Can I get an Amen?!?!?

Today we had our long awaited appointment with the neurologists.  I honestly had no expectations going into today's appointment, but after waiting months I was very anxious to hear his opinion and any thoughts he might have on Thomas' case.  We got there with plenty of time for parking and paperwork and was greeted in the waiting room by his NP.  I had met her before at church and she helped us in getting in contact with this particular neurologists and is genuinely vested in Thomas.  It was so nice to see her and know she was excited we were there.  We went back and Thomas was having nothing to do with them.  He didn't want his blood pressure taken, weight or height.  The nurses and I did the best we could and moved on.  The neurologists came in after a short wait introduced himself and immediately began playing with Thomas.  I have become accustomed to this as the professional plays with him they are evaluating.  Its really a neat balance to watch.  I sit quietly and just observe, but in my head I am cheering him on!!

It didn't take long before he began sharing with me his thoughts on Thomas.  He told me how handsome he was and how well he seemed to be getting along for his age.  He felt that there weren't very many delays except the noted expressive speech delay.  He also noted that his responsive speech was wonderful. So, I clarified as we discussed his hearing loss that he had experienced, etc.  We discussed the various therapies Thomas has been recommended for and which ones would be most beneficial.  We also discussed in more depth about the genetic testing and the possibility that it may uncover no new information or usable information to us.  I agreed and understood his opinion, but also didn't want to necessarily leave any stone unturned on the off chance that the genetic testing showed us something we might have other wised missed. He agreed that our biggest issue is going to be watching his anomalies in his spine and will have to continue to work closely with our orthopedic surgeon.  

We discussed and reviewed the MRI results noting that there were no issues with his brain and that is anomalies in his spine were not currently pressing on the spinal cord anywhere which was good news.  So, from his standpoint all things were fine and intact.  He did get the confirmation of Klippel-Feil syndrome, which I already knew but I finally have it on paper and got to hear the correct way to pronounce it.  We briefly discussed the precautions to be taken with this condition.  We then discussed his overall health and well being.  He was so optimistic and impressed with Thomas calling him handsome and very active.  He then commented that there was no need for us to come to him again unless a problem should arise in the future.  It was wonderful to hear even though he was a fabulous doctor and probably provides amazing care to all of his patients.  It was very uplifting to hear a doctor talk so highly of Thomas and give more compliments and no surprises.  In fact, he stated that we have probably uncovered all of the issues that he has and that with his care we should be able to monitor him and catch any additional issues that may develop before they become a larger issue.

On another note, during our visit he congratulated me on this blog.  I am never sure how to respond when getting a compliment on this blog to be honest.  So, I smiled and said thank you.  Then he continued to tell me how I have done a wonderful job of researching my son's issues and using all of the available resources.  He also reviewed the lists of specialists for Thomas and said that they were all wonderful and that he wouldn't change any of them.  He confirmed that all of my research matched what he had done and he had even taken it one step further researching Hopkins and found no new information.  I was quite humbled by his compliments to me but felt a sense of relief that I had this medical professional affirming and complimenting me on my work for my son.  We ended the appointment with him asking me to continue to share any information with him that I find out on our journey in relation to Thomas out of per interest and that if we ever needed him in the future he would be happy to see Thomas. 

Today a smile was put on my face from this appointment and I didn't want anyone to pop my bubble!! I do realize that I still need to speak with our orthopedic surgeon to make sure he was okay with the way MRI looks in respect to the bones and if there is anything that needs to be done at this time.  My prayer is that there is nothing to be done at this time but to continue to monitor his spine.  IF this is the case then we can seriously step back and enjoy the ride a bit more than we have the last five months.  We will also get the all clear for his surgery. 

I realize there may always be something to be concerned with or something to monitor but it truly appears that my greatest fears have been put to rest. The chances of missing something very significant is very slim at this point.  I am breathing a little easier tonight and I am hoping as we continue through this journey that I will have more moments like this.  Thank you again for your prayers and support.  Thomas and I are so lucky to have you on our team!!

Thomas as 'Jesus' during this years Live Nativity at our
church this Christmas. He is definitely a beautiful child of God!!

Infinite possibilities are born of faith.