Happy 4th Birthday, My Little Man!!! =0)

That's right, Isaiah officially turned 4 at 6:28 pm this evening!!! =0)

It's amazing how 4 years ago today, my little man was born. It's also amazing how my 10 pound, 3 oz. and 23 1/2 inch-long child is now close to 50 pounds and 48 inches tall! =0)

I am so grateful that God blessed me with this little guy - the little guy that doctors said wouldn't be here. I was told that I may not be able to have children, and God answered my prayers and blessed me with my beautiful Isaiah.

Isaiah,

May you continue to grow (physically, mentally, and spiritually) into the man God created (and calls) you to be. You are amongst the most wonderful blessings God has ever given me, and one of His most beautiful promises to me. Though things haven't been easy for you, you continue to radiate His joy and peace, and even His comfort and faithfulness. You have even shown me how to live out a child-like faith. May you know His abundant blessings today and every day for the rest of your life.

I love you, my little Scrunch!

Anaphylaxis Stinks!

I can remember, 4 years ago, begging and pleading for God to make Isaiah make his appearance. =0) I remember driving to the doctors office thinking, "I'm sick of this bed rest. My left side hurts. I just want to see my baby!" I hoped that maybe, just maybe, they would finally tell me to go to the hospital because Isaiah was going to make his entrance into this world today. Well, the doctor made me go to the hospital because he thought I'd had enough - Isaiah was 5 days overdue and he was causing blood pressure issues (little did we know it was his size that was causing those issues). Finally!!! =0) Anyway, I drove to the hospital only to wait until the next evening to actually see my little man's face.

Well, today I found myself back in the hospital. Only this time, it was the ER and it wasn't for the most joyous of occasions. Isaiah anaphylaxed again this morning. I feel so bad for the little guy, and I felt almost helpless . . . except for God's strength. I feel like I am getting use to the concept of giving an Epi . . . I can't say that I'm completely used to it, though - I ended up shaking and crying later. Isaiah didn't even eat anything (nor drink anything) this morning - he just didn't seem to have an appetite. I gave him all of his meds and an hour and a half later he was vomiting, having trouble breathing, and turned blue. No noticeable swelling, no hives, very little flushing. Just the look of fear in his eyes.

I gave the Epi, gave him a nice dose of Benadryl, and cleaned him up while praying, praying, praying. Thankfully, he never lost consciousness - he kept those beautiful eyes open the whole time. He did so well. In less than a minute, Isaiah was breathing well again. Within a few more minutes the ambulance arrived to transport us to the hospital (and yes, we recognized the medic from a previous ER trip).

Once we got to the hospital, Isaiah was doing so much better. His color was returning and his blood pressure was almost normal - you could barely tell anything had happened . . . except his tummy still hurt and he had a head ache. =0(

I can say that we have had more "pleasant" trips to the ER - I was told that I gave the Epi unnecessarily and that my definitions of anaphylaxis and lethargy were incorrect. I was also told that Isaiah was turning blue because he was holding his breath and that his vomiting was "just a kid thing." What!?! Apparently, not all doctors (especially ER doctors) know what anaphylaxis is nor lethargy (which just so happens to mean "abnormal drowsiness, the quality or state of being lazy, sluggish, or indifferent" according to the Merriam-Webster dictionary) are, at least in the fullness of the definition. I do want to add, it wasn't a nurse who made me feel like I was making mountains out of mole hills (to steal a phrase from my dad), but it was the doctor! A quick call to Isaiah's allergists straightened everything out . . . and the doctor will receive a packet of information on what these terms really mean.

I was already feeling horrible that my baby anaphylaxed again . . . twice in about 3 weeks . . . 4 times in the past 2 months . . . what am I doing wrong? The doc really didn't need to add to that by being rude. I was also told that Epis don't work that fast and that the Epi was already out of his system by the time we got to the hospital, so why was Isaiah doing so well if it were anaphylaxis? Hmmm, let's see . . . anaphylaxis, Epi administered, Benadryl actually given and stayed in his tummy long enough to be absorbed. Sorry for the added emotions - he really irked me. I guess it's one of those, "don't mess with my baby," things. Needless to say, the doctor is being investigated . . . this is also the second time we have seen that particular doctor . . . we had a similar experience with him before.

Anyway, back to Isaiah. Isaiah is doing much, much better. He was bouncing around as if nothing had happened . . . sort of. He was irritable, which is to be expected, but at least he doesn't seem to be swelling or anything like that. He didn't eat too well, but that's to be expected, too. At least he doesn't seem too tired. Thank God.

I can't begin to tell you how comforted I was by God this afternoon. Every time I thought that I wasn't doing enough for Isaiah God redirected my thoughts. He even kept me sane throughout the whole ordeal. My brain worked with me, even though I was tired to begin with (I was up late last night and got up earlier than usual). I didn't even feel nauseous (though you'd think I'd be over that one by now). =0} And Isaiah - he was so calm after the Epi (he was crying and asking to see a doctor). God is amazing. I'm glad He's my sanity and my peace.

Anyway, please keep Isaiah in your prayers. We are still waiting on the platelet count . . . hopefully tomorrow . . . =0)

More tomorrow . . . =0) - Happy early birthday, my Isaiah!!! =0)

Happy 47th Anniversary . . .

. . . to the most wonderful parents!!!!

June 23, 1962

More wedding photos

May you have many more happy, peaceful, healthy, and blessed years to come! =0)

A Few Goodies =0)

Oh yeah, I forgot to mention . . . THE COOKBOOKS ARE READY!!!! =0) Remember the cookbook I talked about a while ago (the one from MastoKids)??? Yup, it's ready. Well, it has been for a while, I just forgot to write about it. =0} However, it's a wonderful book with a ton of yummy-sounding recipes. I just purchased mine, so I haven't had the time to try it out yet (I also have to modify the recipes so they will be safe for Isaiah . . . this is a regular cookbook, folks). =0) Seriously, a regular cookbook, not an allergy cookbook (though there are about 26 recipes in there from my modified stash and conglomerations that are safe for Isaiah and people just like him). There is even a pic of Isaiah in there. =0)





If you're interested in purchasing one, please visit http://www.mastokids.org/. The money used to purchase the cookbook will go to Masto Kids to further research and awareness of mastocytosis.


You can also help support further research and awareness by purchasing some of their other goodies, such as car magnets, bracelets (the silicone ones), medical and other informational brochures, little cards that explain spots (they even work to explain Isaiah's rashes), pins, t-shirts, pens, writing tablets, etc. So, you can also purchase a few other goodies to give as gifts for birthdays and such, or to give to yourself . . . hint-hint. =0)

I'm Seeing Spots!

Well, considering I haven't updated in a little bit - things have been sooooo hectic here. I figured that I should write a quick post to let you know that Isaiah has been doing okay. I would love to be able to say he is doing great, but he has been getting those lovely red spots (which haven't seemed to be acting like they have been . . . you know, disco-like). On top of that, he is flushing still. He has had some problems with swelling, but not as bad as before the Prednisone. I guess that means slowly things are returning to normal - I hope. The spots, though, have been a little weird this time. Last Monday, Isaiah got these red spots on his arms - just on his arms. Just spots - not raised or itchy. Just red spots like he had put droplets of red Kool-Aide on his arms (that's pretty much what the disco light-like spots look like). The spots showed up again on Tuesday, but briefly. By Wednesday, they showed up and were itchy. On Thursday, they were raised with little blisters this time. By Friday, those spots began to heal and are now scabbed from the blisters. They aren't big spots, but still weird. He's never had this before, but I know that it's not uncommon with masto.

With the heat here, I'm not too surprised that Isaiah's body is reacting - it's hot! He even had problems yesterday - it was 103 without the heat index. YUK! I think had I known how hot it was, I would have kept him indoors the entire day. Not knowing (until it was too late, anyway) caused a lot of flushing (even with the vest), and we almost had another hospital visit. Anaphylaxis takes many forms, and can include unconsciousness . . . Isaiah became lethargic and just acted very different. Thankfully, no Epi was needed, as Benadryl and Hydroxyzine seemed to stop the reaction . . . along with air conditioning and a bit of rest.

Today, the weather remained the same. I miss cool/cold weather. =0) Yeah, I know, Florida is not the place for such weather. On the other hand, Isaiah's body doesn't like cold weather either. If anybody knows a place where the weather stays in the 60's and lower 70's all year, please let me know . . . I'd move there in a heartbeat! ;0)

The Prednisone is causing Isaiah to have a slightly rounder face - it works with his dimples, though. =0) It's actually nice to see him with a little chubs on the cheeks. Before the endoscopy, Isaiah was soooo skinny. I think the last time he was weighed (at the hospital almost 2 weeks ago), he weighed around 50 pounds! =0) He's tall, so 50 works for him. I have to say though, when he went to bed last night his face wasn't as full as it was when he got up this morning - his face was so round! =0)

I am looking for a medical stroller for Isaiah, to help on outings. Baby strollers aren't big enough nor strong enough for Isaiah (a regular baby stroller goes up to 35/40 pounds, our old one only went up to 45 . . . and Isaiah was way too long for it). I found one, but I'm having a hard time finding a place that will work with insurance companies - the things are expensive!!! =0) Seriously, this stroller costs around $450 . . . on sale . . . and it's one of the cheaper ones! I found it on sale, which would be nicer for the insurance, but the places who offer it do not work with insurance companies - I was told that they would submit paperwork for me to be reimbursed . . . yeah, like I have that kind of money lying around. =0) Right now, we have a wagon. It works, it's just bulky . . . and it doesn't fit well in the trunk of my car. So, when Isaiah's legs hurt or he isn't feeling well (like yesterday), I end up carrying him . . . my 50-pound child . . . who's tall . . . yeah, it hurts. =0) I love it when he wants me to hold him - you know, it brings back all those memories of him being a little baby. He's just getting too big. =0( (it's a good thing, I know) =0)


We are still waiting on the results from the blood tests (platelet count). We should have heard something by today (I called, but got no response . . . yeah, it's the pediatrician's office that will no longer be seeing him). =0) Really, I don't like switching doctors. In MD, I used the same PCP for over 20 years. However, there are times where a new PCP might be in order. Anyway, hopefully we will know the results by tomorrow, but it's hard to say. I guess no phone call is better than an urgent one, right? I'll keep you posted.



In other, not-so-medical news, Isaiah got to play in a ball pit for the first time ever (if you think about it, ball pits are usually in restaurants or in malls near the food courts - places Isaiah can't go)! He was sooooo excited and hasn't stopped talking about it since (thanks Tracy, Kathy, Peggy, and April!!!)! =0) He thoroughly enjoyed himself and has asked to go back to the "playground room." =0)

Oh yeah, and guess who is turning 4 on Thursday???? Yup, my little baby boy will be 4!!! Yes, I will post pics of his special day!! =0)



That's all for our happenings around here. There's a lot to keep up with . . . oh, yeah, one more thing. You know how I was talking about the heat??? My dad (yup, you read that right, my dad) is even complaining about the heat! HA! This is coming from the man that wants to roast all of us in the house, he's actually saying it's hot! =0) Just thought that was funny. =0)

Prednisone, Again . . .

We finally made it back from St. Pete. I thought the trip would never end! We did stay in a nice hotel, but the driving directions to that hotel (and consequently, to the hospital) were very incorrect. Go figure. =0) Anyway, I'm thankful we were able to stay in a hotel and not in the hospital (as nice as that hospital may be).

The doctor was concerned with the way Isaiah's body was handling the last episode. In fact Isaiah started breaking out in his office (and later on last night . . . we were really close to making a visit to All Children's ER last night because of a rash a lot like the one on Wednesday). Anyway, the doctor said that Isaiah was still swollen (most notable was his esophagus) and thought that Isaiah's lungs were also irritated/inflamed. His eczema was also flaring up quite a bit, as is the spot that never goes away on his foot (which also happened to be infected, again - a very common occurrence). So, Isaiah is back on prednisone . . . for at least 4 months. During those 4 months, Isaiah's dose will be decreased gradually, hopefully weaning him off by the end of the 4th month. Hopefully things will go as planned, otherwise, Isaiah will remain on a particular dose for a period of time . . . no idea how long that "period of time" will be, either - hopefully, we will never have to find out. The doctor also increased Isaiah's zyrtec from once a day to twice a day - he is now on an adult dose. The same goes for nasonex, which is now a daily med. Isaiah is not even 4 and is on adult doses. I hate the sound of that.

I also showed the doctor the photos of Isaiah's last skin reaction and his (normally emotionless) reaction was a horribly saddened face with a, "Oh, oh poor baby!" =0) Not that I didn't feel bad for Isaiah, but it was funny to see the guy's reaction - it's the first time we've seen any emotion from him. He also kept saying, "He is just very highly allergic, he is just very highly sensitive."

On the bright side, we (when I say "we" I really mean "Isaiah") got the doc to laugh. =0) Leave it up to my Scrunch! =0)

Other than that, the appointment wasn't all that productive. As the doctor said at the last appointment, there isn't much else we can really do for Isaiah at this point - he's on just about everything there is (that is approved by the FDA) to treat the symptoms. There is no cure and nothing to stop every symptom from happening - you treat it as it happens. Another thing I hate about masto. Right now, medically speaking, prednisone and adjusting dosages is all we have left. As I mentioned before, Xolair could make things immediately worse or make things worse when the year of treatment is up. So, Xolair is not an option because it just won't help. Even though the news isn't all that wonderful, things could be so much worse than they are. I am so thankful that we know and serve a God who can cure this (and in the words of Isaiah, "I win!"). =0)

I did show the doctor (Isaiah has more than one at All Children's that handles his case) the cooling vest and he thought it was an awesome idea and really liked how it fit Isaiah's personality. He also liked the ventilated shoes. =0)We did stay for a second night in St. Pete just in case - the doctor didn't like the idea of us leaving until the steroids had an extra bit of a chance to start working. He also wanted to see him if he were to anaphylax again while we were there. I have to say that I'm pretty sure the steroids have kicked in - Isaiah is already pigging out! =0) That's actually a good thing because he had also stopped eating again . . . except for popcorn. =0)

As for our planned vacation that would have been this coming week, it has been cancelled. We were planning to go to MD for about a week, but Isaiah's doctors do not want him to travel right now . . . you know, apart from a 3 hour drive to the doctor's office in St. Pete . . . 3 hours each direction. =0) Seriously, though, a long trip (even a short one by plane) would be too much for Isaiah right now. Especially since each state has its own environment - new environment = allergic reaction. Not to mention the stress of travelling, alone, can cause a reaction. I guess we'll have to wait for a vacation until Isaiah's symptoms decrease. Hopefully, we'll be able to take that trip next month.

Well, that's all I have for now. =0)

Very Quick Update on Isaiah . . .

I figured I would let you guys know that the allergists at All Children's reviewed the pics of Isaiah's reaction last night and want to see him on Friday in St. Pete. If we have any more reactions like the one last night, we are to go straight to the ER and have the ER contact the doctor on call. The allergists are concerned that Isaiah's body is just not getting over the last reaction. There was also brief talk of prednisone again (he stopped prednisone about 2 weeks ago).

On the bright side, Isaiah is doing a little better today. He still has a residual rash on his face and chest from last night, and continued to have the dark circles under his eyes and pale skin. He has also been spitting up quite a bit today (which had subsided). The leg pain was off and on today, though he seemed to be doing pretty good this evening before he went to bed. I did notice that his lips were swollen tonight.

Thank you guys so much for your encouraging words and for your prayers - they mean so much to us!! I will keep you posted.

Blessings!