Home sweet home

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

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

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

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

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

Thankful

I am thankful for two beautiful children. I am thankful for my wonderful family. I am thankful for my family's health. I am thankful for Nora's gagas and buhbuhs. I am thankful for Nora's big smile everyday. I am thankful that she can walk and feed herself. I am thankful that Emma loves her sister unconditionally. I am thankful that I have a loving husband who is also a loving father. I am thankful for the clapping Nora has learned. I am thankful for that Emma knows how to count to 30 and loves to dance. I am thankful that Ollie lets the girls crawl all over him. I am thankful for all the support from my family and friends. I am thankful that I can stay home with my children. I am thankful that Nora and Emma are happy little people. I am thankful that I can sleep until 6:30 am (somedays). I am thankful that even though I am not always thankful that we have to live with Nora's disabilities, that I can still be thankful for all we do have.

Happy Thanksgiving
Lori

fun weekend

Nora has been having such a good week. She is doing very well in school, happy and progressing nicely. She's been clap happy and saying "B" sounds and "Ga" sounds a lot. She'll also make an "M" sound sometimes too. Now we just need her to start pointing or using signs so we can get some communication happening.

We went to the GI doctor the other day and learned that there is nothing wrong with her system -most likely- and have to wait it out. Although they didn't really do anything while we were there, just looked at the tests we had already had done. Grr... so frustrating. There are still some blood test to do to see if it's an allergy or something but that's probably not the issue. SO we just have to deal with mushy diapers.

We are going to start her on Lamictal again tomorrow so hopefully she won't get diarrhea again. If she does then we will probably have to try a different anti seizure med. The Zonegran has been keeping seizures away but it delays her cognitive development & we want her off asap. So it takes about 8 weeks to get her to a high enough dose of the Lamictal. Then we can wean from the Zonegran.

Emma is going on a field trip to the fire dept. near her school tomorrow. We went to the Children's museum today and the girls had a lot of fun.

Hope you all have a great Thanksgiving!
Lori

The clapper

Nora learned how to clap yesterday!!!!! It sounds like a small thing but it is a HUGE accomplishment for her. AND she copies us if we clap. That is enormous!!!!!!!! We are all so excited and jumping and cheering for her!!!! It gives us hope that she'll learn more involved communication. We are working on some signs so she can let us know what she wants. Milk, all done, and more. And we need to get her little chubby finger to learn how to point. Then at least she can point to what she wants. She is doing great in school and learning new skill all the time.

We are having her evaluated at the UW Autism Center in December so we'll hopefully get more information on how to teach her new skills. If she is diagnosed w/autism, she'll also qualify through the school district for more service than if she is just "developmentally delayed".

Alex and I went to an auction last night for Outdoors For All http://outdoorsforall.org/ which is an organization that helps "disabled" kids and adults get out and experience the snow, biking, water, etc. K2 was a big sponsor and helped raise over $500,000! It was very heartwarming to see so many donors. I hope we can get K2 to donate some snowboards/skis to Nora's school's auction in the spring. It was fun to do something a little different.

Thanks for checking in
Lori

Halloween

Nora was a cute little monkey for Halloween, monkey sounds included. Emma was the wicked witch of the west, green face included.

Nora has been doing well at school. Still no communication at all. That is her biggest deficit. We'll take a point or a sign-anything.

We need to decide whether or not to get her evaluated sooner than later for autism. If she is diagnosed, she'll hopefully get more services through the school district when she turns 3. Considering she's not even 2 yet, I don't know if we should wait awhile. I feel like we are at a doctor's appointment every week so I try to space them out if I can. There was a big media surge on autism lately. The today show had a segment on how kids should be tested for autism before they're 2. We meet with her pediatrician tomorrow to go over a list of concerns. Hopefully we'll get some answers finally. Or at least some good advice.

Thanks for checking in .

Lori

Good week

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

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

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

Home Alone

Nora and Emma are doing fine with Dad this weekend. First time Alex has the girls solo. I am in NY for Bev's 60th birthday party. Boy was she surprised at the surprise. Happy Birthday!

Nora has been doing very well at school. She is working hard and learning new skills. Hopefully we'll see some pointing and signs in the near future. Her rash is all gone and we are going to try her on the Lamictal again next week. She will hopefully do fine on it so we can get her off of the Zonegran. The Lamictal is better for her cognitive development. The Zonegran somehow delays that. We'll see what happens. Hopefully she can be off all her meds at some point.

Thanks for checking in.

Lori

Lamictal not working

Nora still has chronic diarrhea which gives her a terrible diaper rash. We tested her poop to see if she has some kind of virus but nothing showed up. The only other thing could be her meds. SO we are going to now wean her off of the Lamictal over the next 3 weeks to see if her poo issues get better. If that isn't it, then I guess we start seeing if she is allergic to dairy or some other foods. Grrr..... I am getting frustrated at having to change icky diapers every 20 minutes but poor Nora must feel awful too. I hate having to put her through all this.

Nora had a good first week at school. It was full of long days and some weird nap schedules but she did it. Hopefully it will get easier. Emma had a bit of a rough week too. Alex went to China on Tuesday so she is a bit sad for her daddy. We had a fun dinner date with our friends last night so that was a good thing for all of us! Thanks for the yummy dinner Gretch!

Thanks for checking in!

Lori

Back to school

Nora went back to school today. She gets one on one services M/W from 11:30-1:20. It seems to conflict w/her nap and lunch schedule but hopefully it will work out eventually. She will also go T/Th from 9-10:30 for playgroup. She will receive OT/PT and speech within that time. The teachers who worked with her last year but did not see her over the summer saw tons of improvement in eye contact and motor skills. That was good to hear.

Since I'll have some free time while she's in class, I plan on getting some walks in while she is there to get some exercise. (hopefully)

Emma is adjusting to her new preschool. It's hard to get any information out of her but she seems to like it ok.

Nora's diarrhea/diaper rash is still pretty bad so we went back to the doctors and got some stool sample vials. yummmm... If it turns out that the Lamictal is causing this problem, we'll have to wean her off of it over the next few weeks to see if her poop gets better. Hopefully that is not the case b/c we want her off the Zonegran and on the Lamictal. The nurses at the dr. office also commented on how great Nora looks (not a huge blubber baby anymore) and how well she is walking etc. Also nice to hear.

Alex leaves for a trip to China tomorrow and will be gone for a week. Hopefully, we'll all stick to our schedule and take long naps. And no more trips to the doctor!

Thanks for checking in!

Lori

All pooped out

Poor Nora. She has had a bad case of the poops and now has a nasty diaper rash. We went to the doctor last night to get some "miracle cream" but it won't be ready until tomorrow. Poor girl can't even sit it hurts so much. She's got a very sensitive bottom. I was mainly concerned because her new medication, Lamictal, may cause a serious rash. But this is only in the diaper area and not spreading anywhere else. Phew. We are still increasing her dose every other week so hopefully this rash will go away once her tummy is back to normal.

We also went to a vision therapist today to make sure she is tracking with her eyes and to see if she needed therapy. She is making better eye contact now which is great. Her right eye is weaker than the left which makes sense. She favors her left side for everything-she is left handed and always steps w/her left foot first. This is because her biggest cyst is in the left side of her brain which affects her right side. Very interesting stuff.

Emma started Montessori School yesterday. She will be in school M-F 9:00-1200. We think she liked it. She wouldn't really tell us much of what she did. This is so opposite from the last 2 years. I worked in her class once a week at the co-op so I knew all the kids, parents and teachers. Now I am just a mom. And I don't even walk her into school, we drop them off and pick them up at the playground and the staff take them in and out of the car for you. Drive-thru school!!!!

Nora starts Sept. 17th. She goes M-Th for 2 hours a day. I will be a very busy chauffeur for the next 9 months. Hopefully that will be all we need to do for Nora, no extra therapies or anything. She really is developing and making wonderful progress. I know she is still pretty far behind in speech development but hopefully that will also come as easily as the physical side.

Thanks for checking in!

Lori

Summer's almost over!

We went to the wading pool today. It may be one of the last days of summer for us. Emma starts school on Wednesday! 9-noon, 5 days a week! Big girl. They teach French and sign language! It's our first experience with Montessori. Should be great.

Nora starts school 9/17. It is going to be a busy year I think. Hopefully Nora will continue to make progress and start catching up to her age level. Still no signs of talking but she is interacting so much more that I hope with all her therapies, we'll at least get some sort of communication soon (sign language maybe).

All is well with Nora's medication. We are slowly increasing her new med (Lamictal) and will be lowering the old one(Zonegran) in Oct.

Luckily, Nora is done with ACTH. Apparently, the drug co. that makes the steroid that got rid of Nora's Infantile Spasms is now increasing the cost from about $900.00 per vial, to $10,000 per vial. It seems a bit crazy I know. Nora's whole prescription cost about $10,000. IF she would need to have it again, it would possibly be $100,000. NUTS! Read the following article and see for yourself....

http://biz.yahoo.com/bw/070827/20070827005278.html?.v=1


I don't know how kids with IS are going to get the treatment that may rid them of the seizures.

Well, thanks for checking in!

Lori

Back from Vacation

We had a fun time at Mim and Grandfather's in NY. We saw lots of friends and family. Emma and Nora loved seeing their cousins Michael, Brynna and Katie. And of course Uncle Mark and Aunt Maura. Mim threw a big party for us and we visited with everyone. We also went to Uncle Mark's camp and swam and went on the boat. Emma and Nora did very well on the plane and I kept my sanity. I won't be doing it solo again for a while though.

The girls had their check ups today and Emma is 29.5 lbs, 37 inches and Nora is 28 lbs. and 33 inches. Little sister my foot. Everyone is healthy. Nora is doing great on her new meds. She starts school 9/17 and Emma starts her new Montessori school 9/5.

Enjoy the rest of the summer.

Lori

No news is good news

We have not had any new news lately. Emma's birthday party was Thursday which was fun. It was princess-ariffic. We leave on Tuesday (her real birthday) to fly to Albany NY (we being me and the girls). Alex is going to Mexico for work so I will be flying solo.

Nora had a bit of a temp tonight-101.5 so hopefully it will pass by the time we leave. She is doing well on her new medication. We haven't really seen too much of a change yet. She's still on the old one for now. She seems to be handling it ok. She's showing a lot more emotions and smiling all the time. She is progressing in so many areas all at once it's hard to mention them all. Her walking is better and she is getting fast. She went right out the door and fell down the porch steps the other day before I even knew what happened. She was fine thank goodness. We have about 5 safety gates now.

We'll be in NY for a week so I will give an update after we get back . We have so many people to see and places to go, I don't think I'll have time to update the blog. Or maybe I will since I won't have to take care of my kids at all. Mim and Grandfather will be on call.

Hope all is well.

Thanks for checking in. Please leave a comment so I know you were here!

Lori

Neurology Appointment

We met with Nora's neurologist today. For such a long wait to get in to see him, we really didn't seem to get any new info. We do like him and it will be good to have a permanent doctor that we see all the time. (or at least twice a year)

We did decide to put her on a new anti seizure medication, Lamictal. That is the one w/ the crazy rash side effect. We are starting very slowly with very low doses. It will take 3 months to get her to the level that she needs to be for treatment. We will also wean her off the med she is on now (which makes her cognitive development slow down). Hopefully, the Lamictal will be better for her and have no side effects. We shall see. We did ask why she needs to be on anything at all since she hasn't had any more seizures and the reason is that her EEG is still showing signs of abnormal activity... which may lead to seizures. This med is supposed to stop that from happening.

Nora will most likely need another MRI when she is 2 so we can check on her arachnoid cysts, corpus callosum, and the heterotopia. Just to make sure things aren't growing bigger etc. We'll have her hearing tested then too while she is under sedation.

Things have been a bit boring here. Just bringing Nora to school, speech therapy, physical therapy, Emma to swim class and doing summer things.

Hope all is well. Thanks for checking in!

Lori

Good night sleep

It's amazing how a good night's sleep makes everything better. Nora slept 12 1/2 hours last night w/ only a few minutes of waking up. She is very stuffy and her nose got gooped up so I cleaned her up and she slept until 9:30 am!!!!!!! We are all in a much better mood today.

Even with a cold, she has been very smiley and happy. Making great eye contact and playing with new toys every day. She still loves loves loves the music cubes. Alex walks around all day everyday whistling the cube tunes. But she seems to be making leaps and bounds in development everyday. She doesn't look so drunky when walking. People who haven't seen her in a few weeks are amazed at her walking.

Hopefully this cold will blow over and not turn into an infection. Only a few more weeks of summer!!! Wish the weather would warm up so we could at least have a few days of pool time.

Thanks for checking in.

Lori

One month w/o steroids

So Nora has been off the steroid ACTH for 1 month now. Still seizure free-84 days so far. She is starting to slim down and look like her old self again. I do get comments on how big she is for her age etc. I think she'd be pretty big no matter what.

She had speech therapy today and her therapist, Grace, commented on how much more alert and happy she is. She also said Nora is sustaining eye contact longer and seems to be initiating interaction more. Hopefully one of these days she'll just blurt out Mommy and Daddy. We'll see. We definitely have a lot to be thankful for. She is walking and happy and no seizures. And awfully cute.

Emma turns 4 pretty soon so she's getting excited. She got a new bed -she was on a little toddler bed, and is excited about that too.

Thanks for checking in
Lori

Rainy day

Nora had school today. We were an hour late getting there. The traffic was so backed up due to the rain and an accident. So she was at school for maybe 40 minutes. Oh well. We also went for a blood pressure check at Children's Hospital. It has finally come down to normal so hopefully she'll be able to be off of that medication. Still no word on when we would start the new seizure medication. We meet w/ the neurologist Aug. 3rd so maybe after that. I am in no hurry to change anything at this point. She's been seizure free for 11 weeks and I would like to keep it that way.

We had a great vacation weekend. The weather was great and the kids had a great time on the beach. Can't wait to go again next year.

Thanks for checking in
Lori

Weekend getaway

We're off to the Oregon coast w/ our friends Lisa, Tian and Lucas. We'll be back on Monday. Have a great weekend.

Lori

EEG

Eeg resutls are in. It looks good, no more infantile spasms. But because she does have such large cysts in her brain, there are "spikes and discharges" during her sleep pattern. That means she is most likely to have other types of seizures at some point. So she'll need to stay on an anti-seizure med for a while (or forever). They want to introduce a new medication called Lamictal which can have deadly side effects if not given properly. She could get a rash and her skin could fall off and then die. (Stevens-Johnson syndrome) That makes me feel a bit apprehensive. I guess if it is introduced slowly enough, over 6 months, there are no side effects.

So-we'll see about that I guess.

Emma has swim lessons this week and the sun is shining. Thanks for stopping in.

Lori

Sleep saga

So Nora likes to wake up at 4:45 am everyday and not go back to sleep. She isn't crying, just up. We have to put her in the guest room so she doesn't wake up Emma. It wouldn't be a huge deal except she then wants to go back to sleep at 8:00 which is when we need to get going. Nora has to be at school at 9:00 and it takes 20 min to get there. And then Emma has swimming at 10:00 so it really messes up our schedule. She's never been a great sleeper but this is crazy. She only gets 8 hrs of sleep. Then her nap schedule is all screwed up. If she could make it to 6:00 I'd be happy. Grrr......

Anyway, we had a fun weekend. Birthday party, Grandma and Grandpa came home from TX, dinner w/Lucas & co. We leave for OR on Thurs. We are going to the beach for a long weekend. Yahoo. And we don't have ANY doctor appointments for the rest of July. Hope I didn't jinx it.

Thanks for stopping in-don't forget to sign the comments!

Lori

Autism Center

Nora had an "evaluation" at an autism center. The doctor was very nice and informative but we didn't really find out anymore than we already know. She does have autistic behaviors but that may be due to her brain malformations. If she does get diagnosed w/autism, it won't be until she's about 2 yrs. old. The dr. also mentioned one other avenue we could try to get her some services to help her development. But beyond that, it was just another doctor appointment for Nora.

We all had fun watching the fireworks last night. By all I mean Alex and I. Emma watched w/her hands clamped over her ears and Nora slept through the whole thing.

Nothing too exciting for our 5th yr. wedding anniversary. We ordered Thai food and called it good. I guess for 5 years you are supposed to give wood products. I'll give Alex some 2x4's so he can finish the basement playroom project and he can give me some new wooden spoons. Very romantic.

Thanks for checking in. Don't forget to sign the comments. I like to see who's been reading about our very exciting lives.

Lori

July 4th

Nora had a fun time at our friends Mark & Lesley's house last night. Emma really liked playing with all the bigger kids too. Fun times had by all. We are going to the Broderson's house tonight to see the fireworks and have a bbq.

Nora has been very interactive (for her) and very happy and smiley. I think the effects of the ACTH are wearing off and her personality is coming back. She's still working hard on her walking and looks like a drunken sailor. But she's very motivated and determined. The speech therapist sees a lot of improvement in her communication. I have a hard time seeing the progress b/c I see her all day everyday.

Have a great day!! go USA

Lori

EEG

Nora had her EEG today. We won't have the results for a few days but hopefully she'll pass w/flying colors. She hasn't had a seizure that I know of since the end of April. She still has to take some of her other meds (not injections) for at least another month but hopefully that will be it.

Nora also started summer school today. She's in the same class as during the year except she won't have an aide to help her. She's a big girl now, very independent.

Mim and Brynna left yesterday. We are all very sad. It was so much fun for us, especially Emma, to have the company. Of course it's 80 degrees today and was a bit chilly last week.

We have a very busy week. 4th of July festivities on Wed. Our 5th yr. anniversary on the 5th. Nora also has her autism evaluation on Thurs. That should be interesting.

Have a good week and happy 4th!

Lori

Busy day

Nora had a fun day with cousin Brynna, Mim, and Emma. We went up the Space Needle and took the monorail to downtown. It was a fun day. Nora seems to be eating a bit better and sleeping longer. Hopefully her EEG on Monday will come back with positive results.

Have a fun weekend!

Lori

sleepyhead

So Nora missed her EEG yesterday. She threw up again yesterday a.m. and is not eating much. I don't know if this is a stomach bug or due to the withdrawal from the steroid. I know her appetite goes down after the steroids are done but she is really gagging on everything.

Good thing cousin Brynna and Mim are here to help. They took Emma shopping yesterday while Nora and I went to the doctors to see what was up. Hopefully this will go away soon and Nora will feel better.

At least she is sleeping better. We had an actual full night of sleep last night. She slept a whole 9 hours straight. And she's napping like a champ. So hopefully we'll see some improvement this weekend. We rescheduled the EEG for Mon. so I'll let you all know how that goes.

Thanks for checking in.

Lori

Pukey

Poor Nora. Nora had a rough couple of days. She's had a stomach flu. Her temp was 103 yesterday and she was little miss pukey for the last 2 days. Today was much better. Her fever is down and she is eating a little bit more.

Mim and Brynna got here today for the week. Emma is in hog heaven. She loves having her cousin here (and mim too). Nora is still walking all over the place and getting better every day. She has a busy week ahead. Speech on Tues., an EEG on Wed. and the dentist on Fri. Hopefully she'll be feeling better.

Thanks for all the comments.

Lori

Last one!!!

Today was Nora's last injection of the steroid. I am so glad to be done with that. Hopefully for good. Think positive thougts for her. No more seizures!

She is still working on walking all day everyday. That's all she wants to do. She gets going pretty fast and tries to change direction. Her feet can't keep up with her and her big body is too heavy for her wee little feet.

Hope everyone is having a good start to summer.

Lori

Physical Therapy

Nora went to PT today. We ordered her some orthodic shoe inserts. This will help her feet stay in the right position for walking. Now we just have to get her some shoes. All of the just walker shoes Emma wore are way too small for Nora. Emma has teeny feet. In fact she can still fit into some of the sandals that Nora can wear.

Emma has a temp of 101 today so she stayed home from camp. We all feel a bit out of it. Nora woke up at 4:00 am and then fell back asleep around 6:00 and slept til 10:00. Good thing Mim and Brynna are coming to take care of us!!! They'll be here on Sunday.

Nora gets her LAST shot tomorrow(hopefully). Then another EEG on Wed. so we hope it still shows no seizure activity. Think good thoughts for her!

Thanks for visiting the blog- write a comment to say hi. It's nice to know who stopped in to see how Nora is doing.

Lori

OT/Speech therapy today

I took Nora to speech and OT today. She was making lots of noises and sounds and had good eye contact. In her evaluation a few weeks ago, they came to the conclusion she is at about a 3-6 month old level for communication. I think communication and social interactions are the main things she needs to work on for sure. Hopefully we'll learn how to get her to do these things.

The OT (occupational therapist) suggested doing brush therapy on her- every 2 hours. This is supposed to stimulate her nervous system. I have to do some more research. I put a link on the site. My take is that it can't hurt her development. I know a lot of kids with autism get this and Nora definitely has some sensory issues.

I then had to go get her b/p checked. It is still high but getting lower as the steroids leave her system. She'll have to be on all the meds except ACTH for at least another 3 months-Bactrim-an antibiotic, Zantac-for stomach, HCTZ for b/p, Zonegran for seizure control for at least 6 months and I'll have to check her urine and stools still. And still get her b/p checked 2x a week. That is the killer, hiking everyone to the dr's twice a week for a 10 minute b/p check. Can't wait until that's done.

Emma is at camp this week and Brynna and Mim are coming next week. Hooray. Hopefully the weather is good so we can do fun things outside. Nora will still have to have speech, her EEG and a dentist appt. (she grinds her teeth constantly).

Thanks for all your comments. I will try to put a video of Nora walking on somehow. I have to figure it out still.

Lori

Father's Day

Happy Father's Day!!! Alex is out golfing in the rain with his father. He left at 6 am no less. Sounds like the last thing I would want to do on my day. Oh well.

So today is the 1st day in 53 days that Nora hasn't had to have an injection! Yippeee. Only 3 more to go. Mon, Wed, and Fri. Hopefully she won't need anymore. No more needles!!!!!!

Another night of interrupted sleep. Went to bed somewhat early, 10:30 and was woken up by one of Nora's toys left in our room that makes music -at midnight. I have no idea what made it go off. You have to push a button to make it play. Then at 2:30 I hear a big THUMP and Emma crying. She fell out of bed. And to round out the night, Nora is up at 5:15. It's no wonder I have huge bags under my eyes. And Alex asks me if I got on my treadmill- Uh no, I am napping when the girls are napping. Someday I'll use it. I swear.

Long day

Nora had a long day at the doctors today. We had an appointment with the neurologist/ nurse practitioner at noon which of course took 2 hours b/c they were behind schedule. Emma was a trooper too, with only a few mild meltdowns. Nora had to have blood taken which is never fun. So she is taking a well deserved nap.

The NP answered all of our questions-mostly what happens now that she is off (or will be in a week) the steroid ACTH. Basically she'll have an EEG in 2 weeks to make sure there's no seizure activity and then probably another MRI in 3 months. We just have to watch for suspicious activities which could be seizures. That will be a challenge due to Nora and her crazy arms. She's bit of a spaz sometimes. I guess it takes a few months for the puffiness to go down but hopefully she'll start looking like her normal self soon. She and Emma weighed the same today at the doctor's office. 30.5 lbs. Nora is only 30 inches and Emma is 37 inches. Nora is a square basically.

She'll stay on all the other meds too-Zonagran for seizures, some blood pressure meds, (her b/p was still high but better than before) and Zantac for her stomach.

Other than our LONG day at the doctors, no new news. Emma is without a nap today so she's a bit crazy now. Hopefully it means early bedtime!

Happy father's day tomorrow!!!

Lori

Almost done

This is my first post on Nora's new blog site. I am in the process of figuring out how this works. I probably should have started this long ago and used it like a diary of Nora's journey through Infantile Spasms. Anyway, check back whenever you get a chance and I'll try to update you on what is happening.

She is almost finished with her wean from the steroid, ACTH. Only 1 more week to go. She has been on it for 7 weeks now. She has gotten very puffy and gained a lot of weight which is one side effect. Her blood pressure has also been very high so is on b/p medication as well. She hasn't been too miserable except at night. She wakes up between 3:00-5:00 am every day and is up ready to go.

She did start walking about 2 weeks ago. She's bit of a drunken sailor at this point but at least we know she'll get there eventually. She still has no communication except crying and grunting. She sees a speech therapist every week so hopefully we'll get some language in the future.

Nora is also enrolled in a birth to 3 program which helps children with developmental delays. She goes 2 times a week and seems to enjoy it. At least, she doesn't scream the whole time. Nora also receives addtional PT/OT and speech therapies.

Anyway, I'll try to start posting daily. I guess I am a bit late with Nora's blog but I really didn't have the time or energy to figure it out.

Thanks for stopping by!