August is winding down and as I look back to see what we did with our days that went way too fast, I see a lot of growth. We started May with another trip to Omaha for our yearly clinic. The best news was that Willow's bone density increased by a lot. In the OI world, I am told that this is normal following a year on biophosphates and good nutrition. I am also told that this does not mean she will not break; she still has bad bone composition even though there is more of it. But I rejoice in knowing she has these numbers in her column. She did have a break prior to this and another break a week later. These brought me up short and I had a struggle to realize that her many victories do not cancel genetics and there is still a lifetime of needs ahead.
Summer also brought Willow's first wedding; the marriage of a cousin. Her goal for the proceeding months had been to dance at the wedding and dance she did. As I stood both watching and dancing with her I wanted to yell to all those sitting conversing, "Do you see this? Do you know what an amazing thing this is?"
We went from wedding to vacation and there were more firsts. She rode a bike with training wheels for the first time and played 9 holes of putt putt golf standing/walking. This year she wasn't terrified of the open water of Lake Michigan and went in with gusto.
July was a blur of swimming including doing 2 workouts with the YMCA swim team in which she swam the 25 meter length. Unfortunately this ended with an ear infection. In the past few weeks, she has learned how to shoot an arrow, kick a ball and jump in the pool. She is always appreciative and proud of herself but never satisfied with what she has done. She wants to do more and more. Today she told me we should go back to PT so she could learn how to skip.
There are some sad days as well. A few days ago she asked when she is grown will she still need a wheelchair? I felt bad as I realized I had asked her to sit in it. She likes to walk around the kitchen as we are making dinner and I fear she Will get knocked over. I sometimes find myself saying "please sit and rest" or "stop walking for a while." I never want to limit her but at times I think we are both just winging it praying to God he gives her whatever she needs to know as far as limits.
Monday, October 2, 2017
Thursday, May 11, 2017
A year in the making.
April 30th marked our 1 year home with Willow. I put together a video and we celebrated with ice cream but there is so much that pictures can't show.
They don't show her bravery at times when she is unsure and asks me, "Mom, should I?" This as she sits at the top of a slide or stands on the edge of a pool.
There have been those times where I have to tell her she will be having surgery and she says "scary" and there passes that look in her eye where I know she is remembering China surgery. She will often then tell me something of her past and it is never good. But she doesn't complain because she doesn't know she should have expected better from the adults around her. I am the one who rants inside.
Today we are in Omaha at a 2 day clinic for O.I. involving x-rays, bone scans, meeting with her surgeon and a OI specialist and finally getting her IV infusion of a med that helps her bones hold onto bone cells it wants to get rid of. I notice she is more leery of the needle and I think this is a good sign. I think it means that normal for her is not pain anymore. She still has the pain of broken bones (she has one now that I suspected but wasn't sure of) but adults hurting her is not expected anymore.
She has learned so much that it is a temptation to think she is ok. But she lived in an orphanage for 5+ years and much of that time in a medical setting (I.e. in bed). Her mind is sharp and she is a quick learner but she still struggles with many things. She knows words but still struggles with their meaning and has to ask over and over again what it means. Her newest word is consequence.
Her mind races so fast that she often stutters and we have to slow her down.
She always struggles with self control reaching out to grab or push a button without thinking. I know she tries hard but when she is under stress (medical appts) She often reverts to this behavior.
She is so good at picking up on others emotions. When I am struggling to try and do everything life requires, she'll ask me "Did we hug today?" Then I get a big hug and realize what a great heart she has.
They don't show her bravery at times when she is unsure and asks me, "Mom, should I?" This as she sits at the top of a slide or stands on the edge of a pool.
There have been those times where I have to tell her she will be having surgery and she says "scary" and there passes that look in her eye where I know she is remembering China surgery. She will often then tell me something of her past and it is never good. But she doesn't complain because she doesn't know she should have expected better from the adults around her. I am the one who rants inside.
Today we are in Omaha at a 2 day clinic for O.I. involving x-rays, bone scans, meeting with her surgeon and a OI specialist and finally getting her IV infusion of a med that helps her bones hold onto bone cells it wants to get rid of. I notice she is more leery of the needle and I think this is a good sign. I think it means that normal for her is not pain anymore. She still has the pain of broken bones (she has one now that I suspected but wasn't sure of) but adults hurting her is not expected anymore.
Her mind races so fast that she often stutters and we have to slow her down.
She always struggles with self control reaching out to grab or push a button without thinking. I know she tries hard but when she is under stress (medical appts) She often reverts to this behavior.
She is so good at picking up on others emotions. When I am struggling to try and do everything life requires, she'll ask me "Did we hug today?" Then I get a big hug and realize what a great heart she has.
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