simple truths

I just viewed this short montage on another blog and I just had to share it.... very touching true story about a young man, who just happens to have Down syndrome, who touched the hearts of so many people with one simple act.  We could all learn something from Johnny the bagger... sometimes it is the little things that make all the difference. Check it out.

The Simple Truths of Service  

it is so very hard to be small

Sean is miserable. Some celebrated milestones just SUCK!  It is day 5 of Sean's teething woes and I just noticed that a second tooth has  just erupted.  My otherwise happy baby has been replaced with a sad, blubbering mess of a child. Somewhere amidst the fever, the coughing, the impressive amount of snot and drooling, the tears, the crying, the red droopy eyes and the tender, swollen gums there is a little baby that just wants to nurse and go to sleep.  

Sam is not quite sure to make of all this.  Sean rarely cries and I think his constant misery over the past few days has taken as much of a toll on Sam as it has anyone.  This morning Sam was just full of piss & vinegar and needless to say he had a less than productive physical therapy session.  However, part way through he turned his attention to Sean. They had a very tender moment.  Sam the protective big brother that he is, gently patted Sean on the back and gave him kisses in is very best attempt to console him...and then promptly removed his socks.  It was the most focused and intentional act of affection and concern that I have seen him display toward anyone.   It was very sweet.  It is not that Sam is not affectionate, he is,  it was just the way he touched Sean with such softness... it was a genuine moment.  

Andrew is doing better, recovering from his sinus infection, and is finally back to school just in time for Wacky Wednesday.  He wore his clothes backwards and spiked up his hair... if I could have put Sean down long enough to take a picture I would have. :)  Hopefully everyone will be back at their peek performance soon.

***special note***

A Nursing Mother's Prayer

OH LORD may my nipples be tougher than the sharpest baby tooth.

some girls need chocolate... I need cookies

happiness is... a box of Girl Scout cookies!

It is Girl Scout Cookie time and I am verging on cookie nirvana.  Some girls need chocolate... I need cookies.  I acknowledge that I have an addiction but unwilling to give up my vice, I have established some hard and fast rules about Girl Scout cookies...yes it helps me sleep better at night.   

#1.  I always buy them.  The kids in the neighborhood know that the NO SOLICITING PLEASE sign on my front door is null and void if they are peddling goodies.  They know my weakness and they are more than willing to bring their wares to my doorstep.  Enablers they are... cute, sweet, big eyed enablers.  Don't they know an addict when they see one?

#2. I only buy 2 boxes at a time.  This rule was put into effect after the Thin Mint invasion of '97. That was the year I bought my stash of yummy goodness only to find out that out that my husband (also an enabler... although he too has been known to polish off an entire sleeve of Thin Mints in one sitting) also fell victim to the Girl Scout Cookie sign up sheet posted on the bulletin board at work.  I think we ended up with 16 boxes of Girl Scout cookies in the freezer that year (that is not counting the boxes we devoured).... hence the need for rule #2.  This way we (Patrick abides by rule #2 as well) can buy from everyone and we don't end up with an embarrassing number cookie boxes to haunt us through the lenten season.  

#3.  Cookies may only be eating with a glass of milk. I know that there is little to no nutritional value to cookies... but I don't care.  Sometimes a girl just needs what a girl needs.  However, in my attempts to set a good example for my children and to not fall too deeply into a glutenous bliss... I always drink a glass of milk with my cookies.  Milk does a body good.  This rule prevents me from avoiding meals in order to polish off and entire sleeve of peanut butter sandwich cookies while standing at the counter making the kids lunch.  It forces me to sit down, relax and enjoy my spoils.  

 

rough day

So Sean had his 6 month well visit with the pediatrician and she of course agreed with us... he is brilliant :)  He is in the 90th percentile for height and 70th for weight and doing all the things a good baby should be doing.  Unfortunately the poor thing got 3 shots.  Sean took them like a pro but as if the day wasn't rough enough... he also cut his first tooth.  You can't see it yet but you can feel the sharp point on his gum... I breast feed, therefore I KNOW!  And he perhaps has his first little cold.  It could just be teething too but he has a runny nose and a tiny cough... it is oh so pathetic but he is still able to smile through it all.  Check out those tired little eyes.  He is comfortably sleeping with Daddy right now and hopefully he will be right as rain tomorrow.

a Beary special surprise

This little bear made my day!!!  It is from UnitedHealthcare Children's Foundation and it came bearing the grant I applied for.... Yippee!  The UnitedHealthcare Children's Foundation is a non-profit charity and was "established to help families whose children have medical needs that are not insured comprehensively to provide coverage for all their medical treatments... and helps families who have gaps in their commercial health benefit plans".   Sam does not qualify for SSI, Medicare or other state/federal programs and usually a child must receive one or more of these type of services to qualify for any sort of aid... however this grant was different and I jumped at the chance.  The grant we received (we submit the bills and they pay... what a deal) will cover Sam's diapers, formula and some medications not covered by insurance....OK I am on the verge of tears...this is soooo wonderful!!!  Sam is 5 years old and he goes through about as many diapers a day as Sean (6months).  And due to the fact that he had nearly all of is large intestine removed because of Hirschsprung's disease he will most likely be in diapers for several more years.... and he is 100% g-tube fed and the special formula he is on is his only form of nutrition.  Neither of these items (diapers or formula) grow on any sort of tree or shrub around here so this grant is oh so very wonderful and will basically cover Sam's diapers and formula for 1 year!!!! Yipee!!! This is just a really blessing and I want to encourage others who might be in the same situation that we are to check out this foundation.  

Sam is pretty happy about it too!

double standard

Check out these thighs!

At this age chunky thighs are beautiful.

so pinchable and squeezable...

a sign of health, growth and good eating...

hhhhhmmmmmm...

So why doesn't anyone pinch MY thighs anymore and say... 

"Oh you are soooo cute"?  

Some things in life are just not fair!

all about the babe

Sean, 6 months

 

Sean is 6 months old! (as of Feb. 17th) 6 months...I know!!! Can you believe it???  Well, he is nothing short of brilliant... of course! He sitting independently without support, eating cereal, rolling over both ways, and trying to get up on all fours. He squeals and babbles and has even learned the fine art of whining.  He delights in his brothers and all things that they do.  He is also very curious and gets excited about exploring new things. We are going to be in such trouble once he starts crawling!  Everything goes to his mouth and I think he is teething. He is a happy, happy baby and an absolute joy.  

Here is a short video (22 seconds) of Sean in his Jumparoo! He really loves this thing but we limit his jumping bliss to about 15 minutes a day.

happiness is...

... obviously 15 minutes is long enough!

cold morning... again

It is 2 degrees this morning and I don't even want to know what the wind chill factor is but it is absolutely beautiful out side ...from the warmth of our home of course.  The glare off the ice was almost too bright to look at but I am thrilled that we have sunshine...finally.  

Thing 1 is bundled up and off to school, Thing 2 is determined to make a mess in every corner of the house, and Thing 3 is already back asleep.  Later this afternoon (once Thing 1 is home and Thing 2 is at school) I will bundle up Things 1 & 3 and head out to the post office.  I have an oh so glamourous day ahead of me...if I play my card right I might just sneak in a shower!     

****special note****

psssst.. Sam has taken a few more independent steps.  Of course when we want him to try to walk he pulls the "stop-drop-and flop" manuver... but when he doesn't think we are watching he will take a few steps here and there.  He is so close... maybe tomorrow will be the day that SAM decides "I think I will walk today...".  Slow and steady wins the race!

as promised... pictures!

Patrick came home yesterday and surprised me with a new camera!  It can do all sorts of fancy things that I will never learn how to do but it is all so very exciting.  You can see I already have the basics down (yes, as you would expect, Patrick read the entire manual already).  

As promised here is a pic of Andrew's toothless grin. 

The tooth fairy left him a gold dollar and he is thrilled.

 Sam turned on the charm for the new camera.

Sean had better things to do.

feelin' the love

Our Valentine's Day was fairly uneventful but I did get some beautiful flowers.  We had a DDC meeting (our local Down syndrome support group) and since Patrick is the president and I am a board member (one of my oh so very important duties is bringing the treats to the meetings) we sorta had to go.  We hired the girl down the street to come watch the kids at the last minute... the sickies are going around (tis the season) and at the moment my kids are healthy so we opted to keep them home.  Well by the time we got home everyone was asleep so we asked the sitter if she could hang around for a bit longer so we could go out for a drink.  Whooo hooo!  This is our version of speed dating!  So out we went. 

 

Andrew's mission for the day was to spread the love and he made cards for everyone.  Deep down he has such a kind and generous heart and I am often times so touched by his compassion.  This was one of the many cards that he presented me with on Valentine's Day.  He wrote all the words with no help, he spelled everything correctly and even added punctuation (oh I am such the proud mama).  

To my Dad and Mom 

Love Andrew Ryan.

The drawing on the inside is of Patrick and I (both wearing our glasses) playing catch.  He said that we really love each other and we are having so much fun playing together with the ball. And we are flashing each other the sign language sign for I Love You.  He said that Dad is the bigger one and I am the smaller one and we are very happy.  OMG how cute is that. 

just a quick update

Well if you checked out my girl boxmaker blog in the past few days you would already know that our camera died.  We have plans to go camera shopping  and if all goes well I will be posting new pics from our new camera by the end of the weekend. In the mean time I am missing out on some priceless photo opportunities and I can't add any new listings to my Etsy shop.  What's a girl to do?

Andrew lost a tooth tonight... one of his big front teeth.  A priceless photo opportunity missed.  He is now sporting an adorable gappy grin.  Pat is working late and Andrew wanted his Dad to see his tooth so he decided he would leave it for the tooth fairy tomorrow. He also made all his Valentine's Day cards for his classmates and teacher.  He cut out hearts and colored them and then I punched holes in them to hold suckers.  They really did turn out cute.  He also made a special card for his teacher.  He decorated the card with repeating patterns.

Andrew: Mom I am making patterns with red and hearts  on Mrs. R's card... she really likes patterns.

Me: How do you know that she likes patterns?

Andrew: Because we do patterns in school e-v-e-r-y-d-a-y.

And then he was so cute...

Andrew: Mom can I wear the church type clothes?

Me: What church type clothes?

Andrew: You know Mom, those pants that aren't jeans and those shirts that button... I want to wear those clothes tomorrow... I want to look handsome for my Valentine's party at school.

OMG... where is a camera when you need one!

In other exciting news, my girl boxmaker blog was featured on Today's Creative Blog  ... whooo hooo! This is quite a nice little honor... sort of like being Queen for the day but without the tiara...but I did get a blinkie!  See...

Sean is living up to his nickname... The Stomach.  I cannot shovel the cereal into his mouth fast enough.  He gets all excited and pounds his little fists on the tray and then grabs at the spoon and pulls it towards his mouth and smiles. 

***note to self***

when allowed to dry, baby rice cereal makes super glue 

Sam is not as hip on the whole thing but I did get one nice swallow (without spitting) and he was very interested in watching Sean . However, when it was his turn, he was more interested in licking the table and wiping it off with his napkin.  Slow and steady wins the race!

 

Going "POSTAL" or going to the post office

Andrew has taken it upon himself to make up his own rules about certain things.  For example he might get up one morning and inform me that he cannot behave while the sun is up... or that he can only breath while Scooby Doo is on TV not some other show... and my personal favorite is that he can only wipe his butt at school but not at home (you have no idea how much this one pleases me...NOT).  Anyway... this happened a few months ago but note worthy all the same.  

To set the scene...

Andrew had recently overheard a conversation that I had with Patrick on the phone concerning him getting home from work late.  We had some place to be and I told him to hurry up and get home or I was going to go "postal"...thinking that was a good universal code for "I am about to open a can of whoop-ass and my patience are limited" and a therefore avoiding the use of expletives around the kids. So jump ahead a few days and I hear Andrew in the bathroom screaming at the top of his lungs...

Andrew: Moooooommmmmm COME WIPE MY BUTT!!!

Me:  Andrew I am busy... you can either wipe it yourself or wait for just a minute.

Andrew: MOM...IF YOU DON'T COME WIPE MY BUTT RIGHT NOW...  I'M...I'M...I'M...  GOING TO THE POST OFFICE!

Ok at this point I about wet my pants I was laughing so hard.  

Mom I have issues.

It is officially -5 below this morning.  So I tell Andrew to wear his snow suit today.  After a bit of whining he complies... this is already after a long morning of feet dragging and finding interest in anything else besides getting ready for school.

Me: What do whiners get?

Andrew: Nothing?

Me: Correct... now get dressed so we don't miss the bus.

Andrew gets his suit on but insists that he needs help with his boots.  Boots that he is completely capable of putting on himself...

Andrew:  Maaaaaammmmm can you help me with my boots?

Me:      Andrew please just hurry up... you are going to be late.

Andrew: ...but Mom... I have issues.

Me: Issues?

Andrew: ...just like I can only wipe my butt at school Mom and not at home (said with a bit of self-righteousness and eye brows raised)... I can put on my boots all by myself at school but I need help at home.  See the difference Mom? Those are issues.

I had an epiphany last night

As many of you know Sam is 100% g-tube fed and except for 2 short months, has been tube fed his entire life. During those 2 months (post heart surgery and before seizures) he was doing a good job with a bottle and we started him on baby cereal. Considering the fact that Sam was born at 27 weeks, has Down syndrome and several other medical complications requiring surgeries and hospitalizations, we were thrilled that he showed little signs of oral aversion (aversions which we were told would be expected). After his open heart surgery, he finally had the stamina required to eat and he was thriving....until Infantile Spasms, but that is another story for another time.

Anyway...Last night I gave Sean cereal for the first time. Sean is almost 6months old and up until this point he has been a boob-man and has refused to take a bottle. Since it appears that I have an ample milk supply this time around, his preference for the breast feeding has not been an issue. It has actually been a nice experience and as you can see Sean is not hurting for a meal. I was slightly concerned that he would not like cereal but as it turns out he really liked it. He got excited and actually tried pulling my hand, holding a spoon loaded with rice cereal, toward his mouth. This child is brilliant!

Sean eating cereal for the first time

OMG... do you think he likes it?

 

And then it hit me... 

 

As far as making strides towards eating solids, Sam was roughly in the same place Sean is now when it became clear that he could no longer take food orally. Jump ahead 4 years and Sam is again at a good point where we can start offering him "tastes" of food.  He is no longer in danger of aspirating food into his lungs and he has a strong enough cough that he can protect his airway.  He currently is diagnosed with severe oral dysphagia... which basically means that there is nothing wrong except he lacks the coordination to move food to the back of his throat and the ability to suck, swallow and breath in the proper sequence.... he needs to re-learn how to do this from scratch.  Through my own research and working with several therapists and doctors I was under the assumption that the best thing for Sam was to try offering him "age appropriate" foods... (ie. it would be better for him emotionally and socially to just lick a french fry than it would be to eat pureed food from a jar of baby food).  Well, we have made little to no progress.  Sam is very interested and will lick tastes of food off your finger but that is about it.  Eating is quite a precise business and Sam lacks not only the fundamentals that we all learned while still infants but the notion that food goes into your mouth and then you feel full.  

So as I am attempting to feed Sean for the first time last night, a light bulb light up over my head.  An Ah-Ha moment...an epiphany if you will!   Sam knows as much about eating solids as Sean does at this point so why not teach them both at the same time???  Sam loves Sean and perhaps he will be a big motivator for his big brother.  I have decided that I will start offering Sam the same cereal that I offer Sean.  I may add some lemon juice or other strong flavor to Sam's in attempt to "wake up" his mouth but my logic is simple... Monkey See. Monkey Do.  

Captain's Log : snow day date 2.6.08

I am being held captive against my will. The Pre-recorded Closing Broadcast was issued at 5:17am... it has been nearly 5 hours since the sounding of the alarm and the tension in the air is mounting. I suspect a full out mutiny before lunch. My first-mate has escaped without incident and I pray that he reaches civilization and is able to report back to me. He promises to return with nourishment that will please our captors.   The natives are restless and they have a crazed look in their eyes.  The storm shows no signs of letting up and all you can see is white, white, white.  I am beginning to doubt that help will arrive in time.  My captors are demanding and my attempts at fake sleeping has no effect on them... they are relentless.  They speak a strange language.  I pretend to understand and that seems to please them.  The little one is ravenous, the middle one has turned on several musical torture devices and appears to be quite pleased with himself, the biggest one has retreated to his lair and no doubt is planning a hostel take over.  That is all for now.  

Please pray for my sanity.

Over and out!

 

Patrick has already shoveled, actually he Woveled, and this is what it looked like a short time later and it is still coming down.

Escape is futile.   

 

GIANT microbes

Tis the season... and besides a few runny noses everyone is healthy at the moment.  But check these out... Giant Microbes!  They make tiny stuffed animals that look like microbes.... 1 million times the size.  I am quite fond of Penicillin, E. coli and Ulcer.  Toxic Mold looks down right angry and MRSA (the super bug) even has a cape... common people this is good stuff!  OK... I  don't get out much but you have to admit that these are pretty funny.  Most people perhaps won't find the sick humor in this that I do but when your child spends as much time in the hospital as Sam does... well you gotta find some humor somewhere.  

Look who is coming to lunch!

Andrew has just informed me that the Meat Eaters are hungry. They have all assembled in the kitchen and are waiting for a feast. I had better hurry up before they start nibbling on my toes!  We are meat you know.

Happy Birthday to Me!

Yup, I was born on the same day that Punxsutawney Phil makes his annual appearance.  I heard that my little ground hog friend did indeed see his shadow this year and promises 6 more weeks of winter.  I too saw my shadow today and it was not a pretty site. If Punxsutawney Phil has any doubts about whether or not his shadow was actually visible he can be rest assured that my shadow was clearly visible from space. 

My boys brought me breakfast in bed this morning.  Star French toast (cut out with cookie cutters), bacon and coffee...and they even warmed up the syrup.  I am so spoiled.  Last night Andrew made some drawings and messages, blew up some balloons (that I tied) and decorated the head board of my bed so that I would wake up and be surprised on my birthday.  I was not supposed to notice last night when I went to bed and was given orders to be surprised when I woke up.  Too cute!  

My boys took me out to dinner tonight too.  We went to the Olive Garden... more adult friendly than Chuck-E-Cheese, better atmosphere than McDonalds, loud enough that Sam's singing won't bother too many people and yet still a place where we can order a meal that Andrew is willing to consume.  We all ordered and everyone was behaving and then the food came.... Let me set the scene...  There really wasn't enough room for 2 high chairs (one for Sean and one for Sam) at our table and still keep everything out of Sam's reach so we thought Sean would be safer in his infant seat on the floor next to me.  Or so we thought!  He was being quiet and thinking about going back to sleep... always the good baby that he is.  So the food comes and as the waiter lifts the Andrew's bowl of buttered noodles off the tray it slips out of his hand and lands on top of Sean.  The poor waiter was mortified.  You could almost hear him saying to himself as he lifted the plates... "don't drop this on the baby...don't drop this on the baby...".  Well accidents happen and Sean was fine... but if he grows up hating noodles we will know why.  The rest of our meal was lovely and the boys got a kick out of the entire wait staff singing to me some loud and obnoxious version of the Happy Birthday Song.  

My boys (all of em) are asleep now after a long day of giving me the special treatment.

 

Snow Day!

The snow started coming down last night and it just kept coming.  We must have gotten 6 inches last night at least. It is really quite beautiful outside at a delightful 27 degrees.  This is quite understandably a welcome change from the -24 below wind chill factor we endured earlier last week. The weather has been crazy and few days ago it actually got up in to the low 40's. You can see some buds started coming out...then wham...winter is back again.  

OK... so what is this you ask??? This is my husband and his new toy... The Wovel.  This little beauty is designed to take the strain of shoveling off your back.  Pat says it works.  The Neighbors think it is odd but they don't say much because Patrick shovels their driveways too.    

Oh we had to include an action shot!  Just look at him go...

 he is a woveling fool! 

Go Pat Go!

**special note**

The boys have a snow day today and are home from school. It would appear that, without my knowledge, they have been doing expresso shots all morning. I will probably lose my mind today... I have already decided.