Today was the first day that we had to start turning the keys three times per day on Lydia's fixator in order for the bones to move apart and so lengthen. She is going to grow 1.5mm per day on her left leg. We also have to clean the pin sites every day with saline solution and loads of Q-tips. I can't believe she has 18 pins going into her leg! About 13 of them have to be covered with fresh custom-made foam pads every day and each pad costs $3. Some of the pins need more than one pad too. It is a crazy expense and we've been told that the insurance companies don't cover the cost of it - over $1100/month for foam pads!
Lydia is taking Roxicet pain medicine and it is taking away her appetite, she's barely eating anything. I hope she starts eating well soon. We can't reduce her pain medication to get her to eat, since last night she woke up screaming in agony because she'd gone too long without any.
Tomorrow we'll be going to her 1st Physical Therapy session which is undoubtedly going to be painful for her. We have struggled to get her to do any exercises today but maybe when she gets into a Mon-Fri routine with her PT she'll be more able to do them back at the RM House with me.
Thank you every one for your comments and words of encouragement. It means such a lot. Love Chrissie
7 comments:
Hi Chrissie and Tim,
It's Anne in England here. Well Bradford really. Julia's given me Lydia's blog so I can follow her progress. I was amazed to see her looking so grown up and so like you Chrissie! Well, what an ordeal you're going through but I'm sure it will be well worth it in the end when Lydia is not hampered in anything she wants to do. That sounds a bit glib and I really feel for you having to see Lydia in so much pain and trying to make her do things she may not want to do. What a bummer.
Anyway Lydia looks in fine fettle and a very feisty girl!
Wishing you all lots of light, love and sleep! Anne xxxxxxxxx
I know you will stay strong during this difficult period. Remember you are all loved tremendously!! XOXO
Oh Chrisiliss ... what agony to witness little Lydie in such pain. My heart heaved with such strong love for you all. You are all so so brave, incredible...
We love you all so much, and thinking of you. Remember in your not so brave moments that you are all cherished, loved and missed by us here in England.
Love you
joolz xxxxxxxxxxxx
hang in there Chrissie ... it only gets better.
Trust me.
We went through the non-eating thing with my son, Billy, as well. (I'm on the fibular hemimelia board on yahoo). It probably won't get too much better until she's eased off of the pain meds a bit. In Billy's case, he lost drastic amounts of weight in the first few months, to the point that we were told to allow him to eat all the junk food he wanted if that's what he would eat. There are calorie supplements you can use if it becomes needed. Billy's 5 months post op and now gaining weight back quite well and looking healthy again, so the weight may be rocky for a little while, but as long as she's building bone well, don't worry about it too much. A good multivitamin helps also!
Lydia looks wonderful in the pictures!
Lorra
We will be praying that Lydia gets some pain relief and her appitite back. She is blessed to have parents who are helping her to have an easier life later on.
Hugs from Ohio!
We love you guys.
Carol
thats unbelievable, those sly insurance companies. Thats over half my wage on something that sounds like a funny kind of washer.
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