Tuesday, July 29, 2008

Kiera getting into trouble...

Kiera pulled up to stand to get to her books! She knows exactly which ones she wants me to read 3 times in a row. Note: Little Mermaid in her hand. Her other fav is Miss Spider's Tea Party.

Pulled up to crawl into picnic table...

...to get to Elmo book. It has buttons that talk. :)

Wearing a tutu (that I picked up free at a garage sale) while watching Sesame Street episode in which Zoe wishes all the characters would wear tutus and dance ballet. She totally connected that she was wearing the same thing as the characters.

Finger painting with cornstarch paint...just in case she decided to eat some. The apron was one we still had from the boys.

Kiera is VERY BUSY. She is getting more mobile and is quite forceful about making us read to her. I think I had to read 5 books last night, 3 or 4 times each. She grabs the book...then grabs my hand and puts the book in my hand...then grabs the other hand to make me turn pages. It is such a crack up. She even grabs my finger to make me scan words. Once she's had her fill of one book, she puts it back and grabs another. She keeps digging through the books to get to Little Mermaid, her favorite. She also kisses Ariel and Eric when we get to the "Kiss the Girl" page. She likes to kiss baby faces in her books. I think she started signing "love" by crossing her arms over her chest. Of course, her barrel chest, vent tubing, and short arms make it look particularly cute...more like an "I dream of Jeannie" pose. I think today we will finally have to drop her mattress from infant height since she's pulling up now. She had me nervous last night that she'd pull up and over the edge.

Saturday, July 26, 2008

Just one thing after the other...

So we were just getting Kiera back up to speed since an accidental dumping of water from her vent down her airway when her ventilator started malfunctioning yesterday. After bagging her a few times and giving extra nebulizers, I noticed while I was bagging her that the ventilator wasn't delivering breaths like it should. There were no alarms to this fact, and her stupid SAT probe had been reading 94% when she was clearly about 72%. Our only clue was her awful color and the fit she was throwing. I'm glad that we sleep in the same room with her since it would be difficult to sense this kind of distress over a baby monitor. So we are down to one ventilator until they can get us another one. With the big recall already in process on these vents, it will be interesting to see how long this takes. We had previously been informed that our specific serial numbers were not included in the recall; however, the events yesterday seem to be the same as the events that have cause other vents to be recalled. Hmmm....

Kiera's new trick: she is a born director. She likes to grab adult hands and use them as tools to do what she wants - hold blocks steady to snap together; make me hold books, turn pages, and scan the words with my finger while reading; use my arm to reach and grab toys. It's difficult to describe well, but it's hilarious and she's very determined. She's quite accomplished at sitting now and is moving on to short crawls and trying to stand with support.

I guess that's all that's new.


Saturday, July 12, 2008

One more month till Kiera's 2!

Wow! I can't believe it's almost been 2 years! It's weird because we feel like we still have a baby seeing as Kiera just learned to sit up last week! Then I see other people who had babies later who are further along, and I feel like we were frozen in time. One woman I know works at the hospital. She was pregnant and due when Kiera was 7 months old, and, of course, took her baby home while we were still admitted. We saw her a few weeks ago when Kiera was readmitted and she was pregnant again and pretty far along. I think for Kiera's birthday we will just have the family party on the 9th. I considered having a party with other kids, but I think it will be more fun for Kiera when she is on the same level with the kids at her party.

Today is a sad day. It is our last day of business for our family restaurant of 14 years. There is so much to do, and it has been such a big part of our lives. On top of the sadness is hope that we are on to a better future.

One thing I just realized is that I have only had to suction Kiera maybe 3 or 4 times ALL DAY! Wow! Last Wednesday I think I was suctioning her 3 times an hour! Or was that the week we admitted her? Anyway, aside from occasional sojourns into 4 hour neb land when things get icky, she is doing okay on 6 hour nebs. We started that Symbicort last Wednesday instead of Q-var and I am attributing all this improvement to the new inhaler! Yeah Symbicort!


Tuesday, July 8, 2008

Big Developments for Kiera!!!!

WOW! Finally, at almost 23 months old, Kiera figured out how to sit up from a hands and knees position without any other props like the boppy or her toys! She did it for the first time last night, and we all (me, Jer, and her nurse Sarah) clapped and cheered for her, so she started clapping, too. She was so proud of herself, and today she showed off her new skill a few times. She also stood (after I placed her in position) and supported herself with her hands on the Lil Tikes picnic table and played with her doll house on the table for a few minutes! But wait...there's more! She's been mouthing the word, "hi," for quite some time, but she started mouthing other "words" actively in context and while watching her reflection in the mirror. If only I could read lips. :) She also seems like she's trying to get sound past her trach cuff. I'll have to see what her pulmo thinks about trying a speech valve once in a while. The cutest thing she does is push Daddy and Mommy's faces together to make us kiss. She smiles and is very pleased with herself. She also kisses her baby dolls and "bonks foreheads" with them like we do with her...kind of a love sign. When we read books she turns the page and then looks up at me till I finish reading. She used to just turn, turn, and keep turning, but now she clearly understands that the page controls what I say.

What a nice week we've been having!


Saturday, July 5, 2008


Likes the walker on cement. :)

Interesting comparative note regarding her development: She is almost 2 yrs younger than her older cousin but actually a little over 6 months older than her boy cousin in the picture. Even her adjusted age makes her more than 3 months older. Of course, her cousin "Vinny" on the left may be older or younger than she... I'm not sure.

Watching the fountains.

Crying fountains after the noisy one finished.

Well, we dodged a bullet on the 2nd and almost had to readmit Kiera, but we did 3 hr nebs for 48 hours and managed to keep her INDEPENDENT and at home! :) She's doing much better today.

SOOO...we got to celebrate her 2nd Fourth of July, but her first INDEPENDENT one at home! Yeah! AND..the cute outfit I found at a garage sale LAST summer in hopes of it fitting this year does, indeed, fit thanks to a decrease in her calories and her GI bug in June. :) We decided to do fireworks at home so she could watch from the garage rather than take her to the big city displays where we would be far from our car and unable to control smokers and others around her.

She enjoyed playing with her cousins and being in her walker in the garage, and she liked the QUIET fireworks, but once some started making loud noises, she kind of hit her sensory overload limit, so I took her inside before the show was finished. It's not surprising since usually around 9:30 PM she starts needing lights dimmed and the TV volume turned down anyway. She has been kind of programmed that way after her first year and 1/2 in the hospital.

The pic with daddy and peek-a-boo video at the top right of the blog home page is from the 4th last year in the hospital. She was at a peak then right before we ended up putting her back in a sedative coma and things started drifting downhill toward our trip to Houston. It's amazing how far she and we have come. Even though we had been through the worst in Feb 2007, we were still in an innocent time of thinking she'd be home before her 1st birthday.

It feels like lifetimes since then, and we still have such a long road ahead before she is not so fragile. Last week my nurse quit, and Tuesday Kiera had a sudden turn and needed bagging 6 times throughout the day just to remind me that she REALLY needs qualified nursing. Thankfully, I was home and not the nurse who quit, because I had planned to lunch with a friend and would have been away when it happened, and I'm not sure the nurse could've handled it. Of course, all of this happened the week I had decided that I might have to take a teaching job for the school year. Without more consistent QUALIFIED nursing, that will not be possible. Those of you with jobs who have the option of leaving your child at a day care or with a family member while you work or with a sitter so you can have a date night should be grateful. It is disturbing when you discover you really are the only one who can take care of your child. After 14 years of business, our family owned restaurant is closing soon. We will be making a new start, but it will take months of government beauracy before we can do that. Be on the lookout for our new found INDEPENDENCE, and keep us in your prayers that we can manage in the meantime and that everything happens in a timely fashion.