a new path-a new drug

We are home from our trip to Washington, DC to allow Corrigan to participate in study for a new drug to treat his disorder.  There were some stressful moments due to Corrigan’s anxiety with new situations but the folks at Children’s were so kind and professional, they did a wonderful job with us while we were there.

(hanging out in the hotel)

It has been a rocky transition due to the fact that the new drug is not currently able to be administered through the g-tube so we have had some struggles with Corrigan taking it orally, but he took 100% of his morning and afternoon dose today and I think that in a few days it will become less of a struggle for him.

(snuggled in before bed)

We had some interesting conversations with child psychologists about Corrigan and I will post more about that later this weekend but we are happy to be home and look forward to finding out, next week, how his labs return after a full week on the new drug.  Not looking forward to DC traffic again but thankful that we live within driving distance of experts at Johns Hopkins and Children’s National in DC.  I don’t know how we would handle this disorder if we lived in the rural midwest.

(Crayola Twistable crayons are awesome-but FYI not washable)

(looking for airplanes)

(“Cheese!”)

One of the best parts of our time in DC was that I was finally able to meet my friend, Sairah, face to face! Her little boy was born with the same disorder as Corrigan but was successfully transplanted nearly two years ago and is doing great! We have been “internet” friends for a long time but to finally be able to hug her, to look into her eyes and make that connection was such a blessing. I’ve said it on Facebook so many times and probably said it many times here, but there is just something special about UCD families. I’m sure it is the same way for all of the other disorders and diseases. Support is key and I have had the distinct pleasure of receiving so much love and support for others living with Urea Cycle Disorders, I don’t know how I could have made it this far without them. Whew, to be able to see our two boys playing together…laughing and smiling…it takes my breath away. I wish we lived closer but the internet erases the miles.

(Sairah!-she brought us cupcakes. TRUE FRIEND, right there!)

You know what else I loved about being in a children’s hospital? There were no looks of pity from people when they saw Corrigan with his feeding tube backpack on, or when I needed to bolus his feeds.  There were lots of kids with the tell-tale little white tubes peeking out of their shirts, and tiny backpacks on tinier toddler backs.  No one felt sorry for us or told us “Bless your hearts.”  We were among “our people” and there wasn’t an ounce of judgement, not a lick of pity, not a hint of people trying not to look but totally looking.  Other than the man who helped take the bags from my trunk at the hotel, there were no “what’s wrong with him” remarks.

It was a comfortable place to be and when the new children’s hospital opens, April 29th, at Johns Hopkins we will likely find ourselves solely among “our people” again but in a different building.  Where the kids are not disorders, they are simply kids…kids with bald heads or wheelchairs or long white tubes carrying nutrition directly in to their tummies.

For those of you that knew about our trip in advance, thank you for your prayers and offers to help us while we were in the city.  We are so grateful for your love and support every step along the way!

 

2 thoughts on “a new path-a new drug

  1. Mindy, you and or family are so overwhelmingly admired and respected. Imagine the great tragedy of children with no one to care. And for all the good will, the sympathy, the prayers and good wishes of all the rest of us, the task boils down to 99% yours to handle and resolve. I hope with all my heart that the day will come when you will see the benefits of your good work and that Corrigan will someday understand the depth of your sacrifice.

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