A Brand New Day

I am so very excited to announce that today is the first day Sam rode to school on the bus WITHOUT his wheelchair.  

This day has been 5 years in the making... and I know you have heard me say a million times...

"slow and steady wins the race" 

and 

"everything is possible... 

the impossible just takes a little longer" 

I have screamed these words through laughter and tears.  I have spoke them time and time again to encourage others and more often times than not to encourage myself.  I have mumbled them under my breath knowing that others thought I was insane to hope for so much.  But today, with an over-flowing heart, I tell you again that I believe in the truth and the power of these words.  I am humbled by the miracles that I have witnessed first hand in the form of a chromosomally-enchanced little wonder boy... and I know that we absolutely are blessed and lucky!    

Well today I stand before you to share yet another long distance race won by none other than Mr. Naughty himself! He is living proof that everything is possible! 

*insert happy dance here*

Words cannot express my excitement!  So here are some pics of this momentous occasion.  

 getting fitted for his new harness... and you can't see well but he actually stood on one foot while he lifted his leg to step into the harness.... OMG can you believe it!!!!!

 His first step onto the bus!

 Lovin' his new seat on the bus!

Of course he had to get some flirting in...

 Now that is one happy boy!!!

"Sam's Bus"... even has his name right over the door!

"That Family" rides again!

So last fall at a silent auction Patrick and I won this ... a bike trailer from WeeHoo!  Love it!

So with all Irish Eyes a smilin', we strapped on our protective head gear (some of us looking more fashionable than others) and prepared to head out on the first of many family bike rides of the year.  

So this is how we roll....

Andrew road his own bike.  After much pleading to ride his own little bike, Sean was stuffed into the seat carrier behind Pat's bike.  We hope that soon he will be able to accompany us on the tag-a-long but for now his legs are not long enough.  And Sam, the prince that he is, road in the WeeHoo chariot.  This schnazzy little ensemble was attached to the back of my bike.  So with everyone saddled up and headed out on our excursion.  

For starters, it was a beautiful day and none of us needed coats... just light sweatshirts!  So off we go.  And from the beginning Sam and I brought up the rear.  I had my bike gears set on "granny" which meant that I was pedaling about 180 rotations to the rest of the family's 8.  I played with the gears a bit but basically there was no coasting for me if I wanted to maintain any sort of forward momentum.  So I chalked this up to my daily workout and powered through the marginal inclines that started to make me pant.

A block into our ride we hit the forrest preserve and the diamond dust trails.  They are well groomed but soft-wet-diamond dust is no biker's friend.  I can see the rest of my family in the distance.  Sam is behind me giggling.  I hit the trails at a pretty decent speed only to have all my momentum absorbed into the trail.  Again I am thinking "work out"... eat my dust Jillian Michaels!  At this point I adjust my gears for more power and try to regain my momentum to make it up the looming hill in front of me.  Typically this long slow hill is not an issue but when you are towing a 50lbs+ boy on a recumbent bike who is pedaling backwards... well there is no "granny" gear that can save you now.  But although I am not a "fitness badass" (...yet), I figure that I am in decent enough shape, I have lots of gears, and I ate my Wheaties this morning (well not really but you know what I mean).

I am literally huffing at this point.  We are 2 blocks from our house and I have pedaled over 5,000 rotations (I am pretty sure), my cheeks are hot and flushed and I fear that at any moment we will start rolling backwards.  Sam is still giggling.  I end up having to bail and walk the bike, with Sam in tow, up over the crest of the soggy hill.  At this point I am willing to concede that I was wrong to argue with my doctor that "no, I don't have activity induced asthma... it is just allergies".  My eyes are watering, I just hacked up something unmentionable and Sam is now giggling even harder and fake sneezing trying to mimic me.  

I can't see Andrew, Pat and Sean any longer... but I can hear Andrew up ahead calling to Pat to wait up... "DAD... WE HAVE A MAN DOWN... MAN DOWN".  I am trying to smile through the drool to  all our neighbors who were also out on the path enjoying the beautiful evening.  I think I scared a few kids... 

Now at the top of the hill I re-mount my bike and attempt to catch up with the rest of my family.  Note to self: It is literally impossible to start out pedaling in a granny gear with a tag-a-long bike in tow.  At this point Sam has learned that it is fun to rock from side to side and his rocking momentum makes it difficult to steer straight (to all my neighbors who are trying to plant grass or flowers along the path... I am sorry).  He has also learned that although pedaling forward "helps Mom", pedaling backwards makes Mom grunt and can affect the speed.  Lesson learned: pedaling backwards is not only easier... it is more fun!  

So we now have emerged from the forrest preserve and now the trail is paved (oh Thank you Lord).  Sam is still pedaling backwards.  I have caught up to my boys and Patrick, riding along beside us, is trying to coax Sam into pedaling forward.  Nope.  Backwards is more fun.  So I am back in "granny" gear pedaling my heart out just to keep us in a forward motion.  There is one final BIG hill and I almost made it to the top... but Sam was really "helping"  at this point.  Half of me is thrilled that he is at least pedaling and not just resting but the other half of me is ready to get on the lung donor list.  I admit defeat and walk up the last few feet.  I am slightly embarrassed at my present condition and wondering how many "bad mommy" points I would get from taking a drag from Sam's inhaler.  **it's not asthma, it's not asthma, it's not.... gasp. hack. gasp.**

The air is a bit chilled and it burns with every breath.  More unmentionables are expelled.  I also now realize that Sam has been "working" really hard on something too and there will be a tailwind the rest of the way home.  sigh.

Again I catch up with the rest of my family... they smell us coming.  Once again Pat tries tries to make pedaling forward look really fun to Sam.  Although pedaling back-wards does not halt things altogether, it does seem to add a bit of drag... alas... a better work out for me.  I think Jillian Michaels would consider a bike workout that entailed towing a 50 + pound child pedaling backwards uphill the "crazy persons" version of a bike workout.

So home again, home again!  I feel like I have an elephant on my chest and I think I am still drooling.  Otherwise I feel great.  We release Sam and Sean and they both start running in different directions... it is then I realize that my legs have been replaced with wet egg noodles.  Patrick cannot understand my distress.  Does he not realize that not only did I not coast at all during our excursion but I actually pedaled the equivalent of 60 miles farther than he did?  Of course not...LOL.  But it was a great first ride with hopefully many more to come!  

Sh!$ Happens

I have taken a bit of a blogging hiatus and although I have composed numerous posts, none have made it past the draft phase, fragments of some have appeared on facebook and countless others have never actually made it past my frontal lobe.  My brief break is not due to a lack of blog worthy material but rather and issue of time management... or rather lack of time to sit at my computer without having to address the urgent 911 call for chocolate milk or kiss the exponentially growing lump on someone's forehead caused by direct contact with a wii remote or .... what is that smell????  Poop trumps everything.  And you guessed it boys and girls... poop is the topic of this post.  So for those of you with more sensitive constitutions or olfactory senses... this is your spoiler alert... you have the option to bail now... Shit happens and I am gonna tell you all about it!!! 

23-19... 23-19

Taken from the movie Monster's Inc. as code for human contamination in the monster world... Patrick and I use the distress call  23-19 to alert each other that the diaper has failed and its contents are no longer contained.  With 2 still in diapers this code serves as a silent (if not deadly) alarm, a call into action so to speak... a "hurry the hell up, I need help NOW" message that when broadcast it requires immediate action.  

For example... 

When we are at the pool... 23-19 means "quietly and quickly gather the kids... we are leaving NOW!".  

When in a store... "don't ask questions... leave the cart... find a pair of pants that will fit... and meet me in the parking lot"

When at school... "Who's pants are these?  23-19... please wash and send loaner pair back for next time."

When at the park... "OK... is he your kid or my kid this time?"

When at home... "Honey... I think Daddy is calling you!"  (snicker, snicker)

But in all seriousness... We all know that someday our children will be potty trained and we will one day look back on these days and laugh.  We all will do (or have done) the "happy ... no more diapers dance" and although we are a wee bit sad to see our babies grow up we are thrilled to not have to be dealing with diapers any more.

Well... not all of us are so certain.  

Sam, among other things, has a condition called Hirschsprung's Disease,  long segment Hirschsprung's disease to be exact.  To put this simply... Hirschsprung's disease, or HD,  is a condition where the ganglion cells or nerve cells don't grow all the way to the end of the bowel.  Without any nerve cells there is no way for the body to detect that waste is present and to then push it out.  HD may effect a very small segment of intestine/bowel (an inch or two), or may effect much more or even all of it.  Most of the time this condition is recognized shortly after birth.  After a diagnosis is made, the process to correct this condition consists of a 2-part surgery and often times there are other interventions needed.  The first step is a biopsy to determine how much of the bowel has been affected.  Then a colostomy is placed to allow for the removal of waste... then the pull-thru procedure (a surgery that removes the effected intestine/bowel and reconnects the working parts to the rectum).  It is a long process but in the end... most kids do very well with few problems.

HD is more common in boys and even more common in children with Down syndrome (2 strikes for Sam).  Sam got his colostomy when he was 13 days old, weighing less than 2 pounds, on Christmas Eve 2002.  Due to the risk of contamination, he underwent the pull-thru procedure at 6 months of age, 6 weeks before his open-heart surgery (there would have only been a few inches separating where he pooped from where they opened his chest to fix his heart).  During the pull-thru surgery,  the surgeon discovered that not only was Sam's HD much more extensive than previously thought but that he also had Malrotation.  Basically, his intestines didn't coil correctly and were all flipped around backwards.  Typically your appendix is in your lower right abdomen... Sam's appendix was in his upper left side.  In the end the appendix and everything down from there was removed, leaving Sam with less than 1/5th of his large intestine.  

Sooooo .... What do you get when you combine no large intestine and low tone???  You get poop!  Lots of poop!  Lots of watery, loose, frequent poop!  Poop, poop, poop, stinky, smelly poop!  We were told, oh so many moons ago, that even if Sam had no other medical issues that, considering the amount of large intestine that was removed that he may be close to 12 before he could have enough control to be potty trained.  12... seriously??? I was crushed at the reality of this.   It is pretty common for kids with Down syndrome to potty train a bit later than their typically developing peers but I was crushed to think that my child would be in diapers until he was 12... Well Sam is now 8 and right now 12 is looking pretty good.  I have resolved myself to the fact that he may always need a diaper, but that doesn't make me any less hopeful.  "Everything is possible... the impossible just takes a little longer!"  Sam has surprised us enough already that I cannot even begin to put limits on his capabilities.  I prepare myself for the worst but hope for the best.  And honestly if I had only known then what I know now I would not have shed any tears... shit happens.  

First things first.  We are not even thinking about potty training Sam right now... he is no where near ready.  Sean on the other hand is sooooo very ready but he is playing the game... and I am trying to be patient (Oh Lord, Grant me patience to deal with my blessings).  He actually played the "Sam wears diapers so I can wear diapers" card the other day... really kid?  Sam on the other hand needs to have more solid stools first.  Right now his poop, on a good day, is about the consistency of applesauce or maybe toothpaste.  And *news flash* boys and girls... pull ups don't hold poop!!!  Sam wears a diaper that we have to special order ( Molicare Air Actives ), but it has the holding power required to reduce the frantic 23-19 calls.  To complicate things even more... Sam is still 100% g-tube fed... and I am thinking that an all-liquid diet does not help our plight.   We are working towards oral feeding also but after his his heroic battle with Infantile Spasms/West Syndrome (a severe form of epilepsy) Sam has been unable to coordinate the suck, swallow, and breath responses needed to eat safely via his mouth.  That too will come with time but I diverge... today we are talking about POOP!

Recently we started adding pectin (yes the same stuff you use to make jelly) and loperamide (immodium AD) to his daily regimen with the intent of thickening his poop and slowing down the rate at which waste moves through his remaining bit of large intestine in hopes of creating a more solid "product".  Slowly, oh so very slowly we have seen his poop get thick  and thicker.  We are now looking at a consistency somewhere closer to oatmeal or peanut butter.  You see the goal here is to achieve solid poop!  You can't successfully potty train until you have solid poop.  Solid poop is an indication that your child can "hold it" and that there was conscious effort to void the waste... it didn't just "slip" out.  It is a sign that the body has been able to absorb some of the excess fluid (typically a job done by the large intestine... remember that Sam has less than 1/5th of what the rest of us have).  

So although we are moving in the right direction... Sam is also scared to death of sitting on the toilet.  I have never seen fear in that child's eyes like I have when he has been place upon the toilet.  He has endured numerous surgeries, several invasive and painful procedures and yet he is afraid to sit on the toilet.  Alas... no one said it would be easy and once again I fall back on my mantra... "slow and steady wins the race"

Sam has been home sick all week which only punctuates the negative thoughts that slip into my mind from time to time when I allow myself to think about the years and years of diapers changes that inevitably are an intrinsic part of my future.  And although potty training Sam is a lofty goal, there are other things that I want so much more for him.  For instance, better communication skills and just the basic ability to tell me that he wants his diaper changed... seriously, that would be more precious to me than gold (gold nuggets that is...LOL).  So with 2 still in diapers, my salvation these days comes in the form of a little Scentsy warmer and lots and lots of wonderfully scented bricks.  My house smells of spiced grapefruit and cucumber lime... instead of... well... you know.

Please excuse the fact that there are no pictures with this post... considering the subject matter I am sure you understand  :)

Merry Christmas and Happy New Year... better late than never!

Failed attempts at taking the 2010 Christmas picture...

yes, Sam is asleep

then all hell breaks loose

seriously... I just need one picture... without weapons.  Is that too much to ask?

and the keeper...

Merry Christmas and Happy New Year 

We hope this holiday greeting finds you all happy, healthy and enjoying the holiday season. This year, I implored my boys (officially renamed Button Pusher, Naughty, Instigator and Enabler) to help me write the Family Christmas letter.  

They are all very good at supplying me with plenty of material...even that being the case you will notice the new slimmer version of our 2010 re-cap.  In the past, condensing our year into a Reader’s Digest version of our lives has 

meant stretching the margins to their breaking point, using a ridiculously small font and printing on both sides the paper.  So in an attempt to cram it all in, some may cite my writing style as an example of horror vacui  (go on...Google 

it...you know you want to).  However, now with everyone (except Patrick) on Facebook or blogging, it has become increasingly easier to keep up throughout the year... somewhat negating the need for an epic Christmas letter.  So in 

the spirit of all good and enjoyable, I bring you the abridged version of what was previously known as the OMG... It’s 2 Pages...Collins Family Christmas Letter.       

Button Pusher is now 9 and in 3rd grade.  Between soccer, Tae Kwan Do, religious education classes, cub scouts and everything else that comes with being an incredibly curious kid, Andrew is just growing up so fast... right before our 

eyes.  Recently Andrew asked me...“Mom, when you were pregnant with me did you have a cat?”  ME: “Yes.”   ANDREW: “And did that cat sleep on your stomach when you were pregnant with me?” ME: “Yes.” ANDREW: “Ahhh...so that must be where I get my cat-like reflexes.” (And he was completely serious!)  ROFL... I love the way this kid thinks...LOL.  And as for his contribution to this letter, I asked him to tell me what he was thankful for and his response was... “Life. Home. Liberty. Justice. World... and that is it Moooooom!”  Seriously, you can’t just make this stuff up.   

Mr. Naughty is now 8 and in 2nd grade.  He attends a special school and he loves going everyday.  His amazing medical team and incredible educational team have helped us keep him healthy, progressing and doing all naughty things a little boy should.  He has a promising career as a movie critic as he moonlights as an escape artist.  Mr. Naughty never ceases to amaze and constantly reminds us that everything is possible... the impossible just takes a little longer.  Just 

when you think you are ahead of the learning curve, Sam will rock your world and dare you to keep up with him.  Sam helped with the Christmas letter too... he deleted it off my computer... twice! So in his own way,  Sam is forcing me to 

learn more about computer science and recovering lost files than I would have learned on my own.  That’s our Sam... pushing us all to be better.  

The Instigator is 3.  Three is an amazingly insightful age that makes you ponder the brilliance of duct-taping your child to the couch (or any stationary object for that matter) and while you ponder that idea and kick yourself for not realizing 

the sheer genius of it sooner... your child orders 28 apps on your iphone. Yes, I said 28! When I asked Sean what his favorite things are... he said... “I like cars and cars racers (Wii Mario Cart) and speed racers... for all my life!”  Yup... that 

about sums it up.  He is a master at accessing the streaming videos on Netflix via the Wii and as a result Sean knows more about animal rescues; the antics of a whinny, bald, five year old and the life of a Phylum Porifera living in a 

pineapple under the sea than any sane parent would be proud to admit to.  It’s when you get caught humming an obnoxious theme song while folding the laundry that you too will know my pain (2 bonus points if you added gestures or 

facial expressions).  And just incase you currently don’t have a song stuck in your head... “Hotdog. Hotdog. Hot-Diggity Dog...” Only a Mouseketool can save you now! 

When asked for his help with the Christmas letter... Patrick, now answering to Enabler, contributed an eye-roll and  an are-you-serious??? look.  Do you feel the love streaming to you through this letter?  Go ahead... sit back and soak it 

all in.  Please know that he put a lot of thought and effort into this and he truly desires to share all his warm and fuzzy Holiday wishes with all of you.  And in doing so his heart grew three sizes this day! 

I wish that I could report that I won the lottery or solved the energy crisis or discovered a way to get more than 6 hours of sleep each night... I guess these things will just have to be added to my 2011 to-do list.  In the mean time I 

am nearly finished with my 2009 to-do list!  Whooo hoooo! 

This Christmas season we remember all our loved ones who are not with us and we send up a special holiday wish to our guardian angels, thankful for their protection.  So now it is time to wrap things up...so with much love in our 

hearts we wish you the warmest blessings as you ring in the New Year.     

Warmly and with much love... Patrick, RaeAnn, Andrew, Sam & Sean (Cooper and Kitty 2 too) 

I'll take a Guanfacine Mocha Latte to go please

On Tuesday we saw Sam's neurologist.  Dr. Shah has been a beacon for us during Sam's dark Infantile Spasm storm and has thrown us more than one life jacket.  He is calm and compassionate and he truly understands what an incredible gift we have been given in Sam's seizure-free status and his progress.  Sam's delays are significant but he knows how hard Sam has had to work to be where he is today.  I joke that Sam has worked so very hard to be THIS delayed... and we are so very proud of him.  Slow and steady wins the race.  Dr. Shah knows that everything that Sam is capable of is icing on the cake... his initial prognosis was grim at best and he told us to prepare for the worst but pray for the best.  And Sam did get the best outcome.  Although is delays are considered moderate to severe now, when he was first diagnosed with IS we were told that being able to maintain eye contact for a 3-4 seconds would be a difficult goal.

Sam is now nearly 8 years old and has been seizure free for almost 7 years and free of HYPS for 6 years and off all seizure meds for 5 years.  AMAZING!!!  Sam is now walking, running, jumping, climbing stairs, matching pictures, making meaningful choices, had definitely likes and dislikes, is naughty, rides a bike and many more things that we never dared hope for him to be able to do.  And many people are completely clueless to how incredible Sam's IS success story is... and how rare.  He truly is Blessed and Lucky.

However, IS has taken a toll.  Sam's brain, in a sense, has had to re-wire itself and find new pathways to send messages.  So for Sam to get from A to B... he must go from A to Z to Q to B.  It is the long way around and sometimes he gets there and sometimes he gets lost along the way.   Unfortunately for Sam, he sometimes gets distracted somewhere between Z and Q.  He has been having some issues at school and sometimes he hits or exhibits other poor choices.... impulsiveness,  lack of focus.  This is nothing new but it is often difficult to assess what is a "problem" and what is developmentally appropriate naughty little boy.

So after much discussion and hand wringing and contemplation, we a started Sam on Guanfacine (or Tenex)

Guanfacine (Tenex) was originally developed as, and is still used as, a mild antihypertensive. Like some other antihypertensive drugs, Guanfacine (Tenex) regulates levels of the neurotransmitter norepinephrine; in the prefrontal cortex of the brain, it decreases sensitivity to distracting stimuli, and it therefore may help with focus. For this reason, it can be helpful in reducing ADHD symptoms, either alone or in combination with stimulants.

I have mixed feelings about this.  This topic has been discussed and brought up a lot over the past several years... a topic that has never left a good taste in my mouth but one that I knew I would one day have to swallow. On one hand I feel that Infantile Spasms (not to mention everything else) has robbed Sam of so much and if this will help him make those connections faster and help him to be less frustrated and more focused... fabulous.  On the other hand I hate adding another med to Sam's daily routine.  On the upside... the side effects are very minimal (virtually none) so there really is no down side in trying.  Sam is on the cusp of really grasping so many new things and I can't help but wonder... if he had just a wee bit of help could he finally complete some of those loose connections in in brain and unlock a few more doors???

Am I wrong to ask for more?  Considering the gift we have already been given... is it wrong for me to say "Thank you God for the miracle... now may I have another?"  Is it too much for me to hope for that one day Sam might learn to read, or be potty trained, or have a conversation with me about the weather ???  Am I selfish for wanting more than I was ever promised?

Look at those faces and tell me that I am wrong for wanting so much for them.

So we will see how it goes....   

and then there were TWO!!!!

Please follow the link to my friend  Leah's blog... she is doing something amazing and changing lives forever.  Pop over and read her story and become part of her family's journey by helping Leah and her family bring these two very special children, Axel and Ianna,  home to their forever family (and you could win an iPad).  

I will take "Yummy things from Rae's kitchen for $200" please.

And the answer is... Seriously the best meatloaf recipe ever!

Rae's Fabulously Delicious Meatloaf

Combine at least 2 of the following meats to = 3lbs (ground turkey, lean ground beef, ground venison, jimmy dean sausage (any variety))

*** my favorite combo is 2lbs lean ground beef and 1lb jimmy dean sausage (sage, low-fat, spicy... you choose)

1 cup tomato ketchup (have used salsa in a pinch)

2/3 cup V8 juice (can you spicy if you choose)

4 eggs

1 1/2- 1 3/4 cup bread crumbs (ok to add a bit more if mixture seems a bit to "wet")

4 tsp prepared mustard

1 packet Good Seasons Italian dressing mix *dry mix

Mix everything thoroughly in a large mixing bowl.  Seriously, I am pretty sure that you are supposed to beat the eggs first and add all the ingredients slowly... but I just toss them all in and in no particular order and use my hands to mix it all together.  Turns out great every time.

Press meat mixture into 2 loaf pans (yes... that is one for dinner and one for sandwiches tomorrow!)  

Topping (optional)

mix 1/2 cup ketchup OR chunky salsa

1 tsp prepared mustard

4 TBS brown sugar

Mix it all together and spread on top of meat loaf.

Bake at 400 degrees for about 1 hour (check at about 45-50 minutes and drain if needed... my oven sucks so please note that your cooking times may vary... I usually end up cooking it for about 1 hour 10 minutes or so).  The meatloaf will start to pull away from the sides.  The sides and the topping will probably look a bit burnt... but it is not... it is just the sugar carmelizing... YUM!  Drain as needed and let rest for about 5 minutes before serving.  

enjoy :)