Ashley's Story

She will leave fingerprints all over your heart

1/30/2009

Procrastination

So...I should have been prepared by now. Packed and ready. Loaded and waiting. Except for the fact that I have put all of this off until now. The day we are supposed to be leaving. Maybe it has a little something to do with the fact that the girls have been sick and so has Dave's mom and I have been waiting to see if everyone regained enough health to actually make this overnight trip happen or not.

Maybe it has to do with the fact that I don't like leaving Ashley Kate behind. I mean there are very few MOMENTS or MINUTES in her 3 years that I haven't been with her so knowing that I am on my way out of town for an overnight trip is a little overwhelming to me. Dave and Blake are going to be in charge of taking care of her and although I KNOW they will do a great job I'm still nervous about not being with her. I desperately need to get over this, but life is really, really unpredictable in Ash's world and spending more than 24 hours more than 2 hours away make me crazy. She's still on IV antibiotics every 8 hours and breathing treatments every 6. When you factor those new developments into her feedings, her TPN, her med schedule and poop journaling its an awful lot to keep track of. Especially if your not used to doing it all by yourself. Someday I plan on taking you guys through a pictorial of what it takes to "tuck in a gherkin." I've been planning it for a while, but to be completely honest by the time I 'm actually doing it I'm just too tired to take pictures. Anyway, life sure was a lot simpler last summer when all we did was make formula and give FK each night.

I'm getting sidetracked. I really am excited about this weekend. Its a girls weekend for Al. It was part of one of her Christmas gifts. We are on our way to Dallas to stay the night in a hotel with one of her cousins. Then tomorrow we have reservations in the Galleria at the American Girl store for lunch. Both of the girls received gift certificates for Christmas and they have been looking forward to this weekend ever since. Allie loves her doll she received last year on her 10th birthday. She loves doing her hair and changing her clothes. Its one of the last "little girl" pieces I can find in her. Some of her friends think its a baby thing and then she has a few friends who enjoy the whole American Doll experience as much as she does. I kind of love those few friends. They make me smile. When she comes home and tells me stories about how they don't care who makes fun of them for playing with their dolls it makes my heart smile. Character. Self Confidence. Individuality. Leadership. I see all of those things in her eyes as she shares the stories.

Allie did make it to school yesterday. Her face looks really, really good. Still dry and patchy in some areas, but you can't tell unless your right up on her. Her main issue at this time is her hands. The tops of them have sores on them and thats embarrassing. The insides of her palms have blisters underneath the surface of the skin and they are SO itchy. She claws at them and that makes them burn and sting. Homework last night included lots and lots of tears because holding her pencil is making her crazy. We struggled through an hour of makeup work and it was about all she could take. This weekend will attempt to finish it all as we travel and then again on Sunday. Her arms are really yucky looking because she claws them while she is sleeping. She wakes up every morning bleeding and has lots of sores from the poison ivy. She wears a sweatshirt every day so no one will be able to see them. Other than those few issues she is back to her normal self.

Ash is still working her way back from the pneumonia. Like I said still taking antibiotics and breathing treatments. She is coughing much less and has had two successful nights sleeping in a lying down position without vomiting. Thats progress! She has no fevers and other than a rattle in her little chest and runny nose looks to be getting better. She's dumping but that's no surprise. Still on TPN. Again not surprising to Dave and I. Its been a LONG road back for her bowel and we aren't anywhere near healed. She has gotten to 65 mls on her feeding with the goal being 80 without dumping. I don't see any increases coming in the near future. The important thing to our hearts in this whole process is that she is home. Allowed to do her slow healing in her own crib and not a hospitals. That makes this much more tolerable.

So I find myself continuing to procrastinate the actual preparation for this trip. My posts continues to ramble on and on and if I have noticed that I'm doing just that then I'm sure you have too. Sorry. I've got to have the house ready for the guys for the weekend and our bags packed and ready to leave by 3pm. This isn't accomplishing any of that. Guess I'd better get started. Have a great weekend. Trish

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