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Showing posts from 2014

Update from Sedated MRI, VCUG, and Sleep Study Follow-up

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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 put her to sleep, but would need t

October Spina Bifida Clinic

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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.  The Rehab doctor believ

It's the wheel of the world, spinning around...

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 met the woman I affectionately call &qu

Test and Clinic Results - 5-20-14

Monday morning Kennedy had a follow-up MRI.  She wasn't as happy this time around as she was the last time.  Afterwards we were able to bump her renal ultrasound appointment up.  She made the ultrasound tech laugh because she kept placing her hands behind her head.  I'm beginning to thing this is Kennedy's security pose.  She sleeps like that all of the time! We met with Dr. Stevenson at 10AM to discuss the results from the MRI.  Unfortunately Kennedy's brain ventricles went from 46MM to 48MM since her MRI in March.  She is beginning to develop Hydrocephalus, which goes hand in hand with Spina Bifida.  Basically her brain is making too much cerebrospinal fluid and could potentially create unwanted pressure on her brain.  While Kennedy now qualifies for a shunt placement, Dr. Stevenson would like to wait 2 more months to give her ventricles a chance to stabilize.  She will have another MRI at the end of July.  If her ventricles haven't decreased in size we will pro

Kennedy's First Vacation

Last week we went on our first vacation since Kennedy was born.  We started out going to Jonathon's parents house in the beginning of the week.  Jonathon finally finished Savannah's pedal car, which he's been working on for over a year.  She really likes it, although her feet are about 6 inches away from the closest setting.  She likes to do the Flintstones thing with her feet though.  While we were there we also were able to celebrate the pending arrival of our newest Niece, Madilynn.  She is due in May, but I'm not sure she's going to wait that long. The last half of the week we went down to Pigeon Forge and Gatlinburg for the semi-annual Rod Run.  Jonathon was really hoping to find his first classic car, but was unsuccessful.  We rented a really nice cabin and had Jonathon's parents, Granny, and Cousin with us.  The first night there we went to Dolly Parton's Dixie Stampede.  Not only was the food amazing, but the show was pretty awesome too.  Kennedy s

Kennedy's Follow-up MRI

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Kennedy had another MRI on Monday, March 17th. She did really well considering she was actually awake for this one.  They even let me stay in the room with her.  When she had her MRI's in the NICU I wasn't allowed to go in the room where the MRI machine was.  I wasn't even allowed to be in the MRI area while it was going on.  I had to wait for her to come back to her bedside area.  It was nice to be able to be there with her this time.  The MRI tech said as long as I didn't put my hand above her face, I could even reach in the tunnel and console her.  Luckily I was able to give her her pacifier and she settled down.  The MRI didn't take more than about 10-15 minutes.  This was also a treat compared to the other MRI's she had in November which took 1-2 hours.  After we finished up in the MRI lab we had a follow-up appointment with Dr. Stevenson, the Neurosurgeon. He showed me the images of the MRI and explained what each picture meant.  The good news is Kennedy

Kennedy's 1st Spina Bifida Clinic

Yesterday morning we met with the Pulmonary doctor who read Kennedy's sleep study.  He said we could start taking Kennedy off of the oxygen during the day, but he would feel more comfortable doing another sleep study at 6 months old before taking her off completely. After the Pulmonary appointment Kennedy had a renal ultrasound.  The ultrasound tech was so nice.  She put a movie on for Savannah to watch while the ultrasound was going on.  Kennedy was a trooper and was asleep for the majority of the time. An hour before we had to run to the Clinic we met up with the Mom of one of Kennedy's roommates.  We had such a great time catching up with her.  She loved seeing Kennedy and even took a picture to show the nurses who took care of her. Later in the day we had the Spina Bifida Clinic.  She is currently 10 1/2 pounds and 21 inches long.  The head of the Clinic came in to examine Kennedy first.  She was very impressed with her movement.  We both agreed that for now Kennedy d

Off of the Merry Go Round

On January 4th, I had just come back to the hospital from having dinner at RMH when Kennedy's nurse received a call.  The Sleep Lab had an opening for her to do the sleep study that night.  Knowing it meant we could come home sooner, I told them we'd be happy to take the spot.  Around 8:30pm we headed over to the sleep lab.  About an hour later she had all of the electrodes hooked up and she was ready to go.  I was able to sleep in the room with her, which was a little strange.  This was the first time I'd ever been in the same room with her overnight. Kennedy kept with her every 3 hour schedule for eating.  I was able to feed her with her still being in the crib.  The nurses were amazing and allowed me to help them move her and soothe her when she began to cry.  Around 5:30AM the study was over and we headed back to Kennedy's bed spot.  I headed back to RMH to sleep for awhile. The results for the sleep study finally came back on Monday.  They had decided Kenne

Swallow Study Results

Kennedy had her Swallow Study on New Years Eve.  As predicted she doesn't have anything going down her trachea while she's eating.  On Sunday they put her back on oxygen.  She's at a 1/4 liter flow, but 100% oxygen.  She one episode requiring stimulation 3 hours after they turned it on, but none since then.  I truly believe they tried so hard to get her off the oxygen so quickly that it simply tired her out.  Because her sleep study is the only thing keeping her here at this point, she was placed on the cancellation list.  Basically if anyone cancelled she would be able to take their place.  Thankfully a spot opened up for Sunday night and she will be having her sleep study then.