The Journey of James Weston

Tuesday, November 23rd, 2021 James played on his piano while Mom held him sitting up. He loved it! Much better than kicking at the piano while lying down. James heard his first Christmas and Hanukkah songs. Mom styled James' hair because it's getting so long (in the front). Some he was not a fan of. 😂 Trying to get compounding prescriptions filled... Mom went to the local Publix pharmacy early in the morning. She let the pharmacist know the situation and that they were supposed to call the Publix pharmacy located inside the hospital for direction. They were very nice but very confused as to why this is being handled like this. After a bunch of back and forth conversations between Mom, the local Publix pharmacist, and the pharmacist at the hospital they came to resolution. The local Publix pharmacist would enter in the prescription information and put the order on "pause". 🤷🏻‍♀️ The hospital Publix pharmacy would contact the Orlando compounding pharmacy to place an ...

Monday, November 22nd, 2021 Our first appointment was at 9am but was an hour away, so we started packing up at 7:30am! There are only two pediatric ophthalmologists in the area both are about an hour away. James needs to get his eyes checked out due to his strabismus. For this appointment, Mom, Dad, and the nurse went along. Unfortunately when we arrived it was pouring right outside. This was the first time we have been in the situation and James got pretty soaked even with a blanket lying over him. There is no handicap parking so we tried to park in a spot and that was The consensus after our appointment was that James will need to wear an eye patch. The doctor could not determine which eye was leading. The result is James will wear an eye patch for 1 hour a day and switch eyes everyday for 6 weeks. Then we will come back for a follow-up. Mom ordered James both glasses that have a cover and sticky Band-Aids for the eye. We will need to distract him for the hour so he does not pull it ...

Sunday, November 21st, 2021 James has a new trick and there is a GIF you can check out below. He switches his hands back and forth. May not seem like a big deal but every new thing is a big deal to us! What is nice about taking care of James not only as his parent but his nurse you notice every little new thing everyday! James is sportin' a custom onesie handcrafted by one of Dad's sales reps. We need to put James in the same outfit and in the high chair swearing this one.  In the evening Mom noticed that the full moon was shining a moonbeam on James' crib.  Moon Beam lights up his crib. Zoomed in on phone. P.S. If you read the blog and are supporting James through his journey we would love you to participate in our video montage of everyone singing his lullaby. Please see the James Weston lullaby post for more details. ❤️

Saturday, November 20th, 2021 Today is Aunt Robin's Birthday! 🎂🥳🍰🎁🎈🎉 The family got on the road to Jax around noon. James got his snuggles in on a lazy Saturday. The boys dressed up in their matching bandanas. Today in the mail we received some awesome custom onesies from "Aunt" Megan. Look out for those in the days to come! We let the staffing agency know that we did not want to continue with the nurse we had on Tuesday. She was a danger to James and more work for Mom! They completely understood. So that is 3 nurses in 2.5 months that we've had to let go! Now we are down to one and she is good. She's currently working M,W, F but there is a possiblity she may be picking up a few hours on Tu and Th which would be ideal. You may be thinking, well you don't have anyone to back up if she calls out! That is correct! Instead of having the staff agency send us some random person for one day that Mom would spend the whole day training it is easier just to handle...