Tuesday, August 23, 2011

A visit to Shriners, and finally a diagnosis

Our long awaited Shriner's appointment was yesterday.  Sam, Tyler, and I went to Spokane and left the other boys with a babysitter.  We can not remember when  or if ever we have both spent that much time alone with Sam.  He is a lot of fun to have on his own.  He was pretty nervous about going to the doctor, so he was a bit silly.

When we pulled into the parking garage, he asked if this is the place where they are going to shine his feet.  It took a minute to figure out that he thought we were going to "Shiners" hospital.  We all laughed and laughed about that.

Sam has had issues with his ankles, feet, and legs since birth.  When he still wasn't walking at 18 months, he ended up going to physical therapy and wearing orthotics until he was 2.  They worked wonders.  Since then, we have noticed that his feet are turning in more and more when he runs, he still sits in a W, and he is not keeping up with other kids his age.  We have been to physical therapists, doctors, surgeons, etc with differing opinions as to what should be done.  They ranged from nothing, orthotics, physical therapy to surgery.  Our pediatrician finally recommended that we go to Shriner's to get the answers once and for all.  I was very nervous, but it is hard watching him struggle to keep up with kids his age, and he is turning in his feet and knees more and more which is bringing comments from outsiders - lovely.

The official diagnosis is femoral antiversion.  The best explanation I found is on the Johns Hopkins website.  Basically, his thighbones are rotated inward which makes his knees knock and toes point in when he walks and runs.  It also explains why he sits in a "W" rather than criss-cross.  The doctor said that it might correct itself, but that in some patients it does not.  They will evaluate him when he is 8 or 9 if it is causing an interruption in his life.  At that point, they can do surgery where the bone is cut, rotated, and set.  We are praying for the auto correction option.  We have to go back in 6 months for a repeat xray of his right foot, because his arch is higher than his left, and they want to make sure that does not change.  He was also diagnosed with loose ligaments which makes his ankles bend all over the place.  He will probably be a clumsy little boy all growing up. 

This does not answer any questions as to why he was delayed in walking as an infant, as it was primarily caused by low core muscle strength which is typically neurological.  She said we could see a neurologist and a geneticist to test for syndromes and such, but that the outcome would not affect the way we treat him moving forward.  Since he is maintaining a normal life, there seems to be no reason to go through extra tests that may never show anything.

For now, the doctor said that the best treatment is to let him be a normal 5 year old.

We are grateful to have some answers, and I feel very blessed that this is not something serious.  Being at Shriner's is a humbling experience.  It makes me re-evaluate challenges in my life and just to be thankful for what I have.

Wednesday, August 3, 2011

Jack's coolest day of his life

Jack just completed a two and half week science camp.  It was something he looked forward to all summer long, and it did not disappoint.  When I picked him up on Monday, he was outside experimenting with all of the gadgets that the Science Bus had to offer.  One of them was a robot named Disco.  He was amazed that Disco knew his name, and commented on his Austin shirt.  He asked Disco if he had ever met R2D2 and said if he ever does to tell him hello.  I only had my phone, so the picture is not that great.

During his time in camp, he made gak, a compass, a weather vain, anemometer, two boats that they raced,  miniature rocket, and regular sized rocket which they launched on the final day.  They also learned about magnets and polarity, and all sorts of chemical reactions.  On the last few days, the Science Bus came with all sorts of cool things to play with, and the robot.  When I picked him up, he said it was probably the coolest day of his whole life.  He wasn't sure which was his favorite, the robot or watching them dip things like hot dogs into liquid nitrogen and throwing them on the ground to watch them shatter.  He was also very excited that his regular size rocket had several successful launches.  He worked very hard on it.  Here are some great quotes from the last few weeks:

(acting like I must be a complete idiot)  It's an anemometer, it measures wind speed. (eyes roll)
According to my calculations...
I am pretty sure I figured out how to change the polarity of a magnet (insert long theory)
I am not a farmer, but I know a thing or two about crops.
It seems like the smartest kids I know are all going to science camp.  (I told him that some of the other kids might not think it would be very fun)  His response:  They are soooo wrong.
His nightly prayers:  Please bless that my rocket will have a successful launch.  Please bless that my rocket cone will not get damaged today.
Mom, I didn't want to give Disco a high-five, because he is made of metal, but I realized that he was just holding his hand up; not hurting people.
Mom, I really want a robot, can we go to Walmart.
Do you think some day, people will have robots in their houses?
I don't think you should stop at Sonic on the way home again today, you stopped drinking coke, but you are still too addicted to sugar.

Amazingly, this was offered by the school district and totally free.  I had to send him with a notebook, an empty two liter bottle, duct tape, cereal box, and some stickers.