Tuesday, May 29, 2007

Five Little Joshy’s Jumpin Off a Tree Stump

About a week ago I did this big ole update... Well it took me over 45 minutes to type, and by the time I hit the “post” key the page had timed-out and I lost everything.


Usually I type everything up in WORD then copy and paste it into the browser exactly for that reason... but for whatever reason, probably because it was late, and I wasn’t thinking straight… you know.

Anyway - let’s see if I can recap some of that.

But first -- yesterday we had a quick trip to the ER. Well... maybe not so quick - afterall, it was an ER, on a holiday - but quick(er) than some of the other poor people in there. We were cooking out yesterday and Josh was playing in the back yard and our little Spiderman jumped off a tree stump. Know where this is going yet? He split his top lip open. About 1/2” long, but deep. Required 4 stitches. Halie went with me, she felt SO bad for Josh when the doctor had to give Josh the shot in his lip to numb it. And I felt bad for her, because I know what it is like to feel helpless when Josh is screaming for you and all you can do is stand there.

The cut is on the inside, so the scar shouldn’t be visible, but we’re hoping his lip wont be misshaped after it heals. The one plus side, even though we were there nearly 3 hours yesterday, we really did get in and out. The nurses were sure to keep Josh quarantined from all the germies in there. At this point the biggest concern is infection-risk with his suppressed immune system, of course we are keeping a close eye on this. The doctor did use different stitches because of that risk. I guess I didn’t get all the details there, just that she wasn’t using the dissolvable kind and why. He’s supposed to have them removed on June 3rd… which is a Sunday, so Monday, the 4th, but we will be in Pittsburgh that Thursday, so I’ve gotta call and see if they want the docs here to do it, or just wait til the 7th. No biggie either way I guess.
Looks like Spiderman got in a little tussle with Psycho-boy (aka Nathan)

Okay, on to the last visit. Thanks to everyone for their well wishes. We made it one piece - LOL - didn’t get lost and didn’t break down! We even arrived early. However, we had an unusual visit in that there was an extremely long wait. In the two years we’ve been going, never had to wait so long. In fact, normally they call us back, check weight and do vitals then send us to an exam room. But this time the rooms were full and they sent us back to the waiting room. No matter, Josh had a good time showing Kaitlynn the fish and frog, playing the play center with her, and he even ‘read’ his favorite book to her.

When we finally did get back to a room, Josh colored some more with Kait and was excited to show her how brave he is when he gets his port accessed. He still cried a little, but I think I would too if someone was poking me in the chest with a ¾ inch needle. After the doc came in and did his thing, while we waited for the nurse to deaccess Josh, he fell asleep in Kai’s arms. He didn’t sleep on the way to P-burgh (which he always does) so he really was tuckered. As we were leaving though, Kai was carrying him out of the exam room - he woke up, felt his chest, realized he wasn’t accessed anymore, and let out a huge sigh of relief, “shew!”

LOL - sometimes the worst part is having the tape torn off and the needle removed.

Kai mentioned something to this effect in her latest guest book signing. Josh really liked her coming along. He didn’t even complain when we woke him that morning. Usually, on clinic days, he knows immediately that we are going to The Burgh just by us waking him, and he starts detesting then. But this time he was excited, totally the reason he didn’t fall asleep on the way down. We sang lots and lots of songs. How many times to you think one can sing “Little Bunny Foo Foo”, “Wheels on the Bus” and “Itsy Bitsy Spider” (his favorite song) in a 120 miles?

Speaking of singing... I know you’ve had to have heard the children’s song “Five Little Monkey’s”. You know - the one where they are jumping on the bed and mommy calls the doctor - LOL... When we were in the ER last night, Halie and I did a little parody to that song.

“Five Little Joshy’s Jumpin Off a Tree Stump”

He said he wont do that again! But then today I caught him trying to climb the fence to get to the neighbors’ yard.

Ha! Guess I can count myself lucky that in the past 16 years, this is the first time any of our kids have ever needed stitches (aside from Josh’s surgeries). Knocking on wood that it’s our last!

Funny though... if I was a gambling man, I woulda bet on Nathan being the first to break that record.

About the counts, they were high again, and despite the NP’s warning last month, the doctor decided he didn’t want to raise his meds just yet. I get the impression that they have been raised so much already that he is worried about going too high and risking toxicity. So, let’s keep our fingers crossed for this months counts to come within range.

But again... another good thing... with the high counts, he is able to fight infection a little better, which is a good thing considering...

OH - I almost forgot - thanks to everyone who left messages to Halie in the guest book. She really got a kick out of reading them. The girls and I check the site often and read the messages and jokes to Josh. A funny side note, my cousin left a message then called later that night. When Shelly asked what Halie wanted for her birthday, she got all tongue-tied, put the phone to the side and whispered to me if it was alright to “tell Sissy”. LOL… She has been saving to buy a new bike (since hers and her sister’s were stolen off our front porch last summer) and was modest to ask for money instead. Guess you had to’ve been there, but it was cute. Ain’t that right, Sissy?

Happy Memorial Day to all. This is a bitter sweet holiday for me, as it is the weekend that we sat on pins and needles knowing that the next day (Tuesday) Josh faced the possibility of a cancer diagnosis. (Kinda ironic he had an ER trip on his anniversary weekend). Can hardly believe it’s been a full two years already! I can only hope the next year and some odd months goes just as fast!

Wednesday, May 9, 2007

I married Mario

Hard to believe a whole month went by already. Got a call the other day confirming Josh's appt this week and I had to do a double-take.

Been meaning to update about Josh's last visit, and here his next visit is tomorrow.

The visit itself went fine. Different set of anesthesiologists and doctors (because it was on a Friday) but things went smooth. Weird, cuz they have a different way of doing things (like making us wait in the hall instead of the OR recovery room) but we did get out of their faster. His onc appt went well too. Didnt see Dr Wollman (since he *isnt* in on Fridays - lol) but the phys asst is very nice too. They all are. We never complain. So his counts were high again. From my understanding, his protocol says, if counts are high 3 months in a row, then increase meds. So, if his counts are above 2000 tomorrow, well... we'll see. Of course, I was concerned that we can never get it right. That it seems we finally get them within range, and it only lasts a month then they're up again, but she said he's a growing boy. Good enough for me I guess. At least they're on top of things.

The only downside to the whole day was getting there.... IF WE EVER ARE SCHEDULE ON A VOO DOO DAY (like Friday the 13th) AGAIN - YOU CAN BE SURE I WILL RESCHEDULE!)

In nearly 2 years of driving back and forth to P-burgh, and just under 10,000 miles logged, it was bound to happen....

We got a speeding ticket. adus

93 in a 65 zone.

But in all fairness, it's not like Jon was driving that fast the whole time... he was passing a semi, and it just so happened the cop was sitting right_there, just_then. The cop was nice though, considering. Woulda been nicer if he l would've just let us off with a warning, but you know, it was a voo doo day. They were all_over that day.

Let's add no more traffic tickets to our list of prayers in the remaining half of this journey.

Tomorrow I have to drive to p-burgh myself. Jon cant get off work, so Kaitlynn will be my chaperon. But this is the _first_ time I will drive this myself. Before, if Jon couldnt make it, there was always someone to go with me. So I guess you could add that to your list too - please.

Anyone who knows me well knows - I *HATE* driving - with a passion. Especially long distances. Dont know why, just rather be a passenger. So, even though we've made this trip many many times, hope on this trip that the car doesnt break down, or I dont get lost - LOL

...and let's hope his counts are in a better range. Or, let's pray that the doctors adjust his meds perfectly this month.

OH - and P.S.

Tomorrow is Halie's 12th birthday. If you'd like, you can leave her a wish in the guestbook. I'm sure she'd love to read them. This is her last year in the PRE-teens. She's excited!!