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

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

August 21, 2011

So I could tell you that I'm just a tad bit stir crazy today even though I have been home more this time than last. Today I would really like to be home with all my family together. Maybe soon. So Fridsy's MRI was wonderful. The fluid in that cyst had actually reduced in size and I know that is because of God's healing hand and prayers from so many of you. It is still there and will be watched closely. So as far as Neurosurgery goes we could go home, the problem is that Sam started having seizures this week too. They are different from the seizures she had a few months ago so we didn't catch them at first. They have not done another EEG because all of the machines they had were in use over the weekend. Since they are not life threatening seizures they are trying to see how she does when her meds are increased. Overall Samantha is doing so much better than she was in the middle of last week. I am hopeful that we will get to come home tomorrow or in the next few days. We think the world of both her neurosurgeon and her neurologist because you can really tell that they care about our Sam. We are so blessed to get back on the 6th floor because the nursing staff is fantastic. We have never had a nurse didn't love!!! Thank you all so much for your continued support. The cyst being smaller was our first major blessing of the week but there was also another. When we had to bring Sam back Tuesday I was really stressed about missing days at work since I had just started back. I should have known that God would provide.... It turns out I still have several donated days from last year that I was able to use. I really wish I could thank everyone who donated any days to me last year! Your gift was a blessing that you just can't even imagine. If you happen to know someone who donated days, please hug them for me! I also wish I could hug and personally thank everyone who has said prayers on Sam's behalf. You really have made a difference in our lives! My Sunday School lesson that I taught today was on the word TRUST. The fact that we can trust God is so powerful and the fact that He sends us people to pray, comfort and support us through troubled times is truly LOVE. That is the exact reason why people should find a church body to belong to. God knows we are stronger in numbers.  He must rejoice to see His people support each other and praise His name. So very thankful for all of your support! Love, Steph

This was Sam after her second shunt was placed last week. :(

Gwen couldn't stand it any longer!

We let her get in her hospital bed so they could watch TV together!

August 16, 2011

So Sam kept getting worse instead of better. We finally brought her into the Emergency Department last night around midnight. We had called the neurosurgeon on call for the last three nights. Since she was over 72 hours out of surgery and still having problems they had us come on  in. She had not eaten since 1 pm on Monday afternoon with a projectile vomiting episode Monday evening. I had posted on facebook a few weeks ago about shots being one of the worst things for a baby. I take that back... finding an IV on a baby beats that hands down. They finally got an IV in, repeated the chest x-ray and also another MRI. Then another projectile vomiting episode when they tried to give her meds. This time I was the target. (Would be the target for that sweet child any day!) This poor baby has been tortured! Once all this was done around 4 am we started to get some news. There seems to be another pocket of fluid that is in a different location from the areas of the two other shunts. The thing that was concerning was that from Saturday until now that pocket of fluid has increased. Her symptoms are most likely cause by some kind of neurological situation but we are unsure of the exact cause. It could be that her brain is trying to get use to having the second shunt in and this will all blow over in the next few days. It could also be that this new pocket of fluid is growing now that there is room (created by getting rid of the pressure from the 4th ventricle shunt) and it will have to be drained as well. This is yet another brain surgery and the doctor will actually have to go cut through part of the brain to make a passage for the area to drain into one of the other shunt areas. When he came to talk to us tonight you could tell he was troubled by all of this. He said that in some children it seems like they get in these situations where they have these battles and stay in and out of the hospital for long periods of time. It is just so hard to believe that just over a week ago I was going for a check-up with Sam and now we are deep into surgery and trouble. The thing that breaks my heart the most is the amount of pain she has been in the last few days. Most of the last few days she has whimpered, trying to get to sleep with little rest. She has just been miserable. I have not seen that sweet, happy smile out of her in days. This afternoon her IV needed to be changed because it blew up her leg with pressure. They had the transport crew in there from almost 2 hours and they could not get an IV started on her. Please pray that she feels better and that no other surgeries will be needed. If they are, please pray that God will guide the hands of the surgeons and that He will heal Sam's head. So many times when we are in the pits of life we can't understand why we are there..... Sometimes we are not even aware of the purpose years after the troubles are gone. The good news is that God is bigger than all of this and He knows why. I rest in His arms knowing that His plan is perfect. Your prayers cover our family daily, but most of all our sweet Sam. God has special plans for that sweet child!

August 14, 2011

Sam's scans were good and we were able to come home yesterday. She was still in pain so they sent her home with pain meds. She slept most of yesterday which was good. Last night when she woke up she was more like herself until she had a sudden scream of pain and got really upset. When she gets upset her whole head turns red and I am sure the pressure builds up and it makes those shunts work. Well her incision sites started to show a small amount of fresh blood after that. We of course called the hospital and the doctor on call told us that might not be anything, like we thought, and just to watch her. She settled down quickly and went to sleep shortly after that. I woke her up to feed her once her pain meds were due and she ate a little again with not tons of signs of pain. Then when the next feeding and dose of pain meds were due, she woke up crying when I was changing her diaper I noticed she was warm. Travis took her temp and she had a low grade fever. We changed her clothes to another outfit while feeding her and it did come down. Not sure if she had just gotten too hot in the other outfit while sleeping or the pain meds started to work. She has not been eating great. She has only had about 3/4 to 1/2 of what she normally eats and she goes a longer time in between feedings than normal. All of this could be the way she is healing but it puts us on edge because we have been down the road of shunt infections before and it is not a road we want to travel again. Please say an extra prayer that everything is okay and she will be feeling better soon. Thanks so much. Steph

August 12, 2011

Sam made it through surgery and they were able to get the shunt placed. PRAISE GOD!!!!! She has been very upset since the surgery because of pain but we finally were able to get her settled down and she has been sleeping. She is still very swollen and it is hard to hold her because of where the surgery was on the back of her head. I felt like if I moved the slightest bit I was touching a tender spot for her. Tomorrow she will go for another MRI and a shunt series to make sure everything is working okay. I feel so blessed for the amazing doctors that worked on her today! I feel so blessed for the wonderful nursing staff on the 6th floor who make us feel like family! I feel so blessed for all our friends and family who have prayed, visited and posted messages of support today! Sam even had a special prayer group on the DES playground during 1st grade playtime. I am sure God was smiling down on those special little prayer warriors! Most of all I am blessed by an amazing God who placed all these people in our lives, blessed us way beyond what we deserved and sent His Son to come to Earth to die on the cross for my sins! Seeing Sam in pain today broke my heart.... I simply can't even begin to imagine how God felt watching His Son at Calvary! So thankful she made it through today! So very thankful! Love you all..... Steph