We took Paige to the eye doctor for follow-up today. The report that we got couldn't have been better. She is doing great! I think she is doing better than "Dr. Doom and Gloom" ever thought that she would.
The amplitude of her nystagmus has not gotten any worse, if anything it is better. By the grace of God, they way that it is easiest for her to see is by looking straight ahead, looking to the right does appear to be a challenge but that is way better than the opposite scenario. She does not need glasses right now. She uses both of her eyes equally well. There is no need for surgery. He is not going to see us again for 6 months (the receptionist said "she must be doing really well").
We are so thankful!
Showing posts with label nystagmus. Show all posts
Showing posts with label nystagmus. Show all posts
1.05.2009
8.28.2008
MRI done
Paige had her MRI yesterday. She handled the procedure really well. She was really sleepy last night when we got home and grumpy when she woke-up but seems to be back to herself today. She is such a sweet, sweet girl!!
We stayed with her until the medicine made her really, really sleepy and then we had to leave for the nurse to start her IV and do the procedure. Leaving her was so hard! I don't ever want to have to do that again. I can't decide if being a nurse helps or hurts in those situations. Leaving your baby, not easy!! Kim said that I would never make it if one of our kids had to have major surgery and he is right.
We should get the results in the next couple of days. Waiting, not easy!!
We stayed with her until the medicine made her really, really sleepy and then we had to leave for the nurse to start her IV and do the procedure. Leaving her was so hard! I don't ever want to have to do that again. I can't decide if being a nurse helps or hurts in those situations. Leaving your baby, not easy!! Kim said that I would never make it if one of our kids had to have major surgery and he is right.
We should get the results in the next couple of days. Waiting, not easy!!
8.11.2008
Nystagmus
We visited the pediatric opthomologist today and found out that Paige, hopefully, has congenital nystagmus. I say hopefully because we go for an MRI on the 27th just to be sure that the nystagmus is not coming from a brain tumor. Kim and I and the doctors are all very hopeful that the later is not the case.
During our visit with the opthomologist today her eyes were assessed and some potential causes of the nystagmus were ruled out. The doctor also told us that as of today she does not need glasses but that will probably change in the future.
So, how did we get to today...Kim and I had noticed from an early age that Paige's eyes would drift occasionally and not always track together. I mentioned this at her 2 month check-up in Virginia and the pediatrician assured me that it was nothing to worry about and that it would correct with age. Some time after her 2 month check-up I noticed that her eye's were tracking together again but that sometimes they would twitch back and forth. I just thought it was coming from her eye muscles getting stronger. The twitching appeared to be getting better (I still believe that it is less dramatic than when we first noticed it). At her 4 month check-up, back home, our favorite pediatrician ever, noticed the nystagmus. He recommended that we see the opthomologist to be evaluated.
Until today, I had the hope that I was just imagining things. Until today, I had the hope that this would all just go away. Until today, no one had said to me that "we will decide if she will be mainstreamed for school". Until today, no one had said the to me "she might have to learn braille". What a day.
The Mommie in me instantly started crying, how could this be? Then the Mommie in me instantly wanted to know what I could do to help fix the problem. The answer I received, nothing. We just have to see how things evolve. What do you mean, nothing? Surely there is some therapy that I could be doing with her to help her vision develop as normally as possible but they tell me no.
All I can do is pray. All I can do is pray. Pray that her visual acuity will be the best it can possibly be. Pray that her brain will determine the best way possible to help her see as normally as possible. Pray that children and their parents will not judge her based on her wiggly eyes. Pray that her heart will be protected and prepared for the day when kids are mean to her because she is different. (Pray for the first kid who teases her because of her eyes, that I will not kill them and that they will see the next day, kidding, sort of).
This is the beginning of a long journey. When we were given Natalie's diagnosis (congenital hypothyroidism), we were given a solution and a known path. Give her this pill every day for the rest of her life and she will be FINE. That is not the case for sweet Paige. We do not know what the future will hold. She could be very close to normal, she could be legally blind. She could require eye surgery some day, she could never have to have eye surgery. We just don't know, that feels the hardest right now. From everything that I have read, every case is different.
Please join me in praying for Paige. As I have been thinking today I have been reminded that none of us as parents know what the future holds for our children, we just have a little extra something to worry about, as added element of unknown. Even if Paige didn't have wiggly eyes I am sure that kids would be mean to her but now that seems so much more real. Even if Paige didn't have this who knows what tomorrow holds for us/her. Having a "diagnosis" , a known problem just makes tomorrow seem that much more challenging.
While I was talking to my mom today, I was sitting on the front porch and watched a beautiful butterfly fly through the air from flower to flower. The first thing that came to my head was, I wonder if Paige will ever be able to see that. I hope so. I hope she will be able to see and appreciate the beauty of God's creation. That is my prayer.
During our visit with the opthomologist today her eyes were assessed and some potential causes of the nystagmus were ruled out. The doctor also told us that as of today she does not need glasses but that will probably change in the future.
So, how did we get to today...Kim and I had noticed from an early age that Paige's eyes would drift occasionally and not always track together. I mentioned this at her 2 month check-up in Virginia and the pediatrician assured me that it was nothing to worry about and that it would correct with age. Some time after her 2 month check-up I noticed that her eye's were tracking together again but that sometimes they would twitch back and forth. I just thought it was coming from her eye muscles getting stronger. The twitching appeared to be getting better (I still believe that it is less dramatic than when we first noticed it). At her 4 month check-up, back home, our favorite pediatrician ever, noticed the nystagmus. He recommended that we see the opthomologist to be evaluated.
Until today, I had the hope that I was just imagining things. Until today, I had the hope that this would all just go away. Until today, no one had said to me that "we will decide if she will be mainstreamed for school". Until today, no one had said the to me "she might have to learn braille". What a day.
The Mommie in me instantly started crying, how could this be? Then the Mommie in me instantly wanted to know what I could do to help fix the problem. The answer I received, nothing. We just have to see how things evolve. What do you mean, nothing? Surely there is some therapy that I could be doing with her to help her vision develop as normally as possible but they tell me no.
All I can do is pray. All I can do is pray. Pray that her visual acuity will be the best it can possibly be. Pray that her brain will determine the best way possible to help her see as normally as possible. Pray that children and their parents will not judge her based on her wiggly eyes. Pray that her heart will be protected and prepared for the day when kids are mean to her because she is different. (Pray for the first kid who teases her because of her eyes, that I will not kill them and that they will see the next day, kidding, sort of).
This is the beginning of a long journey. When we were given Natalie's diagnosis (congenital hypothyroidism), we were given a solution and a known path. Give her this pill every day for the rest of her life and she will be FINE. That is not the case for sweet Paige. We do not know what the future will hold. She could be very close to normal, she could be legally blind. She could require eye surgery some day, she could never have to have eye surgery. We just don't know, that feels the hardest right now. From everything that I have read, every case is different.
Please join me in praying for Paige. As I have been thinking today I have been reminded that none of us as parents know what the future holds for our children, we just have a little extra something to worry about, as added element of unknown. Even if Paige didn't have wiggly eyes I am sure that kids would be mean to her but now that seems so much more real. Even if Paige didn't have this who knows what tomorrow holds for us/her. Having a "diagnosis" , a known problem just makes tomorrow seem that much more challenging.
While I was talking to my mom today, I was sitting on the front porch and watched a beautiful butterfly fly through the air from flower to flower. The first thing that came to my head was, I wonder if Paige will ever be able to see that. I hope so. I hope she will be able to see and appreciate the beauty of God's creation. That is my prayer.
Subscribe to:
Posts (Atom)
