I wanted to give you all a update on Kaitlyn.
I try to write on her blog as often as I can, but it doesn't seem that I can do so very often, I do apologize.
I will try and do better with that, because I know there are many of you who look for updates and earnestly pray for her.
As you remember, if you follow Kaitlyn's Journey on Facebook,
I recently asked prayer for some specific appointments.
Kaitlyn's ENT Dr ordered a CT scan of her left ear , to see a better inside view. She has had difficulty with that ear specifically since birth.
She currently wears ear tubes in both ears to decrease the amount of fluid build up that she has in both ears.
Kaitlyn did very well for her CT scan, and was so brave. She didn't have to be put to sleep for the test, and we were all thrilled!
I love to see her triumph over her fears, makes my heart so happy.
I normally get a call within a couple of days regarding her test results. This time was different, her ENT Dr called me the very same day with her results. I admit when she called me, my stomach was in knots. I knew this wasn't the normal speed in which Dr's will call for test results.
She told me that there wasn't anything alarming on her CT scan regarding her left ear and that she would continue to see Kaitlyn every 6 months. So she could closely monitor her hearing and ear tubes.
That was the good news!
She went on to say that the radiologists who preformed Kaitlyn's CT scan were concerned over some things they saw on the test.
They had actually emailed her ENT Dr shortly after the test was done, explaining what they were concerned about.
To skip all the technical medical terms, I will put this in the simplest way that I can.
Kaitlyn still has a Chiari Malformation. I know a lot of people have come to believe that since she had the decompression surgery back in 2010, she has been "cured" of her Chiari.
This simply isn't the case at all, the decompression surgery is not a cure for Chiari. In fact many adults and children suffering from Chiari may have more than one decompression surgery. I know I don't mention Kaitlyn's Chiari often, but she still has it, and it is a very real part of her life.
With that said, the radiologists saw that the area where the Chiari is located, was enlarged. (That's putting it in the most basic terms)
They advised her ENT Dr to let us know as soon as possible, so that we could speak to her Neurologist and seek a total MRI scan for better imaging of what they saw.
I have to say I hung up and cried, maybe that seems silly, but that phone call brought back all the same feelings and emotions of her first decompression surgery at 1 1/2 years old. I can't remember a more scary and low time in my life. I could never describe to you what it is like to bring your 1 1/2 yr old baby to the hospital for brain surgery.
Unless you have been through it yourself.
It has always been a fear of mine that she would one day have to have another decompression surgery. It has been so easy to be "down in the dumps" since that phone call a few weeks ago.
But my tremendously positive husband, who has always told me
"Rachel, don't worry about it, until there something to worry about"
In other words, why worry when you don't know yet.
He has always helped me see the positive in things,
I have to say it hasn't been easy for him, but I am learning :)
We took Kaitlyn to her Neurosurgeon recently, and brought him the radiologists report. He advised us that it would be a good idea to get a full brain MRI scan. It is scheduled for February 13th at 2:00pm at Children's Hospital in Detroit.
She will have to be put to sleep for these scans, as she would never be able to lay still for clear images.
We covet your prayers so much friends, the Lord knows and HE is able.
Pray for Kait's anxiety and that she would be brave.
This make over 20 times that she has been put to sleep for surgeries, casts and tests. :( It breaks this Mama's heart in two.
Pray for the test results, that God's perfect will would be done regarding this. If you would, please pray for David and I as we seek wisdom and guidance from the Lord. We want what is best for Kaitlyn!
We will update as we know more.
Thank you friends!
Please feel free to send any questions to Kaitlyn's Journey Facebook page inbox and I would be happy to answer them as I am able.