Stephen's Journey: Firsts Continued

Thursday, February 10, 2011

Firsts Continued

Stephen had another big milestone this morning.....he had his first bottle!! Unfortunately, I missed it, but the nurses took lots of pictures for me and Bill and sent me a text message this morning. The speech therapist came to see him early this morning around 8 am and they tried the bottle. Stephen took only about 5 cc's of milk and they said he was pretty confused that there was something coming out. He's so used to the pacifier, but not when there's liquid involved. Later today we'll get to try again and then tomorrow we'll try the real thing!! :)

Update: we tried a bottle this afternoon around 3:30 pm and Stephen did great! He "drank" everything in the bottle; all 7 cc's. Momma was so proud! Although as soon as he was done though, he was off the charts mad! Luckily the pacifier and a nap soothed him pretty quickly.

In other "Stephen World" news, I've started working on all of his paperwork and things for disability and Medicaid. It's so weird to think he qualifies for these things and I feel kind of weird applying for these programs, but it will help us get some extra nursing help when he comes home. The way it looks right now, he'll be coming home with oxygen, a feeding pump, and dialysis. I know we can handle it all, but it's going to be a lot at first. But I cannot wait!!!

Here's Stephen enjoying some tummy time yesterday. Jess, Stephen's nurse, got some great pics yesterday and today.

6 comments:

AnonymousFebruary 10, 2011 at 5:41 PM
Oh these posts make me smile!!! God is so amazing and wonderful and I'm so glad he has blessed you with this miracle baby!!!!!

Ashly
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Amy PetersonFebruary 10, 2011 at 7:13 PM
What a great week for all of you!!! I LOVE all of these recent pics. He is such a sweet little man. Lindsey you look great too! Stephen is very lucky to have you as his Mommy. Xoxo, Amy
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AnonymousFebruary 11, 2011 at 9:08 AM
It's such a joy to read your stories about Stephen's progress. Keep up the good work little guy!!!
Love, Colleen
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UnknownFebruary 11, 2011 at 5:25 PM
Congratulations to fighting little Stephen! So happy to see all his milestones
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AnonymousFebruary 14, 2011 at 3:19 PM
Lindsey and Bill,
Stephen is an absolutely beautiful baby boy. These pictures are precious!
Thanks for sharing.....
Sue
PS Can't wait to see him on his first trip to Hepplewhite Drive!
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{darlene}February 14, 2011 at 7:11 PM
holy cow! girl, he is SERIOUSLY cute!!!! What amazing firsts! I shouldn't be surprised, considering what a fighter he is, but he looks so strong on his belly! precious gift from God.
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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!!