#TeamNora

#TeamNora

Documenting Nora’s experiences with Infantile Spasms. You can get updates to this site via email by visiting http://tinyletter.com/teamnora

harris.clay@gmail.com

One Year Ago

April 16th, 2016 by Clay

It’s been one year since Nora was admitted to UNC for what we thought could be, and turned out to be, infantile spasms. Since those first very scary days in the hospital, Nora’s had one heck of a year.

One Year Old

February 1st, 2016 by Clay

A few weeks ago, Nora celebrated her first birthday. And it’s been quite a year.

Nora is 8 months old!

September 18th, 2015 by Clay

Nora is 8 months old! She’s been seizure-free for nearly five months.

Home, Seizure Free

July 15th, 2015 by Clay

Our visit to the hospital last week was uneventful. Nora was on video EEG for nearly 24 hours and did some of the movements and sounds that had us worried. They were not seizures. Just a baby doing funny baby stuff. As Zoe would say, “phew".

Headed Back

July 7th, 2015 by Clay

Nora is headed back to the hospital tomorrow for an overnight Video EEG.

Father’s Day

June 21st, 2015 by Clay

Nora has been seizure-free for two months and one day. She’s taking her Topamax twice a day, Prevacid once per day, and generally does fairly well with those. Since our last update, she’s weaned off of the Leucovorin and B6 prescriptions, which were to help with neuro-transmission.

Wednesday, June 3

June 3rd, 2015 by Clay

Nora is still seizure-free. She’s completely off of the steroids and on her full dose of Topamax. She’s been sleeping through the night and back to a fairly regular napping schedule. Baths are fun again.

Thursday, Week 5

May 21st, 2015 by Clay

Friday, Week 5

May 15th, 2015 by Clay

Today is the eleventh day of Nora’s wean off of steroids. After we left the hospital, she was on 40mg/day for a week, then another week at 60mg, after which we had the good EEG that showed the hypsarrhythmia had resolved.

Friday, Week 4

May 8th, 2015 by Clay

It’s been three weeks since we went to the hospital with Nora. The next Monday, Jackie’s birthday, the neurologist came into Nora’s room and told us that the infantile spasms were symptomatic. Then he asked us to have a seat.

Monday, Week 3

May 4th, 2015 by Clay

The quick version:

Sunday, Week 3

May 3rd, 2015 by Clay

Nora had a few episodes over the weekend. They’re very slight and easy to miss. We’re paranoid and suspicious of every movement. She’s a baby. Is that a seizure? Or is she trying to fart? We’ll know soon.

Thursday, Week 2

April 30th, 2015 by Clay

Nora had a good day today. She may have had two episodes but they were so slight, we’re not 100% sure they were episodes. They probably were.

Wednesday, Week 2

April 29th, 2015 by Clay

Day 2 of the increased dosage on steroids; Nora had two episodes yesterday and two more today. She’s still really hungry almost all the time (we’re conservatively estimate she’s eating >50% more than before the steroids). She’s normally the most smiley in the morning, and she really enjoys being on the move: walks, car rides, anything that includes changing scenery!

Monday, Week 2

April 27th, 2015 by Clay

Nora had an episode yesterday afternoon and mid-morning today. As planned, her neuro team at UNC will be increasing her steroid dose 50% starting tomorrow. That will last for another week, and then we’ll start weaning her off of the steroids. If that doesn’t resolve her seizures, we’re start looking for another anti-epileptic medication while we wait for the results of the genetic testing.

Saturday

April 25th, 2015 by Clay

We didn’t see that Nora had any episodes today - we could have missed something, of course. Nora was a good bit more relaxed today, too, especially in the afternoon. We’ll take another, please.

One Week

April 24th, 2015 by Clay

One week ago we went into the ER with Nora. Since then, it feels like we’ve been punched in the face over and over again with tests, possibilities, medicine, and more tests. Tears and crankiness abound, and that’s just fine.

Thursday

April 23rd, 2015 by Clay

Another good day for Nora. We only noticed one episode, and it was very subtle. It’s possible that we missed other episodes. Hard to tell.

Today was a good day!

April 22nd, 2015 by Clay

Today was a great day for Nora! She has now had five doses of her steroids since Monday night. Today, she had two episodes (12pm and 6:30pm). They were much milder than they have been previously, and only involved her eyes; no arm movement associated. She seemed to ‘recover’ more quickly and was less agitated afterwards. Her neurologists say that a successful result of the steroids is for the seizures to stop, not just a change in their severity or frequency. Even so, we’re happy to see less of them.

Home Again

April 21st, 2015 by Clay

That’s Nora during the ride home. Let’s talk about this picture:

The Beginning

April 20th, 2015 by Clay

Our first recap of this whole thing, working on talking about this without getting emotional, but I’m not there yet, so email is better.

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