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!