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.

Wordless Wednesday ...more fun with photo booth

Bill of Rights for Parents of Kids With Special Needs

This is great! I stole this off Bethany's Blog. I am in good company as I believe there has been a lot of blog-post-thievery surrounding this post. I found myself shouting out a few AMENS and a few THAT'S RIGHT SISTA as I read through this post and I knew that it must carry on. Enjoy!

We, the parents, in order to form a more perfect union, establish justice, insure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.

* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.

* We have a right to trust our instincts about our kids and realize that experts don't always know best.

* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.

* We have a right to choose alternative therapies for our kids.

* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.

* We have a right to wonder “What if…” every so often.

* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun.

* We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout.

* We have a right to react to people’s ignorance in whatever way we feel necessary.

* We have a right to not always have our child be the poster child for his/her disability and some days be just a child.

* We have a right to go through the grieving process and realize we may never quite be "over it."

* We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.

* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.

* We have a right to have yet more Pinot Grigio.

* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.

* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.

* We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”

* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things.

* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the butt.

* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our children’s disabilities.

* We have a right to talk about how great our kids are when people don’t get it.

* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.

* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.

* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.

* We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it."

* We have a right to wish that sometimes things could be easier.

* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.

* We have a right to push, push and push some more to make sure our children are treated fairly by the world.

(Compiled by Ellen, in honor of her little boy, Max, and all of our beautiful children, on June 17, 2009.)

The Mommy Special

Well... yesterday was haircut day. AKA... the day that I pull out the clippers and just do the best that I can with time that I get. There is not telling on any given day how long one of my boys will sit still (with some restraint of course). Sometimes it is painfully obvious that they did not get their current haircut at the local barber shop or even at a super cuts... no... there are times that their new look screams "Mommy Special" and everyone just gives you that nod... you know... that nod that says "yea... I tried to cut my kid's hair too... thank goodness it is not picture day..."

Well thankfully yesterday was pretty uneventful as far as a haircut day goes. I was really worried about cutting Sean's curly blonde locks but he did pretty good. All in all I think their hair looks pretty good... Mommy Special or not they are acceptable for public appearances. Below are a few before and after pics...

FYI... Andrew got his hair cut "professionally" about a week ago and was spared the Mommy Special haircut this time around.

BEFORE

AFTER

AFTER

Wordless Wednesday on Photo Booth

Thank God for insurance!

Last night I drove through the pharmacy to pick up Sam's latest prescription... TOBI.  The pharmacist chatted with me for awhile and then he said "Thank goodness you have good insurance coverage on this...... your insurance saved you $4335.39!"  OMG!!! At $4000.00 + per month this stuff had better work.  Besides our regular co-pay we had to get a special nebulizer attachment (not covered by insurance) but all considering insurance saved us a bundle!!! seriously!

TOBI... short for Tobramycin (TOE-bra-MYE-sin).  TOBI is an inhaled antibiotic used to treat certain infections caused by Pseudomonas bacteria.  Typically this medication is used by Cystic Fibrosis patients.  Sam does not have CF, however like many CF patients he seems to be plagued by Pseudomonas infections.  TOBI is administered via a special nebulizer, 2 times a day for 28 days on... then 28 days off.... then 28 days on (you get the picture). Each treatment takes about 15 minutes and Sam, no stranger to nebulizer treatments, seems to tolerate them pretty good so far.  

After one oral (g-tube actually) antibiotic after another with so-so luck at keeping infections at bay, his pulmonologist thought TOBI might do the trick.  I have high hopes that since this medication is inhaled, rather than ingested, it might not have the same negative effect that other antibiotics have on his bottom.  Sam still has horrible diaper rashes due to Hirschsprung's disease and having basically no large intestine so maybe since TOBI does not go through his system the same way maybe his sore bum will be spared.  

  

ISCU Reunion

Today we went to the annual ISCU Reunion (Infant Special Care Unit).  It is hard to believe that Sam was once so tiny and fragile.  He was born weighing 2 lb 5 oz and 14 inches long.... below is a pic of Sam being held by his nurse Diane when he was about 1 month old.  You can see that he had not yet graduated to an open crib and for a size reference... the probe that is wrapped around his foot (pulse-ox monitor) now fits on his big toe.  You've come a long way baby!

 

Here is Sam, once again being lovingly held by his nurse Diane.  She cared for Sam for his first 3 months while he learned to grow, eat and breath in the ISCU.  Diane is amazing and we owe her so much for all the love and care she gave to our family.  6 years later Sam is now 50 pounds and 45 inches tall.  

Another familiar face.  Dr. Juda Jona operated on Sam when he was just 11 days old and weighed less than 2 pounds.  Dr. Jona's skilled hands have operated on Sam many times.  Dr. Jona told us today that he is moving to Michigan... we are sad to see him go but we are ever thankful for all that he has done for Sam.