April 13 ~ Pediatric Orthopedic Surgeon Appointment

Lily had her appointment with the pediatric orthopedic doctor/surgeon. She is also a specialist in pediatric Spine/scoliosis issues. 

I did find out that the nurses at the Pediatric Neurologist office didn’t know her MRI was only of the brain and CEREBRAL spine. It did not go all the way to the base of her spine. I talked to two separate people at that office before her scan was done and they assured me it was the full spine, as we had recalled an injury she had on her lower spine in 2007. I was told if there were issues from that injury it would show up on the MRI. The orthopedic doctor read through the results of the MRI and said they looked over every little area of her brain and cerebral spine. Lily had the best person to read it: a neurologic radiologist. He found nothing that would suspect cancer, a tumor, or a mass.

She did a lot of testing on her muscles again.  When Lily was asked to do a wall push-up with her left arm, she was able to do it with no problems.  When she was asked to use her right arm, she couldn't push with any weight on it.  So she definitely has a lot of muscle loss on her whole right side.  She also checked her spine for curvature. She did not see any curvature, but ordered a standing x-ray of her spine. The radiology specialist and her orthopedic surgeon looked at the x-ray and showed us her pictures. There is no evidence of curvature, the injury to her back, or any tethering of her spinal cord. She did note her growth plates were finished, so she said to  Lily "I hope you're happy with your height, because you're about as tall as you're going to get!"  Lily looked at her and said she didn't like how short she was and laughed.  She's about 5'5", so she's not too short.

The ortho doc said if we can’t get things figured out, we may need to be referred to the Mayo Clinic. She doesn’t think it will come to that, as we’ve ruled out anything serious that would be causing Lily’s hemiparesis. We may be scheduling an EEG and/or EMG soon. She noted Lily had hyper reflexes, but she doesn’t have other symptoms of hyperreflexia or hyperreflexivity. The ortho doc said her symptoms are somewhat like Ataxia, which is lack of muscle coordination in movement, speech, eye movement, and swallowing. The only symptom of Ataxia she has is the lack of muscle coordination in movement. The other 3 (speech, eye movement, and swallowing) don’t pertain to her.

So this is where we are. Lily has to be fitted for an AFO (ankle foot orthosis) and a DAFO (dynamic ankle foot orthosis). One is for her to wear during the day, the other is for her to wear at night. They will cast her leg and take a mold from that to make the AFO/DAFO’s. After they take that mold, we have to go back to the Orthopedic doctor and have her foot/leg put in to a cast for about 2 weeks until her AFO/DAFO’s are done. 4 weeks later we get to go back to see the pediatric orthopedic surgeon to see if the AFO/DAFO’s are helping. 

Our heads are still spinning from all of this information.  I'm hoping we are getting somewhere now.

April 11 ~ A bit of positivity!!

Lily was asked back in November by her choir teacher if she could try out for the Wisconsin State Music Association Middle School Honors Choir.  Well, she  just had her audition  and sounded beautiful! We couldn't be more proud of you! She had to do some sight reading, and hadn't learned how.  She did awesome with that as well! Now we have to wait until June to find out if she made it. 

If she didn't make it, she still did something only her and one other student from the Shawano School District did this school year: TRIED OUT!  Just trying out is a big honor!  She was selected because she is a leader in her choir classes, and she is talented.  If she did make it, she will get music to practice, and then the weekend of October 30 and 31 she will travel to Waunakee along with everyone else who made it.  They will practice and then perform at the Marriot Madison-West for the public, and will also appear recorded and played on TV (I don't remember the station though)  :)

April 10 ~ 2nd Chiropractor Appointment

Lily had several back cracks on Wednesday, and by Thursday, her back was extremely sore.  But the trooper she is wanted to go to school.  So off she went.

Today we had a second appointment.  The chiro adjusted her back "more gently" and also did a deep heat treatment on her foot instead of the ultrasound.  Neither one has helped her.  She has another appointment scheduled for April 14, but depending on what we find out at the orthopedic surgeon appointment, we may cancel and forgo any chirporactor appointments.

April 8 ~ First Chiropractor Appointment

Lily saw a chiropractor last night for her hemiparesis, and needs to go back Friday. She had ultrasound therapy on her foot as well. Not sure if it has helped, but it has only been once. The chiro said her hemiparesis could have come from a pinched nerve, or even a viral infection like encephalitis. Monday, 
Lily has to see the pediatric orthopedic doctor/surgeon in Green Bay. Maybe she will have more answers? It's really frustrating to have to take so many days off running around. But I will do anything to get Lily better!!

April 7 ~ FRUSTRATED!!

As I am trying to get a referral for Lily for orthopedic physical therapy in Shawano, I am informed by the nurse of her pediatric neurologist that he wants her to see a pediatric orthopedic SPECIALIST and not THERAPIST. Good thing the nurse got that right when she called me last Friday! <insert sarcasm> Big difference there!

So now we have to make another trip on Monday April 13th to Green Bay to see the pediatric orthopedic specialist. Maybe she can give us some more answers. It would be nice to have more answers. After we see her, she may refer us to therapy or go a different route. We'll get Lily figured out sooner or later! Lol

April 2 ~ MRI results!

WONDERFUL NEWS TODAY! But we are still left wondering....Well, the great news is that Lily's contrasting MRI of her brain and spine was "unremarkable" and showed no reason for her hemiparesis.  The not so good news is that her cause is unknown and we may never know.

Tomorrow she will try a chiropractor to see if she can help. Lily has been referred to an orthopedic therapist in Green Bay, but I am going to see if we can get her somewhere in Shawano.  SO hopefully between those two, Lily will avoid having surgery on her foot.  But that may be needed in the future, especially on the bunion that has formed.

Crossing our fingers and praying that we have no further issues!

April 1 ~ MRI time!

Lily's contrasting brain to spinal base MRI is today, to see if that will give us some answers. I was told it would take 1.5-2 hours.  She was in there for over 2 hours. 

I didn't realize they were going to inject her with dye, otherwise I would have warned her.  It took 3 people to try to find a vein, and then they finally called in a specialist.  4 pokes with the needle later, it was finally injected.  She was told her veins were "playing peek-a-boo" and that they were very "weak". They took a lot of images, and she was even strapped to the board at her forehead for a few images.

I hope we get results before Easter.  They said 2-3 business days for results, so we probably won't get them until Monday.

March 25 ~ Pediatric Neurologist Apppointment

Lily's pediatric neurologist appointment brought many more questions and few answers. He said it's not muscular dystrophy or any form of it. (At least that's ruled out though). She needs to have a brain MRI done next week (April 1).  He thinks her issues stem from an old injury to her spine, spinal cord, or brain. It could have already happened while I was pregnant with her. He wants her to do pain management and rehab in Milwaukee.

She did, however, get her condition diagnosed. Her whole right side of her body has muscle weakness. Her arm, hand and leg have weakness, but most of the weakness is in her lower leg and foot. He said that is called hemiparesis. So we have a long road ahead of us yet. He doesn't want to send her to an orthopedic surgeon yet, as he wants to see if therapy will work

On our drive home we tried to think of any injuries she may have had growing up.  In 2007, Lily fell off the back of a kitchen stool and hit her back on a shelf.  She knocked several vertebrae on the way down and couldn't bend over.  So I took her to the ER.  They didn't do an x-ray.  They made her bend over and said she was fine; bandaged it up and sent us home.  She still has a scar from it.  Timothy and I had her bend over to check it out.  Right where the scar is, there seems to be a bump or thickness there.  So now we're wondering if that is the cause of all of this.  Fortunately the MRI next week will go from her brain all down her spine.  So if that's the cause, they will find it.  

We are holding off on any pain management, rehab, or physical therapy in Milwaukee yet.  Driving that much is just not an option for us. We may try a chiropractor first to see if that will help. All of that will wait until after the MRI results.

Lily was very teary eyed when the doc mentioned it was her brain or spine.  She is scared that they will find something bad in her brain.  So I am going to get her in to see a psychiatrist and our pastor to talk with.  I told her she needed to talk with someone and not keep her feelings to herself. We are watching her very closely to monitor for depression.  She's been pretty happy through it so far, but it's starting to take its toll on her now.  She just wants it over. (Plus her best friend for the past 6 years or so will be moving soon, so that doesn't help matters either.)

When we find anything more out, I will be sure to let you know.  We have a challenging road ahead of us. The waiting is frustrating, and not knowing is worse.  We are praying that the MRI shows that Lily's problems are easily fixed, and cause no lasting effects.