Finn had an eye doc appointment today. I always get a little nervous for these visits, because I never know how they are going to go. It usually involves the doc telling me just how bad Finn's vision is...and no mother wants to hear that. To recap last time we were at the eye doc he said that Finn was probably concidered legally blind and that was best case senario. We know he can see light, but he wasn't sure if he could see anything else. The doc also said that based on what he observed that Finn's right eye was the dominant eye and that his left eye probably didnt see much of anything....
TODAY after the doc examined him he said, with a huge grin on his face, 'He can see. And not just light'. I was pretty confident in that already, but I always liked to be reassured by a doctor. He also confirmed that Finn can see out of BOTH eyes. Finn's eyesight has improved since the last time he saw him 6 months ago. The doc can't explain why this happened...it just did. Don't get me wrong...Finn's eye sight is still pretty bad...he is still saying that Finn is considered legally blind, but not as bad as what he thought 6 months ago. I am still over the moon by the news. Just another reason why Finn is a medical marvel! He is just so amazing!
Thursday, May 16, 2013
Baby steps for you, but big leaps for us
In the last few months I have noticed big changes in Finn. He really is growing up. For 23 months I have basically had an infant. Finn still drinks from a bottle that I need to feed to him, his sleep is still erratic, he is not mobile...so when I see changes in him I get so hopeful and happy that I feel like my heart could burst through my chest. Here are some of the new changes for us:
Car seat- This has always been a fight with us. Finn hated the car seat ever since he was alive...he would just scream bloody murder until you took him out. But in the last few weeks something has changed. Finn does not hate the car seat anymore. He just one day stopped crying in the car. He can even make it to my parent's house 2 hours away and not cry anymore. He will even fall asleep some times! This is HUGE progress for us. It was always a nightmare to go anywhere and now it's no big deal.
Stroller- This kinda went hand in hand with the car seat. But now he loves his stroller. He especially loves being outside. It is like is favorite thing to have the sun on his face and the wind in his hair. This is progress because now I can take him for long walks and he doesn't mind it...he will even fall asleep in the stroller.
Milk/Soy allergy- GONE!! Finn can finally have dairy!!! This was HUGE news for us. The formula that Finn was on was SO EXPENSIVE! But he is now officially off the formula and is drinking whole milk and he really likes it...especially when I add chocolate :)
Trunk control - Finn has strengthened his trunk control so much in the last couple of weeks. He only needs a little support when he sits on the floor AND his control helps him to be able to do this:
Car seat- This has always been a fight with us. Finn hated the car seat ever since he was alive...he would just scream bloody murder until you took him out. But in the last few weeks something has changed. Finn does not hate the car seat anymore. He just one day stopped crying in the car. He can even make it to my parent's house 2 hours away and not cry anymore. He will even fall asleep some times! This is HUGE progress for us. It was always a nightmare to go anywhere and now it's no big deal.
Stroller- This kinda went hand in hand with the car seat. But now he loves his stroller. He especially loves being outside. It is like is favorite thing to have the sun on his face and the wind in his hair. This is progress because now I can take him for long walks and he doesn't mind it...he will even fall asleep in the stroller.
Milk/Soy allergy- GONE!! Finn can finally have dairy!!! This was HUGE news for us. The formula that Finn was on was SO EXPENSIVE! But he is now officially off the formula and is drinking whole milk and he really likes it...especially when I add chocolate :)
Trunk control - Finn has strengthened his trunk control so much in the last couple of weeks. He only needs a little support when he sits on the floor AND his control helps him to be able to do this:
Standing on his own! Granted he can not pull himself up into this position, but he does not need his walker to stand anymore. He can keep his head up and maintain balance for a good few minutes. It's pretty great to see.
Finn has also added a new consonant sound to his babbling...L's. I swear he has said the word 'love' a couple of times, but every time I try to record him, he stops.
These changes might seem small to some, but they are beacons of hope for us. Finn continues to grow, learn, and change. And as long as he keeps doing this then I believe there is nothing this amazing kid can't do.
Sleep Study Results
We got the results of Finn's sleep study and it was not what I was hoping to hear. They said that all of Finn's oxygen and CO2 levels were normal, even though he snored 90% of the night it is nothing that concerns them. Well this upset me a little bit because 3-4 nights a week Finn wakes himself up by gasping for air or his snoring is so loud that it wakes him up. I still think he has sleep apnea, but he did not do this during the sleep study. So they will not treat him for sleep apnea. They did however think his startles/twitches were the reason why Finn does not sleep well... (which I agree) so they wanted me to try giving him iron supplements. Apparently this is how they treat restless leg syndrome and they think that is what Finn has...even though I know he doesn't. So I have been giving him iron for the past 3 weeks and nothing has changed in his sleep patterns...so we can scratch that off the list of reasons why Finn does not sleep. After dealing with this issue for 23 months I have some theories on why Finn does not sleep.
1.) Kids with neurological issues usually don't sleep well...maybe I will be dealing with this issue for the rest of my life...God I hope not
2.) Finn still can not roll himself over...whether it be from back to tummy or tummy to back. So when he wakes up after being a sleep for a few hours he wants to change position and can't get there by himself.
3.) I think his crib mattress is too hard for him. Finn has spastic CP which means he has really tight muscles and I do not think that a firm mattress feels good on his little body. Also he does really good in our bed which is a feather top mattress.
Even though Finn still is not the best at sleeping, I must say he has gotten so much better. He no longer gets up in the middle of the night to eat, which is great. Slowly but surely I think Finn will get there.
1.) Kids with neurological issues usually don't sleep well...maybe I will be dealing with this issue for the rest of my life...God I hope not
2.) Finn still can not roll himself over...whether it be from back to tummy or tummy to back. So when he wakes up after being a sleep for a few hours he wants to change position and can't get there by himself.
3.) I think his crib mattress is too hard for him. Finn has spastic CP which means he has really tight muscles and I do not think that a firm mattress feels good on his little body. Also he does really good in our bed which is a feather top mattress.
Even though Finn still is not the best at sleeping, I must say he has gotten so much better. He no longer gets up in the middle of the night to eat, which is great. Slowly but surely I think Finn will get there.
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