Avery News

Avery went to the orthopedic today for a recheck (we go about every six months) this appointment has only been about 4 months since her last one.  Anyways she had x-rays done of her arms.  There are 5 osteochondromas up by her shoulder joint total.  4 on one arm one on the other.  Right now one of them is too close to the growth plate so no surgery.  Her right knee is also causing problems again.  The original bump is back and another one is causing numbness and pain occasionally.  The plan is to wait about 4 months and head in for surgery.  Hopefully the one osteochondroma on the shoulder will have moved away from the growth plate enough for Dr P to be comfortable going after it.  Surgery will be at all three sites.  Two arms and a leg.  While that sounds like a lot it means one time in the OR, one hospital stay, and one bill.  Avery is a trooper when it comes to recovering so I have no qualms about having all three sites done at once.
The bad news is our beloved ortho is leaving the practice and will not be able to see Avery come winter.  This saddens us immensely as this ortho has been with us through this whole journey and Avery absolutely loves her.  She will however do Avery's surgery in a few months.
Avery as far as we know does not verbalize her pain from these osteochondromas.  She has slowed down on our walks which lets us know that she is feeling some pain, but that pain is a normal feeling for her.
On another note the ortho thinks Avery has enough of limb length difference to have recommended a lift in one shoe.  It is a small lift but should help even out her hips a bit and help alleviate any posturing that she does to compensate.
This all sounds awful but in reality it is not.  Avery functions normally and is very active.  She loves life and embraces it fully.

Avery will have surgery

Avery had her 6 month check at the orthopedic yesterday. The good news is that her bone tumor (benign) has moved off the growth plate making her available for surgery. Dr. P said "it's time". The plan is to schedule it sometime in August. The surgery itself will last about 1 1/2 hours, performed by Dr. P. Avery will stay overnight at the children's hospital for pain management and be released the following day. She will be in a knee immobilizer for two weeks while the incision heals. After that its back to normal. We are hoping once this one is removed the pain she has been experiencing over the last few weeks will cease and that her leg will stop compensating. We will keep you posted on when her surgery is scheduled.

Another 6 months have slipped by

Every six months my youngest daughter is seen by her pediatric orthopedic doctor to evaluate her bone tumors.  14 months ago my then 3 year old had just broken her arm.  One day in the car I turned around and noticed a large bump with no bruise on her inner right knee.  A quick call to the pediatrician got us an appointment later that afternoon.  We saw a sub ped and her first reaction was "wow I have no idea what that is wow".  So reassuring to a mom who is thinking a cancerous lump has grown overnight on her baby's knee.  She orders blood work and an x ray.  So we are off to radiology and then lab.  At 5pm that night we get "the call".  I must admit that until the doctor called I think I was holding my breath.  Her first words were that she was 99% sure they knew what we were dealing with.  Her diagnosis was osteo chondroma.  A benign bone tumor.  She referred us out to a pediatric orthopedic, the same one treating her broken arm.  Turns out it wasn't just an osteo chondroma but multiple osteo chondroma or Multiple Hereditary Exostosis (although the hereditary part mystifies us).  Over her bones my little girl has about 16 of these tumors.  Our biggest concern is over the original one found in her knee, after a MRI it was found to be attached to the growth plate making surgical removal too risky.  There are 6 tumors in her right knee.  The original and biggest is causing her hamstring to "twang" over it every time she moves her knee.  At her last appointment in July I had noticed she was pronating her right foot.  Upon examination it was found that she was indeed pronating, probably to ease the discomfort of the bothered hamstring.   But we are ordering additional x rays of her hips to rule out those tumors causing the pronation.  So here we are 14 months post diagnosis.  She has visited the ortho every 6 months, undergone numerous x rays including a full body set of x rays, and a sedated mri of the right knee.  We shall see if the tumor has slid off the growth plate.  X rays will determine that as well as whether or not the hip tumors are causing rotation of the leg.  Update on Tuesday.