Railroad Wife, Railroad Life

The first week in August we will be heading up to Cincinnati for Spina Bifida Clinic, a urodynamics test, and a consultation with the Pediatric Plastic Surgeon.  Now that all of these appointments are made I decided to call Dr. Stevenson's office to see about scheduling a surgery date.  As luck would have it, the person who answered the phone does surgery scheduling for Dr. Stevenson.  After looking at the schedule she said we are looking at a surgery date the end of August or sometime in September.  The scheduler will be calling Plastic Surgery tomorrow to see what their schedule is.  Hopefully by the end of the week or beginning of next week we will have a date.  I can't help but think how cool it would be if they scheduled the surgery on the 2nd anniversary of our fetal surgery AKA Butt Day.  Even though we didn't celebrate Butt Day with more than a photo session last year, it really holds a special place in my heart.  I will let everyone know ...

Yesterday morning Kennedy had her second sedated MRI in six months.  The results of her sedated MRI in December showed she had 3 dermoid cysts on her spine.  After her rapid MRI in February, Dr. Stevenson said he wanted to have another sedated MRI to determine if these cysts were growing.  Each of them has grown 2-4 mm's since December.  Right now they aren't causing any problems, but Dr. Stevenson wants to have them taken out before they do become a problem.  He's afraid if we wait more than 6 months they will eventually start pushing on Kennedy's spinal chord and cause her to lose mobility in her legs.  I asked him if we could wait to see what the upcoming December sedated MRI would show in growth.  He told me he'd like that MRI to be a post-op one to make sure everything looks as it should. While Dr. Stevenson is removing the cysts, he will also be detethering Kennedy's spinal chord.  Normally the spinal chord freely moves through the spinal ...

May 4, 2015 - Cruise Day 1 Today we embarked on the Carnival Cruise Ship, Fascination.  We arrived just after 1pm and were able to go to our cabin immediately.  Thinking ahead, we packed our bathing suits in our carry on's so we could head to the pool.  First we enjoyed lunch on the Lido deck.  Of course Jonathon had to have some ice cream afterwards.  We came back to our cabin, changed into our bathing suits and headed to the pool. While at the pool we enjoyed some Bahama Mama's and soaked in the sun.  Our sunning was interrupted by the safety briefing. After the briefing we came back to the cabin for a nap.  An hour before dinner we went to The Palace Theater to see the welcome show.  After the show it was time to go to our dining room.  We were the last couple to arrive at our table.  There were 2 couples who sat with us.  One was from South Carolina and the other was from North Carolina/Virginia.  As his appetizer, Jonat...

Obviously it's been well over a year since I birthed my last child.  However, I have a lot of friends who are either new mommies or are on the verge of becoming a new mommy.  I wanted to reach out to all of you and let you know the many sides of PPD (Post-Pardum Depression).  Due to the nature of Kennedy's pregnancy and delivery, I had 3 total Post-Pardum visits.  At the first 2, they gave me the Edinburgh Test.  During my second appointment the Doctor expressed her concerns about me developing PPD.  This particular visit came after some family drama arose, so I figured my answers were a direct result from that situation.  I declined any medical intervention and explained the situation to my Doctor.  I told her that I knew once Kennedy was out of the NICU and we were home, trying to get on a normal schedule, things would be fine. Fast forward 6 weeks and I felt like someone had thrown me into the deep end of the pool.  I couldn't understand...

Before I get to the results from the tests and appointments from the last two days, I'd like to reflect on something first.  Whenever we are fortunate to stay at the Ronald McDonald House in Cincinnati we are always treated so kindly by the staff and volunteers.  It's always so nice to see volunteers who were there when I was pregnant with Kennedy.  I was fortunate enough to eat breakfast with one of those volunteers yesterday  morning while Kennedy was in her sedated MRI.  He is such a kind man who loves to sit and listen to the stories of the house guests.  My Grandma would always talk with him while I was in the hospital on bed rest.  This morning before we checked out I was so happy to introduce Kennedy to him.  He's an amazing man and I am so thankful for his friendship. Monday morning at 6:45AM EST, Kennedy and I arrived in the Radiology department at CCHMC.  I was first informed that I would be able to stay with Kennedy after they pu...

Today while driving into Cincinnati, I got a little emotional thinking about how far we've come in a year.  Even now as I write this, I can't help but choke up.  In spite of all that happened leading up to her birth, God gave us such an amazing little fighter.  She inspires and amazes me more every day. One thing that really blind sided me today was being told that Kennedy will soon be cast and fitted for AFO braces and a stander.  The AFO braces are basically leg braces that fit through the calf and the ankle.  One of Kennedy's feet points in a little bit and when she tries to bear weight on that foot, it looks like she's trying to stand on the side of her foot, instead of flat footed.  The stander is basically a wheelchair, but you stand in it, instead of sit.  It has wheels on the side, as well as two smaller wheels out front and two in the back.  Rehab also wrote out a prescription to have Kennedy begin stretches in her weekly PT sessions. ...

This week has had me shedding both tears of happiness and tears of sorrow.  On Monday, Kennedy had an MRI and follow-up with Dr. Stevenson, her Pediatric Neurosurgeon.  The results showed that Kennedy's ventricles are finally starting to stabilize.  This is such great news!!!  I had begun to prepare for a shunt placement.  Last year, Savannah's birthday party had been overshadowed by the idea of fetal surgery with Kennedy.  I didn't want Savannah's birthday party to be overshadowed this year by a shunt placement.  Kennedy goes back in September for another MRI and follow-up.  In November around her 1st birthday she will have a sedated MRI where they will scan both her brain and her spine. The tears of sorrow came yesterday when I saw an update for a very special person in my life.  A very good friend of mine is dying.  This woman has been such a profound cornerstone in my life since the very beginning of our friendship.  I first m...