What have we been up to???

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Happy Easter!!! =0)

Personalize your own picture slideshow

A Little Jig for Ya (Part 2) =0)

Sorry for the missing . . . dancing e-card? =0) I have no idea what happened, but it's just not working like it's supposed to. So, I have posted it above this post so you can see it. =0)

For those of you getting this post by e-mail, visit:

http://sendables.jibjab.com/view/aATC0IBsydu6ABfI

Can you guess where we were today?

Nope, not on the moon . . .

Nope, not on Mars . . .

Nope, not fixing the International Space Station. ;0)

Okay, so the name is on the photos. =0) (In case you couldn't see it, Kennedy Space Center . . . small print)

Isaiah had so much fun! Who am I kidding, we had so much fun (Nai-Nai went, too)! =0) Isaiah even got a chance to land a lunar module and attach a capsule to the ISS (International Space Station).

Next time, we're going to take a tour out to the launch pads . . . and maybe see a space shuttle out there (there's a shuttle launch in early April, so maybe . . . ). =0)

Isaiah even met a real astronaut! Upon meeting this astronaut, Isaiah looked at him and asked, "where's my space suit?" =0) My little stinker! Do they even have space suits his size? Anyway, my little "astronaut" had a wonderful day "at work." =0)

When he got home, he took a little nap, had dinner, and decided to find his own space suit . . . and somehow turned into Obiwankintoo . . . guess he needed a better space name. =0)

Yes, Isaiah did have a few reactions while we were there, but they weren't anything that we needed to go to the ER for. He had a few contact rashes . . . it's hard to go out in public without something. A couple of doses of Benadryl took care of the rash and stopped any further reactions. God, as usual, was watching over my little future space explorer.

In other news, I had the flu last week. As a result, I had an ear infection this week, which resulted in my ear drum rupturing in 2 places. So, on Monday (the 22nd), I will find out if I need to have my ear drum repaired. Right now, there's no pain (amazing how a ruptured ear drum actually feels better than the an ear infection), but I can't hear either. Hopefully, the antibiotics and prednisone will take care of that.

Isaiah did not catch the flu that was going through our house - I ended up wearing a mask for 2 or 3 days until I was without a fever for 24 hours. I did manage, however to bring home a cold . . . which everyone else seemed to catch. =0( No worries, everyone seems to be on the mend without any ER visits . . . apart from me. =0)

Isaiah also returns to All Children's (the Rothman Center) in a few weeks (on the 23rd). Another follow-up visit and (hopefully) a discussion of the lab results that weren't in when we were there the last time. After that, Isaiah has another appointment in May with the allergy/immunology clinic.

A Little Catching Up . . . =0)

Our last appointment with the Rothman Center left more to be desired. =0) Basically, only 3 of the 9 blood tests were back - of course, the 3 that were back weren't the big tests. =0) The doctor asked a few questions, got Isaiah's height and weight, and we said goodbye until next time. So, a fifteen minute appointment after a 3-hour drive . . . yeah, not quite what we were hoping for.


I guess I expected more out of the appointment - you know, like the informational appointments we seem to have with the allergy clinic visits. It was almost as if they gave Isaiah the diagnosis of ASD and left it at that. No looking around for anything else, not trying to see if the symptoms we're seeing are masto-related, nothing. A little frustrating, but I guess we shouldn't have expected anything more - they were just doing what they normally do, there's not much else they can do.

Anyway, Isaiah started the prescribed med (rispridol) on Thursday. I can't begin to tell you how excited I am that Isaiah is FINALLY sleeping through the night!!!! =0) In over 4 years, Isaiah hasn't slept through the night (since he was about 4 months old when he began waking up every 20 minutes screaming)!!! So far, the sleep has continued. He doesn't wake up at all and he doesn't seem to twitch or cringe in his sleep! My body is still trying to adjust, as I'm sure his is too. (by the way, I took the picture on the left outside of the new portion of All Children's Hospital - they did a wonderful job decorating the place!)


Back to the appointment (I took the picture to the left outside of the new portion of All Children's Hospital) . . . since our appointment was scheduled later in the afternoon on Tuesday, we decided to take a detour to the Pier in St. Pete. It was beautiful! There was so much to take in and do. There several shops, but the best was the aquarium on the second floor! Isaiah loved it! He had so much fun bouncing around looking at all the fish. =0) Of course, it was a small aquarium, but Isaiah didn't seem to mind too much - he didn't want to leave! I think we were there for about 3 hours!!! =0)


On our way home on Wednesday, we decided to stop at Dinosaur Land . . . or World . . . whatever it was! =0) Even though it was raining, with a few bouts of lightening and rumbles of thunder, Isaiah had a blast! He loved the dinosaurs and even got a chance to dig for fossils. So, I guess our trip to St. Pete wasn't too much of a waste of time, right? =0)

On to today . . . it's Rare Disease Day! As you know, both Isaiah and my dad have rare diseases (Isaiah - anaphylaxis, mastocytosis, ASD; my dad - waldenstrom's macroglobulinemia). Well, to "celebrate" (as much as you could possibly celebrate . . . it's more of a celebration of life, really) we donned our spots for our church family to see. =0) Isaiah even helped me decorate a shirt for the occasion. =0)

God has really blessed us with life, so why not celebrate that? Seriously, there are times where Isaiah or my dad could have died, but God blessed us with more time with them. I know that Isaiah has taught me more about living than I could have imagined. Smile, even when it hurts . . . it makes you feel better. "Jesus makes everything better" and "He'll take care of it." Isaiah has even told me to "just be happy, Mommy, and then you won't be sad anymore." =0) Not only that, he has taught me to appreciate every moment, though I am still learning to seize every opportunity. The biggest lesson Isaiah has taught me is reliance on God. There have been times, on this journey with Isaiah, where I am physically and emotionally exhausted. Not that I want to give up (I am a wee bit stubborn) =0), but I just want to scream . . . and I have felt like my brain was going to snap. I have been pushed to my limits, but God has always been there to give me the extra energy, focus, and encouragement. Of course, God has also blessed us with Isaiah's quirky sense of humor. =0)

Well that's all for now. I'll keep ya posted. =0)

Rare Disease Day US 2010

Clinic Visit

Monday was our regular visit to All Children's allergy / immunology / rheumatology clinic. It went well - all the labs that we had done in November came back with good results . . . at least the third disease in the mix isn't hereditary angioedema . . . or angioedema at all. The test for streptococcus antibodies also came back negative (thank you, Jesus!) . . . that would be a very bad thing if his body developed antibodies to a bacterium naturally present in our bodies, but would explain the idiopathic anaphylaxis episodes (idiopathic = unexplained). Just a little info. on the strep antibodies . . . apparently, a high strep titer can cause a cross-reaction with brain tissue, causing abnormal behavior (including autism and, as suspected with Isaiah, anaphylaxis because the brain is sending wrong messages).

Right now, we are waiting for the next set of tests . . . the tests done by the Rothman Center. As of today, they are all back. However, we have to wait for the appointment (which they wanted to schedule for next week . . . but I scheduled for the 23rd). =0) While I want to know what's going on with Isaiah, I'm starting to feel like we live in St. Petersburg in some hotel . . . or at the hospital (since we seem to spend sooo much time there in appointments lately - the shortest appointment has been an hour and a half . . . the longest, three and a half!). No complaints, though - I know others really have the right to say they live in a hospital.

Isaiah was put back on Advair . . . not for asthma, but to just keep his lungs out of this anaphylaxis stuff (it seemed to help when he was on it, at least). No more steroids, though . . . they didn't seem to work anyway. =0) Really, that's a good thing - we don't want any more steroids! As far as any other answers as to what's going on with Isaiah, the doctor is just frustrated . . . she's not giving up, though. She wants answers, and so do I . . . as long as that doesn't mean we turn Isaiah into a pin cushion or Guinea pig.

On another note, Isaiah has grown a smidge since his last appointment . . . he's now a half an inch taller. =0) As far as his weight, he has lost 3 pounds since his last visit. He really hasn't gained anything over the past year, but at least he's still growing.

Honestly, I'm thankful Isaiah doesn't need a feeding tube . . . he never has, and I pray he never will. With all that he's been through, things could be worse . . . but God keeps things good. God has His hand on Isaiah, which is obvious. I was telling someone just the other day how Isaiah, even when he's at his sickest, seems to have a peace about him. Yeah, he cries when he's hurting, but he still has peace - God's peace. He can also keep a smile on his face when it also seems impossible to smile - God's joy. It's amazing to see the fruit of the spirit coming out in your child! =0) Isaiah's bravery and strength (again, God) amazes and inspires me.

I just love my little hero! =0)