The Tortoise and the Hare

It’s hard to be a parent. It’s challenging to make hard decision when it comes to your children. With that said, Jerad and I decided not to get the Botox shot for Vaughn’s torticollis. After a couple discussions and a little bit more research we felt like we wanted a little more time to try to stretch and strengthen his neck. Vaughn has finally turned the corner and is eating 100% table food and we are just so proud of him and grateful that we just needed some more time before taking the extreme measure. We won’t be going to the swallow study after all and that is a huge blessing! We did take Vaughn to the Botox appointment though so we could talk to the Rehab doctor about our concerns and wanting a little more time and she actually agreed with us. We had taken Vaughn to get another x-ray of his neck and spine and she was pleased to see that his neck wasn’t as severe as she had originally thought. We will go back in 2 months to see if we made any progress with more aggressive stretching and re-evaluate at that time if we should schedule the Botox shot. We did learn that there is the start of some mild scoliosis. There isn’t anything we can do for that right now so we will just continue to pray him out of it.

We also had another helmet scan on Vaughn and he grew another millimeter. We didn’t get a print out this time as the moves continue to be small. At first I was discouraged by such a small move, yet again, but have been reminded that we are still moving and that is progress. Since Vaughn is older and most kids are out of their helmet by this age, we are up against time. Time though isn’t an obstacle for God. As I was praying this morning over the torticollis and the helmet, I was thinking of this new toy that the twins received from some dear friends of ours. Michele, Hannah, and Logan had come over to play on Saturday evening and they brought this animal toy that sings and one of the songs is about the slow turtle… And Vaughn loves this song, he plays it over and over and it is driving us crazy (Thanks Michele!) And from this toy, God literally placed the story of the tortoise and the hare into my head. I of course started to cry as He gently reminded me that thought the tortoise is slow, he finishes the race. His strength and diligence teaches us that the journey is the destination. So I will continue to embrace Vaughn’s helmet, his helmet of salvation and trust God that His timing is perfect.

With all that said about Vaughn, I must tell you that Asher is starting to sign! Sign language is important to us and I can’t begin to say enough wonderful things about our team of therapist who are involved in our family’s life on a weekly basis. Ms. Susie who is our PT has such a gentle heart and I believe truly loves our boys, had her son go to the library for us and rent us “Baby Signing Time” DVD. She dropped the video off on Thursday and on Sunday evening, Asher signed for milk! We were overjoyed and couldn’t wait to tell the team. We have been signing a couple signs with the boys for many months now but Ms. Susie knew their love for Baby Einstein and found a video that worked. Last Thursday as Vaughn was having PT and Asher and I were reading a book (this kid LOVES books), we came to the page with a dog on it and I said “dog” and was about to turn the page when Asher said “dog” and did the sign at the same time. Susie and I looked and each other and started clapping and laughing with joy as dog is one of the signs from the video.

I am so proud of my sons. We are on our own timetable and though it can be hard on us, each milestone is a reminder that a timetable is the average and Vaughn and Asher are anything but ordinary. To the Tortoise and the “Dog”, well done!

One Down and One to Go!

Asher has graduated out of his helmet! His last day wearing it was February 25 and his final scan showed that his head circumference was measuring at a 5 which is the goal when we started this journey 4 months ago. His head isn’t perfect but it is so much better and the Doctor thinks that in time, as he continues to grow it will get even better. We are so blessed that insurance approved a helmet for him and that we went ahead and did it as he shouldn’t have any issues in the future. It was worth the time and energy!

Before helmet                                                                 After helmet

Vaughn’s third scan showed some growth but is still at a slow pace (1 mm of growth). We knew he would wear his helmet longer as we have more shaping to do. I am just praying we are out of helmets by the summer when it gets hot. Vaughn has been eating so much better lately and that is a huge answer to our prayers. He eats about 95% table food and this progress has simplified my life and given me the opportunity to start feeding them at the same time! We just might not have to do the swallow study after all. Asher is using a sippy cup now too and so he has become totally independent and really loves to feed himself. Vaughn is holding his cup and understands the concept but still thinks it is a teething item but we are close! Now that Vaughn is eating better, we are hoping that we will see bigger changes in his helmet scans.

Jerad and I took Vaughn for his final blood draw and he gave a urine sample so they can test every possible outcome to try to determine the reason for the delay in the boys. We won’t know much for at least 6 weeks as this testing is expensive and time consuming. Our appointment with the Rehab Doctor went really well, I think it went so well because Jerad and I really like her. She goes above and beyond to make sure Vaughn and Asher have the best care. She is going to continue to follow Asher’s progress but since the helmet worked so nicely and he is starting to bear weight on his arms and legs there isn’t much more she can recommend. She did order another x-ray for Vaughn as I am still concerned about him having scoliosis and while we were there, we also took an x-ray of his neck to see if the torticollis is getting worse as it sure looks that way to us.

The torticollis…. Probably one of the main reasons why Vaughn has such a hard time eating. After much discussion, talks with our therapists and chiropractor (though he wasn’t as thrilled about this as PT and OT) Jerad and I have decided to take the next step in trying to leave the torticollis diagnosis in our past.

 Botox. Yup, Botox for babies.

 I know what you are thinking, we had those same thoughts but hear me out. Botox has been used in the medical industry for many years before Botox was commonly known for its cosmetic effect. The medicine is used to treat spastic or tight muscles and Vaughn’s neck muscles are really tight. Our rehab Doctor will inject the medicine into the muscle to help relax and stretch the muscle. This procedure is commonly used in children with cerebral palsy also. Once the medicine is injected into the muscle the medicine blocks the signals from the nerves to the muscles and weakens the muscle contraction and this causes the muscle to relax. The Botox isn’t permanent and lasts on average of 3 months and the effects will wear off gradually. The side effects and risks are very low and Vaughn will have a follow up appointment 2 months after the shot to determine if the Botox is working and just so he can be monitored closely. Vaughn is getting the Botox tomorrow, so if you could be praying for us as we begin yet another chapter to our already incredible story, we would be grateful. I am standing firm on the hope that Jesus gives and placing that hope in Him and not a medicine. I am confident in my expectation that He does all things for His glory and healing Vaughn of his torticollis, through Botox would be another miracle that would not go unnoticed or unshared!