OK, it's a tough one...what lights up your eyes more, that smile or those socks?
It's time for an update! We have been busy all wrapped up in a very exciting project that we will be sharing with you all shortly. It's a good one, and we can't wait to share it with the world. Stay tuned...
As much as I don't want to tempt the fates...I am just going to say it...Livy has been on a roll with some pretty fantastic days. I'm telling you...it's those nasty, despicable seizures that puts a huge dent in her ability to shine. We have had them pretty controlled with her current medication concoction. It is difficult not to think about the possible long term side effects of the drugs especially when we don't know how they affect kids in this particular combination. We just know that, for now, they are working and her quality of life is greatly improved.
Our recent visit to the orthopedic doctor confirmed that her left hip is now completely out of its socket. I know it sounds crazy...how can that possibly be? Kids like Livy do not have the strength in their muscles around the hip joint to help keep it in place and because she is not weight bearing and walking, the hip does not properly stay where it should. Livy shows no sign of discomfort which is a blessing. We are hoping to avoid arthritis in the hip and it is best to just let it be and allow it to just hang out in the soft tissue. Surgery is not a desirable option considering it would put her in a full body cast for up to 6 months and may not even work.
During Livy's therapy sessions we are still working on standing, sitting, rolling and overall strengthening. She is signed up for her next intensive therapy session for the first week in July. These weeks are excellent boosters and allow us to concentrate on specific skills. For those of you not familiar with Therasuit Therapy, you can visit this link to learn more: Lampert's Therapy Group.
Sleeping has greatly improved and I think we can chalk that up to a calmer brain. She is still a late night owl not usually able to drift off until midnight sometimes. But once she gets into that blissful, beautiful sleep, arms above head, light snoring, it's all good. And the mornings, when we come in to greet her with "Good Morning O-Livia" with sing songy voices, her face lights up and another amazing day without a care in the world, for her, begins.
Looking back at photos of the girls when they were itty bittys reminds us that they are growing up fast. We know we will always have different challenges lying ahead for us when it comes to Liv. That only makes living day by day that much more appealing. Living in the moment and cherishing that smile, that unconditional love for life, that's what we do.
We know we are in an upswing right now and we will cherish each minute but we have other very special friends that are going through hard times. It seems to be that way, some of our kids are up and some kids are down. We know all too well how it feels to be where they are and we are right there with them. We understand how quickly things can change. So, we will be thinking of them and hoping for better days ahead. Always keeping that HOPE alive.