A Message from Sam

July 22, 2011- Almost 4 Months

Sorry it has taken me so long to post an update but keeping up with two kids in the summertime has kept me busy. I was never able to get to the nesting phase when I was pregnant with Samantha because of all the craziness and worry so I believe it has hit in the last few weeks as well. I have cleaned out every closet and drawer in the house. So life is good, God is amazing and I feel so blessed. Sam's last PT appointment went really well. She was really pleased with her progress and feels like she is hitting some great milestones. One of the things that impressed her the most was the fact that Sam is so aware of what is going on around her. She said that this is a great indicator that there is the start of cognitive function being on track. We are still working to relax the muscles in her legs daily and now we are working on here arms to help get her to a point where she can eventually lift her head while on her belly. We are currently trying to get here PT and OT worked out where they will come to the house to save us one more doctor visit in Winston. She had been a little restless the last few days, with a massive amount of drool, and chewing on anything she can... Yes we are working on teeth. Bless her heart! Her big sister has loved being home with her this summer and requests daily Sam time where she reads her books, they watch tv together or they do Gwen's activity of the day. The best part is being able to see the smile that comes across Sam's face when she is with her sister. It is priceless. One of the most exciting updates is that we are going to be doing Sam's Baby Dedication at Salem Baptist Church this Sunday, July 24th at the 10:55 service. Please know that we would love to have anyone who would like to join us in dedicating Sam to our Amazing God! You have all been so wonderful in this journey with our family and we can't even begin to thank you for everything. God has answered so many prayers through this precious child and we can't wait to give Him all the praise! As I am finishing my last week of summer, I look back to see that I have not worked since the middle of March. I also have to once again thank the many, many people who donated days so that I could be with Sam through her surgeries, hospitals stays, and maternity leave. I only wish I could thank each of you individually! Wishing everyone a happy last week of July 2011! Time sure does fly!

June 23rd- 12 Weeks Old

It is so hard to believe what we have been through and been blessed with in just 12 weeks. Today we met with Neurology. One thing that I had to learn the past few months is that there is the difference between neurology and the neurosurgery. We see neurosurgery for her shunt and neurology for her seizures. Yes, I am sure all of you medical people are now shaking your heads at me. I am slowly getting all of this stuff. Anyway, they decided to wait 4 months to do a second EEG. At that time we will talk about taking her off her seizure meds. The cause of the seizures she had is really unknown. We know what they look like. We know that it started in the left side of the brain with her right hand moving but we don't know the cause. It could have been the infection, in which case she would be able to get off meds eventually. It could have been the shunt and/or drain irritating the brain and it could also have been caused by the Dandy Walker Malformation. Only time will tell. When doing her check up the doctor had some concerns about her hearing. She passed two hearing tests in the NICU which was before the infection. Today she noticed that Sam was not responding to certain sounds. This was also something they looked at when she had her CDSA evaluation last week. The neurologist said that the infection could have caused some damage. So we will be having another screening soon to check to see if there is any damage. She  did seem very pleased with some of her social interactions like social smiling which was a good cognitive sign. Next on the appointment list is next weeks physical therapy appointment. The neurologist was glad that she is already receiving physical therapy because she keeps her legs stiff. We have been working on this everyday and I hope that the PT can see a difference since that last time we were there. Tomorrow we are going to try a very short visit to the pool. It will be Samantha's first pool visit. Praying it goes well!



Everyday is a blessing. I see God teaching me lessons through both of my girls everyday. I pray that I can continue to remember each day what a precious gift life is and how thankful I am for the people God put in my life. I also am thankful for the many people that God has sent me through this process! Some were close friends before this and through the past year He has shown me just how special they really are. Others He has placed in my life through this journey and I am so very thankful to now call them friends!

Sam still doesn't quite know what to do with her big sister!



June 10th- 10 Weeks Old

God is so very good! Last week was a busy week but it was worth it! We went to our first appointment on Tuesday which was Physical Therapy. The main problem she was seeing so far was that Sam keeps her legs stiff. She showed me exercises to do to help relax her legs and so far so good! We also had her 2 month shots on Thursday morning. Shots are horrible but her check up was good. She had gained about 3 pounds since she had gotten home from her last stay in the hospital. That afternoon we had an appointment with Neurosurgery and her doctor was very pleased with how she was healing from her last surgery. He also felt her head and thinks that the one shunt is working so well that she most likely will not need the second shunt!!! YEAH! It is so nice to go to the doctor and get good news. We have now been home 5 weeks and are starting to get in a groove. She is such a blessing. She has discovered her tongue and she smiles all the time. Gwen loves her so much. The first thing she does when she wakes up in the morning or gets home from school is to see Sam. I often find Gwen reading or singing to her if Sam is in her crib. It is a blessing to see the love between them already. I really think the sweetest thing is when Gwen pulls out her new Bible that she received at church for graduating Kindergarten and reads to Sam. Looking forward to spending the summer with my girls and feeling blessed beyond measure! I pray for a blessed and safe summer for all of you too!

May 28th- 8 Weeks Old



It had been a few weeks since the last post and Samantha Grace has been doing really well. We are now three weeks since her last surgery to put in the new shunt with no sign of infection. Her head is healing really well this time. The doctor said that most of the time you would see signs of infection or problems within two weeks of a shunt being placed! What a blessing it is to see that time come and go! If we can make it to two months our risk percentage goes down greatly. This week we have her 2 month shots, an appointment with physical therapy and an appointment with her neurosurgeon. I have so much peace in my heart right now about Samantha. Not sure what physical and medical obstacles we still might be facing down the road but God has shown me that we can make it through whatever comes our way. This week I was thinking back to the weeks and days before Sam was born. Travis and I were so nervous because our doctors on several occasions told us to plan for the worst. They told us that there was a chance she might not make it out of the delivery room. This week I finally took some of her baby items out of boxes and put them together. Travis and I had decided that we would keep them in boxes... just in case something happened. It brought tears to my eyes to think back on where we had been. I can't even begin to tell you what a blessing you all have been in our lives. I really believe that our Samantha is a true miracle and your prayers have made a difference in her life. I had made a video for my DES family a few weeks back and felt that I needed to share one with all of you. Your support has meant so much. Thank you for being a blessing....

May 13th- 6 Weeks Old

So we are just so very blessed. Samantha was able to get her new shunt placed last Friday. It was a little bit of a rocky road because her surgery got bumped for an emergency so she went without eating for over 10 hours. This was not fun for a little thing her size. She came through great and they were able to place the shunt in the same place as the first shunt. On Saturday morning she went for her shunt series scan and her MRI. They were going to let us come home Saturday but decided not to after seeing the MRI images. They knew she had some bleeding because blood had been coming out in her external drain but they saw more blood than they had expected to find. The main problem that this could cause is a failed shunt due to a blockage. The doctors also told us that she is at a higher risk of a shunt infection because she has already had one infection. A failed shunt or an infection usually show up one to two weeks after a shunt has been placed. So we are watching our little miracle like a hawk these days. They did tell us that if we can get past two months without problems our chances for infection and problems go way down. We were able to bring her home on Mother's Day... what a blessing that was and she has been doing great since. Gwen has really enjoyed having her back at home and is reading to her constantly. There has been so many times this week where I just have to smile. I think of where we have been and where God has taken us....BLESSINGS are all I can see. It is amazing to me that she is already 6 weeks old. I was listening to my iPod the other day and the song Don't Blink by Kenny Chesney came on....it really does go by quickly. We have an appointment with our neurosurgery doctor on Monday afternoon and an appointment with Physical Therapy at the end of the month. We will also be seeing a genetics and neurology (for the seizures) this summer. We are so very thankful for all the wonderful staff on the 6th floor Intermediate at Brenner Children's Hospital for three weeks of wonderful care. We also thank you all for your continued support, love and prayers. You are all so amazing! We are just asking Samantha's prayer army to say a prayer that this shunt has no problems so we don't have to go through this all over again anytime soon!



May 5th- 5 Weeks

Samantha Grace will be in surgery tomorrow morning around 10:45 to get a replacement shunt. Please say a prayer for her and her doctors. If all goes well we could be home as early as Saturday. So excited about bringing her home for the second time. The nurses, CNA's and the rest of the staff in Peds Intermediate have been so wonderful. Very blessed to have had such great care but I pray the only time we will see them in the future is just for visits when we have to come for doctor appointments! I had asked you all to say a prayer for Samantha's neighbor Carter. Please continue to say a prayer for him and his family. They were given the news today that the tests came back positive and the outlook is not good. My heart breaks for this family! Carter's smile would melt your heart! Hug your children.... remember you are blessed... and pray for miracles! Will try to update tomorrow....
Love you all-
Travis and Steph