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Sunday, November 8, 2015

The Power of the Mind...The Power of Gratitude

The Power of the Mind...

What an amazing thing our brain is.
This is the month of November and I was reminded that we should take advantage of this month to remember all that we have, all who love us, all of our blessings. When we can change negative thoughts into grateful thoughts, it will change us from the inside out. It can brighten our lives and affect other people for good.

We can kneel down and offer up a prayer of thanksgiving and it can turn a dark day into a bright one. When we think of all the things we are grateful for, I think the spirit affirms that to our hearts. He seconds the notion that we have SO much and we should be living with a feeling of gratitude as much as possible. Once we feel how important this idea is, and we apply it, we are filled with peace. When we are content with what we have, we can also be filled with love instead of anger, resentment, or even hate. What an amazingly simple, yet powerful action, the changing of one's thought is. If we just reverse an unkind or despairing thought to one of gratitude for that person or circumstance, it can change our whole perspective and demeanor. Our world could really use a lot more gratitude, don't you agree?

One example:
Since finding out about my boys' condition a year ago, I have gone through a lot of mental states. I've felt sadness and despair, anxiety and stress, and love and compassion. It's constantly changing, I'm a girl, let's face it, I don't stay in one state of emotion for long!! But hopefully, I'm much more stable and consistent emotionally now, then as a teenager!

I bet the first six months after finding out, I thought about my boys' shortened life span every day! It was something I couldn't escape, something I had no control over, something that seemed to loom over me each day.

Over this past year or so, I've realized the importance of living in the moment. I believe living in the moment is one key to feeling thankful. Seeing the beauty of the moment, taking time to breathe and enjoy our family and the beauties around us. And even trying to laugh and lighten up the mood during the stressful moments! I'm not the best at that, but there are some who are really amazing at it!! I think over time, our strength to handle difficulties gets better. As we handle tough situations well, our stress muscles get stronger, so that we are able to glide through those moments with much better ease and calmness, the stronger we get.

Changing my thoughts from "I am sad, this is terrible, I wonder what will happen....I wonder when....I wonder what I can find on the internet about.....Poor Eli....Poor Evan.....Poor Laya....Poor Brad....Poor me...!"

to:
"I am so grateful to have my children....this trial is a blessing in so many ways.....there are so many people who have done so much for us.....we are so blessed.....there is hope on the horizon....miracles happen....I am thankful for each moment I get with my children....this situation and my boys teach us so much.....God loves us.....whatever happens is meant to happen and I am going to enjoy this journey....I'm going to be the best person I can be......"

The power of thoughts....

I wish I could say I had beautiful thoughts all the time....I know my family knows how imperfect and kind of rude I can be sometimes! I do know that I am much calmer and happier now a days, especially when compared to last fall. I think overall I have better thoughts in regards to our circumstance. Really, there is so much we can be thankful for.....

Now for some pictures:

HALLOWEEN


I am...probably a vampire or Mrs. Addams (not sure if I pulled that one off!) Brad is a Zoo keeper or somethin'....Laya is a 50's girl, Evan is a super boy, (and no that is not supposed to be a treble clef on his forehead, It's supposed to be a handsome curl) Eli is a french artist. Laya literally placed all our outfits on my bed an hour before the trunk or treat and we went with it :) It was fun. I love Laya's creativity. 



 Monsieur Artist has his paint brush in his hat, ready to go to school!

Ready for trick or treating!

My cute Clark Kent. The curl looks more like an upside down bass clef this time...getting better!

A police officer on our block cleverly blocked off a crack in his cement. But the kids just had to lie down on it. 

Poor Brad, he was so young...and handsome...

Laya had a fever after trick or treating so she didn't eat any of her candy!! Poor girl. We knew something was wrong when she was adding pajamas to her Halloween costume. We didn't trick or treat long, Laya got really thirsty. So we came home and watched a Halloween movie. 

If you can't tell, Evan is really enjoying his Chocolate!!

CLASS FIELD TRIP

Marana Pumpkin farm field trip, I drove and brought Eli to meet his class there.


 A friend in Eli's class, Serena, was obsessed with helping Eli all day. She was by our side the whole time. She just loves Eli. There were also a few boys that came up to him and made him laugh. They are all so nice to him. They get so excited when he comes to school, since he is only there in the afternoon. 

You can kind of see Eli's face looking the wrong way! :) 

Trying to take some family photos. Here are the bloopers!









 Evan is such a good poser, don't you think? 


 He's always squishing Eli. 

 But I guess Eli likes it. 

 Yeah, Eli and Evan have no hair...unfortunately, we have to buzz them as quickly and painlessly as we can, once every six months!




RANDOM PICS

 At the Children's museum on Evan's birthday. 

 Eli all dressed up for church!

 Eli and Evan both LOVE this swing in our back yard. 

 Evan has a guilty look on his face. 

 Laya and Eli were both caught in the act at school, if you can see the stickers. It's a good thing!

 My cute little trouble maker. He is actually not really as much a trouble maker as he used to be. I find that he loves to help me with household tasks and can do a lot more than I give him credit for. He gets SO excited and feels very important. 


Thursday, September 24, 2015

Video clips from Eli's 3rd year! Such a good dancer!



Video clips from Eli's 3rd year, filmed March 2012 to March 2013. Eli has the Late infantile or Type 2 version of GM1 Gangliosidosis (a lysosomal storage disease), but has not been diagnosed at this point yet. Go to www.Gm-123.org to learn more.

Tuesday, September 15, 2015

Update on the boys

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
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!   
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
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. 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 :)

Monday, August 31, 2015

Highlight Video from Eli's 2nd year


   

Eli is now 6 years old. This is a highlight video of some clips from his 2nd year! Enjoy :)

Wednesday, July 29, 2015

June and July, 2015

Journal Entries


6/8/2015
Today I brought Laya and some friends to an Arts Camp. They had different classes on things like, drawing/painting, singing, acting etc. Laya had a great time. It was at a church that’s about 25 minutes away, St. John on the Desert. She was there from 9-3.


I worked on cleaning the house all day, which is very backed up since before our trip and summer break. I’ve got 5 rooms completely clean with 3 more to go. Those rooms haven’t looked that good in a long time! I played with the boys and took care of them in between cleaning. They are so much fun. I was able to focus more on cleaning when Brad took the boys, and I had a great time. I haven’t had any time alone in weeks. It felt great!


6/14/15
Eli - Cute boy, having a harder time getting around which is frustrating for him, but he is SO patient.

Evan - He is busy getting into things as always, but he behaves much better when I take the time to sit with him and play. He loves his pacifier and his blanket so much. He wanted them a lot today. He sure does know what he wants, he tells me no about wanting certain things all the time. He is such a picky eater, I can’t believe it. I will hold a spoonful of food to his mouth (usually fantastic, yummy food from my fantastic cooking skills :) and he will barely let his tongue touch it before he says, no and pushes it away. So crazy.

June 15, 2015
Laya helped out around the house a lot today. She also decorated all her baptism invitations, did a great job.

Tuesday July 7
Last week Amy, Bailee, Lucy and James Hadfield all stayed at our house. They came with my parents for the baptism, but then stayed an extra 4 days. I had so much fun having my sister around and her cute kids. It was a bit crazy having 6 kids under 8 around here, 4 of them in diapers:) but a fun adventure! We all got along wonderfully!









Brad's parents came and stayed for a week, they did a lot of fun stuff with Laya and helped me out tons.






My Parents came for the Laya's baptism, we had a great time with them, My mother's parents Grandma and Grandpa Litchfield even showed up. I was so surprised to see them and so grateful to them for making the effort to drive all the way down here. It was nice to see them and have them support us and Laya.




I drove my sister back to Utah with Laya and Eli. My sister was so nice to watch Eli for me while Laya and I had a fantastic Mother/daughter date at Lagoon.




  

I took Laya and Eli up to Lori (Brad's sister) in Idaho. We spent the 4th of July with them and had a great time doing fireworks, swimming and hanging out. We really did pack a lot into two days with them. We all loved getting to spend some time with them up there, so much fun. 











Drove down the next day to spend with my parents, ashley/ryan, cody/nichole and I got to see Cody/Nichole's house they are building. So excited for them. Unfortunately I didn't take any pictures.

I drove home the next day with Laya and Eli. It took me at least 16 hours. Long day, but it wasn't terrible.

Tuesday July 14
I was excited today because I finally figured out how to set up Eli's gate trainer properly. He was walking around with it for the first time! I was so happy, I knew he could use it if we could get it in the right position for him, because before he just didn't understand how to do it and couldn't really. Now I have him leaning forward and with the wheels locked in a straight position, he is able to do it. 

Evan has been very funny, busy, loving and clingy. He was sad when I left for the weekend to go to Utah and I think has been very clingy to me since then.

Saturday, July 18, I ran 6 miles for the first time ever. I slept in Eli's bed a little bit last night, cause he was having a hard time. He was so cute and cuddled with me long time. 

Evan was funny today. I cut his hair, it was very hard. 

Brad is awesome, he wants to learn how to build apps. He's almost finished with a game of Tic tac toe (with a bomb as a twist) as his first step toward learning the language.
Laya had a better day, I showed lots of love to her but was still on strike (not letting her do any extra things until she started treating me with more kindness). She didn't have any large outbursts and was pretty good!

Sat July 25
Laya asked Alex (Eli's respite provider) if he was a carrier of any disease. He said no and she warned him that he better watch out cause if he was a carrier and married someone who was, they would have children with a disorder. She told him, "but I am not a carrier." And just walked away.

Eli has a difficult time getting around by crawling, but if the back door is open, he always manages somehow to get out of that door and enjoy being outside, he is amazing.

Evan has developed further, he has much more attachment to his mom and dad, asks for us and displays fear of new people or situations. He also asks for his paci and his blanket anytime he wants comfort, he is a smart boy.

Monday July 29 - Ran 7 miles today, the most I've ever run! Once a week I will run my long run and then two shorter runs a week. I am training for the Suagaro 8 mile race coming up in September.

Tuesday, July 28 - Eli is doing well right now, besides his spitting up and gradual decline in coordination, he seems stable. No major health problems. I am counting my blessings!

Evan is also doing well, loving preschool and riding the bus with a healthy amount of hesitation. He communicates well in ways that he is able to.

Laya has been more polite these last few days, after I went on strike with her. No more yelling at Mom. She seems to respect me more now. I have been working hard on my patience and being a good example by staying calm and loving.

Wednesday, July 29 - Eli has been spitting up more again, frequently throughout the day as well as at night, even though I don't use the pump to feed him at night and I try to do his last feeding by 5:30. He still is up for an hour or so and usually coughing and spitting up in his bed around an hour after I lay him down. We may need to increase his reflux medicine or change the type. The nurse is in process of contacting our Pediatrician about it.

School started last week...yay! Even though it is still HOT in Tucson, mixed with Stormy afternoons and evenings, school just started. We have year round school here, so we only have 6 weeks off in the summer. I actually feel like I have time to keep up with the house now! 

Laya is in 3rd grade and very motivated to never get on orange or red (the naughty colors). She really wants to get on blue and purple (the good colors). 

Eli is in 1st grade and just going half day in the afternoon. He has some respite hours in the morning at home. 

Evan just started preschool at an inclusive preschool that is completely set up for children with special needs as well as main stream kids. He has been doing well and very excited to ride the bus. Sometimes he doesn't want to get off the bus to go to the classroom. I send him with his pacifier and blanket and he loves it. He hesitated to get on the bus at first, but then saw the other cute kiddos strapped in their little chairs and decided it was ok. 


He did not even look back at me when I dropped him off for his first day of preschool. He was too busy playing!

                                                                Evan's Preschool teacher!

 Evan's Respite Provider Suehelen

Choosing happiness...yay! I am done complaining! I am done feeling sorry for myself. I am choosing happiness and gratitude. I am done talking about the disorder more than I need to (unless I'm trying to raise awareness!) and I'm tired emotionally. I just want to be happy...and for the most part, I really am! Focusing on my family, the Lord and getting rid of things I don't have time for has really helped. I can do all those other things later. Right now, my family needs me.