Stephen's Journey: Storm

Saturday, August 27, 2011

Storm

The media is having a field day with Hurricane Irene telling us we need to prepare for this giant storm that's going to shut everything down for days. Personally I think they are overreacting, per the usual, and I really hope I'm right! But preparing for a storm takes on a whole new meaning not only now that we have a baby, but a baby with special needs. I started thinking about it yesterday in terms of some of the giant blizzards we've had or if we lived some other place like New Orleans and had to weather a storm like Hurricane Katrina with Stephen. I can't imagine what we'd do! We'd obviously have to evacuate very early to make sure we got out in time with all of Stephen's equipment, but what would we do if we ran out of medical supplies? And where would we go for medical care? And how much work it would be to get new supplies shipped out! God I can't even imagine how scary and how stressful it was for people with medical needs in the Gulf!? It makes me realize I need to keep extra supplies on hand ALWAYS and to really stay on top of Stephen's medication refills...just in case. Before Stephen, Billy and I would just make sure we had some soup, bread, and booze on hand. We could figure it out as it came but now we've got so much more to think about! We'll always have to worry about medications, but hopefully the next time we get a massive blizzard or hurricane, Stephen will done with dialysis and losing power won't be such a big deal!

1 comment:

KristenPorcheAugust 31, 2011 at 12:58 AM
I'm glad that you all weathered the storm so well. I hate to say it but we actually teased at the media as well. Here in New Orleans, a category one is just looked at as a really bad thunderstorm. We are so used to them that we usually just stock up on a few supplies, get together with friends, and ride it out together playing cards with very little worry. We do board up as a precaution, but that's just because if you don't insurance gets fussy and doesn't cover damage. But like you said, things are different now. I have been watching and worrying about anything this year. With Parker still in the NICU I couldn't imagine having to transport him somewhere if a storm came this way. I will probably never look at a hurricane the same now with a special needs child. They will all be cause for concern.
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Our Crazy Kidney Life

As many of you already know, our son Stephen, was born with a very rare kidney disease called Autosomal Recessive Polycystic Kidney Disease (ARPKD). When the disease was discovered during my 27th week of pregnancy, Stephen was given a less than 1% chance of living more than a few hours past birth. He was to have such severely underdeveloped lungs that the doctors said he would likely not even take one breath. However, on January 4, 2011, we were granted our 1st miracle - and Stephen came into this world crying (and breathing!) and fighting for his life with fierce determination. At 6 days old he had BOTH of his kidneys removed and began peritoneal dialysis. Stephen came home from the hospital when he was 59 days old requiring 12 hours of dialysis every night as well as enteral (feeding tube) feeds during the day and overnight.

On May 9, 2013, we were granted our 2nd miracle, in the form of a new kidney from an extremely generous friend. Stephen received a kidney from a non-related living donor at the Children's Hospital of Philadelphia. He spent 13 days in the hospital recovering from his big surgery and ever since has been living life the fullest! His life is still a delicate balance of medications and weekly lab work, but he's an extremely vibrant, loving, active 2.5 year old.

This blog is Stephen's journey told through my eyes (his mother's), thoughts, and emotions, with extreme highs and lows. But there's no way we would be where we are today without all of the support, thoughts and prayers from our family, friends, and readers! Thank you!!