Friday, December 24, 2010

Merry Christmas!!! =0)

Please watch the videos at the bottom of the page (don't forget to turn off the music player at the bottom). =0) I haven't had much time to post recently, but I am working on a post about Isaiah's health - I have been waiting on labs to come back to (hopefully) give a little bit of info. as to all that has been going on here. Isaiah is doing okay - he hasn't had an ER visit, just lots of doctors visits since his last episode of anaphylaxis over 8 weeks ago. Anyway, the videos - - - MERRY CHRISTMAS!!!! =0)
(By the way, I have added one just because . . . he's just too cute! =0) Mommy's little Rock Star! The guitar was a Christmas present that he chose to open tonight - I always let him open 1 present on Christmas Eve, he chose this one)


(don't forget to mute/pause the music player at the bottom of the page) =0)

Saturday, November 27, 2010

I love this time of year! It's warm, it's cozy; most people are super-friendly - it can bring the best out in some people . . . (sometimes the worst). =0} It's a time of year where there are tons of beautiful decorations and Christmas music makes its appearance. Stores are busy with holiday shoppers and sales galore. However, it’s not always peaches and cream for those on the Spectrum - the Autism Spectrum. For Isaiah, this time of year is amongst his favorites, too, but the crowds, loud noises, and tons of change seem to overload his brain and in the midst of all the business and happiness (and decorating), we find Isaiah having an untimely, all-out meltdown.

Family over for Thanksgiving dinner? Meltdown.

Thanksgiving decorations going up? Meltdown.

Thanksgiving decorations coming down and Christmas ones going up? Meltdown.

Let's not even talk about the Christmas decorations coming down . . .

He hates change. We try to make the transitions happy for him - he even helps with the decorations or preparations (sometimes). But he can't seem to escape the whole sensory overload sometimes. Usually, one or two small changes are fine. It's more or less when those changes are in preparation for visitors that it can be a problem (when you have to make room at the table or move some of the furniture so there will be room for the guests and the Christmas tree).

Then, there is the chaos of extra people in the house, who bring extra noise because of the many stories that are being shared - it's then we find a meltdown. He enjoys the people being here, it's just that just doesn't like the noise. This is why theme parks are generally a bust for us - Isaiah can't take the noise, the busy-ness, the crowds; too many things to see and hear. Shopping, as you may have guessed, is just as tough on him . . . add to the crowds a crying baby/toddler/child and Isaiah becomes a mess.

This year, the family actually saw the meltdown (which used to be avoided by me taking Isaiah aside for time to calm down . . . or a video where Isaiah could escape for an hour or so). This year, that didn't happen - there was too much to be done and mommy overlooked the aside time. Add into the whole overload the relentless fever that he has had for 5 weeks, the fact he's not feeling very well, the fact that he's not sleeping well again, and you have a recipe for the mother of all meltdowns (at some point, I will write a post on his health situation). Did I mention the withdrawal from steroids and change of medications somewhere in there??? Poor guy had his plate absolutely full and just lost it. We had the gaping mouths, bulging eyes, and non-understanding comments going - people who don’t understand what it means to have a child with Autism and Sensory Processing Disorder. At first, I wanted to be angry - I wanted to dish out the hurtful comments in response to what I was hearing . . . but I realized they just don't understand. What would my hurtful comments do but cause squabbling and more hurt feelings?

You don't understand until you have lived the experience. Even working with children with Autism, I never got it. Sure, I had a wee bit more of an understanding (and learned not to point fingers and say a "misbehaving" child was just poorly disciplined), but I never truthfully got it - until now . . . now that I have my own child with Autism.

Here is a poem a good friend (and advisor) shared on Facebook (thank you, Kathy) that seems to explain it all from our point of view (add "he" for Isaiah where the poem has "she"): =0)


An Autism Christmas Poem


Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse

We tried melatonin
And gave a hot bath
Asleep early for Christmas?
...an unlikely path

The children were finally
All nestled in bed
When visions of Christmas
Ran through my OWN head

Did I get the right gift?
The right color and style?
Would there be a blank stare
Or even, maybe, a smile?

Friends & family come
But they don't understand
The pleasure she gets
Just from bending her hands. (or jumping) =0)

"Just make her stop it," some say
"Just tell her "no",
“You must learn to be tough.."
On and on they go...

We smile and nod
Because we know deep inside
The debate is moot
Let them all take a side

We know what it's like
To live with the spectrum
The struggles, triumphs
achievements and regressions.

But what some don't know
And what some don't see
Is the joy that we feel
Over simplicity.

She said "hello"!
She ate something green!
She looked me in my eyes
She did not cause a scene!

She peed on the potty!
Who cares if she's ten;
She stopped saying the same thing
Again and again!"

Some others don't realize
Just how we can cope
How we bravely hang on
At the end of our rope

But what they don't see
Is the joy we can't hide
When our children with autism
Make the tiniest stride

We may look at others
Without the problems we face
With envy, with wonder,
Or even distaste,

What we want them to know
What's important to see
Is that children with autism
Bring simplicity.

We don't get excited
Over expensive things
We jump for joy
With the progress work brings

Children with autism
Try so hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky

So to those who don't get it
Or can't get a clue
Take a walk in our shoes
And I'll assure you…

That even 10 minutes
Into the walk
You'll look at us all
With respect, even shock.

You will realize
What it is we go through
And the next time you see us
I can assure you

That you won't say a thing
You'll be quiet and learn,
Like the years I learned to
When the tables were turned.

~Christine Muczyk

Friday, November 19, 2010

Soft Clothing Giveaway!!

I love Christmas! It's my most favorite holiday. I love just about everything about it - the sights, the smells, the sentiment, the warm cozy feeling, the smooth voice of Bing Crosby playing in the background, the thought that it's the season we celebrate God's gift of Jesus and life to the world . . . it's just a wonderful season!


Considering the season of giving is now upon us, Soft Clothing and Hartley's Life with 3 Boys Blog are having a Holiday Giveaway!! I have mentioned Soft Clothing on my blog before, but just in case you are wondering, Soft Clothing is a company dedicated to making soft clothing - comfortable clothing designed with children with SPD in mind (Sensory Processing Disorder).


As for Hartley - I guess you could say that she found me. =0) I really enjoy reading her blog about life with a child with SPD and Autism.


I can tell you, Soft Clothing really lives up to its name. No matter how many times we wash Isaiah's pants and shirts, they are still as soft as the day they arrived - and we don't even use fabric softener!

There will be 2 prizes given away (one for a boy and one for a girl) and will include prizes that focus on fine motor skills, sensory integration, creativity, and more. Here is what will be included (taken from Soft Clothing's site):


Quilted Train Stocking from Pottery Barn Kids (boys prize)
Quilted Angel Stocking from Pottery Barn Kids (girls prize)
This is Gabriel Making Sense of School, by Hartley Steiner
SPD Awareness Calendar (for sale at http://www.sensoryplanet.com/)
Glitter bouncy ball from Pottery Barn Kids
Alex Finger Crayons
Tangle Textured Jr
AKU Sensory Ring
Melissa and Doug Jumbo Paint Brushes (set of 4)
Melissa and Doug Deluxe Fuzzy Make your Own Monster Puppet
Wonderland Eco Friendly Rainbow Sound Blocks
Mood Therapy Putty
Soft Seamless Sock 2-pack
One complete Soft dressy look for girls OR
One complete Soft dressy look for boys



Isaiah has some sensory issues with texture, especially when it comes to clothing. Since Isaiah's skin is so sensitive, I cannot use fabric softener in his clothing, which can make the clothes scratchy to him, which (of course) drives him nuts. Have you ever tried to wear blue jeans without fabric softener??? Enough said? =0) That's why I love the denim pants from Soft Clothes - there is no need for fabric softener because they are super soft. Isaiah has yet to complain about them being icky.


So, how do you enter? Click on any of the embedded links above or click HERE and enter away! =0)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


As far as Isaiah's health . . . I have more to post on our recent All Children's Hospital appointment (it was an unplanned, emergency visit) . . . but it will have to wait until my brain has a little bit more time to process all the info.


So, for now, here are a couple of pictures I want to share with you:



Morning snuggles with a napping Ye-Ye =0)


. . . and just because she rarely shows up on the blog
(thank you, Nai-Nai, for all your hard work and support!!!)

Sunday, October 24, 2010

Isaiah is my Hero


God was really watching over Isaiah last night. I had finished cleaning up after our little Fall and "first tooth lost" party last night and was sitting outside Isaiah's room getting ready to put his money under the pillow, when I heard a crackling, snorting kind of sound coming from my child. Isaiah does snore quite on a regular basis (and quite loudly, I might add), but this really sounded different. At first, I thought, "he's just snoring weirdly tonight - no biggie." But, I just had that feeling and then heard Isaiah moving around a bit. When I turned on the light, I saw Isaiah covered with a rash, red, swollen, and the areas that weren't red were blue (the tip of his nose, his very swollen lips, a portion of his forehead, his swollen fingers and hands, and his swollen feet). I grabbed him and administered the Epi. He looked awful! The noise I was hearing was him trying to breathe! He was so swollen. Even when I gave the Epi, Isaiah didn't cry and didn't even flinch (he was still somehow conscious).



(The pictures were taken after the Epi while waiting for the ambulance - his allergists want to see pictures of his reactions.)

By the time the ambulance arrived, Isaiah was still panting, but breathing . . . and his feet and ankles were so blue that they looked dirty. This time, the paid firemen didn't wait for the volunteers to arrive (we have two fire departments close to us - the paid firemen are closer, but usually don't transport because of zoning). Things calmed down in the ambulance and his BP and sats were all relatively normal by the time we got to the hospital (he still had tachycardia and his BP was just slightly below normal).

Thankfully, today, he is fine - a little swollen, but fine (he's a tad high on prednisone). =0} I can't imagine what would have happened if I hadn't been sitting right outside the door - I wouldn't have heard him. God was watching over my little man - I am so thankful for that. I am so glad that I didn't stay out in the living room and write his note (I wrote a note to go along with his "tooth fairy" money), I am so glad that my purse was right outside the room . . . I'm so thankful that I was sitting on the floor in front of the door and I'm glad I wasn't asleep - I don't think I would have heard him. God was really watching out for him - He is so good!

Isaiah will be on prednisone for the next few days (a pretty hefty dose, too). =0} Hopefully it won't mess with him too much - he gets a lot of energy and can be quite moody on it. =0) If my post is redundant or really doesn't make sense . . . sorry, I need to go to bed. =0) Goodnight!

Saturday, October 23, 2010

We have an announcement!!!

ISAIAH LOST HIS FIRST TOOTH! =0)
(can't tell I'm excited, right?)
=0)

Here is the new toothy (minus one) grin:


And, apparently, I'm super mom because Isaiah says that when he goes to sleep I'm going to whistle and turn into the tooth fairy. I had no idea! =0) He has quite an imagination.


This tooth was Isaiah's very first baby tooth, so it's fitting for this tooth to be the first one he lost. While this photo isn't of the moment I discovered his first tooth, this photo at least shows his first tooth. =0) The funny thing is that I even remember the outfit he was wearing when I discovered his first tooth - little blue fleece with "68" embroidered in silver on it. =0) Ahhh, seems like yesterday.

I'm so proud of my little man! On top of losing his first tooth, Isaiah is doing so well in Awanas this year. Last week, he memorized the names of all the books in the New Testament - 27 books! Isaiah has quite a memory and he is absolutely determined to memorize whole sections of his book (approximately 4 verses per section). He's an amazing little man. And, on top of that, Isaiah is reading words that he shouldn't even be able to read (we have to hide the verses book just to make sure he's not cheating). =0)

Well, I think I should probably end the post here . . . you know, because I have to turn into the tooth fairy and all! ;0)

Upcoming appointments: this Wednesday, IEP meeting (with a Family Liaison who already has the school on their toes . . . and we haven't even met with them yet!) =0) Pray that all goes smoothly and that we can get this IEP in place before Isaiah has any problems with school work.

Health update: Isaiah is still having problems with petichiae and bruising . . . and the usual allergy & masto symptoms (including the seemingly endless battle with eczema) - still no anaphylaxis!!! We're trying the pill form of one of his meds (Xyzal), so please pray that it works and that he will continue to take it. He hates pills and would much rather have the icky-tasting liquids (it's a sensory thing, I guess). Pray also that the pill works just as well as the liquid . . . any form of messing with meds makes me nervous.

Friday, October 8, 2010

My baby put on his shoes!!!


ALL BY HIMSELF! =0) He may not have tied them, but he did put them on for the very first time! I'm so excited! So excited that I gave him a huge hug at dance (where he put his shoes on by himself for the first time) and told him just how very proud of him I am.

And if that just isn't enough exciting news for you, well . . . Isaiah has his very first loose tooth!!!! =0) I'm so excited (and queasy)! He wasn't too thrilled about it at first (there were tears shed), but then I explained that once he loses this tooth, he will get a grown-up tooth in its place . . . and there were more tears shed. =0} After telling him it was okay to lose his tooth, and making a big happy to-do about it, he cheered up and squealed, "and Ar-fur said a toof fairy brings money!" =0) (by the way, Arthur is a PBS Kid's TV show)

His baby tooth (the very first one that showed up) is really crooked . . . and if you wiggle it, you feel lovely scraping and grinding (that's where the queasiness comes in . . . at least for me). =0}

It seems almost like yesterday I was sending pictures of the very first tooth over the Internet to just about anyone in my e-mail address book. Now, I am writing about that same tooth being loose and waiting for it to fall out so I can send (yet again) pictures to anyone who will read about Isaiah's very first missing tooth.

*sigh* =0)

Isaiah has also learned two new songs that he loves singing at the top of his lungs . . . in addition to Toby Mac's "Just give me that funky Jesus music" . . . (you might want to turn up your speakers and pause the music player at the bottom of my page) =0)



("I'm walking on shun-shine! Whoa-oh-oh!") I love it!



("Shake and move dance, shake and move dance, yeah-yeah!" . . . Shake Your Groove Thing . . . he got it from my birthday card.) =0)

He's such a ham! =0)

I am just so proud to be Isaiah's mommy! =0)

Tuesday, September 21, 2010

A Smirk & Catching Up . . .

First, the smirk. =0)




The iheartfaces photo contest this week is all about smirks. Isaiah is notorious for his facial expressions . . . including smirks:

So, I have entered the above photo in their contest (boy, he's gonna love me for that photo when he grows up). =0)

I was trying to get his 5-year pictures (for our annual tradition of birthday photos) and Isaiah had just about had it with me. So, when I said, "smile," he gave me this face. Goober. =0)

And, as far as the catching up . . .


Isaiah had his appointment in St. Pete 2 weeks ago. Usually our appointments are about the long list of meds, more talks about avoiding known triggers (allergic reaction triggers), reactions and ER visits since the last appointment, etc. This one included a lovely Obama's-new-health-care-policies talk. A talk about the long-term side-effects of the medications and the "options" that are available to us. We have options? Really??? I guess my idea of options is a little less complicated. I don't know about you, but I thought that taking Isaiah off meds would be worse than those side effects - my gut is telling me that uncontrollable anaphylaxis is much worse than the damage the meds can cause (including irritability, glaucoma/cataracts, weight gain, etc.). He's five for Pete's sake! The poor doctor kept repeating, "I'm sorry, it's the new policy," because even she knows how insane this sounds. A sadly funny joke she made was that Isaiah is a walking antihistamine pharmacy. =0} He is on everything there is (approved by the FDA) to treat the symptoms of allergies.

The meds talk also included a discussion on Singulair, just one of Isaiah's 15 meds. Apparently, Singulair can cause behavioral problems (including suicidal behavior/thoughts). While I would hate to see my 5-year old even struggle with that, I also hate to see my 5-year old struggle to breathe during an allergic reaction. Singulair has actually helped Isaiah with the breathing issues during a reaction, making the reactions "easier" to manage (breathing issues always preceded anaphylaxis before Singulair was added to his daily regimen). While I would love to take him off Singulair (hey, it would be one less med to give him every day), he doesn't seem to have any extra behavioral issues - everything we are experiencing now was there before Singulair was given to him. So, it stays until God tells me otherwise. =0)

Apart from that, the petechiae was another cause for discussion - it's still there and pops up quite frequently. In fact, he hasn't gone a day without new spots popping up. Since we do not know what's causing it, we're supposed to keep an eye on things. If it gets worse, or he starts having nose bleeds/other bleeding, then we obviously have to make an appointment for blood work.

So, that was that appointment. =0}

Then, last week, there was the neurology appointment. No worries (for those of you who did not see my post on Facebook), Isaiah's test results are NORMAL! =0) No cerebral palsy, no encephalopathy (brain damage), and no chromosomal/mitochondrial defects! This is all good news - God is wonderful! To be honest, though, I was hoping to find something that was curable so that Isaiah wouldn't have to go through any more stuff - something we could just make go away. But, I will take normal. =0) The neurologist gave us a script for PT (physical therapy) and sent us on our way.

The next day, we headed to Nemours for the geneticist appointment. This was a thorough appointment where the doctor went over health records, examined Isaiah head-to-toe, and reviewed known family history. Apart from a patch of light skin on Isaiah's tummy (and close-set eyes), she didn't make a note of anything in the physical exam (oh, and the tightened hamstrings and tendons and loose upper-body). She basically confirmed the ASD (Autism spectrum disorder) with a recommendation for the various therapies that go along with the diagnosis (which I explain a little more below). =0)



On Thursday (yeah, full week, I know), Isaiah had his Kindergarten assessment. He did extremely well - he knows his letters and their sounds. The only portion Isaiah had trouble with was the language portion (not surprising). Isaiah doesn't really seem to understand a lot of what is said to him, and he has a lot of trouble letting you know what he is thinking/feeling (conveying opinions). They noticed that he has trouble with directions or questions unless they are rephrased a few times - and he's beginning to have an issue (minimal) with eye contact (mostly when he's frustrated because he is confused or when he's being tested on something that he's bored of talking about - something he already knows and no longer wants to discuss). =0} He most certainly did not get that from me! ;0) (thanks, Mom, I do remember the stories of me and Kindergarten) Ehem.

So, we are setting up an IEP meeting to talk about ST (speech therapy), RDI (relational development intervention - a behavioral therapy), PT (physical therapy - which the doctors are already working on), and OT (occupational therapy). In the future, you can use this post as a reference for all the acronyms, because it has taken me soooooo long to type it all out. ;0)

I think that's everything . . . =0) I may even get to have my cast taken off tomorrow!!! =0) I'll let you know.

With all that has happened over the past few months, even years, I am frequently reminded of how grateful I am that God never leaves us nor forgets about us. He has always proven Himself faithful and is always my comforter. I am amazed when people ask me how I handle all of this. The truth is, that I don't; I couldn't handle it all by myself. Apart from God, I think I would go insane - there has been a lot more that we have gone through that I have not posted on this blog. I can honestly say that without God carrying me though all this "stuff", I don't know that I could have handled it. If you haven't given Him a glance, you should - He's a life-saver and changer. My favorite thing to say about Him, apart from how much I love Him, is that He's cool like that. =0)

Blessings,
Kelly

Wednesday, September 1, 2010

Well, I called about the labs . . .

. . . and . . .

. . . still no results. =0( So, I guess they'll take 8 weeks to come back. I'll probably call everyday until they come back, too. ;0)

Since I can't resist . . .
. . . a couple of older pics I haven't shared here . . .

. . . and a somewhat recent picture of him (taken before my wrist was broken). =0)

Monday, August 30, 2010

Tumbling and Tap

So, where have we been lately?


For starters, Isaiah has been doing a bit of tumbling . . . (boy's gymnastics)


. . . And a bit of tap (ballet/tap/jazz/hip-hop) . . .


How about Mommy??? Not much of either . . . =0}


My very first cast and broken bones at 29! How did this happen (to my right hand, which also happens to be my dominant hand)? One pointy elbow met my very vulnerable wrist, two fractured bones and a couple of doctor's visits later I'm in a nice purple (water-proof) cast. =0} Just to explain a little, don't tickle your twelve-year old nephew who has taken tae kwon do, or you may end up in a cast for 6 to 12 weeks. Ahem.

Taking photos isn't exactly easy, either. Guess I'm going to have to try turning my camera upside down! =0)

Anyway, things are going well with Isaiah's schooling. He is still adjusting to his new schedule and routine, but he's handling it all much better.


Writing is going about the same, but at least he is interested in touching the pencil. =0)

As far as health issues, we haven't had an ER visit in a bit (since July or about 6 weeks ago)! Other than that, Isaiah has had the "usual" issues: flushing, mood swings, itching, rashes (especially on his face and around his eyes for some reason), appetite changes, GI stuff, swelling, petichiae (though we haven't had labs drawn for it because we haven't had all that much of a break from it and I don't want to put him through too many pokes), sleep issues, pain . . . the stuff that I hate to even admit that has become "normal" for him.

Labs? Not back yet. I'm going to call tomorrow, seeing as the labs were drawn almost 7 weeks ago (the labs were supposed to take 4 to 6 weeks to come back). Isaiah has a few appointments coming up in September & October, so I will keep you posted on all of that.


My dad? He's in West Virginia. =0) He said that he's in a bit of pain (and grumpy because of it), but he seems okay. I was actually worried that he would get lost at the airport! He has had so many memory issues lately (part of this Waldenstrom's thing) and had even asked odd airport-related questions before he left (flying should not be all that new to him considering the number of times per year he has flown somewhere). He has also been getting lost around town, here, too. I think he has an appointment when he gets back, so I will let you know how that one goes, too . . . if he lets me tell you. =0)

Friday, August 13, 2010

Thoughts on the Week

I can't believe this week is already over! Isaiah has been in kindergarten for a whole week! He has amazed me with what he already knows (the kid reads more than we know - even reading the words large and small - and knows all the names of the planets in our solar system), and I'm sure he will continue to amaze me.



We had fun with language arts, talking about Cinderella and The Frog Prince; we had fun learning about light and how our eyes work in science; we have learned how to make a clown puppet using various shapes in math; and we have learned about the seven continents and what makes them special in history.



Isaiah continues to work on writing his name (and writing in general), but he has already made such great progress! I have been so blessed to be at home with him during his first week of school. It has been fun teaching him because I am learning so much more about Isaiah - things that often get overlooked. I'm not saying I don't spend time with my child, nor that I ignore what he is able to do, but it has been so nice to continue to watch him grow.




While he isn't quite used to the whole school schedule, yet, it has been a lot of fun. Today, for example, we imagined we were in the circus as tight-rope walkers. Isaiah has a vivid imagination that he has absolutely no problem sharing with others. The past few days, that imagination was put to use in new ways - imagining what we were learning about. I hope that he sees that school isn't just boring stuff, but it is fun . . . I hope we can keep it that way. =0)




This is a "bat-wheels" =0)


Well, I really just wanted to show you some of the pictures from this past week that didn't quite make it on the blog yet. I also have a song to share, too . . . but that will have to wait a bit. =0) It's nice to blog about something other than health and prescription issues! =0)


Speaking of health, things are about the same: the normal swelling, flushing, itching, leg pain, sleep issues, etc. Everything is pretty much "normal" . . . for us. =0) God is good and has been answering our prayers!

Until then, here are a few pictures of Brikey the (toitle) tortoise and a curious grasshopper. =0)




Oh, yeah . . . I forgot . . . the quote. It was from the Princess Bride when Inigo was excited to finally have the opportunity to meet the six-fingered man (who killed his father): "there will be blood tonight!"

Stay tuned . . . .

. . . for "there will be [logging] tonight!"

(Ha-ha-ha, chuckle-chuckle - yes, that was a spin off of a quote from . . . what movie, though? Can you guess?) ;0)

Wednesday, August 11, 2010

"A Good Play" - Pretending Time in Kindergarten!

(from A Good Play, by Robert Louis Stevenson)

We built a ship upon the stairs
All made of the back-bedroom chairs,
And filled it full of sofa pillows
To go a-sailing on the billows.

We took a saw and several nails,
And water in the nursery pails;
And [Isaiah] said, "Let us also take
An apple and a slice of cake";
Which was enough for [Isaiah] and me
To go a-sailing on, till tea.

Arrrrrrrrr! =0)

Tuesday, August 10, 2010

School Days (& Aquamarine)!

Look who is in kindergarten!



Isaiah had his first official day of school! I can't believe my baby is now in kindergarten! Time flies by so fast - cliche, I know. =0)


If you haven't been following the blog long, Isaiah isn't attending school in a traditional setting because he is at a very high risk for anaphylaxis (the doctor's words). Isaiah's doctors have stated that they do not want him in school until we can figure out how to prevent his regular occurances of anaphylaxis (and better manage the allergies). Since Isaiah has mastocytosis on top of severe allergies, his body is way too sensitive. Basically, the allergies irritate the masto, and the masto irritates the allergies - they sort of make each other worse than they should be. Since Isaiah's body can't handle all of the allergens introduced in a school setting (food residues, pet danders, temperatures, etc.), Isaiah is homeschooled through K12 (an online private school that also offers public schooling).


Anyway, Isaiah did such a wonderful job answering questions and following directions. He really enjoyed the online portion of school (more than the written portion . . . ). =0} He did write his name several times today, though! (I did forget to post that he wrote his name for the first time at VBS just a few weeks ago!!! . . . yes, I have a picture of it, too.) =0)


He did have a meltdown later today, but it was to be expected - his schedule changed. This child has always had to have a schedule and things had to be just right for him. I have to say that I expected it to happen earlier in the day, and it did look like that was going to be the case, but he handled today rather well. This evening, he just lost it! Poor guy. He'll do fine once he catches on to the new routine. Oh, yeah . . . and he hates all the writing, cutting, and sticky glue (don't touch the hands!!!). =0)



K12 is actually a really good program. The curriculum follows the regular public school curriculum, but it seems to cover a bit more. He did about 4 hours of school today, working on math, language arts, phonics, and handwriting. Those are actually going to be the subjects he does every day. Later, he will do science and history twice a week and music once a week (my favorite subject). =0)


On to Aquamarine . . .




(One of) My boy's favorite color(s) . . . =0)



(okay, so I just realized the fish, a few stars, and the stone on the helmet are the only things with aquamarine on them . . . at at least I tried) =0)

And he looks so stinking cute in it too! =0)



He's also wearing his new blue jeans from Soft Clothing . . . but only to carry on a tradition (sort of . . . a new tradition?). =0) You see, I wore a denim dress on my first day of school. Since Isaiah can't stand blue jeans, Soft Clothing had the perfect pair of denim pants for him (which he loves, by the way). =0)






Anyway, I just couldn't wait to share these with you. =0) I have more to post, but they'll have to wait for now. I'm pooped! =0)


As far as an update on the lab results and MRI . . . we are still waiting to hear. They have the MRI results, but they want to wait and discuss them with us after all the labs come back. This Wednesday will make it 4 weeks since the labs were drawn, and the labs were supposed to be back in 4 to 6 weeks. I'm hoping they come in this week . . . at least the MRI results can't be all that bad, right? =0)

Monday, August 9, 2010

SPLASH!


I just love this photo! =0) When I found out iheartfaces was doing a Surprise! photo contest this week, this photo popped into mind. =0)


This photo was taken a few months ago while we were in St. Pete for another appointment at All Children's hospital. He was having so much fun swimming that day! =0) It's the one thing he loves about St. Pete because it has nothing to do with doctors! =0)


Well, I chose this one because, yes, he was certainly surprised (he got more water in his face than he anticipated) and it really came out quite well! =0) I just love how his face is so clear in the photo.


I know I'm biased, but I just love that face! =0)

Wednesday, August 4, 2010

Soft Clothing Back to School Giveaway!!!!


I am so excited to share this with you guys - Soft Clothing is having a giveaway on school clothes and other items! If you have a sensory child, you know how difficult it can be getting (and keeping) them dressed everyday. Soft Clothing is a company that makes clothes just for kiddos with SPD (Sensory Processing Disorder).

If you remember a bit ago (April to be exact), Isaiah won a set of clothes from Soft Clothing from Hartley's blog. Isaiah loved the clothes! Of course, it was too warm for him to wear them at the time, but he will be able to wear them in just a few months (I hope . . . if it ever cools down, that is!). =0)

Anyway, we also recently purchased Soft Clothing's blue jeans - soft, non-blue jeans that look like blue jeans. =0) They're wonderful! Isaiah already likes the thought of not having to wear "icky" blue jeans this winter. =0)

So, what is in store for the winner? Just take a look:


1 Grand Prize worth over $250 will be given:

3 pack of Soft Sensory Tees in color/size of your choice
6 pairs of Soft Seamless Socks
"This is Gabriel Making Sense of School" by Hartley Steiner
Lands End Uniform Backpack
Classpack of Crayola Colored Pencils
Tactile Fidget
Desk Buddy Sensory Bar
6-Pack of Mead Spiral Wide Ruled Notebooks
4-BG Flash Drive
12-Pack of Crayola Washable Fine-Tip Markers
Peltor Junior Noise Protector Headphones
Classic Pencil Grip Pencil Sharpener
4-Pack of Sharpie Highlighter Pens
3-Pack of Pink Paper-Mate Rubber Erasers
2 Mead Classic Composition Books
Plastic Hinged School Tool Box
Max's Mud-Natural Sculpting Dough
Pocket Stixx Oral Motor Tubes

WOW! How awesome is that?

If you are interested in entering the contest, just click on the link and head on over:

http://www.softclothing.net/products/sale/giveaways/


And, I can't post without a picture (from April - I'll post the new jeans soon):

Thursday, July 29, 2010

Meet Brikey.


"B-r-i . . . k-e-y . . . T-o-r-t-oise" never mind, that soooo doesn't work.

This is "Brikey" . . . the toitle (the tortoise). =0)

Brikey is our unofficially adopted wildlife refuge tortoise (Isaiah named . . . it). You see, Brikey comes once a year to visit our "backyard" to build a nest. While Brikey is here, he (or she . . . kind-a hard to tell), comes to our back gate and waits for us to feed . . . it. =0)



Apparently, it's not illegal to feed the nesting turtles . . . I mean, tortoises. =0) In fact, the park rangers have even given us a list of approved foods for Brikey . . . of course, the list also says that the tortoises aren't pets, should not be embarrassed by being talked to like a baby, etc. Although, I must say, Brikey likes the attention of being "baby-talked" . . . spoiled toitle. =0)

Brikey knows when the humans are out and about and makes a "run" toward the fence to get his (or her) food. Brikey knows that if he (or she) stays at the gate long enough someone will bring watermelon, apples, grapes etc. to the fence for a free smorgasbord. And, of course, we oblige. =0) If you stand near Brikey long enough to watch him or her eat all of the offered food, Brikey will begin to chase your toes . . . well, at least it looks like Brikey is chasing your toes. I don't stand there long enough to find out - I like my toes and wouldn't want to lose them to a hungry tortoise. This tortoise will follow you - he (or she) demands food and is surprisingly fast! =0)


Well, that's Brikey. Brikey the turtle . . . tortoise . . . toitle. =0)

Monday, July 19, 2010

Over My Head

This photo was one of my favorites (yes, I have too many favorite pictures of Isaiah) from our Spring/Easter photos. My dad has been encouraging me to enter some of my photos, so . . . here it goes. =0)

The idea for this week's contest is to enter a photo that fits with the theme "Over My Head". Well, I went through all my photos (at least the more recent ones) ;0) and came across this one. The flowers are over his head . . . at least that's what he was trying to get them to do, anyway. =0)