Major Strides!

We upped Kiera's anti-seizure meds, so seizure activity seems stable. Kiera is feeling great and getting into everything. She is down to 1 to 1.5 liters of Oxygen during the day. She is signing a ton and trying to communicate. She seems hungry for knowledge. She requests that her diaper be changed, attempts teeth brushing a little, washes her hands, and actually tried eating about a dozen pea-sized bites of yogurt tonight. She is still VERY orally defensive, but I think she is very hungry. She probably needs her formula volume increased a little, but I am trying to take advantage of her clear desire for food and see if we have a window of opportunity here. She is learning all of the topics on her sign language videos and enjoys sitting on the potty (unfortunately AFTER the diaper is dirty for now). I think she is understanding our use of reason with her when it comes to these scary developmental steps. She is also playing better with other children. She is still very self entertained but occasionally allows other children into her world. Today we went to her cousins' birthday party. They had a HUGE jumper rented which Kiera went in for the first time. Another little girl said "hello" to her and Kiera said "hi." It comes out as an airy whisper when she says it, but it was clear to me. Things seem to be progressing exponentially. We are pretty excited to see what lies around the bend.

"Starting" to freak out a little...

Okay...I probably shouldn't blog this, but I can't get on facebook at work, and I need to have an on-line freak-out to get all my thoughts on "paper."

As I mentioned before, Kiera has had a two very long (30 minute) seizures that were clearly seizures, even to my "untrained" eye. She's been on anti-seizure meds since Decemeber, we've done the initial EEG, CAT scan, MRI, etc, and we are "patiently" waiting for a neurology seizure study that I think is scheduled for June. I was fine with waiting... until yesterday ...when I started to wonder about some of Kiera's other unusual activity and whether she has had other seizure activity that has been going unrealized.

Scenario: Last night she woke up from a nap. She had been sleeping on her arms in kind of a traditional napping pose. She was cranky at waking up. When I picked her up, her arms remained in the pose, folded hand over hand and elbow to the ear. She went back to "sleeping" and lying against my chest in this pose. When I would try to extricate her she was kind of like a magnet, wanting to lie against my chest and arms continuously in this position. She seemed aware at all times, but would cry if we tried to move her arms. She seemed cold and was shivering, although it's been cold in our house, and her eyes were very dilated, but it is also kind of dimly lit in the living room. There was some slight lip smcking, but not a lot, that I attributed to being thirsty or waking up. When I handed her off to daddy, the normal thing for her to do would have been to change sides for her arms, but although she was laying against him on her left side, her arms remained in the pose on her right side. Finally, I sat her up and was able to slowly massage her arm down or get it "unstuck." After this weird event, she fell back asleep and slept ALL night, having already been sleeping since before 6PM.

Now I am freaking out! Going back in my memory, I remember these frozen pose situations after naps at least 3 or 4 times. I started researching seizures on-line and found Tonic Seizures that seem to describe some of what was happening. Another person's description mentions her son raising his arms over his head and grimacing. ACK! Now I am going through all the times she raised her arms over her head upset about unison sound that would make her cry like she was in pain and re-evaluating the whole thing. What if the sound was triggering a seizure which would make her arms stiffen like that, and the crying was BECAUSE of the arm stiffening (not the sound sensitivity that we had assumed) and wanting to bring her arms down but not being able to? How many times has she done this raised arm thing? Oh...50... 100? I haven't counted. What if her developmental delays are being enhanced by seizure activity? What do we do now?

Big sigh. I have a call into the neurologist and am waiting to hear back from her so we can discuss this. Maybe they can move up her appointment. This is so weird. 4 1/2 years of medical drama, and NOW I'm freaking out. Does anyone out there in blogosphere have seizure experience that they might offer?

Kiera is so sick right now...

Keep Kiera in your prayers so we can stay out of the hospital. Both she and I have been unable to permanently shake this nasty respiratory stuff that we caught on Christmas Day. I realize I haven't posted much, but life has been pretty non-stop miserable. I finally feel better today than I have in over a month (even with the chronic coughing and nose blowing), so I hope there is light at the end of the tunnel for her. She started running fevers and vomiting Friday after we thought we were finally getting over the last cold. It seems like she's getting tag teamed by different viruses. I've got her on round the clock fever meds and had to bump her nebs back to every 3 hours in hopes of clearing her out so we don't have to admit her and risk her catching something else in the hospital.

Our extreme weather yesterday probably didn't help. It reminds me of that big storm back in 2007 the day of Kiera's tracheostomy surgery. I think there is 2 feet of snow in my back yard. Too bad Kiera isn't well enough to enjoy it. It will be nice one day when she is well enough to do something simple like sledding down our driveway. Here's to hoping for that day to come soon. In the meantime, I've got a sick kid to hold. Gotta go.

Baking Christmas Cookies with Mommy

Kiera often seems so young since she is a bit different socially than other 4 year olds and signs instead of speaking. It's easy to keep thinking of her as a baby. However, today she seemed so "little girlish." I was baking Christmas cookies and started with a batch of ginger snaps. I rolled them into balls and rolled them in the sugar and then showed Kiera how to smash them with the bottom of a plastic baby bottle. I only had to show her once, and she immediately took the bottle and repeated the skill on all the other cookies. A few times she turned the bottle over and used the open end which cut the cookies. I think she actually did that on purpose because it amused her. I think she did a pretty good job...don't you? I had to do very little repair. Most cookies were baked as smashed by Kiera.

River of Lights Trip

Our Rio Grande Botanical Gardens does a wonderful Holiday display of lights. We took Kiera before it got too cold. (It was still cold enough). She loved the lights although she hadn't had a nap and fell hard on the cement while walking. She had to stay in the stroller after that. Overall a fun trip.

Belated Pics from Pumpkin Patch Trip in October

McCall's Pumpkin Patch in Moriarty, NM. Not the best view. We had to take a pass on the hay ride to go pick a pumpkin just because of health care issues and not wanting to be stuck out in a pumpkin patch with a respiratory emergency. Maybe next year.




It was a little colder than we had expected because of the wind so we kept Kiera on the vent instead of an HME and O2. Kiera LOVES wind in her face.
The Corn Kernel Bin (in place of a sand box) was the neatest discovery. This was Kiera's favorite part of the trip. (Mine too)
Fascinated by the bales of hay.
Oh...and one of Kiera's favorite things to touch...TIRES. She grabs the tires everytime we unload her from the car.


Hello chickens. There were a lot of neat animals exhibits with a petting zoo, goat pen where they did some tricks, and a little bunny rabbit village. Kiera mostly liked the fencing, tires, and rocks.

Second non fever related Seizure

Not much to say except last night Kiera had her second seizure without a fever to trigger it. From the two she has had, there are a few patterns. She has had them about 10 minutes after falling asleep. Both days seemed to be days that she was particularly sensitive to auditory stimuli, crying at the sound of her story reader. She had an ear infection when we went in for the October seizure. She has just gotten over a cold this week. Maybe we need to take her in and see if she has another ear infection? She seems fine though. The most striking similarity between the two events is that both days I had just finished explaining to a family member (first Jer's sister and this time my mother) that taking Kiera on vacations still seems a bit unrealistic. Hmmm...God likes to help me re-enforce that position.

Everything went okay. We successfully administered the rectal valium, and she came out of it about 10 minutes after meds were administered. The weird thing is that I was holding her while she was sleeping and didn't notice the seizure right away. My guess is that it lasted about 20-25 minutes, but she may have been seizing 5-10 minutes before we detected it. I heard her lips smacking but couldn't see her face the way I was holding her and thought she was sleep sucking a paci. Then I felt drool on my arm and still thought she was just really soundly asleep and drooling. When I went to put her down to go wipe my arm off, I finally realized she was mid-seizure. It didn't seem quite as severe as the last one. She wasn't as stiff or single point fixated, but it certainly was nerve wracking and left me with seizure dreams all night. I keep worrying that maybe she has had them in the middle of the night without bei
ng detected. We will still have to call neuro and see where we go from here.