We took Nellie to Children's Hospital on Thursday to get her MRI. The staff there is wonderful and I can't say enough about the great treatment she recieved. After five hours she came out a bit stoned still from the sadation, but I'm not sure she even knew what happened. She wanted to stop and play in the waiting room.
She was still so out of it that it took over an hour after sadation for her to say anything. My sister handed her half and ice cream and she licked the wrapper clean held it up and said all done. Poor baby was starved for 12 hours before the MRI. 12 Hours may not seem like much but to Nellie it was weeks I'm sure.
We'll know the results on Tuesday and it seems like that day will never come. I'll post more when I know more.
Sunday, August 23, 2009
Thursday, August 13, 2009
More to think about
Janelle's speech teacher took a look at her hearing test results and informed me she feels her hearing is worse than low normal. So now I worry about her hearing on top of her vision. I wonder sometimes what her life is going to be like. Is she going to see the subtle beauty in the petal of a flower, or her the sound of a bird singing in the distance?
I pray her senses last long enough or don't get any worse so she will at least have the memories of the world I have exposed her to. I watched her as she slept last night. To look at her a person would never know there is something wrong. She's such a sweet, loving girl. It seems unfair that life has dealt her this hand, yet I know like everyone else she has a purpose in life and only time will tell what that is.
I pray her senses last long enough or don't get any worse so she will at least have the memories of the world I have exposed her to. I watched her as she slept last night. To look at her a person would never know there is something wrong. She's such a sweet, loving girl. It seems unfair that life has dealt her this hand, yet I know like everyone else she has a purpose in life and only time will tell what that is.
Tuesday, August 11, 2009
The dreaded appointment
Today was Nellie's appointment with the neurologist. He seemed like a great doctor. Very down to business, but checked everything and asked a lot of questions. He measured her spots and only four were the right size. However since they have been appearing so rapidly he is listing her as probable NF1 until after her MRI next week or in six months when the spots grow and or multiply.
Half of me is sad he couldn't tell me difinitivly today, but I understand. I've waited three years for answers......that's why I want them NOW!!!!! Can you tell I have no patience?
Half of me is sad he couldn't tell me difinitivly today, but I understand. I've waited three years for answers......that's why I want them NOW!!!!! Can you tell I have no patience?
Monday, August 10, 2009
Tomorrow is the big day
We go to the neurologist. I have waited it seems forever to get Nellie looked at by a Neurologist and now half of me wants to skip out on the appointment. It's like maybe if I don't hear anything it won't be true. I know there is a chance he will make us wait for a diagnoses, but the MRI scares me more than anything. In a way I want them to do it tomorrow to ease my mind and in another way I'm scared of that too.
Janelle had another bad night last night. She is waking up more frequently crying and I don't know why. It's been a while since I have slept through the night as she wakes me up with the slightest noise she makes. Add to that me being nine months pregnant and I am a walking zombie.
Janelle's TVI (teacher of the visually impared) told me her teacher is going to be a woman brand new to the school. I am excited about this a fresh, young teacher who is still very much in love with her job. I hope everyone is right and school is going to help dramatically.
Oh and a funny side note. The other night our giant white cat was laying on Nellie's legs when she was sleeping and Nellie woke up and said "Get off of me pee pee kitty". She calls all our cats Pee Pee cause we have one named Fee fee. Anyway I thought it was a cute story since this was one of her first full sentences.
Janelle had another bad night last night. She is waking up more frequently crying and I don't know why. It's been a while since I have slept through the night as she wakes me up with the slightest noise she makes. Add to that me being nine months pregnant and I am a walking zombie.
Janelle's TVI (teacher of the visually impared) told me her teacher is going to be a woman brand new to the school. I am excited about this a fresh, young teacher who is still very much in love with her job. I hope everyone is right and school is going to help dramatically.
Oh and a funny side note. The other night our giant white cat was laying on Nellie's legs when she was sleeping and Nellie woke up and said "Get off of me pee pee kitty". She calls all our cats Pee Pee cause we have one named Fee fee. Anyway I thought it was a cute story since this was one of her first full sentences.
Sunday, August 9, 2009
It all started so long ago
I think I knew from they day Nellie was born she was different. Janelle came into the world at a tiny weight of 15 lb.'s 15 oz.'s, much smaller than my other four children. She had a single vessel umbilical artery which went unnoticed until she was born, but otherwise seemed healthy at the time. I remember looking at her in the hospital and just feeling something was off.
Nellie was a good baby. She never cried, NEVER!!! We would feed her every four hours and check her diaper all the time because otherwise we wouldn't have known when she needed something. Everyone said she's such a good baby.
At three months Janelle decided to give me the scare of my life. She gasped and throw up her arms and legs. I practically threw her at my husband telling him to fix her. My mother quickly rushed over and held Janelle who after ten minutes was still groggy and drooling. We took her to the ER and had to follow up with the doc. We were later told this was acid reflux, something I never agreed with. The gasping spells happened a few more times while she was an infant. It was to the point that she did it to our sitter who then refused to watch her.
At five months Janelle was diagnosed with nystagmus (shaking eyes). I remember crying when the eye doctor said she may be legally blind, thankfully she isn't. She is listed as visually impared though.
It was after reading up on nystagmus I found out we needed to call in Early intervention. At this point Nellie was about 8 months old. I knew she wasn't hitting her milestones like other kids, but already having four children besides her I knew all babies were different.
After weeks of evaluations it turned out she was further behind than I could have ever imagined. At ten months she began to receive speech, occupational therapy, and a vision teacher. She was also diagnosed with a feeding delay.
Fast forward now two years. Janelle is still receiving a lot of services and was just switched over to our school districts special education. She was scored at having an IQ of 70, and is falling so far behind on everything she must now start a special education pre-school at two.
I was so upset with everything I finally knelt down and prayed. I asked God to give me some answers on my sweet little girl and he just may have. In the past month and a half Janelle has been getting cafe-au-latte spots all over her. This may be the clue to everything. She goes to a neurologist on August 11th to be tested for neurofibromatosis. Though it's terrible to think your child has something wrong, I've always known. It's time now I know what it is and what our next steps should be.
Keep Nellie in your thoughts as she goes to be checked. Please think of our family and that we may finally know what is causing her issues. I'll keep this blog updated as Nellie's journey continues.
Nellie was a good baby. She never cried, NEVER!!! We would feed her every four hours and check her diaper all the time because otherwise we wouldn't have known when she needed something. Everyone said she's such a good baby.
At three months Janelle decided to give me the scare of my life. She gasped and throw up her arms and legs. I practically threw her at my husband telling him to fix her. My mother quickly rushed over and held Janelle who after ten minutes was still groggy and drooling. We took her to the ER and had to follow up with the doc. We were later told this was acid reflux, something I never agreed with. The gasping spells happened a few more times while she was an infant. It was to the point that she did it to our sitter who then refused to watch her.
At five months Janelle was diagnosed with nystagmus (shaking eyes). I remember crying when the eye doctor said she may be legally blind, thankfully she isn't. She is listed as visually impared though.
It was after reading up on nystagmus I found out we needed to call in Early intervention. At this point Nellie was about 8 months old. I knew she wasn't hitting her milestones like other kids, but already having four children besides her I knew all babies were different.
After weeks of evaluations it turned out she was further behind than I could have ever imagined. At ten months she began to receive speech, occupational therapy, and a vision teacher. She was also diagnosed with a feeding delay.
Fast forward now two years. Janelle is still receiving a lot of services and was just switched over to our school districts special education. She was scored at having an IQ of 70, and is falling so far behind on everything she must now start a special education pre-school at two.
I was so upset with everything I finally knelt down and prayed. I asked God to give me some answers on my sweet little girl and he just may have. In the past month and a half Janelle has been getting cafe-au-latte spots all over her. This may be the clue to everything. She goes to a neurologist on August 11th to be tested for neurofibromatosis. Though it's terrible to think your child has something wrong, I've always known. It's time now I know what it is and what our next steps should be.
Keep Nellie in your thoughts as she goes to be checked. Please think of our family and that we may finally know what is causing her issues. I'll keep this blog updated as Nellie's journey continues.
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