April 21, 2016- 10 Days Until Surgery

So we went to see the Sam's neurosurgeon today about her surgeries she will be having. I know it has been a while since I posted on the blog so let me catch you up. We prayed all December and January about going forward with a new procedure. Basically they will implant Stereo EEG electrodes in her brain to get a better picture of exactly where the seizures are coming from. Sam was averaging two tonic clonic seizures a month from January of 2015- October of 2015. Right now she is averaging one every 4 days. They are building in strength because she is getting immune to the medicines. If we don't do something soon we are going to most likely be looking at seizures that are out of control once again very soon. So these electrodes will tell us if we have one or two spots in the brain that the majority of her seizures are coming from so we can remove those sections of the brain. Yes, it is a little scary to think about doing this with our 5 year old daughter. So this is what we found out today...

- Because of her shunts and the possibility of infections, we are going to shave her whole head. He was going to do all but about an inch from her forehead. We decided to just let it all go. 

- They will be putting in at least 9 screws into her skull that will hold the electrodes. There is a good chance there will be more. He will decide when they get the MRI results that she takes next week. This will be painful and there will be minor swelling. :( 

- It will take at least 6 hours in the OR. He said she will most likely be his only patient that day. 

- We will go right to the Epilepsy Monitoring Unit that night to begin getting her hooked up for monitoring.  

- When they locate the spots, they will see what they think will be effected by taking that section out. There is not any guarantees about it not causing damage to some kind of function for her. The sections they are watching close deal with vision and motor function. 

- If they take a section out, we will be in the hospital at least 5 more days, if not longer. 

- If we decide that it isn't smart to remove those sections, we look at putting in a VNS. 

- The things that have him worried are that she has two shunts that are out at a risk for infection, we are opening the brain up for chances of infection, she has multiple spots that start seizures in her brain. She will be on antibiotics during her stay. 

We are stressed about it but her life at the current time is stressful because she is living in constant fear. We are in constant fear and worry because her seizures are just getting worse quickly. Please pray with us that all these unknowns have the best possible outcomes and Sam can come away from all of this stronger. That she can live her life without being constantly afraid. It is going to be a long haul with a dog, and a 5 year old in a small room for weeks, but at least we had a little time to plan. Thanking God for doctors we trust, friends who pray and for what we have today, because none of us are promised tomorrow. 

January 5, 2015

Tonight was our first seizure of 2016. She had just gotten to sleep. She falls asleep on my arm holding on to my clothing because she is always seeing "scary spiders" when it is bed time. We think this has something to do with seizure activity. She all the sudden got stiff and when I moved her to look at her eyes I saw she was in one. Her left hand had just started moving since it was just starting and I immediately got Moose's training bag out. I said his name one time and he came right up to her. He then looked at me, saw the bag and started barking. We realized very quickly that she wasn't going to be able to get herself out of this one so we gave the first round of meds. Within a minute and a half of meds she had finally started to come down. It was only 5 minutes but every seizure causes an immense amount of anxiety in our house. I HATE SEIZURES! Relief hits us when we see she has come out of one but we are all upset and drained from the experience too. 

So after it all hit and I got her back to sleep I just hugged her and cried. If I were sleeping I could have very easily slept though this or atleast a good part of this. How scary! I am very thankful for Moose but I still have a worry about her that causes my heart to ache. Seizures rule our lives. The problem is when she is in situations that make her tired or stress her out, she is more at risk to have them. I feel like we are very overprotective of her and her activities. I worry that sometimes people think we might be doing it to an extreme but we have been through so much with her. I feel like it is my job to protect her. I hope and pray that my choices in life give her a happy life but also give her the most healthy life I could possibly provide. God has started to give me peace about doing the best for Sam. I pray that he always guides us in the right direction. 

We are right now praying hard about a procedure for Sam. Please help us pray that we make. Right decision for her. Anytime we look at anything involving her brain I always worry about her cyst, the shunts and her CSF. Travis is not a person who likes to talk about these things all the time. As a father you want to feel like you are protecting your wife and kids all the time. I am sure it eats at him that he has no control over protecting her from all this. Please don't be offended if you find he doesn't say much if he is ever asked. 

Praying for Gwen too. She loves Sam to the moon and back and these night upset her greatly. I am so thankful for her. She is amazing in these situations. It is hard to believe she is just 10 years old dealing with it all. 

I have comfort knowing tonight that others all over the world deal with this and we are not alone. I have comfort tonight for my many friends and family who are praying for Sam and our family. I have comfort tonight that God has been there and I know He is by our sides though this journey.