Stephen's Journey: 4 Months

Tuesday, April 5, 2011

4 Months

Yesterday was Stephen's four month birthday. Can you believe it?! Sometimes it feels like he was born just a week or two ago, and other days it feels like he should be a year old. I think it seems that way because it's really been since October 19th that we've been dealing with everything. Not a day goes by that I don't think about everything that has happened since that Tuesday morning but it feels as though years have passed and I've aged about five years myself. And sometimes it feels like all those terrible things we went through actually happened to someone else. Because things like this happen to other people, not us. And also because on the surface we have a healthy baby boy; something no one ever thought would happen. It's just so weird to think 5 short months ago we actually picked put a cemetery where Stephen would have been laid to rest had he not survived. It's sickening thinking about it now. But at the moment it seemed like the right thing to do.

Now we find ourselves struggling with much different things. Things that ALL new parents struggle with; getting Stephen to bed, getting him to sleep through the night, figuring out a routine/schedule, and trying to figure out if all this crying is normal or if something is wrong with him. We never read any books and went to any classes so we are learning as we go and trying not to do things that will come back to bite us in the ass. Like getting him so addicted to his pacifier that he can't sleep without it. Oops....we already did that! Ugh.

But all-in-all I think it's been going really well. His health couldn't be better right now and that's what's most important. And now that the weather is getting nicer, we've been able to get outside and get some exercise. Plus, Stephen loves going on walks which makes it even better.

Our goal for next month is to continue to grow and get longer and be cleared by the pulminologist so we can check one more doctor off the list. That would be awesome! And as always ward off any infections and keep his dialysis going as well as it has been.

1 comment:

AnonymousApril 6, 2011 at 9:45 AM
Happy Birthday Stephen!!!! There is not a day that goes by that we do not speak of you and all you have been through and what a figher you are! What a wonderful miracle God has bestowed upon this family. We are all so grateful and will continue to pray for you.
Love,
Aunt LuAnn and Uncle Dick
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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!!