January 16, 2011

Sam loves to grunt. This is what we do for fun at our house!

January 11, 2012

Well I just read my post from January 4th of last year. There was so much worry about what would happen in the coming months. God has richly blessed our family with Samantha. I know it has been a while since I last posted but life has been a little crazy. Right before Christmas, Samantha got sick and started having some strange behaviors that made us fear that her cyst was growing. We had an MRI and shunt series done but found that the cyst showed little change. Christmas and New Year's at the Bode house was more than I could have ever asked for. I often got emotional thinking of just where we have come in the past 12 months.  Samantha turned 9 months at the end of December and it is strange to think she will be turning 1 very soon. She smiles all the time. She loves to stick out her tongue at people and has the cutest laugh when Gwen plays with her. She says DA DA and UH OH. She loves it when you repeat what she says. She has just started to not scream her head off when she is placed on her belly and will hold her head up for a short time. I am not sure if this was a delay because of the shunts, extra fluid in the 4th ventricle, being spoiled or all of the above. She doesn't yet sit up on her own completely but she will for brief periods of time before she starts to fall to one side. She will go on her hands and knees. With a lot of help she can even start to crawl toward an object. PT completely wears her out but we are seeing improvements. She still keeps her legs very stiff most of the time. At our appointment with Neurology this week we were told that Sam does have Cerebral Palsy. Her CP is primarily in her legs from the increased tone. Most likely we will be looking at medication, shots and/or braces for her in about 3 months. We were told that we should be prepared for several years of PT. When I asked her if she thought she would walk she said that she thinks that she most likely will but with the help of some kind of assistance like braces. I asked her if she would outgrow this and she said only time would tell. It just depended on what the actual cause is that was not allowing the connection to be made correctly between the brain and the legs. I had a feeling that this diagnosis would be coming but actually hearing it was still a little bit of a shock. I left feeling numb and emotionally conflicted. I was upset with myself for being upset because I know that she is already doing so much better that what we originally expected. I guess it is just part of the process. Every mother wants the best for her child. I just don't want her to have to struggle. I do know that whatever comes her way, God will see her through it. I was going to load a picture of her tonight. When I took it I didn't even pay attention to the wall plaque but looking at it now it game me a little peace.

Thank you so much for your continued support and prayers for our sweet girl. May I never have a moment were I take for granted just what a blessing both of my precious girls are.

Halloween 2011

We just entered the girls in a Halloween Costume Contest for our local newspaper. The winner gets a gift certificate to the place where we have our vehicle serviced. If you have a minute, please register and vote for Gwen the chef  and Samantha Grace the crab! It would be wonderful to have a few free oil changes since we run the roads for doctors appointments so often. Thanks so much for all your support!
http://mtairynews.upickem.net/engine/Details.aspx?p=A&c=40323&s=12527299&i=1&m=X#SD

October 27, 2011

We are SOOOOO happy! The cyst had stayed the same. If you look at the MRI images from August, September and the one today side by side the cyst has not changed all that much from August. It is large but it is showing no signs of creating pressure in the brain at this time. Her head had grown some but the cyst had stayed the same! I asked them what were the chances of doing surgery on it in the future and they said if it stays like this no surgery will be needed! Thanks so much for your prayers.... God was listening and He gets the glory for all of this! It was nice to have a little peace in my heart tonight! Just to hold my sweet girl without the worry..... BLESSINGS!!! We will go back in January for another MRI to check to see how the cyst looks then. Until then, life goes back to normal~ or the new idea of normal anyway! WHOOOO HOOO!

October 26, 2011

Whenever I am afraid, I will trust in You. (Psalm 56:3 NKJV)

So tomorrow afternoon is Samantha's next MRI and Neurosurgery visit. Just over three weeks ago was her last MRI which showed that her cyst had grown. This will be her 5th MRI since her last surgery in August. A good friend of mine told me to try to enjoy the time with Samantha without worrying. I have really tried to do this but as the days grow closer to the scan it has gotten harder. When I measured her head tonight I could see a difference from the last time about a week ago. Overall she is doing well, it just makes me sick to my stomach to think about her having to go through surgery once again. The cyst is large enough that something will have to be done with it at some point and I have a feeling that her doctor will tell us tomorrow that it will be soon. Please know that these thoughts are not from a lack of trust that God can fix it. I believe that God has already worked miracles in Samantha, but I also know that God places us in situations for His purpose. "To everything there is a season, A time for every purpose under heaven: (Ecclesiastes 3:1 NKJV)" Even though I am worried about what tomorrow holds, I hold tight to God's love and the fact that his plan is PERFECT! I think so often these days about just how blessed we are. If Sam would have been born before the 50's she would be fighting for her life right now because shunts were designed in the 50's. So we are so blessed to be living in a time with modern technology. We are also blessed to live in an area with an amazing pediatric neurosurgeon less than an hour away. We also have an amazing group of people who we are blessed to have take care of Sam at the hospital. God has also blessed us with such amazing friends and family! Your support and prayers have gotten us through some really hard times. One year ago tomorrow was when my gallbladder was taken out and my health started improving. It is also the start of us finding out about the situation with Samantha. It is amazing to think where we have come in a year. I will post tomorrow night when we find out more about the cyst from the scans. Here is some videos of Sam from tonight. She was very please with herself because she learned to make bubbles. She also started saying dada last week! Even though it is a huge milestone, it is a sore subject at our house because a certain someone likes to rub it in!! Thanks for any prayers you can send our way tomorrow!!!



September 30th- 6 MONTHS OLD!!!

The last week has been a one day at a time week. I have had such a feeling of just being overwhelmed. Knowing that the fluid has increased and the possibility of another surgery has weighed on not only my heart but Travis' and Gwen's as well. Last night as I was watching TV, I held Sammie Grace while she was sleeping and a rush of peace entered my soul. I know it was from God. When I woke up this morning the first thought that entered my mind was that Sammie is 6 months. It was so strange because I had been so busy this week that I had not even thought about it. It has been half of a year of loving a sweet little baby! Gwen also reminded me this week that October reminds her of me being sick. It is such a praise that I am able to enjoy one of my favorite seasons this year. I remember looking out the window of my bedroom last year seeing the leaves change. It was like the movies when they are trying to show you how time has passed by. Today I have been filled with joy. I think God knew I needed it. I am so joyful that my sweet daughter is here with us and we can celebrate her being 6 months old. I am so joyful for my health! Gwen memorized all of Psalm 23 this week for Awana. I think that God wanted me to remember that we don't have to be afraid because He is always with us!



September 23, 2011

Wait on the LORD; Be of good courage,

And He shall strengthen your heart; Wait, I say, on the LORD!

~ Psalm 27:14

We had a visit with the neurosurgeon yesterday at 2:30. I worked in the morning and had a little bit of time with Sam before her appointment. It was so good to have some time with her since I missed her this weekend when Gwendolyn and I went to Florida. I also enjoyed having some alone time with Gwendolyn. She has been such an amazing kid through all the things our family has gone through in the past year. At her appointment Sam's head was measuring a little larger than just two weeks ago. When we had gone in August it had jumped from the middle line on the chart to completely off the charts. At the last visit it had made it back down to the second highest line and this visit it was charted on the top line. Because of this and the fact she is still having some slight other indicators things could be wrong they decided to have an MRI to check the cyst. On the last MRI that was done, the cyst takes up about 1/3 of the photo of her brain when looking down from the top of her head. They wanted it done soon and since I live about 45 minutes from the hospital they added her in for a scan at 9 o'clock last night. They weren't able to get her back until about 10:15. The good thing is that her scan only takes about 10-15 minutes. We were able to finally get home shortly after 11:00. It just made for a long day when I had not planned on it taking us so long down there. This morning Travis and I were on pins and needles waiting for our doctor to call with the results. Since our main neurosurgeon was in surgery today, we were able to talk to the PA and she let us know that the cyst had grown from last time but it didn't seem to be causing pressure. She was going to talk to our doctor and see what he wanted to do. After our main doctor looked at the scans he decided to wait for a month and have another MRI. Then we will see him right after the scan. I am relieved that we are not looking at surgery at this time but I still feel the stress of the possibility. This is why I added the verse above. It is a verse that I read the other night and something made me read it over and over to myself a few times. I now know that something was God. It came to me when I was finally able to take a minute this afternoon to just sit and process it for a minute. Although I am so tired of all of this, I know down deep that it is okay because He is with me. I have to just praise Him for all my blessings. My two precious girls and my wonderful husband! All my friends and family who have stood by me through all that we have been through. And so many others who I might not even know who continue to pray for our Samantha. Not every moment of every day I am strong, but when I am weak He is there to provide me strength. "God does not take away trials or carry us over them, but strengthens us through them." ~ Edward B. Pusey