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 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.

Thursday, April 20, 2017

Andy is off of daily Miralax (propylene glycol)

Andy used to take Miralax every day for years. His constipation was so bad, without it he would not be able to have a bowel movement. He would get a full cap a day, and sometimes less based on how his stools looked.

I recently met with a new pediatrician for Andy, and she recommended that he come off of this, and only use it occasionally. We started trying to feed him a daily apple, or apple juice, and a probiotic for kids. He doesn't like apple juice, so he will not drink this very well for us, but he eats the apple pretty well.

We felt confident enough to take him off of the stool softener completely, and now just use the kids chewable probiotic (refrigerated only), and apples and juice. Sometimes we kick the probiotic up to twice a day if he seems constipated. The doctor wants us to avoid enemas, and only use them as a very last resort after trying everything else.

When he is constipated for several days, sometimes we give him Miralax twice a day again, but only for a day or so. The doctor doesn't want Andy relying on this for producing stools, and honestly, he was building a tolerance to it. The dose had to keep increasing in order for it to work.

We seem to be successfully managing his constipation naturally, and it is a good feeling. I personally like to buy the refrigerated probiotics, because I use them myself. The ones on the shelf at room temperature don't seem to work as well, but this is just my opinion. Another doctor, who is more homeopathic, told me they felt this way as well. In order to find the refrigerated ones, you have to go to a health food store, like Better Health, or the Vitamin Shoppe. I don't get the super expensive ones, mine are usually around $14.

Sunday, January 8, 2017

We had the baby

I went into triage five days before the c section was scheduled due to some left side pain I was feeling all night long. The pain was right along my previous c section scar, and made me worry that it was thinning out or tearing. The doctors decided to perform that c section that day, which was my third, with the most rocky recovery yet. We were discharged from the hospital late in the evening on Christmas Eve, so we were able to be with Andy and our oldest daughter for Christmas morning.

Andy doesn't like the baby, because she makes unpredictable noises. I've been keeping her upstairs mostly, while Andy is downstairs with my husband. I wasn't able to get upstairs though for about 4 days after we came home. My incisions had to heal up a bit before I could attempt to climb the stairs. Every time I needed to get up and down from the bed or chair, toilet, etc. my husband had to kind of bear hug me and help me to stand. Even now, two weeks later, doing the stairs makes my surgery site hurt and I have to walk around really slowly. I am very lucky that Kevin has had these last two weeks off of work, and my mother-in-law and mother have been able to help us when we need things, or have to get the baby to her appointments. I still haven't attempted driving yet, because I feel I still need to heal up. My recovery has been really slow this time.

Fortunately, our baby has been really good. She only cries when she needs a new diaper, or is hungry. She's been pretty great, so we've been lucky there. My older daughter really loves her as well, and it's been a nice bonding experience for all of us.

We got Andy some wireless bluetooth headphones with noise cancellation that we hook up to an old iPhone. He has a playlist of pop music on it that helps him calm down when he gets mad. If the baby starts to cry or grunt, or gets vocal, we put the headphones on Andy, and it stops the meltdown from happening. But lately, we've just been keeping them on different floors and that's been much easier for everyone.

Friday, November 25, 2016

Preparation for Thanksgiving break and the new baby

I am 35 weeks pregnant now, and I have slowed way down. Being pregnant at almost 40 has been very different than pregnant at 30. My blood pressure has been running very low, which requires me consuming at least 150 ounces of water a day, so that I don't feel light headed. I also take extra Iron due to anemia, which has it's own issues. I haven't been lifting Andy for a couple of months. I feel like it is too much of a strain to lift him now as he is almost 50 pounds.

Every day I try not to overdo it, but I always feel the need to clean and organize things, while the kids are at school. I get worn out fast and easily in this pregnancy. Knowing that Andy would be off of school for the next 5 days due to Thanksgiving break, I started to panic and wanted to get everything vacuumed before he came home from school. Andy hates hearing the vacuum cleaner, and if he hears it he is set off into a one hour meltdown of crying.

The same thing goes for using a blender or mixer. Andy gets set off by these noises. So, I quickly made three different kinds of cookie dough for the holiday with my mixer before he came home from school. All while being sick with a sinus infection. I just keep chugging along and trying to make sure I am getting all the rest I need for the baby.

Andy having time off from school is very tough, because he gets bored easily, and will start crying and become inconsolable. We always dread the summer vacations and the two week breaks. They are really hard for our family. On a better note, things have been going well with my daughter. She is so excited about our new daughter on the way. She has bonded with me again, and tells me that the baby will help bring us girls together. We can all bond and be close is what she feels. I really hope things go well, and I'm not torn from her like I was with Andy being so overwhelming.

We know that our lives are going to be completely rocked by this new baby, but I feel like my head is in a good place. I've done all kinds of prep for the arrival and I've tried to get myself psyched up for the challenges ahead with the baby coming into the home. The baby is due right at Christmas time, so I am trying to get all my shopping wrapped up right now, while I'm still mobile.

Monday, November 7, 2016

Rough patches from constipation and boredom

Lately when Andy is at home, he has a rough time on most days at least once a day. If he becomes bored or is uncomfortable due to constipation, he has meltdowns. We try our best to soothe him with music, television, and cuddling with him. We sometimes try a change of scenery and go for a ride in the car.

I am now eight months pregnant. I've been trying to avoid lifting Andy, and have my husband do it. It is difficult to lift him now that he is 48 pounds and I am quite big. I am worried about when I will be able to lift him again after the c-section surgery. I will probably be afraid to try to pick him up for quite a while, because I have been out of practice with it for a couple months.

Bringing a new baby into the house will be quite challenging. I hope we can survive it, and the baby doesn't have any issues of her own. Seven more weeks to go!

Friday, October 7, 2016

Rough transitions after school

The first three weeks of school consisted of Andy getting used to long days again. He loves school, but he was very tired when he got home, and would get to bed early. The next two weeks after, he would cry as soon as we got home from school, and would be hard to console. I tried to do everything, including giving him Tylenol, in case of a headache, toothache, leg pain, etc. He just seemed to be in a funk as soon as I started to walk him into the house for about the first two weeks of school starting. Andy seems to be better adjusted now.