I haven't done a medical update/life update in awhile and as I sit here at 6:30 AM trying to get some peace and quiet before the kids wake up- I figure its as good a time as any!
Two of Kaseys biggest medical concerns this past year have been urological and orthopedic related.
3 years ago she had several urology procedures done at once- it was a big surgery that changed a lot of things for her/us. Unfortunately- there were a lot of issues following that surgery. A fistula that caused numerous hospital stays, some port revisions, etc. One part of the surgery involved a bladder sling- that has never worked like it should. Scans, cameras, etc. all showed it looking like it should work- but it just never has. We decided at the end of 2015 with her urologist to do something about it- she had surgery to fix the issue in February and since then- has been completely continent which is a big deal for her. Surgery didn't go quite as originally planned (they had to switch their plan when they were in there) but she healed well and has been extremely glad she did it.
I should add at this point that at 7.5 years old- we are trying to give her more input. She doesn't get final say on surgeries that impact her health - but she gets input.
Recently, we finally got to see/meet the orthopedic surgeon we've been waiting months to see. It was quite the ordeal. First appointment we were supposed to see him for- half the kids were sick (as was I) and we had to reschedule... the soonest open appointment? 2 months later. So- we finally got to see him last week and I left almost in tears. Compared to other appointments with various orthopedic surgeons - these were tears of happiness though.
When you have moved a few times, dealt with a few different hospitals/surgeons, etc. you learn that some surgeons will look beyond diagnosis and case files while others... do not. Our previous orthopedic surgeon refused to contemplate doing anything to help Kaseys muscle contractures because "Well, with her level there is no point. She's wheelchair bound." When she was younger, I had an orthopedic surgeon tell me that by having her attend physical therapy- I was torturing her because she should just "be a kid" and "at her level" it was pointless. (My feelings on these types of comments could create a whole other blog post- so I'll keep them at a minimum for now).
This orthopedic surgeon (we shall call him Dr. L.) came in and had obviously looked at her chart and file. He talked to Kasey, did a very brief eval of her legs and hips. He asked me a few questions and then said he wanted us to go to xray and do spine/hip/leg xrays and then he'd talk to us again. 5 minutes later, Kasey was in radiology.
Once he had seen the scans he came in with his nurse and did an extremely thorough exam. He checked the angles her legs were stuck at, her level of sensation, etc. Then he asked me what my hopes/goals for her were. Then we went over what the scans show, what we think can be accomplished without surgery and what would require surgery.
To make a long conversation somewhat shorter- the plan is: serial casting (which is when they do a special type of cast on a specific body part for a certain amount of time, then remove it, put a new one on,etc. until its to a certain angle), then once that no longer is having any effect on her knees- we will do new scans and decide surgically what we want to do. We already know that a heel cord lengthening is in the cards- which isn't a surprise to me because it was something recommended before we moved from TN to FL because her ankles turn due to the muscle in the back of her leg being too short. The knees and hips will be more complicated. Kasey has osteopenia which means her bones are easily broken and certain procedures won't do any good. Dr L. said we will deal with casting first and then go over options, pros and cons, etc.
The appointment ended with Kasey convincing him to take selfies with her and proclaiming that he was a "sweetie."
As a special needs parent dealing with specialists on a regular basis- it has always been important to me that I feel heard (and Kasey does as well) when trying to express concerns. In the past, when I've mentioned that prior to Kaseys 2nd tethered cord she was learning to walk- I would instantly get shut down. Instead of listening to what I continued to say- certain specialists would focus on that instead of hearing me say "its more important to us for her to be upright to where she can use a stander, than it is for her to ever walk again." I entered our appointment with Dr. L. planning on not saying a word about her previous experience with braces and learning to walk- because I didn't want to deal with that attitude again. However, he brought it up (he'd read it in medical records) and still listened to what I had to say. Our conversation ended with him making it clear that he considers us a "team" when dealing with Kaseys health care. He will present options, pros and cons , and his medical opinion but he wants me to feel comfortable with what we decide.
Essentially, he's a godsend and worth his weight in gold.
He was ready to start the casting that day- but we realized that it would probably be better to wait until baby #4 is no longer in utero. I'm to call their office when I'm ready to schedule an appointment to start with the casting and we'll go from there.
All of this- means a lot to me. No parent wants to put their kid through extra procedures, casting, etc. if they don't have to but getting Kasey upright in some form or fashion is so important for her. It's beneficial to her mental,emotional and physical health. Having a stander again will mean the world to her!
In other news- Kasey has been approved for her wish trip by a local wish granting organization. She of course chose a trip to Disney World! This fall/winter we will be spending a week in Orlando- 3 days at Disney Parks, 2 Days at Universal and a day at Sea World- and a day spent puttering around the "Give Kids the World" village. Expect to see lots of posts, updates, etc. about that as the time gets closer.
She's also excited because that same organization has local events as well- in June she will be attending an event where she gets to see some princesses, do lots of fun activities, and get spoiled rotten. That's all the details we are allowed until we show up on that day!
Yesterday they called to see if we wanted last minute tickets to go see Disney on Ice: Frozen. Of course, I said yes, we will move around our schedule to make it work. So today- myself, Kasey, Kora and Ms. Kelly (Kaseys ABA tech- more on ABA in another post) will be going! The shrieking in happiness and singing of Frozen songs started pretty much as soon as I told the girls the news.
So far- we're having a pretty awesome year if I do say so myself!