Wednesday, July 11, 2018

Respite Home for one night for Andy

I dropped Andy off at the respite home, and didn't cry this time as I was driving away. The staff there are getting to know him. They know that he likes to be driven around, and listen to pop music. They know that he likes to play with bead toys, and he seems to be more comfortable with them. 

I dropped him off in the morning, and picked him up a little over 24 hours later. I told him "You're going to be sleeping at this house tonight, and I'll come get you tomorrow. " After I dropped Andy off, I went back home and my husband and I, and the girls got in the car to drive to a waterpark hotel. We had fun, but the 18-month old was exhausting. My older daughter had a great time. We ate at a cafeteria buffet with no wait time for our meal, so that worked out great for us. The baby slept just fine in her temporary crib in the hotel room, and even took a nap in there because the room could be darkened. 

We left the hotel the next day, I took everyone home, and immediately left to pick up Andy. He seemed happy when I picked him up. He was watching TV with his earmuffs on at one pickup, and the last one he was sitting by the window looking outside when I picked him up. He was happy in the car all the way home, and most of the day once we got back. 

The respite home has been a great resource for us so far. I do still want to attempt a couple nights away with Andy, but they are usually stressful. We will be taking him up North and to our camper for the day and we will see how that goes. 

Thursday, July 5, 2018

Using a respite home occasionally

Things have been tough as usual. Andy was having half days at school, but that is over now. I've been trying to get Andy into ABA, but it isn't looking very promising. The company advertises weekend and evening hours, but I've been trying to get Andy in there for two months now. They are telling me they hope to have him being seen by the three month mark. Summer is here, and Andy needs some structured activities to do. Otherwise, he gets bored, and has meltdowns.

We found out about a respite home a few years ago, from one of Andy's social workers. I was reluctant to give it a chance. I was worried about how Andy would do there, and didn't want to have him stay overnight somewhere. Recently, I've had a change of heart.

We called them to get started, and to just check it out. The first step was taking Andy in to eat lunch there, so they could meet him and see his demeanor. He did okay. He was a bit whiney there, and we played music for him to help him calm down. A couple weeks later, the next step was for them to pick him up from school in a handicapped van, and take him to the home to spend the night. In the morning, they returned him to school. This was a trial to see how he would do. They said he was okay to begin spending some additional nights there. We signed up for additional dates for respite time.

Andy will probably only go there 3-4 times a year, as there are lots of other families that use these services for vacations without their impaired child. Sometimes, he only needs to go there for 24 hours. This is enough time for us to drive to a hotel and check in there, and pick him up the next day. It has been an awesome resource for us to be able to spend time with our other children. It provides relief, but at the same time, we worry about Andy when he is there. I call to check on him, and usually feel better when I find that he is doing well. I also feel better when I pick Andy up, and he is happy and doing fine.

Saturday, May 5, 2018

Nebulizer for Andy

We are trying a nebulizer for Andy. He is sometimes demonstrating trying to take extra breaths for about ten minutes. He does not exert himself, he doesn't move around much at all. He can't stand or get up. I brought him into the doctor to discuss the issue, and we are going to try a daily breathing treatment for a month. If things aren't better, he will see a pulmonologist next.

We are still having a trying time with Andy at home. He does well at school, and other agencies. That's what they tell us. He gets very bored here at home and melts down. Since it's been really hard on everyone, I am taking extra steps to have Andy looked after, so that we can do some activities without him.

I've also found an ABA center that offers weekend hours. We are waiting for someone to be available to start seeing Andy. This will work on his behaviors, and also provide us with more respite time.

We are building the new house right now, so soon we will have to find time to get it ready for move in. I'm trying to finish up nursing school for this year, and then I will get a school break.

The baby likes to play with Andy, so this has been great. They have to be watched carefully, but he is sometimes entertained by her for a short while.

Sunday, April 8, 2018

Our spring break was hell

Our spring break is an awful hell. A hell of hearing Andy cry and scream and meltdown all day long. It's grueling and gut-wrenching when he's out of school. I don't know what to do with him, I try to plan ahead and I don't have anywhere for him to go.

Luckily, my older daughter got to get a way for a few days with my sister. I am very thankful for that. We try to keep Andy happy, but can't drop everything to take him on car rides or even figure out why he's mad.

Andy was flipping out all Easter long. He was nuts, and I thought he'd be better when we got him out of the house. When we got to our Easter destination, Andy screamed for fifteen minutes straight once we got inside, and I asked my husband to please take him home. My little one also started crying inconsolably an hour later and did not stop until he came back to pick us up 45 minutes later.

I am studying for multiple exams for school, and my Dad just passed away. We had his funeral, and his burial is in a few days. Everything is so stressful. I feel like I'm on the edge of a breakdown all the time. I'm just on the edge of the fence. I've told my husband, I think he feels the same.

My body got out of control on Saturday. It was my husband's birthday. Company was over, and I had a headache all morning. I slammed two glasses of water, thinking maybe I just needed more water. After we ate, I go to our bathroom and tell my husband my head is killing me. I take two Tylenol and now I'm super nauseous. He stays with me and it is the most intense horrific migraine I've ever had in my life. My whole face was aching. I couldn't get away from the pain.

I started vomiting and everything came up. It was just too much. Everything was just too much. We are caring for Andy, and having to do all the other things we are obligated to do and it is affecting us. Yesterday was an eye opener for me. This is just too much and I have to actively start searching for breaks for our family. At all costs.

Friday, February 23, 2018

Andy and baby are doing a bit better

Andy is tolerating the baby's noises, and having her around him much better. Don't get me wrong, there are still times when he has a huge meltdown because she let out a squeal. But the fact that she can be around him part of the time is huge for us. He was watching her standing up yesterday, and he was smiling at her. Almost like he was showing that he's happy she can stand up on her own now.

A lot of times, the baby likes to crawl right over Andy, and try to take his toys away. When she does this though, Andy can here us correcting her, and he knows we are trying to teach her not to do this. He's very tolerant when she comes at him, and I am thankful for this also. The baby is also starting to get jealous when she sees us offering Andy his cup of water for a drink. She starts crying and saying "no, no, no".

We were so frightened when we started this new journey of raising a baby with Andy to care for as well. We are so thankful to have her, and thankful that it has been enjoyable, and Andy has been doing okay for the most part. We are hoping they will soon be great friends, and the baby will want to help care for him and continue to be a wonderful part of the family.

Monday, January 15, 2018

Another school break

We are on yet another school break today, so it's been a long weekend for Andy without school. He made it through lunch time today, and then started melting down. He seems bored, but was also not happy with the baby crying.

I don't have school today either. That's my getaway from all this. My husband is trying to work from home, and ignore all the screaming and crying from the house. Believe me, I want to cry too. The thing is, Andy needs to get out of the house. We don't need someone to come over and be with him, he needs to be taken out and entertained. I can't do that right now with the baby. He loves going swimming, which is really hard, as he's 50 pounds and unhelpful in moving around. My oldest daughter doesn't want to be seen with him either.

We took Andy to an arcade birthday party, and my oldest couldn't stand it, anytime we brought him near her. Get away mom, okay, go somewhere else now. Andy couldn't stay in the karaoke room we were in, because it was too loud for him. He had his music on his headphones, but he was still getting set off here and there.

My husband mostly walked him around the arcade and mall, while I played with the baby and fed her. Then we fed Andy and the baby an early dinner, and he was happy for a bit. He loved the one hour car ride there and back, the baby not so much.

Although the Christmas break was hell with getting sick for almost all of it, I did get to take my oldest daughter to a movie. My husband also took her to two movies during the break. We went to see Jumanji, and it was such a good movie. I laughed so hard a few times, I really enjoyed myself. It was a great night out for us.

Tuesday, January 2, 2018

Andy had a hard time at Christmas, he cried a lot once our house filled with people, and he did the same on the baby's birthday a few days earlier. He was happy to watch tv in his room though, and play with his toys. We have a video monitor that we use to keep an eye on him. He doesn't get into anything, he just plays with his toys and doesn't try to go anywhere. He will only really army crawl a foot or so. It gets hard when he has meltdowns, and his behavior gets out of control. I went into his room and laid with him a few times to get him to calm down.

The holidays always bring illness, so unfortunately, Andy ended up with strep throat from one of our visitors. None of us has it. Luckily, I had a sore throat as well, so when Andy started getting really upset and not eating, my throat pain lead me to check his throat with a light and a tongue depressor. It looked a little red to me, so I called his doctor on a Saturday morning. They were in and we got an appointment. He had a positive rapid strep test, but his pediatrician wouldn't check me. So, I had to drag Andy to urgent care with me, where I was told I did not have strep.

The baby has been self-feeding for months, so I'm trying to get Andy to do the same. He will put toys and cloths in his mouth with no problem, but will not put food in there. I think he feels its our job. I know he sometimes doesn't have the coordination to pick up and drop in, but its been a long time of us feeding him every meal. So, we will continue to work on feeding finger foods and snacks.

Thursday, December 28, 2017

Chest pains from stress

I was having a lot of heart palpitations throughout my last pregnancy. Once the pregnancy was over, I was still experiencing them. I was trying to give my body time to get back to normal, but things seemed to be getting worse. Several EKGs showed an abnormal T wave, and a short PR interval. These can be serious things when paired up with other symptoms like fainting (syncope) and a fast resting heartbeat (tachycardia), which I don't have. I've just been experiencing chest pains with stress that last for one to two minutes. 

I was told by a physician's assistant, and my primary doctor to follow up with a cardiologist. I watched when the pains came for several months, and what brought them on. It was always stress, and not breathing or physical exertion. So these were good signs. 

When I saw the cardiologist, he did an echocardiogram of my heart (ultrasound) and told me things looked good. I do have two leaky valves, he said they just don't close all the way, and that's ok. The doctor told me that I just have a lot on my plate right now, and that my body is giving me chest pains. He asked if my neck had been tense. It has been very tense and I can feel knots in it. He told me that sometimes the neck tightness can cut off blood circulation to the heart and cause me pain. He said some people get headaches due to stress, some get bowel problems, and I'm getting chest pains. 

Anyone that has chest pain should be evaluated by a doctor, but I thought I would share what happened to me to help give info to others that may be experiencing this. Signs and symptoms that should not be ignored are, difficulty breathing, shortness of breath, fainting, chest pain that does not go away after a few minutes. If this happens to me or anyone else, we must go to the hospital emergency room. The doctor felt I was a bit young to have cardiovascular disease at this time. He didn't see any plaques/clogs on my echo, so he felt it was probably just stress. 

Red tape from agencies that are supposed to help

We can hire someone to help with Andy, but they have to go through four different training classes that can take months, with the dates and times they are available. Andy's grandmother did the classes, and it took several months. After she was done, the agency kept telling me they lost her paperwork, they didn't know who she was, they didn't have her direct deposit forms, after I had mailed them out several times. I eventually had to send them electronically, which I was trying to avoid, because we've had our identities stolen recently. We are trying to be careful, but this agency made it impossible to do so. Once Andy's grandmother was watching him, it still took months for her to get paid, due to all the constant red tape.

Do we want to go through this again with someone else? No. No one wants to come along from an ad and be told to do all this training, and then I'd have to hide the fact that the agency keeps losing their paperwork, and it would just be such a mess. We feel like even though there is "help" out there for us, we really can't access it. We haven't really coordinated for Andy's grandma to watch him either, because she is already watching the baby for us. Things have just been a lot for us lately, and it's been tough.

Sunday, December 10, 2017

Trying to find ways to de-stress

Andy and the baby have been going to bed early, so it gives me time to study, or we can try to do something fun. Last night, I told my husband to take our ten-year old daughter Gabby out to a movie. It was a 8:30pm show, and they were home by 10:30pm. I was studying for my final exam kid-free, so it was nice. I also watched an episode of Grey's Anatomy, which was nice. I have a lot of shows to watch that have been recorded. 

I'm also trying to exercise on our stationary bike in the basement if I can, a few times a week. I've been having trouble with heart palpitations that come on with anxiety, and not getting enough sleep or water. I've read that it is common to start having heart arrythmias/ heart rhythm issues after the age of 40. I also know we've had 8 long years of chronic stress with all of our worries about Andy, so I wonder if the two could be related. I never exercise anymore, due to lack of time. I stay in shape due to a fast metabolism/ genetic reasons, but I do need to get my heart rate up more often in a healthy way.