The birthday was incredible! We did a jungle theme with lots of balloons and a number one cake! We put Paul in his walker and he tooted around the party, visiting with everyone. He quickly became aware that this was all for him and just loved it. We raised $560 for Vanderbilt Children’s Hospital in honor of Paul’s clinic nurse, Karen. She has a really cool idea on how to use the money and I am currently working with the development office to see if we can make that happen. Vanderbilt families all know the magnificent person Karen is and we are so blessed to have her caring for Paul with us. Paul got lots of toys, too! A crawl ball, xylophone, ornament, books, outfits, puzzles, a cool caterpillar and stuffed pug were included in the gift items. Paul even got an actual key board from his Mom Mom! He is making music and sounds and almost crawling!
We went to cardiac clinic at Vanderbilt on Monday and we also had a swallow study. The swallow study was an epic failure- he would not drink so we’ll try again in a few months. The cardiology appointment was great and Dr. Parra seemed encouraged and excited about Paul’s progress. He also graciously agreed to work with Dr. Rychik at CHOP. These two guys will figure out how to best care for Paul together. They are two of the nation’s best and we are so lucky to have both eyes on Paul. The MRI will happen at CHOP in January and we upped Paul’s enalapril to 1mg/kg- a good dose that will hopefully help regurgitation. I also had the opportunity to speak with the legendary Dr. Pedro del Nido from Boston Children’s via phone last Friday. He stands firm in his concern about the TR and was happy we are getting the MRI to determine what is actually going on. What a surreal moment to be on the phone with this man! He was generous and kind and funny- I still can’t believe he took 30 minutes to talk to me, likely this is why he is such a respected professional.
We also felt completely wrapped up in love with the speech and feeding team at VCH. Kayla (nutritionist) and Denise (hospital SALT) met with us in clinic and our sweet outpatient speech therapist (Lori) was also present for the swallow study. They started Paul on a new feeding plan and we will be doing weekly check ins with Kayla. In a few months we will start the tube weaning process but he showed us on Monday when he refused to drink that he’s not quite ready. His weight is down a little but we hope with more calories during the day that will change.
The day after Paul’s birthday he played baby Jesus in the church pageant. This was also the one year anniversary of his baptism. What a wonderful weekend!