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