Justin’s ONH Blog

7 days to go!!

March 1st, 2008

(click on picture to enlarge)

Wow.. I remember thinking back to when we had 7 days to go to leave for China.. now I am thinking of coming HOME!!!!

Although we are tired of being here and more than ready to be back home, I am thankful we had this time to spend together as a family and to help our son.  I wouldn’t trade anything for this experience – no matter how horrible the food, or lack of privacy, or sore backs from the hard beds.  We would have gone anywhere in the world to have this done for Justin.  We never saw this as a sacrifice until people started pointing it out to us.  Although other areas of our life have been put on hold, or not made a priority, we never really even thought about that.  I am very anxious to get home and spend some quality time with my baby before more of life’s demands get in the way.  Now that Spring is almost here, I am looking forward to long walks in the neighborhood, sitting outside working on my flower beds with Justin playing in the grass, cookouts on our deck, walks at Riverview Park, and maybe even a weekend at the Jersey Shore with Justin’s aunts, uncles, and grandparents.  Thinking of these things are helping me look past the mere 7 days of boredom we have left.

His final treatment is Monday and we got it changed to an IV.  Physical Therapy has been cancelled, by us.  Justin was not tolerating it well at all and it made him so upset.  He is going through so much already, we didn’t see the need to push him to crawl or stand.  It is more important that he is happy and healthy right now.  We think he has a headache since whenever we pick him up he pushes away and seems happy laying down.  That is another reason I don’t want the other spinal injection - I don’t want him having a headache for our long flight home.  He responded so well to the first IV treatment and he is so little that I don’t want him sedated again so soon.

I am looking forward to feeding Justin in my arms again.  There is no rocking chair here and the tiny chair in our room isn’t good for feeding.  I miss holding him and rocking him.  I wish they had a rocking chair!

Our ABC news story aired.  Here is the link to the video.  Overall it was a good story, although some of the details about this treatment are left out.  There are always skeptics to any new or unconventional treatment (think of the first chemotherapy treatment – I’m sure it was not widely accepted), and sure this treatment isn’t a 100% guarantee, but nothing is.  If the stem cells are helping Justin’s body repair itself and give him a better quality of life, then this trip was worth it.  What more could we ever ask for?

http://abclocal.go.com/wpvi/story?section=news/health&id=5979698

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