Nora had a good week. She has been really happy and smiley lately. She is doing lots of "babbling" with her ga's. This is a good step in maybe hopefully someday saying words. She has been doing great at school and is starting to drink out of "regular" cups. She has a special cup that has a normal lip but the fluid comes out very slowly. She is starting to really move. Not quite running but speed walking for sure.
We went to Nora's school for an ice cream social last week and Alex and Emma got to see her school. One of Emma's friends from school had a Halloween party on Sun. that we went to. Emma is a witch and Nora is a monkey this year.
I took Nora to a developmental behavioral pediatrician yesterday. I was hoping to get some advice on whether or not to have her evaluated for autism. What I got out of the meeting was we can probably wait a few months and give her time to progress. She has changed so much in the last 6 months that who knows how she'll be at 2 1/2. We also might wait until after her next MRI which will be around her 2nd bday in Feb. SO, I guess we wait a bit.
Another positive from the meeting was that he was very thorough in his background questions and we discussed all her medical details and he took a lot of time to spend looking at her physically. And he confirmed that I have been doing all the right things so far in taking steps to get her the best therapies etc. Which is nice b/c it seems like we are on this crazy train by ourselves and no one out there is telling us which way to go.
Other than that, we have just been having fun with Emma and our friends today at Lauren's bday party. Emma has a field trip with her class to the pumpkin farm tomorrow. That should be fun.
Thanks for checking in!
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.
Thursday, October 25, 2007
Wednesday, October 17, 2007
GaGa
Nora has a new "word" as of 3 days ago. Gaga! We haven't heard any consonant sounds until this. She is very vocal-we like to call her screamy mimi- but only yelling or vowel sounds. It is very encouraging that she is starting new sounds.
We saw an ABA (applied behavior analysis) therapist today to see if it might help Nora's development. I really liked the therapist but Nora is booked to the max right now with her school schedule, I don't know how we would fit in another thing. It may be something we will do in the future. We also have her meeting to update her goals at school tomorrow so we'll have a better idea of where she is developmentally. She is definitely making good progress.
We also had her poop analysed for lactose intolerance, which was negative. Hopefully we'll figure out what her poo problem is soon. If not, we'll have to go see a GI specialist. Grrr... another doctor to deal with.
We all enjoyed our visit from Mim. It went by way too fast. But we will be in NY for xmas!
Thanks for checking in.
Lori
We saw an ABA (applied behavior analysis) therapist today to see if it might help Nora's development. I really liked the therapist but Nora is booked to the max right now with her school schedule, I don't know how we would fit in another thing. It may be something we will do in the future. We also have her meeting to update her goals at school tomorrow so we'll have a better idea of where she is developmentally. She is definitely making good progress.
We also had her poop analysed for lactose intolerance, which was negative. Hopefully we'll figure out what her poo problem is soon. If not, we'll have to go see a GI specialist. Grrr... another doctor to deal with.
We all enjoyed our visit from Mim. It went by way too fast. But we will be in NY for xmas!
Thanks for checking in.
Lori
Friday, October 12, 2007
Visit from Mim
It's been a while since I have posted. Nothing too exciting to tell. Mim is here for a visit. A whole weeks worth of mim-fun.
Nora is doing well. She took her last dose of Lamictal today to see if we can get her bm's to be regular and not diarrhea. Hopefully it will do the trick and we'll be back on track.
We have a meeting next week with an ABA (applied behavior analysis) specialist to see if she could work with Nora. I don't know if it will help, but it can't hurt. We'll also meet with her teachers on Thurs. to go over her goals for this year. Since the seizures were stopped, she has advanced quickly in so many areas that she is way past her goals from last year. She still needs the most work in communication skills. Still no pointing, signs, or words.
Some good news re: me- my colon is in good shape. I had a colonoscopy today for preventative measures (Bev was here so I thought it would be a good time). Healthy colons all around. Yahoo.
Hope all is well with everyone else. Thanks for checking in.
Lori
Nora is doing well. She took her last dose of Lamictal today to see if we can get her bm's to be regular and not diarrhea. Hopefully it will do the trick and we'll be back on track.
We have a meeting next week with an ABA (applied behavior analysis) specialist to see if she could work with Nora. I don't know if it will help, but it can't hurt. We'll also meet with her teachers on Thurs. to go over her goals for this year. Since the seizures were stopped, she has advanced quickly in so many areas that she is way past her goals from last year. She still needs the most work in communication skills. Still no pointing, signs, or words.
Some good news re: me- my colon is in good shape. I had a colonoscopy today for preventative measures (Bev was here so I thought it would be a good time). Healthy colons all around. Yahoo.
Hope all is well with everyone else. Thanks for checking in.
Lori
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