This is Lily waking up after the anesthesia for the MRI. I just liked how sweet she looked in this video and how she's talking to us.
Here's Elise singing her the Itsy Bitsy Spider.
I just wanted to start this post out with some positive looks at Lily. So we went to the orthopedic surgeon today. Apparently, both of Lily's hips are dislocated, the left one slightly worse. Normally what would happen is that they would put the hip back in place and put a cast on for 6 weeks, then do the same to the other side and they would be fine. But since Lily's muscle tone is a bit overdeveloped in her legs, they were concerned that her hips would just dislocate again after removing the casts.
So we are going to start physical therapy to try and improve her rolling, grasping, and sitting abilities and then we will reevaluate in 3 months. At that time, they'll sedate Lily, inject dye into her hips and manipulate them while taking x-rays. This will show if there are any malformations of the cartilage, which could require surgery. If she hasn't moved forward on any milestones in three months, we will skip the casting and wait until she is older (around 2 years) to do a surgery which would put her hips back in place. Basically, they don't want her to be in casts for a total of 3 months, just to have her hips re-dislocate, and end up doing the surgery anyway. I appreciate that they would like to cut back on the number of procedures performed on her.
The ortho was pretty sure that Lily's developmental delays had more to do with her neurological problems rather than the physical issues. What does this mean? Possibly, that Lily may never be able to walk. But we are going to stay hopeful and keep working with her. No doctor has a crystal ball and a lot of kids with her condition have proven the specialists wrong. In the meantime, we'll be seeking a second opinion.
Up next, we have our follow up appointment with the neurologist on Thursday. Hoping that will be better news. I'll post when I can.
thanks for the update! it sounds like you have excellent docs for Lily. And you are such a great mom to be skeptical of the docs predictive abilities, and to work with Lily for the best use of her muscles regardless. I'm in awe of you and Dan, you're amazing parents to your 2 girls. (trying to get the videos to play here in palestine...but she looks s sweet)
ReplyDeleteOh My, she is just too precious and YES, she is definately talking to you, soooo sweet, makes you just want to hug and kiss her all over her little face!!!Your family is so blessed to be her's, she will bring you much joy unspeakable!!!She is so loved!!!!Thanks for sharing..Love you, Aunt Sue
ReplyDeleteShe is just adorable! Thanks for posting updates. We're thinking of you!
ReplyDeleteAs you probably know we never thought Jacob would live independently of us and now he will start law school in the fall! Just keep doing what you are doing, gather the info, trust who you trust, and believe!!! Your girls are so sweet. You and Dan are awesome!
ReplyDeleteMuch love and prayers
The Benders
Wonderful to see videos of sweet Lily -- so tender and precious. I ditto The Benders advice and will add to have faith that whatever the future brings you will be able to meet it with your strength, positivity, grace, love, and whatever you may need. I too am so thankful Lily has you as her family and that you have her.
ReplyDeleteAmy, Dan, Elise and Miss Lily,
ReplyDeleteI start my day watching these videos. Lily is just loving you with her sweet eyes of love and Elise is just the best big sister...it just warms my heart!!!love you, Aunt Sue
Thank you everyone for the kind words and encouragement. I'm glad I started this blog because reading through it and reading through the comments really helps on days when things are harder. It means a lot to be able to stay in touch with so many people across the country (and world!).
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