found nothing. Two days later, I had a sore throat and congestion. So, I'm guessing this is what was making him so upset.

I did give him Tylenol on the last two days, even though he showed no fever. I'm glad I did now. It probably helped his throat a little.

We will be taking Andy to a Gastro-intestinal (GI) doctor in August. We want to rule out acid reflux. A practitioner told us that a high percentage of non-mobile kids suffer from reflux, and we aren't sure with Andy. We have been blindly treating him for it, and don't know if it is making a difference in his behavior or not. If he has a scope of his esophagus done under anesthesia, he will have to stop taking the meds two weeks before. We will also be trying to have a surgery coordinated with this, so that he may have his ear tubes placed at this time.

Every fall and winter, Andy gets between four and six ear infections, which is too hard to bear any longer. For him, and for us.

Thursday, May 9, 2013

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...

Friday, May 3, 2013

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.

Friday, April 19, 2013

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.

Tuesday, April 16, 2013

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.

Tuesday, April 9, 2013

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.

Wednesday, March 20, 2013

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.

Monday, March 4, 2013

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!

Wednesday, February 27, 2013

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.

Friday, February 15, 2013

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.

Thursday, February 14, 2013

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.

Sunday, February 10, 2013

Ear infections again

It turns out Andy's nonstop crying was an ear infection. I took him in right away the next morning, after he had such a bad day. He was seen on a Saturday by my doctor, so his pediatrician still needs to be notified of his ear infection. Largely due to the fact that he had to get antibiotic shots last time to take the infection away, when oral antibiotics weren't working. He hasn't eased up much this Saturday and Sunday in terms of the crying. But having my husband home with me made it much better. I will let his regular doctor know about his ears, and I think she will need to see him and administer the shots.

I would like to take him to an Ear, Nose and Throat specialist. He usually gets about four infections a year, which I know doesn't really qualify for ear tubes. But with Andy, he has NO way of telling me what kind of pain he is in. So, I figured it was constipation, and no idea it was his ears. The nurse asked me if his ears and throat had been checked when I told her of the constant crying and I thought how could I forget that? I've been very sick myself, so I guess that's how.

Friday, February 8, 2013

Rescue drug didn't work

Today was a horrible day. The kids had a snow day. Andy doesn't normally have school on Fridays. This means it will be a bad day usually. Andy had a low appetite and was having hard stools. He cried a lot through the day. I put him down for a nap. He woke up a mess, I gave him the rescue drug Klompin. He got more irritated and cried more. I called my mom and told her I could no longer take Andy's crying and I needed to bring him over. I called the neurology office. They were concerned he might be in pain. They told me of respite care and that I can't do this alone. Andy's primary doctor was out of the office. I went to take Andy to urgent care but it was packed. I took him home and put him to bed. 6:30pm. I'm hoping he will stay crashed for the night. I am still crying. My daughter heard me telling my sister that I hate being his mother. She told me "I'm sorry Andy makes you feel that way. I hope you feel better tomorrow. I'm so sad. I'm still waiting for my rescue.

Liebster Award nominations

I had three bloggers nominate me for a Liebster Award. The A Boy Named Silas blog, the Out One Ear blog, and the I Can Say Mama blog . Thank you! Now I have some questions to answer. 

Questions from "A Boy Named Silas":

1. Think of the day your child received his or her diagnosis. What is the first word that comes to mind?  Damn it

2. Who is your favorite doctor, specialist, or therapist for your child and why?  Andy's Neurologist, Dr. Harry Chugani, has made me feel like I deserve a break from Andy's crazy temper tantrums and has been the only one to offer a drug that brings him down a few notches.

3. What symptom of your child's disability breaks your heart the most? That he can't communicate with me, he can't tell me how he feels or what he wants.

4. What symptom of your child's disability is actually somewhat endearing? How he shows love, by putting his arm over his ear with a fist, and cooing at us very excitedly.

5. What is something your child is REALLY good at? Crying and making messes

6. In three words, describe how you have changed after becoming a special-needs parent. No I anymore.

7. How has having a special-needs child impacted your spiritual life? It's brought me back to prayer.

8. Would you take away your child's disability if you could? Why or why not? Hell yes. This has been such a nightmare.

9. What is the most disrespectful thing anyone has ever said to you or your child?  "I thought you said your kid was three, the toys you are buying are like for a six month old".

10. "One thing I wish more people realized about my child is ..." That he is disabled.

11. If you were to articulate all the wishes you have for your child, what would they be? That he could have all the abilities that every kid is given just by being born. 

Questions from "Out One Ear":

1. What is your favorite travel destination and why?  I really enjoyed the cruise we went on for our honeymoon. Stopping at the Cayman Islands was a favorite. The Seven Mile Beach was so pretty with its white sands. The huge cruise ship was fun to explore, and I loved being taken to the different destinations. 

2. Do you own any pets? If so, what kinds? My black lab Sady, lived to be ten. My black and white kitty, Whitney, lived to be 16. And my calico cat, Mittens, lived to be ten. They are all in heaven now, and we don't currently have any pets. I had endless cats as a kid as well and a Beagle named Sam.

3. Rain, sunshine, snow, or cloudy? Sunshine please. It helps raise my spirits.

4. The mountains or the beach? The Beach. Andy loves playing in the water. It is a way to get out of the house and have fun.

5. How do you motivate yourself to exercise? By listening to Lady Gaga.

6. Did you make a New Year’s resolution? Share if you like. To try to be the mother my kids need me to be, and the wife my husband needs.

7. Who is your bestest (yes, bestest is a word in my world) Valentine? My husband Kevin.

8. What was your favorite all-time Valentine gift? Massage gift certificates.

9. How far in advance do you plan a vacation? Several months, although I'd rather go spur-of-the moment.
10. What is your dream car? Something convertible from the Jaguar line.

11. If you could move to any other city in the world, where would it be?2Somewhere on Maui/ the Islands of Hawaii.

Questions from "I Can Say Mama":

1. What household task do you hate the most? Cleaning toilets
2. Which positive event or situation from your childhood do you remember the most? Girl Scouts
3. If you had a time machine to go back in time, would you change anything in your life? What would it be? I can't think of anything to change.
4. Do you do any sports? I enjoy ice skating
5. Which famous person would you choose to have dinner with? Lady Gaga
6. Name three things (not persons!) you cannot live without. Music, Love, and Humor
7. Something you would love to be able to do but never learnt or are not talented enough for? Playing the piano or guitar
8. What is your most favourite song of all times? 
9. What would you do if you won 1 million Dollars in the lottery? My husband could quit his job and we could travel more
10. Your favourite meal? Cheese Ravioli
11. What do you see when you look out of the window right now? Beautiful Golden tall grass

Here are eleven random things about myself and Andy:

1. I don't mind watching Andy's favorite show, "Yo, Gabba Gabba" and I enjoy the songs.

2. I'm a Lady Gaga fan, and have seen her in concert twice.

3. Listening to the Black Eyed Peas CD "The END" calms Andy down more than anything else.

4. I wish I could have more normal children, but I'm afraid to have any more.

5. Meeting my husband was the best thing that ever happened to me.

6. Being a mom was my dream job in life.

7. I really enjoyed writing long papers in college, and loved going to school.

8. Andy loves watching children play.

9. Even though the kids can be quite a pain, I really miss them when they aren't around.

10. Depeche Mode is my all time favorite band. R.E.M is a close second.

11.  I like planning and organizing events.

Here are my questions for the nominees:

1. What is your favorite thing to do in the summer?
2. What was the worst job or least enjoyable job you've had?
3. What is your favorite television show?
4. What is your favorite movie?
5. What are your pet peeves?
6. What are your guilty pleasures?
7. Where do you like to travel to?
8. What do you like to do with your free time if you get any?
9. What do you do for fun when you are able to?
10. What kinds of music do you like most?
11. Who is your favorite actor and actress?

I would like to nominate these bloggers:

Marie Clare at Peaks and Valleys
Jessica at Thomas Marshall Does it All

Here are the rules:

Liebster Award Rules

1. You must thank the person who gave you this award 
2. You must display the Liebster heart on your blog 
3. You should nominate 3-5 or 11 (there are different rules out there) up-and-coming blogs with less than 200 subscribers
4. Each person must post 11 things about themselves
5. Answer the questions given to you by the blogger who nominated you
6. Create 11 questions for those you nominate to answer
7. Notify your nominees and provide a link back to your post.
8. Don't give the award back to the blog that gave it to you.

Thursday, January 31, 2013

Trying to connect with Andy

I've been trying to see lately what Andy is able to reciprocate back to me communication wise. His speech therapist at school has noticed that he is indicating clear choices by touching things with his hand. I am seeing the same.

While eating lunch today, I had his water cup with straw, and two food items in front of him. Sometimes, when he was ready for the next bite, he would touch reach the food item he wanted. Or touch the fork sitting on the plate. Andy is unable to coordinate a utensil to his mouth yet, or to pick up a food and put it in his mouth with his fingers. Other times, I would ask him "which one do you want, this one or that one?" and he would then touch the plate he wanted. So, I'm happy that there is a sort of gesturing communication going on.

When I brush Andy's teeth, I ask him to say "ahhh" and open his mouth. I open my mouth while saying "ahh", and he thinks this is funny. Then, he will let out an "ahh", and I feel so happy! He seems to be imitating me, and understanding me!

After waking, he was babbling for about ten minutes, then started babbling mama. So, I raced up the stairs calling out, "You're calling mama, I'm coming, I'm coming, I heard you calling me!" I also told him, "I'm so happy you're talking to me!" I hope he likes how proud we are, and wants to show us more.

Monday, January 28, 2013

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"!

Saturday, January 26, 2013

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.

Sunday, January 13, 2013

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.

Thursday, January 3, 2013

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.

Tuesday, January 1, 2013

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.