Preformed with Flying Colors

Hello all,

Sorry for the delay in delivering the latest update regarding Trey's very 1st infusion but our computer checked out on us last week.

Mike and I are so happy to report that our "little man" once again preformed with flying colors! Our day was a 10 1/2 hour day as opposed to the 8 hours we expected and Mommy fainted but other than that...all went very well! Trey will go for his second infusion this Tuesday. We should shave an hour off the length of our first day due to the fact that we won't have to got to admitting from here on out and hopefully a bit more just for the mere fact that we've all got the first infusion in our pocket ie: the nurse now has it down (a drug rep. flew in from Ca. to witness and be on hand for any questions the nurse had on administering the medicine), and I promise not to faint again...I'll explain.

I was sitting on the bed with Trey in my lap. A cream was rubbed on Trey's skin around the site of the port, the smell was so extremely strong that at the first "whiff" , I was light headed and nauseous. I turned my head and held my breath (did I mention I hadn't eaten anything yet that morning?) and before I knew it, the baby was off my lap playing, the bed was declined so that the blood could rush back to my head, an oxygen mask was over my nose and their were nine people surrounding me. I guess I was out for longer than the "normal" time, my eye lids stayed open as my eye lids rolled to the back of my head, I became pale, and I was sweating and shaking...who's the patient here??? What a waste of time...that too should cut at least 15 minutes off Tuesdays visit :o)

Back to the infusion...we had expected that Trey would be on a walking "drip line" and that we'd be able to roam the hallways...no such luck! Trey was confined to the hospital bed for a bit longer than 5 hours! To make matters worse, Trey was given Benadryl before the infusion (as he will 60 minutes before every infusion following). For some people antihistamine makes them drowsy, as in Drake, but for our other two boys, Broc and Trey, just the opposite happens...so much for a nap! This is what he/we did for the 5+ hours; watch a movie (sort of), read some books, be entertained by the "child care" volunteer on hand who brought up a super cool police car with lights and a siren, play with play dough, and a sticker book, nap for 10 minutes (at the most), eat lunch and then plead with Mommy and Daddy to play. This baby wanted so bad to get off that bed and play with all the big toys across the room...but he began the pleading about 40 minutes too soon. We know, we know...he is a GREAT baby and we are so lucky for that - to do so well for so long, we are truly blessed! Plus those 40 minutes passed quickly knowing that it was almost time for him to get down to play. He played for an hour as he was visually being monitored for a reaction...but not hooked up to any machines.

As long as it sounds and as tired as we were, it wasn't all that bad. How many parents get to spend uninterrupted time with their child, once a week for 5 hours at a time? We are finding a silver lining to everything thus far and if that was the longest day to be had, it truly wasn't all that bad.

I thought that if Trey didn't have a reaction to the medication during or after this first infusion that we would be "home free" but we were told that it generally takes 3-4 infusions before a reaction would occur as the body begins to build antibodies at about that time and as a result would be when we would most likely see a reaction. So although our prayers have been answered initially, we are still praying deep for the next month of infusion's to see more of the same...a whole lot of nothing.

As for the MRI:
The ventricles are normal in size and position, no shift of the midline, the signal intensity of the brain is normal = normal MRI of the brain.
As for the spine, abnormal cervical vertebrae and tight foramen magnum= we will be making an appointment with a neurologist to go from here with that.

Once again, our prayers have been answered and your prayers are working...much thanks and love!

Sincerely,
Cami, Mike and the boys


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PAR FOR THE COURSE

Hi Everyone,

Trey's first infusion has been cancelled due to the fact that the pharmacy at St. Joe's forgot to order his medicine...hummm, only 49 (Trey being number 50) on the medicine, the first time this medicine was ever going to be administered at St. Joe's (or in the state of Arizona) and only one in the entire US starting an infusion tomorrow...you'd think so many people would have been all over this one ???... go figure!

After the initial feelings of complete frustration, I have convinced myself that everything happens for a reason. Let's see...Trey's incision will have more time to heal, tomorrow is the 13th ya know, I will be able to bring Broc's valentine treats to his class versus him take them by himself on the bus (who knows how they would have ended up or how many would have even made it...pink rice krispie treats with sprinkles have been known to be the "breakfast of champions", esp. to a 5 year old and all of his bus buddies), more time for this hospital (and everyone involved) to get it right, more than likely they will be extra nice to us for a long, long time and I bet we will never have to worry about this happening again - EVER :o)

Thank you to everyone who wished us well...I have been a ball of nerves awaiting the unknown (now I get to wait longer.~maybe another reason...for me to mellow out a bit more before the actual infusion takes place).

We will keep you posted.

Hugs and lot's of Valentine Kisses,

Cami