UPDATES 4-29-2008

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

Lauren continues to try standing by leaning on to anything she can in the house. She gets a very proud smile on her face when she straightens all of the way up. Her feet and ankles still look awkward, so sometimes it can be painful just to watch her. It does not seem to bother her in the least though. She really is flexible! Lauren is still very insistent on being outside of the house as much as possible. If we do not keep a close on her every move, she can easily cruise to a neighbor's house very quickly and because she is small, she can be hard to spot. She can really motor around now. I feel like I have to move fast to outpace her crawling speed.

She was able to have the ear tubes and frenulectomy surgeries last Wednesday (4/23). It was so nice having outpatient surgery for a change, so we could go home the same day. Grandma Nardulli was there to help me comfort Lauren prior to and after the surgery, while Grandma Davis was charged with watching Katelyn. Honestly, I am not sure which task was more challenging! Lauren was very anxioius when we brought her back to the pre-surgery area. Until that point, she was in a great mood. She seemed to know exactly where the exit was based on her wild gesturing towards it whenever she could. On a funny (or scary) note, the anesthesiologist came into the room and said "so we are doing a tonsillectomy today" with all seriousness. This was well after we had completed the mound of pre-surgical sheets and signed off on the actual surgeries planned for the day. Luckily, they performed the correct surgeries!

The upcoming spinal surgery information has not changed. 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 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. We are hoping that because she is a little bigger and much stronger than in the past, that this will help her recover faster this time.

I brought Lauren to see a gastroenterologist today. Dr. Nelson is new to us, so most of the visit involved reviewing Lauren's "complicated" medical history. They really need to add more lines to the surgery section on these forms. I took for granted how easy things were with Katelyn because it only takes me a few minutes to fill out her medical history. Dr. Nelson told me that Lauren's symptoms (severe reflux and poor weight gain) are very typical to other children who have neurological issues like hydrocephalus and chiari malformation. She approved of the formula that we are giving to Lauren (Peptamen Jr.) and let me tell you, this is a huge win. The biggest battles we have faced in the past have involved the type of formula and the calorie concentration we should be using for Lauren. There are more differing opinions on this than you can possibly imagine. I also just realized that Lauren's formula runs at roughly $40 per day, totals only 1,000 calories and she doesn't even enjoy it :). I am going to attempt to get an "upper GI with small bowel follow-through" scheduled for Lauren prior to the spinal surgery, to see if there are any obstructions. In the past, we have only had upper GI's done and this did not give us much helpful information. The results of this procedure would be helpful for the pediatric surgeon to know for the May 9th surgery. Dr. Nelson would also like to do an upper endoscopy on Lauren at some point, but it is not critical right now. Lauren will be getting an increased dosage of Prevacid now and we are hoping that this will help with her reflux a little bit.

Thank you for your continued support of Lauren.