Klara Danielle..................................

Blog: (a contraction of the term "web log")[1] is a type of website, usually maintained by an individual with regular entries of commentary, descriptions of events, or other material such as graphics or video. Entries are commonly displayed in reverse-chronological order. "Blog" can also be used as a verb, meaning to maintain or add content to a blog.

I have to once again apologize for not keeping you up to date, but the days just started to seem routine (lets use routine LOOSELY).  Klara was having a few "episodes" every day but nothing she didnt bounce back from.  Her feeding was hit or miss, so they pushed an ND tube vs. her NG tube and things seemed ok. (i apologize for the clinical terms).  I promised to deliver news to everyone (good or bad) and i was waiting for some news.  For a while I was under the inpression that it was going to be GOOD news that we were talking with the docs about taking her home assuming we got her O2 and feeding in good order.  Then...

Lets just go back to yesterday.  At ~4pm 2/22 we had a meeting with all her docs and her neuro specialist.  We found out we were still w/o primary diagnosis but they were starting to eliminate some diags. Taking her home was at least 3 weeks away due to her current instability (and we thought this was bad when we left)

So we went home had our usual crazy fun w/ Lily J.  Woke up the next day and did our routine.  Lily's friends kate and megan  came down to play for the day and off we went.  Pulled into CHOP's parking garage ~9:45.  Got to the NICU entrance at ~10.  We were told we cannot go back and we were redirected to a conference room.(can this ever be good????)  Our Dr. came in and had some BAD NEWS.  We were told

     - "Klara had an episode that she could not recover from herself.  We had to stimulate her and Bag her.  She stopped breathing and now we are concerned about her respiration.  We are currently intebating her."

In layman's terms, she is now on mechanical ventilation.  They are concerned with her being able to breath for herself. ............  Im sure you just said WHY????

Here are options as to what/why..

      -  Whatever she has is progressive:  meaning if she has a muscular myopathy is now weakening her breathing muscles (diaphram/lungs) so much so she cannot sustain her own breathing.  I choose not to mention the prognosis if this was the case

     -   She has a blood infeciton that she recently caught in the hospital:  they have tested her for sepsis.  We hope this is what caused the issue w/ her breating.  At least with this there is hope she can recover her respiration strength.  Does this mean she is cured...NO.  It means she can hopefully one day breath on her own.  And right now that would be a victory to us.

Where we go now..is up to Klara...She is not giving up so we can't either.  I know everyone has been sending her love and prayers, but she needs a little bit more...more now than ever. 

I apologize for the grimm news but this is our way to communicate with you.  I dont want to end on bad news...so i wont...

Lily once agan terrorized the NICU this past sunday.  She got to hold Klara for the first time and LOVED IT.  We couldnt get her out of her hands.  Additionally we had our first family portrait (minus our dog carmen - the NICU wouldnt let her in). 

Please continue the prayers and support..we would be LOST w/o friends and family.