This is just a quick email to update all of you. This past month has been very difficult for Chloe in terms of her seizures and her sleep. She has become much more agitated and has had several crying episodes during the day and through the night. We have hit a wall in terms of figuring out how to keep her calm and organized and have felt at such a loss when we hear her painful cries late in the day and in the middle of the night.
After a very stressful two weeks in trying to overcome this mountain on our own, I broke down and contacted our entire team of doctors and specialists to find out what could be going on. Currently, we are back on the peds unit at NY Presbyterian Cornell. We were admitted yesterday afternoon and will stay for at least a few days so that her team can obtain a proper observation of her.
This has obviously been very difficult for us and we hope that you will keep us in your thoughts as we go through the days of sitting bedside in a hospital. Over a 12 hour period, Chloe already registered more than 80 mini seizures and everyone is grappling for guesses of what should be the next step. In my heart, I have felt that something was off these past few weeks but never would I have expected that her jolts were at this high number. It is beyond heartbreaking and we are all emotionally exhausted.
We will be in touch about the next step and any news. We have plenty of doctors and even two new teams of specialists to help us through this. Chloe is in good spirits; she has actually been behaving really well and has had no crying episodes yesterday or overnight (of course!) Why is it that when I need her to misbehave and show them her true self, her superstar persona comes out and she is an angel.
We will keep you posted over the next couple days.
Thank you everyone.
Much love,
Michelle, Reth, Olivia and Chloe
Sending lots of love and light! We pray for her lots always, but will up it a bit! Keep you chin up, you guys are doing a GREAT job!
ReplyDeleteLove,
The DiCarlo's
Michelle & Reth,
ReplyDeleteI'm so sorry Chloe has been going through so much lately! She surely is a special little angel... and inspire in us so much strength and courage. You're all always on my prayes and thoughts, but now even more.
"He gives strength to those who are tired. He gives power to those who are weak. But those who trust in the LORD will receive new strength. They will fly as high as eagles. They will run and not get tired. They will walk and not grow weak."
Isaiah 40:29,31
With Love,
Juliana
You guys are always in my thoughts and prayers. I miss you.
ReplyDelete- Lauren (Nurse from the PICU at Cornell)
I am so sorry to hear of the increase in seizures. Thinking of you all and sending much love,
ReplyDeletexoxoxo
Auntie Jaime
My thoughts and prayers are with you.
ReplyDeleteXOXOXOXO Anastasia