Day #51 - Primary Children's Medical Center

Relaxing with her dad, waiting for doctors to arrive. She got pretty bored and antsy. At one point we were talking to a doctor and she started writing all over herself with a marker.

Lily had Spina Bifida Clinic today along with a bladder test at Primary Children's Medical Center. Clinic days are always long, especially if you have testing to do. We were there from 7:30am until about noon. The best thing about clinic is that all of the specialists come to us (and can talk to each other!). All of the families arrive around the same time and are ushered into their own room along a long hall. Then specialists including: physical therapy, occupational therapy, nutritionist, orthopedics, neurology, genetics counseling and urology all take their turns visiting and checking up on each patient. I am so grateful for this clinic! It is one of the reasons we chose to move here and we have felt really good about that choice. Lily receives very good care there.

This clinic, Lily's bladder tests showed that her bladder is under some stress. The shape is really bumpy and that means that it has been contracting a lot. This could raise the pressures in the bladder and put the kidneys in danger. So as a precaution we will be giving her ditropan twice daily (just like Eryn). And she will also need an antibiotic daily to keep her from getting too many bladder infections. She had quite a few last year. Eryn is also on a daily antibiotic. It is too weird how many things they have had alike. :) Beyond that, Lily is going to have to take a sleep study in February. We have noticed that she sometimes stops breathing for like 5 seconds when she is sleeping. Hopefully it is nothing. I guess we will just see.

In general, Lily's health has been really good. I read about lots of other children with Spina Bifida (and through our support group I know of lots of others) who have had a lot of serious complications early-on, including major surgeries and long recoveries. Joel and I know that we can count our blessings in this respect today, knowing that tomorrow anything can happen.