Jeff's Journey

I Am The Child (Young man)

2012-02-09T09:48:00.000-08:00

Mom hasn't posted anything for me lately because not a lot has been going on. We've all taken turns being sick around here. Mostly it's been Mom & Dad being sick...I'm such a toughie and have really amazed Mom & Dad that I've been so healthy. Friday & Saturday's I've been going places (the movies, swimming, bowling, shopping) with Daniel, my support worker. With Mom & Dad being such sickies, it really has been pretty boring around here. I keep myself busy with my balloons, string and tape creations. I also LOVE my new swivel/rocking chair/recliner!

One of the CHARGE moms on Face book shared this with my Mom. She loved it and said everything but 'the child that cannot walk' fits me to a T. Enjoy!

Shared from Mommies of Miracles ♥
I Am The Child ~ Author Unknown

I am the child who cannot talk. You often pity me, I see it in your eyes. You wonder how much I am aware of — I see that as well. I am aware of much — whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far... greater, for I cannot express myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world about me. I do not give you rewards as defined by the world’s standards — great strides in development that you can credit yourself; I do not give you understanding as you know it.

What I give you is so much more valuable — I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers. I am the child who cannot talk.

I am the child who cannot walk. The world seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom, oh I’ve dropped my fork again. I am dependant on you in these ways. My gift to you is to make you more aware of your great fortune, your healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me; I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness. I am the child who cannot walk.

I am the child who is mentally impaired. I don’t learn easily, if you judge me by the world’s measuring stick, what I do know is infinite joy in simple things. I am not burdened as you are with the strife's and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity. I am the child who is mentally impaired.

I am the disabled child. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. I teach you about how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all I teach you hope and faith. I am the disabled child. ♥

2011-12-27T11:52:00.000-08:00

WOW, what a GREAT Christmas I had!! I have been so excited about Christmas that I was the one to wake everyone up this year! Dad is usually the one to wake me up, but I beat him to the punch this year... I got them up at 5:30 AM! I was just so excited!

We opened our gifts and Santa and everyone else gave me just what I like...things that spin, light up, and vibrate. Everything was so awesome! After we ate breakfast we got ready for church. We only had one meeting today and I was very well behaved at church. Mom said she was so proud of me.

When we got home from church, my Grandma and my Aunt Patti came over to share the day with us. We enjoyed a yummy dinner and lots of visiting. However, I really didn't visit that much. I just wanted to go to my room and break open all my toys to see what was inside them. I just haven't caught on yet that if I break a toy, it won't work anymore. But that's okay, because then I love all the pieces! I love to encase them in tape and tie string on them and hang them everywhere. I am a really creative guy you know! Mom did put a couple of things I got away because they are things that she has to help me with. Later in the early evening, I almost forgot about our Christmas stockings, and had to remind Dad that we hadn't opened them yet. Grandma & Aunt Patti had gone home, so Mom, Dad and I opened our stockings and wow, I got even more neat stuff. Yes indeed, I had an awesome Christmas!

Santa knows how much I LOVE balloons, so he always puts balloons under the tree for me. Here's a picture of me putting all 20 balloons on the table.

Here I am having a GREAT time popping all 20 balloons one by one. Every time one popped, I would just crack up laughing.

<><><><>

<><><><>

Here is my sweet little Grandma Baker. I love her. Isn't she just a cutie!

<><><><>

Here is my Aunt Patti. She spent the day with us too.

<><><><>

Here I am eating our yummy Christmas Dinner!

<><><><>

Here is my bucket filled with so many of the things I love. Of course, most everything was broken, but I still LOVE every piece! Ahh, it's been a perfect day and I'm one happy guy.

I sure hope everyone else had a GREAT Christmas too. Mom and Dad said that they love to see the excitement and joy on my face, and that I really make their Christmas. Mom said how blessed she is that she will always have a little boy to bring such joy, wonder & smiles to her on Christmas morning. Whatever, I know that I am loved and I'm a happy guy! Merry Christmas everyone!

Yea!!! Christmas Is Coming!

2011-12-13T09:25:00.000-08:00

I am getting so excited! Christmas is coming! Here is what it looks like at our house. When I see all these decorations go up, I know that a fun, special time is on it's way.

When things start looking like this, I KNOW it's Christmas time.

I love my countdown calendar. Mom doesn't have to remind me to move Santa to the next day. I do it all on my own as soon as I get up in the morning.

I get so excited when Mom hangs up our stockings. I love all the goodies that Santa puts there when he comes to my house.

My spinning, rocking chair sits right next to this. Oh how I LOVE to sit here and look at the Christmas lights on the tree.

I love my singing Santa, plus Mom's reminder that "He who has not Christmas in his heart will not find it under the tree."

This is one of our Nativity scenes. Mom says this is what Christmas is all about...Jesus being born. She said without Christ, there would be no Christmas. You know, I can't see well at all, I can't hear at all, my mind doesn't comprehend a lot of things, I can't speak at all, but my Spirit and heart work well. I can feel and understand things that work through the Spirit, and I have proved that to Mom many times.

I'm a happy, excited guy, and am really looking forward to Christmas. I love Jesus and Santa. Mom said she and I are going to make some Pumpkin Bread today to give to people...yea! Hope we can make a gluten-free one for me!

Posted by My Mom

The Case Of The Missing Camera

2011-11-17T10:55:00.000-08:00

Winter is on it's way here at the Baker home and a lot has happened since Mom last posted for me. I'd better let you know that there won't be any pictures for a while, at least until Mom gets a new camera.

Here's the story . . . .

After Halloween, Mom left her camera in it's case, on the counter for a couple of days. Silly Mommy, you'd think she'd know better by now that you DON'T leave anything like that within my reach. I got up during the night and YEP, I TOOK IT! I encased that sucker in tape, string and more tape. She saw this little square shaped thing in my bucket one day, but didn't think anything of it, as I always have weird shaped things encased in tape in my bucket. I ended up throwing it in the trash when I cleaned out my bucket. A few days later she went to get her camera to download my Halloween pictures and a few others, and that's when she noticed her camera was missing. The case was there, but no camera. She spent about a week  looking everywhere for it. After much looking and even praying, she remembered this little square thing she saw in my bucket one morning.  Her brain light came on and she realized THAT was her camera. Of course by then, the trash had been picked up and it is somewhere in the Franklin Co. landfill. So the case of the missing camera has been solved. Silly, silly Mommy! She is still learning lessons the hard way.

Okay, so guess what I was for Halloween? I'll give you a couple of hints...it's my favorite kind of candy. Mom always keeps a GIANT bag of it handy to reward me for my toileting efforts. If you know me well, then you guessed right . . . That's right I was an M&M peanut!!!  Mom was a M&M plain candy.

I REALLY love Halloween. I LOVE wearing costumes and getting candy. After all these years, I've got this thing down pat. While wearing my costume, I sign 'trick-or-treat', then I take one candy (but a lot of times people throw me off by having me take more), then I sign 'Thank You', and quickly move on. The only thing I haven't figured out is . . . where does all that candy I got go, once we get home!
(*Mom's note - because of Jeff's Celiacs Disease, there's a lot of candy he can't have, so Dad thoughtfully eats it so Jeff won't get sick.)

Moving on . . . I have a new CSW (Community Support Worker). Her name is Toni Kelly. She just started working for/with me on Tuesday. So far I'm trying to be good and not test her too much. I think she's going to be good. Of course, she's not my buddy Kalin, but I guess I can be flexible if I have to be.  Kalin got a job with more hours and full benefits, so even though I miss him, Mom and I understand that it's better for him & his wife. When Mom gets a new camera, I'll have her post a picture of Toni and me. So far, she and I have gone shopping and swimming this week. Oh, and my CSW and buddy Daniel, (he worked with me until school started in August) will be working with me on Fridays & Saturdays until Track season starts. So I'm a happy guy! I get to get out and do lots of fun things without Mom. I love her, but I do need a break from her always telling me what to do. Mom's can be funny that way, and guys need a little space. I think it's good for her too, as she can be so 'clingy' concerning me sometimes.

Posted by My Mom

Good Bye Summer - Hello Fall

2011-10-10T14:31:00.000-07:00

Even with Mom recovering from back surgery, I have had a GREAT Summer!!

Daniel Seamons worked with me most of the summer and I had a good time with him, doing all my favorite and fun things.

In late August, my good friend and buddy, Kalin Hansen, came home from going to school abroad in Chile. He brought home with him his beautiful wife Karen, that he met and married while he spent a year there. Mom said things worked out really great because just as Daniel was going back to school, Kalin came home and wanted to be my support worker again. We are working around his college classes, but he takes me out from noon to five, M-W-F. Tues. & Thurs. it's only from three to five. But I'm having so much fun.

Here's a picture of me and my good buddy Kalin.

We do a lot of things together. We go shopping, to the movies, bowling, play basketball & soccer, go to the park. We went to both the Franklin County Fair and the Logan, UT. fair. I had a ball at both! Below are some pictures of the fun things we've been doing . .

Kicking the soccer ball around. . .

Just relaxing and tying string on the merry-go-round at the park. I love things than spin around.

Playing on some of the equipment at the park.

Bowling . . .

Shucks, I only got 8 pins.

I like to go shopping and look at all the cool things, learning to keep my hands to myself, and deciding what I want to buy. This cool skull is what I picked out and I LOVE IT!! We're in the car on the way home, and I'm worn out from shopping.

My all-time FAVORITE thing to do is swimming!

I was teasing Kalin. He kept signing for me to 'smile' for the camera. So I just signed 'smile' right back at him. Mom says I have a fun sense of humor.

Ahhhh . . . the joys of life. I LOVE this chair!! It also keeps me up out of the water so I don't drink the pool water. I still don't understand why they don't want me to do that.

Yep . . this is the life alright. I could stay here all day!

I'm a happy guy. Life is WONDERFUL!! I'm king of my house, my family loves me, I get all the string, tape, and balloons that I want, and I've got a great buddy to do things with! What more could a guy like me ask for? Yep, I'm happy and blessed.
Posted by My Mom

2011-08-14T15:09:00.000-07:00

Since Mom is FINALLY trying to get my blog updated, she's now going to post about my dental check-up from last month. When I get my dental work done, I have to go into the operating room in the hospital. I don't entend to let ANYONE get into my mouth unless I'm out cold. So, that's what they do....put me out cold. It's no big deal for me. I go in happy, the dentist cleans my teeth or does any work that needs doing, then I wake up, go home, and I'm usually happy. It was a piece of cake because I had no cavities this time.

Before.....
During.....

After.....

See, a piece of cake!

Posted by Mom

THE BIRTHDAY BOY!

2011-08-10T14:41:00.000-07:00

Just wanted to let everyone know that I had a great birthday!! I got lots of birthday wishes from so many of you....Thank you for remembering me.

Because I get 'over stimulated' when there's lots of people around, it was just Mom, Dad and me. Mom made me this yummy Tagliatelle gluten-free pasta w/shrimp, veggies, in a garlic cream cheese sauce for dinner dinner. Mom is cool, she knows how much I love pasta! Oooo it was good. Then, for desssert I had an awesome gluten-free choc brownie/ice cream birthday cake.

Here's a picture of me before blowing out my candles.

Here's a picture of me enjoying my birthday cake...YUM!

Here I am playing with one of my birthday presents....I LOVE these things!

I stayed up really late on my birthday playing with the toys I got. Then, the next morning I did the same thing. I was so engrossed building things, that I completely forgot that I like to eat every two hours. I didn't stop until after lunch, and only then, because Dad made me come eat some lunch. And get this, I didn't take a nap at all that day!!!!! I ALWAYS take a nap sometime during the day. Man, I was just too busy! Yes sir, it was a great birthday!!

Posted by My Mom

A Letter To My Son

2011-08-07T06:15:00.000-07:00

My Darling Son,

Soon you will be 27!! As I look at those years, I realize they have gone by so very quickly. As your birthday approaches there are things I wish I could say to you. Because of the challenges that afflict your body, and bind your mind, you would not understand. As I morn the loss of the verbal communication that we can never have here on earth, the feelings within my heart spill out of me with no place to go.

As other young men your age move on from their missions, graduate college, have jobs, get married and start having families, do you ever wonder what your future has in store? No, I suppose not, as the future is not anything you can comprehend. Because of your mind, what others consider "normal" everyday hopes and dreams, have been taken from you. But dear Jeff, after this long earthy journey ends, you will be given all that you have missed out on in this life.

If you were capable of ever asking, Why am I here? - This is the answer that I would give you. YOU ARE HERE TO BE MY TEACHER, and a teacher to those around you. One day, in the next life, you will be able to open this gift with joy and understanding.

First, you taught me what it means to experience the kind of love that exists only between a mother and her child. Sometimes I thought I would expire from sheer elation. Sometimes I thought I would expire from sheer exhaustion. Both could claim Mother love to be their sire.

From the very beginning of your life, you suffered with many life-threatening health conditions, surgeries, and physical challenges; you taught me patience, tolerance and long-suffering. You also taught me about sacrifice, charity, service, and what it means to forget one's self. I yearned with every fiber of my being-would have given every fiber of my being, to have you whole. But that was not to be. You then taught me to accept and cherish you for who you were, not for what might have been. You have taught me to study, learn, fight and to never give up.

Throughout the years you have taught me what is truly important in this world and quite frankly, what is not. Most of all, you have taught me what it means to align my will with that of God. To know that, in every case, His ways, His means, His timetable, His truth, are all that is worth having. You have taught me how much He loves me, and how much trust He has placed in me, by allowing me to have you in my life. I know that if I am ever to return and live with Him, I needed all the things that only you, would and could teach me.

You, my son, ARE A TEACHER, and the gift of knowledge has no price!

Thank you for all that you have taught me. I love you beyond measure, forever, and always.
Your loving Mother

Posted by My Mom

There's Going To Be a Lot of Catching Up To Do Someday!

2011-08-06T09:39:00.000-07:00

In February Mom's back started getting bad. She has had a lot of pain ever since! Something about a bulging disc pressing on a bunch of nerves. Nothing seems to be working and the doctor is talking surgery. To be quite honest, she's been no fun at all. Plus, she hasn't posted anything at all for me. I've been having lots of fun this summer with my support worker Daniel. He's a cool guy, and I like doing things with him.

My great Dad has been doing almost everything for me and for Mom. He has learned how to help me with all my personal cares, fix my food, clean up after me, and well, basically everything that Mom always did. I wanted Mom to post this for me, just so you guys know I'm still around, happy and enjoying life.

Posted by My Mom

2011 Has Begun!!

2011-01-02T15:18:00.000-08:00

HAPPY NEW YEAR EVERYONE! Wow, it's a new year with lots of great and enjoyable things to look forward to. Well, that's what my Mom says anyway.

This is how I spent New Years Eve.....

Yep, that's me under all those covers & pillows. I'm sound asleep and so was everyone else here at home. I don't really understand all the fuss about New Years Eve. When I'm tired, I want to go to bed. Mom and Dad must feel the same way, because they do the same thing. Mom said there was a time when they used to stay up and ring in the New Year, but they are old now and need their rest.

Now that the holidays are past, I'm looking forward to doing some snow shoeing, and X-country skiing with Common Ground when they start. Mom is encouraging me to get more exercise so I'll be stronger when I go and do the fun winter things Common Ground has planned. She thought it would be good for me to start walking. So she and I are walking on the treadmill everyday. We make a great team! She motivates me and I motivate her.

Here's a picture of me walking on one of the treadmills at home. Mom usually walks on the big one next to me, but she got off to take the picture of me.

I think it is so cool to walk on the treadmill and I really enjoy it. I like it better than walking outside because it's nice and FLAT! Remember, I don't like walking on uneven ground. Plus it's only 15 degrees out...to cold for me!

Posted by My Mom

Christmas Was So Fun!

2010-12-29T11:25:00.000-08:00

WOW, what a fun Christmas I had! It was just Mom, Dad and me, but it was just great! Dad came into my room to wake me up at 7 A.M. He had been awake since 5 A.M. and wanted to wake me up then, but Mom wouldn't let him. She wanted to sleep a bit longer but Dad kept asking her every 30 minutes if he could go wake me up. Finally at 7, she gave up trying to sleep, and when he asked her again if he could wake me up, she said yes. Dad came into my room and woke me up and signed that Santa Clause came and brought presents. As most of you know, I move pretty slow, but when he told me Santa came, I flew out of my bed. When I went into the living room and saw the balloons and presents, I was so excited, and I just kept smiling and laughing. I popped a couple of balloons first then Dad started handing me the presents. I loved opening them and had to examine each one thoroughly before I could move on to the next one.

After I opened all my gifts, we ate a yummy breakfast. I surprised Mom by communicating to her that it was time and I wanted to see what was in our stockings. That's the very first time I have ever done that. But I knew that after breakfast we always get our stockings. Since she didn't say anything, I did! She and Dad were proud of me for doing that. I got more neat toys and candies in my stocking.

I loved all the toys I got and true to form, I had most of them broken by that evening. I LOVED playing with and taking apart my toys. And when I had nothing but pieces left, I LOVED playing with the pieces. I didn't even stop to take a nap during the day like I usually do. I was totally engrossed with playing and taking everything apart. Mom put some of the things away....things that she needs to help me play with, but that was okay with me. It was really a GREAT Christmas!!! Here's some pictures Mom took.....

Posted by My Mom

All Ready for Christmas

2010-12-14T11:05:00.000-08:00

It's been so much fun getting ready for Christmas this year. Last year I didn't think we were even going to have a Christmas because Mom took so long getting things up. But WOW she surprised us all by having everything done super early this year!! The halls are decked, and the tree trimmed...

The family Christmas letter has been written and mailed, gifts bought & wrapped, and presents mailed. Mom has never been this organized, this early, before.

We had our family Christmas get-together this past weekend. It was so fun to see my sister, Kelly, and her family and my brother, Steve, and his family. We had a great time together and I loved playing with my crazy nephews. Kade really makes me laugh.

We also went to the ward Christmas party where I got to see Santa Clause! I like that guy...a lot!

My nephew Phoenix likes Santa too, but my niece Reagan didn't like him.

Mom says we can now just bask in the spirit of Christmas and enjoy every moment of it. I love to sit in my chair and look at the lights on the tree.

I also like counting down the days to Christmas on my calendar.
Even though Mom & I have been busy doing all our Christmas stuff, she still took me to the movies to see the movie "Tangled". Cool movie, I loved it! It's antimated (of course) and it was in 3D!!

Oh, and get this...Usually just Mom & I go shopping in Logan, but one day Dad decided that he would go with us. Mom went off and did her shopping and Dad let me go up and down the isles looking at whatever I wanted to look at. I got to look at toys, tools, light fixtures & light bulbs, and electronics - all my favorite things. Man, I was in heaven! I hope he comes shopping with us more often because I have a lot more fun when he comes. Mom liked it too.

I really love this time of year and life is GOOD.

Posted by My Mom

FREE At Last!!

2010-11-28T10:08:00.000-08:00

I'd been couped up in the house for over two weeks and I was going CRAZY! They FINALLY let me out of the house!!! Friday, Mom and I went to the movies in Logan. We saw the movie "Megamind". It was in 3D and I LOVED it! It had everything a guy like me likes - it was antimated and had lots of action in it! It pretty much held my interest and I only broke 3 pair of 3D glasses during the movie.

On Saturday, we were on a roll, and Mom took me into town for some fun. In Preston, they had all kinds of fun activites planned for the day. Bed races at 2:00, a gift fair, free christmas movie at 3:00, visiting with Santa, lots of Christmas music, fireworks, and the Lighted Christmas Parade. Santa wasn't there when we got there, so I didn't get to see him. Mom said I can see him later and I was okay with that. I REALLY like that guy! We went into some stores and it was just great being out and about again.

Today we went to Church. I hadn't been in about 3-4 weeks (because I've been sick) and I had a hard time remembering to be good. We got a new Bishop today. Bishop Rassmussen is our new Bishop and Dad is still the ward financial clerk. He likes the calling and must do a good job, because this is the 4th bishop in a row to call him to that position. I'm going to like my new Bishop, he's a cool guy. Anyway, I made it through Sacrament meeting, and almost through Sunday School. I just couldn't control mayself any longer and started being kinda wild. It worked, Mom took me home. Do I know how to get my way or what?! Just the thought of sitting through another hour of meetings was more than I could handle. Two hours was plently for me today.
Posted by My Mom

Being Sick Stinks!!!

2010-11-21T12:39:00.000-08:00

Being sick really does stink. I've been sick with an upper respiratory infection for two weeks now! I've spent my days sleeping, eating, resting, watching TV, taking my medications, and coughing my head off. Let me tell you, it has not been fun. Mom & Dad have said I've been really good during this sickness, but the reality is that I just haven't felt like doing very much of anything. BUT I am getting better, and I plan to be back to my old self very soon now. I'm napping a lot less, cough is almost gone, and I'm starting to get bit bored, which means I'm not being quite a good as before. Hopefully they'll let me out this house soon!!!! I've sure missed a lot during this two week period. When I first got sick, this is what it looked like outside at my house:

Now THIS is what it looks like outside my house:

I've missed so much!!! It's gone from Fall to Winter, since I've been sick! The snow pictures are just from this morning. It has been snowing all day and we have about 4 inches out there right now and more keeps coming. Boy, with all this snow, even though it's not even Thanksgiving yet, I'm starting to think CHRISTMAS!

Posted by My Mom

Trick or Treat

2010-10-30T19:15:00.001-07:00

Like I said earlier, today has been a fun, fun day! First the 5K race then tonight's Halloween fun. Halloween is such a fun time! I really like dressing up and going to our Trunk-or-Treat at the church. Because Halloween falls on Sunday this year, we had our Halloween celebration tonight. I dressed as a doctor, with Mom as my assistant. For those of you that don't know what a trunk-or-treat is, maybe I should explain. When you live out in the country like we do, it's really hard to drive to everyone's house, so everyone meets at the church. We decorate the trunks of our cars and all the kids go trick or treating from car to car. They start off by having all kinds of food like soups, chili, hot dogs, nachos w/cheese, and hot chocolate for everyone to eat. Then we go from car to car to get yummy candy. It's so COOL! Here's a picture of me as Doctor Baker. . .
Here's me and my nurse assistant going car to car getting some yummy candy.

Here we are again.....it was a fun time.

Posted by My Mom

Special Olympics is FUN

2010-10-30T10:37:00.000-07:00

WOW, what a GREAT day I've had today!!! We had a 5K run/walk race today for our Special Olympics fun raiser. This was my first 5K race EVER, and man it was so FUN. I LOVED it! Here's a picture of me before the race. . .
Since Mom was going to be doing the pushing, here's a picture of her and me before the race. . .
I had sooo much fun! I kept wanting to put my feet on the front tire, and for some reason Mom didn't like that. She kept saying I was making it hard to push. Here's a picture of us just past the half way mark. . . .

This is what happened after that . . .

Not really, we just did this for fun and had a friend take a picture. Mom pushed me the whole way, with me laughing and teasing her with my foot on the tire occasionally. Mom decided that I really did need some exercise, so about a block before the finish, I got out of the jogger and walked, helping Mom push the jogger. About 20 feet before the finish line Mom got in the jogger and I pushed her to the finish line!. I was so awesome!!! Everyone was cheering me and I was beaming from ear to ear. I finish 2nd place for men in the walk!!!!! I was so excited and loved all the attention. At the awards ceremony, I got my picture taken, and I won a gift certificate for a free foot bath & reflexology massage. How cool is that...you all know how I love FEET!!! I also got a certificate that entitles me free entry to next year's race! Mom's trying to convince me to let her have the foot massage. Maybe I'll let her as long as I can watch, because I LOVE FEET!!!! Yes folks, it was an awesome day for me. I drank my water, ate my banana and when we got home I ate some gluten-free pizza and took a nap. I was tired after all that exercise, fresh air, laughter, excitement, and just being caught up in the crowd. And the day is still young. I've got lots more exciting Halloween things later today......but that's for the next post.

(Oh, BTW, there were about 120 runners/walkers in the race and we raised $1200 for our little Preston team! Yea!)

Posted by my Mom

What A Way To Start Off the Month of October!!

2010-10-02T19:20:00.000-07:00

Okay everyone, you've got to hear this one!! My Mom and I went to the movies yesterday. I got to see Alpha and Omega. It's an animated movie about wolves. I got to sit in the very front row, which is my favorite place because I can see the screen pretty good there. I also really like feeling the vibrations in the movie. Anyway, it was pretty good because there was lots of action in it. Everything was great ... we'd gone to WalMart earlier and Mom let me walk around and look at anything I wanted to look at, which was cool. Then we went to the movie. After the movie we went to the health food store and bought some gluten-free foods for me. Then we went to Sams Club. I was in the wheelchair, doing just great when we got there. Then all of sudden, I felt really bad. I signed restroom to Mom, so she took me in. I had some diarrhea, but I was really hot & sweaty. Then my stomach hurt really bad. I wanted to throw up but I couldn't. I even tried putting my fingers down my throat to make myself throw up. I just collapsed on the floor of the bathroom, writhing in pain and moaning and groaning. My stomach was rock hard and very distended. It scared me and Mom. It took Mom awhile, but she finally got me off the floor, cleaned up and into the wheelchair. We immediately left and Mom took me to the ER at Logan Regional Hospital. I could hardly move I hurt so bad. I had a fever, my BP was 168/100 and my pulse was 90. I was soaking wet from perspiration. Mom was afraid I had some kind of intestinal blockage. They hooked me up to an IV right away and gave me some medicine in the IV to help with the pain and something for the nausea. At this point I let them do whatever they wanted, I felt so bad. Next they took me for some X-rays. When the doctor came back in to tell us the X-rays showed no blockage, or twisted bowel, Mom was relieved. He then ordered an enema for me then depending on the results of enema, he'd want to do a Cat Scan. By now I was feeling a lot better and there was no way I was going to let that nurse near me with that enema thing. Mom ended up giving it to me. There was little results. But I was finally feeling better. We had been there four hours!! By now, I wanted to go home so I kept signing 'home'. Mom talked to the doctor and they gave her another enema thing to bring home with us. Thankfully Mom hasn't had to use it on me yet. We have to go see Dr. Beckstead, my regular doctor on Monday. What a terrible way to end a perfect day. I was having such a good time then, wham!!

Posted by My Mom

Life Has Been Different and Hard

2010-09-22T16:24:00.000-07:00

Okay, here it is nearing the end of September!!! My mom has been very bad lately! She not only hasn't been posting for me, but can you believe it, she actually left me for 6 WHOLE DAYS!!! Boy was I ticked off. (More about that later!)

The end of summer was kinda boring for me because we haven't been able to find a support worker to take Kalin's place. Mom would take me places, but hey, that's just not the same as being with a buddy. I know she means well, but a guy needs a friend to hang with and do fun things with. She's doing her best to find someone. She's doing all the foot work, and keeps saying...the Lord loves me and HE will provide. I've gone to the movies a lot, bowling, the fun center, rock climbing, and shopping. I've been to two fairs, different sidewalk sales, an artist display where there was all kinds of neat creations, and a couple of parks and the Zoo. It was fun and I enjoyed them all, but Mom had a hard time keeping up with me....she's old you know.

Okay, now for the dirty trick they played on me. My Dad was going to run a 10K race in Coos Bay, Oregon. This was not just ANY race . . . it was the Steve Prefontain Memorial Run. My Dad ran it 2 years ago and got 3rd in his age division. Well, he's been training ever since for this one race. He planned on getting first in his age division this year. He worked hard, trained hard and sacrificed much to reach his goal. (BTW, he won & took first by over 3 minutes!) But get this... he only wanted Mom to come with him to the race. Said it would be a good break from me. They kept telling me about them leaving and Steve coming for a few days and then Kelly coming for a few days to watch me. Now, I really do love my brother and my sister, and I like it when they visit and I get to see them. But it's a whole different story for them to come live in MY house and tell ME what to do! Boy, oh boy, I gave it to them good. I didn't let them rest for a minute. I broke everything I could get my hands on just to show them I'm ticked off and I'm not doing what they tell me to do. I tested them on everything. I threw things - water bottle, food, whatever I could get my hands on. What did everyone expect, my whole world was turned upside down!!! I can't handle CHANGE, and with Mom and Dad gone, everything was different! I love Steve & Kelly and they did a good job, but I was totally thrown off by having things change. I'll bet Mom and Dad don't leave me like that again for a long, long time! We have broken wooden shutters, 3 broken lamps, broken light bulbs, broken salt & pepper grinders, a ceramic head that was hanging on my wall-which when it broke, marred my wood floor, I ripped the skirt off the couch that Mom was in the process of sewing on (I cut it off the couch with scissors a while ago), broken plates and I can't remember what else. Yea, I think they'll think twice before they do that to me again! I don't do these things to be mean or spiteful, it's just my way of communicating that change bothers me, and I can't handle it.

*Note from Mom - I know Jeff sounds pretty bad here, and I must admit, he was bad. But he needs a controlled environment, one that doesn't change. His routine needs to be the same and predictable for him. When something changes, he truly can't handle it. Since he is totally deaf, legally blind (can see a little in one eye) and is nonverbal, the only way he can communicate is with his behaviors. I have to admit, he communicated his feelings quite well through his actions. I am so grateful to Steve and Kelly for their willingness to disrupt their life and that of their families, just to stay with their brother. Thank you both so very much! I love you!

Posted by My Mom

Ahhh Spring At Last!

2010-04-14T10:46:00.000-07:00

Here it is the middle of April and Spring is just now getting to my corner of the world. She sure took her sweet time getting here!! There is still snow on our mountains around us, but I'm finally beginning to see some green grass in our lawn. Haven't seen any flowers yet, and the trees are still bare, but that will change soon. It is so nice having some warm, sunny weather for a change. Mom and I have even taken a couple of walks outside on the nice days. It feels so good to be outside in nice weather again. And I can hardly wait to go SWIMMING!!!

The last post on here was in February. Mom, being true to form, was sick a lot in February and all of March. She ended up with Diverticulitis and has just now gotten it under control. She was in a lot of pain, and was no fun to be around. Things got pretty boring for me, but I tried to help her by being good and intertaining myself. We did have a friend (thank you Kayrene) come and stay a while to help Mom and me when Mom was really bad. It was really nice of her, but it's good to have my old Mom back.

My support worker Kalin, has been pretty swamped with his classes at the University and his other job, so I haven't been with him very much lately. Since he can only work with me about one day a week now, Mom has hired a new support worker for me. Her name is Evelyn Rawlins. Mom and Kalin have been training her lately and today was my first day alone with her. I guess today is MY day to train her! I'm still getting to know her, but I think I'm really going to like her. We went shopping today at ALCO. I LOVE looking at their toy, tool and hardware section! I tried hard not to give her a hard time. Then we went to the market because Mom had asked me to buy two things for her - eggs and milk. I always forget that I'm not suppose to THROW the eggs in the basket. I don't know why I have such a hard time remembering that. It's good that Evelyn was there to remind me. Then I had to remember to not drop the milk on top of the eggs. This shopping thing can get pretty complicated and messy if you're not careful. Anyway, I think Evelyn is going to work out fine. She is the Young Women's President in her Ward so she knows how to have fun. She is patient, and kind and she doesn't let me push her around...but we'll see. I'm not done testing her yet! I'll keep you posted.

Another Showshoeing Adventure

2010-02-11T19:19:00.000-08:00

Yesterday I had another GREAT snowshoeing adventure! We went with Common Ground adventure group again. And yes, Mom took me! After our last one, I really didn't think she'd ever take me again. But she did, and we had so much fun! Yes, I said WE!!

First off, somewhere between the last adventure and this one, Mom got smart. Duh, she finally remembered that I really do have a bad balance issue. You see, because I have adapted so well in spite of having such poor balance, she forgot just how bad it really is for me when I'm on unlevel ground. After experiencing the effects of that first hand on our last adventure (see January 14 post), she made arrangements with Common Ground ahead of time for me to be able to use the ski walker. The ski walker is actually a walker attached to skis. It really helped me keep my balance while we snowshoed. It worked really well and Mom only needed to guide the walker if I started going crooked. I still thought it was really funny to try to kick her ankle with my snowshoe with each step for a while, but just as before, she didn't think it was very funny. I don't know what it is about her, she just doesn't have much of a sense of humor sometimes. I thought it was the funniest thing and just kept laughing! After a few time outs, I got the hint that she didn't like it and I'd better not do that any more. We went to a place called Squirrel Hollow, up Strawberry Canyon in Idaho. It's up in the mountains about 20 minutes from our house. We had never been there before and it was so beautiful. The trails were well groomed, very dry snow was falling, a nice crisp but mild wind blowing, and it was just so beautiful with all the trees and snow. I had a great time and so did Mom! The only bad thing about the day was Mom took out her camera to take some pictures so you could all see pictures of me snowshoeing and using the ski walker, and it wouldn't work! The batteries were dead!! Silly Mom forgot to check the batteries before we left the house. Sometimes she does the dumbest things. She says it's because she's getting old.

I was pretty good on the bus ride this time. Going there, I was excited like I usually am. I, of course, had to turn every knob, lever and handle on the bus, plus open and close the windows. Oh . . . it was so funny, I even got the emergency window to open!!!!! I laughed so hard and couldn't stop laughing! Mom looked a little embarrassed, but I thought it was really, really funny. I had everyone on the bus laughing except Mom and the driver. Coming home on the bus, was quite a different story. I was so tired from all that exercise (I must have walked 100 miles, but Mom thinks it was only about 4. But we all know she's not good at guessing distance), that I just kicked back and laid against Mom. I was to tired to touch anything!! When we got back to Preston, Mom took me to lunch and yum, it was so good! I had really worked up an appetite! Next, while we were in town, we went to the market to do some grocery shopping. I am usually busy rearranging the stock on the shelves and touching things, but I was so tired all I wanted to do was sit in the cart for big people, and let Mom push me around. I didn't move. I usually have to check out all the light bulbs in the light bulb isle, the toys in the toy isle, and look at the magazines at the checkout isle. Nope, not this time, I didn't move an inch. When I got home, I went to bed and took a nap!! Mom says she's thinking maybe I should get some snowshoes and walk around the yard everyday....but I think NOT!!!

It's That Time Of Year

2010-01-31T17:25:00.000-08:00

It's that time of year again....for doctor visits that is. I've been busy going to see all my doctors that keep tabs on me.

I got some good news from Dr. Clegg, my new Orthopedic doctor. He said my scoliosis has just stayed the same and it probably will not get any worse. He showed us on the X-ray that my growth plates have closed and said because of that, my scoliosis won't get any worse. He also said there is no reason for me to get X-rays every 6 months any longer. Only if Mom sees something has really changed do I have to go back. He did ask Mom if anyone had ever mentioned that one of my legs was a lot shorter than the other. We had never heard that before, so he gave Mom an insert to put in my left shoe. He thinks that will help, especially with my balance. He also said the lower lumbar curve that I have could be caused by that. WOW. So, I'm wearing my insert and so far I'm being good and leaving it alone and not trying to take it apart. Mom says she hopes it lasts.

I didn't get very good news from my eye doctor, Dr. Cromwell tho. My cataract on my good eye has grown. It is now big enough that surgery should be done. He suggested that since I'm not a candidate for the normal kind of cataract surgery, and since I'd have to have general anesthesia, he recommended waiting, until Mom sees that it is really affecting my vision. Mom and Dad didn't look like they were happy to hear that the cataract had grown. The good news was that my retinas look good and haven't become detached. Mom seemed pretty happy about that. Other than the cataract getting worse, my vision stayed pretty much the same. I have some cool looking glasses, but I hate wearing them, in fact, most of the time I REFUSE to wear them. If Mom makes me, I let it be known that I don't want them on by trying to break them. But, Mom keeps trying - she can be so persistent sometimes. HoHo, so can I! When I put my glasses on, I can actually see things farther away. It's pretty cool at first, then I want back in my own little world where I feel secure and most comfortable.

I also get blood tests every 6 months, to keep a eye on a lot of different things in my blood. Everything looked great, which means no medication changes. My doctor, Dr. Beckstead, said I'm a pretty healthy guy. Yea, Me!

Well, that's it for now. Mom is still working on appointments with my Endocrinologist, Neurologist, Podiatrist, and Chiropractor.

Here's pictures of me with and without my glasses. Mom tells me I'm pretty handsome and cool looking with or without glasses. What can I say, she loves me.

Here's a picture of my crooked back with some of my battle scars. Mom thinks I'm one tough and amazing guy.

More January Fun

2010-01-14T10:35:00.000-08:00

Yesterday I went Snowshoeing with my Mom and Common Ground. Kalin was in school all day, and Mario (a new guy we are training) was in Salt Lake. So since Mom knows how much fun I had last time, she agreed to take me. Whoopee!!

We went to Common Ground headquarters in Logan where we were to meet the bus that was going to take us to Mantua, Utah, in Sardine Canyon. While mom was filling out lots of paperwork, I was busy checking out the place. I tested every light switch, knob and lever in the place. I found the switch that operates the ceiling fans and was overjoyed to see them turn. For some reason, someone kept turning them off when I wasn't looking. Then I'd have to go turn them on again!! Don't people know that when I'm in a room with a ceiling fan, it HAS to be ON!!!

Next we got on the bus that was going to take us Snowshoeing. I was so busy trying to open the windows, turning any knob that would turn, or flipping any lever I could flip, that Mom didn't enjoy the bus ride very much. I was just so excited that I just couldn't sit still or keep my hands to myself.

We finally got to the camp ground in Mantua and it was really a nice place. There was LOTS of beautiful white snow everywhere. It took a while for everyone to get their snowshoes on, but then we were off. As soon as we stepped off the road, and onto un-level ground, I put a death grip around mom's neck. She was a nice shade of blue before she succeeded in prying my hands loose from her neck, then she held my arm and we were off. I really like snowshoeing, but not the un-level ground, so I made sure to hold tight to Mom's arm. I think I did good. Mom however, didn't do very good. She'd do good for a ways, then she'd get all off balance, almost falling. She said it was because I'd pull on her and knock her off balance. (Yeah, blame it on the kid that can't speak for himself.) I thought she was so funny....she kept taking off all the warm clothes she was wearing. She said she was hot. 13 degrees and she was hot! Go figure that one. Next she was turning red in the face and breathing really hard. She said it was because she was having to drag me through the snow. I thought it was really funny to kick her in the ankle with my snowshoe every time my left foot would take a step. She didn't like my sense of humor at all. Yes, here we are having a great time, and Mom acts like she is dying. About the last 1/4 mile of the hike, one of the volunteers from Common Ground must have thought she was also, because they brought me a walker with skis attached. It was GREAT! I caught on right away and it made it so much easier for me to keep my balance. Obviously Mom doesn't keep me balanced very well. She tried her best, but after all, I'm as big as she is. Poor, funny Mom, was so tired and sore when we finished. She hardly moved on the bus ride home. When we got home at 4:30 all she wanted to do was go to bed. But I had lots of work for her to do, so she managed to stay up until 7:45 and then went to bed. For some reason I don't think she is going to take me snowshoeing ever again.

Here's a few pictures of our adventure. Taken of course before Mom thought she was dying, so she could still smile.

January's Not So Bad

2010-01-05T20:07:00.000-08:00

I was beginning to think January was the pits. It seems like I've been cooped up in the house like FOREVER. I did go to the movies one day last week and I did go to church this past Sunday and I was very, very good. I really appreciated being out of the house. Right after Christmas, Mom & Dad ended up getting the stomach flu, so I didn't get to get out. Kalin was busy with his family and it snowed a few days and no one wanted to get out in it. So I was really thinking that January isn't such a good month.

However, it turns out that January's not so bad after all! Today was a great day! Kalin and I went Snowshoeing with Common Ground. Common Ground is an outdoor adventure group for people with disabilities. They make it so great people like me, can do regular fun things, by supplying adaptive equipment and helpers. I discovered show shoeing is really fun! I got the hang of it right away but still used Kalin to steady me occasionally as I don't have very good balance. Mom sent her camera with Kalin to take some pictures but something was wrong with it and it wouldn't work. Darn, cause I really wanted everyone to see how great I did and how much fun I was having. I plan to go again soon, so hopefully we'll get some pictures then. Tomorrow, Kalin and I are going to Logan to hang out and do some fun things. Maybe a movie, maybe bowling, maybe the fun center, maybe the mall, who knows, but I plan on having some more fun. Kalin is fun to be with and he likes helping me do fun things. So whatever we decide to do, I know I'm going to have a good time.

Come And Gone

2009-12-31T14:50:00.000-08:00

Christmas was the best!!! I woke up and saw all the presents and balloons (you know how I LOVE balloons!) under the tree. I was so excited!
First Dad gave me all the balloons from under the tree. I thought I was in Heaven! Mom and Dad had to wait for me to pop each one . . . yep, a dream come true.

Then I started opening my presents! It was so great! I got so many neat toys and I had the best time all day long breaking every one of them. Well, Mom did put a few away that I can only play with at church or when she helps me.

And guess what - we even had a little snow for Christmas! Not a lot, but it still looked pretty outside.

Yes, folks, it was a GREAT Christmas and I loved every minute of it. It was a wonderful day! I am still basking in the glow of it all, and am still enjoying all my broken toys.

It's Beginning To Look A Lot Like Christmas - FINALLY

2009-12-31T14:39:00.000-08:00

Well, it took her long enough, but Mom finally put up all my favorite Christmas things. Actually she did it right after the last post, but that was way too late as far as I'm concerned!
We decorated the tree . . .
Hung the stockings . . .

And she put out all my favorite other decorations . . .

It was about time! Afterall I need all this to get excited and to know that it is Christmas time.

Where's Christmas?

2009-12-14T08:19:00.000-08:00

Okay, I see snow outside, Christmas decorations EVERY where in town, Mom's going shopping alot, making a lot of things, working on mailing our Christmas letter, but I see NO Christmas decorations around here! No tree....nothing! What's gotten into her??? Usually everything is in it's place by the first week of December. Somebody has got to have a good long talk with her about this. I WANT MY CHIRSTMAS TREE !!!!!

Life Is Still Great

2009-11-11T16:08:00.000-08:00

Life is still great for Jeff. He is a happy guy and is enjoying life. He and Kalin have been busy doing some fun things. Mom however, has been pretty lax at downloading pictures and posting. Just felt like I needed to post to let you know that Jeff is healthy and doing great. I'll try to get another post in soon and with pictures.

Nothing But Fun, Fun and More Fun!

2009-10-10T10:29:00.000-07:00

Life is so great and I've been having lots of fun. It's cool to get away from Mom for a while and just hang out with a guy. Kalin is great, and he likes doing things I like doing.

In the last couple of weeks we've gone swimming, rock climbing, the movies, bowling, and of course shopping. The Rock Hause is my favorite. We've been rock climbing twice and it is awesome. We went to see Toy Story & Toy Story 2, a double feature in 3-D at the movies. I loved it! I even got to eat popcorn and have a drink during the movie. We went swimming at the Resort and the hot pools are great - really relaxing! We've gone shopping at ALCO, and WalMart. There is so much to see there. I just love to look and touch things. Kalin helps me remember to be careful when I'm touching things. The Bowling alley we went to was fun. It's got cosmic bowling where everything is painted in florescent colors and the black lights make everything glow and move. It's so cool! And of course, I have to look at everything which makes it hard to concentrate on actually bowling. Here's some pictures of me bowling and looking at the lights.

Getting distracted by all the glowing things around me

Setting up my ramp

Waiting my turn

Guys just chilling out

A Lot Can Happen In 5 Months!!!

2009-09-16T19:58:00.000-07:00

My Mom has been REALLY lax in updating my blog!!! I've been so busy all summer having so much fun, that I forgot to keep an eye on her.

First, here is my newest caregiver. His name is Kalin Hansen. He's pretty cool. He's no Clay, but hey, gives him something to shoot for right. I really like him. I'm teaching and he's learning! We make a great team!

He has been working with me for most of the Summer. He has just started classes at Utah State so he only works with me on Monday, Wednesday & Fridays now. We do all kinds of fun things together. Swimming is my all time favorite!!!! I LOVE the water!!!! We go to the park, bowling, the movies, shopping, walking in the community while he teaches me to keep my hands to myself, we've gone to fairs, carnivals, and today we went rock climbing!!!! Man, that was so cool and soooo much fun!! Just look at how cool I am!

Getting started

Here I go

Working hard

At the top!

Life is so great, and I'm making the most of it!!!

Mother Nature is Still Playing Tricks On Us

2009-04-09T09:21:00.000-07:00

Mother Nature is still up to her old tricks . . . one day will be a gorgeous Spring- like day, then it will snow for a couple of days. I sure will be glad when she makes up her mind as to what she wants. Doesn't she realize that it really makes it hard for me to get out and do all the fun things that I like doing? After all, a guy like me needs to make plans, and with her flipping back and forth, it's hard to plan anything!! Come on Mother Nature, enough is enough.

I have a new support worker (caregiver) and I'm ready to put her through all my tests (hehe). Her name is Camille Adams and she's really nice, and cute too! She has great feet and hates to wear shoes, so I get to see her painted toes a lot!!! (Everybody knows how I absolutely LOVE feet!) I'm not done testing her yet, so we'll see if she continues to be patient. Mom thinks she is going to work out just fine. We've gone bowling a couple of times and to the movies which was fun. I got to see the new movie Aliens Verses Monsters. It was great and in 3-D! And of course we go to the stores so I can work on money skills and learning to keep my hands to myself. I just always have the compulsion to rearrange everything on the shelves, and for some reason the stores don't like that. Anyway, I just want to start having nice weather every day, so I can enjoy being in the fresh air and sunshine, go biking, walking at the track, canoeing, play at the park, and most of all SWIMMING!!!

Here is a picture of me and Camille. She's pretty cute huh.

Mother Nature Is NOT very nice!!

2009-03-23T10:18:00.000-07:00

We've had beautiful weather all last week. It has been so sunny & warm that I got to go to the park two days last week to play. Friday I went to Logan with Mom & Grandma and once again it was a gorgeous day. All last week was so great. We got to open the blinds and windows and could look out at parts of the lawn turning green. Spring had definitely arrived in Riverdale, Idaho.

Then Mother Nature played a cruel trick on us! Here's what we woke up to this morning.

And it's not done yet. It has snowed more since the above picture was taken. And it is suppose to snow until tonight, then we get rain. Mother Nature is so cruel.

I'm spending the day inside watching the guys put down our new wood floor in the dining room. I kept getting in their way so Mom brought me upstairs to play a game on my computer. I'm having a good day, but sure wish it was a sunny, warm day so I could go outside and play in the sunshine. Oh well, I'll just have to be patient, it will come.

My Trip To Texas!!!

2009-03-15T19:51:00.000-07:00

I had a GREAT time on my trip to Texas! I loved flying in the airplane and mom kept telling me what a good traveler I was. Yes, I was . . . I can't imagine what she was thinking I was going to do?

I loved seeing my brother Dave & his family and my sister Kelly and her family. I love my nieces and my nephews, they are all so fun and nice to me. Here are some of the fun things I got to do:

This is me waiting to board the plane. I got to be the first one on the plane!! How cool is that!!

We went to Houston, Texas first to see my brother Dave and his family. Here is a picture of them.

Here is a picture of my niece Shayla on her baptism day. Isn't she beautiful!! And she is sweet and kind to me too. She even gave up her bedroom so Mom, Dad and I could sleep there. Thank you Shayla.

Here is a picture of me laying on their trampoline. Because I don't like to jump on trampolines, Shayla would make me bounce and I really liked it. I got to go swimming in their swimming pool too, but silly Mom didn't get a picture of that.

Next we went to visit my sister Kelly and her family in San Antonio, Texas. Here is a picture of Kelly & Joe. I can't believe that Mom didn't get a picture of Casey, Kade and Jessica. They were so fun and I had a great time playing with them.

They took us to go see the Alamo. It was a cool place.

Here is a picture of me next to the Wax Museum sitting next to Forrest Gump.

Here I am looking at how they make the wax impressions for the Wax Museum.
/>This is me in front of Ripley's Believe It Or Not Museum. . . a really cool place!

Here is a picture of me in front of the Largest Tire in the world!

I had a great time in Texas. Here is me on the plane coming home. Did I mention that I was a really good traveler?

The trip to Texas was so great, but I was ready to get back to MY house, MY room, and MY bed! Mom took a picture of me right after I fell asleep. I'm in MY bed with all MY favorite things (balloons, string and tape). I'm such a lucky guy! Life is good.

>

Excitement Is Mounting

2009-02-26T08:55:00.000-08:00

The flu bug has bid it's farewell to all members of the Baker home. We were all quite glad to see that nasty guy go.

The excitement is mounting as we look forward to our trip to TEXAS next week. I've told Jeff he is going to ride on an airplane. He goes to the window and looks up and signs 'airplane'. I know he doesn't understand the concept of 'when' so I probably should have waited until the day before to tell him. (He does understand 'tomorrow'.) I've showed him Dave's family pictures and Kelly's family pictures to let him know that is who we are going to see. Princess Shayla is going to be turning 8 and will be baptized and we are so excited to be able to be there for that special occasion.

Here is Jeff at the window signing 'airplane'

Falling Like Flies Around Here

2009-02-20T19:58:00.000-08:00

The good old fashioned "stomach flu" bug has been residing at our house since last Friday. Mom was the first to get hit (naturally). After days of vomiting, diarrhea, & stomach cramps, she was just starting to feel better just as I came down with it. Because I can't throw up, things naturally took the other route. She was kept quite busy for two days, trying to keep my bottom clean & dry so my skin wouldn't break down. It was red and sore but she managed to keep things tolerable for me. I'm already feeling better, even tho I still don't have my appetite back yet. Good thing because Dad started with his turn at diarrhea and vomiting this morning. Mom and I sleep a lot when we are sick. That's just how our bodies react to sickness and I guess we are really lucky. Dad however, can't sleep when he is sick. He is miserable and moans, groans, and complains all day about how bad he feels. Mom sure wishes he could sleep, she's already getting tired of hearing him complain - and it's only been one day. She's trying her best to be patient, kind and loving but she is struggling.

I thought we were getting ready for Spring. NOT!!!!

2009-02-09T10:58:00.000-08:00

We've had some nice weather lately and Mom and I were looking forward to Spring coming. Well, we woke up this morning and this is what we saw....

So Dad went outside to start clearing snow.

It was a bummer morning because our power went out again. I was lost and didn't know what to do. Mom kept telling me the lights were broken, but I still had to try every light switch in the house. Finally she put me in bed with her and we snuggled for a while. Then it hit me . . . I started crying because I just couldn't handle it. I was sure glad when 2 1/2 hours later the lights came back on.

Christmas & New Year's

2009-01-03T18:38:00.000-08:00

Both have come and gone! I had a GREAT Christmas! I loved all my toy gifts. Of course, I had most of them destroyed before the end of the day, but that is part of my loving them. It was a rather unusual Christmas this year because my Mom was really sick. She'd been fighting a slight cold for a couple of weeks, but then she got really sick 2 days before Christmas. She tried to get in to see the doctor, but his office was closed. She spent Christmas morning laying on the couch watching me open my presents. Dad made me breakfast and after I ate, I got my Christmas stocking. WOW, more neat things! I loved it. However, there were no pictures taken, no yummy treats to eat, or Christmas dinner like there usually is. Mom spent the day in bed and the next day (Friday) the doctor said she now had a secondary infection, so he gave her an antibiotic to take for her really bad Sinus infection. She started feeling better on Monday, but then on Tuesday she started feeling worse and was running a fever again. The Doctor's office was closed on Wednesday & Thursday, so on Friday she went into the doctor again. He said it has now gone into her chest and she has Bronchitis. So now she is on yet another antibiotic and waiting to start feeling better.

I've enjoyed my time with her being sick. I do pretty much whatever I want. I've laid around and watched a lot of TV. I've been pretty good to her, by keeping myself entertained. When Dad is around he keeps me supplied with my balloons, tape, string, and M&Ms. I really like giving him orders and when ever he comes to check on me, I always sign a list of things that I want for him to get for me. Yes, I pretty much have it made right now! Sure was a different kind of Christmas and New Year around here though. Ahh, but there is always next year to look forward to!

Morning Surprise

2008-12-13T09:49:00.000-08:00

I woke up this morning (5:30 AM) and it was dark outside and it was dark inside. I tried to turn my TV on but it wouldn't work. So I got up and tried to turn my bedroom light on. It didn't work. Then I opened my bedroom door and tried to turn the hall light on. It didn't work. I tried every darn light in the house and not one of them would work!! So I sat on the couch in the living room, in the dark, just plain dumbfounded. Mom got up and was using a flashlight to look for me. When she found me, she told me the lights were broken (no power). Dad got up and built a fire in the fireplace while Mom got me a blanket (we have electric heat) and then put out our battery powered lanterns. It was nice just sitting there watching the fire and the shadows. Dad however, was going crazy. He couldn't use his computer, he couldn't watch TV, he was totally lost! This was all quite a surprise this morning. But the BEST surprise was when it got light enough to see outside, we saw SNOW, lots of SNOW!!!

Last night we went to our Ward Christmas party at Church. I had a great time, and I was excited and happy because I got to see Santa Clause! After all the little kids had their turn, I got to sit on Santa's lap. He likes me and I really like him.

All my favorite Christmas decorations are up, my beloved Christmas tree is up, my TV and all the lights work, and there is much SNOW outside. Ah yes . . . It's beginning to look a LOT like Christmas around here FINALLY!

Uhh . . . let me think a minute, balloons, string, tape, you know, all the good stuff.

Jeff the Rock Climber

2008-11-04T20:03:00.000-08:00

Yeah, you heard me right. I went rock climbing today!! Man, it was so much fun and I had a great time. Clay and I went with Common Grounds (a recreational group for people with disabilities, from Logan, Utah). They have all kinds of adaptive equipment for people like me to use, so I can do things I might not otherwise be able to do. We went to an indoor climbing place called the Rock House. At first I didn't really know what to do. But after a while, I caught on and there was no stopping me. I made it all the way to the top - about 75 feet up!!! Boy was I tired when we finished. I can hardly wait to go again! ME, ROCK CLIMBING!!!!! I was so proud of myself.

Halloween Fun

2008-11-04T19:47:00.001-08:00

I had a GREAT time on Halloween! I dressed up as a Chick Magnet and everyone really liked my costume. Mom & Dad went with me to the 'trunk or treat' at Church. I got lots of candy and had lots of fun there. Then we went to visit Arda Smith. Her house is the best in the world during Halloween. Everyone goes to visit her on Halloween because she goes all out decorating her house. (Well, she's 88 now, so her kids and grandkids do all the decorating for her.) It takes them 2 weeks to put everything up. Sorry we didn't get a picture of her house, but here's some of me as a 'chick magnet'

Front view

Front view

Back view

The Pumpkin Walk

2008-11-04T19:41:00.000-08:00

Clay and I went to the Pumpkin Walk in Logan. I had lots of fun. Here are some pictures of me being silly.

Dad The Builder continues . . .

2008-11-04T19:14:00.000-08:00

A couple of days after the last pictures were posted, Mom, Dad and I worked on the shed again. My job was to sit in a chair and 'supervise'. Mom's job was to keep her mouth shut, hold the panels, and let Dad yell at her. Dad's job was to build and be boss. He does both of these things very well, as he's had lots of experience. At the end of the day this is what the shed looked like.

The next day, Dad, put the roof on the shed. And this is how the shed looks finished!

Dad The Builder

2008-10-21T20:18:00.000-07:00

Hey guys, I thought you'd like to see what Dad is building. He bought this kit to build a shed waaay back when...like the beginning of Spring! Well, he's been working on it for the past few weeks. He opened the box, then put it away. A couple of weeks later, he graded a nice spot to put it using his big tractor. He covered the ground with plastic, then built the floor frame and then the floor. Stay tune for the on going saga of 'Dad The Builder'. At this rate, it will be on going for quite some time.Ü This is where we are now:

I love my Dad and he can do most anything. Reminds me of a song that goes like this....
My dad's the smartest guy,
And my dad's the bravest guy,
And my dad's the neatest guy,
It's positively so.
Maybe I'll introduce you,
Then you'll know that it's the truth,
That my dad,
My dad's the greatest guy you know!

.

2008-10-17T14:49:00.000-07:00

Yeah, it's been a long time. Mom's pretty bad about keeping this thing updated! I'm happy to report that she is FINALLY well. Old people take a long time to recover you know. Now me, I bounced back in about a week but poor old mom took about a month.

I've been enjoying all my activities with Clay. He really makes things fun. I do miss swimming though. They closed the Olympic pool for the winter, and it has gotten pretty cold so I understand. Clay got his mission call and is going into the MTC on December 3rd. I'm really going to miss him. It's been nice to have a guy pal to do things with. Mom and Dad are okay, but they're just not as fun as Clay is.

You all probably heard that my Dad got 3rd in his age division (60-65) at Coos Bay. Mom and I were proud of him and he was pleased with his results. He's getting ready to run another 10K in Logan on November 1.

Mom has been asked to be a chairman for a big Humanitarian project at Church that our ward is doing. She is over painting 100 toy cars by mid November. This should be fun . . . I like paint!

Mom got all excited the other day. I got tired of waiting for her to make my pizza, so I got up and did it myself! I got out the corn tortilla, the pizza sauce and the pizza cheese. Then I got a plate, put the tortillas on it, spread the pizza sauce on the tortillas, then put the cheese on. ALL BY MYSELF! I didn't think she'd want me to use the microwave by myself so I just waited for her to come do that. She was so surprised, happy, and proud of me. I was proud of myself too!

Another great thing that I've been doing for a while, is when I want to get Mom's attention and she is upstairs, I click the hall light on as a signal to her that I want her. It works really well, and boy, does she come running. I thought that was pretty ingenious of me. Mom and Dad both are quite proud of me.

Coos Bay, here I don't come!

2008-09-17T19:54:00.001-07:00

Mom, Dad and I were suppose to leave for Coos Bay, Oregon this morning. Guess what!?! I woke up sick and Mom says she's not feeling very well either, so Dad is going alone to Coos Bay. Since Coos Bay is 15 hours away from Preston, Idaho, and Dad won't have me to keep him company on his long drive, he decided to fly. He & Mom have been on the Internet and the phone all morning making all the changes.

Dad is going to Coos Bay to run in the Steve Prefontaine Memorial 10K Run. Mom and I really wanted to be there to watch him and support him. He has some friends that he is meeting there, so he won't be all alone. I sure hope he does well. He's been training and looking forward to this for quite some time. So, GO DAD GO!!

What a GREAT Summer Jeff is having!!!!

2008-07-09T09:57:00.000-07:00

Here's a picture of Jeff and Clay - THE AWESOME DUO! Clay is doing such a awesome job with Jeff and Jeff is really enjoying being with him. They go to the park, the track at the high school for exercise, and are spending a lot of time at Riverdale Resort swimming. Clay has also taken Jeff to the movies, bowling and shopping. Clay communicates through sign language with Jeff and really gets Jeff to sign back . . . real signs, not just lazy signing like he tends to do with me. I've heard from two separate sources that have observed Clay working with Jeff, that Clay is very attentive, and patient with Jeff. Even though Clay was very apprehensive at first, he has gotten to know Jeff and how best to work with his behaviors. Clay says that he enjoys working with Jeff and I KNOW that Jeff enjoys being with Clay. He is always so eager when I tell him Clay is coming to go play with him. We are very fortunate to have someone as good as Clay to work with him. Hopefully we will get to keep him until he leaves on his mission. Then . . . . back to square one.

Such fun!!

2008-05-28T13:21:00.000-07:00

One of the things that I really like to do is ride on the tractor with my Dad. Here's a picture of us getting ready to go do some tractor work. Notice the great chair my Dad fixed up for me. I LOVE IT!!

Healthy At Last!!

2008-05-16T20:12:00.000-07:00

Yes, (knock on wood) the Baker Family is healthy at last! Jeff is healthy and very happy. Bob is doing great and is getting ready to race up the mountain tomorrow. And believe it or not, even I am starting to feel better!

Dennis the guy we had working with Jeff is going to be moving soon, so he had to quit working with Jeff. We were very disappointed because he was so good with Jeff. But as of yesterday, we have someone new to work with Jeff, and I think it is going to work out very well. Clay Kohler, the young man that Bob trained in running for 2 1/2 years is home from college for the summer and he agreed to work with Jeff. He knows sign language which is a big plus. He was a little afraid at first, only because he has never been around Jeff. Yesterday & today they spent time just getting to know each other. Clay took Jeff to the park yesterday where Jeff played on the swings, and slides. He ate his lunch there and then they came home. Clay asked, when he hits me, how do I get him to stop, and what do I do? I had to smile. I told him to sign to him to stop please, then move away so he can't reach you. I also told him to redirect Jeff by getting him interested in doing something else. Today they went to the high school track and walked four laps together. Clay said it went really well. Jeff actually had fun and laughed. I feel good about Clay and feel this is going to be good for Jeff. Jeff hopefully feels like he has a new buddy and I'm sure he enjoys being away from Mom and Dad for a while each day.

No Fun Being Sick

2008-04-01T10:29:00.000-07:00

Jeff has been sick for the last week. I took him to the doctor and he has an upper respiratory infection. Bob has it too, so they are both on antibiotics. Jeff has such a horrible cough so the doctor prescribed Histinex HC and that helps somewhat. I'll be glad when he gets well as I've never been coughed and spit upon so much in my life. He's been a good little guy, naps a lot and his appetite has decreased, but all in all he is weathering it well. Wish I could say the same for Bob. He does nothing but grip and complain about how sick he is and how miserable he feels. It certainly would be nice if all three of us could get well!!!!

Self Direction - FINALLY!

2008-03-17T13:26:00.000-07:00

As of March 1st Jeff's Self Direction program was approved!! I can't believe everything we've had to go through to make this come about. Gee, it only took A YEAR!!! The paper work was and is endless. This program is supposed to be all about the individual . . . well, after months and months of red tape and paperwork, we've finally gotten to the point where it can be about the individual - Jeff. Last Friday Jeff's recreation therapist, Dennis Cox, came to take him swimming. I know Jeff had a good time. I don't know about poor Dennis though. Jeff broke a toilet lid in the bathroom of Sports Academy. I'd warned Dennis about having to watch Jeff closely in the bathroom, especially the toilet lids. He said it was his fault and he'd not make that mistake again. Other than that, I guess things went well. At least he didn't quit. Dennis said he wishes he could communicate better with Jeff and I assured him that would come. I am still looking for 2 or 3 other people to work with Jeff. This is a slow process and I'm constantly being taught patience.

Jeff's Medical History - For Doctors

2008-03-17T12:54:00.000-07:00

Medical history for Jeff Baker
Edited August 2011

EARLY HISTORY:
Jeffrey Wayne Baker was born in Hoag Hospital in Newport Beach, California on August 8, 1984. He arrived 6 weeks early, weighing 6 lbs. 13 oz. As soon as he cried, I knew that something was wrong. His little cry was very hoarse, as if he had something in his throat. The doctor said not to worry, that he probably just had some mucous in his throat and they'd take care of that and things would be fine. When they tried to place the catheter down his throat to suction him, it wouldn't go down and they knew there was a problem. While I was still in the recovery room, a team of doctors came to tell me what was wrong. He had a Tracheo-Esophageal Fistula (TEF)and they proceeded to draw me a picture. Basically, his upper esophagus ended in a blind pouch and didn't connect to the stomach. His lower esophagus was connected to the lungs instead of the stomach. They said they would transport him immediately to Children's Hospital of Orange County (CHOC), where he would under go surgery to repair the problems they'd found. They assured me he'd probably be home in about 2 weeks. Thus began our long, emotional roller coaster ride and the beginning of a life-long learning experience. The repair of the TEF was just the beginning of many surgeries to come. Just as he'd recover from one finding, they'd find something else wrong. His doctors said that children born with the anomalies Jeff had usually go home in about 4 to 5 months, but those having all the complications Jeff ended up having, never go home at all. He amazed his parents and his many doctors with his strong will to live. He was such a little fighter!! Then finally, after 10 months, 4 days, and 11 surgeries, he came home for the very first time, supported by an assortment of tubes and machines. We felt so very blessed to have him home at last. When he was 11 months old he was diagnosed with a rare syndrome, called CHARGE Syndrome.

CHARGE Syndrome refers to children with a specific set of birth defects. 'CHARGE' originally came from the first letter of some of the most common features seen in children with this syndrome.

C - for coloboma and cranial nerves
H - heart defects
A - atresia of the choanae
R - retardation of growth & development
G - genital and urinary abnormalities
E - ear abnormalities &/or hearing loss

(*Please see link below for more information on CHARGE).

Some of Jeff's other birth anomalies were:
Tracheo-Esophageal Fistula (TEF) W/ Esophageal Artresia which was repaired twice. He also had Tracheomalacia and had a trache for 3 years. He had very bad Reflux and feeding problems, which required a Nissen Fundo surgery. He had Villious atrophy of the small intestines and malabsorption problems necessitating a G-tube. Because of the problems with leakage and a poor nutritional state, they would change the location of the G-tube site occasionally. At one point he had a J-tube. Unfortunately, one of the metal wings holding the J-tube in place perforated his intestines and he filled with peritonitis. Doctors removed part of his Gall bladder and 4 inches of intestines to fight the infection. This was probably the sickest he'd ever been and he was not expected to live. But our tough little guy fought hard and pulled through once again. Jeff was 6 yrs. old when his G-tube was finally removed for good. The tissue granulation was so bad, it needed to be surgically closed. He has a right unilateral Choanal Artesia - which means he can only breath through one nostril. He has microphthalmia and a Coloboma in his left eye that involves the optic nerve. He has Cranial Nerve Dysfunction – lack of smell, mild facial palsy, sensorineural hearing loss, swallowing dysfunction. He has Genital Hypoplasia – cryotorchidism, and delayed pubertal development. He had a bilateral orchiopexy for his undescended testes when he was 6 years old. In 2001, because we were concerned about him developing osteoporosis, and because the bones thicken during puberty, we agreed to Testosterone injections, which he received for 8 months. This promptly put him into puberty. For the benefit of other CHARGE parents, I must add a personal note here. I wish we would have never used the Testosterone. Not being in puberty didn't bother Jeff in the least, in fact, he didn't know the difference. Reaching puberty was something that he nor we needed to deal with. It escalated his behaviors and we now deal with acne, shaving, and much pubic hair in the diaper area. Jeff is oblivious to all this of course, and it makes personal cares much more involved. He has upper body hypotonia, sloping shoulders, a short, webbed neck. He has low set, small, misshapen 'CHARGE' ears. He is profoundly deaf bilaterally. He has had many sets of ear tubes thru the years. He has the typical 'CHARGE' face – square, asymmetric face, flat cheekbones, wide nose with broad nasal bridge and small, protruding chin. He is very fortunate that his heart problems are minor. He had a Congenital Heart Defect – PDA at birth. He has a right aortic arch instead of left, but all valves and chambers are normal. He suffered Grand Mal seizures until he was 6 yrs. of age but has had none since.

RECENT HISTORY:
Jeff does have the random mutation of the CHD7 gene which confirmes that he has CHARGE Syndrome. He is 27 years old. He is currently in good health. At 5'3" he is small for his age, but consistent for a CHARGE person.. He weighs 125 lbs. He is profoundly deaf bilaterally. He is non-verbal. He has no usable vision in his left eye because of the Coloboma. In his right eye his vision is 20/400 with a small cataract and astigmatism. He is legally Deaf/Blind. He is mentally and multi-sensory impaired. He has been diagnosed with Autism (however I feel he is only ‘autistic-like’, as are most deaf/blind individuals), Pervasive Developmental Disorder, Obsessive Compulsive Disorder, and Tourretts. He also has Sensory Integration Dysfunction. He is tactile defensive and has Proprioceptive issues. This is all under the CHARGE umbrella. Jeff communicates with sign language and a picture system. His expressive language is there; he just doesn’t initiate communication often. He has a large receptive vocabulary but does not understand concepts. (Therefore he cannot tell us if or where he hurts, if he is angry, scared, etc.) He walks slowly and with an abnormal gait. He has difficulty walking on un-level ground due to his vision and vestibular issues. He cannot walk longer distances as he tires easily, due to his small lung capacity. Although his functional assessment is on the low side, he does have some splinter skills. He loves numbers and can add, subtract, multiply and divide 3 digit numbers. He enjoys using the computer and can read at about a second grade level. He can take ANYTHING apart, and usually does! Jeff also has Pica. He will eat anything small enough to go in his mouth. Toilet training is an on-going issue.

In September 2001 he was diagnosed with Celiac Sprue Disease. Therefore he is on a gluten-free diet. At the same time he was also diagnosed with acid reflux with mild esophagitis. In October 2001 due to his self-abusive behaviors, Jeff was placed at Idaho State School and Hospital in Nampa for behavior medication management. While residing at ISSH on June 3, 2002 he had Scoliosis surgery with spinal fusion and rod fixation from T2-L4. This was done at St. Luke’s Hospital in Boise, Idaho. Three weeks later he developed a staff infection and had surgery for debridement. He did well for four months and then two spots on his incision opened with green drainage. October 21, 2002 he had surgery again and the infection was drained, debridement and irrigation was done. Hardware was left in for stability until fusion incorporates. Cultures showed Staphylococcus aureus. On October 25, 2002 a Porta Cath was surgically implanted for the long-term aggressive intravenous antibiotic treatment he would receive. He was treated with 1.5 gm. Cefazolin IV Q 12 hrs. and 600 mg. Rifampin orally. He returned home in December of 2002 where his parents continued his IV treatments until February 17, 2003. Lab results showed the infection growing so it was determined that the hardware needed to be removed. On February 17, 2003 he had surgery at St. Luke’s Hospital to remove the rods and hardware. He was treated with 1 gm. Vancomycin IV Q 12 hrs. and 600 mg. Rifampin orally 2 X daily until April 4, 2003 when both were discontinued. In September 2003, Jeff was diagnosed with osteoporosis. In December of 2004 his Porta Cath was surgically removed. In May 2004 blood tests revealed Jeff had low thyroid and iron levels. On May 11th he was started on Synthroid 0.05 mg and has done well at that dosage. The iron deficiency is no longer a problem. He currently has blood draws every 6 months to check valporic acid levels because of the Depakote he is taking. In May 2006 Dexa Scan showed increase in osteoporosis and he started 150 mg. of Boniva, taking it once a month. In 2010 we discontinued the Boniva and he started getting Reclast infusion once a year. Jeff’s scoliosis was monitored every 6 months by his orthopedic doctor, until just recently when the doctor found that his scoliosis was no longer increasing.

CURRENT MEDICATIONS:
Prevacid 30 mg – for reflux; Depakote 250 mg, (750 mg in AM, 750 mg at noon and 500 mg in PM) – for behavior; Levoxyl 0.05 mg (generic for Synthroid) Docusate 100 mg – stool softener daily; and Celexa 20 mg. – to help with sleep. Reclast Infusion - once a year - for osteoporosis; Two Tums daily for added calcium. He also takes a multi-vitamin and 1000 mg Omega 3 fish Oil capsule daily.

ALLERGIES/SENSITIVITY:
Environmental allergies - Medical tape adhesive.
Food allergies - Gluten due to Celiac Disease.
Drug allergies – Codeine – hypes him up

Jeff has a cute personality, a fun sense of humor, is very active and inquisitive, and is a very happy young man. He loves things that vibrate, spin, light up or flash. He loves using tools and working with wood. We do have to watch him closely because he eats screws, bolts, nails, or anything else he thinks is interesting. He loves making creations from string, tape, balloons, and any toys he see fit to use. Another thing he truly enjoys, is putting spit-wads on any mirrored or glass surfaces. (Although they are quite intricate, I personally, do not appreciate this particular talent of his). He is a very hard worker and will not stop until he has completed what he is doing. He is also a perfectionist at what he does.

Jeff graduated from Preston High School in 2005 and is currently on the Idaho Self Direction program. I was hoping that he would be able to attend a sheltered workshop but that didn't happen. Jeff is still needs one-on-one support, and the workshops are not equipped for that. Jeff did the jobs wonderfully - putting together trophies, sorting tiles, sorting envelopes to be mailed by zip codes, and folding shirts that have been silk screened. He catches on very quickly, but his behaviors keep him from going there. He wants to eat the nuts, bolts, etc. and for his safety, needs a one-on-one aide. So his behaviors are one of the things we work on and our long term goals is to have the behaviors under control enough so he might be able to work at a sheltered workshop or a part time job within our community with assistance. Routine is very important to Jeff and he functions best when he knows he has a set routine. We and his Support Workers work to give his that consistency. We also work hard to keep him active, involved in things that he enjoys doing, productive, fulfilled, loved and happy.

As Jeff's Mom, I feel so very blessed to have this choice young man to love, care for and serve daily. He is a delight and has been my greatest JOY and CHALLENGE rolled into one terrific young man. Jeff has touched more people and overcome more in his short life than most people do in a lifetime. What an example and inspiration he is. He is my mentor, my hero, my teacher. I truly believe Jeff is one of those special spirits that was sent here just to teach others. I know he certainly has taught me what's most important in this life. He has taught me so much and continues to do so daily. Because of Jeff, and wanting to help him grow to be the best he can be, I feel I have probably gained the equivalent of an honorary degree in medicine, education and law. At times it's been extremely hard, and at times it's been much easier. But I can truthfully say, it's been worth every tear I've shed, every ache in my heart, every fight I've had to fight. The smiles, the laughter, the love, and the strength of my son have made it all worthwhile. I am so grateful and thankful to my Heavenly Father for the blessing of this choice young man!

***As one of the many doctors that work with Jeff, if I as his Mother, make a suggestion to you or have a concern, please listen to me and hear me. I know Jeff better than anyone. I've also lived with him and CHARGE Syndrome for 27 years, and YES, even without a medical degree, I probably know more about CHARGE than you do. I won't tell you how to do your job but at the same time, I expect you to listen and take what I say seriously. Thank you.