Dear John Paul,
It's about 1:45 in the morning on Saturday and I am beginning my day with you. You have had a very busy couple of days...Thursday, you had you first of many massages! I learned how to massage your face and legs and the therapist will come back to teach me the rest of you. You really seemed to like it and I think it will really help with some of your tighter areas.
Friday, you had an ENT (Ear, Nose Throat) appointment in order to check how your trach is doing and assess if you need a new size. The ladies at the front desk were taking their time getting you a room so that we could give you your saline neb to keep your airway moist and you ended up desatting to 71 in the waiting room....a room became available very quickly after that! The doctors said your airway looked great and that there was no need to change your trach size at this point.
After the appointment, since it was a beautiful May day, we decided to stop by the Shrine to the Immaculate Conception and do a pilgrimage to the beautiful statue of our Lady in the garden outside...you were enjoying your lunch while mom and dad prayed the rosary...unfortunately we had to cut things short and get on the road because your saturations started fluctuating a little and we were nervous that you were drying out too much...sure enough we ended up pulling over on North Capital Street to bag and suction you as you desatted to 87.
Don't worry, we aren't going to give up on taking you on adventures....we just have to get our systems set a little better...I think with a power inverter, we'll be able to neb in saline anywhere...and we may just do shorter trips and not combine adventures and doctors visits together.
When we got home, you took a nap and then around 5 pm, you and I got to snuggle sitting on the bench on the patio outside while the kids played in the yard. Finally you got to have a bath with the help of your uncle Joey who stopped by for a visit and then uncle Bobby helped dad with trach care so that I was able to go to bed early so that I could get up and give your dad a break.
All in all, a very good day. Your brothers and sister have really been enjoying doing more and more with you and practicing doing the things they aren't allowed to do yet on their baby doll. I added some pictures from the week to your slideshow.
Tomorrow is another busy day with visits from the Carneys, aunt Suzanne (who is awesome at doing pretty much all of your care and can give momma a break), and the Sousa's!
Love you so,