Lab work results.

My mom and I took Carly for her lab work yesterday afternoon. We went to a local lab. Thankfully there were no other people in the lab. Just mom, Carly, myself and 2 lab techs. Whew! I was nervous going into the lab. Fearing that everyone has the Swine flu! Even though Carly was vaccinated. I'm still leery.

Lab results are:

white count 3.3

hemoglobin 13.3

platelets 85,000

ANC 1.7

August was our last blood draw. The lab results were:

white count 3.8

hemoglobin 13.8

platelets 75,000

ANC ?? like 1.2 (cant remember)

I'm okay with these results. Of course I would much rather Carly have normal platelets, but she does not. I have to learn to live with that. The last time Carly had normal platelets was last February. Truthfully, it sucks. It's one more thing for me to worry about with her. Lord knows, I could use a break from the worrying department!

The big thing that worries me is of course, bleeding issues. It scares the crap out of me. Even though her doctors have all told me, countless times that Carly is okay. She has enough platelets to cover bleeding issues. They tell me that she could even have many major surgeries with the range that her platelets seems to be staying in. Still, I worry. I watch every bruise that Carly gets. I even ask her where she got them. She usually tells me "playground" and "climbing"! I watch them closely. They all heal up just fine.

One other thing that's a pain with low platelets. Carly can have nothing for pain/fever other than Tylenol. I'm not knocking Tylenol. It's a great drug. The problem is, it doesn't work worth beans for Miss Carly. Motrin works like a charm. All us cancer moms know. No Motrin with low platelets. Reason being, Motrin eats up the platelets. Soooo, lets just hope and pray little Miss Carly has very little need for any pain/fever reducers this winter.

For now. We sit tight. Carly will likely be getting labs drawn again in a few months. November was suppose to kick off our one year between appointments with oncology. So much for that happening. I know the doc will want to see her before a year. I also know, she will be getting several blood draws to continue monitoring her platelets. Maybe someday her platelets will go back to normal and we can get to those one year appt's. Those appt's are something that every cancer family waits so long for.

For now. I'm sitting here waiting to hear from the Oncologist. The nurse called earlier with the results, but she had not yet talked with the Doc as to what the game plan is.

No success. Pushing forward.

Trying to wake up this chilly Tuesday morning. I must admit, it's not easy to wake up after not sleeping well the night before. I've seem to have lost some much needed sleep due to worries regarding Carly attending our local school district. Quite honestly. I'm tired of the whole thing. Sadly, Carly is only in the first grade so this is likely to continue for quite sometime. It just plain sucks!

Monday, mom and I, along with an advocate headed in to the school for the continuation of Carly's IEP meeting. It lasted 2 1/2 extremely long hours. Some issues were resolved. Others were not. The main issue being Carly's signing. We had no success with that issue. The school flat out refused to get an ASL certified Para Pro. In fact, when they were asked, point blank whether or not they would hire someone for Carly, they answered flat out, "no"! Our next step is to present a request in writing for the signing Para, to the school district. Then, we head to the lawyer and plan to go into Due Process. Did I mention how much this sucks?

We have been in contact with the Dept of Education in Washington DC. We were told that the school district must provide this special type of Para Pro (signing) for Carly in order for Carly to receive an appropriate education. Which in turn, falls into F.A.P.E. Why on earth the school is refusing is beyond me. Heading into Due Process with cost the school some big bucks. They will indeed have their lawyers there. Lawyers that are extremely costly to the school district. Money that could be spent on my daughter's education. However, our attempts to work with the school and convince them that Carly does in fact need someone to help her to strive and be successful at school, has failed.

Many things were addressed during the meeting. One of which; I questioned why is Carly being put in time outs. Why I hadn't been informed of this (my mom busted them in action). Why they were now requesting that we give them several days notice and not to just pop in to check on Carly during school hours. The teacher turned her chair toward me and said, "how do you suggest we handle Carly?" Um...WHAT????? Everyone had just said that Carly was laid back and easy going, non disruptive, no problems with behavior whatsoever. After I pointed out the fact that the teacher was placing Carly in time outs, (which take place out of the classroom, down a hallway and on a bench), with no reason other than no one wanting to take a little extra time to help Carly along. The tune was quickly changed. The teacher then said, "well we do that so Carly can refocus". And she said, "we do that with all the kids from time to time". Her examples of time outs for other kids did not involve a bench at the end of a hallway. Those kids get to run errands for the teacher. They get to go down to the office and help make copies for the class. That's how they get punished for not being focused. How is that fair to my daughter? It's not!

During yesterdays meeting, my heart was broken by a particular comment that Carly's first grade teacher said to me/us. First, let me explain a little bit about the IEP. An IEP is a meeting with the 'team' who work with your child at school. It's a plan of goals that are set up for your kid. A plan that the school must, by law, follow. During IEP's, the 'team', which is made up of any one person who works with your child toward their education. Such as; physical therapist, occupational therapist, speech & language, spec., ed director, principal, aid, teacher and resource teacher, etc... At each meeting, each person talks of the child. Telling how the child is doing, as far as reaching goals that are set in place during each IEP. When it came time for the teacher to start her spiel. She started out by saying that she had parents come to her regarding their children and the interaction taking place with Carly. Imagine how my heart broke at that point. She also said that the parents feel their kids are having a burden placed upon them, by helping to assist Carly with various things. Such as; working with her as a buddy. The teacher went on and on and then she wrapped it up and it went something like this: "Well, I think Carly needs to be in a smaller group setting." She rambled on a bit more, but she completely lost everyone. Everyone, except for me. I knew exactly where she was heading. She went on to say, "Carly would really benefit more with one on one time and I just don't have the time to give her one on one attention." This remark really was a slap in the face. She then said, "I do have 17 other children in my class." The spec. ed director still wasn't sure what the heck the teacher was talking about and she then questioned her. The teacher went on to say that she thought Carly should be in the resource room for a good part of the day. Well....much to my surprise, the Spec Ed Dir., spoke up on Carly's behalf and said, "no, that is not what Carly needs. Not at this time ". After that, the teacher walked out of the meeting. Unfreaking-believable, don't you think?

And so, I came home an absolute wreck. 1, because they refuse to get my daughter the help she needs in order to be successful. 2, the teacher telling me the thoughts of the other parents. 3, the teacher stating that she doesn't want Carly in her classroom. Wow..talk about being slapped in the face. No wonder I didn't get any sleep last night.

For the life of me, I don't get this whole denying Carly a signing Para pro. Good Lord. This little girl signs ALL THE TIME! She has a list of signs that is way over 500. Which by the way, she has taught herself over a course of the last 2 years. Her spoken words are around 70+. Can they not see the best way for Carly to thrive in school? Obviously, they can not. Therefore, we are pushing forward.

I think I'll go take a much needed nap. Have a good day!

Mama's little helper.

On Friday, Carly helped me clean. She LOVES to help clean. I give her a Pledge Wipe and she's off to dusting. One of her favorite things to do. Well, to my surprise, she continued on with the dusting early this Saturday morning! She moved from end table to end table.

Toy to toy. Doll bed to doll stroller. She was on a roll!

Bedhead and all. Carly was on a cleaning spree this morning.

She is, without a doubt, Mama's little helper!

Wordless Wednesday...'er not!

Okay, so it's not such a Wordless Wednesday. Can you guess what kind of week I'm having??????? You don't need to think too hard. It's pretty self explanatory!

&

Ahhhh, such a great combination. Coke and chocolate. Dove, it is my new favorite!

Yep, it's that time of the month.........again! I get more sick of it each and every month. Not to mention, another week of H3ll concerning the school and Carly. There's no doubt about it, I've got my work cut out for me. We head back for part 2 of our IEP mtg., on Nov 16. Ugh! That's about all I can say..Ugh!

Carly is finally back to school. I sent her on Monday. She should be fairly well covered for the Swine flu. Plus, the Swine flu has slowed way down at her school. Of course, I'll pull her out again if and when it kicks back up. The swine flu that is!

We take Carly to have her second H1N1 shot sometime after Nov 24. That's going to be here before we know it. I'm so glad we kept her home for the last couple of weeks. I found out that her class, which has 18 kids, was down to 8 kids for 2 straight weeks. Not to mention many teachers and students from other grades were out sick as well. Some still are.

We were suppose to be heading to Ann Arbor tomorrow, but we canceled. I will not knowingly take her into a hospital that is full to the brim with the Swine flu. No way, no how. Both cardio and oncology were in agreement with this. Oncology was satisfied that her pediatrician just did a physical exam on Carly in mid October. However, we do need to have labs drawn within a few days. We could use a few prayers for good labs. I'm fairly comfortable that we will have decent results. Cardiology says we can go in 6 months, or bring her in whenever I'm comfortable. I'm sure I'll take her before 6 months!

Ashleigh was home over the weekend. Carly was THRILLED! As she always is whenever "sissy" is around. Last Thursday night, while Carly was lying in bed, we had a little conversation. It went like this:

me: Carly, sissy is coming home tomorrow night.

C: Yeeeeaaaahhh! (used her words)

me: What are you and sissy going to do?

C: taps her chin and says, hmmmm. Then continues with all this: books, (used her words). (She signed all of the following without skipping a beat), ~ eat cake, cookies, drink juice. Play blocks, puzzles, games, color, write. Play outside, swing, slide, climb.

She responded with continuous signing. She didn't pause to think about it. She just let it flow. Now..can anyone tell me, does my daughter communicate??? I believe she does. Yes, she does use some words, and her words are quite clear, but she mainly signs. Signing is her thing. Matter of fact, I've been putting a list of her signs together for the stupid school. So far I'm up to 457 all learned in the last 2 years. And I'm still working on list! Can anyone explain to me, why in the world the school does not see this?????? They are denying Carly her native language. Signing. That's the way I look at.

Yes, she kept Ashleigh quite busy over the weekend!

Nothing much else going on around here. Just the normal. Researching laws and regulations that the schools are suppose to follow regarding special needs kids. Gathering tons of information. Chatting with advocates and attorneys. Preparing for the upcoming IEP.

So much for the whole Wordless Wednesday theme!!

Have a great week everyone. I'll try to get back into the swing of things. I promise!

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.