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.

Monday, September 18, 2017

Andy is chewing holes in his shirts

Andy loves to chew on bibs and his shirts. He is really starting to ruin his shirts by grabbing the collar and chewing on it for as long as he can. He usually requires several shirt changes at school due to soaking his shirts from chewing and drooling. He is tearing up and ruining his bibs and we have to throw them out, because they are disintegrated. He is now ruining shirts at a fast rate. They are getting so filled with holes that we can't have him wear them again. I already have to cut buttons and zippers off of all shirts before he wears them. Otherwise, he will chew the button off and crack it right in half with his teeth. The buttons and zippers also present a choking hazard for him.

I'm having to buy him all new shirts, and looking for stuff on sale and new with the tags at resale shops for cheaper. I also started letting him chew on the baby's receiving blankets, since she has so many. He enjoys holding them and chewing on them, but eventually throws them to the side and forgets they are there. He will then go straight for the collar of his shirt. Sometimes, we are removing his shirt until bed time, when he won't stop chewing on them. We then put his shirt on after he has fallen asleep.

The most frustrating thing of all is that Andy WILL NOT pick up food and put it in his mouth. EVER. Even after years of trying to get him to do it. He just will not. He will put other objects in his mouth though, like blankets and clothing with absolutely no problem. If it is food though, he will not do it. He will pick it up and throw it on the floor, or make a mess with it, but won't pick it up and bring it to his mouth. It's very frustrating.

Friday, September 8, 2017

Andy is happy to be back to school

Andy just LOVES being back in school! Thank God for school! Andy is so happy to walk up to school and see his teachers and friends. Being in school really changes his behavior at home too. He isn't so quick to meltdown, but he still will. He's gotten out of the house, for a change of pace, and we get a break as well. Andy claps and squeals on the way to school and is smiling and happy. It is just so nice to see.






Saturday, September 2, 2017

Summer Blues

So, summer was tough. We didn't have any awesome and exciting vacations. We don't feel we can do that type of stuff with Andy. We feel strapped to the house. I can't really look at Facebook. Seeing everyones photos of their weekends away, and trips to the beach makes me sad. People also don't understand that we CANNOT and do not have the freedom to just do whatever we would like to do like THEY do.

Even having people help us with Andy, we feel we still need to be here. When he gets out of control, we take him up to his room. Or I put him in the van and go for a 30 minute drive.

We tried to keep Andy busy with our mother-in-law, and by me driving him around to places to make him happy. I drive to my mom's and bring him inside, and then the infant, and try to hang there for two hours. Andy plays happily on the floor with toys, but then after two hours of that and a snack, we are ready to head back home.

Overall, Andy hasn't done well on most days. Meaning he is crying and upset and bored. He has a few good hours, and a few bad hours, each and every day. I wanted to plan for a better summer for him, but the baby was here this time around and was very consuming.

Next summer, I'd like to have therapy appointments and things scheduled for him. We are also trying to network more and find out about things for him to do. The problem is that this year we didn't want to put him in any summer camps, because we don't trust people with our completely non-verbal son. We are always concerned about possible abuse, even now there was an incident of a special needs boy being raped at Novi High School last year. He was put into a seclusion room with a 200 pound special needs boy unsupervised and was raped. This kind of stuff paralyzes us with fear of who we can and can't trust with our son. He is basically like a helpless infant.

Friday, September 1, 2017

Back to school

Hurray! Andy will be able to return to school in a few days. He will be so thrilled to be at school with all the kids. He loves it so much. Whenever we take him there, he just sits and watches all the kids, while clapping and squealing. That's when he's truly happy.

Saturday, August 5, 2017

Trying to get through summer with no school for disabled child

Oh how Andy really needs the structure of school again. He gets bored and has meltdowns every day. My mother-in-law has been helping play with Andy during the day, while I take care of the baby, whom is now 7 months old. I sometimes let Andy play with toys in a sink full of water, but of course, it makes a huge mess. All of his clothes get soaked, but he is so happy.

He also loves to drive around in the car, so I will take all three kids driving around to get his meltdowns to stop. The baby doesn't care for being in the car for long though, so I can't win.
Andy is also becoming more difficult for me to lift in and out of the car, so I don't do this every day.

We will soon be needing to purchase a full size van, and have a wheelchair lift added to it. We don't want to make the purchase for a couple years though, so we are trying to make things work with the junky Chrysler town and country mini van.

What a pile of crap that van is. I started out liking it, but things started falling apart with it at only 30-40,000 miles. We'd only had it for 3-4 years when the backup camera stopped working, and the blindspot sensors were toast. The tailgate button doesn't always open the trunk. The rain sensors for the wipers don't really work anymore on the windows. Then the air conditioner just three weeks ago stopped working just in time for summer. I hate this van. It's been the worst vehicle I've owned. I would not recommend anyone buy a Chrysler town and country. Ever.

So, just trying to squeak through this summer with this horrible van, and survive the meltdowns from Andy. He is getting stronger too, and can hurt us easily by punching us. He usually does this when we are carrying him up the stairs. We plan on building a ranch house soon, so that we won't have to carry him anymore. We could just wheel him around in his chair to his bed at night, and if he needs a cool down period in his bed. More on that to come.

Thursday, July 20, 2017

Swallow study

Andy had a swallow study today, because he sometimes breathes in food (aspirates) and gets aspiration pneumonia. It required a prescription for a swallow study, a radiologist and a speech pathologist to be there. It was not an esophagram, that is a different study involving swallowing contrast. This study involved swallowing contrast, drinking water and a few different foods (cookies, crackers, fruit cup, pudding). X-rays were then taken of his throat/esophagus, after he ate or drank the foods. We found out that when Andy takes big gulps of water, the water is "penetrating" outside of his esophagus. We see Andy choke on water here and there, so this made sense. She said if it happens enough in one feeding, then it will lead to aspiration. We were told the other foods were ok, and didn't cause this. No dietary changes will need to be made, but we were told to pace his water drinking.

Friday, May 19, 2017

Andy's 8th Birthday

Andy had a great day at school and home for his birthday. He got a few new pairs of pajamas, iTunes card for his headphones, a ball, and a few toys to put into buckets. We celebrated with pizza, salad, cake and ice cream.

Tonight, Andy is back to uncontrollable crying. He kind of snapped at the end of the night, and we don't know what he needs to calm down. Right now I have mastitis, a breast infection, that makes me feel like I have a bad flu, so it's hard for me to console him. I have the body aches and chills and pain, it's not good. Poor Andy is trying to go to sleep right now, and I feel so helpless on what to do for him.



I'm hoping tomorrow will be a better day, but it's the weekend and he won't have school. When there's no structured routine for him, he can become a bit bored and frustrated. He still enjoys watching Dora the Explorer, and Yo Gabba Gabba. These shows are on all the time for him, and also at our camper. They make him happy. All the music and colorful characters really entertain him. We don't mind the shows either, they're a bit funny and silly.

Andy still mainly plays on the floor when he is at home, but at school they have him at a desk, and different stations. He enjoys it there with all the kids he can watch. He continues to get upset if he hears the baby make any noises, squeals, or crying, but we use his headphones to try and help his meltdowns.



I feel like I've got to say some extra prayers tonight for all
of our health, and for Andy. It's been tough lately and we are just trying to keep our heads above water with everything. Things have been much better between my older daughter and I so that's been great. It just seems our immune systems have been down lately, and Andy has been catching every single germ from school. He's missed a tremendous amount of school this year due to this. He's had several flu's and colds, it's been pretty bad. We try hard to keep his illnesses from the baby too, which is difficult. All I can do is pray for better days to come.

Sunday, May 7, 2017

A Dark Cloud Lifted

A dark cloud has been lifted with the arrival of my new baby. She is everything that I have been aching for, for years. My husband and I always thought, and wanted to have, three or four kids. When Andy was born, our second child, everything came to a halt. When we discovered how severely disabled he was, our dreams of a bigger family shattered abruptly.

We searched for answers for years, as to whether this could happen to another child of ours. It doesn't appear to be genetic. It seems to be a very uncommon thing, if in fact, his disabilities are due to a small snippet of missing DNA.

I was depressed and sad for many years, about not being able to have anymore babies, due to our fears. We couldn't fathom having another child like Andy. It would be complete chaos right? We were not trying to have another child, but my new daughter slipped through the cracks, and she's here.

I have to say, I'm loving it. She's perfect, and so cuddly and sweet. What a joy she is. Everything has changed for the better. I'm taking care of the baby now, and my husband is caring for Andy. I'm so lucky that he can help. It's been a nice break after seven years of all Andy all the time. I really needed this, and I love that my daughter gets to have a sister. How awesome.

I thank God all the time for this baby. What an absolute blessing she is, and she seems to be developing normally. What a huge relief and I am so over the moon to have her, and it is helping to bring my older daughter and I closer together. I am also taking classes, and the new shift in focus is just so great for my well being.

I'm not telling anyone to have a baby to solve issues with having to raise a severely impaired child. For me personally, it was a dream come true, to have another daughter, and also a much needed life shift. I didn't think I'd get the chance to have any other children, and now here I am with a four month old baby. I'm not overwhelmed, I'm overjoyed.




Saturday, April 22, 2017

How to get rid of clogged milk ducts and mastitis issues

This is the third baby I've breast fed, and I've never had so many problems with clogged milk ducts and breast infections (mastitis). With my son, I got mastitis once a month, from six months, up to his tenth month, and then I stopped nursing him. This time, I got mastitis at two weeks, four weeks, twelve weeks, and fourteen weeks.

Honestly, I didn't get a clogged duct, until I started using the milk maid tea. It might just have been a coincidence, however, the next time I used it, I got the clogs again. Then I threw it away. When you get a clogged milk duct, it feels like you have a frozen pea, large marble (or larger) right under the skin. It won't go away without, heat, massage, constant nursing or pumping, and I think daily Lecithin is needed as well.

Lecithin is a supplement that can be bought online, or from health food stores, that is supposed to keep the milk uniform. It keeps the fat from separating from the milk, and makes it an even consistency. When the milk fat separates in the breast, clogs will form, and one of mine even felt like a golf ball size and would NOT go away for three days. I bought the sunflower lecithin, because I think my daughter has a problem with lactose and soy. The other is a lecithin form soybeans. Both work well for people.

I called my OBGYN office, and I was put through to a midwife I had never even seen before. She was very sympathetic.  She wanted me to come in right away and have an ultrasound, and they did a mammogram as well. This was because my mother was recently diagnosed with an aggressive breast cancer, so they wanted to rule this out. She also wrote me up an immediate prescription for Occupational therapy on the breast with ultrasound waves. I made an appointment right away, I would highly recommend asking for it, if you think you have this problem. I had no idea!

The mammogram procedure was horrible, because my right breast was so engorged with several lumpy clogs in it. I brought my pump with me to the office, and was trying to pump out any breast milk I could in the waiting area behind a curtain. I couldn't get a drop out, until my breast was smashed to bits by the mammogram. Then I pumped out three ounces, but the clogs were still there. I was able to pump out a bit more after the ultrasound person had pushed the wand into my breast all over, which hurt too. BUT the clogs were still there.

I took hot baths, hot showers, lots of massage, and took that daily 1200 mg of lecithin, sometimes I added a second pill at night for 2400mg. But I have to warn, two or three in a day, made me feel very sad and depressed, and I  have read of others experiencing this online. I wanted to be very persistent with the massage and kept taking the lecithin, although I felt I was getting nowhere.

I think that the Lecithin works slowly on breaking the clogs down, because I could feel they were reducing in size, but they were still there. One was like a long strip, going from the top of the breast down to the nipple. They were so awful. One night I felt one pop as I was massaging it and using the breast pump, and all this milk came pouring out. By the next day, when I had my OT appointment, I felt like most of the clogs had gone down in size, but I'm glad I still went in.

When I laid flat on the table and put my arm behind my head, I could still feel the clogs were there. She put the ultrasound wand on them, and told me that it was directing a heat at the clogs. She said my body was responding well to breaking them down. After several minutes on each clog, she did a cross friction massage on each clog with two fingers on each hand.

After all this, she demonstrated to me how to massage the lymph nodes in my neck, the lymph nodes in my armpits, and a gross friction massage on my breast using both my whole hands on one breast at a time. She gave me a handout with this link http://pmr.med.umich.edu/bfsp for breast massage for preventing clogged milk ducts. The therapist suggested that I massage the lymph nodes first, then the breast before I pump or breast feed the baby for prevention. If there are clogs, heat should be used first, followed by the massage and breast feeding. I can also return for future visits, if I feel I find clogs that I cannot remove on my own.

I read about people trying to poke at the clogs with needles, but I would not advise this, due to risk for infection and damage to your ducts! I did not try this, and did not feel it was a good idea, even with a "sterilized needle". I was really glad that I stuck with the Lecithin, although I did give up for a day and decided to not take it. But when I noticed the clogs shrinking, I went back to taking it every day. I have been taking it now for four weeks, every day, and I think it is helpful in prevention of the clogs.

One more thing on supplements for raising the milk supply. I don't think there are any miracle cures out there for low milk supply. I tried the fenugreek pills, and also the milk teas, and honestly the teas just my clogs return. The fenugreek gave me loose stools, which are listed on the bottle, and made my baby fussy, gassy and constipated for DAYS. I only took the pills for two days, and then threw them out. There was no increase in my milk supply. I couldn't continue to give these a chance, because of the instant problems I saw. I know they have worked for others, but I think the added hydration will make anyones milk supply go up.

My milk supply dipped with all the infections and clogs. I also tried to cut out night nursing when I kept getting sick, in an attempt to get more sleep. My doctor suggested this. This was VERY BAD for my supply, and it dipped majorly. I went from having a huge surplus, to not having enough milk and having to add formula supplements in. For now, I am drowning myself in water, peeing a lot, and trying to get a nap if I can. I have also returned to night nursing. Night nursing is pumping or feeding the baby at least once between midnight and 6am.  This has brought my milk supply back up to enough for my baby, but I no longer have a big surplus where I am freezing extra milk. The milk that I pump in the night waits in the refrigerator until the baby needs it as a supplement during the day. Any formula I give to my baby makes her spit up, whether it's lactose free or not, so I like to avoid it if I can.

I hope this helps people out there struggling with breastfeeding problems. Just keep taking the Lecithin, it slowly shrinks the clogs, and keep massaging away at them. They will be gone after a few days. When I was searching for info, I really didn't find much online, and had never heard of going to occupational therapy for breast feeding issues. Also, this is my THIRD baby, and this stuff NEVER happened to me with the other two kids. It just goes to show, every time you have a child, the experiences can be so completely different from before.