just a little update on baby of mine. 3 specialists later we still don't have much of an answer as to what is exactly wrong with greta. it's a little frustrating but patience and faith i guess will have have to become my friends.
the MRI came back some what normal. there were 2 area's of concern one w/ her corpus callosum being thinner than normal and two that the area's in her brain that have fluid are bigger than normal. they are both within the realm of normalcy but still of notice. dr. filloux wants to see her back in 2 months if she is still having her head tremors for further diagnosis and back again in another year for a MRI to check her brain again. dr. filloux also thought that maybe at some point we should see a geneticist to make sure it was not a chromosomal problem. he then referred me to see another pediatric ophthalmologist, dr. dries and also to a government funded program called "early intervention" for children under 3 with disabilities.
dr. dries gave me the best news of all, which is that greta can see. i have thought since the beginning that maybe she was blind. he did a number of tests on her and said that he agreed that her vision was very poor for her age but that she was not blind. that was a huge sigh of relief for me. however, greta is not doing the things that she should with her eyes at this point (tracking & focusing) and her vision is quite weak. he seemed to believe that it was probably due to lack of development in her brain in the vision department. he didn't know why this was and how it happened but acknowledged that this was not normal. dr. dries wants to see her back in 2 months for further testing and suggested "early intervention" as well. he did however LOVE her name, kudos to me.
now we are on to the early intervention stage. who knew such a thing existed? well, i couldn't be happier that it does. my RN that is on grets' case is names suzanne and i love love love her. she came over last week and observed greta for an hour and half and came to a few conclusions. she concluded that yes, greta was a prime candidate for early intervention because of her vision and that although greta is on target for most milestones, her vision is terrible and because of that she has little or no neck strength. most babies lift their heads because the have a reward by seeing something, but because greta doesn't see well she doesn't know to lift her head so we have to teach her. suzanne taught me a few "exercises" (not the jane fonda type, unfortunately) that i could do to help greta with her neck strength. so far, they seem to be helping. she also told me to buy greta visually stimulating toys. greta responds to noise quite well and has made the connection that sight and sound go together. she looks to see what she is hearing, even if she is not seeing it, and that is a good sign. suzanne is scheduled to come again next week and this time she is bringing a visual therapist.
i am not sure how i feel about the whole situation. even though there are no for sure answers i am glad we are moving in the right direction. how awesome is it that we live in a time where we can have the answers? greta is still a bobble head sometimes and we still don't know why. like i said, patience and faith right? plus, i don't know what it's like to have a child that doesn't have special needs so i guess this is normal for me. bring it on. one thing that i do know for sure is that I LOVE MY DAUGHTER. she is wonderful and i know that she will be okay because of how much we love her.
....even if she does have to wear these at one point.
the MRI came back some what normal. there were 2 area's of concern one w/ her corpus callosum being thinner than normal and two that the area's in her brain that have fluid are bigger than normal. they are both within the realm of normalcy but still of notice. dr. filloux wants to see her back in 2 months if she is still having her head tremors for further diagnosis and back again in another year for a MRI to check her brain again. dr. filloux also thought that maybe at some point we should see a geneticist to make sure it was not a chromosomal problem. he then referred me to see another pediatric ophthalmologist, dr. dries and also to a government funded program called "early intervention" for children under 3 with disabilities.
dr. dries gave me the best news of all, which is that greta can see. i have thought since the beginning that maybe she was blind. he did a number of tests on her and said that he agreed that her vision was very poor for her age but that she was not blind. that was a huge sigh of relief for me. however, greta is not doing the things that she should with her eyes at this point (tracking & focusing) and her vision is quite weak. he seemed to believe that it was probably due to lack of development in her brain in the vision department. he didn't know why this was and how it happened but acknowledged that this was not normal. dr. dries wants to see her back in 2 months for further testing and suggested "early intervention" as well. he did however LOVE her name, kudos to me.
now we are on to the early intervention stage. who knew such a thing existed? well, i couldn't be happier that it does. my RN that is on grets' case is names suzanne and i love love love her. she came over last week and observed greta for an hour and half and came to a few conclusions. she concluded that yes, greta was a prime candidate for early intervention because of her vision and that although greta is on target for most milestones, her vision is terrible and because of that she has little or no neck strength. most babies lift their heads because the have a reward by seeing something, but because greta doesn't see well she doesn't know to lift her head so we have to teach her. suzanne taught me a few "exercises" (not the jane fonda type, unfortunately) that i could do to help greta with her neck strength. so far, they seem to be helping. she also told me to buy greta visually stimulating toys. greta responds to noise quite well and has made the connection that sight and sound go together. she looks to see what she is hearing, even if she is not seeing it, and that is a good sign. suzanne is scheduled to come again next week and this time she is bringing a visual therapist.
i am not sure how i feel about the whole situation. even though there are no for sure answers i am glad we are moving in the right direction. how awesome is it that we live in a time where we can have the answers? greta is still a bobble head sometimes and we still don't know why. like i said, patience and faith right? plus, i don't know what it's like to have a child that doesn't have special needs so i guess this is normal for me. bring it on. one thing that i do know for sure is that I LOVE MY DAUGHTER. she is wonderful and i know that she will be okay because of how much we love her.
....even if she does have to wear these at one point.
9 comments:
Poor little one. Hopefully it's just something that passes. At least Trevan is nice enough to let you post a picture of his glasses at the end of the post
Kennan -
Hope you don't mind me posting (again) and I really hope you don't think I'm stalking you :) but I always seem to check your blog after you update about your sweet Greta.
Isn't it amazing the information and specialists out there? Even if you don't always get answers I think it helps knowing there are so many people out there just looking out for the best interest in our little ones.
Lucy has been a part of Early Intervention since she was 6 months old (3 months adjusted). I think it is a wonderful program and our experience has been quite positive. If you ever have any questions or would like to chat I'd love to help.
Take care, Codi
She is lucky to have come to such a wonderful family, who will do everything possible to make her life amazing!! There are so many new technologies out there, and support for parents, you will be well taken care of!
I've always thought glasses were cute on babies/little kids..I'm sure you can find some DARLING ones for Greta!! :)
You never cease to amaze me! Instead of giving up and crying, you dig deep to find answers for you babies! I LOVE THAT! What a sweet family you have!
There is a little boy in my sunbeam class with glasses and he is just the cutest ever! She will do great! I'm so glad you told me about early intervention. I can't wait for them to come out and see Jack!
you missy are an amazing person and mama of course. You impress me so much. I love Greta and just think how cute she would be in those glasses.
There you go again...my dynamite daughter! You ROCK as a mommy and Gretsie is SO lucky to have you as her own. P.S. I love her to pieces! XOXOXO
I have heard about early intervention - being in the whole education world - and it is awesome! I am so glad that your doctors referred you to it. I am so happy to hear that Greta is seeing. She is just the cutest thing out there - earrings and all!! You are doing such an awesome job with her!!
Kennan! Girl you rock as a mama. I have my little Dylan in early intervantion for his feeding problems and development for preemies. They are awesome. I'm loving the earings. She is adorable.
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