photo Amazon_zpsli3iz9z7.png
Do you shop at or know someone who does? Click on the link below, or any Amazon link in this blog, to help us earn Amazon Credit in order to buy therapy equipment! Anything you order off Amazon counts! Please bookmark Madi, Ramya and Deena's link and pass it on... every order helps!

Tuesday, January 11, 2011

A big day tomorrow

Tomorrow Madi has a urodynamics test and renal ultrasound scheduled (or maybe a VCUG, not a renal ultrasound; for some reason I just cannot remember!).  These are never fun tests because they require Madi to lay still for quite some time and they can be a bit uncomfortable, even with her reduced sensation.  Madi usually starts to cry before the procedure ever even begins.  Just looking at the tables she has to lay on brings tears.  I always bring snacks, toys, and books to try to distract her, but when your life is filled with appointments and those appointments are often not fun, you know what the real reason behind those distractions are.  You learn it pretty early on, sadly.  One of the hardest things about being a mom is knowing that those tests must endured, but wanting so badly not to have to see your child go through them.  On the other hand, I am so thankful that we have these tests.  It actually wasn't until more recently that I realized how serious urinary problems can be for kiddos and adults with spina bifida.  Madi, thankfully, is followed very closely and her urinary issues are under close scrutiny.  Urinary problems can be very, very serious, though.  Here is a bit of information on the topic:

After meningitis and hydrocephalus, renal failure is an important cause of chronic ill health or death. Early and accurate assessment of urinary tract function will, I hope, prevent later and intractable renal disease, which causes a high rate of morbidity and mortality. This problem must be considered almost as urgent as the associated neurological and orthopaedic problems of spina bifida.


Prognosis varies by the level of cord involvement and the number and severity of associated anomalies. Prognosis is worse for children with higher cord levels (eg, thoracic) or who have kyphosis, hydrocephalus, early hydronephrosis, and associated congenital anomalies. With proper care, however, most children do well. Loss of renal function and ventricular shunt complications are the usual causes of death in older children.

In light of that information, it almost feels silly to get frustrated and complain.  We have so much to be thankful for.  Madi is lucky enough to be born in a time where she can get the help she needs.  As much as I hate these appointments and as much as I hate having to cath Madi and what that means for her, it also means something amazing; Madi is here on earth with us and can live a long, healthy, and happy life.  These tests help her thrive and give her the chance at life that she deserves.  So, while I am not looking forward to tomorrow, I am looking forward, and I am so thankful these tests give me the chance to do so.


Meilani said...

I have loved catching up on how Madi's doing. The video footage of her in the mobile stander is precious!!

I honestly LOVE this post. You have really helped me this week. You know that I am trying to find the grateful perspective in every day, but gratitude for urodynamics testing??? We go in this week for the same thing. I would never have thought to be grateful for it. :) Hopefully all goes well for both of our girls!

Leah said...

Honestly the urodynamics test does not take ages. I usually read a book or something on my phone whilst waiting for DS to finish. The surgeries and tests are hard but necessary. Whenever we go to the hospital for a procedure or a appointment with a specialist I usually bring some books and toys with me. And food and drink just in case.

We had his planned foot procedure done right before Christmas. I remember the back closure operation. That was the first of many operations my son would probably have done on his body. We are likely looking at yet another procedure on his spinal cord (tethered cord alert). Hopefully I’ll be filled in on the results of the urodynamics soon at the next appointment. The question of whether or not to do the surgery is based on the results. Sometimes I hate Spina Bifida. I know of other kiddos who have had surgery for their breathing issues after tests concluded that it was necessary.