Wednesday, June 10, 2009

Some things I Promised =0)

Well, there are a few things I promised to post, so I think now is the best time to post them . . . you know, before all the stuff becomes 1, 2, 3 weeks overdue. ;0) Just so you know, this is one of those long posts. =0)


Isaiah had a blast! It was such a wonderful experience for him. So much so that he still hasn't stopped talking about it! =0) He is still singing the songs, talking about the activities (the binoculars and safari are still very high on the list), and he still wants to use the red finger paint. =0) He has even recited some of the Scripture memory verses, though he has the references all wrong and the majority of the verse is babble . . . cut the kid some slack, he's only 3 1/2. =0) Just kidding . . . he is 3 1/2, but unless you help him slowly memorize something, he will repeat it just the way he hears it only quicker. =0) (and the 3 1/2 thing . . . someone has a birthday very soon . . . my baby will be 4!!!!!!)

Really, he had an awesome time. It was amazing how much he talked about, whether you could understand all of what he was saying or not. =0) He even learned a new song - the Hokey Poky!!! He is sooo cute doing the little dance!!! =0) I'll have to get a video of it to show you guys.

The Cooling Vest

No, I did not get it finished before VBS. Yes, I did finish it. Yes, it does work (at least temporarily and in less extreme situations . . . for at least mild flushing and heat issues) . . . and yes, Isaiah loves it! =0) In fact, we have had problems getting him to take it off. The best part is that it doubles as a weighted vest (these are sometimes used with kiddos with Autism and ADHD, along with others who have sensory disorders). I haven't exactly used it as a weighted vest, yet, but who knows??? I might have to try that . . . =0) In hind-sight, it might have been easier to surf the web looking for a child's fishing vest and add a few pockets here and there. On the other hand, I'm glad I chose to make the vest - it is Isaiah-approved (he loves trains)! =0)

Anyway, after much poking and extremely sore fingers (and boy, hope there are no stains on the thing), here is the finished product (please remember, I am not Martha Stewart or anybody else who is really good with sewing, so please ignore the seems . . . and pockets): =0)

The front (there are even little pockets on the outside of the vest . . . you know, for trains and little hands) =0)

One of Isaiah's favorite features . . . the buttons Thomas, James, and Mavis =0)

The inside of the vest (yes, I cheated on the buttons . . . they are velcro - it just makes it easier to take on and off).

One of 4 pockets on the inside (two in front and two in back). The inside pockets hold the ice packs and are made out of a thicker material similar to a baby blanket - thick enough to hold the ice packs and thick enough to let just enough of the cool through.

Oh yeah, and the sore fingers and bloody stains . . . this vest really brings a whole new meaning to the phrase, "I put my blood, sweat, and tears into this." =0)

Update on Isaiah

Isaiah is still having a really rough time. In addition to the leg pain (which he has even complained of several times today, he also broke out in a rash on his face, neck, and chest. At one point, he started to breathe a little funny (not enough to merit an Epi, but it was starting to really worry me). As Beth pointed out (thanks for reminding me of this), some of the pain could be from the prednisone. On the other hand, it's not unusual to have bone pain along with masto. It could be a combination of both. All I know is that it seems to get a little better with Benadryl or Hydroxyzine . . . not completely better, but better. It also seems to get worse with a reaction. It's also interesting that he has actually paid more attention to it during the day. There were a few times today where he would actually grab his legs and cry today. I know it existed during the day before, but it seems to be more aggravated lately. (the red dot directly under his nose is one of those red, disco-light spots . . . a small one, but definitely one of those spots)

As I mentioned, he is having difficulty recovering from the last anaphylaxis episode. I was really hoping that he would wake up today well-rested and over the last episode. Instead, his eyes started swelling and he ended up with his right eye swollen (and even darker than yesterday), red disco-light spots, hives, and another rash on his face, neck, and chest. Even after the Hydroxyzine and Benadryl (which took a little longer than I had hoped to work), he still has the rash and a red, swollen eye. Trust me - I am overly vigilant tonight. The fact that the meds are barely helping these things is getting to me. I want so much to make all of this go away for him, yet there is nothing that I can physically do to make that happen.

The funny thing is, he still seems to take it all mostly in stride - he is irritable and cries at the drop of a hat. I feel so bad for him. Still, he has that amazing smile and giggle that remind me that it's going to be okay and that if he can keep smiling, so can I. It's amazing what you can learn from adversity if you'd just take a moment to step back and look at things from someonelse's perspective. Again, thankfully, God has all of this under His control.

One of Isaiah's lighter moments today . . . ah, my knight in shining armor . . . uh, helmet! =0)

As far as the blood work . . . hopefully we can get the ped moving on this tomorrow . . . or it's off to the local allergist to get the ball rolling. =0) I'm not one to switch doctors, but I think I may need to look into a new ped. =0)

I will keep you guys posted. Please, keep Isaiah in your prayers.

My Dad

I know I haven't posted on my dad for a while, so I figure it's probably about time to do so. There really isn't too much to report, which is both a good and bad thing. He is still in a lot of pain (in fact he has been rocking when he thinks no one is looking). I even caught him one time last week crying because he is in so much pain . . . and frustrated. He is noticing he can't do everything he used to and everything that he wants to.

He is also worried about Isaiah, which doesn't seem to help him much. Of course, if we weren't living in the same house, I think he would be going out of his mind. It's funny how much they need each other. =0) As I mentioned with Isaiah, please keep praying for my dad. Even though things may not seem better, prayer always helps.


I think that's all for now . . . =0)

. . . well, except that I am so glad that God keeps His promises and even gives us symbols to remember that His word always remains and never changes nor fails . . .


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