Wednesday, May 28, 2008

Frustrated


I am so frustrated right now. It looks like the one medication is making Isaiah irritable and moody. He was crying for no reason, and overall moody. I took him off of it, and put him back on the "old" one (hydroxyzine). He hasn't been sleeping well, and he seems like he's in pain. He cries out in his sleep, and lounges most of the day. I hate seeing him like this. Isaiah is usually full of energy - jumping around, talking incessantly, running when he isn't jumping, screaming for Thomas the Tank engine, tormenting the poor fish. =0)

Beyond that, I have been reading the e-mails sent from mastokids.org. While they talk about things Isaiah is going through (and even things we saw in the biopsy report), I just don't want to hear it! I don't want to hear, much less accept, that Isaiah's just going to be this way - that he's going to have this for the rest of his life. I don't want him to have to take 10 meds a day to stop the next episode from being as bad as the last - to make sure the Epi works the next time. I don't want to accept that "spots happen". I don't want to see Isaiah itch and scratch. I don't want to see him cry and not know what's hurting him. I don't want his speech to be affected.

If this were a physical battle, I would so be punching and kicking satan's head right now. I would be doing everything in my power to beat the snot out of satan for putting my little boy through this. Even in saying that, I know that I alone lack the strength and power to do that - at least I wouldn't be able to do that on my own.

Last night, we were watching the healing revival in Lakeland, FL (it's on God TV if you want to watch it, and MSNBC will be talking about it tomorrow on their website). It's weird, and somewhat stupid, but I sit and watch in anticipation - just thinking that the minister will mention something about Gabe or Isaiah. Well, last night the minister said that he had a vision of a little boy with leukemia. I immediately thought of my sleeping baby - the biopsy mentioned something about increased lymphocytes. Please know that Isaiah was not diagnosed with some kind of leukemia, but it still stood out to me. Not even 3 minutes later, Mrs. Baisden (Pastor Clark's mom) called from the service and asked if we received the word of healing. In tears and in shock (and in faith) I said yes. Mrs. Baisden could have meant my dad or my son, but either way - yes, Lord, let it be so. It was so weird, yet so encouraging. I am hoping that we can go to the church sometime this week. Not that God can't move where we are, but why not go?

Well, it's late and I'm tired, and I find myself writing another novel. Thanks for letting me vent. =0)

Love and God's blessings on you and your families,
Kelly

Thursday, May 22, 2008

Biopsy Results



We finally know the biopsy results . . . it's not great news, but it's something we already knew. Isaiah was diagnosed with Mastocytosis. The biopsy showed increased levels of mast cells within the lymphocytic infiltrate, and the head dermatologist (along with her fellow - a doctor-in-traning) confirmed the diagnosis. The anaphylaxis episode was directly connected to the rash (which explains why it's better since the episode). Now we have a new list of things to avoid, and more testing ahead. Be cautious with exercise, extreme temperatures (such as heat and cold), cold and hot drinks, no motrin, no asprin . . . . the list goes on and on.



I have to say it's reassuring to finally, after 2 and a half years of this, have a diagnosis. It's also strange that Isaiah's first allergist, Dr. Hunter (in Frederick, MD in case you're interested), pre-diagnosed him on the second visit! It's just that the diagnosis doesn't offer much consolation. The diagnosis says that Isaiah will never outgrow this, it can't be cured, and that only the symptoms (mainly the outbreaks) can really be treated. However, I know what God's diagnosis is, and that God can "cure" him. We are being referred to more doctors, since this is way over the current doctors' heads (we will have a call about that later). I also have a stack of papers to read - research the dermatologist gave us. I have to say that when the fellow entered the room, I was a little freaked out - the fellow follows when there's something unusual going on that they need to learn about. =0)



So, now we wait. Wait to get in to the educational institutions, wait for a treatment plan, continue to wait for God to move, etc. =0) Well, I will spare you a novel, and say that I have to go - I have to start lunch for Isaiah. =0)

If you want to know a little more about mastocytosis, you can visit www.mastokids.org or http://www.tmsforacure.org/ .

Love & Blessings,

Kelly

Tuesday, May 20, 2008


I guess I forgot to mention when Isaiah's next appointment is. =0)

The appointment for the biopsy results is on Thursday. I will try to post something as soon as I can. Just keep praying for him - he's still itching, still has the rash on his feet, legs, hands, and face. In fact, he had pictures taken the Sunday after the biopsy, and the rash showed up in every picture - from the bright red spots to the white spots left over from the strong topical steroids. Another interesting thing is that the photographer is from Cleveland, TN! His wife even attended Lee and is a teacher in one of Cleveland's elementary schools. Small world, huh? (If any of you in Cleveland are interested, his sutdio is called Antiquities, and it's located behind the Citgo station, across the street from the "new" YMCA). =0)
He is eating a little better, and from the last pediatrician's appointment (the follow-up from the hospital visit) he weighs 39 pounds - just one pound shy of where he started out. He has definately grown in height, too. It's funny how he doesn't look like he has any health issues (apart from the rashes) - God has kept him healthy and nourished.

Well, that's all for tonight. =0)

God's Blessings,
Kelly

Friday, May 16, 2008

Biopsy Update


The biopsy results have come back, but I do not know the results. We were supposed to have an appointment todya to discuss the results, but the appointment was rescheduled with the head doctor at the office (the dermatologist we were seeing is a physician's assistant). It doesn't sound too good - they canceled the patch testing and said we needed to see the head doctor.

I have confidence that God is still in control, and that whatever the results are, He's got it covered. As scary as all of this is, I still have peace and hope. Please continue to pray for Isaiah- it looks like we are going to have more testing ahead.

Blessings,
Kelly

Tuesday, May 13, 2008

Biopsy

Just a quick update . . .

The dermatologist's office called at 4 to tell me that the biopsy is still out. The lab decided to do extra stains. I have no idea when the results will be back, and I have no idea what they are testing for now. I guess I'll have to wait and see.

I heard a song in the car that really encouraged me . . . "Never underestimate my Jesus . . ." I think it pretty much speaks for itself. =0)

Allergist Appointment


Okay, so we had another appointment today. =0) The doctor couldn't do any testing because of Isaiah's episode, but she said she might do testing the next time she sees him (in a month). She said that he looks good, and his lungs sound very clear - very good.

Since he is still having issues with this skin rash, she replaced one of his medications with a stronger one. I'm not too sure I am comfortable with the new med, but I'm willing to give it a try. Hopefully, it will help him and not cause any other problems. I think it's called Doxepin or something like that. It's supposed to replace the Hydroxyzine (at least it's not an addition to the 11 he already takes). She also gave us a different kind of Epi pen (since the last episode wasn't completely stopped by the one he previously had). I hope all of this makes sense - I'm just really tired.

As far as the biopsy - we still haven't heard anything. I'm guessing I will find out either today or tomorrow, so I will let you know as soon as I hear something.

And . . . . . a little update on the fire situation . . . . Yes, we do have fires around us, but they aren't too close to us. We are in Brevard County (one of the counties that under a state of emergency), but we are in Northern Brevard, the fires are to the south and the west of us. From what I've heard (which isn't a whole lot), the fires were set by an arsonist in Melbourne and Palm Bay, as far as the ones in Daytona . . . I don't know. I know that between 57 and 75 homes have either been damaged or destroyed, 1 fire station has been destroyed, and thousands of acres have been effected/burned. Please be praying for rain. You can't see plumes of smoke from where we live, but if you go about 15 to 20 minutes south of us, you see clouds of smoke. There isn't too much of a smell either - the sky is a little tinted, and there's a hint of smoke. In the past month or so, we have had controlled burns all around us. We were told that if they do a controlled burn in the sanctuary behind us, we would be notified so that we could take Isaiah out of the area until they're finished.

Well, that's all for now. =0) Have a great day & be blessed!!!!

Love,
Kelly

Thursday, May 8, 2008

Hospital Trip


Well, Isaiah had an anaphylaxis episode last night (Wednesday) and had to go to the hospital. We had to use the Epi pen, so it was pretty bad. So far, it appears like it was one of those unexplained attacks - he didn't have anything new to eat, and he hadn't eaten anything else.

He seemed fine (he was running around in the living room), then all of sudden he stuck his fingers in his mouth like he was choking, but it looked like he was scratching. When I looked in his mouth, I saw patches of rash. Then he stared coughing funny and breathing funny. His lips were swollen and he had hives on his cheeks and lips (probably in his mouth as well). It happened so fast.

The Epi pen didn't help as much as it should have either - even after the ambulance got here (about 10 minutes after the Epi), he was still having breathing problems and was falling asleep. His heart rate was over 150 BPM (from the Epi), and his blood pressure was really low (anaphylaxis). It was so scary! He even had a breathing treatment in the ambulance (which he didn't even fight - very unusual).

Once we got to the ER, Isaiah ended up throwing up on me, but they were able to get an IV in, and administered some extra antihistamines. His heart rate came back down, and his blood pressure came back up, but they decided to admit him for observation. It took him a few hours to return to his old self . . . well, almost old self - he was still itching a lot and hives were continuing to break out on his tummy and back.

After he was back to normal, he decided that his IV machine was a robot that needed to walk with him everywhere in his room. =0) He was so funny! Even when the doctor took him off the IV this morning, he still wanted to walk around with his robot!! He even got upset when they plugged it in the wall - "It's not fair. Want Robot walk with me." He got over it fast enough when he found out the door was open! =0)

We have an appointment with the dermatologist on Friday (to remove the stitches), as well as an appointment on Tuesday (with the allergist), and another one with his pediatrician (who saw him this morning at the hospital). Just keep this little guy in your prayers - this episode happened so fast. Hopefully, we will find some answers . . . or God will heal him. The unexplained episodes are the hardest because you have no idea how to prevent them.

It was so awesome to see God working last night! The nurses in the ER got together and prayed, even the doctor prayed. When we got to the floor last night, we even had a nurse who prayed for us and was just so encouraging. It was amazing to see my nephew, Bradley, pray - he was praying for Isaiah even after we left for the hospital. Even the peace that I felt - I was freaked out, but felt so calm at the same time. I don't think I would have been able to give Isaiah the Epi (because my insides were trembling) had it not been for the peace of God. It's not the fact that it's a medication for a scary situation, it's the fact that it's a huge needle and it hurts and burns - I hate needles, and I got nauseous just thinking about giving it to him.

Well, that's all for now. =0)

Love & Blessings,
Kelly