Merry Christmas!

Merry Christmas 2008

More?

Sometimes I think it's a crazy idea.  We have our hands full already, don't we?  The number of kids should not be more than the number of adults in the house, should it?  We've talked about more kids and a recent post on "to the Max" really said a lot of what I am feeling!  

One thing I truly know is I won't become pregnant again.  We've been through the death of a baby, a baby born on the edge of viability, and a baby that came 6 weeks early.  I've had two classical c-sections which puts me at risk for uterine rupture...on top of the fact that precipitous preterm labor seems to be what my body wants to do when it's pregnant.  Lifting -- Jack is over 40 lbs and his wheelchair is close to 100 lbs.  Just not an option for me while pregnant!

My heart swells when I think of another baby.  A baby grown in our hearts and in another mommy's belly.  Over a year ago we started researching adoption.  With all my heart I feel this is what is meant for us.  This is by no means an announcement of any sort -- but just getting it out there, in the open so we can talk about it.  We've gathered information on all types of adoption and found an agency in our state that we'd like to meet with when the time is right.  

I've been packing away the baby items as Morgan grows.  I stare at newborns on TV or in the mall with a lump in my throat.  We really could have another baby some day!  There are days when it's simply crazy at our house and I wonder if we could do it...but we have room in our hearts and love to give.  I love being a mother to my children and I know Jason loves being a daddy too.  

Making Cookies!

A few weeks ago I decided it was time for Jack to learn the fine art of cookie making -- and he happily agreed!  He loved every minute of it -- except actually eating the finished product, but Morgan happily devoured Jack's first sugar cookie!

INGREDIENTS

2 3/4 cups all-purpose flour
1 teaspoon baking soda
1/2 teaspoon baking powder
1 cup butter, softened
1 1/2 cups white sugar
1 egg
1 teaspoon vanilla extract

DIRECTIONS
Preheat oven to 375 degrees F (190 degrees C). In a small bowl, stir together flour, baking soda, and baking powder. Set aside.

In a large bowl, cream together the butter and sugar until smooth. Beat in egg and vanilla. Gradually blend in the dry ingredients. Roll rounded teaspoonfuls of dough into balls, and place onto ungreased cookie sheets.

Bake 8 to 10 minutes in the preheated oven, or until golden. Let stand on cookie sheet two minutes before removing to cool on wire racks.

6 Appointments in 3 days...

This week has been a marathon of illness and appointments!  I hope our recent rounds of prescriptions kick this bug OUT OF OUR HOUSE!!!  All 4 of us have been diagnosed with an upper respiratory infection and all 4 of us are now on antibiotics.  Fevers, coughing, sneezing, vomiting, clogged sinuses, headaches abound!  Jack was first, then Jason, then me, and now Morgan.  Fingers crossed we are all well soon.

Jack also had his orthopedic surgery appointment yesterday and all looks GREAT!  He had a hip x-ray and his hips look "perfect" according to the dr.  We only need to see him again in a year -- YAY!  Jack is scheduled to see the physiatrist at the end of the month for another botox evaluation.

School is going well.  Only two days left next week then it's Christmas break!  I haven't had a chance to rest and we're all not feeling well so I must get better soon so I can get wrapping and gifting!

Will update really soon!!

The Bethesda Mission

As a part of "D&H Cares" Jason and I are collecting items in need for the Bethesda Mission in Harrisburg througout the month of December.  My mom and Paul just dropped off a huge box of toiletry items and it has me very excited to collect more items for the mission.

On their website they list the following items of need:

MEN’S SHELTER
Gloves/hats
Socks
Shower shoes
Underwear, sizes 34–38
New sweatshirts
Prepaid phone cards
Watches

Toiletries

MEDICAL CLINIC
ACE bandages
Insoles
Antifungal cream
Fingernail/toenail clippers
Pocket size tissues
Daily pill organizers
Foot & body powder

FOOD SERVICES
Plastic ware
Napkins/paper products
Ketchup
Orange juice
Mozzarella cheese
Beef
Eggs/milk
Vegetables
Coffee
Disposable gloves
Cafeteria trays

YOUTH CENTER
Gift cards to A.C. Moore/Michaels
Toys
Sports equipment
Wii video game system & games

Toiletries

WOMEN & CHILDREN’S SHELTER
New robes/slippers
Paper products
Diapers, sizes 3–5
Dish detergent
Dish towels
Window cleaner/vinegar
Cheese/crackers
Fruit and fruit juices
Wrapping paper
New towels and washcloths

Toiletries

TRANSITIONAL LIVING
Toilet paper
Paper towels
Twin sheet sets

Toiletries

Please let me know if you'd like to add to our ever growing box!  Email me at angwilhelm@gmail.com or call me!

Lots of love,

Angela

Negative

Jack's chest x-ray is all clear.  No infection!  We are to just treat the fever if needed and so far today he's been fever free!  Morgan is really feeling icky...she's actually still sleeping and that's really rare.  She's usually up early and ready to play.  Last night she sat with Jason and only got down to dance for one song...then it was right back to cuddling....hopefully the antibiotic will kick in soon!

Oh my!

Winter germs stink.  Jack had to go for a chest x-ray -- results should be in first thing in the morning.  Morgan has a double ear infection.  I am utterly exhausted after our outing today.  I love Jack's new wheelchair ut it's as heavy as a house.  Okay, I am making that last part up -- but it's really heavy!  The children did not feel well, they were feverish and anxious to be at the doctor's office.  Jack kept asking me if they were going to look at his pee pee...poor kid is afraid of the catheter test -- I don't blame him one bit!  I told him we were there to make his cough all better and he seemed to relax a bit.

The x-ray tech was really nice but a little out of it.  I told Jack we were going to take a picture of his "belly" and the tech was confused and said "no, actually it's of his lungs" and I had to explain how Jack understands what a belly is, but not lungs.  It took a lot of finagling but we finally got the metal plate behind him to be able to take the x-rays.  Morgan screamed bloody murder the entire time we were there.  I felt like everyone was looking at me as though we were not fit to be in public.  I did say to one nurse that both kids are not feeling well -- I mean they were great as far as cooperating and stuff, just a little sick and tired of being there!  Some days I wish I could have a meltdown right in public -- but I really think someone would try to take the kids or something...lol, only kidding.

So it was rough.  Really, really rough.  But we're home and "all done" and tomorrow is a total jammies day!  Also, I just placed an order at Mama's Pizza for dinner!!  

Will keep you posted! Thanks for all of your comments and well wishes!  I have so much I want to comment back to so many of you -- I'm getting there!!

Lots of love!

Sickies...

We're heading to the pediatrician again!  This time both kids are sick.  Fevers, runny noses, coughs...and Morgan is patting at her head on the right side, so I am really sure she has an ear infection.

The Miralax regimine is really, really working (and I mean REALLY WORKING) for Jack.  He seems much happier even though now he's sick with a cold.  I really wish I would have known he was so backed up...poor kid.

We had a wonderful Thanksgiving holiday.  Too much food -- that's for sure!  I did get up and go shopping at 4:30 am on Friday and it was C-R-A-Z-Y -- but I am happy to say everyone is FINISHED and I did get some excellent deals.

I'll be keeping Jack home from school for a few days this week until he's feeling better.  So lots of cuddles, tissues, and jammies all day long!

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?

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!

9/11 In Memory of Gregorio Manuel Chavez.

http://project2996.com/blog/

In Honor of:

Gregorio Manuel Chavez
Age 48
New York, N.Y.
World Trade Center

This biography information was copied from Don's Blog

On September 11, 2001, Gregorio was 48 years old. He worked at one of the most prestigious restaurants in New York City. Windows on the World restaurant occupied the 106th and 107th floors in the North Tower of the World Trade Center.

I know that there were 71 other coworkers there that morning. There was also a security guard, Mohammed Jawara and 6 workers building a wine cellar for the restaurant.

Teething Troubles!

MA MA MY TEETH HUUURRRTTTT!!!!!!!!!

An Award!

My new friend Christine sent me an award!  YAY!  I look forward to getting to know Christine and her daughter Regan as well as the rest of the family!  Thanks Christine!!

I nominate:

Jamie at I Heart Milo -- Milo is such a cutie and Jamie is such a great mommy!!

Lisa at Lisa's Ramblings -- Just 'cause I love reading her blog every day!!  She and Ethan are my heros!!

Kelly over at Jenelle's Journey -- I am so amazed and so proud of Miss Janelle!  She's one awesome kiddo with one great momma (and brother and daddy too!!)

MM's mom over at Till the Short Bus -- She is such an awesome advocate for MM.  She can make me laugh like no other online buddy and I appreciate her friendship and only wish we lived closer!!

And Holly over at Caleigh's Corner -- one look at that baby's sweet face and you'll be hooked!  I love reading her blog!

Here are the instructions for the following Brillante Weblog Premio award recipients:

1.Place the Logo on your blog
2.Link to the person who awarded you
3.You can nominate up to 5 blogs
4.Add their links to your blog
5.Leave a message in the comment section of their blog to notify the winners.

Project 2996 9/11 Memorial

I hope you are willing to take a moment and sign up for your website or blog:

Project 2996 9/11 Memorial

If you remember we did this in 2006

Grrr...

Sept. 9th

Hi Rep,

I understand that it's the manufacturer who needs the information regarding the return of the wrong item. But this is getting very frustrating. The error was theirs in that they shipped the wrong item. If I can't get the correct item shipped today I would like to cancel my order and obtain a refund and of course RA info so I can send the wrong item back.

Sincerely,
Angela Wilhelm

About an hour later on Sept. 9th

Actually just send the RA number -- DO NOT SEND A NEW WALKER. I placed an order elsewhere because my son needs the walker asap.

Angela Wilhelm

Several Hours Later:

Hello Angela,

We will have the RA processed as soon as possible. I do apologize for the mishap with your order.

Sincerely,

Rep

So it went downhill.  I am fed up.  How long could it possibly take to get an RA number?  I don't know.  I ordered through another vendor, although it's the same manufacturer (specific to the walker Jack needs).

We wait...

So now I have two payments of a few hundred dollars out to two vendors and Jack still doesn't have a walker....my new order should arrive between 9/15 & 9/18.

Walker Worries...

You should read this post first.

Well, I learned that a correct walker will not ship until they receive the incorrect walker.  So I had no choice but to order from a different supplier.  I cancelled my order and I am waiting on a RA number to return the wrong walker.  I will only receive a refund after they get the walker.  UGH.  What a mess!  I hope the order from the new place is correct...if not, well, I don't know!  

I am holding out on naming names because I want my money back first!  LOL!

Equipment Update

The wheelchair order form came from the Medical Supply Man yesterday. Everything is set to submit to insurance! We should have it approved by the end of September and ordered and on its way! YAY!

The walker order has proven to be complicated even though I purchased it out of pocket from a website (I WILL fill this information in later). I placed the order on August 30th for a Nimbo Reverse Walker, youth size. I was sooo happy when I found the walker at my doorstep on September 2nd...that was until I noticed it was the wrong size. I called that same day and spoke to a really nice rep who promised to remedy the situation immediately by shipping out the correct walker right away, and obtaining a return authorization number from the manufacturer. Swell -- YAY -- problem fixed! Not so fast. I waited for return information, and finally sent an email.

Sept 5, 2008

Hi, I was hoping for an update on Return Authorization information regarding my order below. The wrong item was shipped and I called two days ago and was told to look for Return Authorization information which I have not yet received. Also, I was wondering the shipping status of the correct item?

The item we should get was the Youth size and what was delivered was the Young Adult size.

Please email or call with information regarding my order.

Sincerely,
Angela Wilhelm

Sept 8, 2008

Hello,

This is in regards to your Nimbo Walker. Drive Medical needs the serial number off of the walker to process the return and replacement order. I know you stated that you had not opened the box. Would you please do so and provide me with the serial number? I do apologize for the inconvenience.

Sincerely,

REP

Notice no reference to whether the correct item shipped yet. I happily obtain the serial number and package the walker back in the box as perfectly as I could, tape and all. I remain hopeful that the new walker will be on my doorstep soon.

Same Day Sept. 8th , My response:

Sure, no problem!

The serial number is:

XXXXXXXX

Angela Wilhelm


Late on Sept 8th Rep's response:

Hello,

I am so sorry for the extra trouble. What the manufacture is looking for is the item number not the serial number. Below will tell you where the number is located. Again, I am sorry for the inconvenience.

Sincerely,
REP


GAH! So I go and reopen my perfectly repackaged walker. Need I remind anyone that THEY sent the WRONG item to ME. I immediately reply:

Sept 8th My Reply

Item number: XXXXXX

Has the correct item shipped yet?

Angela Wilhelm

So Jack has no walker and this is getting ridiculous. If I don't hear back this morning on whether my CORRECT item has shipped as promised on 9/2/08, I am cancelling the order and will return the incorrect item as soon as they send me an Return Authorization number.

My only fear in canceling and ordering from another place is I can't afford to have paid for the wrong walker, the correct walker from old place and a correct one from new place...and for some reason I feel it's a great possibility I'd end up with 3 walkers...

I will say the rep has been polite and I realize it is the manufacturer making me jump through hoops for return info but the bottom line is I placed and order, it was wrong and I want it right.

GRRRR...

Off to check my email again!

A new name!

So you can bookmark www.specialmomma.com -- This is and always will be Jack's Blog -- and the blogspot address and links will always work.  specialmomma.com automatically comes here to this blog.

SpecialMomma ;)

I like it!

Hope you do too!

Tickles and Giggles

Quick Update

Jack slept most of the day yesterday, most likely due to the Diastat. He was a little cranky, but it's to be expected.

He went to school today -- and they called saying he seemed really sleepy. They weren't alarmed and I said it was fine with me for him to nap if need be. So we'll see how his day went!

Also, we are ordering Jack's new wheelchair next week! He had a mobility eval completed and I've been bugging the poor vendor non-stop with our wishlist and questions. He's been amazing to work with. We still have to wait for insurance approval -- please keep your fingers crossed that this part goes smoothly!

We are getting Jack a Quickie Zippie manual wheelchair. It has everything on my wishlist and will be his chair for a long, long time to come.

Here were the things I've learned are important for us and Jack when using his wheelchair:

• Platform flip up foot plate
  
• Tie down option for transportation
  
• Toe loops
  
• Arm rests to help with transfers (to walker or stationary chair)
  
• Velcro leg holder
  
• Mag wheels
  
• Spoke guards
  
• Clothes guard/side guard
  
• 22" tires or 24" tires (so he can still work on self propelling)
  
• Anti tip rear
  
• Push breaks
  
• Wheelchair Back Pack
  
• Harness Chest Support
  
• Buckle Style Lap Belt
  
• Small lateral supports
  
• Pommel on seat to help prevent sliding
  

I must run! Morgan is calling!!

Ups and Downs, EEG Results

I spoke to Jack's neurologist last night. I almost forgot that I had called him at some time during Jack's 48 hour meltdown this past weekend. We have decided to hold tight with any med changes and ride it out, so to speak. Stick to the plan he came up with last week. I told him how we had 48 hours of meltdowns, then two of the best days, even during the EEG. He was quiet for a moment and here, he was looking up Jack's EEG results just to see if that related to the worsening behavior. The EEG showed "Jack has the potential for seizures" basically the same thing it always said. Which is good, it means he didn't have any seizures during the test, not even small ones (that I thought could be happening when he's tuning out or staring off). So some great behavior, no changes in his EEG...we should be good. But we're not.

Jack had a seizure last night and we had to give him diastat (the rescue medication). We waited until the 10 minute mark because it wasn't stopping or showing any signs of slowing up. He came to, looked at us, and went right back to sleep. He had a very, very restless night, lots of little jerks and jumps, thirsty, and over all didn't sleep too well.

I emailed school and called his TSS and made myself a note to call transportation in the morning...so I am finally resting (SLEEPING) well next to Jack who is also resting well and the doorbell rings. I immediately thought of the bus driver. DARN! I answered the door and a man and woman are smiling big smiles and I was soooo confused because I saw the bus in the background...finally after what felt like minutes of staring at them they said they were here to get Jack, his normal bus driver was out sick. I apologized profusely and said this never happens, I always call (read -- I am not one of THOSE people), and I am so sorry, I will call and let you know about tomorrow. They left and I came to blog..still a little fuzzy as I haven't had my coffee yet.

I will keep you posted.

EEG

Jack was so brave and did so well at the EEG this time around. I can't explain how proud I am. He was scared, anxious, and just wanted to go home but he really did well with all of the gluing, taping, strange sounds and lights...I just want to give him the world when I watch him go through this kind of stuff. Not that the test was painful or anything like that -- just imagine though you don't know what's going on and someone does this to you:

(this is OBVIOUSLY not Jack, lol but an image from google image search)

Plus add in all of his meltdown triggers (someone messing with his scalp, being still, being told we can't go home yet) and not a single tear, not a single scream...

We of course don't have the results and probably won't until we see the neuro in October. It's okay though because we do have a plan in place.

Will keep you posted!

Sharing

Just had to share this again :)

Sigh...

Jack's behavior. It's not good. His obsessions have returned full force and it's getting harder and harder to redirect him. It can be anything. I can tell it's going to be "one of those days" when he requests one of his obsessions before he even opens his eyes in the morning. Today it was the baby. This may sound harmless, or even sweet...but it's like there's a button that's pushed and we don't know where the off switch is.

Jack: Baby, up!
Mom: She's sleeping, she needs her rest.
Jack: Baby, GET HER!
Mom: Let's go eat.
Jack: BABY!!??!!!

and it can go on and on and on and on...I found the more I try to explain, the more he shuts down and repeats the request. It escalates until he runs away from me and finds something hard (like the floor) to hit his head. I've become very good a leaping over and placing my hand between his sweet little head and the object of banging.

If I do get him distracted enough to move from one area of obsession to something else, that too quickly goes down hill fast. If he's eating his bowl needs to be filled to a certain level at all times. If he can see the bottom, he freaks...and shreiks, and I gently remind him to use his words.

This is just a small example -- and if it doesn't make too much sense, it's because it's hard to explain. He's not being naughty or spoiled, it's truly related to the sparks and misfirings in his brain. Not seizures -- but it's like his thought process runs a million miles a minute and his communication only works a small bit, and we can't keep up.

I want to write more about this. I need to keep a diary of sorts, maybe to spot trends, maybe just to vent, maybe to have another mom or dad say they understand, they've been there too? I need to label these posts...and I also need to remember to post about the good days too.

He had 3 good days at school last week, then a seizure, then med changes...now his behavior is a mess. He's very emotional, obsessed, and not content to do anything more than a few minutes at a time.

To add to the stress-thick air at our house, poor Morgan is sick. She has a thick runny nose and has trouble eating and sleeping. She woke up last night while Jason and I were watching TV. We brought her out with us and she just cried and cried...poor kiddo. She wanted to get down to walk and when I put her down she went to take a step and fell flat on her face...no arms out, nothing to break her fall, just smack on her precious mouth. It made Jason cringe and bite his fist...I scooped her up for some mommy hugs, held her for a while and when I looked down at her we were both covered in blood! I tried to stay calm, but I felt weak in the knees. We rushed her to the bathroom and wiped her mouth as best as we could. We couldn't tell where she was bleeding from. After a few minutes the bleeding stopped and we were able to clean her up (all the while still screaming at the top of her lungs)...and we saw no harm came to her teeth or gums, it was her top lip that split. She settled down after a drink of water and we cuddled for over an hour until she fell asleep. It was just one of those things that happened so quickly that it seemed unreal. She's okay, just bruised a bit on her lip.

She's still sleeping now, and I plan on letting her sleep in no matter what harm comes to our bedtime schedule. She needs her rest.

Tomorrow the bus comes for Jack. I am anxious, but I know the school and bus company are prepared just in case Jack would have a seizure...hopefully Jack will have a good day at school, and have fun with his friends. He really seemed to love it last week.

I need a refill on my coffee now ; )

Also, sending prayers to those in the path of Gustav, stay safe, we are thinking of you.

Crocodile 4 Sale!

Jack has officially outgrown both walkers (croc and kaye) as well as his wheelchair. I am selling the crocodile to offset the cost of a new reverse kaye walker...and I will be donating the kaye and the wheelchair to DDS (Jack's old school).

Check out the ebay listing...

.

August Album...

For your viewing pleasure :)



Who needs expensive toys -- when you can just buy a bulk 12-pack of paper towels from Costco??

EEG Scheduled...

For next week...September 3rd at 1:00. I am glad to get in so quickly.

Some Great News...

Even though we technically shed the label a while back..."FTT or Failure to Thrive..." I think not!!

At 5 years and 6 months:
your child is 44 pounds, and that is at the 55th percentile for weight.
your child is 45 inches, and that is at the 65th percentile for height.

Jack was not even on the chart for the first 3 years of life...then even in his 4th year he was always below the 3rd percentile.

We tried everything from duocal, pediasure, to resource 1.5 and even benecalorie...met countless times with the feeding/growth clinic, meticulously counted every calorie only to continue to hear how he was so small.

This isn't the first I've heard of this happening in this 5th year for micropreemies. I just wanted to tell you it can happen, we're proof!! And it happened when we finally gave up on the calorie boosters and let him eat anything and everything he wanted. He's even more active and probably burns the same amount, if not more calories than he did when he was FTT.

So have hope, hang on, and know your child will grow!

PS -- Jack is napping and so far no more seizures -- will update soon!

Update on Neurology Appointment

We're home now. Jack was so out of it at the appointment -- I am sure he's still post-ictal from last night's seizure.

The doctor is going to change his medications and he ordered an EEG as well. We're doing it in stages -- first wean tegretol at the same time we're going to be starting Keppra...we'll then wait until that process is done (4 weeks), see the neuro again, then start to wean the valproic acid. We also need labs as well. My head is spinning...i left with so many orders and prescriptions...and all I want to do is cuddle with my boy.

Jack has been drooling excessively and we noticed patches of hair missing from the back of his head -- all are signs of too much valproic acid. So basically we need to find a medicine that works.

Jack was so tired and pale I decided not to go to the ortho appointment. The same ladies who checked us in for the neuro also do the check in and scheduling for the ortho and once they saw him they agreed he looked like he needed to go home!

I hate all of this and I hate how utterly drained we all are after these things. We're going to be hanging out in "he could have a seizure at any moment-land" for a while until the meds are worked out. Even then Keppra may or may not work. Let's pray it does!

Anyway, thank you for your thoughts. I will keep you updated!

Seizure...

Last night Jack had a seizure. He was sleeping for about an hour -- Jason went in to check on him and he was fine, sleeping away -- a few minutes later Jason went back to find him eyes open, pale/dusky, grunty breathing, mouth moving, and arm twitching...we waited it out, and it stopped on its own. That's such a helpless feeling, to watch your child have a seizure.How very glad I am that we have a neurology appointment this morning. I am not thrilled to be driving so soon after a seizure...but we have no choice. He had a very restless night but no more seizures that I am aware of.

Will keep you posted.

The Morgan Show...

Baguttons!

Jack had a great week at school. His new TSS Miss J. is f-a-b-u-l-o-u-s! I love the staff, they are so nice and genuinely care about the kiddos. He's been very, very sleepy after school and wanted to go to bed last night at 7:00 pm...we kept him up until 8:00 for his meds.

Morgan loves taking Jack to school -- she runs around the classroom and waves bye bye when it's time for us to go. Jack had tears this morning, but he put on a brave face and hugged me and said "See ya."

His teacher has this wonderful communication book she sends back and forth with the kids. It has details of Jack's day and on the same page a space for parents to write notes as well. I think she'll get tired of my notes...I tend to write a lot! lol!

Jack has off tomorrow for a neuro and ortho appointment...then Friday is a school holiday and he has a wheelchair/PT appointment to assess his wheeling needs and get the ball rolling on getting a new one...and an ENT appointment. YUCK...too much all at once. I will be looking forward to a nice three day weekend!!!

Oh, and our new favorite saying around our house? "Bagutton" -- that's what Morgan calls buttons. It cracks us up every time!

First Day of Kindergarten

Our Jack Riley is at school right now. It's not that I'm not used to him being in school -- he's been attending preschool for 2 years. It's just the fact that he's officially a Kindergartner now, with a full day away from mom.

The morning went well...he woke up early and had a big breakfast, a bowl of corn pops, 4 pieces of veggie bacon, and 8 oz of chocolate pediasure. He had his meds and combed his hair. I packed his little lunch bag last night: PBJ sandwich, apple sauce, fish crackers and graham sticks...as well as some pediasure. Packed lots of diapers, 2 extra sets of clothing, and his diastat. He was ready to go! We stopped by grandma and grand-pauly's house to pick them up. They wanted to see Jack go on his first day...I was grateful for the company.

We arrived at the school about 20 minutes early. We signed in at the office and walked the hallway to Jack's classroom. Jack spotted the little sink and immediately was fixated on wanting to play with water. The sink is not meant for playing and this upset him GREATLY. He started crying and throwing his entire body backwards in his wheelchair. The teacher took him over to the toys, and on the way there Jack threw himself backwards and HIS WHEELCHAIR TIPPED BACKWARDS...(yes, it does have an anti-tip bar -- but apparently, it's not 100% anti-tip). He was a little stunned, but thankfully unhurt. This has never happened before -- of course it happens within minutes of starting his first day. We made sure he was okay and actually that stopped him from yelling and he calmed down. We said our goodbyes and he was so brave. He said "see ya...love you, bye" a couple of times and we left.

I'm okay, really and I know as the days go on and I learn how he's doing and what the daily routine is I'll be even better. No one ever said it was easy to let go...because, well, it isn't.

Pictures to come ; )

Blog Roll...

Blog roll is broken, and I am too tired to fix it! Grrr...anyone else have an issue of not being able to import the blogroll from google reader? It worked once, and now it's not working (not showing any blogs to import).

Anyhoo -- for some reason my newest additions are still showing, so check them out!! I will go through and add everyone else tomorrow!!

Pool Par-tay!

School Lunch Ideas?

Jack eats a lot of food -- however, this year he's been extremely rigid about the types of food he'll eat. I plan on packing a lunch for him daily. Here are the types of things he'll currently eat that are "packable" he'll eat spaghetti and veggie bacon and a other hot foods, but there's no way for them to heat things or cook things for Kindergarten.

Sliced bananas
Dried apples
Apple Sauce
Crackers (fish, teddy grahams)
Pudding
Yogurt
Peanut butter sandwiches (I checked and PB is allowed in the classroom).
Chocolate Pediasure

Taking these foods into consideration, what other variations are there? What do your kids eat at school?

Ready, Set, GO!

I remember my first day of Kindergarten. I remember my teacher, Mrs. C. I remember playing with my first friend Amy on the playground. We decided to be "best friends" that day. I remember I rode bus number 23. I chose a book bag with a blond cabbage patch kid on it...these are my earliest memories, and now Jack is about to travel that same road!

Monday Jack Riley starts Kindergarten. He has a lime green jungle print book bag, a blue lunch bag, and a blue camo thermos. He has new clothes, new shoes, even new socks...seems he's all ready to go! Thing is, I am not ready for him to go. I can't believe he's no longer a baby, no longer a toddler, not even a preschooler any more...he's offically a big kid now!

He'll be driven by me the first week -- then he'll take the bus. He goes all day. The bus will pick him up at 8:10 am, and drop him off at 3:45 pm. ALL DAY. I know he'll be in good hands -- but it will take a long time for me to get used to the fact that he'll be away so many hours during the day.

I will keep you posted! Wish our big kid good luck for Monday!!

Take a moment and laugh with me!

Type in the following and choose the first choice that appears on the list (that goes along with the question)...

Oh, please do yours too and add it as a comment. I am near tears with laughter and it feels GREAT!

1.Type in "[your name] needs" in Google search:
Angela needs to get away from her kids (OMG, how FUNNY!!!)

2.Type in "[your name] looks like" in Google search:
Angela looks like a dumb ass

3.Type in "[your name] likes" in Google search:
Angela likes to wear bandanas while playing

4.Type in "[your name] says" in Google search:
Angela says VOTE FOR ME

5.Type in "[your name] wants" in Google search:
Angela wants a man (oh no, don't tell Jason!! lmao)

6.Type in "[your name] does" in Google search:
Angela does improv with Oprah (lmao!!!!!)

7.Type in "[your name] hates" in Google search:
Angela hates bathing

8.Type in "[your name] can" in Google search:
Angela can socialize with adults and supervise children even as she prepares the meal (oh how FITTING!!!)

9.Type in "[your name] goes" in Google search:
Angela goes to the Emmys (WOOhoo!!)

10.Type in"[your name] is" in Google search:
Angela is up bright and early every morning doing live reports for the morning shows

Acid Reflux Drugs May Up Fractures

I wanted to share this because so many special needs are on meds for reflux...

WebMD Health News
Reviewed by Louise Chang, MD

Aug. 11, 2008 -- Using acid reflux drugs called proton pump inhibitors for at least seven years may be linked to increased risk of osteoporosis-related fractures.
That news comes from a Canadian study of proton pump inhibitors (PPIs) and osteoporosis-related fractures. PPIs are a class of drugs that include Aciphex, Nexium, Prevacid, Prilosec, and Protonix

The study shows a link between long-term use of proton pump inhibitors and greater likelihood of osteoporosis-related fractures of the hip, wrist, or spine.
But that association took years to appear, and the study doesn't prove that PPIs were to blame for any fractures. Makers of PPIs tell WebMD they haven't seen any signs of increased osteoporosis-related fracture risk in people using their products.
More research is needed; meanwhile, patients and their doctors should revisit the risks and benefits of long-term PPI use, according to an editorial published with the study in the Canadian Medical Association's journal, CMAJ.

PPIs and Osteoporosis Fractures
The study included 63,000 adults aged 50 and older in Manitoba, Canada, including nearly 15,300 who sustained an osteoporosis-related fracture of the hip, spine, or wrist from 1996 to 2004.

The researchers -- who included the University of Manitoba's Laura Targownik, MD, MSHS -- checked participants' prescription records.
People who suffered an osteoporosis-related fracture were almost twice as likely to have used a PPI for at least seven years. Using PPIs for six or fewer years wasn't linked to fracture risk.
Hip fracture risk may have started earlier. People with hip fractures were 62% more likely to have used a PPI for at least five years. Briefer use of PPIs wasn't associated with hip fracture risk.

It's not clear how PPIs might increase fracture risk, but it may be that by inhibiting stomach acid, PPIs speed up bone mineral loss, Targownik's team speculates. But the study doesn't prove that.

The researchers considered many factors, including participants' other prescriptions, medical history, and income. Still, they can't rule out the possibility that they missed other influences.

Benefits of PPIs vs. Risks
Long-term PPI use and fracture risk have been linked in previous research.
That association "is certainly a strong basis for encouraging further investigation," write the editorialists, who included J. Brent Richards, MD, of Canada's McGill University.
What are patients to do in the meantime? Talk to their doctors, the editorialists suggest.
"Certainly, at one extreme, such as in patients with bleeding ulcers, the beneficial effects may far outweigh the risks associated with fractures," the editorial states. "At the other extreme, liberal prescription of proton pump inhibitors for nebulous disorders for extended periods of time is likely worth revisiting."

Drugmakers Respond
Targownik's study doesn't specify which PPIs the patients took. So WebMD contacted the makers of all prescription brand-name PPIs in the U.S. -- Aciphex, Nexium, Prevacid, Prilosec, and Protonix -- for their feedback on the study.

Drugmakers Respond continued...
The drug company AstraZeneca makes Nexium. "AstraZeneca does not agree with the conclusion of the CMAJ study," states AstraZeneca spokeswoman Corey Windett in an email to WebMD. She says Nexium's safety and efficacy have been "consistently demonstrated." Windett says AstraZeneca also notes the study's limits and agrees with the editorialists that further research is needed and that patients and doctors should "weigh the proven benefits of these medications against any potential risks." Patients should talk to their doctors if they have concerns about bone health while taking Nexium or any other PPI, says Windett.
Judee Shuler, senior director of corporate communications for Eisai Inc., which makes Aciphex, states that the Canadian results "warrant further study, as these fractures are important medical issues that can occur for a variety of reasons. Our clinical trial data have not shown an increased risk of osteoporosis-related fractures in patients taking [Aciphex] tablets, nor have our post-marketing data suggested such an association, but we will continue to monitor our adverse event database."

The other PPI drugmakers didn't respond before deadline.
WebMD also contacted the Pharmaceutical Research and Manufacturers of America (PhRMA), which declined to comment on the study.

Conversations with Jack Riley...

As I mentioned earlier, Jack's language and talking are really taking off. I wanted to take the time to post some of my recent conversations with Jack. Remember, this is a kid who had no words or gestures until after his 3rd birthday. Even then, it was "up" "ball" and "ba ba" for drink. This is the kid who was labeled "non-verbal" by the speech therapist as he entered preschool. This is my son, who now, uses what words he has to continuously amaze his momma.

It's a week night and I decide to take Jack to McDonald's for a treat...just us. I tell him we're going to the "fry store" to get a bag of fries...since he can't say McDonald's he starts singing the tune to "Old MacDonald....had a farm....eee, iiii, eee, iiii, oooooo"



"More, drink, please!" "Wa wa, ice, please!" The man likes a cold one every now and then.





"Vacuum, keen up" as he pretends to vacuum the floor in his room. "Mom, help." long pause... "Broom." I find the broom for him. "Veep" (sweep). "OOVE (move)!!" as he goes to town on cleaning he wants me out of the way..."All done."





"cook fries" I tell him okay, he says "vait (wait)" long pause. "Bell" (yes, we cook fries in the toaster oven and wait for the bell). Then, "HOT!!" as I am pulling them out of the oven.

It's not quite dinner time..."hunger" pause "eat?" I reply "Not yet, let's wait for Daddy!" He thinks for a minute..."Da da...herk (work)" pause...."Phome?" Then we call daddy at work and tell him Jack's hungry!!

There are more -- and of course more to come! I am just so proud of my soon-to-be KINDERGARTENER!!

More photos in the August 2008 Album

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