Happy Monday!

Today has been a pretty good for Kaylie! The fever is still hanging around 99-101 but, she is doing great otherwise. They are waiting on the blood cultures to see if that will tell them anything. The doctors don't believe it is an infection some where but, that it has to do more with something "chemical". They want to be safe and not miss a brain infection.

Physical and Occupational Therapy came this afternoon to work with her. She did really good! They had her sit at the edge of the bed and work on her balance. They are very pleased with her progress and so are all the doctors and nurses. Therapy was done in about 30 minutes and Kaylie was wiped out and sleeping within a matter of minutes. She earned that nap!

They are planning on moving her to Brooks inpatient rehab in Jacksonville, Fl when they are done here. There are a few things that need to be done first:

1. Drain to come out

2. Fever to be gone

3. No infections

4. Prepared physically (Brooks rehab will be very intense and want her to be ready)

5. Eat, drink, and have bowel movement 

The only one so far that she has done is number 5. With therapy already working with her, hopefully number 4 should come soon. They have already talked about testing her to see if they can take the drain out.

Please continue to pray for Kaylie! She will have some very hard weeks to come!

 

Kaylie after her nap

Good Day

The day started a little rough with Kaylie still fighting the fever. It hasn't been outrageously high (101.8), but definitely a sign there was something going on. No one could give us a definite answer to the cause, so they started hitting it with stronger antibiotics to be safe. They didn't like the amount of white blood cells in her spinal fluid and that's what got them concerned. 

Since they started the antibiotics this afternoon, her temp has been kept down around 99 with Tylenol and Motrin. She's also been able to chew without pain so she's eating and drinking better. Then we got a visit from Paul and Megan and our awesome friends, Rick and Susan. It was great to spend the afternoon/evening with all our kids again! 

Thank you for your continued prayers!

Second Day post surgery

Kaylie had a decent day yesterday following her surgery. She woke up early and was singing, talking, and was able able to eat a little. There were times where pain was an issue for her, but who wouldn't after major brain surgery. 

I think one I the toughest things for her right now is not being able to use the left side. She gets very frustrated, very frustrated that her left arm and leg doesn't do what she wants. Kaylie asked Leanne to help her, because her leg wasn't moving.

One more frustrating thing for Kaylie is having to use the restroom in a diaper, she hates wearing and use a diaper. She is starting to realize it's ok and that we will help her get clean.

Last night, was a difficult night as well. We are starting to realize that when and if Kaylie sleeps, that we need to sleep as well. Starting to get a little exhausted. Thankful for coffee!

We woke up to a sunny room, always grateful for another day! Kaylie's diaper had over run into the bed, so we helped her get clean and new bedding. She ate two bowls of cheese grits and a blueberry yogurt for breakfast.

Kaylie is getting physical therapy as I write this. 

We know the road of therapy and recovery is long, but she is already doing so good! We got her to sit at the end of the bed and lean on her left arm.

Thank you for your prayers! Will try and update later today!

Day after hemispherectomy

Kaylie is doing well!

She is asleep as I write this, but earlier she was talking, smiling, and using her right hand.

We do not know about her left side yet, but praying boldly that God would do another miracle.

I will try to post updates as I can, please understand if I don't right away!

Once again thank you for your love, prayers, and support for our entire family the past few weeks. We will have hard days ahead of us but we know that God will give us the grace we need each and every day! (2Corinthians 12:9)

We love you all and please continue to pray for Kaylie!

She is out of surgery

Thank you all for praying for Kaylie. She did well throughout the entire surgery. They did have to give her some blood. 

When trying to wake her, the nurse asked Kaylie something and she shook her head no. She is moving her right hand and when LeAnne asked her to squeeze her fingers, she did! 

They were getting her settled in her room and while they were moving her, Kaylie said "oww" or "ouch" can't remember! Either way it was good to hear her voice.

Don't know the extent of her left side, but I am praying boldly to our Great God to do another miracle in her life. Please continue to pray as she will have a long road of recovery! Thank you for your faithfulness in praying for Kaylie!

She will probably be here for 7-10 days before being moved to Brooks rehab in Jacksonville, FL.

Update

Update: neurosurgeon is closing up Kaylie now, and then they will take her for a scan which will last 1&1/2 hours. Waiting to see the neurosurgeon after he finishes to get a report. Word is they did a scan earlier & surgeon didn't like something so he went in again. Keep praying! 

She has done good and had been stable! Praise The Lord!