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, after years of complaining to OBGYNs of my constant yeast infections. I have to take Diflucan once a week or else I will get a bad yeast infection. I have been doing this for 8 months or so. My last OBGYN told me to go see an internal medicine doctor to try and get answers about the constant yeast infections. A blood test was done on my immunoglobulin levels. The test revealed that my IgA is almost gone, its below 5.

When I read about the symptoms of IgA deficiency, it's all true for me. I have constant infections of the mucosal areas of my body, resulting in constant sinus and vaginal yeast infections. As it stands now, the infectious disease doctor wants to redraw my blood in 6 months. He will check it 2 to 3 more times before moving forward with any treatment. He wants to be sure that this isn't a one time dip in my immunoglobulin level.

I'm not sure if I would pursue treatment either. It would involve receiving blood products, which is risky in itself. There is a risk of an allergic reaction to the IgA in the blood, since I don't have any now. It is unsure if my body has now made antibodies against it, and if I would reject and try to fight the new blood product. The doctor suggested having me try to increase my intake of vitamin A and D, but I already take a big multivitamin every day. The doctor did not feel that collostrum supplement pills would help.

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 was crying so hard in his office. I always start crying when I talk about how stressful it is to care for Andy. School will be over soon, so maybe this will help my levels to rise back up.

Monday, November 19, 2018

Developmental Disabilities Research study for ages 5-7

Oregon State University is conducting a research study on children with Developmental Disabilities who are ages 5- 7 years and 11months old. Please click on the link below to participate.

NEEDED: Parents/caregivers of young children with developmental disabilities! 

Complete a survey to help improve our understanding of parental influence on physical activity and motor skills of young children with developmental disabilities.

To participate in this study, you should:
·     Be a parent/caregiver of a young child (5 years and 7 years 11 months) with a developmental disability 
·      An example of developmental disability includes, but is not limited to autism spectrum disorders, intellectual disabilities, cerebral palsy, visual impairments, attention-deficit hyperactivity disorder, hearing loss and developmental delay
Participation in this study involves:
·      Completing an online survey, which takes approximately 13 – 18 minutes. 

Thanks for your help! 

Tuesday, October 2, 2018

ABA and PT

Andy is very busy, going to ABA therapy 3-4 times a week, and physical therapy twice a week. He and I are both getting a bit worn out from all the running around. He becomes very fatigued and takes naps at school and sometimes at ABA therapy for 30 minutes. I'm not sure if I need to cut back a bit, or continue this schedule. He goes to school as well five days a week.

I'm in nursing school also, so pretty soon my schedule won't allow me to keep all these appointments. Andy seems to be eating better with a fork since ABA, and is also sometimes trying to say words. He seems to be trying to gesture to things a small amount more also.

Saturday, September 1, 2018

Taylor Swift Reputation Tour 2018 Review

I am always looking for things to do with my daughter to lighten up the burdens of raising Andy. We are often so isolated from our family and friends due to his outbursts and behaviors that we get left out of a lot. However, we got together with my daughter's best friend and decided to pay for some great seats near a side stage, and it was SO worth it!

First of all, I would recommend that anyone pay a little bit more to get a good seat. It was so awesome when Taylor Swift came back to the small stages to perform! She was right in front of us! My daughter was pretty upset that she didn't get to give Taylor a high five, but she was just a few feet away, it was quite amazing.

We saw the Detroit show at Ford Field. The whole show was top notch. I would see her again, and pay for a pricey seat AGAIN. It is amazing that my daughter and I can share a musical interest like this. My daughter, who is 11, said "I've been listening to Taylor since I was born", and she has! I started liking country music at 18, and was excited when Taylor came onto the scene. It has been wonderful watching her evolve, and she seems like such a wonderful young woman.

She gave a moment of silence for Aretha Franklin, which was so great. Aretha's funeral was actually just a few miles away from Ford Field at the African American Museum on the same night as the concert. The acts preceding Taylor were awesome as well. This show is well worth attending!

What time does Taylor Swift go on stage? About 8:45. After you hear Joan Jett's "Bad Reputation" song. Charli XCX  goes on right at 7:00pm, and about Camila Cabello about 7:45. It was great to hear "Havana", and "Fancy", and Iconopops "I Don't care".

How long is the show? Taylor sang for two full hours, from about 8:45-10:45.

What songs does Taylor Swift sing? The songs were roughly, Ready for it? Bad Blood, Delicate, Blank space, Style, Love Story, Gorgeous, King of my Heart, Getaway Car, Look what you made me do, Shake it off, Dancing with our hands tied, End Game, This is why we can't have nice things, Don't blame me, Dress, and We are never ever getting back together

I tried wearing my purple wig for a bit, but we didn't get picked to meet Taylor. Maybe some day! We loved the show anyway, and had a great time! I also liked how it was a PG show, there wasn't any foul language or swearing. This is such a well-done concert and amazing experience, you will really enjoy this show!