Some Tough News

About 3 weeks ago, Patty noticed that Vera was limping one day at her house.  We didn't think too much of it at first.  We examined her foot and leg with no obvious sign of redness, swelling, bruising or pain.  I thought maybe she had a bug bite or stepped on something that hurt her foot.  The limping went on for a few days, so we quit wearing Crocs and started wearing socks with shoes.  The limping continued.  We pressed on her foot, twisted it in all directions, and asked her daily if anything hurt.  Nothing.  One day she told me that her foot hurt because she ate too much.  haha  Not helpful.  One evening, I took her to buy new tennis shoes thinking that maybe shoes that fit well with good support would help.  Didn't help.  The limping continued.  I began to worry a bit.  I took her to Dr. Elshoff and he checked her over.  He said her hips were aligned properly, she had good range of motion and didn't show any signs of pain or swelling.  He said to keep an eye on it.

One Monday, after about 2 weeks of limping off and on, Patty was very concerned.  She said she felt something was definitely wrong.  We talked for a while about what we observed.  Patty said she's noticed that it takes Vera a very long time to go up and down her stairs compared to other kids.  She also runs a little wobbly.  I agreed.  I called Dr. Elshoff's office again and we went on Wednesday to have it checked.  We talked for a while, and I asked if we could have it x-rayed to make sure there wasn't a hairline fracture somewhere in her leg.  Dr. Elshoff agreed and sent us to Dayton Children's to have it done.  He advised having it done by Thursday so we could have the results before the weekend.  I had Parent/Teacher Conferences that night, so I met Adam after school and he decided to take her to Dayton to have the x-ray done that night.  The outpatient x-ray is open until 11. 

Adam said that Vera was exceptionally good at the hospital.  She was polite, cooperative and happy.  She was a little uneasy about the x-ray at first, but Adam stood beside her with a lead vest, and she was fine.  They had to wait after the x-ray to be sure that they got good pictures of what they needed.  They took 5 x-rays from the knee down on her right side.

I talked to Adam after conferences and he said they were still in Dayton, so I went to church for our parish mission speaker.  I did some praying for Vera, but honestly I wasn't overly worried. 

When I walked in the house, Vera was in bed and Adam was sitting on the couch with tears running down his face.  I was immediately worried, and he told me right away that Vera has the same condition that he has.  Multiple Osteochondromas.  He said that Dr. Elshoff called him before he left the hospital and shared the results of the x-ray.  We were pretty devastated.  Adam has a lot of painful memories of his experiences with this condition.  We sat and cried for a while.  I tried to be really positive.  I told him that we'd do whatever had to be done to take care of her.  We have good health insurance.  Medicine and technology have changed so much since he went through this 20 years ago.  I told Adam that this is God's plan for us, and God gives us what we can handle.  This is our Cross to walk.  I kept saying that it could be so much worse.  I did some praying and went and laid with Vera in her bed.  She was still awake and asked me to rock her to sleep.  I gladly took her to the chair and sang some songs to rock her to sleep.  What a long day!

Multiple osteochondromas is hereditary, and is basically extra growth of bone and cartilage at the end of long bones.  It is considered to be a tumor, but it is benign.  It tends to grow near growth plates because there's space for them to grow.  It can pinch nerves, and affect muscle and bone growth.  Adam had these growths in his wrist, ankle and knee.  The wrist and ankle required reconstructive surgery because the condition caused his bones to grow at an uneven rate.

This was Wednesday night.  We were referred to an orthopedic specialist at Dayton Children's.  Somehow, through the grace of God, we were able to get an appointment on Monday.  We did a lot of praying over the weekend, and it was hard to talk about.  We were fearful that we'd discover spots throughout her body.  We tried not to read too much about it on the internet.  We had very little information and a lot of questions. 



Meanwhile, through the night on Wednesday, Vera started coughing and barking like a seal.  She was running a low-grade fever.  I decided to stay home with her on Thursday morning and take her to Dr. Elshoff.  This was the second day in a row we visited that office.  Vera checked out with clear lungs, throat and ears.  Dr. Elshoff said she just had a bad cold.  Over the weekend, things didn't get any better.  We didn't get much restful sleep, and gave her Ibuprofen consistently.  Sunday night Vera's fever spiked to almost 102.  We decided not to go to after-hours because the pharmacies were already closed.  So first thing Monday morning, before we went to Dayton, Adam took her back to Dr. Elshoff--the third time in 5 days.  She had a double ear infection.  We had just enough time to get her prescription at the pharmacy, give her a dose, and throw her back in her car seat and head to Dayton. 



We held our sick Vera tight all through the weekend and prayed for the best!  Does Adam look sleep-deprived?  We all were!

After a long wait, we got to meet Dr. Albert, who seemed very nice and knowledgeable on multiple osteochondromas.  He asked about the family  history and looked at Adam's wrist and arms.  Then he physically examined Vera.  He felt and moved all of her joints, and checked her back and ribs.  He felt a small spot on her ankle and another smaller spot in her shoulder area.  He took a standing x-ray from her pelvis down to look further at the spots on her ankle and leg.  The x-ray showed two small spots on her right ankle.  One spot is growing on the smaller leg bone and it is growing posterior, toward the backside of her body.  The second spot is very tiny and it's on the outside of her leg.  He said at this point there is no reason to be overly concerned.  We need to monitor her as she grows to be sure that these spots don't interfere with her growth.  It's certain that these spots are going to grow, but it is uncertain how much.  He advised that we keep an eye on the limp.  If we notice it getting worse, he wants us to come back.  There is not a reason to worry about the spot on her shoulder as of now.  There wouldn't be any reason to remove it unless it is causing pain or discomfort.  This spot explains the grating sound we hear when she rotates her shoulder.


Waiting for the doctor.  Thank goodness we brought a whole bag of snacks and toys to keep Vera occupied during the long wait!

We talked briefly about future treatment if this causes nerve problems or uneven bone growth.  As we suspected, things have changed since Adam went down this road.  Instead of reconstructing, they use a plate of some sort to help the bones grow at an even rate.  We'll hope and pray we don't have to worry about those procedures.

He said there's a 50% chance that this can be passed to Vera's offspring as well as our future offspring.  From a genetic standpoint, they know exactly what happens to cause this.  I asked how commonly he sees this, and he said on a daily basis he sees this condition.  In fact, he had another patient in another exam room with the same thing. He showed us an x-ray of a patient who had this throughout his entire body so we could compare.  We could be a lot worse off!  Dr. Albert said that Vera's hips and legs look symmetrical and normal.  We need to go back in 6 months to look at the growth of these spots and ensure new ones aren't growing anywhere.

Adam and I were fairly relieved to hear this.  We were happy to hear that there aren't any spots in her wrists, elbows, knees, etc.  Hearing that this is a common condition put me more at ease.  In the meanwhile, we will continue to pray that new spots don't develop and the current spots don't grow much.

The true blessing is that Vera is not in pain and she's normal and happy.  We owe so much gratitude to Patty for alerting us to what she saw.  We have much to be grateful for.  We'll leave this in God's hands, pray for the best, and continue to count our blessings!