We are enjoying the summer thoroughly. I continue to be amazed at how productive our little raised garden beds have been so far. Certainly, some plants have not yielded what I would have hoped (spinach and peas), but we have tasted the incomparible first fresh homegrown tomato (cut in six wedges so everyone could enjoy), lots of yummy leaf lettuce and some beautiful red potatos have been poking up so I had to bring in more soil to keep them covered for the rest of their season.
The corn has tassles on it already but is not as tall as we would like to see, so I'm not sure how truly productive each stalk will be; time will tell.
Tomorrow is the big day for Joel and Brina, auditioning for various music programs in the area.
Brina continues to pursue fiddling and homeschool orchestra and is now hoping to join the local youth symphony. She and I are also working on some violin/piano pieces we can share at church or Sukkot soon.
Joel is hoping to become part of a jazz/big band ensemble which graduated three trumpeters last year and he's is also considering the local youth symphony.
Cyan is preparing a dance to present at Sukkot in a couple of months. Sorry if I have posted this before, but I'm so excited for her. Her grace in movement has really changed over the last year and she can concentrate more on the worship words she hears in a particular song and how to move to it, instead of working so hard to just keep her balance.
Meanwhile Maxim is into a regular routine now with weekly physical therapy and continuing to stretch in his command of English. The physical therapy is not easy for him, but we do the stretches every day at home too and I do notice a difference in his flexibility. He has definitely regained a good bit of his previous trunk strength and can sit up much straighter without support. We are encouraged that he will consistently get all the way up on all fours and crawl rather than moving on his belly everywhere as in the past.
The whole family is counting down the days until we are on our way to Washington State. Just thirteen more days. We of course love love love our family and friends in Michigan but if you are a household with loved ones far away, you understand the feeling. Time with the distant ones, when you can achieve it, is precious.
Our time between now and the trip is absolutely packed. The auditions as I mentioned before. I have some dental work to get completed. Brina is hopefully getting her braces off either this Thursday or next. I have a couple more Sabbath school preschool classes to teach (if you've never tried this, go for it; these little kids are both sweet and challenging) as well.
As you know, the specialist who did Maxim's hip reconstruction is now scheduled to do surgery on his feet on September 11. The plan is to remove the talus from each foot, as I've described before, possibly transfer some tendons, and fuse what is left into the best position possible. The closer we get, the more uneasy I feel about this plan. Not a matter of whether I trust the doctor and her team. It's a matter of how once those bones are removed, there is no going back. The testimonials of others who have experienced similar treatments are not always encouraging. So, I am doing everything I can to get educated on alternative approaches that are not invasive but can encourage Maxim's feet into continuallly better position. I have spoken to several Rolfers (sorry I'm not sure how to do a link, but look this up on the Web; very interesting) and also to a local acupuncturist. We have the opportunity to consult with both types of practitioners next week before we leave for the West Coast. Both of these approaches are based on philosophies of healing that have been around for thousands of years and I do see some encouraging testimonials regarding both as they relate to clubfoot.
Since the specialist we have been seeing feels from her own understanding that the next step is surgery and she is not planning any more casting to improve Maxim's foot position, it makes sense to me to pursue anything else we can that will continue his progress without surgery. Why rush into the surgery simply because it's the specialist's "last card to play" as far as Maxim's feet go? My gut says look for all other options first and then if bone removal is truly necessary, we'll at least know we left no stone unturned.
When you are parenting children with special needs, it is often a challenge to explore everything you can do for them while maintaining family balance and not tearing yourself apart if you later realize you could have done something different.
I guess all parenting involves some second guessing of self and some "hindsight is 20/20" revelations along the way. When your special needs child is also adopted and needing to catch up because of early life neglect, the parental sense of urgency is heightened. So I am finding that I have to be careful to balance wanting very much to help Maxim catch up to his peers however possible as soon as possible, with the very real need to take our time with medical decisions so we make the right choices. When he is already seven years old, after all, a couple of extra months to explore options is not a terrible thing.
Does any of this make sense to you readers? I covet your prayers as Daniel and I press on in Maxim's care. I would love to hear from those of you who read this blog because of your own journey related to clubfeet. What have you attempted and found success with?
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1 comment:
Every time I find myself getting over whelmed at how far behind my adopted SN kids are, I remind myself that I cannot make up all at once the years of neglect! And whatever progress we are making is more than they would have received had they stayed there! It takes the pressure off-for a while. O too is counting the days until you come to Seattle! :)
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