I'm especially looking forward to seeing what happens with health care changes. Granted, not much can be done right now when we are incurring a billion dollars a day in costs for a war that we should never have been involved in, and when we are spending trillions to bail out banks and mortgage companies with failed policies. But - once we have dealt with some of the unfinished business (can I call it dirty laundry?) - I look forward to seeing what will happen.
As a parent of a child with moderate to significant needs, a chill goes down my back when I think about where I would be if it were not for the outstanding medical coverage my employer offers. I don't have co-payments for medical visits, medication or specialists. Those three ER trips a few weeks back? No co-payment. The visit by the on-call doctor at 3am last month? No charge. I am so thankful, and aware of it at this Thanksgiving time, of what a blessing I have in my employment and medical benefits. And for all of the parents who have children with similar or more impacted children with needs, I will pray for them this thanksgiving - and be truly thankful for what I have.
Gwenn is now two months in with the PEG feeding tube, and will go in for surgery to remove it next month and have a mic-key button placed in it's place. That should make all of us happier. However, she is on her fourth round of antibiotics, and frankly I'm hoping that this ongoing infection is gone prior to the surgery - I don't want it delayed.
We have also made progress with the doctors, although not what I would like. We met with Dr. H, a geneticist who is helping us try to solve the mystery of Gwenn. Agreeing that there are far too many things going on for it not to have a common cause, they are going to help us. Initially they will look into metabolic, genetic and chromosomal deficiencies in hopes of finding something. I continue to go through a fairly complete list of 800+ genetic and metabolic disorders one by one in hopes of finding something, probably obscure, that sounds like what we deal with - and could allow us to finally identify the little demon we fight.
Thankfully Gwenn's sisters are amazingly patient with her. As she has recently changed medication, that patience has been called on. Ella is amazing, and has really stepped up. Lucy plugs along with everything, although I have to work hard to ensure that she does not try to emulate those habits of Gwenn's which we are trying to neutralize. She is such a little parrot, that while it helps with speech and motor skills, the social skills may be slipping a bit.
I've found that I have been lacking for time recently, and I'm hoping that I will get some back to spend doing some much needed game playing, cuddling and reading with the girls over the weekend. I'll also be in touch with some friends who have been in my thoughts recently.
To Lorna - you are an amazing woman. You deal with so much more than I could ever imagine, and never run out of patience or a sense of humor. You are my "patient mom" role model. Many of my friends know Lorna, and dealing with a child with a terminal illness (without a timeline) is a stressful piece of work - and yet Lorna not only maximizes every day, she still understands that despite a frightening diagnosis that there is so much life to live, and that doctors are often wrong. Know that we here in Seattle are constantly praying for all of you, and that Gwenn tells me that she too "hates mito"...
To my friend S - who I will leave anonymous for now. You are a pillar of strength. You are a fantastic parent, and will continue to be a fantstic parent as a single parent. I'm here when you need me.
So many others to be thankful for - D&H, Sandy & Jim, Sundie, Sharon, Libby, Karin, my mom and so many more. While I don't get time to think about it while I'm running myself ragged, I really do have it so good. Thanks for all you all do for support...
That's it from me for tonight. Remember on the eve of Thanksgiving during these turbulent times, that we need to focus on what we do have and the many blessing that we do have. One of my favorite songs that the Hopeful Gospel Quartet sings is the song "Count Your Blessings" - which goes something like this:
Count your blessings, name them one by one,
Count your blessings, see what God has done.
Count your blessings, name them one by one,
And it will suprise you what God has done....
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