Here at the Kohl's house Alexander and I did very well, too. We went to bed around 8:30 PM and I know I did not move until I woke up at 7:15 AM. I am guessing the same of Alexander because it is now 8 AM and he is awake but does not want to leave his bed :)
I want to write a bit about Alexander today because it is so easy for everyone but the person in the hospital to get lost. I am so so so amazed how independent Alexander has become here. We will walk him to the play room which has volunteer supervised play times from 10 AM to 11 AM, from 2 to 4 PM and again from 7 to 8:30 PM. Of course his main attraction is the Play Station Lego Star Wars game and he is mastering it in a way I never thought a 5 year old could. Today he promised to give me a lesson :) He also takes part in all the TV shows they offer at the hospital, and he won two games/toys for Connor and himself so far. And then yesterday he played so beautifully in the room for over one hour with a Spiderman Toy he had won at BINGO. This is not easy for him in any way and he really tries so hard to be good.
So and now we are on our way to the Hospital to give Ron and break!
It is 9 PM here in at CMH right now and I am waiting patiently for Connor to show any signs of slowing down. He had a pretty good day other then the upset about having his blood taken again this morning. He gets his blood taken on a very regular schedule to monitor the drugs he is taking and what impact they have on him. They want to see how his levels are improving and of course they are closely monitoring his blood pressure and pulse since he is on a fairly high does of steroids. To just give you an idea.... he was taking 40 mg of Prednisone orally in a pill form at home for almost one month. Here he is on the IV version so it goes straight into his blood stream of 560 mg!!!
He is making some improvements in regards to him holding up his head (neck) right now and in him wanting to be out and about all the time. He is still in his wheel chair but we make him walk about 20 steps or so before we give in to him sitting down again. So he is not as lethargic as he used to be. He loves going to the Play Room to color and until two days ago that mend that Mama or Papa colored for him with him directing what color to use. Now yesterday he started coloring on his own again and not getting upset anymore..... We must have about 40 pictures of Star Wars Characters so far and he keeps going- guess what you will all get in the mail when we come home :) haha :)
Connor also got to see Dr. Pachman today and a couple of new Doctors she wanted Connor to meet. I can not remember what department they were from again but one was suppose to be very famous in this field and even won some kind of Reward. They asked about Connors eating and bathroom habits. The funny part was that this one Doctor tried to get Connor to laugh and Connor kept telling him to stop because when he laughs it hurts his neck. Then the Doctor tried to look and act very seriously and Connor could not stop himself from laughing.... Strange kids we have! :)
Dr. Pachman told us she feels bad for us having to stay here for so long and we told her not to worry, that we came here because we asked for her advice and that we know she is the best in this field. Once they get his blood levels to where they want them to and see improvements with his swallowing we will be send home to continue treatments in Colorado.
Dr. Currant (sp) told us that she knows two of the Pediatric Rheumatologists in Denver very well since they went to med school together in CA. If possible Connor might be able to go to Denver just once a week if he could get home care at home with a nurse coming to the house and setting the IV. If he has to go to the Doctor more then twice a week he will most likely get a port put in his Chest.
There also is no question that he will need to be treated by a Physical Therapist and they also want him to see a Nutritionist when we get home. This part is what makes it easy being here at the hospital. Every Department is here and they stop by at different times during the day. It will obviously be more challenging when we get home but as always where there is a will there is a way :)
Oh, and I have to tell you all that Ron and I even managed to sneak out of the hospital for about 20 min today to make a run to the CVS store. We left both boys at the play room playing Star Wars and we left our cell phone number with the supervisor and the volunteers that watch the kids. Well we were just leaving the store hoping to sneak into a Starbuck's when my phone rang. Connor's nurse called that she was picking up Connor to take him to Dr. Pachman and if we like to be there as well. So of course we hurried back to the hospital and made it just in time for Connor to be in the Doctor's Office starting to cry because he wanted us there.
Okay, i think I talked off everyone's ears for today. It is 9:50 PM now and Connor just decided it was time to go to sleep. I am off to the shower and see if I can calm down for the day or watch a movie.
Hugs,
R A C A
I've been thinking a lot about Alex, too, and what we could do for HIM. If you could at least pass along what a great brother we think he is and how it is so great that he is being such a trooper, too. :-)
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