Monster Storm Has Meteorologists Spooked. This is one of the top stories today on Yahoo. There is a potential collision of a hurricane and arctic blast over the East coast that could be worse than the 1991 "Perfect Storm". After reading the title, that is just how I felt about life in our family right now, our own perfect storm.
Last Tuesday night Livy had a flurry of seizures in her sleep. We weren't quite sure what to make of it but it made for one rough night. There is nothing like being woken from a dead sleep to the sound of your child seizing. I have friends who know exactly what this is like and they would agree. She appeared to be OK during the daytime for the next few days but the nights were terrible. Nocturnal seizures are not usual for her and we knew something was brewing. Jon and I started brainstorming. The barometric pressure dropped dramatically last Tuesday. Ahh, that must be it! Or maybe it is because Livy is due to have her hormonal implant changed out and the medication must be not as effective. That must be it! Or is this just Livy in her ever changing seizure cycle?
Sunday afternoon Jon was stretching out Livy's left leg and foot and realized that every time he touched her foot, she would pull it back and it was much looser than usual. Jon knows Livy to a tee and he can recognize any small change in her. But what could this be? It didn't make sense. The only thing we could think of was that on that Tuesday prior, we had her standing at therapy on a vibration platform and she was bearing all of her weight onto her left leg. We did not use the usual knee immobilizers thinking it would be a good thing to try. At no point during her standing did she show any sign of distress other than her usual, "I've had enough now, can you take me down" sounds. Shortly after she fell asleep and we ended the session a little earlier than usual.
We were scheduled for a follow-up at her orthopedic doctor this past Tuesday. We asked them to check out her left foot as she seemed to be guarding it for some reason. X-rays were taken and shortly after the doctor came in and uttered the word "Fractured". What? Did you say fractured? Yes, she had a calcaneus compression fracture. In that instant Jon and I had a feeling of relief. This was most likely the culprit for all her seizures. But wait, her heel is broken? The doctor told us this is rare and something he only sees when someone falls from a ladder or building. It is also called the "Don Juan" fracture relating to when men would jump from the windows of someone else's wife after being caught (just thought I would throw that in). As you can imagine, we were very surprised. Could it be that just by bearing all of her weight on her one foot on a vibration platform could have done this? It is the only explanation we have.
They casted her in a short leg cast that will remain for five weeks. She seemed to have an almost instant look of relief in her eyes. "Thank you Mom and Dad", they said. If only she could have told us sooner. Jon pretty much summed it up when he said we had to be detectives to put all the pieces together. Nothing is more frustrating than trying to figure out what she needs, why she hurts, how we can help her.
Livy still appears very uncomfortable and the seizures are still coming. We can't explain to her what happened and why she has to wear this cast. All we can do is comfort her and give her medications for pain and to ease her seizures. Jon and I are praying this is short lived and that she will turn the corner soon. Poor thing was in pain and seizing for a week before we ever knew what was happening.
So, back to the storm. This is how we describe what is going on inside Livy's head during times like these. The combination of the pain from the break and her underlying condition results in a disturbance of activity that we have little control over. As always we will do whatever it takes to keep her out of the hospital. We need to ride this one out as best we can and hold on to the hope of this storm passing quickly.
You and Jon are THE BEST parents any child could ever hope to have. So much love. Sending healing thoughts your way.
I pray that Livy improves. ALL of you deserve such admiration, combined with your LOVE for one another is a testimony to GOD. May you grow in strength, love and faith on this road of learning of acceptance .
I'm sorry that Livy is going through this, but I am glad that you found the culprit. Our kids live in such a delicate balance and the slightest stress on their system throws that balance off. Rest well Livy!
Just read an article in the Boston paper about a father who is disappointed that they are having another girl for their third child. After reading this I'd like to shake that man to be grateful to God for his twin daughter's health. Jon, you need to write a book one day. You have a way of touching heartstrings and making people aware of the problems associated with a disability.
You really have to be a detective with these kids. Did the fever cause seizure or seizure cause fever---always looking for clues when seizures start. I do not know how you keep up with it! Thinking of you guys and praying for sweet Livy.
Poor darling, so sorry she is uncomfortable. I pray this is short lived and she gets used to the cast. I know it takes time for the seizures to quiet down but hopefully it will be soon. Lots of love to all of you.
I am so sorry that Livy and you all have to go through these hard times, especially trying to figure the whole
thing out. You are in my prayers and may God Bless.
One of my favorite quotes is " I am not afraid of storms for I am learning to sail my ship". This gives new meaning wouldn't you say? Love you all....I totally feel your pain. Our walk is day by day! I have also really learned to rely on my anchor....God!
Hope Livy feels better soon! finding out about the broken bone must have come as quite a shock. Prayers for a quick recovery!