Doctor's Visit

I can’t believe it but Ryker is now 9 months old.  He is crawling and pulling up.  He learns something new and changes DAILY.  He is into EVERYTHING but I wouldn’t change a thing.  Every day is a new adventure but it is so much fun…and tiring!  

I have been waiting for this past Tuesday to come for the last 6 months.  It was our appointment with Ryker’s Ophthalmologist.  I guess you could say it was our first REAL appointment.  We had been to the Ophthalmologist before when Ryker was 7 weeks old for the diagnosis and again at 3 months to confirm the diagnosis but he was so young the doctors couldn’t tell us much.

So Tuesday was FINALLY here.  I was nervous and excited all at the same time.  I was excited to tell Dr. Packwood the improvement we have noticed in Ryker’s vision.  I am amazed sometimes at what he can see.  I also had so many questions that I wanted answers to but most importantly how much vision would Ryker have?  I guess I was cautiously optimistic that the doctor would be able to answer our questions.  I already knew that TIME is the only way we can get any definite answers.   After Dr. Packwood met with us and examined Ryker he told us that he estimated his vision will be anywhere from 20/100 to 20/150 as a child and 20/80 to 20/100 as an adult.  Of course this is just an approximation but it was fabulous news!  I was thrilled!  Slade and I have also noticed that Ryker’s left eye turns in sometimes.  Dr. Packwood agreed that it does cross in but he thinks he may be settling into a null point.  A null point is basically how Ryker positions his head to get his best line of sight.  It is different with every person that has a nystagmus.  For example, Ryker may tilt his head down and slightly to the left or he may just tilt his head to the right.  In a few years Ryker can have surgery to straighten out his null point.  The doctor will measure his null point and then they will go in and adjust the eye muscles so his best line of sight will be when he looks straight ahead.  Surgery is optional and will be several years down the road.  We will reevaluate his left eye when we go back to the doctor in December.  If his left eye is definitely turning in and doesn’t have anything to do with his null point then he will have to wear an eye patch.  We will go to the Ophthalmologist every 6 months. 

Dr. Packwood referred us to The Retina Foundation of the Southwest to do Teller Acuity tests.  These tests can help us find out what Ryker’s vision is currently and better predict what it will be in the future.  The Foundation is located in Dallas.  I’m so thankful that such an amazing center with some of the leading researchers and specialists is located so close to us.  We were able to schedule our appointment with The Retina Foundation for June 24.  I’m extremely excited about this appointment.  Slade and I are praying that Ryker’s vision continues to develop and improve.  So at the moment we still don’t know much about Ryker’s vision but I do know that his vision is NOT slowing him down at all.  He is an amazing little boy!  I’m so proud to be Ryker’s mommy!    

Without A Doubt...

I am beyond excited to write this post!   I feel like I need a drum roll…

This past week Ryker started reaching for things.  If you hold a toy in front of him he reaches for it and when you hold him he will pat your face!  I can’t tell you what an amazing feeling this is!  It’s the first time that I can say without any doubt that Ryker saw me!  He finally saw his mommy!  I get emotional every time I think about it because I never knew if he could see me.  I know he can sense a lot just by our voices but there is something so sweet about KNOWING he saw me.  It is a definite sign that his vision is improving and it should continue to develop.  Praise the Lord! 

This definitely gives us a renewed sense of hope.  We are having so much fun watching Ryker grow and develop.  In a strange way I think knowing that Ryker has OA is such a blessing.  We try not to take the simple things for granted.  I’m amazed each and every day at what Ryker CAN do.  Slade and I talk out loud a lot about what we are doing because we don’t want him to miss out on anything.  We both sing to him a lot.  We make up silly songs about our daily activities.  It’s our way of making Ryker a part of everything.  He’s old enough now that he just wants to know that we are there.          

We recently met Ryker’s vision teacher.  She is awesome!  She will come to the house twice a month for Rye’s therapy.  At therapy we discussed what he might be seeing (this was before he started reaching for things).  She said that he could see light and shadows and probably blurry shapes or blobs.  I know he can’t see a clear image of me but I must say I have never been so excited to be a big blob!  I’ll take whatever I can get, better to be a blob than no blob…I think!!  

I want to thank everyone for their sweet comments after I started my blog.  The response was truly humbling.  I appreciate all the calls, comments, texts, and e-mails.   I was blessed by how willing so many of you were to share with me your own struggles and how God helped you through those times.  I am learning through all of this that family and friends hold our hand through life’s struggles but God carries us.  He is the one that gives us the strength to face all that we must face.  How comforting!  I think it’s important to share all that God has done in our lives.  It’s a wonderful way to grow in our relationship with Him. 

Where to begin…

First of all, I want to say I am so grateful that God has blessed Slade and me with a beautiful baby boy named Ryker.  What a wonderful gift!  As I’m writing this I’m sitting in the floor watching Ryker roll around and play and the only thought that comes to mind is perfection…sweet, sweet perfection.  He is cooing and smiling, such a happy baby.  I often catch myself watching him and wondering what he’s thinking about and what God has in store for him.  

On October 21, when Ryker was seven weeks old, he was diagnosed with Ocular Albinism and nystagmus.  According to NOAH (National Organization for Albinism and Hypopigmentation) Ocular Albinism is an inherited condition in which the eyes lack melanin pigment causing reduced visual acuity and sensitivity to bright light.  Nystagmus is the involuntary back-and-forth eye movement of the eyes.  Ocular Albinism (OA) sounds a lot scarier than it actually is and it is important to remember that it is not a disease of blindness.  Ryker will see.  He will be legally blind but he WILL see.  It takes babies with OA a little longer to develop their sight so at the moment (at 4 months) the only thing we know he can see is light.  He doesn’t follow objects with his eyes although recently we have started noticing him focusing on some objects.  While this has only occurred a few times we are very encouraged and excited about this.  So what may seem as a small milestone for some is a BIG victory to us. 

Like I said above OA is inherited.  My dad also has OA and I carry the gene.  This is something I have known since I was very young.  Because of the way the disease is inherited we knew if I had a little boy he would have a 50% chance of having the disease and if we had a little girl she would have a 50% chance of carrying the gene and passing it on to her children.  Slade and I never questioned having children.  It is something we prayed about and had such a peace about. 

I would like to take this time to brag on my dad.  Despite the fact that he is legally blind he is a great carpenter, college educated, drives, traveled Europe, hunted and played sports when he was younger and much more.  He hasn’t let his disability hold him back.  I would say if anything he used it to help motivate him and give him the drive to accomplish everything he has set out to achieve.  He is the most determined (and stubborn) person I know.  I think knowing what kind of man my father is and seeing what he has accomplished helped us know that if we had a little boy with OA that he would be okay. 

Obviously, if it was my choice I wouldn’t have chosen for Ryker to have this disease and we know because of the disease there will be challenges he will face.  But the way we look at it is that while we know he will face hardships because of the disease, it isn’t something that should keep him from reaching his goals.  The bottom-line is with or without the disease he is a HEALTHY, happy little boy.  What else matters?  Will he ever be a fighter pilot or a racecar driver?  No, but honestly as a mother I don’t want him to be those things anyway…too dangerous!  There are a few things that OA will hinder Ryker from doing/becoming but not much.  I know someday he may be made fun of because his eyes move back-and-forth or he has to sit at the front of the classroom but Slade reminds me that if it wasn’t his eyes/vision it would be something else.  I have to remember I can’t control every situation Ryker is in or protect him from everything but as a mother it doesn’t mean I won’t try.  I would like to share a quote from a mother whose son also has OA.  It sums up how Slade and I approach this situation.  “The bottom line is I am the mother of a son; a diagnosis doesn’t change who he is or who he wants to be.  It changes how I as a parent, find the opportunities for him to get where he wants to be.”       

There has been a lot of confusion about Ryker and what he faces.  Again, Ryker will see.  The question is not if he will see but how much vision he will have.  We pray that our son will have the best vision possible with OA which is 20/60.  We know that God is in control and because of that nothing is impossible.  

I think the hardest and most hurtful part of it all is that some people that knew about the possibility of us having a child with OA didn’t think we should have children.  Hurtful things were said.  I’m still struggling with forgiveness and resentment and I believe it will be something I will continue to struggle with.  It’s hard to see people love on your child after they thought you shouldn’t have children because they may be “flawed”.   Looking at him now (he’s sleeping now…so peaceful) and I can’t imagine my life without him.  He has already been such a huge blessing to us since he was born just 4 short months ago. 

Slade and I would love for you to join us in praying for our son.  Our prayer is that he will embrace his condition and never let it define him or become an excuse, rather that he will use it to motivate himself to accomplish all that God has in store for him.  We pray that he understands that God has a plan for his life.  Something I hold on to and pray that someday Ryker will understand is that God doesn’t make mistakes.  We are all God’s creations.  We are all different and unique and we all have our individual battles we will face.  That’s life.   

I want to use this blog to share our journey, the ups and downs, the milestones Ryker achieves, and the victories we experience.