Life with The Leivas: Tick Tock

Thursday, May 20, 2010

Tick Tock

6:00 am--Wake up and get going on the elliptical
8:00 am--Olivia wakes up, get her breakfast, get dressed and ready for the day
9:00 am--Speech Therapy, Peter wakes up but seems content in his crib so I let him play
10:00 am--Speech Therapy over, I get Peter up and feed him breakfast while I give Olivia meds and administer nebulizer treatment
11:00 am--Let kids play while I frantically try to organize FRG bank account info while faxing paperwork for respite care and cleaning up from breakfast
12:00 pm--Fix lunch and feed the kids
12:30 pm--Put Peter down for a nap, clean up lunch
1:00 pm--Physical Therapy with Olivia while Peter is napping
2:00 pm--Playdate/FRG Treasurer training
4:15 pm--Playdate over they leave
4:30 pm--Supposed to leave the house but get stuck on the phone, load the kids into the car while finishing phone call, leave in such a rush that I forget military id and bring house phone instead of cell phone
4:45 pm--Leave house for the 2nd time, this time with correct phone and identification
5:05 pm--Arrive late to pick up friend for meeting
5:20 pm--Don't know where meeting is at Ft. Bragg and get lost trying to follow directions that friend's husband gives her
5:30 pm--Officially late for meeting, still driving around Fr. Bragg lost, kids are both whining in the car, friend is *understandably* very upset to be late to meeting and begins crying, cannot get in touch with her husband, no cell service
5:50 pm--Arrive at meeting, get everyone unloaded and into the correct conference room (Peter is barefoot because he took off his shoes and socks in the car and I didn't have time to put them back on him because we're already late, I'm that mom with the barefoot kids)
5:55 pm--Meeting ends, last hour and a half has been a complete waste of time, Friend seems very upset
5:57 pm--Try to make friend feel better by introducing her to other people but by this point I introduce her using the WRONG name
6:05 pm--Terribly embarrassed, call Mike to inform him that he's leaving work now, regardless of how much else he has to finish, Mike has no sympathy for me as he told me I shouldn't have gone to said meeting in the first place
6:10 pm--Meet up with Mike and we go to dinner together, Peter and Olivia both LOVE Kentucky Grilled Chicken
7:00 pm--Bath time, meds, and bedtime for the kids
8:30 pm--Mike goes to bed and I fall asleep watching Iorn Chef America re-runs

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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.