Sorrowful Endings Give Way to Wonderful Beginnings

This week has been a little out of our ordinary, since for the past few years we have been in Physical Therapy one to two times a week with the same therapist. This week marks the first of many to come without Mrs. Kim. We came to love her as we did Lizzy's PT with BabyNet, Mrs. Jen; and sadly we had to say our goodbye. Mrs. Kim had to move out of state, so her time with Lizzy was cut short. But, in those times we have had so many wonderful things happen.

Pink Snake Skin KAFOs

Lizzy was able to get KAFOs (Knee, Ankle, Foot Orthodox) to help with stretching her hip/thigh out. She has a new wheelchair in the works of being built that will help her in every way possible. Kim has been so awesome with trying everything to help Lizzy achieve goals we set for her. She wouldn't stop trying either, by coming up with ideas and seeing if those ideas could be made a reality.

Kim even made sure that Lizzy would not go without PT in her absents, for this I can never be more grateful! We might not be in PT twice a week, but I will take that one day a week above none at all. With Mrs. Kim by Lizzy's side, even if it isn't physically there, this little girl will keep her goals in check.

Wheel in back propels as Lizzy pushes, chair was for demo with wheel.

As far as Lizzy's chair goes, Kim has helped work with the medical equipment guys to insure that this will be exactly what Lizzy needs. She is that voice for us when we are not able to speak. She knows exactly what is needed and where to go to get it, or whom to go to, to get the ball moving. I can not wait till Lizzy gets her new chair so we can send Mrs. Kim video of Lizzy in it. Along with video/photos of Lizzy standing full upright with her KAFOs on.

VEPTR and Beyound

We tried so hard to keep Lizzy out of extra surgeries, but had to come to a unanimous decision on her and her health. We did all the research we could, read the book we got from the Orthopedic surgeon  cover to cover. Found videos that showed what the surgery would be like, talked with her Physical Therapist to see if she knew of any other child who underwent this surgery. We really did our homework on this. And it finally came down to rods would equal longer fuller life, without rods life would become shorter and organs would become dislodged from their rightful places.

This is the exact placement of Lizzy's rods. One on each side of her spine.

The day came that we had to set the date and put the back brace down for good since it was just buying us time. I prayed I would not go into labor since I was due with a few weeks from this surgery with my second child.

The scans had been reviewed (MRI and Xray), the MRI was done for Neurosurgery to check the syrinxs (little blob looking things in the spinal cord) in Lizzy's spinal cord. They had been keeping an eye on one of them in the top part of her spinal cord that was dealing with increased pressure.

Before VEPTR surgery

We got a room at a local hotel and geared up for the next few days. We knew that recovery would be about 5 days in hospital stays and about 3 weeks recovery at home. Lizzy's PT told us to take before and after pics and they would show us the dramatic difference that this surgery was going to do for her. So that night we did just that. 

After VEPTR surgery

We said our "we'll see you when you wake up after surgery", little did we know that those words wouldn't happen till a week later. After Lizzy's surgery she was taken up to the PICU and was still on a ventilator. The doctors came by to check on her and to talk with us. Surgery had went as expected and she did great throughout it. They placed the VEPTR rods first and then Neurosurgery went in and placed a shunt in her spinal cord to help drain the extra fluid around her syrinx. 

The reasons for her having to stay so long in the PICU and on the ventilator were tied to the shunt. The drain for her spinal shunt was placed in her chest cavity; so every time she took a breath it would cause a suction to happen, and pull the extra fluid in. Which would then recirculate throughout the body. (This is what the spinal cord does naturally) The problem that happened was there was a LOT of fluid around the syrinx, more than the doctors could see in scans. This extra fluid was causing one of Lizzy's lungs to collapse, they had to do a tap twice before things started to look up.

Ronald McDonald House of Charleston

Once Lizzy was able to come off the ventilator she was moved to a step down unit. During this time my husband and I were back and forth between the hospital and the Ronald McDonald House, since you can't sleep in the PICU area. Once Lizzy was moved to the step down unit I stayed in the room with her and dad came back and forth to the hospital and RMH.


The day her release paperwork came by the nurses station was the happiest day for all of us. We loaded up in the car and made sure Lizzy had padding for her carseat and that she was given one last dose of pain medicine before we started our 3 hour drive home. Once home we got her settled in her room and home recovery started.

Pulled her IV out of her hand, so one was placed in her foot. This is after a lengthening surgery.

Fast forward 3 years and she has undergone 6-7 surgeries related to the VEPTR rods alone. She is on her second set of rods now and has to go back in for lengthenings every 6-8 months, depending on how fast she grows. We go back every 3 months for xrays to check how her spine is looking. She started with a 60+ degree curve and within a matter of hours became straight with a 2 inch growth spurt. The lengthening will continue till she reaches spinal maturity which is around 14 years old for girls.

Lizzy's xray of her rods.

The Beginning of Our Journey

3D image of Lizzy

 When I was 20 weeks pregnant we found out that our daughter had Spina Bifida. I had heard a little about Spina Bifida in my teens, but never really knew what it was. Then when we heard those words from the doctor "Your baby has Spina Bifida" we were floored. At that time all we wanted was to learn more on what SB was and what caused it. 

before I got to see my girl

I held everything together in the office and just listened to what the doctor had to say. Then on our way home it really hit me. All I could think was "Am I to blame? What could I have done to prevent this? Why us? " I was mad at the World at that time, because I had been told for 5 years that I would never have a child. Then to finally get pregnant and do everything to a T that the doctor told me to, and find out that our daughter was going to be born with this was the hardest thing ever.

on her way up to the NNICU

As time went on, we got more and more educated on what Spina Bifida was and what we should expect once she was born. Then the time came to get induced and have our little girl. As soon as she was born I got to see her for a split sec, before they took her into another room. Then before they took her up to the NNICU they brought her by for us to see her. The next morning they took her into surgery to close up the hole that was on her back. We didn't get to see her before sugery, but we were there right when she got out. It was 3 days after her surgery that we finally got to hold our little girl. Finally we were able to take her home.

day after 1st surgery

She was also diagnosed with hydrocephalus (fluid on the brain) while I was pregnant. Before she was a month old she had to undergo another surgery. This surgery was to try and releave some pressure off of her brain from the hydrocephalus. This surgery was called 3rd ventriculostomy (placing a hole in the floor of the third ventricle of the brain). After a week her hydrocephalus had not changed so her neurosurgen desided to go ahead and place a Ventriculoperitoneal shunt (also known as a VP shunt). After her shunt was placed and we finally got the number of the flow down she has been fine.

Lizzy and Matt (dada)

At almost a year old our daughter was diagnosed with scoliosis. We have fought to keep her surgeries down, since she had to go through so many in her first year of life. But we are learning that scoliosis is as stubborn as we are. We are now left with having to under go yet another surgery. This surgery will consist of a thing called VEPTR (Vertical Expandable Prosthetic Titanuim Rib).