Monday, May 7, 2012

What's Next

We finally had our urology follow-up last week and hopefully have an answer to Stephen's problems in the "man parts" department.  I know when this poor kid is older he's really going to hate me for this one, seems the only way to solve the problem so we can move forward with this bladder stuff is to have him (finally) circumcised.  The hormone cream the doctor prescribed hasn't worked in getting the skin to loosen open and his pee hole (a very technical term) to open, so Dr. Pohl  has suggested we just do the circumcision now and that should solve the problem.  We always wanted to have Stephen circumcised, but when he was first born, he was too sick and there were too many other things going on for it to happen.  Then each time when he went in for surgery, we asked them to do it, but again were told there was too much going on.  So now it's finally time.  The only downside is that for Stephen, it's no longer just a snip snip, it's surgery under general anesthesia.  Boo!!  The doctor says it's a really easy quick procedure, 30 minutes, but I just hate the fact that it's under general anesthesia.  And the new Children's Hospital outpatient surgical center has not yet contracted with our insurance, so we have to have it done at the hospital.  Another big boo!!!  I HATE and completely DESPISE waiting in the hospital's surgical center.  It just brings back very anxious and stressful memories.  And I feel like every time we go in that hospital, we get stuck there.  I don't yet have a date for his surgery, but when I do, I'll be sure to post it.

So once we get the surgery done, than we have to wait about two weeks for him to heal, and then we go back to the hospital to have the VCUG where they'll insert a catheter and check to see what his bladder size and capacity is like.  Then it's back to Dr. Pohl's office to review the results and determine what's next.  Hopefully the answer will be that Stephen doesn't need to do bladder cycling and we'll be done with all of this and Stephen's transplant surgeon will agree and activate him on the transplant list.  That's what we're hoping for.  And then it'll just be smooth sailing until transplant!!

In other news, Stephen's growing and thriving!  He's trying so hard to walk and wants to be on his feet constantly!  Both grandparent's bought him a walker for him to scoot around their houses when he visits and he loves it!  He rolls around everywhere opening up cabinets and chasing after Mabel.  And he's super vocal now!  He loves to hear his only voice and makes this cool gargling sound in the back of his throat that he uses when he wants to get moving.  We call it his motor! And he's now able to tell me by pointing and say "m" sounds and mama when he wants something.  Which is so huge!  And he's become a big helper with his medications.  I put the syringes in his little tube and love to push the plunger down.  It's a really game for him and is so great for his fine motor skills.  I'm so proud of the progress he's made with his speech and fine and gross motor skills.  Some times I just sit and watch him and am in complete awe.  He amazes me more and more each day and sometimes the emotion and the feelings of what he's been through and what he has accomplished just totally overwhelm me.  And I swear each day, I love him more and more!!

Here are some pictures I took during our recent trip up to York to see Mimi and Poppy.  The first two were on a little ride at the Mall with Mimi while Mommy got to do some shopping.  And the last one was on a walk through the neighborhood.  We took two long walks throughout their big neighborhood and Mommy learned that it's time to slather on the sun tan lotion!! :)

And here was a super proud and precious moment from last night.  Stephen still isn't crawling, but it's such a blessing that he will now roll over onto his tummy.  He always hated being on his tummy probably because of all his tubes and surgeries.  But lately, he's been rolling over and sleeping short periods of time on his tummy which is such a huge milestone for him.  I was so excited last night, that I had to take a picture!  And then when Bill and I went in at 11:00 PM to give him his medications and hook up his over night feed, we found him cuddling with his monkey.  Monkey and pacifiers are his bed time staples!  That face just makes me melt every time!!!


  1. I love the last picture ... sooo adorable!! I can't imagine the emotion you must feel when you see him reaching these milestones -- amazing! Hope he has a great week and you have a fabulous Mother's Day!

  2. So precious! That last one made me tear up. Love to hear how well he is doing. Of course he is! He has AMAZING parents!

  3. Stephen is looking absolutely wonderful. I am sure all will go well with this surgery--he has been such a trooper--we know he will "ace" this one too! Uncle Dick says
    Lindsey, we both want to wish you a HAPPY MOTHER'S DAY...You have certainly set the gold standard for all to follow. You are the BEST and we are so proud of you!!!!
    Aunt LuAnn and Uncle Dick

  4. Lindsey
    Stephen is so amazing!!! The last two pictures with him sleeping touch my heart so deeply. He is beautiful. I continue to pray for all of you. Happy Mother's Day! You are a wonderful Mother.
    Mary Elizabeth

  5. Stephen is such FUN when he visits York. He loves the outdoors, and of all things -- here is a Male who tolerates shopping (until he gets older, huh?). He can copy almost any motion and likes to loudly express his pleasure. People who see him are astonished at how wonderfully he has developed ..... thanks to his Mommy and Daddy!

    Love the adorable photos. Hope the next few weeks are a breeze!

    Love to all and thanks to everyone for their caring and kind thoughts ..... Mimi & Poppy Noll