Dear friends and family,
(**Video and pictures attached for those receiving the email alert - you may need to watch online instead.)
I am sorry to have to report that since returning from New York on Sunday, Lucianna has gotten worse each day. Today, I was unable to get pants/shorts her because when she woke up this morning, her legs were in a locked, bent position. I foolishly tried, but quickly realized that she could not flatten her legs out.
Monday to Friday of this week...
During the first half of the day - she is unable to walk, stand or put any weight on her legs and requires being carried around. Mid-day she is able to walk more but is hobbling like an old women or a kid with a full diaper. On Wednesday, she was complaining of two fingers hurting and not able to make a fist, although she hasn't complained of that since, thank goodness. As of late, when she is able to walk, she needs to hold onto a table, wall, or anything to help her get from point A to point B and has been caught wincing when her leg slips into an undesirable position. It is becoming more apparent that her hips are causing her a lot of pain now as I see this just based on the way she walks. I think our bad days are starting to out-number our good ones, so we want to get to the doctor before she gets any worse. We emailed her doctor late last night and shared our concerns. He wrote back very quickly and stated that he would like to see her next week. Unfortunately, his first available appointment isn't until Tuesday, 7/31. Sigh. I am hoping they get a cancellation and can get us in earlier.
Instead of going into all the possible next steps for treatment, I will reserve that for my blog after our appointment at Hopkins.
Many of you have expressed to me how incredibly helpful it has been to see Lucianna in the videos and how it helps you to visually understand this illness. The video below is not easy to watch, but trust me when I tell you, that even though she looks this way, she is having fun and still "being a kid".
This video was taken tonight. This is what I call a "not-so-good day", since she didn't really walk all morning and this is her walking in the evening. You can hear her ask me to "carry her" in the beginning of the video and at the end you can see she still has that awesome laugh!
I wish I could truly express how tough it is to carry this 32lb child everywhere. I so appreciate our wonderful nanny Kylee who does it without complaining. I have a daily, consistent back ache...I want workman's comp!
Well, let's end on some good notes: As you know since the pain has really started to bother her in the night, she's been not only reluctant to be alone at any time, but also desperate to sleep with us. She literally has not wanted me to be in the kitchen, if she's in the living room which is about 20 feet away. She wants me right there with her. Bedtime has been incredibly hard. I decided to rearrange her room, get her in a big girl bed and give her Bella's old fish tank sound machine to "change it up a little". It has worked wonders. She is sleeping soundly right now, alone...with ocean sounds playing. I know she will call out for me in the middle of the night as usual, but it was good to be able to get her to start out in her room.
This weekend we are going to get the "real-deal" - a full size bed since her cribs converts to it! I LOVE THE SMILES!
We will update you all if anything changes, but right now, 7/31 is the next step.
I love the matching cheek bones...other than that, they are as different as night and day.
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