:: It Feels Like A Miracle. ::

It Feels Like A Miracle.
 
It really does. I never knew, but always hoped, for a 100% positive appointment at UCLA. Just a few weeks ago we had our check up with Dr. Demmer, the opthamologist. The appointment did not start off the best when Dr. Demmer walked in and said, "Hi Connor, remember me?" and he responded, "Ya, I don't like you." Connor was very sad the entire drive there as he hates getting the drops in his eyes for dilation and Dr. Demmer is the one who does it. I was a bit nervous, but Dr. Demmer moved right along with his tests and observations and Connor listened and did everything perfectly. During the exam I was in amazement at how well Connor was doing with testing. He was reading his letters and signs at a drastically smaller size than previous appointments. At the end, Dr. Demmer said we will not be dilating his eyes. Connor was SO very thankful to Dr. Demmer, it was pretty cute. As Dr. Demmer read to me Connor's results for the day I was a bit confused. He had told me Connor was seeing out of both eyes very well, mentioning his right eye was catching up with his left and getting stronger. WOW. Connor's vision was also read at a 20/40 :D! Double WOW.

WHAT DOES THIS MEAN? Go celebrate! :D Go celebrate that Connor's eyes are getting better and thanks to you, your help, your loving support, we made a decision that was PERFECT for Connor. Switching his care to UCLA where they were on top of his condition, placing him in contacts and giving him the care his eyes needed before it was too late was PERFECT. All the testing we have been put through to find out what "disease" he has or does not have may have not been neccessary. When a child is born they have little sight. Their brain teaches their eyes to see at farther distances and it takes a few months. Connor was born nearsighted and went 8 months with his brain not training his eyes to see, because he could not and his brain stopped trying. After all we have been through, Dr. Demmer is most confident that Connor's condition is that he was not put in contacts early enough. His eye sight was so severe that contacts is what he needed when he was 6 months (when we finally discovered his eye sight). Now that Connor is awesome about wearing contacts & prefers them over his glasses, his brain is beginning to catch up and teach his eyes to see. Dr. Demmer said, I will not be surprised if we have fitted him properly for lenses that he will be seeing 20/20 by his next appointment! WHAT?! Crazy, right? Amazing grace of God! I am overwhelmed with happiness. Just 6 months ago, he tested at 20/100 & 20/90 & using one eye over the other. A huge difference and it is beyond words what we are feeling.

I will never be able to express the feelings I have had about Connor's vision. This time last year I thought I would be learning braille with my son prior to him entering kindergarten. I was surrounded by other moms who would always ask if I would intergrate him into a "normal" classroom. UGH, they got the stink eye! :D I would have nightmares that Connor was going to be the first toddler with an eye transplant, trying to keep him from living life blind. On a daily basis it would cross my mind about how as a parent I could bottle up Connor's confidence and happiness of life...fearing he would start to recognize he was not as good as the other kids because he can't see as well. I encouraged Connor to love music in hopes that he could be a great musician helping his confidence instead of trying to play sports and never feel successful. I would think about how he would never drive a car, even though he talks weekly about driving the family wagon and monster truck when he is 16. Just a few of many feelings...and just last spring his eyes were still getting worse. NOW.. I smile 25 times a day at Connor, thankful that now I don't have to worry that this may be the last time, that he will have a chance to do it all, do it well and see just as clearly as anybody else, with "tontacts". Unreal how life can change, so quickly.

As many of your know, my mom passed away in July. A few dear friends of mine mentioned that my mother will become the angel of his eyes. My Mom loved Connor differently than anyone else. Many times she mentioned on her facebook page, "He has my heart" under a cute picture of him. She was there, almost always at his appointments, or the first one to know the news, because she texted and called the entire appointment. Mom was also the one who researched UCLA, searching for someone who would take care of him and prevent his eyes from getting worse. At my Mom's memorial Connor went to throw her ashes in the ocean, but instead they landed all down his back. He laughed, I laughed...in a sense it was closure that she was another beautiful angel in heaven, but one who would look over Connor. Crazy how life can happen. Since her passing, Connor has not put up any fights for getting his contacts in and asks for them in the morning. He had one appointment with his contact specialist in August which said everything looked good. (Crazy the appointment before that they were concerned why his eyes were getting worse again, changing his prescription 3 times in the spring). And now this past appointment...throwing Stickler's Syndrome out the window and "Connor has a rare disease that we have just not discovered yet" out too. Life changes quickly in many ways, his eyes we are so thankful for!!!

Seeing Dr. Awesome

 

Hi Friends and Family!

A little update on Connor and his beautiful eyes!

We went to UCLA 2 weeks ago for a checkup with the contact specialist and his opthamologist. He has been seeing his contact specialist every three weeks, but she asked if we would get an appointment with Dr. Demmer. Yep, okay! So we did and visited both of them in one day to make it easy on us. Not like it really is easy sitting in the office doing tests for 5 hours! But it is nicer to do them in one day and not be driving back and forth to UCLA. It is hard on Connor, but this day, you would have never known. He was the most cooperative patient ever! He sat in the chair all by himself, listened to the doctors, performed each and every test without a complaint (well the eye drops to dilate his eyes were a nightmare). And of course informed everyone that he is now 3 years old, a big boy! I was amazed, the trust he has grown with his doctor's is unreal. It makes me feel so confident that he is in the right place and he too knows they are helping him see better. Dr. Demmer, his opthamologist was known as Dr. Awesome for the day. So the BEST news from the day, since he was so cooperative, they will NOT have to put him under anesthesia this summer. WOOOO HOOOO!

We went to see Dr. Demmer because Dr. Woo, noticed in the past 6 weeks Connor's right eye was getting worse and she thought Connor was starting to shut his right eye down, using only his left eye (the stronger one) to see. This is something we could not tell while he was wearing contacts. However, Mike and I had both noticed if he was wearing his glasses or nothing at all he always closes his right eye to look at things. :( Not what we wanted to hear, but he was due for a check up in June anyways, so this was just a few weeks early.

Dr. Demmer really is awesome. He is so good with the kids, engaging Connor with new toys, movies, and stuffed animals. Connor was doing one of his eye exams and Dr. Demmer put on Tom & Jerry. Connor said, "Wow, Lightening McQueen". Man, I watch Connor everyday and look at how he interacts with things, but it still breaks my heart. I just tear up. It is SO hard to stay strong, when I need to. I am so grateful I always have a Grandma there with me, who stays strong and is so loving to me, Connor and Taylor! THANK YOU Sue and Mom, you woman are so powerful and strong. I really thank you for all your support attending these appointments with me. Connor knows his complete alphabet and will do the eye chart, naming the letters as they get smaller. He can not state which one is clearer yet, but we will get there. It is so hard to see him stop naming them when to my eyes, they are huge! He is seeing a bit better now. 20/60 in his left eye and 20/80 in his right eye, with contacts in. Both doctors are very happy with how well his contacts are working and fitting. Connor got a few breaks as they dilated his eyes. He LOVES to go outside and and have a snack while watching the construction trucks building the new hospital. 

When we went back in with Dr. Demmer he checked his new prescription. He confirmed that Connor's eyes have gotten worse. :( Why? We do not know. It is heart breaking to not know the answer. To not know what his eyes will be like by the time he goes to Kindergarten. It truthfully is the worst. "Why Dr. Demmer? Why?" I think I said that over and over. I really just want to know. His answers to me, Connor may have Stickler's Syndrome and it just did not show up. He may have a disease we have not discovered yet. There is nothing else we can do, except give him corrective lenses and continue monitoring him closely. The best news is the medical field is progressing so quickly that hopefully we will find something soon. When my mom and I started asking about all the surgeries that can be done, he mentioned that there is no surgery that can correct Connor's eye sight. He said to me, I don't think you know how rare and severe your son's eye sight is. REALLY? Just what a mom wants to here! I told him I know, I think I just want an answer as to why. Dr. Demmer gave me some lenses to put over my eyes to see what Connor can see. WOW. I did not know how severe his eyes were. My heart stopped beating. A stream of tears rolled down my cheeks. Connor has learned his world as a blur. He has no clue of the beauty and definition of things. He has learned everything in his world like the colors in the rainbow blur together. And he is HAPPY! I am so very THANKFUL. He does not know anything to be different. I pray there is answers. I pray there will be a way to help his eye sight. I look forward to the day that it clicks for Connor, and he can see things clearly.

After the appointment we have ordered him new contacts and new glasses. He will be getting his first pair of big boy glasses (no back strap!) soon. I will update with a picture :D! They said to wait 20 days, as it takes a while to make his lenses. The worst part is his new prescription will not allow for transition lenses, which is a bummer because his eyes are so sensitive to sun light. Prescriptive sunglasses will be the next thing to order. He also just started swimming lessons again, which is hard for him because he wants his glasses so he can see and he is not allowed to wear his contacts in the water. I tried to order him prescriptive goggles, but they do not make them withi his prescription or even close to it. Ugh, so frustrating. He was having a very hard time at first in swimming, but I think he is building more trust with his teacher that the tears have lessened.

As for contacts...Did you know as of June 3rd, Connor has been in contacts for 1 year! I can't believe it. A year ago, Mike and I would have to hold him down. It would take about 45 minutes to get them in and ending with the whole family crying and hugging each other for an additional 45 minutes. We also ate LOTS and LOTS of popsicles to make us feel better! Thank God we are still not doing that. He is getting much better! We put them in every morning after breakfast and after our snuggle time when he wakes up from his nap. He puts up a fight 2 times out of 10, making the complete process 3-5 minutes. It has to be the same routine, same place every time. He has to sit on my bed, feet over the edge, hands down, and I have to do the blue one first, give it bubble kisses and then the green one with more bubble kisses. So it works, while we are home and he is doing good. He still says he does not like them and they bug him. But I can tell a huge difference in his behavior with others, his confidence in trying new things and the way he focus' with his toys. There are a lot of rules with his contacts and he knows them! He knows he is not allowed to dig in sand or dirt, go to the beach, take a shower or take a nap. There has been a few times I have asked him to get in the bath with his sister and he freaks out, "I can't, I have my contacts in!" Or we are driving somewhere and I ask him if he is getting tired and needs a nap. "I need to, but I can't. I have my contacts in." I give him 1 more year and he will be putting in his own contacts :D!

I may sound crazy...but I have put in orders for Connor's medical records with his eye doctors so we can see a few more doctors and get their opinions. I just don't want to settle on one doctor's opinion. I will keep you posted on those visits too.

Thanks again everyone! I have appreciated all of your suggestions, lending your ear, reaching out to find support groups, doing research to find answers, asking your friends and family for opinions and praying! Connor man is such a blessing to our family and we forever hope he will be able to participate and accomplish everything he wants to in life!

Much Love,
Connor's Mommy

:: Contacts, Oh Contacts. ::

Contacts, Oh Contacts.

It has taken me some time to write this, sorry. I like to be a positive writer, I try my best to be positive, but lets face it...contacts are awful for a toddler. Good news is, Connor CAN see! Therefore, I am super thankful!

Update: Connor got a horrible eye infection a few weeks back. His eyes were all watery and had major puss. By the time I tried to take his contacts out, I could not even get my fingers on them. It was quite tramatic for Connor getting them out. We ended up in the ER to see what was going on and to make sure I did not scratch his eye when removing the contacts. Things were okay, he just had a conjunctivitis. We were asked to throw away the contacts and get new ones. My response, Really? Seriously? Are you kidding me? We just got it. I can't clean it somehow? What? Ohkay...Order it, you have my card on file. It is a bummer to lose them, but this was so much different being asked to throw $250 away! So his eye got better. He was happier, but he did not want anything to do with contacts again. After his eye healed we saw his contact specialist. It had been the happiest three month (much needed) break from UCLA. He was not happy to be back though. He screamed, cried, did not listen or cooperate in any way. When I left the room, he decided to cooperate for a couple tests. One of which the doctor informed us that his right eye is getting worse. She has prescribed him a new power -2 from it's current prescription. UGH...So hard to hear! Not what I wanted to hear. For three months, we just felt that Connor was doing so much better and things were looking up. She is worried Connor is not wearing his contacts enough. Since Mike got his new job and began traveling, Connor was only wearing his contacts a few times a week, not everyday. His doctor was not happy with that, saying that his contacts need to be in all day! I had no clue how this was going to be possible as it takes two of us to hold him down. They suggested getting a friend or nurse coming into the home to help...ya right! (is what was going through my mind). Do they understand how awful our mornings are everyday with contacts? At least Connor knows we love him...I did not like the idea of some random nurse participating in this. It has been two weeks and we did not hire anyone to come in our home. Mike has worked his schedule so he would be home for this new transition and we have been putting them in in the morning and after nap. Something has finally clicked with Connor...FINALLY! He still puts up a fight, but I can get them in by myself. There has been a few times he decides he wants them in and he sits up or stands ("just like Daddy"). He is becoming very proud of getting his contacts in, being "brave". Mike and I are SO very thankful and truely hope he will stay positive about them. Changes in lens, eye infections, contacts going to the back of his eyes, all make for him to have negative thoughts on them, so I pray for a while we can have a good run of healthier eyes! We are also so thankful for our friends Cherise and Davey. A couple months back they created a prize box for Connor to choose a wrapped prize if he did a good job getting his contacts in. I really believe that this may be the reason he is accepting his contacts. They filled this box with the coolest prizes and he looked forward to what new toy he would get. So THANK YOU Cherise and Davey for coming up with such a wonderful reward system and helping our hard mornings end with some fun and a little laughter!
We are back to going to UCLA every 3 weeks, so we will keep you posted more on how his appointments are going. 

THANK YOU. Thank you for reading. listening. supporting. reaching out. giving hugs. Keep praying for Connor.
Love,
Connor's Mom

:: GOODBYE 2010! ITS A NEW YEAR! ::

Wow, I just spent a few minutes reading up on our year of 2010 with Connor and his eyes. What a year, for Connor and our whole family. It was rough...between finding out Connor's eyes were more severe than just needing cute little glasses, starting contacts, going through genetic testing, and then all the unknowns that are still unknown.

Contacts have been by far the hardest part of the year. They are ridiculous for toddlers! The hardest thing I hope I ever have to do in my life. I remember the doctor telling us that Connor's contacts were going to be hard because he is a 2 year old, but the transition period would be 2 - 8 weeks. We are going on 7 months with contacts and well we are still not there. There were many dreaded mornings of getting out of bed, mornings full of tears, tantrums, ice cream, candy, fro yo pops, popsicles, tv and lots of snuggles. When we first started contacts it would take an hour of holding him down and sitting on him while he was screaming to try and put contacts in his eyes. It was a disaster, I had every right to cry with him! About 4 months into it and going through 5 contacts, we were over it! The doctor told us it really was not an option. For Connor's situation his glasses will not correct his eye sight, he needs contacts. The exact words from the doc over the phone, "If you stop using his lenses, it will be your fault when his eyes get worse." Ouch, we really needed this though. We needed someone to just tell us, "YOU HAVE TO!" Mike and I would sometimes ignore each other in the mornings knowing we were suppose to be putting in contacts, we would put if off even for only 5 minutes just because we both dread it. Who wants to hold down their innocent child, who is screaming, "Your mean mommy/daddy,stop that...,let go of me..., no no no, get me out of here, I hate tontacts!", kicking, hitting, biting. Yep...not fun to say the least. Not the way anyone wants to start off their day. So the incentives are HUGE in the morning...I can care less if the pediatrician is telling me not to give him sweets. HA...He could eat otter pops all day long for all I care. Somedays I was missing, did not answer my phone, did not open up my laptop, did not see friends...I was playing with Connor, staring him in his sweet eyes, praying one day he will see Earth the way I see it. He has always loved his contacts once they are in, its the part of putting them in and sometimes taking them out. He can not sleep in them, play in dirt, sand or water with them in, a normal 2 year old boys life...so we have to plan accordingly and sometimes not go to certain play dates, but that is the easy part. Even though contacts have been a nightmare, we know the transition to UCLA was the smartest decision we made for him. The team of doctor's at UCLA worked quickly together to help Connor's eye situation, while doctor's stood around in San Diego unsure of his eye sight and what to do. We are confident that the each day we have spent at UCLA is well worth it, even if it is not the most convinent or most affordable situation and never any fun.

Last week we made our first trip of the year to UCLA. We were suppose to make this trip at the end of December, but we put it off as we really were not sure what kind of news we were going to get and it was the holidays. So we postponed it for the New Year, knowing it would start off good or bad. HAPPY NEW YEAR, it was a great visit. Connor is getting a full eye exam every six months now, so this was the first 6 month mark from when he went under anesthesia. We met with his contact specialist first to find out Connor is doing great with his lenses. This visit has been every other week since Connor got them in June. Now he was cleared for 3 months, as long as we don't loose any. So exciting!!! Connor then had his eye exam with Dr. Demer and impressed Mike and I. He decided to sit in the chair all by himself while the technician and then Dr. Demer did tests on him, impressing the two doctors as well. After 4 hours of sitting in the office Connor did begin to loose it, but managed to get through enough of the tests so we would not have to put him under anesthesia - Thank God! Dr. Demer found that Connor's prescription has not changed :D He is happy with the contacts and wants Connor to use them as much as possible. Connor can see 20/60 with contacts :D This is his best score - I cried. It has been amazing to watch his progression during his exams over the past 7 months. I am not sure if I mentioned before, but with glasses Connor was beginning to not use his right eye..scary. Dr. Demer said we would not worry about it and just see how he does after he has properly fit contact lenses. At our last visit, Connor is starting to use his right eye more, scoring a 20/80 in his right eye and 20/60 in his left eye :D. Seriously, this was a huge answer to prayer. Within in the first year of having glasses, his prescription doubled in severity, so of course we thought it was going to change a bit...I did not think it would stay the same! (tears, these are so hard to write!) Mike and I are so very grateful for all the advancements in technology, for finding doctors who care and know what to do to help his situation. It is so hard, as everyday we look into his "beautiful eyes" and really wonder what he can see, how much better are contacts than glasses, what are the differences...I could make a list a mile long. I guess only time will tell as Connor can communicate better.

We are still dealing with every fight he gives us with his contacts...but it has been getting better. He has straight legs (sometimes), a tunnel to go under (my legs just in case he starts kicking), buzz lightyear arms or holding daddy's hands for comfort and big eyes (not really, he fights the eyes, but when I say big eyes he opens his mouth so big). Incentives are key and he usually will try to work for them if they are good. This week his favorite is a Thomas PEZ dispenser who fills up with candy when he does a great job.

Over the past month, Connor's eyes have become very sensitive to light. So sensitive that sometimes we have to leave all the shades in the house down or he wears his sunglasses in the house.  This can be a sign of glaucoma, but at this point Dr. Demer does not believe that is what it is. He will be seen in 6 months and he will be tested for sure to rule it out. Hopefully since Connor will be a bit older he will cooperate more, if not they will out him under anesthesia to get a full eye exam done, looking closely at his eye pressure and retina. Also during the exam, white bumps were found on the inside of his eye lids. This can be crystals that are scratching at his eyes or doing no harm. During the next exam Dr. Demer will look at them and remove them if necessary.

What a visit...so much to be thankful for and a few more added issues, what I call "The Unknowns"...I am not sure they will ever go away. Thank goodness every day is a new day, everyday is full of new health advancements and everyday Connor sees something new. He saw a rainbow for the first time about 2 weeks ago - the best rainbow I have ever seen, because I got to enjoy it with one enthusiastic little mind...I could have sat under that rainbow until it disappeared.

Thank you friends, family, blog readers for everything this past year! What a blessing it was to receive this fund for Connor's medical bills. I am still blown away that I have true friendship in life! Something that some don't ever experience. (tears, again) I am speachless, yet so incredibly Thankful! This year is new and I am so hopeful for a good year in Connor's eyes. Please keep our bug in your prayers. Feel free to email or call me with any new ideas on how to make it easier for him with contacts, new incentive ideas or just to share your story.

Thanks again for all you do for our family! Thank you for loving our Connor man! I hope this new year brings much happiness and joy for you all!

With love,
Connor's Mommy

:: Horseshoes and Hotdogs SUCCESS! ::

Horseshoes and Hotdogs was a huge success! A big thank you to all of you who came out and supported Connor's Vision. We also had several people donate who were there in spirit, thank you!  We really appreciate those of you who donated prizes for the raffle, so thank you: Esther and Mandi, from Pret-a-Porter Salon & Spa, Ra Sushi, Lotus Baby, Ashley Perry Photography and Cindy at C.O. International!

I am so happy to report that we made $1,175 for Connor's Vision, bringing the grand of this fund to $6,325!! All of your support and love is AMAZING and on behalf of the Perry family we thank you so very much.

A big congratulations to this year's winners, Mike Perry and Stuart Hartley!!! They are the raining CHAMPS of 2010!!

As you all know Ashley is an AWESOME photographer and here are some of her pictures of Horseshoes and Hotdogs. Until next year!!!  Thanks again!!

:: Horseshoes and Hotdogs ~ October 16th 1-4pm ::

When: October 16, 2010
Time: 1-4 pm
Where: Balboa Park Horseshoe Club
             Corner of 6th and Juniper in Balboa Park, San Diego
RSVP: Lori Jimenez • 858-336-8106 • lorijimenez@cox.net

Join us for the 1st annual horseshoe tournament, benefiting Connor's Vision a fund that helps the amazing Perry family pay for the mounting eye related expenses of their little boy Connor. Bring your family and friends and get ready to have some fun for a great cause! To play in the horseshoe tournament it is a $10 donation per person. If you don't have a team mate, don't worry, we'll find a great partner for you. Hotdogs and snacks will also be provided for a donation. We will also be selling raffle tickets for awesome prizes!!  We'll see you Saturday the 16th for a great day!!

If you can't make it, you can still donate!!To Donate please make your check payable to Brittinny Allen

and mail to:

Brittinny Allen
2370 Etiwanda Street
San Diego, CA 92107

If you have any questions please contact Lori Jimenez at lorijimenez@cox.net or Brittinny Allen at britellyse@hotmail.com. Brittinny and Lori will give 100% of the donations to Mike and Ashley Perry. We will be accepting donations throughout the year. Thank you so much for your support!

To find out more about Connor's story, read the previous entries below. Thank you!!

DIRECTIONS:
163 south; use the University Avenue exit but proceed straight south on 6th Avenue; turn left on El Prado Drive; turn right on Balboa Drive and proceed straight past Juniper Street; the courts will be immediately on your right. Find parking and let's have some fun!

:: Genetic Testing Results ::

Everyday I remember how grateful I am to have this little man in my life, in our life, as a son, a brother and a student. I get to teach him everything I know and love him with my whole heart! I get to comfort him, hold him, hug him, kiss him, and let him know Mom and Dad will protect him and only do things that will be good for him as he grows older.

Connor has gone through many doctor's appointments, exams, physicals, a lot for a two year old and he continues to be brave and is beginning to really love a few of his doctors.

On Friday, Dr. Byrd left a message stating Connor's genetic testing was in, but we were unable to speak with her until this morning. Connor's collagen testing came back negative. This means there was no mutation found in his gene, therefore they will NOT diagnose him with Stickler's Syndrome. This test has a 73% chance for being correct and Connor could fall into the 27% of having Stickler's Syndrome, but have negative test results. Connor's eyes are so severe and very striking to all the doctor's that they want to treat him like a Stickler's Syndrome patient. Dr. Byrd mentioned that the severity of Connor's eyes are so abnormal, that it makes more sense for a disease (Stickler's) to be attacking his eye sight. Connor is going to be treated as a Stickler's patient for now. He is going to be watched closely by his eye doctor's and have full physicals more regularly.

What does this mean for us? Well, we have been wanting answers since we first found out about Connor's eyes at 6 weeks. 2 years and 4 months later, we still want answers...if we will ever have answers, we do not know. We are happy Connor was not diagnosed with a disease. Thankful he will be monitored by a team of doctor's that we have much appreciation for.

He is an awesome, happy, loving, fun, a normal two year old terror at moments and we are so thankful for him. Mike and I decided when I was pregnant with Connor we would raise the child God gave us, no matter what the health problems would be. We got the child God gave us and we are so blessed!!! Everyone has hardships, this journey together as a family has been hard, but life is full when you are surrounded by amazing friends and family who support you emotionally, physically, spiritually and financially each step of the way.

:: Genetic Testing ::

Connor is one tough little man. We went for blood work tonight to start his Genetic Testing for Stickler's Syndrome. He was nervous to go into the office, but once he sat on my lap - he was good. Not a single tear, only a few ouch's. He got pricked in both arms because he moved, but once ice cream was mentioned he was doing alright. He is proud of his blue circles (on his arms) for being a good boy at the doctor :) We are back to the waiting game as it will take 4-8 weeks to receive results from these tests. Thanks for all your support...

:: A reminder on how to donate ::

To Donate please make your check payable to Brittinny Allen
and mail to:

Brittinny Allen
2370 Etiwanda Street
San Diego, CA 92107

If you have any questions please contact Lori Jimenez at lorijimenez@cox.net or Brittinny Allen at britellyse@hotmail.com. Brittinny and Lori will give 100% of the donations to Mike and Ashley Perry. We will be accepting donations throughout the year. Thank you so much for your support!

:: July Update ::

Hi Friends...

A little update on our Connor man :D

Contacts are getting a bit easier - thankfully! Since Connor's eye is not shaped like a normal eye, they are having a hard time fitting the contacts. We have now lost two of them :( We will be seeing our contact lens specialist next Friday for a new pair, hoping these ones will fit perfectly! They say third time is a charm! Dr. Lee will be leaving us, so we will be getting a new contact lens specialist to work with. Please pray we will be able to establish a good relationship with this doctor, as these appointments are very rough for Connor. Dr. Lee has become a friend to him and has finally built trust with her and enjoys seeing her. We will miss her a lot!

On Tuesday, July 20th we met with Dr. Bird, a genetics specialist. Dr. Demmer requested for Connor to get genetic testing done for Stickler's Syndrome. It took two months to get an appointment, but we are thankful we are at Rady's Children in San Diego and do not have to go to UCLA. Dr. Bird was wonderful, she loved Connor and he instantly loved her when he got 8 Thomas the Train Stickers. She did a complete physical on Connor and ask for history of him as well as each of our families. Dr. Bird was very thankful to see Dr. Demmer requesting to put Connor through testing now at such a young age. Dr. Bird said we could begin testing now, but each test can cost $2000 - $5000. We decided we would wait for authorization from our insurance for these tests which will take about 30 days. We will start testing hopefully beginning of September. Connor's genetic testing will just include blood work. We are not sure how long it will take to get results from testing, as it can lead to Mike, Taylor and myself all being tested. We will update you as soon as we find out when his testing will begin.

Thank you again for all your uplifting letters, support and love for our family and sweet boy. We are truly grateful for each one of you!

Love,
Mike and Ashley

:: We have raised $5,150 ::

:: His eyes are beautiful ::

Last Thursday was our official post opp visit with Dr. Demmer. We walked in with a list of questions for him to answer and this is what we got...Connor's eyes are not crossing :D, he CAN see and does use his right eye :D, his irregular shaped and not centered pupils are not related to any of his eye problems - it can just happen, Connor has a slight stigmatism, his egg shaped eye creates the optic nerve to attach in a different spot which can cause different readings of his prescription - so it is possible that his prescription has never been read correctly, even now. Dr. Demmer says we will never know until he can tell us, which is about 10-12 years of age. Because Dr. Demmer has never seen such a high myopia (nearsightedness) in a 2 year old we are beginning Genetic testing on July 20th. I know many have asked if this is preventable and is there corrective surgery...at this point the answer is a big don't know. Until there is a proper diagnosis of Connor's eyes we will not know. The next few years Connor is going to be watched closer and we will hopefully find out more each visit to Jule's Stein.

We also saw the contact specialist to pick up Connor's contacts. It was the big day as Connor got to go walking without his glasses, just his new, first pair, of contacts. Once we got both contacts in Connor walked around the building, licking his lollipop, smiling and told daddy "that's not so bad". It was so cute...I think there was a few of us with tears. :) His eyes are beautiful, he has the most gorgeous long eye lashes and now cool eyes. His right eye is green and blue eye is bluer (because it is a blue contact). They have colored contacts so it makes it easier to remember which eye they go into, easier to find if you loose it and easier to actually see it on the eye...I was not excited about this at first, but now I am so thankful for this technology as it makes OUR life a bit easier.

Now that we are home, not much has changed. It is a horrible process putting them in and taking them out...something no parent wants to go through. However we have been told that it is the best thing for Connor, so Mike and I are sticking together and supporting each other as we both are having an extremely hard time. Connor screams, cries, kicks, asks us "please stop mommy/daddy", and sweats until it looks like he has jumped into a swimming pool with his clothes on. It is rough, but once he has them in he claps and and says "good job connor", we shower him in hugs, kisses, as many otter pops as he wants and a new matchbox truck! Then he gets to do whatever he wants (usually a request to walk the alley ways :D). We are hoping it will get easier. The first day we lost a contact and found it three hours later, it came back to life thank god!

Thanks again for all the love, support, donations and continuous prayer for Connor. I know there is so many of us wanting answers and to hear his eyes are not going to keep getting worse. As the mom of Connor I have just had to lift everything off my chest and know each step is a step in the right direction and we are working each day to make the best life possible for him. God KNOWS the purpose to all of this and HOPEfully one day it will be revealed to us.

:: We have raised $5090, thank you everyone! ::

:: Hope ::

My Dear Child, 

Do you know what hope is?

It's magic and it's free.

It's not a prescription.

It's not in an IV.

It punctuates our laughter.

It sparkles in our tears.

It simmers under sorrows.

It dissipates our fears.

Do you know what hope is?

It's reaching past today.

It's dreaming of tomorrow.

It's trying a new way.

It's pushing past impossible.

It's pounding down the door.

It's questioning the answer.

It's always seeking more.

It' rumours of a break.

It's whispers of a cure. 

A roller coaster ride.

Of remedies, unsure.

Do you know what hope is?

It's candy dor the soul. 

It's perfume for the spirit.

To share it makes you whole.

Take my hand, little one, 

Let's share this hope together!

Love, 

GiGi Jean

:: Connor's May UCLA Visit ::

Last week we were at UCLA for Connor's official examination under anesthesia with Dr. Demmer. We were relieved to find out Connor's eyes are completely healthy!!! Praise GOD! Dr. Demmer did find that Connor's eyes were slightly different from the first prescription he had given us, so we are ordering his new glasses tomorrow with a new prescription of -22.5 in the left eye and -19.5 in the right eye. He also saw that Connor's eye is shaped like an egg rather than a ping pong ball, he is not sure why...so he is doing some research on this. Dr. Demmer is concerned that there could be other problems Connor has that is creating such a severe change in his eyes. He has asked us to see a genetic specialist to rule out any other diseases he could have causing his eye problems. This is our next step along with getting contacts. Connor spent two days getting fitted for contacts while we were there and we will go back Monday to try and practice getting them in. This will be hard transition for Connor because of his age, but it is highly recommended as it will give Connor clarity of objects and peripheral vision. The funniest part of our visit was when the doc sat me down to discuss the price of Connor's contacts (just incase I fainted!), each pair will cost $500. This was a hard trip for us to make as a family, but we are so grateful to all of you as we knew we had continuous support the whole time we were there. We thank you from the bottom of our hearts for the love, prayers and support. We will keep you posted on everything we find out and the dates of his next appointments.

Connor in front of the Jules Stein Institute

Connor waiting with mommy

Connor waiting to go in

Connor and Grandma making wishes for the day

:: Welcome Taylor Sunshine Perry ::

Taylor Sunshine Perry came into this world on April 22 at 2:11 am. She was a healthy 7lbs 11 oz. She is a beautiful addition to the family and the Perry's are doing great!

Since miss Taylor arrived a little later than expected the Perry's have rescheduled Connor's eye appointment at UCLA for May 19th. We'll update you after his appointment.

As of May 3rd we have raised $4,940!!!! Wow, the love for the Perry family is amazing and so are all of you who have helped out.

Lots of love to you Perry family!!! xoxo

Yoga & Raffle Success!

Thank you to everyone who participated in our Yoga and Raffle last night, it was a great success! We raised $500 for Connor's Vision, bringing our grand total to $4,430!

A special thank you to Kori for teaching such a wonderful class and to Haute Yoga Studio for letting us use their amazing space.

Thanks again everyone, your support has made a huge difference in the Perry's lives.

:: Lori ::

We Have Raised......

As of April 9 we have raised an amazing total of $3,930!!! Thank you everyone!!

Yoga & Raffle for Connor's Vision ~ April 16th

Click on image to view larger

We Have Raised......

$3080.00 as of 3/26/10. Thank you so much everyone!!!

3-25-10 Appointment at the Jules Stein Eye Institute

Yesterday was our first appointment at UCLA with Dr. Joseph Demer. It was an exhausting 4 hours in his office, however, for the majority of the appointment Connor did very well, with just a few tantrums and cries. According to Dr. Demer, Connor's eyes are very straight, so we know his Strabisimus surgery was successful. It was also confirmed that Connor's eye sight has gotten much worse. He was given a new prescription of -17.5 in his right eye and -19 in his left eye. This concerns us a bit, as this change is not normal. There are many reasons why his eye could be developing this way. Currently we have been left in the dark, as Dr. Demer does not want was to worry over possibilities. He wants to make a diagnosis and then educate us. He mentioned it could be due to a disease in his lens, the actual shape of his eye, or the eye developing too quickly. In order to find out what could be going on, Connor will go under Anesthesia at the end of April (there is not a set date yet) to look at his complete eye anatomy. Another doctor will also attend who works with children in contacts. Dr. Demer thinks it would be a smart move to switch Connor into contacts because of his strong prescription.

We thank everyone for your phone calls, prayers, texts, emails and donations. It has meant SO much to us to know there is so many people who love our little boy as much as we do and receiving so much support helps to confirm we are making the right decisions in finding out Connor's proper diagnosis. We love you all and will keep you posted with the dates they set for his next appointment.

~ Ashley and Mike

Connor Checking out the doctor's office :)
3-25-10