Update on clinic day: It was as good as it was loooonnnnngggg. (Thank you to Nana and Grandpa Shaw for watching Nicholas so he could stay at home in his normal routine!!!!)
For anyone who doesn't know, Clinic is essentially an appt. where multiple different medical specialists are there to meet with patients on the same day. Its a benefit to patients obviously because it minimizes the sheer number of appointments but more importantly the medical specialists can also discuss each patient with each other and do some problem solving, discuss resources, etc.
Not everyone with SB goes to "clinic" per-say, there are pros and cons as with everything but we thought we'd give it a try and see what we thought. We started with Alex's kidney ultrasound which thankfully looks good. We were anxious about this since he has had kidney reflux before. He will have another scan in three months to keep an eye on things. We know that many children with SB have to be catheterized to help empty their bladder and protect their kidneys if their bodies are not doing the job adequately. In other words if the bladder gets too full and doesn't empty regularly, it can back wash (reflux) into the kidneys which is not good (can cause repeat infections, scar tissue and ultimately permenant kidney damage).
Many parents who have to learn how to cath have said cathing just becomes routine and yet the thought of this has always given me angst. I think partly because every time we have been in the hospital and Alex needed cathing, none of the nurses could do it and always needed one of the urologists to come (this is because he has hypospadius and is actually fused down there--this is the surgery he will need when he's bigger to correct). I'm thinking if a nurse can't do it, how the heck would I if/when the time comes? Anyway always too far ahead of myself.
The ultrasound did reveal that Alex's kidneys are fused together. I was alarmed by this but the urologist assures us this can happen during development sometimes and has no bearing on his current kidney function. He just has one very large kidney instead of two. I've since done a little research and learned this anomaly can be associated with increased incidence of kidney reflux , argh but again thats why he is being followed so closely.
The urologist then wanted to do another exam (cystogram) where he inserted a catheter to fill up Alex's bladder and watch on the monitor how it contracts and empties. There was a lot of information given to us yesterday so I'm not sure I processed it all but I think it can show how well his bladder empties completely on its own or if there is constant residual and/or possible reflux. He said the test is not perfect but he was happy with what he saw. Big sigh of relief!!!! He doesn't think Alex needs anything added or different to his routine (right now he is just on an antibiotic daily to prevent urinary tract infections due to his anatomy and history of reflux).
He did say that he doesn't think he can have the surgical correction of this until after he's a year old. He wants him to be much bigger overall in order to have the most potential for success. We are fine with this!
We also met with physical therapy who played and evaluated Alex. He gave his best and flirted shamelessly!!! We are asked by family and friends if Alex moves his legs. The simple answer is yes. The more complicated one is he has a little bit of movement, more with his left than his right and not terribly frequently with either. He seems to have some hip movement that helps him roll (you can actually see how hard he works for this and he makes us so proud at this). He can lift his left leg up and tense it and we've noticed a little bit of movement recently with his feet, though not consistently. He doesn't seem to have ability to bend his knees at all. Its hard to know as parents or even the professionals what this will all mean in the real world for Alex as he gets older but we are happy with any and all movement. We remain confident that no matter what, he'll be able to be independent even if that means he needs some sort of devices to do so. His fighting attitude even at this early age tells us that!!!!!!
Physical therapy was very happy with where Alex is right now, and was encouraging about the small movement he has started to make once in awhile with his feet and ankles. They think he is demonstrating muscle abilities in his quads and glutes which lead everyone to believe that with braces and lots of therapy, he might be able to walk in the house or maybe short distances. They explained its hard to tell anything for sure this early but they were reassuring that what our regular therapist is doing and the exercises we do at home daily were right on task. We are told with therapy, children can continue to get more movement, its unclear how much more or how long but we are thrilled with how well he's doing so it doesn't get much better than that!
We made sure we scheduled an appt with Ortho to discuss hip issues, leg length discrepancy since they were unable to be at this appt.
More than three hours later, Alex was simply exhausted. To my disappointment he is not a baby who is able to sleep cuddled up on me (unless he's not feeling well). He just prefers sleeping flat on his back and can't seem to get comfortable any other way. He did not sleep our whole time there and it was starting to show by this time. He rarely even sleeps in the car seat in the car although this is getting a little bit more common probably due to essential need with all of our appts and him missing naps. Anyway, on our way out someone realized that we had missed meeting with occupational therapy (we had no idea, we assumed everyone who had marched in and out of the room all afternoon was everyone, there were multiple medical students in addition to the therapists, doctors, etc) so after all that time we still did not meet with everyone we were supposed to. We'll have to make a call and see if we can talk or meet with him/her separately.
All in all, our first clinic appt was a success and we were thankful for such good news and that we have so many people watching out for him!!! Oh....and Alex did sleep in the car on the way home!!!
Here's a couple of our recent favorite photos:
We LOVE this stage. The boys are really starting to notice and pay attention to each other now. We are noticing that they are beginning to look for their brother in their crib or when playing, it is awesome!
Here's one where they are just sizing each other up.