The news in a nutshell from today is that Dr.Lumann, the orthopedic surgeon says that the curvature in Havyn’s spine has gone from 46 degrees to about 54 degrees. Theres about a 6 degee plus or minus on that number, but to say the least, the curve in her spine is getting worse. We suspected this, but disappointing to see. The good news is we’re not talking surgery right away. He did say confidently that she would be facing surgery in the future but wants to push that off as long as we can. Her body is so tiny that it is hard to fit the rods and screws in her back and she has so much more growing to do. Also, young bones are soft and they like to wait for the invasive stuff as long as they can.
SO, the next step is… casting. (Insert deep breath here.) Right now we’ve braced her for about 12-14 hrs a day but because the curve is getting worse he thinks casting is the next best thing. The cast would be fiberglass (think broken bone type cast) and is not removable. She would wear it for a couple of months at a time then reevaluated. This is a procedure where she would have to be sedated while they cast her. We may be looking at multiple casts over the years. NF1 related scoliosis is so hard to predict. So the Drs can’t be certain how she will respond (I can tell you she is going to be totally ticked off that it isn’t removable) to the casting, but it is the next best thing. That said, they have had great results with casting and believe he can get her curvature down in the 20’s range which will help to hold off the surgery for a while.
This is not the news we wanted to hear. To be perfectly honest we wanted to see a perfectly straight spine on the xray this time. We were really hoping for a miracle today. Casting seems super crazy hard and my momma heart can’t even bear to think about what that is going to look like for us, BUT not having to have surgery right away, OR EVER- is a miracle. SO we chose to be grateful and thankful for that!!!
I recently gave my testimony at womens bible study at our church. I shared how this journey we are on feels like a roller coaster. When we give our lives to Christ we don’t know where that track is going to take us (ultimately we do, Heaven) but we trust that HE is leading the way. Sometimes we will be on a hill and everything is great and you can see all around and sometimes we are in a loop and life is crazy and we are doing our best to keep our hands and feet inside the cart. Right before my moms surgery a month ago I felt like we were getting ready to go through a tunnel on this roller coaster. If you have ever been in a tunnel on a roller coaster, it is scary and dark. Twists and turns and no warning of which way you are going. BUT you stay in the cart and hang on. Well, that is what it feels like. We are staying in the cart and holding our hands in praise through the darkness. HE IS STILL IN CONTROL, even when things feel completely out of control. This picture was part of my devo this morning……
It is easy to praise God in the good times, it is harder to praise in the dark times. In the dark is when our light shines the brightest. It is hard, because we have an enemy that wants to put our light out, but we are holding our hands up in praise! We have a God that has redeemed death and sickness. What the enemy wants to steal, he ultimately can’t, we have eternity! What a loving God we have that he would leave perfection and die a terribly painful death so that we could spend forever in paradise with him!!!??? I pray that you KNOW HOW MUCH HE LOVES YOU!!!
The Lord speaks to us through our kids all the time. Tonight at dinner Havyn kept saying, “waiting without complaining” over and over again. ( Thanks SE!KIDS) Then she burst into, “This little light of mine, I’m gonna let it shine!!!!” Yes, sweet girl you are letting it shine, more than we even know.
SO thankful for so many of you who have prayed, texted, brought dinners, taken care of our boys, etc. It takes a village and boy we are blessed to be in an incredible village!!! We LOVE YOU!!
Prayers going forward
– That Havyn’s back straightens out before having to even be casted!!
– MRI on January 2nd. That the tumors haven’t grown. Also, that all the insurance and financial details work the way they need to.
– Chemo starts back up on Tuesday. UGH!!!
– My mom ( Jenny) starts chemo on 22nd. For her spirits and to tolerate this terrible drug and for our family as we adjust to this change.
IF you are still reading, congratulations, you truly are a good friend!!!!! 🙂 🙂 LOVE YOU!