Dalan can see! He plays Soccer! He rides a bike! He is our superstar! He reads normal size print and can even read scriptures. God has blessed us! God is a god of miracles! Let it be sufficient for the time being to say that our Father in Heaven can do miracles and he did a miracle with our son!

Our Son is Legally Blind

I took Dalan to his 4 month check up last Friday (March 2nd) that is when the doctor noticed that something was wrong with Dalan's eyes. He has a problem focusing and his eyes constantly move back and forth. I noticed the eye movements shortly after he was born but the thought never crossed my mind that something was wrong. We just thought he was looking at the world and taking everything in. He is and always has been such a happy baby. The doctor said he had a Nystagmus:/nɪˈstæɡməs/ is a condition of involuntary eye movement, acquired in infancy or later in life, that may result in reduced or limited vision.[1] (Wikipedia).

But she did not know more than that or what was causing the problem. His development in every other way is completely normal and on track. She said it could be a number of things including cancer, brain tumor, or just that he was born blind. Our next steps were to see multiple specialist and possibly an MRI to check his brain.

The hardest part was the unknown. As we found out on a Friday that there was a problem we couldn't get any answers or see any specialist till the next week. The weekend of wondering was an emotional roller coaster. Not knowing if our baby would need brain surgery or just a pair of glasses. We fasted and prayed for the best all weekend.

This morning at the ophthalmologist we found out our son has one of two conditions that are very similar and time will tell the extent of it. We believe he has Ocular Albinism type 1 (OA1)
also called as Nettleship-Falls syndrome, is the most common type of Ocular Albinism with a prevalence rate of 1:50,000.[1][2] It is an inheritable classical Mendelian type X-linked recessive disorder wherein the retinal pigment epithelium lacks pigment while hair and skin appear normal.[3][4] Since it is an X-linked disorder, it occurs mostly in males, whole females are carriers unless they are homozygous.[5] (Wikipedia) So it is a genetic disorder. Alan and I are both carriers of the gene. If we have another son we think that it is a 50/50 chance that he would also have it. A girl would be less likely to have it. Now knowing what we know, My eyes have always been very sensitive to the light and I often get headaches from light and Alan always has horrible red eye in pictures.

We are grateful to just have answers to our many questions. Prayers have been answered! Dalan's condition is not life threatening, he does not need an MRI or numerous medical test done at this time.

We found out that Dalan is legally blind, because most that have this condition are. He does not have enough pigment on his retina which is why glasses or contact lenses probably will not help, although they do help in some cases. It is like the film of a camera, the retina of the eye, is not working correctly, but the lens, or the cornea of the eye is. In Alan's case his retina is fine, however his cornea is not working which is why Alan needs glasses. In Dalan's case his retina is not working, but his cornea is.

Legally blind does not mean that he can not see at all. Dalan can see. We know he can see light and can tell the difference between light and dark. We just don't know exactly how well he can see. As he gets older and can speak we will learn more about his vision. In my opinion, it is like looking from the top of a football stadium at the game possibly through a foggy pair of non prescription glasses. Where as everyone else sees the game at row 1 or row 10. Dalan will need vision assistance is school, not glasses but large print and a magnifying glass. Many people with this condition can read. He will probably never drive or be able to play ball sports.

Things we know Dalan will always be able to see

The love of his Heavenly Father and Savior Jesus Christ

The love of his parents

The love of his sister

The love of others in his life, including friends and family

The kindness of a complete stranger

The help of a teacher

The light of Christ

The joy that comes from living in this world.

The answer to prayers

The truthfulness of the gospel of Jesus Christ

We are grateful that the Lord has blessed us with two beautiful and amazing children. No matter what difficulties may come we love them with all our hearts and thank the Lord daily for them.

Here is a video we found that really helped us to understand what this all means and how it will affect our lives.

Being legally blind (Ocular Albinism)

Being Legally blind (Ocular Albinism) FAQs!!

Hailey is 2 and a..... well, I finally got her pictures taken

Grandma

My grandma, my mothers mother passed away. It was a sad but joyous time. Her sweetheart died 20 years ago and she has wanted nothing else than to just be with him for atleast the past 10 years, that I can remember. We were all sad that she is gone and no longer with us, but happy that she is finally happy and in heaven with her sweet husband. By a great mirical and many blessings (Grandma Higginbotham and her friends in high places) we were all able to fly to Salt lake last minute for the funeral. Grandma H has friends that work for Delta and were graciouse enough to give us some buddy passes to fly standby at a fraction of the cost. It was a great thing to be there with all my family. Love you Grandma Evelyn Virginia Castel Durfee

This event brought family together that hadn't all been together in a long long time. With all the moves that my family has made in the past few years it has been hard to see each other, (as we live thousands of miles away.) But mom, the 3 of us and Brett, Ashley and Jerzie were all together for a few days. It was faboulose! Hailey's one and only cousin lives in Montana so she only gets to see her and play about once a year. It was so fun to watch them play.

New / New

As you have probably noticed I am playing catch up on my blog, back dating all my recent posts. I have been horrible at it. Trying to do better.

February was a month that brought a lot of change and excitement to our lives.

Alan got a new job working for Thompson Company, an engineering firm here in Georgia. It is located in Norcross which makes it about an hour commute each way due to traffic. The commute is the only down side to the job though. It is a real "grown up" job!!! With medical benefits, 401k, paid vacation and everything! It is amazing, we are so grateful that he got this job. He also works M-Th 8-6 and then has a half day on Friday which is nice, but it is also hard because with the hour commute each way he is gone 12hrs a day and often doesn't get to see Hailey before she goes to bed, and she isn't up by the time he leaves. It could be much worse though and it is always nice when he is home on Fridays. Now with a steady job we hope to find a house closer to his office. Things are going well for him at work. It is hard, as any new job would be. It is nice though that he can learn from engineering from those around him and he can teach them Revit.

February also brought exciting news about a new little one joining our family. This is the ultra sound picture from my first appointment, just under 7 weeks so the baby is just a tiny little bean. It was amazing how reassuring it was to see the baby and actually hear the heart beat. Due date is October 18th, one day before my birthday. Hopefully this baby will come one week early like Hailey did so we have a little bit of space between birthdays.