I'll take a Guanfacine Mocha Latte to go please

On Tuesday we saw Sam's neurologist.  Dr. Shah has been a beacon for us during Sam's dark Infantile Spasm storm and has thrown us more than one life jacket.  He is calm and compassionate and he truly understands what an incredible gift we have been given in Sam's seizure-free status and his progress.  Sam's delays are significant but he knows how hard Sam has had to work to be where he is today.  I joke that Sam has worked so very hard to be THIS delayed... and we are so very proud of him.  Slow and steady wins the race.  Dr. Shah knows that everything that Sam is capable of is icing on the cake... his initial prognosis was grim at best and he told us to prepare for the worst but pray for the best.  And Sam did get the best outcome.  Although is delays are considered moderate to severe now, when he was first diagnosed with IS we were told that being able to maintain eye contact for a 3-4 seconds would be a difficult goal.

Sam is now nearly 8 years old and has been seizure free for almost 7 years and free of HYPS for 6 years and off all seizure meds for 5 years.  AMAZING!!!  Sam is now walking, running, jumping, climbing stairs, matching pictures, making meaningful choices, had definitely likes and dislikes, is naughty, rides a bike and many more things that we never dared hope for him to be able to do.  And many people are completely clueless to how incredible Sam's IS success story is... and how rare.  He truly is Blessed and Lucky.

However, IS has taken a toll.  Sam's brain, in a sense, has had to re-wire itself and find new pathways to send messages.  So for Sam to get from A to B... he must go from A to Z to Q to B.  It is the long way around and sometimes he gets there and sometimes he gets lost along the way.   Unfortunately for Sam, he sometimes gets distracted somewhere between Z and Q.  He has been having some issues at school and sometimes he hits or exhibits other poor choices.... impulsiveness,  lack of focus.  This is nothing new but it is often difficult to assess what is a "problem" and what is developmentally appropriate naughty little boy.

So after much discussion and hand wringing and contemplation, we a started Sam on Guanfacine (or Tenex)

Guanfacine (Tenex) was originally developed as, and is still used as, a mild antihypertensive. Like some other antihypertensive drugs, Guanfacine (Tenex) regulates levels of the neurotransmitter norepinephrine; in the prefrontal cortex of the brain, it decreases sensitivity to distracting stimuli, and it therefore may help with focus. For this reason, it can be helpful in reducing ADHD symptoms, either alone or in combination with stimulants.

I have mixed feelings about this.  This topic has been discussed and brought up a lot over the past several years... a topic that has never left a good taste in my mouth but one that I knew I would one day have to swallow. On one hand I feel that Infantile Spasms (not to mention everything else) has robbed Sam of so much and if this will help him make those connections faster and help him to be less frustrated and more focused... fabulous.  On the other hand I hate adding another med to Sam's daily routine.  On the upside... the side effects are very minimal (virtually none) so there really is no down side in trying.  Sam is on the cusp of really grasping so many new things and I can't help but wonder... if he had just a wee bit of help could he finally complete some of those loose connections in in brain and unlock a few more doors???

Am I wrong to ask for more?  Considering the gift we have already been given... is it wrong for me to say "Thank you God for the miracle... now may I have another?"  Is it too much for me to hope for that one day Sam might learn to read, or be potty trained, or have a conversation with me about the weather ???  Am I selfish for wanting more than I was ever promised?

Look at those faces and tell me that I am wrong for wanting so much for them.

So we will see how it goes....   

and then there were TWO!!!!

Please follow the link to my friend  Leah's blog... she is doing something amazing and changing lives forever.  Pop over and read her story and become part of her family's journey by helping Leah and her family bring these two very special children, Axel and Ianna,  home to their forever family (and you could win an iPad).  

I will take "Yummy things from Rae's kitchen for $200" please.

And the answer is... Seriously the best meatloaf recipe ever!

Rae's Fabulously Delicious Meatloaf

Combine at least 2 of the following meats to = 3lbs (ground turkey, lean ground beef, ground venison, jimmy dean sausage (any variety))

*** my favorite combo is 2lbs lean ground beef and 1lb jimmy dean sausage (sage, low-fat, spicy... you choose)

1 cup tomato ketchup (have used salsa in a pinch)

2/3 cup V8 juice (can you spicy if you choose)

4 eggs

1 1/2- 1 3/4 cup bread crumbs (ok to add a bit more if mixture seems a bit to "wet")

4 tsp prepared mustard

1 packet Good Seasons Italian dressing mix *dry mix

Mix everything thoroughly in a large mixing bowl.  Seriously, I am pretty sure that you are supposed to beat the eggs first and add all the ingredients slowly... but I just toss them all in and in no particular order and use my hands to mix it all together.  Turns out great every time.

Press meat mixture into 2 loaf pans (yes... that is one for dinner and one for sandwiches tomorrow!)  

Topping (optional)

mix 1/2 cup ketchup OR chunky salsa

1 tsp prepared mustard

4 TBS brown sugar

Mix it all together and spread on top of meat loaf.

Bake at 400 degrees for about 1 hour (check at about 45-50 minutes and drain if needed... my oven sucks so please note that your cooking times may vary... I usually end up cooking it for about 1 hour 10 minutes or so).  The meatloaf will start to pull away from the sides.  The sides and the topping will probably look a bit burnt... but it is not... it is just the sugar carmelizing... YUM!  Drain as needed and let rest for about 5 minutes before serving.  

enjoy :)

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

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

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

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

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

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

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

4 tbs butter

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

3/4 cup light brown sugar

1/2 cup ketchup

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

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

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

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

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

It's the Great Pumpkin (puree that is)

Pumpkins, pumpkins everywhere!  

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

Yummy Pumpkin French Toast

beat together:

6 eggs

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

1 TBS vanilla

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

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

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

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

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

Yummy Pumpkin Bread

mix together:

3 cups flour

2 cups sugar

1 tsp. cinnamon

1/2 tsp. cloves

1 tsp. nutmeg

1 tsp. baking powder

1/2 tsp. baking soda

1/2 tsp. salt

1 cup applesauce

3 eggs

2 cups pumpkin puree (from the can)

1 TSP vanilla

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

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

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

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

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

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

What do you see?

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

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

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

TOBI is in the house!

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

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

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

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

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

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

there's a chill in the air...

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

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

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

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

Mitten Cookies

Cream together:

1 cup butter

2/3 cup sugar

Beat in:

1 egg

Add:

1 tsp vanilla

2 1/2 cups flour

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

Frosting:  

3/4 cup confectioners sugar

1 TB butter

1 TB milk

1/2 tsp vanilla

1/4 tsp lemon juice

a few drops of food coloring of your choice

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

Notes from the Deep End

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

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

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

Notes from the Deep End

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

-JenEndyB

mother to Nicholas (3/31/05)