Livi's open heart surgery is scheduled for January 7th. We are very nervous but trusting the Lord more everyday as things emerge. With that on the horizon its hard to focus on Christmas, but we're going to do our best to make Livi's first one very memorable. We will be staying in Kansas City during the holidays to make sure she doesn't contract anything that would cause the surgery to be rescheduled.
Yesterday we saw the rehab clinic at mercy for the first time and they seemed very concerned, not only for Livi, but for Brian and I--knowing that families who have to endure so much stress can start to crack, but we assured them that our support system (all of you and more) are making things very comfortable and easy for us. We just wanted to use part of this time to say that we could not make it through every day with such sanity without you all. Even if we don't see some of you often, we have peace knowing that you are praying for and thinking about our family.
Some upcoming appts include therapy tomorrow (of which I will probably post some pictures of Livi eating and stretching) and an EEG followup for next Tuesday. Hopefully an EEG with information will help the doctors choose a better and more efficient medicine(s) and aid them in finding out why this is happening. We would LOVE to find a way for the seizures to stop all together.
A lot of people are asking how Brian and I are coping. It is obviously difficult, and not every day is easy or good, but mostly we feel very loved and supported, making the hard days a little better. Mostly we just don't know what to expect or plan for. We have no idea if she will get better or worse and at what rate either of those will happen. We love her very much and are more than dedicated to helping her at home and in finding the best doctors, but even this brings exhaustion on occasion. Because of the increase in assistance and medical equipment and doctor's appointments, we have been forced to face our pride and learn to accept help and to understand this gives God glory and joy to others. Thank you all for bullying us around and helping us to see that it really does take a village.
Kelly & Brian,
ReplyDeleteWe appreciate so much your efforts in adding information to this blog. I'm glad you know that you are not alone.
Dean & Nancy
You are all truly an inspiration. We love you! Keep us all posted. We will keep praying!
ReplyDeletePete & Laura
Remember, a group of old women prays for you every Sunday night at 5:00. We love you -- Jane
ReplyDeleteI have a tendency to still think of you as "kids," but you have a maturity and faith beyond your years. Always in our prayers.
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