There's No Place Like Home...again!

We woke up today in the hotel . . . wow . . .what an awesome nights sleep! No lights going on or off, no loud voices or alarms. Yep, we do not miss the hospital. They released us yesterday around 11 am and we opted to stay in the area just to make sure Krissy is doing ok before the long ride home. She slept very well and ate last night without getting sick. Unfortunately she is very, very swollen today. Her left eye is almost swollen shut and eating on the left side is almost impossible . . it pulls the staples to chew. She doesn't remember the swollen days from last time . . . but it truely is a repeat of February. She just doesn't want to scare anyone. She also didn't get to see herself bald last time because of all the wires and bandages. So, this is new for her (hey Jeff, you have more hair than Krissy right now . . .but she said hers will grow back out. .. lol). Boy will those hats she got last time come in handy!

We were able to use the wand and computer last night to download the information from the device to the laptop. That is actually kinda cool and Krissy says she can hear the static when it is downloading. We come back to Virginia on January 2nd for them to adjust all the technical stuff and for Krissy to get the staples out of her head. You know it is kinda scarey, her being a project, but at the same time exciting. We were reminded by many before we left the hospital about the amount of knowledge this device is going to be able to provide for the future. I just continue to pray that this is what Krissy needs to lead a normal life (hmm, the what again is normal, lol). Maybe I should just say a seizure free life.

I think one of the most difficult parts of the timing of this surgery for Krissy is missing some of the Christmas prep that is part of tradition for us. We always make my mom's famous ice box fruitcake . . . so guess what we will be doing tomorrow. And then the fudge and sugar cookies (like we need those). But part of the excitement is making them and giving them away. And I think this is important because of the wonderful memories that we have of the times we did this with my mom. Aren't traditions wonderful!

So, we are looking forward to a weekend of rest and enjoying Christmas! We have so many things to be thankful for and we are truly blessed! We are blessed with each other and so many friends and family!

We still have a long way to go with this adventure, but God is teaching me daily to take one step at a time. Enjoy life to the fullest and let Him handle the stress. Isn't our God awesome! He loves us so much that He wants us to have nothing to worry about. Just think how much He has to hold in His hands; because just my stress alone is enough for anybody. But He takes on all of our problems and issues....all our sins. And to think He came into the world as a tiny baby. How it must have hurt God so much to know His baby was going to one day have to die such a terrible death for me (and you). I know as a parent I cannot imagine giving up one of my girls for anyone . . . and yet God did for me . . . long before we were born. Christmas to me is such a time of reflection and a time of thankfulness! Please take the time to enjoy each other this Christmas season and remember Christ is the reason we celebrate!

Thank you all for your prayers and once again we ask that you continue to lift us up to the throne of God...as we do not know what the future holds.

One of my favorite Christmas shows is Charlie Brown (that I watch all year long) and I love to hear Linus explain the true meaning of Christmas.

"Today in the town of David a Savior has been born to you; he is Christ the Lord. this will be a sign to you; you will find a baby wrapped in cloths and lying in a manger." Luke 2:11-12

I had a dream last night about the children of the church singing a beautiful praise chorus . . . I woke up singing this song...

"I am madly in love with you, yes I'm madly in love with you. Let what we do in here fill the streets out there, let us dance for you, let us dance for you."

Krissy and I decided the most important thing we can do is continue to give God the glory for the good the bad and the ugly. . . and share what God is doing in our lives. . . and love Him madly and always continue to dance for God!

Whew...what are we doing here?

I realize I shared with you all last night that Krissy was looking good and all was well . . . and then the second day arrived. Don't get me wrong, she still "looks" great; no swelling, no black eyes, and great color in her skin...but she has not felt real great on the inside. I forget so quick the effects of anesthesiologist (or something like that - lol) . . . you know, the meds that put her to sleep. She has had a very long day, unable to keep anything in her stomach (meds, water, and definitely food). So, therefore, all meds for pain and nausea have to be through an IV or shot. So that also makes her very happy! And have you ever noticed that once the nurses give you medicine for the pain and tell you to try to sleep they wake you up every few minutes to see how the pain is and if you are able to sleep. (Things that make you go...hmmmm.) And that pain chart they teach you in the hospital . . . rate your pain from 1 to 10...10 being the greatest, and then when you actually have pain at the level 10 you get no more attention or pain medicine than when you have pain at the level 6. (Once again, things that make you go ...hmmmm.)

Ok, so I am done whining now . . . back to Krissy. Yes, her pain has been very severe tonight and it has been difficult for them to find the right combination of relief. So, the best medicine I know of to give her the relief she needs is PRAYER. We know that works!

Today was training day for the laptop, wand, and magnet to help record information. Only problem was Kristina was too sick to realize what was going on. So, Jess, Rob and I learned everything we need to know about the device and how to use all the "gadgets" . . . and of course Jess took notes for me! For the next 2 weeks to a month the device that has been implanted is going to be "learning" all it can about Krissy's brain and how it works (types of seizures, where they come from, etc). So, every time she has a seizure we are to run this magnet over the area of her head where the device is. This marks the seizure on the eeg that is continuously recording. Then we have a wand to use (the wand is called Jerry - because it looks like a mouse - and the device is Tom . . . you know the old cartoon of Tom and Jerry . . . mouse and cat. . . which by the way was Kristina's favorite cartoon as a kid) and we hold it to her head, where the device is to download into the laptop all info stored in the device. Then weekly we send all this info from the laptop to the Doc via the phone lines. So, now have I totally confused you! lol Anyway . . .that's what we have been doing today . . .and hopefully you get a feel of what is to come. And then Kristina asks me . . . "now what are we doing here??"

On a serious note . . . even though she feels rough today and is questioning why . . . .and I am totally in a whining mood . . . . we know God is still on His Throne and still in control! He never promised us a bed of roses! We know Kristina is in God's hands and He loves her, therefore, we have nothing to fear.
And we know that in all things God works for the good of those who love him, who have been called according to his purpose. Romans 8:28

note . . . to all of you that may be in the medical field . . . I in no way am trying to disrespect the work that is done by the many doctors and nurses that have cared so diligently for Kristina . . . we have the utmost respect for what they do . . . .and have many that are our favorites here!

Phase One ...Complete

What a long day! Krissy was told to be at the hospital at noon, however she was not called back for surgery prep until 3:30 pm. Whew...talk about testing patience. She was a real trooper...and so was all our support team, as everyone waited to eat so we would not be eating in front of her (lol).
During the prep time, with all the questions 900 times and different faces of all the folks that would be a part of the operating room staff, Krissy told the doc that she wanted him to just shave all her hair off. Of course, for the MRI they had already done a real nice job of strategically placing bald spots all over her head! The doc was a little surprised, but Krissy insisted it was much easier to grow it all out even then to look like she had the mange.
Surgery began at 4:22 pm and the Doc called us in the waiting room around 6:30-6:45 pm. He told us she went through the surgery very well and he felt very good about where they placed the electrodes (as he put it, there was alot of sensitive activity in that area). Then our patience was really tested...as we did not get to see her in recovery until 8:45 pm.
She was very tired and they had just given her something for pain . . . but she looked great! Her first question was about the type of headdress they had put on her head. . . "the turban look" or not.
After we all had a few minutes to visit she was back to her nurturing self and insisted we all go to the hotel and get a good nights sleep. Because she was going to sleep! They were keeping her in ICU last night and we are now headed that way to see her.
Thank you all for your prayers and love! And thanks to Rob, Daniel and Pastor Sandy for the support for us Noa girls here at the hospital.
When you talk to Kristina. . . ask her about the two ladies we freaked out in the elevator yesterday morning...haha...always good to have a little comic relief now and then!

Finally, be strengthened by the Lord and His vast strength. Ephesians 6:10

Here We Go Again . . . Take Two!

Here we go again . . . . "take two" of an enormous adventure! It is Monday morning and we are sitting in the hotel . . . patiently waiting (not!) the time for us to arrive at the hospital for surgery. We have to be there for surgery prep at noon . . . and she will probably go into surgery by 2:00. So it will definitely be a long day. The hardest part is Krissy cannot have anything to eat or drink since last night at midnight.

Her spirits are high . . .and she is very optimistic about this surgery. She feels the timing is right and God has her prepared for this day! Your eyes saw me when I was formless; all my days were written in Your book and planned before a single one of them began. Psalm 139:16 After the many months of not knowing what was next with the research program . . .we are finally back on target. The surgery today will be to install the device for the Neuropace. Then we will go through the training on how to use the wand and laptop that information will be downloaded onto from the device in her head. Wow . . sounds too wild to be true! But, ultimate goal is to stop (or even reduce would be good) the number of seizures. And boy is she ready for that.

Her surgeon told us he would like to have us home in 4-5 days, by Christmas . . . .but the way we look at it . . . what a wonderful Christmas this will be to have the possibility of Krissy's seizures being controlled. We know God is in control and to Him we give the glory for all things!

We thank you for all your prayers and we ask that you will continue to pray for this journey we are on!

The Journey Continues

It has been almost four weeks since we left the hospital (and her hair is growing back) and Krissy had her first follow up visit today. She had a appointment this morning with the surgeon. He was very excited about seeing how she is healing and was almost "giddy" about some of the upcoming posibilities. The first thing he shared with us were some pictures...of the CT scan done with the grid in place and of her brain during the surgery. Yep, color pictures of her brain! He did ask to make sure we would not get sick when he showed us . . . however, he was thrilled to explain them to us! The pictures showed where the grids had been placed and he was able to show us exactly where the seizures were coming from. We were also able to see the scar tissue that has been the big issue. It showed up as a grey mass in the midst of so much red tissue. It was fascinating! (sorry the doc didn't let us have the pics to show)

The doctor shared that the UVA team will be having a video conference with the Neuropace team (in California) tonight to discuss Kristina. He felt very comfortable that she was a candidate for the neuropace and all the mapping and work that was done during her time in the hospital was now going to pay off. The team at UVA will be showing the neuropace team where they feel the device and electrodes will need to be placed to be most effective. On the picture of the brain he was able to show us exactly what the procedure will be. He told us there will be electrodes placed during another surgery and the device will replace a small square of her skull underneath the skin (kinda like a metal plate.) We should hear from one of Krissy's doctors tomorrow or Monday with a game plan.

We are feeling very good about this step and feel God is leading us in this direction. Kristina has not had a seizure since we left the hospital . . . however, the doctor told us this was a kind of "honeymoon" stage that sometimes happens after surgery. And wouldn't you know it . . . .she had two small glitches (a type of seizure where she just pauses for a few seconds) on our way home today!

Upon checking the mail today when we arrived home there was another appointment in Va on April 10 with the research team. So, I guess we are headed back pretty soon. I will keep you all posted as we receive news.

Once again, we thank you all for your prayers and concern during this journey in our lives!

There's No Place Like Home

It is Sunday morning and we are waking up in the Holiday Inn of Charlottesville, Va. Yeah!! We were "released" from the hospital yesterday afternoon. . . and yes we are both a little apprehensive. . .but we are out! The surgeon had suggested that we stay in Virginia last night just to make sure she has no complications over night. She did great! She is definitely not up to par yet . . .but hey . . she just had brain surgery (lol).

We are headed home later this morning. She is still on lots of meds and still a little shakey but we did do some walking around yesterday and ate dinner out. She was very excited!

We should be home later this evening and she has asked if I would let everyone know that she cannot wait to see everyone, but to give her a day or so before expecting her to be very social. Getting home and sleeping in our own beds is all we can think about right now! We will be at home for a few days before we jump back into the fast life of Spring Lake.

Krissy has completed one of the steps towards becoming seizure free. No, it didn't happen exactly like we had hoped, but we have lots of great doctors working on her case and we feel confident that God can use each of them in a mightly way. So, we will begin a new adventure the end of March . . . .working towards neuropace.

God is Still at Work

It has been a very interesting day with lots of events going on with Kristina. She started her day off very well and mid-afternoon she began to experience something new. While on the phone talking her vision became blurry and her right hand was numb. She was unable to continue talking and could not form her words. When she shut her eyes they began to flutter. This happened several times during the course of the afternoon and evening. She had one of the events while one of her doctors was standing in front of her bed. He felt this was a new type of seizure she was experiencing. With so much trauma to the brain he felt the brain has probably restructured how the seizures happen. We have had several doctors check up on her during the course of the day and they all agree that it is a seizure event. Now that she has learned to relax when it happens it goes by much quicker, however the first couple of times today she became very frantic and scared both of us. But all is good! We will adjust to this too.

The doctors did share with us today that Kristina is being discussed with several different boards (epilepsy board, neuropace board, surgery board) and they are all looking for the best solution for Krissy's case. That does give us comfort that they are working hard to find a way for Krissy to be seizure free.

There is still no doubt in my mind that God brought us here for this time and has a plan for Kristina. I know He is working through the doctors and nurses and is working in us.

I have had the chance to meet the family of my newest roommate. Our roomie is an 11 year old girl that is having seizure events (along with some other medical issues). She was born in China and was adopted by her mom here when she was 5 months old. Her mother is a single (never been married) licensed counselor that primarily works with children and their families. The mom was telling me today all the difficulties she had in finalizing the adoption and about her trip to China to receive her little girl. She told me she knew it was of God that this was the child He wanted for her because she had already selected a name and when she was receiving the baby a man told her the child's Chinese name. The name she selected meant "by the sea" and he told her the Chinese name meant "by the sea". She said this was no coincidence in her book . . .because there is normally no reason for them to have named the child in China . . so it was very unusual for that to happen.
This is their first visit to the hospital for her daughter and they are in the very beginning stages of her seizure and EEG irregularities. She told me she felt we were together so she could learn from us what to expect and how to deal with the issues they may face in the future. She listens to how Kristina and I deal with these new seizures and what the doctors talk to us about. Then she asks me questions. I have tried to be very encouraging to her, as I know the fear she must be feeling at this new stage in her daughters medical conditions. Yet, I tell her alot about how we have handled the years of seizures and how God has brought us through it.

I sit back tonight and think about all the people that God has placed in our path and all the things I have learned about life and love from each of them. We have made some very good friends; linked together not only by our siutations and time in the hospital; but by the love of Christ. I received a call from Rusty (his and Nancy's mom was the one with brain cancer) on the day of Krissy's surgery. He called to let me know he and his church were praying for Kristina and our family and would continue to keep her on their prayer list and check up on us until she was through with the entire ordeal to rid her of seizures. I had already seen Nancy the day before and she shared with me that her mother had died during the night. Her brother was already back in Florida and they would be having her funeral there. In the midst of all that was going on in their lives he still thought to call and check on her. Amazing how God uses us if we just allow Him to.

Once again, I thank all of you that have been praying for Krissy and all the encouraging words, and notes and cards. May the God who gives endurance and encouragement give you a spirit of unity among yourselves as you follow Christ Jesus, so that with one heart and mouth you may glorify the God and Father of our Lord Jesus Christ. Romans 15:5-6

Beginning of Recovery

Kristina has done very well today with the beginning of the recovery process. She was moved to her room at about 3:30 am this morning . . .after she had a CT scan at 2:30 am. The surgeon said the scan looked good and everything looks fine.

She has been suffering with headaches today and they are gradually trying to wean her off the IV pain relievers and having her take them by mouth. She is still on the steroid to keep the brain from swelling. She has been eating well today (with no vomitting . . yeah!) and she was able to take a walk down the hall and look out the windows today. She can actually even go to the bathroom alone without pulling a long cord behind her!

We are hoping to get to go home real soon! They want to make sure that there are no complications and she is feeling better before I take that long ride home with her. She has many, many staples in her head and it is very sore! She will experience some bruising along the left side of her face and eye as well. She cannot really smile today without alot of pulling and pain.

But...overall we are excited that she is doing as well as she is! We do not know the details as of yet about the neuropace . . . we need to get over this step first. "They that wait upon the Lord shall renew their strength . . " Isaiah 40:31

I am going to add some of the pictures of her from this morning. We talked about whether we wanted to put a picture of how her head looks on here, but she felt it might help everyone prepare for how different she looks. As hard as it is for me to look at the staples and cuts on her head . . . she is still very beautiful to me! I am very proud of her for her courage and strength!

2nd Surgery Day

It was a very long day as we waited in anticipation of the upcoming surgery. One of the eeg techs came in to remove all the wires and connections from Kristina. She felt like she was easily 50 pounds lighter once all the "stuff" was removed. Heather took a picture of Paul working on Krissy that she will later post for all to see. Originally it was planned for around noon (she was 3rd in line for the operating room). However, she was not called in until 3:30 pm and finally went into surgery around 5 pm. She was out and moved into ICU about 7:30 pm. The doctor told me the surgery went very well and he was able to get some more pictures of the grid and mapping for future use when it comes time for the neuropace. He feels the recovery will go well and quickly.

I was able to see her shortly after surgery and she was in alot of pain. She woke up alot quicker this time; before they had all the pain meds in place. She was also awake for the air tube to be removed from her throat . . .so she was not a happy camper. They will be keeping her in the ICU tonight because of how late she came out of surgery and will be moved back to her same room tomorrow. We are still uncertain about how long we will be here . . . depends on how quickly she starts feeling better. We are looking forward to getting home and being able to sleep for days! (lol)

We appreciate all the love and prayers for us! We have felt God's hand comforting throughout the day!

During our time of waiting for surgery, we were playing games with Jess, Rob and Heather (who came to be with me during the surgery). We also had the opportunity to meet our newest roommate, an 11 year old girl who is having some type of "event" that may be related to seizures that needs to be video monitored. I had a chance to chat with her mom and discover more about what is happening with her daughter and share Kristina's experiences with the doctors here at UVA. While the gang went out walking for awhile, I was able to share with this mom all the fears, uncertainties and positive experiences we have had since we began to come to UVA with the goal of finding a solution (or treatment) for Kristina's seizure disorder. I am once again amazed at how God put us in the right place at the right time to give us both the companionship with something in common.

Kristina has been a real "trooper" through all of this and I am very proud of how her faith has continued to make her strong! Even at those times when fear tries to overwhelm her...she relies on God for the strength and comfort only He can provide.
The Lord is my strength and my shield; my heart trusts in him, and i am helped. My heart leaps for joy and I will give thanks to Him in song. Psalm 28:7

Surgery Day

Today is the day for the surgery. They will be taking her in probably after noon and removing the electrodes. She is getting hungry already; when you get used to three meals a day, like clockwork, it makes it difficult. She is very ready to get these wires out of her head and get as back to normal as possible.

I am attaching some pictures we took yesterday after they re-wrapped her head. You can see the wires coming out of her head and I took a picture of the staples that are holding her head together. That is one of the nurses assistants, Crystal, and Krissy is talking on the phone with Cheryl. I will update you later today.

Just a note . . . the food nutritionist came by (of course with no food for Krissy) but wanted to wish Krissy well with surgery. She took her hand and said, "just remember, the Lord is my Shepherd, I shall not want."

God is Comfort

I know many of you have shared with us in the disappointment that this hospital visit and surgery has turned into. However, Kristina is doing very well with the news. Yes, she too is disappointed but feels that maybe Neuropace is what God wants for her, and she trusts Him to guide her through the next steps. Our new roommate's daughter asked Krissy today if she was scared when she went into surgery. She smiled and told the lady that she just went on without thinking about it a lot and that made it easier. Isn't that what God wants us to do? Who of you by worrying can add a single hour to his life? Matthew 6:27 Go with the flow...let God take charge. And she has done unbelievably well with that! We talked today about how God has been preparing us for awhile for this "adventure" and how he knew when we would be able to handle it. He knew that a few years ago we were not strong enough in our faith to have been through so much. So, I truly believe His timing is everything!
The morning started off pretty good....even Dr. Taft came in and told her how much he loved seeing her smile after such a scare yesterday. However, as the day went on it became another very rough day for her. She had another bout with the swelling and became very unresponsive to us. They increased her steroids and cut off food and fluids for a few hours in case the doctors needed to take her into emergency surgery. But, she pulled out again and began to feel better. As of now the surgery is still on for Wednesday morning. It has definitely made me realize that I want to be here as long as it takes for her to be in the clear before I bring her home. But boy do we want to go home.

On another note, we have a new roommate. She is an older lady that has had a shunt put into her brain. Her daughter is here staying with her in the room, as she is her primary care giver. The older woman asked who was over here talking and wanted to meet us. It turns out they are Christians and her grandaughter is a nurse at Cape Fear and lives in Stedman. We have already had a wonderful opportunity to tell them Kristina's story and talk about our faith. God is good . . . and He continues allowing us to meet brothers and sisters in Christ every day!

This passage was passed on to me from a dear friend; a great day to receive it.
2 Corinthians 1:3-5 (The Message)
All praise to the God and Father of our Master, Jesus the Messiah! Father of all mercy! God of all healing counsel! He comes alongside us when we go through hard times, and before you know it, he brings us alongside someone else who is going through hard times so that we can be there for that person just as God was there for us. We have plenty of hard times that come from following the Messiah, but no more so than the good times of his healing comfort - we get a full measure of that, too.

God is Our Strength

May our Lord Jesus Christ himself and God our Father, who loved us and by his grace gave us eternal encouragement and good hope, encourage your hearts and strengthen you in every good deed and word. 2 Thessalonians 2:16-17

Each of you have been a great encouragement to us through your letters, calls, and most importantly prayer. Our Father in heaven has been our source of strength daily. I do not understand how people make it through the day and the difficult times (as the last two days have been) without Christ! It is unbearable to think of how many people go through the tough times without an understanding of the love, peace and strength that only God can provide.

Last night and this morning were probably the most difficult time Kristina has experience thus far. I noticed yesterday that she was just not herself, not responding to Jess and I as she would normally. She also complained a great deal more about her headache and nothing seemed to ease it. It was also very difficult to have to tell her about "Grandpa John" (as my girls so affectionately called John - who went on to be with the Lord last night). During the night she had three seizures and the headache continued to get worse. The surgeon came by this morning at the crack of dawn and upon hearing about her night and the headaches sent her to have a CT scan. They discovered that the side of the brain with the grid was swelling and pushing on the other side of the brain. They immediately put her back on steroids and were discussing emergency surgery to remove the grid if the swelling did not go down quickly. During this time, due to the severity of the headache, she began to throw up again. Once they got her medicated and the pain eased she felt better. Fortunately the steroid began working and she began to feel much better.

As of now, the doctors have decided not to go forward with the anticipated surgery to remove the scar tissue. They have discovered from all the tests, maps and gridding that the bad part is too close to the good part and would be too much of a risk for her. This has been terribly disappointing to us, however we know God sent us here and He is not done with her yet. The doctors want us to move on to looking at the second option which is the Neuropace (a type pacemaker for the brain). They feel the tests and the grid were not in vain, as all the information will be used for the placement of the neuropace electrodes. Unfortunately this procedure cannot be done at this time. Krissy will go back into surgery on Wednesday, Feb 28, to have the grid and wires removed. She will then be here an additional 7-10 days for recovery before we are able to return home. It will be a few months before we will return to have the neuropace installed; the brain needs to heal fully before the next step. As you can see it has been a difficult couple of days with alot of information and processing for us to do.

As we continue in our journey and face the disappointments that have come our way we still have hope. I was also reminded today that we do not have to always be so strong. God is our strenth. But He said to me, "My grace is sufficient for you, for my power is made perfect in weakness" Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. 2 Corinthians 12:9

Day 13 and Counting!

I apologize for "slacking" off on keeping you posted...actually there has just not been a whole lot to tell in the last couple of days. We are on day 13 here at the hospital and when the doctor visited this morning he told us they really need to see more seizures. Go figure, 6 days without her seizure medicine and she has only had 3 seizures . . .total. . . and at home she has many in any given day. So, we are somewhat baffled as to what is keeping the seizures from happening. She has not felt real well today; severe headache, wanting to sleep more and looking a little pale. The nurse says all her vitals look good, so maybe it is just downright homesickness.

The doctor has shared with us that they are still concerned about doing the second surgery and removing a part of her brain. They need to see some of the other seizures to make sure that it is possible to take out the seizure area without damaging a good part of the brain. They do not want to leave her unable to use her arm or something of that nature. I am very thankful that the doctors are being so thorough, however it is disappointing to think that this may not go the way it was originally planned. One of the doctors did remind me that if this surgery is not possible that Neuropace is still going to be the other option. I have to keep reminding myself that God is in control and He does have a plan for Kristina and it will all be worked out in His time. The hardest part is knowing that Kristina may have to have a second surgery with no relief from the seizure disorder. We would not be able to have Neuropace implanted until a few months later. We are staying optimistic! Please continue to pray that the doctors will see what they need to see to make the wisest decision. You know I heard on a Christian movie last night that "if you want to make God laugh, tell Him your plans." I have thought about that alot today . . . cause things have not quite fallen into my nice little box of plans.

Last night I had the opportunity to sleep in a hotel bed while Jess stayed with her sister. I am very thankful for the chance to get a good night's sleep and be able to stretch out! It was very good for the three of us to be together for the weekend. We are so used to being a threesome!

We had some good friends visit us today, and that was a great joy! We had not seen them in a very long time and they actually now live two hours away from Charlottesville. We realize how hard it is for anyone to come up here due to the distance . . . so it was a great treat for us!

I was reading the book "Hugs of Comfort" today before I took it to our friends up on the eighth floor. There were many things in the book that stood out to me . . . .but today this touched my heart.
"God may be invisible, but He's in touch. You may not be able to see Him, but He is in control. And that includes what you've just lost. That includes what you've just gained. That includes all of life - past, present, future." ~ Charles R. Swindoll

An Encouraging Word

Krissy had a seizure this morning at 1 am while she was still asleep. It was a very hard one and the doctors are pleased to have this information. Of course, she is having a very laid back, drowsy day with a headache. She will probably sleep most of the day.

I wanted to pass on something that Mary wrote on the day of Kristina's surgery. While waiting she wrote this for her church newsletter. I know Krissy and I enjoyed reading it and we need all the encouragement we can get.

I am amazed at how God so often ties together His Word, proclamation, and circumstances to teach us and grow us. As I write this, I am sitting in the waiting room of a Virginia hospital as a very close friend is in surgery. This friend has lived her entire life with a condition which has limited her lifestyle, and is in the process of a series of two surgeries which should enable her to do all the things she would love to be able to do. As I sit here awaiting news, I think of our recent readings in Job. My friend, like Job, has been told, “If you had enough faith, if you were good enough, God would heal you.” She has questioned God “why?” She has awaited His answers. But, greater still, she has worshipped. And she has been an unbelievable minister to those around her. God has not only refined her in her troubles, but he has refined those around her as well. God has taught me so much through knowing her. He has taught me faith, patience, compassion, and perseverance. I think of the people to whom she has been able to be a witness because of her condition, and I know that God’s word is true and that He can and does work all things together for good for those who love Him.

Teaching Us

I know God has us here for a reason...we may not understand it all, but we try very hard to be open to God using us no matter how we feel. We have now been here 10 days and we are both feeling it. However, people on the floor have started bringing their prayer requests to us and telling us their stories.
You know, everyone has a story. Sometimes we try very hard to keep our "stories" to ourselves for many different reasons. One of the things God has shown Kristina and I throughout her "journey" is that God uses our stories. I have been sharing some of the stories that we have heard and experienced since we have been here, and the stories continue to come. I have several new prayer requests to share with each of you, as I know people are praying for Kristina and we share how our prayer support team petitions for us daily! One of the PCA (patient care assistant) ladies on our floor has shared about a 12 year old girl (a close friend of her family) that is in the hospital here with sickle cell, and she wanted us to share her name (Shannon) so we could be praying for her specifically. Our most recent roomate is here to be video monitored for seizures. She has been having some kind of "spells" for the last seven years. She has asked Kristina and I to put her on our church prayer list as well. She has alot of issues in her life and wanted us to pray for her and her family. Our nurse tonight has shared with us that her youngest daughter just died in November in a car accident and she has her 4 year old granddaughter. She is still grieving and trying to raise a small child again. My heart goes out to each of them. Kristina and I talked about how important it is for us to try to be an encourager in each of these situations.
We also had a visit from the brother and sister that are dealing with their mother being here and basically waiting for her to die. They came by to see us and be an encouragement to us even as they are hurting so deeply. Our faith and love of God is a common link that has brought us together. We laughed together about our AWANA programs and our Wednesday night class duties...and our love for what God has us doing for His kingdom.

I guess you would love to hear about Krissy's testing now. Well, it started off a little rough this morning. The doctors brought in a machine that was suppose to stimulate the grid areas in her brain and check out the good areas. However, after about an hour of trying to hook it all up they discovered one of the connections was loose and was going to have to be repaired. They were not sure if they would get it repaired today or if the test would be postponed to tomorrow. Around 2 pm the doctor came in with the machine and said he didn't think they had really done anything to the machine but tightened a connection, so he wasn't sure if it was going to work or not. Once he got it all hooked up and turned it on it worked. He seemed a little surprised. (Of course Krissy and I knew we had been praying all afternoon for the machine to be fixed!) Two hours later the tests were complete. During the testing as they stimulated different grids (areas in her brain) her arm might go up, or her fingers wiggle, etc. It was pretty interesting to watch. The doctors are hoping to be able to analyze the data and they will be meeting with the surgery board on Thursday afternoon. They would still love to see some more seizures and that hasn't happened yet! Her doctor told us by Monday (or Wednesday at the latest) he would let us know how all the data came out and where we stand with the next step. Whew! Another week of just waiting!
being strengthened with all power according to his glorious might so that you may have great endurance and patience, and joyfully... Colossians 1:11

Waiting & Waiting

It has been a very long day! We are once again in waiting mode. Kristina is currently taking no seizure medicine and still hasn't had another seizure. However, today she has not been as cheerful . . . has slept alot more and been groggier all day. I guess because of the big seizure last night. I did get a chance to talk to the doctor again today and he once again explained the reason the neurology team wants to hold up on surgery a few more days. In looking at the data from last nights seizure they feel the seizures are still coming from that area of the brain. Pray for wisdom for the doctors as they plan the surgery on Thursday.

We are getting very restless. Days are running together and Krissy is beginning to feel the incision tighting up as it heals. It is very uncomfortable for her. She is also on her fourth IV and it looks like this one will have to be changed tomorrow. I guess she is beginning to get tired of all the needles, and IV's and meds . . . . and who can blame her. Once again I am sure some of it has to do with our expectations and being disappointed with the change in the sequence of events.

Thank you to all for the calls and cards! She gets very excited when the mail is delivered!

I wanted to ask again for prayer for the family I met here in the hospital . . . our first roommate and the family. The older woman has cancer on her brain and they are going to talk with the family tomorrow about stopping the radiation. There is nothing that can be done any further for her. I spoke with the daughter tonight; she is devestated. Her mother knows the Lord and she feels comfortable knowing where her mother will be, but the grief in losing their mother is very difficult. The son and daughter (and grandchildren) need strength and comfort at this time that can only come from God.

YEAH!!

At 12:45 pm (Monday night) Kristina had a gran mal seizure! One of the very few times we have been excited about a seizure. The doctors are very thrilled about it and are hoping to see another one today. On tomorrow (Wednesday morning) there will be another mapping test on her brain. This test will be looking for the good areas of the brain where the other looked for the bad areas. And then on Thursday there will be a conference with the surgeons, neurologists and any one else that knows about this stuff to discuss the plan. We should know then more about the new surgery date. Yes, it is disappointing that our time frame has been moved back . . . but, I want them to be sure of what they are doing after this many years of seizures. Please continue to pray for the doctors and that Krissy will have a few more seizures. Wanted to put a short update about our overnight events.

Pictures!!

Here are some of the pictures we have taken here!

Postponed Surgery!

Yesterday was another day with no seizures! And so far today we have seen nothing Patience is something that we both struggle with and finding things to keep ourselves entertained is even more difficult. We have to keep remembering that God is in control and His timing is what is important. For whatever reason, it looks like the second surgery will be put off a few more days.

The doctor did share with us that the test they did last week showed them some valuable information. The scar tissue is a good distance from her motor skills area and they seemed very pleased. They also shared with us that they are recording seizures that we are not seeing, however they need to get video of some of the bigger ones. The doctors also want to get some more mapping tests done this week...therefore, postponing the surgery that was scheduled for Wednesday. It was somewhat difficult not to be discouraged, realizing that "my" schedule had been changed. Hmmm . . . . some of life's lessons. And keeping in mind that this whole time and sequence of events is going to be a big change in Krisina's life! So....we will be patiently sitting here in the hospital as long as it takes.

Kristina is definitely recovering from the first surgery very well. She is able to stay up all day, play games, and read a little. Jess and Daniel got into town yesterday afternoon and left today. We had a great time with them here. We also had Cheryl and Hannah come up for the day. It was a great time of family and friends. The visits this weekend have definitely made the time go by much quicker!

Sunday morning we had a patient transport employee come in to take our neighbor to xray. She stopped to chat with Kristina and I. She told us about a 90 year old lady that God had put her with three times in the past couple of days. She felt it was definitely divine intervention. She had an opportunity to share her faith with this older lady and her daughter, however the lady has now informed her on the last visit together that she would not be able to convert her to her faith. She was not interested in God. It saddened our hearts to hear such denial of God. When the PT employee came by to bring our neighbor back I gave her a track and told her that if God placed her in this lady's path again to leave this with her and her daughter. We also decided we would all commit to pray for this lady . . . .that God would prepare her heart for His Son.

I am finally able to place some of Kristina's pictures on here for all to see. See if you can tell the difference in the first one and the later one. The first one has the swollen eye and face (not when it was at it's worst . . . but still visible). Some of the others were today. There is a picture with "Flat Stanley". He is trying to go all over the world, with Virginia being his first stop! Cheryl will be putting him on a plane tonight for Iraq. It was great to meet "Flat Stanley."

The Waiting Has Begun

NO seizures! It was the kind of day we pray for when we are at home; that she would have a seizure free day. Well, no seizures again today. The doc has cut her seizure medicine down to 200 miligrams froom 600. So he feels it will happen. They need to see some seizures before they can make any final decisions. There will be another test done on Monday where they map out some other features of the brain that will help them in the process. So we are just on waiting mode.

Kristina is continually improving. She is feeling much better. She is able to sit up more and work on word find puzzles and watch tv. We have done some reading as well. We have enjoyed the phone calls from so many dear friends (and Kristina is now up to talking). We had a visit today from some very dear friends (part of our close church family)! The nurse today was very surprised that they had driven five hours to visit with us for such a short time. She stated that Kristina must be very special to many people. Our nurse said that was truly the love of Christ reflecting in their actions. I think it is so awesome when others can recognize Christ in us! We had a great visit with lots of wonderful surprises! It was like having a little bit of home come to us! It also made our day much more exciting and the time go by faster!

My friend left me a book that she felt would be good for me to read to Kristina. The Tree that Survived the Winter by Mary Fahy is the name of the book. It is an adult fable for people that have come through difficult times. The story is about a small tree that survived the winter, and having come out on the other side victorious still needed to reflect on the difficult winter, the memories of the hardships that were endured, seemingly alone. It made me realize how important it is to reflect on the difficult times to discover what lessons were learned during those times. The following is my favorite part of the book that I wanted to share with you:
"You have survived the winter because you are, and were, and always will be very much loved," said the sun. "For that small place deep within you that remained unfrozen and open to mystery, that is where I have made my dwellling. And long, long before you felt my warmth surrounding you, you were being freed and formed from within in ways so deep and profound that you could not possibly know what was happening."
"......I .....I believed." she (the tree) whispered, noticing that the words seemed to come from that inner space deep within her.
"Yes, you have believed," sparkled the sun. "You have always believed, and that is what enabled you to grow. For had you not kept faith with me in the center of your being, you could not have blossomed into you."

God knows what is going on, He knows our frustrations about the lack of seizures....but He also knows what the future holds. He has led us to this point thus far and Kristina and I have to believe that whatever happens in the next few days is in His hands and is exactly what He desires for us.

Now faith is being sure of what we hope for and certain of what we don not see.
Hebrews 11:1

Return of the Coneheads

We are on day 5 of our hospital adventure and "the natives are growing restless." Kristina has been much better today...and much more talkative. We have worked on word-find puzzles, watched tv a little, and read. Her headaches seem to be getting somewhat better, allowing her not to stay on so much percocet. She is still getting steroids to prevent swelling of the brain, sugar checks and insulin (due to the steroids), and an antibiotic through out the day. Boy, she is really a trooper when it comes to the poking and sticking and shots in her belly. Don't know that I would be that brave.

We are now waiting on seizures. Can you believe it...on the way to the hospital on Sunday she had three seizures in the car and now, here at the hospital, she isn't having any. Excuse me, she did have one yesterday, but they need alot more to make sure they get the info they need.

This morning some people from the Neurology department came in to do a test on her. They unhooked all the wires from the video monitor and hooked them up to another computer system to see which electrode in the grid was over the motor skills and sensory areas of the brain. I asked alot of questions as they began their work and found out there are 138 little wires with sensors connected inside her brain. Can you imagine having that much "stuff" extra in your head. They hooked them to the machine 12 at a time so they could collect data for the doctors to examine. It took almost two hours for this test to be completed. Needless to say, Krissy and I both became bored with the process and took a little nap as they worked. They told Krissy she was one of the easiest patients they had ever worked with. Hey, she didn't flinch. . . that was while she was still on the percocet. When the doctors came by he explained that he would now have to spend a couple of hours analyzing all the data from these tests . . .and then once they have some seizures recorded he could compare the information. Then the surgery board will make their final decisions on where we are at. So....pray for seizures!

The team of doctors that came by today were impressed with how good Krissy is looking. Alot of the swelling is going away and her color is good. They did crack some jokes about her head wrap. They were saying it was one of the best head wrappings they had seen. They also started comparing her to the coneheads that were on that movie awhile back. They called her Connie Conehead and told her to just tell people she was from France. (lol) The funniest thing, however, is when some assistants came in the room to take our new neighbor to the MRI department they took one look at Krissy and told her she looked like one of the Conehead family. I can't wait to get the picture on here for all of you to see. (It will be a few days, cuz I left my camera cord at home and can't download it onto the computer, sorry)

I am now feeding her chocolate . . . trying anything I can to trigger seizures. So, prayerfully tomorrow they will see what they need to and be able to start making some decisions.

Yes, we are getting bored...but hey what's a few days when we are working on a life time change. The sacrifice is nothing in comparison! God tells me He has a plan for His Kristina. "For I know the plans I have for you ," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

There are Angels Among Us

Krissy continues to improve daily. She woke up this morning with her eye swollen shut again and the left side of her face swollen, but it went down pretty fast today. She could fully open her eye by this afternoon. She ate well today, lots of solid food, which helps her regain her strength. She has felt well enough to sit up more today and talk more. The doc came in today and said things were looking good; now they need to see the seizures. He also reminded us that even though the operating room was reserved for Wed, Feb 21, there were lots of things to consider before the surgery. He didn't want us to get discouraged if they had to push the date back. So now, all depends on the seizures and them getting the information they need. We came here with the understanding that we would be here awhile, so we are not going to let any possible setbacks discourage us. We feel all will work out and surgery will happen. More importantly we understand that God is in control and we want all to be done according to His will.

I had a wonderful surprise today. A good friend of mine from Divinity School, that I had not seen in a very long time, drove six hours to visit. She made plans to stay in town tonight and I had the opportunity to get out of the hospital for a couple of hours today and go to her hotel for a shower and to do laundry. We also had the chance to catch up with each other over lunch. It was a great break that I needed desperately, and Kristina slept the entire time. She probably enjoyed the break from my talking as well :)

Today our little girl next door went home (her legs were very happy). They found no signs of seizures. She was here because of irregular EEG tests. I had another opportunity to talk with her this morning, and more importantly her father. He got very emotional telling me about his 7 year old son that is autistic. He talked about how people have always been fearful of his condition and have almost shunned their family. His son does not talk and goes to a school for autistic children. I enjoyed talking with him and telling him about some of the autistic children I have had the priviledge of knowing. We got a chance to talk about God's plan for each and every one of us and how He uses us each in a special way. I shared Kristina's life verse with him from Psalm 139. He assured me he would be praying for Kristina and I assured him I would pray for his family. His daughter, our roomy, told me this morning that her brother had thrown up last night at home. She shared with me that she believed he was just very nervous about her being in the hospital. She was glad to be going home and seeing him today. What a joy children are and isn't it amazing how their little minds work. Last night her daddy read her the story of Jesus praying. She told me that was her favorite story; that even Jesus prayed.
"Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these. I tell you the truth, anyone who will not receive the kingdom of God like a little child will never enter it." Mark 10:14-15

I did have a visit from the other family that we roomed with. The son stopped by to see how Kristina was doing. They were told yesterday by the doctor that there was not much that could be done for their mom. She has cancer in her brain, and it is not likely that surgery or radiation will do anything for her. I have been in their shoes and I understand the hurt when you realize your mom is leaving you. There is a lonliness that is so real when you become parentless. However, they do have the comfort of knowing their mother is a child of God and will be with Him someday soon. There is comfort in that as well as knowing He provides the comfort we need during this difficult time. They need our continual prayers.

God is so very good and knows what we need and when we need it. How awesome to know God loves us so much that he thinks of even the little things.

Thank you all for your prayers . . . even when we don't know how to pray!

God is Good!

Today has been a much better day. Krissy is beginning to eat (a clear, watery diet), but she is keeping it all down. She woke up today with a swollen eye. It is her left eye and it is swollen shut. She looks like she has been in a boxing match, and it is beginning to look bruised. The doctor told us this may happen. But, she continues to take it all like a real trooper! She has been out of the bed a few times today, however it makes it worse on her head when she stands up and walks. The doctor told us today everything still looks good and we hope to start seeing seizures now. She did have one semi-gran mal earlier today...but they need alot of them to look at and compare.

We have a new roomate tonight. She is five years old and they are video monitoring her because of an irregular EEG that shows spikes in her brain activity. Boy is she a real talker! We had a discussion earlier about her leg that wanted to go home (so it keeps wiggling alot) and the other leg that knows they have to stay here in the hospital until the doctor says they can go home. She said her wiggly leg doesn't understand. So we had a real deep discussion about persuading her leg to stay. My kind of conversation lol. I had the opportunity to talk with her mom and found out her brother is autistic and has seizures . . . and now they want to check out her daughter. I shared with her about Kristina's adventures. The son was in the hospital two weeks ago with a ruptured appendix. She asked if I would keep them in prayer. I pray God will continue to use us as we are here.

For those of you that have been praying about Kristina's insurance and disability issues, we received some news today. It was good news! She has been approved for adult medicaid and disability benefits. What timing God has!! Truly an answered prayer!!
And....the nurse brought me a cot to sleep on tonight! I don't have to sleep sitting up!
God is good!!

Thank you for all your prayers, notes and calls. Now we pray for seizures!

I love you, O Lord, my strength. the Lord is my rock, my fortress, and my deliverer; my God is my rock, in whom i take refuge. He is my shield and the horn of my salvation, my stronghold. Psalms 18:1-2

Pics From Surgery Day

What Day is This Anyway?

We are finally in a room! We are on the sixth floor in room 45A. I really don't think Krissy knows that yet, but we are here just the same.

I truly have felt like a gypsy today...traveling from one waiting room to another, in and out of the ICU unit, and now finally settling down for the remainder of the week. Once again, I am not sure Kris even knows where she is or what day it is at this point.

She has had a pretty rough day. She continues to be sick to her stomach and has eaten only two crackers and a few sips of sprite. They are continuing fluids through an IV and they still have her on a steroid to keep the brain from swelling and pain medicine for the headaches. Now, add that to her regular dose of medicine and Krissy is in sleepy land. Actually I am very glad she can sleep. They have her hooked up to the video monitoring but no visible seizures yet. I pray that on Wednesday she feels better so we can start praying for seizures. Hmmm, that just doesn't sound right, but that's what we need.

It is finally sleeting and snowing here. We are expecting about 2 inches of ice. I had planned on going out to the car tomorrow to get clothes and things but that changed rapidly when I had the opportunity to catch the puke tonight. (I know all you parents will understand how that happens, lol) I just felt so bad for her. Because the sicker she got the worse her head hurt. Anyway, it is way cold out there and very slippery!

Now let me tell you how God uses those times in a very special way. Just as I am feeling I am on an emotional roller coaster and swallowing the lump of tears in my throat as they are trying to clean up sleeping Krissy, I met the grown children of the elderly lady in the bed next to Krissy. Their mother had come in earlier and the nurses were having a hard time with her. So, they were back. As I walked into the hall (with the puke down my leg) they were talking and crying together. I asked them about their mom and they shared that they were having to make some very difficult decisions about her care. God prompted me at that point to pray with them. So we stood in the hall and prayed and cried together for their mother. Amazing. My pukey pants didn't seem such a big deal any more.

The daughter is spending the night here in the room taking care of her sick mother. And here I am, a mother, spending the night in the room taking care of my sick daughter. The difference is they are looking at letting her go . . . and we are looking at setting Krissy free. And yet we were able to connect . . . through the love of God which allows us to love so deeply.

Dear friends, let us love one another, for love comes from God. Everyone who loves has been born of God and knows God. 1 John 4:7

The address here at the hospital is as follows:

University of Virginia Medical Center

Kristina Noa - patient

floor 6C room 45A

Charlottesville, VA 22908

Operation Day!

The first day is over. I know everyone has been through a day that seemed like it would never end...well that was Monday for us. Kristina went into the surgical unit at about 10 am. We had a chance to talk with Dr. Elias (the surgeon) and he was very optimistic. (If I had not seen his credentials I would say he was too young to operate on my daughter) I left her at 10:45 am as they rolled her into the operating room. Once they got her back there the Doctor called and let me know that he would be shaving her entire head; it would make it easier for his work. He did not want us to be surprised. I returned to the waiting room for a very long day. The six of us spent our time talking, sleeping, drinking coffee, playing "I spy", playing with computers, and attempting to put a puzzle together. I was very thankful to have them all here for Jess and I!

We finally received word at 4:30 pm that Kristina was in recovery and they were waiting for a bed in ICU. We moved up to the 6th floor ICU waiting area, anxiously awaiting to see her. At 6:00 pm Jess and I were able to go back. Kristina was drowsy from all the meds but gave us a great big reassuring smile. Jess and I needed to see that! Her head is all bandaged up with a few wires coming out for the monitoring hook up, but she looked good. She was talking some, however all the pain meds were making her want to doze off. She did tell us all she remembered was going into the operating room and saying how shiney it was . . . and then she was out. Everyone had a chance to visit with her before she went back to sleep and some had to leave for home.

On a later visit in the evening she did eat some fruit and was complaining about how severe the headache, but she realizes that will be part of the process.

Pastor Sandy and I were run out of the waiting room at 9 pm and had to go to the downstairs surgical waiting room for overnight. A long night with some sleep in a squeeky recliner ... but sleep just the same.

We went in to see her this morning at 5:30 am. Once again she woke and smiled when she saw us. In typical Kristina way, she was concerned about how we slept, my cold, and Sandy having to drive home in the ice storm that is expected. She did tell us that she had thrown up over night (nurses told her it was from the medication during surgery) ... and she just does not throw up! But overall, she was doing good and in good spirits. She said they woke her up to poke her every hour, and Kristina does not like to be woke up from sleep! She looked really good and was not as swollen as I had expected from what the nurses had told me.

The plan is to get her into a room this morning on the 6th floor in the epilepsy unit. We will then have a room number and phone number for people to contact her.

Prayers are being answered!! And by tomorrow we will once again be praying for seizures ....so they can be monitored. All is good! And our God is our strength!

MRI "Lifesavers"

Spirits have been very good overall today. We have had alot of support from our friends...and that has made the trip much more enjoyable. Daniel and Richard drove Jess' car and followed us. We picked up Mary in Greensboro and headed on up. Once we arrived at the hospital they took Krissy in to have her MRI. Sandy arrived shortly after.
Krissy came out from the MRI with a distressed look on her face. She had round (donut looking) stickers on her forhead, ears and all over her head. They had to shave the small areas where they attached these "dots". I think it is beginning to sink in what is really happening.
We all went out to dinner and she felt like people were looking at her funny...but you know, I told her those new bluetooth phone things that are attached to the ear look more like an alien than she does.
We took some pics and I have one attached ...as Mary said, only Krissy can still take a good pic with thingys all over her head! (lol) She thought it looks like she has lifesavors all over her head!

We just keep reminding ourselves...God is in control!

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:6-7

Pre-adventure Jitters!

It's Friday! On Monday the journey continues at the University of VA Hospital in Charlottesville, VA. This blogging is new for me, however a great opportunity for me to let all know about the journey Kristina is beginning. Anxious? Yes! I guess that is the best way to describe the emotions we are all feeling today. Yet, we feel confident that God is in control and all is in His hands and has been since the very beginning of Kristina's life.
Psalm 139:14 - I praise you because I am fearfully and wonderfully made; your works are wonderful. I know that full well.