Sunday, December 15, 2019

Working outside of the home

I went through nursing school for two years, and I have to say, it was an awesome change of pace for me. I went from full-time mother, to full-time student, and I needed the mental change. It was so difficult, but very worth the lifestyle shift I've had. It's taxing to constantly be worried about Andy and what to do next. There is so much to do, and it is draining. 
I've been out of school now since May, and done with nursing orientation. Working at the hospital is a nice change of pace. There are many draining days, and I am super busy when I am there. I work in a cancer hospital on a bone marrow transplant and hematological cancer floor. The change of focus has been good for my well being. It's nice to leave all the stresses of home, and go to a job. My job isn't easy, it's quite overwhelming. However, I still enjoy doing something other than being a mother as my main job. Besides my new nursing skills, it involves trouble shooting, time management skills, understanding, caring and compassion. My life raising children/and two special needs kids certainly carries over to nursing, but when I'm at my job I pull from my scholarly resources far more often. It was a much needed change, and I am grateful I had the opportunity to grow into a new career.


Friday, November 29, 2019

Not using respite home again

Unfortunately, we no longer feel comfortable sending Andy to the respite home we used to have him stay at several nights a year. The respite home didn't tell us that Andy was attacked by another child until I had to call them after his frantic arrival at school that morning. Andy's teacher called me at 9:30am to say that he was inconsolable. I could hear him screaming and crying in the background. "We've tried to do everything to calm him down, and we also noticed he has injuries on his arm. We saw the van that drops him off in the parking lot at 7:30am. They were just parked there so we think Andy was sitting in the van for 90 minutes".

I immediately felt so ill and nauseated. I had to call the home right away. Why didn't they call me last night to say he had been injured? Did he even eat any breakfast if he was in the van for over two hours with commute time? Maybe he couldn't sleep the night, and was woken up at 6am because they had to drop someone off at a nearby high school first. I know he wouldn't have eaten if woken that early. Was he screaming in the van? When he came out, the school staff said he was escalated and out of control already.





When I called the home, I needed clarification on what happened. They didn't answer the phone, but claimed they were standing there listening to my message. It took them an hour to call me back. They claimed he ate just fine, and never cried in the van. They claimed it was best for them to wake him early and just wait around in the parking lot so they wouldn't have to drive all the way back for him. I know my son, and he doesn't like sitting in a parked car for even 5 minutes. I told them I wished they would have called me when he was injured, I would have come to get him straight away. They said a child jumped on him and by the time "They came into the room and got him off of Andy, the damage had been done".The home defended themselves, and were certain that they did the right thing.

Andy had a large chunk of skin missing from his arm, along with several scratches. When he came home, it took him two hours to calm down. I can't send him anywhere again when he is in such a vulnerable state, where he can't talk to me or defend himself. It is unfortunate for Andy, and I think he must have been terrified after it occurred. It happened in the evening, so I'm not sure how well he slept after that. Not to mention being woken up at 5:30 or 6 am to go sit in a van for two hours. It is also unfortunate for us, because we lost a valuable resource.

Sunday, October 13, 2019

ProLoQuo2go app is half off October 14-16

It is so hard to find this information on line, I've been waiting for this sale. The app is half off October 14th - October 16th, 2019. Regular price is $249.99!

Wednesday, August 28, 2019

I passed the NCLEX exam (state boards) and I'm a Registered Nurse

With three kids it was tough, but I studied for the NCLEX for a couple of months and passed it first try! Now I'm a registered nurse, and doing some job searching. It is taking a long time to hear back from employers (several months on some).

The kids are stressful as a whole, so we are still trying to use the respite home as often as we can. Just last weekend, Andy went to the respite home, while the other two kids stayed with their grandparents. We got away to Mackinaw Island and had a nice night away. We rode a tandem bike around the island, and I begged Kevin to stop and sit on the beach for a few minutes (he was on a mission to get around the island as fast as we could). It was nice to just sit on the beach without having to chase a two year old up and down the shoreline, or worry about Andy getting too hot.

Tuesday, August 13, 2019

New shows for Andy to watch

Andy likes watching Yo Gabba Gabba and Dora the Explorer. He really likes the singing and bright colors. A new show Andy has been watching on Netflix is Little Baby Bum. The episodes are just a bunch of nursery rhymes and he is really enjoying it. I think he gets tired of watching Dora and Gabba sometimes and needs a little change.



Sunday, August 11, 2019

Andy has been melting down easily

Andy has been getting very upset by noises made from his younger sister. She is two and a half and not speaking yet, so she has a lot of outbursts. She yells and gets loud, and it immediately sets off Andy. We have been having his headphones on a lot more lately, they help a lot. Although, when we are in the car and they are sitting right next to each other, he will cry until we reach our destination. They will both be crying almost the whole ride, despite the headphones. I've been trying to minimize the times I have to have them both in the car together, because it gets really awful.

Using the respite home has also been really helpful. Getting a break from the caregiving of Andy has really helped our spirits and energizes me. Having my mother-in-law help with Andy is also very awesome. Having breaks has been really key in keeping us going.

Tuesday, June 11, 2019

I cut Andy's hair

It is so hard taking Andy to get a hair cut. I usually take him to the mall, and he ends up crying and screaming throughout the hair cut. I watch what the hairdressers do each time, and I've watched a couple YouTube videos to help me learn to cut Andy's hair. The first few times weren't the greatest, but this most recent cut came out pretty good. It's a relief not to have to drive all the way to the mall, and deal with all the staring and gut-wrenching crying that he does during the hair cut. It's a huge relief actually!





Thursday, June 6, 2019

It's been hard, I'm not gonna lie

It's been a rough last 6 months. I've been studying like crazy to finish up my nursing program, and now I'm studying for my state boards (NCLEX) exam. We are still taking Andy to ABA twice a week, and to other appointments. Now my daughter is in early on/early intervention for kids under three. There are home visits and school visits with that.


I am thinking to start out working to just start part-time for now. The kids have so many appointments and commitments all over the place, it will take a bit to get it all balanced out.


Andy had his 10th birthday, and we took him swimming. He had a great time. We had to keep the little one separated from him when entering and exiting the pool. She was having meltdowns that would have sent Andy into a tailspin. It's always hard work going out with the whole family.


Wednesday, January 16, 2019

Cutting stress down using respite care

I am trying very hard to schedule recreational time, and I am making it a priority. I'm in a rut of feeling powerless and helpless with my constant infections, and our family trying to care for Andy and the other kids. A couple weeks ago, we took our two daughters to a waterpark for the night with some friends. It was a really nice break.

I have to admit, I was so sad when I dropped Andy off at the respite home. He started whining as we approached the home. When I took him inside, he started whimpering. One of the workers came out that he is familiar with, but he hasn't been to the home in many months. She started pushing his chair into the kitchen and he cried out like I've never heard him before. He was protesting to me against being there. I felt like I could vomit.
Andy getting familiar with the "new house"
The worker assured me that Andy would be okay, and that it's just been a long time since he had been there. I tried to comfort him, but she reassured me saying "Just go and enjoy yourself".  I mentioned that I'd call in a couple hours. I drove away in tears, and wanted to run back inside and bring him home with me. We were having him stay there for two nights.

I told my husband right when I got home that I might need to pick Andy up in the morning, and take him with us if he was still having a hard time. We both agreed. I called after dinner time, and found that Andy had been too upset to eat dinner, but was calm now. It made me feel horrible. I asked if they could try to feed him some crackers before bed.

I called in the morning to see how Andy was doing. The worker told me that he woke up happy and ate all his breakfast. It made me feel a bit better, but I still questioned leaving him there. I had so many worries, I thought it would be hard to be away. We started out on our drive, and were only going to be a couple hours away. We were really only gone until the next afternoon.

I picked Andy up two hours earlier than I said I would. I called ahead to let them know I was 30 minutes out. I felt bad when I got there, because he was napping on a blanket on the floor, and would now have to be woken up. They told me he needed to play in the room alone, because he was upset. It is also what I do when he is at home with us, and he needs to calm down and be away from everyone.

Now that our handicapped accessible ranch is almost finished, we will be moving in soon. It will be easier to have our parents stay with Andy if we want to go somewhere. He will be more comfortable not having to go to the home, but we will probably still use it on occasion.

I have planned another waterpark night away for the future, but this time, Andy will stay with our parents in our home. We will see how it goes. I think he will do pretty well. We are so fortunate to have supportive parents that help us out, and enable us to have some time away. It is helping cut back on stress, and lessening our feelings of powerlessness to be away from the chaos.


Thursday, December 13, 2018

I have IgA deficiency

I'm not sure if all the stress is causing my drop in Immunoglobulin A, or if it's always been this way. I've been struggling to stay healthy for the last several years. Every time I get a small cold, it always turns into a horrible sinus infection. I've had my current sinus infection for 5 almost 6 weeks. It has been hard to study and focus on school.

I've been on three courses of antibiotics (Cephalosporins and Augmentin two different strengths). I am also currently on anti-fungal suppression therapy for the last 12 months. A blood test was done on my immunoglobulin levels. The test revealed that my IgA is almost gone, its below 5.

The doctor also said that it would be good for me to try and cut my stress in half, but he knows it probably isn't possible. I recently revisited and he wants me to have genetic testing for STAT III deficiency. It could be a genetic reason for my susceptibility to infections. I'll find out more soon.