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Welcome to Jeremiah's Web Page. It has been provided to keep people updated about Jeremiah our seven year old son.
On February 21, 2003 Jeremiah was diagnosed with Adrenoleukodystrophy. Our only option was a cord blood stem cell transplant. We were told that the Duke Medical Center was the place to be. Follow us through our journey to what we hope is Jeremiah's recovery.
Journal
Saturday, March 28, 2009 5:19 PM CDT I know it has been a verrrrrrrrrry long time since I have updated Jeremiah's web site. There just hasn't been anything different to tell.
Last September Jeremiah had to have the harrington rod procedure to fix his back. He had scoliosis. We didn't really understand how bad it was until we saw the before and after xrays. It happened so fast. Apparently it is common even in normal children especially boys who reach puberty to have issues with their backs.
It was a seven hour surgery, and believe me it was one of the hardest decisions I had to make. The thought of not having the surgery and losing Jeremiah to a slow and painful death due to his back collapsing was something I could not do. After everything he has been through with no real improvement as far as a quality of life I questioned whether I should do it. I felt I was led to make the decision to have it done. I did not seek it out it just came to me through other sources.
I also felt that if Jeremiah wanted to be done with all of this, I was going to give him that chance. Having a seven hour envasive surgery was certainly going to be hard on him.
I was ready to let him go, and would rather lose him trying to give him relief from his disfigured back, than watch him die in this way.
But as I should have learned over the last six years, Jeremiah has always had other ideas. He made it through the surgery with flying colors. After a couple of very uncomfortable months he has finished his six months of restrictions in therapies etc. He healed wonderfully and I am looking back once again at the last six years and wondering how we made it this far.
Jeremiah's tests still show his disease is gone. In fact, last year at his annual checkup in Iowa City they told us there wasn't any need for us to come back for two years. As far as the transplant, Jeremiah still continues to be doing good.
I still pray for the stem cells to be continuing to do some repair, and that we will get our miracle.
We will be returning to our Neurofeedback sessions next Monday. When we stopped them last year because of the surgery, Jeremiah was starting to smile more and seem to respond more to everyone. Hopefully we can get that back.
We have had a lot of issues with colds this year. We think Jeremiah may have developed some allergies. We had one trip to the hospital with a mild case of pnuemonia. Jeremiah stayed the night and was able to come home the next day. We now have a nebulizer machine to help with any breathing issues that may come up because of the frequent episodes with conjestion.
Other than that Jeremiah is still growing. He grew at least three inches just from the surgery. His weight has stablized around one hundred pounds.
He is now going everyother week to dads. Giving Mom a week off now. Experiencing what it is like to have somewhat of a normal life everyother week is harder than I thought it would be. I had gotten so used to the way things were that I didn't realize how bad it was. Adjusting to having Jeremiah come home and get back into the caretaking mode again is hard. Sometimes wishing that this was all just some bad dream that was going to end soon.
I love Jeremiah more than life itself, and would probably have done nothing different. Life sure can be a challenge, a journey that we are not prepared for. I have learned to take nothing for granted and try to find the blessings in all I do. I have met and have wonderful people in our life that might not be there if not for our journey. One of my biggest hopes is that another child somewhere will benefit from our experience. I have started working on a book. Who knows maybe I could be on Oprah some day!
I am not sure that anyone is still checking on Jeremiah but for those who do, Thank you!!
God bless you all!
Peggy & Jeremiah
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