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 :)

Other yummy things I might feed you if you came by my house for dinner

You may have noticed that I have been in a domestic mood lately.  Don't worry... my house is still a mess but it smells really good from all the baking.  A girl has to prioritize!

**SPOILER ALERT... legume haters... just stop reading now... nothing beyond this point will be of any interest to you.

So on the menu for tonight was Apple Bean Bake, pork chops and corn bread.  Now I will admit that is is not one of the boys favorites (I don't know... something about beans and gagging and how if Aunt Tammy doesn't have to eat beans...LOL) ... but seriously, I did catch Sean up on the table licking Pat's plate while we were cleaning up the dishes.  Sometimes I wonder about that boy.

So in keeping with my simple and easy theme... this dinner ranks 2 on the difficulty scale (10 being difficult and something I would probably never attempt anyway) and an 11 on the yummy scale.

Apple Bean Bake (please keep in mind that I usually double this recipe)

48oz jar Randall's Great Northern Beans... drained

4 tbs butter

3 cups tart cooking apples (peeled/cut)... I have one of those apple peeler/corer things and that works great.  It slices the apples very thin and then I cut them into bite size pieces. and I tend to be pretty generous with the apples too.

3/4 cup light brown sugar

1/2 cup ketchup

1 tsp cinnamon (or nutmeg... or both)

salt to taste (it does not need the salt in my opinion)

melt butter in a large skillet.  add apples and cook for about 10 minutes until apples are tender.  stir in everything else.  brown sugar should be dissolved and everything well mixed.  put drained beans in a 2 quart casserole baker and pour apple mixture over the beans and mix well.  bake in pre-heated oven at 375 for 1 hour.

My cornbread of choice is the .46 cent box of Jiffy cornbread mix in the little blue and white box.  I use 2 boxes and make johnny cake.  The pork chops can be grilled or baked or fixed however you like.  

I love this apple bean bake recipe even better the next day.  That is the reason I usually double the recipe to ensure there are lots of left overs :)

It's the Great Pumpkin (puree that is)

Pumpkins, pumpkins everywhere!  

So we started out the morning with Pumpkin French toast... devoured!  Bacon was a side note but nearly ignored in the shadow of Pumpkin French toast with warm homemade liquid gold (maple syrup).  Now this is another ridiculously simple recipe that has lots of bang for the buck.  

Yummy Pumpkin French Toast

beat together:

6 eggs

1/4 cup pumpkin puree... ok to use a bit more if desired (right from the can)

1 TBS vanilla

1 tsp nutmeg (or cinnamon, cloves or pumpkin pie spice)

* note... no milk is used in this recipe... crazy I know!

Dip bread into mixture and place onto skillet/pan.  Brown both sides and serve! 

Then since I already had an opened can of pumpkin puree... I just had to do something with it... and cheers for Pumpkin Bread erupted from the crowd!!!

This is another yummy recipe that my kids devour.  And note that I substitute applesauce for the oil which gives it a great flavor and significantly cuts down on the fat.  And as always, I am pretty positive that there is a right way and a wrong way to add ingredients.  I am almost certain that there are some things that are supposed to be mixed together in a separate container and then added slowly with care.  Well, that is not how I roll!  I am here to tell you that I just dump it all in a bowl in no particular order, turn my mixer on high and in the end it all turns out great!  

Yummy Pumpkin Bread

mix together:

3 cups flour

2 cups sugar

1 tsp. cinnamon

1/2 tsp. cloves

1 tsp. nutmeg

1 tsp. baking powder

1/2 tsp. baking soda

1/2 tsp. salt

1 cup applesauce

3 eggs

2 cups pumpkin puree (from the can)

1 TSP vanilla

(optional... 1 cup chopped pecans)... note that I NEVER add the nuts but have been known to add craisins or raisins or nothing at all

Lightly spray 2 loaf pans with non-stick spray then dust the pans with sugar (yes use sugar... not flour!  The bread will come out easily and make a sweet crust).  Split batter between the two pans.  Bake at 350 degrees for 60-75 minutes or until toothpick comes out clean (or knife or fork or whatever you poke it with to determine doneness).  Cool completely before removing bread from pans.  Enjoy!

faith, hope and a little bit of pixie dust...

I can hardly believe that a year ago this week we were on Sam's Make-A-Wish trip.  And since then we have gone to Six Flags and Noah's Arc Waterpark on our Give Kids the World Passports... our passports expire this week but I am awed by the generosity of all the organization who participate in the program. 

With a little faith, hope and bit of pixie dust we are making plans to visit Disney and volunteer at Give Kids the World in the future (what better place to celebrate your 40th)!!!  The kids still get excited every time they see anything Disney related.  Sean loves "The Mouse" and Sam still loves his princesses and Andrew is trying hard to grow enough so he can ride on the "really big rides".  

This was an incredible experience that our family will never forget.  

What do you see?

There is so much more to this picture than meets the eye... what do you see?

I just love this pic of Sam coming down the big slide.  What I like even more is that he climbed up there all my himself.  AND... he didn't crawl... he stood up, used the hand rail (safety first!) and one by one climbed the steps to the slide.  This is a HUGE accomplishment that Sam has worked on for a very, very long time.  Then of course he had to figure out how to position himself just right so he could balance and then push off.  And finally he got off the slide on his own and then did it all again.  And if you look very very closely you will also notice that he is just wearing sandals (stylish keens to be exact) without his braces (SMOs) on.  You've come a long way baby!  Slow and steady wins the race.  

So while some of you might just see the joy of a little boy going down the slide on a beautiful fall day... I see so much more.  I see all my therapy dollars at work!  I see motor planning and balance and physical strength and desire and and a good healthy happy heart and good lungs most of all I see a little boy who is able to do what other little boys on the playground are doing.  There is so much going on in this picture... and I hope you find it as beautiful  and as inspiring as I do.  

TOBI is in the house!

Well we are coming up on nearly 2 years without any hospitalizations!!!  Can I get a "WHOOOO HOOOO"!!!!!!   Now I am not so naive to think that we have put all the midnight runs to the ER and mounds of paper work and sleepless nights on those awful hospital recliners are behind us but I do have to say that our little hiatus has been really nice.  Slow and steady wins the race!

Some of you may remember the days when we spent more time at the hospital than we did at home.  When it required a pack mule to haul all Sam's medical equipment from one place to another.  Well we are traveling much lighter these days and Sam's health has never been better.  

In the past Sam was hospitalized with horrendous sinus infections.  Sam would stop breathing and turn gray... it was vary scary and no one could figure out why. After a battery of tests the docs felt it best to do an MRI to look for brain tumors or bleeds on his brain stem because they had ruled out everything else... or so they thought.  After we got the MRI's back you have never seen a happier mom who got the "your child has mastoiditis and a severe sinus infection" diagnosis.  Believe me, as serious as it was, I would gladly take a sinus infection over a brain tumor any day!  With Sam's extensive medical history, whenever we hear hoof beats everyone wants to look for zebras (something rare)... but in this case it was just a horse (something common)!  

Since then Sam has been on antibiotics EVERYDAY... but that didn't solve the problem completely.  About a year and half ago his pulmonologist (I love this man... Dr. Gabriel Aljadeff, Director of Peds. Pulmonology at Lutheran General Hospital) suggested we put Sam on TOBI (inhaled Tobramycin). TOBI is an inhaled antibiotic administered via a nebulizer.  Sam takes a dose of TOBI 2 x a day for 28 days and then he is off it for 28 days before starting another round.  This medication is typically prescribed for people who have Cystic Fibrosis or chronic issues with the pseudomonas bacteria.  TOBI is VERY expensive and because Sam does not have CF we had to jump through some hoops to prove his pseudomonas connection, but his near death experiences with horrible sinus infections was enough for our insurance company to agree to it.  So when I get my "your insurance company saved you $4,355.00" sticker every other month on Sam's TOBI medication I say a little thank you.  

Right now I can hear the fuzzy hum of Sam's nebulizer machine behind me.  

I truly believe that it is the TOBI that has kept all the bad infections at bay,  kept him healthy and out of the hospital and has reduced Sam's need for IV antibiotics.  And not only have his sinus infections, or at least the ones requiring hospitalizations, nearly disappeared but his ears have not had the fluid build up that he has had in the past.  His ENT is thrilled with the way things look "in there".   AND because TOBI is inhaled it gives his sensitive GI track (or what is left of it) a break from having to ingest 2-4 antibiotics at a time. And because Sam had nearly his entire large intestine removed due to  Hirschsprung's Disease  anytime you can cut back anything that messes with what little natural intestinal flora he has is a good thing!  So systematically TOBI has improved Sam's health in a number of areas and we couldn't be happier. 

there's a chill in the air...

ahhh it is that time of year again... the geese start gathering in impressive numbers in the pond behind our house, the spiders are spinning webs like crazy all over the deck (note to self... avoid the deck), my allergies are horrendous and I don't have to argue much with the boys to put on a light jacket before they head out to the bus.  

This also marks the beginning of my baking season.  Believe me, Martha Steward does not quake one little bit in her shoes when I fire up my oven but I will say that my neighbors appreciate my efforts.  I will let you in a on a little secret... do enjoy devouring home baked goods as much as the next girl but even more I enjoy a warm toasty house and the amazing smell that you can only get from backing goodies in the oven.  I will admit that because my husband likes to keep the thermostat at 68 degrees (a bit too chilly for me) I bake to sustain the level of warmth in my house that I desire.  So although he might complain if he sees that I jacked the temp up and somehow he will manage to slip into nearly every conversation that he just cannot understand why the heating bill was sooooo high this month... he NEVER complains when he comes home to a new freshly baked delight.  So this girl just knows how to play the game and in the end everyone is happy!  Com'on... bakers KNEED love too!!! 

The 2 loaves of banana bread that I made yesterday were devoured in record time... the Oatmeal Cranberry white chocolate cookies... well it is as if they never existed.  So thinking a little bit ahead I started pulling out the recipes for some of my holiday favorites.  Now although I think it is entirely too early to whip up a batch (or 2 or 3) of these gems but I thought I would share the recipe with you all the same.  These are one of my all time favorite Christmas cookies and therefor I refuse to make them until after Thanksgiving.  

So here goes... My Mitten Cookies (mittens because I use a mitten cookie cutter but you can make them any shape you want) BTW this is seriously the simplest recipe ever!!! enjoy.

Mitten Cookies

Cream together:

1 cup butter

2/3 cup sugar

Beat in:

1 egg

Add:

1 tsp vanilla

2 1/2 cups flour

Mix together until ingredients are well blended, Chill dough 3-4 hours before rolling.  Pre heat oven to 350 degrees.  Roll out and cut.  Bake 8-10 minutes or until barely colored.  Cookies can be frosted and decorated with sprinkles, edible glitters, colored sugars or just eaten plain.

Frosting:  

3/4 cup confectioners sugar

1 TB butter

1 TB milk

1/2 tsp vanilla

1/4 tsp lemon juice

a few drops of food coloring of your choice

melt butter and combine all ingredients... beat until smooth.  frost cookies when they are cool.

Notes from the Deep End

Hello there cyber-space friends.  It has been a long time since my last post... I have no good excuse except life in general...LOL.  However, October is Down syndrome Awareness month and October 1st is as good a day as any to come out from hiding and show my support for Down syndrome Awareness (and also share some of the crazy shenanigans cooked up by those Collins boys).

I know I have posted this before... but I love this analogy written by a mother of a son who has Down syndrome.  Definitely worth another look...

So to all my Sistas out there... I will see you all in the Deep End.

Notes from the Deep End

I was thirty-seven years old when my husband and I decided it was time to have a baby. We had been married nine years, together for sixteen. We had put it off for all this time in order to focus on careers, travel, fun, ourselves. My job was pretty glamorous: vice-president of a big publishing company in New York City. My life was filled with interesting writers, fascinating trips, sparkling conversation, fine wine, speaking engagements. I saw having a baby as something to “check off a list.” Something to do. And besides, a baby would go so well with my new black suit. So I signed up for the Gwyneth Paltrow version of motherhood. The Kelly Ripa woman-on-the-go scenario. The version of motherhood that gets glamorized in People magazine. But in my heart of hearts, I was scared. Terrified. I didn’t want my life to change that much. Still, I had the anticipation of regret and I thought having a baby would be “good for me.” So picture this: parenthood, to me, was like a giant swimming pool. I saw other people in the pool and they looked okay. But I was hesitant to even stick a toe in. I didn’t want to get wet. Other parents said to me, “going into the pool can be really scary. But it’s all worth it.” I thought to myself, “if they can do it, so can I.” And, tentatively, I put my foot in the water. Suddenly someone grabbed me from behind and threw me in the deep end. In the deep end! How unfair! You don’t take the person most frightened of the water and throw them in the deep end! Throw another person in the deep end, someone who’s used to the pool! Someone who knows how to swim! “I’m going to die,” I thought. I railed against the unfairness of it all, the shock of the cold water. But instinct kicked in and clumsily I moved my arms and legs. And I did not drown. Gagging and coughing and choking and sputtering I had a question: “Who did this to me,” I wanted to know. “How did this happen?!” My head went under and panic set in. I moved my arms and legs more and I did not drown. Now I was treading water. I noticed there were other people in the deep end with me, and they were offering to help. But I didn’t want to be in their Deep End Club. And besides, I didn’t think I even belonged here, it was only a matter of time before someone told me it was all a mistake and I’d be pulled out of the pool to safety. “I should have left well enough alone. I should never have tried to go into the pool,” I thought. And as I continued to tread water I noticed something else: I did not drown. Soon I started to float. I felt pretty much alone but the panic had subsided and I knew I could survive although it wouldn’t be pleasant. And I did not drown. But then I noticed there was a little boy in the deep end with me, a little boy named Nicholas with eyes that crinkle up like half moons when he smiles. A little boy named Nicholas who loves Bruce Springsteen and Puccini’s “La Boheme” and 1940s Big Band Music. And Nicholas could swim. Looking at him, I began to realize that I might be able to do more than float someday. I might be able to swim. And I might even enjoy it. Perhaps I’d even love it. I realized that the deep end allows for underwater somersaults and in the deep end, it’s possible to dive. You can’t do that in the shallow end. And perhaps someday, with Nicholas at my side, we’d both wave to the parents at the shallow end of the pool and say, “you don’t know what you’re missing, here in the deep end.”

-JenEndyB

mother to Nicholas (3/31/05)

I will take 1 banana grove to go, please!

I have put considerable thought into planting my own banana grove in order to maintain my children's banana bread addiction.  Seriously... is is like smack for my kids!  Alright... I will admit I am an enabler but this recipe is really that good!  

I almost feel guilty calling it "bread", because although it is deliciously disguised as bread  it hangs more with the yummy dessert crowd.  I mean really... do my kids sit down and beg for "moooorrrrrrrre whole-wheeeeeeeeeat bread pleeeeeeeeeeeease..".  No, they don't.  However they jump around like they have ants in their pants and do the "happy dance" throughout the prep and baking process and then are overcome with the NEED to consume several slices while it is still so hot that it burns their tongues.  And then the little masochists plead for more.  

Banana bread has magical bargaining properties.... just sayin'

It is absolutely amazing how quickly rooms get cleaned, clothes get put away and other dreadful requests are completed... with smiles no less... when the promised reward is a slice (or 2) of warm banana bread.  ****epiphany alert****  Seriously... can it be that easy????   

Well, as luck would have it I am not a recipe hoarder and I am prepared to share with you my magical banana bread recipe.  I cannot take full credit, as I stole it years ago from the Collins Family Reunion cookbook... but in my defense I have made changes to the original recipe... hence giving it it's magical and slightly more nutritional qualities.

so here goes... enjoy

Magic (disappearing) Banana Bread

Mix thoroughly: on medium speed


3 eggs
1c. sugar
1c. applesauce
Add 2 cups mashed bananas (a little more never hurt) 
2c. flour
1tsp. baking soda
1/4 tsp. salt
1tsp cinnamon... or nutmeg... or cardamon ... or a bit  of all three (I use whatever I have around at the time)


**optional... 1 cup of the following or a combination:
Chopped nuts
Craisins. Raisins
Chopped apples.  
(I typically just play it straight but sometimes it is fun to change it up a bit... and as long as we are being completely honest here... I usually don't measure this step.  I just throw a handful in and go with it)


 (ok seriously... just so there are no delusions here... I do not sift and fold!  I just dump everything in together and mix it all (medium speed) up but if you feel so inclined... do what you need to do... I promise it will taste the same in the end)


Decide if you want  1 big loaf or 2 smaller loaves (I usually do 2 small-medium loaves ... 2 smaller loaves allow for pacing. One for now ... and one for later).


Using either butter or non-stick spray, coat the inside of your pans (bottom and sides)... I do this step even when using non-stick pans or baking stone loaf pans where this step is not needed.... but do it... yummy things will happen.  Ok to use disposable metal pans too... great to give one to your neighbors who will no doubt comment on the incredible new smell wafting from your house!


Then dust the pans with sugar... yes... sugar... NOT flour!  Just dump in a bit of sugar, tap and tilt the pan until the sugar sticks to the sides and bottom of the pan.   


Pour in your batter.  sprinkle a bit of cinnamon and sugar on the top of the batter before putting into the oven.


Bake at 350 degrees for 50 minutes***... about 15 minutes more for one large loaf.  The bread should begin to pull away from the sides of the pan a bit and if you poke the center with a fork (or other sharp implement) it should come out clean.


***Now for those of you who have ovens that really work and really bake at the temperature they say they do and actually have a pre-heat feature...please keep in mind that I do not.  So please note that baking times may vary.

Eat and enjoy.  

rare sighting: 14 years in the making

I feel inclined to post this picture due the rarity of its nature.  Here you will see both Pat and I in the same picture... actually touching, both smiling, both with our eyes open, both looking remarkably un-constipated and sober and no one is holding rabbit ears behind our heads!!!  

Now just sit back and take it all in... 

On August 10th we celebrated 14 years of wedded bliss and in that 14 years I can probably show with one hand the number of pictures that meet the above criteria.   So enjoy this rare treasure and please do your best to refrain from photoshopping in pirate mustaches and goatees... (which is a bit more our style I will admit)... and just stare in wide-eye wonder at this oddity before you....LOL.  

I love you honey... can't wait to see what the next 14 years has to bring!