blessed and lucky

A Brand New Day

2011-04-28T10:58:00.003-05:00

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!

2011-03-18T08:58:00.000-05:00

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

2011-03-04T10:22:00.006-06:00

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!

2011-01-04T12:35:00.001-06:00

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

2010-10-27T13:09:00.000-05:00

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!!!!

2010-10-24T08:48:00.001-05:00

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.

2010-10-20T16:16:00.002-05:00

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

2010-10-13T22:26:00.001-05:00

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)

2010-10-13T13:08:00.000-05:00

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...

2010-10-12T08:35:00.000-05:00

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?

2010-10-07T12:04:00.002-05:00

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!

2010-10-06T09:13:00.000-05:00

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...

2010-10-04T09:55:00.000-05:00

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

2010-10-01T20:09:00.000-05:00

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!

2010-08-12T10:27:00.003-05:00

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

2010-08-11T11:08:00.000-05:00

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!

and one month later...

2010-07-06T08:06:00.000-05:00

OMG... so I just realized that is has been over a month since my last post... Seriously... where does the time go???

It has been a crazy month full of laughs and tears, hellos (welcome to the family baby "Muddus") and good-byes (love you always Grandma Powell), a broken bone, family, friends, baseball, a cub scout camp out, skateboarding, swim lessons, we got new phones... finally, therapies, 2 trips to Michigan and I am now noticing... several blog drafts that never made it to posting.

Just know that we are all alive and well and have found these things to be true... Coffee is good. Wine is good-er. Coffee or wine with good friends is good-er-er. My children have NOT perfected the fine art of sleeping in and their names have officially been changed to Button Pusher, Instigator and Naughty... Patrick now answers to Enabler. Yes, seriously! Food cooked on the grill always tastes better. Kittens don't need to walk when they have a 2 year old who carries them everywhere. Legos, even really small ones, can tear the skin off a calloused heal when stepped upon. Sponge Bob Squarepants has an unholy grip on my children (I am not proud of this). iphones ROCK (comparatively speaking, any phone that was replacing my 7 year old dinosaur of a phone would have been awesome... but I LOVE my iphone). It is possible to work a 30 hour day. AND... it is inevitable that when applying spray on sunscreen to yourself you will miss at least one spot... especially if it is windy.

The next week is going to fly by as I am getting prepared for the UL Convention... OMG I am so excited. I just need to fine-tune my presentation just a bit and avoid the urge to over pack. But once I return our normally scheduled program will return (with pictures)!

uppercase living convention teaser...

2010-06-08T11:18:00.001-05:00

OMG...OMG... OMG... Look what arrived this morning... wouldn't you all like to know what's inside... tee hee hee [insert evil laugh here] Well, I will tell you... it is full of goodies from Uppercase Living that I will be using to create some fabulous and creative displays for the Uppercase Living convention in July (and fingers crossed I think there is another box yet to arrive??? Jaron... call me!!!).

I am so excited to have been selected as one of the Creativity Segment Presenters for convention this year. This is such an incredible honor and opportunity! Along with my fancy new title comes top secret information about some new Uppercase Living products that will be revealed at Convention and appear in the new Fall/Winter Uppercase Living catalog... (and some of them are inside those boxes!!!)

So let your imaginations run wild thinking about what is inside those boxes.... go on... think big... think fabulous... think amazing... because Uppercase Living did!!!

Convention goers... prepare yourselves to be wowed! All lovers of Uppercase Living... be prepared for some amazing new expressions and accessories that are sure to blow you away... book your parties now to be the first kids on the block to get your hands on the new catalog!!

And also don't forget that the Summer Splash incentive is running now through July 12th... BUY ONE GET ONE FREE! You can contact me or check out my website for more info.

gotcha day

2010-05-21T07:29:00.000-05:00

The boys are beyond excited that the kitties are finally home to stay. I picked them up yesterday afternoon and they are so adorable. They play together and with us and they sleep in a heap of orange and white fluff. There have been lessons on holding and lifting and so far so good. Sean does not think that kitties should be allowed to walk anywhere and Sam likes to point out their eyes and noses and Andrew likes to play with them. Andrew was up (far from stealth) at zero-dark hundred hours this morning to play with the kitties but they had a good night and appear to be adjusting well to their new home.

You can barely tell them apart, but if you look real close you can tell that one is every so slightly darker than the other and the "M" on his forehead is more prominent. The darker one is Cooper and the lighter one is Kitty 2.

and this is the bow that Patrick made...

2010-05-19T19:33:00.004-05:00

OK... if you don't hear from me in awhile it will be because Patrick has confiscated my computer or worse...tossed it out the window... to avoid the humiliation resulting from future posts of a similar nature.

For starters (I will start with the really-super-cool-awesome reason that brought me to this post and slowly lead into the more embarrassing stuff) I have been selected as a Creative Segment presenter at the upcoming Uppercase Living Convention in July. OMG!!! I am sooo excited. This is such an honor, however after signing the non-disclosure agreement my lips are sealed!

However... that brings me to the stuff I CAN talk about. Long story short... before even being selected to present at convention, I told a fellow Uppercase Living demonstrator and convention roommate that I would help her with her bow-tying woes. (BTW... I will not be presenting about bows...LOL) Well one thing led to another and now there seems to be a cult movement of sorts and a little one-on-one demo has turned into a room full of women and few pitchers of margaritas. I think it is great that so many people want to exchange ideas and I am really looking forward to it. I have several different ways to tie bows and knots but with such a crowd I want to make sure that I could teach this to the masses. The techniques are quite simple and the results can be pretty dramatic. I could do this in my sleep, but in a room full of women armed with scissors I wanted to make sure that this seemingly easy task does not get out of hand...LOL.

Then a bit of panic set in... but only for a moment... and then I got an idea.... I will teach Patrick to tie a bow. Yes, Patrick, my husband who does not have a creative bone in his body and would rather dig ditches naked in manure than be caught tying bows (so as to keep manliness intact I will mention that he was threatened into this and he was made to conform under duress).

So with much grumbling... this is the bow that Patrick made.

Not too shabby! Of course to make it even more painful I made him use the sparkly ribbon... of course. Now don't go pegging me for a sadist... there a method behind my madness. My thought was that if I could get Patrick to tie a decent bow in 10 minutes or less then I would have no problems with a room full of eager bow-challenged women. Seriously... if Patrick can tie a bow like this just imagine the bow-tying frenzy that will follow!

...and here is proof (and might I add wearing his marine corps tee shirt no less)! Real men do tie bows!

(thank you honey for being such a good sport xxoo)

#5 in your program... #1 in your heart!

2010-05-15T21:25:00.001-05:00

Today was Sam's first Challenger baseball game of the year. At first I think he was a bit disappointed because there was no mud on the field (there is usually more mud than field)... but he found a way to get dirty anyway. Sam still does not want to wear his hat, batting helmet and will only occasionally agree to wear his mitt but I am pleased to say that he stayed on the field the entire game. Pat got a work out but Sam didn't escape once and he didn't throw any balls into the road... the 8 foot fence worked to our advantage.

I think Sam gets bored in the field and would rather play in the dirt but he seems to have caught on to base running. In his own round-about way he makes it to first base and eventually all the way around... he even slid into home plate!

WTG Challengers!!!! Great game today!

checking out the field

play ball

choosing a bat

keep your eye on the ball

slugger

look at that form!

running... bases

safe on first

a busy weekend in three short chapters...

2010-05-10T06:56:00.003-05:00

Chapater 1

Mother's Day program at Andrew's school. There was singing and poems read and fabulous art work and all the mothers were all served cookies and lemonade.

Chapter 2

Andrew's First Communion at Prince of Peace Catholic Church. Andrew was chosen to be one of the children to bring up the host for the mass. He did a wonderful job and he looked so very handsome in his suit. After the Mass we went to the Olive Garden for lunch (Andrew's choice) and had a really nice afternoon with family.

Chapter 3

Mother's Day. Since Grandma Moore (and Papa Moore too) and Grandma Mema were here for Andrew's First Communion I was able to take my mom and MIL to get pedicures. Now we all have pretty feet and painted toes. ***OK... we will use the term "pretty" loosely LOL but they are painted all the same*** Pat cooked ribs on the grill, we went for a walk and the boys went fishing and everyone had a nice day.

It was a very nice weekend.

take me out to the ballpark...

2010-05-05T20:29:00.000-05:00

So let me set the scene...

It is a warm summer evening and there is a nice breeze. The baseball field is full of kids of all abilities playing catch and getting serious about their sport....Challenger baseball!

Sam is at baseball practice and his Dad is his buddy and is coaxing him to participate. I am standing some distance away at a small playground area with Andrew, Sean and a few other kids. All the Challenger baseball kids, of all abilities, have partnered up and are throwing balls back and forth. Sam is running in the grass and has more interest in making Pat run after balls than an actual game of catch.

From a distance I am watching Sam run bases... his way (which is just another way of saying that Sam was running around a lot with no real direction). He is stealing other kids balls and throwing them in every direction. I really think that the idea of playing catch completely escapes him... either that or he just likes to watch people run after balls. Pat has no doubt broken a sweat at this point. Sam (AKA The Grounds Keeper) is all over the field. At one point I hear the coach yell "WE HAVE A RUNNER" as I turn to look and see that Sam has gotten out of the fenced area and is running full tilt towards the road.

This has become a game of sorts.

He waits until he thinks no one is paying attention and then he bolts. His giggles are that of a child who wants to get caught... but not before he lets you know that the score is Sam 1, parent-unaware 0. I am sure this was much more comical from a distance where I got to see the whole scene unfold.

Sam started making his way toward the gate. Bigger kids moved out of the way and actually assisted him to navigate the bats and helmets that slowed his progress a bit. And then he shifted into 4th gear. I hear the coach yell. I see Pat who was helping another kid bat, spring up and scan the field only to realize that Sam was gone. Just as Sam reached the street Pat scooped him up and brought him back inside the fence.

Now Sam has a mission. He is now determined that he will make it to the street. And now another idea occurs to him.... if I can't go into the street I can make others go into the street.

So now I see Sam pick up a ball and throw it. Not to anyone in particular but a good throw all the same. He then walks over to his ball, picks it up and throws it again. Good job Sam, I am thinking. Slowly but surely he is making his way across the field... until he reaches the fence. He then tosses the ball over the fence and into the road. Cars are breaking, adults are running and Sam is quite pleased with himself. Over the course of the practice Sam threw 2 balls into the street and escaped 3 times.

About 3/4 of the way through practice Sam is DONE. He is exhausted from all the "base running". He makes another break for it and starts to head over towards the small playground, takes a brief break at the swings and then takes off towards a concrete area that is behind the school. I try to coax him back to the game but he is... done. Sam is a master of the famous "stop, drop and flop" and he executes this perfectly making it impossible for me to lift him. As if to tell me that he is not moving another inch... he rolls to his back and puts his hands behind his head and just lounges there on the hard cement. He has had a good day, a fun practice and now he is pooped out.

Briefly he joins the team again but under protest. With very little cooperation from Sam we get him, Andrew and Sean loaded into the van. With practice over we are headed home for baths and bed.

Another great practice.

you can't take just one!

2010-04-30T14:53:00.001-05:00

OK... seriously... I can hardly stand how cute these babies are. Sadly, Garth's passing has left a hole in our family. And like Garth, all our cats have sort of found us. However, in this case I have been on the hunt but I knew that the right cat would find its way to us.

So I posted a little plea on facebook and literally seconds later I got a response that there were some available kittens in need of a good home. You will notice that we are going in a new direction this time... as all our past cats (Nikki, Krammer and Garth) were all black. In the beginning that was a stipulation enforced by Pat... "the cat must be all black"... as if he thought there was a shortage of black cats, therefore reducing the likelihood of us getting one. Obviously his plan backfired as I never had any problems finding black cats. However, these yellow-delightful balls of fluff are going to do just fine. So I went over today to take a peek. It was an done deal!

We will be adopting 2... the one Sean is holding and another one of the same sex (whatever that may be). But don't tell Pat... he as agreed to 1 but I am sure that he will soon realize the logic of having two. Of course it will have been his idea all along (to adopt 2 kittens) and we will all acknowledge his keen foresight, generosity and humanitarian obligation. LOL.

As of right now Sean has named his cat "Kitty 2" (gonna have to work on that)... they won't be ready to leave their mother for a few more weeks so that will give us some time.

Good-Kitty Garth

2010-04-22T12:32:00.000-05:00

Last night I made a hard decision that I know was for the best but my heart is still breaking. For the past several weeks our cat has been vomiting and has been getting slowly worse. Changing his diet and other interventions didn't help any but the last straw was when I saw him struggling to get up the steps. My heart sank and I knew what had to be done but it is such a hard call to make.

Garth has been with us since I was 6 months pregnant with Andrew. He used to sleep on my hip every night and purr. He only did this when I was pregnant and we actually joked about this when Garth started sleeping on my chest before I found out I was pregnant with Sean. He knew before we did.

Garth was a stray that used to hang around my parent's house and sleep on my uncle's roof. Pat did NOT want another cat but he said that if the cat was around when we were ready to leave we could take him back home with us. I know he was thinking that we would never see that cat again... well almost on cue Garth came out from under a car and started figure eights around Pat's legs. And he has been with us ever since.

He was such a good cat with a silky black coat and crazy yellow eyes. He had all of his claws and never once lashed out at my boys with his claws out. Now that is saying a lot if you know how they toted him around and "loved" him. If they got to rough he would come over and bite me! He was gentle and playful and a really wonderful part of our family.

So as I hunt around for more kleenex I can tell you that although it was so very hard to make the final decision to put him to rest I think it would have been so much harder to watch him get any worse. The boys all got their chance to say good-bye and even Sam and Sean realized the gravity of the situation. Sam gave him kisses and rubbed his ear and Sean pointed out his eyes and nose and Andrew told him how much he loved him and would never forget him.

So may you rest in peace good-kitty Garth we love you and miss you.

Garth

RIP 4/21/10

Beauty in the eye of a special needs mom

2010-04-19T09:05:00.000-05:00

Wow... It seems like forever since my last post... maybe because it has been! Several things have happened since my last post including the passing of a friend (ELE), a wedding, set a date to have the crappy windows replaced (and out those crappy windows also went any hopes of getting an iphone anytime soon), a trip to Michigan, cat vomit and more cat vomit, Easter x2, the kick off of soccer season and much more.

Needless to say we have been busy. That statement could be followed up with "well when are you not busy" but busy is good and it means that everyone is healthy and active.

In vain I have tried to keep up with the house work. You would be hard pressed to walk into my house and fine a tidy area. It is not that I have not tried but when you are followed by tornadoes all day what is left in the wake is destruction and chaos and a faint unpleasant scent. There is however, a roughly sketched plan that in the end will leave me with a tidy space and a place to hide chaos rather than put it on display. This plan involves a few built ins, a very large garage sale, a few bottles of wine and patience!

Piles of laundry are currently heaped on the couch waiting to be folded and put away... secretly I like to think of it as a staging area for all the clothes that fit. I am gearing up for the mother of all garage sales and most of the clothes that are actually still in the boys drawers don't fit (otherwise they would have been worn and washed and in a heap on the couch)... so slowly I am trying to remove those clothes, reshuffle closets and get organized for the garage sale. So you see there is some logic to my madness.

Amidst all this chaos that has become our norm... something wonderful has taken place. Something that to the naked eye may seem common place and insignificant. Something that in a moment of distraction would have been missed. Something that despite its incredible beauty is under appreciated by most.

Yesterday as effortlessly as you please, Sam walked up 2 steps on our front porch, reached the door and rang the door bell. Then stood there waiting patiently to enter the house.

Now why is this such a big deal you might ask... well it is because Sam did it! This quite, unassuming moment is a big-black-sharpie-marker-line in Sam's developmental time line. Sam has never, without dropping to all fours or without holding someone's hand climbed these stairs on his own. There is no handrail for support or balance. He didn't even break his stride... he just marched right up those steps like he had been doing it all along and then he didn't drop to his knees... he stood patiently and waited. We have been working on stair climbing (up and down) with Sam for a very long time but this was an unexpected surprise.

It was only 2 steps.... 2 beautiful steps taken with such mastery that I had to stop and pinch myself to make sure that I actually saw what I just saw. When Sam learns a new skill it is not without first enduring months and years of repetitive practice. Rarely does Sam let on that this new skill is sinking in or even that he is any closer to mastering it then he was 6 months or even 2 years ago. I have learned with Sam that "nothing is impossible... the impossible just takes a little longer" but even then I sometimes get wrapped up in a wet blanket of possibility that there are things that he will never "get". Yet, like a shock wave of clarity he nails a new and unexpected skill all at once... and that is just how he rolls. There is no pre-warning, there is no almost there... there is only ON and OFF with Sam. The switch will remain off until Sam is ready to turn it on and then a new bright light shines where there was only darkness before. It is truly a thing of beauty to behold the birth of a new light.

So for now my messy house and chaotic schedule are here to stay. And as I slowly try to remedy my clutter situation I will remember those 2 beautiful little steps that lead the way... slow and steady wins the race.

Mommy needs a break... or maybe just a happier ending.

2010-03-22T10:23:00.000-05:00

Not that this hasn't crossed my mind before, but our recent movie marathon really got me thinking. Have you ever really thought about all the kids movies that seem to have this underlying dysfunctional-family format that does not include a Mother? Just sit and think a moment about all the movies in which the Mom is dead or out of the picture or dies in the first 5 minutes of the movie... Bambi, Finding Nemo, Little Mermaid, Harry Potter, Astro Boy, Cloudy with a Chance of Meatballs, Chicken Little, Kung Fu Panda, Barnyard, Sleeping Beauty, Cinderella, Snow White, Aladdin, Beauty and the Beast, Pocahontas, Dumbo just to name a few.

Now there are occasions when a mother figure is interjected after the apparent demise of the original loving mother... but that does not always work out well as in the case of Cinderella and Snow White for example. Occasionally you will see a picture of "Mom" on the wall or in a book or a dream or there may be a brief mention that alludes to the fact that the main character's current problem would have been alleviated or the blow somewhat softened or even avoided all together if only "Mom were here"... "she would know what to do...".

Sometimes mom makes a brief cameo appearance in the beginning of the film but then is absent as a result of a horrible illness, forest fire, or maybe she sacrificed herself to save her family and sometimes she is not mentioned at all. In any case Dad is left to carry on raising a small soul on his own. And in most cases Dad rises to the occasion (as distant or strict as he may be at times before that one defining moment when father and child unite) and in the end the child(ren) tend to end up pretty well and find themselves wed into the royal family, or star of the baseball team, or save the world and ultimately live happily ever after... just what every parent wants for their child. Kudos to Dad.

There are few films in which mom survives. The Incredibles, for instance, keeps both parents alive throughout the film. But I can remember watching it for the first time just waiting for them to off Elasti-Girl (AKA Mom) and then being surprised that she "made it". It just seems more common for the hero (or heroine) to loose one or both parents than it is for them to grow up in a "perfect" family. Maybe this makes the main character more relatable or "real" or builds compassion for his plight??? Perhaps the element of the missing parent is meant to punctuate the perseverance and ability to overcome great obstacles and succeed against all odds or just a poorly dealt hand in life???

But why the need for the single parent family? Is it too much work for the writers to spare Moms life? Did it take the death of the person closest to the hero to catapult them to a higher level of greatness? Really, how significant to the plot is the fact that the Mother is dead and gone? Could the hero of the story not succeed in a two parent household? And how do we find entertainment in the loss of others and subject our children to such themes at such an early age... death, sadness and loss are present in all these films. We laugh, we cry we by the action figures but do we ever really address these life issues with our children? Granted there is usually a good moral to the story and everything turns out fine in the end but the road the heros and heroines travel is dark and difficult and full of pot holes and we seem to conveniently glaze over that part. I was an adult before I realized just how gruesome fairytales really are and perhaps more true to life than we care to acknowledge. I for one hope that my children continue to blindly enjoy their movies and are also well into adulthood before they fully grasp the underlying evils of their favorite classics. Fairytale heros, it would appear, are not spared from difficult families, loss and death, evil and misfortune... but perhaps that is the real moral of the story... What doesn't kill you makes you stronger... and then (if you are lucky) you marry the prince and live happily ever after.

Sometimes I want to think of Mom as a raving bitch that just ran off in a fit of drunken rage or as just a horrible person instead of someone who selflessly gave up their life to save that of her child... that way at least I am glad to see her gone and I don't feel so sad for this poor beautiful motherless child who must endure years of pain before ultimately full filling their destiny. Even in fairytales life is never easy. Happily Ever After does not come without a price it would appear.

Let them eat cake...

2010-02-27T21:05:00.001-06:00

Andrew had to bake a cake for the Father-Son cake auction for the Cub Scout Blue and Gold banquet. Of course Andrew didn't just want to make any cake... NO... he wanted to make a dinosaur cake. A meat-eater standing on 2 legs or a Spinosauras to be exact.

So I searched the internet to get ideas and 2 boxes of confetti cake mix, 3 cans of frosting, 2 cans of spray frosting (aerosol food coloring), several skewers, fruit roll ups, candy corns, a few lady finger cookies, gummy rings and a few smashed up gram crackers later... this is what we came up with. There is even a "rock" made from a left over piece of cake a few gummy frogs were thrown in for food.

Now if we can get it to the banquet in one piece that will be a miracle

OMG... BTGO is back!

2010-02-26T16:29:00.003-06:00

March 1st (begins at Noon MT) to April 5th

Visit my Uppercase Living website

Celery... enter stage right!

2010-02-26T07:54:00.000-06:00

Last night was Andrew's second grade musical. The Fruit of a Loom guys can eat their hearts out... they don't have anything on the fruits and veggies (dairy, protein, grains and junk food too) that stole the show. Andrew was celery and who knew that celery could talk or should I stay stalk... at night when the grocery store is closed... well that is exactly what 4 kids found out when they were accidentally locked in a grocery store one night. The kids did a great job and the songs were so cute and all kids did such a great job with their singing and speaking parts.

Of course my camera battery died just as Andrew was taking the stage for his speaking part... and of course the back up batteries that I scrambled to replace were also old too {note to self... remove old batteries from camera case right now and put new ones in the camera} But he did an excellent job and we were so very proud of him.

CELERY: YEAH! When you are brimming with vitamins and minerals, then you can talk.... until then pardon me if I just stalk on by!

I will love him and pet him and squeeze him and call him Garth

2010-02-17T18:50:00.002-06:00

Sean has been a bit under the weather the past few days but he is beginning to feel better and the cat knows that better than anyone. Sean is constantly chasing Garth, loving and squeezing him and feeding him way too many treats. I don't feel sorry for the cat one bit... he could easily get away if he wanted to and yet he subjects himself to Sean's smothering.

This is an amazingly tolerant cat. He has all of his claws and I rarely see him lash out at any of the boys...and when he does he rarely even brings his claws out. I am sure that he knows on some primal level that he has a pretty good life here and therefore he keeps his attitude and manners in check most of the time.... even when a bit of schooling is in order.

So Sean is once again on the prowl and Garth is on full alert. Sean will pick him up and carry him around every chance he gets. He will pull him out from under the table, off the bed and he will push him in the laundry basket (yes the cat will sit in the laundry basket, much to Sean's delight for a ride). Now Garth is not a docile animal but his willingness to bow to Sean's will is commendable. Sometimes I wonder if Garth tolerates Sean to the extent that he does because he knows he will be rewarded handsomely. Sean routinely climbs up onto the counter to retrieve a generous handful of treats for Garth who is well aware that Sean pays no attention to the 3 treat a day limit that the rest of the household abides by.

Heeeeeeeersssssss Johnny Sean!

I love my boy

Good kitty Garth

partners in crime

HAPPY VALENTINE'S DAY

2010-02-13T12:39:00.000-06:00

XOXO

(thank you boys... i love you too, mom)

homework break

2010-02-11T15:33:00.002-06:00

Over the past few days we got something like 10+ inches of snow... no snow days from school but lots and lots of snow, even more shoveling and more snow. Andrew has been thrilled... in part because of the fluffy frozen wonderland that is now our yard and because I let him play a little longer in the snow before having to come in a finish his homework. With a reported less than 6 weeks left of winter... enjoy it my little man... it won't be around much longer.

let the races begin...

2010-02-11T11:28:00.000-06:00

At this year's Cub Scout Derby race Andrew wanted a Wright Brother's inspired car. He worked hard and Papa Moore helped him realize his design. Andrew took a 3rd, 2nd and 1st place ribbons on the day of the race and he won a trophy for the "Most Original" design. With the wings, his car would have been too wide to race... so for display purposes the wings fit nicely on the frame but are removed for the actual race. Andrew painted the car but purposely wanted to leave the wings unpainted so they looked like the original plane built by the Wright brothers.

Andrew's car is on the right.

Andrew receiving his award for Most Original car.

boys are doin' it for themselves...

2010-02-11T11:11:00.000-06:00

So last night I set out 2 over-ripe bananas in mixing bowl on the counter. Now when I say over-ripe I really mean brown and mushy and very sad looking compared to the newly purchased happy yellow bananas currently hanging from the banana tree. That being said... these over rip bananas were a thing of beauty... perfect for the bread I intended to bake today.

Sean is my good eater and he loves his fruits and veggies and he is not shy about helping himself. He has been known to open the refrigerator/freezer door, climb the shelves like a little monkey and purge himself on frozen peas, grapes, baby carrots or other staples that may be in there. Although I don't like him climbing on the table, or pushing chairs into the kitchen to reach something on the counter or literally climbing into the fridge... I try to keep it all in perspective... my child is stealing veggies! Not cookies or cakes... VEGGIES! Clearly, I must have done something right.

So back to the over-ripe bananas.

Exercising my half-assed parenting skills... I sat at my computer this morning, phone to my ear, working with a client and left my very content child mildly supervised, sitting in the laundry basket with his matchbox cars... and the cat... watching Sid The Science Kid on PBS. I could see him over my shoulder (don't tell him but also could see his reflection in my computer screen... eyes in the back of my head... HA!) but when I glanced back a few minutes later his concentrated silence and the plastic knife he was playing with should have tipped me off.

OK before I get a bunch of " you let your 2 year old play with knives" comments, I should preface that he often uses dull plastic knives (purchased in the kid section of IKEA... yea you know the ones) as one would a screw driver to "fix" his toys and pretends to change out the batteries like Daddy does. So NO, the knife is not the best solution but Half-Assed Parenting Tip #64 tells me that a small, dull, plastic object does less harm in the hands of a 2 year old than does a sharp, 10 inch, metal one. Pick your battles wisely young grasshopper.

So out of the corner of my computer screen I a reflection of Sean appearing to fix something... no harm no foul. Moments later see Sean retreat to the kitchen and return with the broom and dust pan.

OK now I am curious.

I soon discover that he has helped himself to the two over-ripe bananas and was using the knife to cut them up... and was now using the broom and dust pan to clean up his mess. What a good boy! To my horror I can see that one banana was partly consumed on the couch, the other on the carpet... both half eaten and half smashed. Sean is doing his best to sweep up the banana peal and the remaining banana smush into the dust pan. No... this is not a guilty cover up... NO... this is a boy who has just helped himself to a snack and is dutifully cleaning up after himself.

OMG... does this mean that after all this time I am actually doing something right! LOL.

I help him finish cleaning up and he helps me locate all the remaining bits of banana. Why he picked the yucky bananas over the fresh ones... I don't know. What I do know is that Andrew will be one sad little boy when he gets home from school and I have to tell him he will have to wait a few more days for banana bread.

guess who's baaaaack?

2010-02-06T21:50:00.003-06:00

Yes... "THAT" family was back in church today... same song...second verse...a little bit louder and a little bit worse! Seriously, I don't know what I was thinking when I signed up for our family portrait to be taken for the church directory. Oh yea... it was the promise of a free sitting with no pressure.

We don't have a very good history as far as family portraits go. Usually by the end of the session we all have that "OMG just hurry up and take the bleep-bleep photo" smiles stuck on on our faces, someone is crying, at least one person has their eyes closed in every proof, someone has "bunny ears" and at least one someone has decided that right now would be the perfect time to poop (complete with red face and "the pooping look"... oh the memories). Oh and here is a favorite classic of mine... The "I refuse to look at the photographer and if you make me I will give you an Oscar winning performance of a possessed child" act followed by the biggest "I am really gonna make you pay for this later" grin you have ever seen. Yes these are just a few of the cherished moments that we have been so blessed to have captured on film.

So we decided on a "casual" look and set our expectations very low. We arrived in the Gathering Space early and signed in. We had a few minutes to wait and I don't know what it is about that room but it is like they pump 100% oxygen directly into Pat's face and immediately he is zoned out. As I look over my shoulder from the registration table, I can see that my children are no longer sitting on the couch where I left them. They are running about and Pat is just sitting there twirling his hair... Good God Man, Look Alive!

I am beginning to feel a bit fearful that we have set ourselves up for disaster. The boys have ants in their pants and they are multiplying exponentially. It would appear that my husband has just popped a handful of Valium and will be of no use when it comes to wrangling the boys. At this moment I am certain that there is about zero chance that the boys will sit still on command for any given amount of time, smiling is out of the question and tears are inevitable. As each minute passes the likelihood of our even making it into the directory catalog is dwindling.

I can see our legacy now... "Collins Family: Not pictured due to irreconcilable differences... please pray for them"

Well as it turned out, a wicked case of the giggles was our downfall... not to be outdone by the procreating ants in the pants... but we managed to get a few decent pictures. Yea us! So of course we had to buy them. We hadn't planned on buying any pictures, but like manna from heaven, you take it when you can get it.

Although the photographer was trying to convince me to choose a different pose of the boys, I choose one with Andrew sporting his "I am posing for a picture fake smile" complete with raised eyebrows, Sam has his "Mr. Naughty" smile and Sean has his "I am so cute I could charm my way out of just about anything" grin. It is perfectly them. And we actually got a decent family picture too. Amazingly, no one has "bunny ears" or a "I am pooping" look on their face, Pat is smiling (really) and I don't look drunk or half asleep.

OMG we did it!

Best of all... nothing got broke (that wasn't already broke) and "THAT" family left with their dignity intact! That right there makes any family outing a success on all accounts... a decent picture is just an added bonus.

there goes "THAT" family....

2010-01-26T09:09:00.001-06:00

This past Sunday at church we became... "THAT" family. As per usual we arrived a wee late... we didn't really miss anything, yet late enough that clearly we would not find room on the end of a pew where we would have room for Sam's wheelchair and the rest of us to fit without performing a complex circus act. I believe the Catholic Church frowns upon families balancing one on top of another's shoulders during mass... not to mention what child protective services would think about us not having any trained spotters.

Needless to say, we opted to sit in the foyer or Gathering Space where although you can hear everything you are buffered from the rest of the congregation by large glass windows. We were not alone in the Gathering Space, which is usually the place to be if you arrive late or have small children.

Yup... that's us.

So the boys are behaving and being quiet and just as I am feeling pretty good about our ability to make it through to the end of mass with no major melt downs.... it happens. The unassuming toy car that we allowed Sean to bring into church starts making noses that I didn't know it was capable of. I thought this was a harmless, soft, quiet toy that would keep him busy but quiet for the next 50 minutes. Little did I realize (but Sean was fully aware) that the little car when pulled backwards, following a loud series of clicks, and released... would squeal and lurch and zip across the tile floor and echo the most distracting noises throughout the Gathering Space all to Sean's delight and everyone else's displeasure.

In that instant... we became "THAT" family. You know the family that you continue to discuss over breakfast and either say a prayer for them or hangyour head and sigh... all the while thankful that it is not YOUR family. Pat and I both exchanges loaded glances and although we didn't speak it was clear we were thinking the same thing... do you want to grab it or should I? Is that sound really worse than the screaming that will surely follow? Following our unsuccessful snatch-n-grab, screaming rang through the Gathering Space and brief conversation between Pat and Andrew as to the whereabouts of the baggy of Apple Jacks (that was apparently left in the van somewhere).

We tried to hide the car and that made things even worse. Sean found it every time and his wailing got increasing louder and more pathetic each time we took it away. He finally then threw himself onto the floor in a limp attempt to gain sympathy. I think he was actually ready for a nap but had to put in a good show to save face. We just let him lay there, face down, on the tile floor.

Andrew then starts giggling.

Then Sam wiggles his way out of his wheelchair harness and reaches down and grabs a handful of Sean's hair.

More screaming.

More giggles.

I now have the car stuffed into my coat and am attempting to keep it out of sight, Sean perfectly executed the "stop, drop and flop" maneuver. Sam, feeling a bit left out, is kicking the foot rest on his wheelchair and the sound is resonating loudly throughout the Gathering Space. Andrew is still giggling. Pat has his head bowed in prayer and pretending that he is not related to us... either that or he is asleep on his feet and completely oblivious to the happenings going on around him.

Finally mass has ended. Everyone who leaves after communion is now exiting the sanctuary and entering the Gathering Space. Yet we remain. Patrick, the good Catholic boy that he is, insists on staying until the priest and the gifts exit. Me, the protestant girl, thinks that crisis management is futile at this point and we should just cut our losses get out now. In the swirl of people and commotion I attempt to put the boys coats on. Patrick is still praying. Sean finds a water bottle underneath the wheelchair and is now watering a large potted plant...

Seriously???

We get the boys all loaded into the van and head out for breakfast. Patrick is more alert now and we both know that very soon a large hot cup of coffee will be put in front of us. Once again all is right in the world.

Thank goodness "THAT" family left the premisses.

Reading Corner

2010-01-22T09:59:00.001-06:00

So I just started Sam and Sean on the Your Baby Can Read program (thank you grandma moore). We will be using the program over the next several months and I am very curious to see if it works. The concept is simple and I think there is some real potential here. In the past we have tried Out Of The Box, that involves the parents hand writing a series of flash cards that are presented to the child on a regular rotating schedule focusing on the whole word concept, however it really didn't keep Sam's interest (please note that I know several children who use this program with great success and the kids love it). The Your Baby Can Read program, for starters, revolves around watching the DVD(s) twice a day... bonus for Sam who loves videos... and also incorporates flashcards, interactive books, slide cards and music.

On first impression I am impressed with the quality of the flash cards, books and other materials. The videos are simple but engaging and interactive. Sean is 2 and I will admit that he has been getting a bit distracted near the end of the video but Sam seems to enjoy it... especially watching the kids. Sam is 7, and although a few years older than the recommended target age of the Your Baby Can Read program, he is developmentally closer to 2 also. So I am curious to see how well both boys respond. So far both boys interact with the video; clapping and waving appropriately and Sean is attempting to repeat the words.

We have only been at this for a few days now but I will post their progress over the next few months.

A bike for Sam: a happy insurance story

2010-01-19T11:34:00.002-06:00

I am so completely thrilled to announce that Sam is now the proud new owner of a DISCOVERY BIKE by Freedom Concepts! And better yet.... wait for it... wait for it.... I was able to get it covered by our medical insurance.

For starters I should mention, for those of you who don't know, the Discovery Bike is an adaptive mobility device for persons with special needs. This is not the kind of bike you would purchase for a typically developing child and once you see the price tag you will notice that it leaves your average $60 huffy in the dust. As with all things created with persons with special needs in mind, the Discovery Bike is expensive... think used car, 1 year college room and board or new appliances for your kitchen. Seriously, unless you have a child who clearly could not ride another bike due to medical issues or physical disabilities, you would not even consider entertaining the thought of purchasing a $4000.00 + bike for them. As beneficial as this sort of adaptive equipment may be for your child with special needs, you would also know that your insurance company, most likely, will not even consider a bike as a coverable expense making an adaptive device of this sort unattainable for many.

However, it is possible.... and I will tell you how I did it.

Please note that our results are not typical and I offer these tips to you for no other reason that they worked for us, but that does not guarantee that it will work for you. In the past we have been successful in acquiring a number of DME (durable medical equipment) items for Sam such as bath chairs, feeding pumps, suction machine, special needs car seat, feeder seats, therapy swing and most recently a Discovery Bike by Freedom Concepts. The process is roughly the same no matter what you are trying to acquire and sometimes you will be successful and other times, even after several appeals, you will fail. It is all part of being an advocate for your child with special needs.

The first thing that I will stress is to do your research! Read product descriptions, google the item you are interested in to find what other parents have to say about it and when possible request to see the item in person. Compare with other similar items and all accessories. Find out what accessories need to be ordered with the item and which could be ordered later... (***for example my son had a tumble form feeder seat. Due to the length of his g-tube feedings he would get sweaty and sometimes get a heat rash on his back. I found that tumble forms made a cover for the seat that could reduce sweating and was machine washable. Fabulous! However, our insurance would not cover this item. I found out at a later time that had the cover been purchased with the chair as an accessory it would have been covered.) Does the item have the potential to grow with your child (insurance companies like this one) or does it have a warranty? And most importantly make sure that you can justify the item itself as well as any accessories as medically necessary items. If the item you are looking for can only be found in specialty catalogs or websites gear specifically for persons with special needs that can work in your favor... and you can use the wording used to describe the item to help support your case. You must be able to prove that your child cannot use a standard made, off the rack, found at Toys R Us version of the item and you need to be able to support your claims.

Once you reach the point were you feel you could sell this product to just about anyone, you are ready to start collecting your letters of medical necessity. ***a tip.... if you have a nurse case manager... use them. Our nurse case manager was able to talk to insurance supervisors on our behalf and not only found out exactly what was required but she was able to keep me up to speed on the progress of our claim. She was able to direct me to a contact person at the insurance company to whom I had all the documentation sent to.... and they were expecting it and were already aware of what we were asking them to consider. This not only helps to speed up the process but it put our claim directly into the hands of someone who could make things happen. On one occasion I was told by a representative from my insurance company that "oh... we do have on record that we received something from you but it looked like a letter of medical necessity... we don't read those and it was just put into your file...". Now I am sure that was information that should have not been shared with me however, that clearly told me what I was up against. In actuality, it was a request for reimbursement but that clearly told me what I was up against. From then on I made sure that the nurse case manager was involved with all my claims because I could just call her to check on the status... if she had not heard anything she would go to bat for me and request further information... ultimately forcing someone to read the documentation that I sent them. ***another tip... Don't accept a NO from someone who doesn't have the power to give you a YES to begin with. Also as you speak with your nurse case manager and pled your case, they will make notes of your conversation and be able to provide even more info than what you state in your letter. This will allow you to keep your letter short and sweet but still make sure your voice is heard.

In writing your letter of medical necessity, concise wording is important. Yes, you should write one as your child's Advocate and think of it as a cover letter so to speak to tie all the other letters together. Your letter can be a bit less formal but should still clearly and unbiasedly state the facts. You should make a conscious effort to avoid using words that could sabotage your efforts. *** for example... Don't use Stroller (insurance companies don't like to cover strollers), DO USE Pediatric Wheelchair or Mobility/Transportation Device. Don't use Bike (unless in the name as in Discovery Bike), DO USE Adaptive Mobility Device or Therapy Aid. Also remember when requesting letters of medical necessity from Doctors, therapist, specialist etc to make sure that they avoid using any sabotage words in their letters also and request that they mention the same highlights that you mention in your letter. When gathering letters, I usually ask to speak to the nurse of the specialist or pediatrician that I am requesting a letter from. I find that they usually have more time to spend with me on the phone, they will email me a rough draft, make any corrections and then take the final letter to the doctor for their signature and final approval. I have found that by doing it this way I can get a much more detailed letter and I can help script it so that there is a nice cohesion between all the letters (I submitted 5 to get Sam's bike). And I try to get letters from everyone. For example, if I am mentioning how a particular item would provide benefits that could improve my child's respiratory health (as in a flexible neoprine harness to allow for full chest expansion when breathing), or improve GI function and provide neurological benefits (as in the reciprocal motion of a pedaling), or could offer my child a lifetime of weight management tools and other fitness benefits (physical activity is essential for persons with Down syndrome as it is well documented that they have issues with weight management and low tone... an exercise plan early on provides a lifetime of benefits) I make sure to get letters of medical necessity from each specialist that could support all my claims. (GI, neurologist, cardiologist, pulmonologist, pediatrician, therapists etc). You may also want to mention how an item would be beneficial to a caregiver helping them to reduce the risk of injury to themselves or the child (as when requesting bath chairs, lifting devices, hospital beds for the home etc).

You should document and be able to support everything you are asking for from a medical stand point. ***For example... if you are requesting a specific harness or accessory make sure to mention why that is important. Mention if this item is needed to keep your child safe, help to manage his reflux by keeping him upright or essential for proper positioning to keep their airway open and so on. Also note that initially, it will not always be someone with a medical degree who will be reading your letters of medical necessity. So especially if you are going to mention a rare or a somewhat little-known condition, or use a big medical term you might want to add a brief laymen's description. ***For example if you are going to list "Severe Oral Dysphagia" as a reason for medical necessity, the person reviewing your claim might not know that it is another name for "difficulty swallowing" so upon reviewing your plan they may not find "Dysphagia" as a condition that meets their criteria when in actuality "feeding issues, difficulty swallowing as a result of a defect or injury and oral motor difficulties" for example, are covered expenses. It is all in how it is worded and coded. However if the person doing the review does not know that these terms can sometimes be interchanged and could mean the same thing, your claim can be denied. So sometimes it is in your best interest to provide a little extra explanation for some diagnosis. In the same breath... short and sweet is your best option. Your letter will most likely be skimmed at best so lay your points out clearly and do it all in one page. This is another instance when a nurse case manager could help intervene and request that your claim be put in the hands of physician reviewer or other person who is knowledgeable of your child's condition or medical history.

I usually request that all the letters of medical necessity are sent to me and then I give them (along with the scripts) to our DME (Durable Medical Equipment) provider who submits them to the insurance company with all the proper codes. If you don't already have a DME provider, you can get a list of providers through your insurance company... make sure they are In Network. Depending on the item, you may even be able to have your child's therapist, or doctor submit the claim for you... sometimes you can even work with their school for some items.

Often times there is a waiting period to determine if a certain item is medically necessary or is a luxury item. This pre-determination period or pre-authorization period may vary and does not guarantee coverage... only whether or not an item meets the criteria of medical necessity. And remember that you can ALWAYS appeal. It is also acceptable to ask why your claim was denied and resubmit new info. Sometimes you will find that some items are just not covered by your insurance and no amount of appealing will get you what you want. But you can also request for them to provide you with the criteria used to determine coverage. **** for example Sam has Hirschsprung's disease and as a result had nearly his entire large intestine removed... leaving him with loose and frequent stools requiring him to wear diapers. I have tried my hardest to get our insurance company to cover his diapers, which are special order from a medical supply company, to no avail. When I requested my insurance company to provide me the reason they were not covered, I was given the response that "his condition was not the result of an illness or injury". After several phone calls I realized that they had no idea what Hirschsprung's disease was... so I submitted several more letters of medical necessity and described in detail what HD was and how it effected Sam. The letter I received after that is "Diapers are not a coverable expense" and because Sam is only 7, diapers are considered a luxury item and no amount of persuading was going to convince them otherwise. So although we are still paying out the nose for diapers... every year I submit another claim to see if his diapers will be covered. You never know exactly who is going to review your claims and sometimes there are instances when certain items fall in to "gray areas" where determination is left to a insurance representative's interpretation of your plan coverage. This is when a nurse case manager could also help you pled your case. So in the end you can't win all the time but you can win some of the time.

Mommyologists and child advocates everywhere know that dealing with your insurance company is not about winning the war but rather winning small battles.

Below is a copy of the actual letter that I sent to our insurance company requesting a Discovery Bike for Sam (personal info removed). This letter is no literary masterpiece but it got the job done... along with the several other letters of medical necessity from other medical professionals and therapists and documentation about the product itself.

Also know that there are several organizations out there that assist with funding for special needs equipment. If you are looking at getting a Discovery Bike please check out Project Mobility because they are doing amazing things at the Bike Rack... you will be inspired!

----------------------------------------------------------------------

Attention Pre-Authorization Department

To Whom It May Concern:

I am requesting the Pre-Authorization for a Discovery Bike for my son Samuel Collins. Sam was born at 27 weeks and has Down syndrome. Sam has required several major surgeries and long hospital stays due to a variety of medical conditions. Currently Sam is in good health and will turn 7 in December. About a year ago he learned how to walk independently and is gradually becoming more sure on his feet over a variety of terrains, however Sam still requires a wheelchair as he is unable to stand in one place for more than a few minutes at a time and due to stamina, balance, self-control and safety. Sam is currently 100% g-tube fed and has asthma.

Sam receives Physical therapy and speech therapies both in the school setting and privately. Sam has very low tone and physical therapy, both on land and in the pool has greatly improved his balance, coordination, stamina, spacial awareness, motor planning, respiratory health, over all strength, independence and ability to interact with peers. Reciprocal motion, as with walking and bike riding is not only beneficial to Sam physically but also neurologically as he has a history of Infantile Spasms (rare and severe form of epilepsy).

It is important for Sam to get exercise and to maintain an exercise routine throughout his lifetime (as low tone and weight management are often issues for persons with Down syndrome). Physical fitness will improve his quality of life, increase his strength and stamina, allow him to become more independent and help him to maintain good heart and respiratory health. Recently Sam has expressed a lot of interest in bicycles. As you can imagine he has to work harder than most to accomplish simple tasks that most children his age take for granted and do without much thought. Therapy is hard work and often times it is no fun at all and difficult to motivate a child. With Sam’s health, well-being, medical benefits and motivation at heart I feel that a special needs bike would motivate him and the long term health benefits are numerous. After much research I feel that the Discovery Bike is the best fit for him. For his own safety, low tone issues, balance, coordination, and cognitive delays, Sam requires a bike with restraints to keep him upright and to keep him from falling off. The Discovery Bike offers an appropriate 4 point butterfly harness that would allow Sam to maintain an upright position and also allow him to focus on other actions. Adjustable foot straps and many other adjustable features would allow this bike to grow with Sam. The Discovery Bike also comes complete with a rear steering and breaking system to allow a caregiver to steer and break from the rear of this mobility device as well as allow the rider, Sam, to navigate as well. Sam does not have the cognitive ability, the motor planning or the physical strength required to pedal, steer and balance on a bike all at the same time. However, I believe he will be capable of this in time. The Discover Bike allows us to provide Sam with the much needed assistance that he requires now and would also allow us to “give him wings” as he becomes more comfortable and is able to control the bike on his own. This bike also would allow for Sam’s short inseam. Other bikes that would allow for such a small inseam are not adequate for Sam’s size and weight. He has a very long torso but a very short inseam (common with persons who have Down syndrome)

Please authorize this piece of adaptive equipment, the Discovery Bike, for Sam. If you would like to talk with me further about this subject please contact me at your earliest convenience.

Thank you for your time

RaeAnn Collins (mother)

Wordless Wednesday

2010-01-12T15:01:00.001-06:00

Christmas Letter 2009

2009-12-22T15:43:00.000-06:00

Every year I write a Christmas Novella and send it out to a few hundred of our friends and family. Its purpose each year is to get every one up to speed on all the important highlights of the last year, provide a bit of holiday cheer and a few giggles. Each year the pressure mounts as more and more people keep asking "have you sent your letter out yet?"... "I can't wait to get your letter..." and my anxiety level rises as we stuff, stamp and seal up the letter and put it in the very able hands of our Post Master. It was one thing when I though that no one really reads Christmas Letters, but recent requests now have me wondering the contrary... So this year's letter has gone out in the mail and as always, I am feeling very anxious and hoping that it will be well received and will not disappoint. [right now I am imagining that you are all naked and trying to believe that no one really reads Christmas letters... just as a precaution I will also click my heals three times] So here it is... enjoy! Peace and Love to all this Holiday Season.

Merry Christmas One and All!

We hope this letter finds you happy, healthy and enjoying the holiday season. For those of you who despise Christmas letters… brace yourself…grab a few Christmas cookies and a cup of holiday cheer and settle in for what promises to be one of the longest Christmas letters you will open this year. [insert evil-elf laughing here] Please note that you are under no obligation to read all the fine print… just check out the enclosed photo, insert “oohs” and “ahhs” and “aren’t they just the cutest boys ever” where appropriate and discard this letter before anyone else sees it. Then, if needed, make whatever sort of reconciliation required to alleviate any guilt associated with this act of rebellion (com’on… you did just consider throwing out a Christmas letter and are sure to make Santa’s “Naughty” list)…perhaps it would be better to just shuffle it in with the junk mail and say “honey, oh look, they only sent a picture this year…” However, don’t forget the accolades (they are some pretty cute kids)… and besides, Santa is watching.

OK… We know what you have all been waiting to hear about… Sam’s super duper, incredible, amazing, over the moon, out of this world, once in a lifetime, waterproof-mascara worthy, magical, fantastic MAKE-A-WISH Trip to Disney World. We drove down a few days early to visit family and stayed at Give Kids The World Village (the Make A Wish Resort). We got the VIP treatment all the way and the out-pouring of kindness is something we will never forget. Our days were spent at the theme parks, meeting some new special friends and just doing our best to take it all in. We went to Magic Kingdom, Epcot, Animal Kingdom, Hollywood Studios, Islands of Adventure (Universal Studios), Sea World and Aquatica (Sea World’s waterpark). It was actually a challenge to pack all that and more into our week at Disney. We hope to plan another, much less extravagant, visit to Disney in the next few years with the vow that whenever we are in the Orlando area we will make arrangements to volunteer at least one day at Give Kids The World Village. The hard part will be explaining to the boys that next time we won’t have our special “magic passes” to allow us to bypass the long lines. And as if a week at Disney was not enough…we then traveled to see family in North Carolina and West Virginia and even spent a whirlwind day in Washington DC before returning home (Sam wanted to talk to the President about his health care plan but he was unavailable at the time…LOL). I think some of the most memorable highlights of our 2 week trip would be seeing the look on Sam’s face when he got to meet Cinderella and Princess Aurora, feeding the dolphins and sting rays at Sea World, watching Andrew battle Darth Vader in Jedi Training Academy and just spending time together as a family…OMG we packed so much in to our days and it was such a special vacation for all of us. And we learned that with faith, trust and a little bit of pixie dust… dreams really do come true! For more about Sam’s Wish trip, mundane ramblings about seemingly nothing, The Poncho Project, crazy antics of those Collins boys, pictures and even more pictures, you can visit our blog, Blessed and Lucky, at http://blessedandluckyarewe.blogspot.com

Andrew: The big man on campus just celebrated his 8^th birthday. Eight is Great! This year also holds many “I will when I am 8” promises, that although we are hoping to see through to fruition, find us feeling cautiously optimistic with our fingers crossed behind our backs. We realize that we just need to be patient and have faith that one-day he will realize that veggies can co-exist with other foods and ketchup does NOT taste good on everything. But alas, faith only makes things possible… not easy! He is enjoying second grade and is doing well in school. Andrew continues to receive speech therapy at school and works hard to master those darn “th” sounds and on being a more confident reader too. He is still active in soccer, swimming and cub scouts and continues to be curious and inquisitive. He often tells me “Mom, I am just a curious kid and that is why I ask a lot of questions”. This year in his Religious Ed. Classes, he is working towards his First Communion in the spring. Andrew is still very enthusiastic about his Lego creations and his creativity is impressive. He has the most vivid and remarkable imagination and the things that he comes up with are truly splendid and extraordinary. He is a visionary with a gift to see things that others do not and to create something out of seemingly random and unrelated bits and pieces.

Sam: I am thrilled to announce that this is the first year, EVER, in 7 years, that Sam has required NO surgeries or lengthy hospital stays. [insert happy dance here] He has been walking so much more and sometimes his pace is closer to a run. This year Sam played little league baseball for the Challengers. The Challengers team is made up of all kids with special needs. Although Sam did well with hitting and base running he preferred the position of grounds keeper… or goodwill ambassador. He inspected every mud puddle, he made sure the quality of the diamond dust met his high standards and just for fun he rolled in the grass…just for fun. Sam’s expressive vocabulary is also improving… not with words per say but he is getting his point across more clearly and he is using more augmentative tools. We are thrilled with his choice making and determination to help us understand. He has also been increasing interested in the Naughty Spot. Sam will proudly do his time in the place-of-honor, grinning from ear to ear and giddy that he is finally getting the same privilege as his brothers. Sam continues to love the water, music, swinging and tormenting his brothers every chance he gets. We are in the process of getting Sam a special needs bike and we are so excited to see all the places he will go!

Sean: On the very day of his second birthday, the four-letter word “NO-NO” became an integral part of his vocabulary cache. He is extremely fond of cars, balls, Ba-Bob (Sponge Bob), torturing Garth (our cat) and pooh-poohs (trains/choo-choos). I fear that our cat may be nearing the end of his nine- lives as a result of all the extra love and affection Sean gives him. Poor Garth is sat upon, dragged somewhere, smothered, bear hugged and over-served treats on numerous occasions…daily! 3 for 3…Sean is getting speech therapy too. Although his comprehension is above his age level, his expressive speech is below where it should be, however, I am sure that in no time flat he will be reciting Shakespearean quotes and conjugating verbs in Latin. Obviously he finds words overrated as he babbles complete volumes of incoherent ramblings that some how allow him to convey to you exactly what he wants. As always, slow and steady wins the race…even for boys with only 46 chromosomes. Sean has also proven to be quite the climber and will fearlessly copy anything the big boys do… except sit on Santa’s lap. However at the tender age of 2 he has already perfected the fine art of perusing the “Big Book” holiday catalog of toys so at very least Santa will be in the know…even if Sean won’t go anywhere near him.

Patrick: OK let’s just make this very clear…Pat will NEVER open his own Facebook account. Therefore, I will continue to be his go-between link to all his Facebook friends and diligently pass on all messages to my Facebook-aphobic husband. In return for my services, I ask only that you pass along any embarrassing moments, skeletons or other note-worthy tidbits that I could add to my arsenal to be used at my discretion at some later time. I will admit that Pat was a really good sport this year about dressing up as Dog Poop On A Shoe for Halloween and a Gingerbread Man Cookie for Christmas… and those pictures will be in circulation for years to come. [insert giggling here] Speaking of good sports, Pat is the head coach for Andrew’s soccer team, The Anacondas. I think he really had fun in the Fall season and is looking forward to the spring. Affectionately known as “President Pat”, he continues to be the active leader of our local parent Down syndrome support group, The DDC. And if you ever need to reach him… he is probably in his new “bunker” at the WPD, fighting crime one pro-bono hour at a time.

RaeAnn: I spend my days navigating land-minds (AKA matchbox cars and tiny Lego pieces) that no doubt will rip the skin off the bottom of your foot if stepped upon. Secretly I giggle each time I hear that tell-tale crackle sound of a Lego getting sucked up in to the vacuum… too bad that the Y chromosome impedes ones ability to clean up after themselves without constant reminding and years and years of repetitive practice. Boys will be boys! So basically I have several years of band-aids on my heels to look forward to. This year I did something I told myself I would never do… I took the plunge into the world of direct sales. I am now an Independent Demonstrator for Uppercase Living. (wanna know more… http://rjcollins.uppercaseliving.net) I also started the Poncho Project and continue to donate ponchos to kids in the hospital. Due to the article in Special Parent Magazine, I have gotten tons of requests for ponchos and have sent out several Poncho Kits so that others can sprinkle a bit of kindness too (if you have yet to receive a kit you requested… I haven’t forgotten…the list is just that long). Thank you to everyone who has donated fleece or who has made ponchos to donate to their local children’s hospital. Scattering kindness is contagious and it grows far beyond what you may realize… it is not what you reap but what you sew (or knot…LOL).

So as 2009 comes to a close, we once again reflect on all that is good and positive in our lives and we pause to count our blessings…twice! And many of us will begin to focus on areas where we could use some improvement… I am not going to mention any names but “Somebody” could focus on lowering their cholesterol. I foresee a life changing New Year’s Resolution in “Somebody’s” future… besides, the Lenten season is just around the corner, so perhaps God can intervene where medical intervention, free will and motivation have proven to be insufficient means to an end. So if you see “Somebody” in a moment of weakness…tell him to put the donut down and reach for Cheerios instead. And when making those life-changing resolutions, beware … the fast food industry has become an enabler, now offering fried options with zero trans-fat lulling us into a false sense of nutritional well-being. Not to fear…the car manufacturers have got our backs! Whether intentional or not, the fact that they are unable to stylishly produce a cup holder big enough to handle the largest to-go drink cup on even the slightest of turns does force us to at least consider choosing a smaller size drink, containing fewer calories, or subject ourselves to frequent detailing of our vehicles. I guess in the whole grand scheme of things it is probably best to just drink more water, avoid fast-food (except on long trips, or when failure to adequately prepare a meal is eminent, or just because French fries are the only veggie your child will consume without a major fight), show compassion toward others and in your spare time stage a peaceful sit-in demanding higher standards in cup holders. Good luck with all resolutions you make!

Be safe. Be happy. Be healthy. Be grateful. Be kind. Be Blessed.

Be honest. Be warm. Be compassionate. Be original. Believe.

Peace and love to all this holiday season… The Collins Family (pat, rae, andrew, sam & sean)

just too cute...

2009-12-16T15:08:00.000-06:00

OK... this just has to be about the cutest thing ever.

When I first noticed Sam getting off the bus I was concerned, as I always am when I see that he is wearing something other than what I sent him to school wearing. (this usually means that he had an accident, or he spilled something...)

So once we got inside the house I began striping off the layers to figure out what sort of "trouble" Sam had gotten himself into today. Much to my surprise, Sam was wearing a special shirt that he made at school. In the middle of the shirt Sam's footprint has been transformed into Rudolph the red-nosed reindeer! Is this not the cutest thing ever??? I love it.

Here comes Santa Claus!

2009-12-15T06:59:00.006-06:00

Every year The Down syndrome Development Council (The DDC), our local Down syndrome parent support group, hosts a Christmas party for our members. We always have lots of food and goodies and crafts for the kids.... but we know the kids are all just waiting for the big guy to show up with his bag full of presents.

This was the second time Sam and Andrew got to visit with Santa this year. The first meeting was at Sam's school and this was the report that followed:

Andrew: Mom I think it is so cool that Sam's teacher is
REALLY Mrs. Claus.

Me: huh?

Andrew: Ya, Mom. I saw Santa drive away in a car with Sam's teacher!

Sam is particularly excited about Santa this year. He was grinning from ear to ear. Andrew made several crafts for Santa and presented them to him before whispering his list into Santa's ear. You will notice that Sean is MIA. Eventually, Santa was able to lure him close enough to receive his gift but there was absolutely no way Sean was going to sit on Santa's lap. Sean's "snatch and grab" was much too fast to catch on film. Maybe next year.

Andrew and Sam with Mr. St. Nick himself at the DDC Christmas party.

the Poncho Project is growing...

2009-12-14T08:08:00.001-06:00

I am so excited to see the Poncho Project grow beyond anything I imagined and to know that there will be so many kids that will benefit from the efforts of everyone involved. So far I have sent out several poncho kits across the country to people who wanted to start up a poncho project to benefit their own local children's hospital. Some have been touched by a child with special needs, some are parents or grandparents, some are just kind souls who just want to give something back and put a smile on child's face.

One of these poncho kits landed in the hands of my friend Sandy C. She and some students from the Association of Clinical Lab Sciences at Ferris State University have been busy bees over the past several months working to raise funds and collect donations to make their poncho project a reality.

I am so excited to report that they have made over 40 ponchos and pillowcases/purses that they will be delivering to the Helen DeVos Children's Hospital in Grand Rapids this week!!! I applaud their efforts to bring a bit of joy to others. Thank you all so much. It sure looks like they had a lot of fun but they will have even more fun when they see the looks on the kids faces!

OMG... YOU GUYS ROCK!!! Keep up the good work :)

Happy 7th Birthday Sam!

2009-12-11T08:55:00.006-06:00

Today my chromosomally enhanced wonder boy turns 7... I cannot believe it. You don't have to think about it very long to realize just how far he has come in these past 7 years... today truly is a day to celebrate! To get a brief overview of how Sam got to where he is today... slow and steady wins the race!

From this 12/17/02... (Sam was 6 days old, 14 inches long and barely holding on to 2 pounds)

To this... 12/11/09 (Sam is 7 years old, 45" tall and 54 pounds)

We are so very proud of how far he has come and are excited to see all the places he will go. Happy Birthday my sweet boy... I hope the world can truly see just how wonderful you are!

The Pink Glove Dance

2009-12-08T14:36:00.004-06:00

This is great! Check out the

The Pink Glove Dance

and support Breast Cancer awareness!

EIGHT...OMG...EIGHT!!!

2009-11-23T11:03:00.000-06:00

It was a crazy birthday weekend for Andrew, who will turn 8 on the 24th. 8... EIGHT... OMG where has the time gone??? I cannot believe that he is 8! The big 8 also marks the beginning of several changes that will be in store over the next year. Andrew has informed us for some time now, that once he turned 8, he would eat more vegetables, keep his room clean without being asked and would be old enough to keep a tarantula or boa constrictor as a pet! Although my fingers are crossed and my hopes are high, I am not going to hold my breath waiting for all the "I will do that when I am 8, Mom" promises but there is one thing that I am certain of... and it involves pets of the big, hairy and dangerous variety. (Sorry, Buddy) So we look forward to celebrating Andrew's EIGHT IS GREAT year.

Andrew had a sleep over with some friends and it was loud and crazy and lots of fun. The boys played Wii and hyper-dash, built legos/bionicles, watched Star Trek and a Bionicles movie, devoured pizza and ice cream cake and got grossed-out eating Bertie Bott's Every-Flavor Beans .... vomit, sardine, rotten egg, dirt, earthworm, soap, black pepper, buttered popcorn, cinnamon, grass, blueberry, ear wax, booger and buttered toast to name a few. They also ate cotton candy gum that turned their mouth's bright blue! Yes, pictures will follow soon!

We are excited to celebrate this very special day. Nov. 24th at 7:35am will mark 8 years that Andrew decided to arrive 5 weeks early, while we were visiting family in another state, and forever change our lives for the better. Andrew is one amazing kid and an incredible big brother... we are truly blessed. Below are a few pics of Andrew throughout the past 8 amazing years (birthday pics to follow).

Happy Birthday... Andrew! We BIG LOVE YOU!

Wordless WISH Wednesday

2009-11-11T12:01:00.002-06:00

A bike for Sam

2009-11-09T08:46:00.006-06:00

Taking a brief pause between yet another Make-A-Wish post, I felt that this is a very note worthy sidestep. We have been on a search for a special needs bike for Sam. Every time we go to the park, Sam tries to hijack some kids' bike. Of course he does not have the balance, coordination, motor planning or other basic skills needed to sit on a bike without support not to mention actually ride a bike.

However, today I stand corrected.

We have been looking to get him a Discovery Bike by Freedom Concepts. This bike is like the "Cadillac" of special needs bikes and with all the bells and whistles also comes a very large price tag (but seriously... doesn't EVERY THING for special needs kids cost 5x more than it does for the general population???) but it is exactly what Sam needs. So we are in the process of working with our insurance to see if they will help us out with this $3,900.00 adaptive mobility device (if you want insurance to cover it you gotta know the lingo). So far so good *** please keep your fingers crossed***

So I found The Bike Rack , home of Creative Mobility and to my absolute joy I found that they are located in St. Charles IL... about an hour away. Check out the "hallmark heroes" video about Hal and the work they are doing over at the Bike Rack...but have your tissues ready. I had a long conversation with Hal Honeyman over the phone and made arrangements to meet with him and actually put Sam on a Discovery Bike to see if this was indeed the bike for him.

**kleenex warning

So we drive up and my excitement mounts as I see a variety of special needs bikes on display both outside and inside the show room. A few minutes later Sam is on a bike... wait.... SAM IS RIDING A BIKE.... he is actually riding this bike in the parking lot. At this point I am squealing and jumping up and down and I think I actually briefly reached an octave that only wild dogs could hear. Yes, Sam was actually riding this bike all by himself. Thankfully the Discovery Bike has a rear breaking and steering system that allows us to control him a bit and help him learn to navigate. I LOVE THIS BIKE, I LOVE HAL HONEYMAN AND I LOVE THE BIKE RACK!

We hope to hear back soon from our insurance. They requested more information and I am giving them more than they will know what to do with to support my efforts.

more friends...

2009-10-30T19:34:00.004-05:00

On our very last day we checked out of our villa and headed to Aquatica... Sea World's water park. It was Amazing. This is a family picture that was taken right inside the park. There is a water slide that shoots you down through a tube that goes right through a dolphin pool. I was going too fast to really see them but Andrew informed me later that if you sit up you go slower and can actually see them swimming above and around you.

When we went to Sea World we were able to take advantage of some special things that we may have otherwise passed up because of $$$ but our Make-A-Wish and GKTW passes got us the red carpet treatment all the way. Not only did the boys get free trays of fish for the dolphins and Sting Rays but we again were escorted to the front of the line and we were treated to some special dolphin introductions. This was something the boys were really looking forward too and it was incredible. Feeding the dolphins was one of the things that was truly a highlight and something the boys will never forget...Thank you so much Make-A-Wish. We were not only able to feed the dolphins but we got to touch them too. One of the trainers, (taking notice that we were a Wish family) used a whistle to call several dolphins over to our area and to have one come up on this ledge right by the wall, sit there and hold his tail up so that Sam could touch him. I think the many of the dolphins were moving too fast for Sam to really see them well so this was a nice treat so he could actually interact with them. We also got to feed the sting rays

They gave each of the boys a tray of fish to feed the dolphins... Sam immediately tossed the entire bowl right into the water... bowl and all. The trainer had to pluck it out of the water but then gave him another tray. You can't see her in the picture but the trainer has called this dolphin over and is asking him to stay there and wait for Sam to put the fish in his mougt and the surprised look on Sam's face is because the dolphin is talking to him too.

Same dolphin but with out the trainer instructing him... he was a bit more eager to snatch the fish away from Andrew.

This is one of the dolphins the trainer called over so that Sam could get a closer look.

These dolphins were chirping at us... Sam loved it

This is a pic of Sam waiting for the Shamu show.

A few new friends...

2009-10-30T12:44:00.007-05:00

These are pics of a few new friends we met. With our special passes from Make-A-Wish and Give Kids the World we were able to jump right to the front of all the character lines. I felt a little bad about it at first... the lines were always really long and so a few times we just got into the regular line with everyone else. However when anyone saw our badges they would escort us to the front of the line. One of the character helpers told me...

"you guys have to wait for enough in your lives and have had so many more challenges... you have a special pass for a reason and so no matter what anyone says you enjoy yourselves here, you are our special guests and special guests never wait... everyone here (at the parks) is always on the look out for your pass and they want to make your experience here one to remember and enjoyable and this is just a little thing that we can do to make things easier for our special guests. So please don't wait in lines anymore... Mickey said so"

Stitch stole Andrew's ice cream cone!

We actually had to wake Sam up several times during his visit with Woody and Jesse. It was such a hot day and we had a late night the night before. Sam just couldn't keep his eyes open. But they were very sweet.

Sam loved Goofy and Donald. He gave them both kisses.

Jedi Training Academy was sooooo cool. Andrew got to battle Darth Vader. Sean was a bit more leary of him but they all had a fun.

Oh how Sean Love's Cars. I thought he would be so excited to Lightning McQueen and Mater, but seconds after this pic was taken he fled the scene.

All you need is faith, trust and little bit of pixie dust. (notice Tinkerbell in our hands) We were all soaking wet from the rain but I think the picture turn out really cute.

Sam enjoyed meeting Buzz Light Year. We caught him just as it started raining.... it was a down pour. Andrew and Sean played in the rain while Sam met with Buzz. People kept asking us if we needed an umbrella... I said "no... it is snowing in Chicago... the rain is fabulous!"

OMG... the Princesses.

Sam was ga-ga over the Princesses. Picture this... I am soaking wet and standing in line with all these other mom's dressed to the hilt with their daughters in gowns and wings and all glittery and here I am with Sam. We of course got to go ahead of the line and I think they thought I was there to see the princesses until they saw Sam's reaction. He ran right up to the bench and called Cinderella over to sit next to him. He was so bashful at first and grinned from ear to ear. He gave her a big hug and was so excited when she signed his book.

Then he saw Princess Aurora (Sleeping Beauty). He danced with her for awhile then took his seat next to her on the bench. I thought he was going to climb right into her lap. H blew her kisses and could barely keep his hands to himself. When it was time to leave I took Sam's hand and said "Let's go Sam" and in his clearest most assertive voice he said "NOOOOOOO" and then looked back at Aurora and batted his eyes.

He was not so thrilled with Wolverine but I think he was still a bit scared after the interactive Spiderman ride.

Sam and Niko

Sam really enjoyed Goofy each time he saw him. This was a special visit at Give Kids the World. Sam danced with him and gave him kisses.

Pluto also made a big impression. I would be willing to bet that Sam appears in several other families pictures with Pluto... I just couldn't keep him away. This was also taken at GKTW. The private meetings that they have set up each morning are so special. Sam got to spend more time with them and you could tell he was really enjoying himself.

I absolutely love this picture!

Big kisses for Mickey (at GKTW)

Special meeting with Mickey and Minnie.

home again home again jiggity jog

2009-10-25T08:32:00.011-05:00

I am sure that it will take several posts to completely fill you all in on Sam's amazing Make-A-Wish trip to Disney. It truly was the trip of a life time. Here is the basic run down..

first we had to get all of this...

into this...

Day 1 (10.8.09)

We didn't end up leaving Lindenhurst until about 1:30 on Thursday when we planned to leave closer to 10:am. We picked up Andrew at school and headed out. I had made reservations at a hotel near Atlanta GA. The drive was pretty uneventful but we didn't arrive at the hotel until about 4:25 AM. I think the check in clerk thought I was nuts. But we checked in, got a few hours of sleep and were back on the road by 9:30am.

we had some fun along the way...

Day 2 (10/10/09)

We arrived at my Aunt Ann and Uncle Ray's house in Brandon FL at about 7:30PM. The boys were full of energy. We ordered pizza and called it a night. The next morning after a dip in the pool we headed out to Ybor City for Cuban sandwiches. We rode the trolley and spend the day just hanging out. We had our orientation appointment at Give Kids the World at 7:45pm and that is where we got all our tickets/passes. It was about an hour and a half drive and we just made it in time. However the orientation was filled so I waited for the 9:00 session. In the mean time we were escorted to our villa (#123) and began to settle in. The villas are amazing... 2 bedroom, 2 baths with a living room, laundry and large eat-in kitchens. Every morning we were surprised to find special gifts for the boys (everything from games, stuffed animals, DVDs and much more). I will write another post just about Give Kids the World Resort... it is an amazing place. And yet another post about all the characters and special people we met.

our home sweet home at GKTW

Day 3

Today we started hitting the parks. I will say that we had more passes than we had time to use them (Thank you Make A Wish). We planned to meet Uncle Ray and Aunt Ann at Universal Studios/Islands of Adventure. It was very clear that it was going to be a very hot week. Everyone was telling us that it was unseasonably warm for this time of year and there were times when I thought the boys might melt. So water rides were top on our list. At the end of the day we realized that we never even made it into Universal Studios... we spent the entire day in Islands of Adventure (AMAZING and they treated us like VIPs) You see with our special passes we got escorted to the front of the line...we never waited for more than a few minutes for anything. This was a blessing due to the heat but even then a very special treat indeed. When we tried to pass over to Universal at the end of the day we found that it was closed for their Halloween Bash (to reopen later that night). Besides we were all exhausted and hot so we headed back to the villa and ordered pizza and salad.

Aunt Ann and Uncle Ray

a place to cool down

Day 4

Today we went to Animal Kingdom. Again another hot day...I guess you could say it was Africa-Hot (LOL) but the boys really enjoyed the Safari ride and the Lion King show was amazing. After a long day we headed back to GKTW for some ice cream and a dip in the pool.

tree of life

my boys in front of the tree of life

Day 5

Today we went to Sea World. We saw some amazing shows and got to feed dolphins and stingrays and again got some special service with this. I have some great pics that I will post soon of the boys feeding the dolphins. We then took them to the underwater viewing area and it was funny to see a few of the dolphins really take an interest in Sam's wheelchair. The checked him out up and down... or it could have just been that they were saying thank you for all the fish. The first tray of fish Sam was given he through right into the water...the whole thing. They gave him another one but the dolphins really liked the extra treat. The assistant also kept calling them over to us and had them get up on a ledge so that the boys could touch them and get a really close look.

Day 6

Today we went to the Magic Kingdom and the Epcot laser light show/fireworks. We knew it would be a long day so we let the boys sleep in a bit. We stayed at the park all day (more on this later) then about 8:00 we took the monorail over to Epcot for the show.

Day 7

We went to Hollywood Studios and Magic Kingdom again then back to Hollywood Studios for the Fantasmic Show. Andrew was chosen for Jedi Training Academy and he did awesome (more on this later). We played in the Bugs Life playground and had a great day. In the late afternoon we headed back to the Magic Kingdom to catch a few special things that we missed. It started raining and the boys played in the rain. So after we were completely soaked we headed over to meet the Princesses (this will be a whole post later). Sam loves Cinderella so this was a must. With our special passes we got right to the front but being the only mom in line with a boy... and not being dressed in a gown with sparkles I got a few looks (LOL). OMG...this was amazing and I could hardly tear Sam away.

Day 8

Sadly this was the day that we had to leave GKTW. We packed up our stuff, gave Sam's star to the Star Fairy and all the boys made their special pillows (more later). And as one last treat...after we checked out we used our complimentary passes to go to Aquatica (water park at sea world). Then we started making our way to Apex North Carolina to see Brad and Kim. We stopped for the night and got an early start.

Day 9

We made to Brad and Kim's... yea!!!

Day 10

We went to the North Carolina State Fair... seriously the largest state fair ever and I swear they deep fry EVERYTHING. A whole lotta happy!

Day 11

We headed up to Martinsburg WV to see Pat's cousin Jen and her family. We had fun with the Sampsells and I think the kids were over joyed to be out of the van

Day 12

We headed to Washington DC for our whirlwind tour of the Capital.

Day 13

Started making our way back to IL. We stopped in Cleveland for the night and hit the hotel pool.

Day 14 (10.22.09)

Home again home again!

I have to say that our entire trip was wonderful... we tried not to rush too much, we pulled over to see interesting things, we ate when we were hungry and we slept...well never. There is no way possible to get everything in one post to look forward to several more.

Hey MOM!... Look what I did...

2009-10-05T19:54:00.003-05:00

I love these new forms that Sam is bringing home from school. Of course there is a note from the teacher also but these really allow me to communicate and interact with him. I am able to ask him about his day and he can point to the pics. The page is laminated and there is a bit of velcro to hold the pictures in place. Sam helps select the appropriate pics each day and puts them on his page which then comes home in his folder every night.

Sam has also started getting homework (which I love) and his teacher is working on literacy skills (LOVE this). His homework consists of a short book that we read to Sam several times and then a "book report" page with picture choices. I ask him the questions and he is able to respond by picking one of 2 picture choices. Sam is doing great in school and I can't wait to see all the new things he will learn this year. I am gearing up for his IEP the end of this month. In the past everyone has been on the same page and I am anticipating yet another smooth meeting (fingers crossed).

I am so proud of how far he has come. I learned long ago to never compare him to other children... Down syndrome or not. Sam is Sam... pure and simple. His delays are considered Moderate to Severe... basically, for me, that translates to less fighting for me when it comes to getting services for Sam. I believe that he is capable of much more than the tests would indicate but because his low scores I can usually have no problems getting this therapy or that therapy or whatever. Of course there are somethings that I wish they would focus on less... for example I have had enough of self help skills... OK... clearly my child has been taught how to remove his shoes and socks but can you also please work on putting them back on Pleeeeeaaasssse... and Thank you for teaching him how to take off his shirt to get ready for swimming but could you also please mention that it is not appropriate to remove your shirt in church or other public places (and for that matter just because you remove your shirt does not mean that you get to go to the pool)...LOL. Slow and steady wins the race!!! All in all I really like Sam's school placement and he LOVES going everyday.

the count down continues...

2009-10-05T06:56:00.004-05:00

As we continue to count down the days to Sam's epic wish trip... we have a few preparations that we still need to take care of...

Several months ago, Andrew expressed some interest in wanting to get his hair colored. There was a breast cancer fundraiser at his school and he wanted his hair pink in the worst way. However he was going to be in Ben and Erica's wedding so we told him NO. He was persistent so we told him that he could get his hair colored before we went on Sam's wish trip. Of course he remembered our promise...and being the so very cool parents that we are (LOL) it was off to the salon we went. I love that he wanted to express himself this way... I told him that I didn't care if he grew his hair long or shaved his head or dyed it a new color each week as long as he was respectful and kind and polite... it was fin with me. Now if he had his way he would have come out with 5 different colors, but I put my foot down... I didn't care what color but it would only be ONE color. He wore his favorite tie-dye shirt so that he could show the colorist exactly what color he wanted.

He choose this deep red, almost magenta color and I have to say I absolutely love it on him. He is thrilled with it too. And now, with Disney in our sites, it will be even easier to spot him in a crowd...LOL.

hi ho hi ho it's off to Disney we go...

2009-10-01T19:35:00.010-05:00

We are counting down the days until Sam's wish trip. I am excited and apprehensive and excited. On one hand I am thrilled that my family has this opportunity, while on the other hand I cringe to think about what it really means for Sam to be a "wish child". As wonderful as this experience is, no one really wants their child to be damaged in anyway enough for them to receive such an honor. I didn't want Sam to be a "wish child", I didn't want him to be born severely premature, I didn't want him to have open heart surgery, I didn't want them to remove his entire large intestine, I didn't want him to be only able to eat through his g-tube, I was angry when he was diagnosed with Infantile Spasms, I cried when he learned to walk at the age of 5 1/2, I didn't want to "live" at the hospital for his first year and I hated having oxygen tanks stashed all over the house. I didn't want Sam to be born with and extra chromosome but when it came right down to it... I wished that he ONLY had Down syndrome. I worried about Andrew... and although I was so impressed with his maturity there is just something just wrong about a 3 year old knowing how to silence the alarm on a pulse-oximeter and program a feeding pump.

Over the years, Sam has been granted a Wish twice in the past... and twice I turned it down. Initially I was angry. Very Angry and hurt. I actually choked out the words when I asked his nurse if the real meaning of Sam being granted a wish was the Doctors passive-aggressive way of telling me that there was nothing more they could do and that they were quietly giving up on my child. I felt defeated. I was not in a good place to hear what the well meaning wish granters had to tell me and through hot tears I turned them away.

Several months later I was in Sam's hospital room waiting and hoping for a miracle. Sam had been diagnosed with Infantile Spasms. This diagnosis came like a sucker punch. Sam's newly repaired heart had given us a new little boy, a pink, active little boy who was starting to roll over and hold up his head on his belly, drink from a bottle, eat cereal and could for the first time in his life... scream. We were thrilled that he finally had the energy and stamina to scream. However, there I was sitting in a hospital room with a quiet little boy who had all the wind just sucked out of his sails. I wanted my happy baby back. He was not even able to make eye contact at this point and I was angry that all his hard work was gone in flash and the only meaningful movements that he was now able to do came in quick clusters of myoclonic "jerk" seizures.

So here, in this room I waited.

When I was told that treatment was to start immediately, and it was unlikely that my insurance would cover this miracle drug, I wept. I was to find out later that it would be covered but it was in this impossible waiting place, not knowing if my child would get the treatment he so desperately needed, that Sam was granted a wish for a second time. Desperate, I agreed to listen to what the wish granter had to say. I do not know who sent them or where they came from... they just appeared. It felt like only seconds had passed from the time I was told that my son had a rare and life threatening form of epilepsy to the time the wish granter appeared in Sam's hospital room. Nothing punctuates the severity of your child's condition when Make A Wish pays you a visit before you are even discharged from the hospital. I can remember asking her if Make A Wish could cover Sam's $10.000+ dollar medication. She very nicely told me no. I agreed to listen to the rest of her spiel, but it kept sounding more and more like a timeshare offer. Here I had just bled my heart out to her about how we couldn't afford our child's medication (and I remember being annoyed thinking that she didn't hear me) and although it sounded nice...where in the hell did she think we were going to get the money to pay for this amazing once of a live time vacation??? I stopped her and said that we were not interested. I never did hear the part about it being no cost to us..... but I seriously doubt that at the time I could have.

Jump a few years ahead and we have rejoiced with several of our friends who have had amazing Make A Wish experiences. All of whom ask why Sam was never granted a wish. After telling them that he was actually granted 2 and I turned them both down, I thought they were on the verge of hosting an intervention. They filled me in and I realized that not only was I about the densest parent there was but that I was really denying my children a wonderful opportunity far beyond anything that we could do for them. After about a year I finally was able to put down my own hang ups and put down my pride and come to terms with the fact that this is not about me... it it about the boys...it is all for the boys. So I took a deep breath, I logged on to www.wish.org and I nominated Sam myself. GULP. DOUBLE GULP. To my surprise I got a phone call from Make A Wish almost immediately. I think they must have people just sitting there waiting to jump on the phones as soon as emails come in. And wouldn't you know it... Sam was still in the system the process had begun. This time I welcomed the wish granters (Deb and Bill Motzer) into our home and hung on every word they had to say. This time I experienced an entirely different set of emotions and instead of feeling raw and exposed I was overjoyed and deeply touched by the gifts that were being presented to Sam and our family.

I will admit I have felt a bit of guilt... all considering Sam is doing sooooooo very well and does not fit my preconceived notions of what I thought a wish child was (ie he does not have a trach, or cancer, or a transplant etc). A child only needs to be living with a life threatening condition... not be terminal...to qualify for a wish. AND every child who qualifies for a wish is granted a wish. Because one child gets granted a wish it does not mean that a potential wish is taken away from another child. Wishes are not granted based on financial information, need, or other factors.... only the fact that the child is living with a life threatening condition. A parent, doctor, nurse, therapist, teacher or para professional can nominate a child. To this day I do not know who nominated Sam the first two times.

So as I begin packing for our amazing Disney wish trip, I find myself thinking about all the things that I will NOT be packing... like tanks of oxygen for example. I am so excited to see the looks on the boys faces (well except Sean because he will be scared to death...LOL) when they see Mickey Mouse and the other characters. Sam loves Cinderella and I can't wait for him to see her castle. I can't wait for them to just be kids... not sick kids or kids with a sick brother... just kids at Disney. We are driving (our choice) and so I raided the dollar store and now I have a secret stash of goodies that I will pull out when a crisis arises. And you know that you really have not lived until you have driven 20 hours in 2 days with 3 children... needless to say I am planning on a few melt downs, lots of laughs, big smiles and one happy family.

So with all that being said... I am so excited to be taking my kids to Disney and for our family to be taking the trip of a life time. It is humbling to admit that this is something that we could not do for them on our own... perhaps in time but not right now, right now while they still believe in all the magic of Disney. I am so thrilled that Sam will be able to walk up to meet Mickey Mouse under his own power on his own two feet. And I am over-the-moon about all that the Make-A-Wish Foundation does for special kids and their families.

Blessed and Lucky are we!

OMG... I'm in love!!!

2009-09-25T15:56:00.003-05:00

**** SPOILER ALERT**** Mom... if you don't want to see what you are getting for Christmas (probably early because I am so excited) LOOK AWAY NOW!!!

I am in love with Uppercase Living new photo vinyl!!! I ordered my first photo vinyl and I will admit I was a bit skeptical. But I have to say I am absolutely thrilled. I ordered a 4' x 4' pic of the boys (yes that is 4 feet by 4 feet) and when you order a 4x4 or larger contour cut photo vinyl print you have the option of adding a value pack for only $14.95... the value pack includes two (2) 8" silhouettes (black only), one (1) 1o" (inch) color graphic and one (1) 18" (inch) color graphic. The 18" color graphic is what you see below above the stairs leading to my basement. And the best thing... they are removable and re-useable... so I can move it anywhere else I want. Now I just need to order a cute saying about "brothers" to go along with this pic.

I am not quite sure what to do with the silhouettes, but for now one is living above the coat rack... and the beauty of it is that I can remove it and put it somewhere else later.

(18" color graphic from value pack)

(10" silhouette)

If you have a great photo that you would like to seen blown up on your wall... go to my

Uppercase Living website for more info.

Buddy Walk, Trilliums and Down syndrome... OH MY!!!

2009-09-23T08:49:00.006-05:00

We have been so busy the past few weeks with getting things ready for the Buddy Walk. The DDC Buddy Walk is at Lambs Farm and in the end it was clear that the past 8 months of planning really paid off. The Buddy Walk is the DDC's largest fundraiser of the year and this even allows us to offer workshops, holiday events, newsletters, playgroups, social gatherings, movies and other activities free of charge to our members.

One of our fundraising efforts at this year's Buddy Walk was working with artist Suzanne Loechl and The Trillium Project The Trillium Project. Suzanne prepares these beautiful hand painted slate tiles. She then sent them to us, and with special pens, the parents of the DDC wrote on each tile. Suzanne then cut the tiles into pendants that we sold at the Buddy Walk.

These pendants (or Trilliums) are absolutely gorgeous. They turned out amazing... just like our kids with Down syndrome each pendant is unique and special and a tiny reminder of a person with Down syndrome who touched our hearts that we can take with us where ever we go. Once cut into pendants, you can only catch a glimpse of a few words but it is the idea of being part of a great whole.

The Trilliums created by DDC families are now for sale... single pendants are $35 each and $48 with a leather cord... all pendants come in a black draw-string bag. If you are interested in purchasing a Trillium... just email me. There are lots of colors to choose from. This is a great way to be fashionable and support a good cause at the same time!!!

What do you get when you mix water and sidewalk chalk?

2009-09-09T15:13:00.002-05:00

messy fun!!!

busy, busy, busy weekend

2009-09-08T22:33:00.007-05:00

wheeeewwwww! We are back from an insanely busy weekend in Northern Michigan. It was a close call there but we survived...LOL For starters we took the boys to the local fair, we went to Pat's 25th high school reunion, we rode on the Powell Painters float in the parade with the cousins, the boys went up for a quick fly in my Dad's plane and Andrew went to a Beach Bum game with Grandma and Grandpa Moore.

Sometimes I never feel that we get to stay in any one place long enough to really relax but it was good to see everyone. The boys were exhausted and slept all the way back home... about 10 hours due to traffic. The pics are a brief recap of our crazy trip...

first day of school

2009-08-24T08:25:00.004-05:00

Today Andrew and Sam start 2nd and 1st grades, respectively. Andrew is very excited and he insisted on dressing himself this morning (I allowed this outfit only because it is only a 1/2 day of school...we will make a bit more effort tomorrow...LOL). Sam was thrilled to be going back to school. He kept climbing into his wheelchair and checking out the window for the bus. Tomorrow will be both of their first full days of school.

I will be going to Sam's school tomorrow to show the nurse how to run his feeding pump. (I am sure she already knows but it will make me feel better) He will have to get a tube feeding at school... fingers crossed that will be a smooth transition for him. Andrew is excited because he LOVES all the hot lunch items lined up for the rest of the week... however he is less than thrilled with his selection of snack items I have for him (seriously... granola bars with rainbow chocolate chips, grapes, yogurt...you would think I was making him eat cow tongue).

So now it is just me and Sean at home. In 2 weeks we are starting the Little Listeners program (Mom and Tot early literacy/story time) at the library. He was a bit concerned when his brothers got on those big busses and rode away so I am sure he will be happy to greet them when they come home.

lions and tigers and bears... oh my

2009-08-20T20:48:00.004-05:00

Today we took a family trip to the Brookfield Zoo... family day out for Sean's birthday. The big attraction was Dinosaurs Alive. They were huge and they growled and they moved... the kids loved it. Most of the other animals seemed to be either asleep or have some other prior engagement, but the boys got to see a lot.

Sean was most excited about the cop car that was stationed inside the zoo and the tram. He can't say it yet but he has this odd growl that means dinosaur, he was a bit apprehensive at first but very excited to see the pics when I pulled them up on the computer. In the Swamp House there was an otter that took a liking to him and kept swimming right up to where Sean was standing in front of the glass... the otter would pop up and pause for a second, nose to nose with Sean, and then dive again. He did this several times and it was quite cute.

Sam liked the dinos too but it was sprinkling when we were going through that exhibit and I think he was distracted by that. Unfortunately for him all the railings around the animal enclosures just happened to be exactly at his eye level when seated in his wheelchair. That combined with the fact that the animals you could see were sleeping and most blended in so well they were hard to spot... made them virtually invisible to Sam. Sam really liked the playground but for some reason he had more fun moving from picnic table to picnic table and kicking wood chips. I think the squishy rubber ground surrounding the jungle gyms felt funny to him. But he did an amazing job of stepping over raised roots coming up out of the ground and navigating other objects.

Andrew RAN through the dinosaur exhibit rattling off all the names and general facts about each one to anyone who would listen. He also learned some new things in the reptile house. And then we stopped at this little play ground in the Zoo. It was all fun and games until Andrew, while playing tag with a new friend, yells "OH SHIT" at the top of his lungs. Let me tell you that was one proud mama moment for me....NOT!

OMG he is 2! Where did the time go?

2009-08-18T10:24:00.005-05:00

So these are more pics from the Sean's birthday and a few leading up to this day.

Sam is thinking... I want that hat!

Pat all geared up at the hospital just a few minutes before Sean was born.

I love this pic of Sam kissing Sean... he can't be more than a few days old.

Me and Sean home from the hospital.

Ok... you can say it... aaawwwwwwww!

This is me on my way to the hospital for Sean's c-section. My shirt says... "Does this shirt make me look fat?" I figured it would be the LAST time I would ever wear it.

This was taken the day before I delivered Sean. Obviously it was time to get him out as it would seem that I no longer had any shirts to cover up my belly.

the "naughty spot"

2009-08-17T10:47:00.006-05:00

Long before Super Nanny made her TV debut, we had already incorporated the use of the "naughty spot" into our daily routines. At first the Naughty Spot was the bottom step (at our old house) and then evolved to the snail mat... today the Naughty Spot is a small alcove leading to the master bedroom. We have a gate in front of our door to keep the kiddies out of our bedroom which turns this alcove into a small 3 sided area.

Sean spends a lot of time in the naughty spot... oddly enough I think he actually likes the naughty spot and will often times put him self in there (note to self... get a new naughty spot). Even Andrew has passed some time there when he needs to "collect his thoughts". Sam, however does not quite grasp the concept that you need to stay in time-out in the Naughty Spot until you are told you can leave. He often taunts his brothers or "visits" them in the Naughty Spot but I felt that he really didn't grasp the concept that it is a punishment... instead I felt like he thought that they were getting some preferential treatment and he felt left out.

Well today I realized that Sam knows the meaning of the Naughty Spot. I still think that he sees sit as a fun place or a place of honor so to speak but on a basic level... he KNOWS!

So I am drinking my coffee (yes my cold coffee that was brewed hours ago), and Sam started throwing toys out of the toy box. Not looking for anything in particular... just being naughty. I told him to stop and he looked right at me and continued with his business. I then asked him "DO YOU WANT TO GO TO THE NAUGHTY SPOT?" And wouldn't you know it... he got a huge grin on his face, put down the he was about to heave and merrily marched off to the Naughty Spot. He was absolutely giddy about his banishment... it was almost as if he was tossing things about just waiting for an invitation. Clearly he understands that if you do something "naughty" you have to take some time out in the naughty spot... however, whether or not he views this as a punishment or as just the thing to do is out to jury right now.

What cracks me up is that I think he was actually trying to get sent to the naughty spot. I should say that earlier this morning Sean was sent to the naughty spot for throwing cars... I guess Sam felt left out...LOL.

Sam in the "Naughty Spot"

now he got a little tired of standing but clearly still enjoying his internment

now he realizes that he is really in trouble

where did my baby go???

2009-08-16T22:12:00.010-05:00

Today my baby turns 2! I can't believe it. Sean was born on Aug. 17, 2007... he was my largest baby at 6lbs 10 oz.

I sing this little chant with him..." I'm a baby YEAH, I wear a diaper YEAH, I love my mama YEAH, 'cause I'm a baby... YEAH." and he dances around and does an arm-pump and yells YEAH at all the appropriate spots. It is hard to believe that my baby is now 2! Happy birthday baby Sean!

I will post more pictures later from Sean's special day but here are a few pictures that bring us up to today. Love you little man!

Powell Family Canoe trip

2009-08-11T12:11:00.005-05:00

This past weekend was the annual Powell family canoe trip down the Manistiee River. This is a pic of the advanced party... ie the people who slept over night in the apple orchard behind my Mom's house.

By the time we all gathered at Chippawa Landing we filled a large school bus. We all filed in and they took us to the drop off point... we had several large rafts, some canoes and some single and 2-man kayaks. I'm not sure anyone got an exact number but we were all armed with water guns, coolers and Party Girl even got a new bathing suit for the occasion.

Party Girl

We used some of Sam's 60cc syringes instead of squirt guns... those things really have a range (you would know that if you ever shot formula on your 20 foot ceiling)... they are small, quick and easy to load and easily concealed in the event of a sneak attack. They were such a big hit that now I think I know what I am getting my family for Christmas this year...lol. We had a few short breaks on the river and just about everyone took a turn on the rope swing. I don't think anyone made it down the river dry.

Pat sacrificed his glasses to the river and I heard another member of our group lost a wedding ring on the rope swing... needless to say the river Gods were pleased with our offerings and everyone had a great time.

The Cycle of Life...

2009-08-07T10:47:00.004-05:00

While we were in the UP at the reunion, the kids found literally thousands of Monarch caterpillars. They were all running around with plastic cups over-flowing with the crawling creatures. Although I am sure most parents were able to convince their children that the best thing for the caterpillars was to leave them right were the found them (and then wash their hands with lots of soap and water)... however, we were unsuccessful. So say hello to our little friend. Within a few days the caterpillar found a nice cozy spot and made a cocoon. Shortly after we had an invasion of carpenter ants (perhaps more stow-aways from our recent trip) so we bug bombed the house. At the last minute we realized that the cocoon was still inside and Pat made a daring rescue.

This morning Andrew found this...

and this.... inside his bug house.

Andrew gave the new butterfly some words of encouragement. He whispered "it's ok little guy...you can do it...it will be ok... go ahead and open your wings... I took good care of you but you have to get strong and fly away because I don't have any milkweed for you to eat... "

Andrew is beyond excited. After our brief photo shoot he put the Monarch on a bush to allow his wings to fully dry. I am sure he will be off in search of some milkweed very soon.