Re: Can you believe it - another MJ Update

[Guest guest]

My thoughts are with you both.  had a perferation in his colon too. 

I've also heard of one other man with SMA that had the problem.  I wonder if

there is any connection?  sometimes has fliar ups, but hasnt had a

perferation in a long time.

Our prayers are with you both!

Can you believe it - another MJ Update

So, the dorky doctor made his appearance this afternoon and finally " revealed "

his plan.  For now, if things go status quo all weekend, on Tuesday, we will

flush her jtube, check the placement and if that is okay, MJ will start being

fed via her jtube.  After we got back from IR, MJ got her regular IV line

removed and a bath.  Her right hand, where the IV was is all stiff so we have

it wrapped with heat packs and yellow gauze (looks like she got a cast).  MJ's

heart rate is still down and even hit 97!  We are so happy and excited that the

perforation appears to be healing!  Sorry I am overwhelming you with MJ

updates, but we had to share the news.  Keep on praying as they are certainly

working!!!

MJ Purk

SMA type I+, 19 years old

“Our deepest fear is not that we are inadequate. Our deepest fear is that we

are powerful beyond measure. It is our light, not our darkness that most

frightens us. We ask ourselves, Who am I to be brilliant, gorgeous, talented,

fabulous? Actually, who are you not to be?†~ nne on

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