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)


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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)