Thursday, December 31, 2009

Happy New Year!!!

I was thinking about writing a reflection, just to talk about all the things that have happened over the past year. A lot has happened, but I think I've written enough about all those changes on here already. =0) Instead of posting about all the changes in our lives here, I figured I would just post photos. I excluded hospital photos and photos of reactions - it's a happy memory book. I only mention them here because we are so thankful that God has carried us through all of them. Without His hand in our lives, we wouldn't be where we are today.

With that said, may your new year be full of God's blessings, joy, peace, and may He bless you and your family with good health! (Oh, yeah . . . no need to turn off the music at the bottom . . . it will work with the slide show) =0)

Click to play this Smilebox scrapbook: Memories from 2009

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. . . . and check out Masto Mama's blog designs at She's having a New Year's contest and the winner will receive a free blog makeover! =0)

Monday, December 28, 2009

Merry Christmas! =0)

To watch the videos, make sure you pause the music player at the bottom of the page . . . oh, yeah, there's another video at the bottom of the page as well. =0)

I know I forgot to write an update . . . and I meant to write updates sooner . . . =0) Well, here's an update. =0)

Things have been going well - still no ER visit for either Isaiah or my dad!! I'll start with the labs that we have gotten back on Isaiah . . . so far, so good. According to the labs from St. Pete (at least the ones that we won't have to re-do), Isaiah does not have hereditary angioedema!! That's a plus, but it still doesn't explain everything . . . we do have to have 2 of the 4 labs redone because they are difficult to take. =0( Not so good news for Isaiah, who screamed, "she's gonna get me killed!" the last time we were at the lab. =0)

As far as the ones from Isaiah's pediatrician, there was no known reason for the petechiae. If it happens again, I'm supposed to take him in sooner so that we can figure out what's going on. As far as the petechiae . . . it's gone. =0) At least, mostly anyway. e has a few random dots of it here and there, but the majority of it is gone! Thank you guys for praying!!!

Now on to allergic reactions . . . yup, there was a very close call just a couple of weeks ago. We went to Maryland to see family - some of which Isaiah has never seen. To avoid a problem on the airplane or in the airport, I gave Isaiah extra meds. Well, it worked for the flight and the airport, but as soon as we left the airport, Isaiah started getting blisters on his lips, swelling in his face, and hives in his mouth and throat. Isaiah was a tad nauseous, but he didn't throw up . . . and his lungs didn't seem affected, so no Epi which means no wild trip to Baltimore-Washington Medical Center (which was near the airport). I did give Isaiah extra meds (which included 3 doses of Benadryl at one time). Apart from being extremely drowsy the rest of the evening, Isaiah seemed fine.

I would love to say the reaction ended there . . . but it didn't. Isaiah was swollen for at least a week and a half afterwards, with a stuffy nose & cough (from the nose issues), and red dots . . . oh, and then there were the red spots on his lips from the blisters. He's doing much better now apart from some babbling and other speech issues . . . and flushing and little bits of swelling. =0} I know, sounds like a lot, but I'll take this over anaphylaxis any day . . . and some of this is even a "normal" day-to-day thing for us.

My dad was supposed to go to Maryland with us, but he wasn't feeling well - not sleeping and in pain. =0( He's still not feeling the greatest, and on top of that, we have colds!

Anyway, on to Christmas . . .

A few days before Christmas, we started our regular Christmas baking . . . and Isaiah got an apron in the mail (our grocery store sent it to him) just in time! =0) He looked so cute in that apron! He had a blast, too!

We had a wonderful Christmas Eve service, where Isaiah actually stayed to participate in the candle lighting - he even sang "Silent Night"!!! The next morning was just as wonderful. Isaiah woke up and was so excited to see the gifts under the tree. =0) He was so good, though - he didn't touch any of them (except for the unwrapped Tolee doll) until we were all in the living room! Later, we decorated the cakes and put candles on one of them to sing Happy Birthday to Jesus and my mom (her birthday was on the 13th . . . HAPPY BIRTHDAY to my wonderful and awesome Mom!!!! . . . I wanted to write a post, but we were in MD and didn't have Internet access).

Instead of posting individual pictures in the post, I made a little slide show for you to enjoy . . . and I'm posting a video from Christmas day. =0)

Click to play this Smilebox slideshow: Our Chanukah & Christmas

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Isaiah was so excited to find candy that was safe for him in his stocking =0)

Thomas was on his list, again, this year - "I'm so happy!" =0)

Tuesday, December 8, 2009

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)

Monday, November 16, 2009

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!

Sunday, November 15, 2009

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.

Friday, November 6, 2009

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)

Monday, October 19, 2009

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)

Friday, September 25, 2009

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, September 18, 2009

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

Thursday, September 17, 2009

Wow, it has been a while. =0)

Sorry about that - no worries, though. =0) Things have been going well around here, I've just been busy.

So, what has been going on??? Well, a few weeks ago (yeah, I know, I should have posted sooner), I finally finished my master's degree - an M. Ed. in TESOL (Teaching English as a Second Language). I was so excited to go back to school, and I am equally as excited to be finished! ;0) If my mom has her wish, I will be a life-long student somewhere. ;0) I was also asked to be part of Kappa Delta Pi, an international honors society. God is awesome, isn't He?

Last week, we also had a few days where Isaiah could actually go out and play . . . really play. He could stay out for longer than 5 minutes and really enjoy himself. Of course, he is still recovering from the cold I passed on to him 2 weeks ago, but he still enjoyed the time outside. Poor guy - I think he was starting to get a bit of cabin fever because he also hasn't been able to go to church either (because he has been sick and because of the whole 5 months of steroids thing . . . with the flu season and swine flu issues going around, we've had to be extra careful). Hopefully, soon, Isaiah can return to church to be with his friends. I feel so bad for him, yet he really can't get sick either. It's bad enough that he caught my cold and his body is still fighting it off. Grrrrrr, steroids. =0) I think they may have even stunted his growth a little, but he has been in the 98th/99th percentile for so long, that I don't think that's too bad of a thing. =0)

Apart from that, Isaiah is doing well - no huge reactions since the last one almost 3 weeks ago (that was the 6th anaphylaxis episode this year). He has gained weight (yay!), and his appetite still seems rather ravenous - though it waned a bit because of the cold. He does have that annoying rash around his mouth (really, all over his face), again, along with eczema flair ups on his legs and arms . . . with a little bit of rash on his back. He's not sleeping well because he is itching at night, but you wouldn't be able to tell based on his energy level during the day! =0) His feet, thankfully, haven't gotten nearly as bad as they were a couple of years ago - the rough patches still remain, but he hasn't had any blisters on the bottoms of his feet. Flushing . . . well, that still comes and goes on a daily basis - I think that's just something we'll have to deal with regularly. As long as the flushing doesn't turn into swelling, rashes, and bone pain, it doesn't seem to be a horrible thing to deal with.

My dad had one appointment for his blood test results. His results weren't too bad, but the doctor still wants him to see his hematologist/oncologist - which will be in the next couple of weeks. He has been irritable, tired, and in pain . . . but he at least has been sleeping well (I haven't heard him up late at night anyway). He has also had times where he just feels awful, but that usually comes and goes. Thank you for your continued prayers for him. I know that he usually tries to hide all of this from people, and he can do a good job of that, but it's when you catch him when he's unaware that you find he really hasn't been feeling well . . . if that even makes sense. Cancer stinks!

I think I have caught you up on just about everything . . . I think. =0)

Friday, September 4, 2009

Midnight Snacks & a Prayer Request

No, this is not about me and my midnight snacks. Sheesh! ;0) I am writing this about Isaiah and his midnight snacking lately. I'm sure you're thinking, "why would Isaiah, a 4-year old, have a midnight snack?" First of all, this is my child you're talking about - he loves to snack. =0) Secondly, the steroids are now taking over. =0) A child who loves to snack has just formed a stomach with a bottomless pit.

This isn't altogether a bad thing - I mean, he wasn't eating well before his last episode. And what he's wanting for a "snack" isn't all that bad, either. It's just the time and his snack of choice that seems to be more of the issue. Take, for instance, last night. He wanted chicken. Yup, chicken. Not the frozen pieces that are easy to stick in an oven and are done in half an hour or so. Not even the Isaiah-safe chicken nuggets or special chicken hot dogs, either. Nope, he wants the real deal. The big, mouth watering, delightful-smelling, roasted chicken - two legs, two wings, the golden brown skin . . . you get the picture. =0)

Well, on to tonight. For dinner, Isaiah wanted this chicken, again. Well, since we just had chicken the previous night, we didn't have the chicken thawed for dinner tonight - I might add that we had leftovers the previous night, with the real deal cooked the night before. =0) So, I convinced him that he really wanted pasta with some extras (veggies and such). Well, he picked "noodles with da gar-wic, and da odder stuff" (rice pasta with garlic, oil, and spices). =0) So, I made his pasta . . . and he ate all of it - I had even made extra for the anticipated midnight snack, and he ate all of it. =0) Thinking he wouldn't want the noodles, again, I was hoping he would just want an apple or one of those special hot dogs.

I couldn't have been more wrong. =0)
Not only did he want the noodles, he wanted the long noodles (spaghetti noodles) tossed with the sauteed minced garlic and spices . . . at midnight. I couldn't convince him to choose a different snack, either. I offered, and gave, him chocolate ice cream (that I made from rice milk) and a fruit juice Popsicle. To top it off, he also had some cinnamon applesauce. Apparently, that just didn't do it for him. He wanted those noodles. So, at 12:30, I had to make the pasta.

And this is him enjoying the pasta . . . served with our best white grape-cherry juice, of course. =0)

And, yes, he is now resting peacefully, all snuggled up in bed while I type this. =0)


And on a sadder note, my Aunt Sis (my dad's sister) went to be with Jesus yesterday. She was a wonderful person with a huge heart - someone who would invite you into her home and cook a huge meal with whatever she had in her cabinets. She was a wonderful cook. It's hard to think that she's no longer here on earth, but now in eternity with Jesus. It almost seams surreal - we were going to visit Aunt Sis and Uncle Ivan on our last vacation that was cut short (they have never met Isaiah). I know Isaiah would have loved her, just as she would have loved to meet Isaiah in person (she spoke to him on the phone once). I know that she will be greatly missed. Please keep Uncle Ivan (her husband), her sons (Danny and Chuck), their grandchildren, and the rest of the family in your prayers.

My dad has been mostly silent since yesterday - you can tell he's really bothered by this. He's also not feeling the greatest either and has an appointment as soon as he gets back with his oncologist - some tests came back with some not so great results. I will keep you posted on the labs and the appointments. I know you guys will pray for him as well (as you already have been).

Sunday, August 30, 2009

Update from Our Latest ER Visit

Just to let you know how Isaiah is doing today, he is feeling much better - he even ate!

Yesterday, Isaiah spent the majority of the day resting - he wasn't really into playing very much. Every once in a while he would let his personality shine through, but he would tire easily. He ended up falling asleep around 9, only to wake up again at 10 . . . not wanting to go back to bed until 3.

As far as eating, he was still throwing up a bit (reactions can take a bit to calm down, and he hadn't eaten since Friday night around 7 or so). His tummy just wasn't settled, even with all the extra meds.

Today, however, he hasn't thrown up at all and decided that he wanted chicken and "trench tries". =0) While he still didn't eat a ton (as I would have thought given the dose of steroid he is on right now), he did eat. And he has been munching ever since. =0) I imagine that by tomorrow, he'll have the refrigerator and the cabinets cleaned out. ;0)

He has also been drinking a bit more (another thing he wasn't doing much of). He drank a little before going to bed (by a little, I mean 2 cups of Sprite and 1 cup of Coke . . . he did ask for them, after all). =0) Today, he still won't touch juice, but he has finished the bottle of Coke and is almost there with the Sprite (I know, but he really doesn't get this stuff all that often). I also offered his "chocolate milk" (chocolate rice milk), but he really wasn't interested in that either . . . and, yes, the stuff actually does taste good. =0)

Tonight, he's almost back to his normal self - even taking time to play loudly and dance a bit. =0) Today, he plays for a bit, then rests - not 100% normal, but getting there. Recovering from anaphylaxis can be tiring, so I'm not too worried. Right now, he's reenacting the launch from Friday evening with his little space shuttle. =0) Maybe it's just loud because I have a cold and my ears are overly sensitive, but he is unusually loud tonight! ;0) It's good to see he's feeling better. (hahahahaha - he just yelled out, "Mommy! I'm going to space exploring!" =0) Goober.)

Well, I have to give the last meds of the day and get my little "super driver, space explorer" to bed. =0) (hahahaha, no he says he needs "Mommy's" help, who just so happens to have a red, painted-on goatee, because there is a "meee-ter shower!" Sounds urgent . . . by the way, I don't have a red painted-on goatee, just the little figurine that he's pretending is "Mommy" - I love his imagination! ) =0)

Before I go, though, we have been keeping Isaiah in because of the flu - he has been on prednisone (a steroid) for about 4 months now, and is now on a higher dosage of it for the next 8 days. Since taking steroids lowers your body's ability to fight off infections, Isaiah isn't really allowed to be out and about - there are cases of the swine flu around here, too. He isn't able to get the flu shots because he is allergic to eggs. We, however, can get the flu shot and will as soon as it comes out. I do work with kids, so I am exposed to germs. Please pray Isaiah won't catch any of these germs - we really don't need that. =0) Thankfully, there have only been a few times where Isaiah has had a reaction because of an illness (fevers can irritate those overactive mast cells).

Okay, so, yeah . . . it's time to get this little guy in bed . . . he's collecting ants and giving them to us (okay, so there were only 2) . . . the big ants that somehow have sneaked in under the front door . . . silly ants. =0) And now he tells me he needs a red super hero cape with a space shuttle on it because he's a super helper, too. =0) I just love the way he thinks . . . and how he's ever so specific about his requests. =0) Any ideas on how to get a child on steroids to go to sleep??? ;0)

Saturday, August 29, 2009

Midnight Launches & 3 am ER Trips

Well, Discovery finally launched last night at 11:59 pm - might as well say midnight, right? It was a perfect view, too. The launch pad was visible, and the launch went smoothly - with lightning more than 30 nautical miles away. It was beautiful, and Isaiah ecstatic, saying that he could drive the space shuttle because he's a "super driver." =0)

After the launch, we came home and went straight to bed - after all, it was after midnight. I would like to say that was the end of the evening . . . but Isaiah's body had other plans.

At 3 am, Isaiah started squirming around. When I touched him, he was cold - very cold. I checked the blankets to make sure he hadn't kicked them off, but they were right where they were supposed to be. So, I turned on the light, and took one look at Isaiah and knew what was happening. Isaiah is having another episode of anaphylaxis. He made it 7 weeks without an episode; he is still on steroids. This shouldn't be happening, but here we are, again. His lips were blue and swollen, along with his hands and feet, and he was beyond pale - even his eyes were dark and puffy. He wouldn't answer me, but stood up in the middle of the bed and said "doctor" and "shot." Thankfully, I had a green tub from the previous hospital trip under the bed, which I grabbed and held it under Isaiah's head. He vomited and I grabbed the Epi and gave it, called 911 and waited for the ambulance to show up. On the way to the hospital, Isaiah was given a nebulizer treatment because he still wasn't acting quite right. (he was itching in the pic) =0}

At the hospital, they gave him Zofran to calm the nausea and vomiting all the while watching his heart rate bounce around - from 145 to 60 . . . the Epi was working to keep his heart rate up, but his body wanted it to slow down. Isaiah was lethargic, understandably. So, the doctor decided to give him a shot of Benadryl and Decadron (a strong steroid). The combination worked, and 6 hours later, he was allowed to come back home.

I would like to say that he is completely back to himself, but he isn't. He is much better, and has even had a few chattery, bubbly moments today . . . especially concerning Star Wars (the child has never seen Star Wars, yet knows the names of the characters . . .go figure!). He has thrown up one more time this afternoon, and has yet to eat anything - his only request was a bottle of "prite an coke," which of course I obliged. =0)

Isaiah will be on a stronger dose of prednisone for 4 days, which will be decreased to a strong dose for another 4 days, to a mildly strong dose to be taken until we go back to St. Pete for his next appointment. While prednisone and steroids help his body to resist anaphylaxis, if his body wants to anaphylax, it will - regardless of what we pour into it. It's frustrating that he's on so many meds, and yet the anaphylaxis just doesn't stop. It's equally as frustrating to know that without those meds, the anaphylaxis is much worse and would happen more frequently, of course, without God's intervention.

In the midst of all of this, I know that we serve and know a God who can and will heal Isaiah . . . I don't know when, but I know He will. I know God has a purpose for Isaiah - He says so in Jeremiah 29.11. I know that God isn't allowing Isaiah to go through all of this for nothing - his suffering isn't in vain . . . none of our suffering, regardless of what it is, is in vain. God knows why Isaiah is going through this . . . as much as I want to fix it all for Isaiah - I know that, in my human strength and limited knowledge/wisdom, I can't. It's not up to me. I hate that Isaiah is going through this - I hate seeing him turn blue, vomit, have problems breathing, seeing his beautiful face swell, knowing he's in pain. Yet, at the same time, I know God has it all under control - He doesn't like to see Isaiah go through this either! He doesn't take joy in seeing us suffer - it hurts Him when we suffer. There is at least consolation in knowing that.

"Plans to prosper you, not to harm you. Plans to give you a hope and a future." While I may not know the plans for my son, I know God's plans are perfect - and I trust Him for that. There is more comfort in that. It's so easy to look at the negatives in the situation, to remember all the meetings with the doctors and every hospital visit, every time Isaiah has ever had any type of allergic/masto reaction . . . without God, I don't know how anybody could handle it. Without God, there just isn't any hope.

So far, our next appointment with All Children's is in November - our Dr. T has decided to go into immunology full-time (hope we didn't scare him off!), ;0) so we have a new doctor along with the fellow we have had (who thinks Isaiah is just the cutest thing he's ever seen . . . apart from his own daughter, of course). =0)

Monday, August 24, 2009

"Not My Child!" Monday

Welcome to Not My Child! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what her children (and everyone else's children) have not been doing this week. =0)

And for those of you who don't really know much about this blog carnival, the "not my child" portions are sarcastic, so the "did not's" are actually the "did's". =0)

My child did not sit and ignore an entire conversation where someone was being teased about wrecking his car. That person's mother did not ask, "What were you doing?" Of course, his response wasn't, "I was hitting the breaks." That person's father did not ask, "With what???" **Here's the part where Isaiah does not come in** To which Isaiah did not say, "seahorses!" Nope, not my child! (His response was so perfect!) =0) (Told ya, B - that was so blog-worthy . . . and of course, I had to make a picture for ya!) =0)

While we were with our friends, Isaiah did not tell everyone at the table that his poo-poo was brown. Why would my well-behaved child say anything about his bodily excrement to anyone? I mean, it wouldn't matter that C was not talking about a Leap Frog book (the older one) where you could make up inappropriate sentences like, "the Pooh-Pooh was in the pot" (using the Winnie the Pooh book, of course). Why would my son interject with, "my poo-poo is brown!" . . . . . . =0) Nah, not my little man. =0)

Isaiah would never tell me that he has to go with the astronauts to the moon so that he could "save da a-wee-ens!" (aliens). Nope, he wouldn't even insist that there are 4 of those aliens on the moon, either. =0) As far as staying up to see this night launch, which occurs around 1:30 a.m. tonight . . . not my child! ;0)

. . . and this same child would not go into the bathroom and steal the Clorox toilet bowl wand to use as a sword, either . . . =0) Can we say, disinfectant??? =0)

My adorable son also does not like homework so much that he asks to do homework . . . nor does he carry around his lunchbox and backpack so that he can "do" his homework. Oh, yeah, we also did not go back-to-school shopping to buy a big boy back pack (that actually holds his workbooks), notebook, folders, pencil holder, pencils, markers, crayons, paper, and lunch box to match the back pack. Nope. And he was not at all unimpressed (while I was not ecstatic) about the whole trip. Not my child. =0) (Yes, I know that pre-kindergartners do not have notebooks, but he did want one and it was too cute to pass up - it has robots and animals on it) =0)

Friday, August 14, 2009

Back to School, Day 2 =0)

Again, Isaiah was more than excited to be "back in school." =0) When he woke up this morning, I told him Ms. F was going to be here, and his response was, "Oh, Ms. F? Yippee!!!" =0) He did so well today - he even sat the whole time with his speech therapist! Trust me, that's a huge thing for him. =0) It's amazing to see Isaiah's progress - less than one year of therapy, and there is a huge difference in him.

Of course, I couldn't let Isaiah's second day of "school" go by without taking any pictures. =0) So here they are, more pictures of my baby boy, who seems to be growing up way too fast . . .

I just love his smile and sparkling eyes! =0)

Mr. Bashful

He looks so grown up!

Sitting down on the job ;0)

I just love the look on his face in this one - he's contemplating his next ornery plan =0)

And just in case you missed the lunchbox . . . ;0)

Wednesday, August 12, 2009

First Day of "School"

Yes, my little Isaiah had his first day of "school" today. Since Isaiah is home bound as far as school/preschool goes, I thought I would try and make this first day of "school" more eventful - you know, not just his therapist showing up for OT. So, I had him decked out in a nice set of clothes fit for school, back pack filled with "homework" (a workbook and a coloring book), and his crayons . . . oh, yeah, and one of his favorite books, Dr. Seuss' ABC's. =0) And just for kicks, his bigger crayon box that looks sort-of like a lunch box. =0) He looked adorable! Of course, I'm biased . . . =0)

Anyway, I figured we needed to start our own back to school traditional photo. I was trying to think of the best place, someplace that works for us. We have trees, but nothing all that gorgeous - a lemon tree, a grapefruit tree, a very little banana tree (that has never actually grown any bananas), an orange tree, and some kind of a weird decorative tree that resembles a prehistoric tree . . . you know, one that you would expect to see at the Museum of Natural History . . . in the dinosaur section. =0) Well, since the trees weren't going to work out so well (especially since it was roasting outside), I had to think of another place.

I happen to really like our front door. It's nothing all that special, except it is solid wood. No windows, nothing overly fancy with stained or frosted glass, just wood. So simple, it's pretty. Nice color in the right lighting, too. =0) So, I figured that it would be the best place to take a back to school picture - after all, he's going back to school. =0)

All that said to show you these:

Doesn't he look so happy? He was ecstatic that Ms. K was coming and is looking forward to Thursday when Ms. F is coming. He had so much fun today - reading books, working on tangram pictures, showing off his new spelling skills (and writing skills - yup, he can write the word "toy" as well . . . go figure)! =0)