Abby is hurting and the blizzard kept extended family from celebrating with us on Christmas day. I couldn't bare to watch Abby silently suffer on such a special day so Brent and I decided to move the celebration to a day Abby can enjoy with family we love. We are hoping Abby will be ready on Sunday.
Abby really needed a spinal tap to remove the excess fluid responsible for her headaches on Christmas Eve. The roads were dangerous so her doctors opted to gradually increase her pain medications until she was more comfortable. It was a good plan. It should have worked much better than it did. We were able to take the edge off Abby's pain but she has had a hard couple of days.
The roads are a little better now; not great, but better. Abby is asking me to take her to the hospital for a back poke (and she knows exactly what that means). For a 4 year old to ask for a spinal tap, you know the headache has to be bad. Abby will be admitted to the hospital in the morning. She is thankfully sleeping now and we will leave as soon as she wakes up.
Abby has an appointment with her primary oncologist on Monday. I am praying we can come up with a better game plan then. I agree we need to attempt to fix Abby's increased intracranial pressure with medication before we move towards surgery but we need to do this as quickly as possible. What we are doing TODAY isn't working.
Abby is seen by a large group of wonderful oncologists. This has worked to Abby's advantage many times in the past. Unfortunately, if the treatment plan isn't very clear there can be delays in making decisions/changes only because a doctor who is not Abby's primary doctor is in the clinic. Taking a few extra days to make a decision may not sound like a big deal but when you are rocking a child you love as they cry in pain, it is an eternity.
We have two more medications to try. I will let them try just in case they will keep her from needing the surgery but it is hard to be patient. I don't want Abby to go through any more surgeries but I am ready for this intense pain to stop.
Please pray for us as I drive Abby on the slick roads tomorrow. Like most Oklahoma drivers, I don't have a lot of experience driving in winter weather.
Pray Abby is well sedated for her spinal tap and not scared.
They are able to remove enough fluid to stop the high pressure headaches without removing too much and giving her a spinal headache.
For medication changes to be made that will be helpful.
Wisdom for all concerned.
Thank you for thinking about Abby this Christmas. Thank you for praying for Abby and for caring. I hope you all had a wonderful Christmas. I can't wait to see pictures on your blogs and facebook. While I am grateful Abby is still here with us, I still long for a Christmas where she is free from pain.
Here's how Abby looks when we say,
"Abby, look up and smile for the picture!"
Here's how how she looks the rest of the time
(Does it really need any explanation?)...
... and then a few seconds later, asleep again from a
combination of weariness and meds.
At one point Abby crawled up under the Christmas tree.
I ask her what she was doing but she just stared at me.
She's trying so hard to have fun. I have no idea what she was doing.
We let the kids open one gift...
...Sami is really being a big help and enjoying Christmas.
SpideyLandis was a wild man in the snow.
It's funny... he wimpers like a baby when he gets cold
but if he is doing something fun, it doesn't affect him.
Being the bad parents we are, he is actually in his pajama bottoms
in this photo. They wanted to go outside for about 5 minutes
right as the sun was going down so he just threw on
his boots, coat and hat right over his jammies.
His paper thin PJ's evidently are super warm!
Sami loves the snow. It's the first time she's
gotten to play out in it. No snow in Ethiopia where she lived.
The snow brightened up Abby for a few minutes.