So tired after our early morning. I wish I could have knocked out like this at 10:00 in the morning.
So me and Tegan had a very big day today. First we had to get up very early and those of you who know me know that once I get Rylee ready for school and her and Paul out the door, me and Tegan go back to bed and sleep most of our morning away. I know, I need to get out of doing this but it won't be much longer before he doesn't care to snuggle with me like that anymore so I am just going to enjoy it.
Anyways on to our day, we got up and had to be at Athens Regional Pediatric Rehab at 7:30 this morning. I finally feel like I have met the right person. She is a wonderful experienced physical therapist who sees a lot of potential in Tegan. She knows a lot about his eye condition (Nystagmus) and has actually treated infants and kids with this before. She knows all about the visual problems and the fact that to them their world is constantly moving. She was very impressed with him and not to ring my own bell but she was very impressed with all the research I have done on his condition. For the first time I have hope that just maybe the Nystagmus is the only thing wrong with him. She seems to think that with Physical Therapy and Occupational Therapy he will get caught up pretty quickly and may even be pretty close to target for walking. With Nystagmus walking is one of the hardest things for a child to learn b/c there are balance issues and to them the floor is moving so it is hard to gain his footing. But once they learn they figure out how to adjust. So with physical therapy maybe he won't continue to fall behind. He was very pleasant at the appointment and seemed to really take to a lot of the things that she was doing. The only problem is that she has to get it approved with the insurance and she said that it may be very hard to get approved but she will do everything in her power. So it will take about 2 to 3 weeks to even know if he gets approved. If he does get approved he will go to physical therapy twice a week and occupational therapy once a week. She said he shows signs of being weaker on the right side of his body which could possibly mean that his vision is limited when he looks to the right side. So she will first work on that and also him holding toys.
On a different note we had a representative from the states Early Intervention Program come to evaluate him for possible extended therapy or to do his therapy in our home just in case the insurance doesn't approve the Rehab. But that was the total opposite experience from earlier this morning. This lady knew nothing of his condition and couldn't say who our therapist would be or if any of their therapist know anything at all about Nystagmus. I was not impressed at all. My hope is that we get approved for the other therapy even though it means that I will have drive him to Athens three times a week instead of having the therapy in our home. It will be worth it to me.
Poor fellows day was all screwed up and tonight he was so tired that he could hardly drink his bottle and was screaming (fighting sleep) but now he is knocked out so hopefully me and him can have our peaceful day tomorrow. Note to those who worry about me losing sleep...I will never make another physical therapy appointment that early in the morning, for Tegan's sake and mine.
Anyways on to our day, we got up and had to be at Athens Regional Pediatric Rehab at 7:30 this morning. I finally feel like I have met the right person. She is a wonderful experienced physical therapist who sees a lot of potential in Tegan. She knows a lot about his eye condition (Nystagmus) and has actually treated infants and kids with this before. She knows all about the visual problems and the fact that to them their world is constantly moving. She was very impressed with him and not to ring my own bell but she was very impressed with all the research I have done on his condition. For the first time I have hope that just maybe the Nystagmus is the only thing wrong with him. She seems to think that with Physical Therapy and Occupational Therapy he will get caught up pretty quickly and may even be pretty close to target for walking. With Nystagmus walking is one of the hardest things for a child to learn b/c there are balance issues and to them the floor is moving so it is hard to gain his footing. But once they learn they figure out how to adjust. So with physical therapy maybe he won't continue to fall behind. He was very pleasant at the appointment and seemed to really take to a lot of the things that she was doing. The only problem is that she has to get it approved with the insurance and she said that it may be very hard to get approved but she will do everything in her power. So it will take about 2 to 3 weeks to even know if he gets approved. If he does get approved he will go to physical therapy twice a week and occupational therapy once a week. She said he shows signs of being weaker on the right side of his body which could possibly mean that his vision is limited when he looks to the right side. So she will first work on that and also him holding toys.
On a different note we had a representative from the states Early Intervention Program come to evaluate him for possible extended therapy or to do his therapy in our home just in case the insurance doesn't approve the Rehab. But that was the total opposite experience from earlier this morning. This lady knew nothing of his condition and couldn't say who our therapist would be or if any of their therapist know anything at all about Nystagmus. I was not impressed at all. My hope is that we get approved for the other therapy even though it means that I will have drive him to Athens three times a week instead of having the therapy in our home. It will be worth it to me.
Poor fellows day was all screwed up and tonight he was so tired that he could hardly drink his bottle and was screaming (fighting sleep) but now he is knocked out so hopefully me and him can have our peaceful day tomorrow. Note to those who worry about me losing sleep...I will never make another physical therapy appointment that early in the morning, for Tegan's sake and mine.