Another Not Me Monday! (on Tuesday) =0)

Okay, so I really need to post these on Monday . . . but it still counts, right???? =0)


Thank you, McMamma, for this wonderful idea!!! =0)

Okay, so here it goes . . .

I did not totally allow my 3-year old to eat 5 candy canes in a row . . . I would never allow such a horrible thing!

I did not let my tornado of a son race through the living room and empty the contents of the toy box onto the living room floor . . . again. Nope, couldn't possibly allow that one!

I didn't even let him go to bed without having him pick those toys up, either. Nope, that would never happen in my house . . . never!


I totally did not bribe my son with a candy cane. I did not tell him that if he would just eat his breakfast that he could have one of those yummy, red-striped candies (Isaiah-safe ones, too) if he would just eat his "yucky" oatmeal. Nope, that's totally not me.


I also did not allow him to pour sugar (and real Maple syrup) on his oatmeal. That's just unhealthy!

I did not use older photos of Isaiah because my camera just happens to be in the room where he's sleeping . . . nah, I wouldn't do a thing like that!


I did not accidentally cut too much of his hair because he was wiggling. Nope, I would never cut Isaiah's hair - that's to be done by "professionals." Besides, I love those curls!


I did not think Isaiah was completely adorable while he was eating his special chocolate dinosaur (that was made just for him) . . . chocolate everywhere! Nope, Isaiah's a neat and tidy eater, he would never have all that chocolate on his face . . . hands . . . arms . . . legs . . . shirt . . . chair . . . table . . . =0) Nope, not my son. =0)

And of course, one for Isaiah . . .

Isaiah did not make fun of me, again, for screaming at that huge spider that I killed with a flip-flop. Nah, he's way too sweet for that! ;0)

Wordless Wednesday . . . Pajama day

(and just in case you were wondering . . . no, his face isn't dirty . . . that's a rash, but he does have chocolate dinosaur remnants on his favorite glow-in-the-dark Thomas shirt) =0)

Okay, so it was almost a wordless Wednesday =0)

EVS Came to Cocoa!!!

Friday night Isaiah and I went to Cocoa to see EVS (Evangelistic Singers from Lee University), the choir I was in while in college. They were amazing! A very talented group. It was also good to see Rodney, who is now the choir's director (he was also a member of the choir when I was in it). It was so neat to see Rodney as the director, though I think just about everybody knew that Rodney would some day direct EVS! =0)

Isaiah loved it! Even when the choir was just warming up, Isaiah was so excited. He found the church's hymnal, opened it (after searching for the perfect song), and began to direct!!! He was so cute! He kept saying, "People! Sing!" Amazing. He was so excited that he was shaking! =0)

There was also a point in the service where some of the choir members began dancing - Isaiah didn't hesitate to join in. I was just amazed at Isaiah's desire to worship. There was also a young gentleman who could no longer contain his excitement to worship and ran around the church - another thing Isaiah was more than eager to do. He started running behind the gentleman!! The most amazing part was Isaiah did not flush one bit! The amazing presence of God - just His presence - kept him from flushing! At one point, I didn't want to disturb some of the others worshipping, but I also enjoyed watching my son display his love and excitement for his Jesus. It even brought tears to my eyes - just watching him dance.

It was loud. Very loud. But it didn't bother Isaiah. His Jesus was there and nothing else mattered. Usually, Isaiah doesn't like loud noises or music. When we have gone to the theme parks, Isaiah gets very clingy and just really doesn't enjoy the day. He's usually more than glad to leave (poor guy)! =0) But, Friday night, Isaiah didn't want to leave. He really enjoyed it because he knew our Jesus was there.

I wish I had taken my camera - I didn't because of all the stuff I lugged along with us! =0) I should have known Isaiah would have been occupied. =0) I really wanted to share some pictures that run through my mind of that evening.

It was also eye-opening to me. I can't lie, it has been a rough week for us. The Friday before, the doctors at St. Pete told us just how severe Isaiah's allergies were and drew blood to make sure nothing else was going on in Isaiah's body to make his allergies so severe. They also told us of some very scary ideas (like leukemia causing the allergies, etc.) - at least they were only making sure that Isaiah does not have leukemia.

We were also informed, through the evaluation by the school district, that Isaiah needed at-home intervention for speech along with a few other things. They proposed that Isaiah should have in-home preschool and also confirmed the doctor's idea of Aspergers (though it is still not a concrete diagnosis made by a psychiatrist), and I saw my confused son being kicked by a group of 5-year-olds on the playground just because he was different.

On top of that, Isaiah has not been himself since the appointment in St. Pete. My normally smiling and happy little guy has been waking up crying at night, irritable/moody during the day, and just falling asleep at the drop of the hat. He just doesn't feel well and he's not ashamed to show it. =0} Some of his rashes improved, while others have gotten worse (namely the one around his mouth). He has been more cuddly than usual, but the temper issue has just been unreal. He is just not my happy-go-lucky little man.

Then, Friday. After a long week, God brought rain - a refreshing service that just seemed to medicate the soul. I feel refreshed, though, still pensive. Not really upset, just starting to face reality (which isn't a bad thing). I still have hope beyond hope that God is still the God of the miraculous, but I still recognize that His will is higher than mine. No matter what I want, though God desires to give us our heart's desires, His will is still of utmost importance. Honestly, what He wants is fine with me - He knows what I (and most importantly, Isaiah) can handle.

I think I am at a place where I know and trust God enough to let Him do what's best for my son - His creation that He entrusted into my care (and I am totally honored that God has chosen me for this task). There is a reason for all of this, there is a plan. Regardless of what I may want for Isaiah, God knows best. I have come to place where I can say, "I give up! I surrender!" because I know that God has Isaiah in the palms of His mighty hands. Yeh, things may not be "perfect" in my human mind, but isn't God's will and plan perfect? I want Isaiah to be healed and experience the "normal" life of other little boys his age. However, for right now, for whatever reason, God has us here. God is bringing Isaiah through all of this for a reason. I cannot deny reality, though I may want to. Denial never solved anything. Denial won't help Isaiah. That is not to say that I cannot call things that aren't as though they were, but I still can't deny the place where God has us right at this moment.

God's will above mine. He knows what we need, He knows where we are, and He knows how we will get to where He wants us to go. So, I say, "Lord, lead us - because I can't do this on my own nor in my own strength." God has blessed me with this little man. I am so thankful that God has chosen me to be Isaiah's mommy and I wouldn't give that up for anything this world has to offer.

He truly is an amazing God!

An Article of Interest

I have posted this article to try and get some responses to give back to our school district. While I understand the reasoning behind this new policy, I also understand that my child cannot possibly be responsible for his own Epi Pens. For one thing, he's a child - he's not going to want to inflict pain upon himself while he is already in pain. Besides, the Epi is designed to be used by regular people - it's not exactly rocket science. Secondly, when he needs the Epi it's more than obvious that he needs it - there's no time to wait for the school nurse, it just happens way too quickly. Another issue is the possible misuse of the Epi - is my son going to be held responsible for someone else misusing his Epi Pens and isn't there a possibility that Isaiah could also misuse the Epi (after all he is a curious little guy like most kids). There are just too many things I could list, but I will spare all of you. =0)


Here is the article . . . (you may be able to click on the image to enlarge it)

Poem for thought . . .

Another Blogger posted this on her site - I don't think she'll mind if I share it with you:

A Friend Like Me

By: Tracey Porreca

Please don't be afraid of me

I want to be your friend.

And if you get to know me

Your rigid thoughts might bend

Thoughts that I am different

From others that you know,

I really am no different

And this I'd like to show

I live and breathe and laugh and cry

I love to play and learn,

I sometimes do things differently

Which can cause some concern

You see, some say I'm special

I guess this much is true,

But if you were to ask me

I'd say you're special too

We're all a little different

No two are just the same,

It's really something wonderful

that way there is no blame

When things don't go just perfectly

And others get confused,

And say things like "poor child"

and other terms they use

It's okay if you look at me

And might not understand,

It's okay if you touch me

And even hold my hand

My life has many obstacles

Much more than you could know,

But that's not what I dwell on

I'm me, that's all, and so...

Please don't be afraid of me

I want you just to see,

How truly great and wonderful

A friend like me can be

And since I am a picture-oriented type of person . . . (I just love taking pictures) =0)

Wordless Wednesday . . . a little EARLY!!! =0)

Okay, so it's not completely wordless Wednesday, but I figured I would throw in a quick blog about some of our most recent appointments as well . . .

Isaiah:

Isaiah had another evaluation with Child Find today. I know I said it would be about 6 weeks or so before we would have the appointment, but they had a cancellation and decided to fit us in. It went well, apart from Isaiah getting frustrated with the 3rd degree by the end of it all. He completely lost it at the end, though . . . because he wanted to take home the car, tractor, and a dinosaur that belonged to the Children's Center.

Apart from the meltdown, Isaiah did well. He was having trouble speaking, but that's not too surprising since he hasn't quite been himself since we were in St. Pete (he wasn't feeling too good on Friday, and it just continued into this week). According to the scores from the evaluation, Isaiah qualifies for OT (speech therapy amongst a few others). The evaluators also mentioned that Isaiah scored high on the evaluation for Aspergers - meaning it is likely that he will be diagnosed with Aspergers should we see a psychiatrist. For me, going to a psychiatrist is one of the last things I want to do with Isaiah (not because I don't trust them, but because he is already on so many meds). So, for now, we will stick with therapy and see how things go. There are a few forms of therapy we can use which will help Isaiah (such as ABA and another that I can't think of right now).

Another thing happened to Isaiah today that really got to me. Since Isaiah had gotten upset after the evaluation, they decided to let Isaiah play on the playground (it's outside, but covered and surprisingly cool . . . if you're not running around). I also checked to make sure that the children were required to wash their hands before going out to the playground, and I was told that all of the children must wash their hands before leaving the classrooms (whether to play on the playground or anything else). So, that's a plus. Anyway, we were on the playground and there happened to be another group on the playground as well. I thought this was great - especially since I wanted Isaiah to have someone to play with. There were 2 little boys who thought Isaiah was the greatest. However, not everyone shared their enthusiasm. Isaiah copies what other children do - he is a follower, for the most part. He will copy anything that another child is doing whether it's crying or making all sorts of noises. He started following this one group of kids around, roaring like a dinosaur and mimicking their every move. Needless to say, there was one girl (obviously the leader of the little group) didn't like him too much. At about the same time, he started flushing and getting a little rashy (the normal outside thing when it's not too cool out). The combination of him annoying the girl and the flushing/rash annoyed the girl even more and so she decided to start kicking Isaiah. Before I could even get to him, she had a group of 4 other boys kicking Isaiah as well. Isaiah's expression was blank - like he was confused. He just kept saying, "Mommy, Nai-Nai, Ye-Ye" over and over like he couldn't understand what was going on. No need to worry, Mommy saved the day (amidst tears because my baby didn't know what was happening to him) and told the kids that kicking wasn't nice and that they needed to apologize. I also alerted their teacher (who had her back turned to the whole thing) who made the entire class sit down and listen to a lecture on how their hands and feet were never to touch anyone.

Isaiah never cried. He just didn't know what was going on. He didn't fight back, he just stood there. Confused. Almost blank. I checked to make sure he was okay, but he will probably have a few bruises on his legs by tomorrow. I felt so bad and so angry at the same time. I know kids are kids, but with all the education about differences . . . these kids were about 5 or so . . . I just thought things would be different. Don't these kids watch Sesame Street???? I'm sure they are nice kids, it's just hard to see your child be picked on for something they cannot help.

My Dad:

My dad had another appointment today. He was told his heart was still fine, but that he needed to take it easy for at least 4 more weeks. He is still susceptible to the pericarditis right now (especially if he has any increased inflammation from doing too much too soon). Sadly, this means that my dad will not be coming to Maryland this week (which also means no West Virginia for him). He is feeling better, it's just that he's not supposed to do anything until his heart and body have had a chance to fully recover.

Of course, he's also not one to mention this to anybody . . . he'd rather blame it on his back. =0) He hates not being able to do anything. This, combined with the symptoms caused by the leukemia, makes it even worse on my dad. He is already unable to do much of the stuff he used to enjoy, but now he can't do even the things he could still do (and actually wanted to do). If anyone has an idea for a hobby that doesn't require fine motor skills (he's shaky with small stuff and he has arthritis in his hands) and physical labor, we'd appreciate the info. He needs something to do.

Now, for the Wordless Wednesday (aren't you glad?????) =0)

"Gorgeous!" (thanks, Max & Ruby) =0)

Enjoying sugar from the sugar bowl . . . Goober! =0)

Always smiling! I love that smile!!!! =0)

All Children's Appointment

Well, I'm not really sure what to say about the appointment today. It seems like we hear pretty much the same thing over and over again, but now with a few twists in information. I am okay, not really sad, not overjoyed, just really overwhelmed with all of the new information.

I have to say that the appointment went well. The doctors, yes doctors, were very helpful and thorough - a much better experience than we had with Johns Hopkins. Isaiah was checked by 2 doctors as well as a fellow (or at least I think she was a fellow). At first, one doctor came in to get all of the information from me, and examined Isaiah. Then, Dr. Tang (one of 2 head specialists) came in along with the "fellow". They reviewed Isaiah's pictures (I took photos of a few of Isaiah's reactions, along with the ones from February/March), reviewed the files I took (including the biopsy and other labs), then sat down to have a chat.

We were told that Isaiah's IgE levels for environmental allergies (we'll get to the food part here in a bit) were extremely high. So high that they were 20 times that of a normal person with "normal" allergies - they were 700. His IgE levels for foods (according to the RAST testing that was done over 2 years ago) were rather high as well (again, many were off the charts). The environmental count was something that was not discussed with me before, because they were so concerned with the foods. So, I was astonished to hear that.

Dr. Tang told me that he wanted to repeat some tests before we move on with further testing (such as a bone marrow biopsy, etc.). He wants to make sure that they aren't missing anything before they do the biopsy. Again, the cutaneous form of mastocytosis was ruled out - the mast cells just aren't present in Isaiah's skin (apart from the TMEP episode in Feb./March). Some of the tests were for the usual - another RAST to check his IgE levels and another tryptase (which can tell us if he has too many mast cells present in his blood - not a definite answer for masto, but it can help if the tryptase is elevated). The last time Isaiah had a tryptase test, his level was high, so it's possible that it will be high again.

Dr. Tang also did a few other blood tests - he wants to make sure Isaiah's white blood count is within a normal range. This part scared me a little. Isaiah has been complaining so much of pain recently and his rashes are coming back (he has a rash around his mouth along with rashes popping up just about everywhere). Dr. Tang said that even though it's rare for children to have the associated leukemia (called mast cell leukemia) with systemic mastocytosis, he just wants to make sure. He also wants to make sure that all of this is not from some other kind of cancer/leukemia. He said that with systemic mastocytosis, there will be an increased risk of getting the associated mast cell leukemia as Isaiah gets older (usually in adulthood).

It's so scary to think that something could be hurting my baby that I can't see. Something I didn't even know was there. He hasn't been what you would call extremely sick (apart from the anaphylaxis episodes), but those are enough to warrant a little more searching as to why this keeps happening to Isaiah on a pretty much regular basis. They are also wondering why it seems to be getting worse (more severe) instead of staying the same or getting better.


Dr. Tang also said that Isaiah can be treated with a low dose of oral steroids to help ward off anaphylaxis. We were told (yet again) to make sure we wash our hands after touching anything Isaiah might be allergic to, wash Isaiah's hands often, wash our mouths and brush our teeth after eating foods Isaiah is allergic to, wash his clothes twice (once with the home-made laundry soap and once without), make sure there are no chemical residues in the bath tub (from cleaners), make sure pans and plates are clean and free of oils (really-really-really washed), stuff we have already been doing, but something that needed to be stressed yet again. He reinforced how sensitive Isaiah is to just about everything.


We were given yet another prescription for Isaiah - to make sure that some of his rashes aren't being caused by a virus he is just susceptible to (apparently, some forms of dermatitis or eczema can be caused by a virus). He will take that for 10 days, so at least it's not an on-going med. The steroid will come after next month's visit (we are going back in November).


Overall, I would say the hospital is very nice as well as the people. The friendly atmosphere is even made better by their decorations (they had a stuffed animal aquarium hanging above the info. desk and a room covered with a mural of dinosaurs to name a few). =0) Isaiah wasn't too happy in the dinosaur room - he was getting his blood taken there . . . and he was taken away from the Nintendo in the waiting room (I'm not a fan of him playing video games anyway). =0)


I'm not sure when the labs will come back - that wasn't really addressed (and Dr. Tang didn't speak English very well - nice accent, though). =0) All of the doctors were pleasant and talkative! =0) A completely different atmosphere from Johns Hopkins.


Anyway, I will let you know more a little later . . . when my brain settles and the labs return. I know that God has my little man in the palms of His hands and that God will carry him through all of this. Honestly, Isaiah's the most oblivious - he really thinks that this is "normal" life because he doesn't know any differently (except if he sees something other people are eating . . . and he wants to eat it too). As far as how this is affecting me . . . I remember something that a friend of mine was told while her son was going through a really tough time - just float. Honestly, I don't know what else to do. I could get upset and cry. I could scream. I could try to run away. But I just can't. Sure, I cry sometimes and seeing Isaiah go through all of this just gets to me. But I don't cry every night because I am still happy - every day God blesses me with Isaiah's existence is another day to rejoice! Every day is a gift. I'm not saying Isaiah's gonna die - I can't say that one way or the other and no one has put a time limit on his life (thank God!). But he is human and every day that we as humans live is a gift from God. Besides, God's there with us and He won't give us any more than we can handle - and He is faithful!


Well, that's enough of my novel for tonight . . . =0) Seriously, I could write more, but there is so much to say and so little space to write it (and I'm sure you wouldn't want to read it all either). =0) With that said, my brain is tired and so am I - it's late and Isaiah seems to be sleeping pretty well at the moment. Hopefully, my little man will get some much needed rest tonight (and I will take advantage of his restfulness to catch up on a bit of sleep as well). =0)


Blessings & good night!
Kelly

Wordless Wednesday . . . a little late =0)

Nope, Not Me

I did not sit and try to think of things to write on this Not Me Monday post. Nope, I wouldn't do that.

I did not let my son wear the same shirt 3 days in a row just because he loves that shirt and he would not let me take it off . . . nope, not me!

I did not scream at a spider (the size of a half dollar) running across the carpet. Nor did I throw my flimsy flip flop at it and actually manage to kill it. Nope. Couldn't have.

I did not grab my son for a hug after I hit that spider with a flip flop - I wouldn't grab him trembling over a stinkin' spider, would I? Nah, not me!

I did not wait for one of my parents to pick up that stupid, dead spider (still under the flip flop) because every time I walked past the thing I would shiver . . . nope, definitely not me.

I did not leave that dead spider all day, either.

And, one for Isaiah . . .

Isaiah did not totally make fun of mommy screaming at a spider - nah, he would never do that. He wouldn't even continue to fake-scream and yell, "pider, right dare!" Nope, not my son.

=0)

Another appointment . . .

Isaiah had his 3-year check-up today. It went well, except the ped. almost gave him a flu shot! Yeh, that would not have been good. He also wanted to take Isaiah off of some of his meds - not that I wouldn't mind as long as he didn't have MASTO! =0) Good thing I was there! Sheesh!

Anyway, he gave us a referral to see a pediatric psychologist for yet another evaluation for high-functioning Autism (Aspergers). He had Isaiah answer simple questions like, "how old are you?" and "what's your name?" He also had Isaiah count, add, subtract, and multiply for him (you know - 3+3, 3-1, 2x1). Isaiah gave him the right answers every time! (no surprise there). =0)

I know God knows what He's doing, so I'm not worried about it. Honestly, this is the least of my worries. Yeh, it's another thing to handle, but I know that I can handle it - I have God, right? God has a plan for Isaiah and I am confident in God's plan for him. I know that what God has planned is better than anything I could have ever planned or imagined for Isaiah.

As I have mentioned before, Isaiah is still the same little man to me. He's still just as sweet, just as smart, and just as lovable - nothing has changed. Why would I see him any differently? God has blessed me with this little guy for a reason and I know He will use Isaiah in an awesome way!

Blessings,

Kelly

Wordless Wednesday . . . a little late =0)

Hey, it was a long day =0)

Wordless Wednesday, Continued . . .