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.

Something New in the Health Drama

Well...our week was eventful...certainly not boring. Last Tuesday seemed to be a normal day full of me reporting to multiple friends and family members as to the continuing improvement and amazing health Kiera has been having, especially with her full days spent on the HME with O2 tubing and only using the ventilator at night.

Sooo...since good old Murphy's Law seems to like my house, we had a NEW development. Tuesday night (Wed AM) at 12:03 Kiera started having a complex partial seizure with no fever! It lasted 30 minutes! While she has had 2 febrial (fever induced) seizures in the last 4 years, this is her first seizure with no apparent stimulus. She did, however, have an unnoticed ear infection which was diagnosed when we got to the hospital, and after the CT scan, spinal tap, EEG, and MRI, the ear infection seems to be the only possible cause of the seizure. The ambulance took over 15 minutes to arrive (which I think was due to dispatch mistakenly leaving out the urgency of "4yr old on a ventilator having a seizure." ) So maybe the duration would have been shorter if she had gotten the anti-seizure meds about 10 minutes earlier. I am a teensy bit perturbed about that. Even though she came home Thursday, we are still waiting on the prior-auth on her PRN anti-seizure med so we can get it filled. Worst case, we'll have to call 911 again if we don't have any.

The whole thing left us pretty wiped out. It felt like we were caught looking...like the last 4 years of drama was still a honeymoon period that we didn't know we were enjoying. Luckily, my sister was awake and monitoring Kiera when Kiera's seizure began so we had 911 on the phone within 2 minutes. I'm not really sure we would have noticed it as quickly (if at all) if we had been on duty and sleeping like we do when we don't having nursing coverage. I think we may have to start bringing in the poodles on non-nurse nights and see if they will alert us if something happens. Good thing I have smart dogs, despite some lady's know it all comment on my blog a while back. :)

See Anything Missing from this Picture?

Where's the big V? Kiera is up to two 4hour stretches a day on just oxygen connected to her passey muir valve on her trach! The backpack she is wearing is her feeding pump for the brief hour+ of her 3 daily feedings. Otherwise, she is pretty free to roam. I will probably need to finally child proof some things this weekend. :) The only trick is that the O2 tube can disconnect very easily so she needs to be very closely monitored while on the O2...even moreso than when she is on the vent which is, of course, all the time.

She is also increasing her signs exponentially! I found a Little People Zoo Set on craigslist and she adores the dolphin. She signs dolphin whenever she see it. It seems to be the first toy that she really identifies by it's name, other than baby or book, I guess. She learned the sign on her sign language videos and transferred the sign to the context of the toy effortlessly. Now she likes to rewind the Little Mermaid to dolphins scenes, and the playmat with the zoo makes dolphin sounds and says dolphin when you push the "d" button, which she does repeatedly. It is really exciting to see how much she is "speaking."

1st 30 minutes on a trach collar! No Vent!

Yesterday Kiera got to try her first 30 minutes off the vent! I will upload pictures later (as you see now is later). She maintained O2 SAT's of about 93 on 3 liters of O2 flow with the trach collar. The unfortunate thing is that the humidity machine that accompanies the trach collar is actually less portable than the vent with no internal battery and a short "leash." The trial worked out well while watching Blue's Clues or coloring. I have to ask our doc or RT if it is okay to get longer circuitry (tubes) to give her more mobility. I also need to see if there is other equipment they didn't send us like HME's to put on the passy muir valve sp she can walk around with just the HME and O2 tubing. This is an exciting first step(or 101st depending on your perspective) toward getting Kiera off her vent. She will be more exposed to getting sick because the O2 system is an open system rather than closed like the vent, so we will have to ask that visitors this winter have had flu shots and wash hands religiously (not just on Christmas and Easter).