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 just became a registered nurse, and my ten-year-old son is infant-like, has frequent meltdowns, and cannot stand without support. He is missing a piece of DNA (chromosome 9q22.2) but we are unsure if it made him disabled. He has a diagnosis of severely multiply impaired, paucity of white brain matter, partial agenesis of the corpus callosum, microcephaly, deformities of the ankle and foot, and Autism.
Wednesday, February 27, 2013
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.
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.
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.
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.
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.
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