ALL about Caleb

so we went today & a cbc was done. the dr said something to the effect how he would suspect hepatitis except caleb is not showing the symptoms that would go along with that (no fever & acting just fine & bilirubin is normal!!!). his liver "ast" was 41 on 3/25, now it's in the two thousands & his "alt" was 54 & now it's in the thousands as well so we're hoping it's just some sort of lab error. an ultrasound is gonna be done on tuesday cause nobody was available today (& monday is a holiday). the dr isn't too worried cause caleb's been acting normal so we're not too worried either. as a precaution he stopped two of caleb's meds that could affect the liver (mercaptopurine & methotrexate) until we can get to the bottom of those funky numbers. his counts all dropped very slightly but they are fine according to the dr...

went to san antonio yesterday. we're supposed to go on a 3 week break where caleb can be a somewhat "normal" child (resume normal activities within reason & lots of handwashing) which is awesome!!! but alas, i got a phone call this morning. the dr is concerned cause caleb's liver levels are elevated so he wants us there tomorrow morning so he can do some more testing. i asked if it was cause he needed more water (it's hard to keep him hydrated)& the dr said it probably has to do with his meds & hopefully its just something temporary...

no news is good news...which is why i haven't posted in almost a week. but anyway, the visit on wednesday was good. we are in "interim maintenance" & caleb needs to take a whole crapload of meds. one is taken sat,sun & mon. 2 are taken everyday. every wednesday he takes a total of 6 pills at one time. i have a calendar on the fridge to keep track. (i'm so proud of him cause of what he just learned; how many other people have a toddler who can actually swallow pills whole!) & there are the steroids that he's on for 5 days. yuck!!! (they give him mood swings & cravings). i've experienced the mood swings already but i'm not sure if that's just him misbehaving. so at the doctor's office he did well when the nurse was accessing his port. he pulled up his shirt for her & he didn't cry as much. he loves to flush the line. even caitlyn got to help! it was an easy day cause they just did a cbc. all the numbers are pretty much the same as last time which is good.

I've heard of people mention the taste of adrenaline but I never experienced it myself until yesterday morning. Boy, what a scare!!! Since Chris is now on mids we've started going to sleep a little later to wake up a little later. Well, when I answered Caitlyn's calls at about 10 am I noticed Caleb was being a sleepyhead. Usually both are sitting up in bed talking to each other or just playing by themselves quietly. So anyway, I tried to get him up but he was really weak. He couldn't stand up in his crib. So I took him out & he was kind of floppy. It was very difficult for him to keep his neck up & he kept wanting to go to sleep. I started getting that bitter taste & I screamed for Chris. I left Caleb on the floor & Chris was already at his side by the time I got up & ran for the phone to call our doctor (who wouldn't it figure- was not available! so we got instructions from the on-call doctor). We were told to go to San Antonio but I was freaking out & told Chris I was afraid Caleb would fall asleep on the way there. We decided to take him to e.r. here. He asked for lots of water-even at the e.r. & he asked for popsicles, which was strange cause even though he's a kid, you'd think he normally likes popsicles, but he hasn't in a long time so I was surprised when he ate 2 of them. I'm thinking maybe his blood sugar was really low. By the time we got to San Antonio he was fine but needed to be checked out anyway. When I was comparing his CBCs I noticed his white count more than quadrupled since his last visit on the 10th so I called the doctor & he said that was normal...that maybe his body was trying to fight off an infection. Caleb slept with us in bed last night. I woke up every 30 minutes checking his head for a fever. Thankfully he woke up as if yesterday never happened. Actually, I take that back...he did say this: "Thank you for taking me to the doctor mommy."

Caleb's doing great! He's been very talkative lately. His old self! We'll see how it goes tomorrow with his behavior. He's finally realizing there's a routine to this. He's starting to get comfortable at the doctor's office (not as much crying) but he still is apprehensive. His color looks great so I'm doubting a transfusion will be necessary. Caitlyn & Mike will be going with us tomorrow. It's wonderful to see them playing (& fighting) together again! They're doing their morning talks again too (ah, the joy of having twins :)).

Everything's going good right now. Caleb's been walking around like crazy today & yesterday. Yippee!!! Wish I could take them to Brown Plaza. We used to do those kinds of things. We would have gone to "Picnic in the Park" at Greenwood Park if we could have too. It sucks trying to stay isolated. Sometimes it feels like we all have cabin fever. We will be going to San Antonio on Tuesday instead of Wednesday next week cause Doc's gonna be out of town.

Going for our weekly visit tomorrow. My father has an appointment as well so they are going to follow me up there which will be nice. I love having my parents around. Poor Mike will be spared of boredom & backache (I heard he hurt it yet again a few days ago...I asked him about it & it's never going to get better...20 is too young!!!). So anyway, things have been going pretty good. Caleb started standing day before yesterday. Yesterday he was actually walking & giggling & laughing;I caught glimpses of his old self. He reminded us of Bambi walking for the first time-kind of wobbly. After a while he was doing some speed-walking thing with this look of determination on his face like he was in a race. I had to remind him to WALK SLOW cause otherwise he'd fall again like last week. Well, he's calling & Chris just stepped in the shower for work so sayonara.

Yesterday was hell!!! Talk about feeling like a *itch. I lost my temper with the kids. I can only take so much crying & whining. It reminds me of that episode on my favorite show "Desperate Housewives" where Lynette is having a minor breakdown at the park. O.k. It's not that bad. But boy, do I feel rotten. I had to put Caleb in time out. Doc says just cause he's sick doesn't mean he can get away with everything. It is so hard to discipline right now though. Today is much better though. All of us woke up in a great mood. Caleb was trying to walk earlier (he rolled onto his belly & slid down the sofa to try & stand but that's as far as he got). He's been really chipper thus far. Caitlyn has been such a good girl too. No temper tantrums. Today my school is having a plate fundraiser for us. I cannot express enough thanks. I'm so proud to work at a place with such caring people. It's very humbling.