Tuesday, January 13, 2009

All Children's Appointment & Other News

I keep putting this off (or keep getting interrupted), so I will finally post this. =0) I guess I just don't want to sound so . . . . bah humbug or gloomy. But, since you will need to know a little information in order to pray, and there are at least some of you waiting for an update, here it is . . . an update. =0)

We finally returned from our appointment. I say finally because we had to drive through rain and lots of traffic on our way home. We even had traffic on our way there (which really was a first). I wish the trip had been longer (as in staying at the hotel another night after the appointment), but we had to return home to return to normal life - so much for relaxation, huh? =0) It just would have been nice to go back to the room after the appointment instead of facing a hectic drive back from the hospital after an appointment that wasn't all that encouraging. Not that it was horrific news (I know, and in some ways don't know, it could have been worse news), but the news wasn't anything that said Isaiah was getting better.

Anyway, the news wasn't so appealing. This has been one of the most negative regular allergist appointments Isaiah has had by far. It was frightening to learn that Isaiah has mastocytosis and even more frightening to find out about all the other allergies. However, when you're told that your child's IgE levels just keep increasing and that things are probably going to get worse, that's when you just want to scream. Worse? You're kidding, right? Why are his levels increasing instead of getting better? No idea. The doctor was just as confused as we were. He did say to have an endoscopy - they can check for mast cell activity and eosinophils (for an eosinophilic disorder not found in blood tests). So, now, a trip to the gastroenterologist is in the makings . . . at least there is one in Orlando . . . I hope.

The doctor believes that Isaiah's counts will not come down since they seem to continue to get worse. He says that Isaiah won't grow out of this. He also says that Isaiah should not attend school, but have home bound services (basically, it's homeschooling). If you remember, I have already been told that if Isaiah were to attend a public school, I would have to follow him around all day (this was by the school district since teachers cannot give Epis any more and it would be too risky to wait for the school nurse). We have even heard this from the doctors, but not as definite as it sounded yesterday. It was usually mentioned casually (apart from the warnings of no daycare), but this was direct. I asked a question and received a firm answer.

He talked about putting Isaiah on Xolair, a drug approved for adults, but not children under the age of 12. Isaiah qualifies for the med, but it means he will have to get a shot every two weeks for up to a year or more . . . or until God heals him. The Xolair will help the IgE from causing allergic reactions and asthma symptoms. The doctor also spoke of putting Isaiah on Prednisone for much longer than 2 months. I really don't like that idea, but the idea is to keep him anaphylaxis-free (that part is something I like). Xolair has just as many nasty side effects as Prednisone, including hair loss, anaphylaxis, increased risk of infections, and

So, now we pray. Pray that Isaiah doesn't have a reaction this month or next. Pray that his reactions don't increase anymore. If he does end up in the ER for anaphylaxis this month or next he will be put on a shot of Xolair every two weeks or Prednisone for a while (more than two months . . . think an extended period of time).

I was okay with all of the information until my brain began to process all of it. The negativity of the appointment wasn't helping, either. It wasn't the doctor, but his concern for Isaiah's health.

Other News

My dad is having a rough time, again. Today he barely made it to his chair (he has his chair that no one, but no one sits in) before he fell asleep. My mom and I both thought it was strange, but my dad is known to sit down and fall asleep these days. Even a bit ago, if he sat down for too long, he would be rattling the windows with his snores (sorry, dad, but you know it's funny). =0) He doesn't snore anymore, but he sure can sleep.

Anyway, he was completely asleep when he woke up (sort-of) and sat with his elbows on his lap and head in hands breathing very hard. We thought he was in pain, but when we finally got him to talk he just kept saying, "You wouldn't understand." I thought maybe the pain intensified because he was feeling cold, so I got his electric blanket and plugged it in. By that point, he was out on the back porch waiting for tea. He did have a small conversation with my mom a little later about what had happened. When he came in from outside, he wasn't feeling well - he felt horrible. He said that he was scared and didn't know if he could make it to the chair, let alone in the house. After he sat down, he was just so tired he couldn't keep his eyes open. When he woke up from his nap, he said that he was completely scared to fall back asleep. I won't go into complete details, but he was really scared. So scared that he hasn't fallen back asleep yet and keeps coughing, moving, etc. to keep himself awake.

Please keep my dad in your prayers. He is worried that the leukemia has gotten worse, but refuses to tell the doctors (or anyone else who calls . . . if you know him, you more than likely know why he won't tell you). He doesn't even tell me what's going on unless I catch him crying in the middle of the night. He's in a lot of pain and he's scared (and the sweetest side I've seen in my dad, he's scared about leaving my mom behind, alone). It's strange to hear your parents talk about death and the unthinkables, especially when they're ill. I'm sure my dad's fear is real and not just imagined, but please pray that he finds peace even amidst the pain and the uncertainty of this disease.

I am so thankful that God is in control. I did think for a moment of how I could fix things - what could I research that might make things better? I partially wanted to say, "No, God, I'm not okay with this." I hate to see my family in pain - I hate to see others in pain. However, telling God that His plan isn't perfect wouldn't have solved a thing. What do I really know about perfect, anyway? I still have to let go - I can't fix this. I can't fix Isaiah, I can't fix my dad, I can't fix the people on my prayer lists - I'm far from supermom or superwoman. That's God's job. I pray for them, He "fixes" them as He sees fit. It has nothing to do with me, but His will and perfect plan no matter how painful or strange it may seem at the time.

Cancer stinks. Allergies stink. Mastocytosis stinks. Life doesn't. No matter how bad it gets, there is still something sweet about life. Even sweeter (and grander) still is the God we serve! How awesome is He?!? =0) I mean, really - this is the God who formed us in the womb, who knew us before we even existed on this earth. He obviously has a plan, so all we need to do is rest in His plan . . . easier said than done, but still better than fighting against His will. As I have said before, I still pray for Isaiah's healing, for Dad's healing, for everyone else on my list's healing. That won't change. It's just that the details are left up to God.

Well, that's all for now. Isaiah has another appointment next week with his local allergist (who will be giving these $3,000 shots should that be necessary). If these shots are to happen, please pray that the insurances will agree to it - he is 3, not 12, and insurances don't like the idea. I know Isaiah's doctors will fight for him, so I'm not worried about that - I just hope the insurances will be helpful.

1 comment:

stitching under oaks said...

We're praying for Isaiah and you and your dad and mom! Please know you all are in our thoughts and prayers.