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

Sunday, October 25, 2009

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.

Thursday, October 22, 2009

My lil punkin...

....with all of her pumpkins!

Wednesday, October 21, 2009

My hand was forced..

We will be seeking legal representation for Carly's rights.

I'm so very sad that my hand was forced. It shouldn't have to be this way. Hard. Complicated. A mess. It breaks my heart into a million little pieces to have to go this route. But, my heart breaks each time I think that Carly is not being treated fairly. Not being educated to a level that is appropriate for her. My poor little girl. She is so very bright. So very able. So very eager. So full of potential. Learning is what she loves to do. Every day. All day. She works so hard at every task she takes on. She does her very best at all she does.

Today's decision comes from another observation done by my mom. Mom and I are taking turns each day for the next couple of weeks...or how ever long need be, observing Carly at her school. Today, mom observed Carly during speech. Mom reports that it went quite well. Carly did a good job. Said words that she was suppose to say. Did all of her sounds. But, was stumped by some flash cards. These flash cards were action type. Such as throwing a ball, running, walking..and so on. Carly did several correctly and suddenly hesitated. The card that threw her was "walking". So, the speech teacher took both of Carly's hands and had her tap her fingers along the table, in a back and forth pattern. While doing so, she told Carly, "walk, Carly walk".

After the session, the speech teacher asked my mom how she thought things went. Mom told her good. But, she also told her that if she would have used the sign for walk, a light bulb would have gone off in Carly's head. Carly would have made that connection. The speech teacher said, "I will not use signs with Carly" and "I'm here to get words out of her mouth and that's it". I was floored and so was my mom.

After the speech session Carly was returned to class. Mom walked down to the classroom and watched from the door window. Neither the teacher or the aide new mom was watching. Carly was suppose to be working on some sort of activity. Well, likely she didn't understand it. I don't doubt that. However, if someone would take the time to walk her through it...she would get it. I have no doubt about that. The solution; give her a 'time out'. The aide said, (mom could hear this as the door was partially open) "well Carly, we're going to the bench". So yes, they put my little girl in time out simply because she didn't understand what she was suppose to be doing. Carly was not acting out. She was not disruptive to others. So, why on earth put her in time out?

Paul just called me from work. We talked quite a while about this. He's very upset too. Ashleigh called soon after. She is FUMING MAD. Ashleigh is working at a center for disabled adults. She is floored by the way the school is treating Carly. She is just as pissed and heart broken as I'm. Her words were, "mom, get a lawyer". So, that's exactly what we are going to do.

I told Paul earlier, I'm the one who has always saved Carly. I've walked side by side with her through each of her battles to live. I watcher her die three different times. Yes. 3 times I watched my daughter die. Flat line. Die. I've always been there to comfort her. Always. I'm the one who would save her. Me. Mom. It kills me to know that Carly must feel like I've abandoned her. Sending her to school where they are not doing right by her.

So, the school has forced my hand. No more will they mistreat my daughter. Punish her for doing NOTHING wrong. No more, will they fail to provide an appropriate education. Deny her first language..signing. I will not allow them to ruin my daughters self esteem. I will not allow them to cause my very mild mannered daughter to develop behavioral issues. This is going to stop. They will do this no more. NO MORE!

Sorry for the ranting. One day soon I hope to have pictures and happiness to share with you all. But for now, I'm pissed. I'm sad. I'm ANGRY!

Monday, October 19, 2009

School = Headaches.

This morning I dragged Carly out of bed...she would have rather stayed in her bed under the covers, where it was warm and cozy. Who could blame her? It's a chilly Monday morning after all.

Much to the schools dismay, Carly will be starting back full days today. I had to finally put my foot down and tell them that this is my decision, not theirs. I haven't felt good about these partial days ever since we started them on Sept 23. I've felt Carly is missing out on learning, socialization (which is very important) and all of her specials (gym, music, art). To me, that just doesn't seem right. It seems to me as if she is being cheated out of her education. One that she is entitled to.

Last Thursday I ticked off the Special Ed Director. Too bad, is what I have to say. I spoke my mind. Well, actually I emailed her because I could NOT get her attention. I sent a copy of that email to the Principal too. So of course they called me in for a meeting. What they didn't know was, I was bringing my mom as a witness to the meeting. I've learned, NEVER go alone to a meeting at the school regarding your child. Never. EVER.

At the meeting, the very first thing that took place was...the Spec Ed Dir jumping all over me. Scolding me like a child for speaking my mind. I was told I insulted the speech teacher in the email that I sent. I did no such thing. What I did do, and I pointed this out to the principal & special ed director, was quote the speech teacher. Word for word quotes. The quotes are all negativity toward Carly. Negativity that I have heard from this speech teacher since Carly started going to school here in Kindergarten. The only words this speech teacher says to describe Carly are, "isn't", "can't", "doesn't", "not", "won't"...I think you get the picture here. Quite honestly, I've had enough of her negativity.

Let me tell you a little about this speech teacher. She was brought in out of retirement to work at our school. She used to work at a hospital rehab center for kids. She is older. Very unpleasant. Grumpy may best describe her. She is not open to signing, which Carly does 90% of the time. She tells me that signing does not lead to any speech. She tells me signing isn't recognized as a second language. I feel as if she is afraid of signing. She is set in her ways of 'old time teaching'. Fine for some. But it's not going to work for my kid.

Back to the meeting. I did NOT sit back and let this Special Ed Dir continue on with her scolding. I spoke to her firmly. Told her I was Carly's advocate and I would speak my mind any time that I see fit. I gave it right back to her. She isn't going to come at me with both barrels loaded and not get it right back in return.

Since Thursdays meeting, I've been researching, with a fine tooth comb, Wrights Law among other laws regarding schools and special need students. I'm sure the Spec Ed Dir knows these laws as well. I don't like to read that you basically need to kiss the team of educators, butts. I have tried and tried to communicate in a civil manner with the 'team', but that gets me no where fast. If you want to get the attention of the 'team' you have to get nasty and defensive. Sad, but so true. I had to point out things that the speech teacher was saying just to get a sure fire meeting. It worked. I got the meeting. It was worth it, even if I did get scolded like a child. Which by the way, I made clear that it will never happen again. The scolding I mean.

During the meeting, it was determined that Carly would go back to full days. The school was told that I will be (or my mom) observing Carly in her classroom, resource room and during speech. We will do this often. I don't think the school likes to be watched, but too bad. They are not doing right by my daughter and therefore, they need to be watched.

The school continues to drag their feet with getting an interpreter for Carly. One that is needed. Seriously, how can they know what Carly is capable of, if no one in that school signs???? Carly has no problem understanding what people are saying. The interpreter is for the school to know just what Carly is signing/talking about. How can Carly participate in any type of classroom discussion if they don't have a clue about signs? ? She can't.

All of this frustration with the school has caused me to have some massive migraines the last few days. I'm tired of the fight. A battle that should not have to take place. All due to the fact that I have a daughter who was born with Down syndrome. A daughter that deserves and is entitled to an education just like everyone else. As the law clearly defines. A daughter who deserves to have her needs met while at school. A daughter who is eager to learn. Capable of learning. Sadly, I know this is only the beginning of our battle regarding Carly and her education.

It breaks my heart every day when I send her to school. I know that she gets frustrated not being able to talk like her classmates do. Let's face it. Carly is different in many ways from her peers. Even though I use the phrase "More alike than different" quite often. The reality is, she is different. And I know that Carly knows she is different from her classmates. She knows she has limitations, even in the way she plays on the playground. The kids know that Carly is different than they are, but thankfully, I believe they realize that she is more like them than she is different. They see that she requires assistance in areas that they don't. However, the kids see that Carly likes to color, just as they do. They see that she likes story time, just as they do. They see that she likes to play on the playground, just like they do. She writes her name and is beginning to write words...just like they do. If it's so easy for the kids to look beyond the differences, and see that Carly fits in and that she is capable...why is it so hard for the school to see it??

I'm just not convinced that the school really wants Carly there. I've cried over this so many times. When the teacher found out that Carly was returning to full days she sent me a note. Mind you, these last four weeks of partial days, the teacher has sent me NO notes telling me about Carly and how she is doing. The note said "Carly is very tired during the afternoons". And "Carly kept asking for momma today". The real kick in the gut was when the bus driver brought Carly home that day. She went on to tell me that Carly's classroom aide brought her to the bus and informed the driver that "Mrs. R (teacher) doesn't think Carly is ready for full days". I can't get it out of my head that that's just the teacher not wanting Carly in her class. For whatever reason. Maybe she doesn't want to modify work. Maybe she doesn't want to slow the pace down for Carly. I don't know. I just can't wrap my brain around any of this crap.

My fear is that all of this negativity from the school will rub off on Carly. I fear that she will develop behavioral issues. Paul and I are trying not to talk about it in front of her. She is like a sponge. She takes everything in. If Carly does develop behavioral issues. I really do think I will blow my top. The school will then, likely wish they never heard the name Carly George.

Schools should not = headaches!

Friday, October 16, 2009

I've been tagged.

I've been tagged by Sasha to play along in the name game. Although I just realized that Tina tagged me last Saturday. Sorry Tina, I was gone away last weekend and somehow I completely missed you tagging me!

This has been really interesting, reading up on all of our bloggy friends and how they all came up with names for their children. Everyone seems to have a story behind each name. We are no different.

Ashleigh - our first born. Soon to turn 23. Yikes! Paul and I tossed around names like crazy for her. We had no idea as to whether or not we were having a girl or a boy. Way back then..LOL, doctors did not believe in doing ultrasounds unless problems were taking place. I had no problems, so I didn't get to have an ultrasound. Oddly enough, I didn't feel we were having a boy. We tossed around a couple of boy names, but I just didn't have that feeling. So, we focused more on girl names. We tossed around several. I would sit and write the names over and over. (I did this with all the kids names) To see if I liked how it looked on paper I guess. I remember tossing around Alyssa, Nichole and Ashleigh. I really wanted to name her Nichole. Paul really didn't want to. He liked the name Ashleigh best. He told me we named her Ashleigh, then I could use Nichole for a middle name. I didn't like that idea. I finally agreed to Ashleigh, but I got to pick the spelling. Again, I wrote the name over and over. With every variation you could possibly imagine. I decided on to spell her name with 'leigh' at the end, instead of the typical 'ley'. Now for her middle name...I really went out on a limb here. I decided to give her my middle name. Even though I HATED my middle name all through school. However, I really wanted to save the name Nichole for our next little girl. So, Ashleigh Louise it was. My grandpa said Ashleigh would be a senior in high school before she learned to spell her name! He couldn't figure out why I didn't just spell it Ashley.

Bradley - "Brad" as he goes by now. Brad is turning 20 in a couple of weeks. That freaks me out too! With Brad, I never had the feeling I was having a girl. Weird as that may sound. I just didn't think he would be born a she! I actually had a funny dream..well I had sevearl with him. But each time, the baby was a boy. The funny dream was, Brad kicked his foot through my stomach and I just reached down and pushed it back in. LOL...the kid kicked the daylights out of me! I did have 2 ultrasounds with his pregnancy. One at about 20 weeks. Then one a couple of days before he was born.(I was 10 days over due). Neither time did he cooperate so we could get a peek at the sex of the baby. That little stinker, turned over and crossed his legs both darn times! I couldn't believe it...again, we had no idea. Except for the gut feeling that I had had all through my pregnancy. It was such a strong feeling, we hardly ever discussed having a girl or picking a girl name. I did still have Nichole in mind. But, Kelsey was weighing in awful heavy. Until my cousin had a baby a couple of months before my due date..she used the name Kelsey. I remember saying, well this baby had better be a boy because if he's a she, she will have no name. We tossed around the name Austin. Paul worked with a guy that he was pretty good friends with and his name was Austin. I wasn't too sure about it. All I could think of was Texas!! Then, Paul suggested Bradley. He said, because it ended with the sound 'ley' it would go good with Ashleigh. And being we had a toddler whose name started with an 'A' and ended with the sound 'ley' adding a name that started with a 'B' and ended with the same sound would be kind of cool. I kind of liked that idea. The problem was, my mom had lost a baby many years ago. A baby boy who they named Bradley. Paul did not know this. He knew that my mom lost a baby, but we never even talked about the name of the baby. So, first I needed to talk to my mom and ask her how she felt about it. I had friends tell me NOT to name by baby after a baby that had died. I tried to explain that we were not naming our baby after my brother, it just so happened that Paul really liked the name. Honestly, Paul had no idea of my brother's name. My mom said she thought it would be fine to name our baby Bradley. So, that was it. Bradley it would be. As for his middle name, we chose Paul - giving him his dads first name as a middle name.

Carly - Well, she was our little surprise. We really had no plans on having another child. But we are so grateful that we did have her. Her name was a bit tougher. We included Ashleigh and Brad in this entire pregnancy. We wanted them to help us come up with names. It was both A & B who insisted that we use a 'C' name that ended with the sound 'ley'. A said, "mom you cant change it up now". They both felt we needed to find a C name. Well, that was not so easy. We could only come up with Charlie for a boy, but neither A & B were thrilled with that boy name. At about 20 weeks, we did an ultrasound. We were told "it's a girl". Actually, the tech said, "well, I've got a perfect shot and I don't see a dilly whacker". I nearly peed all over the table due to laughing so hard at that comment. So the search for a girls name was underway. The names we had picked were, Caylee, Carly & Callie. I really wanted to name her Callie. It was my grandpa's name. The day Carly was born, we still had not decided on a name. We just knew she would be named one of the three in the running. After she was born, the kids came to the hospital. Paul took them to the gift shop. They were looking for a "sign" as to what name we should give her. Well, out of the three names we had picked out, the only one that was anywhere to be found on anything in that gift shop, was Carly. The kids were convinced this was a sign. And so, Carly it was. Her middle name (I'm still kicking myself over) was picked because we liked it. It's Elizabeth. However, I now wish I would have given her my grandmother's middle name of Lucille. Drats. I was a tad bit upset afterward. Oh well. Elizabeth sounds nice with Carly.

That's it. That's the way I came to be known as A B and C's mom! If I'd a known we were going to do this whole A B C name thing ending in the same sound. I would have spelled them all ending in 'ley'. Oh well. They are each different endings. Not quite as clever as Renee was in naming her kids!

So....I'll tag a couple of people. Feel free to pass it up if you wish, but it was kind of fun to sit and reminisce on how our kids were name.


Thursday, October 15, 2009

Thankful Thursday & Looking back.

Fall has arrived. Winter is nearing. Along with that, comes the dreaded cleaning of the medicine cabinets. Out with the old cough meds., cold tablets, expired Tylenol, etc..In with the new. And yes, I said cabinets. I have 2. One over my stove and one in the main bathroom. Reason being, we have tons of medication in this house. Something I wish we didn't have the need for. But thankful for the meds without a doubt.

I can not even begin to describe, what I felt when I found this bottle at the very back of the medicine cabinet. In all honesty, I knew that I had saved this bottle all those years back. Guess I saved it for a reminder. Strange as that may seem. A bitter sweet reminder.
(click on any image to enlarge)
The following images were taken on Carly's second day of being placed on ECMO. This picture was the only picture we could get up close. I believe the nurse took this one for us. You see that little yellow duck? That was with Carly throughout her 30 day ordeal. She loved that duck. She always sucked on the bill (before surgery that is). The nurses made sure it was near her face every day. These pictures are very difficult for me to look at. In fact, I didn't look at them for many, many months after bringing Carly home from that hospital stay.

Carly was in grave danger. She actually did flat line and had to be brought back. Per my words, "I don't want her to die". I recall hearing the doc in charge of the ICU that night hollering, "get ECMO going, mom doesn't want her to die". Those words will NEVER be erased from my memory.This machine is very intimidating. Overwhelming may describe it better. ECMO is big. It's scary. It's dangerous. It was also our only option. Carly would have died if not for this machine. If you look closely, Carly is in the bed that is surrounded by all this machinery. I think if you click on these pictures, you'll be able to see her tiny little head with dark hair.

This picture even shows Ducky too. You really can't tell by all the pictures, but at one point during Carly's 3 1/2 days on ECMO, my brother came in and counted all of the tubes and wires going into Carly's tiny little, barely 9 pound body. The total....21!
Here's a better shot of her head. I would pull a stool up to the end of the bed. I would sing Carly lullabies and kiss her forehead. Hours and hours would pass. I was thankful. So thankful that we had this chance for Carly. I prayed. Prayed that she would suffer none of the ramifications that can coincide with ECMO. There are so, so many.
Posted by Picasa

We couldn't get anywhere near the rest of her body. Only her sweet little head. I was so grateful for that. Not sure who decided to place her head at the end, but I'm so thankful to who ever did this. No doubt, it had nothing to do with them thinking of me...I'm sure it had to do with the best possible set up for Carly and that great big machine.

I'm very thankful for this drug. It no doubt played a huge roll in saving Carly's life after having her first heart surgery. Carly wasn't started on Viagra immediately following her surgery in April '02. The reason it was ever even started on Carly, was due to her crashing/coding 13 hours after surgery. Caused by a pulmonary hemorrhage.

This drug was brought on board after ECMO was unhooked. It was being used to expand the vessels in Carly's lungs. The vessels that were so badly damaged during her hemorrhage. Carly would remain on Viagra for over a year. She was s l o w l y weaned off from it. As you see, if you click on the pic of the medicine bottle, she was on a teeny tiny dose, but it was 4X per day. I had to mix it up for her. I would dissolve the pill into a prescribe amount of water. Mix it up. Pull the exact amount needed for her dose into the syringe, give it to her immediately and then toss the remaining mixture. They would not allow it for future use because they had no data backing up whether or not it would still be "potent" and able to do what it was intended to do.

These little blue pills were very costly. I'm so thankful that we had insurance that covered it. Even though the cardiologist had to fight with the insurance company every 3 months to get the bill paid. The cost for 1 month worth of Viagra (using 4 pills per day) $1,000.00 and some odd cents. That was back in 2003...can't even imagine what the cost is today.

As far as the ECMO goes. Carly came off of it without having any real big issues. There can be many complications going on and coming off of ECMO. The only thing that was a complication for Carly was that she got addicted to very high levels of numerous pain medications. She actually went through terrible, terrible withdraws. So terrible that she would thrash in her bed (of course several of the nurses thought it was all because of Down syndrome. Idiots!) and all her dark hair came out. She came home bald.

Fast forward, March 2005. Carly was in Motts Hospital with a blood infection. During her chemo time. This is when her left side went limp on us. A CAT scan was ordered to view her brain. What they found shocked all of us. Yes, Carly did in fact have a stroke. Years ago as we would eventually find out. Nothing pertaining to the limpness at that time. Her brain did swell from that blood infection. The swelling did cause damage. The damage being in the spot that controls her left arm/hand. It was merely a coincidence that they found that old stroke. Our Neurosurgeon strongly suspected this was a direct result of ECMO.

So, as I go about my day today. I will remain thankful. Thankful for Viagra. Thankful for ECMO. Thankful that God, ultimately healed our daughter. Yes, the machines and drugs played a huge roll, but very few of her ICU docs thought Carly would survive this entire heart ordeal. One doctor in particular..I remember him to this very day. He was NOT one of my favorite docs. He was full of gloom and doom. Anyway, as Carly was wheeled out of ICU on her way to the main heart floor...this doc stopped me. He said, "This is a miracle." He then looked at me and asked, "do you understand what I'm saying?" I said, "yes". He came back with this response, "We didn't do this, Carly was healed by a much Higher Up".

Ahh.....healed, yes she was. For that, I am forever thankful.

Wednesday, October 14, 2009

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.

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
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

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.

Tuesday, October 13, 2009

My Menu Plan.

It's that time again. In more ways than one! Time to plan for another couple of weeks worth of meals for the family. This time is a rough one though. I haven't felt all that great the last couple of days. Not sick, just that time of the month thing going on. With that being said, it's been tough to get my menu planned out. Altho., I did, and here it is.

This weeks menu:

  • Mon - fried egg sandwiches & fruit (yep, I was slacking)
  • Tue - goulash, potatoes & green beans
  • Wed - crock pot roast w/noodles & veggies (didn't have last week)
  • Thu - baked spaghetti, toss salad & garlic bread
  • Fri - PIZZA night
  • Sat - burgers & fries
  • Sun - hot beef sandwiches, mashed taters & gravy w/veggies (left over beef from Wed)

Menu for the week of 10/19:

  • Mon - chicken broccoli casserole & brown rice
  • Tue - homemade potato soup, tossed salad & rolls
  • Wed - tacos, corn cake casserole
  • Thu - meatloaf, homemade mac & cheese & veggies
  • Fri - PIZZA night
  • Sat - left overs
  • Sun - chili

Today, I'm giving you a recipe for the potato soup that I make. I've been making this for several years. We all LOVE it. It's easy and it's very good. Great for a chilly fall day. I got this off of the site All Recipes.com It's actually called Chunky Cheese Soup, but we just call it Potato Soup!

2 C Water
2 C Diced potatoes (peeled)
1/2 C Diced carrots
1/2 C Chopped celery
1/2 C Chopped onions
1 & 1/2 tsp salt
1/4 tsp pepper
1 C Cooked cubed ham
1/4 C Butter
1/4 C Flour
2 C Milk
2 C shredded Cheddar cheese

In a large pan, add water, potatoes, carrots, celery, onions, salt & pepper. Bring them to a boil. Reduce heat & simmer 30 minutes, or until veggies are tender. Add ham to the pot of veggies.

In a medium pan, melt butter. Then stir in the flour until smooth. Slowly pour/stir in the milk. Bring to a boil. Cook and stir for 2 minutes, or until thickened. Stir in Cheddar cheese. Pour this mixture into the veggie/ham mixture and serve.

I always double and sometimes even triple this recipe. When I do, I use a large stock pan for my veggies and ham. It's really good and super easy to make.
Hope you give it a try. Enjoy!

Monday, October 12, 2009


We're back home. Ashleigh, Carly and I went with my parents to visit my brother and his family who live in Illinois, for the weekend. We got home last night. It was A quick trip, but it was a nice visit.

Now, I'm finishing up my laundry and trying to function with these stupid monthly cramps. Ugh! I really hate these darn cramps. They hurt like the dicken's. Plus, I always feel so awful. Yuck! I do take Motrin 800 and it does help quite a bit.

Last Thursday Carly went in for a physical with the pediatrician. She didn't need any shots, just the physical. I did take in a urine specimen to be checked. The school had called me on Thursday afternoon to tell me Carly had wet her pants. So unlike her. I knew she was going have a UTI. When I collected her specimen, Carly looked at it and said, "apple". She meant that it looked like apple juice :o) I was right. The doc ran the test. She is now on a 10 day course of antibiotics. She also has a viral thing going on causing a runny nose and cough. However, those both seem to be better today.

I've been trying to deal with the school again. Boy do I get worked up with those people. They want to do testing on Carly. It's called the Gazelle Test. I've been researching it and decided not to allow this test to be done, as of now. Being that Carly's main form of communication is sign, there is no way to accurately test her. Not until someone is hired who knows signs. I think they would be knocking points off of Carly's scores and that isn't fair. This little girl knows tons. Her receptive language skills are dead on for her age. But her darn speech takes points away from any testing. Especially if not one single person knows/understands the signed responses that Carly would likely give.

Other than that. We are trying to get back into the groove of things. Laundry, house work, menu plans, catching up on all the blogs I follow, etc......

Happy Monday All!

Wednesday, October 7, 2009

Tuesday, October 6, 2009

Makes me just cringe.

It happens all too often. Each time it makes me just cringe. Wondering what I'm yappin' about?? Let me tell you. I just cringe each time someone says to me, "oh isn't she the most loving little girl" or "those kids are such loving kids aren't they" I hear these comments often and each time, they make me just cringe. My response is usually the same. I respond with, "oh sure, when she wants to be loving. Pretty much like every other kid". What else would I, or could I say to those remarks?

Yes, my daughter is a loving little girl, when she wants to be. She is also one stubborn, strong willed and determined little girl. More loving than others, because of Down syndrome? I'd have to say that is a misconception. Although, many people do believe that is in fact true. I can't say for sure that kids with Down syndrome are more loving than the next kid. What I can say, about Carly is, she is not anymore loving than any other kid. However, Carly is very forgiving. Very caring. Shows compassion toward others. I like to refer to those as her qualities. Qualities that so many other kids are lacking.

Here is a story that is sure to knock your socks off. Paul and I had Carly out and about one day. We were shopping. I was in the check out line and Paul had Carly in a cart at the end of my isle. I saw an older lady stop and chat a few minutes with them. I also saw Paul's facial expression change. It went from a smile to a blank look. Paul's a proud dad. He's proud to be Carly's daddy. This really knocked the wind out of him. I just knew something awful was said. The lady headed on her way. Paul and Carly headed for the car. When I got to the car I knew the older lady said something that just didn't set well with Paul. I asked him what was going on and so he told me. The older lady had made a comment about Carly. This lady said, "oh we have one of those in our family too". She was talking about Carly having Down syndrome. Yes. This makes me just cringe. She also said, "aren't they the most loving creatures". That comment really makes me just cringe. Not to mention that it's a great big slap in the face! Seriously, do people actually refer to others as "creatures"? Apparently.

Monday, October 5, 2009

How wrong one can be?

Being this is Down syndrome awareness month, I've been thinking quite a bit about when we found out that Carly was in fact born with Down syndrome.

We found out the day Carly was born, that there was a possibility that she was born with Down syndrome. However, the doctors did not feel there were very many soft markers. A couple, but nothing that was real alarming. Still to this day, that remark from the doctors just floors me. A couple of markers? Really? Give me a break. Either she has them or she doesn't.

I remember the labor and delivery nurse asked me how old I was..this only hours after having Carly. I told her that I was 35. And that I had just turned 35 a few months prior. Of course I just knew that was it. My age did it. I was more than 35 at the time of Carly's birth. That must have done it. 35, the number that all people talk about. Over 35 and pregnant. Like it's a sin. I just knew it was all due to my age. What other reason could it be? How wrong can one be?

Within a few weeks, we had our confirmation of a Down syndrome diagnosis. We went through shock, anger, grief and all those other emotions that one goes through after a major, life altering shock takes place. All sorts of thoughts went through our minds at that point. Would she be able to sit up? Would she be able to walk? Would she learn to talk? We had no idea what to expect for our daughter.

I had seen both ends of Down syndrome. My cousin (my moms niece) was born with Down syndrome 25+ years ago. She isn't able to walk, talk or feed herself. I had also seen the other end of the spectrum regarding Down syndrome. My 2nd cousin has a son, who is now around 12, who was born with Down syndrome too. He walks, or should I say RUNS! He talks. He attends public schools. However, just because we knew that it didn't ease our doubts for our daughter. Our minds quickly leaned toward the worse possible out come for our baby. How wrong can one be?

I didn't know how I was going to take care of this baby. I only knew how to mother a typical child. One who didn't have any "special needs". I would soon find out, you parent these kids the same way you parent any other kids. We gave Carly utensils at dinner time, just as we did with our oldest two. Imagine my surprise when I found out that using spoons and forks are a huge milestone for kiddo's with Down syndrome. I never thought about it. I just went about being a mom as I did with our first two.

Carly did sit up. She did learn to walk. By 18 months she was cruising.Walking all over the place. She was feeding herself with utensils by the time she was 1 year. I doubted her. I doubted me and my ability to care for her. Teach her. Help her achieve all that she were able to.

Since having Carly, I have found out that although age may increase your chances of having a child with Down syndrome. Age is not all to blame. Teenage girls have been know to have given birth to babies with Down syndrome too. Age is a factor, but it's not the only contributing factor. As I said, I just knew my age was the reason for Carly being born with Down syndrome. How wrong can one be?

For those of you wondering about me having 2 cousins with Down syndrome. I did run that past my genetics doc. She informed me that there was no link between the 3 separate (Carly included)diagnosis of Down syndrome in our family. I don't actually buy that. You see, this is all on my mothers side of the family. My moms sister had the first child in our family with Down syndrome. My moms first cousins daughter had the second child in our family born with Down syndrome. I have the third child born into the family with Down syndrome. Coincidence? I'm not for sure. I think that there has to be a link somewhere.

For those who don't have a child with Down syndrome. You may think you can relate to us moms who do. You cant. There is no way for you to 'get it'. Not until you have walked in our shoes can you 'get it'. For those who underestimate our kids. Remember, I was underestimating Carly from the get go. All I can say is~How wrong one can be?

Sunday, October 4, 2009

Back online.

I'm back online. Finally. My computer's on the fritz. So....in the mean time while that's getting fixed, Paul bought me this.

I love it!

Saturday, October 3, 2009

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?

Friday, October 2, 2009

Swim Karen Swim.

Last year, Karen Gaffney swam 9-miles across Lake Tahoe. She did this to raise money for the National Down Syndrome Congress and to show the world that people with Down Syndrome are more alike, than they are different. A phrase I tend to use often.

Karen is such an inspiration. Click here to read what she's up to now.

Swim Karen Swim!

Thursday, October 1, 2009

Lets try this again..

Not sure what the heck happened after putting (click here) this video on my blog. Last night it was fine. This morning, it was a jumble mess. Sorry about that. You all must have thought I flipped my lid! Crazy.

Anyway, a friend of mine emailed me this video of Beyonce singing to Chelsey during a concert. Chelsey is a leukemia patient who lives in Australia. It brought tears to my eyes both times I viewed it. What a wonderful thing Beyonce did for this little girl. What a way to lift the spirits of Chelsey and her family. Kudos, Beyonce!