Spina Bifida Clinic

During their first year, SB kids in the area typically have Spina Bifida Clinic every three months. On Tuesday we spent the majority of the day at our SB clinic meeting with different teams of specialists and doctors. The highlight of the morning was definitely our little butterfly showing off one of her new moves ("the tripod" - see pic 1) while smiling her toothless grin.

Alex had a kidney ultrasound done during clinic and it did show some reflux which I'll try to explain, but bear with me since I'm no urologist. Basically normal urine function consists of the kidneys creating urine, it flows through tubes called ureters and enters the bladder which acts like a holding tank until the muscles contract and the sphincter relaxes and urine flows out of the body. Reflux happens when the muscles & sphincter don't work together exactly as they should and urine flows back through the ureters into the kidneys. This is bad because bacteria can cause infections and repeated infections can cause scarring and/or disease of the kidneys. Good news is that after we cathed her the problem resolved so we should be able to avoid infection by continuing to cath her. I know cathing freaks a lot of parents out but it's really not that bad and it just becomes routine. We were those parents reading about SB before Alex was born and cathing seemed like such a big deal and something we dreaded for our baby. Although we hope that Alex will someday not need to be cathed, it often just comes with the territory and is almost to be expected with SB kids.

We met with a physical therapist and talked at length about Alex's physical development since she's so behind. She attributes this mostly to her being in the hospital so much and her low muscle tone. It's kind of a vicious cycle - Alex gets sick or has a surgery, meaning no PT or movement for days or weeks, comes home & starts to get back into a PT routine, then she gets sick again. 1 step forward, 2 steps back.

It's crazy - we never anticipated Alex being on oxygen for this long. In fact we thought it would only be for a few weeks, and we certainly didn't expect her chronic respiratory issues and so many hospitalizations. Soon after she was born our focus was really her basic physical development and mostly if she would ever walk. Now things are much more complicated, as you well know, and we're just taking things one day at a time. We're praying that her respiratory condition improves so we can get back to focusing on her milestones and physical abilities. The PT during SB clinic always gives us good ideas to try at home and different exercises to do. We also work with a great in-home physical therapist once a week who we just love and connects so well with Alex.

I have to share about "Aunt Janie" (in the 3rd pic) who is actually a Neurosurgery Nurse Practitioner that we see in clinic. Janie makes things happen for us. She was the driving force behind Alex having her decompression surgery and she's a big advocate for us. She takes time out of her schedule to visit us when Alex is in-patient and she's introduced us to other families raising SB kids. She loves what she does and it's always good to have a "Janie" on your team.

Overall, we've been doing pretty well the past few weeks and staying busy as always. We did have one scare this week and we were half way to Children's before deciding to turn around and go back home. We couldn't determine if Alex was having a shunt malfunction or just had really bad gas. I know this sounds bad but even the slightest change in eating or sleeping can make you worry about shunt problems - so much so that an average crying fit has us packing a hospital bag. Fortunately, it was a false alarm (gas, we think) so we just came back home & made dinner.

Anyway, we've been staying at home as much as possible, which is hard because we love summer time bbq's and social gatherings, but it's for the best. The last thing we need is for her to catch another bug, sending us back to the hospital

Sorry for the novel, but there's just been a lot going on that we felt like sharing. We send our love to everyone and keep praying that Alex stays hospital free :)