Update...

It's most likely not an infection -- the quick test at the office indicated nothing icky -- but the lab will test for both bacterial and yeast infections...we should have the results Friday (I am assuming everything is closed on Thanksgiving).

The doctor also felt Jack's belly and said he felt really, really constipated and we're to double his dose of miralax until we achieve loose-to-runny style diapers, to "clean him out".  I can only imagine the look on Jack's teacher's face after she reads my note this morning!

Happy Thanksgiving :)

Thanks for being my friends :)

Love,

Angela

Heading to the Dr.

Jack's got funky smelling pee again.  Another catheter and another round of antibiotics I'm sure.  Will keep you posted!

Random Things...

We had our Wilhelm Thanksgiving at our house this past weekend!  It was a lot of fun and our dinner was yummy!  Pa Pa, Jan, Uncle Ben, Julia, Jack, Morgan, and Jason and I had a good time talking over turkey!  Everyone brought a dish or two and let me tell ya, that was a great thing!  I tried traditional stuffing for the first time and it was great -- good job Pa Pa and Jan (although I know there was a tiff in the kitchen, lol it was worth it!)

Jack has been doing great at school.  He got his "report card" (progress report) and I am SO PROUD!

• Use 20 new words 98%
• Use a greeting/farewell 100%
• Draw a cirlce, square and triangle 73%
• Use non-dominant hand (right) to stabilize objects (books, toys, paper, etc) 100%
• Correctly orient a scissors to paper 93%
• Insert coins into slot 100%
• Independent functional mobility in school environment 70%
• Propel wheelchair 20 feet 33%
• Pull to stand at walker 77%
• Stand independently for 8 seconds 100%
• Use walker for 10 minutes at a time 70%
• Name shapes and colors 71%
• Rote count to 10 41%
• Identify letters in his first name 44%

When we wrote these goals at his IEP meeting I really had no idea he'd be close to mastering most of them within the FIRST QUARTER!  These are goals written for the ENTIRE YEAR!!!  His teachers and the staff at the school are truly angels on earth.  I could not be any happier with his placement or how things are going.  It feels really good to say that, considering how much preparation and planning and worrying went into this transition.

We are heading to Grandma Linda's for Thanksgiving this year.  I am really starting to get in the holiday spirit!  I even pre-planned and printed my black Friday shopping list -- I'll let you know how I make out!!

I hope everyone has a very HAPPY THANKSGIVING!!

Feeling Much Better!

Jack is feeling much better after last week's UTI.  He's back at school after being home Wed., Thu., and Fri. last week.  He's still on his antibioitc -- we still have a few days left of that.

Jack's new wheelchair is HERE!!!!  We LOVE it!  He sits so well in it and it has all of the extras we've been waiting for!

I didn't realize just how heavy it would be though.  WOW.  Everyone used to comment on how light his previous chair was -- but since I had no reference I really didn't get it!  It still fits in the back of our van the same way the other one did and I am very thankful for that.

We are in the process of getting a quote on a ramp and new front porch for the front of the house.  It's something we knew we'd be facing and we feel it's time -- especially with this new chair.

Jack is very proud of his new wheels and loves when you tell him "Niiiiiiiiice wheelchair Jack!!!"  Of course this is the same kid who likes when you tell him he has "niiiiiiice teeth" or "niiiiiiice hair" he loves a little attention now and then ; )

Morgan had her 18 month check up last week.  She's doing very well and is on target for her age as far as growth and development.  I am simply not used to "easy" check ups without a list a mile long for the doctor!

  

Here she's modeling her new winter coat!  We were on our way to the library -- where she goes to not be quiet, lol!  Thankfully they have a great kids section with books, toys and blocks.  She makes friends very easily and doesn't let anyone get a word in...we'll have to work on that!  j/k...

Our October Pictures are ready -- lots of fun pirate poses!

Catching up is hard to do!

Oh, I don't know how to say sorry to everyone!  I've been reading my blogs each and every morning...but just haven't had the, I am not even sure what, to post.

Jack's behavior has been really terrible for the past week.  I now know why.  He woke up early this morning and didn't seem to be feeling well.  I decided to keep him home -- and I am glad I did.

I decided to call the pediatrician because we noticed Jack's pee smelled really, really bad and perhaps he has an infection... 

He was really down and out and slept most of the morning.  He woke up and ate, and then at 11 am he had a small seizure lasting about 45 seconds.

Then he was really pale and sickly looking.  They got us in and out at the dr's office and confirmed (via straight cath) he does have an infection.  They are starting him on antibiotics and will call us when the culture comes back for the lab.  I know some of you remember the ordeal back in 2007 when he went round and round with a nasty kidney infection and ended up hospitalized to finally get rid of it!  I really, really hope this is done after one round of meds!

I hope you're all doing well!  I do have so much else to write about -- especially school!  Jack is doing amazingly well and I couldn't be happier with his placement.  (((hugs)) to you all!

A Pirate Invasion! (pics)

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?