Friday, September 30, 2011

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!

Friday, September 23, 2011

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

Tuesday, September 13, 2011

September 13th- 5 1/2 months

I am just tired. I have actually written a post in the last two weeks but I didn't publish it because it was kind of a "stressed out" post. I have found that sometimes it is just therapeutic for me just to get it all down. However, my sweet McKeaver girls told me that they check my blog most days for an update so I thought I would share a little bit about what is going on.
-A little over a week ago Sam had a check up with Neurosurgery. It was not necessarily a bad check up, but it was one that had me thinking. Because Sam needed the second shunt and because of the cyst that came up when the pressure in the fourth ventricle was relieved, they now consider Sam to have Complex Hydrocephalus. It really just puts her in a different category of hydrocephalus. We talked about watching her head measurements daily and the possibility of the cyst growing larger in the future that could lead to surgery.  I asked if it was possible that another pocket of fluid (cyst) could appear at that time and the answer was yes. She said that there was actually a patient that this happened to and he had over 20 surgeries until the fluid stopped causing problems. I guess I am having a hard time relaxing about the whole situation because the last time I did, I felt like the rug was pulled out from under me when we went back into surgery. We also talked about the stiffness in Samantha's muscles and the possibility of a diagnosis down the road of cerebral palsy. She did explain that there is a wide range of CP. Some kids you might not even recognize as having it once they finally reach milestones. I guess it was just more stuff to think about.
-Last week we finally had her physical therapy set up again and had another evaluation done. The good news was that she scored in the normal range. The main impairments that she saw this far were her body's range of motion, flexibility and head control. The blessing is that we are starting Sam early and this will help us work with her to overcome obstacles faster than if she was not receiving these services.
-Last week we also found out that my maternal grandmother passed away. Even though it was a blessing that she is not suffering anymore, she was an important part of my life and she will be missed. It also means that I need to travel for her memorial service. Because it is out of state, we have decided that Gwendolyn and I will travel to the memorial service, while Sam will stay here with Travis. We just feel that she needs to stay close to the hospital just in case. I am VERY anxious about leaving her for the first time ever! I know she is in good hands with Travis- but it still is weighing heavily on me right now.
I guess overall I feel very burdened with worry lately. Every time she shows any kind of odd behavior at all I start to check her from head to toe- Measuring her head, checking her fontanel, checking her temperature. The thing about it is that it could be so many different things not even related to the fluid. It is not a worry that we can't make it through, it is a worry that I might miss something somewhere. I don't want her to be in pain or to have CSF pressure on her brain that might cause any kind of damage. I have really tried hard to just give my worry to God but I guess I haven't been very good about it lately. I think that it is because we have had such major stress factors in our life for a long time now. It tends to wear on you after a while. Through this dark cloud of worry and stress there is a bright spot. It is God and the people he has sent us in support. I have been listening to the words of Matthew West's song Strong Enough for months now. Some days I have to sing it to myself several times so that I remember that His hands of mercy constantly cover me. Samantha has another check up next week so I will try to post more after that appointment. Thankful for the blessing of you all. Steph