Biopsy

Hi guys!

I just wanted to leave a quick note on how the biopsy went. It was a little more than I expected - instead of being a scraping of skin cells (or even a shaving), it was a punch biopsy. It's the kind of biopsy that they take a thing that almost looks like a pencil without its eraser, and literally punch your skin to take a sample of it. The doctor took the biopsy from a spot on the inside of his knee, since his feet and hands would be too complicated and sensitive. Isaiah was numbed, but conscious for the procedure. He did so well - such a brave guy. The numbing was the worst part, but we couldn't tell if he was totally numb, so the doctor gave him a little extra to make sure. Isaiah has 2 stitches, but is doing well. He did such a good job - I am so proud of him. Even the doctor shed a few tears - something that was totally refreshing to see.

Well, I am off to bed!
Goodnight!
Love,
Kelly

Please be praying . . .

tomorrow Isaiah has an appointment with the dermatologist for a skin biopsy. I know it's a simple thing, but I'm sure it still hurts a bit (and scary for a toddler). Please pray that Isaiah has peace during the procdure, and that he is almost oblivious to what's going on (he has gotten really touchy about where the rashes are). He's so strong! I don't think that the dermatologist will do the patch testing tomorrow - I think that will be in another week or so (the patches are placed on the skin for 2 days, then test results are read on the second day).

The biopsy will tell us how many mast cells are in the skin's surrounding blood vessels, and may even tell us what type of eczema/dermatitis this is.

I forgot to mention - Isaiah lost a portion of one of his nails today (because of the rash). His nail didn't form correctly, and was really thin. He was scratching today, and the nail cracked where the most damage to the nail was. It's just so weird to see him go through all this. Just a few months ago, I could put a little hydrocortisone on a small breakout and it would be gone the next morning. I hate seeing him itch so much. I just keep looking forward to the day where God totally heals him, and he can have a normal birthday cake with normal ice cream. No more unexplained rashes, no more tummy aches because of allergies, no more hives, no more worries about anaphylaxis. No more insanely long grocery store trips that last at least an hour and a half because you have to read every ingredient on every label, even if it's the brand you always buy - just because you never know when ingredients or factories will change. No more insane grocery bills, either. The bright side of it all is that I've never seen a toddler eat as healthy as Isaiah - what toddler eats brussels sprouts, asparagus, and avocados? =0) I can only hope that he continues to eat this healthy. We are also so blessed to live in a country where it's easy to find foods that Isaiah can eat, even in a state/city where there are health food stores close by that carry foods safe for Isaiah. Even if there weren't a store we could go to, we could go online and buy most of the foods there.

Well, I will let you know how things go - it's about time for me to go to sleep. =0) Have a great evening!

Love,

Kelly

New Allergist Appointment

Well, I am a little overwhelmed by information . . . and new medications.

Isaiah did well off of all of his meds - thanks for your prayers, and a HUGE thanks to God for His protection. He developed more of a rash on his face, he didn't sleep, and he had some wheezing, coughing, red eyes, runny nose . . . the usual allergy stuff. Oh yeh - his lost his appetite, too. But, he didn't have an anaphylaxis eposode, and didn't need a nebulizer treatment. YAY!

Today's appointment went well - this allergist seems to be willing to treat Isaiah, and isn't intimidated by the task. She seemed confident that we could finally get some answers.

The doctor didn't do any testing today - she said that she would like to get a biopsy of the rashes first. She wants to see how many mast cells are in the surrounding blood vessels (still looking at Mastocytosis - it's a lot better than a bone marrow test). She also wants the dermatologist to do the patch testing (where contact allergens, such as metals, are placed on the skin to see if there will be a reaction). Even beyond that, she wants to do RAST testing the next time she sees Isaiah (in three weeks) - RAST testing is (for Isaiah) a series of blood tests that look at the levels of IgE antibodies the body has set up against foods. She also said that some of his food allergies could be caused by pollens (his allergies to berries, pears, honeydew, bananas) - his body thinks he is ingesting the pollen and is in reality reacting to the pollen, not the food. I'm not entirely sure how that works, but I've given up on trying to understand everything. =0) She is still considering the dermatologist's suggestion of a Zinc deficiency disease, but she wants to eliminate other things first.

As far as the new meds, one is an antibiotic - some of the eczema is infected. =0( No matter how hard we tried to keep it clean, it still got infected. He has spots on his hands and on his feet that require a bit of extra help, so we have an oral antibiotic as well as a topical antibiotic (which I am also to put on the inside of his nose . . . somehow). =0)

So, now we go back to the dermatologist for testing. The dermatologist also wants Isaiah to use this stuff from Vanicream as his soap, lotion, etc. It's amazing - this company has thought of just about everything! We can get all of it through the pharmacy or online - whichever works best.

Hopefully, Isaiah won't have to be on all this medication for too much longer - my brain hurts everytime I go to the medicine cabinet. We have lists taped to the inside of the cabinet doors listing what medicine Isaiah gets at any particular time, and how much. It's weird - he takes more medicines than my dad! =0) I think the total meds a day is up to 11. I feel like I am drugging my child, and it almost seems impossible that anyone could take that much medication. It was also really weird going to CVS to get medications and having to walk out with a large brown paper bag full of just medicine. Let's see, there's Zyrtec, Zantac, Hydroxyzine, Nasonex, Singulair, Pulmicort, Albuterol, Zithromax (a temporary med), Triamcinolone, Protopic, Mupirocin (another temporary med) . . . I think that's it. =0) It's so weird to think Isaiah is on all of this stuff every day.

As far as my Dad, he had more blood tests today. He seemed to have a really good day yesterday and today (after several nights of little sleep and night sweats). He was in a really good mood today, making jokes and all sorts of stuff - he was for a while his old self. It didn't seem like he was in too much pain today either. His appointment went well - the neurologist told him to drink gatorade for muscle cramps and neuropathy. She also said that some of the nerve damage could be from a fluid medication he takes - he has been drinking a lot of water which isn't so good since he's taking a fluid tablet. Apparently, drinking too much water with a fluid medication can cause nerve damage. Of course, the leukemia he has will also cause nerve damage. So, it's really hard to tell what caused . . . what. =0) He loathes gatorade, but has been faithfully drinking it. It must be helping, considering he seemed happier yesterday and today. My mom will probably write more later, but I figured I would give you a little update.

Well, I am going to make the most of Isaiah sleeping, and go to bed. =0)

Goodnight!!! =0)

Kelly

Isaiah's Recent Appointment

Hi everyone!

Well, we went back to the dermatologist today. Isaiah has pretty much gained all the weight back- yay!!! He is still eating like a pig!!!!! =0) He still has the rashes, just not as bad as they were - the prednisone really helped. The dermatologist looked at his remaining rash and prescribed another topical ointment - protopic, I believe. He said that it has fewer side effects (steroids have more side effects), and that it should help to keep the rash under conrol. He said that he thinks it might be good to do patch testing (to see if he is coming into contact with a metal or something) to see what he might be allergic to. He also said it's possible that yet another food is bothering Isaiah, and that it's possible he could have some kind of disease that doesn't allow his body to absorb zinc (apparently zinc deficiencies can lead to rashes and eczema issues . . . .). He also said that the rash on his the rest of his body isn't from cutaneous mastocytosis (mastocytosis of the skin) - yay!!

We have an appointment with another allergist on Tuesday morning. They WILL be doing testing - he is to be off all his medications for at least 48 hours before the appointment. Needless to say, I am a bit worried about the 48 hours without his medicines - especially the antihistamines. Please be praying that Isaiah doesn't anaphylax (like he has done before off the antihistamines) or have any problems without the medications. I'm nervous for him! I don't think he'll mind not taking his medicine for a few days, though. =0) He's just starting to notice that they don't taste too good, even with the flavorings. =0)

I will keep you posted on everything going on - thanks for your prayers!!!

Love,

Kelly

The latest on us . . . =0)

Well, Isaiah just completed the last dose of his prednisone (he went from 15mL to 5mL). It's a good thing, yet not so good as the rash started to return on the next to last day of the 10mL doses (about a week ago). He has started to wear his shoes again (he was wearing bedroom slippers), and has been eating well (a lot in fact). He has also gained some weight - it's so good to see those chubby cheeks again. =0) I think he is up to 37 pounds, so he has gained about 7 pounds - 3 more to go!!! Woo-hoo!!! It was weird to see his pull-ups fall off of him when they were wet, not to mention his bones.

He did have a rough night last night - he woke up at 5:30 this morning itching. I am just praying that tonight won't be like last night.

I am so thankful that God is healing him, and it's awesome to see God working in Isaiah (and through him). He's such a sweet boy, and it's so good to see him jumping around (and running), laughing, and just being his goofy self. He has developed a weird thing, though - he has a pattern . . . he runs around the house . . . he just keeps doing it until he's tired enough to sit down! =0) He's so silly!

As far as my dad . . .
He's had good and bad days. He really wasn't himself this morning. He was grumpy, and just not talkative at all. He didn't even watch his usual morning shows (The Walton's and Little House on the Prairie). He stayed in bed for a bit (after eating breakfast), and then finally went outside for a while. He came back later and fell asleep in the chair until dinner time, and then just repeated the process. He is frustrated that his mind isn't working the way he wants it to. He's also constantly tired and in pain. Today he said that he was cold - so cold that he just couldn't get warm. He also said that his skin felt like it was on fire, and his whole body ached. My mom checked to see if he had a fever, but she said he was cold to the touch. His lips have been blue the past few days as well. Please pray that these symptoms would go away - that he would be able to think clearly, be out of pain, stay warm, and that he would be back to his old self again. He really misses doing all the things he used to do - working on lawn mowers, taking care of his lawn, building things, tinkering with clocks. He gets so frustrated. I am also praying that he finds peace and joy, and the comfort that only God can give. There have been a lot of things in the past year or two that haven't been all that encouraging, and we have all been through a lot of stress (he has also been fighting disease for quite some time). I also pray that he is able to see the blessings amongst all that has happened, and that he just doesn't give up hope . . . hope in life, hope in many more good days, hope in God.

My mom seems to be handling all of this well. I know she doesn't always show how she's feeling, but I know it must be hard on her as well. I think that so much is going on that it's hard to be focused on just one "problem". When did life become so complicated? =0) Please pray for her too - I know she is under a lot of stress her self. I have to say that there are times where it's just hard not to scream - you know, just run outside and scream at the sky just to let out the pressure. Not really a scream of anger, but of relief - it just seems like it would make you feel better. Sadly, I don't think the neighbors would appreciate it very much. =0)

God remains faithful - He has helped us, already, in so many ways . . .I'm not even sure where or how to start. I can definitely say, though, that without Him there is no way that we could have gotten to where we are now. So much has been learned, and there's still more to learn! I have started signing all my e-mails with the following Scriptures (and a quote from a well-known guy) just because it's what I am learning right now:

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 super abundantly, 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.

"Never, Never, Never, give up!" (Winston Churchill) =0)

Never be afraid to ask God for anything. How can he give it to you if you don't ask? I used to think (and sometimes I still do) that I was just being a burden by asking God a list of things. It always seemed easier to pray for someone else (and right) than it was to pray for myself. Not that I was thinking God wouldn't listen to me, but I just always thought that you should never ask too much of anyone - I didn't want to be annoying or seemingly ungrateful for what God has given me. All of this has taught me that I don't have to worry about God getting annoyed with me for asking, after all, He wants me to ask. Those nights where I have gotten no sleep, crying out to God was really no problem at all, and I can see the importance of keeping it up even when things get calm. I need a higher expectation and trust for God - for all He can do and for all He is. I need a deeper confidence in Him, and a deeper relationship - to the extent that it's hard to tell where I end and where God begins. Scripture means so much more to me now.

Well, that's my novel for tonight . . . =0) Thanks, Terry for making my mind work over-time! =0) Just kidding!

Love,
Kelly