Yeah, yeah, I know . . .

. . . it has been a while since I have blogged. =0) Things have been busy around here, and I have been having so much fun with my little man that I sort of forgot to write! =0)

Lots of things have been going on here. So, I'll start with Thanksgiving - we had a wonderful day. Isaiah had a wonderful meal - pumpkin pie, apple pie (there's a story in itself!), turkey, mashed potatoes, sweet potatoes, corn, stuffing . . . all Isaiah-safe, too! =0) We even put up the Christmas tree (one of my favorite parts of the Thanksgiving holiday). It was very relaxing and a completely needed break. =0) We didn't have our "hup-bol" (football) fest like we did last year . . . but that's because my dad, brother, and one of my nephews was on the roof putting up Christmas lights. =0) My other nephew and my son??? Well, my younger nephew was trying to keep Isaiah occupied and off the ladder! =0) Oh yeah, and another Thanksgiving tradition is visiting Santa the following day. =0)

As far as Isaiah's health, he's doing good right now, for the most part. He hasn't had an ER visit, but this is usually his "quiet" time. He has had the usual "in-between" reactions, though (swelling, flushing, speech issues, bone pain, etc.). The normal for us just keeps on changing around here. =0) As far as the lab work Isaiah had done about 2 1/2 - 3 weeks ago, they still haven't come back yet. My guess is that it's just the types of tests they had to do - maybe they just take longer to come back. Who knows? I'm going to call tomorrow, because I'm very curious as to what they've found . . . or not found.

Unfortunately, Isaiah had more labs done today . . . he has petechiae on his chest and back. The stuff on his chest looks like it's in some kind of a pattern, though there were some extra spots that messed up that pattern this morning. In case you were wondering, petechiae are small red or purple spots on the skin caused by broken capillaries (small, surface blood vessels in your skin). He has several, but it could be much worse . . . it's still something I didn't want to just ignore. I'm sure it's nothing serious, but I would like to know why it keeps showing up. He was very brave about the whole thing, especially since he said that the nurse was going to "get him killed" because she was going to take "all my blood!" =0) He has such an imagination (I have no idea where he gets this stuff)! =0)

In addition to this, Isaiah has been moody over the past week . . . very moody. =0( Poor guy. He seems a bit better today, though. Maybe because he had a little extra Mommy-time today. =0) His mood swings have been tough to handle. I do miss those random giggles and laughs. Don't get me wrong, they're still there . . . it's just that they're not as plentiful. =0}

An exciting thing is that we have an appointment with a neurologist in St. Petersburg next month! While that may not seem like a huge deal, it's not easy getting into their clinic. Maybe we'll have some answers as to what may be causing Isaiah's speech and other developmental delays. I'll let you know how that goes. As for now, I'm still working on finding a new pediatrician and trying to get the label of Autism off his chart (yeah, his pediatrician has already labeled him without a diagnosis . . . yet another story).

On top of all of this, my dad has had a few issues recently. Last week, while we were eating dinner, my dad got this glassy-eyed look and began saying, "they're down by the berry patch, right along the side," accompanied by hand motions. My mom and I just looked at each other because it was so random - we weren't talking about a berry patch or anyone in them for that matter. At first I thought he was joking, so I laughed but I quickly realized he wasn't kidding around. My mom asked him what he was talking about and he responded with, "they're right down there at the berry patch." He, then, slowly closed his eyes and stopped talking. My mom yelled his name, and my dad looked at her like she was crazy. =0} He had no idea what he had said and denied it at first, then explained that he hadn't slept the night before and that he was tired. Later, he told my mom that he was scared - he thinks the leukemia is causing all of his symptoms (pain, etc.) and that he felt so much better when he was on the blood thinner (when he was in the hospital). I have to say, it's scary to see him go through this - especially when this isn't the only strange thing my dad has done.

Before this incident (and before he was in the hospital the last time), my dad was quiet and calm - nothing seemed to bother him, and he wasn't . . . . grumpy. =0) Seriously, nothing seemed to bother him. He wasn't cheerful, not depressed, just complacent. He didn't argue or fuss about anything. He was like that for about 2 weeks. Then came the hospital visit. Since then, he has been back to his "usual" self. =0)

I don't want to make this such a gloomy post, I just wanted to let you guys who are praying for us to know what's going on with us. =0) We have so much to be thankful for - I intended to write a post on that for Thanksgiving, but I didn't get the chance. I will write the post once I get all of my thoughts put onto cyber-paper. =0) I have some time off coming up next week, so I guess that means I'll be posting a bit more often. =0) I'm sure you're overwhelmed with joy, as your inboxes (for those of you who receive my blog by mail) will be flooded with blog posts from me! Hahahaha. ;0) Yeah, I know, I'll probably just forget again. =0)

Anyway, I do have something to post before Christmas, so you'll have at least one more post from me this month! =0) (I also have one last picture for you . . . who knew Darth Vader and Christmas would ever go together????) =0)

Dad's Home! =0)

God is good!!!! The tests came back fine - no blood clot and no heart attack. My dad was able to come home this evening and is pretty much back to himself. =0) He was even giving the nurses a fit - he wouldn't stop asking if he could come home! =0)

Thank you guys for praying for him!

Please Pray for My Dad

I have been meaning to write an update on my dad, but things here got a little crazy . . . not unusual, right? =0)

Anyway, on a serious note, my dad hasn't been feeling well for a bit, and tonight he is in the hospital. While he may not have had the same issue as he has this evening, he really hasn't been feeling well lately - he has been sleeping a lot, not so grumpy (almost indifferent - very unusual for him) =0), cold (including blue), in pain, and not sleeping well at night (naps are even interrupted by his jumping).

Tonight, my dad was admitted so that the doctor could do a few tests tomorrow to figure out everything that's going on. His blood tests seemed okay, but the doctor was concerned about his lung x-rays, and is also concerned that my dad may have a blood clot in his lung. He was given nitroglycerin and is on a blood thinner tonight; tomorrow they will do a nuclear test to see if my dad does in fact have a blood clot.

Please keep him in your prayers.

Another Appointment . . .

. . . more information. =0) Our appointment was canceled a few times (twice to be exact), but we finally got in, thanks to someone else for canceling their appointment! =0)

Over all, the appointment went well. The new doctor, Dr. S., was wonderful! Not that we have had problems with doctors at All Children's - we haven't, they have all been wonderful and supportive . . . and would even call the local hospital to lecture ER docs. =0) Nice to know someone else is out there to give those docs an earful, right? =0) Anyway, Dr. S. was very thorough and has even began more testing for diseases that might just be making things worse for Isaiah (considering the anaphylaxis episodes are becoming more frequent as are some of the symptoms like flushing and swelling . . . which I will talk more about in a little bit). One thing Isaiah will be tested for is a form of hereditary angioedema (basically random swelling that can also mimic anaphylaxis in that his airway and digestive tract can be affected). Of course, edema (or angioedema) can also be part of anaphylaxis and other allergic reactions . . . so, it's really nothing new, but it would be interesting to know about. The appointment, which was only scheduled for an hour, lasted 3 1/2 hours! Talk about thorough! =0) It was really nice to know that someone is still interested in figuring out everything that is going on with Isaiah . . . at least so much so that they aren't willing to say, "I don't know." No one was giving up on Isaiah, but they were running out of ideas . . . then came fresh meat! =0)

Yes, Isaiah still has systemic masto . . . and severe allergies . . . but they are just a little more aggressive than the two of them should really be. If you take into consideration that Isaiah's IgE counts are still not falling (they should be by now), there's just something else going on. So, what kinds of things are we seeing? Swelling of his face, lips, tongue, eyes, hands, etc (at least 4 times a week, sometimes lasting a few minutes to a day or so - it comes and goes). Isaiah also has problems with flushing (almost daily) that is generally accompanied by a rash . . . after which Isaiah usually ends up in pain from headaches and from what we think is bone pain (and abdominal cramping), but we have found that as long as we treat him with Hydroxyzine (Atarax) soon after flushing begins, Isaiah doesn't go through the rest of the process. Before we knew what to do, we would wait until the rash, which would more than likely result in the pain episodes. Now, the pain episodes come and go, but aren't necessarily associated with flushing . . . not always.

Now, all of this sounds just horrible, and it is. It's just that we deal with this so often that it's becoming "normal" . . . that's the really scary part. It shouldn't be this normal. The swelling was the one thing that the doctor just thought was a little too obnoxious to blame masto for it all. Keep in mind, masto is still there as well as the allergies . . . there's just something more.

Another good outcome is that there will be no more steroid treatments for Isaiah unless they are used to treat anaphylaxis episodes (which usually means short-term prednisone doses that are quickly tapered). YAY! =0) It was nice to see Isaiah eating well and gaining weight, but I didn't like all of the negative side effects of the steroids. Since Isaiah doesn't have asthma, the doctor wants us to try stopping the Advair!!!! YAY, another med gone! =0) It is very possible that the masto is affecting his lungs, but it might not be . . . his "asthma" attacks were likely the precursor to/part of anaphylaxis. Of course, the other meds stand as are, but I'll take the minus two! =0) Yeah, that still leaves us at a nice 13 meds a day, but that's still better than 15, right?

Another thing that was discussed was school - should Isaiah attend school even for a partial day? The doctor just about lost it when the question was raised. Her response, "absolutely not!" =0) Okay, so that takes care of the gut-twisting feeling I felt at the thought of Isaiah in a school with a lot of other little kiddos . . . with food, kiddos with pet hair on their clothing, remnants of food on their clothing . . . lots and lots of exposures to all sorts of things (chemicals, molds, etc.) that could send Isaiah to the ER, again. Then there's the issue of part-time nurses, teachers not being allowed to carry or administer student's epi pens (in our district, at least) . . . I didn't even have to say a word about my gut feeling on the subject. The look on her face at our inquiry was a look of complete horror, an almost "why in the world would you do such a thing"-type look. =0) That look said it all. Homebound it is with a few social extras on the side. =0)

Okay, let's see . . . new doctor, masto/allergy/something else combination, symptoms, meds, school . . . am I forgetting something??? Yup, Xolair. In asking about Xolair, the Dr. S. said that Isaiah's IgE is way too high for the insurance company to approve its use . . . apart from his age, his IgE count, alone, was way too high - his body wouldn't handle the shot very well. Apart from that, Isaiah is so sensitive that it might just cause a reaction (as I have mentioned before - yes, it really is a major concern), and he does not have asthma. Apparently, Xolair is only approved right now for use in patients with uncontrolled asthma issues and is not approved for prevention of anaphylaxis because it hasn't proven to be useful in preventing it . . . wow, that might have been good to know when we were considering this treatment. So, our last resort drug really isn't even a last resort any more . . . it's not an option. Good thing, but stinks to know that there isn't anything out there right now that will help us too much apart from what we're already doing.

Which brings me to the downside of the appointment: there is no cure nor preventative treatment for everything that Isaiah is currently diagnosed with (and with the possible extras being thrown into the mix). Of course, there is the common sense stuff - stay away from the known allergens and triggers. Apart from that, the histamine treatments (H1 and H2 antihistamines that Isaiah takes daily - part of the now 13 meds regimen) are our only hope for managing symptoms. Oh yeah, and we have to make sure Isaiah doesn't consume corn too often - his IgE is saying that corn may be a bad thing for him if he eats it too much . . . and his IgE to wheat and soy have actually gone up . . . as did his IgE to cat and dog . . . and mold.

There is One who can heal Isaiah completely . . . when He chooses to heal Isaiah. While I may not understand why God hasn't chosen to go ahead and heal Isaiah, I'm still at the point where I'm not sure I want to know the answer to that question. There are so many kiddos that are suffering from various illnesses, but I know God has a plan and knows the right time for their healing - in His time, not mine. His timing is perfect, so that means when He chooses to heal them, they will be. The situation, the circumstances, those surrounding them - everything will be in perfect timing, with a perfect reason. Of course, I'd still like to know when that is. ;0) However, God understands that more than I do.

Please, don't get me wrong - I don't take all of this without crying (no, I don't laugh through it all). =0) I don't always feel at peace about all of this. I just don't ask God why. I feel if He wants me to know, then He'll tell me. Until then, I'll just keep following Him - He knows where He's headed, after all. =0) My point is, though, I do cry about all of this. In fact, I spent a little time in my car (going to work) crying just thinking through everything.

There isn't a cure for masto. There isn't a cure for anaphylaxis. There's no cure for allergies, including severe allergies. There is no cure for angioedema nor the other things Dr. S. is testing for. There isn't a fail-proof medication to treat these conditions, and the majority of the medications also include side effects with long-term usage (sometimes based on the dosage Isaiah is on). The things Isaiah goes through - anaphylaxis - can be fatal if not treated . . . sometimes they're still fatal even when they are treated properly. These can be serious things if taken too lightly, yet you still have to live as normal as possible - not always an easy task when you know you have limitations . . . living with modifications. We still have to avoid the bakery section at the grocery store, picnics with bags of chips or popcorn that have a powdered substance - they usually contain powdered whey or milk. Isaiah still can't play outside when it's too hot . . . or too cold.

No school means no school parties, no school smells (I have this thing with the smell of the first and last day of school - it just smells good), no "school" experiences for a while . . . at least until things are figured out and until they calm down for Isaiah. Isaiah's school will consist of our house and computer. No school field trips, no bus rides (he really wants to ride a "yellow school bus"), no surprise art projects. It's not all that bad, though. Isaiah won't have to worry about missing school because he's not feeling well or because he didn't sleep the night before, nor will he have to worry about going to a school that's about an hour away (one school for medically fragile children was sort-of an option), no calls from frantic teachers/nurses . . . no worries about Isaiah missing out on a field trip to the zoo or a farm because he cannot tolerate being around the animals anymore. Besides, I like the idea of being able to avoid some of the things they teach our children these days so that I can teach him about what God says . . . not the US Government. I'm not opposed to public schooling, but I do have issues with the system. =0)

Like I said, it still bothers me. I'm not always feeling all that positive, though I try to be anyway. It's almost like the game Pollyanna used to play - for every bad thing, think of a good thing to make the bad seem better. I am thankful that things aren't as bad as they could be. I am thankful that I can have a more active part in my child's education, at least in the early stages. =0) I am thankful that Isaiah can still eat what we've been feeding him. I am extremely thankful that I can still see his sparkling eyes, gorgeous smile (complete with dimples), hear his contagious and melodious giggle, hear his sweet voice, get the biggest and best hugs I have ever gotten, his quirky sense of humor, his vivid and wild imagination . . . and yes, I even love those sloppy kisses and one-of-a-kind hairdos he gives me! =0) Oh, and how could I forget those facial expressions and mannerisms? =0) I'm thankful that Isaiah is my son and teacher (you learn so much from these little guys!). I could go on and on . . .

Anyway, I know this was a long post, but I just wanted to share a bit about what has been going on with him and his appointment. Did I mention we were almost hit by a police officer who pulled out in front of me??? I guess you could say he almost hit us . . . and, yes, this was on our way back from St. Pete . . . Isaiah slept through the whole experience. I slammed on my breaks so hard, that my car was knocked out of drive into neutral - good thing I was paying attention, huh? =0) I wasn't the only one, either - two other lanes of traffic almost had a run in with him . . . he went across 3 lanes of traffic! Anyway, that's a story for another day. Thank You, Jesus, for your protection! =0)

I do have more to post, but that will have to wait for a bit . . . this post was long enough! ;0) Thanks for your prayers! By the way, did you notice that the last 3 pictures were in succession - Isaiah was blowing a kiss! =0)

Waking Up from My Slumber . . . ;0)

Has it really been 3 weeks since my last post (actually, I think it's just a few days shy of being 1 whole month!)??? Sorry, it has been so long since my last post - there has been quite a bit going on here. Thankfully, nothing bad . . . just busy. =0)

Isaiah's labs (the IgE tests) have come back, but I will save the news for a while - at least until we hear more from his next appointment at All Children's. I think I have more questions than I did last year, so I want to make sure I have all the facts straight before I post anything about the labs. One of Isaiah's allergists really wants Xolair put back on the table (Xolair is the IgE-binding med that the docs at All Children's want to use as a very last resort). I'm really hesitant to say yes to this, only because I'm not so sure it would be completely safe for Isaiah - using this drug with Isaiah can raise so many concerns (anaphylaxis from the shot, the side effects, it may not even work, and it might make things worse). The only thing I will say is that the doctor said to be careful with corn. Grrrr. Like I said, I'll post more after his appointment with All Children's . . . which is in about 2 weeks. =0)

Hey, at least you'll know I'll definitely have a post around then, right? =0)

Apart from that, Isaiah is doing well . . . for the most part. =0} Isaiah has had problems with rashes and eczema (especially that obnoxious rash around his mouth). He also hasn't been eating well, though he devoured 3 baked potatoes for dinner this evening. =0) He is getting rather skinny again, which bothers me a bit - you can see his ribs again. =0( I guess that will be something we'll address at the appointment as well.

On a positive note, Isaiah is talking more and more . . . using complete sentences and saying things that are . . . well, adult-ish. =0) For example, at dinner, he said, "Mmm-mmm, this meal is just tasty!" =0) He also told me he was going to "Hamburger Helper," (no idea, it's probably something along the lines of "Scrubbing Bubbles) and that I had to stay here to take care of Nai-Nai and Ye-Ye. =0) So, being facetious, I told him that I wanted to go, too. To which he replied with the most sincere face, "Well, you have to ask." So, I did: "May I go with you, Isaiah?" Again, with the most sincere face, he replied, "You have to say please to be polite." !?! =0) Hmmm, does he sound like someone? It's nice to know that my good manners lessons aren't falling on deaf ears! =0) Hahaha

He has also become quite obsessed with Star Wars . . . yet he has never seen it. Seriously, I would never let him watch it - he's way too young. However, he somehow knows their names . . . all of them . . . and that they carry "light savers" and that there's a "death star." Sheesh! There goes my baby . . . hello, big boy. =0) Any guesses as to what he wants to be for Halloween? No, not Yoda, nor "Ooobie One Kenooobie." Nope, not even Luke Skywalker. If you were thinking Darth Vader, you've guessed correctly! Scary thought - he didn't even go for the good guys . . . though, he will try to convince you that Darth Vader is a good guy. =0) He's a little confused, but understandably so . . . he's never seen Star Wars. =0)

So, now we have Star Wars PJ's, a Star Wars t-shirt (I refuse to buy more than that), =0) and a Star Wars game . . . and a few Star Wars figurines. How did all this start???? One word, 2 syllables . . . neph-ews. =0) Yup, they started it all. =0) Oh, well. I guess it was only a matter of time, anyway, right? =0) Just in case you thought Thomas was out of the picture, guess again. Nope, he fits right in there somewhere amongst Star Wars and the Little Einsteins . . . and Ni Hao, Kai-Lan. =0)

Did I tell you about him arguing with Nick, Jr.? Apparently, Noggin was taken over by Nickelodeon and is now called Nick, Jr. Well, I can think of one unhappy little guy because of that small change - Isaiah was distraught because his Noggin was gone! =0) No worries, because all is well again - Moose A. Moose and Zee are still part of the commercials in between shows . . . but Isaiah still wants his Noggin logos. =0)

That's all for my ramblings . . . for now. =0) I will leave you with a picture of Isaiah dressed in his idea of what Darth Vader looks like . . . thankfully, he never used that potty. =0) Hopefully, I will find a little more time to post. Thanks for your continued prayers!!! For now, I'm off to play "tosies" with Isaiah. =0)

. . . and, yes, his cape is a Wiggles blanket. =0)

Happy Birthday, Dad! =0)

To a man I greatly admire

for his honesty, integrity, and wisdom.

. . . a wonderful role model

. . . an awesome Dad & Ye-Ye (Grandpa)

Happy Birthday, Dad!

Friday Fun =0)

While I thought about doing a Flashback Friday post, I thought this one would be more fun . . . because I just took these pictures and I have been itching to write a post ever since I took them. =0)

Anyway, at one point today, it was actually cool enough for Isaiah to be outside for a little while . . . as the weather usually does in Florida, it quickly warmed up and Isaiah had to come back inside to stay cool. =0) So, what did Isaiah do this morning??? He helped his Ye-Ye. =0) He loves following my dad around, helping him do whatever Ye-Ye's do. =0)

Today, Isaiah had a lesson in carpentry . . . of sorts. =0) Anyone who knows my dad knows that he loves to salvage what other people throw away - he sees a use for everything. Now, of course, he's not into garbage, garbage, but the screws, nails, wood scraps, metal scraps . . . stuff he sees that can be used again, but still the stuff most of us would overlook. Our across-the-street neighbor has been working on some kind of building in his back yard, and happened to be throwing out some lumber that just wasn't working for him. My dad, in true dad fashion, seized the opportunity to collect the unwanted scraps. The lumber was tightly stuck together with a large screw that had broken off and an insane amount of staples . . . that didn't stop my dad a bit. He quickly began working with the stuff to pull it apart and salvage as much of the supplies as possible. =0)

Well, Isaiah decided he needed to help, after all, he's a "super helper." =0) He ran outside to see what he could do, then returned to grab his "whammer-hammer" and his "rusty saw," along with a few other helpful tools (a screw driver, a pair of pliers, a wrench, and another saw). Isaiah didn't waste any time, hammering away as soon as he got back outside. It was adorable! Just watching my dad and son working together was priceless . . . of course my dad has a few bruises on his hands from Isaiah's plastic "whammer hammer" . . . and the poor "whammer hammer" is cracked beyond repair . . . but he oodles of fun! =0)

So, what was I so eager to share with you? These . . .

My Boy and his "rusty saw" =0)

"Gotta hit that staple juuuuuust right" =0) (when he's concentrating, he sticks his tongue out)

"I'll help you pull out those staples, Ye-Ye!" =0)

I can't forget these, either . . .

"Male Bonding" ;0)

Working side-by-side