We are very happily settling into our little apartment here. It is so nice to unpack and relax! We had a very relaxed Father's Day. I cooked breakfast (which was really exciting because it's been at least 2 weeks since I've been able to do that). We found a really beautiful catholic church here and got to go to mass together. Both kids took really long, peaceful naps and then we enjoyed the pool in our apartment complex. It is really starting to hit us that very shortly Peter will be going to stay with my parents for a while. Of course we know that this is the best thing for all of us, we are so lucky that our parents can help us as much as they are, but I've been crying about it all day. Every time I think about it I just get all emotional. Mike has started to jokingly refer to our separation from Peter as his "mini-deployment", he's going on a training mission. At first I hated the term but now it's growing on me. As promised here are a few pictures of our new digs, Peter is showcasing the apartment as well as his new skills. He has finally started crawling and has now progressed to some type of modified crawl/walking thing. He starts on all fours but then straightens his legs and walks on his feet while moving his hands forward. It's adorable! He's also pulling up on things and standing! The Kitchen The Porch Yes that's my son, in a suitcase. I got a little over excited during our pre-move garage sale that I sold the pack-and-play. Peter seems to really enjoy his suitcase bed. Boys are dirty. How is it that he can get completely filthy in a matter of seconds!?!
Hope you like NC! I was wondering what the doctors said about Olivia being a good candidate for transplant... was it age or the fact that her MRI showed no damage? My daughter was diagnosed with Sanfilippo B at age 5 with some abnormalities on her MRI and we were told that transplant was not an option for us.
Laura--I hope you get this email, I can't figure out how to get in touch with you, if you want to email me directly my email is laurieleiva@msn.com. It is our understanding that Olivia's MRI did show some abnormalities that are common in other patients with MPS but there was not any significant damage. Olivia was diagnosed when she was almost 2 and 1/2 and we were told that if we did want to proceed with the transplant we would need to do so before August of this year (due to her age and they typical progression of the disease). I'm happy to give you some more specific information if you're interested. Did you speak with the doctors at Duke about transplant or was it somewhere else?
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.
The Porch 
Yes that's my son, in a suitcase. I got a little over excited during our pre-move garage sale that I sold the pack-and-play. Peter seems to really enjoy his suitcase bed. 
Boys are dirty. How is it that he can get completely filthy in a matter of seconds!?!
4 comments:
Hope you like NC! I was wondering what the doctors said about Olivia being a good candidate for transplant... was it age or the fact that her MRI showed no damage? My daughter was diagnosed with Sanfilippo B at age 5 with some abnormalities on her MRI and we were told that transplant was not an option for us.
I LOVE the suitcase bed!!! That is so funny and cute! I've heard of using a drawer but a suitcase is so much smarter!!
he is so adorable, laurie!
Laura--I hope you get this email, I can't figure out how to get in touch with you, if you want to email me directly my email is laurieleiva@msn.com. It is our understanding that Olivia's MRI did show some abnormalities that are common in other patients with MPS but there was not any significant damage. Olivia was diagnosed when she was almost 2 and 1/2 and we were told that if we did want to proceed with the transplant we would need to do so before August of this year (due to her age and they typical progression of the disease). I'm happy to give you some more specific information if you're interested. Did you speak with the doctors at Duke about transplant or was it somewhere else?
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