The Journey of James Weston

Saturday, December 18th, 2021 James is obsessed with grabbing his feet and touching his toes. In the evening, James sat at the kitchen table with Mom and Dad for dinner. We are trying to get him out of his bed or sitting up whenever he is not sleeping or napping. It's not only important for his development but for his core strength and to improve his flat spot on the back of his head. At our next pediatrician appointment we will be inquiring about a helmet. P.S. James' 1st Birthday is coming up! Wouldn't it be fun for James to read an email from you when he is older? What a treasure! His email is JamesWestonAbramowitz@gmail.com. How awesome to get his reply back in like 10 years...

Friday, December 17th, 2021 This cover photo is of James waking up after a nap. He always wakes up smiling! 😁 😊 We tried a new position with the boppy to support James sitting up. His move is to typically squirm his way flat onto the bed. Instead we had him wear it like a pool floaty. We had Physical Therapy in the morning. This was Dad's first time working with the Physical Therapist and James. During this time, Mom had an interview over the phone to try and get approved for assistance with GI costs. Well if you make over $45K for the total household you cannot get any help. We did not get approved. Next step will be to speak with the Doctor about insurance codes. Fun! We did get some good news regarding insurance coverage, finally! Yesterday our RT stopped by to do her monthly vent check and Mom reminded her of all of the things that we are still waiting for approval on. She said she would try and see what information she could get and help nudge things along since she works fo...

Thursday, December 16th, 2021 Continuing to do 1 hour of eye patching a day. It's a struggle but we get it done. We pull out all the stops as far as distractions! Mom managed to get through another day with no nursing, handling both day and night shifts. We found out from being in the hospital that it's only possible to do about 6 days of that until the body begs for more sleep. It's also a dangerous situation when someone always need to have their eyes on James 24/7. James is really mastering his bouncer. The bigger he gets, the easier it is for him to touch the ground. He loves to grab and hit anything near him. So we'll have to be careful with our Chihuahua Tommy. P.S. James' 1st Birthday is coming up! Wouldn't it be fun for James to read an email from you when he is older? What a treasure! His email is JamesWestonAbramowitz@gmail.com. How awesome to get his reply back in like 10 years...

Wednesday, December 15th, 2021 No nurse for the rest of the week since our M, W, F nurse is on vacation. Dad and Mom made the trip with James to the hospital for his Speech Therapy PO Evaluation.  Speech-language pathologists evaluate a patient's communication, thinking processes, and swallowing abilities. Therapy provides patients with skills to improve their attention, memory, reasoning, and understanding of language and speaking, as well as helps patients eat and swallow safely. While at the hospital, we ran into one of James' Occupational Therapists. He has grown some in the last few months! During our appointment the Speech Therapist tested James' ability to swallow by allowing him to take some water from a spoon. This was his first time using a spoon and he loved it. Mom does do oral care with James at home which is using a sponge qtip dipped in sterile water. It was always really hard to tell whether or not he was swallowing. The next step would be a swallow study. H...

Tuesday, December 14th, 2021 Today was the first time Juju was able to see what home health nursing is like. Our Tuesday nurse is great with James, always giving him attention and helping with PT. We deflated his cuff for an hour so that Juju could hear him make some noise but James did not want to talk. He still held great tidal volumes the whole time! James has been belly laughing so hard sometimes pausing the ventilator. Even though we can't hear him you can tell by the photos! Mom tried to get his liquid Calcium Carbonate refilled but if course there was an issue. So this is an OTC med, that you can't buy over the counter. 🤷🏻‍♀️ So insurance won't cover it, in fact they're asking for much higher price then the over the counter price. Our local Publix is so good, much better than CVS in Mom's opinion. They immediately saw that we were going to get overcharged and decided to give us the prescription for the OTC cost instead which was $12 vs $90. They are going t...

Monday, December 13th, 2021 James loved playing peek-a-boo with Juju. Check out the video below! He is really good with covering himself up and taking off the blanket as well. James gets so excited he has to be reminded to keep breathing.  We enjoyed a home made chicken pot pie 🥧 from Cathy and watched Die Hard on the wall projector 📽️. Our conclusion and unpopular opinion is that it should not be considered as a Christmas movie.  Always laughing and smiling! Trying out his new kicks!