Collins Family Reunion and UP trip

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

another shot of Bond Falls

Sam was trying to get a closer view

Andrew on the rocks

At this point I am pretty positive that we will not leave dry

"Mom... I am only going to get my feet wet..."

family shot

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!

Pat and Sam at the Rainbow Falls over look.

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.

Back at the bluff around the campfire with the cousins

storm coming in over the bluff

Update: Good news, Nothing Wrong... Bad News, Nothing Wrong.

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.

Check us out!

check us out in the latest edition of Chicago Special Parent Magazine

here is the article from the mag... a nice little plug for the poncho project!

It's Not Just About Numbers

Sam Collins arrived into this world weighing less than 2 pounds and accompanied by enough doom and gloom predictions to overflow his hospital bassinet.

Despite eight major surgeries before he was 2, Sam and his parents haven’t let those predictions keep him from passing the milestones doctors warned them never to expect: holding up his head, sitting, breathing without oxygen, walking. Sam has Down syndrome and Infantile Spasms, a life-threatening form of epilepsy. RaeAnn Collins, of Lindenhurst, constantly marvels at how hard her son has had to work to accomplish what others take for granted. And she admits especially loving times when Sam, 6, is naughty: "We hoped and prayed for naughty for so many years."

She and her husband, Patrick, have been in enough hospitals and doctors’ offices to know what other parents experience. Many appointments offered nothing but bad news until Collins one day had enough and insisted doctors say one nice thing, even if it was only to compliment the soft blankets volunteers gave Sam. "He would become a little less of a number," she says.

Now she’s trying to do that for other kids.

Collins uses time spent waiting for Sam’s appointments or during 7-year-old son Andrew’s religious education classes to make soft, colorful ponchos for kids at Advocate Lutheran General Children’s Hospital in Park Ridge. The ponchos cover what hospital gowns won’t and do not interfere with IVs, monitors and tubes.

Each poncho comes with a note: "Hi, friend. My name is Sam, and I spent lots of time in the hospital, too, so my mom made this especially for you."

"This is something I can do and maybe some other parents will know that somebody else is thinking about their kid; they are not just another number in a hospital bed," Collins says.

The idea has caught on. Collins regularly hears from others who want to make ponchos for kids or give her fleece. "You don’t have to have a lot of money or even a fabulous talent to do something nice for someone else," she says.

To receive a Poncho Project kit, contact Collins at rjohncol@comcast.net.

MOM’S WORDS

Best advice ever received: "Don’t handle him with kid gloves all the time. Let him get dirty, let him play in the mud, just like a regular kid would."

The one thing you have learned: "Slow and steady wins the race. It’s kind of like our mantra. Sam will do what Sam’s going to do when Sam wants to do it. He’s going to do it; we just can’t be too impatient."

Your hopes for Sam’s future: "That he will experience as many random acts of kindness as possible, that people will look at what he can do and not what he can’t do, that people will accept him just for Sam and not look at him and pity him."

things that make you go hmmmmm???

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.

***update***

full body bone scan scheduled for Tuesday morning

Wordless Wednesday ...more fun with photo booth