Thursday, April 21, 2016

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. 

Tuesday, January 5, 2016

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. 

Sunday, December 6, 2015

December 6, 2015

So many things have been keeping my life crazy this fall with the main one being sickness. It seemed that we couldn't stay well this fall. No major seizures this fall, that is a praise to God! She is still having them but we are able to get them stopped at home with meds in a reasonable amount of time. Moose is doing well. We have people asking about him often. I usually just say he is doing good because it is kind of a complicated answer. He is trained to alert during her larger seizures where you can physically see she is in a seizure. We work with him all the time to practice alerting. We keep with us a bag that contains a clicker, a tennis ball and a bracelet that is attached to fishing line. We put the bracelet on her while she sleeps and then will start pulling to imitate seizure activity. When he starts to alert we click and after several barks her get the tennis ball. This is the only time he is allowed to play with a tennis ball. We chose this toy because he LOVES tennis balls. So when she has been in a seizure that would require meds we can wait up to 5 minutes to give her first set of emergency meds. After being frustrated at first because we wanted to get the seizure stopped and he wasn't alerting, we made the decision to give that 5 minutes to Moose. We work to get him to alert and once he does we give meds. It usually doesn't take that long but we have to give him that time to make the connection. If we could predict her seizures or if they were happinging several times a day it would help but seizures are unpredictable. We did start working on him retrieving medications. We have a bag that was made by Jason at Highland that attaches to a chew rope and we hang it on the wall. A couple times a day we hang it up and say Meds which is the command to get the bag and bring it to us. He is getting very consistent getting it to me in different parts of the house. Our next step will be leaving it hanging there all the time and randomly calling for him to get them. Even though it is daily work, Moose is a blessing to us. Even when I find a pair of my favorite shoes have been turned into his new chew toy! 

Sam is doing great in her new wheelchair and has been doing small trips in her walker. It makes me so proud of how far she has come. I can tell th seizures take a toll on her mentally. Some days she can tell you all her colors, count and so much more. Other days she struggles to remember. Those smaller seizures take a toll on her as well. Makes me worried about moving forward in school because I know it is going to be a struggle at times for her. 

We are very blessed to have two amazing nurses helping with her right now. We are very thankful to Bayada for taking good care of our family. We are also very blessed to have a great PreK class for Sam. Her teachers are very caring and she has been blessed to have them for two years now. One of Sam's favorite people is her bus driver Cowboy who takes her home each day. She also has a great team of therapist. Between Speech, OT and PT, Sam is well taken care of. 

Overall, life is rolling along. I hope all the people in our lives know how much of a blessing they are to us. We wish everyone a blessed Christmas season! 

Monday, August 17, 2015

August 17, 2015

Sam has been really struggling the past few days. Medicine changes are so hard when it comes to epilepsy. We ended up slowing down the recent medicine change by adding an additional week to the process. Once we got her on the last dosage in the plan, she has been very tired, won't eat and is spiking a temperature on and off. We have had a situation where she has been on a toxic level before and I think we are on that border once again. We are going to watch her close tonight and talk with her doctor in the morning. She doesn't have any room to move up on either of her current meds so if this dose doesn't work we will have to go back to the drawing board with meds. It is kind of a frustrating process. It is hard to see her slo sleepy. She is just waking up from her second nap today which was three hours long. I know I ask for prayers for Sam and or family often, but if you could send some her way tonight I would greatly appreciate it. God has her in His hands and for at I am thankful. 

Sunday, August 16, 2015

Summer 2015

What a wild ride it has been this summer! In June our 5th member of the Bode family finally came home. Moose was delivered by the trainers just after Travis has arm surgery. He really has brought many smiles and a whole lot of laughter to our house. He is so sweet with Sam. He doesn't get mad at her when she pats him or pulls at him. Please note that we are constantly watching to make sure she is not rough with him. It is constant work having a service dog. We have to review his commands daily and it is one more living thing to take care of in the house. I can say he is worth it! The biggest obstacle right now is having him bond with Sam more than anyone else.
 I also had the opportunity to spend some one-on-one time with Gwen this summer. It was great to have time just with her but I missed my other three Bodes. Sam overall has had a pretty good summer. She seems to be having smaller seizures while she sleeps and some absent seizures while she is awake. The main problem is issues with her memory. This weekend she has been very off but we are unsure if it is the recent medicine change or a bug. The blessing is that it happened while I am here and not when I was off with Gwen. Gwen is starting her last year in elementary school and Sam is in PreK for her last year. Moose will be going to school for his first year and that should be an experience in itself! 
This past week I finally had my book published that has been a work in progress for 2 years. I couldn't have done it without the help from my good friend Kristi Calton. It is not the type of book I thought I would ever write, but God placed it on my heart one night so I knew I had to do it. I have really struggled with God over the past two years because so many times I put it off. He never left me and now that it is finished I feel such a peace. If it helps one person with their journey than it was all worth it. The book is for parents of children with disabilities to let them know they are not alone. If interested, it can be found at: 

Now that the book is published, I am going to try to dedicate more time to posts. I also am working on a series of books that is dear to my heart. They are children's books with a main character who is spunky, fun and happens to have a disability or two. So thankful for an amazing friend who is helping me with illustrations since drawing is not something I am blessed with. Overall, life is good. Thankful for life's struggles because they remind me of all of God's blessings. I appreciate all of you so much! 

Friday, March 27, 2015

March 29, 2015

I can't believe that Sam is going to be 4 in just days! What an amazing journey it has been. I know that I have not been the best about keeping up with our blog in the past year, but I am going to try to update more often. Since my last post in December we have had another hospital stay. This one was actually planned. She went in for a surgical evaluation for seizures. We found out that she is having spikes in epileptic potential on both sides of her brain about every second while she sleeps. We also found out that she has seizures starting in several parts of her brain. They told us that they didn't think she would every be completely seizure free but we know that we serve an amazing God who gives people the knowledge for medical breakthroughs all the time. No matter what happens in Sam's life, God is in control. I wouldn't change a minute of the past 4 years. Every heartache and ounce of worry comes with the amazing gift from God we call Sammie Grace. She is worth every second. Thank you so much for walking with our family through this journey. I have been working on a book that I hope to get published in the next year. It shares my advise and experiences as a mother through this journey. Please help me pray that this will be a blessing to other people in the future who will go through similar situations. Now it is time to CELEBRATE the past 4 years! Happy Birthday Samantha! You are one loved little girl! 

Wednesday, December 24, 2014

December 22, 2014- The Good, Bad And Everything In Between -2014 WithThe Bode Family

The Good, Bad And Everything In Between -2014 With The Bode Family

-Gwen's 1st year of Upward Cheerleading
-The 1st time Sam played in the snow
-Sam started having a full time nurse

-Gwen's last single digit birthday
-Sam had her first seizure while in the car (on the side of highway 52 :( )

-Sam had a her 4 hour seizure followed 5 days later by a 2 hour seizure :(
-We found out how much we are richly blessed by the prayers, support and love of so many during Sam's 20 day hospital stay. 
-Gwen started her first season of soccer
-Sam turned 3 :)

-Sam's first day of Pre-K

-Gwen auditioned for her first play at the AGP

-Another hospital stay due to over medication :(
-We found out Sam was getting a WISH :)
-VBS when Sam found her BFF Ben

-Sam's Make A Wish trip to Disney
-The lake with Grandma and Grandpa
-Gwen's first sleep over camp
-Salem Summer Arts :)
-God finally showed us what to do about a service dog for Sam
-Money for Sam's seizure dog was raised within 1 week! Amazing isn't even the word for it! 

-Gwen was asked to speak at SCS Convocation
-Gwen started 4th grade and Sam's 2nd year of Pre-K
-Gwen and Sam were blessed to be apart of Cory and Nicole's wedding

-First no major seizure September in 3 years

-Halloween fun with The Awkward Family Photo, the old ladies and more
-Meet Moose for the first time!! It is a match! 

-Special visit with Moose :) 

-The Best Christmas Pageant Ever at the AGP
-Testing starts for Sam's surgical evaluation

There is so much more that makes up this year but what a year it has been. Some moments were extremely stressful and scary. Others were moments sent directly from God but every moment had a purpose. I praise God for every single one. If we never walked in the rain, we wouldn't take the time to appreciate the sunshine! Wishing all of you a very Merry Christmas and an extremely blessed New Year! 

Here are a few of my favorite pictures from 2014- So blessed!