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

Tuesday, April 27, 2010


My heart is empty as I type. I can't get into anything, such as details. We have none as of yet. And my brain can not process all that has gone on since Friday. Complete and unexpected loss may well be the very hardest loss of all. 8 year olds aren't suppose to drop dead. Not suppose to happen. No warning signs. NOTHING. At approximately 10:30 am, Carly started to turn blue, we believe she had a seizure. Paul began to work on her, but she had begun to turn purple.

Poor Paul was working on Carly, doing CPR before the ambulance arrived. She was stable in the ambulance with normal sinus rhythms and everything. She began to crash 5 miles away from our home, in route to UofM. We did not make it to UofM. She was to critical. She passed away at a local hospital in the ER, at 12:05pm in the arms of me and Paul. My parents were also at her side.

We can not express our thanks enough, for the wonderful outpouring love and support.

Fly high baby girl. Fly high. Mama will love you always and forever.

Tuesday, April 20, 2010

Everything's going to be alright.

I found an article that made me smile. It gives me so much hope for the future. It made me realize, that even though there are many people who will not accept Carly for who she is; a child born with Down syndrome. There are so many people who will accept her. People will value her as a person. So what if not everybody does. For each person who looks down on Carly, there will be that many more who will not.

There is a reason that Carly was born with Down syndrome. I don't know that reason. I may never know the reason. But that big guy upstairs knows. God has a plan. Whether it's to teach others the value of a particular person. Make a family more appreciative. Or prove to families that they can in fact, over come various obstacles. I do not believe that having a child born with Down syndrome is a curse. It's a blessing. I've always known that. But stories like the following, click here, are absolute proof!

Sometimes I tend to get off track with my ability to actually see what's important, what matters and what doesn't. Easily done when someone is constantly throwing curve balls at you. But when I read stories like this, I for one believes that eventually, everything is going to be alright.

Monday, April 19, 2010

My Menu Plan Monday.

Busy week ahead. Paul's working tons of hours. Double shifts and all. And quite honestly, I've got so much going on with Carly and the school. The very last thing I want to do, or have time to do, is spend hours in the kitchen. Therefore, I'm going to take a break from cooking actual meals every day. What I call meals, that is!

Monday: Tacos & corn fritters
(I'll be frying up my meat today for both Mon & Tues dinner)

Tuesday: Chili and grilled cheese

Wednesday: Baked spaghetti w/meatballs, salad and garlic bread

Thursday: Chicken, mashed potatoes/gravy

Friday: Pizza night

Saturday: Out to eat

Sunday: crock pot meal

Thought I'd share a simple recipe today. These are called, Snack Bars.

1 1/4 package of Graham crackers
1 C chocolate chips
1 can sweetened condensed milk

Spray a 9x9 baking dish with cooking spray. Break graham crackers into bit size pieces. Place in a small mixing bowl. Add chocolate chips then pour in sweetened condensed milk. Mix gently. Pour mixture into 9x9 pan and bake for 30min @ 350.
Allow to cool completely before cutting.

See those graham cracker pieces? You want them a tad bit smaller than that. Not crumbs though. You could even slack on the chocolate chips. It's a bit of a chocolate chip overload. For some reason, the chips on the top of the snack bars, don't melt up nicely. Not sure why that is. So don't leave this in the oven waiting chips on the top to melt. Aint gonna happen!
Also, make sure this is cooled completely. Carly insisted on having some before it cooled and it was a MESS! Good, but a mess.

I may not be blogging much. Several things going on this week. Many of these things involve Carly. I'm waiting to hear from the Special Ed Director, who rudely SLAMMED the phone down in my ear on Friday afternoon. I hadn't even gotten into a conversation yet. The only thing I was able to say, was "Hi K, this is Joany" SLAM! I did call back immediately and left a not so nice voice mail, telling K, "I certainly hope that wasn't an intentional hang up on me". I never did hear back from her. The acting Superintendent and the Board President both received calls from me that afternoon. Neither were too happy that a school administrator hung up on a parent. I will also be checking out a couple of other schools this week. I have to place a couple calls first.

If you feel it in your heart, please say a prayer for us to get through this mess with the school. All we want, is what's best for Carly. We are suppose to be going into an emergency IEP meeting this week. Although no one has set that up yet.

Have a good week everyone.

Sunday, April 18, 2010

Hot Pockets and Apple Pie!

This is Carly's new favorite food.
She LOVES them. Asks for them every day
when she gets home from school.
Lately, she asks for them for breakfast, lunch & dinner.
I do think, she is hooked, or maybe addicted!

Ham & Cheese is her very favorite.

Each time I pop one in the microwave, her
eyes light up. Which concerns me..because, seriously
who wants their kid to "light up" over any kind of
crap food. Which is what I call Hot Pockets.

The funniest thing; Carly can't for the life of her remember
that she is in fact eating a Hot Pocket. She calls it, "apple pie"
or "pot pie". Yes, she happens to LOVE both of those foods too!
I have to remind her, "no Carly, Hot Pocket". To which she
replies, "duh"!

Speaking of Apple pie. Carly is on a real apple pie kind of kick.
Especially since Easter. When grandma made several kinds
of pies. One being apple!

The week following Easter, Carly kept asking me for "apple pie".
I had no apples to make her one. Which led to quite the
water works! Ashleigh came up with the idea
to call grandma and ask her to make an apple pie.
The catch being, Carly had to actually ask grandma.
That was interesting. Carly gets really shy on the phone.
Even if it's grandma! Eventually my mom heard
in a very quiet voice, "apple pie".
Well, grandma did not disappoint. The next day, Miss Carly
had her very own apple pie. An entire apple pie. Talk about a happy kid.

Rest assured, she did not eat the entire pie all by herself.
Her dad did help her out and her sissy too. But I
have to say, she gave it her best shot to polish the
whole pie off herself.

I'm going to really throw her a curve ball this week. I'm making a peanut
butter pie for Paul. That should really confuse her! I'll bet she'll
enjoy it though! It's pretty tasty and Paul's favorite pie.

Thursday, April 15, 2010

Thursdays rant!

I don't know about anyone else, but I feel that this has been the longest week ever! I'm so thankful tomorrow is Friday.

Today was a busy day. Off to mail taxes this morning. Banking. Then to my moms to compose a letter to the School Board, Special Ed Director and the Elementary Principal. That letter took me over 3 hours to complete. I'd type it. Mom would proof it. I add things to the letter. Took things out of the letter. It was quite the process. After the letter was finally complete. I printed off a copy for each of the above and headed off to the school to hand deliver each letter.

Arriving at the school in time for recess. I kind of planned it that way. I wanted to see if Carly was outside today. I told her this morning to go outside at recess and play with her friends and have fun. Course, I tell her to have fun every single morning as she is waving and blowing kisses at me from the bus window. So, I get to the school and head outside. I couldn't find her. Shocker..likely 'cuz there are 6 classrooms out all together! I finally asked a playground aide, who kindly pointed Carly out to me. I stood back, in the shadows so to speak. I did not want Carly to see me. I want to observe from afar. If she sees me...she clams up. At first, I was not too happy about what I was seeing. Carly just standing, watching. Watching the kids climb and play on the monkey bars. I know she was wishing she could climb and play too, but she can't do that without assistance. Eventually, she plopped down on the ground and watched. It took all I had within me to not go to her rescue. But, I just watched. Finally, after about 10 minutes a couple of little girls from her class came and sat with her. I couldn't hear what was being said, but I saw the three of them laughing and tickling each other. Until Carly had had enough and pushed their hands away. Then, all three girls jumped up and ran. Yes even Carly. When Carly runs, it's nothing like her peers. Thanks to that stupid blood infection that caused her brain to swell..leaving permanent damage/weakness to her left side. When you watch Carly walk, she walks with a very obvious limp, for lack of better word.

Next up, the slide. Carly climbed the play structure and headed to a slide. Then she changed her mind and turned back around. I was disappointed. But then, to my surprise she headed to another slide at the opposite end of the play structure. She went down! I was so happy to see that. When she got to the bottom, she was all smiles! She was having fun. Something that doesn't happen all to often for Carly while at school.

As recess went on. I watched. She and her 2 little friends walked over to the asphalt, got into a circle while holding hands. Swinging their arms and giggling. It melted my heart. And then the whistle blew. It took the recess aides a couple of minutes to convince Carly that it was time to go back to class. Eventually she complied. Off she went.

In regards to the letter. Paul and I have put in writing our concerns including, asking for a Certified ASL (sign language) Para Pro., for next year. We've informed them that Carly will be going on a reduced schedule. I included the fact that we feel she is bored. Is receiving very little interaction from her aide and teacher. We know she doesn't get any encouragement. We've requested that she immediately be removed from Spanish class. I mean seriously. This little girl barely speaks English. Spanish class is a big old waste of time. For my daughter that is. I included many issues that you all have been reading about throughout this school year. I'm sure this will grab some major attention. At least, that's what we're hoping for. We just feel like we need to get a grip on this. NOW. It isn't going to get any better unless this school knows that we mean business. I'm through taking crap from this school.

Dr. Phil is on right now. They're talking about special needs kids being abused at school. By the hands of the so called professionals. Unfreaking believable what I'm seeing on my television. If I EVER saw, or found out that anyone at that school, or any school for that matter, abused and I mean physically abused Carly. I'm quite certain, I would kill them. There, you have it. I would kill someone over Carly. OMG. One teacher actually killed a student by restraining him. This teacher was a female, 6ft tall and over 230lbs. She restrained this boy (7th grader) face down on the floor and she sat on him. She crushed his chest. So badly so, that the coroner said it was comparable to a car crash victim. Guess what?? This teacher didn't even go to jail! An attorney/special needs advocate is on the show too. She advises parents to be aware. Especially to kids who are basically non verbal. Which Carly is considered by the school. Great. Just great. I should have turned the stupid TV off.

Like I said,,, I'm so thankful this week is almost over. Whew...what a week!

Sorry for venting. I promise, I will stop. First, I would like to thank those of you who are leaving me comments of encouragement. It means quite a bit to me. Hopefully, through our awful experience, it will give you all a heads up when your little ones start school. I didn't have any idea what we were in for. Man, what a ride.

Wednesday, April 14, 2010


Yesterday, after I posted that downer of a post. I received a call from Carly's resource teacher. Carly goes to the resource room every day for 30 minutes. The classroom, gen ed teacher wanted Carly in there most of the school day. I came down hard on her for that one. I won! Anyway, I get this call that Carly was acting oddly. So, I head to the school. They didn't know I was coming. I like it that way. If they know I'm coming...they're ready for me.

First stop; the playground. It was Carly's recess time. Only, she wasn't outside. Hmm??!! I found a playground assistant and asked where Carly was. She told me she didn't know. She had looked for her, but hadn't found her. So, I then asked this lady if she could tell me how often Carly is out for recess and what does she do during recess. This lady told me everything. How Carly rarely is outside. And, when she is out she basically will just sit on the sidewalk and watch everyone. I can't blame Carly for that. There are 6 classrooms out at the same time. It's CRAZY out there. But, in the back of my mind, I'm thinking....why isn't the aide encouraging playtime at recess?? Why isn't the aide encouraging play time with friends at recess??? Why isn't the aide letting Carly swing? Carly loves to swing. Why is Carly just sitting, watching? That's not fun. That's sad.

Next stop; gym class. Well let me just tell you. My heart broke into a million pieces. They went to gym..(Carly had no idea I was even at the school) Carly did as she was suppose to. The boys line up on one side of the gym and girls line up on the other side. Next came time to run laps. Carly sat down. No one went to her to encourage her to get up and join in. Again, Carly is very leery of kids and their craziness. She is well aware that she has balance issues. Rambunctious kids really put her on guard. And that's fine. But, not one adult in that gym class encouraged her in any way shape or form. The activity for gym that day was soccer. Carly's option was play or sit. Well, the gym teacher KNOWS she is very guarded to play that type of sport. Let me tell you, that soccer ball was flailing around like crazy in that gym class.

Next stop; a chat with the gen ed teacher. She told me that Carly didn't want to go out for recess. Which I can't figure out. She LOVES to go outside. I can't keep her in this house. She will stay out all afternoon. We have to drag her into the house for supper time. I asked the teacher what Carly did while everyone else was outside, getting fresh air and burning off some energy. She said, "I told Carly is she stayed in, she had to lay her head down and rest". How boring for Carly? 25 min's of laying your head down. Then off to gym class to sit and watch for 30 min's.

I was sad. Again.

Now. I don't know about the rest of you. But I know if I were Carly. Not being involved. Not having anyone really give a hoot whether or not you're involved in the "fun" stuff at school. I would act oddly too. Sometimes, I think they forget that Carly is a child. She has feelings. Feelings that get hurt, just like every other kid in that school. Carly just cant always vocalize her feelings. That makes me sad too.

Paul and I have talked a great deal about this. We have decided to pull Carly out of full day school and place her back on a reduced schedule. I don't want to do this. It pisses me off to have to do this. But, I've seen with my own eyes. My daughter is very sad. It's gut wrenching. And honestly, what's the point of her being there every afternoon? It's recess time and all of their specials. She doesn't get called on. She doesn't get attention, encouragement or does she receive praise. Her gen ed teacher gives out stickers everyday. Carly NEVER gets one. NEVER??!! This teacher also gives out small certificates when a child does 'top notch'. The year is almost over, Carly has received one. ONE. It was for coming in from recess at the first whistle. That was back at the beginning of the year.

Today, Carly is at home. She woke up dry heaving at 5am. Within 45 minutes, she was throwing up. It was short lived and she was back to sleep by 7. She seems fine now.

We see such a different kid than the school sees. Carly is happy, playful, OUTSIDE, enthused about doing her workbooks. (for hours!) My gut tells me, there is a deep problem. One being, I don't think the teacher ever took time to try to connect with Carly. She pretty much is nonexistent in her gen ed classroom. I've seen this with my own two eyes too! Thank God for the kids in Carly's class. They look out for her. They are concerned for her. They LOVE her. They all want to sit with her. They all want to play with her. They all want to walk with her in that hall. They all want to help her with her work. But, the teacher and the aide fall short.

It makes me sad. How does one stop being so sad?

Tuesday, April 13, 2010

Being left out.

We've experienced this in the past, but just because we have, doesn't make easier this time around. Being left out is not fair. It's not nice. In fact, I believe it's down right mean.

Last week, Carly was on Spring break. She came home from school on Thursday April 1. Break started on April 2. I opened her backpack and pulled out her take home folder. As I was going through her papers, I came across the teachers bulletin. This bulletin includes information of what has been going on in class. What is going on. What will be going on and so on and so forth. Well...this particular bulletin included a picture of the kids in Carly's classroom. Except, I looked and looked and didn't find Carly. She was not in the picture. :o(

Why? Why leave a student out of something the whole class is included in? Why? I have no idea. The more I've thought about it, the more upset I get. Sad, upset..not mad, upset.

The theme of the picture was country week. Each elementary class had a country. They were doing the "Reading Olympics" for the month of March. Being it was the "Olympics", they had closing ceremonies. This pic was of Carly's class with their flags of their country. All the kids were holding their flags and smiling sweetly. All the kids, except for Carly.

For the life of me, I can not understand why the picture was taken during the time of one of Carly's specials (speech, PT, OT). Did it have to be taken right then? Could they not have waited the 30 minutes during Carly's special to include her? Could it be, that the teacher really doesn't consider Carly as her student? I believe, even though it makes me cringe, that the teacher really doesn't pay much attention to Carly.

Now. Before I get comments from teachers backing teachers, let me say this. This particular teacher has, in the past informed parents of special needs kids, "that she is allowing their child in her classroom". Oh really??? Hmmm, I beg to differ. I've also seen first hand the way this teacher interacts with Carly, or shall I say, I've seen her "lack" of interaction with Carly. It really does make me very sad. More so than mad.

Maybe that's why I've waited so long to blog about it. It just saddens me so.

I realize that my daughter was born with Down syndrome, but she still has feelings. Feelings that were very apparent just the other day when Carly sat looking at her classroom picture, but never found herself. It broke my heart. Being left out is no fun for anyone. Especially kids.

We are trying to grow a thicker skin. As so many people tell me we need to do. However, these types of things do make me so sad. I see my daughter being left out of something controlled by a teacher. To me, there is no excuse. This teacher or any teacher, has the responsibility to help bridge any gap or doubts the other children in the class may be having toward a child with special needs. Not just Carly, but any child. What kind of example does that set for the other students? Even though the students all LOVE Carly.

So before anyone feels the need to comment on this post, defending the teacher. There is no reason at all that Carly was left out. She hasn't been absent from school in over 3 weeks. And no one can tell me, that this picture couldn't have waited until Carly was back in her classroom.

The fact of the matter is. Carly was left out. And sadly, this will not be the last time.

Monday, April 12, 2010

My Menu Plan Monday.

I realize this is going to be late posting today. Oops. I mistakenly posted my previous post ahead of this one. Guess I should pay closer attention to my scheduled posts!

I missed last week's menu plan. Trust me. I didn't do much, if any cooking. Paul worked late a couple nights. So we just winged it. Ate soup,,,out of the can! And, Paul brought home take out a couple of times. Very unlike dinner time for us, but I was just too dizzy and extremely weak. I felt like I was walking on a cloud...sideways. If that makes any sense!

Here is this weeks menu plan:

Monday Tuna noodle casserole, dinner rolls & peas

Tuesday Sloppy Jo's, homemade mac and cheese & cheesy broccoli

Wednesday Oven fried chicken, roasted potatoes and veggies

Thursday Meatloaf, scalloped potatoes & green beans

Friday Pizza night

Saturday Steaks on the grill, baked potatoes & tossed salad

Sunday Crock pot dinner. Roast with veggies, rolls


Today's recipe is a very simple way to make really yummy chicken.

Oven Fried Chicken

3 - 4lbs chicken pieces (breasts, drumstick, things)
1 c. corn flake crumbs
1 c. skim milk
Seasoning (optional)

Preheat oven to 400 degrees. Remove all skin from the chicken, rinse and dry the pieces. Season. Dip in milk, shake off excess, and roll in the crumbs. Let stand briefly so coating will sticks. Place chicken in an oiled baking pan. ( I line my pan with foil for easy clean-up.) Do no crowd you don't want the pieces to touch. Bake 45 minutes or more. Corn Flake crumbs will get crispy!

Scary truths.

I received the following in an email. I thought I'd pass this along, to all my contacts. Very worrisome, to say the least. I'm terrified as to where our country is headed. What this means for my parents. Carly. And the rest of us. I am so against the government, having a say in our lives.


According to Snopes, the following is correctly
attributed to Michael Connelly, Retired Attorney.

A question many of us are asking. Is this health care thing constitutional?
A retired Constitutional lawyer has read the entire proposed health care bill. Read his conclusions. This is stunning!
The Truth About the Health Care Bill
- Michael Connelly, Ret. Constitutional Attorney

Well, I have done it! I have read the entire
text of proposed House Bill 3200: The Affordable Health Care Choices Act
of 2009. I studied it with particular emphasis from my area of
expertise, constitutional law. I was frankly concerned that parts of
the proposed law that were being discussed might be unconstitutional.

What I found was far worse than what I had heard or expected.

To begin with, much of what has been said about
the law and its implications is in fact true, despite what the Democrats
and the media are saying. The law does provide for rationing of health
care, particularly where senior citizens and other classes of citizens
are involved, free health care for illegal immigrants, free abortion
services, and probably forced participation in abortions by members of
the medical profession.

The Bill will also eventually force private
insurance companies
out of business, and put everyone into a government
run system. All decisions about personal health care will ultimately be
made by federal bureaucrats, and most of them will not be health care
. Hospital admissions, payments to physicians, and
allocations of necessary medical devices will be strictly controlled by
the government.

However, as scary as all of that is, it just
scratches the surface.
In fact, I have concluded that this legislation
really has no intention of providing affordable health care choices.
Instead it is a convenient cover for the most massive transfer of power
to the Executive Branch of government that has ever occurred, or even
been contemplated If this law or a similar one is adopted, major
portions of the Constitution of the United States will effectively have
been destroyed.

The first thing to go
will be the masterfully
crafted balance of power between the Executive, Legislative, and
Judicial branches of the U.S. Government. The Congress will be
transferring to the Obama Administration authority in a number of
different areas over the lives of the American people, and the
businesses they own.

The irony is that the Congress doesn't have any
authority to legislate in most of those areas to begin with! I defy
anyone to read the text of the U.S. Constitution and find any authority
granted to the members of Congress to regulate health care.

This legislation also provides for access, by
the appointees of the Obama administration, of all of your personal
health care direct violation of the specific provisions of the 4th
to the Constitution information, your personal financial
information, and the information of your employer, physician, and
hospital. All of this is a protecting against unreasonable searches and
.. You can also forget about the right to privacy. That will
have been legislated into oblivion regardless of what the 3rd and 4th
Amendments may provide.

If you decide not to have health care insurance,
or if you have private insurance that is not deemed acceptable to the
Health Choices Administrator appointed by Obama, there will be a tax
imposed on you. It is called a tax instead of a fine because of the
intent to avoid application of the due process clause of the 5th
Amendment. However, that doesn't work because since there is nothing in
the law that allows you to contest or appeal the imposition of the tax,
it is definitely depriving someone of property without the due process
of law

So, there are three of those pesky amendments
that the far left hate so much, out the original ten in the Bill of
, that are effectively nullified by this law It doesn't stop
there though.

The 9th Amendment that provides: The enumeration
in the Constitution, of certain rights, shall not be construed to deny
or disparage others retained by the people;

The 10th Amendment states: The powers not
delegated to the United States by the Constitution, nor prohibited by it
to the States, are preserved to the States respectively, or to the
Under the provisions of this piece of Congressional handiwork
neither the people nor the states are going to have any rights or powers
at all in many areas that once were theirs to control.

I could write many more pages about this
legislation, but I think you get the idea.
This is not about health
care; it is about seizing power and limiting rights.
Article 6 of the
Constitution requires the members of both houses of Congress to "be
bound by oath or affirmation to support the Constitution." If I was a
member of Congress I would not be able to vote for this legislation or
anything like it, without feeling I was violating that sacred oath or
affirmation. If I voted for it anyway, I would hope the American people
would hold me accountable.

For those who might doubt the nature of this
threat, I suggest they consult the source, the US Constitution, and Bill
of Rights
. There you can see exactly what we are about to have taken
from us.

Michael Connelly
Retired attorney,
Constitutional Law Instructor
Carrollton , Texas


If you don't care about our constitution, or
your rights under it, just do nothing.


Thursday, April 8, 2010

Dare I say it??

I think my dizzy spells may be a tad better this mid morning! But only a tad. One could hope anyway. I don't like this feeling at all. It's very scary to be dizzy so often. Yesterday, I bent over to pick something up off the floor and I nearly fell face first. I caught myself on the edge of the counter. Just before hitting the floor. Carly got a good laugh in seeing that! She got a really good laugh in the other day. I sneezed and fell backward. Carly laughed so hard. So did I. Even though it was very weird to sneeze and fall backward, it was funny. And no doubt, quite a sight!

Yesterday, my mom went to the doctor. We have the same doctor. He's awesome. She told him about me and my dizzy spells. And he already knows we have no health insurance right now. He said my mom was describing, what sounded like a terrible case of inner ear infection. Kind of what I was leaning toward...but I don't have a medical degree! Anyway, doc gave my mom some samples of antibiotics and told her to have me to start taking them ASAP. Good thing too, 'cuz last night was horrible. I couldn't do too much. My head was all swim-y feeling. I couldn't type worth a darn. My fingers just couldn't hit the right keys on the keyboard. I handed Paul a bottle of Diet Pepsi and completely miss judged what I was doing...dropping the whole thing onto the floor. Not a pretty sight. Paul had to clean it up...I couldn't bend or squat without falling over.

I had to stopped driving for a few days. One reason being..I nearly killed Carly and my mom and I on Tuesday. We were heading to Carly's dentist appointment. I was feeling so off that morning. I thought it was from getting no sleep the night before. Thanks to the loud obnoxious thunderstorms passing through the area ALL NIGHT LONG! We were driving down the highway...or freeway...or expressway, which ever floats your boat! I put my blinker on, checked my mirror and began to pass a very slow moving truck. Suddenly, there was a car fender at my driver side window. I jerked the wheel..just like you're never suppose to do. I nearly lost control. I jerked back on the wheel again... and then leveled the car off. Scared the CRAP out of me and my mom. I of course told my mom that the car appeared out of nowhere...but, in reality, I miss judged. Big time! Should have had mom drive, but she doesn't drive highways or cities anymore.

Hopefully, things are on the upward swing today. I think they are. I still feel a bit off. But, as of last night, I have had one double dose (per doctors order) of antibiotic in me. I'm still eating Antivert (drug that levels out your equal librium) like candy.

I am hoping Paul's boss will do something to get our insurance back. Although, he is not the most honest man. I've been making phone calls like crazy. The union,,,where I talked to the "big dog", as Paul put it. I've called the benefits people at Paul's work. I've called the insurance company and anyone else I think can get the ball moving. I'm hoping we have insurance back by May 1. I will then cram all kinds of appt's in. Paul and I will be going for our yearly blood work. I need a yearly with the GYN. Thank goodness I had my mammogram in December. I need to get to the dentist and I really need to get to my Cardiologist. Guess I'll be busy.

We pay out of pocket for Carly to go to the dentist. (we have GREAT dental coverage, when we have insurance) I wont let her health/teeth go down the gutter. We will pay out of pocket for costs for her. No matter the price. The rest of us can just wait. It cost me $200 to get her teeth cleaned Tuesday. Last month, I took her for x-rays, because the school said she was complaining of a toothache. She was fine, but that cost me $105. Then I took her to the doc the same day and spent another $50.

Gosh, reading all that makes my head spring! HAHAHA! If I had to say it...I'd say, I'm a tad bit better today.

Have a great Thursday!
and please, excuse any errors you encounter while reading this.. My head is still kind of swim-y feeling.

Wednesday, April 7, 2010

Tuesday, April 6, 2010


So, I've been absent..again! Sorry about that. I haven't felt very well. Dizzy spells. I suspect due to an inner ear infection. However, I'm not a doctor and should not be trying to diagnose myself. If I had insurance, I'd be at the doctor. But, no insurance, so no doctor. But that's another post for another time.

Over the past few days, I've been reflecting. Reflecting back regarding Carly's life. This Easter marked a 5 year anniversary of Carly being inpatient on the 7th floor, of Mott's Children's Hospital. We were inpatient because of a very rare blood infection that kicked in while we were heading to clinic for a regular appointment with Oncology.

While we were in the clinic's lab, this blood infection hit. It hit fast and hard. Carly stopped breathing during a ordinary lab draw. My mom was with us, as she most always is. Mom grabbed Carly off my lap and proceeded to reach into Carly's mouth to pull out a cracker that Carly had been eating. Mom thought Carly was going through the motions of choking. In the meantime, an all out fiasco ensued. To the point that the lab called 911. An ambulance came, doc's from all over UofM came rushing into the cancer clinic's lab. Finally, everyone agreed Carly was stable. Therefore, she was strapped to a gurney and ran through the halls of UofM's basement. Destination, the ER.

Long story short. We were admitted that day. Carly had gone sepsis on us. It happened that quickly. No signs of illness that morning before heading to UofM. She was acting fine. No fever. NOTHING. It hit that fast.

Carly ran a temp of 105 the rest of that day and for 2 days after the fact. All lab work, cultures everything kept coming back negative. She was placed on several IV antibiotics. It was one of the most scary moments that I have ever witnessed. I thought Carly was dying right there in the lab that day.

Finally 4 1/2 days after being admitted, we had a diagnosis: Serratia Marcescens. A potentially fatal blood infection. The reason for fatality; it's resistance to many antibiotics. How in the world, Carly pulled through this is a mystery to all of her doctors. Matter of fact, the head Oncologist at the Ped's Cancer Clinic, came in to see Carly. He told me, "we believe we have the ability to turn this around. It's not to late." Talk about a scary times.

Five years ago, on Easter night, (we had already been inpatient for several days.) I discovered that Carly had no use of her left arm and hand. I was certain she had had a stroke. I begged the 7th floor docs to call someone. Anyone. I wanted her to have a CT scan. I begged and begged. Then, 22 hours later, I told the nurse that if she didn't get a CT scan scheduled ASAP, that I was going to unhook Carly's IV, and take her down to the ER. Well,,,, we were headed down for a CT scan within 20 minutes. This was when we learned that Carly's brain had swollen. We also discovered that, at some point in her life, she had suffered a stroke.

As I look at Carly today. I can't believe it was 5 years ago. Five years ago, we had such a gravely ill child. Five years ago, we were hit with yet more terrifying news regarding Carly's health. Five years ago that we faced a Neurosurgeon who was ready to jump in and open up Carly's head to relieve pressure off her brain. Five years ago, we were sent home from the hospital on 8 different IV meds which had to be given to Carly around the clock. With no help from a home health care nurse.

Often times, I sit and wonder, just how on earth all this could happen to one tiny child. How could one tiny child overcome so many illnesses, so many health crisis? How?

Another reflection this week. The anniversary of Carly's first heart surgery. April 5, 2002 is when I handed my 8lb 8oz., 3 month old over to the the surgical team. Wondering if we would ever look into her beautiful blue eyes again.

Many times, people have asked me how in the world I've done all this. How I've been through all this with Carly. How I haven't lost my marbles...Ashleigh would quickly jump in and tell everyone that I did actually lose my marbles! She may well have something there! The only response I ever give, "Because Carly keeps on marching forward".

Thursday, April 1, 2010

Sunshiny Day!

Yes, that's right the sun is shining here in Michigan today.

With the highs expected to go above 75!!

Spring is definitely in the air.