Wednesday, May 27, 2009

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!

Thursday, May 21, 2009

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)

Thursday, May 14, 2009

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)

Sunday, May 10, 2009

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)

Saturday, May 9, 2009

Flashback Friday

My baby, my dad, and my Martin. =0) (literally May 8 . . . 2006)

Pumpkin Face =0)

My boy and his tricycle (May 8th, 2007)

My brave little man (May 8th, 2008)

May 8th, 2009:

I heard Isaiah singing his new favorite song and decided to catch it on video. When I got to the porch, this is what I found . . . (you might want to turn off the music player at the bottom of my page to hear Isaiah sing) =0)

. . . the toy bins emptied . . . every train he owns out on the train tables . . . and Isaiah driving around in contentment in his big red car. =0)

"I got-a joy, joy, joy, joy down in my heart, YAY! Down in my heart, YAY! Down in my heart."

I love my little goober! =0)

Thursday, May 7, 2009

Appointment with All Children's

I have been putting this off since last night because I just wasn't quite sure of what to say. In a way, I knew what kind of response we were going to get from the doctor . . . but I was really hoping to hear something different, an easier solution to this masto thing.

Isaiah's appointment was less than encouraging. The doctor basically said that there was nothing more we could do for Isaiah apart from treat the reactions as they happen. There is nothing that will really help to control the reactions, we just have to hope that they don't get any worse or more frequent. A while ago, I mentioned another drug that might help Isaiah: Xolair. Xolair is no longer an option for Isaiah - Isaiah's sensitivity is just too severe. The doctor also explained that after one year of shots is over, within three months the symptoms will return and could be worse than they were to start out with. The only way they will put Xolair back on the table is if Isaiah's reactions become worse or more frequent . . . it will only give us one year of peace until we can figure something out. Obviously, we would have to resume the injections within 3 months if we can't figure out what to do next.

Another glitch, so to speak, is that we can only use Xolair for 3 or 4 periods of treatment. After that, the shots become too risky. Some of the side effects are also not so nice either as they can cause hair loss and such. His thought was that what's the point in putting Isaiah through all of that when they won't help to begin with. He's also at the point where the shot could cause things to get worse very quickly - he could react to the shot itself (he is that sensitive).

Basically, we will only treat the reactions when they come up (back to where we were). He also mentioned that he thinks the reactions Isaiah had a couple of weeks ago weren't from the anesthesia, but more likely from the procedures themselves - the biopsies scratched, his mast cells reacted. The reactions were held off by the Decadron (steroids) long enough not to happen during the procedure, but his body was still in attack mode once they wore off.

The doctors words felt like weights, and I felt like I was hit in the stomach. He didn't say Isaiah was going to die anytime soon, but said that the reactions are very, very serious and can cause things I don't even want to think about. The fact that Isaiah took longer to recover from the second episode wasn't surprising to him, but concerning - his body still wanted to attack something that didn't exist and we were forcing his body to stop.

His diagnosis was much more firm this time and he added that Isaiah is also "just highly allergic and his mast cells are just too sensitive." As far as a bone marrow biopsy, he said we just won't go there unless Isaiah's labs ever show that it needs to be done. Right now, there is no need to upset Isaiah's system unless it's absolutely necessary.

For now, I'm trying not to think about it all too much - as a good friend said, the details are just details, the only thing that really matters is what God has in mind and what He is going to do. God has Isaiah in His hands; He has this under control and He knows what He's doing. I also know God has more plans for this little guy in this life. Isaiah isn't suffering, and he is (for the most part) very healthy.

Isaiah is eating well . . . steroids can do amazing things! He has even gained 5 pounds back that he had lost! He doesn't look as much like a skeleton anymore. =0) He even has some chub in his cheeks, again! =0) He also seems to have an endless supply of energy - along with a smile, twinkle in his eyes, and a giggle added to it! He does have periods of crankiness, and when he is cranky, he is almost impossible . . . but the smiles make up for all of it. I can't tell you how many times I've heard someone say, "he looks so healthy." Even his local allergist loves to say that. Thankfully, he does. In fact, he looks so good that you wouldn't even think he has masto or these allergies that are worsened by the masto. God has done an amazing thing with Isaiah - he shouldn't look this healthy.

This scripture showed up in my e-mail a couple of days before our trip to All Children's: "Be joyful in hope, patient in affliction, faithful in prayer" (Romans 12.12). There is peace and joy in the hope He gives . . . as much as I want to fix Isaiah's health, I know there is nothing I can do except be patient . . . and I'm not giving up on praying for Isaiah's healing. Thank God He is God and knows what He's doing! =0) God's plan and His way of doing things is much better than anything I could ever want or do. We can walk this road kicking and screaming at the top of our lungs, or we could walk with peace, hope, joy, and patience and learn something along the way. Honestly, I find something else to be thankful for every day I get to spend with Isaiah. Every day he is healthy is because of God . . . every day Isaiah lives, I live, you live is because of God. I'm so glad He holds the future. I can't help but be grateful that God has this under His control.

Isaiah 58.8-9a: "Then your light will break forth like the dawn, and your healing will quickly appear; then your righteousness will go before you, and the glory of the LORD will be your rear guard. Then you will call, and the LORD will answer; you will cry for help, and He will say: Here am I."

Ephesians 3.20: Now to Him Who, by (in consequence of) the (action of His) power that is at work within us, is able to (carry out His purpose and) do superabundantly, far over and above all that we (dare dare) ask or imagine (infinitely beyond our highest prayers, desires, thoughts, hopes, or dreams).

Romans 8.37: Yet amid all these things we are more than conquerors and gain a surpassing victory through Him Who loved us.

Romans 12.12: "Be joyful in hope; patient in affliction; faithful in prayer."

Sunday, May 3, 2009

Pray for Emerson White

There's a new button on my page - a button for Emerson White. If you go back through my older posts, you will see prayer requests for this beautiful brown-eyed little girl. She has endured 2 multi-organ transplants, her second being her most recent - 17 days ago to be exact. Not only is Emerson is fighting to recover from the trauma and complications of the second transplant, she is now a serious infection. Please remember to keep her in your prayers as things don't "look" good for her right now. Thankfully, we serve a God who doesn't work based on appearances; a God who calls things that are not as though they are. Please also remember her family during this time as well - her mom is with her in Nebraska, her dad and two older brothers are at their home in Colorado. I know for her family, this is difficult to endure - I can't imagine the distance between the hospital and home making that any easier.

If you want to know more about Emerson, please click on her button or any of the links in this post to read her journal.

Friday, May 1, 2009

Flashback Friday

I came across this photo just the other day . . . I think I was about 3 or so . . . Danielle (the little girl in red) was in Kindergarten. I used to love waiting with the other daycare kids at the bus stop. =0) Yup, I used to be a blonde. I'm so glad my hair changed colors as I got older!!! =0)

Here's another picture of my brother and I with 2 other daycare kids . . . Jen, Kimmy, and I used to get in so much trouble! =0)

Ahhhh, the '80's. =0)