Flashback Friday

My baby, my dad, and my Martin. =0) (literally May 8 . . . 2006)

Pumpkin Face =0)

My boy and his tricycle (May 8th, 2007)

My brave little man (May 8th, 2008)

May 8th, 2009:

I heard Isaiah singing his new favorite song and decided to catch it on video. When I got to the porch, this is what I found . . . (you might want to turn off the music player at the bottom of my page to hear Isaiah sing) =0)

. . . the toy bins emptied . . . every train he owns out on the train tables . . . and Isaiah driving around in contentment in his big red car. =0)

"I got-a joy, joy, joy, joy down in my heart, YAY! Down in my heart, YAY! Down in my heart."

I love my little goober! =0)

Appointment with All Children's

I have been putting this off since last night because I just wasn't quite sure of what to say. In a way, I knew what kind of response we were going to get from the doctor . . . but I was really hoping to hear something different, an easier solution to this masto thing.

Isaiah's appointment was less than encouraging. The doctor basically said that there was nothing more we could do for Isaiah apart from treat the reactions as they happen. There is nothing that will really help to control the reactions, we just have to hope that they don't get any worse or more frequent. A while ago, I mentioned another drug that might help Isaiah: Xolair. Xolair is no longer an option for Isaiah - Isaiah's sensitivity is just too severe. The doctor also explained that after one year of shots is over, within three months the symptoms will return and could be worse than they were to start out with. The only way they will put Xolair back on the table is if Isaiah's reactions become worse or more frequent . . . it will only give us one year of peace until we can figure something out. Obviously, we would have to resume the injections within 3 months if we can't figure out what to do next.

Another glitch, so to speak, is that we can only use Xolair for 3 or 4 periods of treatment. After that, the shots become too risky. Some of the side effects are also not so nice either as they can cause hair loss and such. His thought was that what's the point in putting Isaiah through all of that when they won't help to begin with. He's also at the point where the shot could cause things to get worse very quickly - he could react to the shot itself (he is that sensitive).

Basically, we will only treat the reactions when they come up (back to where we were). He also mentioned that he thinks the reactions Isaiah had a couple of weeks ago weren't from the anesthesia, but more likely from the procedures themselves - the biopsies scratched, his mast cells reacted. The reactions were held off by the Decadron (steroids) long enough not to happen during the procedure, but his body was still in attack mode once they wore off.

The doctors words felt like weights, and I felt like I was hit in the stomach. He didn't say Isaiah was going to die anytime soon, but said that the reactions are very, very serious and can cause things I don't even want to think about. The fact that Isaiah took longer to recover from the second episode wasn't surprising to him, but concerning - his body still wanted to attack something that didn't exist and we were forcing his body to stop.

His diagnosis was much more firm this time and he added that Isaiah is also "just highly allergic and his mast cells are just too sensitive." As far as a bone marrow biopsy, he said we just won't go there unless Isaiah's labs ever show that it needs to be done. Right now, there is no need to upset Isaiah's system unless it's absolutely necessary.

For now, I'm trying not to think about it all too much - as a good friend said, the details are just details, the only thing that really matters is what God has in mind and what He is going to do. God has Isaiah in His hands; He has this under control and He knows what He's doing. I also know God has more plans for this little guy in this life. Isaiah isn't suffering, and he is (for the most part) very healthy.

Isaiah is eating well . . . steroids can do amazing things! He has even gained 5 pounds back that he had lost! He doesn't look as much like a skeleton anymore. =0) He even has some chub in his cheeks, again! =0) He also seems to have an endless supply of energy - along with a smile, twinkle in his eyes, and a giggle added to it! He does have periods of crankiness, and when he is cranky, he is almost impossible . . . but the smiles make up for all of it. I can't tell you how many times I've heard someone say, "he looks so healthy." Even his local allergist loves to say that. Thankfully, he does. In fact, he looks so good that you wouldn't even think he has masto or these allergies that are worsened by the masto. God has done an amazing thing with Isaiah - he shouldn't look this healthy.

This scripture showed up in my e-mail a couple of days before our trip to All Children's: "Be joyful in hope, patient in affliction, faithful in prayer" (Romans 12.12). There is peace and joy in the hope He gives . . . as much as I want to fix Isaiah's health, I know there is nothing I can do except be patient . . . and I'm not giving up on praying for Isaiah's healing. Thank God He is God and knows what He's doing! =0) God's plan and His way of doing things is much better than anything I could ever want or do. We can walk this road kicking and screaming at the top of our lungs, or we could walk with peace, hope, joy, and patience and learn something along the way. Honestly, I find something else to be thankful for every day I get to spend with Isaiah. Every day he is healthy is because of God . . . every day Isaiah lives, I live, you live is because of God. I'm so glad He holds the future. I can't help but be grateful that God has this under His control.

Isaiah 58.8-9a: "Then your light will break forth like the dawn, and your healing will quickly appear; then your righteousness 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."

Ephesians 3.20: Now to Him Who, by (in consequence of) the (action of His) power that is at work within us, is able to (carry out His purpose and) do superabundantly, far over and above all that we (dare dare) ask or imagine (infinitely beyond our highest prayers, desires, thoughts, hopes, or dreams).

Romans 8.37: Yet amid all these things we are more than conquerors and gain a surpassing victory through Him Who loved us.

Romans 12.12: "Be joyful in hope; patient in affliction; faithful in prayer."

Pray for Emerson White

There's a new button on my page - a button for Emerson White. If you go back through my older posts, you will see prayer requests for this beautiful brown-eyed little girl. She has endured 2 multi-organ transplants, her second being her most recent - 17 days ago to be exact. Not only is Emerson is fighting to recover from the trauma and complications of the second transplant, she is now a serious infection. Please remember to keep her in your prayers as things don't "look" good for her right now. Thankfully, we serve a God who doesn't work based on appearances; a God who calls things that are not as though they are. Please also remember her family during this time as well - her mom is with her in Nebraska, her dad and two older brothers are at their home in Colorado. I know for her family, this is difficult to endure - I can't imagine the distance between the hospital and home making that any easier.

If you want to know more about Emerson, please click on her button or any of the links in this post to read her journal.

Flashback Friday

I came across this photo just the other day . . . I think I was about 3 or so . . . Danielle (the little girl in red) was in Kindergarten. I used to love waiting with the other daycare kids at the bus stop. =0) Yup, I used to be a blonde. I'm so glad my hair changed colors as I got older!!! =0)

Here's another picture of my brother and I with 2 other daycare kids . . . Jen, Kimmy, and I used to get in so much trouble! =0)

Ahhhh, the '80's. =0)

As Wordless as It's Going to Get Wednesday =0)

Say, "Cheese!" =0)

(Oblivious) Deep in thought =0)

She caught me =0)

Cutie pie

And of course, the night would not be complete without Thomas the Tank Engine and his Friends =0)

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!

"Not Me!" Monday

(Sorry if you received this twice - it decided to post before I even wrote anything). =0)

Even though the past week was rough, I have some rather funny "Not Me's" to post. It's actually quite encouraging to know that I still have something funny from this past week - from Isaiah. Even when Isaiah is feeling absolutely horrible, he still manages to keep his humor in tact. =0)

Welcome to "Not Me!" Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

I did not leave our fishies with a food block so they could eat any time they wanted to . . . nor did the pleco (the very same fish that I thought was going to fishie heaven several months ago) eat the entire block, leaving none for the other fish. The pleco is still not bullying the other fish during feeding time and this is not uncommon behavior for this type of fish. I mean, c'mon, the fish even eats (sorry, inhales) food on the surface of the water - this fish should be re-named Pig-Fish (his name is Whale-Fish)! =0) Although, I must admit, the fish is beginning to live up to it's name . . . he's huge!!! =0) Oh, yeah, and I do not have completely strange fish. =0) (must have something to do with green water . . . ) =0)

Isaiah did not attack Ye-Ye when he got home last night and tell him about his eventful week. He also did not tell Ye-Ye that he went to the doctors and his tummy growled and "got bubbly, an when I went a da potty I ppppppppplt!" =0) My little man is not that graphic! (By the way, he also did not repeat the story seconds later, either!!!) =0)

Isaiah did not get feisty while he was in recovery after the procedures and pull out his breathing tube. Nope, not my little boy. I mean it's not like he pulled it out just so he could have his "pass-ah-dur" (pacifier) or anything. =0)

Isaiah did not tell the anesthesiologist and nurses (before the procedures) and ER staff (after he woke up from his episodes) about his bad tooth, nope not my little man! He wouldn't tell anybody about that!!! ;0) They did not look completely perplexed by his explanation of the bad tooth, either. =0)

Isaiah did not stare off into the corner at in the doctor's office, slightly freaking out the ped, while he pointed at the imaginary "wo-bot in outter pace!" The doctor did not look at me wide-eyed and confused as he was searching for some kind of explanation either. I did not begin laughing as I explained to the poor man that Isaiah was talking about Wall-E and that he was obsessed with the whole robot (wo-bot) and space (pace) concept. After my brief explanation, the doctor did not bust out laughing and shake his head . . . by the way, this is the doc that reminds me of House. =0) My kid and making people laugh . . . =0)

I did not buy the socks to match this adorable outfit (which I also did not purchase simply because it matches his bright-blue shoes with holes . . . which I purchased that way on purpose). =0)

I wouldn't purchase those socks, even if they are on sale. Why would I do that? Sure, they go with the outfit and look absolutely adorable on him, but they are of no use whatsoever . . . even if they only cost a couple of dollars at Target. Of course, they do make really good anti-itching guards . . . hmmmmm. =0) (Oh, yeah - these are the photos I promised to post, too) =0)

Isaiah was singing his "Soccer" song (from the Backyardigans) =0)

I am not posting this, again, at 2-something in the morning (okay, so now it's 3-something in the morning) . . . on Tuesday (it was Monday when I started the post). =0) Really, that's not "Not Me!" Monday, is it? Besides, I always go to bed early and never stay up late . . . even if I have a ton of homework . . . =0)

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Quick Update:

Isaiah is doing much better today. It seems like he is having a little trouble recovering from the last episode, but it was the second episode within a few days and his heart was more involved the second time. However, he seemed to have more energy than he did yesterday. He is still not eating well, though - I even made his favorite - special chocolate chip pancakes! He took a few bites and said, "all done!" Apart from that, he had a 2 bites of his burger and 3 mini-ears of corn for dinner. He has been drinking, so at least he's getting something. I am hoping his appetite returns soon, because he's starting to look like a skeleton! Seriously, he has lost weight again. It could have been because of the procedures and not eating for almost 2 days, along with the 2 anaphylaxis episodes this week, but he has lost a lot of weight for a little guy.

Sorry for such a dark photo, but I was also trying to maintain privacy =0)

Please continue to keep him in your prayers!!

I also want to remind you to continue to pray for Emerson, Gavin, and Stellan.

Emerson had her multi-organ transplant on Thursday morning and is doing well. She has been extubated and continues to breathe on her own. She is having a few complications (rashes, high blood pressure, pain, insulin issues), but she is recovering from a major surgery. Please pray that she will continue to recover and that there won't be any complications.

Gavin is home!! His blood tests show that his anemia was a complication with malabsorbtion from the masto and antral G-cell hyperplasia, and not caused by aggressive systemic masto (mast cell leukemia) - thank God!!! He will, however, require strong iron supplementation until his bone marrow recovers, which could cause complications with the masto and anaphylaxis. Please pray for his healing, no anaphylaxis, and no more complications (I hope I have all of that right, Carla). =0}

Stellan is still in the hospital with SVT. As it stands right now, Stellan will be going in for surgery in the morning around 8:00 (Boston time). The doctor wants to do some preliminary mapping before he considers the surgery (an ablation - which is not performed often on infants). Please remember Stellan, Dr. A and his team, and Stellan's parents as tomorrow approaches and the procedures take place. Please also continue to pray for Stellan's healing.