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

Monday, June 29, 2009

Splish Splash.



This is how we spent our Sunday. Carly's favorite place during the summer. The pool. Oh yes. You do see our puppy, Diesel. He too, loves to swim!

Thank goodness Carly is still small enough to fit into the infant/toddler swim rings. Although, this year, she is much more brave and curious about the water. Big difference from previous years.

It's a huge deal around here, when Carly kicks both her left and right feet and uses both her left and right arms. Due to a potentially fatal blood infection during treatment. (more on that when Carly's story continues) Carly's brain was damaged due to swelling. Caused by the blood infection. That infection nearly took her life. Soon after this happened, Carly was left with her left arm/hand hanging like a wet noodle. She has come along way since then. Her left hand/fingers don't always work just the way they should, but compared to a few years ago she does great now. So, you may often hear us reminding her to "use your left hand" or "kick both legs". She tends to forget. Be sure to scroll over pics to view all the stills and the video too! Be sure to click the sound button too. You can also hear her sweet voice...just for a second, but you can hear it nonetheless!

I hadn't realized how much of a wreck I was over the course of the last 6+weeks. I mean, I knew I was worried sick, but holy cow! I kind of crashed and burned on Friday night. I was exhausted. Saturday proved to be much of the same for me. My arms and legs were even tired. If that makes sense??!! By Sunday afternoon, I felt much more at ease with life. Life. Hmmmm, it sure is one heck of a roller coaster ride!

Friday, June 26, 2009

YaY!!!

NO CANCER!! I just got a call from the Oncologist. She viewed the slides herself. Of course pathology did too. What was found in the marrow was viral cells. The doctor gave me the name of the cells, but I'm so excited I cannot for the life of me remember what they are called.
Carly has to keep her appt for 4 weeks from now. Basically because we already have it set up. The doctor said we may as well keep it. Then we can get back to our 6mo schedule. I did ask what we do about the viral stuff. I was told, nothing. Let it run it's course and eventually Carly's platelet count should return to normal.
I can not even describe the relief I feel right now. This was such a hard day for me. For all of us. Paul actually met up with mom and I at the cancer center today too. I was glad he did. It's rare that he is able to go to appt's with us. So it was nice that he was there for support. I did get pretty emotional just before they started the bone marrow aspirate. I just hated having to be in this position and have Carly go through this test. However, I'm very thankful that we went ahead with this. Now we can put it to rest.
Carly did do quite well today. She got up this morning about 7:30 and begged for food a couple of times. She was NPO (nothing to eat or drink) because she was getting sedated. We side tracked her and she soon forgot she was hungry. Poor little girl finally got food at about 1pm. She's doing really well now. Except for being very grumpy. I think that has to do with the Morphine and Versid drugs that were given to her. I'm sure her hip is sore too.
On with our weekend.
NO CANCER, YAHOO!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Thanks so much for checking on us and for holding Carly close today and during these last, very rough 6 weeks.
Joany

Thursday, June 25, 2009

F R U S T R A T I O N - to say the least.

Today's appt wasn't exactly bad, but wasn't much better than the last 6 weeks. Carly's platelet count dropped again. This week they are at 58,000. 2 weeks ago, they were at 80,000. Seems as if they just bounce between those two numbers.

The decision was made today by me (mainly by me) to go ahead and do a bone marrow aspiration on Carly. I had the option of tomorrow (Friday) or wait until next week (Thursday) to see what happens. If I would have opted to wait, and her platelets were up to 80,000 they would not have done the bone marrow test. I feel that this has gone on long enough. I want solid concrete proof that there is no leukemia present in her marrow. Her blood remains blast free,(blast are cancer cells) thank God! However, we all want to make sure there is nothing looming around in her marrow. Therefore, I told the doctor, "let's just get it over with."

I asked the doctor and NP their gut feeling. They both responded with, not leukemia. However, as we all know, and as the doctor pointed out. There are no guarantees. Sadly, that is reality when it comes to cancer.

So tonight. I ask that you pray for Carly. She will be going in for a sedated bone marrow test tomorrow at 10:30am. She will not be having a spinal tap. Unless the NP feels she should. As it stands now, the doctor doesn't think a spinal is necessary. We may not have the final report tomorrow. We could and hopefully get the preliminary results.

As for me. I handled the appt fairly well. Of course I took a Xanax before the doctor even came into the room. I imagine that helped. I did break down driving home. Tried not to, because Carly gets so upset when I'm upset. But, I just couldn't help it. Sitting watching her in my rear view mirror I can't even believe we are going through this. This just breaks my heart into a million pieces. I kept my sunglasses on and wiped away my tears. She didn't catch on. We pulled into McDonald's, I contained myself best I could and we headed in to eat.

I just hate that this is happening. I hate that Carly has to endure the terrible horrible bone marrow test tomorrow. I hate that our family is going through this. I HATE the word CANCER.

That's it for now. Please remember Carly tomorrow as she goes in for her bone marrow test @10:30. I will update any news I have as soon as I have it.

Joany

Wednesday, June 24, 2009

Tomorrow.

Tomorrow, Carly and I will head to Ann Arbor to the cancer center. I can't believe that two weeks are already up. So, tonight I find myself feeling awful anxious. Although, I do think she is OK. The doc thinks she is OK. The NP thinks she is OK. Still, it's just the whole nerve wracking process. Blood work. Vitals. Waiting for counts to come back. Sitting waiting for the doctor and having your heart skip a beat as the door opens and in walks the doctor. It's the same feeling every single time. We have been doing this for almost 5 years and it just doesn't seem to be getting any easier.
I'm just praying her platelets are up to normal or at least closer to normal than 2 weeks ago.

Unfortunately Carly and I will be going alone tomorrow. Something I rarely do. I HATE going to that place without some sort of support, from someone. My mom, who normally goes with us, can not go this time. She was taken to the hospital via ambulance this afternoon. Her heart was racing upwards of 170bpm. She had extremely low blood pressure. Turns out, she is OK. No heart attack, thank God. Now though, she just feels worn out. She got home around 7 tonight and went to bed.

Other than the anxiety all day. And the excitement of my mother. It's been a pretty good day. It was terribly hot and humid out. Even Carly wanted to stay in the house. For her, that almost never happens. We were outside early for a while this morning to play. After dinner Carly and Paul and Diesel (dog) went swimming. I took a couple of pictures, but for some reason cant get them on the blog tonight. So, we'll save them for later!

Please keep Carly in your prayers tonight and tomorrow. Her appt at the lab is 10:25 and 11 to see the doctor. I'll let you know as soon as I can. You can always check twitter out on my sidebar.

Miss Carly's gone a drivin'...


When Carly takes the wheel, you have to be quick to get outta her way~dog included!
Poor Diesel (dog) just took him a while to catch on. Carly stops for nothing. Nobody. Not even the dog!

Daddy had to follow along behind her for a bit. She has the no desire to really watch where she is driving. She drives, looks all around the yard and is quick to look away at the radio to find her tunes!

This is a rare moment of concentration.

Oops...she hit the deck! She does, eventually throw the car into reverse and backs herself out of these mishaps.

We really love watching her have fun driving her car. She just has a blast! However there are times when she jumps into her car...we all dread it. On these very hot and humid days it's not much fun for us. She knows how to put the car into high gear. At that point, someone has to be running behind her to make sure she doesn't plow her car into anything. (If I'm not mistaken, high gear is 2.5 mph) Not much fun in this hot humid weather we're having right now. Although Carly thinks it's great to be flying around the yard in her little car, while crazy people run along behind her!

I already had my camera off when the funniest thing happened. Carly was just tooling around, at low speed. Paul bent over to pull a few weeds from a flower bed and WHAM....Carly plowed him over. It was so funny. Paul was so surprised. Not sure if Carly intended on plowing daddy over or not. Either way, It would have been a great picture.


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Monday, June 22, 2009

What a fun weekend..


The town where we live has a Summer Fest each year over fathers day weekend. We of course go each year. Well, almost each year. We weren't home last year and we did miss a couple due to Carly and her illnesses. Otherwise, we go. It's fun. Carly loves it! So much so, she insisted on climbing the cannon that sits in the center of town. She just had to. As every other child in town was doing the same. You know, monkey see, monkey do!

We spent time at the local park. Where Carly never wants to leave. She plays and plays for hours.

Carly and daddy bounced in bounce houses that were set up all over town. Carly LOVES to bounce. Although the big kids tend to make her nervous. They just bounce way to wildly for her liking.


So, we just have daddy jump in and bounce along with her!
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Friday, June 19, 2009

Baseball All Star - 2nd try!!

video

Let's see if this video will work. Who knows what happened last night when I posted the other one. Hopefully you can now view our Little Baseball All Star!

Baseball All Star!

video

Carly had a blast while playing "bat ball" as she calls it. We bought her a T-ball set in the spring. That was a big hit. Then, she also played T-ball in gym class. The teacher said Carly just loved it. She would hit the ball and run like the dickens to each base. Cracking up the whole time!

Sorry for the blurry video. I was trying to keep our puppy off my lap so I could film. I realized after I was done, that the darn pup licked my lens. What is it with all the licking going on??!!

Hopefully everyone can view this video clip. I had a HECK of a time posting it.
Enjoy!

Thursday, June 18, 2009

Yesterday

Yesterday Paul and I had doctor's appointments. We both have terrible backs. Our doctor, who is a D.O. and does manipulations/adjustments, tells us it's due to lugging Carly around. Every single time that we go, the doc asks us, "are you still carrying Carly around?" Um, yes...she is very stubborn and sometimes decides she would rather do her own thing and the heck with us. For example. She likes to walk while we're in the grocery store. OK, fine. We let her walk. However, she suddenly sees something of interest and splits. We don't lose her in the stores, but for the life of us, we cannot get her to continue on our way. You know, the way she was going before she split! So, yes, sometimes we do need to pick her up. I kid you not, she is the most stubborn child I have. Which in turn, leads Paul and I heading to our doctor about every two weeks for adjustments.

After leaving the doctor yesterday we decided to go our for dinner. Well, Carly of course started in. McDonald's was on her agenda. Although Paul and I had no desire to eat fast food. We headed for Cracker Barrel (CB). You might know, it's two doors down from McDonald's! Carly didn't raise too much of a ruckus though. Once we got to CB, Carly made her way to the many toys that they carry in their store. No mention of McDonald's after that!

We were seated. Placed our orders. Chatting and coloring with Carly. I then felt the presence of eyes upon us. Sure enough. I discovered an older lady just staring away at Carly. It was so obvious. Although, it didn't phase Carly in the least. It bothered me. I mean come on. We're a family out to dinner....do you really need to STARE at our daughter?!? Did this lady see something I didn't see. Is my daughter green, purple, orange...what the heck? We went on with our chatting all the while knowing this lady was still staring.

Our salads came and we were getting Carly squared away. She always takes my salad plate away from me :o( ! I do give her some of my salad each time. I put some on a small plate for her. Oh, but that's not good enough. She still takes the big plate and leaves me with the little one! Stinker. Paul, for some reason, likes to put salt on his salads. YUCK! Well, this time Carly saw him. So, she too had to go for the salt shaker. Just as I reached to take it from her, she proceeded to lick the top of the shaker. I nearly fainted when she did that. I did get a wipe out and tried my best to clean it off. Although, I was more worried about the germs she picked up from doing the licking. GROSS!

Again, I felt those eyes. Sure enough the old woman had her eyes glued to Carly. She had seen the entire licking incident. Good grief, she was rolling her eyes now. That did it for me. I looked at Paul, who couldn't see the woman from where he was sitting. I spoke quite loudly, loud enough for this old woman to hear me for sure. Here is what I said, "That old lady will not stop staring at Carly. She must think Carly's a freak. She saw her lick the salt shaker and rolled her eyes. You would think she would look away, but no......I swear, some people are just too nosey for their own good." I'm sure the lady did hear me. She finally turned away. I don't normally do things like that. Get nasty and make nasty remarks. But for crying out loud. ENOUGH already. That rolling of the eyes just pushed me over the edge. Don't get me wrong. I did scold Carly for licking the salt shaker. I explained to her that other people use it and now its dirty and yucky. I tried to explain that you get your germs on it by licking it, too, but that may have been a little too much for her to grasp.

I know all of us mom's out there with kiddos who have Down syndrome go through this almost daily. I normally just let it roll, but last night. This old lady just rubbed me wrong. I don't see the need in people staring. I guess if my kid was screaming, throwing food, not sitting still and so on..OK, that may warrant a few stares. But my kid who is sitting still, minding her own business, behaving herself, (except for licking the shaker) enjoying herself spending time out with her family...getting comments from waitstaff on how well behaved she is. Doesn't need to be stared at. She is a child for goodness sake. STOP staring already.

I'm very happy that yesterday is just that. Yesterday. On with today!

Monday, June 15, 2009

ABC's of Me!

I got this as a forward in my email. Although, I have also seen it on a couple of blogs in the last few days. Anyway, thought it was fun!

A - Age: 42, for a couple of more months!
B - Bed size: Queen. Still not big enough when we have to share it with Carly every night!
C - Chore you hate: Mopping floors. Paul does it for me. He's awesome that way.
D - Dog's name: Diesel and Penny
E - Essential start your day item: breakfast
F - Favorite color: Green, I really don't have just one though!
G - Gold or Silver: Gold
H - Height: 5'4"
I - Instruments you play: the keyboard on the computer. That counts right?
J - Job title: Mom, CFO, CEO, cook, maid...you get the picture?
K - Kid(s): 3 - Ashleigh 22, Bradley 19 and Carly 7
L - Living arrangements: House in Michigan. That is way to small for us, but it'll do until the economy picks up.
M - Mom's name: June
N - Nicknames: Mom, Mama, Jones, My brother used to call me bug, but he hasn't done that in years.
O - Overnight hospital stay: Ovarian cyst removed when I was 14. Some sort of unexplainable intestine infection when I was 17 and of course each time I had my babies.
P - Pet Peeve: Rude people..who are quite unhappy at their jobs. Like that's my fault...
Q - Quote from a movie:"Frankly my dear, I don't give a damn" Now you know my most favorite movie. Gone With the Wind.
R - Right or left handed: Right
S - Siblings: 2 older brothers.. Brian and Brook
T - Time you wake up: During the summer - whenever Miss Carly decides to wake up. If she sleeps in, so do I! Otherwise, up early for school.
U - Underwear: Um, don't know what to say, other than, yeah - I wear it!
V - Vegetable you dislike: Haven't found one yet.
W - Ways/Reasons you run late: Because Miss Carly is being her charmingly stubborn self!
X - X-rays you've had: Hmm, several, but not in recent years.
Y - Yummy food you make: Chicken with whole wheat Penne pasta tossed with tomatoes, drizzled with olive oil and some Italian spices..Yummy!
Z - Zoo animals you like: Oh gosh, I like them all. The monkeys when they are playing around are the best, but you can't always count on that while at the zoo.

So, now you know me just a tad bit better. Some day I will post a picture of me, so you can all see the mom of ABandC!

Sunday, June 14, 2009

Sisters...

I can only imagine the love between two sisters. I am a sister, to two older bothers, but I have no sisters (2 sisters in-law though!). Ashleigh and Carly are what I imagine sisterly love is all about. These two are inseparable. Despite the 15 year age difference. Ashleigh is 22 and Carly is 7. Cary is attached to Ashleigh's hip whenever Ashleigh is at home. Ashleigh lost her name to that of "sissy", per Carly! Although, it doesn't bother Ashleigh at all. She is very proud to be known as 'Sissy'!

They love to spend time together. Play together. Read together. Play games together. Practice Carly's printing. Color. Watch T.V. You name it, they do it. I dread the day when Ashleigh finally moves out. After she completes her final semester at Western MI University this winter. Carly will be lost without Ashleigh around all the time and vise versa. We pray that Ashleigh will be able to get a job after finishing school. If not, she may be around a little longer than she expects to be. Which will be fine and dandy for Miss Carly.

This picture was taken at a local zoo in our area. In this picture, they were trying to get the attention of the lions. With no luck. Carly finally gave up!

Watch for the continuation of Carly's story this week. I haven't forgotten, I've just been somewhat sidetracked.
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Wednesday, June 10, 2009

A biking we shall go.

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I'm very anxious tonight. We go to clinic tomorrow for blood work. I doubt Carly's counts will look very good. I'm sure her ear infection and meds will knock them back a bit. But, off we will go. I'm praying I will be pleasantly surprised. Please keep Carly in your prayers.

I didn't think today was going to be very nice. Thankfully, it did turn into a nice day. We played outside for what seemed like an eternity. Once Carly gets outside, it's darn near impossible to get her back in the house. She just loves it.

Ashleigh surprised us today by getting out of work early. Carly was on cloud nine. She spent some time outside with Carly so I could finally come in and fix dinner.

After eating dinner we grabbed some bikes and head off for long bike ride. Over 5 miles long!! Holy moly am I ever out of shape. I should probably be doing this several times a week. This could really pay off with my diet. As you see above, Carly had a blast. She loves to go on bike rides. Daddy was getting her all fastened up. So he could ride her. I refuse to do that. I'm scared to death I'll fall over. Even though I always rode our other two kids and never fell once! I flat out refuse to ride Carly.

Speaking of diets. I've been doing Weight Watchers (WW)for a month now. So far I've lost 10lbs. I've done WW in the past (after having Carly) and have had great success with it. Of course I blew it. Or else I wouldn't need to be on it again, right!?! To be fair. I did start to gain it back soon after Carly was diagnosed with leukemia. She was so sick and in and out of the hospital so much. All we had time for was fast food. Something that I really can not eat much of. It got to the point where Brad finally asked me, "mom, are you ever going to cook food again?". I did
eventually. By that time though my weight had already started piling back on. So, back on WW I finally go. It's not easy this time either. Not sure why. Could have something to do with the fact that I'm now over 40.Hmmmm...that could just be it!

Tuesday, June 9, 2009

Hanging out and Why

We've just been hanging out. Trying to go on with life as best we can. The anxiety is eating me alive. I can't wait to go to clinic on Thursday, but at the same time, I dread it.

I have taken some pictures of Carly the past few days, but just don't have the gumption to load them onto the computer.

Yesterday, I went to the doctor. I've been having headaches. Hmm, wonder why?? Anyway, I took Carly with me. As I normally do. I knew the doctor would want to check her over too. She had a yucky nose and a bit of a cough too. Poor kid also has a "raging ear infection" as the doc put it. She was put on zithromax. I was worried about her counts falling lower. As they tend to do when one is sick and on antibiotics. So, I called the cancer center, just to be sure it was OK that she take zithromax. They probably think I'm nuts. They said, "oh, of course she can take that". Just call me Nervous Nelly.

Anyway, I'm a slacker this week. Just hoping things go well on Thursday. I need some peace of mind for crying out loud!

By the way. Does anyone...or should I say, did anyone follow the Little April Rose blog? I'm appalled that anyone would pull such a scam. Makes me sick. I was one who was praying and sitting on the edge of my seat just waiting for updates on this tiny baby. Wow, what lengths some people will go to just to make a buck. Why? It's just really sad.

This has really just rubbed me the wrong way. Maybe because I have been the parent sitting and waiting. Waiting and praying for my child to live. To fight her way through. For God to pull her through. Praying for a miracle. We have walked that walk with Carly 4 separate times. I know the pain and heartache. How dare anyone try to con people over a child's life or loss of life.
Again. Why? It's just plain sad.

OK, done venting.

Sunday, June 7, 2009

Sorry...

I'm sorry. I did intend on picking up on Carly's story this weekend. I just don't have it in me right now. I'm scared, frustrated, angry and sad. I don't understand what is going on with Carly and her blood work. I know the doctors say it's not leukemia. My question then. What the heck is it???

Our NP did mention that there is a "condition" as she put it, called ITP. Basically this condition can be had by anyone. Not just people with Down syndrome, not necessarily people who have come off treatment. I didn't ask how they would conclude this type of diagnosis. Didn't want to know just yet.
Also, we were told that the clinic has a few kiddos who, for some reason after treatment did this very same thing with their platelets. Whatever the case. I'm tired of all of it. I want my daughter to be healthy. I want her to enjoy every single day. I too, want to enjoy every day. This is causing me much grief and worry. The other thought with Carly and her platelets is that she just hasn't fully recovered from her viral bug. Too many thoughts and no concrete answers is just driving me crazy!

I pray often that her platelets will recover. However, she now is battling some sort of sinus thing. At first I thought is was allergy related, but now I'm just not sure. I have to go to the doctor tomorrow and plan on taking Carly with me. I know when the doc takes one look at her nose, he is going to want to put her on an antibiotic. Which will in turn, cause her blood work to be slightly off, again!

Anyway, I PROMISE, I will post the continuation of Carly's story. As soon as I get my head straightened out.

Friday, June 5, 2009

Last day of school. Part 2



Isn't Carly a cutie pie??!!
Elena, Carly and Shanna. They are
very good friends. Elena is 5 and
Carly and Shanna are both 7. In fact
C and S are only 2 weeks apart in age.



Elena, Carly and Carson.
Carly is very shy around Carson.
The teacher says "Carson just loves
Carly" ;)




Giving me a heart attack! Carly loves to
mimic the other kids with everything they
do. Including grabbing the bar above the slide
and swinging her legs out to take a flying leap onto the
slide! This is fun and fine and dandy for the other kiddos, but
Carly doesn't have great strength in her left arm/hand (more about that later)
And, her balance is not so good either. My hair was getting grayer by the
minute watching her. Bless her heart though, she really tries her best to
keep up with the other kids.

On another note. We are heading to Ann Arbor in a bit. Carly is due for
more blood work. Please say a prayer that everything is still looking good.
I have been full of anxiety for the past 3 days. I'm just sure she is OK, but
I really need to see that lab sheet to ease my mind. This is suppose to
be our last weekly blood draw. We are then suppose to get back on our
regular 6 months schedule. So, please hold Carly close in prayer today.
I will post the results later today.
Thanks so much!
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Thursday, June 4, 2009

Last day of school.



Last day of kindergarten!
L-R order Elena, Carly and Shanna


A big drum roll please!!
*
*
*

Miss Carly received her Diploma.
Yay!
This is a day I wasn't sure we would ever be
able to experience.

We are so proud.

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Wednesday, June 3, 2009

Change of plans..

Oh I do hope this change will be much better for Carly. Some of you read our care page and may know that Carly will be attending summer school this year. We now have a change in plans as of this morning.

A couple months ago, I checked with our school district, just to see if there were any programs in our area, that Carly would qualify for. To extend her school year. My fear was, that she would regress during the summer. I was told that the only thing offered was a school for children with special needs. This school had severely disabled children. Much more so than Carly. However, that was our only option.

I had many concerns about sending Carly to this school. One was, I remember back to preschool. Carly's teacher was a special education major and told me that Carly did not need to and should not attend this particular school. That had me concerned. The other thing was the severity of the other children. I went to tour the school and saw several who I know would have really frightened Carly. However, I had resigned myself to the fact that this would be a good thing because they had the professionals there to work with Carly. Such as speech, OT and PT.

This morning my phone rang. It was the special ed director of our school district. She informed me that there was a change and she thought it was better suited for Carly. Our school has contracted with a pre-school/daycare in our home town. They will be bringing the kids that need the extended school year into the pre-school and actually do a summer school program. The school believes that Carly, and the other kids who need extended school year, should be around typical kids more so than severely disabled kids.

I do have one big concern with the change. There will be no one other than OT there to give any therapy. Oh, that's not true. There will be a para pro there to give Carly her speech therapy. I'm not to thrilled with that. The whole reason Carly even qualified for an extend school year is because of her speech. Am I wrong to want an actual speech therapist working with her?? Oh the challenges of having a child with special needs.

Our special ed director does think this will be better for Carly. They always point out to us just how "high functioning" Carly is. Also, "it's mainly her speech that labels her disable"! I really don't like the high functioning remarks. Not sure why, but it just bugs me. Hopefully, this summer school set up will be a better situation. Time will tell.

Oh, and my baby has her last day of kindergarten tomorrow....*sniff*

Monday, June 1, 2009

Carly's story. Part 5

After we returned home from vacation I took Carly to the doctor. It was around August 12 or so. The diagnosis was a double ear infection and a cold. We came home with a 10 day course of antibiotics. Carly did improve and we even potty trained her.

Carly was back in the groove of things until the end of August. She started to get sick again. She was very whinny - so not like her. She didn't really care to eat. Again, not like her. Back to the doctor we went. I was told there was a virus going around and she likely picked it up.

Football season was starting and Brad played football. In between the second doctor visit and the running to pick up Brad after practices. I realized that Carly had this weird rash on her legs. It looked like someone took a red ink pen and dotted all over her legs. After a few days, the red dots, well not all of them, but some would turn blue/purple. Being Carly had just had heart surgery in mid June. I just knew this all was related. I even called cardiology on Labor Day. They told me to bring her in if it would make me feel better, but that this virus that was going around included this type of rash. Ok. . . now what?! So, we waited. Carly got sick, again. Back to our doctor we went. He still believed this was viral. He too said this rash was going along with the virus. He then decided to place Carly on a dose of steroids. We did that.

In the mean time. I was still running to get Brad after practice. I ran into another players mother. She too had a son who had heart issues. He has had 7 open heart surgeries. Anyway, I had her look at Carly's legs. I asked her if she had ever seen anything like that with her son. The answer from her was,"no".

So, what did I do?? Well, I turned to the internet. I found things like yellow spotted fever..crazy things. I found so many crazy things. Lots of crazy things. One thing I did not find was petechia. How I didn't, I will never know.

By now, it's mid September. Carly was still not feeling well. Still had the rash. However, it had improved with the steroids. We were winging it. The doctor was sure it was a lingering virus.

Along came September 25, 2004. The day Ashleigh had been looking forward to for quite some time. This was the day of her Senior pictures. We were excited, but I was worried about Carly. We had my mom come stay with Carly so I could take Ashleigh. I knew Paul wouldn't be able to tend to Carly's needs. By now, Carly was sick. She was throwing up and crying that morning. She flat out refused to stand and or walk. Would not do it. I gave her some Tylenol and off I went with Ashleigh.

I had to make a mad dash to Wal-Mart. I needed more Tylenol. While we were there, Paul called me on my cell. He said "Your mom wants you to get home. She thinks we need to take Carly to the ER." Needless to say, Ashleigh and I headed home.

As I walked into our house. My mom met me at the door. She said Carly had been screaming in pain much of the time we were gone. By now, Carly was very pale. No color in her lips at all. Paul and I loaded her up and off we went to Ann Arbor.

As we entered the ER. A nurse just happened to be standing at the reception desk. This nurse looked at Carly and then asked me, "is this her normal color?" I snapped back, "NO, she is sick." We were taken back to a room almost immediately. This nurse new something really bad was wrong.

To be continued...