2012-04-11 Hi everyone,
Today was our 6 month mile maker!So, I am sure you guys want to know, where is Sean now (I mean besides taller and heavier)….
His last MRI was at 3 months (late December) and it came out as expected (clear) and we will go for another one in June.
He accomplished all his occupational therapy goals much faster than anticipated and we were able to finish OT this past month.He is back to creating amazing origami and his “terrible” art is better than anything I could ever dream of creating.Writing is still a chore….but it wasn’t his strong suit to begin with!:)
He still has about 3 months of physical therapy but he is conquering all those goals ahead of schedule as well. His balance is greatly improved and he can even dance with his CFT drama club!The only time we have to really worry is when he gets too fatigued, then he is a little wobbly.
Speech is our tallest hurdle but even that is hugely improved.He will probably have another 6 months or so before it is 100%.Therapy should only last another session or two and then it will be up to him.Funny, never thought I would encourage my kid to talk more!
School started back for Sean in mid-January and he is doing much better than expected (guess you have gotten used to hearing that by now). At first, retaining and
comprehending were difficult issues and he relied heavily on audio and mp3 versions of his curriculums; but now he is reading on his own and able to absorb almost as much as before the surgery. We have a lot of missed time to makeup but we are going to take it one day at a time.
As far as the adrenal insufficiency, we are facing that head-on just like everything else. He took his last “planned” steroid on Monday.Yea!! Today we got a message from the doctor regarding his blood test last week and she said his numbers were better. Then she added “they are not where I would have expected them but they are better.” ??? Not sure what that meant so I left a message myself requesting more details.That might explain why he still has issues with mental and physical endurance (his only real problem still bothering
him).We will have an all-day blood test at the end of the month that will test once and for all if his body is working
on its own.
Everything is getting back into place and we can only look back in amazement at how blessed we are. Today (along with all the letters and notes of love from you guys) I read all the emails I sent out during Sean’s ordeal and I cannot believe what this kid has gone through. Sean went through more anguish and pain than I could have ever imagined during those two weeks in the hospital. There were nights with the meningitis that I was beside myself begging for a way to comfort him…but yet in the morning the first thing out of his mouth (after “order my breakfast”) was “how are you?”!!!He showed real courage and although he has pretty much forgotten the pain, I hope he never forgets the journey.
I close with a personal note to Sean: Sean, your father and I are so very, very proud of you! Anyone with weaker faith would have cowered at the hurdles you had to overcome or
would have questioned why this was happening to them. But not you, you never doubted God, your faith or yourself. Instead, during this time of pain and suffering, your confidence in His power and your own abilities grew stronger. You and I talk often about how God is going to use you to touch others but it is quite clear He already has ….starting with me. You’re our hero!
Thank you again for all your prayers and continued care!
Ena