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Saturday, September 20th, 2008
115 Bourbon Street
3359 West 115th Street Merrionette Park, Illinois
3:00 – 8:00 p.m.
$25 in advance, $30 at the door. Ticket includes live entertainment, food, beer, wine and soft drinks.
Cash Raffle, Basket Raffle and Silent Auction.
Donations for raffles and silent auctions
(i.e. gift cards and event tickets) can be mailed to:
Loving Lauren
P.O. Box 684
New Lenox, IL 60451
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UPDATES 12-09-2008
Thank you for visiting our site and welcome to our weekly update on Lauren.
Lauren has been busy since the Benefit in September a few months ago. She has gained 6 pounds since that time! The surgeon who helps us with her stomach was so concerned with Lauren’s low weight for her age at the end of our September visit that he wanted Lauren to be hospitalized for nutrition. She would most likely need nutrition delivered through an IV. The surgeon felt that we would need to plan for a 2 – 3 week hospital stay. We were very sad at the time about the whole situation. It seemed like no matter how much we tried, Lauren could not gain weight all summer. When we went to the hospital that day, we had planned on spinal MRIs that morning and would just get admitted after those were completed. The surgeon thought that we should get her g tube swapped out for a g-j tube that morning, just to give that one more try before we had to use the IV nutrition. We had tried this a little over a year before this time. Mike and I were very skeptical because it was a disaster the first time we tried it. She had to have it placed at least 4 times under interventional radiology in a short time when it kept coming out of place. If the j (jejunum) part moves back into the stomach, then she starts to reflux just like usual. Vomiting was the problem last time. Well, it turned out that this time, it worked. She progressed so well with her feedings that she ended up staying in the hospital for 5 days instead of several weeks. We were thrilled! She has had the same g-j tube for almost 3 months now. It needs to be replaced every 4-6 months, so she will need to have it swapped out periodically anyways. She is now almost 22 pounds and is very close to a good weight for her height. When we first started with the g-j tube, she needed to be fed 20 hours out of 24 hours per day. We are now down to 18 hours and will continue to decrease the daily time as we can get the necessary calories in less time. Lauren loves the freedom from the pump, so we try to make this “free” time during the day when she is the most active.
Lauren has continued to get urinary tract infections since the beginning of the summer. We still do not really understand if the cause is related to constipation or the cyst in her spine causing signaling problems or some other issue. It has gotten to the point where the urologist has asked us not to use any more antibiotics to treat this, since it appears that she is now resistant to the medications we have been using. If she is showing severe signs of an infection, then we will have no choice. So far, she seems to be doing well without the medicine. The risk would be an infection spreading to the kidneys, which we would want to avoid. Her kidneys and bladder looked good in recent ultrasounds and the results of her CMG (cystometrogram) / EMG (sphincter electromyogram) tests (to test for bladder pressure, activity and coordination) actually showed improvement over the same tests from a year prior. The urologist would like us to give Lauren several ounces of cranberry juice per day as well as use probiotics to get more “good” bacteria in her stomach. We are still working on getting that part in place. Lauren is not really voluntarily eating anymore, so yogurt is not an option for us and it is hard to fit in all of the cranberry juice that she would need, given the slow speed that she needs to be on for the jejunum feeds. Lauren has an upper endoscopy scheduled right before Christmas that may help shed some light on why she is generally refusing to eat now. She could just be full all of the time. Her keloid will also need to be excised (cut out) in the near future as it continues to grow around her g-j tube.
Lauren has her TLSO (Thoracic Lumbar Sacral Orthotic) for her back now. This is a hard shell brace that gives her more support when sitting and standing. The curvature of Lauren’s spine due to scoliosis and kyphosis is still a major concern to the therapist’s that work with Lauren. The brace was customized to accommodate Lauren’s g-j tube and has a little extra space for the shunt in her back, so it would not put to much pressure on it. It is a perfect fit. She is wearing the brace for 15 minutes each day, generally during her therapy sessions. She is still using the walker at home and at physical therapy. Her feet were showing signs of spinal pressure very recently. It was hard to get her right foot in her shoe. We are just using shoe inserts for now, but we might need something that surrounds her entire foot. She can actually stand all by herself for a few seconds, but this scares her a lot. She does not want to try to walk without holding on to something, even though the physical therapist believes that she can do this with the help of the brace. Her fear is the main thing holding her back now. We just need to keep slowly working on it to build up her confidence.
Lauren had more spinal MRIs last week (December 1st) to see if she would need additional spinal surgery to help drain her cyst. Based on the results of the MRIs, Dr. Tomita wanted to add another piece to Lauren’s CP (cystoperitoneal) shunt in her back to help drain the fluid from the cyst in her spinal cord. It is technically called a spinal stent and forms a ‘y’ shape when connected to the existing shunt. The spinal pressure was so great that her spinal cord appeared the wrong color in the MRI images and it was pushing out when Dr. Tomita went in to add the stent. It was a good thing that we could get this surgery done so quickly. The downside is that Lauren is in a lot of pain now. Dr. Tomita said she would be in more pain after this surgery compared to others because she has more muscle in her back. It is a good problem to have. The shunt used to stick out a lot when she was so thin and now it doesn’t. She has not tried to sit up or move from a laying down position since the surgery last Friday (December 5th). We brought her home Sunday afternoon, since we could continue to give her the Tylenol and Motrin at home like we were in the hospital and her incision was healing nicely. She is much more comfortable at home. We just hope that she feels well enough to move around again soon.
In the meantime, Lauren is still talking a lot and is so excited to see her sister get home from school. We keep a hectic daily pace with her doctor’s appointments and therapies, but it is worth every minute to see her progress in so many areas. She will be graduating from the State’s program, Early Intervention, when she turns 3 at the end of February. We have had one meeting with the school district to see what programs would be available to her come March. She does not exactly fall into one of them, so the assessments by the school’s therapists and meetings in February will be very important. We are not sure if Lauren will be in a good medical position at that time. It would be great for Lauren to go to preschool because she is mentally ready for that. She is still a little afraid of children her age though. Finding the balance is the hard part. She will still continue to see therapists privately in addition to what the school would provide.
One last thing that I wanted to mention was related to genetics. We get this question a lot and we understand the curiosity because we share it. Although all of her doctor’s believe she has some kind of syndrome, we are not any closer to figuring that out. We saw the geneticist in October and we will continue to see her once a year. We continue to rule out some syndromes and find others that could fit. As the genetic testing that is available expands, we may find an answer. The only information that we have is that she has some kind of mutated gene. We do not know which gene that it is, so we are not at a point to test Mike, myself or Katelyn yet. Lauren’s chromosome testing did not show anything significant. Lauren continues to make huge strides and we are going to keep pushing forward without knowing everything. Even if we did find a syndrome, she would not likely fit everything about it and she might have other issues that are typically not part of it. It may not be all that helpful.
From this point on, I will continue to add updates once a month. We thank you for your continued prayers and support of Lauren
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