Wednesday, October 15, 2014

What's New...Rolling Into Boston! say I'm overdue on a new post and update would be very much an truly sorry!! But, I'm back to try to briefly recap the past several months, which have been very eventful.
In June we went back down to the hospital in Orlando and the physicians fully sedated Selah and got some information and images of her airway, nasal cavity, and limited views of her oral cavity and jaw. Our hopes were that after these procedures and after gathering that information, we'd be able to know whether the doctor recommended going ahead with the jaw surgeries or whether he thought it'd be best to wait on them. The plan was to give him a few weeks to get some sort of game plan and timeline and to touch base through telephone and email.
So, fast forward a month later...I tried to patiently allow ample time before I began calling to inquire about his recommendations...and I began leaving message after message for him and his nurse to return my calls. I left several messages, without a response, over the course of several weeks...a month even. I eventually spoke with his nurse, more than once, and explained that we just wanted to know his recommendations and timeline or game plan for the jaw surgeries. And, still no response from him or no response from the nurse...who was supposed to discuss it with him and return my call. A month or maybe two months later, I called the hospital and tried go find out if I could just go through them to make an appointment. When I spoke with a representative though I was told that this doctor was no longer at this hospital and therefore not making appointments for any patients. I wasn't sure what to think other than this seemed to be a closed door...maybe permanently or maybe just temporarily...but a closed door and an answer to prayers that God would continue to guide us and let doors open and close in His ways and timing. It didn't and still doesn't make sense to us really because we liked this doctor and we got pretty far with getting diagnostic procedures and images done...yet it just came to a halt. Or I guess what seems like a halt to us but maybe just a pause to God...that said, let me fill in some gaps...
When we were down at the Orlando hospital in June, we also met with the Neurosurgeon and Orthopedic doctors.  We had appointments with them on another day and they were just monitoring some of Selah's conditions. During the appointment with the Orthopedic doc, he asked if we'd considered any more about the Policization surgery he'd previously mentioned to a previous appointment. We told him we hadn't given it much thought because we'd always been told (by different physicians) that these particular surgeries would not be a priority because the jaw surgeries needed to happen first. He recommended though that we seriously consider proceeding with these surgeries and having them completed by the time she is kindergarten age. He also said he'd been corresponding with another physician, who is more familiar and experienced with the abnormalities(no thumbs) and this surgery, and he recommended that we consider going ahead with the surgeries also. The physician he had been speaking with is in Boston and has more experience with these type of abnormalities and surgeries that try to remedy them. The surgery is basically where Selah's index finger is rotated over slightly and shortened and then after they work their magic and with therapy, this finger is supposed to start functioning like a thumb. This will hopefully help with her fine motor skills that are difficult and really impossible for her...pinch and grasping, buttoning, zippers, scissors, and so on.  So, we hadn't even thought about pursuing this surgery anytime soon and we definitely hadn't considered going so far away to pursue it but it had suddenly been brought unexpectedly.
That said...I began to speak with the Boston doctor office to find out about consults and all that good stuff and we made an appointment and drive up to meet the doctor in July. He said that he definitely recommended going forward with these surgeries(one hand at a time, not at the same time) and having them "completed" by kindergarten age. So, we left our appointment with him with a good first impression and actually considering moving forward with the surgeries. At this same time, I'm calling and leaving messages, which are not returned, for the Orlando doctor(about his recommendations for her jaw surgeries).
So, as that one door closed unexpectedly and surprisingly, another one opened and very smoothly and fairly quickly fell into place. And, here we Boston...
Her left hand surgery is set for tomorrow and we will have to see how it goes from there. We don't know what to expect or anything really. So, we're trying to take it step by step. If all goes well then we will plan to have her right hand surgery here in the spring. We also met with part of the team here that is going to look at her previous images(done at the Orlando hospital) and see what they recommend about her jaw and the timeline on those surgeries.  They are going to step into her surgery tomorrow while she's under sedation and look around her jaw, mouth, etc and get a feel for what all she's got going on.
Well...hope that this has made a little's a lot to try to pack in and make sense of. I'd like to include a lot more but it might become a novel, ha. I'll try to include some of that on the next post.
Anyway, I sure hope do appreciate the readers that have patiently stuck with me...I fully intended to post much much more often than I do...sorry, but thank you. Thank you for the continued prayers and support too! I will be back with a surgical update...:)
Much love and appreciation...thank you!!