I will start with the many blessings we've experienced over the past few days. I'm grateful that I didn't get a ticket for a VERY expired inspection sticker and speeding the night I arrived from Lubbock. I received a beautiful bouquet of red roses for Valentines from my two men!! It was bitter-sweet though as it was our first Valentines apart :-( We rebounded on Wednesday as the sun came out and the wind was completely calm on the beach. We embraced the sound of the ocean and the seagulls...truly peaceful!
I'm thankful to the jogger who took time out to take our photo.
On Thursday, we had the pleasure of meeting two other families with children with Down syndrome. One was a teen girl who had just had a liver transplant and the other mom picked Kat out in the Subway line and showed me a picture of her lil girl on her cell phone. It's an interesting journey to be a part of a club we didn't sign up for but have been so touched by! And I was able to teach via Skype for the past two weeks! Having some normalcy in less than 'normal' circumstances is very refreshing!!
On the medical front, we have made some progress and yet we still don't have a complete diagnostic picture. We are waiting for pathology to read the biopsy from Lubbock to determine whether Kat needs a secondary biopsy or if she has Hirschsprung at all. So, in the past two weeks, we have been referred to Pediatric surgery, genetics/skeletal dysplasia, pulmonology, endocrinology, and gastroenterology. What this really means is testing, testing and more testing. The most frustrating part of this process is the lack of swiftness in getting appts. Our endo appt is at the end of April and the Gastro appt is Mar 23rd...less than ideal when Kat's digestive system is not functioning;-(
Next week will involve an upper GI and a sweat test, and possibly a second biopsy under anesthesia. The sweat test will offer a quick result in an effort to rule out or begin to rule in Cystic Fibrosis. We hope to be clearer about the Hirschsprung disease one way or the other. In the mean time, Kat's body continues to fail to absorb anything she consumes, her appetite has diminished, and she has a fair amount of abdominal discomfort. Despite her body's challenges, she shares her precious smile and an occasional belly laugh when I play with her feet or balance a measuring cup on her head;-)
We continue to be amazed by the outpouring of support, love, gifts of thoughtfulness, prayers and messages.
I will return with an update mid-week! Katarina and I wish we were on the way back to Lubbock tomorrow, but need to stay put for now. Travis and Paul are in 'bachelor' mode and managing well. Travis insisted on buying his teacher a reading 'pointer' for a belated Valentine's gift! She deserves much more!
Hugs,
Nicole
Kat is such a fighter and you both are such an inspiration to us all. I think of you often and wish I could 'fix' everything. Keeping you, Kat, and 'your 2 men' in my prayers.
ReplyDelete