A Day To Remember
September 11th, 2001 holds an important meaning to many people in most developed countries of the world. To me, it brings up many other feelings... feelings that the family members of almost 3,000 people wish they could feel... My feelings? I'm grateful that my son is alive. On September 10, 2001, Jonah had a bit of a cold, and I went into the twins' room to get them up for the day and Jonah was awake, sitting in his crib, but looked unusual...his lips were purple but looked like they were turning back to their pink, normal color. I really didn't think too much of it, but shortly, I would be. Maybe an hour or so later, Jonah had a series of very serious seizures that left him blue, unresponsive and not breathing. All of the medical training a person can have...it all goes out the window when its your kid. I called 911 and Jonah did start breathing again. By the time the paramedics arrived, Jonah was OK and was sitting up and giggling. We got to the hospital, where he had another seizure and he was admitted. He stayed overnight, but we knew he'd be transferred to Chicago, where his neurologist is. Well, the following day...as you can imagine, they were clearing out the city, not letting more people in! So this is where I watched the drama unfold. I remember very clearly that my sister called me in Jonah's hospital room and asked me if I was watching TV. I told her no and she said to turn on the television. I asked her what channel and she said that it didn't matter. You know its something big when you hear that. I was holding Jonah and on the phone so my hands were full and I asked her what had happened. She told me that a plane had hit the world trade center. OK...yeah, that qualifies as big. We said goodbye and I turned the television on just in time to see the second plane hit the second tower...thinking that it must have been a replay of what had happened earlier. But no, we all know now that that's not what the situation was. I continued to hold my baby and watch the developments of two more planes going down and was so saddened by what was happening...of course, by the time the second plane hit the second tower, we all knew what was going on. And it made me even more grateful to be holding my son. Jonah's pediatrician was grounded in Ireland and was not able to fly back for quite a time, but we did, after a couple days, get transferred to the other hospital...but to this day, five action packed years later, September 11th is a day that means thankfulness to me. It symbolizes childhood innocence not lost, which is painfully ironic when its considered how many children lost parents and how many people lost friends and partners & loved ones. The sadness of the day, at this date, five years later, is to me, overshadowed by a sense of "togetherness" and a people able to overcome... The cowards who did this to our country did not win. In accordance with Christianity, these monsters certainly did not go to be with Allah...they are somewhere else, a place of which they are most deserving. This is not to bash Islam or Muslims in the least, this country was founded because of religion and I do believe in freedom to choose your faith. The cowards who did this killed other Muslims...I doubt that this is called for in the Koran...I don't fault Muslims in the least for this. I fault the extremists...because it is they who carried this out and they who will ultimately pay the price for what they did...in fact, the world was automatically a better place when these people died (the terrorists on the planes, not the innocent victims, of course.)

We will hear a lot of repition today, flashbacks of painful memories and will see all of the difficult-to-watch photos and video clips of that day 5 years ago...I know I'm not going to forget, and I don't need the photos to remind me, but as a nation, as a world, let's not forget. Don't forget to pray for the families who lost loved ones. Don't forget to smile at a stranger...the rescues that took place were because of strangers...people who needed to help. We are only human, but our strength is multiplied when others need help.

I am going to spend the day at home with my boys. All three of them.

Never Forget.

Farms & Cats & Itching...OH MY!
Mood:  special
Benadryl Anyone?

We went "farm-huntin'" today...looked at three different houses. One was confusing...large and confusing...13 rooms, 6 bedrooms, pillars, stained glass windows, gorgeous chandaliers (although I was the only one who thought so) but I thought it was confusing...oh yeah, and I don't like old houses...bummer. And there were neighbors on both sides...hmmm, not really a farm! The second one was very nice, all newly renovated, but we'd have to put on an addition (and the house is already overpriced) for it to work for us. The third one was where I got exposed to cats or something else that I'm apparently allergic to...I don't particularly want or need to know what it was...but this is where the Benedryl comes in... I am beginning to feel a bit of a sleepy-buzzy-strange- quasi~sleepy buzzy feeling...How articulate I am!

Not really too much to say today. I'm feeling a lot of stress. Homeschooling with a two year old running around is pretty much just as hard as I thought it would be. Hurricaine Sam is a little sweetie...but my goodness! He is such a handful! I tell myself every moment he's awake that I need to be enjoying this stage now, because it will be gone before I know it! So, here's to enjoying the terrible twos!!!

A Sam Update & (I'm Sure) Other Random Thoughts
Mood:  spacey
Hello Everyone!

Sam's surgery (eye muscle surgery) went very well. He had a bit more bleeding than is normal, so his little eyes are very very red, and the doctor said that it would probably last a little longer than the usual two weeks...but I'm glad its over! Sam had a few seizures on Tuesday afternoon during his (VERY) short nap, but he came home Wednesday morning and is doing very well. He's playing & eating normally, and best news of all, the doctor said that at this point, surgery looks to have been a success! Sam does not seem to be in any pain, which many of you have asked...thank you for your concern...he is kind of like Jonah...we're not entirely sure how much pain he can feel or how he processes it...anyhow...he's doing very well and hasn't needed so much as a dose of Tyelenol since surgery. He does NOT like his eye drops (antibiotics) in the least...so its a fight three times a day, but we want to keep him un-infected... so its a necessary part of being Sam's mama right now.

I always seem to get headaches when one of the boys is in the hospital...not sure if it is the stress (what stress? No stress here!) or what...this time, I think that I was VERY dehydrated, not drinking enough water because Sam didn't want me to leave his sight...Anyhow... killer migraine from HELL the past couple days. The headache is mostly better today, but the nausea & photosensitivity has been horrible today...was worse yesterday...so its getting better. I had an adjustment today and will go back to the chiropractor tomorrow morning for another...hope it helps. I don't usually have migraines that last this long...this was a bad one...but I think its passing, so hopefully I won't be able to keep complaining for too long!

Sam has learned how to open doors. I don't even have to begin to tell anyone how much stress that could cause...do I? Yes, I've heard of (and liberally use) childproof doorknob covers...but my sweet angel can get them off. ugh.... OK...that's all for now... I have to gorilla glue doorknob covers onto doorknobs tonight! Fun Fun!

The Minivan Drivers...They've all gone MAD!
Mood:  mischievious
OK...today was odd...The minivan drivers of Chicago's far west suburbs are revolting...at least their driving is! I'm the proud driver/owner of a Dodge Grand Caravan (silver, no robin's egg blue for this "cool" mama!) I'd like to think that I've retained *some* of my coolness...but I don't think that's the case. No less than THREE minivans passed me in a no passing zone, tailgated me for way too long or was generally driving like an idiot while in the lane next to me. I'm a very cautious driver....on a "crazy" day, I might sneak up to two miles over the speed limit, but I do go the limit. No crazy willy-nilly danger seeking from me! I don't even like passing people on a four-lane highway! If I'm behind a farm vehicle (which happens a lot out here...) and I have to pass, I have to spit the piece of hay out of my mouth, do some deep breathing, roll up my sleeves and do about 6 "fakes" before I actually bring myself to "do it"!!! I'm even worse when the boys are in the car. I followed an old car with a trailer (carrying a demolition derby car...we see a lot of that too) for about 9 miles today...I'd just as soon hang out and wait for the road to open up or until I have to turn or they turn into the race track (or bar). OK...nuff of that...MINIVAN DRIVERS: Cut it out! Even the sports cars were more well behaved than you were today! Shame shame!

On a much happier note (I was pretty stressed about driving today...Sam's surgery is on my mind and I don't usually do well with traffic...but traffic plus mama stress is just no good!) So...happier note: Sam's second appointment of the day was with the pediatrician for his physical for his surgery. Our beloved pediatrician went "away" to be a goody-goody (no resentment...curing kids of cancer is a truly noble profession but it leaves me the choice of pediatricians who are known as the witch (although, I personally really like her! Odd, huh?), the one who has crossed me far too many times (plus I can't understand what he's saying!) or the old one who smells like coffee. Guess who we got today (since it wasn't "our" doc! GRRR) OK, well we got Coffee Doc. Coffee Doc is an older guy and scared the bejeehoohoo out of Daniel when he saw him for a sick visit. So, I wasn't looking forward to our visit today (at ALL!) but didn't feel like fighting and since I will never again see "our" doctor...so, in we go and Sam was Sir Cranks Alot because he didn't have his nap...And Coffee Doc came in, didn't smell like coffee and was exceptionally nice & more than competent. I was so pleasantly surprised. The lesson I took home today is that YES, first impressions count, but give folks a chance...even if they have coffee breath.

Sam's got a bit of a runny nose and had a slight fever today (of course!) but, we are on for Tuesday for surgery (bilateral medial rectus surgery) and his lungs are clear and as of right now...all systems are "go".

I am coming into contact with something daily that is making me itch. This is day # 3 of taking benedryl and its only 8:30 and I'm already ready (already) for bed! Crazy! I'm nervous as all get out about Sam's surgery...but can't wait to get it over with! More later...

Doctors & Doctors & Doctors...OH MY!
Mood:  don't ask
Hi Everyone,

Doing my best to try to keep my cool. I'm getting pretty anxious about Sam's upcoming surgery. He seems like he has a cold coming on, just kind of quieter than normal & has a little bit of a runny nose. He had some icky poops last night and today...so we shall see. They won't do surgery if he has so much as a sniffle, so I'm hoping that he clears up and all is well. He goes tomorrow for his pre-surgical physical and his last eye appointment for measurements before surgery... So, I'm hoping he stays healthy enough for surgery. I don't feel like going through this anxiety again. I'm an emotional wreck and am very sensitive to all of Jon's stupidity lately...not doing well in that arena.

I had a very minor reaction to a latex therapy band the other day...I had taken a benedryl before I went to work out and I didn't even THINK about it until my hand started itching. I took another antihistamine right away after washing my hands and was itchy and hive-y, but didn't have another scary throat closing reaction...boy oh boy...Its only been about a year since I developed the latex reaction and I still have a hard time remembering that I'm allergic sometimes! Its a dangerous one to forget! Sometimes the flakiness is painful! I've got to try harder to remember! Note to self!

OK...Not much else going on. Going to be out and about with Sam tomorrow from about 10 until about 4. That is going to be a long day. That is going to be one cranky baby! WAHHHHH!!! More later!

I drank an ENTIRE bladder buster!
Mood:  caffeinated
We started our Friday routine on a little different path this morning...We went to the local Casey's (The uh...shall I say "redneck" answer to everything...all small towns out this way have a Casey's...one stop shop...gas, doughnuts, pizza...) and I got a "Bladder Buster" (my sister's affectionate name for the 44 oz cup of whatever beverage you need at the moment). I got 44 oz of iced cofee...mmmmmmm....caffeine! So, we (my sister, my three boys and her two boys, along with me, the ever-patient driver) started out garage sale-ing! By the time we hit the habitat for humanity sale about 2 hours later I was getting pretty cranky! My bladder (after 3 kids and many years of abuse) couldn't handle things at that moment. I wasn't about to run into Walmart, even to use the bathroom! So, after a short pit stop at Wendy's (ahhh....beautiful fast food haven with a clean restroom!) I was no longer cranky and marvelled for an amazingly long time at the actual amount of liquid the human bladder can hold. It's phenomenal. Really. OK, I thought it was, but I think I was more relieved to be relieved!

OK...onto more serious stuff (since there were no amazing finds today...although I did get a brand new juicelady juicer a couple weeks ago for $10... that deserves a mention...don't ya think?!?!) Sam's eye surgery is scheduled for September 5th. This coming week is full of medical appointments in preparation for the surgery...blood work and EKG, chest x-ray, pre-surgery physical, pre-surgery visit with the eye doctor, pre-surgery visit with the pediatric anesthesiologist (hoping I can do this over the phone or the morning of surgery!)... There are not enough days in the week! I'm a little nervous about it. He will be in overnight, to make sure he has no problems with anesthesia. I almost broke out in tears today while recalling yesterday's eye doctor visit...she said his eyes will be bloody for a couple weeks...My baby's pretty blue eyes will be blue & red! I know that probably sounds silly...but what can I say?

OK...nothing else going on...I just took a benedryl for my sneezing & itchy eyes...so I have a feeling this is going to be an early night for me! Sleep sounds good...Ciao!

Mood:  spacey


Hi Everyone,

I'm making a few changes with my site and my blog, so bear with me...Please take a moment to click on the little box above (below the alien) to vote for my blog. I'd like more visitors to my blog to get more visitors to our website to get out the word about the genetic disorder my boys have. THANK YOU!!! New on my site is, when you scroll down to the very bottom, my "radio station", turn it on and take a listen to the strange yet soothing variety of music I enjoy. I am adding my main site to the links on this page, and with any luck, that will work!

Things, as always, are busy around here. A good kind of crazy, right? Sam's got his eye doctor appointment on Thursday. We've decided to go ahead with the surgery, so, as emotional as that is for me, I think its best to do it and get it out of the way while he is so little and won't remember it. After Jonah's MRI & reaction to the sedation, I have to wonder about the anesthesia...but one thing, one day at a time.

Jonah has fallen asleep (out COLD!) on the floor in the family room...I am going to go nestle him in bed. Have a great night.

*Edited due to fuzzy brain*

Mmmmmmm....Salad
Mood:  mischievious
Hi Everyone,

I'm sitting here, on my butt, nibbling on my "dinner" of an organic mache, frisee & radicchio salad with homegrown tomatoes & a sprinkling of bleu cheese. Noticably absent is some nice salad dressing...but who needs salad dressing when a splash of lemon juice will do? CRAP! Just when I thought this weight loss thing wasn't working, someone I hadn't seen all summer commented that I am losing weight. THANKS FOR NOTHING! How sick is this? We had FREE frozen custard available to us tonight (more on that later) and I had one bite...one bite....what a cryin' shame that is. I have never met a frozen custard I didn't like... which, on the flip side of things may well be why I need a weight loss program to begin with. CRAP! All this self-inspection crap is for the birds... let's be honest with ourselves...am I feeding my deep seated resentment toward...crap again...I don't even know what I hate...I really suck at this. You know what sucks even more? Exercise. The freaks of the planet that actually enjoy it... well...my muscles (which are actually becoming considerably more defined, LOL) have a few words for you. My Sciatica is SCREAMING at me, at my right leg...at anyone who will listen. I think I'm in week #4 now and well, lets just say that I'm desperately picking out the tiny chunks of bleu cheese for a tiny reminder of how good fattening food is! MMMMMMM....cheese! Seriously, I can do any food diet on the planet, actually, I didn't do well with my EXTREMELY brief stint with Atkins... I mean, yes, I enjoyed the amount of cheese I was able to eat, but my goodness...I actually like fruits and veggies very much and couldn't do it. I think it lasted 22 minutes. Anyhow...most of the time, Atkins aside, I can do just about any "diet", I'm not picky about food and I like lots of different stuff and I'm fine with cutting out some things...but it really is this exercise that is going to kill me. Ironic, huh? So...my cheese is gone...back to the radicchio. Mmmmmm! In all seriousness, other than places hurting that have not hurt in a very long time, and other than being irritated that I now HAVE to exercise, both to undo what I've done to my body and to keep it that way. Man oh man...I guess its not so bad. It hurts like blazes in the middle of it, but as soon as I'm done and my sciatica stops screaming at me...Its all good

Lots going on around here. We are gearing up for homeschooling...getting very excited about that. I found a t-shirt today that proclaims "CAUTION: Unsocialized Homeschooler" and I just love it! So funny! I'm done with my salad and I feel like I want 12 more salads.

We got another diagnosis for Jonah last week. It was a tough one to take, but I spoke with the neurologist and feel OK about it. Jonah is doing awesome and no diagnosis changes that. Jonah has bilateral periventricular leukomalacia. He was a preemie and on the ventilator, but he was not that early and had no "brain bleed", so we just really can't put our finger on a hypoxic event which may have caused this, but I am not going to play that game with myself. Jonah is on an increased dose of one of his seizure meds (Keppra) and has been doing REALLY well on this higher dose.

Sam wore his glasses for a long time tonight...he is getting very resistant to wearing them. And he pulls the patch right off of his eye. WHY on EARTH does he scream like I stole his birthday when I take it off at night but he can rip it off himself and LAUGH?!?!?! What a kid!

Daniel is doing awesome. He is such a sweet boy and we (Daniel, Jonah and I) played a board game this afternoon...Monster's Inc Life....it was fun...we played two full games!

One last thing before I get ready for bed... tonight, we went with a friend and her kiddos (Hi KIM!) to a very nice place. (Nice places are nice, aren't they?) Its called Special Night for Special Kids. It is the first night of a festival of a nearby town. It is totally free and is open to all special needs kids and their families. It was so nice. The twins ate hot dogs and the aforemantioned frozen custard (I can't BELIEVE I didn't eat more...after my frisee, I'm really wishing I felt full!) and Sam had chicken nuggets & custard...It was so refreshing to see people volunteering to make it such a special time for the kids...it was really great (nice).

OK, I think mache is very high in oxacylic acid (the "too much spinach" icky feeling on your teeth), so I need to go brush and swish. On that note, I highly recommend citrus Scope...good stuff.

Thanks so much for all of the prayers and well wishes in the last couple of weeks...Jonah is doing very well and we appreciate your support very much. This journey has been a very long one, but we are joyful to be on this journey with our boys. Childhood, parenthood...these are journeys, not destinations and we are trying very hard to enjoy each step of the journey. Thank you all again, your unconditional love of us & the boys means everything to me and I'm humbled to accept your love joyously. My boys are who they are because of God's grace and the angels we meet here on earth to guide us down the path have a very (very) special place in my heart. Cute puppies, bunnies and kittens...I know...OK, OK, I'm going to stop babbling now. Love to all!

"Puppy is not a Toy."
Mood:  hug me
Howdy Everyone...

Our little Miss Shiloh is quite the little poop machine! If I had known that at this point, bending over to clean up puppy poop would hurt so much, I think I'd have waited on getting a puppy!

Jonah hates dealing with her, unless of course, he is playing with her. Feeding her, taking her outside, cleaning up pee or poop...not in the fun zone! He asked this morning, as Shiloh was chewing on his toe (he doesn't care, he can't feel it) "Why do we only have two dogs?" I wasn't sure how to answer that and instead answered with another question..."Well, how many do you think we should have?" And then came Jonah's response: "Ten hundred and ninety-four." Oh...OK....we'll go to the shelter today to take care of that....

Daniel is awesome with the puppy. He rarely complains and understands that taking her outside teaches her to go potty outside. He likes feeding her, still doesn't quite understand that she has to go out right after she eats...but that's ok. He is so sweet with her when she goes potty outside...I've told him that when she does her thang outside, we have to tell her what a good girl she is (Jonah is still stuck on the fact that I don't tell him what a good boy he is when he pees!) and Daniel says "Good girl, Shiloh!" its very cute.

Jonah has started calling her "Shy" and its very sweet!

Shiloh is afraid of Sam. She runs away. Sam loves "his" puppy a whole lot. He wants to hold her and pick her up and carry her. Which sounds very cute, but he usually ends up choking her while he tries to carry her. Shiloh is very good, she kind of just deals with it, but if she can get away from him, she does.

Its been hot as blazes her for the past few days. Not much else to say about that...I feel like I'm going to melt. I used to enjoy the hot weather, but I think with having to keep the boys inside during this type of weather (they overheat and go into a condition we affectionately call "Vapor Lock"...it may sound comical...but vapor lock is a very bad thing...not good at ALL! And we go to the ends of the earth (especially with Jonah) to avoid vapor lock at all cost) So, I think with kind of having to stay inside or only in cool places for so long, I've just gotten away from being able to tolerate the heat. So now, I melt. We went to the splash park yesterday, there is a small zero depth water area at a local park and its (my favorite word) FREE! So, we have spent time there the past couple days. I even splashed around yesterday! OK...not much else going on...

Being very candid, I'm really struggling with the Biblical principle of forgiveness. I'd appreciate prayers to soften my heart to begin the process of learning to forgive fully. I'm tired of the baggage I'm carrying around because I am currently unable to unload the burden of what I perceive as hurts against me. I appreciate it very much.

Boy, that was a downer, eh? Ha...on a happier note...here's a photo of Shiloh! Have a great day!

Things My Boys Have Taught Me
I have spent a lot of time thinking the past few days...I've been going at a slower pace (which is NOT helping in any way to get laundry caught up) and other than the two medication-haze of last Thursday and Friday (not complaining...I got lots of sleep), I've actually been awake most of the time and missing holding the baby and picking him up when he is crying and cuddling with the twins (who are about the farthest thing from "gentle" as you could imagine), which prompted me to think of some of the things they have taught me...without further ado...

1. Toads glow when you feed them lightning bugs. Yeah, they really do...kind of a creepy~cool thing. Mostly creepy.

2. Stretch marks don't hurt. Neither do wrinkles. Or grey hair.

3. No matter how hard a peaceful mama tries, when she has boys, and they reach a certain age, EVERYTHING becomes a gun. Their forks, their toothbrushes, the baby's diaper... Nothin' I can do.

4. Screaming and being loud, just for the sake of screaming and being loud...is fun!

5. Toads are bumpy, frogs are slimy.

6. Mushrooms are gross. (I still don't think this, and I have a hunch they got this tidbit from their father, who shares the sentiment)

7. Blue + purple + yellow + green + white + black + a lot of other bottles of Mama's acrylics make a GREAT medium with which to paint a perfectly nice dresser. (and the carpet)

8. Gallon size ziplock baggies fit just right over Jonah's head...but don't come off nearly as easily. Good thing I'm pretty laid back...Only my "extra special" guy would think of this...but it had to quickly be ripped off of his head. (Aye yi yi!)

9. Ed, Edd & Eddy is Good TV.

10. Hugs and a sweet "I love you" makes it all worth it.

11. Never tell your 5 year old "Don't put dishwashing detergent in the dishwasher." Because they'll do it. (Good thing I saw it before they ran it!)

12. Sometimes the sweetest thing you can hear is "Thank you, Mama!" (made even sweeter by little speech impediments...VERY sweet: Kank You and TAHNK EEWWWW)

13. Intent does count for something...even though its made a bigger mess for me to clean up...they WANTED to help!

14. Roller skates + Jonah + being at the top of the downhill sloping driveway = something not good. (although he doesn't feel pain...I hurt!)

15. A "SNAP" when a child jumps off the back of a couch is not a good thing...even if he doesn't feel pain. (It means a broken foot!)

OK...I'm sure there are plenty more...those are the ones I could think of off the top of my head...Life is good. I'm going to go cuddle with my boys...even if they jump on me...its worth it!

OHHHHH My Aching BELLY!
Mood:  d'oh
Howdy All,

Now that I can sit upright at the computer for more than 2 minutes....


We went camping the day after Fourth of July, figured we'd avoid the crowds. It went well, we (the twins, my dad and I) took Sam with us and Jon came later that afternoon to eat dinner with us and take Sam home (camping with Sam is comparable to getting bamboo shoved under your fingernails slowly). Everything went nicely until the middle of the night...I was SO uncomfortable, having terrible upper abdominal pain. I've had an ulcer in the past, but this pain was different. So, I continued to moan and be uncomfortable until everyone else got up and long story short, I definitely decided that getting home was a good thing. So, Dad & the boys packed up camp and we headed home. A short way into the drive I bailed on the idea of going home and directed the "captain" (Dad was driving, I don't think I could have done quite as well driving, although he normally drives like a crazy old man, I was in no position to complain!) to take me directly to the Emergency Room. Got to the ER, the doctor took a look at me and, angel of mercy that he is, gave me some very nice pharmaceutical intervention to deal with my pain. I don't remember too much after my medication intervention began (LOL...blissfully!), but I remember snippets including "you have to stay in the hospital" and "you need surgery"...(OK, OK...whatever). I had surgery the following morning (to remove my extremely full of stones and good for nothing gallbladder) and went home that night. So, surgery was on the 6th and today is the...oh heck...maybe the 11th? I'm feeling MUCH MUCH better, I've only taken Ibuprofen and Tylenol here at home and have done OK...my stomach is so sensitive to medications that I'd just as soon deal with a little more pain than deal with throwing up because of medication (which would cause a great deal more pain). I'm up and walking around. Got a bunch of stuff ready for Freecycle yesterday, did some laundry yesterday...Thinking I'm just about ready to start Sam's cloth dipes today...I've been hesitant because I have such a time bending over, but I should be able to today! So I'm VERY excited to start with those...I figure...what is one more load of laundry every few days? OK...That's it for now...The boys are doing well...there's not even anything to add onto that...they are doing well (YAY!!!) More later!

Tilt a whirl, funnel cake, Cloth Diapering Crazy Day!
Mood:  loud
Howdy All!!!

Crazy Day yesterday! I got in my shipment of Sam's AIO (all in one) cloth diapers...I was SO excited to start using them...So, I decided I was going to start yesterday morning...What a disaster! LOL...he completely soaked through at church and that started Mama down a path of crankiness that the 95* wheather & 5 rides on the tilt a whirl & Jonah in vapor lock wouldn't be able to bring me out of! I felt like running away! But, a good night's sleep, diapers in the washer (I soaked them in HOT water last night, they felt "stiff", so they needed to be "broken in", I'm sure...this is gonna work...

I am new to cloth diapering. Part of me has always wanted to CD, I was just very put off by the extra laundry (WHO on earth would want to add to their laundry?!?!) But, knowing full well that I have at least another 1 1/2 - 2 years of diapering left in my mama career, its not too late. Cloth diapering is much more economical (I am not even going to calculate the amount of money I've (pun intentionally not added) errrr....spent in the last 6 years on disposables). Eco-disposables are expensive, there are cheaper options. The laundry, at this point in my life, doesn't scare me. I'd just like to stop buying diapers! SO...to that end, I just kind of decided one day that enough was enough and did a barter for the dipes...I got a very good deal on a lot of new dipes, in addition to 2 gently used ones... I spent $20 in cash in addition to many items that I was bartering for 12 dipes. These dipes, if bought outright with cash, would have cost me $180 (plus tax & shipping), so always the bargain hunter, I had to work it into the budget, but that $20 was well spent. (Plus, I got to pass along some great items that needed new homes!) So, once these are out of the dryer, we can try this again! I'm sure this washing/soaking process will solve the problem...these were new dipes and they were "stiff", so I'm sure the fabric needed to be relaxed...as my litte "wee" (sorry, I had to" one's wetness just came out the sides, it didn't absorb at all...So, hopefully problem solved.

Most of the time, I generally let things slide. If it's something important, I will take a stand... but usually, as long as no one is getting injured or damaged in any way...I let things go as long as its not too annoying to my spirit. Yesterday, I just couldn't let anything go. That bothers me a whole lot...I deeply dislike holding onto "stuff" that just hangs out in my heart & head and just takes up space. It's something I have committed to working on and just wanted to throw it out there... if we allow "things" to cloud our emotions & actions, we are slaves to our own negativity. I became aware of this in myself a long time ago, but hadn't done anything to change it. I made the decision to change it a while back and have been making baby steps in order to change these negative behaviors. We feel how we feel...we can't change that. But, we can control how we react to our feelings. Just putting it out there. If someone does something that angers me...I can choose to hold onto that anger until it eats me alive...speaking from experience...I've done that SO many times I've lost count, and it's rotten. Why on earth, I finally concluded, would I allow someone's stupidity (ignorance, insensitivity, whatever) cloud my actions? It was a revelation, to be certain, but changing our actions is difficult. So, I am continuing to take baby steps in this area of my life, hoping to improve on this. It hurts only me & my family when I react to others in this way...My intention is clearly not intentional to hurt my family (if I get worked up and aggitated, the kids can feel it, my husband can feel it, friends can sense tension) and I don't intend to hurt myself...but these are the end results and why I've decided that while no person is an island, we can still make the choice to feel our own emotions and react to the actions of others in a way that is healthy for us and beneficial to those closest to us.

Meet Daniel's Tapeworm, George...
Mood:  mischievious
Howdy Everyone...

I'm convinced Daniel has a tapeworm...we've begun calling him George. This child eats SOOOO much, I don't know where on earth he puts it all. So, I think its George.

Not much new going on here... Not sure when I last posted, Sam was in the hospital a couple weeks ago, pneumonia again. He's all better now. Sam turned two yesterday...what a sweetie he is!!! I will have to post a new photo soon. He's getting so big! He is starting to say a few words...nothing earth shattering (Jonah's first word at around 24 months was "moustache"), but he is saying quite a few words...Mama (alternatively "Mommeeeeee"), Daddeeee, Nana (Jonah), Dada (Danny), EEEEE (eat), mo (more and milk and elmo...boy oh boy does he get mad if I think he wants milk but he really wants elmo!)...and a few others. He has a very "stubborn" personality, he knows what he wants and when he wants it.

Jonah's still having some problems with his lower dose of B6. He is having some behavioral issues, just a lot of yelling & seems very disorganized and gets flustered very easily. This is much better when he's on the full dose that he was on, but with the neuropathy in his feet, the neurologist isn't comfortable raising the dose any higher. I'm *trying* very hard to listen to the doctors and not just be maverick mama with the B6...hard to do, but I don't want to make a decision that will impact Jonah for the rest of his life...so I'm putting my trust in his docs...not that I don't generally trust them, but I have that mama instinct to END the seizures and the very human quality that I'm tired of this kid yelling at me (!!!!) I can tell that he can't help it, I can see he's frustrated... but things are OK...we're used to it and he isn't doing horribly...so he's maintaining.

Alrighty...its getting late and the boys are outside catching fireflies, gotta go get them inside...I think I'm gonna get yelled at. And I will probably have to feed George again....aye yi yi!

Hi Everyone,

Things are going OK here. I feel very much at peace about our decision to homeschool and homestead...I feel like this is a good thing for our family and am trying very very hard to not make this happen in "my" time. We've not come to where we are in our time... I need to let things be as they are and as they should be. Its a God thing... I need to just let it be and allow things to happen in their own time. Tough lesson to live!

Jonah had a couple minor injuries in the last week & a half. First a minor finger injury, had to go to urgent care for that one, there was something stuck in his thumb. Then we went back for a re-check and he had an infection in his knee....so he's on antibiotics, almost done with them now. In the midst of Jonah's little drama, Sam came down with a very high fever and those special seizures that happen when we can't get his fever down... So ER one night (ugh...ALLLLLL night) and doctor appointment the following day (same day that Jonah had his knee re-check) and Sam ended up getting admitted to the hospital. He had pneumonia... my kids forget to read the book...ITS JUNE!!! No more pneumonia! Yeah...that might work.

Other than these little road blocks...things are good.

Sam is still sleeping...I need to further investigate that...I should say "Sam is still quiet." He has learned to escape from his crib... so opening that door could be a bad thing for me. More later!

A Big Decision
Mood:  happy
Even though it is still spring...SUMMER IS HERE! Its gorgeous outside, the rain has stopped for now, the sun is shining, the weather is warm! YAY!!!

After an exhausting several weeks, a huge fight with the boys' school for their education plan meetings, and another fight because the principal wanted to separate the twins and remove them from their classmates who are continuing on with the same teacher next year...I fought, they didn't change their minds and long story short...We are beginning homeschooling! The boys' last day of school is Tuesday, but they're not going, so today was their last day! We are officially "that weird Christian homeschooling family"!!! And I couldn't be happier! I'm a bit concerned about how I am going to teach the boys with Hurricaine Sam running around, but I think that will be short term and it will improve as he gets a bit older. Sam will go to early childhood, as the twins did, for his therapies, and I may even have him go to kindergarten as well, but beyond that, and probably even for kindergarten, he will be with us.

OK, that's a pretty big step...right? Well, here's an even crazier one...we are buying a small farm and are going to have animals and stuff! Can you stand it? The twins said they want a horse...LOL, I'm thinking some chickens and a few goats...and of course a couple of really big dogs! LOL I'm so excited...I hope this doesn't mean my mother in law won't visit...She thinks I'm more than a little off anyhow so this should play out well. I love her despite what she may think, but she's not really an "outdoorsy" kind of a girl! Now, that said...I need my creature comforts as well, so this isn't going to be difficult farm living by any stretch of the imagination...I am praying and hoping that we find the right house, with the right outbuildings/pasture/acreage combo for the right price, in the right area...So...that's it...pretty crazy but I am so excited about this!!! OK...that's it for now.

HOWDY
Mood:  happy
Hi Everyone,

Long time no update...what a busy world I live in!

Jonah has been struggling with behavior/seizure issues because we lowered his Vitamin B6 about 4 weeks ago due to neuropathy. His nerve conduction tests came back showing neuropathy and we are trying to avoid this, but he is struggling with the lowered dose. We have gone up some, per the neurologist, but I can tell he needs more. Its very sad for him...I can tell he can't help the things he's doing (yelling a lot, talking back (but doing so in a very non-sensical way, a lot of sensory seeking behaviors, unable to focus on anything, everything is moving a mile a minute) but they are driving me crazy! I'm trying to just be pretty laid back about it (I keep telling myself "this too shall pass", but I've been waiting for a really long time for it to pass!), but I'm getting really tired of being yelled at...by Jonah and by the baby as well (Yelling by the children, which used to be a very uncommon thing is now quite common...thank you Keppra...seizure med Jonah and Sam started in February (I think...my brain hurts)) So, Sam is actually yelling less, we decreased his dose in April and he is doing quite well with his seizures (I'd say he has pretty good control right now...not too bad!). His development is still delayed...but we are working on getting his therapies going shortly...I tried to put them off, I know the type of things to be doing, but he needs more than what I have done...and that's ok, as always, if that's what needs to be done...that's what we're going to do!

I've got a bit of buyer's remorse! Ha...I bought a bike trailer this weekend, I got a great deal on it, it is like new, the tires are even in new condition. We've been looking for one for a year that was a good price and I got it for $25 and feel guilty for spending the money...I'm such a nut! I guess the main "problem" is that I (duh!) have three children and the trailer holds two....Hmmmmm Oh well...I guess things are not too bad if I feel bad about something that silly!

I got a great book today, its called "Back to Basics" and its all about traditional American skills...LOL...you know, cuz I'm such a "farmgirl"... one day my dream is still to homestead and this book, even though I just started looking at it, has been a fun "escape"...

All right. I have to get up early again tomorrow. Only a few more days of school left and then my only alarm clock will be my sweet wee one yelling "MAMA" ad nauseum....which he usually does now before the alarm clock goes off anyhow! I'm going to go read about raising chickens...and cleaning rabbits...OK, some of that isn't my cup of peppermint tea (with a touch of honey), but Can you imagine those manly women from who we decended who actually did that kind of stuff...wild. If laura ingalls could do it...darn it...so can I... I don't know if Laura ingalls wilder ever cleaned a rabbit or not, but I bet she knew how....aye yi yi... Its very obviously time for me to go to sleep and not time to read a book!

I can Add to the list of gross things my Boys have taught me!
Mood:  bright
Happy Easter Everyone!

I asked Jonah what he learned at church last night and he simply said "Jesus is alive." JESUS IS ALIVE!!! Simple words out of the mouth of a child but such a profound statement. So, Happy Easter, Again, enjoy the day and enjoy its wonderful meaning!


OK, this past week has been uh...busy, I suppose is a good word! I learned another gross thing because I have boys....(because I KNOW if I had a little girl (LOL) she would never have gotten into this situation!)...rat bites don't hurt. (AYE YI YI!) You can all guess with about 100% accuracy which child this was (Jonah, for those of you who aren't familiar enough with us yet)...so I can add that to "When you feed a toad a lightning bug, it glows"....Still reminding myself that I just didn't KNOW that I wanted boys! LOL....

We had the boys' IEP (special education) meetings this past week. Boy oh BOY am I glad that's over! I've been stressing for three months over this... Jonah will be in a regular ed classroom and he will have a one on one aide with him for most of the day. He won't have the aide for science or social studies, but for the rest of the day, he will have extra help. This person will be watching for seizures as well, watching Jonah during recess (Jonah is extremely sensory seeking, so he's a "jumper", added to the fact that Jonah doesn't feel pain normally (hence the rat bite not hurting... oh, and I should probably add that it was a pet rat, Jon and the boys were volunteering at the humane society), so Jonah needs someone keeping an eye on him so he doesn't break his other foot!)

OK...in other news, Sam's alkaline phosphatase is going down. (Praise GOD!) Its origin is NOT bone, so there is no bone malignancy! We will repeat it again in a few weeks to make sure it is still going down. Sam had his occupational therapy and speech re-evaluations this past week. He's now at least 30% delayed globally...so we will be starting therapies with him shortly. He sure does say "mama" very clearly. Ha....in fact...he is waking up and yelling "MAMA" right now, so I will close for now....there's a Sammy waiting for me. Have a great day!

Note to Self...
Mood:  surprised
Note to self...Don't EVER Say the following words out loud (EVEN IF YOU'RE THINKING IT)..."Things are pretty quiet around here."!

You'll see that my last blog entry a full month ago, says those words...AYE YI YI! In the past month, Jonah is back on his B6 (after over 4 weeks off of it and a somewhat surprising return of his seizures!), having some fun behaviors, Sam hasn't stopped screaming at me for a couple months now (I'm beginning to think its a side effect of the Keppra?) and about a month ago, we were dilating Sam's eyes at home, as he, with his seizures, can't have the regular eye drops they use in the doctors office, and he had a systemic reaction to the atropine eyedrops. Boy, that was "fun"...but it passed. But not without some skill loss from all the seizures (He is walking better now, still kind of clumsy, and he is beginning to feed himself again, I was loving the regression and him just playing with his food...ugh) So, little did I know, these things were actually SMALL... He was admitted to the hospital because of the anticholinergic toxicity syndrome (toxidrome) and by the next morning, he was ready to be discharged. We were just about ready to go home when our world came crashing down around us. The doctor (the kids' pediatrician is not on staff at our closest hospital, and we had to go to the closest because Sam was a very sick little boy at that time) came back in to Sam's room and told me that we need to have a bone scan done on Sam right away because one of his blood tests came back critically high and the only thing it can be is a bone malignancy. (Can you hear the world crashing?) I kept my cool and then called the pediatrician, had the nurse fax over results and we went straight from the hospital to the lab to get blood work done. Due to an unbelievable comedy of errors, to this date, we still do not have the results of the test we need. We went in just this morning to have the correct test done (after 4 tries) and I kept telling them today that "We are here for a repeat alkaline phosphatase and we need the isoenzyme defractionation done with that!" Yes...I told everyone who would listen...LOL...NEED it done. I'm pulling my hair out...but I am doing better now. Sam seems fine, other than the intolerable screaming at me all the time (which started getting bad about a week after he started on his regular dose of the Keppra). His alkaline phosphatase was, to begin with, over 7,300. Upper limits of normal is about 350, and an elevation up to around 400 could be normal in a kid going through a growth spurt. His alk phos is going down, just not nearly fast enough for my liking! So, in my simple thinking, if this were a malignancy, it would not be going down on its own, without treatment. His liver enzymes have remained normal, so we really need the defractionation to find out if its coming from his bones or intestines...an after effect of having had rotavirus several days before the medication reaction. So...we shall see. The lab people assured me that the correct test was being done and now, with any luck from the lab gods, we will have results in a few days.

OK, so that's what's been going on in the last month. Not much else...definitely NOT been quiet. More later!

Dare I say it...Things are "Quiet"!!!
Mood:  smelly
Howdy All,

I can't say this too loudly, or the noise gnomes will hear...so listen carefully! Things are going well here! Even with three kids plus mama with a bout of the stomach flu...things are quiet. Can you stand it?!?!? Pretty Cool, huh? Granted, in 19 minutes, all three boys will be out of bed and I will have to get the twins ready for school and breakfast and fight with Jonah to put socks on and do speech practice and get something out for dinner, once I figure out what that's going to be, and laundry (and more laundry) and I have to do labels today for my lotions/soaps/salts...they are not getting done on their own, vacuum downstairs, get freecycling stuff on the board, make a batch of soap, a couple batches of lotion and a batch or two of bath salts. And that is all before noon when the twins get home from school!

OK, I did something entirely stupid the other day. My hair was pretty much all one length (almost shoulder length) and for SOME reason (I'm not entirely sure why!) I gave myself bangs the other day. I haven't worn bangs since 1989 and they REALLY highlight all the grey hair that is popping up...not sure what to do about this...I look really awful in bangs (and grey hair...but God saw to that (and I EARNED EVERY ONE OF THEM!) so I can live with that one...but the bangs thing...this is a problem. I like having hair problems...it means that I am not freaking out about anything else!

Jonah, on day #12 with no seizure meds...WOW...the kid is more clear, more articulate, he can sit for 10 minutes to do homework, he is speaking more clearly, he is calmer...and this is not just me noticing this...my mom, my sister... Find it hard to believe actually, but he's doing awesome! The teacher called on Friday, and even though Jonah was home sick on Friday, I wrote her a short book full of questions. She and the classroom aide hadn't seen ONE (not ONE!!!) staring episode last week! (down from sometimes 5 or more per day!). Jonah asked what the number was on his shirt and I told him and he actually remembered it several hours later...now that doesn't seem like much, but Jonah can be sitting at the dinner table, with his plate and cup in front of him, fork in his hand, and forget what he's doing! So remembering a number a few hours out is a really big deal. (He doesn't recognize numbers on his own, unless its 1-11, because 11 is his favorite number)

OK, off to wake up the troops. I wonder if we are going to get snow today...I should check the weather...it looks icky outside...that would make a good day perfect! (LOL, I've only been awake for an hour...but its already a good day!) Ciao! Jen

Back From the Hospital, Waiting to Exhale
Mood:  not sure
Howdy All!

We got back from the hospital on Thursday afternoon. Jonah was AWESOME and was getting "itchy" to get out of there by Tuesday (we went in on Monday), but he did awesome! He has now (with two weekends, this past one being a four day weekend) been out of school for 10 days and I can't help but think I am going to have an impossible time waking him up at 7 tomorrow morning. (AYE YI YI!) The good news is that he has exhausted himself out completely (he finally fell asleep around 3 a.m. last night!) and is now sound asleep on the couch! So, perhaps he will get enough sleep and won't be intolerable tomorrow morning!

I'm waiting for the doctor to call me back in regards to the EEG. We hope to figure out what is going on with some certainty. The doctor did say that "we" might just have to accept that Jonah is developmentally delayed and that he is not normal. (OUCH!!!) I don't see it. I see Jonah as, and treat him as, a normal kid. We shall see....

But for tomorrow...he's back to school! More later! Jen