don't you wish it were easier to spot the good guy???

I love that commercial that says something like... don't you wish it were easier to spot the good guy..."  and you see these ordinary people wearing yellow capes in route no doubt to aid someone in need and ultimately save the day.  Super Heroes live among us, I am sure of this, but sometimes they are quite difficult to spot while it would appear that @$$ holes stand up to be counted every chance they get.  Along those same lines, I wish that Mean People came with a similar warning system so that you could avoid them without having to play victim to their insensitive ignorance and down right nasty impositions.  Wouldn't it be great if you could go to the park or your kid's soccer game and know immediately what kids were going to play nice... and what parents too for that matter?

We have been cooped up in the house for days now with runny noses and overall yuckiness... but everyone is doing a bit better and it was painfully clear that we were all in desperate need of some major doses of vitamin D... ie time in the sun.  So we head off to the park for just a bit. Going to the park is always a experiment in human nature.  We start by giving Andrew the parameters (ie you can't leave the wood chip area) and he is off like a shot.  It is only a matter of time before he hooks up with a "gang" and they embark on some adventure.   I try to let Sam interact with other kids as much as possible, letting him choose who he wants to engage and who and what he wants to play with (within reason of course) and I am always surprised by how kids and parents respond to Sam and to our family.  There are the parents who use Sam's presence as a chance to educate their child about kindness and diversity.  Then there are the parents who up-root their child to an entirely different side of the park as if fearful that Sam could give their child and extra chromosome just by being in close proximity to them.  And then there are the kids who aren't quite sure what to make of Sam.  I see them watch him and circle him like they are stalking pray.  They get closer and closer until they are finally sharing a shovel and bucket in the sand.  It all seems well and fine until the child starts kicking sand in Sam's face or poking him with a stick just to see what he will do.  I assimilate it to someone poking at roadkill on the side of the road to see if it will move...they know it is dead but they poke it anyway as if this is a completely acceptable opportunity to be cruel with out suffering any ramifications.   Now where the hell is that kid's parents??? At this point I step in and say something like  his name is Sam... or why don't you help him fill the bucket with sand.  Usually the child looks at me like... Lady, there is something wrong with this kid and slowly moves away.  But the thing that gets me the most is that usually these kids, the ones that find it difficult to come to terms with a peer with a disability, are much older than you might think. Now I might expect some sand throwing or toy-taking-away or something from a smaller child but these kids, these bullies, are at an age where they should know better.  And even worse is when I realize that their parents are sitting right behind us watching the whole scene unfold and they say nothing.  Seriously.  I have seen Andrew deflect a few children by saying... this is my brother Sam and he doesn't talk but if you keep throwing sand at him he won't stop and I will have to leave so let's go play over here (my that boy is wise beyond his years).  And then there are the kids who make a bee line for Sam, intent on getting the WHOLE story.  "Hey Lady, what's wrong with him?"  "Does he have a syndrome... I know what a syndrome is."  "Why can't he talk?"  At this points some parents try to discourage their child from asking what they feel are abrupt or inappropriate questions.  I try to answer everything they ask... these children are genuinely curious and there is a big difference between curious and mean.  And I so want to encourage curious and put and end to mean.  

So Summer... ready or not... here we come!

 

Finally... open for "business"

I am finally finished with my mini bathroom remodel.  After several coats of primer, a few more coats of paint and this fabulous paper airplane theme pack from Uppercase Living this room is now once again open for "business".  

The paint is from Sherwin Williams... it is their Harmony, it has almost zero odor and is environmental friendly.  The color is Latte and I'm lovin' it.  I really didn't appreciate how odorless this paint was until I painted the ceiling and trim with some left over paint I had... I will definitely use the Harmony brand again.  Pat had little say in the matter since he was not about to do any of the painting... he would rather dig ditches naked in manure than paint.  And I think that Pat is so overjoyed that I didn't ask him to help that if I play my cards right I might even get some new towels and maybe a rug.  But shhhhh... he has to think that it was his idea.  

The paper airplanes are from Uppercase Living .  There are 6 different white paper airplanes total and trailing blue dashes (30 colors to choose from).  This theme is much better suited for my boys than the cute yellow duckies that were previously here thanx to the previous owner (ackkkk).  I was so glad to see those ducks go and Andrew now says that his bathroom is AWESOME!  The only problem now is... I want to re-paint everything.

pharmacy or meth lab????

Most recently it would appear that we have contracted the plague.  Runny noses, coughing ack ack ack, fevers, headaches and crankiness all around.  NO... IT IS NOT THE SWINE FLU.  Just to make sure we popped in to sick call at the pediatrician's office.  Whooo Hooo no Flu.

However the flurry of symptoms have us stumped.  As it turns out I think Sean has croup.  Sam on the other hand has been on oxygen a week now and is just not moving air though his lungs the way he should.  His lungs are clear but his sats are low and he is requiring increasing amounts of oxygen.  He has been on antibiotics since March for an ongoing sinus infections that never seems to go away and after 5 days of steroids and more oxygen we were worried that he might have to be admitted to the hospital.  uhhhhhggggg.  

By the grace of God and a nurse with a knack for creating more hours in the day we were able to get in to see his pulmonologist who confirmed what we already suspected... sinus infections... again.  That makes 5 just this year alone. However what we didn't expect is that Sam's asthma, if not worse, is definitely playing a larger role in his ongoing issues and he now also has bronchitis.  So now with more meds on board we think things are finally moving in the right direction.  

Last night I stood in my kitchen trying to line up his 11 prescription meds and my brain was struggling to keep all the prescriptions straight (times, doses etc) on a mere fraction of the amount a sleep that the average human requires to remain upright and function on the most basic level, I found my self daydreaming how lucrative it would be to create a meth lab right here in my kitchen or perhaps I could open a back door pharmacy. 

You know your in trouble when the dosing directions are so long that they won't fit on the bottle the the pharmacist has to  type them out on a separate piece of paper... and then inform you that "we only have 3 of the 7 bottles in stock for this one prescription... you will have to pick up the rest tomorrow"  seriously 7 bottles!!! and that is just for one of his 11 meds.  I am telling you ... we are stocked! And those are just the meds that we are currently using... that is not counting the ones that have been permanently or temporally put on hold. 

So hopefully Sam will be back to him self very soon, Sean will stop barking like a seal pup and I will finally get some sleep.   

Look what the man in the little white truck brought

Each and every month the white delivery truck shows up and unloads this mountain of supplies for Sam.  Sam's monthly care package includes 7-8 cases of formula, 3-4 cases of diapers, syringes, extension tubing, suction machine canister and supplies, split gauze, wet-proof and clear tapes, 6 tubes of Critic Aid skin paste (for his on going horrible Hirschsprung's diaper rash), 30 feeding bags and every 2 months a mickey button replacement. And each and every month we pay the man in the white delivery truck $411.07 (ouch!) ... the portion that our insurance does not cover after deductibles and all that. Diapers, even though Sam requires them because of a medical condition ... Hirschsprung's disease and as a result virtually no large intestine... our insurance considers them a "comfort" item and does not cover this much needed item. They also only cover a small portion of his enteral formula.  Sam does not qualify for SSI, MR Waiver, public aid or other services out there.  Believe me I try... and try... and try.  I guess I should be thankful that he is still covered under our insurance plan but the down side is that these items would be covered if he qualified for some of these other services. 

Why don't you use pull-ups or a less expensive diaper you ask.... Well... bottom line... pull-ups don't hold poop!  And why do you get so many diapers??? Well... because Sam has only a tiny bit of large intestine left (everything from his appendix down is gone) he poops very very often and his stool is very very loose... that is just how it is.  

The other item that we pay out the nose for is his formula.  Sam is 100% g-tube fed and this formula, which is actually one of the cheaper ones out there, is his sole nutrition.  Our insurance company has decided upon an amount that they will agree to pay for his formula. However at that price our DME company (the owners of the white van) would actually loose money and therefore tell us... "Sorry, but we don't carry formula at all".   But we love the owners of that little white van and they have made an agreement with us that they will accept what insurance will pay and we pay for the rest. This way we get a little bit of a break instead of having to foot the entire bill.  

This is just part of our normal routine and an occurrence that happens without fail.  Skipping a delivery is not an option... we just might have to pick our favorite child and only let that one go to college but sometimes you just have to do what you have to do...LOL (that was a joke people). Someday, in the not so near future, Sam will be eating and will have bowel control and not needing his monthly delivery from the man in the little white truck... but for now remain dependent on them. And as much as I cringe every time I write out that check... I am also thankful that Sam is thriving and in the whole grand scheme of things it is a rather small price to pay.   But it is kinda of like special programs at school... when bills have to be paid it is the fun classes that get cut first.  So although $411.07 each monthly necessity, I do wish that I were using that money for fun things for Sam and not diapers and formula.

Much harder than it might appear...

I was recently contacted by Chicago Special Parent magazine and did a phone interview in response to The Poncho Project.  The interview will appear in the mag. sometime this summer. Anyway... they wanted a family pic.  Now that is a much harder request than it might appear.  I guess we don't have a lot of pics of us all together... usually Pat or I are behind the camera.  But wouldn't you know... our camera has a largely unused feature where you can set this little timer, step away from the camera and it will remotely take your picture... who knew????  OK... I did but had never really used it before.  So here our attempts at taking a family picture. ... 

(this one was taken with the photo booth widget on our computer)

Mother's Day Fun

I woke up Mother's Day morning to a bright-eyed little boy, who was waiting NOT so patiently for me to get out of bed, holding a bouquet of paper flowers that he made for me at school.  Absolutely the best way to wake up.  The day before the boys (all 4 of them) gave me flowers and a gift card so I could get a new bathing suit and do a little shopping ALONE.  So to wake up to even more flowers and Mother's Day surprises was wonderful.  

After church we went out to breakfast and then to the carnival a few towns over.  It was small but the perfect size.  Andrew hit the rides hard and I was wondering when the carnies were going to come over and demand that we buy him another wrist band... since he must have gone on every ride several times.  Sam was thrilled with this ride that had a variety of little cars, space ships or helicopters (all with horns) that went around and up and down.  We put him in a different car each time and I think he thought it was a new ride each time.  Sam and I rode on the ferris wheel while Andrew rode the bumper cars.  Pat who has a difficult time even watching spinning rides snapped pics with his camera phone.  Sean had to be removed from his first and only ride of the day.  The ride next to the one he was on had this really obnoxious really loud air horn... need I say more.  After that Sean didn't even want to go up to the gate of any of the rides... but he seemed perfectly thrilled to ride in the backpack and just watch his brothers.   So... seizing the moment... I took Sean's wrist band and went on some of the bigger rides with Andrew and Sam.  And once again we were touched by the kindness of the carnies working the rides and games.  Sam was given toys for games he didn't even play and even though the duck he picked would have won him a small toy, he got a BIG one.  

It was a wonderful day with my family.

Me and Sam on the ferris wheel

obviously this ride looses its charm after 3 or 4 times... 

but this kid in the red appears to be enjoying it for the very first time.

Sam loved this ride

Andrew mastered the tea cups... fastest spinner around

Happy Mother's Day

To all you special MOM's out there... ya you know who you are... remember that it is ok to wear your capes for special occasions!  Happy Mother's Day!

Puppy Love

I just had to post this pic of Sean and our neighbor's dog Magnus.  Magnus is just one month older than Sean... so basically they both have a lot more growing to do...LOL.  He is such a gentle giant and is very gentle...or I should say tolerant of the boys.  

Wordless Wednesday

He is the exception to the rule...

Sam just had his yearly follow up with his neurologist.  I love this man.  When Sam was 9 months old he was diagnosed with Infantile Spasms; also called West Syndrome Epilepsy.  Now this might sound like an unassuming name but don't be fooled... Infantile Spasms is a rare, severe and life threatening form of epilepsy.  It steals babies from their parents, it crushes dreams and pretty much all the literature out there preaches nothing but gloom and doom.

Sam was diagnosed roughly 2 months after his open heart surgery.  After a difficult beginning, to say the least, we were thrilled that at the time Sam was eating baby cereal and taking a bottle, he was rolling over and holding up his head and exceeding everyone's expectations... we could only see blue skies ahead.  We didn't see the sucker punch coming and were left gasping for air.  Later Sam's neurologist would tell us that that Sam's EEG was one of the worst he had ever seen, an 11 on a scale of 1-10, and that at very best we could hope that Sam would one day be able to hold our eye contact for 3-4 seconds at at time.  He told us to never give up hope but that we should prepare ourselves for the worst case scenario.  You see... when a person has epilepsy their brain waves reveal a spike(s) on the EEG during the actual seizure and regular (or somewhat regular) brain wave pattern the rest of the time.  They are able to function in the real world, hold a job, feed themselves, walk and live a fairly normal life.  However, with IS the chaotic scramble of brain waves is pretty constant.  This pattern is called Hypsarrhythmia or HYPS for short and usually reveals 13 or more chaotic spikes per minute.  While the brain is preoccupied with this chaotic pattern, development stops and in most cases regresses significantly.  Most children diagnosed with IS are not capable of simple things like maintaining eye contact, grasping objects, head control and other basic developmental skills.  Sam was no exception.  IS strikes most children between the ages of 3-18 months and eventually all kids will outgrow IS... unfortunately the rule more than the exception is that these kids will then develop or "grow into" another even an even more difficult to control from of epilepsy called Lennox-Gastaut Syndrome or LGS.  

Sam has been seizure free for a little over 5 years now and continues to progress.  We are ever watchful for any signs of weakness, seizures or other neurological issues that could arise at anytime... however the more distance he puts between his last seizure the more and more we are able to reassure ourselves that Sam will remain seizure free... possibly for the rest of his life.  ... each day is a gift.

Like I said... we had a follow up with his neurologist, Dr. Nishant Shah, Director of Peds. Neurology at Lutheran General Hospital.  He is thrilled with Sam's progress and told me that he is an exception to the rule and is probably doing the best of all his IS graduates.  This made my heart both leap and sink at the same time.  I rejoiced for Sam but I know first hand how devastating IS is and can only imagine how crushing a LGS diagnosis would be and I thought of all our IS friends still battling this terrifying beast and I wanted so very badly for their wars to be over.  I know that although Sam is still so very delayed he is a shining star in the universe of Infantile Spasms.  I am soooooo extremely happy for Sam and all the possibilities available to him but at the same time my heart goes out to all our IS friends who are living with and fighting to free their brains from the chaotic prison that holds them back.  I pray that someday they too find themselves in their neurologist's office hearing the same words that I heard...   Sam is an inspiration and a beacon of hope that YES, you can beat IS.  

And please know that I am not in denial.... I know that my child is still severely delayed, largely due to IS (with some other factors mixed in there for good measure), however with his IS resolved his brain is  able to develop new pathways and he is able to progress.  So when people look at my child and they feel sadness or pity because they only see how delayed he is... I know that they have no idea how wonderfully amazing he is.  He has worked really hard to be this delayed and he deserves all the credit in the world for his incredible efforts... if they only knew how much he has had to overcome they too would be singing his praises.  

So thank  you Dr. Shah.  Thank you for sticking with us when our days were the darkest and there were no stars in the sky and thank you for always smiling at Sam and for treating us and him with respect and kindness.  Thank you for recognizing how special my child is, for seeing his abilities and not focusing on his disabilities, for knowing how very hard he has worked to get to where he is today and thank you thank you thank you for rejoicing with me knowing what an oh so very special gift we have been given.  

Challenger Baseball

Today was Sam's first Challenger Baseball game.  Challenger Baseball is a little league team for kids with special needs.  There are 6 teams (I believe) in our area with kids of all abilities ranging in age from 6 to 21 years old.  Sam's team is the Cubs this year.  It was about a 50 minute drive to the game but the host team was wonderful and provided Buddies for all the kids so the parents (for the most part) could sit back and enjoy the game... they also gave us hotdogs afterwards.  

We are new the this but the way it goes is each Challenger team member has a buddy (if needed) to help them in any way and to keep them safe on the field.  Each game is 2 innings with every player having an at bat each inning.  Everyone makes it to first base and everyone makes it home.  One base per hit, and although I don't think it was allowed Sam stole several bases.  The last person on each team to bat gets an automatic home run and clears all the bases. Most of the kids played regular positions on the field... Sam took the position of Grounds Keeper/Goodwill Ambassador.  He inspected every mud puddle, every muddy spot, stamped through every line, made sure that the diamond dust was of excellent quality... he rolled in the grass, sat in the grass and made sure that the field was in the proper condition.  And when he was done with our field he tried to inspect the next field over.  I guess you could say that Sam was sort of played the WHOLE field.  He batted the ball off a tee all by himself... we decided that it was best to just stay out of his way... he knew what had to be done and no one was going to take that bat away from him!  Sam was filthy by the time the game was done... he went straight into the shower.  I doubt that I will get the stains out of his pants but he had a wonderful time.  And to think that he was taking his first independent steps late last summer and now he is all over the field!  WTG Sam!

I am actually not sure where he was off to here... but obviously intent checking something out.

Running the bases in reverse... you can't say that he isn't thorough.

A dirty butt means you worked hard in the field.

Checking out the dirt over here...

and over here...

put me in coach... I'm ready to play center field!

safe on first base

there must have been 40 kids on the field... team members + buddies

Swine Flu Tip

#1... Don't do this

The Mischievous Bugs... a musical

Last night was Andrew's debut performance as Narrator 18.  His class were the Termites.  All the kids did great!  Of course I can't seem to download the video clip off my camera of Andrew's speaking part or of his class's Termite Dance but I am working on it.  

waiting for the show to begin

Andrew and Ms. Mitchell.  Andrew loves his First Grade teacher... she ROCKS!

Andrew getting into character in his classroom before the performance.