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).

Kiera had the most fun at the zoo today!

I just wanted to chime in quickly. We took Kiera to the zoo today, as we have done many times before, but today she really seemed a bit more engaged. Of course, her favorite thing to look at is the fencing and rocks rather than the animals. She has been watching her zoo signing video, so many things were more noticeable for her. She absolutely LOVED the seals and sea lions; although as my sister said, watching them is really not much different than watching TV. I signed seal and made barking sounds, and she laughed and laughed. The other new activity for her was the fountain park. I don't really know what to call it, but there is a grated platform with random water sprays that cycle. The observant parent of a trached child can direct said child so as not to stand directly over a spout. Kiera LOVED watching the other kids get soaked and play. We let her walk on the grating and get a little sprayed while being vigilant to not let her get water in her trach. She did very well. She clearly saw herself as one of the children and wanted to do what they were doing. It was wonderful! She signed that she had "fun." Definitely a do-again. We have a water park (small splash type) near us, and I may go check it out to see what she thinks.

Kiera's Birthday and New Trach

Kiera had a fabulous backyard sprinkler party with a Little Mermaid theme! She enjoyed getting hit by the sprinkler even. The kiddie was more for the other kids, but she seemed to enjoy the festivities. We have found a bubble spinner that she can actually make work without having to blow, so she loved playing with bubbles. Our entree for children consisted of butterfly shaped PB and J sandwiches. Adult got brats and dogs.

I am happy to add a princess castle cake to my repertoire of amateur cake decorating. I think it turned out very well.

Kiera tolerated the singing of Happy Birthday a little bit better but had to cry when we all clapped. She clearly looks concerned, but I swear, all we were doing was singing. :)

Yesterday, Kiera had her newest trach tube put in. This one is CUFFLESS. The old ones had an inflatable balloon to seal her airway which also made it more difficult to teach her to talk. Now I am HEARING her make noises even without her speech valve in! Hooray! It will still be a while before she talks, but she is definitely starting to vocalize some things like making sound when she wants our attention or a different video. I can't wait to see what she does. She vocalized "hat" the other day while signing "hat" during her signing video. She is also on CPAP (no vent rate) while awake and a low rate of 6 when sleeping. Barring illness, we should get to start trach collar trials September 1st! That is where she is only on oxygen assistance without the pressure support from the CPAP.

Of course, there is a small drawback with the trach collar trials. The nurses tell me that Kiera will be MORE able to get sick because of the "open system" of the trach collar as opposed to the "closed system" of the ventilator. What that means for friends, family, and visitors is even more diligence with hand washing, sanitizing, and flu shots. I hadn't thought about it since, in my mind, she would be more able to fight things off as she got older. Anyway, sorry, but I will have to be a germ-a-phobe once again this fall.

4th Brithday Swiftly Approaching!

Wow! 5 more days till Kiera is 4 yrs old! What a trip this has been. Kiera is currently on CPAP settings all day while awake, and a rate of 10 while sleeping. We are busily planning a Little Mermaid Party for her. She is signing more signs every day and did the cutest thing the other day when the new nurse asked her how to sign "family." Kiera grabbed the nurse's hands and made her do the sign for "family." It was actually one of the few things I have yet to see her do as a response to a request. She is such a little teacher. She is really enjoying her toddler bed and her ability to get OUT of bed when she should be IN bed. She is busy, busy, busy. Jer and I are both still job hunting. This will hopefully be the week since school starts the 18th. The backyard is looking fantastic! Jerry has made such a change back there. I can't wait to post party pics since we are having it in the backyard. I have been busy making various creations with the humble produce he has grown so far...peach cobblers, pies, crisps, zucchini bread. Jer has a jungle of basil and makes awesome pesto. All in all, life is pleasant at the moment.

Kiera's First Broadway Musical (in ABQ that is)

We ventured out last Sunday and took Kiera to see the Beauty and the Beast musical at our local performing arts venue. It was quite a logistic adventure with limited handicapped seating, of course only in the expensive seats. We opted for regular seats since there weren't 3 together in wheelchair, and Jer went to great lengths to get us aisle seats with the understanding that we could keep kiera's stroller with the vent and equipment on it in the aisle. However, upon arrival, the aisle was clearly too narrow for that with fire codes, so we ended up transferring her equipment to one seat and had her alternate laps to seat in which actually worked out quite well. We silenced alarms for the show so that she wouldn't alarm if she cried or laughed or yawned (always fun alarms). Since she's been feeling pretty well, we haven't had to suction much so we got away with suctioning only before the show, during intermission, and after. Honestly, I think her favorite part was the walk around the lobby during intermission. She did seem to enjoy the show since she absolutely adores Beauty and the Beast. It was a good FIRST show to take her too since she knows the whole movie and whole soundtrack. She has sensory issues with applause and cheering, so she did cover her ears and cry a bit during applause, but she recovered quickly since it would be followed by a song she liked. She also wasn't scared during scary parts since she knows the outcome already. She seemed a bit "concerned" during a wolf chase and when the beast gets injured, but you could tell that she knew things would be okay. Kiera probably would have done even better had I been successful at making her take a nap earlier in the day as I had tried. We had preferred a matinee, but hadn't been able to find acceptable seats during that show. Luckily, I did come prepared with pacifier in tow for coping with all the input. If only the trumpet had toned it down a bit...he was a little over the top. :) All in all, I really enjoyed being able to take her to the show. Her awed stare at the stage during the opening sequence was just priceless!

"HAPPY" Independence Day!

Kiera was leagues better with the sounds and festivities of Independence Day this year. She did pretty well last year, too. If you recall, 2 years ago she just cried and cried over the noise. She has been getting better with the choir at church, as well. For the louder fireworks she just covered her ears but there was no crying at our house this year. We have a great view of the whole city, so while we set off very tame fountains and such, we were able to enjoy all the illegal fireworks around town from our front porch without taking part in their purchase. :) They served as a great backdrop for our show. This bodes well for later this month. We bought tickets to see Beauty and the Beast (The Musical) at Popejoy since Kiera loves Beauty and the Beast so much. Hopefully, she will enjoy the songs so much that any noise from applause will be overlooked on her sensory board. :) It was quite a trick to try to get seats where we could park the stroller with all her medical equipment. The wheelchair seating would only allow us 2 seats, so we would have had to split up. I really felt like making a little stink over equal access, but Jerry managed to get us an aisle seat on the wing, so we'll make due and hope for the best. That's all for now. I've got some grading to do.

Back to CPAP trials...FINALLY!

Hey there! I have still been so, so busy! I agreed to teach both sessions of summer school which has consisted of 9.5 hour days and trying to cram 6 chapters of Algebra or geometry into 3 weeks of 4 hours a day classes. Little high school brains are exploding everywhere. Now the first session is over Tuesday, and the next one begins. The 4th of July holiday has provided a teensy break to try to catch up on important things like mopping the floor in my kitchen and breathing. :)
Kiera finally got to start her CPAP trial up last week and is doing GREAT! She is full of energy and very BUSY. I turned my back for just a bit about 30 minutes ago, and the following picture is evidence of her busy-ness.
I wonder how often the health care equipment companies get ventilators returned with purple crayon scribbles all over them? i haven't cleaned it yet cuz I think it's freakin' hilarious! Plus it gives her a personal touch, don't you think?

I will try to start planning Kiera's 4th birthday party soon. It should be the weekend following Aug 12th, but I haven't even glanced at a calendar yet. I am in a bit of denial over the fact that she will be 4!!! (It reminds me of the NICU nurse practitioner who said she thought a worst case estimate could be that Kiera could be trached till she's 5. I remember thinking it was a bit extreme, and now she probably needs a pay-off on that bet.) It will be a Little Mermaid themed party. I framed some Little Mermaid posters that I have had since the movie came out (20 years ago!). In fact, I think one was the free poster I got for going to see Little Mermaid on it's release date! :) They were kind of beaten up and rolled up in a box in the garage, but Hobby Lobby did a fantastic job of fusing them to a board and making them look like new. I pulled down some of her nursery decor and started transitioning her room to a "big girl" room. I found a great Disney princess toddler bedding set at Other Mothers (thrift store). Kiera loves seeing her favorite princesses on her sheets and pillow cases. I hung the posters last night, and it was so cute to see her gazing at them fondly this morning. She is such a doll.
She is learning lots and lots of sign language, but still only makes airy sounds at best verbally. Kiera is also more interested in exploring food finally. She likes crumbs! Her favorite food lately is parmesan cheese. She also enjoys breaking crumbs off graham crackers. She will also chew on a bottle nipple with about 10 cc's of juice or milk in it to get tastes. It certainly doesn't qualify as drinking by any means, but it does help distract her from her more destructive chewing.

Well, I guess that gets us up to date, and pretty much where we were ventilator-wise in October! C'est La Vie! Cross our fingers, say some prayers, and keep on chugging along toward that ventilator free day in the future.

Kiera is on the upswing lately (knocking on wood)

I know I have been a little lax in posting. Teaching middle school this year has been really keeping me more than busy (and very stressed) considering that I stand by my previous decision that middle schoolers should be locked up till they are 14. :) I have also become a teensy bit addicted to Facebook which has become the recipient of more of my photo posts. I do plan to continue the blog for health updates and some pics...don't worry. I just have to remember to log in. I am sure I will have more time once I get the 6th and 7th graders off my back.

Kiera seems to be on the upswing the last few weeks. She is climbing the walls (or at least the TV entertainment center). We finally came a little bit down on her pressure support, but are at least a few weeks away from trying CPAP again. It was getting warm out and finally motivating me to look forward to getting Kiera outside, and then we had a freeeezing cold snap that kept her away from her friends' birthday party Saturday, so I was a little disappointed since it is one of thew few parties she gets invited to.
I am really excited today. I signed Kiera up for a fun program that makes cross stitch quilts for children with medical problems. I did it a while back in 2008 or 2009, and actually forgot that I had submitted the entry. Then they contacted me a few weeks ago to let me know the quilt was finished and ask where to send it. It just arrived about an hour ago. Kiera is napping, so she hasn't even seen it yet, but it is GORGEOUS! I am overwhelmed. It is just more lovely than I could have imagined. She is going to LOVE it! Kiera has been obsessed with watching Aladdin lately. She still loves Beauty and the Beast and Little Mermaid. We also play the soundtracks of the same 3 faves up in her bedroom at night and she just bounces in her bed out of excitement. I kind of want to got over to her pack 'n play right now and wake her to see how she likes it. So instead, I am letting her sleep and posting a few pics.
Kiera is using more and more sign language lately. She loves watching Signing Time and is expanding her sign vocabulary by leaps and bounds. She can "sing" (sign) the whole "Silly Pizza Song" which is challenging for most adults. It is exciting to see her mimic signs and finally use them to communicate a little bit. I just ordered the audio cd's for some of the songs and a few more dvd's to help her add to her repertoire.

Wow! I missed March!

Sorry guys. This has been the most crazy time in our lives. After a year and a half of trying to launch our restaurant and having given it everything we had to give, we had to call it quits on March 15th and chalk it all up to bad timing. So, now we are in transition. Jer is job hunting for the first time in 16 years. I'm trying to stay sane teaching middle school and finish out the school year. Hopefully, Zane will be graduating high school in the spring. Mitch...we love Mitch. :) And Kiera is on her wellness roller coaster. She spent the last week pretty sick and finally seemed to turn a corner on Sunday, so hopefully the virus has passed, and without a hospital trip. Although, she has been on nebulizers every 3 hours 24/7, and I am pooped and in desperate need of night nursing relief and SLEEP. I was up at 3am and 5:45 having only gone to bed at 12:45 in the first place. There is not enough coffee to make me function today. We aren't, yet, back to her lower vent settings to try CPAP again, which is disappointing. But hopefully, now that it is getting warmer we will get past cold season and start getting closer to getting off the stupid ventilator. It's getting to the point where she weighs as much as the vent, and the trip up and down the stairs is tiring.

On the fun side, we added a new rescued silver standard poodle to our backyard brood. He was a mess, but after the groomer trip yesterday, he has cleaned up quite nicely. I am trying to change his name to "Pascal." He is 11 months old. Hopefully the name, "Charles," hasn't stuck too much yet. We'll see. I just can't call him Charles, and Pascal fits with my French mathematician theme. Descartes has gotten very good at controlling himself around Kiera. He purposely walks around the ventilator rather than between Kiera and the ventilator and, thus, over her circuit. He also seems very conscious of her needs when she starts having problems or the ventilator alarms. It's quite cool. Both dogs are really enjoying having eachother to play with.

Delayed Update...:)

I apologize again for any lag in updating. Life has been crazy as usual. My home nursing has had a few changes including some new nurses, some night coverage, and some uncovered days where Jer has to take a turn. Kiera came home Super Bowl Sunday, and is back to wearing us all out. We have a two week follow up with pulmo today and will change Kiera's new longer trach tube in his office since I am a little nervous about how changing this trach will differ from the last, if at all. We also see GI guy, so we'll get it all done at once. I took off from school for these appointments, although, frankly, after the day I had yesterday, I wouldn't have minded taking off without the excuse. I hope pulmo will make a few vent changes today and get us back on track for CPAP trials. Kiera has been making a lot of vocal sounds lately (mostly "Ahhhh" s). It's been sweet to hear.

Gotta go for now and start the packing process for the dr's office field trip. It will probably take an hour to an hour and a half to get me ready and get Kiera ready and all her supplies packed.

Kiera is chewing her way out of the hospital!

Well, we are officially getting discharged tomorrow. Yesterday, Kiera chewed through 3 suction ballards, her leads cable, the black lead, and her SAT monitor cable. She left the temp probe alone because she went through one of those on Thursday. She's also biting her nails since this last admission, incidentally. Can we say I have a stressed out little 3 year old who is done being sick?

So, I just finished cleaning the carpet in her play room (living room) where all the g-tube and feeding pump mishaps have routinely fed my carpeting. I cleaned it during her last admission, as well. It's actually a very convenient time since hospitalizations are the only block of time I have to enable the carpet to dry for 24 hours.

I have some new nurses starting this week since I lost one due to the hospitalization interferring with her paycheck, so I am excited to train new people. Plus, some of my great nurses who have been out with injuries the last few months, and well now and planning to start working for me again, so I will have some night coverage again. Kiera is also getting a new therapist this week who likes to use music and dance in her physical therapy, so I think she will have fun with that.

Other than that, it is a usual overbooked week. Restaurant business to run, Grades due, Kiera care, Mary Kay meeting, house to clean that has fallen apart, high schoolers to monitor, TAXES! Can't wait!

Bronchoscopy and Longer Trach Tube

Well, we had a lovely little look at Kiera's airway today and change her trach from her current 46 mm long one to her previous 60mm long trach (incidentally the trach she had before our Houston trip in 2007.) I have been a little twitchy about this change (much like Kiera's airway), but the tracheal collapse was quite clear on the bronch so the longer trach will help stint it open so to speak. It also bypasses Kiera's infamous* pig bronchus which may help in ventilation. I am not sure what this means for long term. We may get to finally go back to our cpap trials, although this may indicate a need for the trach longer term than just during ventilation. As always, we will wait and see. Kiera did seem much more comfortable tonight than she has been in a week and since we really haven't been off steroids for any significant amount of time since Thanksgiving, maybe we can finally accomplish that, too.

* That's "IN famous" for lovers of the movie "Three Amigos."

Sorry I haven't posted lately...and that hospitalization is the impetus.

Hey loyal blog followers. I apologize for the slacking in my posting lately. The holidays were so hectic combined with getting the first semester of teaching completed and grades posted. I didn't even feel like my 2 weeks off was much of a break when I was finished. I had probably the least amount of home nursing coverage over Christmas break than I have had in 2 years of being home with Kiera and very few nights, so I was exhausted by the time I had to go back to school. Then a very good friend lost her 29 yr old daughter around the 8th, and I went to be with her for the funeral. That was directly followed by me catching a nasty virus from the wee beasties I teach HmPV which is comparable to RSV. That was two weeks ago. I was sick for a week before giving it to Kiera and Jer, and Kiera is now in the PICU once again on the big ventilator. We admitted her last Saturday. I hope we can get her back up to snuff this week and get her home, though she is still on continuous albuterol nebs and steroids every 8hrs.

She is also very grumpy ('roid rage :) She really has a hard time being in the hospital these days, and it is so hard to leave her alone and miserable. Plus, since Jer has been sick and I am still coughing 2 weeks later, it is a little awkward visiting and trying not to get others sick. Getting a sub for my students is a hopeless task and really more work than just going to work, so I teach every day and go to the hospital at 3:30. Last night I was there till close to midnight. The night before I came home earlier around 7, but had to spend my evening till after midnight tutoring the 16yr old and getting him caught up on missing math homework so he would be ready for a test. I definitely feel pulled in ALL directions lately. I still need to get some office work done at the restaurant, but can't stand leaving Kiera alone at the hospital to go get it done.

Kiera is supposed to get a bronchoscopy once she is off continuous nebs. I think if I were to estimate, she may not come home till later in the week at best. I also lost my w-f nurse because she couldn't take the hit on her paycheck from Kiera's hospitalization so she took another patient. So in the midst of all of this I am also trying to find another nurse to cover those shifts so that Jer and I can get to work. The fun never ends. :)