Health Updates on the boys
Date - September 1st through Sept 15, 2015, Eli Age 6
Spitting up - Eli's been spitting up less, since we switched to a new formula (peptamen junior), which is partially broken down and has a higher density of calories. I lowered his feeding amount to only 80ml of water and 80ml of formula, 6x a day. I also lowered the pump rate/speed to 300ml per hour. He took his reflux medicine every morning and melatonin through the tube each night to aid in falling asleep.
Eating - He is having a tougher time eating by mouth. He usually coughs at least a few times every time he eats, I hear loud audible swallowing and he will often have a real choking episode at least one time each time he eats by mouth. He cannot have anything liquid in nature, it either drips right back out or he chokes on it. He can't have anything too hard, or dry as well. He does ok with food that dissolves quickly or has a crunch that breaks down the food quickly.
problems/sickness - Today he was super tired, he was almost falling asleep in his wheelchair at 11am. He then spit up 6x during the first hour of school or so. Prob after his 12pm feeding. So they called me and I came to pick him up. Never ended up getting sick or anything. (9/5) Very tired in the evening ready to sleep by 7pm (9/14)
Good things - He recognizes the song "I love you" from Barney. He always anticipates the part where I hug and kiss him by giggling before I get there. I love it. (9/3), He had a hard time falling asleep, 1 hour of laying there whining, grunting and crying when I came in. Brought him out of the room for a little while, then he went right to sleep. (9/4), Last night when I was tucking him in, I was singing his lullaby song and I got to the part that says mommy and daddy, he started talking to me, and he kept running some sounds together for a long time. It was fun to listen to him using his voice again. (9/12) He sat in my lap for a long time today while Laya and Evan and I were watching The Wiggles on the computer. (9/13), I took a video of him for Evan’s Ipad and he laughed and giggled lots! (9/14)
Evan Health age 3
Aug 30 - Evan is falling a bit more and has tipsier balance. He also stares at people sometimes and takes a few seconds to process what you are saying or what is going on. Other than those things and his hard to understand single words, he understands very well and can follow simple directions. He is very fun and cute to hang out with. And looks and acts pretty normal for his age.
Sept. 2 - Yesterday I heard a crash and a quick cry. I came running into the kitchen and found Evan under the table doing a silent cry. Then all of a sudden he clenched his fists and entire body and his face turned bright red. His eyes were wide and he wasn't breathing for a second. Then he came out of it and started to cry. It was very scary for me, I thought I might have to call 911. We visited Dr. Alec in Phoenix today and I told him about it. He said sometimes kids can get a shock reaction that will shock them to lose consciousness or stop breathing for a second. I put on his helmet for the rest of the day and have been doing that almost all the time since!
Sept. 12 Evan's helmet has saved him from a lot of bad falls lately! I keep it on him almost all the time now. I just ordered some new glasses for him today. I ordered some flexible toddler glasses. (Bambini glasses!) His other glasses can cut his face when he falls so it is a safety issue. Poor Eli has multiple scars on both of his eyes from falling and getting deep cuts from his glasses.
Evan has been asking for a lot lately and using names of people in the family appropriately. For instance he will say jump ("bup") when he wants to get on the trampoline. Then he will say "Mama" pause "bup" which mean, "Mama Jump with me!". Today he was looking at my face and pointing to my nose saying "Mama". I told him to touch mommy's eyes and he did it. Then he touched my mouth when I asked him to. When I said ears, he touched his ears and then mine. It is nice to see him understanding those things.
Journal
August through Mid September
Aug. 6 Eli giggles and short tempers
Eli and I had a really fun giggle session today. He was laughing so hard and it made me happy! He loves silly noises like tooting sounds or just imitating him. He says kind of an "Abu" word sometimes, so I was exaggerating it and he was loving it! He seems so normal when he is laughing.
I was getting easily offended by Brad today and much more short tempered than usual, I think that's a sign that I need to serve him and show more love to him!
3 People who care about Eli and help him every day at school. His teacher, para-pro and special needs rep.
Aug. 11 Evan's Communication App
Aug. 11 Evan's Communication App
Downloaded touch chat (aac, communication app) on Evan's Ipad. I am excited to start using it at home and school. Hopefully Evan will enjoy it and get the hang of using it to make choices or communicate needs!
Aug. 13 Be Patient in Afflictions
James: 2-4. 2 My brethren, count it all joy when ye fall into adiversbtemptations; (JST “Many Afflictions”)3 Knowing this, that the atrying of your faith workethbpatience.
4 But let patience have her perfect work, that ye may beaperfect and entire, wanting nothing.
I listened to an ensign article on patience and it talked about this scripture. It’s true, we should count it joy when we fall into “many afflictions” because this trying of our faith teaches us patience. And if we have faith and develop patience it will work in us to become more perfect. To become as God would have us become. This is part of God’s work and glory to perfect his children through testing and trying here on earth. But remembering that we are nothing without Jesus Christ's atonement.
Aug 15 Family fun - Today we went to the children's museum to celebrate Evan's B-day! We just followed Evan's lead. Once we saw everything, he was pretty much done and kept walking out the front door. So we left. :)
Unfortunately, Brad got a parking ticket since we were downtown. (chuckle) He didn't see any signs, but I guess he was parked the wrong way.
I can't believe my baby is not a baby anymore. He still loves his pacifier and blanket though, so at least I have that!
Aug. 16 - Evan's birthday, he is 3! Evan is 3 years old now! Such a cutie. He opened his presents this morning and had a lot of fun doing it. We talked to lots of family on the phone, which was fun.
Aug 17 - Laya's Behavior Today was a normal school day. Laya reverted back to some of her old ways after school, not wanting to do homework etc. But later she had to do her chores before she had dinner. After that, she behaved much better. I know she isn't very happy when she's being rude and wasting time. She's much happier when she is contributing to the house and listening to her parents. We had some nice mother/daughter time in her room. We cleaned it up a bit together and then she read to me while I combed and fixed her hair. I then read a page from the scriptures before tucking her in.
Aug 22 - Cleaning the church We helped clean the church building this morning. I brought Eli's gate trainer so he could walk around. He loved all the long straight hallways with no furniture. He was Having a great time!
Aug 23 - Day at home and Evan's fall - Another happy day at home. Brad and I are feeling closer, communicating well, and having fun with the kids. Laya is listening much better in general, Eli whines a lot, but is really happy when we are holding him or playing with him. He has to be in his wheelchair for his 6 feedings a day at least and any other times we need him to be transportable. Sometimes he hates getting back in his chair and will straighten his body to resist! Funny boy.
Evan fell hard yesterday, trying to get out the back door. He hit his forehead hard on the door jam and had an instant, large goose egg with a blue spot in the middle. It looked terrible and he was crying for a while. We all need to be more careful about checking behind us, cause he gets knocked over much easier now. He understands so well though and is saying hi and waving his cute little slow wave all the time. Today at church he kept saying hi to everyone in the hallway. He says "ha" for hi. So cute.
Aug. 26 Evan at Preschool - Normally Evan rides the bus, but since the district had a half day I took Evan to school. He had a small tear in his eye as I left, but quickly recovered.
Aug 31 - After school hang out - I want to start having a ritual after school where I sit down with the kids in the living room and just relax and talk with them. When I do that, everyone is so relaxed and we have a lot of fun. Today we cuddled and talked in the living room then sat at the table for snack time together. I want to do that each day or at least each day we can after school.
Sept. 2 - Appt. with Biochemical Geneticist - Today I drove Eli and Evan to Phoenix for an appointment with Dr. Alec. (Brad was going to come with me, but he ended up having to go to work, so I was on my own.) Dr. Alec is the biochemical geneticist who diagnosed the boys one year ago. Dr. Alec has become more and more interested in researching and treating children with different enzyme disorders by Direct infusion into the brain (probably through spinal tap). So I told him about the research that is being done right now with GM1. And how they're hoping to have clinical trials within the next few years. He hopes that if they do figure out the technology that it could implemented here in Phoenix to treat children. He believes that Eli and Evan are the only ones in Arizona that he knows about with the disorder. He hasn't heard of anyone else in Arizona and he thinks he probably would have. But it's possible there might be more. I gave him an update on the boys and gave him a more full history about Evan since he never got that from us. I told him about Minnesota, at least what I could remember. And about the clinical trial with miglustat. He said it seems as if we have been looking into every possible road and encouraged me to reach out to NIH if I felt so inclined. He told me he would stay updated on any of the latest with the research going on and GM1 and contact me if he hears of anything. He will also try to sit down and decide if he thinks they're more close to the late infantile or the juvenile type. Not that it will make any difference or even really tell us anything. But might be helpful to know. It was a long day of driving and a long appointments, so the boys weren't too happy. But we got through it and it was good and I'm glad that we were able to go.
The boys after our appointment in Phoenix, Eli had no pants on because I had to change his diaper during the middle of the appt.! Both had incomplete foot wear by the end and were very tired!
I listened to an ensign article on patience and it talked about this scripture. It’s true, we should count it joy when we fall into “many afflictions” because this trying of our faith teaches us patience. And if we have faith and develop patience it will work in us to become more perfect. To become as God would have us become. This is part of God’s work and glory to perfect his children through testing and trying here on earth. But remembering that we are nothing without Jesus Christ's atonement.
Aug 15 Family fun - Today we went to the children's museum to celebrate Evan's B-day! We just followed Evan's lead. Once we saw everything, he was pretty much done and kept walking out the front door. So we left. :)
Unfortunately, Brad got a parking ticket since we were downtown. (chuckle) He didn't see any signs, but I guess he was parked the wrong way.
I can't believe my baby is not a baby anymore. He still loves his pacifier and blanket though, so at least I have that!
Aug. 16 - Evan's birthday, he is 3! Evan is 3 years old now! Such a cutie. He opened his presents this morning and had a lot of fun doing it. We talked to lots of family on the phone, which was fun.
Aug 17 - Laya's Behavior Today was a normal school day. Laya reverted back to some of her old ways after school, not wanting to do homework etc. But later she had to do her chores before she had dinner. After that, she behaved much better. I know she isn't very happy when she's being rude and wasting time. She's much happier when she is contributing to the house and listening to her parents. We had some nice mother/daughter time in her room. We cleaned it up a bit together and then she read to me while I combed and fixed her hair. I then read a page from the scriptures before tucking her in.
Aug 22 - Cleaning the church We helped clean the church building this morning. I brought Eli's gate trainer so he could walk around. He loved all the long straight hallways with no furniture. He was Having a great time!
Aug 23 - Day at home and Evan's fall - Another happy day at home. Brad and I are feeling closer, communicating well, and having fun with the kids. Laya is listening much better in general, Eli whines a lot, but is really happy when we are holding him or playing with him. He has to be in his wheelchair for his 6 feedings a day at least and any other times we need him to be transportable. Sometimes he hates getting back in his chair and will straighten his body to resist! Funny boy.
Evan fell hard yesterday, trying to get out the back door. He hit his forehead hard on the door jam and had an instant, large goose egg with a blue spot in the middle. It looked terrible and he was crying for a while. We all need to be more careful about checking behind us, cause he gets knocked over much easier now. He understands so well though and is saying hi and waving his cute little slow wave all the time. Today at church he kept saying hi to everyone in the hallway. He says "ha" for hi. So cute.
Aug. 26 Evan at Preschool - Normally Evan rides the bus, but since the district had a half day I took Evan to school. He had a small tear in his eye as I left, but quickly recovered.
Aug 31 - After school hang out - I want to start having a ritual after school where I sit down with the kids in the living room and just relax and talk with them. When I do that, everyone is so relaxed and we have a lot of fun. Today we cuddled and talked in the living room then sat at the table for snack time together. I want to do that each day or at least each day we can after school.
Sept. 2 - Appt. with Biochemical Geneticist - Today I drove Eli and Evan to Phoenix for an appointment with Dr. Alec. (Brad was going to come with me, but he ended up having to go to work, so I was on my own.) Dr. Alec is the biochemical geneticist who diagnosed the boys one year ago. Dr. Alec has become more and more interested in researching and treating children with different enzyme disorders by Direct infusion into the brain (probably through spinal tap). So I told him about the research that is being done right now with GM1. And how they're hoping to have clinical trials within the next few years. He hopes that if they do figure out the technology that it could implemented here in Phoenix to treat children. He believes that Eli and Evan are the only ones in Arizona that he knows about with the disorder. He hasn't heard of anyone else in Arizona and he thinks he probably would have. But it's possible there might be more. I gave him an update on the boys and gave him a more full history about Evan since he never got that from us. I told him about Minnesota, at least what I could remember. And about the clinical trial with miglustat. He said it seems as if we have been looking into every possible road and encouraged me to reach out to NIH if I felt so inclined. He told me he would stay updated on any of the latest with the research going on and GM1 and contact me if he hears of anything. He will also try to sit down and decide if he thinks they're more close to the late infantile or the juvenile type. Not that it will make any difference or even really tell us anything. But might be helpful to know. It was a long day of driving and a long appointments, so the boys weren't too happy. But we got through it and it was good and I'm glad that we were able to go.
The boys after our appointment in Phoenix, Eli had no pants on because I had to change his diaper during the middle of the appt.! Both had incomplete foot wear by the end and were very tired!
Sept 4 - The dog - Good day. My main goal was to go to sleep earlier each night and I am doing better at that. I am changing main goal to not be annoyed with Nala (the dog) anymore. She can come into the kitchen or hallway, no big deal. (but I still don't want her in the bedrooms!) I am not going to worry about it. I just don't want her in the kitchen while we are eating dinner, but other than that, I can take a chill pill! The family loves her and I can take it for the team. It's not worth worrying about! 
Laya and her almost invisible companion
Laya and her almost invisible companion
Sept. 6 My Dad -My Dad told me a story today about his childhood. We were talking about Laya being in 3rd grade. And he told me that when he was in 3rd grade he cried every day because he didn't want to go to school. Granted, he had just had a lot of change, so it was a tough time for him. His Dad had died not too long before that, his mother had re-married and they had moved to Washington, from California 3/4 way through the school year. He also realized he couldn't spell worth a lick that year!
Sept. 12 Laya, maintaining a marriage relationship is like maintaining a house! Laya showed me what she wrote in her journal so far. She wrote about school, her love for a mystery boy who moved away, and the diary of a wimpy kid. She has been playing the piano more lately in order to earn time to play on Evan's tablet. I still have hopes that she will someday love it. I am trying all my new songs I have written in the workbooks with her.
I am starting a new goal focus now, no criticizing or complaining toward or about Brad! When I criticize, or complain to him about various things, it is like poison to our relationship! No more. I realized that marriage is like maintaining a house. If you let a house go for a long time and then you go to clean it, it will be in need of a major cleaning and probably repairs. Criticism is probably like mistreating your house, or being too rough on it. (or dropping poisonous chemicals on it). The key to a clean and nice feeling house is to maintain it each day. Keeping it up each day is much easier then letting it go for months until you have a huge problem. Brad and I need to have positive connections each day. (We often have stressful interactions with how things can be at home sometimes) so I am working on letting go of worrying about stupid things, trying to control, criticizing and complaining. Serving and showing love toward Brad each day is something I can do to help maintain our relationship as well. Our relationship is definitely more important than the state of my house and the other things on my list!
Sept. 9 Evan's communication device - I have made a lot of pages on Evan's iPad in Touch Chat for him to communicate with. There are songs I video'd me doing that he can choose between, snack and lunch food choices, outdoor play choices, morning and evening routines, family pictures, with extended family and friends, and inside toy/activity choices. One of the inside choices is watch a show on the TV or computer. Both yesterday and today he chose to watch The Wiggles. Today he watched them for quite a long time with Laya Eli and I watching as well. He loves to clap and dance to their music! Both Eli and Evan have loved them! They are super silly and crazy, which we love. :)
Sept. 9 Evan's communication device - I have made a lot of pages on Evan's iPad in Touch Chat for him to communicate with. There are songs I video'd me doing that he can choose between, snack and lunch food choices, outdoor play choices, morning and evening routines, family pictures, with extended family and friends, and inside toy/activity choices. One of the inside choices is watch a show on the TV or computer. Both yesterday and today he chose to watch The Wiggles. Today he watched them for quite a long time with Laya Eli and I watching as well. He loves to clap and dance to their music! Both Eli and Evan have loved them! They are super silly and crazy, which we love. :)
Sept. 14 Evan's wrestling technique, family videos - The neighbor boys, Broderick and Marcus stopped by to play after school. I usually let them play for only 15-20 minutes in the backyard and then tell them it's time to go home. Much longer than that and behavior starts to go down! Laya told Evan to wrestle with the boys while they were on the trampoline. I heard some noises I didn’t like and came outside. I found Evan with his arms locked around Marcus. He was taking him down and Marcus wasn’t loving it. Evan is actually pretty ruthless when it comes to wrestling!
We all made videos of ourselves for Evan’s iPad. He loved watching them. Laya made up a song about how much she loved Evan on the spot. It was creative, funny and beautifully sung :)
Thanks for continuing these updates, Marilee. You are so wise and patient. I'm glad that you have such wonderful family moments, and can recognize so quickly anything that needs to change. Cuddling and talking with my children are things that I definitely need to do more often. Thanks for the reminder.
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