You gotta be fast in posting or else...

Hi all! I've realized that if I don't post the MINUTE something good happens with Kiera, that it will most definitely be upstaged by something not so good.

Good Stuff from Tuesday 6/19: Kiera was put on the home vent once again on Monday 6/18 and got to take her VERY FIRST trip OUTSIDE today (to Rachel's Courtyard, the 6th floor outdoor playground, the view from which is the freeway.) We stayed outside for about 30 minutes. She wasn't feeling very well and was less than smiley; however, she did seem a little curious about her surroundings, the EXTEME HEAT (95 degrees!), warm breeze, and enjoyed the ride in the stroller. She does NOT care for getting in and out of the car seat. I've posted some photos. The other 2 pics with the bow in her hair are from Father's Day. She LOVES Mylar balloons!

Not so good stuff from today, Wednesday 6/20: Apparently Kiera's bout of "not feeling very well" yesterday turned into a pretty serious pneumonia for which she is being treated today by antibiotics and has been put back on the hospital ventilator. She had a fever in upwards of 104 and experienced some febrial seizures which they followed with an EEG. We will have to see where this illness takes us. We may still be able to get her home by the end of July. Say your prayers.

Jerry and I have ventilator training tomorrow at the medical supply rental company. We are getting pretty deft at handling Kiera's advanced medical needs.

Love,

Therese

Some Leaps and Delays...

Well, Kiera has had a bumpy week. Last Tuesday, June 5th, she was put on the LTV and lasted till Thursday when she got very sick and had to go back on the hospital vent and underwent a 5 day course of steroids and antibiotics. It was doubly dissappointing because we had expected to take her outside for the first time to Rachel's Courtyard, the outdoor playground on the pediatric floor, and arrived at the hospital for her outdoor trip to find her very sick. That was the rough part of the week.

Along with her really bad week, she has had one of her best weeks developmentally! She has been ALL SMILES! Plus, she has been playing peek-a-boo ON PURPOSE! You really have to see it! She turns her head to the side to look away from me while I say, "Where's Kiera?" Then she looks back at me really fast and laughs when I say "There she is!" It is SOOOO CUTE! She is also finally reaching for her mobile after 8 months of just looking at it. She plays with her toys more actively, kicks more, and has been passing her keys from hand to hand. She is also getting better at sucking her paci and keeping it in her mouth by herself. She has really made great strides! She turned 10 months Tuesday (7 months adjusted age).

This last week has set her back on her discharge date, however. We are still looking at July but later in the month. I am still hoping for her party to be on track for August 4th for those of you out of towners who'd like to come. More soon!

Love,
Therese

Some missed updates...

Hi, sorry I haven't posted in a few weeks. The end of school with the kids and life in general have just been running me through the wringer. I guess I failed to mention after the "Date" posting that Kiera only lasted one day on the home vent and was put back on the hospital vent. There was some disagreement between the docs as to whether it was her vent or her drugs, but Kiera had 6 of her heart spells in one day on the day they tried her on the LTV so they took her off. They sent the LTV (home vent) to get a tune up in San Diego in case the problem was with the equipment itself bringing their LTV count from 2 to 1. We are supposedly still on track for July 9th. We are waiting for another child to be discharged this week so he will give up the 1 LTV that he is using and give Kiera a try again. Noteably, she has only had 2 significant spells on May 15th while on the hospital vent, and she stopped the drug in question on May 17th and has had no more big spells (ie. that required bagging).

She is on half n half, breast milk and neocate formula, until we run out of frozen breast milk in the next few weeks. She's 15lbs 3oz now and hanging tough. As long as we get her home by July 9th, I am considering having a homecoming/baptism/early 1st birthday party all in one on either Saturday July 21 or Saturday Aug 4th. I will be consulting some out of town family members to see which is better for them before I schedule it. Keep praying that we stay on track and get her home in July! By the way, Kiera received some beautiful red mylar balloons from my friend Kim yesterday, and she LOVES them. She had a balloon once before and reacted the same. She's our balloon girl.

Love,
Therese

as always, this blog is brought to you by Great American Steakhouse... enjoy the power of meat!