Climbing Wall,,,

Wax on...

Wax off....


I swear Kiera climbed up there herself. She also likes to stand on the bench and support herself by leaning her legs against the table. Who knew TV watching was so aerobic? (Except those aerobic instructors who make videos...oh yeah...those. B*$#%@s. ) Anyway, Kiera is pushing her boundaries, avoiding nap time, walking all over with her walker, etc. I think she'll be walking soon enough...maybe by her third birthday. Hopefully she will delay a little in attempting to climb out of the pack 'n play or crib.

Father's Day and Family Time

Mostly this post is just pictures from Father's Day and our brief visit from our California clan.It's been a fun week. Kiera got sick 2 Mondays ago and has completed a round the clock Ibuprofen and Tylenol for fevers, 7day steroid, 7day Tamaflu, 10 day inhaled Colistin, and 2 hours nebulizers treatment plan. We had taken her to church for the handicapped mass (about 20 people) where she licked a pew(I think it's spelled pough but that looked weird...bench) but I have a hard time believing she got sick that fast, less than 24 hours later. Who knows...gotta keep going forward. Anyway she is much better now. She really was quite well by Saturday prior to Father's Day and was back to 6 hour nebs at that point, so that is why we felt we could venture out to the botanical gardens and butterfly pavilion for Father's Day. So enjoy the pics and my witty captions.




"Cuddling" with Aunt Angela


Kiera meets her cousin (once removed...ie cousin's baby) Jocelyn for the first time. She is tickeled. She just LOVES babies.



"Oh...you have a paci too? Here...let me suck that for you."


"Mirror, mirror, on the door...mmm...this tastes good."


"Grandpa, you crack me up."



Daddy likes to toss Kiera around and make her laugh.

Kiera brings Jocelyn to the dark side. Both are entranced with Blue's Clues.



Hanging with her brothers.

Trying to get a cousins photo at the Botanical Gardens, but Uncle Matt's hat is calling to her.


Kiera loves watching the butterflies.


"I can walk myself." Kiera walked a good way at the botanical gardens, while holding my hand for support. She wants to be like all the other kids.

Pics of Kiera using her walker

Kiera is enjoying her walker lately. She really has the hang of it and has been a pistol to keep up with. This isn't the best photo cuz the TV caught her attention, but you get the idea.



Of course, my job is to follow closely with the ventilator when she gets moving.



We took Independence Kobe Burgers to Ronald McDonald House for their board meeting yesterday, and Kiera enjoyed sitting on the Ronald statue's lap...



And driving in the pink corvette in the play area. She really had fun. Even though we were guests for 5 weeks in 2007, this was her first time in a house. They have such a nice facility here and are our favorite charity.

Feeding Therapy, Bob.

My sister, Katherine, will get the title. (Maybe Matt)

So Kiera was cracking me up tonight. (as usual) I had a fruit and veggie tray out for my sales meeting. (Well...if you can call it that...some grapes, snap peas, baby carrots, and a container of ranch dressing leftover from Dion's pizza night.) She is the model of a feeding therapy session for a curious almost 3 yr old with a food aversion. She came over to the coffee table (when I really would have rather had her play in the next room with her brothers so I could work) and stuck her fingers in the dressing...didn't lick it, but rubbed it on the recently polished coffee table. After performing this experiment a few times, she moved on to the grapes which she successively threw one by one across the room. They bounced very well. Since my carpet was freshly vacuumed yesterday, I felt confident to eat them rather than put them back on the plate for my guests. Then she tried feeding me grapes (very fast...like before I could finish one she was jamming the next in my mouth). Then I signed "all done" and told her "no, thank you." She thought about this, and then proceeded to lick a few grapes herself one by one before chucking them across the room. She similarly moved on to snap peas, fed me a few, and actually dipped one in the ranch dressing as I had done, and licked the dressing...which she decided she disliked and...

chucked it.

It was quite a scene, particularly since I, at no time, became distraught or angry, and was actually quite pleased with her PROGRESS. I am sure my guest thought I was a lunatic. (actually she understands)

Kiera also made a breakthrough today which I mentioned before. She seems to consistently like drinking water from the little arrowhead bottles with fluoride with the twist up tops. My theory is that she likes the texture of the twist top and likes the control of being able to bit the lid while drinking. Of course, she is not "supposed" to be drinking water, but it's in small amounts and low flow, so I am just going to pretend I live in Houston and never heard of fistulas. This is the only thing she likes, and darn it, I like seeing her drink SOMETHING. Plus, since she won't let us brush her teeth, it should be good for her.

She's also been walking TONS today, and trying to stand on her own more. Maybe seeing all the kids at the zoo Sunday inspired her. She always seems to want to do more after spending time around other children. She doesn't really have to interact with them. She just takes it all in for later use. We did "walk" her out from the duck pond to the flamingos which was quite a distance. Jer pushed the stroller while I held Kiera's hands.

CUTEST thing this week (I know it's only Tuesday) was last night. I went to the restaurant while Jer watched Kiera. She had refused to nap yesterday afternoon so she was pretty tired. She has taken to enjoying lying on an adult pillow on the floor that has a Little Mermaid pillow case on it (that I think I bought in 1991 when the movie was still new). She knows it is hers. Anyway, the pillow was on the couch and when she got tired she half climbed up the couch to reach the pillow, pull it off onto the floor, and plopped down on it and went to sleep. She was done and put herself to bed. What a good girl.

She must have gotten the memo that she will be 3 in 2 months and that it is time for her to eat, stand, walk, and go to bed on her own.

Kiera is currently in the process of tearing apart my entire living and family rooms. All of my mail is on the floor along with all of her books. She is licking a floor lamp and banging it's plastic shade against the wall. (earlier she was hugging the piano leg). Uh oh...now she's eating the mail...gotta go.

What Kiera does while I draw up morning meds

So I was busily drawing up Kiera's morning medicines at our wet bar/ oxygen bar with my back turned to Kiera as she was watching Blue's Clues. As many of you know, (especially my friend Bern) I like to re-use containers, and I have saved a few of these plastic Sherbet containers for storing blocks, scissors, crayons, etc. This particular container is used for Kiera's alphabet blocks. When I started with the meds, Kiera seemed to be playing with the blocks. When I turned around this was what I saw:



I was cracking up. She is (of course) staring at the TV, but she would routinely turn toward the glass door of the fireplace and pose for her reflection or pat her hat like so:



Kiera's fashon sense dictates that the bucket be worn askew. Clearly this is the most flattering and eye catching way to wear a Sherbet container/Hat.

Kiera is doing great and weaning again!

Today was a very nice day, although Kiera was a busy bee. We had a great pulmo appt today and cut her ventilator rate to 12 and pressure support to 17, so she is now at approximately the same settings as before her illness in March except with a higher pressure support of 17 from the then 14. She will have a follow up in 4 weeks, and we'll see if we can get down to a rate of 10. We're getting closer to CPAP trials and weaning from the vent all the time.

Please love on your kids this month (and always). I keep seeing bad and worse news daily involving parents abusing children and worse, and it makes me so sad. People continuously throw away what my husband and I work so hard to hold on to. I wish more of the good stories would make the news so the world wouldn't seem like such a bereft place.

Field Medicine

Kiera, the boys, and I trekked out to try a new park (new to us) today that has a mini-jungle gym for toddlers. I "cameled up" and carried the ventilator, SAT monitor and O2 tank onto the equipment while holding Kiera's hand and letting her walk. Kiera was having fun exploring the new surroundings. It all went pretty well (aside from the massage I'll need to recover from carrying the equipment) until Kiera stepped on her g-tube extender and popped her g-tube out while on the jungle gym. I had to DROP everything (literally the ventilator, o2 tank, and SAT monitor) to dig out a syringe (which I keep taped to the ventilator) to put the g-tube back in while on the play equipment. Talk about field medicine!

The cutest thing was while we were picnicing. The wind had kicked up a bit, and Kiera seems to REALLY LOVE the wind. She gets this estatic grin on her face and leans her head back to take it all in. It is quite the sight. She has also started an amusing habit when I give her snap peas (while I am eating them). She takes one, licks it, drops it, takes another, licks it, drops it...repeat. This can go on indefinitely. It's pretty funny. She also enjoys feeding me grapes...which makes one wonder if the origin of that tradition wasn't really a royalty thing but more a food aversion on the part of the grape feeders? :) Of course, I humored her and ate them.

P.S.- I have no idea what's going on with my fonts or spacing on this post. I guess I'll just have to deal with it.