First off, we've been blessed with the most amazing sweet angel boy. We keep getting more and more smiles out of him- bigger and brighter each time! He has the biggest wide mouth smiles... I try my best to capture them when I get them! :)
Simply Precious
I love this one because he looks like he's winking! ;)
This next is my new favorite!! How can you not love this precious face. His beautiful smile, big blue eyes, sparkling eyelashes, and of course the shirt is sooo very fitting :) I call him my angel boy now, because I was told I was given an Angel Baby by another mother of a little boy with albinism- and I thought it was the most fitting name ever for out little blessings!
Recently, I have been busy getting connected with various resources, all of which makes me so excited! First, we're members of NOAH (National Organization of Albinism and Hypopigmentation). This organization has ALREADY been unbelievably amazing to us. I've been able to speak with a rapid responder (another mother of a child with albinism who calls new members of NOAH to answer questions and to encourage). The conversation was approximately an hour long and I enjoyed every minute. She was great at answering questions, sharing stories from her experiences, and telling me how blessed I am and how blessed our family will be through raising Elijah :) Through NOAH- I have been able to connect with an absolutely amazing mother. While emailing each othere we have learned that we have SOOO much in common. Her husband and her live in Lolo, MT (approximately 15-20 min away). They are a young couple who have a 1 year old little boy with albinism. We are both thrilled to get connected and we're planning on meeting the family over football and pizza next Sunday!!! YAY!
We are constantly reminding ourselves how Good GOD is! He is not far away and will not leave us alone through this wonderful journey we've been blessed with!
Another resource I've been working on is getting hooked up with Early Childhood Intervention Services here in Missoula. We're working on the intake process and once this is finished we'll get set up with a Family Support Specialist who will be able to visit us and work with Elijah 2 times a month as he develops and changes! I'm really excited about this! The ophthalmologist did put in a referral for us to get connected with the MT School for Deaf and Blind. So, I'm sure this is something we'll be learning more about in the near future.
Speaking of ophthalmologist, our appointment on Friday went well. I guess, it went as good as I expected it would go. I tried going into the appointment ready for anything and to not be upset if I didn't get answers I hoped for. Overall, I think I knew almost everything the doctor told me. I had obviously done more fair share of research on the topic and educated myself as much as possible. Basically- he confirmed the diagnosis of Albinism. He's almost positive Elijah has Oculocutaneous Albinism- simply put- he has lack of pigment in his hair, skin, and eyes. Unlike Ocular Albinism which only effects the eyes. He tested his eyes and is fairly certain he can't see much of anything right now, but he also shared with me how difficult it was to know for certain on infants. Just because Elijah isn't focusing on objects and isn't appearing to be "looking" at them because his eyes move so much, he may very well be seeing them, we just can't tell right now. He said his best guess is that Elijah will have 20/200 or 20/400 vision- legally blind. BUT- The good news is- Albinism is not a degenerative eye disease. It can improve with time, and does not get worse with time. SO- our goal is to remain positive- because we do not know what Elijah's eyes do and how they will change! We talked about 2 surgeries that are possibilities. The thing they do will be to lessen the amount of nystagmus (eye shaking). Not all people with albinism need them and they are not done unless the ophthalmologist feels it will truly help him. Also, there is a chance he will need glasses. But, unlike most vision problems, glasses do not fix the low vision caused by albinism. They do help some, and we will continue to test Elijah over time and the doctor will decide if and when we should try glasses. Dr. Murdock was great with Elijah and very kind to me. I felt like I could trust him and feel comfortable with him, which is obviously necessary because we'll be seeing a lot of each other as Elijah grows! We already have our next appointment set up for December 13th.
Our goal for that appointment is for Elijah to show some interest in trying to focus on objects/toys/faces! Elijah has already been given new toys from family to help his development- toys with bright lights and sounds and contrasting colors and textures are the best! Our tiny toy basket is already over flowing and I can only imagine it getting worse with time! ;-)
We are waiting to hear back from the Pediatric Specialty Clinic in Missoula on how to proceed with genetic testing on Elijah. We have been encouraged by the ophthalmologist and our pediatrician to do a genetic blood test on Eli in order to determine the exact type of Albinism. Mostly, to rule out more serious types of albinism which can cause bleeding and immune system problems!
Well, I think that is what's been goin' on in our lives recently! Colin is busy, busy keepin' his great grades and rank in his class! He also is in touch with work at the law firm again and will take assignments from them as they give them and he can handle the work load! He always amazes me with his amazing work ethic and dedication but never forgets his family. He loves coming home to hold and chat with his little buddy and is always willing to help with dinner or dishes. Now THAT is a great man/husband/father! :) How lucky am I?? I start work next week... ready or not!
For now I'm savoring the last few days of NO work and ALL mommy!!! :)
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