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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.