UPDATES 6-17-2008

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

This is my first update in 2 weeks, I am sorry to say. Summer scheduling has made us more busy than usual around here. Lauren continues to work on her standing skills. She likes to climb up on her small chairs and then she pulls up to stand while leaning on her hands. This is a daring move for her. She has really gotten much better at balancing herself while standing and can get down on her own easier than before. In fact, today she actually took her first step forward voluntarily while her physical therapist was spotting her, ready to catch her if she started to fall. To see her smiling during physical therapy was so great. She tends to cry and complain a lot during that therapy because it is so hard for her. She likes to hold on to the ice cream truck toy that Katelyn used to love pushing around when she was first learning to walk.

The big news since my last upate was that I met with Dr. Tomita to talk about the results of the spinal MRIs in early June. Dr. Tomita showed me the images to explain the changes between the last round and the current round. The hydromyelia pool of fluid in the spinal cord has gotten larger (bad news), but the spinal cord width has gotten larger as well, so that you can actually see it in the image (good news). In the past her spinal cord was "paper thin" in one area. He was able to test the CP (cystoperitoneal) shunt pressure and it was still working at the pressure he had set it at during surgery, so that was good. However, Dr. Tomita was hoping the results would be more clear and we could start getting some answers. This was not the case. The fluid increase could be due to a rebound effect and will hopefully decrease again over time, but only time will tell. He felt that we should wait another 6 weeks to get more MRIs to see if anything changes. The MRIs are scheduled for Monday, July 7th.

Lauren also had a hearing test and this was difficult because she does not want to cooperate. I think that it would be hard to test any 2 year old this way. You go in a sound-proof room and the audiologist will play different voices and sounds to the right and left. When she looks to the correct side, a toy lights up. She looked to the voices on the right-hand side, but not to the left as much. She did not look to the tones or other non-voice sounds. She ended up failing on one side and passing the other. We need to re-assess this and it would be so much easier if she could tell us what she is hearing because we suspect that she was blocking out the tones and sounds. We had a post op follow up with the ENT who placed her ear tubes in April after the hearing test and she felt that at Lauren's age, she would most likely ignore anything but people's voices, since that is what is interesting to children her age. As long as we feel that she is turning to sounds at home and are not concerned, then she does not want us to worry about the results of the hearing test. Lauren does have a hearing test every 6 months because she has risk of hearing loss based on her medical history.

Next week, Lauren will get another steroid injection around her g tube. As always, we thank you for supporting Lauren.