Kiera Playing Ball with Mitch

Kiera loves the physical humor of other people, namely her family members, getting "bonked" on the head with a ball or ballon. She was laughing so much at Mitch. She loves watching her brothers tool around the house and enjoys the family interaction. She's able to hold a sitting position indefinitely now, although she still needs one of us to place her in that position to begin with.

Kiera's respiratory situation seems better than last month. I don't want to exaggerate. She still has "veklhempt" moments and needs bagging every now and then, but she is doing well overall, I think. We're still on 4 hour Nebulizers We have done her last two trach changes in the doctor's office and have been signed off to do them at home again. She is on 3 liters of O2 - approximately what she initially came home on. She is still on steroid therapy since Feb 26th and will be weaned off by March 31st, so she is VERY puffy from water retention which is a side effect of the steroids. It should come down has she comes off the drug, so don't get used to her crazy chubby cheeks. No... we are not overfeeding her.

I will be adding a post from our Zoo trip today shortly after this one. I downloaded my camera data all at once, so there is lots to report.

Have a Happy Easter!

Love,

Therese

Just a little visit to the hospital... Happy Birthday, Mommy!

So Kiera was readmitted on the 3rd, my birthday. She was having trouble keeping her Sats up even on 12liters of O2 so we loaded her up with the nurse and drove her down to Pres. She lucked out and got her princess suite with a view again, which was nice for familiarity for her. She came home again yesterday after having a little surgery on Tuesday to dilate her trach stoma site, scope her, and change he trach tube back to a water cuffed bivona. We had been having trouble getting he trach in during her trach changes because of granuloma tissue around the stoma. I was a little nervous about going back to the bivona since it was the type she had before we ended up on the road to Houston. However, she seems to be doing much better since the surgery and change. I think she may have been overcompensating for a ledge of scar tissue that was intruding on the other trach. She is now back down to 3 liters on her O2 and quite playful. She's doing much better at maintaining a sitting position once placed that way, even without the boppy pillow for support. She'll do her next trach change in the hospital to be safe. Right now she's still recovering with a lot f blood tinged secretions, but, in general, seems really good and happy to be home. The plus side...two nights of uninterrupted sleep for mommy after a month of getting up every 2 to 3 1/2 hours. And...we went to a movie! :)

Love,
Therese

Kiera's Baptism/Welcome Home Celebration...

Sorry about the sideways pic. I'll try to rotate it later.

Everything went so well yesterday. The weather was perfect, sunny, window opening weather (even while today it snowed and was windy). I've been waiting for this day for so long. The only hitch was having her wonderful godmother get sick so she couldn't come, but she was there in our hearts the whole time.

It felt like finalization to the 18 month delay in getting Kiera home. It felt so good to actually celebrate her birth and homecoming and actually have her well and interactive. She got to play with her cousins who have previously only seen her when she was sick or asleep. There has at least been an underlying feeling of unrest ever since her birth for the last 18 months, especially every time I had to attend a family function without Kiera. I felt like I was in limbo waiting for closure. She was always missing. Anyway, it is much more peaceful now, even with all the meds and alarms and bagging emergencies and a straight month of getting up every 3 1/2 hours to run nebulizers. I still don't have to plan every day around a hospital visit.

She outgrew her baptismal gown in October, so we made due with what she had. I felt good about getting her to the church on time. We had to bath her and do trach care the night before, and run 8 am nebs, 9 am nebs, and deliver all her meds before leaving. Getting ourselves ready and all her equipment loaded and unloaded to be at the church by 11am was tricky, but we managed quite well. During Kiera's ceremony Monsignor Olona held out his hand to bless Kiera, and Kiera mirrored his movement and reached back toward his hand. It was so cute. She was so tuned in to everything going on. She looked at Monsignor every time her said her name. It was kind of neat since most infants are oblivious to the proceedings of a baptism since they're so little, but I guess a plus to having been forced to wait so long is that Kiera is old enough to participate.

Enjoy the pictures. Thank you to everyone who could come. I know so many more would have liked to have come if we hadn't been keeping it small to reduce germ exposure. Believe me, I was thinking of everyone who helped get her here and what it took to do so during the whole ceremony.

Love,

Therese

Kiera Rose's Big Adventure

Today we flew the coop! Kiera finally got to go outside ... not at the hospital, and not doctor appointment related! Yeah! We had a wonderful little family outing to the park today. There was a nice window where the weather was beautiful, not cold, not windy, etc. so we pimped Kiera's ride and took a stroll. Kiera rode in her stroller like a queen purveying all that is hers. She looked so important. :) She's been into kicking a lot more lately, and she kept kicking the foot rest on the stroller as if to command, "Giddy Up, Daddy!" She just needs some spurs. She wasn't big on the sun in her eyes, although she seemed to enjoy it even in the discomfort it caused because it was different.

The park is set up so conveniently for our needs. There is a padded walkway to the baby swing and one to the slide so we can wheel the stroller with the equipment up to it without having to get on the sand. Who'd have thunk that that would be so important for a special needs baby? Kiera LOVED the swing! She laughed and watched another little girl swing near her. It was so much fun to finally do something NORMAL. I can't help but remember that this time last year Kiera was in a coma with a 30% chance of survival. Just look at her now! God apparently never took a statistics class. :)

Of course, when we returned home, we bathed her and did her regular Sunday trach change so we feel like we were as careful as we could be about germs without being hypochondriacs. Besides, the swings are in the sun all day which kills most bacteria. Enjoy the pics. I can't wait till it's warmer, and we can take her to the zoo!

Love,

Therese

Be our Valentine!

Kiss, Kiss Daddy!


Practice your princess wave, Kiera.


Argh!!!

Bath Time and Trach care

Kiera fine tunes her pirate face with her "peeps" during her "field trip" back to the hospital at the end of January.

Kiera and I had a busy morning getting her bathed, trach care done, meds delivered etc. so we could get her dressed for her Valentine (Daddy). I am posting "pirate face" pics from today and from 2 weeks ago in the hospital. She is starting to do the face on command so it is easier to catch on film. She has a few games that we play that she has begun to initiate. When she wants to play "Where's Kiera" she pushes on your cheek to push your face away. When she sits up on your lap and then flings her head back into your shoulder she wants to play "Forwards,Backwards." She also likes to exchange pirate faces and makes the face to get us to play with her and make them back. During her baths this week she has been sitting up and playing more, and seems to enjoy bathtime. We have been a bit short on nursing this week, (shorter than usual) so Jer and I are exhausted, especially with her Neb schedule being every 4 hours. All in all, we are doing pretty well.

I have planned a Baptism for Kiera on March 1st to complete her sacrament. We had her baptized emergently in the hospital last February when she was in her coma with just Jer and I and the priest, so this is really just to have the formal ceremony, and a chance to celebrate her homecoming finally. It will just be family. I would love to invite everyone, but I still have to try to keep Kiera as sheltered as possible from exposure to viruses and whatnot, so I am limiting the people. Even with family that have said they are coming and her godparents, we are at 18, and I am nervous. :)

Have a great holiday! Hold your loved ones close.

Love,

Therese

Home Again, Home Again, Jiggity Jog...

Kiera is coming home today. I'm busy washing all her stuffed animals, bedding, etc, and disinfecting her crib and hard toys. I probably haven't done every single one, but I hope the effort keeps her from getting sick again. Some toys aren't machine washable. I put some in the machine anyway, and will have to try to surface clean a few that have music boxes and such inside that I don't want to ruin. (Hmmm...that word looks strange typed.) Anyway, here we go again. She'll be on daily antibiotic nebulizers, and is still on Albuterol every 4 hours and Mucomyst twice a day.

Gotta go to work and get some other things done before I go pick her up. Talk to you soon.

Love,
Tree

Kiera is So Funny!

Well, Kiera is definitely feeling better. She is back on the LTV at a rate of 28 and about 35% oxygen. She is still getting her albuterol nebulizers every 3 hours and mucomyst every 6 hours. Hopefully that will be weaned a bit before she comes home. Dr. Glasser wants to watch Kiera at least 24 hours after her steroids stop which will stop on Saturday, so we might be looking at Monday to come home.

Yesterday Kiera was cracking Jerry and I up! She has started making this face when she smiles that I think looks like a pirate. She squints her eyes, but mostly crinkles up the right side of her face which also enhances her dimples and shows her teeth. It's hilarious, and I think she knows it, because she keeps doing it when I laugh. I tried to catch it on my camera phone and got an okay pic of it, but the best ones came out blurry. I don't know how to download the phone pics, but I'll try to catch the elusive Kiera pirate on my digital camera today. I did have to wonder though, if this smile is genetic. I came home and looked at a pic we have of Jer Sr., and he seems to be squinting his right eye more than his left. Hmm...maybe Grandpa was a pirate in another life. :)

Later,
Tree