One Big Adventure
An opportunity to log in some of the thoughts and activities of our homeschooling family of eight. We love books and good food and aspire to a Christ-centered, multi-generational, agrarian life.

Tuesday, March 6, 2007

Advocating, today's agenda and the folks at home

The last three or four days have pretty much been a time of waiting. Three of those days have been relatively easy. One thing I wanted to mention is how important it is for parents of children with special needs and/or serious illness to advocate for their children. By advocate I mean that we need to be aware of our children, their needs and their treatment so that we can speak for them and protect them from unnecessary things. Let me share an example:

In the few days since we have been here, I have quizzed every person who has come to visit James. I have shared with them as much as I can about him and our family, our concerns and our situation so that they know where we are coming from. They also know from the questions that I ask (nothing deep, I assure you), that I am genuinely concerned about and interested in my child's care and those that are providing that care. On two different occasions, I have had nurses come to say they needed additional blood for tests that needed to be redone or that the lab claimed was never received. Both times, I either witnessed the blood draw and asked the nurse what she was drawing the blood for, or I knew (from asking the nurse) that the results for those tests had been received. I refused the blood draw for James--a perfectly acceptable thing to do--and said that if the lab offered a better reason for needing more blood from James, I would be happy to cooperate. Both times, the nurse returned and said they 'found' the blood or the results and no blood was needed. Now, some would say 'what's the big deal'. I'll tell you. James is pretty small--at almost 27 months he weighs about 25 lbs, with steroids. Because of his leukemia and chemotherapy, his body is no longer making blood. When he needs blood, he gets a transfusion. The fewer interventions James needs during this time, the better. We'd rather focus on what he does need.

Now, I'm not encouraging parents to be obnoxious with their child's medical care providers just because they are the parents. I am advocating getting involved, knowing those working with your child, knowing what they are doing with your child and asking questions when things don't make sense. I have not always been comfortable with this role, but I can look back and see how the Lord has suited me to meet this very need for James. And I hope others will benefit. The medical folks working with James have always indicated that it thrills them to have parents get involved, to care, to learn, to express concerns and ask questions.

To the person, they tell me they wish more parents would do this. Everyone would benefit.

Today we are anticipating James getting his next chemo treatment. We're not sure exactly when, but it is a shot (or two) into his thigh muscles. He'll need to be monitored for a while after the injections.

At this point, our biggest challenge is boredom. Dr. Wiermaa and I talked about that yesterday and she ordered physical therapy and occupational therapy visits for James today. She said they would bring mat that can go on the floor for him to play on that we can pick up and keep clean, so he has a safe place to play.

I talked to the home folks this morning and packing is progressing along. There is much to be done. Many friends have brought meals and more folks are calling to schedule bringing food. Everyone is eating well and not having to prepare food has free Katie to work on sorting and packing. She and I have spent a good bit of time 'sorting by phone'. Vern told me that the cabin offered by friends for us to stay in after our house closes won't be usable because the septic tank and leech field are frozen. John and Jeanne, our realtor friends are looking for alternatives for us this morning.

Please pray:

1. For wisdom for James' doctors and staff and Mommy Advocate to help James get the best possible care and the best possible outcome from his treatment.

2. That James would respond well to today's chemo treatment and not have any side effects and that therapy would be a good and helpful thing for him.

3. For the folks at home: for good rest, that they would be able to accomplish much towards moving and yet not feel overwhelmed with the size of the task, that the little ones would play sweetly and be helpful to the big ones that are working.

4. That God would keep us all healthy and continue to protect James.

Back to James.. I hope to have more later today. Thanks for visiting... and especially for praying.

Love, Stephanie

1 comment:

Mom said...

Steph - Sorry to hear about the 'cabin' availability not working out and will pray earnestly that Jeanne & John can find something that will work as an alternative. Waiting to hear how James' chemo treatment went today - how he's doing. Still waiting for the MRI results.
Hope all's going well on the home front as well as there.

Love you- hugs for all
M/N