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Thursday, 5 June 2008
I Know.....I Know....
I know....I know.... I get it all the time. I KNOW I haven't updated in months. Do I have an excuse? Well...yeah, about a zillion... , but are they very good ones? No, not so much! HA...at least I'm honest.
So, My new year's resolution (I KNOW its June!) is to keep
everyone updated more better. (I KNOW that's bad
We are livin' la vida loca on our new mini-farm. LOVING
country life, the fresh air, wide open spaces...it has been an
amazing few months and I feel like we are where we
belong! So far, the garden is growing (I've got arrugula -
Jonah calls it "arruglia", buttercrunch lettuce, basil, stevia,
strawberries, chives and onions available to eat....corn,
tomatoes, eggplant, zucchini, spinach, rosemary, cilantro, a
bunch of hot peppers and winter squash are planted &
coming up), the chickens (and duck and turkey) are getting
big, the boys are keeping me BEYOND busy...more on that
in a moment! We are enjoying being out here, it is much
easier to be frugal when we are so far away from stores. I
am baking the vast majority of our bread (biscuits, pizza
dough, etc.), hot dog & burger buns are still being bought...
LOL, I've told DH I'm not taking part in making anything
healthful to put crap on...(Ask me how I really feel!),
Cooking from scratch has been going on for a long time,
but its been taken to a new level and I'm enjoying it very
much. With the deep freeze, its now easy to stock up and
just not have to go into town too often. The country has
been very good to my spirit. I love sitting on the deck and
just listen to the sounds, the birds, the wind, the tractors...
Now for my excuses: Its been a very busy time for us,
medically speaking, with the boys. They were all diagnosed
with a bleeding disorder last summer/fall. In February, we
had a peripheral (in his arm) semi-permanent IV line (PICC
Line) placed in Jonah's arm so he could do a trial of factor
(blood factor, replacing the missing parts and parts of his
blood that don't work properly) He has had wonderful
success with this medication, and he now receives it three
times per week. He's been hospitalized twice in the last 2
months with infections in his PICC Line/blood and was
released just this past Sunday from the hospital. He had
surgery last Friday (May 30th) to place an AV Fistula in his
arm. This fistula will allow us to have easy IV access to
give him his factor without the risk of infection of the PICC
Lines. He is a rock star...handling post - op pain very well
(well...he doesn't really feel pain anyhow....but he's still a
trooper!). So, the day we get home from the hospital,
Sam's not feeling so hot. So Sam & Jonah get a doctor
appointment on Monday morning...Jonah's insicion looks
great and Sam has strep/tonsilitis (again....4th or 5th time
in 3 months), so HE has to have his tonsils out! I just
laughed...what else can I do? He was tested for Mono
yesterday, fortunately (I guess), it was negative (but if it
were Mono, I could have stopped with the antibiotics and
the tonsilectomy may not have been necessary....so it was
a bittersweet negative), so he is just very cranky and we
have to go in tomorrow (which will be day #5 on this
antibiotic with no improvement) for a 'vitamin R' shot
(rocephin - antibiotic)......hate the thought of shots... hate
him being sick... I'm very much exhausted by all of the
medical stuff, I feel like I am constantly writing letters, on
the phone, waiting for return phone calls...giving meds,
taking temps...all of the medication, even the stuff as
simple as giving Tylenol for fevers, is so counter-intuitive
for me...our bodies use fevers to FIGHT bad things...why do
we try to lower a fever? But, alas...fevers = seizures in my
boys and seizures beget seizures and are just no good. I
would never say I feel cheated because I think my boys are
awesome, but I definitely wish they didn't have to go
through so much stuff...most kids don't need to endure
this. But I know that many endure much much more and
am grateful for who they are and the challenges they have
overcome. They don't view these things as barriers, they
are just temporary road blocks, mini-obstacles to find a
way around....I'm glad they have good attitudes (for the
most part, LOL, Sam isn't such an agreeable kid the past
few days!) and they just work so hard to do the things that
most people take for granted. Pictures to come...I can't
figure out how to make my camera take smaller pics and
can't shrink 'em...but darn it...I'll figure it out one day!
Thanks to all for the support, prayers, thoughts, cards &
letters, we appreciate you all so very much. This has been
an amazing journey and we have so much more to
accomplish and see on our path, we are so happy that you
are with us!
Monday, 25 June 2007
Its been a while...again...
Well, I'm not entirely sure what to say... I don't really even remember last time I updated anyone on what's been going on with us.
After an absolutely horrific fall/winter/early spring with one illness & injury on top of the next (for Sam), I'm very pleased to announce that the boys are doing wonderfully (except for a bizare ant attack today...Daniel & Jonah have both been "Benedryl-ed" and when I asked Jonah why on earth he sat outside and let ants bother him, bite him, etc... He said "I was trying to be one with nature."...OK, well, we already know he's MY kid, but, well...Ha...I've never sat & let bugs eat me alive! We love Jonah. He's cute. And he definitely keeps us laughing. So, yeah...kiddos doing awesome!
Sam just had his THIRD (!!!!) birthday... a little stunned by that...not entirely sure why. I'm so happy that he's not 2 anymore...although... well, I'm much better in general with children once they are able to communicate their needs a little more articulately than this: "Mommy. Mommy. Mommy. Mommy. MOMMY" (of course, in between each "Mommy" is my "yes, Sam?" or "What do you need?" or "Huh?" or "WHAT NOW?" or something like that...but yeah...he is beginning to really be able to let us know what he needs...although most of the time he says things like (his longest sentence to date) "BRING THAT BACK TO ME RIGHT NOW!!!!" He's cute.
We are in full swing...packing up our stuff... Looking forward to country living. We've found our "new" home...offer is in, contract signed... portable storage unit is coming on Friday. Getting Sam ready for school in a new area, its exciting, but I can not stand the thought of putting him on a bus...(For those of you who don't know, children with special needs receive therapy services from birth to age three and at age three, the local school district takes over for therapies. For ages 3 & 4, the child has to go to early childhood to get those therapies, then at age 5 (kindergarten), we can begin to homeschool or let him continue with kindergarten (to continue therapies) and then homeschool beginning in 1st grade (which is what we did with the twins) but at age 5 & up we can get therapies from the school while still homeschooling. This is not an option at age 3...) So, I don't know how well he's going to do with getting on a bus...ha...we shall see.
OK, that's about all that's going on...LOL, as always, there is generally a lot going on, all mashed into one big chaotic, crazy life! Good stuff. My favorite is preparing for our garage sale. LOL...Desperately needing to purge and since we've not yet received the storage unit, its just like boxes on top of boxes right now... Pricing is always fun...I've started to refer to this as my 25 cent garage sale...because I want it all to sell and not have to take any of it with us, so I'm selling cheap!
Jonah & Sam have hematology appointments on July 16. Sam has his post-op hearing test on the 18. We know he is hearing very well now...he is so much louder than he was before surgery! His conductive hearing loss was so pronounced...the surgery helped a lot, his speech has increased by leaps and bounds, physically, he's strong as an ox...and well, more than just a little bit spoiled. And a tiny bit of a mama's boy. That's OK. I'll keep on holding him for as long as he'll let me!
Updates to follow...LOL
Wednesday, 16 May 2007
Sam's surgery went well. He ended up just having the ear tubes placed. They did a bronchoscopy and found that he does have nodules in his throat, but did not remove them. Sam will need to follow up with a hematologist (blood doctor) because one of his blood factors (Factor VIII) was low.
We are in need of prayer right now. I had a health problem (severe allergic reaction) on Saturday and am starting to feel better, but between the steroids and antihistamines, I'm pretty much just a cranky, tired mess. Jonah is continuing to have many seizures...its been a while since he's been like this so this has me very upset, his seizures had been so well controlled and now he says he feels seizure-y but I don't know what's seizures, what's med side effects or what anything else is. I'm going to call the doctor again today, I don't want to have him hospitalized for monitoring (Today is the twins' birthday!) but am kind of at a loss for what else to do, he's feeling miserable and I can't help him.
There is also another issue that I am in need of prayer for. I am struggling very much with forgiving someone. This is a person who was supposed to be a friend and did something a friend would never do and has made a very difficult situation for our family. I'm trying to forgive this person and not hold anger but, alas, I am only human and I know full well that my trying simply isn't enough. I'm emotionally and physically exhausted and this was one additional thing that I just could have done without.
Sorry that this isn't a more upbeat post, I am normally much more chipper than how I'm feeling today. Thanks for your prayers and thoughts. They mean the world to me.
Tuesday, 17 April 2007
OK, so its been a while...I've been busy! LOL... Several of you have asked me if I've fallen off the face of the earth and other similar comments...so I thought I should probably update...HA...a blog, update...go figure!
The good news is is that there is not a whole lot to update on! Things are good. We've found a WONDERFUL house!!! We've been "kind of looking" for close to a year, "kind of looking seriously" for several months and we kind of changed locations (we were looking a bit south and we switched to looking north and west a bit) and on our first trip out there we saw 3 houses and 2 of them were wonderful and although the 1st one we saw was about 1,500 sq. feet bigger (yeah, seriously large houses), there seemed to be a mildew/mold issue in the basement (walkout basement)...so that one was about $40,000 more expensive anyhow....so "tie" goes to the cheaper (and still 3,700 sq. foot "smaller") house!!! And its not a farm, but it is on 1.25 acres so there is plenty of room for a garden and SOOO much room for the boys to run! And space....I'm in heaven! So now we are trying to work out the "annoying little details"...you know, finding a job, waiting for Jon's commission, LOL...The fact that we saw two similar houses in one day is promising to me that even if this house sells (I swear to Mickey Mouse I'm gonna kill anyone else who makes an offer on "my" house!), there are other similar ones out there in that area. So, lots of space, complete with an office for Jon (no more PILES of paper on my kitchen table!!!!!!!!!) a homeschooling room and rooms I don't even have an idea what we're gonna do with yet... LOL...THAT tells you how much space there is... I have extra rooms! WOO HOO! So, no chickens allowed, and there are neighbors, but really nice big lot (and almost all of the land is in back, there is not much of a front yard). OK...so that is something that is up and coming.
What else?....Oh, Sam's scheduled for Surgery on May 8th. It was scheduled for the 1st...but making the neurotic mother wait another week is no problem, its not like she's stressing about it or anything...ugh! He is going in for an ENT overhaul. He is having tubes put in his ears. Joy... but the infection that he currently has in his left ear (for 8 weeks now) has lived through homeopathy, chiropractic, more garlic than you care to imagine, FOUR courses of THREE DIFFERENT antibiotics, allergy meds and going gluten free & casein free for a while...Sam's happy to have his milk back. LOL... SO, tubes...no biggie, right? OK, how about Tubes, plus removal of throat nodules? The doctor (Who is WONDERFUL!!!!!!!! A referral from our neurologist) suspected nodules immediately (we were there for those too, his speech therapist suspected them) as well as (but wait...there's MORE!) adenoids out for sure & possibly (probably) tonsils out. He will be in the hospital hopefully just overnight...So I guess that's a big deal (LOL, you KNOW when I say there's not much going on that there is still SOME stuff going on!)
I do think that's it though. Things are going well with the boys. They are starting to read and its so cool! YES, JONAH TOO!!!! Right now, Daniel is doing some "sounding out" and coupled with his sight/recognition words (not my thing...but he does know some) and is doing awesome... Jonah is mostly doing sight words right now, but its a start. Jonah is very resistant to homeschooling and when we move, and have the space (which has been my biggest hurdle!), I think he will enjoy it more. I think I've picked out a curriculum for next year... This year has been interesting, getting our feet wet, but its definitely been an adjustment for them as well as me. Its all good...I think with a little bit more of a rigid curriculum, Jonah will be right in line...he is doing awesome, but his motivation remains playing and getting to watch a favorite cartoon. And that's ok with me...he is who he is...I'm not about to change him.
OK, I hear Sam getting into something...At least he's out of his "I'm gonna open the milk and dump it in the garbage can." phase...that was fun. My garbage can has never been cleaner! I was washing it out every day! AHHHHHH! I love 2 year olds. I love two year olds. I love MY two year old...
Friday, 19 January 2007
Coming To Terms with Something...
My husband (kind of nerdy...not geeky. He's like a wannabe jock but kind of smart, he likes to play (basketball & another "sport" to be announced in just a moment) & is pretty good, LOL, you know, in the 35+ mens league (LOL) but the nerdy (well, maybe it is geeky?) thing is that he analyzes all the guys' (on the team, he's the "captain", put together this basketball team, did a couple softball leagues over the summer) anyhow...he like analyzes how many points/rebounds/I can't even tell you what else because I can't even stand to be in a gym when basketball is being played (squeaky shoes...EEK!) OK, so I can't even believe I'm admitting this... OK, here goes...he's been emailing with a local guy (I can't believe it that there is more than one of my husband anywhere, I feel like starting a support group) and is starting a.... ugh!!! wiffleball league....THERE, I said it... so, church wiffleball league...he just got done telling me that the church is excited about it. (Duh...for getting a bunch of 30+ year old men into their gym for wiffleball? I'd think...again, just me, that I would NOT want those people playing in my gym) OK... I don't even know what else to say...LOL... I'm married to a basketball, softball (which are kind of normal-ish sports for a guy to play, I think) and WIFFLE BALL player...that, my friends...is just not right. I'm kind of, in an oddly curious way, thinking that I should probably go check out the "guys" who are playing...I should probably, for the sake of my own sanity, find out if these are nerdier (geekier?) guys that I know I'm married to. If you are a nerd (geek?), do you know it? Because, I'm thinking, maybe they just don't know...I can't be the one to break it to them...but I'd think holding a plastic bat & hitting a ball with holes in it in a church gym on a Saturday night... you'd HAVE to know...right?
I used to be kind of geeky...I never had to study and got good grades in school...but that left me wide open to have fun...so book-geeky, but not a social geek...so I'm having a little issue with this. LOL...I just don't know if I can go and watch a bunch of grown men take wiffleball seriously... Is there an "h" in there "whiffleball"? I don't even know...I never really thought it was a sport. This is, however, a "sport" that I will watch on the occasional chance that I might have to watch a game... in general, I don't go to his games (softball or basketball) because I have very poor vision and NO depth perception, so I am TERRIFIED of the ball...any ball...but I am NOT afraid of a wiffleball. If bowling was my thing...I wouldn't be afraid of that either...unless someone gets really angry, I've never seen a wayward-thrown bowling ball...although it would hurt if it were thrown... but not so much the wiffleball. OK... coming to terms with marrying into nerd-dom (geekdom?)....
Wednesday, 17 January 2007
Uh...Better Late Than Never...
Mood: hug me
OK...LOTS going on, so I'm gonna do this is rapid fire fashion...no time for details, it is 12:56 a.m. and if I play my cards right, I can still get 5 hours of sleep tonight. Jonah JUST fell asleep & I thought for sure this was going to be another VERY late night (he was still awake at 5:30 this morning) OK...
Christmas...good. Daddy home from work...OK. Grandma off of work for a while...OK.... Auntie Boo home...OK (I had a lot of "itchy" and "twitchy" moments with so many people around...but survived) Uh, lets see...no snow on Christmas...that was a bummer, but at least I didn't have to shovel the snow. Two days after Christmas...Sam starts screaming after playing football outside with Daddy, brothers & puppy. (this will become important later) Two days later...Idiot me thinks "gosh...he sure is having a hard time teething"...it must really suck to have a stupid mother sometimes...I had called the doc's office & warned them of low grade fever & generally not doing well & that pesky screaming at me thing... we agreed to wait two days...& bring him in if he still had fever. Two more days pass & he does have fever (still low grade) and we took him in & he's fine & feathered..."nothing" wrong...ears, good, throat fine...OKEY DOKEY...Pick up more teething tablets. and tylenol. and motrin. and benedryl because all these people are making me itch. OK...that night we end up taking Sam to the ER (so this is the Saturday of New Year's weekend... remember, he's one of my children...so this is the norm...we always have to go to the ER when there isn't a doctors office on the planet open) Well, long story short...broken arm (DUH! That's why he's screaming...best we can figure out, puppy jumped on him & he fell back & that's why he was screaming when he came inside...note to everyone...didn't happen on my watch.) OK...so we have to wait until TUESDAY to see an ortho...made me CRAZY...but our ortho is wonderful & they got us in on Tuesday & it was broken in such a way that it couldn't be casted...joy of joys...this kid is like freaking Houdini! Sling & 4 ace wraps can't keep that arm down. OK...so that's healing & oh...fast forward a week & a half or so he starts not acting well... not drinking anything, not eating. On day # 2 of no meds down, I got him into the ped & he started having seizures & so she sent us to the ER, we thought for sure he had pneumonia, but no...RSV... ugh...that was a bummer. RSV should be a cold to a 2 1/2 year old...so that was a setback for me... And a very good reminder that even little things can make my guys very ill. OK, admitted to the hospital, bunch of fluids, THREE rescue doses of meds because of so many seizures (!!!!) and he actually got to go home the next afternoon. That was last week and today is the first day that he really ate anything (with gusto!) and is now drinking well & taking all meds...back to our regularly scheduled life! OK, that was it in a nutshell. Ped appointment tomorrow after developmental therapy. Ortho appt Thursday after speech therapy. Connor & Nolan visiting this week, Daniel & Jonah are VERY excited. That's it... adios, goodnight, I still can get to bed before 1:30!!!
Friday, 22 December 2006
Its Beginning To Feel a lot like Christmas...
I should probably not say this "out loud", but the boys are all healthy. Of course, this is relatively speaking, but no ear infections, sore throats, tummyaches, major seizures, stuffy noses... nothing. Pretty cool, eh?
OK, I went to the dentist today...A not yet 30 year old dentist (!!!!) who looks like he is 12. Got my cleaning done and had to find out all the bad news about the damage done to my teeth during my pregnancy with Sam...Oh GOODNESS! Well, everyone was very gentle, very nice, even Doogie Freaking Howser (who is probably not even old enough to remember Doogie Howser!) My cleaning was done and then came the "bad news" LOL...she did the x-rays (all 500 of them) and after the cleaning & gum check (you know, the one where they poke at the gums around each and every tooth 17 times...ugh) and I did OK with that (Remembering the entire time, please, that this is the dentist's office that doesn't even have a happy gas tank/happy nose hose for patients like me who choose to be blissfully unaware of what is going on) So, the puking from the pregnancy (and he confirmed my suspicion that it is from the pregnancies & all the puking) ate away at a few teeth. Basically, the three fillings I have are coming out (I used to be very good about going to dentists, but after my pregnancies, I hate dentists...I don't trust someone who wants to look in people's mouths all day. Gross. So, the three I have (fillings) need to be replaced, one of my fillings (or the inside of the tooth?) is "leaking" and then there are two other small cavities...so all in all, not too bad. The hygenist complimented me on my brushing & flossing but did tell me (shame on me) that I need to floss every day...I am an every other day flosser because of my limited time, so I got slapped with a wet noodle for that. She said I need to do it every day (Woman, I don't get a SHOWER everyday...) So, Doogie said he'd do the "fixes" in two appointments and I shook my head NO and was very insistent that it be done in one sitting...I know I wouldn't go back if only half was done... I didn't last time...I'm good about cleanings because I do brush & floss, so I like 'em extra clean, but when I've got cavities, I guess its like embarrassing or something...I don't know...I'm glad to get it fixed and not have a tooth hurting anymore. I think I will need to be sedated for this, but here goes nothin...right? Jonah has one cavity, which I knew about, its a big one and it happened when he had such oral defensiveness issues that he would barely eat, much less allow me to get a toothbrush in there. So, he needs a kid version of a root canal (pulpotomy) but no other cavities... Which, honestly is amazing to me because he will still sometimes clench his teeth and not let me brush....So, I can live with one. Daniel had NO cavities, but does have 2 or 3 more loose teeth...Jonah hasn't even lost one yet and is getting pretty angry at the tooth fairy! LOL...
What else...OH, lest I forget, Happy Chanukkah to all who are celebrating. Merry Christmas as well! I'm amazingly not stressed over the holidays! I'm stressed for other reasons (and have the hives all over my face & arms to prove it).
OK...I guess there is not much else going on. More photos added to the boys' photo album: The Boys . Some good stuff...'cept for no happy nose hose....bummer! On a note (one that I'm unsure of its source) I think I am the youngest person to have gone to a Neil Diamond concert ever...I was probably 21 when I went...Just kind of weird that I would think of that...odd.
Monday, 18 December 2006
Its Been A While...(again)
Things have been kind of crazy around here...in the month leading up to now (since Sam's had his immunizations, so 5 weeks), we've been dealing with a lot of seizures in Sam (but getting less frequent, he's now on 4 meds, which does make me sad, but the seizures are improved. 2 of his 3 original meds have been upped and a 4th was added.) So, he's dealing with a viral "something" right now, ears are red (not complaining of any pain) and a very unpleasant digestive symptom that I will spare y'all the on the details. So, the ear infections are viral, he's not complaining, having digestive issues....but he seems to be feeling OK, he's had a few additional sz, but is still happy & not complaining too much about anything (other than me, his brothers and anything that's not elmo...and I *think* its complaining, could be the Keppratude (my special word for the side effect of the epilepsy medication Keppra...has significant behavioral side effects...and I've got two children on it...one is Jonah...Sam is a piece of cake walk in the park, mothering made easy (in regards to comparison of his Keppratude vs. Jonah's Keppratude), but he doesn't have too many words and he does babble a lot, he seems to know what he's saying....but it doesn't sound rather polite or kind most of the time.
I'm on my holiday stress....I'm done with gifts, mostly done wrapping, have been for weeks....feeling stressed about the year, maybe... lots and lots of medical stuff this year...a serious medical problem for me (my gallbladder *thing*), several hospitalizations (LOL, including the one for me), two cancer/tumor scares (sam, Jonah), a diagnosis for a probable explaination of why Jonah is the way he is...the end of the year stress that we've been through all of this again... I really feel blessed that my boys are so, relatively speaking, healthy and that they are here with us....It doesn't get any better than that...and I know that, but the stress does indeed get to me...
I found the coolest, calender/planner today at the dollar store of all places...Its got windmills on the cover, kind of with a glare from the sun....How appropriate. Holland, yes, we're here, not the intended destination, and yes, sometimes, the sun gets in our eyes (that's what causes our sudden tears, which all sn moms get), So, I thought that was a pretty cool gift to myself.
I'm beginning to feel the "germs" LOL...No laughing...I've got the hand cleaner & lotion out like crazy...I love the hand cleaner....the alcohol makes me feel germ-free....but leaves my hands so dry! LOL....I'm so torn.
OK, not much else. Daniel needs some attention. I'm glad to give it....turn the lights off down here (God turned out the lights like 6 hours ago... It is beyond me why there are lights on in the house!) Cuddle, watch a cartoon & I get to fall asleep with the kicker. WOO HOO! I love his little soul so much...OK, I have to cuddle & pretend to be sleeping, It sounds like Jon is putting leftovers away....not going to interrupt that....
Happy Hanukkah to all of our family & friends who celebrate the Celebration of Light....Peace & Joy to all and If I don't post again before Christmas, I wish you all the most peaceful, joyous, loving, miraculous Christmas. This has been a tough year for us, and I know we are not alone in this... This Christmas, to me, is all about, more than ever, there being a child born a miraculous birth and it is so important for us to instill this into our boys...We are teaching them about Hanukkah this year as well...The whole "Santa" thing really just seems to get in the way....but Santa, to us, is a reminder of the gifts that have been given to us... So we are happy to pass along that tradition.
Dentist visit on Friday....a dentist who is 30 (I don't like anyone who is not significantly older than I, I'm old fashioned) and get this....NO happy nose hose....ISSUES WITH THAT....not sure this is going to go well. OK, more later....more photos added to the boys' photo album... Check it out. K...
Thursday, 7 December 2006
A Letter that had to be written...
Things are a little bit crazy lately, getting ready for Christmas stuff, party, housecleaning, decorating, Sam's therapies, just lots of stuff. Everything made more difficult with a two year old in the house! Sam's a nut! So, yesterday, an unuexpected breakfast mishap occurred and the letter had to be written...I really don't have this much extra time on my hands, but boy...it felt good. I hate paying for something and not getting what I pay for! OK, letter follows, have a great day!
Dear Fine Folks at the Quaker Instant Oatmeal Company:
My family was very excited to see a new Quaker product on the shelves. Mixed Berry Quaker Oatmeal Cruch with crunchy cluster packets has quickly become a family favorite. Imagine my surprise when, one chilly morning, I opened the newly purchased box of the aforementioned tasty hot cereal and instant oatmeal flew everywhere! After the initial surprise, one of my 6 year old twins (Jonah, who, while quite intelligent, has some obsessive-compulsive tendencies) grabbed the broom and swept up the oatmeal-y mess. Well, since one packet was not properly factory sealed ( said packet enclosed) we had quite the quandry. One packet for Daniel (the other twin), one for Jonah, one for Samuel (my two year old), one for mama (me) , but the problem was that this left only one packet for Papa (grandpa), who has quite the hearty appetite. Can you please remedy this unfortunates situation and allow me to comfort Jonah that sweeping before breakfast won't again be necessary? Thank you. Cordially, Mrs. Jennifer Zahm
Tuesday, 5 December 2006
I DID IT!!!
I figured out how to sign up for PayPal, went through the whole painful process (painful because you KNOW that if I didn't have paypal that I don't use online banking & the process if you are not "confirmed" through your online banking is a pain in the butt) OK....So...anyone wanna throw money my way...you know my email address...LOL...which leads me to my very next thing I have to figure out.....how do I get money out of there once its in there? Hmmmm, a quandry to be certain. Paying for something using paypal is another issue...but one thing at a time...right? Ha.
Uh...Oh, Sam ate some dirt out of the Christmas tree the other day, that was kind of cute. I'll be posting a photo of his only partially cleaned face in the photo album, along with some of our Christmas decorating...some have asked...So I'll do it! LOL...
Not too much else going on...PRAISE GOD...last week, Sam had his EEG, to see what is going on with these little seizure episodes he's having and lo and behold his EEG was NORMAL! NORMAL...for the first time EVER! OK...I don't get it...I'm guessing it was normal because he didn't have a seizure during the actual EEG, but I think that has to do also with him being on the Keppra instead of the phenobarb...which he was on when he had his prior EEG. So...he continues to have very few of the eye blinking episodes, in the past two days or so, I've only seen one. He is on klonopin (drug from hell) but wonderful Dr. H cut his dose into smaller doses spread out throughout the day...less at a time, more frequently...so at least Sam is not screaming at me ALL THE TIME now... He is looking good right now. His color is back. The EEG did not show any encephalopathy or that type of process going on, so while I am convinced that the vaccines are responsible for his becoming so ill and we are infinitely blessed that he has not, hopefully, suffered any permanent damage from the vaccines. He's got a boogery cold now and oh...my....I don't like boogers. Daniel & Jonah, on the rare occasion they get boogery, they can blow their nose or (Jonah can't blow, but he can wipe his face) but Sam tends to be a much more boogery child and oh...ugh. Ha....He tried to hand me one this morning...For the love of God Kid...leave it in your nose...I'll clean it out for you. Then comes in the snot sucker and if anyone likes the snot sucker less than I do...its Sam. Copious amounts of snot...LORD GOD...why oh why?
OK, Things going OK...Puppy driving me crazy, too cold to leave her outside (she would be outside playing with the boys for several hours a day... but she is still too nuts to have run of the house. Maybe we'll try today. She's in her crate right now...I have to figure this out cuz I can't leave her in her crate all day...she sleeps in there, but...OK...next step in being a puppy mama. She's really just like Sam...she'll jump up onto a table (not the kitchen table...that's just gross and too high for the dog to get on...Sam on the other hand...is often on top of the kitchen table.) OK....Let's give it a whirl. Have a great day!
Friday, 1 December 2006
SNOW-Tastic & Gag-Tastic!!!
LOL..SNOW!!! Not sure if I am going to be able to convince the kids to go out into the cold weather (their constitution is like mine...in other words "Uh, its cold, there is snow up to my knees and its warm in here and I know where the hot chocolate is") but...even after over an hour of snowing this morning...I'm SO excited that darn it...ITS SNOWING! LOL! So, I want to take the boys sledding...can you IMAGINE Sam snowing, he will flip out! I'll take the camera. Sam will be all for it (one of his very few words is "bye bye", so he might not know what's coming, LOL, and he will be very angry (I will go as far to say hes gonna be pissed!) at the prospect of wearing a coat...LOL, he HATES coats! but I think he will enjoy the sledding very much. Our school district never closes, so it will be a good time to take the boys (uh, weather, physics and p.e. lessons, right?)
OK...after all that shovelling, tea & water (because you should always drink 8-10 big glasses a day!), I'm feeling like lying down for an hour isn't a bad idea.
My dad has dental surgery today...then after that there is a showing of Rudolph at our local theater... I think the boys will get a kick out of that....Sam did really well at "Happy Feet" but its so hard to leave the house by myself with all three boys...I have to carry a pharmacy of rescue meds with me (Sam's klonopin, Jonah & Daniel's Diastat, Jonah's injectable B6 & injectable leucovorin) and God forbid something goes wrong...I can handle just about any medical emergency thrown my way, but when nervous nellie onlookers freak that a baby is having a seizure and people are screaming "CALL 911", its very disconcerting and I am dealing with said seizing child & trying to deal with the people who I'm sure are trying to be helpful, but its not helping, a kid with a seizure disorder having a seizure is not a medical emergency. PERIOD. Back off, don't watch cuz you're either gonna get mooned or see a little kid get a shot....and by the time the ambulance gets there (that I said "no" to to begin with), "sick" child is just fine, just a little tired....So, I'm always hesitant to go out alone. If Sam's in his stroller & Jonah's having an OK day (not a day when he feels the need to run headfirst into immobile objects, not spinning & flapping & drooling too much, etc) then those are the days we can go out...ya just never know when those days are gonna be. I'm gonna go and uh, turn up the heat...chilly out there.
Wednesday, 29 November 2006
Having An Issue...
I'm confused. I'm confused. I'm confused....maybe one day in the very near future, I won't be confused. I finally did it. November 29, 2006.... I did it and I said I would never do it...Oh Good Lord forgive my soul....I am barely one step removed from keeping my money under my mattress. I've got a bank account because I do enjoy shopping on line....but oh....I think I've just sold my soul to the devil or at a minimum some cult that will have me shave my head & walk around passing out fannie mae mint meltaways to strangers at the grocery store...OK, well, I suppose there are worse cults to be part of...but seriously...having issues here. I'm just gonna say it....I've signed up for paypal. I don't know what it means. I don't know how to use it and I have a headache. And advice, tips, comforting words....prayers for my salvation... all much appreciated....my spinning head.
Tuesday, 28 November 2006
I can't even sit down and eat my cheesy garlic bread with anchovies without being bothered! You'd think my breath alone would keep 'em away! No dice. Jonah already asked for "fish strips".... They really don't ever stop talking. Jon keeps telling me stupid things like "Sam's sleeping, go to bed." Like I'm going to wake up in the morning, the kids won't be twitchy on a million meds, stress all gone...Dumbass has to do 10 lesson plans...by tomorrow night....seems to me that someone has had 12 weeks to do it in, which comes down to less than one lesson plan per week...and that someone (not mentioning any names!) procrastinated again. And, after he pulls off this "superhuman feat" (his words...), and plays basketball tomorrow morning (probably having to stay up all night...) and works all day and then goes to school tomorrow night...boy, he's gonna need a day off by Thursday! Whew! I wish I could take a day off...no dice...I just got told I'm not in the "real work force". I hope he remembers his pants tomorrow because I'm not taking his britches out to his work because he's walking around like an idiot in his basketball shorts all morning cuz he forgot his pants.... I couldn't make this stuff up...but seriously, I'm not packing up the kids & driving 45 minutes to take him his britches again....suffer it out in yer shorts, son...natural consequence of forgetting your trous is that you walk around with chilly legs.
The Good, The Bad & The Cranky
Today is an OK day. Not nearly as aggitated as I was yesterday...Ha...I was pretty irritated yesterday....not good. The neurologist's nurse decided to argue with me. HA! I refuse to argue with someone who is "stupider" than I...."How, Smarty Pants", you ask, "do you know she is "stupider" than you?" HA...again! ANYONE with half a brain (I have a full brain, MRI proves it... brain function is sometimes in question, but I do have a full brain) but anyone with HALF a brain and very little brain function should know better than to argue with a sleep deprived mother of 3 epileptics and one of whom is 2 and has been seizing for 2 straight weeks and YOU are a source of her stress by not giving the doctor a message. THAT, my friends, takes a special kind of stupid. I really don't care if I piss her off, because as far as I'm concerned, # 1, Ha...I just don't care and # 2, if she is anything like any of the long line of other young 20-something snips before her, she won't be employed there for too much longer. OK...so that was aggitating and for some reason, bothered me most of the day...I have a very difficult time with people who don't do their jobs (usually only if it affects me and family/friends...I really don't care if the construction workers are picking their noses or taking their 15th coffee break of the morning...just if it affects those around me).
Another annoyance...Amazon.com....they freaking sent my box (yay...all good) but why on earth would you package a paperback book NOT flat? DUH!
I do love 6 year olds (especially mine!) who get excited about construction paper crafts. LOL....We've done penguins, we're doing snowmen & snowflakes! LOL....Speaking of penguins...Happy Feet...the movie...another thing I LOVE is # 1, movies that are about someone (or thing) "different" SO BE IT if Mumble's "heartsong" was tapdancing! GO MUMBLE!!!! Right along the lines of Nemo's "lucky fin"....its the special needs mom coming out in me...but YAY for people who are different! Can you imagine how boring it would be if everyone were the same...worse...can you imagine how AWFUL it would be if everyone had lost their mind like me? If I think I'm aggitated now...HOLY CRAP, I can't imagine having to deal with myself in everyone I had to deal with...LOL...that would be so not cool. And, # 2, I LOVE the movies that have great soundtracks (Shrek, Shrek 2...there's been a lot of 'em in recent years...Happy Feet is another)
What else is good? Sam had his EEG this morning (which is a good thing), his "girlfriend" (who has done everyone of his EEGs and had the NERVE to get married last year...sheesh! LOL) is just so nice. I think she thinks I'm nuts. I guess that's OK, I might be...but that went well.
OH...94.3 (on the radio dial) and 93.9 are VERY close to each other. That is a good thing. I'm usually set to 94.3 (K-Love) but our "All Christmas Music All The Time" from Thanksgiving thru Christmas is 93.9...so two little clicks and I am back focused on the road. I am a good driver (really I am...always go the speed limit (how annoying is THAT?!?!), eyes on the road, not using the cellphone unneccessarily, etc) So, while I am a good driver, I acknowledge that there are a few things that I (and pedestrians & other cars in general) are better off with me not doing...concentrating on radio station changing is one...going in reverse is probably the other biggie... the more time I spend going forward...I just feel the better of everyone is.
OK...I think that's it...My head hurts. Sam is napping (another good thing) Oh...annoying...Sam had a seizure WHILE his girlfriend was hooking him up to the EEG, and none during...grrrr...hopefully we will still see if there is something else we need to see....OK...oh...another GRRRR...this stupid med he's on....I got me a screamer....Seizures are significantly decreased but the child doesn't stop screaming. Ugh! I'm twitching a lot and after a few hours of him being awake, I definitely start to get a histamine reaction to being his mother....OK...now that's it.
Sunday, 26 November 2006
I Am SO Blessed
I am the luckiest, most blessed mama on the planet. I have the coolest kids ever (although... my mom is pretty darned lucky too! LOL) and I don't even have any words to describe how fortunate I feel to have them in my life.
This has been a trying couple of weeks for me, personally...Sam's been ill since he received immunizations (see previous posts) on the 13th. He's having lots of seizures and is on increased doses of his meds and a new med (why not add more... we don't have enough meds around here anyhow?) but he "only" had three seizure clusters (for lack of a better term) today...that is significantly down from a few days ago when it was almost constant. I'm scared but anxious to get an EEG & whatever follow up he needs depending on the EEG results...I'm very anxious to find out if there is any permanent damage in my sweet baby's brain. But, he has been much happier, this second week (this past week, week # 2 of the reaction) than he was during the first...very hard to see him having all of these seizures, but most grateful that he is at least happy most of the time now. He's not really eating well, but he is still drinking his bottle so he is getting his meds down.
I think the reason that I am feeling so very blessed in the middle of such a difficult time is that I found a picture of Jonah today. He was about 3 in the picture and he just looked so sick. (check out the photo album linked to in a recent blog post) He looks so much better now. The photo was taken when he was having hundreds and hundreds of seizures every day and even with his physical and cognitive issues now, Oh my....I would not trade this for any of those days. I feel so fortunate that he is on a med combo that has him relatively stable seizure wise and even with the "fun" side effects of the meds....well...I'll take it. Look at the difference in the photos & you will see what I saw. I cried like a baby when I found that picture...but quickly felt better because his seizures are so much more controlled and he just looks so much better.
I can't even ask for a sweeter child than Daniel. He is so helpful and sometimes I feel bad that he has the brunt of chores & such. I do ask the older boys to help & sometimes Jonah just well... he's Jonah & by the time I've explained it again and again, Daniel's done it already. He loves helping but I try very hard to not give him too much...he likes helping & he gets an allowance for helping with simple things like letting the dogs outside, feeding the puppy, taking out recycling...So, like I said, not too terribly difficult stuff, but by the time I gather bottles & cardboard, Jonah has forgotten what I asked him to do in the first place. He's a sweet boy.
Sam is a little ham. He loves the camera, he loves attention, loves Elmo, loves cuddling and loves playing with his brothers.
All of the challenges that the boys have gone through are for a reason. I don't know what God's plan is for them, but I do know that the life lessons that they've taught me are priceless. Without them, I would most certainly not be the person I am today. I've never really had a problem with having a voice...yeah, that's always been a strong point of mine...but I never had such a clear purpose for my voice. Now, it is crystal clear... much to the chagrin of almost anyone who has ever come into contact with me and challenged me as to what I felt was best for my children. The vax reaction has taught me not to compromise...Most things with the boys, for me, are cut and dried... no compromise...but I did compromise on the vax, on "my terms" and delayed them...but had I gone with my gut...Sam wouldn't be suffering right now. I can't look back and say that I was wrong and kick myself for it...won't do a bit of good. I WAS wrong to compromise what I felt was best for my children and have learned that lesson the hard way that compromise is no longer in my vocabulary when it comes to the care of my children. That's a good thing....ha...good for my boys, good for me...big old pain in the butt for everyone in the health field. Oh wait...here's me pretending to care.... darn, that wasn't very convincing, was it?
OK...and last but not least, this has nothing to do with my amazing children, but I was kind of bummed about having to stay up until midnight tonight to catch the walmart.com sale (that was supposed to start at midnight) and I have been checking daily for an item that I hope my husband does not pick up for our boys, but it is out of stock...and the sale price was posted at 8:30 tonight! GRRRRRR. So, my sister said she saw them (Darth Vader voice changers) at the store the other day for the sale price (this was supposed to be an online only sale!) and so I called my least favorite store on the planet (well, maybe second least favorite... the one store in the mall with the neon beer signs has always bugged me) and FINALLY talked to someone in toys who confirmed that there are "a few" Darth Vader Voice Changer masks in the store and I was able to avoid bribing him to pull me a couple and I grabbed Jonah (who was just about to sit down to a bowl of chili) and we ran to walmart at 9:00 at night. Dressed for online shopping (LOL, it was almost 60* here today...we burned leaves in t-shirts!) we went into the store and got the TWO masks (for the SALE price!!!) and got the heck out of there! So...I didn't get to shop from the comfort of my cozy computer chair, but I DID get what the boys (my sister's twins) will be THRILLED with. I wish I had more $$ because I would have bought a bunch of them & sold them on ebay....they're flying off the shelves! But I would feel really guilty about doing that...If I paid $10 for it, I'd be like....oh, you seem nice...give me $14 to cover my cost & shipping...Merry Christmas... I'd be a really bad ebay seller! LOL... OK...So, I'm blessed. And I feel even more blessed because people, mostly people who don't know us, our family and friends know how blessed we are to know these little boys, but a lot of people perceive us as a "sad story" and I just want the world to know that my children are not sad. They are people & no matter what their medical diagnoses are, they are not numbers or cases...they are sweet, adorable, fun, funny, witty, helpful, charming, playful, rambunctious boys who are the light of our lives. Any perceived imperfections are in the heart of the beholder....Give kids a chance...I guarantee you that you will be pleasantly surprised every single time. I know I am.
Sunday, 19 November 2006
OK...If the flakiness gets any worse...bad things might start to happen...
I did the unthinkable...Now, I've been VERY good. I've not had a single piece of Halloween candy (since Halloween & then it was ONE mini Snickers...I swear! I remember because I got hives from the chocolate). I skip dessert & double up on salad with lemon juice dressing...but there are some things that are just not OK. Like oh...I don't know...but one I do know is fat free cheese! I can't believe I bought fat free mozzarella.... Is NOTHING SACRED?!?! I'm having HALF a piece of veggie pizza & I wanted to sprinkle a *little* bit of extra cheese on it...I'm telling you...this is just not right. It "melted" in a plastic-like sheet on top of my not e. Coli contaminated spinach. (Did you hear that the outbreak has been blamed on wild pigs? Now...I wish I could blame some stuff on wild pigs! HOW COOL IS THAT?!?!? Anyhow... Good God...I bought two packages of the stuff and Frankly, my dears...I just can't use it. Awful, Awful stuff. Ugh...
Oy Vey...Whatta Week
Mood: not sure
Its been a heck of a week. My last post was a hint at the very beginning of what was to come with Sam's vaccine reaction. Thankfully, this ends well, Sam is just slightly worse for the wear...His words are not with him...he has "mommy" and "byah" (Grandma)...He is trying to say other things, though... but he's definitely lost some of his words...there were not too many to begin with...
OK, Sam had lots of seizures and fever. Long story as short as possible for me is that this has cemented my gut feeling that immunizations are not for my boys...I've always delayed vaccines and made sure that the boys were very healthy when they got shots...but no more. If you think that Jonah is not thrilled all the way to the moon that I cancelled his appointment for his flu shot...well...he's pretty happy with me!
As if seeing my baby so sick was not bad enough (it was horrible, he was walking around, bumping into things & looked dopey and seizurey...the ped said it looked like he was walking around in a postictal state (postictal is the state a person is in after having a seizure), which meant that Sam was probably having lots of seizures that we were not seeing...not very comforting. But even after saying that he was having lots of seizures, they sent us home. Another ped in the group said "We" don't concern ourselves with night time seizures... Uh....well "we" do. So, apparently the new standard of care is that not only is it totally OK for a toddler with a seizure disorder (which was controlled before the administration of immunizations) to have a new seizure type (as long as they are at night...its fine!) but its also OK for said toddler to be having "lots" of seizures throughout the day and to be walking around in a perpetual postictal state....Hmmm. Shows what I know. I am disgusted that this vaccine reaction was swept under the rug....A mother frightened at her child acting very much NOT normally, high pitched screaming, aggitation, fever, not sleeping... I was told to "wait and see..." Give us a call on Monday.... Not quite sure what the aftermath of this is going to be. The neurologist (who has a rotten staff), to my knowledge, wasn't even contacted, despite several phone calls. And apparently, his nurse has recieved her M.D. since we last saw them in the office last month. I'm very much not happy with that situation either.
So, I guess my feeling right now is simply relief. Sam is sleeping more normally, he's not screaming so much...he's getting his happy disposition back. We went to see "Happy Feet" yesterday...his first movie...he did great, he loved it. Every time he saw something he liked, he pointed at the screen and yelled "MOMMY!" Then he and Jon took a nap...right there in the theater. I'm very relieved that it wasn't worse, as bad as it was, I do realize how much worse it could have been. It was a long week without sleep & I got screamed at a whole lot...not too big on that. But, assuming that the worst is over, this ends well...and that makes me very happy.
Tuesday, 14 November 2006
You know the sound that a dog makes when they just want to get your attention, its not really a yelp, not really a bark...well, mix that with the sound of a parrot screeching, a coyote howl, the first three seconds after a baby gets a shot and a few seconds of fingernails being scratched down a chalkboard... That's the sound I just made...oh yeah...plus add in a really big sigh! LOL...
Sam's in bed, is having a fever issue from his immunizations yesterday..."only" 102.6* before bed... that's "Nothin'" But he's pretty miserable. I've given him fever reducers & he's comfy again, but...oh, the whining...
We said goodbye to Jon's mom this evening. It was a whirlwind weekend for her and it was good to visit again.
We met Jon at the mall tonight to walk around & for dinner before he took her to the airport & after dinner & we said our goodbyes (Jonah with a firm handshake, a giggle, then a hug), the boys & I walked around for a bit & other than pictures with Santa (Which I will have on our regular website in the next day or two), I didn't buy anything...I'm losing my groove! Can you stand it?!?! At a huge mall & not buy a thing! I was ready for some Christams shopping & it just didn't happen... Sam was getting crabby (fever starting to creep back in) and I felt like I had just eaten a buffalo chicken sandwich (I had)...so we came home! Ha...
OK, not much else going on...I promised the twins a "sleepover" tonight, so they unfolded the family room hide-a-bed and guess where I'm sleeping tonight...Ha...So...its getting late...gotta go turn on a movie and get the can of redi-whip out...most families eat popcorn (did that yesterday with Nana...how painfully normal...we prefer redi-whip, straight from the can.) OK...Good Night. Sleep Tight...I hope the shopping bug bites... otherwise I'm not getting any Christmas shopping done!
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