Thursday, April 23, 2009

Quick Update

Well, the doctors in St. Pete will wait for us to arrive in May (May 5th). .Isaiah is on a substantial dose of prednisone, but it seems to be helping with his appetite - he's finally eating!!!! Now, I wonder if we can keep up with his appetite! =0) He has been pigging out!!! =0) It's funny how he asks for a hot dog . . . "Just one hot dog, Mom. Just one. I want just 2 hot dogs just in case. Just a 3 hot dogs . . ." He's gotten up to 5 so far . . . "just in case." =0) He's even back to his old self, just a tad moody at times from the prednisone. I will do my best to get a video of that beautiful giggle. =0)

As far as his biopsy results from the procedures - there is no eosinophilic esophagitis! He said that the occasional spitting up will be something we'll have to deal with, we'll just have to make sure it doesn't become regular. As far as the other digestive issues (potty issues), the gastrocrom is taking care of things. Basically, with mastocytosis, you manage the symptoms as best as you can. There were no ulcers and no major irritations, so that's even more good news - the meds are working like they are supposed to. Frustrating answer, but good. I guess I was still hoping that we could take him off some of the meds, but as it turns out that's not an option right now. There's no cure for systemic masto, but at least the meds are managing the symptoms as they arise, it's just a seemingly hopeless place to be. Thankfully, God still gives us hope through Him . . . and we also know that God is the answer for this disease - we know He can heal Isaiah.

So, Isaiah is back up to 13 meds a day (including the addition of the prednisone). We have index cards taped to the cabinets telling us when to give a certain med and how much . . . some Isaiah takes once a day, others he takes twice a day . . . there is also one he gets 3 times a day and another he gets 4 times a day. It's craziness, but I'm not sure what I'd do anymore if we didn't have that schedule - it has become "normal". There's that whole "normalcy" thing again. It even felt "normal" when I had to give the Epi Pen (epinephrine injector) the last time . . . scary that even that has become "normal".

One of my blog friends posted a Scripture on her website that I remember being quoted when I was pregnant with Isaiah. It was that Scripture that gave me the peace for Isaiah's name (Isaiah began jumping when the Scripture was quoted). Isaiah 58.8-9a: "Then your light will break forth like the dawn, and your healing will quickly appear; then your righteousness (or your righteous One) will go before you, and the glory of the LORD will be your rear guard. Then you will call, and the LORD will answer; you will cry for help, and he will say: 'Here am I.'" As He is now, Isaiah's Jesus was with him even then.

God is so awesome!

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