8/16/16

One more week!

We are coming upon the tail end of the summer, in fact, we only have one week left to enjoy!  I met with Carla's school yesterday to try to iron out an IEP.  I feel pretty good about how receptive the school was and will grit my teeth and hope for the best once again.  They are putting a hand sanitizer dispenser by the door in her room, so that makes me happy.

On August 4th, Carla and I headed back to Seattle.  She had appointments on Friday, the 5th (with pulmonary); Monday the 8th with her heart docs; Tuesday for speech to watch her eat; and Wednesday the 10th for a swallow study.  The good news is that the swallow study showed no signs of aspirating, which doesn't surprise me but it was good to rule out. The docs are trying to figure out why she is having such a difficult time getting rid of the Pseudomonas bacteria, so ruling out aspirating is a good step. On Friday, the lung doc ordered a CT Scan of Carla's lungs to see what kind of damage we are dealing with. It actually turned out better than he had hoped, so that was good news. He said that with her having had plastic bronchitis, a paralyzed vocal chord as well as being on immunosuppression drugs, that she is kind of hit with a triple whammy that is making it difficult to get rid of the lung issues. We are really amping up her treatment regimen, so I am hoping that that will help. As far as her heart goes, everything looks the stable. We will do a follow up in Missoula on September 20th and then see Seattle in November and then back again to Seattle for biopsy in January.  I'm feeling like these trips are getting to be a little bit much, but of course understand that it is important.

School starts on the 23rd, and I am super nervous and not looking forward to waking Carla up at the crack of dawn so that we have time to give her a breathing treatment before school.  But, once again, we will just do what we have to do. I'm feeling glad to have her on an inhaled antibiotic the first month of school though, because it makes me hopeful she won't get pneumonia this upcoming month... here's to hoping anyway!

Thank you for the continued prayers! Sorry for not updating very often... I've been running around like a chicken with my head off lately!

Love, Jen

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