The Baker is Back

via Etsy

This morning I was up at 6:30 baking a cake. I've got two cake orders today, orders I took at the last minute because My Other Job has drawn to a close, and I need the work. I have a Blue Velvet Cake with Purple Frosting and a Luau Theme to make today and a Milk Chocolate Chocolate Cake tomorrow. I will, of course, post photos later.

If you know of anyone who needs to hire a baker, please let me know. I can also advocate for children with special healthcare needs, review grants, create caregiver manuals and train caregivers, write grants and pull my legs over my head.

Reader, what are you up to this weekend?

It takes a village.

This is Henry, holding Sophie's legs at the dentist. I'm sitting on a stool, torqued at an odd angle, holding down her hands and keeping her head straight so that the hygienist can clean her teeth.

Going to the dentist with Sophie ranks up there with going to the hospital  or dealing with a seizure in a public place as one of my very least favorite things to do. While Sophie doesn't mind having her mouth propped open or even the actual cleaning, she does struggle with the lying down part, and in order to do an effective job, the hygienist needs help keeping her head straight and her hands down. There's no adaptive chair at the dentist, and because I'm just so grateful that this particular dentist is incredibly sweet and good with her, treats her at all, actually (did you know that dental care for the disabled is something that is hard to find?) and works hard to not have to sedate her, I willingly bend my body into pretzel-like shapes to keep her in the chair and prevent her from folding her own legs up in her customary pretzel-like shape. This time I had Henry, though, who kneeled on the floor and kept one arm over her legs and played a video game all at the same time.


Am I lucky or what?

Alert to all my readers who have children with special healthcare needs

As if we didn't have enough on our plates, I received the following from a colleague and hope that you'll help to take action, inform others about this, blog about it, post it on FB, scream it out your apartment building window, down the farm road on which you live or through the telephone.

Today House Appropriations Committee Chairman Harold Rogers (R-KY) released initial details of a House proposal (available here) to revise the current continuing resolution (CR) that would fund federal government through the rest of the fiscal year.  The proposal includes a $210 million cut to the Title V Maternal & Child Health Block Grant and is expected to be voted on in the House early next week.  It is absolutely imperative that your Members of Congress hear from you today about how devastating this cut would be to the maternal and child health and children with special health care needs programs in your state.

AMCHP urges all members and friends to call your elected officials NOW with the following message:

·       I am calling in strong opposition to the proposed $210 million cut to the Title V MCH Block Grant included in the revised House continuing resolution. $210 million is a 32% cut to an effective, important, and vital program in our state.

·       Cuts this deep will devastate state and local programs serving women, babies, children, and children with special health care needs in our state.

·       This cut is counter-productive because health issues that we don’t prevent or detect early through this program now will ultimately cost us all more later.  For example, the average cost of a premature baby is $58,000 - it makes no sense to cut programs that work to prevent maternal and child health issues like prematurity that will save us money in the future.

·       Please tell (Your Representative’s/Senator’s name) that we should not balance the budget on the backs of babies and our nation’s most vulnerable.

Members of Congress need to hear from you today.  They listen to constituents and it is imperative they know how these cuts will impact mothers and children in their jurisdictions.  Therefore, in accordance with your organization’s advocacy rules, AMCHP urges you to contact your elected officials now.  AMCHP also asks that you share this email with all MCH advocates in your state and urge them to also contact their Members of Congress.

Your efforts to reach Members of Congress will be critical to preventing deep cuts to MCH programs in FY 2011. Please share any  feedback you receive with AMCHP staff about your contacts as this will be helpful as we continue our advocacy efforts  on your behalf.   For more information or to share feedback please contact Joshua Brown (jrbown@amchp.org) or Brent Ewig (bewig@amchp.org) via email or at (202) 775-0436. 

Need helping finding your Representative’s or Senator’s Phone Number?

To find your senators' and representatives' phone numbers, use this searchable online congressional directory or call the U.S. Capitol Switchboard at (202) 224-3121 and ask for your senators' and/or representative's office.  Ask to speak with the aide who handles health issues and leave a voice mail if you cannot reach them directly.   While the urgency of the situation requires immediate phone calls, you may want to follow-up with an email or fax to reiterate your point.  You can find email addresses and fax numbers at www.house.gov andwww.senate.gov.   First priority is to contact members of the House of Representatives as they will vote first, and we also urge you to call your state’s two Senators to share your views with them as well.

This is My Child

"I've had doctors, a couple of doctors, who have questioned a decision about doing something for Olivia, kind of on the basis of: Is she worth it? I've looked them in the eye and said, 'Don't you dare say that to me. Do you have children? What would you do for your child?' I think society can look at a person like Olivia and say, 'What can she contribute?'"

--Tamara Welter, mother to Olivia, aged 21

What does it mean to be human? 


What does it mean to be alive?


What does it mean to be productive or not?


Does it matter?


Above all, this is my child.

Read more and listen to this story -- it brings up just about everything that we parents of children with severe special healthcare needs face.