September 11, 2005
September 11, 2005 | Updates
Someone mentioned today that it was 9/11. I’m sure that date brings back memories for all of us. One thing I’ve realized through all of this is that you really can never understand what others are going through unless you go through it yourself. I can never understand the pain that people who sufferend through 9/11 or the sunami or the floods in New Orleans have had to go through. I can do my best to empathize, but I can never truly understand it. That’s why it’s so important to realize that not only did Christ suffer for our sins, but he also suffered all the pains and agonies that we would go through in this life. He truly is the only one who can understand our struggles because He has been through them all. It’s comforting to know that.SUMMARY: Today was a nice slow Sunday. I did convince the doctors to order a CT scan of Samuel’s brain before we head home just to ensure there is no swelling or pressure in his brain. So we did that today. I also learned a few more things about his care. He does have a nasty cough and a runny nose, but he’s had those for about a week, so they should be headed out. He was happier today than yesterday and his joints feel really loose to me, which I am happy about. We also raised his baclofen pump to 1500 micrograms per day. He seems to be sleeping better. So we’re headed in the right direction.
DETAILS: Samuel slept last night from 10:30 pm until about 4 am and then again from 5 am until 8 am. He was napping for a bit when I got here around 9 am. And he took a real good nap from 2:30 pm until 5 pm when we finally woke him up. We raised his pump again in hopes of helping his posturing. We aren’t seeing any bad side effects from the pump and I think his joints feel looser the more we raise it. The only down side is we may get to the point where he needs it refilled with medication every two weeks or so. But we could live with that.
I have seen the sutures on his head (where the pieces of his skull come together and will eventually fuse with age) swell at times and turn red like a goose egg. I’ve mentioned it to the doctors at least 3 different times and they keep assuring me it’s nothing. But I finally convinced them to do a CT scan on him before we go home just to ensure there’s no swelling in his brain that is pressing against his skull. We did that today and should get the results tomorrow.
Otherwise, it was a nice slow day. I did take Samuel down to the cafeteria while I ate dinner tonight and when we got back we watched the DVD that was made of him for the benefit dinner last month. He did sit and watch it between his posturing and he seemed interested in it. His eyes seem more and more alert each day and he is definitely more able to track and see things than in the past two months.
Thank you again to everyone who has done so much for us. As we get ready to head home, we know that it will just be the start of another chapter in this part of our lives. But as we close out this chapter, we know without a doubt that we could not have survived it without all of your prayers and support. We believe that God does so much of what he does through the hands of others. Thank you so much for being willing to be his hands in this life. We can never thank him or all of you enough. And although this is just the beginning of a long journey, it’s exciting to be moving ahead.
Thanks again everyone! Like I always say - keep up the prayers! They’re working!
Love,
Teresa, Tom, Samuel & Boys
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