People do not seem to realize that their opinion of the world is also a confession of character. ~Ralph Waldo Emerson

Just going through my blog and see that I haven't updated anything since mid April. I have a lot to put on here and I will. Eventually.

Paul and I decided we needed a change of scenery and so, we headed to California last week. We went to Yosemite National Park and to Kings Canyon and Sequoia National Parks too. Walked for miles and miles and miles, up and down mountain sides, hiked to waterfalls and even spent a day along the coastal region of Monterey. It's beautiful out there. Fisherman's Wharf, Pebble Beach, and Carmel were every bit amazing and beautiful, as the mountains and the HUGE Sequoia trees.

However, I do believe the best thing that we were able to do, is meet up with 3 of my facebook friends..whom I've never met in person before! These 3 gals are proud mama's to children born with Down syndrome too. Yes, we met their children and we were thrilled and a bit saddened at the same time. I'll blog about the trip in a few days.

The reason I started this blog, was to write about the life our our sweet little Carly. Our struggles. Our health issues. Carly's achievements and her milestones; that many parents take for granted. As of lately, some of those parents have completely blown my mind!

Unsure where to go with this blog, from this point in my life. Part of me wants to keep it going, but another part of me thinks I should wrap it up. I mean really..who wants to keep coming to a blog that is so sad, with very little joy and happiness. But, I suppose, that's life. Life isn't a guarantee of "joy" and "happiness".

The other day, something took place on facebook, which hurt me very much. All because I called out a mama, well 3 mama's, of Ds children, who actually posted that they "hate Ds and apraxia" and "I want a cure for Ds". I mean, really? Seriously? To say you "hate Ds" pretty much goes against striving for acceptance from those who have no experience with Ds and would just as soon see no person walking the earth with Ds. And wanting a cure?? PLEASE... that's like saying you wished your child had not been born.

As I sat on my couch, I bit my tongue for quite a while and perhaps, maybe I should have kept my thoughts to myself. But, they opened the can of spoiled, rotted worms that really made me sad. Not mad..at first,,, although, now I'm pissed!

I sat in my living room that night, missing and wishing that my little girl, who was born with Ds, was here on my lap and then I read a facebook status that literally made my chin drop to the floor. I was suddenly very, very sad. Sad because one of these mama's, who I admired so much, felt the need to put something so insensitive of our children, on her facebook. It was there, in black and white..no excuses could cover the fact that it had been placed on her status.

After that, went on it lead me to do some thinning out of my facebook friends. I thought all us Ds mama's were on the same page. We want acceptance. Inclusion. But how can we get that, if Ds mama's say/type that they "hate Ds" or they "want a cure for Ds"? How does that differ from hearing someone say the "R" word? I'm willing to bet, if one of those particular mama's heard someone say, "I hate Ds"..she'd flip her lid.

Some may think I over reacted on this whole thing. My daughter told me to stay out of other people's drama..But I didn't do anything wrong here. All I did is try to explain how sad that that status on facebook made me. Especially since, their happy, healthy Ds children are ALIVE and mine is not. I tried to remind these mama's of the Down Syndrome Creed. The last line was my point. "I'll do it as YOU do, but at MY own pace" Sadly, they didn't get it and fired back at me with both barrels loaded. Whatever. I guess you learn a thing or two about a person.

We will continue to be "finding our way" as we learn to live without our sweet girl. It's a process that is never ending. My hope, from this point forward, is that parents WAKE up and REALIZE the gift you've been given. All children struggle and we all have obstacles to over come in our lifetime. Remember, you could be in my shoes one day. Don't hate Ds or wish it away. For pete, sake..embrace it!

A worthy cause

Ashleigh and her friends are running in the Children's Leukemia Foundation of Michigan's 5k (click here), in memory of sweet Carly. Team name: Carly's Angels. Reason being; Carly LOVED, LOVED, LOVED Ashleigh's friends! Even tho, Carly is now, likely their angel watching them from above, we all thought the team name was quite fitting. Those girls cheered her on and visited her throughout our experience with this evil, nasty cancer. Carly had more big sisters than any kid I know!

The girls are trying to raise at least $500. I realize most of you who read this blog, are not from Michigan. However, leukemia was a HUGE part of our lives with Carly. She was diagnosed with it in Sept '04 and from that day forward, it was our life. Countless hospital stays, tons of toxic chemo drugs, several surgeries, several bone marrow biopsies, several very near death experiences, many clinic visits and blood draws, X-rays, ultra sounds...the list goes on and on and on.

Although Carly was born with Down syndrome, and stood about an 80% greater chance to develop leukemia, none of us are exempt from this horrible blood cancer. Not me, not you, not your children. This is a very worthy cause and one that will always be near and dear to our hearts.

Ashleigh has participated in the Relay for Life before. She and her team raised a very nice chunk of change! That time, she walked in 'honor' of our sweet girl. Her team will now walk in 'memory'. Which makes us all so very sad.

If you find it in your hearts, to help with this worthy cause the girls would greatly appreciate it. Any amount at all helps. Again, click here, if you care to help out .

Noah Biorkman.

Noah Biorkman.

Noah is 5 years old. He is one of our fellow patients at The University of Michigan's Pediatric Cancer Center. Noah is a very sick little boy. His family is grieving. Even before losing this precious little boy to an unthinkable disease. His family is grieving.

His mother was told the absolute most devastating news. Noah was dying. Noah would not live to see another Christmas. The one Holiday that nearly every single child in the world looks forward to. Noah's mom decided to throw together an early Christmas for Noah. One filled with family and love. Complete with a Christmas tree, decorations and presents.

Noah's mom asked for cards to be mailed to their little boy. Christmas cards, upon the request of Noah! Paul actually heard this request on the radio just the other night. He mentioned to me that Brandon Inge, of the Detroit Tigers was involved. I knew immediately who Paul was talking about. Brandon Inge and his wife are HUGE supporters of UofM's Pediatric Cancer Center. I knew exactly who he was talking about. I quickly jumped online to Noah's carepage. One I've followed for a long time. I realized then that I had not been getting Noah's updates (along with a whole slew of others) and so I began to read. I began to cry. This sweet little boy is losing his battle. Not fair. Not fair at all.

Please hop on over to Noah's carepage and read the latest from his mom. This outpouring of love and support for this family is going way over the lines. Way too much for his family to deal with at this time. All mom asks for is, Christmas cards sent to her son.

Please keep this wonderful family in your prayers. They are hurting, but yet, trying to put smiles on their faces and make a magical moment for their dying son.

IEP meeting, and updates.

So, today we had Carly's IEP. Nothing but a BIG waste of time. We have to continue the IEP next week. Not something I'm looking forward to at all. Nothing was accomplished in a 2 hour meeting. The only thing the 'team' wants to do is argue with me. I'm sooo very sick of this.

As for the legal part of it. I did have an attorney present at the meeting. I do feel this will likely go into a hearing. All because the stupid school will not meet Carly's needs.

I do have several other issues with the school that a judge would really frown upon. However, I don't want to get into too much of it right now. Lets just say, this school has stepped WAY over the line on many issues regarding Carly.

We could use a few prayers in the up and coming weeks. Prayers that all goes smoothly and we can avoid any court proceedings. But, like I said, I do feel we are headed to a hearing.

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Carly is still home from school. We pulled her out due to the confirmation of Swine flu at her school. She did get the shot on the 24th. However, it takes 14 days to start to do it's job. Hopefully, she will be back to school on the 10th.

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Update on Sarah, my aunt's niece. Her whole ordeal started on Oct 15. She is still in ICU. Still on the ventilator. She ran a temp of 104.8 (under arm temp) for one solid week. It is down now to 102.6. Sarah is still very critical. It doesn't look good for her. Please keep Sarah and her family in your prayers. She just turned 30, while in ICU.

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Family issues, other than Carly. My mom is having some health issues. It looks as if she is in kidney failure. To what extent? We don't yet know. For what reason? We don't yet know. She has an appt with a specialist and will be having an ultra sound to determine just how much failure she has. Also, to see if it's one or both kidneys. Last week she met with the same specialist and went over some test results that were done previously. He did confirm all of the tests point to kidney failure.

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My nerves are frazzled right now. Let's see, I have the school issues going on. I have my mother's health issues to worry about. Oh, and Carly has up and coming Cardiology and Oncology appt's on Nov 12. She will be having an Echo and the whole work up. I hate those
Echo's. They scare the crap out of me. I'm always such a wreck and just know they are going to tell me bad news. Then of course, there's Oncology. 'Nuff said!

Guess that's about it, plus my battery on my laptop is dying.

Swine Flu.

No, Carly doesn't have the swine flu. Yet. I'm doing my very best to keep her from getting it. We're staying home. A lot!

On Saturday, Paul and I took Carly to the local health dept., to get her H1N1 shot. We stood in line, in the windy, rainy, cold morning weather, for 1 hr & 15 minutes. Seemed kind of silly to be standing outside in that kind of weather trying to protect her from getting this awful flu. She did receive the shot. Like always, she did just fine. Climbed up on Paul's lap, stuck her arm out and then said "duh" as she always does after getting poked. The nurse got a kick out of that!

From there, we stopped at a store. Ashleigh was home for the weekend and requested a home cooked meal! I needed to pick up just a couple of things to make what she had requested; chicken fried chicken. I had Paul keep a very unhappy little girl in the car. Trying to avoid any unnecessary germs.

We finally got home and all was going well. I was happy that Carly had no signs of the after effects that can go along with the flu shot. Carly played and followed Ashleigh around all night. Finally giving in to sleep about 11:30. I put her to bed and headed to bed myself. I had a hard time sleeping, due to many school issues that are going on right now. I had just fallen asleep when I heard her cough/gag. I knew what was coming. Carly gags just before she vomits. I flew out of bed and grabbed her...Carly does not do well with vomiting. It completely freaks her out. I looked at the clock, it was 1am.

I got her up. Cleaned her up. Then, it happened again. And again. And again. Right up till 5:30am. Every time she would finally fall back to sleep, I would lay her down and within 20 minutes, she was up vomiting all over the place. At 5:30, I yelled for Paul to get up, I needed some help. I wanted to find the "What you need to know" sheet from the health department regarding the side effects. I couldn't find the stupid paper anywhere. I even went outside to the car looking for it. So, I headed to the computer. It took FOREVER to get online...my computer was running so slowly. I finally did find a sight that did confirm my thinking. I had thought that maybe Carly were having dizzy spells last night. Especially when I would lie her down and she would quickly vomit. Dizziness is a side effect of the shot. Right along with vomiting. Although these side effects are not common. Leave it to Carly to pull out all the stops!

She is much better today. Thank goodness. Paul actually stayed up with her at 5:30 so I could finally get some sleep. At about 7, he brought her in to lay down with me. He said she had been doing really well. Drinking, playing and even slept a little on the couch. She climbed in bed with me and slept until 8:30. She hasn't had much of an appetite, but has eaten a some jello and is drinking. Which is what I really worry about.

Unfortunately, Carly will require another H1N1 shot in 28 days. Due to her age and her underdeveloped immune system, (which all kids have, not just her) she is required to receive a booster shot. Boy do I ever dread that.

Due to the many confirmed cases of H1N1 at Carly's school, Paul and I have decided to pull her out for a couple of weeks. I can't see putting her in harms way. There are just too many complications that go along with this flu. I did call Cardiology last week, after finding out about confirmed cases at her school. I was told quite frankly, that Carly could suffer some severe complications due to this flu. Severe to the point of ICU and breathing tubes. So...that sealed the deal. Carly is out of school until this vaccine has time to kick in. That's 12-14 days.

Needless to say, we will be sticking close to home. Carly has an upcoming appt., at UofM. She has cardiology and oncology. I will be calling both places before the appt's. I will NOT be taking her into any infested areas. We may just have to reschedule both of those appts.

I still do not regret getting her this shot. I'm terrified of the swine flu. My aunt's niece, who is in her 20's. Is in very bad shape right now with complications of the swine flu. She is in ICU on a ventilator. Very scary stuff. This young gal doesn't have any underlying health issues..to my knowledge. Her name is Sarah, please say a prayer for her and her family. She is not well.

H1N1-Swine flu vaccination concerns.

There is much debate going on right now regarding whether or not we parents will be getting our kids the H1N1 or as I call it, the Swine flu vaccine. I'm surprised by how many people are opting out of getting this vaccine. However, I do realize it is of great concern, since it's a 'first' in terms of vaccinations. I myself am very concerned.

After reading up online and researching this vaccine containing mercury, I decided to email our NP (nurse practitioner) at the cancer center. I wanted to get her take on it. I thought I'd share that email response from our NP with you all. The blue is our NP's reply. What the CDC has to say is below the following.

Hi Joany-
I am glad that Carly is doing well.
We are recommending that kids get the H1N1, particularly recommended
for kids with malignancy (which doesn't include Carly) but also kids
with cardiac issues.
Most of the vaccine forms contain thermerosal (a form of mercury)-both
the seasonal and the H1N1. Really this vaccine basically is no
different than the season flu shot, except it is modified to that
particular virus; this is the same thing that is done each year in that
the new seasonal flu shot is modified each year for that particular
years virus.
I have copied below what the Center for Disease Control has to say
about the thermerosal. Hope this helps.
Judy

What the CDC has to say:
Will the 2009 H1N1 influenza vaccine contain themerosal?
The 2009 H1N1 influenza vaccines that FDA is licensing (approving) will
be manufactured in several formulations. Some will come in multi-dose
vials and will contain themerosal as a preservative. Multi-dose vials of
seasonal influenza vaccine also contain themerosal to prevent potential
contamination after the vial is opened.

Some vaccine manufacturers will be producing 2009 H1N1 influenza
vaccine in single-dose units, which will not require the use of
themerosal as a preservative. In addition, the live-attenuated version
of the vaccine, which is administered intra-nasally (through the nose),
is produced in single-units and will not contain themerosal.

I have concerns about the use of themerosal. Is themerosal still being
used?
People have a right to expect the vaccines they receive are safe and
effective. CDC and FDA also hold vaccines to the highest standards of
safety. That is why CDC and FDA continually evaluate new scientific
information about the safety of vaccines. Since 2001, no new vaccine
licensed by FDA for use in children has contained themerosal as a
preservative, and all vaccines routinely recommended by CDC for children
under six years of age have been themerosal-free, or contain only trace
amounts, except for multi-dose formulations of influenza vaccine. This
was done as a precautionary step and not because there was evidence
confirming that themerosal-containing vaccines were causing health
problems. The most recent and rigorous scientific research does not
support the hypothesis that themerosal-containing vaccines are harmful.


Themerosal is an important preservative that protects vaccines against
potential microbial contamination, which may occur in opened multi-dose
vials of vaccine. Such contamination could cause serious illness or
death. Since seasonal influenza vaccine is produced in large quantities
for annual immunization campaigns, some of the vaccine is produced in
multi-dose vials, and contains themerosal to safeguard against possible
contamination of the vial once it is opened.

Three leading federal agencies (CDC, FDA, and NIH) have reviewed the
published research on themerosal and found it to be a safe product to
use in vaccines. Three independent organizations [The National Academy
of Sciences’ Institute of Medicine, Advisory Committee on Immunization
Practices (ACIP), and the American Academy of Pediatrics (AAP)] reviewed
the published research and also found themerosal to be a safe product to
use in vaccines. The scientific community supports the use of themerosal
in influenza vaccines.

Is themerosal safe when used as a preservative in vaccines?
CDC places a high priority on vaccine safety, surveillance, and
research. CDC is aware that the presence of the preservative themerosal
in vaccines and suggestions of a relationship to autism has raised
concerns. These concerns make the decisions surrounding vaccinations
confusing and difficult for some people, especially parents. Numerous
studies have found no association between themerosal exposure and
autism. Since 2001, no new vaccine licensed by FDA for use in children
has contained themerosal as a preservative and all vaccines routinely
recommended by CDC for children under six years of age have been
themerosal-free, or contain only trace amounts, except for some
formulations of influenza vaccine. Unfortunately, we have not seen
reductions in the numbers of children identified with autism indicating
that the cause of autism is not related to a single exposure such as
themerosal.

The federal government is committed to assuring the safety of vaccines.
This is achieved by FDA oversight of rigorous pre-licensure trials and
post-licensure monitoring by CDC and FDA. This commitment not only stems
from our scientific and medical dedication, it is also personal – for
most of us who work at CDC are also parents and grandparents. We too,
place tremendous value on the health and safety of children.

Still unsure? Me too. However, I have to look at the big picture with Carly. #1, her cardiac issues. This flu could be really bad for Carly. Is that a chance I really want to take? NO. Does it make it any easier to go ahead and have her vaccinated? NO. I really don't like the fact that I need to make this decision. Although, I do know that I have to do my very best to keep this little gal healthy. If she were to get this flu, followed by complications of this flu, then I would never forgive myself. It would be my fault. I'm very torn over this. I'm very concerned having her get the vaccine, but I'm getting more and more terrified of the stupid swine flu.

I'm hoping and praying the CDC has the prediction of the swine flu all wrong. I hope it's as it was when it first reared it's ugly head here in the U.S.A . MILD.

What kind of world are we living in?

I often check out the news online. Whether it's our local news or national news. I just never seem to be able to sit down long enough to actually watch the news at the time that it's broadcast. Plus, Carly pretty much owns the T.V in the house. That's not really true. It's actually dinner time around here when the news is on. But Carly does have dibs on the TV most nights!

CNN's web site is one I frequent. The other night I read an article (here) that really has bothered me. Likely because I have a child with a cognitive disability. I'm sure once you read the article, you will be bothered by this too. Whether or not you have a child with a disability. This is just plain sickening.

I have often worried about people being violent toward Carly. Be it bullying...which I really do worry about now that she is in school. Or the unthinkable violation against her. Knowing that it's happening more often just breaks my heart. What kind of a world are we living in? A very scary one by the looks of it.

Makes me want to put Carly in a bubble and keep safe from all the awful things that are going on in this world today. To me, this is the unthinkable. Violating the disable in any way shape or form. Seriously. What kind of world are we living in?

Flu season. Flu shots.

*******UPDATE******* I will be taking Carly in for her flu shot after school today. I had to fib a little. So, I'm sure I'll go to Hell. I told the receptionist that UofM insist that Carly have her shot ASAP, due to her allergy flare up. It's not really a fib. I know UofM like the back of my hand. This is what they would have said, if I would have called them....oops!


It's that time of year again. The time of year where everyone scrambles around trying to find a doctor or clinic to get a flu shot. Why is so darn hard to find a place to get a flu shot anyway? And why do they cost so much? Carly needs hers for obvious reasons. The main one being her heart issues. This year, I find myself a bit nervous about Carly getting the flu shot. First of all. I called the pediatricians office on Monday to see if they had any of the 'regular' flu shots in yet. They do. I was excited, for a second. I told the receptionist that Carly, with her medical history needed one. I was told that they could do it the first week of October. Really??? Hmm. I have, according to the doc's a medically fragile child who NEEDS a flu shot. Why, if the shots are in do I have to wait until the first week in October?? I did question that. I was then told that Carly could get her shot sooner if I would like. I'm thinking, oh good the lady understands the importance of Carly getting this shot sooner rather than later. Until I was told to bring her in on the 25th of September. WHAT??? Seriously, that really isn't much sooner. Sheesh! I also questioned when the H1N1, or as I call it the swine flu shot would be available. I was told, not until mid October. I'm really nervous about this one. Probably why I'm so worked up about the 'regular' flu shot. Everything I've read says that all kids/young adult up to the age of 24 need this flu shot. Especially the "medically fragile kids". Is anyone else as nervous about this new flu shot as I am? I really don't like the idea of Carly getting a new type of flu shot that really doesn't have much history behind it. Sure, they did a study, but I haven't found whether or not it was even completed. If so, I would really like to know the findings. Sure, I know I have to do my part and protect Carly best I can. Which means, following the recommendation of the CDC and of course all of her doctors. But for some reason, I'm really nervous about it this year. I'm calling the pediatrician again today. I want the darn flu shot already. Carly is battling allergies and I'm scared to death it will turn into a sinus infection like usual. If it does, then no flu shot until she is better. That could take weeks. I'm curious as to what your opinions are on the flu shot. The regular one and the new one. Will you be getting your kids in for one or both? Will you be getting yours? If so, is anyone else as nervous over it as me? Probably not. Ashleigh tells me all the time that I'm paranoid. Umm, sorry...just the way it is when it comes to health issues of concern with Carly. I'd say this is a HUGE health issue concern. So, yeah ~ guess I'm entitled to being nervous and a little paranoid Right? I hate flu season.

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.**