Recipe of the Week!

Gemelli with Cream, Prosciutto and Peas (Gemelli con Panna, Prosciutto e Piselli)

I made this tonight and WOW is it tasty!  It was from the back of the box of Barilla Gemelli Pasta.  This one is NOT low in fat or calories...oh well, everything in moderation, right?

Back to regular scheduled posting really soon -- PROMISE!

Ingredients
1 box Gemelli pasta
1/4 cup unsalted butter
4 ounces prosciutto, cut into thin strips
1 small roasted red pepper, peeled, seeded, chopped (may substitute jarred, drained roasted red pepper)
2 cups heavy cream
3/4 cup frozen peas, thawed
to taste salt
to taste freshly ground black pepper
1 cup freshly grated Parmigiano Reggiano cheese


MELT butter in medium saucepan over low heat. Continue heating until light golden brown in color, being very careful not to burn.

ADD prosciutto and red pepper; cook 1 additional minute, stirring frequently.

STIR in cream and peas. Bring mixture to a boil over medium heat. Reduce sauce by two-thirds, stirring frequently, approximately 8 minutes.

COOK Gemelli according to package directions; drain and return to pot

TOSS sauce with pasta until pasta is coated. Season to taste with salt and pepper. Gently toss with cheese. Transfer to serving platter

Her Name is Morgan, She Likes to Dance!

Hope this makes you laugh!

It was 90's weekend on VH1

We have no idea where she gets her moves...

Right now...

I am sipping hot tea.

Those who know me know I am coffee person.

Unless I'm sick.

Sore throat, sneezing, aching shoulders, swollen glands -- what a way to start the day.  It also means I will have to cancel our weekend away with Kris and Alicia...

Also, why don't parents (ahem, especially moms) get to call off sick?

I am going to go keep the couch warm while sweet Morgan plays in her pack and play and laughs every time I "ACHOO!"

Up to...

$205 

for the 

Making Strides Against Breast Cancer Walk!!!

THANK YOU!!!

Goal!

The little widget isn't showing Jason and Morgan's latest progress on the donations towards the Making Strides Walk -- in just 24 hours they raised $135!!!!!

Thank you so very, very much from all of us!!

*****EDITED TO ADD -- Jason and Morgan are up to $185!!!*****

Making Strides Against Breast Cancer

Making Strides Against Breast Cancer - 2008-2009

This weekend, Jason and Morgan will be walking in the Making Strides Against Breast Cancer walk as part of the D&H Distributing Team. (Jack and I will be out of town visiting Kris and Alicia -- but we will be walking with them in spirit!) What a nice way to spend time with your daughter -- please help us raise our goal of $100 to fight for our mothers, sisters, daughters, aunts, teachers, mentors and friends.

September 2008 Photos!

.

HERE!

Recipe of the Week

Jalapeno BBQ Burgers

Jason makes these burgers and they are SO YUMMY!  You can substitute a small bell pepper if you aren't a fan of hot peppers.

Ingredients

3 or 4 jalapeno peppers, coarsely chopped
2 pounds lean ground beef
2 tablespoons garlic powder
2 tablespoons chopped onion
1 tablespoon ground cumin
1 tablespoon chili powder

1 egg
½ cup Italian seasoned bread crumbs
½ cup barbeque sauce
Salt and pepper to taste.

Cooking Directions

In a large mixing bowl, combine all ingredients. Mix until the seasonings are uniformly distributed through the meat.
Create 4 large ½ pound burger patties.
Refrigerate one hour until firm.
Heat grill to 350 degrees, or medium flame.
Place burger patties on the greased grill and cover. Cook approximately 5 minutes each side.
Toast buns, if desired. You only need a couple of minutes to toast them.
Serve the burgers on the buns with your favorite condiments.

Mitochondrial Disease Awareness Week

This Week is Mitochondrial Disease Awareness Week.

I would like you to visit Colleen's Blog and meet her wonderful family.  I hope to help raise awareness of Mitochondrial Disease for Kennedy and so many other kids.

Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection.

www.umdf.org

Recipe of the Week

I am proud to say I came up with this one on my own!  It was great and we made use of left overs that would normally have sat in the fridge!

Italian Style Left Over Meat Loaf Casserole

4-6 slices fully cooked meat loaf
1 14 oz can diced tomatoes lightly drained
1 can green beans drained
1/2 cup shredded mozzarella cheese
6 servings prepared mashed potatoes
Sprinkle of Italian seasoning (or oregano)

Preheat oven to 350

Grease casserole dish
Crumble meatloaf in a single layer on bottom of dish
Pour diced tomatoes over meat loaf
Add green beans
Sprinkle 1/4 cup cheese
Spoon mashed potatoes on top and spread evenly
Cover with remaining 1/4 cup cheese
Sprinkle lightly with Italian seasoning

Bake uncovered for 35 - 45 minutes or until heated through and cheese starts to brown.

Ideas? Adapted Mouse?

The following is an email I sent to Jack's teacher this morning!  I need your links, info, comments please!

I was wondering if you had any information on a suitable computer mouse (or switch/button) that would be good for Jack to use with simple computer games. He loves to play a few online games (like peekaboo on sesame street -- where you can hit any key on the keyboard to play).

I was browsing some special needs catalogs and came across a few games like this:

Language and Communication

Lots Of Action

Kids love amusement parks. This great program gives you 16 errorless activities that provide hours of fun and teach cause and effect, scanning, and visual tracking. Animated activities include a ferris wheel, motorcycle stunts, popcorn machine, dolphin show, bumper cars, car wash, roller coaster, and much more. Use a single switch, two switch step scanning, or touch screen to start the action. Each activity can be played with 1, 2, or 3 segments. No prior knowledge or understanding is needed. Chronological age is 9 mos-4 years. CD-ROM:Win.

Have you come across a switch that is just one or two buttons? Before we would purchase something like this I would like to ask around to see if anyone can show me an example of a mouse or switch that would work for Jack!

Any information would be great!!

Thanks,
Angela

PS -- feel free to forward this email to anyone else who may know of something that could help!

Dancing Machine...

Jack loves to dance -- this is Lil Jon "Snap Yo Fingers" a silly song my kids LOVE! Never mind what Morgan is wearing -- it's one of Jack's under shirts she pulled out of his drawer and wanted to put it on!

Neurosurgery Check Up

Jack had his yearly check up with his neurosurgeon yesterday.  I braved it on my own with both kids...I packed a bag full of snacks, toys, drinks, and diapers and we left around 9:00 am.  

Jack was instantly in a bad mood when we got to the waiting room.  Morgan ran around and made lots of friends while I tried to chase her and keep Jack calm.  It just wasn't happening.  He nearly busted out of his wheelchair a few times -- when he's mad he's soooo strong!  Luckily our wait wasn't too insanely long!

It's always nice to see this doctor -- he's the only dr. left on Jack's team that has been with us since Jack's birth.  I explained the situation and how Jack has really emotional days filled with crying, head banging, and screaming but then can go several days and have none of those things happen.  It concerned him enough to think it could be shunt related to send us for a CT scan that same day.

We got the orders and went downstairs to the imaging center...and waited...and waited...and WAITED.  It was horrible.  I thought of calling Jason and begging him to come over and help....but I didn't want to do that to him and of course the minute he'd get there would be the minute they'd call us back.  There was something with a form or paperwork -- they were working on getting it straightened out.  I though about leaving but knew we couldn't.  An angel of a woman (I didn't even learn her name) befriended Morgan and played with her so I could try to calm Jack.  It wasn't happening.  I thought so many times "I can't do this!!" but of course there's no choice!  Since the room was closing in on us, I took the kids out to the hall way.  Morgan had a blast running up and down the hall and Jack was playing some kind of game with the vending machine!  It's something I really don't want to repeat for a very, very long time.

Several hours later it was Jack's turn.  I could not go in with him because they do not allow children in the CT scanning area.  The brave boy did so well.  I am so proud of him!  He held still and listened as the machine did its scanning.  It took just a few minutes and we were finally SPRUNG!

Both kids fell asleep on the ride home and I was just trying to shake the stress.  I stopped once because I though Jack was starting some seizure activity -- but he was only sleeping.  We got home around 4:00 pm and the Jack napped while Morgan played and watched the Backyardigans.  It's no wonder she wanted to relax -- I think she ran several miles yesterday!  lol!

So I called this morning for the results of the CT scan and the dr. said his ventricles look great and even a little smaller than the last scan.  So it's good news!  He said if we can't figure out what's going on with Jack we should call him and he'll get us in for another scan during one of the episodes...he really doesn't think it's shunt related though.

Jack was excited to go to school this morning and we had to rush, rush, rush because we overslept!  We managed to catch the bus just in time!

So Morgan and I are taking it easy today and tackling the mounds and mounds and MOUNDS of dirty laundry.  How do 4 people dirty THAT many clothes???  I will never know...

Discount Shopping

Just ask anyone who knows me -- I always have my eyes out for a deal!  I love hunting for bargains at discount stores.  We live two blocks away from Big Lots and I can often be found traipsing the aisles looking for things for the family...

I have to go prepared though, it's so easy to load the cart with "junk" and end up spending money on items we really do not need!  I also pay attention to size and quantity and have prices memorized from our local walmart and grocery stores to really be sure it's a deal and worth it! Oh and I always check the expiration date on packaged food items.

I have consistently hit the end of season clearance racks at Kohls for the kids' clothing for the following season.  I've guessed right on almost everything so far!  Last spring I bought several hundred dollars worth of winter clothing for Morgan for this winter and next and spent maybe $80.  It helps that I went with a 30% off coupon as well.

I recently tried a store called Aldi's -- I wasn't impressed but will return for cereal and canned items on occasion.

Things I check regularly for are:

Cleaning products

Cereal

Diapers

Wipes

Bath & Beauty Items

Snacks

Seasonal Items (just got Jack's costume for $10)

Toys

So, what kind of bargains have you scored lately?

Best Days!

Wow, Jack's had two of the best days yesterday and today!

He woke up with a smile -- and gave me lots of hugs and kisses...he played before breakfast and cooperated with getting dressed and sat very patiently waiting for the bus.  I think it helps that the mornings have been gorgeous here and we sit outside waiting for Miss J. to come get him.

Today at school he played "Classmate Bingo" and loved it!  He made a story book about the weather (using PECS symbols)  He said all of his teachers' names!! (Lo lo, Tish, Je, Tef) used his words all days long and knew it was snack time before they announced it (it truly shows he's learning the routine and paying attention to cues).

He had OT and Vision Therapy today.  His OT said he did some sensory input with him using a "ball bath" I can only imagine Jack LOVED this -- the note said he enjoyed it.  Jack also did well with his vision teacher and did a lot of nice things for her today.  Although he wasn't keen on naming colors today -- there's always another day!

It does my mommy heart good to hear how he's really getting into the swing of things and when he has good days, they are REALLY good.  I hope they are here to stay!

Recipe of the Week

I love sharing recipes -- the internet is GREAT for this! I thought I would share some of my favorites and hope you'll do the same!

Today I am making: Crock Pot Bratwurst and Cabbage

Ingredients:

1 pound bratwurst
1 large onion, chopped
1 small head cabbage, coarsely chopped
4 medium potatoes, cubed or sliced
1 can cream of chicken soup
1/2 cup apple jelly
1 tablespoon wine or cider vinegar
2 teaspoons caraway seed
salt and pepper to taste
Preparation:

Brown bratwurst; drain well. Place cabbage (steam or boil the cabbage to wilt if using a 4-quart or smaller Crockpot), onion, and potatoes in the slow cooker/Crock Pot; place bratwurst on top. Mix remaining ingredients and pour over all. Cook on low for 8 to 10 hours.

Ups and Downs...

I've been slacking in tracking Jack's behavior via the blog -- I guess because part of me feels bad for needing to share the not so great moments...but that's what this journey is!

This weekend was very trying.  We've discussed all sorts of reasons and tried to figure out if there were any specific triggers to those days where he's completely off and banging his head and shrieking with frustration and anger.  One thing we've noted is bowel habits.  When he's constipated he's more prone to meltdowns...has this resolved the issue?  No, but if we can really stay on top of keeping him regular it may, just may help ease what's been going on.  The other thing we've noticed is the behavior gets worse after an increase in Keppra.  We have two more increases to go -- it will take us into the first week of October.  Then, a few days after an increase, like today he has one of the best days...his teacher's note from today made me smile from ear to ear.  He enjoyed himself, ate his entire lunch and wanted to participate in the learning activities.

So we continue to wait and see.  Hopefully once he's on a full dose of Keppra and weaned off Tegretol we can get some normalcy back into Jack's day.  We do see the neuro in October for a follow up and to get a weaning schedule for the Valproic Acid.  Wouldn't it be awesome if this kiddo could take just one seizure med instead of three?  Fingers crossed!

Oh, and I know -- wrong kiddo in the walker, lol!  I have yet to have Jack and the camera at the same time!!  The picture of Jack is from this morning waiting for the school bus!

PS -- DHL came to pick up the wrong walker on Friday.  I have yet to see a refund from spinlife.com and have not yet heard back via email when I asked the status this morning.  This is the last piece of the mess...I will keep you posted!

Edited to add -- I had an email from them -- my money will post in my account this week.  I'll be very relieved!

Update on Walker Woes!

So finally, I talked to someone from spinlife.com  via email who was able to issue return authorization in the span of an hour and a half.  The shipping company has arranged pick up for this afternoon and the last bit is waiting for my refund to show up in my bank account.  Once this happens the issue will be closed and not spoken of again!  lol -- thank goodness.

You know it's hard enough sometimes doing what we do with special needs kids -- getting equipment so they can walk, talk, sit or basically function shouldn't have to be an issue.  Unfortunately things happen.  Paperwork gets lost, the ball gets dropped or things get piled on to someone else as their problem.

So much progress has been made today!  And as promised, pictures to come!!

Still No Refund or Return Info for Walker

I finally got totally fed up and decided to email the manufacturer directly since my emails are now going unansered from the vendor.  This is the email I just sent:

My item was ordered on Aug. 30th. I received the wrong size on Sept. 2nd and contacted customer support at spinlife.com via telephone immediately on Sept. 2nd. I was told a the correct item would ship and I would be given return authorization for the old item in a timely fashion (either that day or the next). On Sept. 8th I was told via email spinlife needed the serial number/part number of the item before the Return Authorization information could be obtained. I gave the information via email that same day. I have given everything requested, a new item was not shipped as stated so I canceled the order and wanted only the return authorization (for the wrong item to be shipped back) and to obtain a refund. I really need to return the item for a refund as soon as possible. What I am requesting is an immediate refund and return authorization from spinlife.com, however now my emails are going unanswered.

The item to be returned (it was the wrong size for my son -- I ordered the youth size and the young adult size was delivered) is the Nimbo Walker item number KA4200N young adult size in midnight blue. I would appreciate assistance in obtaining return authorization and a refund as soon as possible. I ended up ordering the correct Nimbo walker from a different vendor and it arrived as described.

Sincerely,

Angela Wilhelm

Can you believe this?  They are just ignoring me and hoping I go away?  This is rediculous!  So please know what you're getting into if you order from spinlife.com.  My advice is DON'T!!!!

Will keep you posted.

On a good note, like I mentioned in my email above, the new walker came from the new vendor and is FABULOUS!  I will post some pictures later!!

"Reading"

Okay, well I know Jack isn't technically reading -- but his symbol recognition is really coming out! He names packages of food by the logos especially cereal.

This morning I was driving him to an appointment and we were going about 25 mph past walmart. You can't see the parking lot or the building, just the sign and he said "Store...balloon!" In fact we've always called it the balloon store because he gets one of those smiley balloons nearly every trip!

He also knows McDonald's (he'll start to sing old Mcdonald had a farm, and then ask for fries and soda!).

This is HUGE because symbols and abstract pictures are a huge part of using a communication device or picture schedule like PECS. If you would have asked me even a month ago if Jack could recognize symbols I would have laughed you out of town and said "no, we must use real photographs."

This is simply a huge milestone and I can't wait to start cutting out more logos!!!

Jack had his best day in a long time yesterday.  The school sent a glowing report on how he did during class -- science was his favorite subject, and he walked all over the school indoors and outdoors with his walker during PT.  He was happy and attentive and it continued into the evening as well.  He didn't cry or meltdown once.  It was the old Jack Riley!  I pray it stays or at least continues in this direction!