Wednesday, February 25, 2015
Allie and Andrew have been sharing a room for about 4 months now and things are going better than anticipated.
I was worried that Andrew's nighttime wake-ups would take a toll on Allie but, most of the time, she doesn't even stir. If he's being particularly fussy, we bring him downstairs to sleep in the portable crib. (And to be clear, when I say "we" I almost always mean Jonathan. We partitioned the nights for Andrew care and I only got Wednesday and Friday. Jonathan's the best.)
There have been a couple nights when Allie woke up in the middle of the night, thought it was morning, and woke Andrew up. We were less than impressed. In hopes of curbing that, we got her a light-up kids clock that changes colors at certain times. We have it set so that it turns yellow at 6am, meaning she can play quietly in her room, and then green at 7am when she can do whatever she wants. However, the first night she had it she woke up every couple hours and alerted us that it hadn't changed colors yet. Backfire.
He goes to bed about a half hour before she does so he's usually asleep by the time she comes in. This is crucial because they like to hang out if they're both awake (see the video monitor photo above). But they're mostly pleasant even when they're both awake. She talks to him and does all sorts of entertaining things. He adores her and she likes him too, as long as he's not breaking her train tracks or chewing on the train cars---both of which happen very often.
I don't know what I expected exactly but sharing a room has been a non-issue.
Sunday, February 22, 2015
The kids have had a busy week.
Monday was Presidents Day and the kids and I were out of school and work, respectively, but Jonathan was in the office. In an effort to keep them entertained I took them downtown to the Smithsonian's National Gallery of Art and the Natural History Museum. It was a success unlike I ever would have imagined.
Allie got to choose which museum we went to first and she picked the art gallery. She ran around marveling at the everything and describing all the pieces. She insisted that we turn Andrew (who was mostly sleeping) towards the art so he wouldn't miss anything.
She had two rules at the museum: no touching and no running. Both were hard to follow.
|"Mommy, look! I'm not bumping it with my elbow."|
After about an hour of art, we went across the street to the Natural History Museum. After not being able to touch any art, she went berzerk and touched everything.
She used Righty without any prompting.
It was a fun day.
We woke up on Tuesday to a lot of snow so, of course, we went stomping around in it. We walked down the street to our friends' house and played with their toys for a couple hours. Allie loves walking in the snow and Andrew loves being strapped to me in the carrier. He's a snuggler.
|"Want to cuddle?"|
On Wednesday, Allie had her 4-year checkup with her pediatrician. She was a maniac. She kept running out of the office and making the loop around all the exam rooms. She would pop in and say hi to any other kid she saw. The pediatrician and the nurses were glad to see it because they all remember the uncertainty that came with Allie's diagnosis. Whenever Allie goes into the office they all gawk over how well she's doing.
Here are her current stats:
Height: 39" (34th percentile)
Weight: 34 lbs 6 oz (45th percentile)
She also got two shots and handled them pretty well.
On Thursday, Allie and Andrew's Uncle Blake was in town for a game. It was too late at night so they didn't get to go but they were there in spirit.
On Friday, Jonathan met me at my office for an afternoon date. We just hung out and ran some errands but it was nice to see him during the daylight. We then picked up the kids early and braced for the weekend snowstorm.
We got about 8" of snow on Saturday and only left the house to shovel. Jonathan and Allie are a mighty shoveling team. Today was warm so we went for a long snow-stomping walk and it felt a little like Spring might be coming back someday... hopefully soon.
Saturday, February 14, 2015
Allie's birthday was on Wednesday and our big girl is now four. My, how much she's grown. (See her first, second---day and party---and third birthdays here.)
On her real birthday, she brought cake to school and came home for our classic Allie birthday dinner of mac and cheese and ice cream.
Today, we had a Valentine's Day themed painting party with about 40 of Allie's closest friends. It was a great time.
Her absolute favorite part was blowing out her candles.
Andrew loved having a house full of kids and he happily made the rounds with all the parents.
Happy birthday to our wonderful girl.
Friday, February 6, 2015
Wednesday, February 4, 2015
Now that Andrew is mobile, Jonathan and I are beefing up our baby proofing and realizing how little we had to do before.
Allie, however, is facing a bigger challenge: learning to share her prized toys.
There is a lot of shouting happening these days:
"Annnnddrreeewwww! That's MINE!"
"Mommy! He's chewing on my stuff!"
"That's for big girls... NOT YOU!!!"
And some transparent ploys to remove him from reach of her toys:
"Andrew pushed me and needs a timeout."
"He's tired and needs to go to his crib now."
Monday, February 2, 2015
Jonathan took her to the test today all by himself. She had to be "sleep deprived" going into it so she got to extend her bedtime by 2.5 hours last night and stay up until 10pm. Of course this meant that by the time 10 o'clock rolled around, she was as hyper as she could possibly be. She was bouncing off the walls. Since she and Andrew share a room, he woke up while we were trying to convince her to get and stay in bed. He then surprised us by standing up in his crib for the first time.
We were taking photos and awing him but Allie was a little envious of the attention. She then decided to show us how she could stand on her bed too... and jump... while singing. It was like a circus. We finally just left the two standing chatting children to fend for themselves and we went to bed. Allie kept yelling "Mommy!!!! Andrew isn't laying down!!!" Without the audience, they went to sleep pretty quickly.
Allie had to get up early so I swooped her into bed with us. She enjoys telling us how bad our morning breath is. "Your breath smells like compost!" she says while dramatically plugging her nose. She's yet to realize that she's not exactly a bed of roses herself.
I took Andrew to school and I went to work while Allie and Jonathan went to the appointment. I soon got the following picture and text from Jonathan:
"She got in as soon as we arrived and she farted so loud I swear she [pooped] her pants!!
Everyone heard it."
She looks rather proud of herself, doesn't she?
The neurologist had smartly booked two back-to-back EEG slots for Allie in case she had some trouble settling down. They really want to see her brainwaves while she's sleeping but getting an almost 4 year old to sleep on command is easier said than done. An hour and a half into her hour long EEG, I got a text from Jonathan saying that she just fell asleep with the help of some Benadryl and the technician was finally able to get the leads on her head. That must have been a long hour and a half.
Once the test was over, they woke Allie up and she and Jonathan headed home. The poor girl has been sleeping most of the day since then. I had no idea Benadryl would knock her out so much.
We were told that it could take up to a week to get the results, but we got an email from the neurologist within a couple hours. Here's what she said:
"[The results are] showing some seizure risk which is not surprising and may remain abnormal because of the MCA stroke. The purpose of getting the EEG was to assess the seizure risk and it is mild-moderate and not significant. If she does not have clinical seizures or indirect evidence of having subtle seizures (delay, stop making progress, etc.), we will continue to observe her and sit tight."
So, after much stress, we will keep Allie's medication dosage the same and continue to hope for the best.
I'm still trying to figure out how I feel about the whole thing. Of course knowing what's going on in her brain is better than not knowing, but having to actively think about seizures and seizure risk again has brought back a lot of unsettling emotions. It's so unfair that she has to go through this. It is scary to think that she could start having seizures again. How did we get so lucky to find a medication that works for her, doesn't have any noticeably side effects, and she doesn't mind taking twice a day? It's this weird combination of feeling so lucky that we don't have to deal with seizures right now and having so much fear about them coming back.
For now, we'll just count our blessings that she's doing so well.