Whew! We were very busy the past week. We left for NY last wed. morning. Right before we got into the car, Nora projectile vomited accross the kitchen floor. Nice. The flight was uneventful. No naps for Emma and Nora only fell asleep on me for the last hour.
The week flew by. We had tons of fun. The girls went sledding in all the snow, we played with our cousins Katie, Brynna and Michael. Emma loves loves loves her cousins and Nora loved the attention. Uncle Mark and Aunt Maura were also a big hit.
We also saw lots of friends. Alex got to go snowboarding with Lucious and Patrick one day. I got to see my friends Jen and Michelle and their kids. I met Isabelle who is just so sweet. Emma and Nora played with Tyler, Owen, Colin and Raine. We also went out for a lovely dinner with Loucious and Sam. And the girls played with Aidan and Marcus. Very busy busy busy.
Mim and Grandfather had lots of fun with the girls as well. We made lots of food and baked lots of goodies. Christmas morning was fun. Santa came and left footprints all over, ate his cookies, and left a ton of presents for us all! Unfortunately, Katie and Brynna had the flu x-mas eve and Mim got it x-mas night. But they are all feeling better now.
Nora didn't really get what was going on. Not too interested in the unwrapping of presents. She liked her new toys, all noisy and musical! She got a big piano that you walk on to make sounds which she likes and lots of toys with buttons to push and make sounds. I don't know if other almost 2 year olds would have been that more into in. Probably, I can't remember what Emma was like. But she was happy, giggly, and smiley the whole time so that is good. Everyone who hasn't seen her commented on her improvements since the last time. More eye contact, more sounds, better attention and more interaction. SO that is huge. She is making progress and developing, but very slowly. I just hope she'll be able to communicate at some point soon. I would love for Emma to play with Nora the way she plays with the other kids. Nora doesn't respond so Emma has just learned not to bother that much.
Anyway, we have a whole other Christmas to celebrate today with Aunt Kim, Grandma and Grandpa, now that we are back in Seattle. Emma woke up at 5:00 am and Nora at 5:30. It is 6:45 am right now and I am ready for a nap. Good thing I went to bed at 9:00 last night.
Hope you all had a great holiday.
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, December 27, 2007
Tuesday, December 18, 2007
Sick, sicker and sickest
So we all have had the stomach flu in the last 72 hours. I had it, Nora had it and Alex has it. Emma is the only one who hasn't gotten it yet. Hopefully she won't. We fly to NY tomorrow and it won't be fun to have a 4 year old vomiting all over the place. Think healthy thoughts for us.
Nora had her autism evaluation yesterday. Poor girl wasn't feeling so hot but they had already cancelled 2 appts. on us, I wanted to get it done. She most likely won't be labeled "autistic" due to her "lovely eye contact". But she couldn't do any of the activities they wanted her to do (pretend play, ask for help, stack stuff) so hopefully we'll get some sort of suggestion that we haven't already tried. I am sure they'll say we need to have more speech therapy and OT. I just don't know how we'll fit it into our schedule. Nora is a busy busy toddler. Well, at least we are examining all the possibilities out there. We just won't know how she'll turn out until it happens. Very frustrating. I want to switch the fix button but unfortunately, I can't find it. We have to feel lucky for what she can do. And that she no longer is having seizures.
Have a lovely holiday. We are off to NY for the week.
Lori
Nora had her autism evaluation yesterday. Poor girl wasn't feeling so hot but they had already cancelled 2 appts. on us, I wanted to get it done. She most likely won't be labeled "autistic" due to her "lovely eye contact". But she couldn't do any of the activities they wanted her to do (pretend play, ask for help, stack stuff) so hopefully we'll get some sort of suggestion that we haven't already tried. I am sure they'll say we need to have more speech therapy and OT. I just don't know how we'll fit it into our schedule. Nora is a busy busy toddler. Well, at least we are examining all the possibilities out there. We just won't know how she'll turn out until it happens. Very frustrating. I want to switch the fix button but unfortunately, I can't find it. We have to feel lucky for what she can do. And that she no longer is having seizures.
Have a lovely holiday. We are off to NY for the week.
Lori
Friday, December 14, 2007
Still alive
Yes, I am still alive. Alex has been gone 10 days so far. I think my threshold is about 7 days. Day 8, I start to go a bit batty. Getting the girls' colds doesn't help either. Luckily, he gets home tomorrow night. Late but still I'll be able to maybe take a 10 minute shower instead of 3 on Sun.
Emma's school sent home a note yesterday afternoon saying Pertussis (whooping cough) is going around school. Of course I cancelled the girls' vaccinations YESTERDAY morning b/c they both have colds. And of course the shot Emma was supposed to get was the DTaP, which prevents whooping cough. So we went in today at 8 am, ug, for Emma to get a 12 inch rod shoved up her nose for the test. Poor girl was not happy. And this was all after waking up to a crib full of vomit. Nora had gotten sick during the night and rolled all over. Nice. Luckily, Grandma took Emma for the day so I could rest when Nora took a nap. :)
After dropping Emma off w/Grandma, Nora had a hearing test at 9:45. She did great and turned for most of the sounds. She was such a trooper. Unfortunately, she didn't pass b/c she wasn't responding to the low tones and really quiet sounds. We'll have to do a sedated hearing test when she is under anesthesia for her MRI in Feb. But when we got home, she took a nice 3 hour nap. Ahhhhhh...
Nora has her Autism eval on Monday so hopefully we'll get some feedback from that. And then Emma has her dance class holiday party on Tues. and we leave for Albany on Wed. Yikes. Hope the snow stops for us to fly.
See some of you soon. Happy Holidays!!!!
Lori
Emma's school sent home a note yesterday afternoon saying Pertussis (whooping cough) is going around school. Of course I cancelled the girls' vaccinations YESTERDAY morning b/c they both have colds. And of course the shot Emma was supposed to get was the DTaP, which prevents whooping cough. So we went in today at 8 am, ug, for Emma to get a 12 inch rod shoved up her nose for the test. Poor girl was not happy. And this was all after waking up to a crib full of vomit. Nora had gotten sick during the night and rolled all over. Nice. Luckily, Grandma took Emma for the day so I could rest when Nora took a nap. :)
After dropping Emma off w/Grandma, Nora had a hearing test at 9:45. She did great and turned for most of the sounds. She was such a trooper. Unfortunately, she didn't pass b/c she wasn't responding to the low tones and really quiet sounds. We'll have to do a sedated hearing test when she is under anesthesia for her MRI in Feb. But when we got home, she took a nice 3 hour nap. Ahhhhhh...
Nora has her Autism eval on Monday so hopefully we'll get some feedback from that. And then Emma has her dance class holiday party on Tues. and we leave for Albany on Wed. Yikes. Hope the snow stops for us to fly.
See some of you soon. Happy Holidays!!!!
Lori
Wednesday, December 5, 2007
12 days of Alex gone.....
Alex left today for Whistler. He'll be gone for 12 days. Uggggg..... I usually can handle 7 days no problem but after that I start to go a bit stir crazy. Nora and Emma are both a bit sick. They have runny noses and Emma has a cough. Nora has been waking up at 5 am every morning so I am looking forward to no sleep for 2 weeks.
Nora has her first evaluation on Friday at the Autism center. Hopefully we'll find out more info on her diagnosis.
I also am on the fence about giving the girls vaccines. Nora hasn't had one since she was 12 months and I've slowed down Emma's schedule. I know there is no "proof" that vaccines can cause various conditions (um, let's see, autism, seizure disorders....) and Nora has other neurological issues, but it just scares the crap out of me to put anything into her little wee body that may make her regress in anyway. She is NOT getting a pertussis vaccine ever again and maybe not the MMR. What's worse, whooping cough and measles or being unable to talk or walk for the rest of your life? I'll take whooping cough. I don't object to vaccines for most kids, but kids w/neuro issues and developmental issues, I think there needs to be more research of the side effects. It is such a hard decision and may affect the rest of their lives.
It's hard to be a grown up. That's what I told Emma today while fighting her to get dressed. I told her I needed her to help while Daddy's gone and she said "I'll take care of you and you can take care of me and Nora, Mommy." That's a deal for sure. Little pumpkin.
Have a good day.
Lori
Nora has her first evaluation on Friday at the Autism center. Hopefully we'll find out more info on her diagnosis.
I also am on the fence about giving the girls vaccines. Nora hasn't had one since she was 12 months and I've slowed down Emma's schedule. I know there is no "proof" that vaccines can cause various conditions (um, let's see, autism, seizure disorders....) and Nora has other neurological issues, but it just scares the crap out of me to put anything into her little wee body that may make her regress in anyway. She is NOT getting a pertussis vaccine ever again and maybe not the MMR. What's worse, whooping cough and measles or being unable to talk or walk for the rest of your life? I'll take whooping cough. I don't object to vaccines for most kids, but kids w/neuro issues and developmental issues, I think there needs to be more research of the side effects. It is such a hard decision and may affect the rest of their lives.
It's hard to be a grown up. That's what I told Emma today while fighting her to get dressed. I told her I needed her to help while Daddy's gone and she said "I'll take care of you and you can take care of me and Nora, Mommy." That's a deal for sure. Little pumpkin.
Have a good day.
Lori
Saturday, December 1, 2007
Snowy day
We had a fun day today. We went downtown to the "gingerbread lane" exhibit with our friends Gretchen, Jane and Franny. I'd have to say gingerbread lame! There were only 7 houses and none of them too cool. Bah humbug. Then we went to the carousel and had hot cocoa, which was fun. When we got home it started to snow!! Big fat flakes too. Alex is getting excited to go to Whistler next week for work. I, on the other hand, am not too excited for him to be gone for 12 days.
We went to the Autism Center yesterday for the parent interview. Nora will start the tests next week, 2 sessions 2 hours long. They seem very nice and we will hopefully have a diagnosis (or not) by the beginning of Jan.
Still have lots of xmas shopping to do. Bah humbug again. I hate shopping.
Anyway, have a merry weekend.
Lori
We went to the Autism Center yesterday for the parent interview. Nora will start the tests next week, 2 sessions 2 hours long. They seem very nice and we will hopefully have a diagnosis (or not) by the beginning of Jan.
Still have lots of xmas shopping to do. Bah humbug again. I hate shopping.
Anyway, have a merry weekend.
Lori
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