Riley's spine MRI was clear so we move forward with her brain surgery on Monday. It is expected to last 5-7 hours. She will have another surgery mid to end of next week to put in a Gtube and perform a fundoplication.Tonight we were able to take her off of IV and leads and give her a wagon ride around the floor. We also enjoyed a yummy dinner brought by Derek and Amy (Jaron's bro and his wife) and a cheesecake brought by my uncle. Yum!
Kuddos to Grams and Papa who took Avery and D&A's kiddos so we were able to enjoy some time with them tonight. Avery is in heaven being with her cousins and really is no longer interested in visiting Mom and Dad. This is really the best thing for her and we are so grateful that this time is filled with fun for her.
Thanks also to my Mom and Dad who stayed with Riley this afternoon so Jaron and I could get out of the hospital for a little while. After an hour long conference with the neurosurgeon we needed a time out.
The next 2 days are filled with waiting, but I want to make them last and am not really anxious for Monday to come. I think these two days will be the last time we enjoy Riley's smile for a while.
Wagon ride!
You probably don't remember me, but I went to Central Christian with my family many years ago. My sister, Kim, did Children's Church with Jenni's dad. I am also friends with Darcy Belleza. Anyway, I was deeply touched by your posts regarding Riley. Please know that I will DEFINITELY keep you and your entire family in my thoughts and prayers. ~Nancy Robbie Chin
ReplyDeleteHi, My name is Gayle, and I am a friend of Amy Olson. Actually,Amy's mom,Diane is my best friend,and I have loved Amy since she was two! I don't know Derek as well,as we live in South Dakota now,but I have met him and he seems so great! I want to let you know that I will be in prayer for Riley and your family. I hope you have a good weekend and that Riley will enjoy her cousins,and that you will feel loved and supported by friends and family. I will get some of my 'prayer warrior' friends to pray,also,and we will pray for Riley in our church services on Sunday. So now you have family in SD now also!
ReplyDeleteLove in Jesus,Gayle Klinsky
Sending you and your family good thoughts and prayers. I am amazed at your ability to find blessings in this time. I'll be holding you guys in my thoughts.
ReplyDeleteAmy (Micro)
Jaron & Jenni...
ReplyDeleteCaroline Kichner sent me your blog link noting that Jim and I might understand what you are going through. Do you remember us from your short-lived MV days...the Brummes?
I read your entire blog history and walked with you through your precious Riley's "tumor adventure." That's what we call our youngest son's journey with HIS brain tumor. He was not a sweet, little baby like your Riley when the "adventure" began, but he was our "baby" and he was our wonderful 15-year-old. I can only imagine what a mother's heart goes through as she tries to deal with her child's inability to even begin to understand what's going on. We were able to talk with our son (TJ) and he knew what was happening. It had its own inherent challenges, of course, but as a parent (mother or father), I know it is beyond difficult to watch your little one suffer in any way....and without understanding why. Our minds wander to the worst possible scenario and fear can overtake us. Thank God she is too young to think in that realm; she just knows she is uncomfortable (or in pain), and she probably just wants to go home. At that young age, they are so helpless and as parents we are so helpless to do, or change anything. We can only try and comfort them and love them....
I am praying for you and trusting God to envelope you in His indescribable arms of peace and love. The day we found out the news I cried out to Him and said, out loud through tears, "Just let me know you are here; let me know you are in this!" And He specifically answered me....He showed me in so many details that would take too long to describe in this "comment" space. I was at peace from that moment on, which was NOT coming from anywhere, but God. My mother's heart and brain would have been utterly freaked out and fearful. From that point on, I understood experientially what the words "God's grace is sufficient" really means.I know how to pray for you both. I needn't say more; you know I do.
Take one day at a time...one hour at a time. Do not allow your mind to race ahead. Surrender all to Jesus and rest in His arms of love, each others arms of love, and the outpouring of love and support from family and friends (which will blow you away...before you know it, there will be people all over the world praying for you and your precious Riley. The body of Christ is such an incredible support!)
I will close by telling you that TJ is now 21 years old. He is healthy and strong and has an MRI every 6 months to make sure the tumor does not reappear. Actually, that time frame was just changed to once a year, and we feel certain that someday in the future the MRI's will discontinue all together. Praise God!
There is much more to our story, and someday we will have to visit with you and share all that God did. You would be very encouraged. For now, I think this is enough to let you know we are right there with you and so is the Father.
Under His Wing
and With So Much Love...
Tracy Brumme
PS I just checked the box that let's you e-mail me. Feel free to contact me and ask any questions, or whatever. I would love it if you gave me your e-mail address and I will share my phone number with you at that point. I learned a lot through our "adventure" and I am happy to share anything that might help. You are at a great hospital getting great care! We were at UCSF and felt that we were getting some of the best care in the country. We are so blessed to have Stanford and UCSF close by!
ReplyDeleteMichael and I are just now reading about Riley. We were definitely keep your little girl (and the rest of the fam) in our prayers tomorrow and as she goes through the recovery process!
ReplyDeleteJenni, we've never met - but I found your blog through Diane Davis.
ReplyDeleteI'm so sorry that you are having to walk this horrible path. I cannot imagine what you are feeling...
I will pray for you; I have already started. I'll pray for healing for your beautiful Riley, for peace, courage and rest for all of you.
I too found your blog from Diane. I just wanted to let you know that I will be praying for your family....especially Riley. I can imagine the roller coaster of emotions....I will pray for peace as well....
ReplyDeleteI remember seeing those wagons full of young patients and their siblings during our time over there. It always made me smile. We are so blessed to have such an amazing place so close to us. I have such precious memories there and pray that yours are the same. Please let us know if we can help in anyway. I know you have family but feel free to ask - run errands, bring meals, come get avery to play for a few hours. thinking about you guys and praying for that precious little girls constantly. May you feel that hand of God the whole way through this journey!!!
ReplyDeleteJenni,
ReplyDeleteThank you for being so open and sharing your journey with your family and freinds concerning your precious Riley.
I pray that you are experiencing God's comfort and peace that only He can bring in times like these.
I am so glad that you are surrounded with family, friends and church folks. It appears that you are being well taken care of, which is exactly how it should be.
My prayers and love are with you all.
Love, Amanda
Thank you for keeping us updated on everything. After thinking about you all day, it's nice to hear the little details of what is happening. I'm praying for good sleep for you tonight so you can soak in more of that sweet smile tomorrow.
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