Neurosurgeon Day

So, today is the day we have been waiting for! Everything exceeded my expectations! They weren't really set that high, so I was pleasently surprised when the "wait and sees" became a "let's get this done." I am so used to the doctor that treats me as "every other patient," and today I had a man who really wanted to know about Alex's life. I think all doctors can use this lesson: Treat each patient as a unique individual who has needs like no other. Use your expertise and experience to your advantage, but take into account the individual at hand. As a teacher, I don't step into my classroom and teach every kid the same. Why would a doctor walk in to an exam room and treat all patients the same. If I had a dollar for each time "most kids" started a sentence...I'd be that billionaire that I want to be so freak'n bad!

So here is the break down:

Tethered Spine: Alex does in fact have a tethered spinal cord. If you were to follow your spinal cord down it would stop in a cone shape around the small of your back. This area houses a host of a nerves that serve as a signal station to your lower body. From there you have a "thread" like structure that extends down towards your bottom and flows freely in your spinal fluid. Alex's "thread" is extra thick and has pulled his spinal cord down further than your average spinal cord would go. This "thread" does not flow freely, but is anchored at the bottom. It has caused his constipation, inability to walk, and some pretty decent pain. In two weeks we will go to Cook's where Alex will have surgery on the "thread" area. (I keep quoting thread because that is not the real term for it, but is how they refer to it). The surgery will require cutting out a small amount of bone and muscle to reach the thread. They will then cut out a small amount (about a centimeter) of the thread. This will make the lower thread fall down and waste a way, and the upper thread to flow freely like it should. He will be hospitalized for 2 full days to make sure that there is no bleeding or leakage of spinal fluid. If all is good, we can go home. We just cannot submerge him in water for a month...hello spunge baths. Right now the surgery is set for Sept. 22nd, but we might change that to the follow week due to some insurance reasons.

It will possibly correct his digestive and constipation issues, as well as, his walking. It will not change anything from his lower back, up. So this surgery cannot affect his speech or brain development in any way. However, we are on to something here! I am cautious about immediate results in his walking, but I know that with some physical therapy and extra hard "Alex" work we will get there.

ENT: As far as the ENT stuff, we discussed his problems with the neurosurgeon and asked his opinion. He suggest a new doctor, Doctor Palmer, and we have an appointment on Tuesday of next week. He thinks that Alex has vertigo. He would want the doctor too take a deeper look into his ears and the bones that surround the area for obstructions or reasons for an imbalance in his vestibular system. He also thinks that Alex needs his tonsils out because they are touching at all times. He said that today his tonsils were "Kissing" and that was probably a place to start looking in regards to all the infections.

So, I feel like we are on to something here. I am happy with the findings, and I am ready to take this stuff on. Another step closer! Thanks for all the calls and emails this week. We appreciate all your support for our little guy. He is happy as ever, and unsuspecting of everything that is about to happen. Sorry in advance Alex!! We have a big journey ahead of us, and are thankful for the many people that are helping us along the way. We appreciate all of you! I am thankful to God for each moment he stands with Alex and my family, and I pray that he is standing with each and every one of you each step of your journey too.