Wednesday, November 13, 2013

Our ROHHAD friends


Mason - who also has ROHHAD - has been Haven's friend since 2008.  He was admitted to the hospital about a week ago with Pneumonia.  We want to thank everyone for their prayers and thoughts of Mason.


He was allowed to come home today.  We're so very excited and happy to have him home.  Love you Mason!


Miss Reagann has been in the hospital for a long time.  She was able to go home from her treatment at Hopkins only to land in the hospital with a torn 

We were hoping she would be extubated yesterday but was not able to.  The doctors are hopeful that she will be extubated today.  Currently she is strapped down to the bed so she doesn't pull the tube out. They are going to take the tube half way out and look to see if she is well enough.  She has been taking medicines to repair the tear and we're happy she hasn't had to have surgery.    Please send her some happy thoughts!



And our sweet friends - Sophia and family - got to meet up with LJ before he headed in to surgery to have his trach placed.  He was put in to a medically induced coma.  He is still in the hospital and we wait for him to come home.  Get well and home soon LJ!!!!


And my broken heart for this baby.  I'm so happy we got to know Stevie and hang out with her.  What an amazing little girl.  She made me giggle and she was so soft spoken and beautiful.  We will miss Stevie but we know she is playing with her fellow ROHHAD Angels  Love you Stevie.


I realized the other night that (from those that I know personally) we have had 8 ROHHAD babies gain their wings since Haven was diagnosed and we became active in the world of ROHHAD in late 2007. Very very sad.  We miss all of you.


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