The Great Roller Coaster

Hi

I am the mom of a beautiful 16 yr old angel mito Dis Type I, also Cri-du chat.  SHe has in the past been treated very well in Boston at the CHildrens Hospital.  I love Dr Mark Korsonn. These days the roller coasters downslides are more frequent.  Her kyphosis ahs now depleted her lungs to 1/4 of her left lung, her liver is 5plus midline and she is continuosly in congestive heart failure, some hours are good and the rest I hold her love her and rock her, she says 20 words which are ususally these days Oh momma!! She weighs 46 lbs and is 42 inches long.  She has survivied this roller coaster for a long time , the coaster ride can become frustrating and at times feeling as though there isno where to turn to talk to have people understand.  My top floor of my house looks like a medical center I think I have every bit of equipment she needs.  We decided when she was born and at the age of three when  we found out what she would be goingt hrough ,if we couldn't do anything else she would have whatever she needs.  This of course with life on life terms at times feel like the bank is dry!! Hence the roller coaster ride effects everyone including the dogs!!  Thanks for allowing me to vent.  Hospice is involved and being a controlling mom, I want to know what next, but of course noone can tell me.. I have always been her advocate and I can see changes but she looks at me smiles and giggles and gives me a squish!!

thanks for the opportunity

Phyllis ..Georgia