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

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!

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)

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!

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!"

MRIs & ER Visits

Sorry if you are reading or getting this twice . . . I accidentally clicked publish and I wasn't even finished. =0}

To start off, the MRI went well. Isaiah handled the sedation well with few complications (he had a bit of an issue with coughing and itching as well as low blood pressure . . . and he needed a bit of oxygen to keep his sats up), but no anaphylaxis!!! God is so awesome!

After the MRI, we stayed close to Arnold Palmer . . . just in case. We had the privilege to stay in the Ronald McDonald house next door to the hospital with some amazing little people. It was heart-breaking, yet so inspiring, to see so many loving families with such brave children. Hearing some of their stories just broke my heart and made me so thankful that we do not spend more time in a hospital or in doctor's offices than we do.

Since Monday's sedation and MRI, Isaiah has been having a few speech and appetite issues. Basically, Isaiah isn't saying his r's at the end of his words and he's not eating very well. While the speech thing is cute, it's totally not Isaiah. R's haven't been that much of a problem for him, until now. Hopefully, it's just a fleeting thing that will go away quickly. The appetite thing, well, that comes and goes . . . so it's really not all that new nor troublesome at this point. However, the child usually eats very well when he feels good! =0)

On Wednesday, Isaiah's neurologist called to tell us that we needed to go back to the hospital and have the labs redrawn!!! The labs had to be drawn while fasting and they needed quite a bit of blood (and convincing this child to pee in a cup is like making a donkey walk in the direction you want him to go). =0} So, the labs were redrawn, much to Isaiah's dismay (poor guy!), and now we wait for a few weeks for the results to come in - the MRI results should be back sometime this week.

Everything was going well until Saturday. Isaiah was sitting in a chair, watching a movie, when I noticed that he was itching a lot. As I got closer to him, I noticed that his lips were a tad swollen and he had a rash on his face. Within 5 minutes, we were out the door with a child who had turned dark red (almost purple) with a rash everywhere, swollen and blistered lips, slightly swollen tongue, and itchy throat.

At the ER, the triage nurse took one look at him and said, "has he been out in the sun for too long?" He was so red! When I explained what was going on, we were whisked to a room and Isaiah had an IV placed and he was hooked up to the hear monitor. The triage nurse did an excellent job getting things moving along quickly and making sure everyone was doing the job they were supposed to be doing (thanks, Tracy's hubby). =0)

He is doing well, now - sent home after observation, as usual. He is still talking a little funny (still has problems with that r), and has flushed a few times, but he's doing well.

God is faithful, even when things don't seem to be going in the direction we would want them to go. God reminded me of the whole "walk by faith and not by sight thing" over the past few weeks. Regardless of how things look, we need to have faith that things will be okay. When you look at a forest, do you only look at a tree? How about a leaf? God sees the big picture, even when we can't. He knows the why's and why not's. As much as we want to know those answers, sometimes we need to just have faith in His knowledge and let go - He's got it under control. Worrying won't do a bit of good - it won't allow us to get any closer to the answer (sometimes the answer can even be clouded by all that worry). Don't get me wrong, I'm still human and a mother at that!

Whatever God's will is for Isaiah's life, I know that it will bring Him glory. Honestly, that has been my prayer for Isaiah since I knew he existed - that he would be used by God, and that he would allow God to use him. These tests aren't pointless, but whatever the outcome, God's already using it to bring glory to His name.

How I pray for my life to do the same - not my will, but His - for His bigger purpose and plan, not just my little leaf point-of-view.

I will have more to post later - good stuff . . . school stuff. =0) I'll give a little hint . . . "aquamarine and green." =0)

MRI - brace yourself, long post. =0}

Well, to catch some of you up who haven't been on Facebook . . . =0}

Isaiah had an appointment with a neurologist this past Thursday. At the appointment, the doctor noticed (as did I) that Isaiah has no reflexes in the lower half of his body. He tried several times to get Isaiah's muscles to respond, but to no avail. Upon further examination, the doctor noticed that Isaiah was inflexible (with limited flexibility in his ankles) and his hamstrings are tight. We had noticed that Isaiah walks on his tiptoes, and he didn't begin to crawl because of his stiff little legs, but had not really thought too much about it . . . now we know.

However, the doctor (and I) want to know why. Especially since his upper body is so loose and he has less muscle tone in his upper body. He is also looking for causes of Isaiah's autism symptoms. Basically, these tests will give us a further diagnosis for Autism (high-functioning/Asperger's). We will also be seeing a geneticist sometime in September (there was an appointment for this week, but . . . I'll explain in a minute). =0)

However, there is a bit more than that going on. Generally, with autism, people are flexible and loose (like Isaiah's upper body) - they don't have the tightness and loss of reflexes. So, that adds some new speculations as to what's going on with Isaiah. The two possibilities are encephalopathy (in short, a form of brain damage) and spastic diplegia (a form of Cerebral Palsy). Now, I know that Isaiah is the same child I have always loved - the same with or without these tests. However, I would like to know how to help him - hence the testing.

That brings me to the testing. =0) Isaiah is supposed to have an MRI . . . with sedation (along with blood tests being drawn during the MRI). If you have been following my blog for at least a year, you know that the last time Isaiah had a procedure with sedation he anaphylaxed twice in one week - the episodes were 3 days apart, 24 hours after the procedures. We still don't know if the anesthesia or the procedures (endoscopy and sigmoidoscopy) caused the anaphylaxis.

Initially, Isaiah was to have the MRI today at the local hospital. However, at the "pre-op" physical yesterday, Dr. B. decided that it was just too risky to be done there. I can tell you, I shared the same sentiment. =0) So, he had the MRI rescheduled at Arnold Palmer - the same hospital that Isaiah had the last procedures. It's a children's hospital and a trauma hospital at that. I am relieved and a wee bit freaked out at the same time - his exact words were, "because of the risk of severe or fatal anaphylaxis . . . " Ugh, no matter how much you know that anaphylaxis can be fatal, it's still hard to hear . . . of course adding on top of that the speculation that your child has some type of brain damage doesn't help . . . and the whole eosinophilia news (I was told that eosinophilia can cause organ damage and that Isaiah's body is just attacking itself - that was in the conversation with the allergist . . . it just took a bit to sink in).

So, what caused this suspected brain damage? No idea. Maybe the multiple times Isaiah has anaphylaxed in his life, maybe his large birth weight, or the fact that something may have actually gone wrong during labor - there's no way to tell right now. He's the same Isaiah I have always known, so I'm not mournful. I just want to know what it is and how we can help him. Some of his leg pain could be coming from this - I just want to make it stop for him (he hasn't been sleeping well the past week and some change because of leg pain).

If you can't tell, I'm honestly just worn out. I'm not necessarily sad, just tired. Not being able to make his pain stop makes it worse . . . and knowing that we still don't have all the answers for all of Isaiah's health issues bothers me.

I know that God is in control and that He is watching out for Isaiah in ways that I cannot. He knows all the answers and understands Isaiah's body better than I can. I'm so glad that I can rest in Him, confident that He's able to take care of all of this. I am just so grateful that He has blessed me with this little guy and given me an opportunity to learn more about how to depend on Him.

I will keep you posted, as always. =0) As for now, Isaiah's appointment is in August, but we are on the list to be called if there is a cancellation . . . talk about being ready at a moment's notice. =0) Please pray that we can get our appointment sooner and that everything goes smoothly - the waiting can be rough. =0}

Oh, by the way . . . Isaiah, my baby, will be turning 5 on Friday (at 6:23 pm, to be exact)!!! =0) Trust me, there will be a post. =0)

Quick Post . . . =0)

I know, you're thinking, "quick post? Yeah, right!" =0)

Maybe you're right . . . I should think realistically. =0)


Anyway, Isaiah had an appointment in St. Pete this morning. We started our trip yesterday and encountered severe storms in Orlando - almost constant cloud-to-ground lightening, blinding rain, loud thunder, aquamarine patches in the sky, hail . . . but we arrived safely without incident (God is our protector).

The Allergy/Immunology/Rheumatology Clinic shares a floor with Nephrology, Hematology, Oncology, and Nutrition at All Children's. We usually see some really sick kiddos there - it always tugs on my heart and makes me thankful that Isaiah is in as good of health as he is in. Seeing their faces just breaks my heart. One particular case, today, just really got to me. Isaiah did not want to be there, today - he doesn't want any more sticks. =0( So, as we were going back for the appointment, he was saying, "NOOOOO!" One young lady (who was maybe 13 or so) commented that she didn't blame him, she didn't want to be there, either. She had come out of remission and was "losing" her battle with cancer. It broke my heart. I wanted to give her a hug so badly and just make everything okay for her. Thankfully, she does know Jesus - I know that He can make everything okay for her. Better than that, He can make everything great for her. Until then, I pray that she doesn't have to feel pain and finds peace, comfort, and healing through Him; the only one who can provide it for her. I didn't catch her name, but please keep her and her family in your prayers - God knows who she is and that's the important part.

Isaiah is doing well, just the usual flushing and such (and not sleeping, leg pain, the usual for him). He has developed petechiae, again. I noticed it yesterday morning and it has gotten worse since then. The doctor saw it and has ordered the usual blood test just to check. He has quite a bit more of it than he did last time. He has patches on his tummy, on his shoulders, neck, under his arms, on his upper arms, upper legs (with newer spots on his calves), and his tushie. At least it's not itchy like eczema. =0) While the doctor was examining Isaiah and his dots, he told her, "you have the peh-tiki-way on your back!" =0)

Because of all the swelling that Isaiah has been having, she also ordered a test just to check his kidneys . . . just to make sure they're working the way they're supposed to. He has never had a UTI or anything, so I'm sure that one will be just fine. She just wants to make sure - she's rather thorough.

Apart from that, it was just a regular appointment at the AIR clinic (I think that's so funny - Allergy/Immunology/Rheumatology = AIR). =0) The doctor finished the documents needed for school this year. Just in case you missed the school discussions, Isaiah's doctors do not feel that school is the best option for him right now - at least the going to the building part. Basically, the school district needed the doctor(s) to fill out a form stating why they want him on homebound school for the next year. All of that is completed and ready to be sent in. =0)

I have already started the sign-up process for K-12 (I was worried that homebound, which offers a teach twice or so a week, wasn't going to be beneficial for Isaiah). K-12 seems to offer the best option - allowing Isaiah to work on a computer for some of the time, meet with a teacher every day (online - web cam), and learn on his level and at his own pace.

Well, I think that's all for now . . . it's beginning to storm outside, again. =0} Ah, life in Florida during the summer. =0)

I really haven't fallen off the face of the earth =0)

And it has taken almost a week to write this post! =0)

Things have been, well, busy here. =0) Nothing out of the ordinary, nothing bad, just busy. I feel like it has been a long time since I have written anything, so I figured now would be a good time to post something. =0)

The summer temps have come to FL (except it cools down nicely in the evening), which brings the lovely smell of the ocean, the beautiful flowers, and (unfortunately) reactions for Isaiah. =0( While most people are spending more time outside to get over cabin fever, we get to spend our time indoors avoiding the heat, mosquitoes, and all the issues that come from it. =0}

Anyway, since Isaiah's reactions have come back again this year, we canceled our summer vacation. Oh, how I need a vacation! It's okay, though. We'll get one eventually, but it will be when things cool down again (I'm thinking sometime in November???). Even going north during the summer won't give Isaiah much relief, seeing as the traveling can be just as bad. Not only that, but it is difficult to find hotels that are within our price range and that do not allow pets (pets in a room = reactions, including anaphylaxis, for Isaiah).

The heat has caused some issues for Isaiah that have come very close to an ER visit. A little over a week ago, we decided to watch the shuttle launch. We had planned to wait out our time in Walgreen's, but since we didn't get to leave early enough to get a parking space, we had to walk to Walgreen's . . . which is about a mile or so from our house. Since Isaiah has a cooling vest and a stroller, I figured we'd be okay to get there and cool off inside Walgreen's. I was wrong - Isaiah began flushing and became lethargic (a flashback to last summer) even with the vest. He did see the shuttle launch, but he could have cared less. I felt so bad for the little guy - he LOVES the shuttle launches (he would so be an astronaut right now if he could be). Just this one outing has brought on several days of itching, increased flushing (more flushing than we've had since it started warming up), more than usual swelling, a purple spell, headaches, body aches, sleeplessness . . . grrrr, those stinkin' mast cells! God is awesome - we have not had an ER trip since January/February . . . apart from the nose thing =0}, but that was not for anaphylaxis (God is good)!

We also had a bit of an issue with the Zyrtec/Tylenol/Benadryl recall. Yup, all three of them were an issue for us. Isaiah had almost taken 2 bottles of the recalled Zyrtec (we go through a bottle a week), a bottle of Tylenol, and a good portion of the Benadyl. Good thing it was a "voluntary" recall. =0/ The company did reimburse us for the meds, but we needed to find an alternative for Isaiah. The Benadryl was a no brainer - just use the non-recalled Benadryl. The Tylenol was easy, too. The Zyrtec . . . not so much. Since Isaiah can't swallow tablets yet, and the generic brands have ingredients Isaiah is allergic to, we had to find something to give him that would be safe for him. So, we now use Xyzal . . . which the insurance won't cover, but it's at least cheaper than buying 4 bottles of Zyrtec a month. =0) Xyzal seems to work almost as good as Zyrtec, too! (YAY!)

Isaiah also registered for school . . . MY BABY IS GROWING UP!!! I have mixed emotions about school and Isaiah - I'm excited he has reached another milestone in his life, yet sad that his schooling is "modified." Because of all the allergy issues Isaiah has (and his very high risk for anaphylaxis), his doctors feel that it would be best for Isaiah to receive schooling at home. Since he is too advanced to hold out one more year (not that it would make that much of a difference without God's intervention), we have to put him in some form of schooling. He really wants to ride a big yellow bus, but even if he could go to school, we live too close to the school . . . he would have to walk (which means, we would have to drive him to school in the morning).

We at least have a choice between home bound (where a teacher comes in twice or so a week) and K12 (online public school - 5 days a week). So far, it seems that K12 will be the winner. =0) We can also tweak the program for him so that he doesn't get bored - that's the part I like. It's computer-based, but it also includes hands-on activities that the school district sends to you. It really looks like a neat program . . . and Isaiah will still have Awanas . . . and hopefully some other kind of social activity (like gymnastics or something).

On to Mother's Day . . . we had a good day. We relaxed, we played, we chatted with my cousin and his girlfriend who came to visit (yes, Bill, I posted your picture . . . see 2 paragraphs below). =0) Which brings me to the pictures for Mother's Day . . .

Everyday is just so much brighter when I see that smile and those sparkling eyes! I just love being a mommy! =0)

Since then, we have had fun with Bill and Elma (my cousin and his girlfriend). It was nice to see them - I haven't seen Bill in quite some time . . . probably 10 years or more? I even got to introduce him to Madea. =0) Yup, we have yet another Madea fan in the world. =0)

(He sooooo did not want his picture taken . . . but no one escapes my camera!) ;0)

(She didn't know I was taking her picture) =0)

As far as my dad . . . he's doing okay. He found out that he had taken too much of one of his medicine (he was taking twice the amount the doctor prescribed) . . . which explained why he was sleeping sooooo much. God protected him and is fine now that he stopped taking too much. Of course, now he is out of it until sometime next month. =0/

He has been having more problems with his memory lately, as well. He is getting lost when he drives . . . and for a person who used to be a good driver, he scares the bejeepers out of me everytime I'm riding in the car with him. This past week, instead of driving with a green light, he sat there . . . with cars behind us . . . and didn't move. Poor guy. Then, he almost ran a red light at another light. I'm not writing any of this to make fun of him, though we try to make light of it with him. It's more or less just hard to see this happen to him - and he notices he's not the same and takes it quite hard. He knows it's not just "getting old" and that this leukemia is just trying to make itself known.

My dad also got a new cell phone (a free upgrade with the account), which has been a trip! =0) He hates technology . . . and now he has a smartphone . . . and not just any smartphone - a touchscreen Android phone. =0) It has been so much fun watching him get used to the thing. Fu-u-nny! If you know him, you'll have to ask him about it. =0)

We're still standing in faith, as always. Apart from God, I don't know how anyone can deal with problems without going completely insane. We know that God is awesome and able to do the impossible. He not only hears our prayers, but He also answers them. God is faithful and keeps all of His promises and covenants with us. It's so wonderful to serve a God like Him - glad there isn't any other.

Until next time . . . . =0)

What have we been up to???

Well, after a busy 2 weeks with all sorts of appointments (not necessarily doctor's appointments, though they were a large portion of them), we have finally gotten back into our usual routine . . . mostly. =0)

Starting with Monday, 2 weeks ago, I had my appointment for my ear . . . it's healing well. Still can't hear very well, but it's getting better at least. =0)

On Tuesday, Isaiah had his appointment in St. Pete - the check-up at the Rothman Center. That went . . . as expected. =0) Basically, the doc wants Isaiah on the bigger dose of the med, but I said it's not gonna happen . . . he sleeps way to soundly (which is dangerous because Isaiah usually has his episodes of anaphylaxis in the middle of the night). S0, the doctor recommended giving half the dose in the morning and half at night . . . ummmmm, side effects do include an issue with overheating . . . dare I mention last summer? =0) So, I'm thinking that rispridol may be a thing of the past. Isaiah's ped didn't like the idea of rispridol anyway, so we are going to make an appointment with a doctor he recommended that is 20 minutes away (as opposed to 3 hours). =0)

Anyway, back to St. Pete . . . the doctor was still trying to get all of the labs back, so she had us wait in the waiting room while all the faxes were coming in. After about 30 minutes, we were handed a few papers and told to make an appointment to see the pediatrician as soon as possible. WHAT? I can't say that I didn't freak out a little . . . especially while I had time to think about that proposal . . . so, on Wednesday, I made an appointment for Thursday (we were travelling 3 hours home from the appt. on Wed.). =0)

On Thursday, we went to see the ped. He said that he saw Isaiah's file and was thinking, "Oh, no. What's going on now?!?" =0) Well, after reviewing the labs, the doctor looked at me and said, "I didn't see you." What? You see, everything is "fine". Basically, Isaiah's triglycerides are high and some of his other counts are off a bit. Considering it wasn't a fasting test, and Isaiah's extremely restricted diet, there's nothing to worry about. He said that we'll watch the counts, but there's nothing we can really do about it all . . . not now, anyway. If they get worse, we may have to look at new meds or something, but there's nothing that can be removed from Isaiah's diet. If we removed anything else, Isaiah would need a feeding tube, which is a HUGE issue by itself. So, we can't do anything, they weren't that high - don't worry about it. Ehem. =0) And, as far as the doc was concerned, he didn't see us and no bill would be sent to the insurance companies. =0)

The rest of Easter break had other appointments going on and all the preparations for Easter (including ripping and downloading songs from Isaiah's CDs to his mp3 player . . . his Easter-therapy present). =0) Can I say just how long that takes? Sheesh, I'll use a CD player any day!!! =0)

Oh, yeah . . . and an impromptu "photo-shoot"/play date with our neighbor's grandchildren (whom they hadn't seen in a little over a year . . . long, sad story, but I was honored that they shared a bit of their time with us).

Somewhere in this break, Isaiah won an outfit from Hartley's Life With 3 Boys (I will send and post pics soon, I promise!) =0) and also won the RDD (Rare Disease Day) contest through MastoKids (thanks everyone!!!). Isaiah was sooo excited - he had no idea what he had won, he was just excited that he won! =0)

That brings me to this week. More specifically, yesterday. We had our usual "meeting" with Isaiah's local allergist (she's really just there for whatever we may need in between our appointments with All Children's, so she needs to know what's going on). Everything was going smoothly - Isaiah was even calm, thanks to the mp3 tunes!! =0) As we were leaving, Isaiah had a spill in the parking lot . . . it was Isaiah vs. the corner of the sidewalk. The sidewalk won . . . sort of. =0)

As I was putting Isaiah's bag in the car, Isaiah decided to go toward the front of my car . . . back toward the office, where he fell, hitting his nose right on the corner of the sidewalk. When I turned around to see what happened, I saw Isaiah laying on the ground . . . face down, with part of his head on the sidewalk. When I picked him up and turned him around, he began crying (thankfully), and I noticed his nose was flat! It really didn't take very long for it to swell up, though. =0(

To make a long story short, Isaiah had trouble staying awake, so we headed for the ER. While we were there, Isaiah was having no part in trying to stay awake. The doctor thought his nose was broken and decided that he needed to have x-rays done, as well as a cat scan because he was so groggy. Turns out, the shock of it all made him sleepy and his nose . . . it's not broken! Thank you, God!!!! God protected Isaiah - it looks much worse than it is. We still may need to see an ENT, but at least we have x-rays out of the way. The doctor kept Isaiah at the hospital for a little bit (to watch him, as he tends to have swelling issues and she was worried he may have an anaphylaxis episode), but (again) God protected Isaiah and we left without further incident. =0)

For now, his nose is swollen and he has 2 black eyes to go with it. Still no major reaction (thank you, Jesus!!!).

Oh, yeah, Isaiah is on a regimen of antibiotics for an infection in his lungs . . . he hasn't seemed very sick, apart from a lingering cough (random, low fevers, but nothing completely unusual). It's not really serious, but the doctor just wanted to make sure we got it cleared up quickly before his body decides to overreact. It should also help with the rashes (eczema & other allergy rashes) that Isaiah has on his arms, legs, torso . . . tush . . . okay, so, everywhere - it's that time of year, again.

On a lighter note =0), Isaiah finished his Awana Cubbies book this past Wednesday! That means Isaiah knows (and still quotes) 28+ Bible verses (I think 34?)!!! I'm so proud of him!!! He's such a smart little guy, and has worked so hard (or shall I say effortlessly) on these verses. Even while he's playing, he quotes his verses. I love it! We have already started on the second book, so this Wednesday, he will share 4 new verses with his Cubbies leader (at his request). =0)

Did I mention the little stinker can read? He can. He can even read words like Easter and Christmas . . . all this found out yesterday after he decided to wake up in the hospital. =0) I thought he was reading . . . he was just hiding it! =0)

I'll post a video of Isaiah saying a few of the verses a tad later. =0)