Wednesday, March 23, 2011

Finally some relief

After basically a week of people (mostly Olivia) being sick in the house, I think we are officially getting back to normal. She had, they think, a stomach virus, but days after other symptoms left was still having some fevers. She has been a few days without, so we're hoping that means its over. We're getting closer to normal anyway, because Livi is, as I type, supposed to be sleeping after a long day and a very short afternoon nap. Yet, what do we find? A little girl playing stealthily in her crib as to not draw attention. These are from today courtesy of Aunt Mal who is visiting at the end of her spring break. We are so happy to have her here!

Brian and I also had a great night last night. We, for the first time, were able to attend a CCVI parent group. The topic-local resources- is timely since we are surely losing our medicaid as her secondary insurance in two weeks...unless, of course, there happens to be some inexplicable reason to regain it as what happened last year. We can always hope. At the very least Children's Mercy financial aid kicks in and pays for the rest of everything there--meds, therapy, hospitalization, etc... Amazing, isn't it? All we would be stuck with is what is left over after our primary pays on her oxygen and food and monthly supplies delivered to the house AND medications and services from St. Louis Children's. I will also be knocking on their financial aid's door soon begging.

I digress, so we had such a good night last night because we met some great families with kiddos just like Olivia. One mother actually had a son about 6 months older than her with the same general conditions rolling around in a Kid Kart in the same exact color! They met in the hall and exchanged waves before we left. We love our friends and the support that you all are, but it is something different to see someone whose family looks just like yours. We hope to be running into them again soon. Also, during the meeting Olivia played with the teachers and other kids in childcare. We have NEVER left Olivia with anyone but a handful of trained babysitters. Yet, these people were totally qualified and made us feel so at ease. What a blessing both Children's Mercy and CCVI are to us. We can only hope to one day say an appropriate "thank you". Speaking of, visit the last post if you haven't so you can either run in the Trolley Run with us or donate in Olivia's name.


  1. Awesome pics, Aunt Mal! So glad that you can spend some valuable time with your sissy. Only 10 days until the big birthday, Livi girl!!! Gma and Gpa love you all!

  2. i love that you guys went to that meeting. you're right, it is good to be around other families where no explanations are needed.

    she is just the sweetest.

  3. Hi! You don't know me. A mutual friend suggested I check out a blog because we also have a baby with special needs. He had a large brain injury in the womb, and like you, we don't know why. He has CP and started having seizures at 5 months. He also can't hold his trunk straight, has visual deficits, and is developmentally delayed. I just wanted to reach out to you guys, and let you know that you aren't alone, and also thank you for your blog. I can't tell you how helpful it is to know that there are others in the same boat. Prayers for you and your family!

  4. Jessica,
    It is good to hear from you. If you ever need anything let me know. Feel free to email me at (Gotta keep the maiden name. Just too much trouble to change it after 5 years.)