Spinal Defects Clinic #2

We had our second Spinal Defects Clinic at Rady's Children's Hospital.  Our check in time was 11:45am and we left around 4pm.  When we arrived my Mom and I checked in and got ready for our afternoon adventure to begin.

The spinal clinic is amazing and horrible all at the same time.  The horrible first, we are at the hospital for approx 4 hours.  The amazing, we get to check in with all of Livie's doctors in the same visit.  Most of the time milestone check ups involve calls to 5/6 different offices to coordinate visits but our Children's Hospital is progressive with spinal injuries and about 5 years ago started this clinic to make things easier for parents of kids with spinal energies. As seemingly horrid as this day can be we are very thankful we have it!

First up Dr. Pring, our Orthopedic Surgeon.  She is our amazing Dr that helped with Olivia's clubbed feet and will be a part of her life as her legs and feet further develop.  Olivia LOVES Dr. Pring and always has.  Dr. Pring gets Olivia talking and laughing, which is a great way to start our long long long journey today.

• We are getting a new prescription for her leg braces. She has outgrown them and actually her leg bones are curving around them.  (Super scary but Dr says they will be just fine.  Phew!) Our new ones have to come all the way up the base of her knee to protect the shin and other bones.
• We also told her we saw ankle movement for the first time! (YAY!!)  After settling down from her excitement Dr. Pring gave us the ok to take her braces off throughout the day and let her feet get some time to work!  Awesome :D So they are off a few times during the day and all night too!
• At the 9 months mark she also told us Livie would get another set of X-rays for her hips to check on their progress. (When she was born the right one was slightly displaced but is seems to have corrected during the casting process.)
• Note: Not too excited about those x-rays as Livie did not really enjoy herself last time.  We'll see how this round goes.

Then in comes Dr. Pierce, Pediatric Rehab doctor.  She is extremely welcoming and has great energy so it is always a nice to see her.  (She also is one of 2 extremely active Drs in the Spina Bifida local community.  Awesome!)

• Dr. Pierce LOVED her progress and thinks she is really doing great in development!  WOO HOO!
• Since we are ok to start trying out pools she recommended getting pool shoes.  Since it does not look like Livie will have a lot of feeling in her feet we will need those to protect her feet.
• When Livie goes swimming she may scrape her feet on the bottom of the pool and not know because of the lack of sensation.  I really really want to find cute ones so that she will actually wear them as she gets older.  Any ideas in where to find this let me know please.
• Also found out there is a personality trait for many kids with Spina Bifida.  STUBBORNNESS!
• You need to ensure you keep SB kids on a regiment because if it is not something that is part of a routine many times they do not want to do it (and sometimes even refuse to do it).
• Plus she has Russell and I in her so between that stubbornness and the SB this kid is screwed ;)

Next we were visited by California Children's Services.  They helped us better understand all of the services available from the state of California. We are in a very good state when it comes to taking care of children.  We are so very thankful!

In next came Dr. Chang, Olivia's Urologist.  (He is the other of 2 Dr very engaged in the Spina Bifida local community!  Love him!) The week prior Livie got an ultrasound of her kidneys to check on reflux.  Great news, still low pressure so Dr. Change is thinking we do not need to worry about kidney failure.  YAY!!  On the other side of that, low pressure means bladder function may not be so great.  We will have to see how that progresses.  

• Dr. Change has ordered a DSMA test for her at the 1 year mark.  It will check the kidneys size, position and function to get the full picture of how they are working and developing.  
• This is a test where Livie has to stay on her stomach for 20 minutes - not looking forward to that either.  Tummy time usually only lasts, on a good day, 10/12 minutes or so.  GULP, that will be a long appt whenever it is scheduled.
• We are also going to get another VCUG about a month later.  This will check the function of the entire urinary system.  Olivia got one of these before she checked out of the hospital right after she was born and was a champ!
• More on VCUG here 

And finally we saw Dr. Melzer, the neurosurgeon that did surgery on her back and also inserted her shunt.  We were not scheduled to see him on Tuesday but he was in for some other patients so he stopped in to say hi.  He calls her the "Miracle Baby" and, whether he is just being nice or not, it always makes us smile because we feel the same :)  

• He is requesting a head CT and shunt series completed on Olivia to check on her shunt function.  
• More info on shunts here: Johns Hopkins website

So that is our Spinal Defects Clinic update!  A lot of information, huh?  We definitely understand!  From all of us in the Smith house to all of you, Thank You for joining us through our journey!

Be Happy.  Laugh.  Enjoy Chaos.