Monday, September 30, 2013

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

Sunday, September 29, 2013

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!

Saturday, September 28, 2013

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!

Friday, September 27, 2013

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.

Thursday, September 26, 2013


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!

Surgery Day

They took Kaylie back around 8:30am or so this morning. She was all giggles and enjoying the ride with Baby Bethany!

She has been in surgery a little over 2 hours now and is doing good! We are supposed to get updates every 2 hours. Will try and keep you posted of any new news!

Thank you for your prayers!!!!

Wednesday, September 25, 2013

Prayer Requests!

As we face the 12-16 hour surgery tomorrow, weeks of rehab, and months of therapy, we ask you to join in praying boldly for:
1) the operation to be without complication
2) Kaylie to recover quickly
3) there not be any need for a shunt
4) God to amaze the doctors by giving Kaylie the strength that only comes from Him.
5) Most importantly, for God to receive all the honor and glory for whatever happens!

Hopefully the last day we will see a seizure!

Yesterday, was a great day for all of us. I left yesterday morning at 5am to pick up Paul and Megan to bring down for the day. It was such a great day! 

They were able to stay through dinner! We know that after surgery things will be different, and we wanted them to spend one more day together before Kaylie starts the long road to recovery. 

They also did some brain mapping to determine what controls what. Her language seems to be on the left, which is good and expected. Still waiting to talk to the doctor today to see if anything has changed as far as seizure activity. 

Today is going to be a difficult one for us, knowing that things will be very different tomorrow. Although this is a hard decision to make as parents we know this is the best decision for Kaylie. Kaylie has been seizing and on meds for 8 years and has never had a "normal" life. This surgery will give her the best chance to be seizure free, free from medicine and side effects, and freedom to learn, grow, and develop to her full potential. She will have some disabilities, but with therapy she will have a normal life. 

Thank you for all your support and prayers!

Verse of the day: Psalms 40:5

Monday, September 23, 2013

Doctor Update

Today we were presented with our options regarding Kaylie's final surgery. She has had several seizures and, praise the Lord, they are all on the right side. However, the seizures are happening in the front and back areas, so they are recommending a "functional hemispherectomy". This procedure is her only hope (apart of course from a miracle of God) for seizure freedom. It will come at a high price: the sacrifice of some vision in her left eye and paralysis of her left hand will be permanent. 

The next several weeks and months are going to be difficult for Kaylie and our family. The surgery will be at the end of this week. After surgery she will stay in the hospital 7-10 days to recover, then she will be sent to a rehab center for 2-4 weeks of therapy. 

We greatly appreciate your continued prayers for our sweet girl. One specific request: please pray that she won't need a shunt, that her body will be able to absorb the spinal fluid that is usually absorbed by the brain matter that will be removed. 

Monday AM

The weekend has come and gone and we are going crazy by the minute! Kaylie is back to her sassy self and bossing us around. We are very glad to see her in a great mood, seeing we have been here 2 full weeks already. Boy, where does the time fly!

Just a quick "Thank You" to all who have visited or sent something, this has really helped make the time go by quicker! We also greatly appreciate all those that have been praying and checking in on us through social media.

Still waiting on seizures. The plan is to capture at least 5 before going ahead with surgery. The more they capture though, the better. Kaylie is tentatively on the schedule for Thursday or Friday of this week for surgery, depending on if they get the seizures they want.

The doctor is still optimistic about the callosotomy and says it looks a lot better and has given them the desired information. Just need to see a normal seizure now.

Thank you for praying! We greatly appreciate it more than you will know!

Saturday, September 21, 2013

Missing my other kids!

Just wanted to say publicly that I love Paul and Megan so much. Miss them like you wouldn't believe! They are two very strong kids!

Happy Saturday!

Once again I apologize for not giving an update on Kaylie. 

Yesterday was Kaylie's best day so far for eating. She was able to keep it all down without loosing it! Thankful she fills better and getting back to her sassy self.

We have seen 2 small seizures since the callosotomy and are waiting to see what the doctor says about them. They are quick and short since that procedure, not sure why, but please continue to pray for her to have more seizures.

Now that she is starting to eat good, also pray that she will have a bowel movement. We have put some stuff in her drink to help, but she seems to not drink as much.

Thank you for praying and sharing out story with others! 

Thursday, September 19, 2013

Day 11...I think.

Yesterday and today were pretty quiet days. There are some digestion concerns  right now as she has thrown up twice today right after eating. With sedatives from surgeries and then pain meds, her digestive system seems to have slowed way down. 
This afternoon the doctor came in and gave us some encouraging news. He said the "between seizures" activity has calmed way down since the callosotomy. He cautioned us not to celebrate yet, but it is a good sign that the seizure focus is right sided. We just need a few seizures to show us for sure where the problem is. 
Please continue to pray! We are encouraged by the report we got today, and we cling to the promise of Proverbs 3:5 & 6 -- "Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge Him, and He shall direct thy paths."

Playing the waiting game

I apologize for not updating you on how Kaylie was doing yesterday. It was a pretty non eventful day. There were no seizures that we saw. Usually after surgery it takes a day or two for the  anesthesia to wear off for Kaylie. 

She has had quite the morning already today! We had to change her and the sheets this morning and so while LeAnne was doing that I was feeding Kaylie some yogurt. LeAnne had just finished bathing her and was getting her dressed, when Kaylie started to throw up. So more sheets and another bath!

She has had her head rewrapped and is now...

Hopefully Baby Bethany will be done with her bath before she wakes up!

Kaylie was on the books for today to have surgery, but the doctors are wanting to see at least 3 more seizures before proceeding.

Prayer Requests:

1. Kaylie have a bowel movement. (Still has not had one since last Monday. They have tried all kinds of neat things to try to help her :( but still nothing) They will be taking an X-ray to make sure everything is ok.

2. Kaylie to have seizures. Sometimes it's a few days after a surgery before she starts seizing again.

3. Doctors to have wisdom and keen insight as they deal with Kaylie.

4. Our other children, Paul and Megan, who have been away from us during this time. They are doing well and glad I got to spend a few hours with them on Monday.

Thank you for your prayers! We are encouraged with the results of the callosotomy so far. 

Tuesday, September 17, 2013

No Disconnect Syndrome

No Disconnect Syndrome!!!! Thank you for praying! She is moving and talking!

We now wait for seizures!

Divide and Conquer...we hope

They took back Kaylie just after 8am this morning for a surgery that would disconnect the right side of the brain from the left. She was peaceful and calm as they wheeled her back, and of course Baby Bethany went with Kaylie.

For those who don't know who Baby Bethany is, she is Kaylie's baby that she does everything with. We love baby Bethany and she is part of our family. She has gone through every surgery with Kaylie.

We were told that they would call us when they were done, but we got the call sooner than expected. They wanted our permission to put more electrodes on the middle left side of the brain. The doctors are trying to see if both sides of her brain are seizing or just the right which quickly transfers to the left side.

We are back in the room now, still waiting on her to wake up. Once again be praying for seizures, we need them to start again so the doctors can figure out the next surgery or another game plan. 

Thank you for praying!

Monday, September 16, 2013

Manicures and McDonalds

Kaylie had a fun day in her room today, nothing  really new from doctors. She did have a few seizures today, even though she is back on her meds. 

Ronald Macdonald  came to see Kaylie today! She didn't know what to think of him! 

Kaylie also had fun getting manicure from her therapist today.

Because Kaylie was her last for the day, she let Kaylie pair her nails! Needless to say Kaylie needs a lot of practice!

So thankful for all those that come in and help take your mind off of what you are going through!

While all this was going on I went up to Keystone Heights to surprise Paul and Megan and take them out of school early.  They were surprised and glad at the same time. Took them to Elliano's in Starke for a coffee shake drink. 

Next we went to Walmart to grab a few things and let them pick out something fun! We finished off our time with some Chinese food. So glad I was able to go up there and spend some time with them!

Continue to pray! Kaylie goes for surgery at 8am tomorrow morning to disconnect the right side of the brain from the left side. This will give them more information  to help them figure out what kind of surgery they will do next. This procedure should take about two hours.

Romans 11:33-36 has been a passage of scripture that has been on my mind all day! Encourage you to read this passage.

Thank you for your prayers!

Find us Faithful

It is our prayer that our kids and those that come after us would find us faithful. Although this is a difficult time for Kaylie and our family we know that God has a wonderful plan. We truly want God' s will done in Kaylie's life and trusting Him for the outcome.

Please continue to pray for Kaylie. Pray the Lord gives the doctors wisdom! Pray for our family as we are separated during this time.

Sunday, September 15, 2013

Doctor Update

Kaylie has had at least 14 seizures within the last 24 hours! The seizures are coming from both sides of the brain, which is not good! 

On Tuesday afternoon they will do a surgery to disconnect the left side of the frontal area of the brain from the right frontal area of the brain. This surgery will last around 2 hours, and then send her back to the room to let her have more seizures before they make a decision. 

Please continue to pray! If once they disconnect the brain and she seizes from both sides then the outcome will not be as good. We are hoping once the two sides are disconnected that the left side will settle down and that the right side of the brain will be the only problem.

We are trusting God! Thank you for your prayers!

Saturday, September 14, 2013

Day 6 Afternoon Update

Kaylie has been able to eat soft foods, like yogurt and Goldfish, because she is still swollen a little in her cheek. She is able to drink when she wants to as well.

Kaylie had one seizure at 9:55am this morning, it was a short one, but at least it was a seizure. Then at 2:40pm she had another seizure and then at 2:47pm another one, so a total of 3 so far for the day.

We are glad to see seizures, this will help the doctor and give him the information he needs to proceed with the next surgery. Please pray we will have some tough decisions ahead.

The seizures have worn her out. You can't hear her snoring but she is.

Thank you for your prayers!

Day 6

We woke this morning to a little scare, Kaylie's arm restraint was off and the feeding tube was pulled out. Not sure how long it was off but it was pumping Ensure all over Bethany and the bed. In fact Bethany is taking a bath as we speak.

They said as long as she eats we will not have to put the feeding tube back in. Well, she started asking for Goldfish! She was able to eat a few and drank some Gatorade. LeAnne grabbed some yogurt and cheese grits to see if she would eat. Praise the Lord she ate a whole cup of blueberry yogurt! 

She looks and feels much better! Thank you all for your continued prayers and support!

Friday, September 13, 2013

Feeding Tube

Well because Kaylie is still not eating or drinking much they had to put in a feeding tube to give her food.

Always a difficult thing to have to hold down your child when you normally comfort and help when hurting. We know they needed to do this to help her but nonetheless always a hard thing to do as a parent.

The feeding tube will remain in until she starts eating and drinking on her own. Pray she starts doing this on her own.

Kaylie is on the schedule for surgery on this coming Thursday if we can get the seizures. Please, please pray that the seizures start soon! Poor girl has gone through a lot this week

Day 5 morning

Good morning everyone! Thank you for keeping up with Kaylie and for praying!

This morning Kaylie is doing a little better,  but still has swelling on her head and face. I  sure that it is frustrating for her to not see anything. The steroid should begin to help with that. Kaylie peeked at us through her left eye so hopefully it will continue.

Kaylie still does not have an appetite, it has been Sunday night since she has really eaten anything. She has had only a few sips of apple juice since Sunday. The nurses and doctor making their rounds this morning said they would give her a feeding tube through her nose tonight if she still hasn't eaten anything by then. That will be a difficult task so please pray she starts eating and drinking.

Once again that you for remembering our entire family in prayer!

Thursday, September 12, 2013

Kaylie improving

I pulled out the iPod to play some music for Kaylie. I went through a lot of songs and she kept saying no. She decided on this one and sang along :)

It says: 
"I'm not ashamed to let you know. I want this light in me to show. I'm not ashamed to speak the name of Jesus Christ!"

Sorry can't post the video we shot of her singing along!

End of Day 4

What an eventful day! 

The day started with us waking to Kaylie having both eyes swollen shut. She still has not eaten or drunk anything since those few crackers yesterday. Kaylie is not saying a whole lot except for the time when she asked LeAnne " to take it off" when referring to her head wrap.

Just before lunch we were concerned how Kaylie seemed to be getting worse. The dr ordered another scan to see if anything had changed. They also took a few samples of blood to check out. All this began to LeAnne and I to worry.

Shortly after we got back Dr. Lee and his team came by to give us the result. We had some good news. Dr. Lee said the amount of blood in the cavity is much smaller than last night. It looks much better and there's no shifting or pressure. Blood work is fine too. They are going to start her on steroids for two days to help her perk up, reduce swelling, and help the blood spot go away. They didn't do it earlier because steroids stop seizure activity, but at this point we are more than willing to wait a few extra days to help her feel better. 

It is hard to see my little girl who is usually singing and dancing through the house, just laying in bed and nothing I can do to help her. I started reading and there were several passages that were a source of encouragement: Rest in the Lord, and wait patiently for him: fret not thyself ...Psalms 37:7 and I waited patiently for the Lord; and he inclined unto me, and heard my cry. Psalms 40:1

Thank you for continuing to lift us up in prayer!

A few pics of Kaylie

Day 4 (Actually Day 3 post surgery)

Let me begin today by saying that God has been so good to us and is working in our lives as a family. Thank you all for  praying for us during this difficult time.

I want to also apologize for those who may have been waiting for an update, but last night Kaylie had it rough. I was able to update a little through Facebook.

Yesterday was day 2 post surgery and Kaylie was swollen on her right eye due to surgery. We have been trying to get her to eat and drink a little, since it was Sunday night that she ate last. She started asking for Gold Fish to eat, and of course there are no Gold Fish, however after looking all over LeAnne was able to find peanut butter and cheese crackers. Kaylie was able to eat a few of those.

Kaylie has also been sleepy and lethargic post surgery as well. She has also thrown up several times. Last night we asked for a dr to look at her and he said he wanted to do a CT Scan just to make sure everything was ok, this was about 10pm last night.

Usually Kaylie is all excited about "going for a ride" to get a scan done, but she was so lethargic she had no idea. She doesn't normally lay there either for the scan, but last night we moved her into the scan bed she opened her eyes and then closed them again.

The scan came back and there was no concern and nothing to worry about. LeAnne and I got to bed around midnight and we fell asleep almost instantly.

We awoke this morning to find that Kaylie's other eye is swollen which makes both of her eyes swollen shut. As a parent you feel so helpless in this situation. Every parent is supposed to help their children. 

We know that the third day after surgery is usually the worst and today is only the third day. So, we are trying to remind each other of that. 

A verse that has been a help to me this morning is Psalm 46:10 which says "Be still, and know that I am God..." We are trusting God today for whatever the day holds!

Wednesday, September 11, 2013

Morning of Day 3

Just to give a little background on Kaylie's hospital stay, the last time she ate something was Sunday night around 8am and the last time she drank something was Monday at 8am. Since coming out of surgery she has not said anything, just head movements.

Praise the Lord it is starting to change.

Although we got up a few times during last night, it was the best night thus far. She still has not eaten anything nor has she even sipped on something to drink, but for a few minutes at 2am in the morning we got to see and hear "Kaylie being Kaylie". She was talking to her baby Bethany. "She is a pretty baby" holding her eye to eye and saying it again "She is a pretty baby." We are thankful for having baby Bethany in our lives as well, in fact she has gone through every surgery with Kaylie.

Things to pray for:
1. Seizures- we need several to proceed with next surgery.
2. She will start drinking - help boost her energy
3. She then will start eating.
4. Our other 2 children (Paul is stressing out with school and projects)
5. That we as a family will stay strong and that God would get all the glory through this extremely hard time in our lives.

Thank you for reading the updates and for praying. We are humbled at all the emails, texts, facebook status', and messages. Thank you!

May the Lord Jesus Christ work in our lives today.

Tuesday, September 10, 2013

Day 2

We only got three hours or so of sleep last night. We woke up to the nurse cleaning Kaylie because she threw up due to her surgery. Needless to say we were running on empty today. Kaylie has pretty much slept the whole time since her surgery. She has peeked at us a few times throughout the day.

Kaylie has had activity on the brain, just not seizures. They need three typical seizures before proceeding with the next surgery, but we were told this afternoon they would like to see five.

Kaylie's wires were being worked on and she needed to use the restroom, but couldn't at the moment, so she began to cry. She did not want to go in the diaper they put on her earlier. They were able to get a bedside toilet and we helped her. She felt so much better afterwards, poor girl.

We had a surprise visit from a girl named Lauren and her mother. We were put in contact with her through Kaylie's neurologist. Lauren is a girl that had a hemespherectomy (complete right side if brain removed) in January, as is off all medicines and has been seizure free for over 200 days. LeAnne talked with her mother a few weeks ago and has contacted her through Facebook. She is a Pastor's wife and have been encouraged by their testimony of how the Lord worked in their lives. It was a huge boost for us to have them with us.

Please continue to pray for Kaylie. She is starting to swell and have been told the third day is the worse. Pray she has good seizures and that this will help them decide what kind of surgery she needs next. Thank you all for your continued love and support for our entire family.

Humbled Father

This morning for my devotions I read Psalm 127:3 which says "Lo, children are an heritage of the Lord: and the fruit of the womb is his reward." This verse really, really jumped off the page at me. To think that my children are a heritage, a gift from the Lord. Wow! What a gift that I was blessed with! I am the blessed father of three wonderful children, Paul, Kaylie, and Megan.

To think that God before time, picked these kids to be mine, I am extremely humbled. I know that I don't deserve them, but grateful for the opportunity to be their dad and to try to raise them for the Lord.

I have a " special needs" daughter, and yet my other two are just as "special". My children  are truly a reward from the Lord that I often take for granted. Thank you Lord for seeing fit to place them into my life!

End of Day 1

Just a quick update on Kaylie's day.

Her surgery was scheduled for 2pm and they did not take her back until after 6pm. Poor girl was hungry, she asked everybody that came into the room for a snack.

We were told the surgery would last 6 hours. LeAnne and I with our families after we stopped crying went down stairs to get something to eat.

A few minutes ago Dr. Lee her neurologist came out and said she did good as expected. They were closing her up and then taking her for a scan. They covered the entire right side of the brain with the electrodes and then another 48 on the left side.

We get to see her in about  an hour and a half! Can't wait to see my baby girl.

Thank you all for praying, posting, and texts today! It means a lot and a big encouragement! Will post another update tomorrow.

Monday, September 9, 2013

Day 1

A verse The Lord has brought to my memory this morning is Proverbs 3:5 - Trust in The Lord with all thine heart and lean not unto thine own understanding. 

As with Kaylie's last surgery, they shave her head and so that she is not alone I shave my head as well. Here are a few pics of Kaylie just after they took her back to get ready.

Thank you all for your prayers and support! We know our Great God, HE REIGNS!

Please check each day for new updates!