A little update on my Dad . . . =0)

Of course, I didn't want to forget an update on my Dad . . .

Please keep him in your prayers as well. He has been shaking a lot, but last night was worse than it has been. He was just sitting at the table trying to eat his sandwich. He closed his eyes, and had both hands clentching the sandwich - he was shaking so badly, I thought he was having a seizure. It almost looked like he was going to drop his sandwich. It wasn't just his hands either, it was both of his arms, shoulders, and chest. It was the weirdest thing - his shirt was even jumping.

He has also been in a lot of pain as well - his nerves are really irritated (he has nerve damage from the kidney failure). I'm not sure if I mentioned that in any of the blogs, but my Dad is in the beginning stages of kidney failure because of the medications he takes (a combination of the pain medications and his fluid pill . . . he was drinking too much water while taking the fluid pill). At first, the pain seemed to be tolerable as long as he drank gatorade, but even that hasn't helped too much the past week or so. Another strange thing is that he is fine one minute, and the next he's not doing so good.

He's having a rough time dealing with all of this - he's an active guy and hates not being able to do things. I know he trusts God, but I think he just wants to know why all of this is happening. Please, continue to pray for him.

Spots!!!

I know that one of the phrases of pediatric mastocytosis is "spots happen," but boy do I hate those spots (I love my child, and hate the spots)! Those spots bring discomfort to my baby: itching, pain . . . I wish there was a way to keep them from happening to him.

If you haven't guessed yet, Isaiah had some issues with spots and rashes again. His legs, feet, and arms look like . . . I'm not even sure of what they look like, but it's horrible! It's not as bad as it was in March, but it's still not the way Isaiah's skin is supposed to be. To give you an idea of the rash in May . . . (I was thinking I wouldn't post these, but it's just to give you an idea):

By the way, some of these are a little gross . . . . =0}

The rash that is on his back in the photo above was all over - on his scalp, on his face, in his ears, up his nose, on his arms and legs, on his tummy . . . you get the idea.

Sadly, these were taken after treatment began (after the blisters had drained and began to heal - these were taken when he was on prednisone and the antibiotic). The rashes don't show up quite as well in the pictures - it was much brighter (at times), and sometimes it looked like his face was dirty. Just looking at those pictures made me cry - some of the pictures looked stretched-out, though I know it was because he lost so much weight. It was scary looking at those - he was way, way, way too skinny.

Compared with now:

(The one of his face was taken after the benadryl . . . his eyes were red and swollen as well).

Obviously, the rash is not as bad. He has the red bumpy rash on his cheeks, with a few spots here and there, but nothing in comparison to the last time. This time, the rash started with the red spots (not quite hives, but close) and were replaced with a bunch of tiny red, itchy bumps. It's frustrating because he's still on the medication to clear up the rash from May! (He still had remnants on his feet, legs, and hands). We've switched soaps, lotions, and hair products (we now use vanicream); I have made sure all of my makeup is free from anything that we know causes a reaction; I make our laundry soap (with bars of the vanicream stuff, and I still rinse twice); we've taken a few extras out of Isaiah's diet (no more avocados, grapefruit, garlic) . . . there's not much left to change! Grrr. =0)

Yeh, I'm a little frustrated and tired - I wish there was something more that I could do for him. You know, until God heals him. Isaiah has not slept well for the past 2 or 3 nights. =0) Last night was pretty bad - he was fussy (not really crying loudly, just whimpering in his sleep), and very jumpy. It was just a rough night. Of course his not eating isn't going to help with his tummy - I'm sure it has to bother him at least a little.

Please, keep him in your prayers. We have a long way to go before our September appointment (trust me, even a month is a long time to wait). =0) Okay, so a month isn't that bad. It just seems like an eternity considering we need some info. to take care of Isaiah now. I'm not sure what help, if any, they will be able to offer - I guess I am looking for them to say "Oh, yeh. This will take care of it all." Of course, I know that they are only human doctors, and that God is capable of much, much more than they can ever accomplish. With that said, just keep Isaiah in your prayers. =0)

Well, since I have had little sleep, I need to go to bed. =0)

God Bless,

Kelly

Life . . . =0)

Okay, so it has been a while since my last post . . . sorry. =0}

Anyway, I decided that it was about time to post at least a little something. =0)

My Dad:

My Dad hasn't been feeling the greatest lately. He has been dizzy and just in a lot of pain. He tires easily, and sleeps a lot! When he is asleep, he jumps like crazy. When he falls asleep in his chair, it looks like he is going to jump out of it! He's just not himself - he's not talkative anymore. It could be that he has just run out of things to talk about (which is why it's a good thing he's going to Maryland and West Virginia next weekend), or it could be that he just doesn't feel like talking. Either way, it's just not my dad. He stays mostly to himself, and if he is in his "usual" spot (the green chair in the living room), he just sleeps. Please keep him in your prayers.

Isaiah:

Isaiah turned 3 (on June 25th)!!!! I can't believe my baby is 3! He's no longer a toddler, but a preschooler!!! It's crazy how time flies!

Isaiah has been doing really good. He had an allergist appointment about 2 weeks ago (I know, I know . . . I should have posted sooner) =0) and his allergist is pleased with how good he is doing. His appetite was great at the time, and his asthma is under control - he's on a new med . . . Advair twice a day. It seems to be working quite well (even in the midst of the controlled burn behind our house 2 weeks ago that left us in a hotel 2 nights), and doesn't make him jittery or anything. The Advair contains two medications in one - a stronger medication to prevent asthma attacks (a little like the Pulmicort) and another that is a long-lasting albuterol (which treats an asthma attack). It's still very overwhelming that he is on all of these meds (still 10 a day), but I know that God is in control and that He will take care of us and our needs.

As far as the rashes . . . they come and go. The allergist said that they are "normal" for him and should be expected. As much as I hate that Isaiah's "normal" is rashy, I can at least be thankful that the rashes aren't the huge blisters and cracks. It's weird to continuously treat these rashes with the topical steriods for 2 weeks, then to switch them to the Protopic for 2 weeks (so that his body doesn't get used to the medications and so that the side effects are lessened). The house is always cold - sweating makes it all worse - and Isaiah stays inside apart from our trips to K-Mart, Wal-Mart, or Target. =0) Oh yeh, there was also the quick walk by the river (the Indian River) when we had to stay at one of the hotels . . . we saw a mommy and baby manatee (which Isaiah named Mrs. Barbara Manatee and Baby Barbara Manatee - thank you, Larry the cucumber)! It was amazing. They swam right up to us as if to say hello - and they were probably thinking, "Wow! There's a mommy human and baby human!" =0)

We did have a little scare this past week. Isaiah lost his appetite, and started having some digestional problems (sorry for those of you with weak stomachs, but . . . diarrhea). He also got more of a rash on his cheeks . . . I have no idea what happened, but his appetite returned at dinner time - 3 chicken legs; 3 ears of corn; some broccoli, cauliflower, and carrots . . . and a cookie!!! =0) He's a little piggy! =0) Which reminds me of his new favorite phrase . . . "a chinny, chin, chin!" If you haven't guessed it, it's from the story of the Three Little Pigs. Isaiah decided that I was to be the wolf, and he was the little pigs. When he comes up to me and starts saying "Little pig, Mommy," I'm supposed to reply, "Little pig, little pig, let me come in!" You get the point. =0) He laughs so hard when I blow on him!! He has such a wonderful imagination! He also has the most contagious laugh!!! I'm so glad he has found it again! =0)

I also enjoy hearing him speak and sing more. I'm not sure if I had posted this, but I was a little worried about his speech development. He wasn't speaking much beyond jibberish before we went to Lakeland. Since our first visit, Isaiah has been speaking almost non-stop! His speech is much clearer, and he even understands more!! He even sings along with the radio!!!! One of his favorite radio songs is "My Savior lives! My Savior loves! My Savior's always there for me! My God He is! My God, He was! My God is always going to be!" Of course some of the words don't come out all that clearly . . . it's more of " . . . My Savior always for me! My God is! My God was! My God alway gunna beeeeeee!" =0) It's awesome! The first time I heard him sing that, I got all teary-eyed! =0) I was worried, but God proved that He's in control. Not that I doubted that He knew what He was doing, but He definately proved that as well!

God is always faithful, and He knows what we need when we need it. I couldn't imagine life without Him. He is truly amazing!

God's blessings upon you and your family,

Kelly & Isaiah =0)

Saying Hello!

Hi guys!

Sorry it has been so long since I last posted . . . I've been super busy. =0)

Just a little update . . .

Isaiah is 3!!! He just turned 3 yesterday (Wednesday, June 25th . . . at 6:23 pm). =0) Time goes by sooooooo fast! He had his birthday party today - it went really well . . . it was perfect! =0) He has been so excited about his birthday . . . last night when I was making his cake, all he talked about was his "happy birthday cake." Even today, when I brought in the balloons, he started dancing around singing "I love balloons!" (the song Annie sings in one of the movies from the Little Einsteins). =0) I can't wait until he wakes up tomorrow . . . I'm sure the excitement of his birthday will not have worn off one bit! =0)

Isaiah is doing well on his new medication. He finished the antibiotic with no issues - a VERY good thing - and seems to be doing well on the new asthma medication. The only problem with it is that he has to inhale it within a few seconds. He's starting to get tired of taking it (the newness and excitement in hearing the little whizzing tone has worn off), so now he fights me. =0( It's okay, though. It takes a little convincing, and sometimes I have to take out the nebulizer to convince him, but he eventually gives in and takes the medication. I feel like we waist too much of it though - he will sometimes act like he's going to take the medication, and then turn away . . . =0}

His rash seems to come and go right now. Mostly, it has improved. His feet are still crusty (as well as portions of his hands), but he only has a few spots of rash on his back, legs, tummy, and face. His hives have completely disappeared (the last time we went to the allergist, Isaiah had hives on his torso, and a few on his legs last week). Part of all of this could be because of one of his medications has been increased (the zantac, which is some kind of antihistamine) - based on an idea from the support group, and the further recommendation from Isaiah's allergist. The zantac actually helps control rashes (especially since Isaiah has issues with systemic reactions). Of course, I should also mention that God has played a HUGE role in all of this - His hand is on Isaiah's life, and I know that He is healing Isaiah.

Isaiah continues to amaze me with the things he's saying about God. He has said that God is talking to him, and runs to the TV to make sure we watch the revival - he says that we have to "see Jesus on TV." Please, know that Isaiah does not think that Todd Bentley or any of the other ministers on TV are Jesus - trust me, he knows the difference. He knows that Jesus is in the service. He even talks about Jesus at various times during the day. I think it's awesome that Isaiah can see Jesus - whether he sees Jesus or even just senses His presence. Either way - it's awesome! I also love how he talks to Jesus and worships - amazing!!!

Well, that's all for now! =0) Good night!

Kelly

Allergist Appointment

(the picture is of Isaiah making sounds like a lion - he's so goofy!) =0)

We had an appointment with the allergist today - she offered some help! She decided to try a different medication with Isaiah, to see if it would help control his asthma (I think it's advair). It's an inhaler (not a neb. treatment), so it may not work with him just yet (he doesn't exactly know that he has to inhale with his mouth on the contraption). . . and really, it's a contraption . . . there's like this mouthpiece on a bag, and you put the canister on the mouthpiece . . . yeh. =0) Until then, we continue to wean him off the albuterol treatments. It also looks like we are off to St. Petersburg to All Children's Hospital - they have a program for Isaiah (and I hope we have a better experience there than we did at Johns Hopkins). =0) It's about 5 hours from here, so it will be an overnight stay. The good thing is that they have a Ronald McDonald house for us to stay in for the appointment (which is in September). As far as the date, it's still better than we had with Johns Hopkins - we made the appointment in January or February and couldn't get in until September (or October). Since it's June, September isn't too bad I guess. At least this time I am not worried about what I should feed my child until then! =0)

Well, that's all for now!!
Kelly =0)

Update

Isaiah has been having asthma attacks, again. He has even had them in the middle of the night. When I took him to the doctor (his pediatrician), he just looked at me with a "Well, what do you expect me to do about it" type look (we didn't get to see the doctor we like). He basically told me to do what I was already doing, and just wait. I was thinking "wait?!?!?!?" The appointment was really a waist of time. It's not the first time that a doctor has just given up and done nothing. It's just frustrating that it has happened so much here recently. He's back on 11 medications a day (we had to add albuterol), and he has a treatment every 4 hours - by the 3rd hour he is beginning to cough, again. When he went to sleep tonight, his breathing almost sounded like snoring. At least we have an appointment with the allergist on Thursday - maybe she will be able to help us out a little. =0)

As far as the rash . . . he still has some patches, just not as bad as it was. However, it looks like he is starting to get the rash on his cheeks and patches on his arms and legs. It has been warmer here, and he has been sweating a lot more, so the rash is probably a reaction to that (people diagnosed with mastocytosis often react to hot and cold weather). He has also been playing on the back porch a lot (it's a "Florida room" - a screened in porch with windows, but no AC . . . we have fans, but are working on putting an AC out there). He hasn't really wanted to go outside either - I guess he's noticing that it bothers him, and makes him more itchy. It's still hard to tell when something hurts him, so it's possible he could have a tummy ache or something from the heat. He usually likes to go outside when it cools down, but then we have to watch the mosquitos.

I just want Isaiah to be healed. I know God can, I'd just like to know when. =0) At the revival, people just prayed strength over me - they prayed Isaiah would be healed, but in the same breath strength for me. I don't know, but it just seems like this isn't going to go away any time soon - no matter how much I want Isaiah to be healed. It's such an easy thing for God to do, but I am okay with whatever God wants, it's just so difficult.

On the bright side, Isaiah has been saying some new things. At the service (the first night we went), Isaiah said "Mommy, Jesus alive!" and "Mommy, Jesus here!" The second time we went, Isaiah started saying Jesus before we even parked the car. When I was getting him out of the car he started saying, "We see baby Jesus!" He has even started speaking with sentences outside of the service! Every time he sees the service on TV, he starts saying "It's Jesus! Baby Jesus!" He dances and even worships! I am totally amazed!! He's such a beautiful little boy, and so strong and brave! If anything, God is answering one prayer I have prayed over Isaiah since I knew he existed - for Isaiah to be a man after God's heart, and a servant of God (amongst other blessings). I pray that Isaiah lives up to his name - with the faith and relationship with God of Isaiah the prophet (Isaiah means "God is salvation" or "the salvation of the Lord"). As much as Isaiah speaks, it's possible he will grow up to be a preacher! =0)

Anyway, just keep him in your prayers - they are much appreciated! =0)

Love and God's blessings,

Kelly

Lakeland Revival

I am still pretty much speechless about the revival service in Lakeland. WOW! The presence of God was incredibly strong, and the service was amazing. I walked outside of the building once (to change Isaiah's pull-up) and looked up - there was a cloud hovering over the building with lightening! It reminded me of something you would read in the book of Exodus, you know when Moses was on Mt. Sinai. Just amazing. I want to go back - I didn't want to leave. People were being healed of all sorts of things. There was one man (an older man) who was weak and in a wheelchair who stood up and started walking. There was another young man who had cerebral palsy who was taking his first steps. Deaf people were being healed, including a little girl (about 4 or 5, maybe 6) who was deaf - it tugged at your heart when she began looking around (almost confused) because she could hear! Just amazing. God is so awesome!

Todd Bentley spoke a bit about God raising up women, and restoring their position in ministry. What he said spoke directly to me, confirming what God has been calling me to and the dreams I have had. I went looking for healing for my son, and received confirmation - God's too cool! =0)

Isaiah wasn't prayed for by Rev. Bentley, but he was prayed for by his interns - you could feel the power of God. There was so much warmth and just overall power - my arms were trembling and trying to find extra strength to hold on to Isaiah (who somehow fell asleep in all the beautiful noise). Isaiah had so much peace on his face that night (and he didn't itch that night either). I don't know exactly what happened with Isaiah, but I do know that he will be healed. It might not be today, or tomorrow, but it will happen.

I was also excited to see Shawn and Rachel - WITH GABE!!! =0) Their faith amazes me (and their dedication to Gabe's care is astounding). They are such wonderful parents!! Gabe was prayed for by Rev. Todd (as well as everyone else in the building). You could feel God's compassion in that place when everyone was praying for Gabe. Gabe even kicked a little, and I think I saw his eyes open just a little (probably to look at that man who was touching him). =0)

It was amazing - Gabe's color improved, and he was breathing much better when he came off the stage (I think I saw Rachel turn off Gabe's oxygen because he didn't seem to need it). Gabe might not have gotten up out of that stroller, but I know God is moving in his life and is healing him. The looks on Shawn and Rachel's faces were priceless, and just beamed with faith and hope. Just amazing - praise God! I can't wait to hear what's going on with Gabe now. =0)