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!