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! 

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. 

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: http://www.amazon.com/Mothers-Path-Samanthas-Journey-Disability-ebook/dp/B013TQU59W/ref=sr_1_1?ie=UTF8&qid=1439734622&sr=8-1&keywords=A+mothers+path+in+Samantha 

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! 

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!