Ok we made it back! 1200 miles in 4 days, all done in a little blue jetta. As I was driving home today, I realized how many emotions flow through you as you travel so many miles. When there are children, those emotions can sometimes messy! Our last leg of the journey was not the easiest. Thank goodness for my mom who kept helping with Chan and Brooke. Poor Brooke was hurting and crying, and Chandler was hungry and tired of his car seat. But we made it! Thank you for all the amazing prayers that lifted us up and carried us home.
We made it through all the rain on Wednesday, and checked into the hotel. We were up early on Thursday and made our way to the hospital. Her test was supposed to start at 9. They had an emergency, and Brooke got bumped. Poor little thing had no breakfast and no liquid. She was a trooper and fell asleep waiting. Then we got a visit from Michelle, the child life specialist, who helped her through the surgery. It was so awesome to see her! She again helped Brooke get ready for the MRI. Poor girl just hates having the mask put over her face. But she did! So proud of her! And I am so thankful for all the staff at North Shore! They really help my baby girl feel comfortable!
Friday we went to see Dr. B. Brooke was tired and ready to go home. She asked me so many times if we could go home and see her daddy. After giving all the info over the past few months to the nurse, we saw the doc. He told us right away that he was pretty confident Brooke needed the surgery to de-tether her spine. The problem is she does not have the diagnosis of possible neurogenic bladder from her urologist. She meets all the other criteria, just not this one. But she is not able to use the potty and the doc has to teach me to cath her. Dr. B said if we could just get this from the urologist, he feels that the surgery would fix this problem. He also feels that it would help her severe leg pain. SOOO I need to get this figured out with her urologist or unfortunately find another one. How can I just sit back when there is a surgery that could help her overcome this?
The next thing he told us was Brooke's cerebellum is still in place. Which is great. But, we did find out that she does have some instability. We knew this may happen after surgery. A ligament that runs in front of the brain stem is enlarged. Thankfully Dr. B did not have to cut through the C-1 vertebra during surgery. If he had done this, she would have Cranial Instability and required a fusion. As it is right now, she just has a wobbly head. So we have to be very careful. If she is not, it could lead to Cranial Instability and fusion as a child. Is hope is that we can wait until she older and her neck does not need to grow anymore. Then she may need the fusion. But if we protect her neck this may get better, and it may not. We received the laundry list of things she can't do- gymnastics, tumbling, bouncy houses, trampoline, and anything that could jar her head. We have to get a collar for her. She will use this in various times to protect her neck. Mostly car rides. We also purchased her a more supportive booster seat to help protect her neck. She also needs physical therapy on her neck.
We made a quick detour to NJ to visit family. What a nice time to sit and chat with fam. Then back on the road today. Driving I thought so much about my little lady. She is such a fighter, and I am so proud of all she has done to get through this. She is sassy, sweet and wonderful! I know whatever obstacles come up she will just keep flying over them.
We could not get through this without prayers and support from all our friends and family. We love you all!