Autism IS My Superpower!

Can you imagine hearing the words, "your child has autism?" In a split second, life - as you know it - has changed. For a different family, every 20 minutes, tomorrow will never be the same. In the United States alone, 1 in 88 children are diagnosed with autism (up from 1 in 110 children).

I remember hearing those words, though I already knew. I felt breathless. I cried the whole way home from the doctor's office. I called a good friend of mine, who also has a child with autism, and she reminded me of one very important thing: Isaiah didn't change - my perspectives had. Isaiah was the same little boy after the appointment as he was before the appointment - and that child was spunky, beautiful, brave, strong, quirky, funny, etc. In many ways, autism has made Isaiah who he is. Autism was already a part of his wonderful personality. Autism is his superpower. =0)

The reality is, though, some families facing this diagnosis do "lose" their children to the curtain or veil of autism. The person they were becoming seems whisked away and silence and blank stares sometimes replace their talkative and expressive selves. Don't get me wrong - autism isn't a death sentence and it's not the end of the world. But it does hurt to see your child drift or be snatched away - the child that you had known. In some sense, your child has disappeared.

Autism is one disorder that has fascinated me for years - I have had the honor and the privilege to work with several children on the spectrum over at least the past ten years. I love spending time with kiddos with autism - they are amazing and view the world in such a unique way. Sometimes, their perspective is scary and yet it can be beautiful. I love getting glimpses into the world as they see it - as my child sees it . . . even if it is sometimes perplexing. =0) I also love seeing their light-bulb moments, where they have learned something they have been working so hard on to master, and I love the challenge of helping them figure out and deal with the strangeness of "our world".

As I have mentioned in an earlier post, I am taking part in an event called Walk Now for Autism Speaks (it's coming up this Saturday). You have an opportunity to participate as well, either by walking with us or by supporting Team Super Nova (yes, Isaiah's self-proclaimed superhero name). =0) By participating in this event, you are helping to change the future for individuals with autism. By walking, you are getting us one step closer to finding what causes autism, how to prevent (and I use that word lightly) and treat it (through therapies and ways of teaching), and even helping them find their voice. It's not just about a cure (yes, there are some who long for a cure so they can hear their child say "I love you"), but it's also about helping families and individuals cope with autism in a very overwhelming world. Until we find the solution or the missing piece of this puzzle, we walk to find answers and raise awareness about autism.

It's not to late to join our team - either by walking with us or by donation (help us reach our goal)! =0) You can find links on my blog (you can click on any of the Walk Now links or the word "autism" in this post) and even here to my donation page. We have a wonderful team so far - but there is still room for you to join. Even if you cannot walk with us, your name will be added to a list of people who are walking with us by financial support. For those who have already donated - thank you, again!!!!!!

Light it Up Blue - April 2, 2012

www.lightitupblue.org

Okay, well, since it's late, this will be a very brief post. =0) In addition to lighting it up blue (as in lighting up the outside of our house blue for Autism awareness) I will also be walking on April 21st for Autism Speaks. It was an awesome experience last year and I am excited to attend again this year - hopefully, this time, with Isaiah (weather/outside temperature permitting). If you are interested in walking with me (you can join our team), contact me and I will give you more information. You can also support me as a walker - by clicking here: Team Super Nova. If you have trouble clicking on the link, just copy & paste/type in this address:

www.walknowforautismspeaks.org/tampabay/superisaiah

If you receive my posts via e-mail, and you happen to lose this post . . . no worries - I will have link on my page as well. =0)

=0) "Super Nova"

Wow, it has been a long time!

It's not that I haven't had anything to post about, it's just that I haven't had much time to sit down and actually write a post. :0}

Since October, Isaiah continued to have some form of a reaction on an almost weekly basis (sometimes less than a week would pass before another reaction). Each of these reactions

involved vomiting as well as fatigue, flushing, itching, leg pain, headaches, slurred speech . . . it wasn't fun and Zofran became one of our closest friends (as well as one of those putrid, pink hospital pans that Isaiah carried around with him). He even had one of these episodes on Thanksgiving Day.

On December 5th, we had another appointment with All Children's AIR clinic. We found out that the results were elevated - his urine histamine levels, as well as his norepinephrine and a few others. All of these were being looked at to try and determine if Isaiah has a tumor on one of his adrenaline glands (located on his kidneys). This type of tumor can exist for years before it's found. Since Isaiah's levels were

elevated, but not quite high enough to indicate the presence of this tumor, we had to repeat the test. This means more blood work and more convincing my son that peeing in a special cup/bottle is okay . . . as well as convincing him that it is okay to store that big, nasty bottle in the refrigerator (because cups and bottles are for drinking and pee doesn't go in them or the refrigerator). :0)

In addition to repeating the testing, the team of doctors decided to increase Isaiah's Zyrtec and Atarax - both are to be taken three times a day. His Flonase was also increased to an adult dosage to help him with his nasal issues. Of course, all of this means that we have to return to ACH's AIR clinic every six weeks for a while - except for the next appointment where we would go over the test results . . . that would be in January.

The increase in meds seemed to do the trick - he didn't have weekly reactions for a while until a week before Christmas and then another really bad episode the day before New Year's Eve (which required a trip to the ER). Thankfully, we had a reaction-free Christmas and enjoyed spending time with my cousin, Nancy.

When we returned to ACH in January, the doctors were still concerned that Isaiah's counts were still high - in fact, they had increased. STILL, they are not high enough to say that he has this tumor . . . which was now given a name - a pheochromocytoma. They took his results to endoc

rinology (literally a few steps down the hall from the room we were in - they share the same floor) to get an opinion. Endocrinology said that we didn't have to make an appointment with them yet, but they will follow his case in the event that further testing (scans) would be needed. At this time, the test will not be repeated, we will wait to see if things improve or worsen.

Our next scheduled appointment??? February. :0}

Somewhere in all of this, Isaiah had an appointment with neurology, had an ENG and nerve conduction testing that determined that Isaiah has peripheral polyneuropathy. What does that mean? Well, we still don't know, bu

t it explains the pain in Isaiah's legs and we were told it is more than likely progressive . . . and may explain Isaiah's hypertonia (over-toned muscles) in his legs and hypotonia (under-toned muscles) in his upper body. Isaiah is no longer considered to have cerebral palsy (spastic diplegia) but something else . . . which means more testing because neuropathy is a symptom, not a cause.

I want to say, very quickly, how proud of Isaiah I am. During all this testing (the ENG and nerve conduction testing, especially), Isaiah has not once cried or thrown a fit. The ENG and nerve testing are painful - even adult manly-men complain about how painful it is (one test involves long needles inserted into your muscles . . . both tests include electrical currents running between two needles/pads). The last bout of blood testing involved 8 tubes of blood being taken and one test being repeated. Isaiah is my hero.

A few weeks ago, Isaiah had another reaction. This one was different and was . . . well, puzzling. Isaiah became really aggressive - really aggressive. The words coming out of his mouth made no sense whatsoever and he was screaming. It wasn't just one meltdown (??? - I don't know what to call it), but two less than 5 minutes apart from one another and lasting about 20 to 30 minutes each (I have no idea how long I was holding him, but I was beyond exhausted when it was over). After Benadryl and other meds were given, he calmed down and acted like absolutely nothing had happened.

The next day, Isaiah was completely flushed - head to toe - and breaking out in rashes . . . then petechiae . . . then bruises. I have never seen anyone break out in bruises before. It was one of the weirdest things I think I have ever seen . . . and quite scary.

Again, meds were given and Isaiah took a nap. I did notify Isaiah's doctors, complete with pictures (one of Isaiah's doctors received the e-mail and called while on vacation in Vietnam . . . AWESOME doctors). No emergency appointment was necessary since we had an appointment just a few weeks away.

Now, on to yesterday's appointment . . . The neurology labs aren't back yet, so that wasn't discussed (did I mention that one of these labs costs $18,000?!? and it's not accepted by insurance . . . yeah, I'm still working on getting that one covered), but the neuropathy was discussed. We talked a little more about the strange episode a few weeks before and it was decided that we did not need any further testing at this point - Isaiah has had tests to look at clotting issues in the past, and nothing unusual showed up. However, Isaiah's meds were increased . . . again. Instead of Zyrtec, Isaiah was switched back to Xyzal (YAY!!!!) and now takes the adult dose 4 times a day. His Atarax dosage was also increased. We were told that if this does not work, we are looking at something far more serious for Isaiah. What that is, I don't know . . . I didn't ask. More aggressive treatment??? Maybe. A new diagnosis? Probably. It's just too much to think about at this point . . . I just want to at least get through these next six weeks before I think about

all of that.

By our next appointment with the AIR Clinic, Isaiah's neuro labs should be back . . . except for maybe the $18,000 one (it depends on insurance and the doctor's suggestions). And, yes, you are reading that correctly (no, it's not a typo) . . . the test costs $18,000 and my insurance considers it to be experimental and they won't cover it. The lab (which is in Georgia and the ONLY lab in the US that runs this test) does not accept Isaiah's secondary insurance. Whatever happens, hopefully, we will find some answers to explain the medical mystery of my son. These tests are not going to mean easy answers, but at least we may have better treatment for his legs/upper body issues that may also explain the odd symptoms we're seeing and reporting to Isaiah's allergists (yes, we know a lot of what is going on is outside of the allergy dept., but they are doing their best to help us get to the right doctors).

Our next appointment is in six weeks . . . I think it's March 29th (I'm so thankful we have the technology of cell phones equipped with calendars . . . calendars that notify us of upcoming appointments). :0) Right now, we are relaxing . . . and Isaiah is happily stimming (self-stimulating - the repetitive movements seen in people with Autism) over his Star Wars Lego video game (hey, he totally needs a break). :0)

I have another post to write about my dad . . . and, yes, it will be before several months have passed. :0}

Missing??? Not exactly. =0)

I just noticed that I haven't posted much of anything this year so far . . . sad, really sad. =0} So, this post is for those of you who still follow my blog and are absolutely curious as to what in the world is going on around here. =0)

First, the IEP frustration. To sum it all up (because it's a long story that still angers me a wee bit, to say the least), I was trying to get Isaiah on an IEP because, let's face it, he has autism and has difficulty understanding language. Well, the local school doesn't see it that way. The way they see it, he reads well and his comprehension doesn't count, so there's no need for an IEP . . . even if we are modifying his daily lessons and assessments because he cannot understand them! Ehem. So, another meeting is being planned to re-discuss the IEP and to at least go for a 504 (which wasn't even offered).

Second, Isaiah's psychiatrist and neurologist want more therapy. More ST, more LT, more social therapy, more OT, more PT . . . any way you look at it . . . more. =0) Isaiah is receiving some help, but it's not enough. He does need more ST and LT - he has difficulty understanding language and has some difficulty communicating (it can be difficult to understand what he's saying as well . . . he also has a habit of making up his own words). As far as PT, Isaiah's hamstrings are still really tight. His abductors are looser (hips), but his hamstrings haven't changed much at all. He has gained some upper body strength, but still needs to work on trunk control as well. Sooooo, more PT which is coming in the form of . . . PT (he is in dance and gymnastics to help, but it's not enough . . . though, it has helped things at least stay the same - without it, things would have been worse, so I'm told). Hey, he has actually learned how to run without a strange gait thanks to dance and gymnastics! =0) I'm so proud of my little man! This time, though, he actually has to go to the hospital for PT (no surgery, though - YAY!).

Third - Insurance. We're still having problems getting Isaiah's meds covered, but thanks to a new job for me, we have another insurance to help us out (Isaiah is on disability and is also now covered on my insurance policy). I also found out that disability (aka, Medicaid) will only cover 1 bottle of Xyzal every 365 days . . . with or without the other insurance. So, I am supposed to pay $70 a month for this med . . . in addition to the others that they are refusing to cover. To give you a little perspective, one bottle lasts us about 30 days . . . you can do the math, one bottle a year isn't going to help us at all. So, why Xyzal when there's Zyrtec? Xyzal works better. Isaiah had fewer weird reactions (red spots that turn to blisters and then look like bruises for weeks after).

Apart from all of this, however, Isaiah is doing okay. He hasn't had an episode of anaphylaxis since the last one in late February (literally, the last day in February). He did have quite a few rebound reactions that were less than pleasant (not that any are pleasant, but they weren't the easier ones to deal with). Isaiah has also had some interesting "minor" reactions as well, including those disco-light spots that appear and disappear . . . and reappear. This time, though, they stay there for a good bit, and if they are scratched, they turn into blisters that turn into dark red spots (they almost look like bruises) that don't go away for weeks. He has had the spots stay for a while, but never the blister issue with them. Weird, but not that surprising . . . Isaiah is, after all, the medical mystery as his local allergist likes to remind me of. =0}

The walk for Autism Speaks went really well - it was last Saturday. We were able to reach and exceed our goal, thanks to the generosity of many. Thank you, again, for those of you who supported us financially and even in spirit (as I know many wanted to donate, but were unable to do so). However you decided to support us, it was appreciated and loved - thank you! I walked the full 5K and enjoyed meeting so many people who were willing to walk in that hot, hot sun to raise awareness for Autism. It was inspiring and refreshing . . . even though a nice cool shower was needed at the end of the walk! =0) As for Isaiah . . . he didn't get to attend the walk because it was so hot. I really wished he could have been there - he would have had a blast! But, he got to swim in a nice cool pool while I walked in the hot, hot sun. =0)

On to my dad . . .

My dad has been having some health issues lately. When he works, he swells and is in so much pain he doesn't know what to do with himself. He is also having trouble with tremors - he shakes so badly at times. Sometimes, he is shaking so much he refuses to eat - what's the point if he can't get it to his mouth? He usually ends up dropping his fork and walking away from the table angry, frustrated, hungry, and confused. It's hard to see him go through this.

On top of that, his regular physician told him that his blood has thickened (from WM - the leukemia) and he is beginning to have nose bleeds - especially at night. He is always cold and is actually a darker color than he used to be (circulation issues).

Then, there are the memory issues. WM can cause Alzheimer-like effects, mentally, but he is going through testing for Alzheimer's just to make sure he doesn't have something else on top of everything else going on with him. He gets lost easily in familiar places, forgets things he has never forgotten before . . . has difficulty driving and remembering all the rules, forgets how to cook or that he has even turned the stove on, etc.

Please, please, please keep him in your prayers - for his physical and emotional health. He hates not being able to keep busy - he isn't physically able to take care of his lawn or do repairs on the house much less help anyone else out (for those of you who know my dad, this is torture to him). He won't tell you, but it's wearing on him - he hates to sit around and do nothing.

Lastly, my Uncle Ivan went to be with Jesus early this morning. Uncle Ivan is my dad's brother-in-law, but was like a father to my dad. If you were following my blog over a year ago, you may remember a post about my Aunt Sis - my dad's sister. Uncle Ivan is my Aunt Sis' husband. Like her, he had a wonderful heart. He was mischievous and was always in the mood to make someone smile or laugh. He was also devoted to my Aunt Sis, and spoke of her almost all the time after she passed away. Isaiah thought he was quite funny - they only met once, over a year ago, but Uncle Ivan had so much fun playfully teasing Isaiah and having Isaiah-friendly conversation. We're going to miss him - he was always the life of the party.

Blessings,

Kelly

Just a quck post . . .

to tell you about an awesome Spring giveaway from Soft Clothing! Remember this picture????

And this one???

Those are clothes from Soft Clothing - and only two of the times Isaiah was wearing their clothes (we get a lot of wear out of them). =0) We have several pairs of pants from them, and they are just as soft as the day they arrived in the mail. We love them because Isaiah loves them . . . and he actually keeps them on and doesn't fuss about them being "yucky" or "icky".

Aaaaand . . . he'll be wearing the soft denim pants (and maybe even a soft shirt) for his Spring dance recital. =0) (Keep a look-out for those photos) =0)

If you know a child who has sensory issues, or a child who just looooves soft clothes (who doesn't, right?), then take a look at Soft Clothing's site - they have quite a bit to look at including shirts, shorts, dresses, socks, and pants. They also have a list of resources on their site for sensory kiddos. While you're there, enter the giveaway, too! =0)

I am also writing a post that will be, uh, posted soon. =0) I just haven't quite gotten there yet . . . but it is coming. =0) For now, I have to go . . . we have a trip to St. Pete tomorrow for an upcoming appointment and a quick Spring Break vacation. =0)

We're Baaa-aaack! =0)

We're home (and so glad to be back, too)! I really like it in St. Pete, but the roads just are not marked well! =0)

The second appointment was, well, the usual. =0) Nothing really new to report apart from a new medication to replace the current one (which is causing a bit of an undesirable side effect that I won't go into). Nothing bad, just undesirable (not saying for Isaiah's sake). =0) He has already started the new med, and so far so good. He's not heavily medicated (definitely not a zombie) . . . in fact, he seems quite peppy . . . I hope he sleeps tonight! =0) If not, we can talk about that when we go back next month (new med = appointment in 4 weeks). It's a great time to go, though - it's Spring Break for us, so we can actually have a "vacation" of sorts.

It also looks like Dr. R is going to help us get some other therapies in place as well - OT, more PT, SLT . . . occupational therapy, physical therapy (his hamstrings are soooooo tight!), and speech language therapy. =0) This is a good thing - a very good thing. The sooner we get these things in place, the better the outcome for Isaiah.

For us, it has almost felt like we were on our own as far as providing all of these services - finding the providers, finding the finances, etc. I'm glad we have their support, even if they are in another county (3 hours away). I know that the insurance will cover these therapies (in theory), it's now just a matter of who will provide them and how. We are also in contact with CARD who will also be helping with all of this . . . and it's completely paid for with no expense to us.

We also signed up for a walk in Tampa! =0) We're going to be part of Team Rothman Center (long and awkward name, I know) in the Walk Now for Autism Speaks!!! The walk is Saturday, April 16th and will be in Tampa . . . yes, that means we'll more than likely be over there again. =0) It's okay, though . . . it's a Saturday.

Anyway, please support us in the walk (even if Isaiah is unable to attend because of the heat). If it's cool enough, Isaiah will be there with his stroller, frozen ice packs, and cooling vest. =0) If you look on the right side of our blog, you'll see two boxes - either box will take you to our personal Autism Speaks! page where you can make a donation to support us. I know I only set a goal of $150, but I'm sure we can reach that and go beyond! Please donate to help us solve the puzzle.

RDD (Rare Disease Day) is just a few days away now, too. If you don't want to donate to our walk (and you're in a donating mood), =0) you can donate to Masto Kids to help us find a cure for mastocytosis. Either way, your helping to fund research and awareness (more awareness means more funding for research). Both autism and mastocytosis have affected our family and finding the cure/effective treatments/answers are just as important to us.

Blessings!

First of Two Appointments

We're back in St. Pete at All Children's Hospital. Isaiah had his first appointment today at the AIR Clinic (we finally scheduled his appointments over here next to each other so we could accomplish the appointments in one visit). Tomorrow, Isaiah has his appointment with the neuropsychology clinic.

Really, there is nothing new to report. We may have to have his IgE/RAST testing redone, considering they were not back yet (they should have been since they were done in December). So, more than likely, we will have to have them repeated. The RAST testing just gives us an idea of how sensitive Isaiah's body is to allergens - mostly food allergens, but there are a few environmental allergens listed as well. Last year's test didn't reveal much of a change - Isaiah's total IgE was well over 2,000 then . . . it should be much less than that . . . less than 60 would be nice. The higher the number, the more sensitive he is. He also had more allergens that were above the scale - the highest they can measure is 100 . . . Isaiah's counts for milk, wheat, soy, peanuts, and eggs were well over 100. As far as environmental allergens, cats and dogs were around 90/98.

Another count we'll be watching for is his eosinophil count. Two years ago, it was at a 9. Last year, it was 11. Again, the higher the number, the more reactive Isaiah's body will be. He already has eosinophilia and he is not too far from having hypereosinophilia. Basically, that just means that without God and the meds, Isaiah would have organ damage. With hypereosinophilia, it won't matter if Isaiah is on medications or not, his body will attack his organs. We're praying this count stays down because that is just a scary road to travel down.

As usual, we got the talk of medications and their long-term side effects. I was expecting that, but it's always just as frustrating to hear. Yes, the meds can have long-term side effects and some of the meds haven't really evaluated long enough to know the full extent of their side effects, but . . . it's better than being off the meds at this point.

What I am sure of is that God is in control. Whatever the outcome, whatever the future brings for Isaiah and our family, God is in control and will use the situation to bring glory to His name - and to that I say, "amen!" If it were up to me, I would want Isaiah miraculously healed right now - and that would be awesome! That can still happen. Right now, that isn't the case (at this point in time). God is doing what He sees fit, and that is walking us through this. Scary? Ummm, YES! Comfortable? Absolutely not. Do I find peace? Yes. His knowing where we're headed is better than my knowing where we're going. =0) My comfort is found in knowing He can handle this . . . He is the creator of the universe, after all.

Tomorrow is another appointment . . . but we usually don't get too much new info. at these appointments. =0) Sometimes, I wonder, "what's the point in driving 3 hours to hear about nothing?" Well, I guess there is a point and I'm sure if I had any new concerns or questions about my son and autism I'd be more than grateful for the appointment. =0) I'm grateful for the appointment, by the way . . . just being silly. =0)


I will post, again, tomorrow . . . especially if we get to do anything exciting . . . like the Pier. =0)

By the way, Rare Disease Day is coming up - Monday, February 28th!!!! Wear your spots in support and to help raise awareness for Mastocytosis!!! =0)

Long time, no post! =0)

MERRY CHRISTMAS & HAPPY NEW YEAR!!!!! (a wee bit late) =0)

Okay, so I know it has been a while since I posted last. A lot has been going on - our schedule is as hectic as ever! =0) Isaiah has PT twice a week (in the form of dance and gymnastics . . . but its intent is a fun form of PT . . . PT=physical therapy). In the middle of the week, we have Awanas, which is sort-of like a social group as well (at least, that's an added benefit). =0) He also has tutoring 3 times a week . . . then, you add my schedule in there and our weekdays can be crazy to say the least. There's never a dull moment around here. =0)

Outside of that, you have doctors visits and interesting conversations (read "arguments") with the insurance company who decided that we can pay - in full - for Isaiah's prescriptions because they're antihistamines . . . yeah, even if I had a million dollars, that would be expensive (three of the prescriptions rang up to $1,500). Thankfully, God had another option in mind - a mostly unmarked (meaning, no name of a company anywhere on the card) prescription card that miraculously covers all of the meds. God is truly awesome! We have Isaiah's most costly prescription back and just in time before a major reaction (he is still coughing from being off the med for over a week). Oh, and he's not having as many meltdowns now that he is back on it, too. =0) If that doesn't scream necessity, I don't know what does.

Apart from that, there's not much to report . . . oh, we also lost Isaiah's local allergist because of insurance issues. =0( She was an awesome doctor, too . . . as soon as we get this stuff straightened out, we're back in her office! What's the point in having more than one allergist??? One is local (all of 10 to 15 minutes away because of traffic lights and in the same town we live in), the other is 3 hours away (plus tolls and hotel room rates - RMD House only takes hospital patients unless they are clinic patients receiving treatments) . . . and Isaiah's case is just that perplexing that he needs more than one doc on the case. Plus, they seem to help each other treat Isaiah and the local allergist can see Isaiah in an emergency (which was nice). Now, we have to drive 3 hours to the AIR Clinic (Allergy/Immunology/Rheumatology Clinic) in St. Pete for emergency appointments because the pediatrician has no idea what to do with Isaiah.

As far as lab results, the 5-HIAA lab test came back normal. I didn't quite explain this test, but it is basically looking for a tumor. His allergists in St. Pete were wondering if maybe the extra histamine running around in his body (and increasing IgE and eosinophils) were caused by a tumor - a tumor that had already metastasized (carcinoid syndrome). This type of cancer (though cancer) is highly treatable (curable) and would have meant that Isaiah could come out of his bubble once the tumor was removed/blasted. So, it could have been a good thing - at least in the sens that Isaiah's counts would have come down and he might be able to try new foods. The bad side being it's cancer, which would mean surgery, chemo, and radiation. Thankfully, that's not the case. However, we still have no answers as to why Isaiah's counts are getting higher.

Isaiah was also tested again for hereditary angioedema (HAE). It would explain the random swelling and anaphylaxis in the middle of the night, but it still wouldn't have explained everything. In fact, it would be just as frustrating seeing as there is still no cure and treatments are the same as we are already doing . . . with a few changes here and there. It still wouldn't explain the IgE and eosinophilia. That test also came back (as before) normal. His liver enzymes are a little off, but not enough to say that he has HAE.

Then, there was the CT scan (after all, Isaiah had a fever for 4 months!!!!). The CT scan came back with a sinus infection (one that just didn't show up on the outside with a runny nose or anything) and significant sinus disease. Basically, Isaiah's fever was caused by the sinusitis (and Masto . . . cuz it does that) and is on Levaquin for 14 days to treat it. The sinus disease just means that his sinuses are not happy. They are swollen, irritated, and the cilia (little hairs in your nose/sinuses) are not working properly. His sinuses are damaged (including cilia), but they aren't to the extent that he would require irrigation (a tube stuck into his sinuses to wash them). He is on a new nasal spray to help the undamaged cilia to heal and work properly.

Apart from all of us getting some kind of virus (yes, I managed to bring home and infect our entire household), we're all doing well. =0)

Of course, there is my dad. He is in pain and cold. He has been shaking quite a bit (so much so that he can't write), so the doctor has taken him off of one of his pain medications to see if maybe the med is causing the problem. Of course, that's not the end of the story . . . we're much to complicated for that. =0} If my dad hasn't already told you himself, he is being tested for Alzheimer's. This has been a consideration in the past, but because he is having progression of symptoms (and worsening of certain symptoms), his doctor is revisiting this idea. Of course, it could just be progression of Waldenstrom's, but the doctor just wants to make sure. I will keep you updated.

On another note . . . it's almost time for Rare Disease Day, again! February 28th is Rare Disease Day. Last year, we were helping to raise awareness for mastocytosis by wearing our purple and polka dots. For Isaiah, we made a shirt using his ideas for things with spots (by the way, most children with mastocytosis have some form of spots . . . Isaiah is one of the rare ones who has no spots). Nai-Nai and Ye-Ye joined in last year, wearing ribbons to support MastoKids (a wonderful support group who have been an invaluable resource of information and encouragement to us). Just as last year, we'll be sporting our spots. =0)

Mastocytosis isn't the only rare disease in our household, though . . . apart from Autism (which is somehow listed on the RDD website) and anaphylaxis, Waldenstrom's Macroglobulinemia is also a rare disease . . . we just don't have a color to wear to raise awareness for that one. =0}

Sorry, I couldn't resist . . . I just love this picture of her! =0)

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

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)

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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!!!)

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.

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

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!"

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)

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):