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)

Funny Fridays =0)

Isaiah: "Mommy!"

Me: "Yes, Dear."

Isaiah: "Mommy!"

Me: "Yes, my Love."

Isaiah: "Mommy!"

Me: "Yes, Isaiah. What do you need?"

Isaiah: "Mommy!"

Me: "Isaiah, Mommy said, 'What?'"

Isaiah: "Mommy!"

Me: "What?!"

Isaiah: "Oh, nothing. I was just practicing."

=0)

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And a Little Update

Isaiah is doing okay since the last episode. He is still coughing and is sleeping a lot, but that's not too surprising since his lungs were involved. We have an appointment at All Children's on Monday, so if he's still having problems, I'm sure the doctor will help him out. In the mean time, Isaiah is back on Advair (an inhaled steroid) to help his lungs out a bit, even though he does not have asthma. As the local doctor says, "that's just part of the mystery of Isaiah." =0}

Oh, yeah . . . February 28th is Rare Disease Day. It's interesting that both my son and my dad have a rare disease. In light of RDD, and to help raise awareness for Mastocytosis, a MastoMom's sister is donating a portion of the sales to Masktokids.org! So, if you need to do a little shopping, take a look at www.snugglebug-boutique.com.

Well, I guess I'm done writing for now . . . Isaiah just told me, "turn off the com-poo-ter, I'm hungry!" =0) Glad he has his appetite back! =0)

Way to Go, Isaiah! =0)

I am so proud of my little man tonight. Isaiah has earned his second patch as an Awanas Cubbie!!! That means he has learned 5 Bible verses (and a motto) over the past 3 weeks! Here's the list so far . . .

I John 4.10 - "God loved us and sent His son."
Cubbies Motto - "Jesus loves me!"
Romans 3.23 - "all have sinned."
Romans 5.8 - "While we were sinners, Jesus died for us."
Genesis 1.31 - "everything God had made was very good."
John 3.33 - "God is truthful."

The best thing is that he remembers all of them - he even recited all of them for the Cubbies leader tonight! =0) Such a smart cookie . . . and what a wonderful memory! =0) I also love that he's filling his mind with good things to remember . . . not just lines from movies (the most recent is Arthur's Christmas . . . and, of course, The Wiggles). =0)

(and yes, I took my camera just so I could capture Isaiah's happy dance) =0)

Wordless Wednesday

=0)

Almost made it . . .

We almost made it through January without an episode of anaphylaxis. Almost.

Isaiah had another episode of anaphylaxis on Sunday night after a weekend (that started 3 am on Friday) of mini reactions. This time, Isaiah did not throw up - completely unusal for him. He also broke out in hives (again, not too common) along with blisters. Anyway, Isaiah began having breathing difficulties and swelling, so we called 911 and administered an Epi along with a bunch of Benadryl.

I think all the meds sort of kicked in by the time the ambulance arrived, because the once lethargic child began to talk . . . slowly, and slurred, but he was talking. =0) By the time we got to the hospital, Isaiah was bouncing off the walls! =0) Epi + a ton of antihistamines = tons of energy. =0)

So, what caused the reaction? No idea. The only thing that we (the doctors and . . . us) could figure out was that Isaiah's body decided that it waited too long for a major reaction and that he had a high fever on Friday. Considering that, this episode could have been worse than it really was.

Isaiah is doing well - he only has the dark circles and a very stuffy nose from the reaction (the docs have been considering changing his Nasonex because it hasn't been working all that well for him).

Oh, yeah - the ER physician also ordered a tryptase (a test that measures while we were there (we had a prescription for one from our doctor at All Children's), something that the hospital said they would not do . . . we'll get the results by next week. =0)

Things have been crazy here for us, but it's comforting to know that God is right there with us. When we had gotten back from the last appointment at All Children's (at the Rothman Center), this Scripture popped up on my desktop: "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance" (James 1.2-3). Gotta love the Bible Verse of the Day app. =0) Smith Wigglesworth also said that "Great faith is the product of great fights. Great testimonies are the outcome of great tests. Great triumphs can only come out of great trials."

While that doesn't seem all that comforting in the midst of turmoil, there is one thing that remains stable - God is there with you. He has never left us. Whatever trial we go through, God is there with us - walking beside us or carrying us through it. It's never pleasant to go through anything painful. However, on the other side of that pain lies joy and blessings . . . which can even be found even amidst the pain if you know where to look. Isn't God wonderful?

Anyway, those are just the ramblings of a very sleepy mommy.

Isaiah also has yet another appointment in St. Pete next week . . . this time with the allergist. Sometimes, I wonder if maybe we should just live there! ;0) Really, just kidding, but it does make you think. =0)