Wednesday, December 24, 2008

Merry Christmas




Happy Holidays, Merry Christmas, and Happy New Year from our family to yours. Wishing everyone HEALTH and happiness in 2009.
Love
Lori


Saturday, December 20, 2008

Snowdays and ER visit

So Nora has been fighting a bladder infection. On Wed. she had a 104.6 temp so we had to bring her to the ER b/c it was after 6 and her dr. was closed. After a catheter to get a urine sample and some fun waiting in a 4 x 4 room, we found out it was a bladder infection. And apparently, a 104.6 temp is not "unusual" for a toddler. I was afraid her brain was sizzling. So anyway, a big shot of antibiotics and we were on our way.


She seems to feel a lot better. Getting her to take her anti biotic is a struggle. We have to tie her down and practically funnel it in. But it seems to be doing the trick. She even had enough energy yesterday to go for a sledding session.


Speaking of snow, all last week, NO SCHOOL!!! What??? We had about an inch on the roads M & T so school was 2 hours late. Then the forecast was for snow on Wed. so they CANCELLED school the night before. Guess what, not a flake to be found and 35 degrees so the roads were bone dry. Nuts. Then Th & Fr it snowed so cancelled again. If we were in NY we wouldn't have even thought twice about it. Snowdays in NY had to be at least 12 inches of snow! Those were the good old days. So instead of a 2 week break, it was 3.

We go see Santa today and Emma will ask for all the things that I have no idea what she's talking about. Hopefully Santa will be able to bring at least one of her requests. Nora is easy. She just loves cars and babies right now. And she can say Baby! And she does a little rocking action when we sing rock a by baby and cuddles her doll. Very cute. She is also saying Ol-La for Ollie. It was Lala but she put in the Ol. Way to go Nora!

So only another month or so until we find out where she will be placed for preschool. Hopefully the EEU or Alki. I can't believe she's going to be 3 in Feb. Crazy couple of years.

Thanks for checking in!

Lori

Monday, December 15, 2008

snow and no naps

Nora was a bit tuckered out the other night. Didn't even make it to the dinner table.
Loving the snow!

Freakishly large hands run in our family.
Nora has been very whiny lately and not sleeping well. Makes for a fun day let me tell ya. She won't have school today due to closures so we'll hunker down and stay warm. It is only 23 degrees today. I feel like I'm back in Albany.
Nora is still fascinated with all the ornaments and loves to bring them to me. We now have about 50 ornaments on the upper level of the tree and 12 on the bottom.
Well, I am off to make breakfast. Thanks for checking in.
Lori

Friday, December 5, 2008

Music and stuff








Nora is starting to use pictures (PECS) to communicate. She has a group of songs she likes to sing and she'll find the picture of the song she wants and give it to us so we'll sing it for her. Wheels on the bus is the all time favorite. She is also using pictures a lot at school to follow a schedule or to tell the teachers what she wants. It is used a lot with kids who are non verbal.

She is starting to say more words, or sing words. We listen to a song that teaches letter sounds and she can sing the apple, baby, and elbow plus sounds. She is now using the word baby for her baby dolls too. So she learns a lot through music. I looked into a music therapy class for her. We'll see what her schedule is after she goes to preschool. Her OT also suggested hippotherapy but the only one in Seattle has a 2 year wait list.

On the preschool front, she got all her evals back and the district has all her info. She definitely qualifies for services. She is about 1 1/2 to 2 years behind in most areas. She understands more than she can say which is a good and her gross motor skills are good. It is a kick in the gut to find out how low she is but we see so much progress all the time. And she is not a very good test taker. She is very inconsistant and doesn't like to have to be directed for a long period of time. SO the results are a bit off I am sure.

We wrote a letter pleading her case to stay at her school (EEU) and not have to move. THe ball is now rolling. We should know by mid Jan where she will be placed. The program in Emma's school is full so if we don't get our 1st choice we won't even be able to get our 2nd choice either.

We just have to wait and see.

Thanks for checking in
Lori

Wednesday, November 26, 2008

Thanks




Thanks to everyone who checks up on us. Nora is doing great. She is happy and healthy and making progress everyday. It is sometimes hard for us to see but every now and then she wows us with something. Lately she gets so excited to see me and exclaims "Ma Ma" real slow like. It has been almost 3 years and she is finally, FINALLY saying a word for me and only me. You may think it is the same meh-meh for car, or muh-muh for more or gimme that there thing that I want and can't get. But no, really it means me, mommy, mama, the one who gets up at 4 am to change pjs and sheets b/c she pees through her diaper or the one who shleps her to every corner of Seattle for every therapy known to man. ME I tell ya. Very nice I tell ya.

But many others who see Nora every now and then cannot get over the changes they see. Even over the weekend, her teachers see big changes in how she picks up new word, or sounds or signs. She flies through her work in class with her 1:1 teacher. She has started singing some words to songs instead of just humming or putting the same word for the whole song (eg: Emma, emma, emma, emma to Twinkle Twinkle or ba ba ba ba ba-BA BA ba ba to Blue Danube Waltz.) I think we are going to check into doing some music therapy along with sensory integration therapy. And maybe even hippotherapy (horse back riding). I think now is the time for her brain to explode with new pathways for learning. And exposing her to more things and more experiences can only help. I hope.

Everyone else is good. Alex and Emma have a stomach bug that will hopefully be gone by the time the turkey is done.

I am thankful that we can look forward with hope and optimism and not sadness. We'll all be stronger and more thankful for what Nora has gone through.

Happy Thanksgiving

Lori

Sunday, November 23, 2008

Sickies

We all are pretty sick around here. It started last week with Nora having a marathon puke-a-thon Tues. night. I was up every hour changing her crib. Emma stayed home Thurs. and I have laryngitis since then. Of course we had 2 events this weekend- Emma's school's auction Friday and Karaoke last night. Needless to say I was NOT singing. (Our friend Kevin rocked the Barry Mantilo though) I am sure if I had not been talking non stop my voice might have returned.

Nora is feeling fine now. She has started to get really frustrated because she can't communicate with us. If she wants something or is upset, she moans, cries, whines and throws a fit until she gets it. We have to figure out some way for her to tell us what she wants. She doesn't use PECS or use that many signs so it makes it hard for us to understand her.

Emma's parent/teacher conference is tomorrow so we'll see how Kindergarten is going for Emma.

Thanks for checking in!! Off to make pancakes.

Lori

Friday, November 14, 2008

Sensory disorder?

Yesterday Nora's OT/PT at school asked me to fill out a sensory disorder questionnaire on Nora. When we first realized something was wrong with Nora, one of the issues was sensory problems. She still has some major issues- like not liking her hair or teeth brushed, she puts lots of stuff in her mouth, hates having her nose wiped, touches textures a lot, rubs skin (mine or her own) , she doesn't enjoy cuddling or being held against her will, and she won't use a cup-only sippy cups. Sounds pretty typical of a two year old I think. But I think she is more hyper sensitive to these things than other kids her age. I am not sure what this will do for her therapies. Maybe more OT and focus on sensory. I am not sure.

My cousin Kelly, her husband Dan and kids Zoe and Mason stopped by for dinner last night. It was so nice to see them. Emma and Zoe played so nicely and Mason and Nora were funny together. They were so happy and impressed on Nora's progress.

Thanks for checking in
Lori

Sunday, November 2, 2008

Halloween and such














Nora and Emma had a fun Halloween. Mim and Grandfather were here for a week visiting so it was extra fun. Nora was a ballerina (we tried a fireman and princess but she wouldn't stand the costumes) and Emma was Princess Leia. Our friend Dylan was Spidy. Nora got the hang of going up the steps to get a treat. Once she figured out that candy was involved, she was all in. But she did want to run into every house we came to. And the rain stayed away. Phew.
It was a very busy week. A trip to the pumpkin farm and corn maze (which took forever to find our way out), haircuts for all, basement projects, visits to the girls' schools, and lots of love from Mim and G-father.
School is going well. Nora is learning new things everyday. She now has about 10 words (some are just approximations-mo for more and la for light). But she is trying to communicate her wants and needs. Big progress. Still doesn't call me Mama, although she CAN say mama, just not to me. Grr.. Gaga is Dada and Emma is clear as day. Someday soon I hope.
She is starting to give up naps somewhat. If she sleeps too long during a nap, she gets up at the crack of dawn so I am trying to figure the whole sleep thing out.
Other than that, we are pretty much doing the daily grind. School, speech, play, sleep and eat. She is a happy happy girl.
Thanks for checking in
Lori


Wednesday, October 22, 2008

Agenesis of the Corpus Callosum

Lately I have been reading more and more about Nora's condition, Partial Agenesis of the Corpus Callosum. I just added another link for the NODCC. I think I focused so much on the Infantile Spasms and seizures I didn't really think that Nora's delays were caused by the missing part of her brain. BUT as it turns out, she has many of the developmental delays related to ACC (agenesis of the corp. cal.) After going to the neurologist a few weeks ago, I realized no one really knows why she is delayed or what disorder category she fits into. Some of her symptoms or delays could also be chalked up to the seizures. It is so hard to tell. Regardless, it would be nice to be able to find a specialist in this area. There is a guy in San Fran, I think, that I may try to contact. It's just so hard to try to think so far ahead and wonder what she'll be like as a 19 year old. She may never talk, be potty trained or have a job but then again, she may. But hopefully with early intervention we'll make sure she reaches her full potential.

And that brings me to preschool. The ball has started rolling on her placement for preschool. When she turns 3 in Feb. she'll be moved to another class and maybe another school. I met with the district nurse and psychologist yesterday to discuss her delays, needs, strengths, medical history etc. Now they will put together a report to pass along to the special ed dept. who will try to decide which preschool is best for Nora. They of course try to put kids in neighborhood schools which theoretically makes sense. But I think the EEU is the best choice and Nora will hopefully get to stay. We won't find out until January.

That's all my thoughts of wisdom for the day
Lori

Friday, October 17, 2008

Pre school stress




Hi- I have been stressing over what will happen to Nora in Feb. when she turns 3. Right now she is at a wonderful school, the EEU, in the birth to 3 program and we want her to stay there for preschool. BUT when she turns 3 the funding switches from state $ to school district $. Therefore she is part of the spec. ed prog. in the Seattle schools.

They decide where she goes for preschool. There are 3 developmental preschools in our area, one being at Alki where Emma is in Kindergarten. The others are a bit further. I went on tours of all 3 and they are good programs. Nora would do fine I am sure but it's just not the same.

The EEU is on the UW campus and is a teaching school but part of Seattle schools. They would have to pay to bus Nora to school. (I know, who puts a 3 yr. old on a bus?????) They try to put kids in programs as close to home as possible. But I want her to stay at the EEU for many reasons.
1) I think it is the best program for her,
2) we know all the staff (love them) and they know Nora (love her),
3) I have a huge support group of other parents and teachers
4) they have typical peers in the classes
5) they have a higher staff to student ratio and
6) it is a 5 day a week program.

We start the process next week to meet w/ the district and do testing etc etc. The biggest catch to all of this is if there is no space available in a preschool class at the EEU in Feb. then we go to the next school, Alki, and if there is no space there, to the next one etc etc. So it isn't really about what is best for Nora but if there is availability and transportation. And they said "You can always try to get back into the EEU next Fall". But of course I would probably not want Nora to have ANOTHER transition to a new school or something. Grrrrr.... I just want her to go to the EEU forever. Seriously, it is a huge building of love and goodness. Everyone knows us, Nora goes to the office secretary, Zee, every day as we leave and gives her a big hug. Some of her old grad student teachers are now teaching preschool so it would be just perfect.

Other than that, we have just been busy remodeling the basement, doing Kindergarten avctivities, getting ready for Mim and Grandfather to visit and Halloween.

Hope everyone is well.

Thanks for checking in
Lori

Wednesday, October 1, 2008

No news

We've been pretty boring around here lately. We had our house painted dark blue with white trim and a burgundy door. Looks so much cleaner than our old dirty gray. And our basement is ready for the floors to be done, tile and carpeting. Then we'll finish the bathroom and painting and we'll have a playroom!

Nora is doing great. She seems to be learning a new trick everyday. She is trying to say tree, (tt) cheese, (chzzz) and apple (a-ball). She started pointing at the lights. She has never pointed at anything before. She'll touch point to something but never anything far away and to get someone's attention. She also said NuNu for Nora. I sometimes call her Nunu booboo as a nickname and as she looked in the mirror I said Nunu and she repeated it. It sounds different from her no no-neownewo. She's a subtle one that girl.

I will have her first transition meeting (into the public school system) Oct. 21. I'll get to tour 3 other developmental preschools in our area as well as her school, the EEU. One of the preschools is in Emma's school. That is probably my 2nd choice, my 1st choice is to stay where she is. There is just so much more at the EEU than anywhere else, more resources, more parent support, more kid support, more classroom options. Oh I hope I hope I hope she gets to stay. If there isn't a space for her then she has to go somewhere else.

Emma is doing well too. I volunteered in her class today to help with an art project. There are 28 kids-17 boys. Yes 17 boys. That's a lot of boys . And Emma is the tiniest kid in the class. She apparently likes to chat with her neighbors. Her teacher says she is quite social. Hmmm....
Emma now wants to be Princess Leia from Star Wars. Not Dorothy for the Wiz of Oz. She was the witch last year. We let her watch Star Wars and she is now hooked.

Thanks for checking in
Lori

Friday, September 19, 2008

Normal


We went to the neurologist today to follow up on Nora's last EEG. He said it looked normal. Hmm. I asked if it's normal for HER or just normal. He said normal. But this is only a slice of time that we are seeing and it may not be normal all the time. So it could look not normal at another time. But she looks good. So hooray for that.

And we keep her on her current medication-lamictal until next May when we see him again and start weaning. I was hoping to get off all meds but he said that kids with IS who are on meds, seizure free, for 2 years have only a 30% chance of recurrence but kids who go off earlier have a 70% chance of recurrence. My view was that she seemed to do so well once off zonegran that she'd do even better med free. nope.

Then I brought up the fact that she is missing part of her corpus collasum and whether or not that is causing her delays rather than the seizures. Of course no one can tell us for sure. There was SOMETHING that made her brain not form right when she was developing. We don't know what THAT is. THAT is what made her have cysts, THAT is what made her brain not grow an important piece, and THAT is what made her have seizures. PROBABLY. Once again, it is a big question mark.

SO my next concern is what we can do now. Apparently we are doing everything known to man (or at least the neuro) at this time. But I want more. I want to see more progress. I want her to be so far beyond where she is. Don't get me wrong, I am so thankful she is doing so well and progressing but it is just not fast enough. What about when she turns 3 and we have to switch to the public school district? What if they don't give her everything she needs? I won't be able to watch through a window like I can now to make sure they know what she needs or is trying to say. If she isn't fixed by the time she's 3 how will I know if she will ever be? So once again I will stress and agonize for the next 5 months worrying about what school she'll be in when her birthday rolls around. awesome.

Lori


Sunday, September 14, 2008

No-no

Nora is such a stinker. I'll say no no Nora when she climbs on the table, I'll say no no Nora when she tries to sticks her hand in the toilet, I'll say no no Nora when she grabs the mouse when I am on the computer etc. etc. Now, every time she goes to do one of the forbidden activities, she'll say newoo newoo (no no) and then do it anyway. So much for no no.

And everyone is Emma. She'll see a girl at the park and exclaim EMMA! She'll she herself in the mirror and exclaim EMMA! She'll see the mailman and exclaim EMMA!

And everything is BA. Her cup is BA. A book is BA. Ollie is BA. Everything but Elmo. and Emma.

Alex has been in China since Mon. and gets back tomorrow. Yeah! The drywall guys start on the basement tomorrow. Yeah!!! And Nora starts school again tomorrow-yeah!!!

Gretchen and I have been ignoring our children while playing Rock Band on Wii. I highly recommend it. (I'm like Eric Clapton on the guitar by the way) Addicting and fun.

Thanks for checking in
Lori

Sunday, September 7, 2008

fever

So Nora has had a fever for a week now. It hovers around 101 but goes down to 99 and up to 102. We went to the Dr. on Thurs. and no ear infection. I had to try to get a urine sample (urinary tract infection) but no luck. (they give you this bag to stick to her to try to catch some pee) Didn't work.

Then she seemed better on Fri. and we actually saw another Dr. for a consultation for vaccines. He will separate the MMR for her and sees a lot of kids with special needs. He has experience with kids who have IS, Agenesis of the corpus callosum and cysts. She still had no ear infection.

So Sat I went back to get more pee bags and got a little sample of course the clinic is closed by noon. So I have to keep it in the fridge. But today she still has a temp of 101. There is an after hours clinic at the children's hospital. They will probably give her a catheter to get some urine. Not fun. But a week of fever is nuts. AND Emma has a bday party today so Alex will have to bring Nora by himself. UGGGGG.

Why does this always happen to poor Norsie. Nothing is ever easy. She is going to hate being held down and have a catheter put in. but I don't think there is any other way to see if she has an infection.

Emma seems to like kindergarten although it is hard to get any info from her. Hopefully she'll make some new friends soon and feel like part of her new school (me too!).

Thanks for checking in
Lori

Monday, September 1, 2008

Gak!




Emma and I made Gak the other day. http://homeschooling.gomilpitas.com/extras/Gak.htm

Nora really liked playing with it. Yes she did try to eat some, but mostly she just liked to feel it. It's cool and squish. It was so nice watching Emma and Nora enjoy the same activity. It really is fun to feel. And easy to make.
Only 1 more day until the big K. Emma is getting excited. And I am ready. Alex has been working in the basement non stop for the past 3 days so I had my fill of girl bonding time. School here we come!! And Nora starts back up the week of the 15th.
Happy Labor Day!
Lori

Wednesday, August 27, 2008

Haircuts, family and fun





Nora's hair before we went to NY



Nora's hair after we went to NY
We are finally back from our 11 day trip to NY. We were supposed to be back Sun. night but got delayed and came back Mon. night instead. It was so great to be back to see my family and friends. We did lots of fun things.

First things first, haircuts. We all got 'em. Thanks Bev!!!

Then an overnight at Loon Lake at Uncle Mark's camp. (Aunt Maura's too) Katie and Brynna did a great job keeping Emma occupied and entertained. Mim and Aunt Maura watched Nora and Alex and I relaxed. Very nice. Lots of boat riding, lake swimming, sand playing, smores eating and fun.

We went back to Mim and Grandfather's and saw all of our friends, the Wilsons, the Dischiavos, the Martinovich/Fitzpatricks, the Corrs, the O'Sheas, the Lawrences. Fun fun. Alex and I got out to eat, saw a movie and I got a girls night with Jen, Amy and Erin.

Now we are back to the rain. and chores. and taking care of my kids by myself! It is so nice to let Mim take over (and I get to read a book).

Emma starts school in 1 week!!!!! Very exciting.
Thanks for checking in
Lori

Monday, August 11, 2008

EEG

So Nora had her EEG last Wed. It went fine. We had to wake her up early (they said 4 am) around 5:30 am. She had a busy day, we went to a park for a field trip with her class then had lunch. She was nice and tired by 1 pm.

It takes about 30 minutes, maybe more, to get all the electrode things on her head. She screamed, not whimpered or cried but SCREAMED the entire time. I thought she was going to make herself throw up she was so upset. They have to swaddle her in a big blanket because she fights so hard to get away so she was all sweaty. 1st they have to measure and mark her head, then clean the spots then they finally attach the things on her head and THEN they wrap her head in gauze. Not fun for any of us. Then the expect her to be able to sleep with all this stuff on her head. She actually fell asleep within a minute of sitting on my lap. Poor girl. Tuckered her right out. She slept for 1/2 hour or so then we had to wake her up to take everything off again. Huh. Hopefully the results will be good and we can finally get her med free. We don't hear anything until we meet the nuero in Sept. This could be her last EEG for a long time. Yippie!


Emma's 5th bday is Thurs. We had her party on Sat. She had a lot of fun and got lots of nice presents from her friends.

So we are off to NY on Friday for 10 days so I probably won't post anything for a while.

Hope all is well!!!

Lori

Sunday, August 3, 2008

Black Sheep

Nora has been singing the baa baa black sheep song for a while now and I think she has perfect pitch. (well, at least to my ear) But she sings "baa baa BAA BAA ba ba ba ba baaaa" to the exact tune. She does it all by herself without any prompting. It is so funny. And if she hears the itsy bitsy spider song she does spider hands and hums along. So cute. But after 30 rounds of the spider song, I am ready to lose it.

I had a great day. I finally used my mother's day facial gift fur-ticket. (as emma called it) It was lovely. And Emma and I went to our friend Jane's 5th birthday party in the morning. Alex stayed with Nora all day and is now spent on the couch. Hmmm,,, it's a bit tiring to stay home and entertain our 2 year old isn't it? I had a relaxing day anyway:)

Emma goes to Zoo camp all week and Nora has her EEG on Wed. Emma's party is on Sat. and then we are off to NY for 10 days. Time flies.

Hope everyone is well and having a great summer
Lori

Friday, July 25, 2008

EEG scheduled

I emailed our neuro the other day wondering if I could meet with him to discuss weaning Nora off her anti seizure medication, Lamictal. She has not had an infantile spasm type spasm since May of 2007 and she has never had another type of seizure. I think he likes to have kids on meds for 2 years after seizures are controlled but I don't want her on them just because. There should be a reason right? Anyway, we need to have an EEG before we meet with him so Nora will now have her 4th or 5th EEG. Can't quite remember. SO another day of craziness for us on Aug. 6th. I am supposed to wake her up at 4 am so she will be good and tired at 1:00 pm. Huh. Great. SO not only will she be sleep deprived, I will too. Hopefully it will show that her brain activity looks "normal" and we'll be able to be med free. She'll never have a normal eeg due to her cysts and agenisis of the corpus callosum. But normal enough.

She put 2 words together for the speech therapist on Tues. She said "go-go mo-mo" indicating she wanted the hokey pokey Elmo to go. She only repeated it after her therapist said it but she did say it!

Emma and I had a good day on Thursday. Grandma watched Nora and I took Emma to her art class and got to go to the Y. We then went out for lunch. Then we spent the whole day at the pool with Lisa and Lucas. Alex met us there with Nora and a pizza and a evening swim. It was a very good day indeed. I don't get that many opportunities to spend the whole day with Emma alone and it was so nice to give her my whole attention.

We had some friends over today to play which was fun. I joined Facebook and have gotten messages from some long lost friends. Especially my really good friend Zeth from high school who I lost touch with. It was so good to hear from him and reconnect. Weird how you can not talk to someone for 10 years and still feel like you are still good friends. Good weird.


thanks for checking in.

Lori

Wednesday, July 16, 2008

Back from vacation

We had a great trip to Seaside, OR last Wed.-Sun. Even 2 sick girls didn't stop us from having fun at the beach. On the 4.5 hours down, Emma didn't feel so hot and about half hour left of the trip, she threw up. Luckily she made it into a bag. She had 103* temp. Poor girl. She had a fever and the pukes on and off for the first 2 days. But then she felt great and Nora started to feel very hot. So she was up and down with a 103* temp for the last 2 days. Luckily she didn't have any night terrors while we were there.

She saved up for the night we got home. She had a short nap on the way home in the car and was exhausted. She went to bed for about an hour and then was screaming non stop for about an hour. I was about to go to the ER thinking it was an ear infection or something. But she calmed down and played for a bit. Then slept the rest of the night.

By Monday am she seemed fine and no fever so I took her to school and made a dr. appt. for later that morning. Turns out she has tons of sores all in her mouth and throat. They thought it might be hand and mouth disease but it's probably just viral. Nothing to do for it but wait it out. She's been fine ever since. She went to speech and school yesterday on no nap and was fine. SO..... all's well that ends well.

School is going well. She is in class with the group of peers and one or two other special needs kids on M/W. T/Th she gets ABA therapy. All of the kids in her group have some level of autism. She is just lucky and gets extra time because I pushed for it. When she turns 3 she won't qualify for it anymore but it has really helped. We may have to find private therapy. I think some of the grad students from UW who work at her school may do it on the side.

Nora can do the movements to wheels on the bus, itsy bitsy spider, twinkle twinkle. She can sign please, more, milk, all done. She can wave bye bye. I went to the Y yesterday and there was a women at the child care that I haven't' met yet. I briefly told her that Nora was delayed yada yada yada and went on my way. When I picked her up, she asked what Nora meant with her hands up in the air. I was like "It's the spider song, duh!" well not duh but come on, anyone can figure that out!!!! She's also been repeating some words-mama, dada (which is ga-ga for some reason, she can say the d sound), no-no, and Emma. But she doesn't really do any on her own except mElmo. She loves her Melmo.

Poor Emma, I didn't sign her up for camp this week b/c I thought she'd want a break but she just ends up tagging along with me. Next week she has 2 days of art camp and then she has zoo camp in Aug. We are having her 5th birthday party at the YMCA on the 9th. Then we are off to NY for 10 days to see all my peeps in Albany. Then Kindergarten starts. Yikes.

It was a long one and I have to get the girls fed and out the door in a half hour to get Nora to school. And shower. Hmmm...

Thanks for checking in
Lori

Monday, July 7, 2008

Change it up a bit

I am changing the format of Nora's blog just because I needed a change.

Nora started summer school today with a whole new group of kids. We switched days so she now goes M/W to class and T/Th to one on one. She did just fine. She's one of the big kids now. She is still the most needy kid in class as far as I can tell. It seems that 2 of the kids have a slight speech delay and one boy has autism but he can talk. I have a good group of parent friends from Nora's old class so it is a bit strange with all the new parents. I have to go over Nora's story with all the new people. Tiring.

I took Emma and Nora to the park and ran into one of the guys who works with Alex. I don't think Alex shares as much info as I do. So after chasing Nora as she escapes from my view into the street (for the 2nd time) while I was helping Emma go down the pole, I gave up and was packing it in. I then had to explain Nora's deal with Alex's friend who has a daughter 9 months older than Nora who is potty trained, sliding down with pole by herself (she's 3!) and talking up a storm.

It is so frustrating because when you look at Nora, she looks like a big girl (she and Emma weigh the same) but she is just a baby in a big body. She babbles and eats sand like a 1 year old. People see her at the store and talk to her and expect a response from such a big girl. She just does her itsy bitsy spider hands and wants you to sing for her. Or she grabs strangers legs at the park. She's very friendly for sure. Or we go to a party where not everyone there realizes her needs and knows to look out for her so we end up chasing her around the whole time instead of relaxing. I don't know what we are going to do this week when we go to the beach in Oregon. She just runs and runs and doesn't care if she goes into the street or water or in front of a bike. She's a walking collision waiting to happen. Should be interesting.

So when I figure out how to put photos into my actual post, hopefully there will be more changes to the blog.

Thanks for checking in
Lori

Tuesday, July 1, 2008

Visitors and climber

Mim and Katie have been here since Friday. They go home on Thurs. ;( Emma and Nora are so excited to have their cousin (and Mim) here. Emma loves all the extra attention and someone new to play with. Katie is great to have around. Nora loves her too.

Nora decided to scare Mim to death last night while Alex and I went for sushi. Nora has apparently now figured out how to climb (or fall) out of her crib. Mim heard a big thunk and Nora was sitting on the hardwoods next to her crib crying. We had just moved her room to the guest room which has no carpeting. Needless to say, we went out to buy a rug today. Hopefully that will be a softer landing if she keeps up the shenanigans. We still have to paint and make it girly but it will be nice for her to have her own room and Emma can have her own. Now Alex just needs to finish the construction in the basement so we have a real guestroom.

Nora is still doing well in speech. She has started signing for please. She has "more" down to a fist punching the other hand. (it normally looks like fingertips touching) She means business.

Have a happy 4th! Our 6th year anniversary is on the 5th. Seems so long ago and it's only been 6 years! Thanks for checking in

Lori

Wednesday, June 25, 2008

Mo-mo

Nora has just discovered Elmo and calls him Mo-mo. This may be her first real word. I know she has said mama, but it was only twice in regards to me. But every time she sees Elmo, (or a stuffed frog) she says Mo-mo. She is using the sign for more and all done. We're trying to get her to sign please and milk. She can physically do those signs, just not on command and in reference to the meanings. Hopefully she'll start signing or talking sooner than later. She also sings the song Baa baa black sheep. She has a tune and says ba ba ba ba ba to the tune. Very cute.

Her speech therapist is using 2 flash cards and asking her to point to an object. Nora will 9 times out of 10 point to the correct picture. Pretty good. She starts back at school July 7 so we haven't been doing much work at home. Emma is at camp this week at her school so she's pooped at the end of the day.

Only 3 more days until Katie and Mim get here. We are all so excited. Nora has been sleeping throughout the night for the past few days so hopefully that will the case while we have visitors.

Happy summer! Can't believe it's almost July~

Lori

Friday, June 20, 2008

Finally

After a week of waking up at least twice a night, Nora finally slept all night last night. I have no idea why. We kept her on the same schedule all week but for some reason she slept from 8:30 pm-6:00 am. We moved her bed to the guest room and will need to move the guest bed into the office and the office somewhere. At least she'll have her own room and will be able to scream her little butt off without waking up Emma. I hope the bad stretch is gone for at least a few weeks. Give us all some well needed sleep. Phew.

Lori

Wednesday, June 18, 2008

No sleep

Nora's going through an awful phase of waking up in the middle of the night and staying awake. Screaming most of the time or crying. We went to the sleep doctor yesterday and he thinks it may be night terrors. What to do about it? Have her on a schedule of naps and regular bedtime. Hmmmm... I try but her school sched is so crazy that she doesn't nap the same time everyday. She wakes up between 5 and 6 every morning no matter what. Makes for a long day. If she wakes up at 6, maybe she'll take a 2 hour nap, then to bed by 7:30 or so, wakes up at 11:00 and then again at 2:30-4:00 am and up again at 6 am. Ridiculous.

Also, she and Emma share a room so when she starts to go nuts we have to put her in the pack n play in the guest room or our room. So nobody is sleeping. Our walls are not super sound proof either. Alex has been gone since Sunday so I am extra tired. And grumpy. So don't call me, I may be napping.

Lori

Thursday, June 12, 2008

Last day

Today was Emma's and Nora's last day of school. Emma for the summer, Nora until July 7th and then she'll keep going regular schedule for the summer session. Emma will be in kindergarten in the fall . Big big girl.

Today was also our last official playgroup/mom's group get together. We've all been meeting every Thursday for the last almost 5 year!!!! There were 7 families here tonight. The big kids are huge and the little kids are big!!! It was an end of an era. I am sure we will still get together, just not on a schedule. This summer will be busy for all of us. Then kindergarten for most. We've lost 2 members-Jodi and Lauren (and Emily) to London and Janet and Reece (and Finn) to Bellingham.

Thanks to all the moms and kiddos (dads too ) for the wonderful times and memories!!

Thanks for checking in
Lori

Friday, June 6, 2008

Auction

Nora's school's auction was last weekend. Thank you to all my friends and family who donated product or $. They raised over $630,000! (it was less than last year -$750K but oh well) The final tally isn't in but that is pretty amazing. We bid on a few things but it got a bit ruthless. And I was a bit too tipsy to pay attention. We did win a class art project from Nora's class. And Alex is in a Texas hold em poker tournament to benefit the EEU. Fun was had. Our friends the Wilsons, Brodersons, and Richardsons joined us. Thanks for coming friends!

Nora's field day was yesterday and Emma skipped school to come with us. And it poured. It's been raining for 2 weeks straight. When will summer get here? The girls are done with school on the 12th. Hopefully the sun will come out soon.

Thanks for checking in!
Lori

Sunday, May 25, 2008

Signs of things to come

Nora has learned 2 signs-for all done and more. We have been using signs with her since she was born. Emma was such a great signer at a pretty early age, we just automatically did it with Nora. BUT we haven't had any positive feedback so we have gotten a bit lazy. They do them at school but we haven't seen any progress.

So Nora decides to learn "more" pretty much without us realizing it. All of a sudden, she's a signer. She signs for more m&m's, more cake, more ring around the rosy, more tickles, more swinging, more milk, more anything! She pretty much uses it all the time now. We'll have to try to get her to recognize when she wants more or if she wants help or please. It's a good "sign" that she'll be able to learn more signs in the future. (and maybe talk?) Yippeeee!!!

Emma had 2 birthday parties last night (Happy 2nd birthday Franny!) and was pooped out last night. The other party was a girl's from school and it was a sleepover. I picked her up at 9:30 just to be on the safe side. I didn't want a 3 am phone call.

It's a rainy day but hopefully we'll get some more sun this weekend. Next weekend is Nora's school's auction (the EEU). They raised $750,000 dollars last year. Thanks to all my friends and family who donated to the cause. They do a lot with autism research and teach other schools how to teach autistic children. Nora has progressed so much this year. It's pretty amazing. Hopefully we'll raise as much or more money this year.

Thanks for checking in!
Lori

Wednesday, May 21, 2008

Shadow

Nora found her shadow the other day. Very cute. I can't remember when Emma did that, around 1 or so? But I was pretty impressed. And I was Q-tipping her ears the other day, and she had one too. She tried to stick it in her ear. I thought that was pretty cool too. And she holds hands with people now. She used to just pull away but now she actually holds on. Big girl.

Emma's recital is coming up. Lots of dress rehearsals and photo shoots. Very professional. And she's 4. Crazy. She's also taking swim lessons. We have a fun summer coming up. Can't wait until the warm weather gets here and stays.

Both girls love to be outside. Nora has a fit if you make her come in. She romps around and rides her toys and goes down the slide and likes to swing. And play with balls. She's getting good at rolling and throwing them. But she really loves her Boobah. Creepy old Boobah.

Thanks for checking in.

Lori

Tuesday, May 13, 2008

Mother's Day poem

Happy Mother’s Day: Mothers Lie
By Lori Borgman

Expectant mothers waiting for a newborn’s arrival say they don’t care what sex the baby is. They just want to have ten fingers and ten toes.
Mothers lie.

Every mother wants so much more.She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

She wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions.She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.Call it greed if you want, but a mother wants what a mother wants.

Some mothers get babies with something more.
Maybe you’re one who got a baby with a condition you couldn’t pronounce, a spine that didn’t fuse, a missing chromosome or a palate that didn’t close.The doctor’s words took your breath away.It was just like the time at recess in the fourth grade when you didn’t seethe kick ball coming, and it knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled him for a checkup and crashed head first into a brick wall as you bore the brunt of devastating news.It didn’t seem possible.That didn’t run in your family.Could this really be happening in your lifetime?

There’s no such thing as a perfect body.Everybody will bear something at some time or another.Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery.Mothers of children with disabilities live the limitations with them.

Frankly, I don’t know how you do it.Sometimes you mothers scare me.How you lift that kid in and out of the wheelchair twenty times a day.How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear.

I wonder how you endure the clich├ęs and the platitudes, the well-intentioned souls explaining how God is at work when you’ve occasionally questioned if God is on strike.I even wonder how you endure schmaltzy columns like this one-saluting you,painting you as hero and saint, when you know you’re ordinary.You snap, you bark, you bite.

You didn’t volunteer for this, you didn’t jump up and down in the motherhood line yelling, “Choose me, God. Choose me! I’ve got what it takes.”

You’re a woman who doesn’t have time to step back and put things in perspective, so let me do it for you. From where I sit, you’re way ahead of the pack.You’ve developed the strength of the draft horse while holding onto the delicacy of a daffodil.

You have a heart that melts like chocolate in a glove box in July,counter-balanced against the stubbornness of an Ozark mule.

You are the mother, advocate and protector of a child with a disability.You’re a neighbor, a friend, a woman I pass at church and my sister-in-law.

You’re a wonder.

Sunday, May 11, 2008

Happy Mama's Day

Hope all those mamas out there are having a lovely day. Make sure you give your little (or big) ones a big hug. Be thankful for their health. I am so thankful that Emma is such a happy (and sometimes whiny) girl. I am so thankful that Nora can walk, smile, laugh, and play with her Boobah. Even if she can never say I love you to me, I know she does.

Happy Mother's Day Mom!

Thanks for checking in
Lori

Monday, May 5, 2008

Nothing new

Nothing new to post. Nora has been loving going outside now that the weather is warmer. She likes to go in her car and to go for walks around the block. She is pretty good at going up and down the deck stairs (only 3) and will try to escape anytime she sees the door open. She's doing fine in school. She'll keep going throughout the summer. Emma will be in some daycamps and swim lessons.

Emma is starting to be such a great reader. I read with her class every Monday and she is really improving. We have the BOB books and she is able to sound out most of the words and gets so excited about reading. I am still nervous about kindergarten, she will be THE youngest one in her class most likely and the smallest. She is a peanut. But academically, I am sure she'll be fine. She just won't be able to drive until she is in college.... well she'll be a late bloomer for sure. That is a good thing.

Happy spring
Lori

Wednesday, April 30, 2008

It's official....

I think I can officially say that Nora has said "mamamama" in reference to me. When I picked her up from class last week her teacher said "There's mama!". Nora ran over to me saying "mamamamama". I wasn't sure if she was just repeating or if she really knew she was talking about me. But I took it anyway. Then today, I picked her up from the Y daycare and as soon as she saw me she ran over saying "mamamama". SO I think it is official. She knows who I am!!!! Yay Nora!

So her 1 year anniversary has come and gone. She has been seizure free for 1 year. I am so glad we never had to deal with any reoccurring seizures. There are so many kids out there who have Infantile Spasms and are still dealing with seizures everyday, multiple times a day. Nora is very luck that the 1st medication we tried got rid of them. PHEW. And she is doing great. She is happy and progressing everyday and we are all starting to feel back to "normal" again.

We will never be a typical family because Nora has special needs but at least the medical nightmare is over. Knock on wood. So on to bigger and better things. Like talking. And kindergarten for Emma next year! Yikes. Have a great day.

Thanks for checking in.

Lori

Saturday, April 19, 2008

Almost a year

On April 24th it will be one year since Nora was diagnosed with infantile spasms. On April 26th we started ACTH. I was looking at pictures the other day and she was unrecognizable. It is amazing how far she's come in one year. She is such a happy little person and is always smiling. She can walk, run, go up and down stairs, say some sounds, understand many commands, feed herself, roll a ball, play with her sister, laugh, play with toys, giggle, throw temper tantrums :), climb up and go down a slide, get mad, cry when I leave :), and so much more. I never would have known we'd be here one year ago. I was so sure she'd be "retarded" and not be able to do any of these things. But she can. And we are so very very lucky.

Lori

Look down at the pictures and see how Nora looked after the ACTH and see her now.

Friday, April 11, 2008

Infantile Spasms and TSC: A Devastating Diagnosis

Here is a video that explains what Infantile Spasms is and how it affects our family. Nora does NOT have Tuberous Sclerosis but the results of IS are the same

Saturday, March 29, 2008

Spring Break

So the girls are on spring break. I hope it doesn't rain the whole week! It snowed yesterday. Crazy. It may be a long long week inside.

Nora is changing so much every day. Her teachers comment on how much she is doing since the beginning of the year and even a few months ago. She is so much more animated and vocal. She'll let you know if she's mad. Still no words or signs. She can say a few animal sounds-a crow says caw caw, a sheep says baba, a duck, a dog, a lion. She knows when we say it's time to eat, milk, go upstairs, go out, kiss. She'll tap her head on command, clap, go get her baby and knows who Emma is. It is really amazing how much she understands us now.

Today I was holding her but not looking at her. She was making noise but I didn't turn to look so she grabbed my cheek and pulled my face to look at her, very intentionally. Pretty funny.

Emma has been a beasty girl lately. Not listening and defiant. SO we got a sticker chart to reward good behavior. She had a fit. She did NOT want a chart for some reason. There was no convincing her that it was a POSITIVE thing. So we'll see if this helps. If not it really will be a long spring break with no school! Yikes.

Lori

Thursday, March 20, 2008

new link

I just found this new epilepsy website that tells many different stories. Michael and Caroline's stories are the most relevant to Nora. It is very interesting and informative. Check it out. http://www.massgeneral.org/childhoodepilepsy/index.htm

Hoppy Easter!
Lori

Tuesday, March 18, 2008

Who's Who

Not much exciting here. Emma and I played hookey today and went to see Horton Hears a Who. It was pretty cute and Emma only got scared once. (Scary vulture Vladimir) She is a G rated girl. Anything remotely scary and she's a mess.

Nora had school this morning and speech therapy after. She is doing great. Nothing really new to tell. She is obsessed with looking out the windows at the cars going by. Anytime we go for a walk she has to stop and watch the cars. We live on a relatively busy street so it takes a looooonnnnnnngggggg time to go 1 block. And she hates having her hand held which makes it that more fun to go for a walk.

Anyway, bath and bed time.

Check back soon. I'll post some Easter pics!
Lori

Sunday, March 9, 2008

Sleepless in Seattle

So for the past 7 nights, I have been woken up at least once every night. Either Nora wakes up and putzes around for an hour or so, Emma wets the bed or is "scared" or Ollie starts whining to go out. Alex has been in Europe for work since Sunday and finally gets home tonight. I am exhausted. And I have been extra grumpy and have had no patience. Just ask Emma. And Ollie.

And I can't think of anything to make for dinner. That's so frustrating. I don't mind the cooking part, just the thinking of what to cook part. Grr...

Nora is doing great. She is always such a good girl. (except at 4 in the morning) She just keeps herself occupied and is always happy. School is going well, speech therapy is good and we've been doctor free for a few weeks now. She is scheduled to go in for her 2 yr. check up and get her over over due vaccinations but I am so reluctant to mess with her progress. If a vaccine has any chance of making her seizures come back or make her "autistic" characteristics any worse, I'll chance getting measles, mumps or rubella or pertussis. Really. I have no problem with that. All the doctors of course recommend vaccines but it really makes me nervous and I think a mother's intuition in best. I am just not ready and I think messing with Nora's progress is not the smartest move. So, we'll see. Maybe the chicken pox vaccine. I haven't heard any horrible side effects of that one. I am sure there are stories out there.

Well, thanks for checking in. Hopefully we'll be better rested when Alex gets home and I won't be such a grump.

Lori

Saturday, March 1, 2008

Bowling

We went bowling last night with Lucas, Lisa and Tian. It was a challenge keeping Nora occupied. She just wanted to walk around which made it hard to watch Emma as well. At one point she got a bit ahead of me and went onto a lane. And I went after her and proceeded to fall flat on my back. They are slippery! So now I have a sore elbow, good thing it wasn't my bowling arm!

I had Nora's IFSP meeting on Thursday. That is the document where we put down the goals we want Nora to work on for the year. We had updated it in Oct. because she had completed all of her last year's goals and now we put some new ones in as well. She has been developing quite quickly which is good.

She still has trouble with attention. She won't do an activity for more than a few minutes at a time but she is getting better. And she is trying to verbalize with many sounds, they just don't mean anything yet. She needs to learn a way to ask for something, point, sign or say the word. She gets very frustrated and mad so she starts to tantrum until she gets what she wants.

I need to work on that at home because I usually just anticipate her needs and don't really make her ask for things. It is much easier for me but it is not good for her. Her motor skills are pretty good. She needs to work on going up and down stairs safely and learn how to use ride on toys and roll a ball. She also needs to use a spoon. She is starting to learn how to point if someone prompts her by touching her elbow. And maybe using some words???? Maybe more, go and uh-oh. She definitely understands more than I had really thought. The teachers asked me to write down all words she understands and responds to.

SO some more positive news for Nora but she still has a looooooong way to go.

Thanks for checking in
Lori

Thursday, February 21, 2008

Good News

I took Nora to the neurosurgeon yesterday and found out that her arachnoid cysts (she has 3 of them) have gotten smaller and her brain has grown into the spaces. There is no need to shunt them and they don't seem to be causing any problems at all. That being said, she will still have them but hopefully they will not hinder her develpment.

The doctor doesn't think they had anything to do with her seizures. He thinks whatever the underlying cause of her brain malformations caused the cysts, the seizures, and the developmental delays. We just don't know what that cause is. We are still waiting for the 2nd round of genetic testing results. There are many possibilities that Nora could fit into, but nothing that matches her symptoms 100% so it is hard to pinpoint anything.

Anyway, no more MRI's for a long time unless there is a problem. Yeah!!!!

Thanks for checking in!
Lori

Saturday, February 16, 2008

MRI etc.

Nora had an MRI, Baer hearing test and an endoscopy yesterday. It all went well, just long. She had to be put under anesthesia and was having her enoscopy, so couldn't eat anything from 5 pm on Thurs. and no liquids after 8 am on Fri. And our appt. was at 12:30 pm on Friday. SO needless to say, Nora was a hungry, thirsty girl by 2:00 when they finally came to bring her to the OR room. She was a trooper. She only cried for a bit then took a nap on my lap for an hour then we roamed the halls until it was time. Good girl.

So her hearing is normal, which we knew already but had to have medical confirmation. Her stomach and intestines looked normal so they don't think it is Silliac or any other allergy that is causing her diarrhea. We'll know for sure from the biopsy. It most likely is "Toddler Diarrhea Syndrome". Yeah right. Apparently she'll grow out of it by the time she's 4. Great. And we won't know the results from her MRI until Wed. when I meet with the nuerosurgeon.

Overall, it went well. She came out of the anesthsia fine and ate a good dinner and had a good night's sleep. So, hopefully no more doctor's visits for a while.

Thanks for checking in.
Lori

Thursday, February 7, 2008

Big Girl

Happy Birthday Nora!

Mim finally got here after many cancelled flights thru Chicago. Alex gets home (hopefully) tonight and we'll celebrate Nora's 2nd bday on Sat.

She's going to bring cupcakes to school and then we'll have playgroup here after school. Fun day for the big girl.

Lori

Tuesday, February 5, 2008

Only 2 more days...

Nora will be 2 years old on Thursday. Wow. Time flies when you are at doctor's appointments, early intervention classes, speech therapy, doctor's appointments..... She is such a big girl. I am so thankful that she is where she is today. If I look back a year ago, she wasn't walking, making eye contact, or smiling that much. Now she is climbing on everything, falling a lot too, getting into every door, cabinet, drawer and crevice she can find. She copies sounds, can clap, likes to giggle, CRIES WHEN I LEAVE. That is HUGE. She has never ever ever had any seperation anxiety or stranger fears. I was so happy when she acutally cried when I left. I kept waving at her and she cried even more. I was jumping for joy. It means she actually knows who I am and gives a shit that I am leaving her. I am bawling as I write this because it is such a big deal to me.

I have been very emotional lately. It must be that time of the month. I also have been trying to figure out where Emma will go to school next year for kindergarten. Sounds easy huh? well it's not. The Seattle school district let's parents choose the schools you want to go to. We can tour the schools, meet the teachers, and then decide 1st choice, 2nd etc. This is torture for me. Having actually been a kindergarten teacher myself, you would think it would be a piece of cake but it is not at all. The Seattle school district does not have the best track record and I am panicking on picking out the school best for Emma. And she will only have turned 5 in Aug. so she'll be the youngest kid in the class.... Alex is traveling this week so I am going to have to make the decision for us. Grrr... I am not good with decisions.

My mom was supposed to fly in yesterday but her flight go cancelled and now she won't be here until tonight. That means 2 days from her trip were wasted. Emma was so excited and I had to burst her bubble twice. So hopefully she'll get out of Chicago today and be here when Emma wakes up tomorrow.

Thanks for checking in
Lori

Friday, February 1, 2008

Bad blogger

I am such a bad blogger. It's already February (and Alex's bday today).

Nora is doing well. She is almost all the way up to her highest dose of Lamictal, about 1 more week, and she'll be off Zonegran in 2 weeks. So far, no changes, good or bad. She turns 2 in a week(the 7th). What a crazy year it has been. She is such a different little person than she was a year ago. Even 3 months ago. She is changing everyday and is doing so many new things. She is still very delayed in speech but hopefully we'll see some communcation in the next year. She is busy as ever, 4 days of school, Speech Therapy on Tues., very busy always. She will be having her party next Sat. on the 9th.

Mim is coming to visit on Monday so she'll be here for the party. Alex has been in Vegas since Mon. and gets back late tonight. He then goes to VT for 4 days on Mon. So it will be nice to have Mim here to help.

Emma had some crazy rash all over her body a few weeks ago. It got pretty itchy and was really bad on her scalp. It went away after a week and 1/2 but then her scalp started peeling and flaking. Eww. Crazy dandruff girl. Well last night while I was combing her hair after her bath, her hair was coming out. Not a whole handful but enough to get me worried. She'll be seeing the doctor tomorrow.

So- hopefully I'll write more this month. Thanks for stopping in.

Lori

Friday, January 18, 2008

Doctors, doctors and more doctors

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

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

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