Can you believe it has been 18 times now, not for Infusions overall as we had many more of those, but for the IVIG Infusions? Time sure flies and we had some great news all around yesterday during our eight hour stay at 'The Children's Hospital (TCH)' in Aurora.
We arrived at TCH bright and early at 8:15 am after leaving the house by 5:30 am. The drive is always nice and easy until we get to 225 in Denver. That road is more a parking lot and stop and go then any other road we have to take on our trips to TCH. I admit I was very amused to see a construction site with a worker holding up a sign for us to drive slow when we were moving 5 mph to 10 mph the most. I was wondering if they would prefer us just going into reverse? - haha
THC Staff was as always efficient and great. Connor was very nervous having a new Nurse and no more 'Amy' but there was no reason to worry. She was wonderful and very attentive. She even called Radiology to find out how long the Bone Density Scan would take after Connor asked her. This was not part of her job but she really went out of her way to make Connor comfortable and less anxious. No issues at all with the Port and the labs were taken with no problems as well as setting up his three infusions.
Miss Patty was there at hand to have two sessions of Arts and Crafts with the boys who got to color in their room but also during group sessions. They were happy to play with shaving cream again as well :) The time went by fast as in between coloring we watched Harry Potter and Scooby Doo and ate lunch.
Dr. Soep came by a bit after 1 pm and was very happy with the blood test results. Connor is very stable and only a couple of numbers were a bit high. So the wonderful news were we get to cut back again on the Prednisone! From 0.75 ml a day to 0.5 ml a day!!!
The other change came from Connor, who asked Dr. Soep if he was still anemic. She said 'No', so Connor pushed and asked if he could please stop taking the yucky Iron Supplement. Dr. Soep told him that she will make a deal with him ... he can stop for now and if his next blood readings are still good and he is not anemic again then he is off them for good, but if he is then he has to get back on them ... HOWEVER, she said the good news is she will then give him a prescription for swalloble pills and no more liquid.
Oh you should have seen Connor's face, he was smiling from ear to ear and I told him he can be very proud because he took initiative and asked her instead of not saying anything. I told him I was so proud of him because nothing will happen if you don't ask and even if you don't get the answer you like at least you tried and you got an explanation as to why not.
So less Steroids again and no more yucky Iron. A big success all around. Dr. Soep also told me that we should talk in about four weeks as to how Connor is doing and if he is doing well that we should consider pushing back the next IVIG Infusion from six weeks to eight weeks. This is heavenly news for me! plus I am sure our Insurance will be very pleased at $10,000.00 per Infusion ;)
After seeing Dr. Soep we left for Radiology and Connor did very well. We will not get the results until later this week or early next week but we are of course very hopeful. Everything has been going so well that I can not picture this test coming back negative. Now we will get one more prescription filled for the Hippo Therapy. Dr. Soep agreed that he can benefit from more Therapy to strengthen his core muscles and balance.
Our drive home was pretty easy with the boys falling asleep within 10 minutes of being in the car.
I only had one complain on the drive home but then that is a pet peeve of mine so what can I say :) Tell me, how is it okay to drive 65 miles an hour on a 60 miles an hour zone behind a car that decides to slam on his breaks because he sees a Police Car sitting on the side of the road with a Laser Gun? This driver had us all slow down to 45 mph to then speed up like crazy as soon as we were over the hill and the cop was out of sight. I really think those are the people that should be pulled over for upsetting traffic and being just purely annoying to me - haha.
Thank You today to Kim M. who was wonderful 'company' to me all day yesterday via txting. Her son was in Surgery yesterday so we kept talking to each other with updates all day long. Glad all went well for Grant and that he is feeling well today!!!
Hugs,
R A C A
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