Thursday, January 13, 2011

Hooray, Hooray! Hooray for Eyes!

Wow, I just spent a few minutes reading up on our year of 2010 with Connor and his eyes over on Connor's Vision Fund Blog. 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 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 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


JJ said...

Ashley, I don't think we can imagine what it is like for you guys. You and Mike are GREAT parents, doing some hard things for your child because you know it is best. Keep it up!

Hazelbug said...

You're amazing parents! One day he'll be able to thank you both big time. For now, just keep filling that pez dispenser :) xoxo

Ashley Perry said...

Thanks Mamas! I am glad you don't have to understand or know what we are going through. Your support is awesome though! xo

Robin Smeal said...

WOW... I feel so ignorant that I never really knew how much you go through on a DAILY basis! You are doing a great job. Pushing through the tough hours of the morning, getting out there and living life, making the most of every moment. I am proud of you. Not sure I could do it....