Saturday, May 16, 2015

8 months Trach Free

Still seems like yesterday we were pinching ourselves seeing Preston's naked neck. I can't believe its been 8 months. The boys 1st year of Preschool is coming to an end this week. Preston is TALKING like crazy! He is saying several new words DAILY! We head back to Cincy on Memorial Day for Preston's follow up scope to see how his airway looks. Unfortunately, this winter was not fun. P had a week long stay in the ICU and another night inpatient a month later for several reasons. He is now on a new med plan that seems to be doing wonders for him thanks to his NEW Dr at KU who who is now the boys pediatrician and specializes in asthma/cf/other breathing complications. He has been life changing for us and we believe he will help keep P out of the hospital to catch any sickies SUPER fast with meds asap and has really taught us specific signs/symptons to be on the lookout when Preston starts to get sick. We were so used to how P sounded WITH a trach and now we have learned how he sounds WITHOUT it and its been a learning curve we didn't anticipate. Things are looking up which is great! I am savoring every minute of this age yet its been the most challenging in some ways. It has also been the easiest in other ways. I imagine this will be the case with each age! Regardless, I am reminding myself this is going all too fast and we plan to have a fun summer with lots of activities before school starts back up.

Please pray for us if you don't mind. Safe travels, easy stay at RMH, and a successful O.R. visit for P would be appreciated. We plan to contact Dr Andrews (P's plastic surgeon) while traveling home to get him on the surgery schedule ASAP for his neck revision so he can swim safely this summer! Fingers crossed this can happen very soon! I am ready for every step of this 'trach journey' to get behind us and have 100% closure.

Here is picture of the boys before our fun date recently with our friends the McNeils at Cosmic Jump and Jason's Deli for dinner. They are growing so fast and are officially ready for summer with their shorter haircuts!

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