Today’s PT session brought the return of the Walkable. We have been using the tilt table to get Abbie standing, but have not taken her walking in almost 2 months. This delay was mostly due to the diaper rash she had, which ended up being fungal. Thanks for all the good suggestions about treatments. We’ve found that grapefruit seed extract is doing a great job, and her skin is in beautiful condition now — ready to get back into the harness.
Since Abbie has been doing such a good job at tall kneeling, I felt we had a good shot at getting her knees to bend while walking. This is usually the toughest challenge for her. The first ten steps or so were pretty rough, with only slight bending in her knees. After that initial challenge though, she hit her stride, literally. She walked to the end of the hall and back in 15 minutes, which is definately a record for her. The secret is making her take big steps; the more distance we could get between her legs the more automatically her back knee would bend. It was really an “up” day for me at therapy today. I try not to ride the rollercoaster too much, but have learned it is OK to savor the good days.
Abbie was very vocal with Debbie this afternoon, and as Debbie put it, “She’s back to her teasing self again.” Lots of smiles, playing tricks and telling Debbie when to be quiet. She did terrific tonight in the bathtub moving her legs in and out to command. It’s wonderful to have something she can be so successful at; I like her to feel that way once in a while instead of everything being so difficult and just out of reach. If I take a step back and really assess how she’s doing, I get very excited…the Lord truly is “doing a new thing” in Abbie each day!
The Hope Project continues the birthing process, and recently I was trying to articulate what makes me, a woman with no PhD after her name and no specialized training, qualified to bring this into reality. The first answer is because I think, like the Blues Brothers, I am on a mission from God…this is part of His assignment for me right now, and whom He chooses, He equips. The second qualification is my double MA — not a Master’s of Arts, but rather “Mama” — I am a mom, and what true mother wouldn’t do anything in her power for her children? I found the answer that I am going to hang my hat on in 2 Corinthians 3:5 — “Not that we are adequate in ourselves to consider anything as coming from ourselves, but our adequacy is from God.”
For those interested, here is a brief overview of what we envision the Hope Project being:
“The Hope Project has multiple goals to support one mission: ensuring that each medically fragile child receives the best possible chance to reach his or her maximum potential.
(note: “medically fragile” defined as using technology to accomplish one or more functions normally done independently)
Goals which support our mission include:
Creating a holistic, multidisciplinary day program to provide fragile kids with the intensity, frequency and duration of intervention they need to progress. The program will utilize the best techniques and methods found internationally, including some that are on the leading edge of science and research.
Providing a training ground for current and future professionals who are or will be involved with this population. This includes: physicians, nurses, therapists, educators, social workers, case managers, program administrators, and legislators.
Empowering families. They are the child’s caregiver, advocate, therapist, and teacher. They are the only ones with a truly global perspective on their child’s case, and obviously have the most vested interest in success. They will be vital partners in each aspect of the Hope Project. We will also support families as they endeavor to create a healthy, loving, vibrant environment for the entire family.
Involving the community in projects, volunteer opportunities, and awareness, specifically focusing initially on the community of faith. Willing hearts and hands need only the invitation and training to become part of the Hope team. Community involvement will also help build bridges for the families to connect with a world from which they can sometimes become very isolated.
Becoming a research center nationally and internationally. As brain, motor, and cognitive research expands and pushes forward, we will be at the center of current pediatric research in collaboration with physicians and researchers from the United States and other countries.”
Please Pray for Hope!!!