mamamamam daaa baaaa

No - I did not just have a stroke~ Porter is starting to make more sounds that sound like real "words" or actual letters!!!  He is really trying so hard to communicate with his voice and it is so cute.  He cracks himself up a lot of the time and REALLY enjoys his play time with some of the other neighbor babies.  They are super cute together.  

Porter had a follow up cardiology appointment today and his heart is looking GREAT!!!!!!  The cardiologist decided that this would be a good time to come off and decrease some of his medications.  He questioned where we were with Porter's vent management/wean and we explained that we have transferred care to a new pulmonologist in hopes of making more affective progress with his vent wean/management.  We have been back and forth with patient relations at UNC and even though the drs who were involved with Porter's modified sleep study on July 9th confirmed with me that what was supposed to happen didn't, when questioned by patient relations their story changed. So disappointing and EXTREMELY frustrating!!!  

It's looking like Porter will be off of his steriod by the end of September and will be getting another cath in November.  Until then~ grow, develop and grow!!!!!!

PT, OT and Speech are very happy with his progress.   I think PT would like to see him putting a little more weight through his arms and legs so we are working on that. 

All in all- Porter is doing well and making slow and steady progress.

Comments

  • marygandy

    sometimes i really wonder what they have been trying to tell us with words like "mamamamam daaa baaaa" i really wish, we could understand these.

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