We had Bexley’s follow up appointment with Neurology this morning. Lindsey and I left with mixed feelings…as tends to be the case after doctor appointments. I’ll start off with the good news –
In regards to everything that we can control (doctor’s choice of words), Bex is doing very well. We haven’t seen any spasm like occurrences, she isn’t showing any other type of seizure activity at this time (knock on wood), and her last EEG reading looked good. The previous EEG found focal abnormalities that suggested epileptic potential; however, her most recent EEG showed no traces of these focal abnormalities. We were hoping for it to remain the same, but in a way the EEG actually improved! We are very grateful that it appears the hypsarrethemia is resolved for now and nothing has gotten worse so to speak.
The “blah” part of the appointment was really the appointment itself. These appointments are always a reminder that she has this issue and a potential for other disorders or delays in the future. The neurologist used buzz phrases like, “diminishing potential” or “developmental delays” and so on. He actually showed us images of her MRI done back in June and pointed out the white matter abnormalities. It’s one thing to be told the issues are there, but when you actually see them being pointed out on screen, it really hits you. He also mentioned he was a little concerned with her spinal alignment, but not concerned enough to order spinal X-rays. He just asked us to monitor that for the next several months (as if we needed one more thing to worry about). Despite his doom and gloom perspective on how her brain compares to other children her age, he did recommend us looking into books by Anat Baniel, who has developed a method of helping children awaken their brain, take advantage of the brain's ability to heal itself, and help them reach their full potential. If you know Lindsey and I, then you have correctly guessed that we have already ordered a copy! Knowledge is power and we are always looking for any additional ideas that we can try to help Bex.
We aren't naive about the fact that Bex may have a long, hard road ahead of her. We are fully aware that she is already experiencing developmental delays, which is why we have her in physical therapy. We aren’t afraid of what the future holds for her or us so to speak and we aren’t trying to dismiss it. It’s just a kick in the gut every time you are reminded of it by a medical professional.
I like to think of this situation as a balloon…a Bex Balloon if you will. We have this balloon and at times it gains momentum and starts climbing higher. For example, the last two weeks of physical therapy have been great! Bex has been doing much better at tummy time, she is rolling herself over from stomach to back, holding her head up better, and is even gaining strength to sit up with support from the boppy pillow. These improvements are night and day compared to before we started PT. We have been pumped with her progress and we get excited about the potential. The balloon is soaring to new heights!
Then we have an appointment with a specialist like today that just reminds us what we are dealing with from a medical perspective. Some of that air leaks out and that balloon gets a little deflated and it descends a bit. This will be the standard pretty much for the rest of our lives – we will have great weeks and progress and that balloon will soar. Then we will have follow ups or other issues come up that will take a little air out of it. So is the hand we have been dealt…
But you know what…there is no way Lindsey and I will let that balloon pop. No way in hell. A doctor’s prognosis can bring that balloon down a bit, but it won’t touch the ground. Not on our watch. We had a good talk after and we agreed that even though appointments like these hurt, we will stay the course. We will continue to take on whatever is thrown our way and help give our baby girl the best resources needed to excel in this world. If you know me, you know I am full of hot air…and I’ll keep that balloon flying!!!