Crazy week.
Last Friday, we went to the neurologist for a check up. Nothing new to share. No one can really predict how Nora will develop. Just keep on doing what we are doing.... Nora is almost up to the full amount of Lamictal (70 mg/day) and we can start weaning her off the Zonegran next week! Hopefully that will help with cognitive development. Who knows though.
Emma started having a rash on her torso on Sat. and by Monday it was all over her body. We went to the doctor to have them tell us what it was. They didn't know. It wasn't strep, roseiola, scarlet fever, mumps, measles or chicken pox. Probably a viral infection. So she was itchy and rashy all week. It is finally drying out and feeling a bit better.
Tuesday, I had to have a crown put on a molar and get a filling to boot. It actually wasn't that horrible. Too many Pepsi's when I was little.
Wednesday I met with a perspective speech therapist for Nora (who doesn't do toddlers). So the search goes on.
Today, we go see the GI doctor to see if we can figure out why Nora has had diarrhea since Sept. Poor girl has a diaper rash almost always.
Thank god for insurance. We probably see at least 1 doctor a week and have for the last year. Maybe I should go to medical school....
Have a good weekend.
Lori
This is Nora's story... Nora was diagnosed with Infantile Spasms April 24, 2007. Infantile spasms is a rare seizure disorder. Nora was put on an anti seizure medication April 26th called ACTH. Her seizures were gone after 1 week of treatment and haven't been back. Nora also has partial agenesis of the corpus callosum and arachnoid cysts in her brain. For more info, check out the history section below.
Friday, January 18, 2008
Thursday, January 10, 2008
Terrible 2
Nora is getting over an ear infection. She's been snotty and miserable for the last week or so. Last week she had a fever and we finally took her in Sat. evening to the after hours clinic. She had an ear infection of course. SO getting her to take her medicine has become a challenge. She is spitting EVERYTHING out. She won't eat anything and hiding her medications is a nightmare. I had to take her back in on Tues. to see if it was better and she threw the biggest fit ever. I thought she was going to break my nose she was bucking and fighting so hard. I don't know if it is part of the "terrible twos" or just a new behavior she has decided to pick up. Or it may even be a side effect of the anti seizure med we are trying to put her on. Maybe it is making her aggressive. Who knows. We see her neurologist tomorrow so maybe we'll get some answers.
She is having issues at school too because her schedule changed on M/W 12:30-2:30 which is NOT a good time for her. (she should be napping) She gets really mad if they make her do stuff she doesn't want to do and on top of that, she has a new teacher this quarter who doesn't know her yet. So all around a pleasant experience for all of us.
Emma started FULL Day preschool this week. She seems to like it and has transitioned just fine. I think it will be good for her to have more social time with her friends and maybe start doing more activities besides art at "work time". It gives me more time between shuttling everyone around town which is nice too.
Emma is also starting ski lessons tomorrow. Alex will take her Sat. afternoons. It will be a good father/daughter bonding time. He's going to miss the Seahawks/Packer game. We'll have to DVR it for him.
Hope all is well
Lori
She is having issues at school too because her schedule changed on M/W 12:30-2:30 which is NOT a good time for her. (she should be napping) She gets really mad if they make her do stuff she doesn't want to do and on top of that, she has a new teacher this quarter who doesn't know her yet. So all around a pleasant experience for all of us.
Emma started FULL Day preschool this week. She seems to like it and has transitioned just fine. I think it will be good for her to have more social time with her friends and maybe start doing more activities besides art at "work time". It gives me more time between shuttling everyone around town which is nice too.
Emma is also starting ski lessons tomorrow. Alex will take her Sat. afternoons. It will be a good father/daughter bonding time. He's going to miss the Seahawks/Packer game. We'll have to DVR it for him.
Hope all is well
Lori
Thursday, January 3, 2008
Happy New Year
Happy New Year. It has been about 1 year since we started worrying that something was wrong with Nora. She was having seizures (looking back at it, we now know that was what her "head bob" was), she didn't respond to her name, didn't make eye contact, wasn't crawling or walking, didn't have any sounds and didn't play with any toys appropriately. I thought she had autism for sure.
Today we found out she does NOT have autism. We had her evaluated at the UW Autism Center and had our results meeting today. She has very good social skills for her "developmental age" and is starting to have some communication skills. She is very developmentally delayed still, about 9-12 months behind in most areas. That means she is just starting to do the things she was supposed to do a year ago. She is basically a 1 year old in a very big 2 year old's body. She does not have the repetitive behaviors of an autistic child and is more social than an autistic child.
We do need to work on her speech and language more than we are. We knew that already but this will give me the push I need to find time for another weekly therapy appt. She gets some time at school but not enough for her delays.
Overall, it was a good outcome. We'll have to have a recheck in a year if we still think she may be autistic. But I hope she'll make huge leaps and bounds by then and I am sure she'll be a whole new girl by then. With the progress she has made in the last year, I hope she can do some catching up. She is such a happy little person and we are very lucky that she is doing so well.
I wish everyone a happy and healthy 2008.
Lori
Today we found out she does NOT have autism. We had her evaluated at the UW Autism Center and had our results meeting today. She has very good social skills for her "developmental age" and is starting to have some communication skills. She is very developmentally delayed still, about 9-12 months behind in most areas. That means she is just starting to do the things she was supposed to do a year ago. She is basically a 1 year old in a very big 2 year old's body. She does not have the repetitive behaviors of an autistic child and is more social than an autistic child.
We do need to work on her speech and language more than we are. We knew that already but this will give me the push I need to find time for another weekly therapy appt. She gets some time at school but not enough for her delays.
Overall, it was a good outcome. We'll have to have a recheck in a year if we still think she may be autistic. But I hope she'll make huge leaps and bounds by then and I am sure she'll be a whole new girl by then. With the progress she has made in the last year, I hope she can do some catching up. She is such a happy little person and we are very lucky that she is doing so well.
I wish everyone a happy and healthy 2008.
Lori
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