Monday, November 30, 2009
The run down of our weekend went something like this: We ate too much. Did some laundry. Watched too much TV. Went shopping on Black Friday. Did TONS of Ashleigh's laundry. Did some online shopping. Did some more of Ashleigh's laundry. Made a couple of batches of Christmas cookies. They weren't the homemade kind though. Paul saw the Pillsbury Sugar Cookies at the store. The one's that have imprints of a Christmas tree and a reindeer and he just knew Carly would love them! She did. But, daddy loved them more! Long weekends are great. But man they really throw me off.
On Saturday, I made a turkey. Paul's boss gave his guys each a turkey the day before Thanksgiving. He purchased them from a turkey farm. So it was a fresh turkey, not frozen. I decided to just to go ahead and make it. That way, Ashleigh would have plenty of left overs to take back to school with her. I must say, that turkey was delicious. The stuffing was yummy. The gravy so tasty. We even had cranberry/orange relish...Mmm! The only real difference in our turkey dinner, and the one we had at my mom and dad's, was in terms of potatoes. My kids requested that I make Hash brown Casserole.
Carly is home from school today. Actually, she was home on Wednesday of last week too. I had gotten a note from her teacher, last Monday, that Carly had been pulling her right ear quite a bit. She also told the teacher it hurt. Although, she didn't seem to be bothered too much by it on Monday night. I sent her to school Tuesday and already had planned on taking her to the doctor Wednesday. By Wednesday Carly had developed a nasty sounding cough with runny nose...Sure enough, she had an ear infection and junky sounding lungs. The doc put her on Omnicef for 10 days. She is doing much better. Still has a nasty sounding deep cough, but the coughing isn't coming as often. I expect she'll be back to school tomorrow.
Now that things are beginning to settle down a bit with the school. I can get back to my menu planning. It really is so much easier to have a menu in place. I've missed it. Although, through the next month, I will only be doing it weekly. Too much going on to plan out that far ahead.
This weeks menu:
Monday Chili and corn muffins
Tuesday Pork chops, wild rice & candied carrots
Wednesday Hot turkey sandwiches
Thursday Potato soup, rolls & salad
Saturday Baked beans with franks (hot dogs), fried potatoes & veggies
Sunday Crock pot chicken, oven roasted potatoes & veggies
I leave you with this recipe of my roasted potatoes. Keep in mind. This is my version of roasted potatoes. Meaning it's totally made up, by me. Oh, but it's so good!
Get out your 9X13 baking dish. Spray with Pam, or whatever cooking spray you use. (you can, and I do quite often, use EVOO to 'grease' the baking dish. In stead of cooking spray).Wash several (like I said, I made this up) red baby potatoes. Leaving skins on. Sometimes, I chunk these up. Other times, I leave them be. Dump some EVOO (Extra Virgin Olive Oil) into a large plastic Ziploc storage bag. I sprinkle in quite a bit of Sea Salt, (We love the taste of the Sea Salt and EVOO combo) Pepper and Italian seasoning. (I use McCormick) Seal the plastic bag. Shake up contents. Pour into baking dish Sprinkle a bit more Sea Salt, Pepper and Italian seasoning. Place in oven at 325 bake until potatoes are tender. You will need to drizzle a tad bit more EVOO on the potatoes during the baking process. I usually do it a couple of times. Being these are baby potatoes, it doesn't take long for them to bake. These are delicious. I came up with this due to the abundance of these yummy little red potatoes from our garden.
Have a great Monday!
Wednesday, November 25, 2009
We've been singing this song with Carly all week. A song she learned at school during music class. Well, maybe I should say that I do the singing. Carly watches with wonder as she signs much of the song.
Five Little Turkeys
5 little turkeys standing by door,
One waddled off, and then there were 4.
4 little turkeys under a tree,
One waddled off , and then there were 3.
3 little turkeys with nothing to do,
One waddled off, and then there were 2.
2 little turkeys in the noon day sun,
One waddled off, and then there was 1.
One little turkey better run away,
For soon will come Thanksgiving day.
This song brings back many memories. Ashleigh and Brad sang it when they were in elementary school too. As a matter of fact, the music teacher they had, is the very same one that Carly has today.
I'm already hungry for dinner tomorrow. Here's our menu:
Nice big fat turkey.
Brownies (Brad dislikes pie)
Mmmmm..... I can't wait!
Tuesday, November 24, 2009
Frank A. Clark
Sure, I reflect back often. You've read much of that reflection on this blog. Each anniversary of each of Carly's health crisis' are forever etched into my brain. But this time of year. I look back and realize just how lucky our family is. I am thankful. Thankful to have this little girl our lives.
As we sit down to Thanksgiving dinner on Thursday, I will do as I have done the past 7+ years. Look at this little gift that God gave to our family. Watch her gobble up her turkey with all the fixin's. For that, I am so thankful.
Monday, November 23, 2009
1. You never have to worry about worrying over nothing.
Let other parents obsess over the frivolous and the shallow. Your child will make sure you always have something worthy to worry about.
2. Developmental delays = more years of hugs, kisses, and little-kid sweetness. What mom of a sullen teen doesn't secretly wish for the same?
3. Maybe someday, Ty Pennington will come build you a house.
Hey, Extreme Makeover: Home Edition loves families of children with special needs. Your little one may be your ticket to a lavish living space.
4. Any little milestone is a cause to throw a party. Your child works hard for every step, sit-up and syllable, giving you lots to be excited about.
5. Every day is a learning experience. Some days it's a pop quiz, some days it's a crash course, but life with your child is always an education, for sure.
6. You have the privilege of putting several doctors' children through college. After paying for all those appointments, you may feel like a one-family scholarship foundation. Put your child's name on some letterhead and take pride.
7. You meet a better class of parent in waiting rooms and support groups. Your child frees you from having to hang out with those snotty parents on the playground, and gives you entry into an exclusive club of people who are sensitive, sarcastic, and sure of their priorities.
8. You have an iron-clad escape excuse for any occasion. You'd love to stay at that boring party, crowded event, endless church service, but, you know, your child just can't tolerate it. (And if sometimes it's you who can't tolerate it -- who's to know?)
9. Coming up with new strategies every day keeps your brain sharp. They say doing crossword puzzles helps ward off Alzheimer's. Figuring out your child's schedules and treatments and lessons and rights and restrictions must easily provide twice the protection.
10. Your blessings will always be fully counted. Other parents may take the gifts that their children bring for granted. Not you. Not ever.
Sunday, November 22, 2009
Paul did some errands on Saturday morning. When he returned home, he had brought with him, these beautiful flowers. Paul and I don't really do the flower thing. Neither of us have ever felt that spending money on flowers for each Hallmark Holiday, made much sense. However, I must admit, that once in a blue moon, it's a nice surprise.
Aren't these the brightest most vibrant colors?
When I asked Paul what the reason was for the flowers. He said, "you've had a rough couple of weeks with the school and I thought flowers would perk you up". He was right. A big bouquet of fall colored flowers was just what the doctor ordered!
Saturday, November 21, 2009
palsy. Her supervisor told her, "Ashleigh you could be running the joint before too long". Both of these young people are the same age as Ashleigh (soon to turn 23). Ashleigh will be doing home services for both. She will start her job soon after the first of the year.
Last week Ashleigh told me that she thinks she wants to continue on for a nursing degree. That was her original career choice, but Western and their waiting list was just to far off. She could have gotten into the nursing program next term or as her advisor said for sure the following term. She opted out. Not wanting to hang around a couple of more terms. Spending more $ on college. Now, she is thinking that's just what she may want to do after all. We shall see. However, she will not be attending WMU for this. She is thinking of UofM or MSU. They both have accelerated nursing programs. The only prereq is, a 4 year degree. Time will tell.
I opened up the mail yesterday. This is what I found:
have to come with her. She wants us near when she starts a family. She doesn't even have a significant other. Yet! Plus, she doesn't really want to leave Carly. That's probably the whole reason she would want old ma and pa around!
The month of December will be a busy one for Miss Ashleigh. Her birthday is December 13. Graduation is December 19. Christmas of course on the 25th. I just realized. This December is going to be quite costly for old ma and pa!!! ;o)
Friday, November 20, 2009
Sorry it's so grainy. I scanned it into my picture file and of course it didn't turn out as bright & crisp as the original. But you get the just of it. :o)
As I was telling Paul tonight about the three month follow up for blood work (or whatever). Carly quickly pulled her shirt sleeve up to show Paul where her Wednesday labs were drawn from. She then went on to tell us that next time she wants the other arm done. After that, she let us know that she wants McDonald's after her lab work. Guess she needs something to look forward to. Silly girl.
Happy Friday all!
Thursday, November 19, 2009
Lab results are:
white count 3.3
August was our last blood draw. The lab results were:
white count 3.8
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.
Tuesday, November 17, 2009
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!
Saturday, November 14, 2009
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!
Wednesday, November 11, 2009
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!
Friday, November 6, 2009
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.
Imagine her surprise when she walked in to his office yesterday and he told her, "no need for the ultra sound, you're A-okay"! She was shocked and very happy. This specialist did another work up on her 2 weeks ago. All her levels that were very concerning (blood levels) are all NORMAL now!!! He is not concerned at all. Says she may have had a UTI going on and that may have thrown everything off. Safe to say, my 71 year old mother was doing the happy dance!
This picture is nearly 2 years old. It was taken Christmas of 2007! Sadly, my mom and I are usually snapping the pictures, so we have very few of ourselves! Which tells me, I need to snap more pictures of my parents. My mom in particular!
Thanks for your prayers. Mom's words last night were, "prayers work"!
Thursday, November 5, 2009
Wednesday, November 4, 2009
It just doesn't seem possible. I can not believe that twenty years ago today, I was holding our brand new baby boy in my arms. This was our very first 'family photo'. Family of 4! Not sure, but I'm willing to bet that Ashleigh (who never, ever stopped talking, still hasn't) made a comment about her new baby brother..that's likely why Paul and I are looking at her. Being this took place 20 years ago, I just can't remember what exactly was taking place during this snapshot!
Brad was our largest baby. He weighed in whopping 8lb 8.8oz and was 22" long. Poor baby had to be delivered via the vacuum extractor. Yes. It was as scary as it sounds. It's a suction device that is placed on the baby's head. Mom pushes, the extractor suctions the baby out.
Within 24 hours we learned, due to the vacuum extractor, our baby had a very badly broken collar bone. Poor little guy. He was in sooo much pain. I know many doctors claim newborns don't' feel pain. I beg to differ. And personally, those doctors have no business being doctors! But, that's just my opinion. Anyway, this little guy felt the pain. It was gut wrenching. Funny as this sounds, I was very thankful it was his collar bone that was broken. I read an article in Parents Magazine very shortly after his birth. The article was all about the dangers involved with using vacuum extractors. My heart sank as I began to read the article. I learned that many babies were dying due to broken necks after this type of delivery. So yes, I was thankful our baby had a broken collar bone.
Looking at our new baby, we couldn't imagine how he would be as he grew up. We wondered about his personality. Who he would look like. Who he would act like, behavior wise...of course, on bad days, he's his dad's son 100%. LOL! His looks, well those come from his dad too. Matter of fact, all of our kids look like their dad. :o)
Here we are 20 years later. Brad has grown into a nice young man. He has had his share of hard times in these 20 years. Hard times that a person of 20 years should not have ever had to endure. At least not so much, so soon, in such a short span. But, I believe that is called, life. Sometimes life goes along just hunky dory. Other times, not so much.
Brad still suffers with depression. Still is having a hard time finding his way in life. Certainly not what we had envisioned 20 years ago, for our new baby boy. All that being said. Brad has never given us any grief. He was a decent student all through school. Could have been much better (seriously, what mom doesn't say that?) if he had actually opened up a book to study, but he pulled off C's and passed each grade and graduated. High school is now behind him. His future is uncertain. That breaks my heart. He appears to be somewhat lost. Unsure which direction he needs to go. He lacks confidence in himself. Something that took place when he was hit with a severe case of Mono his senior year of high school. That was his breaking point. That's when depression took over his life. Some days, Brad does super. Other days, are awful.
Today, it's your 20th Birthday. Happy Birthday to you! May this year be the start of a whole new beginning.
Monday, November 2, 2009
As for the legal part of it. I did have an attorney present at the meeting. I do feel this will likely go into a hearing. All because the stupid school will not meet Carly's needs.
I do have several other issues with the school that a judge would really frown upon. However, I don't want to get into too much of it right now. Lets just say, this school has stepped WAY over the line on many issues regarding Carly.
We could use a few prayers in the up and coming weeks. Prayers that all goes smoothly and we can avoid any court proceedings. But, like I said, I do feel we are headed to a hearing.
Carly is still home from school. We pulled her out due to the confirmation of Swine flu at her school. She did get the shot on the 24th. However, it takes 14 days to start to do it's job. Hopefully, she will be back to school on the 10th.
Update on Sarah, my aunt's niece. Her whole ordeal started on Oct 15. She is still in ICU. Still on the ventilator. She ran a temp of 104.8 (under arm temp) for one solid week. It is down now to 102.6. Sarah is still very critical. It doesn't look good for her. Please keep Sarah and her family in your prayers. She just turned 30, while in ICU.
Family issues, other than Carly. My mom is having some health issues. It looks as if she is in kidney failure. To what extent? We don't yet know. For what reason? We don't yet know. She has an appt with a specialist and will be having an ultra sound to determine just how much failure she has. Also, to see if it's one or both kidneys. Last week she met with the same specialist and went over some test results that were done previously. He did confirm all of the tests point to kidney failure.
My nerves are frazzled right now. Let's see, I have the school issues going on. I have my mother's health issues to worry about. Oh, and Carly has up and coming Cardiology and Oncology appt's on Nov 12. She will be having an Echo and the whole work up. I hate those
Echo's. They scare the crap out of me. I'm always such a wreck and just know they are going to tell me bad news. Then of course, there's Oncology. 'Nuff said!
Guess that's about it, plus my battery on my laptop is dying.
Sunday, November 1, 2009
However, Halloween did come and go and we did par take! Carly carved her pumpkins. Well, Paul carved them. Carly 'gutted' them. ;) Carly wore her Halloween day attire and then dressed up as the sweetest 'lil black kitty cat ever! We took her out Trick-or-Treating around our town last night. Which she did enjoy. Especially when she spotted an entire family dressed up as, The Wizard of Oz! The dad was the Tin Man (very cool), mom was the Scarecrow, little daughter was Dorothy and toddler son was the Lion! Way too cute. Wish I'd a thought to snap a picture of them. Carly kept saying, "Oz, more Oz"! We all know that movie by heart around this house! Carly has watched it, no less than a million times! It's one of her all time favorites, for sure.
Hope you all had a very Happy Halloween. I will be back, or maybe I should say, I will try to be back to blogging in the coming week. I have lots going on with the school and plan to fill you all in.