Trinity's Special Day!!

I wanted to share this moment on the blog so I would have it forever! Yesterday Trinity had a playdate with her friend Sophie. This is special because Trinity has never been invited to a playdate by herself! She enjoyed many things about this day, but one thing she talks about the most is playing with Barbies in the pool! See Aubree is invited to many different playdates, and Trinity always watches in the background as her sister leaves. This time Aubree watched as Trinity wheeled off for her special day! Thank you Anne for making this a special day for Trinity!! She's still talking about it today!

Home!!

Trinity came home tonight around 5:30!! This is wonderful news for everyone. She's sound asleep in her bed and it feels good to be home!

Sunny Days!

Trinity and I are enjoying the sunshine coming through her window! It looks nice out there! Trinity is doing great! She had a really good night and we both got some sleep, which is always good. We had a few issues yesterday with vomiting and some headaches, but she seems to be doing much better this morning! This laying flat is very difficult for a kid that wants in her wheelchair and is ready to go visit all her friends here at Gillette! One more day of laying on her back and then hopefully we are good to go. Dr. Partington came by to see her last night. She has some swelling in her left leg and are not sure where it is coming from. Hoping nothing is fractured, but we are thinking it may just be fluid from surgery. He should be stopping by sometime today and going to talk with Dr. Walker about it. We would love the continued prayers, but are asking you to add a special little boy to that list. His name is Reece and over the past few days he's been fighting for his life. Please read the posts from his parents @ www.likeoliveshoots.wordpress.com. Pray, Pray, Pray!!!

My "Superhero"

Surgery went great! Dr. Partington was afraid that he would have to work with a lot of scar tissue, but he didn't and that made the surgery go a lot smoother. He's definitely concerned that we will be doing these often until she has a spinal fusion in the future. Not something we wanted to hear, but something we expected. She's been having spinal headaches that seem to be pretty painful, but they are staying on top of the pain meds and controlling the pain. The next 72hrs are the hardest for Trinity! She has to lay flat for 72hrs which helps with the headaches and so there is no leaking of spinal fluid. After 72 hrs she will be slightly raised until they know that she's having no issues with any leaking or added vomiting. With every surgery that Trinity goes through she amazes me everytime how strong and resilient she is! She's my "superhero"! She wore her Superman g-tube cover that was given to her from Will's mom Rebecca. Will is definitely missed, but always in her heart! We are blessed beyond measures with the outpour of love and prayers! Thank you!! Trinity is resting comfortably in her bed, so I think I should probably go to sleep myself!

Surgery in 2 Days

Trinity is scheduled to arrive at Gillette on Wednesday @ 8:30, with a 10:00 OR time. Not sure how long the surgery will take, but I'm guessing 2 hours. We will try to post on Wednesday after Trinity gets out of surgery and settled into her room. We appreciate all your love and prayers!

Tethered Spine

So about two weeks ago I had this long post typed out and ready to post on here, just FYI God did not gift me with the ability to write beautiful things so when I write a post it takes me forever and I have to read it over and over until it is perfect. Well after perfecting my post it vanished and was NO where to be found. I got frustrated and have not returned to the blog until today. So I apologize for the delay in getting this post wrote. Trinity's first lengthening went great with no problems. She also had a MRI done to look for a tethered cord which they found. This has been causing some issues with her legs and is showing some spasticity in the left leg. They are not 100% sure this is what is causing the problems. So on June 20th they will be untethering her spinal cord. She had this same surgery back in December of 2009. It's not real common to have to do this surgery more than once, but they think that with the spinal rod and the lengthening this will continue to happen until she gets a spinal fusion done. So we are looking at a untethering surgery at least every one-two years until she gets the fusion done. Trinity has been in a Special Needs T-Ball league. It has been such a joy to watch her play and the field that she plays on is designed just for these kids. I wish everyone could watch these kids play. It's so humbling and inspiring to see the joy these kids get when they hit the ball, the crowds cheer and when they reach home plate the crowd goes wild!!

Spinal Rod Lengthening

I can't believe it's already been 6 months since Trinity's last surgery. So now it's time for her first rod lengthening. It's scheduled for this Wednesday, May 2nd @ 10:30 with an MRI following. This should be a pretty simple surgery with an OR time of 2 hrs and the MRI taking about an hour. She will need to be in the hospital overnight and has a day full of appointments on Thursday. This past Thursday Trinity had her appointment with Dr. Ward, her PM & R(Physical Medical & Rehab)doctor at Gillette. We've had a lot of issues with her left leg in the last few months. It will get stuck, be tight and hard to move and bend. Dr. Ward is concerned that it could mean tethered cord again. This is a surgery she had back in December 2009. It's usually not common for them to need a repeat untethering surgery done, only 10-20%, but when has Trinity ever fit in the top percentile?!? we will know more for sure on Wednesday after they do the MRI of the spine. My prayer is that it's not a tethered cord and that it's something that can be fixed without surgery. This week was our "Special Angel" Will's 5th birthday. I'm sure he had a great celebration in Heaven! His mom, Rebecca, mailed us some pictures of him and some with Trinity and him together. Trinity wanted them in her room and looks at them often. He has a special place in her heart and I know without a doubt that he's watching over her. With every scary thing she will face he will be there holding her left hand as Jesus holds her right!