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.

Monday, November 20, 2017

Andy and the baby


Sometimes, Andy is okay with the baby playing with his toys. We have to watch that he doesn't reach out and grab her and squeeze her. He likes to do this to people or objects. He reaches out and starts squeezing really hard. If the baby starts squealing, Andy will not tolerate this. He will have an immediate meltdown. He just had one in the kitchen. I was trying to feed him dinner, and she walked up in her walker. She only made a few small noises, but he lost it. My husband was able to calm him, but I think it took ten full minutes. He had immediate tears falling from his eyes, and he was trying to wipe them away, while fully screaming. We took the baby to a different room to play.

Andy always wants the toy that the baby is playing with. It's nice to see them playing together. The baby cries sometimes now when Andy makes his high-pitched squealing noises. When she gets upset, we take her to a different room. She is trying to figure him out. They both smile at each other, but they can both also upset each other pretty quickly too.

Thanksgiving break ahead


Andy's been enjoying school, but Thanksgiving break is just ahead. He will have three days off of school, including the weekend, it's five days of no school. This is usually pretty tough for Andy. He gets pretty bored with staying home all day. We don't take him out, due to meltdowns in public, and where to change his diapers? We might take him up north for a couple of nights to break up the monotony of being home for several days with no school. I hope it helps.

It's been tough to study for exams, and care for the baby. My husband does most of the caring for Andy lately. I feed him and play with him too, but most of the heavy lifting has been done by my husband. He is also working hard on doing everything that needs to be done for the new handicapped-accessible house build. There are a lot of details that have to be figured out.

I'm also hoping we can be free of viruses this Thanksgiving. It seems someone is always sick during the holidays. We've been trying to take extra vitamin C, and I'm using fish oil to help my memory. I am also going to start giving Andy more kids health supplements as well. He puts everything in his mouth, so this makes him more susceptible to illnesses.

Friday, November 3, 2017

Having Andy chew on the babies receiving blankets

We are trying to have Andy not chew on his shirts and use the babies receiving blankets instead. We ask him not to chew on his shirts, and don't put the bibs around his neck anymore. The bibs on his neck, just promote him chewing his clothing, and they get his shirt soaking wet underneath. Since we are using burp cloths less and less for the baby now, we are letting Andy have them. He was keeping himself busy with a cloth while we were closing up our camper for the winter.

We are building a handicapped accessible ranch house

We are building a new house that will be completely handicapped accessible for Andy. There will be a handicapped ramp on the front of the house. There will be wider hallways and doorways. Andy's bathroom will be like a wet room with a roll in shower and tub next to it. We will have an open concept kitchen and living room, and a playroom/office over to the side. We are building a garage big enough and tall enough to hold a tall full sized handicapped accessible van, plus other cars.

We've been picking out building materials, and I've also been trying to organize and consolidate things here at home, and study when I can. It's been busy. I'm definitely worn out.


Wednesday, October 18, 2017

Hard to get out with Andy

We tried to take Andy and the baby to a party that started at 6pm, knowing that they both go to bed at 7:30pm. It was a bad idea from the start. We had no sitter available, so we decided to all go. It was raining, everything was soaking wet. Someone was blocking the driveway, and there was no where to park. We would have had to park about 20 houses away, so my husband dropped me at the curb with the baby to walk across the soaking wet grass, because someone was blocking the drive completely. My husband squealed off away and was so mad. I called him when I got inside. 

"There's no way for me to even get Andy inside the house, I'm not coming in. Just visit for a bit, I'm going to drive him around, and I'll come back to get you." Andy had been having a very bad day all day at home with crying and moaning and whining. He was enjoying the car ride like he always does. Inside the house, it was super crowded. There were about 50-60 people inside a 1200 square foot house. My baby was clinging to me, and tired. It didn't even seem like a remotely good idea to try to drag all 50 pounds of Andy into the house and shoe horn him onto a couch where he would have to sit there with his headphones on and try to play with a toy to stay happy. I called my husband when the baby finished her bottle and said "Let''s go, I'm ready". 

We sometimes feel like prisoners in our own home. We really cannot go out, and if we do, we have to be divided. Someone stays with Andy, someone gets to go out, but they're worried about how he's doing. No one understands what we must go through to go out, and how it often just keeps us home.

I am thrilled beyond belief that I get to go to Nursing school it gives me a huge break, and I am thrilled that Andy gets to attend school and get out of the house. I think the day we tried to go to that party though, it was quite a smack in the face that we are not like everyone else. We don't get to just go out and do what we'd like to do. Everything has to be so calculated for things to work out for us. We can't just take our kids to the beach and let them play while we fall asleep on a blanket. Or leave our kids home while we head out to a bar or party, which is NOT something we want to do, but our friends and family are doing this now that their kids are teens and they have much more freedom. Andy of course, can and will never be left alone, it is just a comparison of what others are doing and we cannot ever fathom doing. It's also causing us to not be invited out to do things either, because people know how difficult it is to do anything. 

Andy's doctor asked me, "How do you guys get out?"  and I started crying and said "We don't." It's too difficult to even begin to find a place to change Andy's diaper, besides taking him back to the van. Even then you have to worry about someone in the public seeing you, or if its freezing outside, it will take five to ten minutes to warm up the car just to be able to lay him down on the seat and change him. His outbursts are the biggest thing to have to worry about and all the stares we will get from others. I know its natural for someone to look when someone is screaming, but the looks we get say "get that kid outta here" and we don't feel comfortable. He needs to get out of the house too, but unfortunately that will just be school, driving him around in the van, and appointments for now. I'll find a way soon to more with him as a family.