Thursday, July 30, 2009

Wordless Wednesday

I just love my cute little Scrunch! =0)

Monday, July 27, 2009

Home again, home again . . .

Our nearly 10-day vacation was cut short. =0( Sadly, Isaiah couldn't handle it . . . more precisely, his body couldn't handle it. We left Tuesday evening after I had gotten off of work, and made it to Tennessee by Wednesday evening . . . where we got, um, stuck. Seriously, Isaiah's body just wasn't tolerating the trip. Wednesday, Isaiah started flushing. It wasn't too bad, but he was showing other signs of stress - he was shaking his hands a lot and jumping quite a bit.

Thursday, we decided to stay an extra night in Cleveland, TN then try to leave for WV on Friday. Thursday, Isaiah started flushing even more - and the weather was in the mid 70's to low 80's during the day! Of course, Isaiah's perfect temp is somewhere in the 60's and low 70's . . . but, it was still cooler than FL. Anyway, we walked around on Lee University's campus for a bit, visiting a few of my professors and buildings that I had classes in. It was so nice to be back on Lee's campus - I can hardly believe I graduated 6 years ago . . . and in 6 years, the campus has changed so much!

New School of Ministry building at Lee

Thursday evening went rather well, so we thought that maybe Isaiah's bit of flushing was just one of those things we expect on a pretty much daily basis. Really, it was a red face, but nothing too bad. So, Friday morning we decided to travel north into WV. About an hour into the trip, Isaiah was red . . . really red . . . and we were in the air conditioned car. I think we made it to Knoxville, not so far from Cleveland. We stopped to eat, and decided to turn around and go to Chattanooga (the hotels where Isaiah could stay were pretty much full). By the time we were in Chattanooga, Isaiah was okay, but still a tad pink. Since he's not the one to stay in a little room for very long, we decided an activity at the train museum would be something fun to do . . . it was, and Isaiah did get to ride a train for the very first time . . . okay, so a full-sized train for the very first time. =0) No worries, the car (which Isaiah called Annie) was an air conditioned car and protected from the coal from the locomotive. =0) He loved it . . . especially since a man who looked like Santa Claus was our conductor. =0)

Surprise, Santa! =0)

By the end of the train ride (and by the time we got back to the hotel) Isaiah was bright red - bright, yet deeply red. He was also in a lot of pain - his arms, legs, and head were hurting. He wasn't dehydrated nor had he over-exerted himself by jumping or running too much - we were riding a train. In fact, I carried him through the museum and he sat the whole time on the train ride. The cooling vest, which I thought would be helpful in this type of a situation, didn't help much at all . . . but it wasn't (just) the heat that was causing the problem. Anyway, I had already given him 2 doses of Benadryl (once when we stopped for lunch and once before the train ride), but I gave him a third to try and stop a larger reaction. He was soooo grumpy (probably from the Benadryl and reaction - hard to really say which one caused what).

Polar Express, anyone?

Saturday, we slept in and then decided to try to salvage the vacation a little. So we went to another museum where we thought we could have a little fun, but still keep Isaiah calm. It didn't work. In fact, Isaiah just about collapsed. Just going from the car to the entrance of the museum, Isaiah fell to the ground and began saying, "It's too hot! I hurt!" Talk about scary. He went from a pale color (not all that unusual for him) to a bright and deep red little boy that resembled a lobster . . . again. So, more Benadryl, which seemed to help the pain more than the redness, and a car trip back to the hotel . . . and a nap. Boy, was it nice to have that nap. =0)

By this point, we knew we needed to go back home. Staying out any longer would not be a good idea, and the longer we stayed, the more likely a bigger reaction would occur. So, we decided to leave Sunday morning. Sounds easy, right? Well, it would have been, except we slept in, then had to stop for potty breaks. I think we finally made it back to FL by 12:30 AM or so. At least we were home . . . and Isaiah had slept for a good portion of the trip, but was ready to straight to bed as soon as we got home. =0)

Which now brings me to Monday. Since Isaiah had so many issues during the trip, I thought it might be a good thing to call his local allergist (no need to add a 3 hour trip to St. Pete). =0) It was a good thing, too - Isaiah was flushed when he woke up . . . and he had a slight fever (not unusual with a reaction). So, off to the doctor to find out why this was happening. Or, at least I thought we would have a vague understanding of what was going on.

The doctor was glad we came back, because Isaiah's mast cells were certainly reacting. Still no idea why, though . . . the doctor said it could have been several things: the change in environments, the weather changes/changes in temperature (going from an air conditioned car to the warm/hot air outside), with Isaiah, it's hard to say . . . she used the very familiar statement that, "Isaiah is just another one of those medical mysteries." Anyway, Isaiah's lips were slightly swollen, his heart rate was a bit too fast, and he was rashy. Thankfully, his lungs were clear and his nose looked good. =0) She said that had Isaiah been in the hospital, she would recommend an IV to try and dilute the chemicals in his blood (released by those wayward mast cells), but since he wasn't, force fluids and rest, rest, rest . . . and no outside time until his body calms down. =0( I was concerned that I didn't use the Epi, but she assured me that it was okay since he wasn't anaphylaxing, but having a reaction of some kind. Yet another dose of Benadryl, a dose of Gastrocrom, and Tylenol later, and Isaiah's flushing and pain subsided.

He's doing so well today that he has only had those red dots (oh yeah, I forgot to mention those . . . they were present during all of this, too) and slight flushing on his cheeks. =0) He is starting to eat again, and is actually playing today. Yay! Other than that, he is pale and has those dark circles that tell us he has had some kind of allergic reaction. Even though he was excited to go on the trip, he's extremely happy to be home. =0)

Well, that's all that's happening here. =0) I'll keep you posted. =0)

Thursday, July 16, 2009

4 Weeks!!!!!!!!

We have officially made it 4 weeks without a hospital visit!!! YAY!!!! I am sooo excited about this because it was beginning to look like we were going to be visiting the ER way too often. Hopefully we can go much, much longer than this without an anaphylaxis episode.

That said, Isaiah is doing good. He has spots on his face and on his arms (little tiny red spots), but he looks pretty good overall. His speech is slowly recovering from the last episode and I think things are getting back to "normal." Another neat thing is we finally got to go on vacation. So far so good, but it looks like we may have to take a break for a day - he's getting really stressed . . . or overstimulated. Either way, he needs a day to catch up. =0) The trip is going well so far, very few reactions (reactions meaning rashes, sniffles, flushing . . . well, we have new rashes and he's flushing, but all is still well).

Speaking of "normal," =0) we had a very normal event happen this last week. Endeavour finally launched on its 6th attempt! =0) Yes, Florida weather this time of year can be a pain in the tush . . . it usually rains at some point every day this time of year. So, back to Endeavour, it finally launched even though the sky was a tad overcast. It was still incredible to see and I will post it for you guys to see - it was soooo loud. The clouds helped the sound last for quite a bit longer than it usually does and even helped to amplify it a bit - it was loud. =0) It's funny to hear people's car alarms going off for a launch (that's usually the thing you'd expect to happen when the shuttle comes back, you know, the whole sonic boom thing). It's so weird to be in the house when a shuttle comes back . . . it sounds like something has fallen on the roof of the house! It rattles windows, you can feel the vibration in a concrete floor . . . you get the picture - it's loud! =0) I'll post the video a tad later. =0)

"Da pace shu-tul went wayyyy up dere!" (The space shuttle went way up there . . . just in case you didn't catch that) =0)

Anyway, Isaiah was really excited to see the space shuttle go up, but disappointed that the astronauts didn't take him with them. Poor guy . . . maybe someday he'll get to see Jupiter or Mars. =0) With each failed attempt at launching, Isaiah was getting angry and discouraged. The last two times, Isaiah said that he was a superhero and would "break the storm" and help the astronauts get into "outer pace". I was so hoping that the shuttle would go up last week - it was difficult to explain to him that the shuttle had to be turned off because of a storm. =0) The look on his face was so sad. I wish we could get him over to the cape to see the shuttle - at least to one of the VIP spots. He is such a huge fan of the space shuttle . . . =0) He has been talking about going into space and seeing all the planets and stars . . . who knows, maybe we have an astronaut on our hands? =0) Maybe if we don't get our vacation, we can go to Kennedy Space Center once it cools down here . . . hopefully sometime soon . . . yeah, I know, wishful thinking, Florida isn't exactly known for it's cool weather. =0)

Sorry I haven't posted in a while - things have been so hectic, and Isaiah hates it when I am on the phone or the computer - he hates it. =0) I think he even knows when I am on it when he's sleeping . . . he always seems to wake up at some point. He's always been that way. =0) I have also been preparing for our trip - something I was still hesitant to say that we were actually going on this trip. I really didn't want to get my hopes up, nor Isaiah's - especially since we had to cancel it last time. I am hopeful and expectant that this trip will be negative-event free. =0) Planning around anaphylaxis that can happen for no apparent reason can be so stinkin' tricky . . . speaking of stinkin', did you know that there was a Flippen, Georgia? I laughed so hard I nearly had to pull over! =0) Anyway, trying to plan a vacation close to hospitals is so difficult! So is trying to find hotels that do not allow pets - something I had never thought about until I had a child with severe life-threatening allergies . . . I also never knew someone could anaphylax from being around or near a cat or dog.

Apart from all of the excitement from this past week, there's not much else to post . . . things are "quiet" for the most part - I am soooo thankful for that. I'll try to post pics every once in a while of our trip. I know that I have been horrible at posting, I have just been enjoying time with Isaiah . . . and going to bed at a reasonable time. =0)

Tuesday, July 7, 2009

Out of the Mouth of Babes

"A cow makes a cheese and a cow make me sick!"

Yes, something like that, my dear. =0)

Wednesday, July 1, 2009

No News is Good News =0)

We finally received Isaiah's platelet count results - everything is fine. His platelets were a tad on the low side of normal, but still normal. YAY!! Actually, I have heard that it's not unusual for platelet counts to reflect anaphylaxis - I don't know the entire explanation, but that's at least what I understood from the medical jargon. =0)

The weird thing is that Isaiah's red dots and flushing have become so "normal" that I haven't posted much about them lately. We see them almost daily. Strange to think that there are things that we may face that will become "normal" - something that you almost expect to show up at some point every day (though you hope they won't). He has even been waking up flushed, rashed, and red-spotted. It's not the soap, it's not something he's wearing . . . it's not something I'm wearing that I know of. I check every product I wear to make sure it's "Isaiah-friendly." Shampoos, conditioners, soaps, every bit of makeup, hairspray, hair gel/mousse . . . all of it has to be Isaiah-friendly, and so far it has been. I wish I knew how to stop the reactions (especially the anaphylaxis) from happening. Yet, I also know that it may not be anything I'm doing (or anybody else for that matter) . . . it's just Isaiah's body. That part stinks!

Oh, yeah . . . Isaiah's speech is still being affected by the past two anaphylaxis episodes. Yes, a complaint has been filed with the hospital against the ER doctor (not the nurses), and yes, we are switching pediatricians. =0) I can't tell you how much I dislike switching doctors, but I think this is one time that warrants change. I think that IV fluids would have helped so much, had Isaiah actually gotten them. Isaiah's speech had improved so much to be set back this far. It's not a hideous change, but it is difficult to understand him - even for those of us who have been around him the most. It's not slurred speech, so much as it's babbling . . . again. =0( Vivian, you've got lots of work ahead of you (I'm sure you're glad to hear that, huh?) ;0)

We are working with Isaiah on his speech, but it just seems so frustrating to him as well as to us - he had made so much progress. I feel so bad for him . . . I wish I could just make it all go away for him.

In other news, Isaiah has been doing so good. He really enjoyed his birthday, but hasn't mentioned another birthday cake (he was mentioning "birthday cake" on a daily basis for over a month) . . . maybe we can finally take down the Thomas birthday banner that has been hanging up since last year . . . =0) Sadly, yes, that birthday banner has hung in the same spot for an entire year! Isaiah would not let anyone take it down. We even tried taking it down at night, but he would notice . . . and incessantly ask for it. Sometimes, you just gotta know when to pick your battles. That wasn't one of them! =0) I think I'll take it down tonight just to see if he notices when he wakes up tomorrow. . . I think. =0)

Since it has been so hot here, we've been stuck in the house. However, Isaiah did get to go out for a few minutes, with the cooling vest, of course. It was about 15 minutes, but to Isaiah, it was pure heaven! =0) He had so much fun in his little bit of time outside of the house. Then, the itchies came along with flushing and made him angry . . . he's still so cute when he's angry! =0) A bath and a couple of doses of Benadryl later, and all was right with the world again. =0)

As far as the 4th, we had a relaxing day. It was great! We had our own little indoor picnic, complete with watermelon. We watched movies, played together, and just had a wonderful time. Of course the evening wouldn't have been complete without fireworks - which were viewed from inside the house . . . then the car. Let me explain that one . . . as long as the fireworks were far away, Isaiah was fine. It was when the neighbors started lighting them, that Isaiah was scared. Only then was a "ride in da jungle" in "mommy's car" in order. =0) Yup, we went for a car ride to watch fireworks, though I don't think Isaiah really wanted to see the fireworks. In fact, I had to peel him out of the car when we got home - he thought the fireworks were going to come in the house and set the house on fire. =0( Poor guy had nightmares all night because of those "pireworks." He talked a lot about them today, though - you would never have thought he was even scared of them . . . except for the comments of "da pireworks stay out dair." =0)