UPDATES 4-09-2008

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

Lauren was very happy last week and seemed to have some of her best therapy sessions ever. She really wants to stand up, but is not too happy when we put on her AFO's (ankle-foot orthotics) that cover the bottoms of her feet and extend up the back of her leg to her knees. She needs to wear the AFO's to protect her ankles from fractures and to give her some stability when standing and walking. The physical therapist supports her knees and helps her put one leg in front of the other now. This is very scary to Lauren, so she cries a lot during this part of the session. We know that we need to do this, but it still is tough on us to push her when she is so upset. Lauren's crying usually leads to reflux, so we also need to be ready for a major spit up at the same time. In the future, Lauren can wear orthotics that just go up to the ankle and this will be easier for her to walk in.

We are still working to coordinate Lauren's upcoming surgeries in April and May. The pediatric surgeon, Dr. Barsness, will remove the scar tissue around Lauren's g tube. Dr. Barsness is also planning to remove internal scar tissue in Lauren's abdomen using laparascopic surgery. On the same day, the ENT (Dr. Young) will put in new ear tubes and do a frenulectomy. Her original ear tubes have been out for several months now. We are getting new ear tubes to prevent Lauren from having more speech delays and because she did not have 100% hearing based on the ABR test she had in 2006. Once Lauren has healed from the stomach surgeries, Dr. Tomita will put in a second shunt to drain the spinal cyst that she has had since birth. This should help prevent nerve damage. He is planning to put in the LP (lumbar-peritoneal) shunt in around mid-May. All of these surgeries will be at Children's Memorial downtown. We will include the confirmed surgery dates in the weekly update.

We wanted to let all of you know that we love having visitors come to the hospital after Lauren's surgeries. We know that this is not very convenient for most people, but always know that you are welcome to see her. The visitor hours are from 10am-8:30pm. Lauren points her finger towards the windows and says "outside" most of the time these days, so her upcoming surgeries may prove to be the toughest inpatient stays yet.

Lauren is so blessed to have all of the wonderful people in our lives that are pulling for her and have done so much for her and us. Have a great week!