Saturday, April 30, 2011

GOD'S timing is best!

We were a little disappointed when we found out we had to wait until Monday for Kaylie's surgery instead of Friday like the doctor had originally told us, but then she had one of her typical seizures on Friday evening. Because of that they are going to do the brain mapping again tomorrow to make sure that the current map is sufficient. God's timing is perfect! If we had had our own way we may have missed something!

Thank you for your continued prayers and support! We are trusting God to do what only He can do.

Proverbs 3:5-6!!

Friday, April 29, 2011

The end is in sight!

Late yesterday afternoon Dr. Carney did the brain mapping and Kaylie was great through the entire test. He came back around 8:30 p.m. and shared the results with us:
He had looked back over every seizure she's had since admission -all 50 of them- and is confident in the map he drew for the surgeon. He did say there is a slight overlap in one area of the motor strip that he cannot remove. There will be a possibility of seizures following surgery because of that, but he is hopeful and optimistic that she will be seizure free. We are praying for the 100% cure, but the Lord is in control and the end result is up to Him.

She will start taking her seizure meds again on Sunday, and surgery is this Monday at 8a.m.. Please pray that all goes well and for a swift recovery!

Wednesday, April 27, 2011

Good news!

Late last night Kaylie started having seizures! She had quite a few in a short amount of time, and one was several minutes long so they had to give her something by IV to stop them. Then she couldn't go back to sleep and has been awake until just about an hour ago. She had a really rough morning: between three doses of the anti-convulsant and a couple of doses of Morphine and vomiting, she was having a really hard time settling down. It's definitely been the hardest day on her so far.

Day 10 has taken its toll on me and LeAnne as well. It's hard to stay upbeat for so long, especially when there is nothing within your power to help your child feel better. But God is good and He sent the doctor in to give us some good news! He sees a pattern forming in all the seizure activity recorded so far and they are localized to one area! He plans to do the brain mapping tomorrow morning to locate her motor strip and we could possibly go to surgery tomorrow afternoon or Friday morning.

We have made it this far only by your prayers and God's strength! Please continue to pray as we start to wrap things up: 1) for Dr. Carney, for wisdom in deciding where the epileptic area is and how much to remove 2) for Dr. Pincus, the surgeon, to have a steady hand and sure eye 3) for Kaylie's recovery and that God will allow this to be a 100% cure for her epilepsy.

Tuesday, April 26, 2011

Day 8 of Epilepsy surgery

Sorry I have not updated the blog in a few days, but the past couple of days have been difficult. We greatly appreciate all the prayers that been made on behalf of Kaylie. All the visits, texts, and phone calls have all come at the right time. There was one time when I received a text message when I was dealing with a lot and was encouraged. You will never know the power that prayer has!

I told you last that there was a lot of leaking from where they did the first surgery, and that they put a lumbar drain in her back to help prevent further leaking. Well, Sunday they checked and there was still a lot of leaking and so they decided to open up the drain in her back to start draining the spinal fluid. That seemed to work but she was not feeling good all day.

Monday was not any better. She was lethargic all day. They peformed a mapping test. A test that determines what part the electrododes on her brain control, to make sure they are not in her motor strip. Shortly after this test she began to vomit. We are not sure if maybe there was too much pressure in her head or if maybe the drain in her back was draining too quikly. Kaylie slept for about 2 1/2 - 3 hours after. The nap seemed to help, she was back to laughing and talking afterwards. She also became dehydrated from not eating and drinking and had to start an IV again to give her fluids.

Kaylie is doing  much better today. Talking, singing, and playing with baby Bethany! I brought Paul and Megan today and she was happy to see them.

A verse was shared with us yesterday and I wanted to share it: Job 5:18 "For He inflicts pain, and gives relief; He wounds, and His hands also heal. So thankful that the Lord has hand in Kaylie's situation!
LeAnne's verse for the day is Psalm 73:26 "My health may fail, and my spirit may grow weak, but God remains the strength of my heart; he is mine forever."

We are trusting God to do what only He can do! Please contine to pray, we need for Kaylie to have some good seizures so we can move to surgery 2.

Sunday, April 24, 2011

Resurrection Sunday!

Happy Resurrection Sunday everyone! HE LIVES!

Well, Kaylie came through her procedure really good last night. They added sutures to her incision, which was leaking pretty bad. We were told that leaking was normal and was not unusual. They also put a lumbar drain in her back just in case there is some more leaking and need to drain. It was better for them to put it in when they did the sutures, then to go back again to do it if they needed it done. Then they turned her upside down with her head to the floor to see if there was anymore leaking, and NO leaking!

Kaylie has amazed us through all of this. She has been in a wonderful mood considering her circumstances. She was laughing and playing with mommy until they put her under. We were told that she sang to them the whole time they were working on her. For you that know here, she loves to sing and dance! To clarify she was given antesthesia but was not completely out with a breathing tube. Kaylie was breathing on her own and awake, just wasn't there and feeling no pain.

Praise the Lord, she is having some activity! Our Doctor came in yesterday and told us that she had 2 events, thet were not big ones, but there is activity. We were awoken last night at 2am with Kaylie having a seizure, and just now as I am writing this the nurses were called in because of some activity. She was lying there watching Mickey Mouse Clubhouse, she was responsive, but evidently the EMU people saw some activity on the EEG. Please continue to pray that she will continue to have seizures! We (LeAnne and I) really want her to have a seizure that we normally see to happen!!!

Hope everyone has a wonderful day! We love you!

Saturday, April 23, 2011

Speed Bumps with Kaylie

Well, Kaylie's come to a little bump in the road to surgery. Yesterday they took the drain out of her head because it had slowed down and almost stopped completely. Within 24 hours her bandages were soaked through. When they unwrapped her they discovered several heavy leaks, so now they have to do a procedure to relieve the pressure in her head. She'll be moved briefly to PICU again to get a few more stitches and to have a drain put in her lower back. Please pray this will go smoothly, and then that she'll have seizures quickly so we can start the healing process!

Friday, April 22, 2011

Pictures of Kaylie in the hospital

Kaylie right before they took her back on Monday AM.

The top photo is where they put the grid on her brain. The bottom photo is just after we saw her after her surgery!

Kaylie's face after some swelling!

This Kaylie today!

Still no seizures! They want us to sleep deprive her! Keep her up late and then wake her up about 3am. Thanks for the prayers! Pray that she starts having some seizures!!!!! We love you all!

Wednesday, April 20, 2011

Day 3 PM

Kaylie has had a day! She threw up this morning after trying to eat and drink something. We try every hour or so to offer her something to eat and drink and are very happy when we can get even a little down. Unfortunately there was a lot of phlegm that she got choked up on and threw up.

She had a pretty good afternoon, with not a whole lot going on. Had a few visitors and pretty much was in a decent mood. They only had given her one injection of pain medication for most of the day. Which is good, we don't really want a lot of pain medication is she doesn't really need it. We DO give it to her when she complains there is pain in her head.

This evening she was complaining of some pain so instead of the injection through the IV we asked for Tylenol which we would give her orally. With a lot of coaxing and help from LeAnne and I, we were able to get the Tylenol down her. (This is big deal, she only takes her medications in something to drink) However, she started gagging on the Tylenol and phlegm and threw up once again! Poor baby! So we called the nurses and we were cleaning her up when Kaylie told us she was having a seizure! So we mashed the button on her unit to let those monitoring know. She usually tells us when she feels one coming on, so this was nothing new, but with this one she didn't really act any different. The one's monitoring her got on the intercom and started talking to Kaylie and started asking her questions to she if she was responsive.

It was funny, one question that they asked her was, "Do you know where you are?" to which she responded "Right here." I had to laugh! Anyways they did not tell us if it was officially a seizure, we will find that out in the morning when we talk with the doctor. Please keep praying for her! She has been without seizure medication since Sunday and this is the first event.

Also pray for her swelling. Her right eye is now having some stuff leak from it and is in her eyelashes. The doctor is supposed to be by tonight to take a look. We hope that it is not infected!

We know the LORD is in CONTROL and are trusting HIM to watch over her!

Day 3 AM

Last night was a little better than the night before. We actually got a little more sleep. however, Kaylie didn't sleep a whole lot. We don't know if she is in pain or if she is just scared and won't go to sleep. The right side of her face is still pretty swollen, poor girl. In fact, her right eye is completely swollen shut. The doctor has told us that it could be like this for even up to a month. It may turn black and blue before long.

We finally got the constipation problem resolved this morning! Praise the Lord! It is amazing what happens when this is cleared up. She is back to being Kaylie. She and mommy were able to talk about a princess poster we were hanging up on the wall. LeAnne was happy to have her back. She is calm and watching Signing time!

Bailey a male yellow lab (Shands Dog) came around and saw Kaylie today. She was happy to see him. She was better this time around with Bailey. In December Bailey came around and about jumped on the bed and scared her. So thankful for what Shands does to make the stay more enjoyable.

Thanks again for those who have checked this blog and are praying, called us, texted us, and have visited. We greatly appreciate everyone. I also wanted to apologize if I don't answer everyone I get busy, thanks for understanding. Please do check back as I will update as news happens!

Tuesday, April 19, 2011

Day 2

So the first night was rough! It's hard to sleep in a chair when you haven't had a shower, monitors keep beeping and the lights are on. Then you every half hour to an hour nurses, doctors, and people with all kinds of initials come in to check on her. Don't get me wrong we were glad they were checking, just hard to get some sleep during all of this.

Well, this morning was a little better. Kaylie was able to eat her fruit cup for breakfast. She still doesn't drink a whole lot, so they still have hooked up to the IV. She is depressed and has been saying that things are scary and that she wants the "head thing" to come off. I am sure that it is still the anesthesia but hopefully this will go away. Please pray for her she really needs the prayer.

We got to go to our room on the 4th floor around 12:00PM, which made us all very happy. Still nothing to eat for lunch, but the doctors have said this is normal. We try and feed her and she wants nothing to do with it. Don't know if she is in pain or not, she has had some pain medcation through her IV a couple of times today. We sit and watch Dora and Signing Time, so thankful for this time savers, it helps in a small way.

This afternoon Kaylie's face has started to swell pretty good. It is tough to see. It is so difficult to see your child in this situation. I feel so helpless and want to do something but can't. Once again we talked with doctor and has assured us this is all part of what happens after surgery.

Thanks to all who are praying and concerned! Here are a few prayer requests: 1) The pain and swelling will go away. 2) For Kaylie not to be scared. 3) For Kaylie to have seizures. I know this sounds weird, but we need siezures so we can proceed with the next surgery. 4) Kaylie may be constipated and needs prayer for this situation. 5) For patience and understanding as parents to understand what she wants and is trying to tell us.

The Lord has been so good to us. So thankful for all the prayers, they have helped us get through these first two days.

Kaylie's surgery, day 1

Thanks to all of you for your love and support and especially for all the prayers. We are truly blessed!

Monday, April 18, 2011 at 8:00 a.m. had to be the hardest moment I've ever faced as a dad. I gave my little girl over to two people I had met only minutes before, and I watched them wheel her away to the operating room. I found comfort in the fact that the Great Physician was going with her!

Shortly after 12:00 p.m. we got the call that they were done and she would soon have a room in the PICU. Praise the Lord all went well and according to plan.

Wednesday, April 13, 2011

"My heart will choose to say, 'Lord, blessed be Your name!'"

Six years ago the Lord blessed me and my wife, LeAnne, with a beautiful, healthy baby girl. Everything was going great - the nurses were even impressed with her thick, curly hair and chubby cheeks. We were excitedly checking the milestones off the Baby's First Year calendar and peeking ahead to see what to expect next. But then, just five months into that calendar, something happened that we weren't prepared for...and we didn't even know what 'it' was.

I was at work on lunch break and talking to LeAnne on the phone. She had to put the phone down for just a few seconds, and when she picked up again she explained what had happened: she was holding Kaylie on her hip and suddenly Kaylie leaned backwards over her arm and wouldn't sit back up. LeAnne lifted her and held her up for a maybe 8-10 seconds, then she was back to normal posture and acted like nothing ever happened. We didn't know what to think of it, kept an eye on her and eventually forgot about it. Until two months later when it happened again.

The next day we found ourselves in the pediatrician's office and for the first time heard the word 'seizure' as a possible diagnosis for our precious baby girl. Tests were ordered and the journey began.

Soon these 'spells' (as we referred to them before we got the official diagnosis) were happening three or four times per week, getting longer, and involving more of her body. We finally got the test results back and seizure activity was confirmed and the first anti-epileptic drug started. It worked...for a couple of months. Then a new seizure type broke through. The doctor called them Myoclonic - they would come in clusters of up to 20 within two minutes and would jerk her head down suddenly, occasionally causing her to fall face first. This went on every day for eight months, and along with it some new terminology from the doctor: "She is developing refractory epilepsy" (a fancy way to say her seizures are difficult or even impossible to control with medication). Praise the Lord He saw fit to take the Myoclonic seizures away -before the doctors made her wear a helmet- and we have never seen another!

Over the last five years Kaylie has tried eight or more medications with very little relief from the seizures. The side effects have been frustrating and at times frightening. Three years ago she went through a battery of tests to see if she was a candidate for brain surgery - the possible cure. The information was not conclusive; the outcome was more medicine and more frustration.

This past December we did all the tests again, and this time the doctors (an entire committee of them) are confident they can help her through brain surgery. One statistic they shared with us: Roughly 5,000 people come to them annually with seizure disorders. They only offer the surgery to 40-50.

We take the next step of our journey next week. On Monday, April 18, Kaylie will be admitted for the first surgery of a two-surgery process. Please pray for Kaylie, the surgeons and all doctors involved. Please pray for our family and our emotional, spiritual and physical well-being. Through all of this, "My heart will choose to say, Lord blessed be Your name."

Blessed Be Your Name / Travis Cottrell (worship video w/ lyrics)

Thursday, April 7, 2011

To live is Christ (Philippians 1:19-26)

Someone has said: "It is easy to die for Christ. It is hard to live for him. Dying takes only an hour or two, but to live for Christ means to die daily. Only during the few years of this life are we given the privilege of serving each other and Christ...we shall have Heaven forever, but only a short time for service here, therefore we must not waste the opportunity." How many of us waste our lives on things that don't matter? We say that we would die for Christ, but the truth of the matter is we don't even live for Him on a daily basis.

The apostle Paul's attitude was "to live is Christ". He made Jesus the preeminent focus of his life. Paul did this on a daily basis. Paul said: "I have been crucified with Christ. It is no longer I who live, but Christ who lives in me. And the life I now live in the flesh I live by faith in the Son of God, who loved me and gave himself for me." Galatians 2:20(ESV)

May we as Christians have the same attitude as Paul "But I do not account my life of any value nor as precious to myself, if only I may finish my course in the ministry that I received from the Lord Jesus, to testify to the gospel of the grace of God." Acts 20:24 (ESV)

Saturday, April 2, 2011

If We Are The Body - Casting Crowns

Digging Deep Bible Study was in James 2:1-13

My Sunday School class met for our Digging Deep Bible Study and studied James 2. This was quite a convicting chapter as we discussed how the body of Christ is to be towards those who come to church.

We tend to focus on people who can offer us something instead of focusing on those we can minister to. The Bible speaks about God looking on the heart and we look on the outward appearance. Lord, help us to see people the way you see people. Help us to love people the way you do. Johnny Hunt says about this passage, "The way we behave toward people indicates what we really believe about God. A careful look at James' thoughts reveals that from God's perspective, the real issue is not wealth or poverty, but the condition of one's soul."

Do you and I show favortism in the body of Christ? James 2:9 says, "But if you show partiality, you are committing sin..." The Bible calls it a sin to do so. Lord, help us to not show favortism in the body of Christ.