Saturday, August 27, 2005

Kayla's Muscles Are Getting Rigid

We are sorry that we haven’t been adding updates for the last several days but we have been very overwhelmed after several long discussions with the doctors regarding Kayla’s progress.

Kayla’s vital signs have been stable for the past few days. She has increased her milk intake and is successfully processing it. However, the doctors are still very concerned with a number of issues including her inability to be weaned off the ventilator. They have let us know that her breathing tube can only last so long and if she is still on the vent by the time she reaches her original due date of 9/18 then they will have to consider putting a tracheotomy tube in her throat to connect the ventilator. We are hoping and praying that she can successfully get herself off of the vent before that time.

The doctors are also concerned that Kayla does not keep her eyes open for more than a few minutes a day. Their biggest concern is still regarding her muscle tone. What we have felt as an improvement in her tone over the last few weeks is now being defined by the physical therapist as muscle rigidity and stiffness. She is unable at times to fully extend her arms and has recently started having muscle twitches. These changes in her muscle tone are very concerning since they may point to a more serious problem, a brain injury. The doctor’s all feel that the genetic tests being done to rule out muscular dystrophy and other muscle disorders will likely come back negative at this point. The doctor’s plan for the next few weeks is to 1) allow Kayla to rest and grow, 2) perform a muscle biopsy of her thigh muscle tissue and 3) do a second brain MRI to compare her brain changes to the first MRI. We are hopeful that we will finally get some answers back in the next few weeks about the source of Kayla’s health issues.

My mom, “Grandma Jane”, gave Jeff and me a beautiful poem the other day that has really touched us deeply and we wanted to share it with you. It was written by Ann Weems in 1980.

For our sweet baby Kayla

If I could, I’d write for you a rainbow
And splash it with all the colors of God
And hang it in the window of your soul
So that each new God’s morning
Your eyes would open first
To Hope and Promise.

If I could, I’d wipe away your tears
And hold you close forever in shalom
But God never promised
I could write a rainbow,
Never promised I could suffer for you,
Only promised I could love you.
That I do.

We love you with all of our hearts,

Mom & Dad

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