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)

VBS

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.

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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 . . .

Blessings!

Please Keep Praying

Just a quick update . . .

Isaiah still isn't feeling very well. He had his moments of normalcy today, but was awake a lot last night with leg pain . . . leg pain that lasted through to today.

I took him to the pediatrician this afternoon (insurance stuff after an ER visit), and the ped said that his tongue was still swollen (you could hear that by the way he was speaking), along with his eyes and lips. On top of that, Isaiah is extremely pale and looks like he has been punched in both eyes. Seriously, he looks like he doesn't feel good. The ped also added that there wasn't anything he could do. What?!? So, my child's tongue is swollen and his legs hurt him so badly he would rather be carried and there isn't at least one suggestion??? Nope. Just a, "this must be really difficult" for Isaiah and I and a, "bye." Okay, so I know there is only so much that you can physically do, but sheesh! Needless to say, this isn't the ped that we like to see. =0) There is at least one person in the office that we like to see, who seems to be at least somewhat gentle with her words.

Anyway, the allergist in St. Pete is worried (and a tad ticked that the ped didn't do labs and at the last remarks to us before he walked out the door) - he said that he doesn't like how this last episode is lingering like it is. Isaiah usually recovers rather quickly - usually within 6 to 12 hours. He is concerned about Isaiah's blood counts. At first, the doctor made it sound like we were going to go straight to the hospital after we got off the phone with him to have Isaiah's labs . . . thankfully, we can wait until tomorrow morning, when we go back to the ped's office to get a referral to go to the lab. He started throwing a few words around here and there, but that's beside the point. Please keep praying for Isaiah. The leg pain and such is just so difficult to handle - there is very little consoling Isaiah when his legs hurt that badly. Somehow, the little guy still gives you a smile and a giggle that could melt a heart of stone. I just hate to see him so quiet and miserable. I would rather have a "tornado" to clean up after than my baby be so silent. Okay, so ask me that when Isaiah's feeling better and I may have a slightly different answer. =0)

I am so glad God is in control and that He has all the answers and remedies that we'll ever need.

I promise I do have photos to post along with details about VBS . . . it's coming, I promise. =0) For tonight, I need to sleep. =0)

Another Epi and Another ER Visit

Isaiah had another rough evening that required an Epi pen and a trip to the hospital - with no known/obvious cause (not all that unusual for Isaiah). This time he was awake enough to comment on the fire engine and ambulance that came to see him. =0) While I don't like the idea that he anaphylaxed again, it was good to see him more alert this time - we caught it early and he was getting his bedtime doses at about the same time he anaphylaxed (they would have started working at about the same time the ambulance arrived). As with the past few episodes, he had issues with his heart rate and BP again, but at least he was responsive. He didn't even vomit this time - he had edema in his face (lips, eyes, hands), the disco-light spots, flushing (everywhere), a slight fever (not unusual with anaphylaxis), leg pain, tummy pain, and breathing issues (he had the early sounds of rales - I have no idea if I spelled that correctly). The Epi seemed to handle things pretty well this time and Isaiah seemed to know that he wasn't feeling quite right - he actually told us before he started vomiting!!! Isaiah never ceases to amaze me.

I am quite frustrated that there isn't more we can do (physically) to prevent these episodes. It's a helpless place to be. If all the episodes were like this one, it might not be so bad . . . if you are the type to compare things. It's just that this episode might have been just as bad had it not occurred when it did and had we not acted faster . . . completely God that we caught it so quickly. I can also say that His peace helped me get through without a tear - even Isaiah didn't cry! He's such a little trooper!!! God is working in this little guy for His glory.

During VBS this week, we briefly discussed the verse in Mark that talks about Jesus healing the blind man. When people asked Jesus who had sinned to cause the man's blindness, Jesus answered that it wasn't because of anyone's sin, but that God was using the blindness to glorify Him. Of course, Pastor Jay was talking about sin not directly causing the man's blindness, but the fact that God was using this man's ailment for His glory that stuck out to me. I have to admit that tears were in my eyes just thinking about this. It's amazing how God works in our lives and uses even those who cannot communicate just yet to reveal Himself.

I'm not even going to talk about whether or not God causes the illness, but I'm amazed at how God can take something so negative and use it for something positive. Honestly, I have no desire to ask God why - He knows and that's good enough for me. I'm not so sure I could handle His answer. There are definitely times where I want to be angry at someone for my baby going through all of this - the mother in me makes me want to attack whatever is causing my baby pain. I want to blame someone for everything Isaiah is going through. The hardest part is that there isn't anyone to be angry with or to blame (you know, physically at least). =0) Of course, I'd be glad to kick satan's butt for this (usually I use the word tush, but I'm not exactly keeping this kid-friendly here), but I know that there is more to this than just his horrible plan for my son. I guess that's where being angry at this "masto" comes in. Sometimes I want to scream at this "masto". Oddly enough, however, this "masto" is really a bunch of cells that exist in everyone's body . . . Isaiah's are just a little over-reactive. Something created to work properly that just don't want to work the way they're supposed to.

My brain hurts right now. I am tired, but I feel like I am on alert. Grrrr, adrenaline. =0) I will post more later - especially about Isaiah's fun time at VBS!!!!! =0) I also have some pics to post . . . but since my brain is ready for rest, that'll have to wait until later. =0)

Please keep Isaiah and my dad in your prayers (and thank you for praying)!!!!

Just so you know . . .

I haven't fallen off the face of the planet. =0) I have been soooo busy recently that I barely have time to do much of anything.



The biggest reason is that I am making a cooling vest for Isaiah. Since I am afraid of electric sewing machines (it's the whole breaking and flying needle thing . . . and maybe also the distraction and sewing a finger to a project thing) =0), I am hand-sewing the vest. I guess I should explain the cooling vest idea. A cooling vest is usually used for people with cystic fibrosis, but some of the other masto moms were discussing how it could be beneficial with our masto kiddos. This vest has pockets for cold/ice packs to keep the patient cool (or a tubing system for ice water . . . but you need a cooler and the pump . . . there is also one that you soak with water). Since I don't like to walk around in wet clothes, the last one was out - I couldn't make Isaiah wear something I wouldn't want to wear. So, I began looking for this vest and found out that they are soooooooooo expensive. Since I can't see spending so much for something that Isaiah will quickly outgrow, I decided it would be much cheaper to make one . . . and now I am poking myself with pins and needles while making this vest. =0) Yeah, my fingers hurt. But it's worth it . . . I hope. =0) There really is no guarantee that it will help, but at this point, I would love Isaiah to be able to go outside for more than a minute without flushing and leg pain the rest of the day. I would love to see him rash-less, or at least as close to rashless as we can get at this point.


Isaiah has been flushing quite a bit recently. He even flushes going from our front door to the car - maybe 10 feet? Flushing leads to leg pain which leads to irritability and sleeplessness. I feel so bad for him . . . and tylenol just doesn't cut it. I have been trying different things (as suggested by the other masto moms), but it just seems like he's just overly sensitive right now. The red dots appear on a daily basis now and he is getting the rashes again. All of this combined leads to sleepless nights for him and for me. Even though Isaiah handles it well (he acts like he slept all night), my brain just doesn't work. Sometimes I feel like I have to remind my legs to walk. =0) It's hard to function on little sleep when you have to tutor and do your own homework . . . the late nights are really starting to get to me. Then there is Isaiah . . . Isaiah is irritable. He can be the sweetest little guy one minute and be so grumpy the next. He still manages to smile, though. I love that smile and giggle.

I'll post some pics of the vest when I get it finished - it has to be done this weekend because VBS starts next week. That's another story . . . I am so thankful that there are people at church who are going out of their way to make this VBS a wonderful experience for Isaiah (I have to say that I was feeling quite apprehensive about it at first, but I am feeling quite at peace now). It's hard to include Isaiah in group events beacuse of everything that he's allergic to (he's bound to come into contact with something that could cause another anaphylaxis episode or at least an allergic reaction of some kind), but they are doing so much to include him in the activities (thanks, Annie for thinking of things I didn't even think about). =0) Thank you guys sooo much! I know it's a lot of hard work, but I can't tell you how much this means to me . . . and it will mean a lot to Isaiah as well!!!

Well, that's all I have for now . . . I think. =0) Blessings!

Wordless Friday???? =0)

Okay, so it can't possibly be a Wordless Wednesday . . . and since it's not a Flashback post, I can't make it a Flashback Friday . . . so Wordless Friday will have to do. Maybe it won't necessarily be a completely wordless post (not all my doing), but I think since I'm a couple of days off the whole wordless thing doesn't exactly matter, right? =0)
So, on to the good stuff!!! (there are a lot of videos, so you will want to turn off the sound/the music on the music player at the bottom of the page) =0)

My little goober . . .


A spaghetti pic . . .


Watermelon pics . . .


My giggling little man . . . =0)

My silly little man . . . (who loves to see himself on the camera) =0) . . . oh, yeah, and Hurricane Isaiah struck again (don't look too much behind him - the mess is an illusion) =0)

"Take it to da top an cha, cha, cha!"

Isaiah and the toy aisle at Target . . . and the silly Jack-in-the-box (he played with those things for 20 minutes and jumped every time!) =0)

And of course, an update . . .

My dad is not feeling so good again. This time, in addition to the yucks, he is having problems with his ears - he has inner ear issues, too. He's not sleeping at night (because of severe pain), and he is messing with the thermostat . . . again. =0) He usually gets caught, though . . . except for the few times he changes the temp in the middle of the night, which keeps Isaiah up itching and with leg pain. I think we have the thermostat issues under control though . . . I think. =0)

Isaiah is doing good. He is having flushing issues again, along with those red spots that come and go. Last night he had several on his face and torso, which eventually changed to a few different spots on his torso and a huge one on his cheek . . . after his meds. He is also having problems with leg pain again. He is eating well, though - he has the cutest chubby cheeks! I think he is around 47 or 48 pounds (when he began the steroids he was around 38 or 39 pounds). =0) He looks good though - not at all too heavy for his height. He has grown taller as well, in spite of everything that has happened over the last month. God never ceases to amaze me!

As far as the rain where we live - we are not in an area that has flooded. We had a bit of rain today, but nothing at all like we had this past week. Things here were relatively mild in comparison to the surrounding areas. We did have a tornado warning earlier this week, but we had nothing more than loud thunder. God is good!!!

I also found out my hard drive is severely damaged. Because of that, I will not be able to recover my files from the hard drive unless I send it to a place with a clean room (where they will take the hard drive apart and save individual tiles???). Anyway, I found out that this will be a tad pricey. =0( Almost too pricey. I'm not sure how I'm going to get those files, but I'm praying God sends a solution. As far as the computer - I need a new hard drive . . . aka, HP is going to send a new computer. =0) The problem was not caused by a virus or anything I did to the computer, but from a defective hard drive or fan, so HP has to replace it . . . by the way, the computer was purchased 7 or 8 months ago.

That's all for now! (I think) =0)

Another (Mostly) Wordless Wednesday =0)

A picture from a little bit ago

(Isaiah is in the dark blue sweater with white and orange stripes on his shoulders)

Another pic from a little bit ago . . . =0)

Just a few days ago =0)

Happy Mother's Day!!!

(This has to be one of my favorite first pics of Isaiah and I together - Isaiah's first Mommy Kiss) =0)

Before I was a Mom

Author Unknown*

Before I was a Mom,

I made and ate hot meals,

I had unstained clothing,

I brushed my hair every day,

I had quiet conversations on the phone,

I slept as late as I wanted and I slept all night long.

Before I was a Mom,

I never tripped over toys or forgot words to a lullaby. (nor thought to make up my own) =0)

I didn't worry whether or not my plants were poisonous.

I never thought about immunizations.

Before I was a Mom,

I had never been puked on.

Pooped on.

Chewed on.

Peed on.

I had complete control of my mind and my thoughts.

I slept all night.

Before I was a Mom,

I never held down a screaming child so doctors could do tests.

Or give shots.

I never looked into teary eyes and cried.

I never felt my heart break into a million pieces when I couldn't stop the hurt.

I never got gloriously happy over a simple grin.

Before I was a Mom,

I never held a sleeping baby just because I didn't want to put my baby down.

I never sat up late hours at night just watching my baby sleep.

I never knew that something so small could affect my life so much

or make me feel so important.

I never knew that I could love someone so much.

I never knew I would love being a Mom.

Before I was a Mom,

I didn't know the feeling of having my heart outside my body.

I didn't know how special it could feel to feed a hungry baby.

I didn't know that bond between a mother and her child.

I never knew I could love someone so much.

I didn't know that something so small could make me feel so important and happy.

Before I was a Mom,

I had never gotten up in the middle of the night every 10 minutes to make sure all was okay.

I had never known the warmth,

the joy,

the love,

the heartache,

the wonderment

or the satisfaction of being a Mom.

I didn't know I was capable of feeling so much,

before I was a Mom ...

*Author Unknown: I looked all over the web and couldn't find the author, but found several sites saying the author was unknown . . . as well as several versions of the same poem =0)

Happy Mother's Day to Nai-Nai and Grams (wonderful mothers), and every other mom out there who reads my blog =0)

The very first time Nai-Nai and Grams held Isaiah =0)