1st IT infusion

Well as many of you may know we are in N.C. again this time for Eastons first IT infusion. This is the infusion where they administer the enzyme into a special port that delivers it right into his spinal fluid and hopefully into the brain.

Day 1 We just did routine test EKG, vitals and some developmental testing. All the test ran smoothly. He was really cooperative with all of them until the very end when he was just sick of everything and wanted to go back to the hotel room and watch the moose ( nick jr.). For the most part the developmental test was nearly finished only a couple of more things were needed and he half heartily did them but they got the information that was needed.

Day 2 We did some O.T. and P.T. type developmental testing. This was the only test we had for the day and for some reason Easton loves this Dr. she even gets kisses when we leave but, then again she does all the fun tests like jumping up and down, running as fast as you can, and on top of all that fun stuff you get to play with things like stringing beads stuff he really loves to do so it's know wonder that she's his favorite right now. Dr. Muenzers Nurse Heather is making her way onto his lists of people he likes. Poor Tiffany on the other hand one of Dr. Muenzers clinic coordinators can't even get a high five she may have to buy her way into his heart you know the with things like candy toys stuff that will melt his heart.

Day 3 The first actual Iduro sulfatase IT infusion on a human (i hope I spelled that right) we got to the hospital around 10 a.m. and they took us up to the surgery waiting room. They had decided that since his incisions were so new and tender that he would do better getting a conscious sedation or something kind of like laughing gas that would put him asleep long enough to access his new port but not deep enough that he would need a breathing tube this worked wonderfully. I was able to go back with him into the room and hold him until he was asleep. Dr. Muenzer was great to come and update me with anything they did. Only after waiting for a few minutes maybe 15 he came in and informed me that his port was accessed and they were able to draw some spinal fluid off of it which was great news if they hadn't been able to get any fluid they would have had to do a spinal tap or lp. From this point we were just waiting for the white blood count to come back because if its elevated to much they wouldn't give him the infusion because an elevated white count would mean that there is a possible infection. When they got his white count back it was fine so they went ahead with the infusion and 3 minutes after, they were done.


Easton woke up really quickly before, they even had him out of the infusion room. He was very mad just screaming so they brought me to him and he still screamed he was so mad because they had taken off his shirt and he wanted it back on as soon as we got it back on and I was there in the room he settled right down and went to sleep. SO EASTON AND EVERYONE INVOLVED MADE HISTORY !!!! I just pray that this not only helps Easton but all Hunter boys now and in the future especially since both of my girls are carriers. I hate the thought that anyone would have to go through what me and James have been through. And after watching Nathan decline neurologically and all that your brain tells your body to do stop working. We can all only pray that this helps these precious boys not have to deal with the complications of MPS II