Life with The Leivas: A Very Special Dinner Guest

Wednesday, January 27, 2010

A Very Special Dinner Guest

We had a very special dinner guest tonight........Uncle David! Mike's brother David arrived home very early this morning straight from Afghanistan and we were thrilled to have him as our special dinner guest! Welcome home David! We're so glad you're back safe and sound. Olivia was pretty happy to see him. I really wish I had taken some pictures but I didn't even think about it until after the kids were in bed.

We had a busy day today. We left the house around 8am for clinic and didn't get home until after 4:30pm. It was a long day but things seemed to go well. It was really nice to have my mom there to help entertain the kids while we waited. Olivia's weight is all the way up to 15.6 KG so she's gained an entire KG since last week's visit. Her labs look okay. I did notice that when she was wearing her big green mask her respiratory rate increased quite a bit and it took her longer than usural to recover. This might be a sign that she's starting to get sick. I think almost everyone I know is sick right now, it's just that time of year. The plan is to give her some extra breathing treatments over the next few days and hope that helps. Most of Olivia's 6 month tests are scheduled for next week so we'll be spending a few extra days in Durham next week. After clinic we headed home with a quick stop at the grocery store for some supplies for our special dinner. My mom was able to run in while I waited with the kids. We got home just in time to put a yummy dinner together to welcome David home. The kids were exhausted from all of the excitement and the lack of naps today. I know we'll all sleep peacefully tonight!

1 comment:

Wendy Leiva said...: Thank you so much for welcoming David home! He really enjoyed his dinner with you all. I also had a great time yesterday catching up with you and your mom and those adorbale babies!!! Thanks for the rides and for having me over!! Love, Wendy; Friday, January 29, 2010 2:09:00 PM

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MPS/Sanfilippo Syndrome

In October, 2008 Olivia was disgnosed with MPS III or Sanfilippo Syndrome, type B. MPS stands for: Mucopolysaccharidoses. It is a genetic lysosomal storage disease (LSD) caused by the body's inability to produce specific enzymes. Normally, the body uses enzymes to break down and recycle materials in cells. In individuals with MPS and related diseases, the missing or insufficient enzyme prevents the proper recycling process, resulting in the storage of materials in virtually every cell of the body. As a result, cells do not perform properly and may cause progressive damage throughout the body, including the heart, bones, joints, respiratory system and central nervous system. While the disease may not be apparent at birth, signs and symptoms develop with age as more cells become damaged by the accumulation of cell materials.

Babies and young children with Sanfilippo Syndrome appear normal, but symptoms begin to appear with age as more and GAGs build up in the cells of the body. There are 3 stages to the disease. Stage 1 the child begins to lag behind peers and begins to display difficult behaviors. Stage 2 the child losing his/her language, becomes hyperactive, chews on everything, and has sleeping difficulties. Stage 3 the child slows down, becomes dependant for all mobility and loses the ability to chew/swallow. There is no treatment or cure for Sanfilippo. Life expectancy varies.