Lauren attended spina bifida clinic in Nashville today. Overall, we received a good report and some interesting tidbits...
She began the morning with an ultrasound on her reproductive organs...which we received results when we met with uro later that day. Remember when I mentioned that Lauren has 2 vaginas? Well, it appears she has a double reproductive system, which means she has two uteri (uterus)...
The doctor said that it's actually not that uncommon to have this anomaly. Right now, it's not causing any problems, so "don't touch it if it doesn't need to be fixed yet"... In a year or two when we find out more about her urinary issues, we will discuss future plans.
Overall, she is a hot mess inside, but nothing that can't be adapted or mended. Honestly, I'm not too worried about it now. We have a really good idea of what's going on and are keeping an eye on things. The doctor said if her kidneys are growing correctly and bladder is doing it's job, then we're in good shape for now. The next time we see uro we will get a renal (kidney) ultrasound.
Next up was nutrition. Lauren has been vomiting her milk, typically the last one of the day about 5-6 times per week for past 6 months. She also has a very strong gag reflex, which has been stopping her from moving on to snacks like the puffs and yogurt bites... Even cut up into small pieces she gets gagged up and usually will throw up. So, it's been a bit frustrating, but from reading around it seems pretty typical for children with Chiari II to have sensitive gag reflexes... the nutritionist just really wants to make sure that Lauren gains the adequate amount of weight and receives the proper nutrition. So, she will be referred to someone to perform a feeding evaluation. She can then receive a type of oral therapy to help her with her feeding. This pleases me and calms my mind more than you know.
Last was a visit with her neuro surgeon. It has been a "quiet" 6 months neuro wise for Lauren, so we are very pleased with her progress. I remember a time when I prayed for this type of serenity with her shunt and thought I would never see a day like these. We are very blessed that her shunt has been working so well. We talked a little about other things, including her eyes and her sacrum.
Lauren's left eye wanders A LOT. Typically to the inside. I wasn't sure if this was caused by hydrocephalus or more a muscle thing. It's not the hydro, so I will get a referral from my pediatrician to the pediatric eye team at Vandy. I'm also relieved that we can get on top of this and try and make progress before it gets too bad...
The sacrum are the last 5 vertebrate in the spine. As we grow, they begin to fuse together into a triangle shaped bone between our pelvis bones. When Lauren was being created, a large part of her sacrum wasn't made. Which, means that she is missing most of this bone. When I did a little research online I found that when this happens its not uncommon for the child to have an imperforate anus... Ahaa!
Anyway, for the time being it's not an issue. When she gets older and larger, and begins to bear more weight onto her lower half, we may have some obstacles since her pelvis doesn't have the support of her sacrum. This means that if she becomes mobile with crutches, walker, braces... she may be even more limited and will have to rely more heavily on a wheelchair. Which actually doesn't really bother me. We expected from diagnosis that this would be her life and that's a part of who she is and we love EVERY part of her.
We did not visit ortho as a usual sb clinic goes because she will see him in two weeks to check out her feet and possibly get her new AFOs.
Anyway, all went well. I got some very helpful information and felt at ease with things as they are. I trust that with intuition, prayers, and staying on top of things, all will fall into place.
Lauren was also a fabulous baby today!
Love to all:)
