"Grieving the loss of a child is a process, it begins the day your child passes and ends the day the parent joins them."
BJKarrer

Monday, August 31, 2009

My Menu Plan.

It's Monday again. Time to get my menu plan posted on the fridge. I've decided that I really like this idea. I'm able to check my menu and pull what I need out of the freezer each night, in order to be have whatever it is thawed by the next day.

I followed the menu pretty closely for the most part. Only two days that I needed to change it up a little. One, because Paul didn't feel good last week (still doesn't) and he wanted soup and grilled cheese. The other day was the day of Carly's disaster dental appointment day. I was too riled up to think straight. That night, everyone ate left overs.

Anyway, grocery shopping was a breeze. I was in and out of the store in 1 hour and 15 minutes. I made a list of items that I would need over the course of my two week menu plan. I did, of course have to add other items to the list. Items of necessity, such as snacks, fruit, paper goods, etc... And I only forgot to write one item down on my list the first go 'round. It was brown rice. We eat a lot of that around here!

Here's my menu plan for the next two weeks:

  • Tonight - Hot beef sandwiches (beef was left over from last weeks roast) mashed potatoes & green beans-from the garden.
  • Tue - Chicken breasts, couscous & veggies.
  • Wed - Spare ribs, sweet corn and roasted potatoes-from the garden.
  • Thur - Homemade Macaroni & Cheese, burgers on the grill & veggies.
  • Fri - Pizza night.
  • Sat - no cooking. We have a 50th Anniversary party to go to.
  • Sun - Shredded pork sandwiches (left overs from Wed) & salad.

Next week:

  • Mon - Brats on the grill, macaroni salad & sweet corn.
  • Tue - Crock pot pork loin, baked potatoes along with veggies.
  • Wed - Lasagna, zucchini (from the garden) and garlic bread.
  • Thur - Chicken chimmichangas and Spanish rice.
  • Fri - Pizza night.
  • Sat - Baked beans and hot dogs, fried potatoes, crescent rolls.
  • Sun - Scalloped potatoes and ham, green beans and rolls.
Now for a yummy recipe from last week. This is what we call Chicken Broccoli Casserole. Our neighbor made this for us just after the birth of Brad. We loved it. I've made it ever since and it's a big hit in our home. My parents love it too.

3-4 Chicken breasts
1 package frozen broccoli
1 can cream of chicken soup
3/8 C. of mayo
1 T. lemon juice
Shredded cheddar cheese
1 stick of margarine
5 slices of bread (cubed)

Bake chicken and de-bone. Cook broccoli and drain. Chop up chicken and broccoli. Mix mayo, soup & lemon juice together, mix in the chicken and broccoli. Put into a greased casserole dish (2 qt works fine) Then sprinkle with desired amount of cheddar cheese. Melt stick of margarine in a skillet. Toss in cubed bread and toss until covered. (sometimes I add a bit more margarine). Cover the top of the casserole. Bake @350 for 45 minutes. Uncovered.

This is delicious. I serve it with brown rice and dinner rolls.

Sorry, I tried to add a photo but for some reason, blogger isn't allowing it tonight :o(

Saying Goodbye.

It's been a busy weekend around here. I did tons of laundry on Friday and Saturday. Trying to get everything squared away to send Ashleigh back to Kalamazoo. We packed. Did more laundry. Packed some more...tiring!

Saturday, Ashleigh, Carly and I went shopping. Ashleigh needed some last minute things to take to her apartment. We made it fun though. We also went to Panera Bread for lunch. Their soup and sandwich deal is so yummy! Expensive, but yummy! It was the perfect day for soup too. We had some really chilly weather up this way over the weekend.

Sunday we were up and at'em early. Ashleigh needed to get her tiny little Chevy Cavalier packed with TONS of things. After it was packed (I should have taken a picture) there was just enough room for her to sit. It was packed tight and full. I did manage to take a couple of pictures of the girls saying goodbye.

After I snapped a few pictures, it was off to Sesame Street Live for Paul, Carly and me. Carly was a little upset that "sissy" wasn't going with us. At that point, Ashleigh was still doing some last minute things before taking off. Poor Carly left home with Ashleigh here, but returned to no "sissy".

Carly was a bit unsure when the show first started. She kept saying she wanted to go home. Paul and I were a little worried that this was not going to work. We kept talking to her and trying to get her 'into' the show. Finally, she was mesmerized. She couldn't take her eyes off the stage.

The show was great! We had great seats. We sat directly in front of the stage. 4th row, smack dab in the middle. I took several pictures, but have to edit them first. Then I'll share!

By the time intermission came. Half way through the show. Carly was begging, "more, more, more"! At the end of the show, they did a parade. Carly LOVES parades. Of course, she wanted "more, more, more"! Sadly, the parade was the Grand Finale. We left the show and Carly was in a great mood. She thankfully, made it through the show and was quite happy watching all of her Sesame Street friends sing and dance on stage.

I'm busy working on my Menu plan for this week and next. I'll share when I get it all jotted down on paper :o) ! It worked so well the last couple of weeks. I did change it up a couple of times. Once, Paul was sick and wanted soup and grilled cheese, so that took the place of one meal.

For now, I leave you with the girls, saying goodbye.



Saturday, August 29, 2009

A bit riled up..

Actually, I'm still revved up about Carly and the dentist ordeal. I just can not believe how she was treated. How I was treated. Not being allowed in the exam room with her. I'm still blown away by that. I really just kept thinking that they were coming to get me any minute. They never did.

Here's why I'm still reeling over this. You see, when Carly came out into the lobby where I was talking to that very snotty lady behind the desk. She was crying. Had been crying. It was very obvious. Her face was streaked with tears. It was red and blotchy. I was floored to see her in this state. I thought sure they would take me to the exam room. Especially if she were upset. We all know that never happen.

As we got into the car and headed to McDonald's, I noticed a nice red spot on her left cheek. I knew darn well it was from a finger. I watched it over the course of a few hours. I then determined it was in fact a nice bruise from a finger. Carly also had other bruising on the side of her face (same side where the finger print bruise was) and down that side of her neck. She had a nice bruise on her arm. I'll tell ya, I've been sickened over this. Yesterday, I gave her a bath and discovered more finger print type bruises on her shoulder. I'm pissed. To put it mildly.

At least if I would have been in there. I could have seen just how they were holding her. How they were treating her. If they were being mean to her. Although, they wouldn't have been if I were in there too. I do realize that Carly has lower than normal platelets and that could have played a role in this. Honestly, I don't think there is any excuse out there that could justify these bruises being left from a dentist appointment. Low platelets or not. After thinking about it, the bone marrow test in June left no bruising. If you're unfamiliar with that process. They sedate the kids and then put them on their side, in a fetal position. Holding them quite tightly, so the kids don't squirm or move around and cause some serious injury to themselves. I'm not kidding when I say they hold them tight. I've been in the procedure room many times with Carly and witnessed this. Through all those bone marrow and spinal taps, Carly has NEVER bruised. EVER! Even with much lower platelet counts on several of those occasions.

We have made the decision that she will not be going back to that dentist. It wasn't a very hard decision to make. I have already gotten a phone number to another pediatric dentist and I plan on calling them this week to schedule Carly for a 3 month check up. Our fear now, is that Carly will have been so traumatized through this whole ordeal, future dentist appointments may prove to be nothing short of a nightmare for her.

I hate being all riled up....

Thursday, August 27, 2009

Thankful Thursday


  • Today, I'm giving thanks to the fact that Carly's dentist appointment is behind us.
  • Today, I'm giving thanks that God placed Carly in our family.
  • Today, I'm giving thanks to the fact that I have one super good 'in real life' friend who listens to me gripe about ignorant people I encounter nearly daily.(Like the snotty woman at the dentist)
  • Today, as every day, I'm thankful for my family.

Wednesday, August 26, 2009

Dentist appointment.


Carly had her dentist appointment this morning. The one where she was to have her intruded tooth checked out. Remember, the tooth that jammed down into her gum after the fall off a bike at summer school? Today was the day.

Our morning didn't exactly start off smoothly. It was raining cats and dogs outside. Carly is scared to death of rain.(It's a long story, I'll tell you all about it some other time). I knew I was in for trouble due to that darn rain. I got her dressed. She freaked out hearing the rain hit the skylights in the house. We then put Hannah Montana on her boom box and blasted the house out! Only because I needed her to calm down so I could pre-medicate her before her dental appointment. I was hoping the loud music would put her in a better mood. It did for a few minutes. Until I discovered...I had forgotten to do her hair. She HATES having her hair done almost as bad as she hates the rain. I decided I had better get her med in her first. Then battle her with her hair. She ended up in tears, as usual with the brushing of her hair. Ever since she lost her hair due to chemo., she absolutely hates anyone touching/brushing/combing her hair. I've been told that some people have tender scalps after chemo...maybe so, but this is unreal. She's been off chemo since November '06. Although, before chemo., she would sit with no problem while I did her hair. Maybe there is a coloration there.

Finally, we headed out the door. I had to carry her with an umbrella over our heads to the car. She worried herself sick all the way to the Dentist all because of the stupid rain.

Once at the Dentist, she went right in and made herself at home. Scary how comfortable she is in a medical environment. I talked with the hygienist first. Then they came and took Carly to the exam room. They told me they would rather I not go back with her. Carly wouldn't let go of me. I had to pry her off me and put her hand into the hygienists hand. I was a bit uncomfortable with that. No dentist has ever told me to wait in the waiting room while one of my kids goes in for a checkup.

The dentist had me come into his office. We talked a bit. And then. BOOM! He started going on and on and on and on and on...about "special needs kids". How some are so combative and how they need to restrain them. I nearly fainted. I couldn't believe what this guy was telling me. He hadn't even met Carly at this point. How did he know anything about her? What he knew was, Down syndrome. I wrote it on her registration form. Of course, he had to jump the gun and assume the absolute worse in my daughter. I snapped back at him and told him, "Carly is NOT combative whatsoever". Finally, he caught my drift and shut his mouth.

The appointment went well. They cleaned her teeth. Did x-rays and an oral exam. No cavities!!
Which surprised me a little. Carly is not too good at brushing her own teeth, but insists on doing it herself. And, she has never been to a dentist before. Bad of me I know. Honestly, our plate was just a tad bit full the last few years. Anyway, for preventive measures and to monitor her injured teeth, she will be going in every 3 months for cleanings and an oral exam. Fine by me. I would rather make sure her teeth are getting good cleanings. We will of course have to pay for a few appointments out of pocket, but it's only $60. to have a cleaning. Money well spent in my opinion.

As far as her damaged tooth/teeth. Well, we have to sit back and hope they continue to do well. This dentist thinks they will be okay. He did discover today that her top two front teeth were also damaged during her fall off the bike. The ER didn't x-ray her top teeth. So, we now have 5 teeth to be on the lookout for. The three on the bottom and two on the top. Ugh! We have to watch for abscess teeth and rotting teeth. Nice huh? Oh, the dentist today also said that if she were to fall and bump her mouth again, it could be disastrous for her teeth. Just what a mom wants to hear. NOT! They are all permanent by the way.

They did end up putting her in a papoose. I'm not sure how I really feel about that. I mean, I want her safe for sure, but not sure she truly needed to be strapped down for crying out loud. They said she kept reaching up and messing with her mouth. It makes me wonder if that were the honest truth. She is so shy around people, I doubt she moved one single muscle during the entire 30 minutes or so. Course, I will never know because they refused to allow me in the room with her. I mean, Carly is a kid who goes in for lab work/blood draws and climbs up in the chair all by herself. She sits perfectly still while they poke her. She doesn't hardly bat an eye.

I think it all boils down to Carly having the label of Down syndrome. They think they need to strap our kids down. I beg to differ. Our kids, or should I say, my kid is not a difficult kid. She is just like every other kid out there. Sure, she may look a bit different. She may learn a bit slower, but she isn't a freak show for goodness sake. Treat her like every other kid. Not like an animal.

As we were checking out. The lady at the desk was oh so snotty. She told me that because Carly is a "special needs kid" she has to be seen early in the mornings. I said, "WHAT. Are you serious"? I could not believe what I just heard. She then went on to say, "That's what the doc said. Give her an 8:30 appointment". That didn't sit well with me at all. I told this gal that it was just too bad what the doctor says. That time will not work for us. I went on to tell her that Carly needs to be pre-medicated an hour before she is seen. So you want me to pull her out of bed and jam a syringe in her mouth and then head out the door to this place? She responded with, "yes, that's what doc said". I told her quite frankly, "too bad what the doc said. We need a time that is convenient for us". About that time, the hygienist came in and asked what the problem was. I told her before this old snot of a woman could get a word out. Finally, after the hygienist gave the snot woman a dirty look, we got a 9:30 am appointment. As we were leaving the old snot said, "we have to give the special needs kids early appoints. They tend to act up more in the afternoon". Lucky for her, I grabbed Carly's hand and headed out the door. On the tip of my tongue, was a not so nice comment that would have likely gotten me thrown out on my butt. What was it you ask? This is what I wanted to say.... "my daughter may have been born with Down syndrome and you all may look down on her for that...but at least she wasn't born with a big case of ugly like you were".

Glad that appointment is over. I'm also glad that Carly had no cavities. Shew!

Tuesday, August 25, 2009

My new quilty pleasure is...

A Caramel Frappe' from McDonald's!!



Yesterday, Carly and I stopped again at McDonald's. After we finished spending $ at the DMV on plates for our cars. It never fails, whenever we are out and about, Carly wants McDonald's. She likes the same thing each time. A cheeseburger happy meal with fries and apple juice. Plus...a 4 piece nugget with sweet and sour sauce. Now, she NEVER eats all of this food. She manages to eat every french fry she has. Plus my remaining fries. I too order a cheese burger happy meal with fries. I rarely eat all my fries and if I did, she'd have a major fit. She knows, she gets my fries too. We always take home most of the burger and at least 3 nuggets. She then will nibble on them for the rest of the day. Just her cup o'tea I guess.

On to the Caramel Frappe'. WOW are they delicious. This is from me, the one who doesn't drink coffee. I do admit, I love the smell of fresh brewed coffee, but in order for me to drink coffee, it has to be full, and I mean FULL of cream and sugar. What's the point of drinking coffee if you fill it with mostly cream and sugar?? So, I just don't drink it. These Caramel Frappe's are quite possibly my most favorite guilty pleasure to date.

As I was standing in line in McDonald's yesterday, a lady behind the counter was making a Frappe'. I asked her what in the world it was, because it looked so good. I thought it was some new milk shake with whip cream on top. The gal behind the counter told me what it was and then said, "hang on, I'll give you a sample". I told her, "oh no thanks, I don't drink coffee". Her response was, "I promise, you will love this. It's died and gone to heaven good". I stood there waiting on our food when the lady comes over and hands me much more than a sample of a Frappe'. She made me a regular size with lots of whip cream and a drizzle of caramel topping. Just like the one I saw her making for someone else. I figured she would give me a tiny bit, but not the case. I thanked her and we found our seats.

We started eating. I was just eyeballing this Caramel Frappe', not sure if I should take a swig or pass it up. I decided to go ahead and try it. Let me tell you ~ it was AWESOME! I couldn't drink it all. I had maybe less than half of it. I wanted to eat my food because I hadn't eaten all day and was starving. Boy was it hard not to drink that Frappe'.

Last night, I was telling Paul about it. He's a coffee drinker. After dinner, he said, "lets go get a Frappe'". Off we went. This time, I finished mine. Paul thought it was good, but he prefers his coffee hot. Me...well, I think I could have one, maybe two, every day of the week. It's my new guilty pleasure after all. :o)

Sunday, August 23, 2009

Date Night.

Paul and I have birthday's only 5 days apart. The kids like it because they can get us gift cards together! So last night, Paul and I had a date night. Ashleigh and Brad gave us a gift card to Smokey Bones. The meal was great and the place was packed.

After we ate, we headed to the movies. We really hadn't planned on seeing a movie, but the theater was right next door to the restaurant. We figured we'd may as well check out show times. It was 7pm when we pulled up to the sign outside the theater. We quickly read the listings and found this one. Granted, it was rated R, but we had both heard it was a really funny movie. Showtime was at 7:05..we had to hustle. I must say, it was the funniest movie I have ever seen. I had to keep wiping tears away because of laughing so darn hard. No kidding. We laughed so hard through the entire movie. Honestly, the only really raunchy part was at the very end of the movie. It lasted maybe 2 minutes. Guess that's the reason for the "R" rating.

Although this was a funny movie and you really couldn't help but laugh hysterically through almost the entire movie. A couple of parts could have been left out and the it would have been just as funny. They used that "R word" a couple of times. I believe I heard it 3 times. Will Hollywood ever learn?? Probably not.

We rarely go out without Carly. The last time we went to the movies was to see Hannah Montana. Before that we saw The Bee Movie and Horton Hears a Who...or whatever the name of it was! We did have a nice time. I only text Ashleigh twice and called once. Not bad for me...the worry wart.

Carly had fun at home with Ashleigh. I know she thinks that Ashleigh is her second momma. Although she doesn't call her momma, she calls her "sissy". They went to McDonald's and then to the park. Ashleigh was telling us that she had to ask a lady at the park for help getting Carly out of the baby swing. She said she (Ashleigh) just wasn't tall enough to get Carly out all by herself.(Ashleigh is only about 5'1"). She said it had to have been really funny for everyone at the park. Watching this little tiny short gal trying to pull a 40# 42" 7 year old out of a baby swing. Not sure why she didn't put her in the "big girl swing"! After they got home, Ashleigh said Carly started getting worried that we weren't home. She kept asking for "dumb momma and Paul". We got home and were greeted with lots of hugs. Yes, she was still up at 10:30! She's our little night owl. In fact, she was up until midnight last night. Which makes for a tired momma!

Our date night was nice. Wish we could have a few more of them. Since Ashleigh heads back to school next weekend, we lose our sitter. Although, neither of us like to leave Carly. We would much rather take her wherever we go.

Thursday, August 20, 2009

Thankful Thursday




** I'm thankful for Carly's blood work looking better this month**

** I'm thankful for my family**

** I'm thankful for being able to stay at home with Carly**

** I'm thankful my husband bought me a new camera for my birthday**

Wednesday, August 19, 2009

Lab work results.

Yesterday I took Carly to a local lab to have her monthly blood work done. I just received my call from UofM. I still hate when their number pops up on caller ID. My heart still skips a beat. Even though I know what the call is about. Maybe that's why my heart does skip a beat. Fear sets in. Never fails.

Today's lab results are somewhat better. They are at least going in the right direction.

Today's lab work results are:

hemoglobin 13.9

white count 3.8

ANC 1.8

platelets 75,000

Last months results were:

hemoglobin 12.1

white count 2.8

ANC 1.2

platelets 62,000

Not sure what the game plan is for the next month. Our NP is going to talk with Carly's Oncologist tomorrow during clinic. We don't know how long they will continue to monitor her blood work. I suspect it will be for a few more months. We are also going to decide on if we should go ahead with the ultra sound of the spleen. To check out it's function.

I'm beginning to worry as school is about to start back up. Carly will no doubt be getting sick with all kinds of junk. Her platelets will no doubt be taking another hit when that happens. As of now, she can not have anything other than Tylenol for discomfort and fevers. Because Motrin/Advil will eat up platelets. That's not good for Carly, because Tylenol has never really done much for her. She just doesn't get relief from it like she does from Motrin or Advil.

Guess that's about all I've got for today.

Wordless Wednesday.

Tuesday, August 18, 2009

Happy Birthday to...... ME!

Yep...Stephanie you guessed it. Actually...you're the only one! High 5 to you.

Drum roll please..... My new Sony Cyber-shot DSC-H20.



Yes, Paul got me a new camera. Yay! I've been wanting one for a while now. This one let's me capture the moment with my faster than lightening speed 7 year old daughter!! I'm still trying to figure everything out, but I think I'm going to LOVE it.



I had a great day. Well...if you minus the stupid monthly cramps and feeling like crap. You might know, old Aunt Flo would rear her ugly head today, of all days. Carly and I made the best of it anyway.

We first had to get her monthly blood draw. So please say a little prayer. Or a BIG one, that Carly's platelet count is looking better. Stable is good too, but I would much prefer a nice 6 digit number this time around. I won't have results until sometime tomorrow.

After the blood work, we had some running around to do. When we were done, guess where we went??? Carly's most favorite place of all.

MCDONALD'S of course!!




What better way to spend my 43rd birthday than with my favorite little girl in the world.

Happy Birthday to???

A virtual High 5 to those of you who can guess who's birthday is today?!

Happy Birthday?!

Monday, August 17, 2009

My menu plan...

I sat down today and worked out a menu plan for our family for the next two weeks. I'm hoping this will help me out while I'm doing that dreaded grocery shopping. I really don't like to get groceries. Never have. I swear, some times I wander around and around the stupid stores. Yes, I do make lists...however, I always forget to write down several things that we really need. My hopes with this menu plan is to buy up for two weeks at a time. Although I do realize that I will have to buy many other items to fulfill our other meals, snacks and so on. I'm really just hoping this helps me out big time.

Again, I got this idea from Here. Mine is a bit different. Although I love to read her Menu Plan Monday posts each week. I'm not looking to copy her in any way. Just looking to simplify my life a bit more. Thanks to her Menu Plan Monday posts...I'm inspired to try.

Here's my menu plan for the next two weeks:

  • Tonight - Tuna noodle casserole with cheesy topping and peas.
  • Tue - Stuffed green peppers (from the garden) and rice.
  • Wed - Roasted chicken with red potatoes and zucchini (both from the garden).
  • Thur - Burgers on the grill and homemade coleslaw (cabbage from the garden).
  • Fri - Pizza night. Sometimes I make homemade, but usually we order in.
  • Sat - Baked beans and hot dogs with fried potatoes (shredded hash browns)
  • Sun - Chicken and broccoli casserole with rice.(w/left over chicken from Wed)

Next week:

  • Mon - Potato burgers and green beans (from the garden).
  • Tue - Chicken Parmesan with spaghetti and veggies.
  • Wed - Mexican lasagna with black beans and corn cakes.
  • Thur - Roast beef in the crock pot with noodles and veggies.
  • Fri - Pizza night again!
  • Sat - Left over night
  • Sun - Hot beef and gravy over mashed potatoes. (left over beef from Thurs.)

I'll try to share recipes from each week as I go along. I know there are a few some of you will really love. They're simple too. First, I need to get a feel for how exactly this is going to work out. Hopefully, it all goes smoothly. My husband says he feels like he's back in elementary school with a menu hanging in the kitchen! Although, he also says, he looks forward to tomorrows meal!

Busy, busy, busy!

Shew...we've been busy around here since Thursday. Gardening. Canning. Moving Ashleigh from one apartment to another apartment. Celebrating Paul's birthday. Having new cable installed. Taking the dog to the groomer. Swimming. Then throw in the everyday household chores...cleaning, laundry...and more laundry. You get the picture?! Just plain busy.

Carly and I just got back from the garden again this morning. We have our garden at my parents house. They only live 2 miles away.It's not too bad if we want or need something out of the garden for dinner. Our bounty today includes; cabbage, tomatoes, cucumbers, zucchini, summer squash and green peppers. LOVE the fresh garden veggies, but man O'man is this garden plentiful this year. Leaves me little time to do much else.

Thursday was very busy. My parents, Brad, Carly and I headed to Kalamazoo to move Ashleigh from one apartment to another. What a crazy long day that was. Carly, she just kind went with the flow. Like usual. We made a makeshift table and chair for her to enjoy her McDonald's lunch. Which she did enjoy for much of the afternoon! She extremely slow at eating!

We finally got home from Kalamazoo around 7:30 Thursday night. I stopped by a local pizza shop and brought home dinner. I was too tired to cook that night. Before we got back into our home town, I had to stop and pick up a birthday cake for Paul. I'm a big believer in cakes for birthdays. Everyone gets one. No matter their age. Usually, I bake one, but time just ran out. The bakery cake was really quite good though.

We did promise Carly swim time yesterday. She loves to get in the pool. The problem is, she doesn't ever want to get out! Seriously, she would stay in from sun up to sun down if she could have her way! She is all wrinkly each time she gets out. Oh, but she has so much fun! Sadly, I left my camera in the house. Needless to say, I got ZERO pictures of her having a ball in the pool yesterday.

I was able to snap a few pictures of Carly with her best bud Ashleigh, over the weekend. They were having a painting fest. They then, pulled out the sidewalk chalk. Carly of course preferred the painting. Messier I guess!



That pretty much sums up our weekend. Busy!

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I'm in the process of creating a menu plan for the next 2 weeks. I thought I'd give it a try. I got this idea from The mommy diaries I LOVE her Menu Plan Monday posts. I've gotten so many great recipes from her. Anyway, she has inspired me to plan ahead for our future meals. I'm hoping this will make my dread of grocery shopping a little easier to bear.

Have a great week everyone!

Friday, August 14, 2009

Health Care Reform.

Do we need health care reform? Yes. Do we need Obama's health care reform? NO! Have any of you read any of the health care reform information? Do you realize that our kids with special needs. Down syndrome for instance, will likely be turned away if faced with the same health issues as those of 'typical children' because our kids supposedly have poorer quality of life than those of 'typical children'.

I for one am terrified of the health care reform. I already know that Carly will likely have to undergo another dreaded heart surgery in the future. Her third heart surgery. Do I want the Obama team deciding if she qualifies? I already know they don't think she does because of her being born with Down syndrome. My thoughts. HOW DARE our president and his team. How dare they decide if Carly gets heart surgery or the little boy down the hall, who wasn't born with Down syndrome, but has the same heart issues as Carly...gets the surgery before her. Then, they would place Carly on a list. A list of waiting. Waiting for a much needed surgery. A list that could take years to get through. I get chills up and down my spine thinking that a crucial surgery such as open heart surgery, would be put off. All because my daughter was born with Down syndrome.

Now don't get me wrong here. I know we need to respect our President. But, I do NOT have to agree with what he is doing when it comes to the health and well being of our country. More importantly, my daughter.

Obviously, I did not vote for Obama. I was terrified of him and the changes he would be putting in place for our country. I think he's moving way too fast. I think he has too many pots on the fire. This health care reform deal needs to be thought out long and hard. Not jumped into so quickly. Yes, our country is lacking in health care coverage for everyone. I agree, but this my friends is NOT the answer.

Trust me, I don't sit and talk politics. I don't even care much about politics. What I do care about is our country. My family. Our means to be able to provide for our family. Our freedom in America. Our lives in a non socialistic country. I'm getting very concerned as to what is going on with our country and it's leaders. I'm terrified of what will come. I do NOT think having the government involved in our health care is a, healthy thing.

I know full well there are avid supporters of Obama. As I said, I will respect him, he is our President. However, I do not have to agree with the things he is doing. Especially, when it hits so darn close to home.

As I read up on today's news on CNN.com I wonder. What do you all think about this health care reform? Do you even realize how this will effect our kids who were born with Down syndrome? So, I ask you all. Do you feel that your child with Down syndrome isn't worth doctors/specialists time and effort? Do our kids not deserve to live a life as others do? Do you want our President and his team deciding whats best for our children? I think it's time we all speak up. Let our voices be heard.

NO. I'm not a racist. My grand father who passed away 22 years ago..well, I'm sure he turned over in his grave when Obama was elected President of the USA. Me, I don't care what color a person's skin is. Red and Yellow, Black and White, they are precious to His sight. Jesus loves the little children of the world.

**This post is of my growing concerns. Concerns that are justifiable.**

Wednesday, August 12, 2009

Tuesday, August 11, 2009

Camera's. Canning. Puppy's oh my!

I'm in the market for a new camera. I have a Sony Cyber-shot now. It's an OK camera, but I have found that whenever I zoom in on any object, I get a lot of grainy looking pictures. I HATE that. I also cant stand the long delay. Carly is so hard to capture on camera. I need something a bit quicker.

I'm, by no means anywhere near being a professional photographer. However, I do want a decent camera. One that I can snap pictures and get those poses I seem to miss . I would love one that I can zoom in on any object and not get grainy looking pictures.

Anyone out there have any ideas for me?? I would really appreciate knowing what kind of cameras you all have. I know several of you have the Rebel. Not sure I want to spend quite that much money. A happy medium between the Rebel and my Cyber-shot would be nice. Hopefully!

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Today has been a BUSY one! We were picking cucumbers and green beans again out of the garden. I have made another 7 quarts of dill pickles. Still have cukes to deal with tomorrow. Likely, another 7 quarts. I'm also doing green beans again! Actually, I'm still doing them right now. Total of 7 quarts of green beans tonight too. I already did 8 quarts of green beans last week. Sheesh...gardening is a lot of work. Worth it come winter though.

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Puppies. What do you do with a puppy that is so rambunctious??? Our pup is just 6 months old. He is HUGE. He's part Doberman/Rottweiler. We had him fixed last week and he weighed in at 70lbs. The vet says, "he is going to be HUGE". Yeah. We kind of figured that out. However, he has to be the biggest clumsiest pup I've ever seen. He wants to PLAY all the time. I mean always. If you aren't playing with him. He's getting into to trouble. You can pretty much count on it! Such as digging holes in the yard. Pulling flowers out. Yep...he pulls my flowers out of the ground. Roots and all. Chews everything. Loves to eat cardboard boxes. Not that we have tons sitting around, but we do have a few in our garage. Um, well we had a few in the garage.

Yesterday UPS dropped off a large box for Ashleigh. I had no idea UPS had even been here. They never even knocked on the door. Actually, they left the package out in the driveway. Didn't even bring it to the door. Well Diesel, the pup, found that package. He ate a corner of the box. Thankfully, he didn't get into the contents or Ashleigh would have gone ballistic on him.

Today, I was busy getting ready to start canning. First, I thought I had better check on the pup. We have underground dog fencing for our dogs. Works great by the way. Anyway, I went to the back storm door to see what he was up to. Oh did I find a mess. I found particle of minuscule size all over our back porch/steps and side walk. I went out to check this mess out. I had no idea what the heck it was. As I was looking at all the tiny pieces, I also found a large Ziploc food storage bag. It had our last name written on it. Hmm. Still couldn't figure it out. I then decided to check out the yard. That's when I found it. A box. A small box. It had the name of our vet on it. Oh my gosh. I knew exactly what it was. The ashes of out Sheltie, Ruby. Who was killed by a stupid girl talking on a cell phone while flying past our house. The dog was on the side of the road..still, she got hit and killed instantly. I saw the entire thing. That's when we got the underground fence.

I was sickened by my discovery. I was very angry with Paul. I had thought he buried this poor dogs ashes. He obviously did not. OK, so it had been 3 stinking years. He should have got on the ball and taken care of it. Now, Ruby is laid to rest. She is in my flower beds. Home I suppose. But still, I was ticked. That took an hour and a half out of my canning day. You wouldn't believe the mess those tiny bone fragments and ashes make all over your porch. It was not a pretty site.

Will this puppy phase ever end? I sure hope so, for Diesels sake. And mine! Because if it doesn't end soon....Oh my. Not sure what I will do.

I never fails...

Whenever we go anyplace, Carly is normally with us. Rarely do we leave her behind. Partly, because I don't feel anyone can watch her as closely and as well as I can. Ashleigh is fully capable, but still...no one cares for her better than I do. My mom and dad do keep her some, but honestly, they are now 71 yrs old. It's hard for them to keep up with her. As she is pretty much NON STOP! Which we are very thankful for by the way. She is a busy little girl without a doubt. Another reason that we take her with us, is simple. She is our little girl and she goes where we go. And she LOVES to go.

It never fails. No matter where we are. Be it the park, grocery store, the mall, out to eat or even on a weekend getaway. People are drawn to her. It just never fails! Most of the time, it doesn't bother us. Some people comment on how cute she is. To that, we say "thank you". Some people ask her age; and then nearly faint when we tell them she is 7! Every once in a while, I offer up the facts to her size..Down syndrome., along with congenital heart defect and the fact that she endured 26 long agonizing months of chemotherapy. Some are thrown aback, some are not. Some are very interested after hearing about it. Some, wish they never would have asked. Like maybe they could catch something from her.

It's interesting to us, how some people will just look at her and smile. Some people roll their eyes at her. Most of the time it's older ladies who do the eye rolling. I must say, that really blows my mind. I then realize, that back in their day, a child like Carly, who was born with Down syndrome., was tossed aside. Kept locked away in a room so no one would see them. Shut off from society. Left with little or no love. I really can't come up with another reason for these older women to give us or Carly nasty looks. Carly is very well behaved. She rarely acts up in public. Now at home, well - that's an entirely different story!

Something else that never fails. The complete strangers who go out of their way to ask, "is she Downs"? I always reply with this, "yes, she is a child with Down syndrome". Always. That's the way I choose to reply. They will then tell us of their sister, brother, aunt, uncle, cousin etc...who has Down syndrome. It's then quickly followed by, "aren't they the most loving people"? I'm telling you, IT NEVER FAILS! Each time someone approaches us regarding Carly and Down syndrome., they always throw in that stereotype of "so loving".

While we were on our little weekend get away to Splash Universe. We were heading back to our hotel room when approached by a very friendly guy. I noticed right away that he was smiling at Carly. I mean, he was SMILING! As we got closer to him, he did it...he asked the question. I of course gave him my reply. Then he told us, his sister had a boy with Downs. Let me tell you, I can NOT stand it when people say Downs. It's NOT Downs. It is Down syndrome. Sheesh!
He then went on just as I knew he would. Talking about how loving these people are. This time, we said, "well, she's loving when she wants to be, but she is also the most stubborn, strong willed child God ever put on this earth". To that, the man really didn't know what to say. If I'm not mistaken, I believe his jaw dropped open.

He then went on to tell us how the school mainstreamed his nephew. And that he is now 18 and is a sophomore in High School. He acted like it was really something to mainstream. Little does he know..that is the case with many of our Down syndrome kiddos. I of course told him that Carly is also mainstreamed and will be going into 1rst grade in the fall.

Don't get me wrong. This guy was not obnoxious at all. He was really quite friendly. We were friendly back. Talked a little and then headed on our way. As we got to our room, Paul finally spoke. These were his words, "why do people think kids who are born with Down syndrome are so much different than anyone else"? Of course, I had no answer to that question. He then said, "can't people see that Carly is a child like every other child, that she really isn't all that different"? We talked a little about it, but then quickly turned our attention back to Carly and her playful, silly, little self.

No matter where we go. What we are doing. I never fails. Someone knows someone who was born with Down syndrome. Or Down's as most call it. Honestly, I appreciate those people who take the time to ask us questions about Carly. The one's who bother me, are the older ladies who just stare at us like we have a freak for a side kick.

Regardless of what anyone thinks regarding Down syndrome. Our love for Carly will never fail. We are so blessed to have been given this very precious little girl. We are thankful for her every single day.

Monday, August 10, 2009

We were M I A...

Click on photo to enlarge.

Yes we were missing in action over the weekend. No computer and only a few tweets went out! We were much too busy having fun!

Paul and I took Carly to Splash Universe and Cabela's over the weekend. We had a really good time. Except we realized, Carly really should have had a little brother or sister. Just to have a playmate. Anyway, we went Saturday and spent the night. On Sunday, we headed to Cabela's. It's right across the street from Splash Universe.

We played in the water for hours. We went swimming in the hotel pool. Which is in another building and was much quieter. We hit the huge game room. Carly LOVED playing games. She really wanted to play the Dance Moves game, but it was geared toward an older crowd. She tried though.

Finally at 10:30 we headed back to our room for showers and sleep. The room was a 1 bed room. Thankfully, it was a King size bed. It was nice to think we would have ample amount of room for sleeping...NOT! Carly is a bed hog. She was all over that bed. Her legs flip and twist all night long! She looks like a human pretzel. No kidding!

Sunday we got up early and headed to the continental breakfast the hotel offered. It was by far the best one we had ever seen. There were so many different selections. We ate then headed back to pack up our room. We had to check out at 11. However, we could still access the splash park up till 10pm. We opted (well Paul and Carly) to just go for a few hours and then change and head over to Cabela's. I honestly had had enough of the splash pad on Saturday. My foot has a heel spur and if I don't have my shoes on, it KILLS me! So, Sunday there was NO WAY I was going to go shoeless to the splash pad. Forget it!

No doubt, we will be taking her back some day. She couldn't get enough of it. Hopefully, my heel spur will be long gone by then!
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Friday, August 7, 2009

Dance Fever!

video

This is the way Carly and Ashleigh "hang out"! Lots of music and lots of dancing. Sometimes, even the headbanging. Although, tonight Carly decided to mix it up a bit with the dish towel. She had so much fun swing that towel round and round! If you catch it, Carly is telling me "bi, bi" (bye, bye) she says it with more of a southern drawl. Not sure where the heck she picked that up from :o) .

Please ignore the mess of my kitchen. I have been canning pickles all day long! ! I canned 7 quarts of dill and 7 pints of sweet. Big job when you're the only one doing it. That, and tending to Carly throughout the day. She was none to happy with me for working all blasted day in the kitchen. We managed. Thankfully, Ashleigh finally got home and all was well. As you see in the video.

No clue as to why Carly has nothing but underpants on! She thinks it's the coolest thing to rip her clothes off and run around the house in her panties.

While I was uploading this, I realized that Carly's hair is LONG! Holy cow! I hadn't really paid any attention. I normally put it up in a ponytail or pigtails for the summer. Sure, I wash and dry and brush it out, but then I immediately put it up. She isn't used to her hair being down either. (courtesy of Ashleigh) If you notice, she is trying to get it out of her face and push it back. The funniest thing with it being so long now. Hair gets stuck under her arm pits. Man does that tick her off!

Thursday, August 6, 2009

Balloons.


Life’s too short to wake up with regrets. So love the people who treat you right. Forget about the one’s who don’t. Believe everything happens for a reason. If you get a second chance, grab it with both hands. If it changes your life, let it. No body said life would be easy, they just promised it would be worth it. Friends are like balloons; once you let them go, you can’t get them back. So I’m gonna tie you to my heart, so I never lose you.



Wednesday, August 5, 2009

Wordless Wednesday.

I was busy all day in the kitchen. Cleaning, cutting, blanching and freezing green beans from the garden. Carly got home from school at 1pm. This went on until dinner time at 6.






The funniest thing though. She LOVES to clean up. With help of course. But, she LOVES to do it. Too bad I don't love cleaning up as much as she does!

Tuesday, August 4, 2009

Our son.


Thought it was time to do a post on our son. He's 19 years old. Graduated last year from high school. And he suffers from depression.

Lets see. Where shall I begin with Brad?. Lets go back to BC (before Carly) years. Brad was a spunky kid. Full of life and laughter. Joking around was a constant with him. He was very close to Ashleigh, our oldest. He had many, many friends. He made friends quite easily. His friends always said that Brad was so funny. He could make anyone laugh at any time. Brad played baseball every summer. Soccer every spring and fall. He did eventually turn to football. He was 6th grade when football consumed him. He LOVED it. He was very good at it. He continued on with football through the 11th grade.

When Brad was 12 Carly came along. We involved both Brad and Ashleigh very much throughout the pregnancy. So much so, my doctor actually asked if I wanted both kids in the delivery room. Umm, NO! I told the doctor that I would really like to be a grandma some day and I was pretty darn sure that if Ashleigh saw what child birth was like, at the age of 15, I would have no grand kids from her.

During the pregnancy Brad prayed. No joke. He prayed for a brother. He was trying to come up with names for a boy. Both kids thought we needed to go with a C name that ended in the lee sound. To match theirs of course. The only boy name we could come up with that was even close to that was, Charlie. Brad wasn't too keen on that name though. We had our girl names narrowed down to Callie, Caylee and of course Carly.

The ultra sound day came and Paul and I headed to the appointment. We already new that we wanted to find out the sex of the baby. I had planned to find out and then hit the closest store to purchase a couple of little items to wrap up for Brad and Ashleigh to open. Thus to reveal the sex. We did find out that Carly was a girl. A healthy baby girl for that matter. Which couldn't have been further from the truth, but that's an entirely different post. So, to the store we went. Came home with two little pink items that I took the time to wrap up nicely. Let's just say, Brad was no happy camper after they opened the items up.

Jumping ahead to the birth day of Carly. My parents brought the kids to the hospital. I had just delivered when they got there. It was a joyous time. The kids both held their new little sister. They loved her instantly.



After a few hours of this picture being taken. Our lives turned completely upside down. My parents took Ashleigh and headed home. They were planning on stopping at a store to pick up a brand new outfit for Carly to come home in. Ashleigh was quite excited. Brad, was not. He choose to stay behind and go home later with Paul. As we sat gazing at Carly. Which we had named Carly at this point. Paul had taken the kids to the gift shop soon after the above picture was taken. They were looking for a "sign" as to what we should name this beautiful baby. Out of the three names we had picked out. Carly was the only name remaining on any item in that gift shop. The kids said that was clearly a sign. And so the new baby had a name.

Soon after all of that, the doctors came in. Brad was sitting in a chair watching TV. Paul and I were holding Carly. That's when we were told those awful words that no mother EVER wants to hear just after giving birth. "We're sorry, but" and they went on to tell us that Carly had couple of the markers that go hand in hand with Ds. Brad sat and watch Paul and I crumble. How unfair for him to have to witness that. He had no idea what the doctor's were even talking about. He just new, that whatever it was made Paul and I crumble into a million pieces. I will NEVER forget Brad's words to me when I cried, "how are we going to do this". Brad said, "we'll take care of her mom". Best thing I could have heard right about then.

Things went fairly well for a few weeks. Until we had been given the devastating news of Carly's severe heart defect. Again, we fell apart. He was 12. He had no idea what was going on.

The day of surgery came. It was awful. We all, my parents, my brother and sister in-law, Paul's mom and Ashleigh and Brad were present. I handed my tiny 3 month old 8# 8oz baby over to the anesthesia team. My knees buckled and I feel apart. Again, in front of my 12 year old son.

The night of surgery. Carly coded. It was 3:30am and we were told to call our family to the hospital. Ashleigh and Brad got there around 5am. Scared to death. Again, our son saw us falling apart. He saw his tiny baby sister fighting for her life. He held it in. He wouldn't talk much about it. He was terrified. Sadly, Carly needed our undivided attention. She needed it 100%.

Things continued on. Carly got better. We finally were a family again after 31 days of hospital living.

Then the second heart surgery came along. He was scared. He asked lots of questions. We told him things would be much different this go around. Carly was very healthy this time. Surgery happened, things went great. We were back at home on day 4 post op.

Three months after that, leukemia hit. That's when Brad started going down hill. He really shut down. He put more effort into school things. Hanging with friends. Which was fine. But he changed toward Paul and I. Sadly, we couldn't even see it then. We were yet again, totally consumed with Carly and her very fragile state of health.

Skip ahead to Brads senior year in high school. Well, actually, it was the summer before. He started to close himself off. He slept a lot. He refused to have senior pictures taken. He couldn't get out of bed the first day of school his senior year. He went the second day, but we were very concerned. Not the same kid he had been the year before. You wouldn't believe all the thoughts that went through my head at that time. Thoughts of what could be going on. How did it get to this point.

Two weeks into his senior year, he had gotten sick. Fever, sore throat, headache. It was over a weekend, so I couldn't get him to the doctor until Monday. That Sunday night I realized his neck was very swollen . I asked him if his neck hurt. He said,"yeah, it really does". Off to the doctor we went.

The diagnosis was Mono. Blood work revealed he was severely infected with it. The doctor said it was the worse case he had ever remembered seeing in all of his years of practice. Great. Just what we didn't need. Although, this did answer a lot of questions. As to what the heck was going on with this kid. Brad's Mono lasted through out his entire senior year. Not fun for any of us.

He could not function. The doctor had him on steroids. Then he was placed on an anti-depressant. He went to the doctor every two weeks. Since then. Brad has been a very depressed kid. That darn Mono was the icing on the cake. It put him right over the edge.

Through the last year. Brad has made great progress. He has been going out to family functions. Which he would NOT do during the Mono and severe depression. However, he is not back to Brad. He still suffers. It's very hard for him. It's hard for us. He is not working. Nor taking college classes. We encourage both, but refuse to push. The doctor has told us that now, it's likely anxiety issues. From being so depressed and from being out of the day to day functions of life for so long.

We now see that this was just the boiling point for Brad. He boiled over when Mono hit. It was progressing. How could it not. He had seen a lot. Been through a lot. All starting when he was 12 years old.

Paul and I are consumed with guilt over this. We know now, that we should have done things differently. Spent more one on one time with Brad during Carly's many health issues. We tried to. We did some. Sadly, it just was not enough. If I could go back to the diagnosis of Carly's leukemia and do things differently. We would have gone to family counseling. My mind was just swimming during that time. Again. I did not THINK very clearly. I'm angry with myself. I let my son down terribly. Now he pays the price.

Life is a struggle. No doubt about that. Coupled with depression makes for a big mess. We will continue to encourage. Hope and pray that some day soon, Brad will see that it's in his best interest to seek professional help.


We want this kid back. Our happy son.

Monday, August 3, 2009

Masterpiece.

We have really been working with Carly on spelling her name. First name only. For now anyway. She has been able to print random letters of the alphabet for a couple of years, but was no where near being interested in spelling her name. So, it has been practice, practice, practice for several solid months.

Carly always has a pencil, marker, crayon in her hand. I work with her often. Except that she does not like for me to watch her work. As a matter of fact, when it comes to writing her name, she flat out refuses to do so with me anywhere around.

The first time she wrote her name at home I didn't notice it right off the bat. I was in the kitchen, as I so often am! When she started hollering for me. She wanted me to see what she was writing on her pad of paper. She has several pads of paper ;o)

I went to see what she had done and at first failed to even see the HUGE accomplishment. Her name. I saw the X's and A and B right away. She acted really put out. Then I saw it. Her name. Holy Moly, I almost fainted. I did cry. No doubt Carly thought I was nuts! Then of course I made a huge deal over it. She was very, very proud of herself.

As you see, I snapped a picture. I wanted to email it to her kindergarten teacher. And to some family and friends...you know, to brag a bit! I just knew the teacher would be as excited as I was. So, I did just that. Emailed the picture to the teacher. The next day, the teacher emailed me back. Here are her words, "Oh Joany, Carly has been doing this for several weeks at school". Gosh darn it. I thought I was the first one to see her masterpiece. Not the case!

The date of the following masterpiece was 4/10/09. As you can see, Carly wrote her L upside down and had a bit of trouble with the Y, but anyone can clearly see, she wrote her name.


This next picture is much improved. It was written today, 8/3/09. Again, I was in the kitchen. Carly came out and asked for paper and a pencil. I gave her both and she went on her merry way.

Later in the day, we were cleaning up the mess she had made in the living room. I picked up the pad and almost fainted. She had found (Lord only knows where)a green crayola marker. Quite clearly, she wrote her name with it. I asked her, "Carly did you write your name today", her response was, "no, Paul" I said, "Carly daddy isn't home". She shrugged her shoulders, in true Carly fashion. She kept telling me no, Paul. So, I dropped it.

I then got to looking a bit closer at the paper she wrote on. I had jotted down some figures while paying bills. I noticed those figures were still on that very piece of paper where her name now appeared. She did write it today. The little stinker wouldn't own up.


We are all beyond thrilled with how very much improved her name writing skill is. She never ceases to amaze us. She is, without a doubt, our littlest masterpiece.

Sunday, August 2, 2009

Fun Weekend.

Saturday afternoon, park#1.


What a fun and busy weekend. Paul and I took Carly to a couple of different parks both Saturday and Sunday afternoon. She had so much fun.


She loves the water. She and Paul walked around a little. She also enjoyed watching all the seagulls.


We checked out the splash pad. Carly was a little unsure of it. We brought bathing suits, but hadn't changed at this point. We wanted to see how she would react to the sprinkling water and the spurting spouts.


She was just deciding she wanted her bathing suit...when the RAIN came. :( Oh well, we were at the park for over an hour. Carly had fun while the rain stayed at bay. We'll go back another time.


Sunday afternoon, park #2.


She climbed.


She rode the bouncy ladybug. And loved it. They had several of these at this park. A dinosaur and a four wheeler to name a few. But, the ladybug won her over.


She played inside a bee hive house.


She climbed some more!


She and daddy went swinging on the tire swing.



"Paul,Paul, P a a a u u u l l l" she kept yelling. He slipped up the center of the play structure. She was completely miffed by it! However, she insisted on trying it too. With much assistance from mom and dad, she was successful.

I wish everyone could enjoy life as much as Carly does. She is able to find joy in anything and everything. We are so blessed. For that, I'm very grateful.