We had another full day of appointments today - started at 8:30am and we left the clinic at around 3pm. That's a LONG day for anyone, but especially for our sweet girl. I just have to say... she really has tolerated all of these appointments well and overall, behaved wonderfully.
But, let me back up a few hours... remember yesterday's post about the lesson learned. Well, that enema must have released the dam of stool that was in Maia's colon because all I can say is "WOW!" Today, I was able to see the abdominal x-ray that showed how full of stool Maia was. All the doctors have been quite impressed with the films - and not in a good way! It's amazing that her eyes weren't brown. But in the last 24 hours, I would guess that about half of that stool has left the premises. That girl can poop! Ok... 'nuff said!
We started out the morning meeting with the nurse coordinator of the spina bifida clinic and one of the social workers. Really nothing to mention with those appointments. Maia had blood work scheduled for today and I was a little apprehensive about that given how poor her veins are. We were given the option to have a numbing cream applied to her arms prior to the blood draw (for an extra fee of course). It was a good choice, although it may have just been that the lab techs only work with pediatric patients. They accessed her vein the first try and Maia barely flinched. What a blessing that was. We can take her back to that lab for all of her future labs and I'm thinking it is worth the inconvenient location. Our last morning appointment was with a physical therapist. She did some assessments, noting that the muscles along the backs of Maia's legs are weaker than on the front of her legs. She also mentioned a possible need for some orthotics to help with Maia's flat feet.
Went to our favorite restaurant for lunch - Famous Dave's. Thanks mom and dad for the gift card! Our bill was a whopping 50 cents, plus tip after using our coupon and the gift card. Can't beat that!
Our first appointment this afternoon was with the urologist. He reviewed Maia's urinary x-ray, abdominal ultrasound, and urodynamic studies. The good news is that Maia's kidneys and bladder are normal size and show no evidence of any damage. Praise God for that! The urinary flow studies show low tone in her bladder which is not a surprise. The urinary x-ray shows that when her bladder fills to a certain point, urine begins to flow backward from her bladder into her kidneys. This causes chronic bladder/kidney infections and can result in impaired kidney function and eventually kidney failure. The low tone in her bladder is a result of the spinal cord damage from her SB. So... what does it mean and what do we do? Well, Maia has a UTI right now and will start an antibiotic for that. After 10 days of treatment, she will switch to a preventive antibiotic which she will take for 1 year. A medication to improve her bladder tone has been prescribed as well. We will also begin intermittent catheterization 4X/day. These interventions will help with both the reflux and UTIs. The urologist is optimistic that the reflux will resolve on it's own, he says this happens in 60% of cases. The tests will be repeated in one year. If there is no improvement, Maia may need injections into her bladder to help improve the tone and/or surgery. Will you join us in praying for complete resolution of the urinary reflux?
Our final appointment today was with the SB physician who will coordinate Maia's SB care. God led us to the perfect doctor. She is a young woman who adopted a little girl with cerebral palsy from Russia about 18 months ago. Her daughter is just a few months older than Maia. So, she really "gets" it! She reviewed the physical therapist's recommendations and said that she would like to give Maia a few months of exercise, good nutrition, play, etc. before considering any type of orthotics or further interventions. The doctor believes that this combined with testing and early childhood interventions that Maia will receive through the school district may be enough to overcome any current deficits. We will see her back in 3 months and go from there.
Thank you for your ongoing prayers! On Thursday, Maia will have her hearing tested just to make sure there isn't any impairment that is affecting her speech development. We don't anticipate anything to show up because she hears very well when she wants to - lol! Friday is the swallow study. We haven't noticed her coughing/choking with liquids as much as she did in the beginning - I'm guessing this is because she is starting to understand that no one is going to take her food or drink away from her and she doesn't have to rush so much.
Bedtime tonight was quieter, I kept our regular routine with lots of hugs, kisses, affirmations before I left and there were no tears. Of course, she might have been pooped out - literally - lol!!