Counting our blessings...

TGIF soon! The days pass quickly but the weeks have passed slowly. I have several blessings I want to highlight as we have begun this diagnosis journey. First off, I was approved for 'sick leave pool' which will postpone the need for me to go on FMLA. There are people I will never meet who have donated excess 'sick' leave, and I doubt they have any idea of the value it holds in our life right now!

Second, I have spent endless hours on the computer researching and learning about many related disorders that Katarina has exhibited symptoms of in an effort to assist the doctors in a differential diagnosis. Because she has a pre-lim diagnosis of Hirschsprung disease, I explored some of the related conditions to HD. Well, lo and behold, one of those conditions is a type of Dwarfism (Cartilage hair hypoplasia) CHH for short. Kat has several characteristics and dwarfism just might explain why she has always been SO SMALL...she very possibly might be a 'little person'. I can't help but smile when I type it out b/c she has always been my little person;-)

OK...focus! So, as I was reading about little persons last night, I looked further at the medical resources and TCH came up as a skeletal dysplasia clinic. I read further and found out their skeletal/genetic clinic meets the second friday of each month. I quickly glanced at the calendar and realized that this friday was the 2nd friday of February. I frantically threw together an email and contacted the coordinator. I wasn't expecting to be told anything other than there would be a 4-6month wait. BUT, this morning I received a reply and the coordinator said they had a 9:00 am CANCELLATION THIS FRIDAY!!!! I was doing back flips!

So tomorrow is a big day! We have the skeletal evaluation, then the gastic surgery evaluation and a pediatrician appt. to help us manage all the speciality referrals while we are in Houston. As you can tell, my newest title is 'case manager'. I spent all day Tuesday and Wednesday sending faxing and making calls to request medical records and organize a medical timeline.

The list of blessings goes on: great support by many friends and family, waking up to the ocean while we count down the days until we have a surgery plan, a variety of special gifts to ease our stress, and the BIG small favors that many have provided!

I will be back late tomorrow. I need some sleep to carry us through tomorrow.

Hugs and love,
Nicole