UPDATES 9-08-2008

Thank you for visiting our site and welcome to our weekly update on Lauren.

The last time that I did this update, I mentioned that Lauren had a urinary tract infection.  She has since had 2 more infections in a row for a total of 3 in the past month.  Within a few days of completing the 10-day course of antibiotics, she kept testing positive for another infection.  We have been able to get her tested and treated through our pediatrician, so we have avoided any hospital stays.  Since these infections started, she has had more trouble with her reflux and has had trouble sleeping at night.  Lauren is scheduled to have a renal ultrasound to check her kidneys and bladder.  She also will have CMG (cystometrogram) / EMG (sphincter electromyogram) tests to test for bladder pressure, activity and coordination.  These tests are all scheduled for tomorrow afternoon (9/08).  We will not get the results until we see the urologist on 9/22.  Until we can meet with the urologist, Lauren will be on a daily antibiotic to hopefully prevent more infections.  As I mentioned in the last update, the cyst in Lauren’s spine may be impairing the signaling from her brain to her bladder that can ultimately lead to urinary infections.  I also recently learned that constipation, which Lauren has been having a problem with lately, can lead to urinary tract infections as well.  We are giving her Benefiber and have changed her formula to one that includes fiber and probiotics based on our Nutritionist’s advice.

We are planning to move forward with getting Lauren a TLSO (Thoracic Lumbar Sacral Orthotic) for her back.  This will give her more support when sitting and standing.  The curvature of Lauren’s spine due to scoliosis and kyphosis is a major concern to the therapist’s that work with Lauren.  Kyphosis causes a lump on her back and makes it hard for Lauren to sit up straight.  After much deliberation between the orthopaedic surgeon and the physical therapist, we are planning to get 2 back braces.  She would wear a softer, more flexible brace during the day when she is moving around more and a harder brace during the night.  The orthotics will need to be customized to accommodate Lauren’s g tube.  The exciting development is that Lauren is voluntarily walking using her push-toys.  We have tried a walker at her physical therapy sessions and she does great getting around with it.  Once we have the back brace, the physical therapist can assess what orthotics she may need for her feet.  We use her current AFOs (ankle foot orthotics) for standing, but they are not as flexible for walking.

Lauren needs to get more spinal MRIs in October to see if she will still need additional spinal surgery to help drain her cyst.  She also will need to get her g tube site modified, since the keloid around it continues to grow.  The pediatric surgeon and the gastroenterologist talked and based on that discussion, they feel that the g-j tube is the best solution.  I mentioned this topic in the last update that this would mean that Lauren would be tethered to her feeding pump 20 hours a day.  The jejunum cannot handle too much formula at a time like she can receive through her g tube.  This will be very challenging to us given her high activity level and the fact that she is also trying to walk now.  She will not get the Nissen Fundoplication with the g-j tube surgery.  The gastroenterologist feels that this will not help in any way and the procedure could result in more harm than good.  Lauren’s weight has stayed in the same range and we are hoping that we can see more weight increases now that she is over her latest urinary tract infection. 

Lauren is really talking up a storm lately.  Now that Katelyn has started all-day Kindergarten, she does miss her sister during the day.  She often asks “where’s atein”, which is her translation for “where’s Katelyn”.  She smiles when she asks me now because I think she already knows the answer.  We watch Katelyn get on the bus every morning and the kids all seem to love getting high 5’s from Lauren before school.  Hannah and Barney are still favorites, but she seems more interested in putting in and taking out the DVD’s from the DVD player than watching them now.  She has really gotten that process down.  Lauren and I enjoy the less hectic pace during the day now that school has started.  We still have therapies and doctor’s appointments, but it is not as chaotic as the days were in the summertime.