Ramblings

Okay, so life has gotten kind of crazy. We are moving our shop to Westnedge. It has been a long troublesome project. Tonight I am about to go completely off on Jason over the whole thing. I can't even put into words what the issue is.

I have changed building plans again. I have wanted an earth bermed home, but couldn't figure out a way to give it the look we want. But this week I had an inspired moment and I think I have it planned out. With some open rafters, I think our look can be accomplished. When I get plan down, I will post it. We can all keep count of how many versions of home I can come up with in the next year or so before I can start it :)

I have found my new creative outlet!

I want to build a house! Yes, hands on, build a house! I think I have worked up a small plan that will work for my family. 24x24! Yes, that is the size of my garage.

Love Diabetes: Tsk, tsk JDRF. Are you acting responsibly?

I love Allie! What am I going to do to help the Faustman cause? I am going to send my Christmas letter this year with a request for donations to Faustman's research. The last letter writing campaign was very successful. I hope to see the same or better success this time.

The Life of a Trailblazer

This week we, well Westin, is trying Apidra, the newest fast acting insulin on the market. We are the first in our endo's office (as usual lately-we were the first on a continuous glucose monitor too) to try the newer insulin. Mind you, it has been on the market for a few years but is yet to be approved for children. But in the type 1 world, children are regularly written off label as it could take years to be approved for kids. Our endo wasn't encouraging but he did give in to my pleads. He is good that way :) That is the same thing that happened with getting Westin on a pump at 4 years old. I didn't have to plead too much with the cgms. The apidra I asked for via email and got a no. But I took up my plea again with him in person and he relented.

I have been watching a few families on Children with Diabetes that are using apidra. I really wanted to see how it would work with Westin. It is suppose to start a little faster and peak really fast. To compare, we used Novalog before and it would peak in 2 hours and last 4 or so hours. I never figured out exactly how long it would continue to tail. (That means it has this little tail that continues to lower sugar for some time.) Apidra is supposed to peak in an hour and last 2 hours. I know from last nights correction that it is lasting 4 hours but no real tail. The fast peak is what I really enjoy. I can see corrections working faster!

So far we have made minor basal changes but nothing major. I have a lot of basal testing to do before I know that other changes aren't needed. I am ready to stock up on plenty of carb free foods to get that testing done. I really can't do any other changes until I know the basals are set.

Oh, a little off topic, but I found this interesting interview with Denise Faustman. I think it does a great job at explaining her research. Check it out! http://www.diabetesdaily.com/edelman/2008/09/01/diabetes-cure-trial.pdf

Caught Off Guard by Emotion

Yesterday, September 11th, with the 7th year of the World Trade Center, I found myself remembering, "where were you that day?" kind of thoughts. I remember that day so clearly. Sure I remember the stuff on tv. But what really stands out in my mind is that was the day my mom returned to work after being off for a while for chemo. She was NED (no evidence of disease) and had returned to work that day for the City of Kalamazoo. Being a government building they were on lock down. I remember calling her that day to see what was happening in her building. That day will always be linked to that phone call. Just a few months later she started having some problems with her back and that is when we found out that her cancer had spread.

This morning I am sitting in the basement, watching Wieland play. He came across a box of some things I had packed away. One box that he hadn't actually been into yet. He pulled out my Raggedy Ann and Andy dolls my mom had made for me for Christmas one year. I wish I could remember what year. I know I was a teen. I had said I wanted some and she surprised me by making them for Christmas. She wasn't able to get the clothes done in time so I opened naked dolls on Christmas morning. I was really surprised.

As Wieland looked them over, of course he had to see if they had "butts" and I said, "Let's look. I think Mom put something on their butt." Nope, nothing. I guess I remembered wrong. A little later Wieland was pulling up their clothes and found a heart with the words, "I Love You" on their chest, right over their hearts. I said, "I don't think Grandma thought about the fact that one day her grandson would be playing with this doll. She loves you too." Tears started to flow from my eyes. I explained she was probably watching him right now from heaven. Then of course I had to explain heaven. Now I am having to explain, in Wieland's words, "Why am I just whining?" as he wipes my tears with my shirt collar.

I am so thankful that I have these surprise moments of memories. I am lucky that she hand made me such wonderful things that will be saved and played with for generations. She left us her music so we will always have her voice. I just wish she were still here.

Homeschooling on a TIGHT budget!

So I had big plans for curriculum this year but when it came time to order, I really didn't have the money. So, here is the plan as I see it at this point.

1. I ordered "Writing Strands 3" off ebay for a total of $11 and some change, including shipping. This was one item I really wanted an couldn't get at the library.

2. I have decided to work Westin through the Math U See online printable practice sheets rather than buy the entire curriculum at this time. I think we will finish with the section that I think he would be in and then when we are ready to move on, order the actual curriculum. He is kind of in the middle of a series at this point so I feel pretty comfortable with this decision.

3. For science we have decided to make use of this great telescope my dad is letting us borrow. So we are going to be studying astronomy.

4. For history we are continuing our study of US History. We are going to be using "The History of US" by Joy Hakim. I think we will start on volume 4.

5. We just finished reading "The Indian in the Cupboard" and even watched the movie. We have discovered there are numerous sequels to this book so we plan to go through those one by one.

6. As the election approaches we are going to learn about the voting process, presidential requirements and the electoral college. Why not, it only happens like this every 4 years!

7. I will be purchasing "Mind Benders" A1/A2 software for the computer. It is a logic game. I decided on the software as I tend to give too many hints. This way the computer can control it and deduct points.

Oh, and Wieland will be right along with us for most of it! (Ask me how I feel about that in a week) I am going to start him on "The Well Trained Mind".

If you are reading this, you might be thinking, "What would Michelle like for her birthday?" Amazon gift cards!

Wow! What it is like to be on the receiving end of negativity

Today I was woken to a phone call from a member of our homeschooling group. She wanted to know if I had seen a recent email that she received. A member (now ex member) of the group completely trashed me to the entire yahoo group for our homeschool group. It was very negative. It was a complete attack. It came from a place of probable misunderstanding. It definitely came from a place of hurt, on the part of the attacker. After she left her hate message she unsubscribed from the group. Kind of a cowardly thing to do. Then another member followed her lead and left a nasty message and withdrew. So far, that is the end of the fall out, but I can't help but think there is more coming.

So how do I respond and do I need to respond, that is the question. The fighter in me wants to set the record straight. I would love to point out that she probably feels that her toes are being stepped on since we have tried to reorganize the group. She obviously feels I am the ring leader. And basically I think I just took the brunt of her anger.

Problem, by responding she wouldn't even see it as she isn't a member any more. Second, it isn't like my response is going to change her opinion of me. Third, the entire incident (email) has kind of been ignored which could be a good thing. Do I really want to bring it up? Lastly, I really think she had already stepped back from the group since the reorganization and this was her way of going out in a blaze of glory.

So do I need to respond? If so, how do I do it? I feel like I need some reassurance that her feelings are not the majority. If they are, I would be happy to step down from my position. But if they don't feel that her email was appropriate, I would like to know it.

The second girl that jumped on the band wagon I THOUGHT I had a good relationship with. So that is where I am puzzled. That is what makes me question what I have been trying to do. Who else feels that way?

Well, I think I have rambled enough. If you are reading this and you happen to have seen the emails and would like to post your suggestions, they would be much appreciated.

Winding down from the Homeschool Blast

Today was a really hot and HUMID day! I am sitting here on my couch so tired, probably from the heat. I spent my afternoon at the Homeschool Blast. It is a local gathering of homeschoolers and vendors, here in the Kalamazoo area. I should be cleaning house getting ready for Wieland's birthday party tomorrow, but I just don't want to move.

This year was much different than last year's blast. I actually felt like there were a lot of people I at least recognized! I must be really entering the "counter culture" :) Homeschoolers are homeschoolers are homeschoolers! We might all homeschool for different reasons, but we are still homeschoolers. It is always inspiring to see the homeschoolers in the area in one place. We are not alone in our homeschooling journey, though it might sometimes feel like it. There are so many of us out there, so many resources.

I also enjoyed visiting with Nikki and her family. We got to spend a lot of time together and it was enjoyable (like always). It is nice to have a family we all click with. THAT doesn't happen very often around here! :)

Okay, I am sunburned (although I swear I was in the shade all day) and really beat. I am heading to bed so I can get up and whip through this house.

Westin Update

We upped his anti seizure (Trileptal) meds just a tad. We haven't seen any side effects to the adjustment which is nice. When he started on them he was wacky for a few days. I don't think he would have passed a sobriety test! I don't think we would have seen another seizure any time soon so it doesn't surprise me that we still haven't. It is hard to say if the dosage works. It works as long as we don't have one. :) Most people that have a seizure never see another, even without meds. I sure wish we would have been that lucky.

Before we upped the medication Westin was able to take it in pill form. But now we upped it such a small amount we were forced to go back to liquid, which Westin hates. But I guess you do what you have to do.

The funniest thing was that Westin tried to blame our math work from the day before the seizure on why he had the seizure. So after taking a few days off, he tried to tell me that the math was going to cause another seizure...nice try :)

Rounding up some prayers

As many of you are looking to see what went on with Westin this morning, I am taking this opportunity to recruit you to say a little prayer for a courageous women I don't even know. I came across a blog recently thanks to my friend, Shawna. She is helping a local woman that is battling IBC. Here is her blog: http://clergygirl.wordpress.com/ She is in surgery this morning for a double mastectomy. She has young children and I can't help but try to imagine myself in her shoes. Just keep her in your thoughts today.

Seizures, how do you know when they are from low blood sugar or from epilepsy?

At just barely before 7 am this morning I woke up because Westin woke up. Aaron, my nephew, spent the night last night and Westin wanted to camp out in the living room last night. Of course, Wieland also thought that was a great idea. Jason, being the protective parent that he is, especially since the epilepsy diagnosis, wanted me to sleep out here with the boys. I didn't mind as I find the couch more comfortable than my bed.

Wieland was a little pisser. He kept everyone awake longer than any of us wanted. He was just so excited to sleep next to his big cousin, Aaron. I kept getting after him and finally just turned the tv off after I was done watching Tori and Dean. Even then it took a little while to get that little monster off to dream land. In the meantime, Westin was trying really hard to go to sleep, and here is the key-stay asleep. He knows that being over tired can lead to seizures and he is very mindful to not stay up too late anymore. So finally about midnight everyone was sleeping.

Back to the 7am wake up. I noticed Westin sit up and I hadn't checked his sugar in a few hours (we didn't have his cgms on) so I was highly alert to him, always wondering what his blood sugar is doing. This morning he didn't seem right. So I got up to get him something to drink, thinking his sugar was low. I was really alarmed. He really wasn't right and I knew I had to get him something quick. As soon as I headed towards the kitchen I could see the seizure starting. He was fully alert though and trying to talk to me, even still sitting up. I knew I couldn't really give him juice as he was having this small seizure that was affecting his mouth. I decided I would go grab the glucose gel, thinking I could just squirt it in his mouth. I couldn't find it. Westin will testify that I was running in circles around the kitchen to the dinning room, rummaging through my purse thinking the gel might be in there. (I never found it and I am sure I have some in my purse, but in the moment could not find it!) I looked back in the living room and the seizure had stopped. I thought, "Good! Now I can give him some juice." But I also thought, "Why did he stop seizing? Maybe his liver kicked in." It never occurred to me that this was an epileptic seizure. I am just not conditioned to think of it. I had him start sipping the juice and as those thoughts went through my head I decided maybe I better check his sugar...120...definitely not a low sugar reaction. It dawned on me that he just had another epileptic seizure! It had been since the end of May and I guess I had gotten comfortable, thinking the meds would completely control them. It really never crossed my mind at the moment of the seizure that it wasn't a low seizure.

In retrospect I guess I am relieved that it wasn't a low. Low seizures I think would do more damage than a benign rolandic seizure. Westin was a little shaken up after. It took him a few minutes to have full control of his speech, meaning he didn't speak right, like his mouth didn't move right. So when he was able to talk and be understood, he expressed kind of the same feeling I did. He was finally comfortable that he wouldn't have a seizure. He actually said, "Great, now I am going to start worrying about going to sleep again."

I have a call into the neurologist to see if we need to up his dosage or wait to see if it happens again. It was very mild and if my kid didn't have diabetes it probably wouldn't have seemed like such a big deal. It lasted maybe 15 seconds. I feel some more grey hairs earned this morning! :)

It's Official!!! BCBS of Michigan (MICHILD) is Paying for our CGMS Sensors!!!!!

Thursday I received a check for reimbursement for sensors I purchased last year for Westin. It was only for the time that we had MICHILD, but still a $465 bonus! Mind you, sensors are $35 a piece. We weren't wearing it full time until I got some very generous donations this spring. Now he has it on all the time. We are still using our supply of donations. :)

So I got the check and I have been afraid to cash it. The same day the check came, I got a call from BCBS and I have yet to get a hold of them, or them to return my call, to see what they needed. I couldn't help but think that they were calling to say the made a mistake.

Today I got "THE LETTER" explaining that (and I quote), "After further review of the claim and supporting medical documentation, we have determined this service is payable."

That baby is going to the bank on Monday!

Our 4th of July Weekend...

Not much happening around here this weekend. The neighbors invited us over to watch their firework show, thanks to a trip to Indiana! (Most fireworks are illegal in Michigan.) It was a pretty good show for an individual! I can't imagine how much they must have spent.

Wieland really liked the fireworks and asked if we could get some more sparklers today. So we did and he really enjoyed lighting them. Tomorrow we will celebrate, my niece, Carlie's 3rd birthday.

KHC has a table at the KAHSA Homeschool Blast!

YES!!!!!!!!!!!!!! I am relieved, happy, shocked, the list goes on and on. We will be considered a vendor so there will be no confusion or assumption about whether we are a KAHSA support group.

REQUEST FOR CGMS: DENIED BY INSURANCE

Westin started using a continuous monitor in June of 2007. Before starting the monitor his a1c's ran around 8.0. After only a month of use his a1c dropped to 7.2. His last was down to 6.5!

After two attempts for reimbursement (we pay out of pocket) I finally got our first denial from BCBS of Michigan (MI CHILD). It was a silly reason for denial, stating it wasn't prescribed by a doctor, which is ludicrous. I have since faxed a copy of the prescription and am waiting for my next denial, as I don't assume this will be an easy or short process.

This technology is amazing and it isn't "Cadillac Care" as some have referred to it. Having a continuous glucose monitor, which reads your "blood sugar" every 5 minutes, is like dealing with diabetes with the lights on rather than in the dark.

You can follow the link above for more information about this day of awareness.

"The Education of Shelby Knox" on PBS

Last night I happened upon a documentary on PBS called "The Education of Shelby Knox".



Here is the synopsis from PBS.org: As the nation reflects on the outcome of the recent presidential election, "moral values" is a factor often cited in George Bush's win. A look at the "red" and "blue" states paints a picture of "red" voters who embrace traditional religion and family life, and reject what they see as the erosion of American ideals and culture that the "blue" states represent.

Federally funded, abstinence-only sex education is part of the equation, sparking an intense national debate. Sex may be everywhere - in music, television, fashion and movies - one argument goes, but schools need to give teenagers the tools to resist peer pressure and say "no." Won't teaching about sex only encourage teens to try it? Opponents say that withholding information about condom use and birth control will only lead to unwanted pregnancies and sexually transmitted diseases.

For more information about "The Education of Shelby Knox," visit shelbyknox.org.

Into the culture wars steps feisty teenager Shelby Knox of Lubbock, Texas. Although her county's high schools teach abstinence as the only safe sex, Lubbock has some of the highest rates of teen pregnancy and sexually transmitted diseases in the nation. Shelby, a devout Christian who has pledged abstinence until marriage herself, becomes an unlikely advocate for comprehensive sex education, profoundly changing her political and spiritual views along the way.

Texas public schools have had abstinence-only sex education since 1995, when then-governor George W. Bush signed a law making Texas the third state to follow the curriculum. The "abstinence-only" initiative gained national attention in 1996 when President Clinton enacted landmark welfare reform that included grants for abstinence programs. In November 2004, Congress included more than $131 million for abstinence programs in a spending bill, an increase of $30 million but about $100 million less than President Bush requested. A national evaluation of abstinence programs has been delayed, and is expected in 2006.

In the fall of 2001, Shelby, then a 15-year-old high school sophomore, budding opera singer and politically conservative Southern Baptist, joined the Lubbock Youth Commission, a group of high school students empowered by the mayor to give Lubbock's youth a voice in city government. "We get no [sex] education at all in school," says Shelby in "The Education of Shelby Knox." "Maybe twice a week, I see a girl walking down the hall pregnant... It's part of normal life at my school. If a student asks a teacher about sex, the teacher by policy is required to answer with 'Abstinence is the only way to prevent STD's and teen pregnancy.'... If they don't, they're in danger of losing their job."

Shelby attends a youth assembly called Love, Sex and Dating, held by charismatic local pastor Ed Ainsworth. "If they say there's no information at all in the schools, then they haven't listened to me," he says. "Safe sex? You have been lied to, kids," he tells them, warning them not to get hurt "physically, mentally, emotionally, and financially" by being sexually active. Ainsworth's seminar, with its religious references excised, is also given in 200 Texas junior high schools as part of a national movement called "True Love Waits," which claims 2.4 million teen "pledgers" since 1993. Shelby links hands with the other teens, promising before her parents and God, "On my wedding night, that night will be my first time."

Although committed to her personal vow, Shelby is not convinced that Ed Ainsworth's lectures constitute real sex education. "Every time we said we wanted sex ed, everyone said 'Sex Ed' was already doing it, but he's really doing something very different." The Youth Commission decides to fight for comprehensive, fact-based sex education in the town's public schools. Shelby takes up the campaign with missionary fervor and runs for "mayor" of the Youth Commission, but another teen, Corey Nichols, wins and she is devastated.

Two distinctly different personalities, Corey and Shelby spend the next year trying to advance their cause of comprehensive sex ed while attempting to outdo one another. As they bicker through a range of activities, Shelby increasingly defines herself as a hot-tempered activist. Corey, in contrast, emerges as the diplomat, a politician in the making who sees no good in confrontation, insisting instead on compromise.

Shelby finds herself in a difficult position on the home front, too. Her parents are supportive, but they are also concerned about the stress the campaign is putting on her, and by Shelby's increasingly liberal attitudes. When they suggest she quit the commission, Shelby explodes, "I'm not dropping out... I have power there."

On the public level, the youth group is getting extensive media coverage but little attention from school officials. After repeated requests, the school board finally allows them to present their recommendations. Although the school board listens, the members are not persuaded, and it becomes clear that the district will continue to implement its abstinence-until-marriage sex education in the city's high schools. Again, Shelby refuses to give up.

Shelby now allies herself with a group of gay students who have been denied the right to form a gay-straight alliance in school, feeling it will galvanize her campaign. This is not a fight that Corey and the kids on the commission, afraid of adding more controversy to their already contentious agenda, want to join. Soon after, the mayor of Lubbock announces that he is considering doing away with the youth commission because of a city budget shortfall. Corey shows his penchant for political compromise and saves the commission by agreeing to operate without funding and, in the process, abandoning the sex education campaign. An infuriated Shelby decides she can work more effectively outside "the system." Accusing Corey of betraying a cause he claimed to champion, she resigns from the commission.

By her senior year, Shelby is committed to working with the gay teens, who have decided to sue the Lubbock School Board. She has also declared herself to be a liberal Democrat, a turn that shocks her Republican parents. But when an organization whose slogan is "God Hates Fags" comes to Lubbock to protest the gay kids' lawsuit, Shelby, along with her mother, joins a counter protest, carrying a sign that reads "God Loves Everybody," and affirming a belief that will guide her into adulthood: "I think that God wants you to question," Shelby says, "to do more than just blindly be a follower, because he can't use blind followers. He can use people like me who realize there's more in the world that can be done."

Shelby is now a sophomore at the University of Texas in Austin, where she is studying political science. She continues her activism for comprehensive sex education. Visit our Update section, where Shelby answers questions about her life today. Send in your own question for Shelby. »

"The Education of Shelby Knox" is funded by grants from the David and Lucille Packard Foundation, the William and Flora Hewlett Foundation, the Brush Foundation, the Wallace Alexander Gerbode Foundation, the Columbia Foundation, the Lalor Foundation, the General Services Foundation, the H. van Ameringen Foundation, the Playboy Foundation, the Trull Foundation, the Independent Television Service (ITVS) and American Documentary, Inc.

I feel like I am a Shelby Knox!

The part of the movie that I felt was very relevant in my life right at this moment was when Christianity as an intolerant religion was discussed. Maybe I am completely wrong, but my understanding of Christianity is that it "should be" a tolerant religion. "Love one another." What happened to that? My belief is that God is the only judge. Let us just love one another and let him do the judging. Let's be tolerant of each other, as we are all humans, despite our lifestyle or our religious beliefs.

Thanks for listening. Check out the movie! You rock, Shelby Knox!!!!!

Neurologist Update

We saw Dr Fain, pediatric neurologist, today. This is our followup from our hospital stay a month ago :( Westin looks good and he thinks he will keep him on the medication for 2 to 4 years, based on his age. It is really a puberty issue and once puberty is done, the epilepsy probably will be too. Crossing our fingers!

Letter to the Editor was Published!

Published in the Kalamazoo Gazette on June 23rd:

Insulin pumps can be monitored; what's needed is a cure for diabetes
Monday, June 23, 2008
BY MICHELLE CURTIS

In the May 5 Kalamazoo Gazette there was an Associated Press article about the dangers of insulin pumps. I waited anxiously for the flood of e-mails and concerned calls, ``warning'' me that my son's insulin pump could be dangerous and cause death. Sure enough, by 9 p.m. I got my first call.

I think it is important, at this time, to explain why an insulin pump is used. My son was diagnosed when he was 2 years old, in 2000, with Type 1 diabetes. It is also known as juvenile diabetes as the majority of diagnoses take place in children.

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Type 1 diabetes occurs when the pancreas, through an autoimmune malfunction, is attacked by the body and stops creating insulin. Insulin is used by the body to convert sugar into energy. Insulin is a hormone required to sustain life.

At the time of diagnosis he had been drinking heavily, urinating frequently and finally sleeping non-stop. I took him to the pediatrician on a Monday afternoon to find that he had also lost a considerable amount of weight.

Our doctor sent us to the lab and by 11 p.m. that night we were rushing to Bronson Methodist Hospital as our frail 2-year-old was in diabetic ketoacidosis (DKA), a life-threatening complication of untreated diabetes mellitus.

We spent a few days in the hospital as his body chemistry was corrected with insulin and our family was taught how to give life-saving insulin injections. It was a brand new way of life. No more carefree living. We were checking blood sugars every couple of hours and giving shots at least 4 times a day. That's just the tip of the iceberg of diabetes care. Every day creates new challenges.

At night I find that in order to be at peace, I wake every three hours to check his blood sugar, just to know that he isn't too high or too low.

Every time my son wants to go outside and run around and play like other 10-year-olds, I find myself worrying about his blood sugar, almost wishing he would just sit still. Every change in activity changes insulin requirements. This leads to even more blood sugar checks and less sleep for mom.

Being 10 years old, he is going through growth spurts which can greatly increase insulin requirements.

Every time he gets an illness, especially a stomach virus, I have to play this strange game of trying to get a sick child to eat so that I can get his blood sugar elevated so that I can give him insulin, as the body needs it to stay out of DKA. Then it starts all over again. Many times with young children and occasionally with older children this leads to a hospital stay.

Six years ago, when he was 4 years old, I requested my son be put on an insulin pump. Pumping insulin, unlike injections, is more like what our pancreas would do naturally. The pump delivers very tiny doses of insulin continuously. Then when food is consumed that requires dosing, extra can easily be delivered.

This eliminates at least four insulin shots daily and replaces them with one infusion set insertion every three days. The infusion set puts a tiny Teflon or metal catheter under the skin. This is where the insulin is delivered. We have found that using an insulin pump has made life with diabetes a little easier and less scheduled.

The problem with pumping insulin is that if there is a problem with the delivery of insulin it can become life threatening. Insulin is a lifesaver to my son. Without it he will die. If blood sugars are not regularly monitored, at least four times a day, a problem with delivery of insulin can go unnoticed and DKA, possibly leading to death, can occur. In the reverse, if too much insulin is given, via pump or injections, hypoglycemia can occur resulting in seizures and possible death. So whether pumping or injecting insulin, Type 1 diabetes is dangerous.

The point I really want to make is that having Type 1 diabetes is dangerous. Let's not focus on the delivery method but rather getting a cure for this disease. Very little has really changed in the treatment of diabetes since the discovery of insulin in 1921 by Frederick Banting and Charles Best. We have great technology as far as delivery and management, but we really need a cure. Insulin is not a cure.

Michelle Curtis is a resident of

Lawton.

FINALLY Got 1st Denial of CGMS!!!!

So after two attempts for reimbursement for our sensors for our continuous glucose monitor, I finally noticed our our Explanation of Benefits that BCBS denied due to "not prescribed by doctor". That was easily remedied by faxing over a copy of the prescription. What will be their next reason for denial? I have a feeling this will be a long process!

On the neurologist front...We FINALLY have an appointment on the 25th to see Dr. Fain! I am currently reading "Seizures and Epilepsy in Childhood A Guide for Parents". I should either have LOTS of questions or none at all. We will see.

Will we EVER see the Neurologist?

Jason has been panicking lately that Westin will run out of anti seizure meds before we get in to see Dr Fain, our pediatric neurologist. His script was only written for 30 days as it was supposed to be renewed at our follow-up visit. Problem is, our follow-up visit hasn't happened as Dr Fain was out sick. Today I called to see about getting another appointment. They were suppose to call me to reschedule but instead this is call number 2, trying to get something on the books. "They have to talk to the doctor to see when he can see us." So I call today to be told that Westin isn't a patient of Dr. Fain's. He isn't listed anywhere in their office. Dr. Fain has never billed him, yada, yada, yada. After I get irate from being told we never had an appointment that was canceled, etc, etc. I asked them to look him up with his last name as his first name as Bronson Hospital tends to get it backwards...ta da! Suddenly we existed! SO....then they were more than happy to help me. I got a script called in but no appointment. "The doctor isn't in today. He will be in tomorrow and then I (the scheduler) can ask him when he can see you." Ah, the saga continues. :)

UGH!!! Website HORROR Story!!!

I spent HOURS today working on my new site www.HomeschoolKalamazoo.com I put in all sorts of links and such. After I did a spell check everything went wacky! When I uploaded it put things in wacky places and deleted all sorts of things. Could it have deleted something small? NO! It deleted my LONG list of local links! I called support and they showed me where I could find a back up but of course I lost all that work I did today.

My head hurts and I need to start dinner. What a waste of a day home, without Wieland interrupting. So if you look at the website, nothing has changed today, including the spelling errors. I am walking away from the computer before my head explodes!

Home Education Night presented by KAHSA

So last night my friend, Nikki, and I went to check out the Home Education Night at the Portage Library. We wanted to see how they presented it, as we are trying to put something together for the fall. It was so energizing. The event left me anxious to work on our own KHC homeschool group (Kalamazoo Homeschool Connection) and make it better. I am not saying that the event itself energized me, but it did get my creative juices flowing! It was a panel of experienced homeschoolers, there to answer newbie questions as well as questions from us "younger homeschoolers". The panel was mainly parents with children that had graduated highschool. I found myself almost sitting on my hands in an effort to contain myself. I wanted to be on that panel. There was a lot of perspective missing.

I was delighted to see another KHC member there. I wish that I would have made it a point to post the event to our group.

Nikki and I returned home and talked for quite some time, making plans for our own "Thinking of Homeschooling" night. I will be posting more details very soon!

I did make a connection with a man representing the Kalamazoo Homeschool Sports. I am hoping someone will get some information over to me so I can post it on the new homeschoolkalamazoo.com

New Homeschooling Site for Kalamazoo

Today was the launch of www.homeschoolkalamazoo.com

It is a clearing house of information for homeschoolers in the Kalamazoo area. It includes a calendar with events from all sorts of sources including Kalamazoo Homeschool Connection and KAHSA.

Pass the info around. Check out the site. What can you contribute?

Why We Started Homeschooling?

First, if you are looking for an update from the neurologist, they canceled the appointment. The doctor is ill. I don't know when they will reschedule yet as they have to talk to the doctor. They wanted to put me with a different doctor, but for continuity, I declined, which seemed to throw the girl for a loop...**SHRUG**

So, today we (Westin and I) are home, enjoying the quiet. Wieland is spending the day with Nikki. I can't say it is all that quiet as I have been cleaning house to AOL Radio! So what is the schedule today? It started with breakfast and meds. Westin and I did a section of math about the relationship between fractions and decimals. I tried to take a walk but about 10 minutes into it I heard thunder and thought walking out in the field with a storm coming in might not be a good idea...great science experiment...but not a good idea :) I came in and got my breakfast and Westin and I did some Tangrams. Since then Westin did his chores and cleaned the bathroom. I spent way too much time, as usual, on childrenwithdiabetes.com ...oops! Seriously, I did clean the kitchen and vacuum the house in between checking the forum. I am going to write this blog and then we will do some more math. We got our language arts finished up for the year so we can hopefully blow through the rest of the math and be a little more laid back for the rest of the summer.

So, why did we start homeschooling? Back in 2000 when Westin was diagnosed with diabetes, Jason said, "I guess you will be homeschooling!" I said, "What!?" There was no way I would be homeschooling. I was anxiously waiting for the day that I could send him off to school and enjoy my days to myself, to go to lunch with friends, to go back to school, etc. Westin started in "Young Fives" at Paw Paw and moved to Kindergarten at Mattawan. All went really well. We had a little issue at "Young Fives" but K was fabulous. We had a wonderful teacher and the office staff was very helpful. It was only half days at that point and there wasn't much that could go wrong. It was when 1st grade started that things got crazy. The school suddenly realized they had a diabetic in the early elementary. Suddenly I wasn't qualified to train the staff, due to liability, and being in school all day left for a lot of hours where issues with Westin's diabetes could arise. I had issues with the woman in charge of care for Westin and the principal. Those were the main "offenders" as I see it. By the week of Thanksgiving, I was ready to pull him out. I was actually dreading sending him to school. After I pulled him out of school, I wrote this letter. I never sent it, but it did help me feel better to document it all.

When I pulled Westin out of Mattawan, I had every intention to put him back in school in 2 years when he would enter the Later Elementary. I figured he would be older and we would be dealing with all new staff. It has now been 3 1/2 years and we love it! I have NO intention of putting him back in school. I have always maintained that if the day comes that he wants to go to school, I will definitely send him, but I don't foresee it anytime soon. I also look forward to homeschooling Wieland as he is more open to the learning process. He hasn't been made jaded by the school system. He just has a different way about him, compared to Westin. Even with Westin not "wanting to learn" it is still enjoyable. I am blessed to have been given the opportunity to try it. Of course, until I decided that I was going to do this "homeschool thing" 100%, it was not so enjoyable. Until I decided to let go of the idea of sending him back to school, always feeling like we had to be on the same schedule and curriculum as the school, always feeling behind, I couldn't really love the process. Thanks to some great role models in the Kalamazoo Homeschool Connection, I let go of those expectations and freed myself of what education is suppose to be, according to the public school system. I started studying "unschooling" and embraced the idea that a lot of what our children need to learn is in "real life". We aren't anywhere close to traditional unschoolers, but we definitely do our own thing. There was this magical day when I started to think like a homeschooler. I saw learning experiences all around me. It was an amazing shift for a woman that grew up really loving school. I enjoyed the entire experience. I did well academically (it was actually really easy), I participated in sports, I had great relationships with my teachers and administration. It was a big shift when I came to accept that "regular" school wasn't really a necessary part of childhood.

Homeschooling definitely isn't for everyone! But if you think you are interested in it, check out some local homeschool groups, try out the lifestyle for the summer, or whenever, and see if you can make the switch. It can be a very rewarding experience for your entire family.

Where do you start? Well, first you need to know that it depends on your state. In the state of Michigan there is no reporting or testing. You simply just start. I did inform my school district that we would no longer be enrolled. Then I suggest taking a little time to "deschool"...hopefully it will help you and your family regain the love of learning.

The all important, at least I think, is finding a support group that fits you. I became very discouraged by what what available in my area when I first started looking for a group. There is a big group in the Kalamazoo area that I just didn't fit in with. I finally threw my hands up in the air and decided to start my own group. At that same time is when I found the group that worked for me. I needed an inclusive group. I found the variety of families in our group to be enlightening, refreshing, educational in itself. It was a wonderful mix of different beliefs and was exactly what I wanted out of homeschooling. I definitely wasn't homeschooling to protect my child from the world. I wanted to experience new things and other's experiences. So, don't give up. There are plenty of different kinds of groups and when you find the right one you will know.

I, along with a couple of friends, am putting together a "Thinking of Homeschooling" night here in Mattawan, probably in August. Watch this blog for further details. Also, always feel free to email me.

Monday, a new day...the start of Summer (Home) School

Well, this was meant to take place last Tuesday but with the events of last weekend and the adjustment to the new anti seizure medication, we took last week off. Today we get back to work! While some homeschoolers take the summer off, we work all year. Why? We are a little more laid back and don't keep to a strict schedule, so why not? It isn't like we schedule around our school work, we do school work around our schedule.





So what will our summer school day look like? I can't predict tomorrow, well I might be able to, but today looks like this: It is almost 8am and everyone is still sleeping. I need to get Westin up so he can get some food on his stomach to take his medication. After breakfast and meds I think he will get his chores done (picking up the living room, emptying the bathroom trash, picking up his bedroom (well, room without a bed) and any dirty clothes laying around the house. Then we will do some tangram puzzles, followed by some handwriting practice. Then he will need to complete 3 Language Arts assignments and 1-3 math assignments (depending on how long they are and how difficult) on http://www.time4learning.com/ That will probably be all. We might find a science experiment to throw in the mix.





Tomorrow is a work day, meaning Wieland will go stay with Nikki (friend that does daycare and also homeschools) and Westin and I will ride into town with Jason to the shop. During our time in town we will grocery shop and head to the Kalamazoo Public Library to see if we qualify for a library card as business owners in Kalamazoo. Then we are checking out our new read "Founding Mothers". So this will get added into our daily homeschool routine. After we get whatever needs to be done, done, we will come home and enjoy some quite time without Wieland. This will give us more time to do school work, clean house, enjoy the silence. :)





Well, off to summer (home) school!

Stealing Time When Everyone is Sleeping on the Living Room Floor

Boy, it is really hard to "steal time" for myself, including writing in my new blog! As I sit here, on the couch, everyone is laying down for bed. Mind you, they are laying on the living room floor, where we have been camping out since we got back from the hospital. Jason is still uneasy about the possibility of another seizure. He feels he can watch Westin better this way. I honestly don't mind as I get the couch and I don't wake up with my usual back pain. FYI: memory foam type mattresses aren't the best choice for overweight people, at least not me! So, it is like camping in the living room. Westin is on a twin mattress. Jason and Wieland are on a blow up mattress. It isn't too different from our normal arrangement. Normally we are all in our master bedroom.

It started when Westin was 2 and diagnosed with type 1 diabetes. When we brought him home from the hospital we moved his full size bed into our bedroom. (Our bedroom isn't that big so imagine it will a queen and full bed plus dresser.) I would sleep right next to him, to watch for sweats or a change in breathing, anything that would let me know something was wrong. For some reason I didn't think to just check his blood sugar. Later we had a twin day bed sent our way from a friend of my mom. That opened up a lot of room, but now I was sharing a twin with my 3 or 4 year old. Anyway, it worked. Then, when he was 4 and had just started pumping insulin, I was, for the first time in 2 years, doing night checks. I never had checked Westin's blood sugar at night before then. During the start up on the pump, our trainer asked us to do 3 am checks. We went from being use to chasing highs with insulin to being coached to keep his numbers much lower which meant chasing lows with food. We got a little too comfortable and one spring morning, right after waking, Westin had his first and only hypoglycemic seizure. After that day, I became a maniac about night checks. Every time I would wake at night, I would have to check his sugar. I couldn't go back to sleep worrying that I might have woke due to my mother's intuition. What if I was suppose to wake up to check his sugar? For a period of time we did put Westin back in his own room. And for some time my husband and I would take turns going to check his sugar. If I woke, I would either go do it myself or have to wake my husband to go do it. Eventually, Westin just ended up back in our room and I pretty much do all the checks. It works for us.



So along came Wieland. A few months after his 2nd birthday he proved he could climb out of his crib, which was in his own room. So for a little while we got by by extending the top of his crib with a gate and some zip ties. I wish I had a picture to share. It was a little barbaric and family would tend to ask if I was still caging my child. So when he was old enough to handle sleeping on the floor, without too much disruption, we moved him to the floor with Westin, right next to the bed. Everyone is happier this way and I don't have to walk across the house to do the never ending blood sugar checks. We have decided to embrace the idea, rather than beat ourselves up over it. I purchased a queen bed frame that is meant to have a trundle. And I even got a full size trundle frame. Now I just need to scrape up the money for a full mattress. (And a new queen mattress...have I said how much I hate my mattress.)

Now some of you are still probably wondering why I check Westin's sugar up to 10+ times a day?! Westin's blood sugar is never what you would call stable. Remember, type 1 diabetes is a balancing act. They don't have the benefit of the body doing the self regulation. They are completely dependant on the insulin we inject or pump into the body. You are always trying to balance food and insulin. A little too much insulin and you are fighting lows. Too little insulin and you are fighting highs. A little too much exercise and you are fighting lows. An air bubble in the line from the pump and you are wondering if the resulting high blood sugar is from a bad infusion set (where the insulin enters the body), too little insulin, oncoming illness, growth spurt, air bubble, full moon? It is a constant guessing game. So how could I possible sleep well at night for 8-10 hours without multiple blood sugar checks. SO much can change in 8-10 hours! Would I go 8-10 hours during the day without checking him? Absolutely not! I wish I was a heavy sleeper but I am not.



On the topic of sharing a room, we have a three bedroom house and are only using one bedroom for actual sleeping! Why not consider turning our house into a co-op? I say that only half joking. If I could find the right family, I would actually consider having a family live with us and share expenses. We have the room! Ideally it would be great if it were another homeschooling family, especially with another little one. Nothing is harder than trying to homeschool with a 2 year old....well, when it comes to homeschooling that is probably our biggest challenge. We definitely face harder challenges throughout the day.


Okay, so I really got on here tonight thinking I would explain why we started homeschooling. Maybe I will save that for another day. I think I would rather head to bed...well, lay down where I sit typing this (the couch) and go to sleep...after I check Westin's blood sugar of course :)

Oprah Show Idea: Faustman vs Type 1 Diabetes

Some other parents on Children With Diabetes decided to bombard Oprah with videos about type 1 diabetes. This is my attempt. I have sent this video to Oprah and a similar one to numerous other news organizations. I have had plenty of positive response to the video, but not from any media outlets. I have had parents contact me, letting me know about fundraising events spurred by this video. Others have made personal donations to http://www.faustmanlab.org/. 25 million is needed to start phase 2 trial sometime in 2009 or 2010, whenever they are ready to proceed. Will this be the cure? We don't know. Will it be a cure for all with type 1? We don't know. But the fact that she is an underdog (Dr. Faustman) is enough to get me riled up. The fact that she isn't backed by Big Pharm gives me hope.

Lately, with Westin's additional diagnosis of epilepsy, family members have asked what they can do to help? Even though we hate the additional diagnosis, we hate diabetes even more. All these diseases are manageable but diabetes affects our lives all day everyday. We need a cure. So what can you do? You can make a donation at the link above in Westin's name. That would mean a lot to us.

Advertising

So you might be wondering what is up with all the ads on my page? Well, in the long run I hope to offer some useful links to items I use and recommend. Maybe I might even make a little income off of it.

Westin, though covered by insurance, uses a continuous glucose monitor that is NOT paid for by insurance. A little extra money in this self employed household could go a very long way!

So if you have an Amazon purchase in your future, think of heading to my site first and going into Amazon that way. I would really appreciate the help.

Pediatrician Follow-up

We met with Westin's pediatrician today after this weekend's visit to the ER to be diagnosed with epilepsy after two seizures in a row. The first happened around 1:20am and was a grand mal or tonic clonic and lasted a good 5 minutes (not typical of the type of epilepsy he was diagnosed with, most are far less severe). In the ER before being discharged he had another, but not quite as severe. After the EEG our neurologist reported back to the pediatrician that Westin appears to have Benign Childhood Epilepsy with Centrotemporal Spikes (BCECTS), also known as benign rolandic epilepsy. The pediatrician assured us that this was really the best case scenario. According to some papers he printed off for me with more information, is makes up about 10-20% of all childhood epilepsies. The average age of onset is 9 (Westin is 10) and generally go into spontaneous remission before the age of 12 or 13. Most BCECTS is not treated with antiepileptic drugs, which did not sit well with Jason when I passed that info on to him. He (We) feel better right now with him on the antiseizure drugs.

We meet with the pediatric neurologist next Thursday so I will find out more then.

Introduction

My name is Michelle. I am a 32 year old mother of two boys. I have been married to my husband, Jason, for 12 years. We live in a small town west of Kalamazoo, Michigan. I started homeschooling in the fall of 2004.

My oldest son, Westin, 10, was diagnosed with type 1 diabetes at the tender age of 2. By the time he was 8 he was diagnosed with celiac disease (he can't eat gluten) which is also an autoimmune disease, like type 1 diabetes and shortly before that he was diagnosed with asthma. Now, just this weekend he was diagnosed with epilepsy.

Westin loves to play video games and isn't into doing any sort of homeschool work. He isn't naturally inquisitive and that makes teaching a challenge. I try to embrace what he loves and find ways to incorporate it into a little extra learning. There are some things that can be learned from video games, believe it or not.

My youngest son, Wieland, is 2 years old and healthy, so far. As a mother of a child with all these problems, you can see why I say "so far". He is a very inquisitive boy and I look forward to homeschooling him.

I want this blog to document the trials, the joys and the issues in homeschooling and caring for a child with many medical needs. I wish it to be funny, yet informative. I hope you enjoy. Oh, and I want it to be therapeutic to me, as I need it! :)