Lots of journal entries - read what you'd like :)
Supplementation - Hospice has been providing pediasure to supplement Eli's diet. It has been so nice and he has been much happier. I think he gained some weight in just a few weeks. He seems thicker in general. That is so good. He's always had good cheeks as you can see below, but his arms and legs have gotten much skinnier and his height and weight haven't changed much in the last two years. Evan has been enjoying the supplements as well. He calls them "cocah" for chocolate. They really only like the chocolate flavor, they weren't too big of fans of the other kinds.
Look at all the gear Eli takes with him to school!
Eli's Sounds - Today Eli was doing a good job with his sounds. Better than I've heard in a while. He was repeating bu bu for Bus as we waited for it to come pick him up. He kept doing it over and over. He also said pa pa many times and very emphatically while I was feeding him pizza for dinner. On the other hand, Eli has been having a much harder time walking. He really doesn't attempt to walk more than a few steps on his own because he falls over. He can crawl ok, but not well. He falls over when crawling and can't be expected to crawl very far. One of the wheels in his walker seems very stiff so he really couldn't use it today. He can use his walker if there are wide open spaces and no obstacles, but in the house it is getting difficult. He gets stuck and falls over with his walker all the time. So I put him in his wheelchair or stroller and push him around the house, but he gets very whiny and upset if he's not moving.
Entertaining Eli - He's such a patient boy for all he has to endure, but it is getting hard figuring out how to entertain him because he's losing much of his ability to do so many things. He loves human interaction, but he is constantly wiggling or bouncing and it can be a bit exhausting. He pulls hair accidentally and bites, not trying to injure, but just because he has a great urge to mouth and chomp. He is such a sweetheart, but getting him dressed is very tiring. Some things he really likes are human interaction, music, pounding on the piano and being pushed outside. He can entertain himself for short periods of time on a rug with a few toys to grab and move around. Interaction with adults and watching other kids is fun too. Meal time is still a favorite!
Eli Walking - Today Eli did better walking, he still had many sad and whiny periods throughout the day, but he spent a longer amount of time walking in the backyard. I cleaned up the backyard and re-organized the garage so I could put all the toys in the shed. I think obstacles are one of the main problems, so now that it is cleaner, that has helped.
Silly Evan - Evan figured out how to pull off his pants and diaper today while he was on the trampoline and then joyfully told me no "Nu nu" when I said we needed to go get some pants on, the little rascal. I was so frustrated with my curious little monkey yesterday that I ordered a bunch of child proofing locks for our drawers and oven. I've had it up to here with him getting into everything. It's constant. It's not easy Evan-proofing the entire house and everything in it. We keep a lot of doors closed as a general rule and have put locks on most cabinets, but if there is a chair around, he is moving it or climbing on it to get something. I have to watch him at every moment and if I can't watch him for whatever reason, I will usually put him in Eli's room which is the toy room and put a show on for him. He doesn't watch much but it helps keep him entertained. He will last in the toy room for about 20-30 minutes before he whines to get out. I have a door handle on the inside door so he can't escape or he'd be out in a minute! I don't do that with Eli much because he doesn't really play with toys, but today, I found some cute nursery rhymes online and he watched them in his wheelchair for a little while. That was nice.
Evan is totally into putting things on his head. He actually loves to wear his helmet! He found Laya's headband and put it on himself. He gave me the best smile while he was wearing it. Unfortunately, I didn't catch it with my camera.
Here Evan found Laya's hat and put it on all by himself. I was surprised he could do that. He was so cute. Of course messy too! And we are remodeling our kitchen, so that's there!
Hugs - By the way, Evan and Eli give the best hugs, they squeeze so tight! One of Evan's nursery leaders at church said that he was bouncing Evan on his knee and playing with him and then all of a sudden he stopped and gave him the best hug ever. How cute is that!
Laya - 2nd grade can be long for Laya sometimes and I think she acts silly around her friends, so when she gets home it is not always pretty. Laya was in a bad mood today after school and stayed that way for a while. But after finally finishing her homework, she was happier. We then had a great time snuggling together reading "Little Woman" in her bedroom. I love that book and she has really enjoyed reading and asking me questions about it. This is the first time she's read a "classic". It comes from a different time, I like the values it teaches. She loves reading together each night and I cherish it as well.
Evan in the car - I drove to the library with Evan today. While I drove I listened to my book series on European history. I got the lecture series on CD from the Library. I thought it would be good if I could educate myself while driving and use my brain a little, so it doesn't turn to mush! Evan just sat there quietly sucking on his pacifier the whole time. We then stopped by the post office and Evan was surprisingly well behaved in the store. He didn't pull anything off the shelves, then he went behind the counter and visited the owner, who was really nice and patient with him. Later in the afternoon, Evan was obsessed with pulling stuff out of all my cabinets again, but we got through it. Only one candle broke today!
Eli's walking - Eli walked around the house with his walker for about 30 minutes today. That was really good. He fell down a lot, but I watched out for him and he just kept going. He spit up twice noticeably and then a few more times, a small amount.
Eli and Music - I thought about this earlier today and I wanted to make sure I wrote it down. Eli was so funny on the way to Utah. We had been driving for a while and he became so sad. He began crying, whining, and his volume kept increasing. I couldn't get him to stop, nothing was helping. Well I'm sure getting out of the car and not driving anymore would have helped...but. I thought maybe music will help, so I turned on some church music, songs about Jesus and kids music and instantly, he stopped crying. A smile crept up on his lips and he stopped moving. Then he started bouncing and smiling to the music and didn't cry or whine for probably about 30 minutes. The whole family loved the music as well and it changed the whole mood in the car. After that, he began to get upset again, but we were getting ready for another stop, so it was ok.
1 / 11 / 15
I have been sick for awhile now. I have a cough, sore throat, and a runny nose and it's been that way for months. I think it's just allergies, since it seems to come and go and be worse certain days. But it's really not that bad, it's just kind of annoying, although I'm grateful I can function just fine. Brad is still sick this week, he has the same symptoms I do. Evan has been sick for months with a runny nose and seemingly sore throat at times during the night. Eli always seems congested at night and is dry. I bought them both a cold mist humidifier for their bedrooms as well as a heater. Consistent use of those should help.
Eli had a pretty good day. Alex came for respite care and did a great job with Eli today. But as soon as Alex left Eli was fussy. He needs a lot more constant attention and help to do pretty much anything. And he's not happy as much as he used to be. It is kind of sad to watch and it feels hard not knowing how to entertain him or help him. I just have to make sure I try to get everything done while he's at afternoon kinder so that when he get's home, I can take him for a walk or sit and hold him and play with him, Evan and Laya.
Evan is my little monkey. I love him so much. He has been accepted into DDD (Arizona's Division of Developmental Disabilities). I am excited for him to get speech therapy and other therapies, I think he could really benefit from speech right now while he is still so perceptive, well actually receptive.
After School Solution - Today I realized that my after school problem can be better with a little adjustment from me. Things after school have been hard because of Laya's attitude and Eli and Evans restlessness and whining. I decided that I shouldn't worry about homework and just to leave that for later and use the time after school to have fun with the kids and relax. I will try to get most of dinner ready before the kids get home so that we can go for a walk or just play together. I think it will also help if I can get Laya into some more activities after school. She is back in Gymnastics now so that will help.
We are trying a different gym that does mostly dance and has some floor gymnastic classes. She had a great time! The first day, most of the kids were gone at competition, so only her and another girl showed up. Nice lunge girl!
This morning was very busy and stressful and I didn't have all the bags packed and ready to go the night before, which would have helped tremendously! Eli had OT up in town so I had to leave straight from dropping Laya off at school in order to get there on time. I had errands to run; get Eli's helmet adjusted, buy new strings for the back of their glasses that broke and fix the tray on Eli's wheelchair. I think tomorrow will be better. We won't have to rush to go anywhere.
Eli spitting up - Eli spit up 3 times this morning. He wasn't even bouncing, just sitting in his wheelchair when it happened. Nicolle, Eli's Habilitation worker, suggested we keep a medical journal on the back of his wheelchair and write down what happens with Eli, from spitting up to falling, to absence seizures.