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