More Pictures!

New Pictures of Cambria in her glasses!

We are on day 3 of wearing glasses and things are going well. Improvement of her eyes is slow, but we were told it would take some time. She does look around and at things a bit more, I wish we could ask if she could see any better- well, I guess we could ask but we wouldn't hear much back. She still crosses her eyes most of the time, but hopefully it will improve before her next appointment at the end of June. She still doesn't mind them at all. After 2 days of sliding down on her nose I took them in and they put different grippers around her nose, things are much better (she did not like when we adjusted them). I had some success today on pictures. To avoid glare, I can't use a flash and it is hard to get a 3 month old perfectly still so there will just be a glare in some of the pictures. Avalyn has been great and hasn't bothered them at all, I bought her some new sunglasses and she is wearing them all the time! I hope these make you smile!

Cambria's first Pictures by Jessi!

Thank you so much for these precious pictures Jessi! We LOVE you!

New Pictures by Jessi!

These are some pictures taken by a good friend. Jessica (Jessi) Hegland is a photographer in Minn. and a life long friend of Kyle's. Her brother, Ryan, was Kyle's best man in our wedding. Ryan and Jessi come to visit several times a year and Jessi brings her camera and always does a wonderful job- no matter what kind of mood the kids are in. This time it was Avalyn who was difficult, big surprise she's 2 and owning it! These were taken when Cambria was about 3 weeks old, she still was not opening her eyes (just sleeping). We were happy to see a little smile in one of the pictures of Cambria, so sweet!

Cambria's 1st pair of glasses

That's my hand holding Cambria's glasses. She doesn't have a very big head- she has been in the 20% in head size since she was born (maybe that's why the smallest pair of glasses they had are still too big). They are definantly a conversation piece, we went to church, the mall, and Wal-Mart tonight and people stopped to talk to us at least 8 times (not to mention all the whispering and pointing)- it was a little strange, but I do admit she does look cute. It's is difficult to see in the pictures, but they are pink!

I will do my best to get some better pictures, without the pacifier. I took these at 10 pm after she had been wearing them for 5 hours. She was tired and very hungry- that pacifier was not coming out. She did well and didn't bother them at all- she isn't grabbing at things yet so I am sure that helps a lot. I don't think they bothered her, I was out all evening and when she finally got fussy I thought it could be the glasses so I took them off- she kept on screaming, but when I put them back on and took her out of the car seat she was just fine. Now the challenge will be, keeping our little dress up queen Avalyn from messing with them- not to mention the case is a little pink Disney princess purse (I might have to find a replacement case). I asked Gavin what he thought when he first saw the glasses and with excitement he said "she looks like Harry Potter." I was able to pick from 4 pairs and these were the smallest and yet the frames still look big on her little face, it will be neat to see her grow into them. They are custom fit on the side of her face and they can stretch the sides out as she grows (for a little while at least). Since she will always need glasses, it will be nice to have a bigger variety as she grows. Now it is time to pray that these work and she is able to focus without crossing her eyes.

The new play room!

I've been meaning to post these pictures for a while. As most of you know I am a painter, at least some times. I majored in painting in college and have been doing mainly murals ever since (6 years). I don't do too much these days, my primary job is being a mommy, but I've made sure to do my children's rooms and now a play room. We just finished our basement (I will post other pictures later) and we put a playroom for the kids down there. The kids loved the painting, now if I can get them to play down there- they are so used to being upstairs with me all the time, even though most of the toys are now down there they ussually aren't. I do enjoy sharing this gift God has given to me with my children!

More on Albinism

Thank you so much for all your prayers! We have learned a lot over the last couple days since Cambria's diagnosis. Most of our info has been from The National Organization for Albinism and Hypopigmentation (http://www.albinism.org/). I am sure there is more to learn once we see a genetic specialist- on June 26. We have been surprised by how rare this condition is and how small the possibility is of having a child with her condition. We are relieved to know that there is a good possibility that her condition will only effect her eyes, but the severity of her vision can be quite sad- and will be unknown till she is a little older. Total blindness is not the issue and we praise the Lord for that, but many with her condition are legally blind. Surgery to correct her eyes is limited and will never give her perfect vision. They describe people with Albinism as lacking fine detail in the cases of good vision. According to the web site "The lack of pigment during the development of the eye causes and abnormal development of the retina and affects the formation of the nerve pathways from the eyes to the brain, which causes decreased visual acuity or low vision that cannot be corrected to 20/20." You can read more about it at the web site, they explain things a lot better than I could. I went to pick out her glasses yesterday and we were surprised to hear they are $369 and insurance does not cover that. These glasses will hopefully correct the strabismus (her crossed eyes) and help the nystagmus (the twiching of her eyes). She cannot see without the glases, she is unable to focus at all. We are so excited to get them- hopefully in a week- and look forward to seeing her develop after them, we just want to see her smile at us. Kyle is going to try to fight our insurance on this one, but it does not look good. We can afford to pay for this pair, but we know that this is just the first of many pairs of glasses for Cambria. They have a 2 year warranty, but her head is probably going to out grow them in the first year. Please pray for Kyle as he works with insurance on this one- they would pay for surgery to fix her eyes, but not the glasses that can do that (preventing the surgery). Also, pray that these glasses work. Thank you so much again for all your prayers.

Avalyn cheering for brother

Avalyn was a little dissapointed that she didn't get to play soccer, but she stayed on the side line with Kyle, Cambria, and I and watched Gavin play. It was so cute- everytime Gavin came off for a break to get water she would hug him and talk to him. She LOVES her big brother and always has!

Gavin's First Soccer Game

Yesterday Gavin had his first soccer game. It was so much fun to watch. He loved it. He has always loved to run- he does laps in our house all the time. He has never played soccer, but did well when he actually found the ball (he often was on the wrong side of the field or running toward the net instead of the ball). The highlight of the game for us was when he made a goal, he was so excited. He was a little confused with why he didn't get a trophy, but was very proud of himself. The future looks bright for our little soccer player!

Gavin's 4th Birthday!

Gavin had his Birthday party on Sat. and had a wonderful time. We had a big group of friends over and just watched the kids run around the house (it was 40 degrees). Kyle's parents came to visit and his mom made Gavin's alien cake, it was one of the best tasting cakes! Thanks Grandma!

Update on Cambria's Eyes

A few pictures I took at the doctors office after they dialated her eyes and we were waiting to see the doctor again (she likes to stand up and pretend to walk).

Well, today was an eventful day. Gavin turned 4, had his first soccer game, and Cambria was seen by a pediatric ophtomologist. We were dealt some shocking news by the doctor, but not devistating. It was quite a little lesson in ophtomology for 2 people who have never worn glasses or contacts. She was diagnosed with Albinism, Esotropia, and Nystagmus- those are some big words! I will do my best to explain them a little better. Albinism is a genetic disorder, yes it is the same thing that Albinos have. The other 2 are common effects of Albinism and in girls (with dark hair and dark eyes) are often the only way to diagnose it. She has dark hair and darker blue eyes, so it is probably a different form of Albinism than the white hair and light eyes- there are several different forms. We asked the doctor if it was a mild form and to our surprise he said no it is probably just a different form. She lacks a lot of pigment in her eyes that most children have. The Esotropia is why her eyes are crossed most of the time, that is how she is trying to focus. The Nystagmus is why her eyes shake frequently. The albinism explains the extreme sensitivity to light that she has had since birth. Sensitivity to light will always be an issue with her eyes and possibly skin. There is the possibility that her form will only effect her eyes, to what extent we don't know. She will be getting glasses to hopefully fix the Esotropia and nystagmus. She will always wear glasses, unless she will be able to have surgery some day to fix her eye sight. We are going to be seeing a genetic specialist and hopefully learning more about Albinism and her form. She will have an MRI on May 6 to rule out anything else causing these issues. I am relieved she can see, but am concerned with how well she can actually see. She doesn't act like she can see much at all, hopefully the glasses will help that. We will probably not know the extent of her vision until she is a little older. Thank you so much for all your prayers. We will keep you updated. God is with us and working through us.

My little cheerleader

Avalyn wanted to put on her cheerleading uniform the other day, she was so excited. She loves dressing up! I don't think she really knows what a cheerleader does, it has been a long time since I've been one or even coached. I do miss those days, it has always been a passion of mine and someday I hope to coach again. This uniform was made by my mom my sophomore year of high school for my niece Hadley (she is now 13, wow time flies). We will see if she follows in mommy's foot steps, it will definantly be up to her (but wouldn't that be fun)!

Cambria's Eyes

Please pray for Cambria's eyes. At her 2 month appointment a few weeks ago the doctor was concerned about her eyes and gave us a referal for a pediatric opthomologist. She is not tracking, she doesn't respond to facial expressions, she doesn't focus on objects or toys, and her eyes are almost always crossed (if you haven't noticed in her pictures). She has always had trouble with keeping her eyes open for a long period of time, they were closed for the 1st 2 weeks of her life and she has continued to sleep for most of her day. We weren't too concerned and I didn't even bring her eyes up to the doctor, I just figured she was a little behind, but the doctor said it needed to be looked at. We are thankful that God has blessed us with the top children's opthomologist in town, despite the fact he doesn't take our insurance. It was a week long fight with our health insurance to use him, but after the only pediatric specialist on their list couldn't see her till May 16th they agreed to cover it. Don't get us wrong we love our free health care and are so thankful for it, but we needed someone who had worked with infants and since Kyle is deploying at the begining of May we wanted to get an appointment before he left. We have an appointment on April 15 and look forward to seeing what could be wrong and if there is a solution. We know she is not blind and as the concern has been brought to us she shows no others signs of autism or developmental delay. Their have been some good things happen since her appointment when she was 9 1/2 weeks. She has discovered her hands, she is much more content with sitting in a swing or chair and try to look at things for a little while, and she is finally staying awake for longer periods of time. She still has no ability to track, her eyes are still crossed (mainly the left eye), and she still struggles to focus on objects (sometimes it's as if she is in pain). We are so thankful for our little blessing, she is as sweet as can be. Thank you so much for all your prayers. We will update you with how God is working in this situation!

The Zoo

I took the kids to the zoo a week and a half ago. We LOVE our zoo and it had been quite a while since we'd been, so I decided to brave the place alone with the 3 kids! It is finally warming up here (at least on some days) and it is nice to get out. It was as if Avalyn had never been, she was so excited and has not stopped asking to see the animal. This was Cambria's 1st trip to the zoo and in true Cambria fashion, she slept the whole time. It was a wonderful day and hope it warms up again so we can return soon, with DADDY!