Sunday, June 29, 2008

For Grandma and Aunt Stacia!



This is for one of our blog's biggest fans, our Grandma (Daddy's mommy). Aunt Stacia bought this cute dress for Cambria when she was born and Grandma went and found a matching one for Avalyn! Cambria is finally big enough and they both wore them to church today. Avalyn was so excited to match her little baby sister!

Birds

2 of our trees have become popular for the birds to make nest in. Last year we had one in the front yard tree and that one is back along with a new one in the backyard. This year we have noticed that the birds that live in them are very protective and get very loud when they are approached. We figured they either had babies or eggs and sure enough they do. It is amazing how they have survived all the rain and bad weather we have had this summer and thankfully they all survived the storm on Fri. that took down many trees in the Omaha area!

This is the nest in our backyard with 2 robin eggs in it. They were so pretty I thought I'd take a picture.



Here is the nest in the front yard, there are 3 little baby birds in it. The kids have had fun watching them, when Daddy lifts them up to see.

Saturday, June 28, 2008

Sisters!




It's a little bit difficult to get pictures of Avalyn and Cambria together. Avalyn absolutely loves her sisters, but doesn't get around to staying still enough for pictures. I was happy to get these shots yesterday of them playing. Avalyn was thrilled to have Cambria in her favorite baby doll stoller, even if it was just for a minute (Cambria has definantly out grown all Avalyn's dolls). I can't wait to see our girls blossom into best friends!

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





We finally made it to a pool on our trip to Texas. It was the day we left and we took the kids to the pool in my sister's neighborhood. This was also the first time we've gone swimming this summer. The kids had a great time. Avalyn didn't like swimming last year, so it was wonderful to see her have such a good time. Gavin has always loved to swim. I thought Cambria would like it because bath time is her favorite- she could sit in the bath forever. The water was a little cold, so she wasn't a big fan and she has never liked the heat much so sitting by the pool wasn't her favorite. My sister got her to sleep and she finally relaxed for a little while in her car seat. We had a great trip to Texas, seeing family and old friends is always fun. It is good to be back home and in our own beds and of course to be with Daddy again! Thanks to everyone who helped me on our trip to Texas, it's not an easy thing to do alone with 3 kids for 20 days traveling across Texas. We Love you and Miss you all!!!!

Gavin and Hadley Video- No Handle Bars!

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


Play time with Mau Mau- and the baby dolls she brought back from Europe for Cambria and Avalyn

Meet cousin Briley!





It was wonderful to spend time with our family's newest addition. The kids loved having another baby around. Gavin wanted to hold him all the time! He sure is a cute little guy and we miss him already!

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!

Happy Father's Day Daddy! You are the Greatest! We LOVE you so much and miss you so much! Hugs and Kisses- Gavin, Avalyn, and Cambria

It was a little sad to not be with Daddy on father's day, but we were able to spend it with Grandpa! Here's a picture Mommy took of us watching golf with Grandpa! (Cambria was ready to eat- not take a picture, but oh well we tried)

Cambria's SMILE! I caught it!

I finally got it! A picture of Cambria's smile, isn't it so cute? She smiles more often now, but still only in reaction to your voice. It doesn't really matter why she smiles, it is just so wonderful to see her happy and expressing it. She has been keeping her glasses on a lot better, thank you for all your prayers! I figured out that she was teething after I saw a tooth coming in, it has already broken through the gums. Instead of taking them off because they were unconfortable she was taking them off to chew on. She still likes to chew on them, but if I treat the teething thing with tylonal, teething tablets, or a pacifier she seems to do a lot better. A full belly also helps- she is now eating oatmeal, sweet potatoes, apple sauce, bananas, carrots and pears. Carrots and pears were not her favorite- but she likes them better than the completely regected green beans and pees. This has also helped me keep up with her feedings, nursing was becoming more difficult and more often (I don't need more often). Thanks for all your thoughts and prayers- I hope this picture put a smile on your face!
Gavin and Cambria- so much LOVE!

Welcome the world BRILEY THOMAS PERKINS!

Congratulations to my little sister Kathryn and her husband Brian at the birth of their first child! Their little boy Briley was born yesterday June 14. He weighed 6 pounds 11 ounces and was 20.5 in. long. We look forward to seeing him this week, when we travel on to San Angelo. I will definantly be posting pictures of the little one and his cousins! We LOVE you so much Briley!

Class of 1998! 10 Years WOW!

This weekend has been crazy busy! What a wonderful time to see all my old school mates. For those of you who don't know I went to the same provate school from pre-school through 12th grade. Castle Hills First Baptist School and Church in SanAntonio, TX was my home for most of my life. My mother was and still is the children's minister at the church, which allowed my parents to afford to send us to a Christian school. I loved it and at times still miss it, when I return it still feels like home- even after so many changes. I graduated with 50+ great people (I can't remember the exact number, but they each hold a very special place in my heart). With such a small class, I still remember everyone's names and know something about each- even if weren't close. I do have a precious group of girlfriends that were in my wedding and still continue to remain close, despite the many miles that are between us. Besides my dear friend Anna, who is due with her first baby in early July, they were all able to come! After seeing everyone it filled me with so much joy, they are good people and it was wonderful to see them and to see how God has worked in their lives. The Lord has been so good to me over the past 10 years and this just reminded me that he has always been good to me and I wouldn't change a thing about the many years at Castle Hills! Thank you class of 1998 for such a wonderful weekend and such amazing memories! If you are wondering where are my pictures, I forgot my camera in all the craziness of figuring out what to do with my 3 kids and no mother in town. I am sure my friends will email me some and I will try to post them.

Thursday, June 12, 2008

Riding in the Golf Cart- more fun with Great Grandpa





The kids always love riding Grandma's golf cart and Cambria got to join them this time. She was very content in Grandpa's arms!

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!

The kids and I made it to Texas this past Fri., thanks to the help of my dear friend Lauren who flew up to Omaha to help me drive down! We were at my sister's house, in Denton, for the first couple of days and are now enjoying east Texas at my Grandparents till we move on down to SanAntonio on Tues. or Wed. night. After a week in SanAntonio we will head on over to San Angelo to see my other sister Kathryn, her husband Brian and hopefully by then my new nephew Briley. I will hopefully get some pictures up when I get to my parents house in SanAntonio. The kids are having fun and loving being with family- wish we were able to see them more often.

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!


Flooded Basement

Well, this past Friday around 3 am we awoke to rain, and lot's of it. This wouldn't be all bad, but we had our guest room in the basement flood the week before and we new this was going to be even worse. Our eggressed (I have no clue how to spell that word) windows have been incomplete since Oct. because of winter and failure of the workers to show up and finish it once it warmed up. For those who don't have basements, it is a window in the ground that allows us to count these rooms as bedrooms when we sell the house. I put a picture of the one in our play room. The problem isn't the window or the area inside the metal barrier, but outside the metal part- there were still big holes in the ground with the sprinkler system exposed (and messed up by the people who dug the holes). I don't know exactly how it all works or how this actually happens, but with all the rain almost the entire basement flooded through the 2 eggressed windows. After Kyle had worked his best to stop the water (he did the first night) it was evident we needed professional help and we were happy when they showed up around 4:45 am. They suck up the water, removed the carpet pad, and left humidifiers and fans to dry everything up. The carpet is fine and nothing is permanently damaged, just one big expensive pain! We are not responsible for any of the damage and our contractor has agreed to pay for it. Kyle worked all weekend to fill the holes with durt, because we are supposed to have more rain this week and realized we couldn't count on the workers to show up. There's a picture of everything in the basement on the small portain of carpet that survived. We shouldn't have any more issues with flooding and we look forward to having a finished basement again. We are so thankful nothing was damaged! Please feel free to plan your trips to Omaha to come visit us- the guest room is waiting!