Updates

I just realized that my most recent blog post was a while ago when we were waiting to see if Mira was going to have emergency surgery. Thank God, she did not have surgery. The issues resolved after we got her bowel movements under control. She now takes miralax once a day in one of her bottles. This keeps her regular, keeps her internal pressure down, and keeps her shunt working properly. Seriously, though, who knew constipation could be so horrible? And she wasn't even extremely constipated. It just turns out that with her, if she doesn't have a bowel movement at least once a day, her shunt gets backed up, which causes the ventricles in her brain to swell. At least we know what the cause was, and we know how to avoid this problem in the future!

When we were in the hospital, though they decided to do some routine tests to make sure everything else was going smoothly. One of the tests they did was an ultrasound of her kidneys, ureters, and bladder. The test results revealed that her ureters, going into her kidneys, were dilated, which indicates the pressure in her bladder is still reaching dangerous levels, even with her being on the medicine that relaxes her bladder and being catheterized every 4-5 hours. With this information, and the weight she as put on, we have now changed her bladder care plan. So she was getting cathed every 4-5 hours while she was awake, and she was also receiving 0.2 mg's of oxybutynin three times a day. The schedule now is that she gets cathed every 3 hours while she is awake, and that she receives 0.5 mg's of oxybutynin three times a day. This new schedule ensures that the pressure in her bladder is staying low, while also trying to train her bladder to function normally. 

OH! We also only have to wear her hip abductor on her at night now! No more half of every day, and all night long, just at night while she sleeps! Her hip is in the socket now! It's still a tad shallow, but nothing like it was! It should resolve itself as she grows, and we may never have to face hip surgery! Yay!

We are also getting ready to add occupational therapy to her weekly schedule. She already does physical therapy meetings once a week, and we do her physical therapy with her every day, but now that she's interacting with items, and playing with her hands, and becoming incredibly alert to her surroundings, occupational therapy wll benefit by really helping her develop those fine motor skills!

So those are the changes in her treatment plan, and the care that has altered in our every day lives, but she is just doing fantastic! She's so happy, healthy, and beautiful!