Hello!

Hi everyone! I just wanted to give you a quick update on Isaiah. He is doing well, apart from an itchy goose-bump type rash that is all over his body. He's still having pain at night, and we are trying so hard to keep him in out of the heat - he loves to play outside with "the boys" (my nephews are collectively known as "the boys"). =0) About the only time he can go outside is in the late afternoon, when it cools down a bit. Even then, he has to be careful - he flushes so easily, and then he's in for a rough night.

I have to admit, last week and a part of this week were difficult for me. I am beginning to realize what this masto thing really means for Isaiah, my active, sports-loving little boy. From observation, I don't know if Isaiah will be able to participate in the sports he loves so much (unless God heals him - which I am all for and eagerly awaiting). His baseball, soccer, football, and gymnastics seem to tire him so easily (not to mention cause him pain, make him flush, make him break out in rashes . . . ). Swimming seems safe, so far . . . but he does have a fear of the water. =0) Who knows, maybe we have a Michael Phelps in the making? =0) Isaiah has been practicing in the bath tub! =0)

This was also complicated more by the fact that the doctor and nurses in the ER were so blah about Isaiah's reaction (they dragged their feet, and the doctor just didn't seem to think that my child not breathing well was "okay"). Don't get me wrong, they eventually did something for Isaiah, but I was definitely reminding them that my son needed help. It's true that I took him in before the reaction really started, but from the last experience, I thought that would be a good thing. I guess next time, I will wait for the ambulance to come through the windy streets of the neighborhood to pick up my son after he receives an Epi so that we can have hurried nurses and a more concerned doctor. I am beginning to see that "what do you really expect me to do, a miracle?" look a lot with Isaiah - I don't like it.

The previous just added to the rest of my frustration this week. I started seriously researching schools (public, public year-round, private, private year-round, and homeschooling), and it's just emotionally tiring and irritating. I was told by the public school (the one Isaiah would go to because of location) that he wouldn't be able to go there, but he had to go to another school . . . one that doesn't have the greatest reputation for FCAT scores (the huge state-wide assessment). The problem with that is that the FCAT says whether or not a student can advance to the next grade. I can't say that I 100% agree with that considering there are a lot of factors in a student's academic success.

I have an appointment with a private school, but this particular school doesn't have a full-time nurse on staff . . . not that it matters that much - in an emergency, the teachers are the ones who will need to be prepared and educated to administer Isaiah's Epis. It's just that I'm starting to think that it's the whole daycare situation all over again. Nobody wants the responsibility of taking care of a child who can anaphylax for no reason - as I have heard from the daycares, he's too much of an insurance risk. Back to the private school thing, I was thinking that this particular private school has several advantages (along with the perk that they do not administer the FCAT). It also sounds like Isaiah can get a full scholarship to attend.

The good thing is that Isaiah has laws on his side - he cannot be refused an education. But does that mean he has to settle for less? I am not willing to let that happen - my son will get the best educational opportunities, the ones available to every other child out there. If that means that I have to supplement with my own "school" at home, that is exactly what I'm going to do - by whatever means possible. It was always my hope to home school Isaiah for the first year or so, but I can definitely say that I will do my best to get Isaiah in somewhere - even if it means that I home school him until a school is forced to take him. =0)

Why am I even thinking about this when Isaiah is 3? Well, it's the whole IEP thing. Isaiah is already showing some signs of mild developmental issues (mostly the mild speech issues, but there are a few other things), and he obviously has the health stuff . . . unless God heals him before he starts school, Isaiah will need an IEP. From what I've heard, we need to prepare now so that the school will be ready for him. Staff will need to be trained and informed on this thing called systemic mastocytosis and what that means for my child. I've been called over protective and even paranoid . . . but one thing I will be is proactive in giving my child every opportunity available to other children - and I will not isolate my child in a bubble (which has been suggested to me - and I find that offensive in so many ways . . . ).

Maybe I'm just grumpy and venting, but I figured I would share a smidge of what's going on in my life (and Isaiah's life - it is about him, after all) with you. So, if I have sounded a little down the past week and a half, this post should explain it all . . . well, at least most of it. =0) My faith in my awesome, wonderful God has not wavered a bit. I know that He can take care of all of this - I'm just still learning how to put it all in His hands. I know that He has the ability to heal Isaiah and I am totally thankful for the healings I have already seen take place (like Isaiah's vocabulary and ability to speak as well as he is). I know God can do more, and I have no doubt that He will. I am also grateful that God allows us to vent and He knows and understands the frustration we feel - I am glad it's a partnership and not an individual (read as lonely) struggle, He's always right beside us.

Anyway, I think this is supposed to be a wordless Wednesday . . . =0) Here are some photos from this past week:

Blessings!

Kelly

Here's What's Going On . . .

Okay, so today I found out (by a postcard I got in the mail) that Isaiah's appointment with All Children's was changed to October! I have mixed emotions about this, seeing as the allergist is just as overwhelmed as Isaiah's PCPs are. This isn't some normal occurrence disease for regular doctors, and most of them don't know too much about the disease. It looks like the pediatricians have finally discussed Isaiah and the whole masto thing, so when we see them they know the scoop on Isaiah. The allergist treats a patient who has masto, but she doesn't treat the masto (and the patient is an adult with mast cell leukemia - a totally different scenario). She does know a little about the disease, but like I said, it's so confusing because so little is known about it.

I informed the poor scheduling nurse at AC of all that was going on with Isaiah and she said she would talk to the doctor, but the best they could do is put us on a waiting list for a cancellation . . . the place is at least 3 hours or so away, so it would have to be a cancellation at least a day in advance so that we could actually have time to get there. I'm not angry with the doctor, she has every right to take a couple of weeks off, and it seems like the other doctor we are getting is a qualified physician, it's just that the appointment is October 10th!!! I was already preparing for (and looking forward to) the appointment on September 4th (which was scheduled over 2 months ago). Grrr. =0) Oh well, I guess we can wait another month.

The bright side is that Isaiah's system will be clear from all the steroids he was given in the ER. This will allow for more accurate test results - which will give us clearer answers (when we went to Johns Hopkins, Isaiah had been on steroids for a reaction). Of course, I really have no idea what AC will want to do with Isaiah, which is part of the frustration of not going in 2 weeks. I guess we still waited longer for an appointment at Johns Hopkins, so I guess we can wait for this one. . . . =0)

I know, it seems trivial to gripe about. I guess I was still thinking that they would tell me (in 2 weeks) that there is one medication that will work in place of the 10 Isaiah is on, and that Isaiah's masto would be better controlled by it. I know, wishful thinking, but one can still hope, right? =0)

Isaiah is doing better - he's still a little pale though (and oddly enough it really shows through his lips). He's also still grumpy, but that could also be coming from the weather (yes, Fay is still here, but it finally is going away). He's lounging a bit more today (he was more active yesterday), but his appetite seems to be better.

I actually have a funny story about his appetite and cooking . . . Yesterday we lost our electricity. Not really because of Fay (though, all of the houses across the street from us are without power because of Fay), but because FPL wanted to trim some trees, so they turned off our power to do so . . . in the middle of Fay! Okay, so more toward the end. =0) Anyway, since we had no electricity (and cooking for Isaiah is tough enough as it is), I had to cook Isaiah's special hot dogs by candle light - literally! It was actually a lot of fun! I wrapped the hot dog in tin foil and moved it length-wise across the candle's flame, making sure I rotated it a few times - gotta make sure it's cooked on both sides! =0) It took forever for the thing to be thoroughly warmed, but Isaiah seemed to like it). By the way, the candle was fragrance-free and not made with soy. =0) To make the situation a little more funny, Isaiah wanted seconds! =0)

We did get a chance to go out yesterday to take a look around. Here are some of the pictures of what we saw:

It's really not as bad as it could have been, and we haven't had the flooding that places just south of us have had. Still, it was a lot of rain - I think we got about 20 inches, though I'm not sure.

I will post some more pictures of Mr. Curls (aka, Hurricane Isaiah) a little later. =0)

As Promised, A Scripture =0)

Okay, so this is still one that came to my inbox, but it was just so good I had to share it! =0)

“By day the LORD directs his love, at night his song is with me— a prayer to the God of my life.”

Psalm 42:8

Okay, this is really my last post . . .

Really. =0)

So, as I was checking my e-mail, I came across this feed that I hadn't read yet . . .

Bible Gateway's verse of the Day:

“I have set the LORD always before me. Because he is at my right hand, I will not be shaken.”

Psalm 16.8

How perfect is that????

( . . . and I think I'm going to start posting my own verse of the day seeing as the app. I have on my site only gives portions of verses . . . ) =0}

Goodnight . . . really, goodnight!

=0)

Fay Recipe =0)

Well, since Fay was well on its way, and store shelves were scarcely stocked (with Isaiah-friendly food anyway), I decided to throw a few things together in case the electricity went out. Here's what I came up with . . .

No-Nutty Chocolate Chip Oatmeal Cookies =0)

These cookies are free of tree nuts, peanuts, milk, wheat, eggs, and soy.

1/4 cup palm oil shortening

3/4 cup plain apple sauce

1/2 cup maple syrup (the real stuff)

1/2 cup honey

1/2 cup unbleached organic sugar

3 tsp Ener-G egg replacer mixed with 4 tbsp of warm water (the equivalent of 2 eggs)

1 tsp vanilla

2 cups corn flour

1 tsp baking soda

1 tsp cinnamon (or 2, whatever you like best)

3 cups of oatmeal (I used the old fashioned organic oats)

1 heaping handful of sunflower seeds (raw organic)

1 heaping handful pumpkin seeds (raw organic)

1/2 cup to 1 cup of Enjoy Life (milk-free, soy-free, nut-free . . .) chocolate chips

1. Preheat the oven to 350 degrees (F)

2. Beat together shortening, apple sauce, syrup, honey, and sugar until well blended.

3. Mix the egg replacer. Add egg replacer to the sugar mixture along with the vanilla; mix well.

4. Combine corn flour, baking soda, and cinnamon. Add to the sugar mixture and mix well.

5. Stir in oats, seeds, and chocolate chips. Mix well.

6. Put in the refrigerator for 30 to 1 hour. (This is a great time to preheat the oven)

7. Drop by rounded teaspoonfuls onto ungreased cookie sheet.

8. Bake 10 to 12 minutes or until a nice golden-brown color. They should be more of a bronze color, though. =0)
9. Make sure they are thoroughly cool before removing from the cookie sheet (gluten-free baked goods will fall apart unless they are thoroughly cooled).

Makes approximately 4 dozen.

You can also make bar cookies with these . . .

Bake 30 to 35 minutes in an ungreased 13 x 9-inch metal baking pan. Cool thoroughly before cutting.

Here are a picture of Isaiah's cookies (he says they're yummy!!) =0)

They taste really good with a glass of rice "milk" =0)

Enjoy! =0)

As far as Fay goes . . .

So far so good. Obviously, at the time I was writing this post, we still have electricity. =0) It is pretty windy outside and we have had a lot of rain. The lights have flickered a few times and we almost lost our electricity . . . but it came right back on. In fact, we have even kept our Direct TV connection (we usually lose it in the heavy rain . . . but not today). The rain started this morning, but wasn't continuous (and it wasn't really all that windy either). It was also overcast most of the day.

At about 2 or 3, however, it started getting quite a bit darker and windy. Fay's outer bands started hitting us about then (which is about the same time we lost our electricity for about 1 second). Here are a few pictures of our day . . .

Isaiah was resting most of the day =0)

I guess his hand was tasty =0)

Pictures from inside the house . . . the door got a little foggy.

My attempt at getting a picture of rain drops in the puddle =0)

Another reaction . . .

Well, Isaiah had another reaction last night. I have no idea what caused it, apart from the speculation of a spot on his side - his pediatrician said that it could be UP (urticaria pigmentosa), but it's a little dark, but it's still possible. Last night, before the reaction, I was looking at the spot and accidentally scratched it. I didn't think too much about it, because I didn't know what the spot was. I was trying to get him ready for bed when I started notice that Isaiah was acting a little funny - he got really clingy and fussy, and then started gagging. He was also speaking funny.



A few minutes later (as I was trying to keep him awake to figure out what was going on), he vomited and I noticed swelling lips. Needless to say, I grabbed him and we went straight to the ER. We were taken straight back, and as soon as we started to "settle in the room", Isaiah's reaction got worse. He was covered with tiny hives (along with tiny purple spots), flushed (everywhere), breathing funny, and vomiting even more. On top of that, he was in a lot of pain - a lot. So much so that he was holding on tightly to me while trying to climb. I can recall one event in particular where I was in so much pain that I wanted to run, but couldn't move either. He was having an anaphylactic reaction.


The doctors gave him an IV with a bunch of meds, and observed him for a while. After several hours, the doctor sent us home - Isaiah would be much more comfortable there, and we also have that storm/hurricane coming so they wanted us to be at home and see the PCP this morning. The spot was pointed out last night, but nothing was really said about it until this morning when Isaiah went to see the pediatrician for a follow-up. That's when I pointed it out to the doctor, and she suggested that it might be UP - but she didn't want to touch it because of Isaiah's reaction last night.


So, that's where we are. We will have to wait until the 4th (for All Children's) to know more about what's going on.

I have no doubt that God was in control last night - things could have been worse. I also have no doubt that satan was using this to cast doubt on what God has called us to do. I have no trouble telling you that I am not swayed by this, but I am more determined than ever to continue fighting this good fight. I know the One who has the victory, and regardless of what may happen along the way, God is in control and I will lift my hands to praise Him. Thank you for your prayers and words of encouragement. Please continue to keep Isaiah in your prayers.

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

Just a little Update

Please keep Isaiah in your prayers. He seems to be in a little pain the past few days. Apart from being clingy and irritable, you would never even notice - he still jumps around and runs around (man, this child is resilient)! He is also having trouble sleeping at night, and when he does sleep he is restless and jumpy.

He does have a little rash and his appetite isn't the greatest. He does still drink his chocolate milk, though (chocolate rice milk that is). =0) I wish that he would try the neocate, but he hasn't ever really liked the taste of it (and I must say that the smell isn't that great either). I think I would be a little more relaxed about him not eating if I knew he were getting the nutrients from the formula (which, by the way, is the only formula he is supposed to be able to tolerate).

As far as Fay . . . it looks like Fay might be coming to Florida. The hurricane or storm (or whatever it may be) should be affecting us late Tuesday or Wednesday. I will keep you posted (as best I can) - I'm really busy this week and, when Isaiah is awake, Isaiah won't let me touch the computer! =0)

Currently, though, the only hurricane that has hit our household is Isaiah! =0) Hahahaha, just kidding. Isaiah sure can make some messes, though. I will post some pictures on that a little later. =0)

Now, for some sleep! =0)

Blessings,
Kelly

Our Camping Adventure =0)

We had Isaiah's first camping adventure . . . in the living room. =0) It was so much fun! It all started when Isaiah got into the closet and found his shopping cart insert . . . and called it a sleeping bag. =0) So, I spread it out on the floor and Isaiah layed down and pretended to sleep. He was so cute! At bedtime, he wanted to sleep on his "sleeping bag". Not wanting to argue, since he actually wanted to go to sleep, I sat down next to him and sang him the usualy lullabies. Within a few minutes he was fast asleep . . . but not on the normal sleeping bags.

I thought about picking him up and taking him to bed, but I thought, "why not just go camping in the living room?" That's when I got out the other sleeping bags and a blanket, which slightly woke up Isaiah so that he sat up . . . asleep. After that, he fell over and . . . well . . . here are the pictures. =0)

On the lighter side of things =0)

I had the best afternoon and evening with Isaiah. He has such an imagination!!! Well, since our cable is messed up (who knows what in the world is happening with that), we have been watching movies . . . lots and lots of movies. Don't get me wrong, we still have time without TV. Anyway . . . Isaiah wanted to watch a movie with Santa Claus, and he ended up picking a movie . . . well . . . without Santa. =0) He picked one of my Dad's all-time favorite movies, Snowball Express! Funny thing is, he watched the WHOLE thing! =0) (As far as the pic . . . sipping apple sauce through a straw is sooooo much fun! . . . . so is blowing bubbles in said apple sauce) =0)

He decided that his scooter was the snowmobile (the folded up scooter, that is). He sat down on the thing and kept trying to scoot across the floor . . . yeh, my long-legged little man was trying to scoot across the floor on something that was about 3 or 4 inches in height! It was a sight to see. To make it even funnier, I tried to help him out by opening the scooter, so that he could at least roll it across the floor. Of course, he didn't like that idea and gave me a look of "um, yeh right mom" and said "Oh, Mommy! How could you?" I couldn't help it - I just busted out laughing! To which he replied, "Mommy, it's not funny!!!" I wasn't only laughing because of what he said (which is definitely funny), but also out of joy - my son is speaking, clearly! =0) Praise God!!!! Finally!!! =0)

He eventually decided that I was to sit on this make-believe snowmobile . . . so, as any loving mommy would do, I got down on my knees and pretended to sit on the folded-up scooter (which was unacceptable at first). =0) I am soooo glad no one else was there! =0) It was so much fun, though. A few times, I decided to "fall off", and Isaiah would come over and say "Okay, Mommy, enough. Sit down!" Sound like mommy language??? Gee, I wonder who he's imitating??? =0} He would then yank on my head and try to pick me up!!! He's so funny. He eventually got Nai Nai (my mom) in on the act - that was funny! =0)

It was just so nice to be able to sit with my little man and watch this movie (and then, of course, act it out . . . as he usually does). It was so nice to step back from the hectic schedule of the day and just exist, just spend quality time with my beautiful little boy in interactive play. Yeh, we read books together, do arts and crafts, bake things, etc. But there was no agenda, no "teaching" anything in particular. It wasn't a chore (not that it ever really is). It was just so refreshing (kind of like rocking him while he falls asleep, and then watching him sleep).



Ah, I just love being a mommy!!! =0)

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