Thursday, October 30, 2008

Summer time fun!

My Personal Journey Part 2

Preston loves the summer time like any other child, because they get to play. NO school! Unfortunately for Preston he has to still continue to patch. We have to get creative sometimes because he is a very active child. He skate boards, rides his dirt bike, rides his regular bike, and those are just some of the things that he enjoys doing that are unsafe for him to patch and do. When he plays his video games that is a great time for him to patch. His eye really has to work hard and that is great! The Doctor recommends that, how fun! And he can play that with his father. I love that because they get the father son bonding time.
He also loves to swim, and he can not wear his patch while swimming, and by the time he gets home he is so tired. when he patches it makes it difficult for him to see even the TV. I try to make him wear it in the morning before we leave and in the car going, he will give me a good fight sometimes, and I feel bad and so I sometimes say okay Preston, but when we get home you need to patch, and that doesn’t always happen. I get so mad at myself I just have to remind him and me the reason I make him patch is because I love him!

Monday, October 20, 2008

Forward letter from Dr. DeSantis

Amblyopia is the leading cause of blindness in children. It is one hundred percent treatable with early detection and intervention. Successful intervention often depends on patching or occlusion of the better eye. By bringing awareness, understanding, and community support for amblyopia and its treatment, Carmen Swick’s books will hopefully help children to accept their own patches or encourage support of one another to patch faithfully when necessary, thus helping to improve amblyopia outcomes. I applaud Ms. Swick’s efforts to this end and congratulate her son Preston for being an inspiration to his mother and to children who are faced with amblyopia themselves or in a friend or family member.

Dr. Diana DeSantis

Friday, October 17, 2008

East Coast Aunt Sandy

I want to say that I decided to post this email as part of my blog instead of in the comment spot. My Aunt Sandy had wrote me this email. I just wanted to post it and let all of you have a chance to read it. She is a very warm kind person and it shows through her kind words. I have not heard or spoken to her in such a long time to long! She heard about Preston's eye issues through my blog. This email just made me want to get my book into print soon as possible! There are other children and adults that have to patch that have not been diagnosed with Ambloypia. Low vision can happen in so many differnt ways. I will make sure that when my books get published that Aaron gets a copy of Patch Land. Here is the email below.

Hi Carmen,
So sorry to hear about the trying times you and Yorkk have had to endear with your super trooper Preston. It must be very hard for you as parents to be forced to try and make progress while knowing it is creating pain and discomfort. I am sure you are on top of this and your little guy will overcome this bump in the road. It is great that he is given the opportunity to carry on with all of his activities right along with the rest of his friends. It is most important that you continue to search out the best pediatric doctors. It sounds like you have found a good match for Preston and research confirms if this diagnosis is treated before the age of 10 the results are very favorable-so hang in there!
Our little guy in Connecticut (Aaron) has also endured eye complications. He had a very bad eye injury when he was 4yrs old and now he is 6yrs and had 4 surgery's and the Doctors have decided it is the best it will be. He caught his eye on a hanger in the children's dept of Old Navy and it completely ripped his eye lid off--this involved surgery to reattach muscle, repair tear ducts, and of course many days of patch's and drops. He also is a super trooper and proving to be another resilient amazing young man. He will never have 20/20 in fact he is at 20/80 like Preston was. Well you be sure to patch if that is recommend by your new doctor. I am sure it is tough but it sounds like he has a wonderful Mom and Dad that will be cheering him on every step of the way.
I cant wait to read your books, It sounds like great therapy and a terrific idea!
Love Aunt Sandy

Wednesday, October 15, 2008

I Read to Dr. DeSantis

I read one of my books Patch Land to Dr. DeSantis, and she loved it. I also read her a letter of what I wanted to accomplish by writing these books. She liked what I was trying to do with the books, the concept of being able to use it as a tool for children struggling to patch and bring awareness to Amplyopia, or for any child having to patch for other medical reasons, and for the ones that don’t have to patch, it would educate people at the same time. Patch Land books are wonderful books full of adventures and problem solving. A child gets to escape for awhile how wonderful is that!

The forward letter for the books

Tuesday, October 14, 2008

Doctor DeSantis Excited!

Doctor Desantis was so excited to tell us that there was a small improvement the last couple of visits. She said it might not be a big improvement but like she says we will take it. I just gave her a big hug! It was so nice to finally hear those words. I had told Dr. DeSantis about my books while ago, and at one appointment I brought my books with me and asked her if I could read one of them to her and If I could also really quick read her what I wanted to accomplish by writing these books. The wonderful Doctor and person that she is said yes. I was really excited and nervous at the same time.

Reading the Books to Dr. DeSantis

Sunday, October 12, 2008

Preston was showing a little improvement

I wrote in my books that Preston started to show improvement and he really did! I was so happy to hear such wonderful news From Doctor DeSantis at one of his eye appointments, And to know that by writing these children’s books Patch Land have contributed a little to that. I loved the fact that Preston was able to use it as one of his a tools to patch.

The Doctor was very excited!

Saturday, October 11, 2008

Reading to Preston's 1st grade class

I did go to Preston’s class that following week. I read to the children in small groups, for two days that week. They gave me there feed back, and I answered question’s for them. Than I started too notice they were able to understand why Preston had to patch and wear glasses. I could see that Preston had some self confidents when the children told him how cool that his mother wrote books about him and that they really liked his dog Beau in the books. It was also nice to see that the children could not wait to see what was going to happen next. Some of the children also asked Preston some questions, and you could see Preston’s face just light up! He was no longer embarrassed, and at that point I realized I needed to get these books published and out there for people to read, and hopefully be able to help many other children with low vision, and for the children that don’t have low vision, That it would help them understand why there are children out there in the world that do, and at the same time enjoy these wonderful adventure books.

“The books really did help Preston”

Thursday, October 9, 2008

My Personal Journey as Preston's Mom

I started writing the books and noticed Preston really took an interest to it. He was the main character and loved the whole process with me. He told his teacher all about the books. Preston’s teacher had asked me if I would like to come in to his 1st grade class and read the Patch Land books to the children. Of course I said yes! That it would be such a great opportunity for me to get feed back from the children, and see if I needed to revise the books a little bit more, because as we know they will tell you the truth if you want to hear it or not.

The Day I Went to Read Patch Land To Preston’s Class

Sunday, October 5, 2008

Race for the cure 2008

Race for the Cure 2008

Today was a very special day! Sunday Oct. 5 Race for the cure. I wanted to add something different to my personal journey. I support the
My mom passed away several years ago from breast cancer. I feel that we were cheated from a wonderful mother, and a grandmother that my children and nieces have never had a chance to meet. I miss her very much! She was a very kind and warm hearted person.
My mother even on her last days here on this earth would wake up with a smile and say please don’t be sad because that will make me sad! She was a very strong person she suffered with the horrible disease Cancer. One day she left us to be in a much better place where she would no longer suffer. I was happy that she was no longer suffering and in pain but, in a very selfish way that did not stop me from painfully missing her and wanting her to be here with us!
I started to write down my feelings and would also write some poems after she had passed away; I guess that is how I would deal with my pain. Years later that is how I am dealing with my son’s eye issues and also to make a difference in this world. I guess what I am saying I never thought that I would be writing children’s books. Looking back and remembering how I use to stay up at night and cry and write at the same time was a wonderful way to release my pain. I am doing the same thing now with my son Preston and also helping other children deal with there low vision. I have lost what I wrote about my mom so many years ago, but it is still in my heart.
This year I decided to put a team together in the memory of my mother. My mother’s name was Paquita, so I decided to call our team
“Paquita’s Earth Angles”. I am now a team captain. We had 18 people that joined my team; some have walked before some have never walked for the cure. I was so happy walking with so many people on our team. For my first year of putting a team together not to bad. It was a wonderful feeling! I am so grateful for everyone that was out there today and not just my team members, we were all there for the same purpose to find a cure for breast cancer. Today was a day of people from all walks of life, different political views all that was set aside to raise money to help stop this horrible disease, breast cancer! I wanted to thank my team so much for getting up early and getting pledges, and hopefully next year we will even do better!. If you see our team out there next year please say hi! I guess it is time to rest my tired feet till next time.
Good Night.

Thursday, October 2, 2008

My personal Journey as Prestons mom

Preston had to start patching his good eye so we could make his weak eye stronger. Unfortunately he could not see since his vision was so poor with corrective lenses it was a 20/80 in his left eye. It was a struggle everyday for him to patch. We tried everything to get him to patch.
We went back to see Dr. Desantis and she had informed us that his eye was not getting better and we need to work on this so the next visit we deicide to dilate his eye every other night.
He had just started Kindergarten and it was a good thing that he is a sharp young boy. He was having a little bit of difficulty seeing the letters poor guy.
After a year of dilating his eye and not seeing any real progress I told the Doctor we did not want to dilate his eye anymore it was interfering with his learning and no real progress she agreed.
So we ordered these really cool new eye patches that don’t stick to his eye lashes. We did incentives so he would patch. He would have to patch for a certain amount of time before we would give him a prize. My mother-law is wonderful, Her support and love, She sends him a care package and he gets new goodies to patch for and she writes him a note with each package giving him words of encouragement.
We are still not seeing the improvement we need I would catch him peeking when he would patch. I felt it was still a struggle and only seeing very little improvement.
My heart would drop every time we went back to see his Doctor and we would hear the words that there was not much improvement.
We knew he had to put allot more effort into patching and keep it going strong. Patching does work! you just have to make sure that he is not cheating and peeking. While we were hearing the not so good news I thought
I would ask the doctor if he was a little legally blind in his left eye she said not a little but he is legally blind in his left that is why we need to really work on it. If he were ever to hurt his other eye he would never be able to drive unless we could get the other eye stronger. I did not want to hear that and now I was really determined to do something else for Preston. On our way home it hit me I am going to write a children’s book on this topic and see if I can help Preston and other children through this process and bring awareness to Amblyopia. It is the # one cause in blindness in children if undetected.

This is when my journey started writing children’s books!

Our dog Beau

Our dog Beau
Preston's eye patch buddy

Preston and his eye Doctor

Preston and his eye Doctor
Eye Exam

Preston and Beau Eye Patching

Preston and Beau Eye Patching
Eye Patch Buddies