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!