Monday, July 27, 2009
We just got back from the Collins Family reunion in the UP (Upper Peninsula Michigan) . Pat and I met up with Grandma Mema and took the boys around the UP to see some of the amazing sites. We briefly visited several waterfalls and Porcupine Mountains then returned to the bluff to meet up with the rest of the Collins Clan. It nice to see everyone and the kids had so much fun with all their cousins.
And so their journey began...
Bond Falls, Paulding MI
Grandma Eddee (Mema) and Sean over looking Bond Falls
Sean and Andrew getting closer to the falls
After a brief and somewhat dry visit of Bond Falls we made our way up to Porcupine Mountain and Lake in the Clouds.
Then we stopped at a road side beach along Lake Superior (the coldest of Great Lakes) so the boys could really get wet. After they were done playing around in the freezing water and collecting beach stones I couldn't resist taking this pic of Sean in front of the Porcupine MT Wilderness State Park sign.
Me, Sam and Sean at the Summit Peak Over Look. Andrew and Mema went all the way up to the tower but Sam and Sean got really heavy after the first 200+ steps so we figured that the view was just as good from right here!
We noticed the warning sign reading " proceed with caution: steep grades and rapid descending stairs" until after we reached the top again... but I have to give Pat credit for carrying Sam up and down so many flights of stairs so that he could get a peek at the falls and I am so proud of Sam for trying to walk up so many of the stairs on his own.
Posted by rae at 3:29 PM
Thursday, July 16, 2009
Well I officially heard back from all Sam's docs with the test results from Tuesday:
Pulmonology.... chest x-ray shows lung abnormality (which we already knew about). basically his lungs are a weird shape most likely from prematurity... nothing new there... but otherwise look great!
Cardiology... they did an echo under sedation to follow up with Sam's history of pulmonary hypertension. In a word... FABULOUS. No problems to report and everything is well within normal.
Orthotist... the bone scan (amazingly) was completely normal.
So I guess that puts us back at square one. We have no idea why he is limping and gimping around. Maybe he pulled something (which would not show up on any of the tests) or maybe it is just growing pains. Who knows. So... we will continue to watch him for any changes over the next several weeks and follow up with the orthotist the end of August.
Posted by rae at 3:08 PM
Wednesday, July 15, 2009
Thursday, July 9, 2009
Well... for the past few weeks Sam has been playing his lame duck routine. We have not witnessed any trauma, seen any swelling or bruising or found anything disturbing to explain his behavior.
About a year ago we were in a similar situation and after weeks of doctors visits and several x-rays that revealed NOTHING we took Sam to see a specialist and her super duper x-ray revealed new bone growth... ie. Sam had a closed fracture of the head of his metatarsal bone (right where the big toe meets the foot) but it was so fine that it was missed. New bone growth shows up as a brighter white on the x-ray.
Recently Sam has been acting in a similar fashion... gimping around, not wanting to put weight on his left leg (but then will sometimes favor his right also), and there is no sign of any problem. The first round of x-rays were clean but the doc said that if he didn't start walking correctly in the next 5 days we should call her back and she would recommend doing a bone scan (under sedation) to look for any "hot spots". At this time you will find me on my knees praying for a broken bone, a stress fracture, a pulled tendon, arthritis ... since the other alternative is leukemia. Not to be dramatic, but leukemia is very common in kids with Down syndrome and unexplained bone/joint pain can be a symptom... a symptom not to be over looked in a child with Down syndrome. This has been going on for long enough and Sam doesn't have it in him to "fake it".
Sam is non verbal but he has a way of letting us know that something is not right. Usually when he is in pain he scratches and pinches (usually me) and he is rougher than normal with his brothers. For example he will just throw things at their heads or pull their hair while they sleep on the couch or bite the baby's toes while he is defenselessly strapped into his high chair. Fortunately for them, Sam reserves the blunt of his fury for me. Just giving him his breathing treatments is brutal. He just digs his fingernails in and really what can you do? So this "mean" behavior has been going on in tandem with his wounded duck routine. So, something is going on. Sam has an amazing pain tolerance so if he is bothered enough to lash out at me, I know that the average person would be out of their mind and unable to even sit still because of the pain.
That is the other thing... Sam is now signing "pain". This is a new one for him. He knows the PECS (picture exchange) image for pain and will say "Owww" when asked what that picture is but he has never really gotten the sign correct (or really even tried for that matter) and he has never applied it to himself. However, most recently when asked if he has an ow he will sign "pain". He really doesn't give any further direction as to the source of the pain but then again he might not be able too. So once again we are faced with the mystery that is Sam and as always will do our best to figure out the answer.
So next step... bone scan.
full body bone scan scheduled for Tuesday morning
Posted by rae at 11:20 PM