Excuse the mess!

Hello all... yes, it has been a while.

I am in the process of uploading a new layout that I have been playing with for 4 hours. As you can tell by the time, and the way this all looks -- I was NOT successful.

I am off to bed, bare with the horrid look, and hopefully I can start the new year off right with an updated blog design and photo of Gavin.

Lots to share, can't wait. ;)

Thumbs up for Snuggle Wraps!

I'm bummed I don't have enough time to do posts daily. I really want to document everything so Gavin can read this one day. This is just a trying time with his eye poking, and I honestly do not have enough time to do anything. The past few weeks, I have asked family members to take Gavin for a few hours here and there, honestly just so I can clean. I have noticed when he is out of his comfort zone, his eye poking/gouging is much less. Has anyone else encountered this? I'm thinking it's because he is in a different environment and he has other things to concentrate on, rather than the normal busy house we have here, and the sounds he is used to hearing everyday. Whatever it is, I am glad they don't have the challenge of constantly releasing his hands out of his eyes, this way, they can continue to take him and I can get an hour or two of cleaning, and maybe even an hour to blog or even start exercising again (something this past year I have completely neglected and honestly haven't even cared about). I know that's bad to say, but the truth. I need to get back on track with everything in my life.

That all being said, I broke down and I purchased the Snugglewraps arm restraints. I was in tears purchasing them, the thought of restraining Gavin made me cry. Honestly, they have really helped. For all you parents out there who deal with an eye poking baby/toddler, I'm sure the car rides have you stressed out. I realized, even a quick trip to the bank can be about 20 minutes in the car. That entire time, Gavin is poking his eyes, and I'm stressed seeing him in the car seat doing this and trying to stop him. It's not safe, and not good to add to the stress. These arm restraints are so HELPFUL for car rides. They are a must, and I think I am going to buy another pair to keep in Troy's truck. At home, they help when he is swinging or jumping. He is still getting vestibular stimulation but he is not pressing. I feel better putting them on when he does these activities, rather than when he is just on the floor playing since they really do restrain movement. I am able to throw them on, put him in his jumper and I can use the bathroom or grab a quick bite to eat. I have been caught in a nasty vicious cycle of stopping everything in my day to just be the eye poking police. This has helped when I need just 10 minutes to do something. If you have any questions, let me know. I highly recommend them!

Also, our Thanksgiving Dessert in the dark was a hit! About 20 members of the Bohannan clan experienced this. We all sat around the dining room table, shut off the lights and Troy and I served everybody. We had 3 different pies, and we sliced and served one serving at a time. We took it to the end person, told them what pie it was, and they had to pass in the dark to the appropriate person. It was awesome! I think everybody was able to experience Gavin's world and your different senses come into play. Some mentioned the different feelings of the forks, and the tastes of the pie when you are not looking at it. We even had some whip cream mishaps with my aunt and my sister, so we got some good laughs in too! This will be our new Thanksgiving tradition, and I am so happy and proud to be part of such a wonderful family who has embraced my son's condition to take on this experience with us.

Dessert in the Dark and a thank you!

Happy Thanksgiving to all my blog friends. I have "met" many wonderful people whose situation is similar to our families thanks to this blog. I have also "met" many kind, people who continue to give their positive comments. Thank you to all of you!

We will be starting a new tradition and will be eating our Thanksgiving dessert in the dark. We will be bringing Gavin's world to us on this special day. I have so much to be thankful for, but I am especially thankful for my sight, which I have always taken for granted. I see things in a different way now, thanks to my son. And the world is a lot brighter!

Happy Thanksgiving to you and your family.

Thank you for all your support.

You mean a lot to us!

xoxo
Stevens Family

Paying it forward

Last night, I had the pleasure of speaking to Ethan Haas, the father of Corey Haas. Corey is the little boy mentioned here in the blog that is the youngest in the world to have received gene therapy and vision restored.

Ethan found my blog and reached out. I went to sleep last night with a much better understanding of not only the procedure, but of the the key names of doctors, research scientists, etc involved in the gene therapy. He mentioned Corey is now playing Little League, and does not need to use his white cane. Many times during our conversation I was moved to tears. The family has hit the nail on the head, and they want to help others just like Corey has been helped. They have helped me gain a better understanding as well as offer a deeper sense of hope for our future. They are now recruiting candidates possibly as young as 4 years old. This is a HUGE change from just a year ago, when I believe the youngest candidate was a teenager or young adult.

We are going to move even more quickly with getting Gavin's blood work done. I see a need to do this sooner rather than later. Just so we know what path we are on with the identified gene. We still do not know what gene Gavin is affected by.

Thank you Ethan. Thank you Haas family for sharing your wealth of knowledge and your son's story not just to me, but to the world. I appreciate your pay it forward attitude, that's what this is all about. Helping one another.

Eye pressing to eye poking

Gavin's eye pressing has moved to a whole new level. I knew this day would come, but I thought it would be later, and hoped deep down inside it never would come. Along with the fists in his eyes and pressing down on his eye sockets, he is also getting his index finger and pressing on top of his eyelid on top of his eye, and pressing back, deep into his eye socket. Almost as if he is gouging his eyeball out. It is done with force, and the first time I saw him do it, I broke down in tears. In the back of my mind, I had been watching out for this, and when he did it, and got a new sensation, I knew it would be another level of habit to try to break.

I think I have stated before, my days are dependent if it's a good or bad eye pressing day for Gavin. If it's bad, then almost all of my list of to do's are written away, and my agenda for that day is to keep his hands occupied and out of his eyes. At times with mild restraint, and I know that sounds barbaric, but at times it is needed. Today, is a bad eye pressing day. A bad eye poking day, and I am just now getting my break to shower and eat since he has just laid down for a nap. I am exhausted.

I think we will be moving forward with purchasing the rec specs/goggles and the snuggle wraps.

Just another little affirmation to those parents out there who are going through the same thing. I know in the end it will all be worth it, but I feel your pain and your exhaustion.

Don't give up, I know at times I want to because it's easier to just let him poke.

Hang in there. I'm trying to.

Funny Five year old

Funny things said/done the past week or so with my 5 year old, Landon. I wanted to document for me, to remember -- but thought I would share with you as well.

3. I was asked if Santa was real. *insert crying face* I did my explanation and further asked if we can make a trip to the North Pole. He said if we got in the car and started driving where it said "N" we would be there really fast.

* The "N" he is referring to is the digital display in the car that tells you which way you are going, North, South, etc.. It's that easy, right?

2. Landon asked his dad if King and Queens and castles were real. Troy answered, and Landon asked asked in surprisement (with wide open eyes) "Do the Jacks and Aces live there too?"

3. I told Landon it would be fun as a family if maybe we got a karaokee machine for Christmas, as our family gift. He replied, "No, that wasn't on my order." "Order?", I ask in utter surprisement, but knowing where this was going. "Yes", he said. "My order to Santa is already done, and I didn't put the karaokee machine on the list".

* Um.. hello!?! ORDER? I wanted to ask him what his method of payment was.

10 things

I had 2 emails sent to me to repost this on my blog... so here it goes. I think it's pretty boring, but fun, nonetheless. Let's see what is on the top of my head of 10 things you may or may not know about me. This is a little out of my element since this blog is for my boy/family -- but hey I will give it a shot.

1. I don't eat meat, but don't consider myself a vegetarian. Weird? Yeah, I just say, "I don't eat meat"." I haven't for about 16 years.

2. I think a sandwich is a waste of time if the bread is even remotely on the road to becoming not fresh. The same with chips and salsa. You can have the best salsa, but if the chips aren't any good -- waste of time. Bring on the lard and some good chips! lol

3. I don't like leaving my kids. I enjoy being around them all the time, and relish in every moment. Yes, I need a break from time to time, but I choose to always be with them. I know these days will only be memories one day.

4. I LOVE going to the movies. I don't care how expensive it is now, I am a happy person at the movie theatre. I think that is what I miss most about having kids and not being able to get up and go and make my 2x week trip to the movies.

5. Inside I truly feel like an old soul. I feel like I should have been born in the 1800's, I get such a nostalgic feeling when I look at pictures, etc... from that era of time.

6. I secretely miss my maiden last name as my last name.

7. A few years ago, a little boy named Anthony came into my life unexpectedly at the mall. I still carry the sorrow, and helplessness as he lay dying in my arms. I kept him alive until help arrived, only to have him pass away 12 days later. The reason, CPR performed too late -- I always have the "what if" nagging at me when I see little boys his age. What if I helped him quicker, what if I yelled louder at the people around who stood to stare, and not help...

8. Komodo dragons and cockroaches make my heart skip a beat in pure, utter fear.

9. I very much dislike hospitals, and have passed out before from pure panic being in one. Along those lines, giving blood can have me on the floor as well. When I was pregnant with Gavin, since there was so many problems w/ the pregnancy, I was giving blood 1x week to check my hormone levels. Troy and I would drive 40 minutes to visit this ONE nurse who knew how to draw my blood without having me pass out. I would call before to make sure she was on shift. Wack - O! lol

10. Always wanted an "outie" belly button when I was pregnant. All I got was a deeper "innie", it looked like I had a doughnut under my shirt.

I hope you try it, that was interesting! Post 10 things about yourself that you may not think others know. Let me know, so I can check it out. ;)

Love Disney

I think this is pretty cool. We are Disney freaks, and it's so nice they are making this an option for visually impaired. I'm sure this is a start to many more accomodations.

Happiness and the choice to choose it

Your success and happiness lies in you.

Resolve to keep happy,

and your joy and you

shall form an invincible host

against difficulties.

- Helen Keller

I have said this before, I am always moved when I read Helen Keller's quotes, and really try to understand what point she is trying to convey. This is one that really hits home. My happiness here in my home for my family, lies within me. Regardless of the trials, if I strive to be happy, if we strive to be happy, we will be. I truly think happiness is an innate force we are all given when born and something we strive for subconsciously. It's a conscious decision however to live your life, happy. We can get be led astray with life's difficulties, throw our hands up and cowardly have our pity party (trust me I have done that). We can lose focus, play the victim, and allow adversity to get the best of us and lose our destination. The day to day shuffle, the pressure of finding balance between family, work, obligation, life can become overbearing and unweildly. However, if we choose to continue to stay on the path of happiness, we will not get lost.

For a while, at the beginning of my learning time (that's what I like to call the phase right after getting Gavin's diagnosis), I did not want to be happy. Sure, I would say I wanted to be, but I did not want to be happy. I did not want to be happy with the news I was given, our new life with our son and a disability I knew nothing about. Being happy meant I was accepting it. I did not want to accept it, you can read that about here. But now, after the acceptance, comes happiness. I am naturally a happy, see the glass half full type of person. I went off track a little with my pursuit of happiness, but it was always inside. It was my choice to choose it. For a while, I did not choose it.

I hope you realize it is a choice to choose happiness. Whatever it be, defined only by you. Not by society, not by a measure of success, not by your peers, not by things, but by you. Our days are numbered, our life a blink of time. Find your joy, define it by your definition and choose happiness. Our life with Gavin, is a much happier place than 365 days ago. This time last year, I was confused with my inner turmoil that something is wrong with my child, and feeling like noone else shared my torture. Today, we are happy, I am happy and our choice to live our every single day full of happiness, is a choice we will continue to make.

I hope you do the same, life is so much better making the choice and knowing it is an option.

Disclaimer: Just speaking from my heart, and my experience. I know life throw some pretty scary, sad times at us. Not meant to put an easier-said-than-done overtone on this. Just looking back and sharing what I have learned through my sadness.

Understanding

I'm having difficulty uploading the video, so I will just add the URL here so you can link to YouTube to view it. There was a lot of buzz last week about Corey Haas. He was on Good Morning America, explaining the gene replacement therapy he received. He's 9 years old, has LCA, and was involved in a study that left him with sight. It's pretty inspiring, hopeful as well as emotional to watch this. We all know, my hope is for my son to one day have some vision. I cannot but help to put myself if his mother's shoes. I also cannot help to think that may one day be Gavin.

As I watched this, with a very heavy heart, the only thing I can think of is "we are on the brink of something amazing happening, sooner rather than later." The articles I have read 8 months ago, compared to what I have recently been informed of, just in those short few months I have seen progress. Whether it be more awareness, or younger participants, etc. Maybe I am just more aware, but the momentum is continuing, and I will do my best to raise awareness in my little corner of the world.

Let it be known. Gavin was created by God, just the way he is. I love him just the way he is, I accept him as he is, I treasure him. Just as he is... which is perfect. I have said it before, I will NOT let his vision impairment hinder him from being the best person he can be. I also will NOT let it define who he is. He is more than his disability, it is only a fraction of who he is. These are words I have said many times, but they are so true. His world, his life, is not any less meaningful than any of ours, just because we do not live in the darkness he does. One day, this gene replacement therapy may be the norm. I have to prepare myself with the reality that he may choose NOT to have it. I will respect that and we will continue on.

I speak so highly of gene therapy, for one, I am in complete awe with what researchers, doctors, etc.. are capable of doing. And, two... to give someone sight, I am just speechless. I am speaking from a parents view point here, and not someone who lives with a visual impairment. I know there are two different views on this topic, and some of those views, honestly, are quite shocking. It just shows how much I am learning, and how you truly cannot judge one's position in life without living where they have. There are people who live with a visual impairment, who accept the impairment, and do not view it as a hinderance, or as something they would want to change. On the other side, you have those who would jump at the chance to see a little bit more. Of course, for my son, I am on the side who would go to great lengths to do whatever it takes to give my son more vision.

I will also sit on the other side with him, if he one day chooses not to go forward with therapy, if he is so given the chance. I hope to one day have this be an option for him, but I have learned, what I want more than anything is to understand. I want to understand his perspective. I will always respect it, but would love to understand. I'm sure he will show me, he already has, and I am going into this with a complete open mind, letting Gavin and God guide me down this road.

As a parent we want to fix, fix, fix our child if we can. Fix the broken bike, fix the scraped knee, fix the bump on the head, fix the blindness.

Now as a parent with a child with a vision impairment, all I want is to understand, understand, understand. In my eyes, Gavin does not need to be fixed. He is just as he should be. Would I like him to see more? Definitely. If he chooses to make that decision not to, and old enough to make that decision, would I support him? Definitely. He is who he is, just as he is.

And I will understand.

Aww man!

I tried posting this a few weeks ago, but ended up uploading the wrong video - so I'm trying again (finally). I guess I do say "aww man" an awful lot. This is his first phrase, or two words together he has said. He says it now with no problem, on command. It's pretty funny. One morning I was feeding him breakfast, he got a little too happy and knocked the bowl of oatmeal over. It splattered all over the place, including me. I said "Oh Gavin!", and he replied "Aww man!" I about died. It was the funniest thing... here is a snippet I caught a few days later. He says it towards the end.. I'm his mommy and of course I think it's the cutest thing.

I Know

This was written for me by my beautiful cousin, Mary. It took me a few reads to get through its entirety. It sums up exactly how I hope Gavin feels about me. Thank you Mary! I love it, and can't wait to write it up in braille and hang in his room.

I Know

Never think I don’t understand how beautiful you are
Sight is not important to recognize you
I am the one who knows you best by far

I know you are elated with joy
When I hear that melodic sound in your laugh
To hear you makes me the luckiest boy

When I taste the salt from your tears
I know you are scared and confused
But I will try to kiss away your fears

The wonderful scent of your perfume
Fills the air and smells so sweet
I know you have entered the room

I know you best by feeling and touch
Memorizing every curve of your face
You are the one I love so much

I am the blessed and grateful one
To have you to guide me along
God was right to choose me as your son.

Paradox of Time

I'm sure we have all read a version of the below, and many parts sound very cliche. However, there are some points that reflect my past year. I have grown, learned, and changed internally through my trials. I have a keen sense of the importance of life, the moments that my children will carry with them. The realization that "things" truly don't matter, regardless how nice they are. I hope you take a little bit from it.

Paradox of Time

The paradox of our time in history is that we have taller buildings but shorter tempers,

wider freeways , but narrower viewpoints.

We spend more, but have less, we buy more, but enjoy less. We have bigger houses and smaller families, more conveniences, but less time. We have more degrees but less sense, more knowledge, but less judgment, more experts, yet more problems, more medicine,

but less wellness.

We drink too much, smoke too much, spend too recklessly, laugh too little, drive too fast, get too angry, stay up too late, get up too tired, read too little, watch TV too much , and pray too seldom.

We have multiplied our possessions, but reduced our values. We talk too much, love too seldom, and hate too often. We've learned how to make a living, but not a life.

We've added years to life not life to years.

We've been all the way to the moon and back, but have trouble crossing the street to meet a new neighbor. We conquered outer space but not inner space. We've done larger things, but not better things. We've cleaned up the air, but polluted the soul. We've conquered the atom, but not our prejudice.

We write more, but learn less. We plan more, but accomplish less. We've learned to rush, but not to wait. We build more computers to hold more information, to produce more copies than ever, but we communicate less and less.

These are the times of fast foods and slow digestion, big men and small character, steep profits and shallow relationships. These are the days of two incomes but more divorce,

fancier houses, but broken homes.

These are days of quick trips, disposable diapers, throwaway morality, one night stands, overweight bodies, and pills that do everything from cheer, to quiet, to kill. It is a time when there is much in the showroom window and nothing in the stockroom.

A time when technology can bring this to you, and a time when you can choose either to share this insight, or delete it.

Remember, say a kind word to someone who looks up to you in awe, because that little person soon will grow up and leave your side. Remember, to give a warm hug to the one next to you, because that is the only treasure you can give with your heart and it doesn't cost a cent.

Remember, to say, 'I love you' to your partner and your loved ones, but most of all mean it. A kiss and an embrace will mend hurt when it comes from deep inside of you.

Remember to hold hands and cherish the moment for someday that person will not be there.

Give time to love, give time to speak! And give time to share the precious thoughts in your mind.

Hands Down Monkey

I'm not God, nor am I a doctor or research scientist. I cannot fix my sons vision problems. All we can do as Gavin's parents are raise awareness, raise money and promote research.

This is another of our attempts to raise awareness. It's not finished, and is in its beginning stage. Take a peek, and check back for new items. Promoting braille literacy is another one of our areas we will be focusing in on. I believe it opens doors to having a visually impaired individual become more independent.

I will post when new items are updated.

Enjoy!

http://www.handsdownmonkey.com/

Must be my cooking

I knew I should have bought his first cake and not made it.

Back and forth

Part of Gavin's therapy is the swing. It provides vestibular stimulation, which is very important for visually impaired children. He loves it!

...and is a lot of hard work. ;)

Static clean

Just minding my very own business eating my snacks.

I'm not sure how it happened, but apparently, the laughter from winning a 5 foot cheetah at the Fair switched to me and my hair.

My birthday angel

Have you ever had a moment that has literally taken your breath away? Your breathing is actually haulted because you are trying to process a moment that you can't begin to conceive? Words you can't begin to believe?

I have, this year.

Have you ever had a moment when you felt so defeated, because you can't fix something, you can't make it better?

I have, this year.

Have you ever felt so much gratitude from others that your attitude towards mankind and the sincerity of good-hearted people, has changed?

I have. It happened this year.

Has your passion for a cause actually take over and drive you towards an unknown destination, because the journey and impact is worth it?

We have experienced this... this year.

Have you been so saddened that the depth of your heart truly aches. Your body actually hurts and the sound of your cry is different than any other type of cry that you have experienced?

I have, this year.

Have you ever felt grateful for something that has happened to your child, as sad as it is, because you know other parents are holding onto the last living moments with their child?

I have, this year.

I have questioned everything, and at the same time relinquished all my questions to someone who has the answers. My faith, my heart, my soul has been changed.

I am a different person and changed for the better, all because of a little boy.

All in one year.

20 months ago, I was ecstatic to learn I was pregnant with you.
18 months ago, I was distraught, I sat in the ER thinking I lost you.
16 months ago, I was worried and hope to one day just hold you.

12 months ago, I was blessed to have you.

9 months ago, I mourned a part of you.
Today, I am thankful for you.

My promise remains as it was the day you were born. I will love you, guide you and help you become the best person you can be. I also promise to enjoy every single moment we have together, and make you smile and laugh. I will teach you not to allow someone else to narrow your soul by making you be unkind to the world, when the world is unkind to you.

It's the least I can do, monkey. I can never repay you for what you have done for me.

I am on this roller coaster sitting beside you in the front seat with your daddy and your brother. Our entire family joined our ride and took a seat, and I can't wait for the next turn...

Happy first Birthday Gavin.

I am so proud to have you, and even luckier to be your mommy.

I love you more than you could ever imagine.

And then some more.

We can all see...

This picture isn't out of the ordinary, however my 5 year old surprises me everyday with his uncanny, mature honesty. This picture was taken a few weeks ago, Landon was on his way out to soccer practice with daddy. Me and Gavin were staying home, Gavin was having a bad eye-pressing day, and was going to stay to put him in the bath to hopefully get him to stop.

Landon walked over to Gavin, and I eavesdropped on the coversation. I'm so glad I did...

Landon: "Bye buddy, I'm going to go to soccer practice. I wish you were going, but that's ok, I'm going to show you how to play and be the bestest soccer player. Remember I love you (he gets louder) SOOOOOO much (then whispers again) I would give you one of my eyes so you can see me play soccer. Ok Buddy!"

Oh hello tears! I'm so lucky to have them both, and they're so lucky to have each other. Landon's been asking again if Gavin's ever going to see. I told him one day he will, that's why we are dedicating ourself to the Foundation and everything we do. He said, "Why because if we do good, they'll give him new eyes?"

(This time, we were driving and I was taken back for a second.)

"No honey (deep breath), but the scientists are working really hard to find treatment to fix his eyes."

"That's ok mom, he sees me. He sees me with his hands, and people who can't hear very good hear with their eyes. Right mom?"

"Yes, honey. We can all see."

Landon glances to Gavin and grabs his hand as he's sleeping in his car seat.

I picked my heart up off the floor, and we continued on with our drive.

I love these moments.

Empty bucket equals happy monkey!

Two posts in one day... I should keep going and FINALLY get the golf pics up from the tourney -- I have been seriously slacking.

Part of Gavin's therapy is to take items one at a time, out of a bucket. We need to work on him putting them back in, but as you can see.... once it's empty - it gets tossed. I love his smile when he knows his bucket is empty. The innocence is so cute.

He's into tossing things left and right. I need to videotape me opening the car door, he tosses his toys, and when I open the door, they come charging at me and I look like a complete fool in front of everyone trying to catch these darn toys. I look like a drunk juggler. Of course this happens when I'm picking Landon up from Kindergarten, and there's a line of parents, already irritated there's nowhere to park, and then there's the drunk juggler taking her sweet ol' time. The trick is to make sure to grab them before they hit the curb and end up in the gutter. We come home with at least one gutter toy a day that gets tossed into the bathtub. Oh the joys!


*Disclaimer*
Apparently talking in high decibels when I get excited counting bucket items is something that is just too tempting too resist.

Firefighter's Fun Muster and Chili Cook Off

We didn't win the chili cook-off, but we had a lot of fun! Our usual Gavin's Groupies of family and friends showed up with their orange shirts to support us. We were able to get some people interested in Vision Walk, pass out information and answer a lot of questions!

We were invited to participate in another chili cook-off in October. I have already perfected our chili recipe, and am out to win. hahaha ;)

Dr. Bill and eye pressing series

As many of you, who are faithful readers (are there really any out there?) know, my huge obstacle right now is the eye pressing (eye pushing, eye rubbing, etc.). Gavin, on some days digs so hard in his eyes, he leaves marks, his eye socket gets bruised, and his eye balls actually get and look very irritated and red, and they start tearing. Beyond that, his eyes appear very sunken, and his face does look distorted. I have been noticing more and more looking back at pictures from just a few months ago, how the shape of his face does appear to look different. I thought it was just me, and he is getting older, so obviously I know facial characteristics begin to grow and appear different and change. Tonight, however, I learned some new facts about eye pressing from Dr. Bill Takeshita. (The story about Dr. Bill is fascinating, he is the Chief of Optometric Services at the Center for the Partially Sighted. He was fully sighted eye care professional, who is now visually impaired).

We had a small conference, and had some parents who had children who are visually impaired (most of them were parents of LCA children), actually I believe all were. Anyway, Dr. Bill discussed some facts about eye pressing. I learned a lot, and thought it was imperative to share and be able for me to look back at this post, and remind myself of a few things.

I realized I need to restructure some things in my life that I have taken on. His eye pressing, has gotten that bad. I am in tears daily. Many times a day. We do our play, and our interaction, and after a minute he's done.

My job every minute, every hour, of every day is keeping hands occupied.

He is getting older, so I don't have this baby on my hands anymore like I did a few months ago. I have a curious beginning stages of a toddler on my hands, who is blind. It's nice to hear other mothers from tonight, even though we have all previously met and discussed this frustration. As a parent with a child with a disability, I am not put on a pedestal, and I did not lose my right to get agitated, irritated and frustrated. I do. I handle it appropriately, but I break down every day. The eye pressing has gotten to that point and that bad. It is haulting some motor skills, because he is totally content to sit in a room and his fists in his eyes. He would be perfectly content with doing that hours on end. I'm not joking. I, however, pull his hands away so we can work (play), he gets irritated, so I redirect him, to get his focus back, and we begin working again, he's over it, fists goes in the eyes, and the cycle continues.

Dr. Bill explained the reason behind the eye pushing (pressing), and as I have previously heard before, they see streaks or glimpses of light when you apply pressure to the retina. This is Gavin's way of "seeing", he is stimulated by the flashes of light you can say. I know there are other theories behind this as well. You can do some damage if pressure is too forceful (which Gavin's is). You can damage the surrounding bones around the eye, and not allow them to grow properly (causing some distortment in the face). You can actually thoroughly damage the eyeball, as well as cause the eyes to be pushed very far back in the head.

What can you do to help this?

We bounced many things back and forth, many great ideas were brought forward. We are going to look into Snuggle Wraps, which my friend, Kris already mentioned to me a few months back. As well as REC specs, the goggle type glasses athletes wear. I heard they have cute color ones for children at a Child's View. Gavin, as little (and spunky) as he is, grabs a hold of his glasses and tosses them. The older little ones, I hear are actually getting their little fingers and sticking them under their glasses and pressing. The wraps are for a last resort, but it is something we need to buy for those days when it's really bad and Gavin is doing himself serious harm to his eyes and needs to be restrained for a short period of a time. I know it sounds barbaric, but compared to the damage he is causing his eyes, bones and face as a whole - it doesn't seem like there is another alternative for those moments.

Another thing is the lumination in your home. LIGHT IT UP! Maximize and stimulate your childs remaining vision so they do not get bored and resort to eye pressing (even if they only see light). Suggestions included, paint walls white/off white. Track lighting, torchiere lamps, etc... Even a corner of the room with some poster board that is white and illuminated with lamps to give them their spot in the room where their vision can be maximized, hopefully stimulated, and eye pressing down (make sure light is diffused or you will bleach out the area). You, however do not want the light to be blinding, this will have an adverse effect. You can also use grey sheets, blankets, when your child is on the floor. One of the parents even suggested maybe a type of bracelet that makes noise or has a small bell on it, that reminds them to put their hands down, since it is a reaction for those who do this behavior, almost as if they don't know they are doing it. Other parents suggested reward boards, for keeping their hands down, and a treat for going periods of time, and eventually spanning that time out. Gavin will roll to his tummy and rest his entire head, even body on his fists. Looking back now, Gavin's room is not lit up, his walls are a very neutral beige, the carpet is beige, his furniture is a light wood, etc.... We have some work to do here, and when Dr. Bill was talking about this, I felt like an idiot! I had a DUH moment, like really... I should have known that! It's pretty obvious. I didn't, and it's part of this live and learn, and share attitude.

I applaud all of you who struggle with this. I know Gavin's age is at a very difficult one, he is not walking, so he is not too mobile to keep his hands occupied. I know as he does more, this may diminish for some time, but I know the parents who have children who are older than Gavin, struggle so badly with this behavior. Dr. Bill expressed, it's something you do need to break, and you do need to stop the behavior. That being said, we at home, have decided to restructure things we/I have taken on and I need to concentrate even more time with him, to break this. My full time job is "keeping his hands down" and occupied. My new job will be the same, but coming up with new ideas to keep him stimulated so we break this. Wish us luck, and I wish all you parents the same.

PS.. If you were in on the conference, and I left some info out, please let me know so I can include it.. thank you!

** Here is a great link for home modifications for people who are blind or have low-vision. Thank you Vision Aware!

Makeover

Yes, I need a makeover, but what I'm looking for is a blog update/makeover. Anyone have anybody they can point my direction to get a little updated look and feel to this blog? As we are fast approaching Gavin's first birthday, I think I need to invest some time to appropriately represent his age with his picture. With that, I want a new look....

I did a quick search, and even sent out a few emails for blog design, but not much luck hearing back.

Anyone know of a good blog designer?

Role reversal

“While we try to teach our children all about life, our children teach us what life is all about.”

That's all I got. It can't be more true.

Rant, Rant and more Rant

With this blog, I bring the raw truth. The truth of Gavin, our emotions, as well as the good, happy times. Right about now, what you are about to read is a rant. I apologize in advance, but here it goes:

Dear fellow grocery shoppers,

When my son and I are walking through the store, and you tell me how adorable he is in his glasses, my heart melts (he is pretty darn cute). When you ask about his condition, and I pour my heart out explaining quickly about his blindness - I appreciate your concern. But when you start waving your hands in front of his face, for the mere hope, that in that given second he will miraculously have vision and prove all my words wrong, I don't appreciate it. When I tell you, he sees well with his hands (as you can tell by the endless toys pouring out of my purse as a way to keep him occupied while I do my shopping), and you try to grab his hands (right after I tell you he is very sensitive and does not like hand grabbing), I do not appreciate it. When I tell you his glasses protect his eyes, and act as a deterrent to the eye pressing, please please please don't tell me he is probably just tired, and he is rubbing his eyes because possibly he skipped his nap. Really?

I am the first to raise awareness and am open to questions, even on my darkest of days when I feel like crawling under my rock. When I see you staring at him, I tell Gavin to wave, as acknowledgement. I know it isn't everyday you run across a blind baby. I understand the curiosity, and welcome it. All of you who personally know me, know this.

Just please don't blatantly disrespect my words, as I truly am trying to help you understand. It is unpleasant to be disrespected, and even though he is only 11 months -- he hears you and understands you.

This has been a service announcement from the Stevens Family. ;)

Trading expectations for acceptance

People often say time will change things. I, however, understand you need to change those things yourself. Today, for some reason, I was very nostalgic. I think because we have some kind of confirmation about Gavin, and we are out of this holding stage we have been stuck in for so long. I started sorting through some emotions of the past 11 months, and have realized how much progress I have done. I am going to share with you, my moment, where I think was my absolute saddest, lowest and challenging moment. It was a brief few minutes, but from that moment on, I continued to make baby steps and have come now to a place, where I believe Gavin will be ok and they are not just words that leave my lips to get me through the moment.

This occured when Gavin was 3 months old. We were told to wait until the 4 month mark by his pediatrician before we pursued a specialist. I was playing with Gavin, and I was at home by myself, just him and I. Everyday leading up to this point, every moment I got a chance, I was testing his vision. It was a nightmare. I would wave my fingers in front of his face, test one eye then the other. I was driving myself crazy. I would go back and forth with my feelings. At one moment, I would tell myself I'm overanalyzing and need to listen to his pediatrician. The next, I would be in tears. This one moment in particular, I completely broke down. I had just put him down for a nap when we finished playing. I sat on the couch and began to sob. I then began saying outloud

"Please don't let my baby be blind"
"Please don't let my baby be blind"
"Please don't let my baby be blind"
"Please don't let my baby be blind"

I said this for about a whole 5 minutes continously and with each sentence, I got louder and louder. With each sentence, more sadness was coming over me. Before I realized, I was practically screaming at the top of my lungs and I was on my knees. I was uncontrollable. I was yelling. I was a mess and it was my lowest point. I picked myself up off the floor (actually I crawled to the bathroom), washed my face, and called his pediatrician and told him I HAD to see him.

Little did I know then, that my baby would be blind.

I realized as I was going through my screaming, in the back of my mind, I was hoping God would hear me. It was my way to shout out, that I am not ok with my son being blind. I was no ok with these cards he had dealt me. I was NOT ok with going through my stressful pregnancy, knowing I could lose him at any moment, coming home with, what seemed like a perfect little baby. And, now, you want me to be ok with my son being blind?

I was not OK with it, and that was my way of shouting it to the world. I wanted everyone to hear it, and I felt at the moment, I couldn't stop until someone did.

I am putting myself back in that moment, and I have tears streaming down my face. This is difficult to put myself back in that moment, and I look back realizing how broken I was. I needed to go through that transition point. That was the start of my acceptance, without realizing it. I was defying God and what he gave me. It was an absolute breakdown of my spirit, my soul, and my emotions.

I carry that moment with me. I relive it from time to time, at moments when it just hits you. Out of the blue, I see something, something I know he can't see or touch, like the sky or the sun, and I relive a brief moment of my breakdown. I expose myself to that pain for just a short time, because it's something I don't think will ever leave. It is embedded as part of who I am, and it's a moment that my soul needed to experience before I could truly, really accept Gavin's condition. Not Gavin, but the blindness.

From that point forward, I began to trade expectation for acceptance and as a family we have not looked back. We have had our fair share of bumps in the road, but nothing to make us stop and turn around.

Today, I am ok.
I am ok with our obstacles. I am ok with these cards.

I am ok with my son being blind.

I traded expectation for acceptance and, to not sound corny, it truly has made a world of difference. God did hear me. But, the difference is, I began to hear him.

ERG - complete!

Gavin's ERG was a success. He did great. We started the day with a few bumps, Gavin had a little cold and we were unsure if we were going to be able to proceed with the procedure. He passed his physical, and the nurse cleared him, but the anesthesiologist has the final say. Talk about shaken nerves. The nurse came by and said she wanted to prepare us, but typically a cold is a deal breaker as far as anesthesia. Lovely!

We were paid a visit by the anesthesiologist and she ordered a nebulizer, breathing treatment for Gavin and then she was going to see how he was doing. Mind you, he was already sedated with a liquid sedation, and his eyes were dilated, and we were STILL unsure if we would proceed. UGH! After about 4 hours from the time we stepped foot in the hospital, Gavin got the green light, we kissed him and off he went. My heart feels for all the parents who have to send their child into surgery. His procedure wasn't even evasive, it was very minor, but still major since they had to put him under -- but, that is the worst feeling. A last kiss as he lays in the bed, and gets wheeled off by the team of nurses. My heart sank.

The ERG confirmed everything we had expected. Dr. Lee called us in for a consultation as soon as everything was complete and brought in all the equipment so we could actually see the pictures of his eyes. Fascinating! Both of his eyes are pretty much mirrored copies of one another (a clear sign of a hereditary condition). Dr. Lee has the only machine in the country that will show detailed pictures of over 100 layers of his eye. We were able to view everything, as well as the atrophied areas that are causing his condition. There is a representation of cone/rod abnormalities in the RPE layer of his eye. All of what he saw pointed in the direction of Leber's Congenital Amaurosis. Only blood work detecting the gene will 100% confirm, but basically he did confirm that he has LCA.

The next topic was onto what Gavin can see. The ERG readout on someone who is sighted will have big spikes in activity like an EKG basically. The spikes are the brains reaction to the light. Gavin's ERG was pretty much flat. We were prepared to hear this. I expected it. It is still a daggar to the heart when his doctor is confirming everything. I could tell it was difficult for him to give us this information. I semi-interrupted and told Dr. Lee, we were expecting this news. He put his head down, and nodded and looked at the readout and showed us. There was hardly any activity. I looked at it and looked away and cried. Not that I was surprised, but to get it confirmed, is another layer of sadness in a way? It's hard for me to put it in words. It is fair to say, Gavin is blind. He can detect light, but no visual acuity.

He ended our consultation with a glimmer of some big hope. As I have stated before, science is on the move with finding treatment for blindness. There is not hope that one day there will be research. Research is happening right now, all over the world, and he confirmed with what I have researched, that LCA is a huge area of study. Gavin may be a candidate for a study in the upcoming years, which is wonderful to know.

There is hope for Gavin, and many others who are in the same boat. It's an exciting time in the area of research, and we can't wait to see where it will take us. Thank you for your kind words and messages of hope, from people I don't even know. It helps me to move forward and march on to raise awareness!

Waiting for the physical

"Not liking these funky hospital jammies, mom."

Fighting the breathing treatment, even though sedated. I have a little spitfire on my hands!

Good thoughts for my little All Star

I am beyond busy, and this week will not be good for posting, we have a lot going on. Landon starts kindergarten Monday, Tuesday is our appt at CHLA, Wednesday I start back with my bowling league, Thursday starts soccer practice, I have work to well...work on, and the list goes on. I just wanted to ask for some prayers for my little Gavin. He will be under general anesthesia for a few hours on Tuesday morning during the procedure. I know he's in good hands and an All Star and will do great. These things are always scary but I will update as soon as I can with the results.

Nothing like...

making a pit stop in the middle of nowhere to stretch the legs

or soaring through the blazing hot air, somewhere over Utah

or pretending to be asleep

so my brother can get sucked into taking 100 pictures in the middle of nowhere with mom

nothing like the parents busting out the jumper in the middle of the Rocky Mountains rest stop

there's nothing like a picnic with family in the middle of Estes Park

or riding a three wheeler for the first time with dad

or some bluegrass, jazz and classical music and my drink in hand to keep me calm.

There's nothing like family, and getting some quality time in with those I love.

There's nothing like Colorado.

1, 2, 3 and do it all over again

Is anyone watching me?


I'm gonna be a little stinker just like my shirt says
These bad boys are coming off

Yep, there's my mom. "Hands down, glasses on". How many times in one day is she going to say that?

These pics represent a pretty typical day with Gavin. Hands down, glasses on... repeat. We even lost his glasses while walking around Pearl Street in Colorado, luckily someone stepped on them (but didn't break them) and set them out on a planter so we could find them. Luckily we did. He's getting pretty good sensing noone around and ripping them off like nobody's business. It's a very tiring task, and literally in Colorado Troy and I took turns being eyeglass monitor. He has been eye pressing a lot lately, I think the new environment in Colorado had to do with some of that, but in general it's been pretty bad. I'm waiting for them to break, or for them to become lost when we are out, and flushing $500 down the drain.

On an update note, his appointment is next Tuesday! This is for the ERG, and will be done at Children's Hospital in LA. I am relieved and anxious. It's full sedation, under general anesthesia and it takes about 2-4 hours. We will know that day the results of the Dr's findings, which is the day I have been looking forward to for 7 months now. We will also get a better understanding of what we think he can see. My gut, I don't think it's much as I have stated before. He is sensitive to light, so there is some perception, but I don't think he has the accuity to be able to make out objects. That's my take on it, but we will know for sure next Tuesday. Please hold him in your prayers that everything will go as planned, and there are no problems with the anesthesia.

Shameless business plug

Wow... I have not done an entry in quite a while. We took a much needed vacation to Colorado to visit family. It was needed, treasured and certainly missed. I spent many summers as a child in Colorado, and it was great to share my experiences with my kids. It was a bit surreal. It was nice to escape and our biggest worry was "What's for dinner?" I will update more with some pics when I get them downloaded.

On the other hand... I am going to self-promote. Yes, I am. Not for Gavin, or any fundraising, but for my new little business. I have always worked, through college, during the first years of our marriage before kids, and even after. Over a year ago, I quit my job (career) for a software company in Irvine. I LOVED the work, it was challenging, I LOVED my coworkers -- but it was in Irvine and some weeks I put in 70 hours at times. Needless to say, I quit to be home where my heart was. Putting many hours in with over 2.5 hours of commute a day is a daunting task. I told myself I would find something part-time, close to home. I did. I found a new position, working from home, part-time. It was perfect. I am no longer career oriented, like I had been most of my adult life. I always pushed myself with my jobs, to better myself, to excel at what I do... and deciding to refocus on putting that focus and energy on your marriage and your children is something I always battled. To then have found a part-time, work from home position, I felt I had it all down. The second week of my training was the week we were confirmed with Gavin's diagnosis. I remember scheduling his appointment so I could be out of there in time to get home to jump on my conference call with the trainer. We got the diagnosis, I cried my eyes out on the drive home, jumped on the conference call, put it on mute and cried some more. I was out of sorts, and couldn't pull it together for a measley one hour conversation. Troy walked in and said, "What are you doing?" He said "Hang up". I did, and that was the end of that job. I couldn't focus on a new position, without even having a moment to come to grips with the news that was just given to me.

I know this is a battle for all parents out there. For every gain there is a loss. When I was fulfilled with my job, my family time took a hit. When I'm home with the family, on one income, our financial aspects take a hit. It's all about balance, prioritizing, and focus. I can multi-task like no other, and this played in my favor when Landon was born. The company I worked for allowed me to work from home after the birth for about a year. Mind you, at the end of the day, I looked like a dishevelled mess, but Landon was fed and happy, and my work was complete. The company was bought out, and that was that.

Needless to say, I have had some time to come to grips with Gavin's condition. My brain is able to now compartmentalize his condition, my feelings about it, and not allow it to spew into everything else. I hope that makes sense. I felt for some time that I couldn't focus on anything else. I have now become better at that. This leads me up the shameless business plug as the title says.

I have ventured into unknown territory. I have left my comfort zone of the computer/e-commerce industry and have landed in direct sales. Yes, direct sales. I don't like the term "direct sales". It sounds like you're shoving product down customers throats, or discretely trying to manipulate them. This company I have found, is nowhere near that. I am an independent jeweler, and I do home shows. The company was founded by a husband and wife, who are now in their 80's. They pride themselves and the company on integrity. It is one of the best commision plans in the United States, and the company is right here in Texas, where the jewelry is manufactured. The list goes on for why I chose this, but mainly it was because I can bring in some extra money for Gavin's medical/education bills and I can also be able to take him to all of his therapy sessions, dr appointments, etc. I plan my work around Gavin, and when I am available to leave the house for a few hours when the kids are with daddy. There is so much to share about this remarkable company, but I had my first home training show this past weekend, and my friends and family came out to be my guinea pigs. It was a success, and I'm thankful for their support.

So...(shameless business plug)... ahem. SO... if you'd like to invite a few girlfriends over and have me come and show the jewelry, you as the hostess, will receive free jewelry. Up to $100 worth before the shows date, and then 30% of the retail on the show date. No scams, no buying into anything. Nada. Email me if you'd like some more info, or if you would like to see a catalog. That concludes the business plug - thank you for your time. ;)

PS - Here is the company. They are a Christian company based on biblical principles. They're pretty wonderful!

CNLL brings you the Gavin Stevens Golf Tournament!

Yes, that's right. Chino National Little League, has kindly offered to do a golf tournament for our little boy. They have been so generous and kind. Thank you board members for you continued support -- you truly are like family to us.

Golf tourney is on September 11th at 8am at El Prado Golf Course. Deadline to register is Sept. 1st. It is a foursome scramble format (but we are also taking individuals).

Please inquire if you would like a flyer and/or more information.

We need golfers, sponsors and raffle prizes!

For all you business owners, especially in the area, this would be a great way to advertise (plus tax-deductible). We will be having the raffle items on a table for display throughout the duration of the day, and will be raffled off during the sit down banquet lunch. A description of the product, as well as the business name will be described by the MC of the event at time of raffle. Great way for some business exposure! There is no minimum dollar amount for raffle items.

If you're not a golfer, but would like to just purchase lunch and be a part of the raffle, we are selling lunch tickets as well. You do not need to golf to be a part of the fun!

Tooth Fairy - SOS!

Ok, so where in the world can I find a tooth fairy that brings teeth? Can someone create a fairy to take out the terrible process of teeth coming in, and just makes them magically appear? Gavin is in agony, he has his two bottom teeth. His two top teeth are making their way in, and it's been agonizing (mind you, they're enormous looking - or maybe the area is just so swollen). Motrin has been helping, but after I gave him a dosage yesterday - he puked it up. Therefore leaving the everlasting question of "What, if any, of the medication did he absorb?" By the events of last night, I can very well say, none of it. I finally dozed off at about 3:45 am, and woke up at 6:30. I feel so badly for him.

What timing, we leave middle of the night Saturday for our 16 hour road trip to Colorado. Someone remind me why I wanted to do this instead of flying? Right, because it's cheaper and I wanted some 'road trip family time'. Didn't know this would include some old fashioned, high-pitch screaming, chewing on anything he can get his hands on, drooling everywhere, in pain, 10 month old! All part of memories to look back on, I'm sure.

That's all I have. I've been in a non-writing mood funk.

By the way, we have a golf tournament coming up September 11th in Chino for Gavin. We need golfers AND business owners to sponsor or to donate raffle prizes. Promote your business! Tax-deductible. ;) More on that later... my little beaver still has not had his nap and has already gnawed off half the table. I will post with details on the tourney later this evening.

Great News!

We have been approved! Dr. Lee at CHLA did his magic, and insurance has approved and CHLA agreed. Mumbo jumbo... blah blah blah. I don't know all exact details, but I do know we will be getting the ERG (Electroretinogram) at Children's Hospital LA very very soon. This will confirm our suspicion of the disease, and we can move forward with further blood work on Gavin, as well as with Landon, Troy and myself. The puzzle pieces will finally be put together. We have the end result of the puzzle, which is Gavin and his vision impairment - what we do not have for the past, almost 6 months are the itty bitty pieces. I am beside myself to finally be able to recognize the disease, identify more with causes and begin my work on the gene research. I am totally aware the gene may go unidentified, I get that.

We spoke to some people at the conference in our LCA group break out session. Some have experienced kidney failure/problems as well as seizures and hearing loss. Getting an identification of exactly what he has is HUGE. It will either put my mind to rest, or get on the ball and have continued tests done on Gavin for the above reasons.

Sorry family to hear this on my 'blog'. I finally got a moment to jump on here, and had to share! I could not keep it in any longer. We got word of this late this afternoon, Troy and I are elated.

This has been a very long 6 months of waiting.

Dr. Lee is my hero! He went above and beyond, and did not give up. THANK YOU!

And so our next chapter begins, and I'm so ready to turn the page.

Gavin's first OC Fair experience

Gavin loves music. He loved hearing his cousins "Jonnie and Brookie" perform. They ROCKED!

Can't get any better than three grandma's at the fair spoiling your kids rotten!

Waiting patiently for the next song...

Whoo hoo! I hear music.

The fair turkey legs don't taste as good as mine.

Enough Corn on the cob, Cream Cheese on a stick, turkey legs and Fried Avocado and twinkies for one night.