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Trust Fund Donation Information:

Joshua Garman Special Needs Trust

c/o J. Robert Steelman

1117 Lambert Drive

Westampton, NJ 08060

http://www.joshuagarman.blogspot.com/

Journal

Thursday, July 2, 2009 11:46 AM, CDT


Well, we finally got a call back from our neuro, even without having to call him.  I was just about floored that he called us!  Joshua's mouth swab came back deficient in Complex I just as his biopsy did.  It was not quite as deficient but that does not surprise me.  This swab gave skin cells and depending on where you are more deficient will depend on the area and how affected it is.  Knowing that it did come back certainly confirms it a second time and they do want to do it once again just for thier own uses. 

We go to see pulmonology next wednesday and will take along everyone.  As it stands we will go in early and have lunch there after they all have their swabs done.  We will have to go to neurology and ask for the doc and I was even given his extension should the front desk not know how to get a hold of him.  Hopefully we will get some answers either way with the other boys.  Joshua's will be a repeat to confirm their initial swab.  I did also make an appointment over with Hematology and for Josh's chest x ray today.  Hugh will have to take him on Monday for the xray since I cannot go in due to being pregnant.

Next week is a crazy week of doctors appointments for everyone.  I'm hoping for some good appointments.  Our immunology appointment got pushed back a week and I am kind of greatful for that.  The first half of next week will be appointment city and then hopefully it calms down for a while.  That will give us a chance to breath and also finish getting ready for Joshua's big bash!!! We are all very excited and it is all coming along a little bit at a time.  Hopefully by the end of this weekend our part of it all will be done.  The week of the 13th everything else will be going in other then the patio and ground leveling.  Those two will have to wait until next year.  We cannot afford to do them at this point in time.

The last few days the boys have spent time in a little pool that my brother bought for them.  It is slightly bigger then 2 foot tall and is about 12 ft around.  What a difference it has made for them.  They have never been able to last outdoors more then an hour at most and by the time they came in they were wiped out.  With the pool doing most of the work for them, they can stay out longer and just have loved it!  It is not to big and not to small for them.  We did get them some life vests and they  have been good about putting them on before they go outside. 
This weekend we are having a small picnic here.  Since we have the pool up and lots of stuff now for them to play on, we opted to have it here.  Everyone should have a good time and it is just the beginning of making lots of memories with our new yard.  We cannot wait and look forward to doing it. 

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E-MAIL AUTHOR

garman_family@yahoo.com

HOSPITAL INFORMATION

St. Christopher's Hospital for Children, PA
Erie Ave at Front street
Philadelphia, PA 19134