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Hi All.

We are home. It has taken me a long time to get back to the blog, and for that- I apologize. There hasn't been  a whole lot of time around here lately! But tonight, I am trying to keep my eyes open and this seems like a good way to meet that goal.

WE FINALLY BROUGHT SLOANE HOME! Sloane obviously has some complex medical needs, and while Eric and I extensively trained at the hospital, we have to be able to get some relief sometimes with the type of care Sloane requires around the clock. Many facilities make you have 24/7 nursing care before a release date can be set by the
hospital. Colorado is not one of these states, but they definitely want to make sure you will be successful once you are out of a hospital setting.  It quickly became apparent to me that with the nursing shortage in Denver, we wouldn't be getting 24/7 care at home anytime soon. We decided to make the executive decision to bring her home without full coverage shortly after hearing that a child down the hall from us, in the Pulmonary wing, had been waiting 14 months to have full staff on for him. NO THANKS. Things actually went rather quickly after deciding this; Eric and I took every class that was suggested or required and passed our tests with flying colors, and were approved to take her home.  I felt like I was pretty obnoxious with our nursing agency about getting nursing in our home, BUT- we are home now, and we have three days a week currently and we have a night nurse starting in June. Yay!


Sloane is doing excellent at home. Our first night, we went on a walk, and while she didn't tolerate it great, we are amping her tolerance levels up slowly and she's doing great now. She has scared us multiple times already... we have been home two weeks and we have had blood coming out of the trach site... green mucous at the trach site... a fever...and she pulled out her g tube last weekend. Just to show you a semblance of our lfie so far.  I think our baby likes to keep us on her toes. Everything she's thrown at us we have been able to handle so far, but her tenacity and propensity for keeping things lively is not lost on me.

Right now, I am busy with appointments multiple times a week. To give you guys a taste of what we are working with, these are the doctors I regularly meet with:

PEDIATRICIAN
AUDIOLOGY
OPTOMETRY
NUTRITION
OCCUPATIONAL THERAPY
SPEECH THERAPY
PHYSICAL THERAPY
ENT
CRANIOFACIAL CLINIC
PULMONARY CLINIC
MICROTIA CLINIC
PLASTIC SURGERY
SIGN LANGUAGE

Oh, did you read down that list and notice we don't have just a regular therapist? For me? Yeah, I probably need one. BUT AIN'T NOBODY GOT TIME FOR THAT.

Currently: the biggest hurdle we are fighting is getting enough sleep. Eric and I have been both attempting to get 5 hours a piece. Ou current schedule:

5:45 AM: Eric goes to work
5:40 AM: Tiffany wakes up, begins Sloane's routine.
7 AM Aiden wakes up
(DAY ACTIVITIES- we are limited by what the nurses feel like doing; I am limited in my ability to eascpae on the days when i am alone, because Sloane legally can't be in the backseat by herself.
5 PM: nightly cares
6 PM: Dinner as a family
8PM Eric and Aiden in bed; Sloane sleeping
8PM-2:00 AM Tiffany pulls shift with the baby
2:00 AM-5:45/6 Eric is with Sloane/ Tiffany is sleeping

THEN WE BEGIN AGAIN.

My life is currently a little bit like ground hog day. It just keeps going- with the same randomness- no matter how motivated I am to have change. Today we went for a long walk with our nurse and while it was so nice... now I am sore and a little more tired, so I am skeptical this was a good choice?

Other updates for our little family:

Sloane is growing well now, and she just hit 8 lbs.

We got to meet a WONDERFUL  mom- Justine- and her daughter, Quinn- the most beautiful little girl- who has Treacher Collins Syndrome. I don't think she will ever understand the hope and grace she gave us by meeting up with us. They met up with us the night that Quinn was officially de-cannulated. Quinn exemplified every hope we have for Sloane: she was spunky, full of life, beautiful, and unique. I LOVED watching Aiden play with her, and it just made me KNOW that someday, we will be able to move past 100,000 fears and just let Sloane be Sloane. It really calmed me to, to see Aiden so loving and accepting around someone different than himself. In the car on the way home, he said, "Mom, Quinn had little ears like our baby." I said, "yes- she did. Did  you notice anything else about Quinn?" He thought for a minute and said, "Well, she didn't say any words but she was much tougher than me. I think she could probably beat me up even though she was smaller than me." I just laughed and laughed. With what these kids have to get through at such a young age, they are given the power to fight! I really believe that.

Aiden turned 4! And had his birthday wish come true of having a big party at his own house!

Aiden graduated from 3-year-old preschool, and will beginning school in the fall at Ms. Rhonda's...which  he and I are both stoked about.

Mom and Sis are still with us; and we are grateful for them everyday. It is hard to believe that they have lived with us almost 8 months now. It's harder to believe that my dad has been gone for 6 months tomorrow.

Thanks for following. We are just really learning how to live again. Literally for the last 14 months, my family has been surviving in emergency mode. We will learn to live again, and we are taking the first steps in that direction. It's taking us time to understand our own limitations, strengths, and weaknesses.

Thank you for your positive thoughts, continual prayers, and the hope you give us every day!