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. ;)
Thursday, December 31, 2009
Tuesday, December 1, 2009
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.
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.
Thursday, November 26, 2009
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
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
Monday, November 23, 2009
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.
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.
Wednesday, November 18, 2009
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.
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.
Monday, November 16, 2009
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.
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.
Wednesday, November 11, 2009
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. ;)
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. ;)
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