Life with The Leivas: Day +72 and pictures to come

Saturday, October 3, 2009

Day +72 and pictures to come

I love the weekends! So far we've been so lucky and Mike has been able to come visit every weekend. I know it's stressful to him to have to rearrange his schedule so that he has weekends free but it makes a world of difference. It's so nice to have someone else to unload the dishwasher or wash the syringes that we use for Olivia's oral meds. It means I can take a shower in peace without Olivia's "assistance". It means I'm able to make a leisurely trip to the grocery store. On Friday Mike was able to leave work a little early so I was able to run out and get Olivia some long-sleeve shirts. When I packed her clothes to come here I remember looking at her winter clothes and I carefully decided not to pack them. North Carolina isn't as cold as Washington and I remember telling myself that we'd be settled at Ft. Bragg before she would need them. Obviously I was wrong. I think we're getting close but we're not there yet. It's been a little chilly lately and Olivia only has summer clothes. I was able to find the cutest little navy blue coat at Old Navy for Olivia for only $8.50. I also got her a couple long sleeve shirts and some pants and I'm hoping that will take us through until we're able to move to Ft. Bragg and be reunited with all of our clothing.

Olivia is still going to clinic on Mondays, Wednesdays, and Fridays. They keep talking about changing that to just twice a week but now that Olivia has her port they have to do blood draws in the clinic. Since we are already in the clinic the consensus is that they might as well see us. Friday's appointment was seriously one of the fastest ever! We got to the clinic at 9am, the nurse accessed Olivia's port and drew the labs, then the nurse practitioner and nurse practitioner-in-training came in and checked Olivia out. They said that she's doing great! Olivia stopped taking her Cell-Cept (an immune suppressant) this week and she seems to be responding really well.

Now I'm enjoying some time to myself while Mike took Olivia for a jog. I can't believe the apartment is so quiet! I'm finally dedicating some time to posting some of the pictures from the last several weeks!

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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.