Updating on Brayden

We wanted to post some details on our blog that we had emailed out to our freidns and family. We figured there might be some people that we didn't have their emails for that follow our journey on here. 

Sent December 3, 2012

To my most beloved friends and family,

  I wanted to take a moment and send you a personal email asking if you each wouldn’t mind taking some time this Friday morning to pray for our son Brayden. As most of you know, back in June Brayden’s MRI showed that the Arachnoid cyst on his spine (found at birth) had started to grow and compress on his spinal cord.  Our neurosurgeon told us at that time that his spinal cord was 7 mm in diameter and the cyst had compressed in 2 mm.  This could, in turn, decrease blood flow and oxygen to the brain, affect his neurological response in his extremities, and affect the function of his bladder and kidneys.  At first Dr. Roberts suggest that we go ahead and schedule surgery, but after an additional consult with the radiologist we determined that we would look to see if it was actually having any of the above mentioned affects first.  After thorough testing, we learned that his oxygen saturation in the brain was normal, as well as his bladder/kidney function and neurological responses. We were given a 6 month pass and asked to come back in December for another MRI. This was great news as this surgery is extremely high risk. I will spare you of the risks during surgery and the survival stats but it is a very complicated surgery that he could have a hard time pulling through and recovering from.  

 My precious Aunt Nette often posted and shared throughout her battle with Ovarian Cancer and I have recently began to go back and read her words to draw strength and encouragement from. During her battle, she continued to give thanks and praise and glorify the Father, despite her struggles.  Her words have of late become some precious to me. I share “We go before His Throne with petition, to learn His will and to give Him thanks for His hearing our prayers. We are dependent moment by moment upon Our Lord. He graciously tells us “whatever we ask in His Name, He will do it that the Father may be glorified in the Son.” John 14:13 and “Those who Trust in the Lord, shall not be disappointed” I Peter 2:6  God is our refuge and strength, a very present help in trouble.” Psalm 46:1 This is where I plant my feet and take my stand. The circumstances are too bizarre to try to untangle. All that matters is that I keep my focus on Jesus and to know He is with me to deliver me from all of my trouble.” She once told me that what kept her going was keeping her eyes on Jesus and His calling for her life and not on her circumstances.

 This Friday morning, we will be taking Brayden back to Cook Children’s for a repeat MRI to see how the cyst has developed over the last 6 months. If there is still compression, we will go fairly quickly into surgery.  We have recently had some very sweet moments, surrounded by friends and family, just covering Brayden in prayer, laying of hands, and anointing with oil; that our gracious Heavenly Father would hear our cries and heal our son.  We have directly prayed that this water filled cysts would just rupture and be absorbed by the body so that Friday morning his MRI would come back clean and normal. We have specifically prayed that no surgery would be required.  We have been comforted by The Spirit as David and I have been lifted and covered, experiencing the unexplainable “the peace that passeth all understanding.”  We now would like to call you stand firmly with us in the Victory that we claim through the blood of Christ. We realize that no matter what the outcome, this Victory remains; when Jesus defeated the  grave and our eternal salvation was won. We would like to ask that you boldly approach our Father’s throne and pray for the dissolve of Brayden’s cyst.  We also ask for peace and comfort for David and I as we go through the day on Friday. If you would please commit to praying for us for just 10 minutes anytime from 8:00 am – 11:00 am, as Brayden will be under during this time.

We can not express our utmost gratitude and thanksgiving for having the ability to live in a nation where we are free to call friends and family to prayer and having the blessing of people in our life that we can call on during these times. Many of you have given us so much courage and encouragement over the last 3 years, .  Thank you for continuing to laugh with us in the hysterical moments, put your arms around in the tough moments, and love and pray with us through it all.  

With sincere love                                        David & Kelli

 

 

Emailed December 13....with joy and thanksgiving!!

First and Foremost, David & I would like to express our most sincere gratitude to the overwhelming words of encouragement, prayers, and love that we are continually humbled and blessed by. On our drive home Friday from Cooks, I asked David how do you even begin to say "Thank you" to someone who selflessy gave up their time to pray for your child? Please know that we do not take that lightly and are so grateful for your prayers. We both experienced an overwhelming peace even before we started on Friday and we know that was a direct result of many people interceding for us, on our behalf! Thank you! Thank you! Thank you!! I pray that one day when you have a burden and need a prayer warrior to walk with you that you allow David & I the opportunity to return the favor and intercede for you.

 

I know that some of you may have seen the status on FB, but I did want to follow up with everyone that we had asked to stand with us. David, my dad, and myself took Brayden to Cook Children's in Ft. Worth Friday morning. The MRI went rather smoothly, however it did end up being a little longer scan that usual. Brayden came out of anesthesia fairly well and was soon eating a popsicle and snuggled on my lap talking to Daddy and Papa. We were dismissed from radiology in the prefect time to walk upstairs and check in for appointment with our Neurosurgeon, Dr Roberts. Before he gives us the results, he always give Brayden a very thorough neurological assessment and does a clinical evaluation. He spent some time measuring neurological responses, oxygen saturation, and watching him walk, move, talk, and sing the ABC's. He said "I think we are looking very good. The cyst is still there but it has stabilized. There is not new growth or change and from the clinical evaluation, he seems to be improving. There are no visible signs that we are in any danger and I'm not thinking that the cyst has had any affects up to this point. Yes the cyst is still compressing, but I can not suggest a complicated surgery just from a scan when what I am seeing is a healthy 3 year old!" We talked for a while an we all asked a lot of "Maybe this or that" and "What If" questions just to ensure that we were all on the same page. We are so blessed to have this doctor that has been with us since Brayden arrived at Cook Children's just a few hours after he was born. He has a great bedside manner with David & I and takes time discussing and educating us. We recently learned from a contact I have at work, that he is highly regarded by his peers on the industry and is known for his continued involvement in research and development in his field. He even shared with us that Cook Children's is preparing to launch an new focus on Gate therapy, especially for children that have had a brain injury. He said that research shows that this Gate Therapy has significantly improved the stability and mobility of kids and he said that Bradyen was one of the first kids that he really wants to work within the program. I am so thankful that Dr. Roberts has a heart for our son, and we feel that he generally has a compassion for our family.

 

The plan is that we will repeat the MRI in another 6 months, no surgery for now. He said that he did notice that Brayden had a large growth spurt and it was interesting that the cysts had stabilized during that period. We are scheduled to go back in June 2013 and in the meantime, we monitor his behavior, reflexes, and oxygen saturation. We feel that every 6 months is more time for The Father to deal with this cyst in his time, in his way. Dr Roberts even said that if we can buy ourselves enough 6 months increments, you never know what kind of procedures or medicines will be developed between now and then. He assured us that even though he is a surgeon and he loves to do surgery, he will not carry us to that point until we are out of options and he will continue to explore ALL options for us.

 

David & I slept very good Friday night! :) And Saturday morning, I was suddenly ready to celebrate the Birth of our Savior! We enter this Holiday season with such an awe of who our Father is, the sacrifice that he gave so that we might become His children and heirs, that I have a certain reverence entering into Christmas this year I don't think I have had before. It's a small quiet place that the more I begin to understand the depth and unconditional love I have for my children as a parent, the more I understand my heavenly Father's love for me. This Christmas we will celebrate the birth of King that brought us hope of a future that one day we will be in eternity with Him forever. That same hope, carries our family through this journey, sometimes 6 months at a time! We pray that you and your family have a blessed Christmas. And just in case you may have stopped believing, He is still doing Miracles. We get to tuck one in bed every night.

Much love,

David & Kelli