UPDATES 4-22-2008

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

We have exciting news to share this week. Lauren actually took her first step. She was leaning onto the fireplace in a standing position when she took a step. Mike noticed it first and we could not believe it. It seems that as long as her feet are bare, she is willing to try to stand and walk. She cries throughout physical therapy when she is forced to wear her orthotics and shoes. Her ankles look so weak without the support though. We need to get her used to wearing shoes. That is going to be a big challenge.

Lauren has been having so much fun exploring outside, now that we are finally having good weather. "Outside" is one of the few words that Lauren says and she gets really frustrated if we don't let her go outside when she points to go out. She has been crawling over all kinds of different surfaces as well. With all of her sensory issues, I was shocked to see her crawling on grass, concrete and the driveway. I cannot wait to tell Lauren's occupational therapist about it. Lauren also goes up our front step, which is pretty high. She gets so far that she has already crawled to our neighbor's front porch.

The ear tubes and frenulectomy surgeries are still set for this Wednesday (4/23). We should be able to go home that afternoon. Dr. Chin is the general pediatric surgeon that will be assisting Dr. Tomita for her LP (lumbar-peritoneal) shunt surgery on Friday, May 9th. Dr. Chin had assisted Dr. Tomita with Lauren's original VA shunt placement last August. Dr. Chin is going to take the place of Dr. Barsness who was not able to do the surgery that day. He will clear a path for Dr. Tomita, so that we can hopefully avoid the past complications that we have had with her internal scar tissue. Lauren will most likely need to stay in the hospital for at least 3 days after these surgeries. The neurosurgery group will release Lauren when they feel we can manage her spinal pain at home. The spinal surgeries have been much harder recoveries for Lauren in the past. She may not sit up again for a few weeks after the surgery, but her strong will serves her very well during these recovery periods. She refuses to be kept down for long.

The only other news on the medical front is that we will be seeing a gastroenterologist that specializes in all of Lauren's problem areas (reflux, poor weight gain, feeding problems) on Monday next week. The question we have is what do we do next. Other GI's had hoped to avoid surgery related to Lauren's stomach because of all of her neurological challenges. However, no one thinks that she should still only weigh 15 pounds at her age and her reflux looks so painful. We also have to worry about long-term throat damage because she vomits an entire feeding at least once a day. This is an area where we hope to get more answers soon.

On a final note, I wanted to take the opportunity to thank everyone who came to the bowling event for Lauren last Saturday and to all of those who donated their time and energy to make the night a success. We also appreciate all of the contributions that have been made to Lauren along the way. We truly are blessed to have such wonderful family and friends and even people who do not really know Lauren directly, who just want to help any way you can. We really cannot put into words how much it all means to us. Sometimes, even we are speechless with gratitude :)! Lauren also had a lot of fun that night. The bowling alley was another new place for her to explore and I did not want to pick her up and ruin her enthusiasm, but she is just so low to the ground that it is not safe for her to crawl with large groups of people around.

Have a wonderful week!