May 27, 2010

New Friends

Thanks to a college friend, Manny received new "Friends" today.  He loved them!  He even took his nap with Elmo today.  Thanks George! 

We went to the Doc today.  She said his lungs sounded GREAT!  We also discussed how to proceed with physical therapy for him (enough to help but not frustrate him), getting some more equipment to make him more comfortable, setting up the swallow test to see if he is losing any more skills (which increases the risk of aspiration), and even arranging to get us a handicap sticker. 
A quick story about the handicap sticker ... I have a 15 passenger van.  It doesn't always fit in regular parking spots so I usually park waaaay out in the back 40 so it doesn't get in any one's way.  And also, it lessens the chance that someone will pull beside it.  If someone DOES pull beside it, I cannot open the door enough to get his car seat in/out.  And if someone pulls too close to the back, I cannot get his stroller in/out.  (And this happens all the time ... very frustrating.)  So today, the ONLY parking spot that would fit the van at the doctor's office was one in the next parking lot over.  I loaded him and his stuff into the stroller.  He was asleep so he was hooked to oxygen.  I'm pulling the oxygen with one hand and pushing the stoller with the other.  I'm dragging all this through the dirt, the grass to get to the office.  I was exhausted by the time I got there (not to mention the contortions I had to do to get the door open).  So I thought to ask the doc, "At what point do you think he qualifies for a handicap sticker?"  and she said, "TODAY!"  So I will fill it out tomorrow and go from there.  Hopefully no more incidents like this any more.  (It's the little things!)

Regarding the GI doc ... he wanted Manny's tube to be changed to a different type of tube a few weeks ago but he got sick.  I called today to get the appointment set for the surgery and now there's trouble with the adoption issue.  They have some weird policy (that the other docs don't have) and are making us go before the Judge to get a thing signed.  I was so upset that I called the social worker to see if she would call the doc office directly.  It's absurd what they're asking so ... hopefully she can straighten it all out.  In the meantime, his tube is broken and we're having to make due with what we have.  Trying to hang on until the surgery ... lest it become and emergency operation. 

Many of you have asked about how Manny is doing.  Quite honestly, we're seeing decline in his skills, his alertness, etc.  Doc said I might need to increase his oxygen levels ... to include awake times.  My heart is heavy every time I see him struggle for a breath. 

We're still very much praying for the miracle of complete healing.  At this point, we haven't seen it yet.  So we are holding on to hope.  We're getting strength from all of you and knowing you're all praying too.  We can feel it.  Thanks!

We are so very thankful to all our friends!

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