Wordless Wednesday

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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)

My Dad and Zambia

My dad is home from Zambia! He actually returned last weekend, but I figured I needed to have a chance to go through his photos before I posted. =0)

Yes, my dad went to Zambia even though his doctors advised against it. =0) That's my dad! =0) Besides, it's difficult to go to Zambia without having a life-changing experience. It leaves such an impression on your heart, that you can't help but want to return. I still remember the beautiful sound of Zambians (adults and children alike) singing praises to our God, I remember the smells, and the scenes . . . the nighttime services, being in the middle of nowhere (yet somewhere special just the same), walking/driving through the villages. I miss it just as much as my dad . . . who can't seem to get enough of it either. =0)

This trip, Sons of Thunder was dedicating a church that my dad (and others) helped build. I know this was just another life-changing experience for my dad. As I said, it's impossible to go to Zambia and not be changed.

Of course, my dad has tons of stories to share . . . but has been so quiet since he came home. Unusual for him, since he usually talks your ears off for hours. ;0) I could tell you of my experience in Zambia, but I think my dad's most recent experience will be more fitting. As he decides to share, I will post. Until then, I have posted a couple of videos for you to watch . . . I miss those sounds so much! To see more videos from Sons of Thunder, you can visit YouTube and search for SonsOfThunderFarm (or just click on SonsOfThunderFarm). =0)

(You'll have to mute the music player at the bottom of the screen to hear the movies)

Church Dedication, Part I

Church Dedication, Part II

Village Service

All Children's - Rothman Center

Isaiah had his appointment with the neuropsychiatrist on Wednesday. I will start out saying that it was a looooooong day. Not only was the appointment at 9 am, the appointment lasted 3 hours! The long day also included lab work and a 3-hour drive home . . . I think we finally made it home by 10 pm.

The appointment went well, for the most part. Nothing was said that we hadn't already been told (rather, suggested) before. After playing with 2 therapists (a speech therapist and an occupational/physical therapist) for about 30 minutes or so, it was decided that Isaiah needs ST and OT at least 4 days a week . . . and PT to strengthen core muscles. They also said that he would benefit from a therapist-controlled social play group . . . no food involved, and only an hour at a time.

After meeting with the therapists, Isaiah was introduced to the physician (a neurologist-psychiatrist). She played and observed Isaiah for the rest of our stay (about 2 1/2 hours). She asked lots of questions (of us and Isaiah), but mostly observed. At the end of the appointment (and after consulting the therapists), it was concluded that Isaiah has very high functioning Autism (an Autism Spectrum Disorder). The doctor said that Asperger's Syndrome would have been considered, except Isaiah has a speech delay (which is not part of Asperger's Syndrome). Along with that, Isaiah was diagnosed with ADHD (combined type) and Sensory Integration Disorder, both of which go along with Autism Spectrum Disorder.

We were given more informational papers, a recommendation to CARD (Center for Autism and Related Disorders), and the doctor's orders (including lab work and a list of recommendations for therapy). It's the lab work that made our day that much longer . . . I'll explain more in a minute. =0)

Since it was a beautiful day outside, we were in beautiful St. Pete, and we were just given an overload of information, we decided to go play at a park at one of the ports in St. Pete. It was a beautiful park, and such a wonderful addition to our day. Isaiah really needed the time to unwind, especially after the long car ride to St. Pete and the long day we already had. He had so much fun, and it was cool enough outside that he didn't even flush! =0) That's a huge thing for Isaiah - that has been a daily part of our lives recently and something that happens when he plays outside. It was so cool outside that he didn't even need the cooling vest! =0)

After playing for a while, we decided to go find a place to have lunch . . . and to start our 3-hour trip home. Or so we thought. No, no ER trip. You see, we stopped for lunch and began reviewing the paperwork from the appointment. After looking through all the checked boxes for labs, we noticed that the doctor had forgotten to inform us that the labs needed to be completed at All Children's . . . which was now 45 minutes away from where we were . . . and it was already 2:30. So, back to St. Pete. =0)

We got back to the hospital, found the re-located lab (the hospital is under construction and all the outpatient facilities . . . except for the Rothman Center . . . had relocated to the new building), and registered for the lab work. By that time, it was around 4:30. Then, we waited. And waited. Yup, and waited some more. =0) At 5:00 or so, they took Isaiah back for the blood donation . . . they took 9 vials! Full vials, that is. Poor guy!!! During the whole process, the nurse missed his vein and decided to dig around a bit. Isaiah was already freaked out enough that he was going to get a "shot" (he sooooo recognized the lab decor), and began yelling "She's going to get me killed! It's not my turn, it's Bafanjoo's (my nephew) turn! Bafanjoo wants a shot!" Nine vials later, labs were completed and we returned to the car to begin our long trip home, rush-hour traffic included. =0)

Honestly, I'm not shaken by the diagnosis. There is still a large portion of Isaiah's actions that aren't covered by the diagnosis, so some things are more than likely the masto. Yes, the doctor did mention medication, but only one . . . and it will help with sleep . . . if we decide to add it (we still have to talk to the allergists). And why be shaken when Isaiah was Isaiah before the appointment? Isaiah hasn't changed at all - just how we help him understand the world around him. As Isaiah calls me his "Special Mommy," Isaiah is still my "Special Baby Boy" . . . and he always will be. He's the fulfillment of God's promise to me, and what a wonderful promise & blessing he is! I'm proud of him and I'm honored to know him - to be his "Special Mommy."

I love you, my Special Baby Boy!!!

Ice in Florida?

Yup, ice . . . in Florida. =0) We had a bit of a cold spell here. It's about time, I say - it's strange to live in a place that only really has 2 seasons . . . a very long Summer and some kind of a Spring. No fall, no real winter . . . except for this year. We actually had a winter! =0)

This past weekend we had "snow". Okay, so more like rain mixed with sleet . . . with a few flurries. =0) Not the winters we were used to in Maryland, but hey, it works. =0)

Isaiah was in heaven! He heard the word snow on the weather channel and went nuts! "SNOW! I build a snowman an frow snowballs!" So, just to let you know what we got to do this past weekend . . .

Poor icy tree . . . odd how it turned white . . . the others seemed fine

Icy lawns . . . don't let my dad know you saw his patchy-brown lawn . . . he takes pride in his usually green lawn. =0)

See the sleet bouncing off my dad's truck?

Okay, now on with the cute pics. =0)

Just look at that face . . . not sure of what to think of the invisible snow =0)

Pleased that the sky was making the "snow" (it was sleet with a tad bit of rain)



He caught some on his glove - "Wook, Mommy, a snowfwake!" =0)

"Awesome!" =0)

So happy =0)

Snow dance, anyone?

Still dancin'

Catching the ever illusive snowflakes =0)

My little "snow angel" =0)

Fascinated by the sleet tapping the umbrella

"I'm singin' in the . . . uh, sleet!" =0)

Of course he had to use his umbrella . . . "ev-wee day is an umb-weh-wah day!" =0)

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)

Make a Smilebox scrapbook

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

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)

Make a Smilebox slideshow

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)