Adventures in KAndylaND
August: Our Family's Diaversary Month
by Christy Vacchio
For every parent, the birth of their child is a significant month. But for the parent of a child with a rare disease, or a significant diagnosis, the month of diagnosis is also a time that is forever remembered. For some, especially in the diabetes world, we call this our "Diaversary". August is always a hard month for us because both of our children were diagnosed with a rare form of diabetes that month. Neonatal Diabetes
11 Years With a Life Changing Diagnosis
by Christy Vacchio
Eleven years ago we were entering Brenner’s Children’s Hospital in North Carolina to become pioneers for a rare disease. While Andy was not the first patient in the United States to come off of insulin, he was definitely in the inaugural class (we think one of the first 5 at least). For 17 months, we kept him alive by…
Closing the Gap: The First Two Weeks on Carbamazepine
by Christy
We are now at the end of the second week on Andy’s new medicine, Carbamazepine (Tegratol), and so far, we have had no adverse side effects. We started him on a small dose of 2.5 ml (50 mg) twice per …
Update
by Christy
I know it’s been a while since I’ve done a major update. Life has happened. I have been back at work full time since August of 2014 and had a part time job that felt like a full time job …
Spreading Awareness
by Christy
One of the problems of having a rare disease is that awareness does not spread very quickly. It surprises and saddens me that we are coming up on 10 years into a new treatment for about 90% of patients with …
New Tests, New Diagnoses, New Pills
by Christy
It’s been an absolutely crazy busy month which is why I haven’t posted anything in so long. Andy graduated from Kindergarten on Friday and the last day of school was Monday. We are trying to find a house to buy …
Day #5 of D-Blog Week: Awesomeness
by Christy
Awesome things – Friday 5/13:In February the #dsma blog carnival challenged us to write about the most awesome thing we’d done DESPITE diabetes. Today let’s put a twist on that topic and focus on the good things diabetes has brought …
Going Up and New Families
by Christy
Finally after nearly 3 months of dealing with lows, both kids are trending up in their blood sugars. Noses are not visibly running any more on a daily basis and all stomach bug issues are gone. Yesterday Andy had a …
Hopes and Fears Pop Up in Dreams
by Christy
I know that dreams can have a lot of meaning and sometimes they are a little mysterious and hard to understand. Then at other times, what you dream is very straightforward and hits you in the face. Last night I …
Health Activist Writer’s Month Challenge – Day 1
by Christy
The people over at Wego Health have issued a challenge. Blog every day for the month of April on your condition. It can be difficult for us to sometimes come up with a topic, especially when things are going smoothly …
Developmental Ups and Downs
by Christy
We were dealt a blow yesterday. Katie is behind. When Andy was on insulin so many years ago, we knew he was behind. He wasn’t doing anything he should be doing right on track. As a parent, you always want the best for your child, but you also instinctively “know” when something is wrong.
Cheers and Fears
by Christy
As I walked out the door with Andy this morning, I hesitantly let go of his hand. Just yesterday I was telling Dan how we had been practicing every morning with walking next to Mommy instead of holding my hand …
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