Sunday, June 29, 2008
For Grandma and Aunt Stacia!
Birds
This is the nest in our backyard with 2 robin eggs in it. They were so pretty I thought I'd take a picture.
Saturday, June 28, 2008
Sisters!
Friday, June 27, 2008
Cambria Update- genetic doctor
We had the appointment with the genetic specialist yesterday and everything went well. The doctor basically talked with us about her condition and answered our questions. He did one thing to check for albinism and that was to look at her nipples, a little strange but sure enough she lacks pigment in her nipples- who would have thought? He was a wonderful doctor who has seen many cases of Albinism. A few things he explained was that she does have Ocular Albinism (OCA)- which is what we assumed- and that she would face challenges with her eyes but otherwise would be normal. He said her eye sight would probably 20/200 and at worst 20/400 (which is legally blind), but she should be able to function well with glasses. Much of what he talked to us about we had found on the internet, but it was nice to see that our research on the internet produced good information. He explained that her eyes see one object at separate times, because of the nerves being routed the wrong way to her brain- of course he said this in much bigger terms. This was confusing to me, but Kyle's explanation helped me understand- if a normal person's eyes are like 2 video cameras with 2 power sources working together, Cambria's eyes only have 1 power source and can only see one at a time. This is why she crosses her eyes, he says it is important to treat this or the brain will just shut down one eye and it will become lazy and not usefull (this is what the glasses are for right now). We have seen this very clearly lately, she looks at things with her right eye and when you try to look at her left eye (or give her an object to look at) she turns her head to try to focus with her better eye. He said that surgery is often performed to correct this, but will probably not happen for another year or 2. I know this all seems sad, but it isn't this is the way God made her and we are so blessed to have such a precious girl. There are so many other conditions that so many children face, we count our many blessings. The one question we did have was how this would effect any future children- we plan on having one more. We knew there is a 1 in 4 chance of our next child having abinism, but we didn't know if it could be any form of albinism or if the form Cambria has would be our only possibility. We had already decided it didn't matter, but we were of course curious. He said that the way the genetics work would produce the same form of albinism if it were to happen. It is amazing how rare this is and how it could possibly happen to us, what a special little girl. I know many are praying for a miracle and that would be wonderful to see, but know that God doesn't always choose to heal and He is a Great God who often chooses to Use and work through His special children! We are at peace and have been from the begining with what God has placed in our hands and we can't wait to see HIM work through Cambria! Thank you so much for all your prayers, we have felt surrounded by God's love an peace throughout this experience and your prayers have lifted us up and encouraged us in so many ways. Please continue to pray for Cambria and her great desire to take her glasses off, teething has made this very difficult and she just wants to chew on them- she doesn't even have a tooth yet, this is definantly going to be a long road ahead. Another difficult thing is she has become quite content when they are off and loves to play on the floor or in her new bouncer where she knows she can grab at toys, this makes it hard to get her to keep them on and hard for us to stay there and keep putting them on when she is so happy. She is an absolute JOY and everyone who meets just falls in love, she smiles more everyday and even tries to talk (Avalyn thinks she is singing sometimes). She is growing so fast and doing well!
She has her next appointment with the ophtomoligist on Mon. and there are sure to be more updates. I almost forgot, one more prayer request- we have learned more information about a program with our insurance that helps children with special needs and there is a possibility that there will not be the expense for this coverage we originally thought and they will cover any necessary assistance- such as glasses or special therapy. We are praying that this will work and that they will agree to pay for her future glasses (it's too late for the 1st pair- only wish we would have known more, but this program isn't discussed at all and what is on the internet leads you to think it cost more $ than it is worth, you have to figure it out yourself and find who to talk to). Thank you for all your prayers! WE LOVE YOU ALL!!!Wednesday, June 25, 2008
Last Dip in Texas
Tuesday, June 24, 2008
More fun time with the family at cousin Briley's house!
for some reason Aunt Kathryn's "big" potty wasn't scary like all the others- she climbed right up there and used it several times
Cousin picture time- not easy to do when Avalyn and Cambria needed a nap
Meet cousin Briley!
Tuesday, June 17, 2008
Big Girl Avalyn!
I finally got a picture of Avalyn in her Easter dress! She looked so pretty. The necklace she is wearing was my Nana's and I had put it on to wear to church, that didn't last long once she saw it. She wore it all day and I had to hide it when she agreed to take it off for a bath- or she would never take it off. She does Love jewelry. She is growing so fast and I am happy to report she is now potty trained! After the last blog about begining potty training with her it has been quite a challenge. After the first few days going really well things just got BAD- excuse my language but it was potty training hell- I was cleaning up pee and poop everywhere and she refused to sit on the potty when I asked her to. She has always done well naked, but once a diaper, pull-up, or panties were on there was no stopping her. I stoped after 5 days and decided I would try when I got back from Texas. I left the potty out, just in case and baught a package of diapers. The crazy thing about all this was that she was still sleeping through the night dry and nap time dry- it had been a good 2 months of that. Well, after 8 days of wearing a diapers she decided to take the potty training thing in her own hands and pulled the diaper down and went in her potty. Everytime she did this I let her wear panties and when she messed in those I put the diapers back on until she did it again- fortunantly there have only been a few accidents. As long as I don't bother her about the potty she does it on her own! It is a little stressfull leaving a 2 year old in control of potty training, but it has worked for her and even on this long trip to Texas is still doing well (not perfect, but well)! I am so proud of our Big girl!
Sunday, June 15, 2008
HAPPY FATHER'S DAY!
Cambria's SMILE! I caught it!
Welcome the world BRILEY THOMAS PERKINS!
Class of 1998! 10 Years WOW!
Thursday, June 12, 2008
Riding in the Golf Cart- more fun with Great Grandpa
Fun at Great Grandma and Great Grandpa's farm!
Avalyn tried to make friends with the kitty that lives on the porch, but this didn't last long once Avalyn was scratched. She does love animals, they just don't always feel the same way back.
Gavin on the swing. After just a few days on the farm he decided that he wanted to be a farmer when he grew up, he loved helping out Grandpa. They worked on the tractor, fed the animal, chased a fox, and of course every farmers favorite activity riding in the golf cart!
Cambria hanging out on the porch. She has not always like being outside (because of her eye's sensitivity to light and not being used to much heat), but if it wasn't too sunny and it wasn't hot she loved it. Fortunantly there were a few cooler days while we were there and she was able to hang out on the porch! Just in case you haven't noticed in the last few pictures of Cambria, her hair is falling out. I was kind of sad to see her beautiful dark hair start falling out a few weeks ago, but I am sure the hair that is coming in will be just as beautiful on her. This is common in babies and has nothing to do with her albinism, but it does look like it may be coming in blonde (I have always thought her hair might turn blonde, because of her light eye brows). I guess we will just have to wait and see, it is so exciting to watch her grow!
And of course one of our favorite things to do at Great Grandma and Great Grandpa's- NAP! For some reason it is a very relaxing place and everyone enjoys resting while you are there. I definantly enjoyed having someone to watch the kids while I caught up on some sleep myself- thanks Grandma and Grandpa!
Monday, June 9, 2008
IN TEXAS!
Monday, June 2, 2008
Cambria's glasses
The past couple of weeks have become more difficult with Cambria and her glasses. After a month of not being bothered by them at all, she is constantly trying to take them off. She ussually grabs at them when she is tired or upset and she has become quite fond of eating them. She is delayed in grabing things and putting them in her mouth, probably because she can't see very well, but she has found her hands and now her glasses. As her desire to chew on things becomes stonger (because of teething) she reaches for what she knows (not sees) and that is her hands and glasses. We are so thankful she takes a pacifier (Gavin and Avalyn never would) it does help distract her for a while, but she is not very good at keeping it in her mouth for long periods of time. We have to have our attention on her completely for her to keep them on her face and this is not always possible and when she is fussy there is no stopping her. I thought they might be getting too tight or not fitting right, so I took them in and they adjusted them, but nothing has changed she is still pulling at them. She still might not see well with them on, but they are primarily for the esotropia (her eyes crossing) and that seems to be getting much worse the more she takes them off. As her eyes develop more, hopefully they will be able to prescribe a more affective lense at helping her vision. Right now we are praying that they fix her esotropia or she will probably need surgery. We have noticed improvement in her right eye, but none has been seen in her left (we are anticipating surgery in that one). She has started to smile more at us, but only when we get right up to her face (nose to nose) and talk to her (she doesn't respond to just facial expressions). Please pray that Cambria keeps them on and that her vision and esotropia improves. I just imagine if she could talk she would say "babies aren't supposed to need glasses" and we just keep telling her "God made you extra special". Thank you so much for all your prayers!