Wednesday, April 29, 2009

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)

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!

Monday, April 20, 2009

"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)


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.

Saturday, April 18, 2009

You're SO not going to beleive this . . .

Isaiah anaphylaxed again early this morning - while he was sleeping. He handled it all very well, though - God's hand resting on Him again. Isaiah barely cried when I gave him the Epi, and fussed a little when he was given yet another IV (his third this week, and 5th poke this week . . . apart from the 2 Epis). Isaiah continues to amaze me with how well he is handling all of this - of course we know that it is God's hand. I even felt more peace and didn't shake when I gave him the Epi this morning. It's such an awesome thing to feel God's peace and comfort in the middle of something so frustrating and painful.

Isaiah's reaction was very similar to the last one, with a twist - he would become rigid and throw his head back to catch his breath. Those are just the details, though. I really have to say how amazing God has been throughout all of this. It would be nice to know why Isaiah is going through this, but I don't need to know why as long as God is there with us. Just last night Isaiah was singing a song about people trying to fill the void - the place where Jesus is supposed to fill. He got to the place in the song where the lyrics change to, "Some people try to find it in the arms of Jesus, that's where I found it . . ." It made me cry - my baby boy knows who is carrying him through all of this. He knows his Jesus is right there with him. How awesome is that???

As far as the physical plan of things, Isaiah is now on long-term steroids to control the amount of anaphylaxis episodes he goes through in a 12 month period. We had two options: Prednisone or Xolair. Prednisone has some nasty side effects; Xolair could be worse - especially with Isaiah's sensitivities. There is also no guarantee that insurance would even cover Xolair for someone as young as Isaiah (it is only approved for patients 12 and older). Honestly, I am more at peace with the steroids right now than I initially was . . . God's hand yet again. Of course, it would be absolutely fine with me if God would just touch Isaiah and heal him right now - all in His time, though. Through Isaiah, God has taught the doctors, nurses, and myself about Himself. God is so amazing!

I also want to mention that it is awkward to walk into the local ER and have the staff know who you are . . . when you aren't employed by the hospital and don't visit just because . . . of course, one of the nurses just happens to be one of my student's mothers . . . and another is my boss' husband (I think I saw your husband on Tuesday, Tracy!!). =0) It's also strange to begin to recognize the EMTs - seriously, the guy remembered us. There is humor in all of this, really. It's also an awesome opportunity to introduce all of these wonderful people to Christ, if they don't already know Him.

Well, I will keep you posted on my little man. =0) We should hear from the GI specialist next week with the biopsy results. We should also hear from Isaiah's allergist in St. Pete next week as well (on Monday). Isaiah has an appointment in St. Pete on April 5th, but there is a chance that can change considering the recent events. It should be fun trying to schedule two appointments around each other . . . two appointments that are about a 2-hour or more drive away from each other (St. Pete and Orlando). =0)

Oh yeah . . . my dad comes home tomorrow!!! =0) In case you didn't know, my dad was in MD for the past 3 weeks (okay so 2 weeks in MD and 1 in WV). I know all of you in MD have enjoyed my dad being there, but we need him back here!!! =0) (We miss you, Ye-Ye!!!) Isaiah heard that my dad was coming home tomorrow and I guess misinterpreted that for today . . . he ran to the back porch and began yelling, "Chiiiiiii-iiiiiiig! Chiiiiiiii-iiiiiiiig! Where are you?" =0) He was disappointed to hear that he won't be here until tomorrow evening. =0)

Friday, April 17, 2009

More Pictures and Flashback Friday

No, my computer still is unfixed. =0( At least I do know that it is the operating system, I just need to make sure all of my files are backed up so that I do not lose anything (I have photos that are not on another disk). I know, always make sure the files are backed up, I just didn't save anything to a disk the past 2 months. Anyway, that will cost about $100 just to do that . . . so, I am waiting to have the funds available. =0)

Anyway, here is what I do have . . .

Isaiah's most recent ER visit (taken from my cell phone, Wednesday):
Still mostly unresponsive . . .
After he woke up during x-rays (they were making sure there was no internal bleeding from the procedures) . . . still very pale, but feeling much better (he was playing with some toys the ER nurse gave him while he was sleeping). =0)
Isaiah's ER visit last year around this time.

My little goober and his "Robot" - he was unhooked by this point, but he still wheeled it around with him. =0)

Sorry, these are the most recent pics I have right now, and he looked so peaceful in the first one - I'm glad he was able to rest, as unsettling as it was for me to watch. Hasn't he grown so much over the past year? It's amazing!!! =0)

I will have a few more pictures to post later of Isaiah and his cool outfit. =0)

Thursday, April 16, 2009

The Pictures I Promised

Easter Egg Hunt =0)

Arnold Palmer Children's Hospital - this is where Isaiah went to for the procedures and to see the pediatric gastrointernologist (GI).

Before the procedure (and before the "robot" . . . IV). He's displaying his, "I'm not so sure about this, Mom, but since they gave me Diego stickers . . . " smile. =0)

Listening to the anesthesiologist - she thought Isaiah was adorable (of course). =0) This was at the beginning of the flushing episodes and the disco-light spots (they would appear, disappear, and show up in different areas - so weird).

Our view from the surgery waiting room - this is Winnie Palmer's Hospital for Women. Isn't it cool??? By the way, we were having severe storms at the same time Isaiah was going through his procedures. There were tornados just south of where we live.

Still recovering from anesthesia . . . I don't think Isaiah has ever slept this good. =0)

He's awake and smiling! =0)

Yup, humor in tact! =0)

I just love this face! =0)

Our post-op visit of the lobby where the trains were. AP also has a "Disney" section, where they have a statue of Dumbo, the Three Little Pigs, a castle, huge trees (they're fake), and a pirate ship (outside). I'm sure there was more, but Isaiah needed to take it easy. We'll visit that portion of the hospital when we go back for Isaiah's check up . . . I'll take pictures. =0)

Update on Isaiah - Anaphylaxis

I forgot to mention last night that the GI specialist was able to confirm that Isaiah does not have eosinophilic esophagitis. That's good, but still doesn't explain a lot of Isaiah's symptoms. The doctor took several biopsies from both procedures, which should be back in about a week (we have an appointment set up to discuss the results).

Isaiah is doing well this morning - he's still a little pale and tired, but mostly back to normal. Thanks so much for your prayers. Things could have been much worse, but God has protected Isaiah from a much worse reaction and has brought him through a pretty bad reaction. God has blessed this little man, and continues to show us how His joy, peace, and faithfulness persists in Isaiah - what an amazing God we serve!!! =0)



Isaiah's procedures went well yesterday - really well. No anaphylaxis in the OR - further explanation of this will follow. He flushed in the OR prep room, had spots that would randomly show up and then go away, but he did sooooo good. I am so thankful that he did not anaphylax yesterday.

During the prep for the procedures, there were a few times where I was wondering if we were going to get through all of this without at least a temper tantrum. Isaiah never ceases to amaze me - he didn't cry, didn't ask or beg for food, and just did a wonderful job taking all the laxitives.

I am also so proud of the little guy! He didn't flinch when they gave him the IV - not one bit. He even watched them put it in!!! He even did great when they took him back to the OR - didn't cry or anything.

Even in recovery, Isaiah did so well. It took longer than expected (the recovery portion), but he was also given anesthesia that is not typical for the procedures he had. He even showed us his feisty side, pulling out the breathing tube! =0) He really wanted that pacifier!!! =0)

We stayed in Orlando last night - just in case Isaiah had a delayed reaction. Isaiah was not admitted for an overnight stay (hospitals and the lack of food safe for Isaiah makes hospital stays difficult), so we had to stay in a hotel nearby (they would have admitted him if we hadn't stayed close by). He did so well last night - eating and drinking without any difficulty. He even did well this morning and afternoon. He was back to his spunky self. =0)

However, this evening, Isaiah had an anaphylaxis episode. We thought he was fine - completely out of danger, and he anaphylaxed. Even after the Epi, Isaiah was extremely lethargic. In fact, they thought about admitting him tonight (or this morning), but again . . . the whole lack of food thing. I think I am going to put a suggestion in the hospitals box about bringing in food safe for people like Isaiah. Anyway, Isaiah was given some fluids, more steroids, more benadryl, and something to help with nausea. Right now, he's okay. He's really pale and has the random spots that come and go (and he flushes wherever you touch him right now), but he's doing much better.

The ER doctor said that his reaction was more than likely because of something he received yesterday - either the versed or the anesthesia. Once the prednisone wore off from yesterday, Isaiah's body responded with anaphylaxis. So, now we have to be vigilant and watch him to see if the same thing will happen when the prednisone wears off from tonight . . . we're going to see the ped and the allergist tomorrow, hopefully we won't have any more issues.

Anyway, I just wanted to let you know what was going on. My brain is so tired from this past week. Easter was a blast! Monday was tiring - laxatives every 20 to 30 minutes can wear a person out! =0} Tuesday was stressful, and today, well, today was just trying. I am so thankful we caught the reaction right at the very beginning - before it got to the point where Isaiah needed more than one Epi. I am also thankful God brought Isaiah through the procedures yesterday and through the episode today. God has really carried us through this - and has shown me how brave and beautiful my little boy really is! =0)

Thank you for your prayers - we felt them. Isaiah and I had so much peace yesterday throughout the procedures. We even had a Christian anesthesiologist who was praying as well (by the way, Arnold Palmer is a wonderful children's hospital)!!!

I do have pictures to post, but I will post them later when my brain wakes up a bit more. =0)

Saturday, April 11, 2009

Quick Update

The GI office just called to tell us that they had a cancellation in the OR - Isaiah will be going in for the procedures at 10:30 instead of 12. We will be at the hospital at 8:30 tomorrow morning. Isaiah is doing well right now with the no food thing - still no poop, but I'm sure we'll get there. =0(
I also wanted to let you know that cell phones in our area are not working (I think it's affecting central Florida), so if I am supposed to call you, it may not happen until I can call from a regular phone. I will make sure you are contacted, even if I have someone else call you. =0)
Thanks so much for your prayers!

Well, my computer crashed. I am typing on a borrowed computer for now. Windows Vista - ugh!

Anyway, we got a call from the doctor's office yesterday to tell us that they were changing the time for Isaiah's procedures on Tuesday. They said that since they were expecting complications (aka. anaphylaxis), that they moved Isaiah from the GI Suite to the OR - he is now inpatient for 2 very common procedures (an endoscopy and sigmoidoscopy). That was a scary phone call. Because they had to book the OR, Isaiah's procedures will be done at 12 instead of 8:30 - not so good for a hungry boy, but at least they will be more prepared. It just makes you come back to reality that something could go wrong, the doctors are expecting something to go wrong, and that this disease Isaiah has can be quite serious. Thankfully, we serve a God who can do the impossible - a God who can heal Isaiah and carry him through this.

As far as I know, Isaiah will still receive gas and will still receive IV prednisone, benadryl, and zantac before the procedure, and he will still be intubated. This is all because of his allergy to soy (propofol, the usual sedative, contains soy) and because of his past history with anaphylaxis. I have not heard from the anesthesiologist, so I am still hoping he decides to stick with the gas and not change to the propofol (which is not good for Isaiah's known allergies and it is also known as a trigger for masto reactions . . . aka, anaphylaxis, at least for Isaiah).

We have started the preparation for the sigmoidoscopy - not too bad yet, but won't be too pleasant on Monday (the worst part of the prep). I don't think Isaiah will be a happy camper on Monday. =0( At least we'll be near the potty!!! =0) It looks like Sunday (tomorrow) will be the last day Isaiah can pig out. I have made chocolates for him and we'll have a turkey and some other yummy stuff so that Isaiah can have a yummy day of eating before Monday's fast - yup, no food. He can only have clear liquids, jell-o, and popsicles . . . except for the ones that are dark-colored or red. =0) So, we'll be making popsicles tomorrow and tons of apple juice and white grape juice. =0) He'll like the popsicle part - he loves his "ice cream!" He can also have chicken broth, but he's not too keen on the whole soup thing.

He is having a rough time today - he is very quiet and calm. Almost like I sedated him! =0) He is awake and alert, he just doesn't seem to want to jump around much. Now that I just wrote that, Isaiah decided to dance. =0) Little stinker! =0)

Please, keep Isaiah in your prayers Monday and Tuesday. As I mentioned, his procedures are at noon - we will be at the hospital by 10. I will try to write an update as soon as I can (the place we'll be staying has Internet access and public computers). Thanks for your prayers!!!

(Oh, yeah . . . I forgot to mention that this will be my 100th post!!!) =0) Who knew I had so much to say??? =0)

One more thing . . . Happy Easter!!! =0)

Friday, April 3, 2009

Flashback Friday

Isn't it amazing how one year can change you so much? =0) My baby is growing up sooo fast! =0)

Please Pray for Gavin

Just a quick update on Gavin. Carla posted an update on Gavin earlier today:

Friday, April 3, 2009

Update by Mom
Hi everyone,Gavin is doing okay. They started an IV late last night and it has been running fluids into him non stop. They took more blood and his red blood counts, hemglobin, hematocrit, and MCV are all really low. The endoscopy is at 3 pm today and we will decide the next steps after that.He is doing really well considering. He is being so sweet to all the nurses and doctors and cooperating with all the numerous pokes he has had so far. His sweet and content attitude makes this less difficult to deal with. The nurses are really awesome and we are in a really nice room all by ourselves--we are tremendously blessed, even IN this.Thanks for the continued or Angela will keep you all posted.xoxo


If you look on the right of the screen, I have several buttons with pictures of various children . . . one of them is Gavin. I met Carla through my blog and have gotten to know her through e-mail and through her blog. Gavin has Systemic Mastocytosis (as does Carla and Chelsey) along with Antral G-cell Hyperplasia (a stomach disorder). Antral G-Cell Hyperplasia is very serious, in that it causes an excess of acid in the stomach - so much so that Gavin was receiving more than an adult's dose of antiacids and meds to decrease the production of acid.

Last night, Carla left a message on Facebook that they had to take Gavin to the hospital last night. He had labs done a little bit ago, and his blood work shows that Gavin is bleeding internally. His doctor called Carla to tell them to go to the hospital immediately and to be prepared to stay for a while. They started an IV last night and will do an emergency endoscopy this morning to see what's going on. It is possible that Gavin may need an emergency gastrecotmy and vagotomy (removal of a portion of his stomach and a severing/removal of the nerve that tells the stomach to produce acid).

Please keep Gavin, Carla (Gavin's mom), Tim (Gavin's dad), and Chelsey (Gavin's sister) in your prayers.

Here is the latest from Carla's blog:

Gavin admitted to Miller Children's hospital
Hi all,
I am posting on behalf of Carla to let you know that Gavin has been admitted to Miller Children's hospital. Gavin will most likely be having an IV placed tonight. This is something that does trigger his mastocytosis to react. He will be having his endoscopy tomorrow at 3 pm. this means that he will not be about to eat at all tomorrow. Please pray for Gavin and for wisdom for the doctors and nurses. Gavin is happy this evening please pray for this to continue.
Thank you