TOBI is in the house!

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

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

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

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

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

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

there's a chill in the air...

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

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

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

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

Mitten Cookies

Cream together:

1 cup butter

2/3 cup sugar

Beat in:

1 egg

Add:

1 tsp vanilla

2 1/2 cups flour

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

Frosting:  

3/4 cup confectioners sugar

1 TB butter

1 TB milk

1/2 tsp vanilla

1/4 tsp lemon juice

a few drops of food coloring of your choice

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

Notes from the Deep End

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

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

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

Notes from the Deep End

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

-JenEndyB

mother to Nicholas (3/31/05)

I will take 1 banana grove to go, please!

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

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

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

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

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

so here goes... enjoy

Magic (disappearing) Banana Bread

Mix thoroughly: on medium speed


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


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


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


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


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


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


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


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


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

Eat and enjoy.  

rare sighting: 14 years in the making

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

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

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

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

and one month later...

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...

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.