September 2023 - 15 Appointments & It's Only Going to Get Crazier!

🗓️ September might have been busier than August! 🤣 We had 15 appointments between James and Mom in the month of September!

📦 We moved in and unpacked rather quickly with the help of Juju and Aunt Robin who came by a few times to help. 

👩🏻‍💻 Early Steps never called when they said they would so Mom went on FB and asked other Medical Moms about other potential out of pocket therapies because it didn't look like Early Steps was going to happen. It turns out a few employees including one of the decision makers of Early Steps was in one of those FB groups. Immediately they jumped into action getting us scheduled for a phone call and an in-person evaluation in downtown St Augustine.

🧮 Our early steps appointment went great! Everyone was super nice and willing to help. James scored an 18 out of 16 on cognitive. He knows his alphabet, can say the phonetics of almost all of the letters, knows his numbers, colors, shapes, animals, animal sounds, and the names of more instruments than most adults. We just need to work on the gross motor skills like standing, walking, feeding, and talking. Unfortunately Early Steps said they did not have enough therapists, so we will only be getting OT with PT and Speech consults once a month (if they find someone). James only gets Early Steps until about the 3rd week of December. Mom has received a ton of referrals! We have evaluations set up with several so far and are so glad that most of them take insurance. 

🎼 This month James also started music therapy. The teacher comes to the house once a week. She said that James is the most musically talented to toddler she's ever met! 🎶 Speaking of music, we took James to a few dinners in St Augustine that had live music. 🎵 Sometimes it was just a guy with a guitar, other times they had drums and violins, and the coolest place was a jazz band random people could come and jam with any instrument (saxophone🎷, double bass, violin 🎻, electric guitar 🎸, cello, drums 🥁, trumpet 🎺, etc). James was ecstatic to see these instruments in person! 🤩 When visiting at Juju's he goes straight for the instruments in the library like the maracas 🪇, piano 🎹, and glockenspiel. James was also entertained by Aunt Robin playing the flute. When she played the B scale for him tears came down his cheeks, he wiped his face, and then asked for more. 🥹 We also visited Aunt Taylor and Uncle Mark at their new home. Uncle Mark entertained James by playing the banjo. 🪕 James loved it!

He had a couple of firsts this month with going inside Costco 🏬 and Buc-ee's! James actually got to meet Buc-ee too 🐿️ but he was skeptical. 👀

👩🏼‍⚕️ James met his new pediatrician at the very beginning of the month. She wrote us several referrals for different therapies. Even though we were able to drop some specialists they are being replaced with therapists. We will stop seeing Endocrinology, Orthopedic, and Genetics but will be replacing them with Speech Therapy, Feeding Therapy and Occupational Therapy. 👂🏻 The pediatrician also diagnosed James with an ear infection, put him on an antibiotic (Cefdinir) 💊, and wanted to see him in 2 weeks. 📆 At the follow-up appointment the ear infection had cleared up. We noticed that everytime we checked his weight and height that he was gaining too much too fast. He was up to 28lbs and 33 inches. At the beginning of August he was only 24lbs. On average a 2 yr old should only gain about 4lbs a year. James gained 4lbs in only a 6 weeks! This new formula was putting on a lot of weight.

😫 This new G-tube formula, Kate Farms Peptide 1.5, was also causing lots of problems! After about 2 weeks of being on it James had horrible gas and daily diarrhea blowouts. The smell was awful and not normal. He was also throwing up in the mornings. 🤮 Mom researched in all of the different FB groups to find that these were common problems with this formula. Ugh, time to switch to something else! After a lot of reading Mom found that not all formulas are the same. There is a brand called Nourish (Liquid Hope is the adult version) that has all natural ingredients. Mom contacted the GI group in Tampa and let them know what was going on. James could not go any longer throwing up every morning and blowing out diapers. Unfortunately, they wouldn't discuss it with Mom and instead required us to schedule a telehealth appointment 2 weeks away. Mom was pretty upset and took it into her own hands to find the formula herself. We received enough samples to get started. We then had a telehealth appointment with the GI team. When Mom explained she already switched his formula, but just needed to know if she was giving the right amount. It is very confusing because even though a pouch is 400 calories it is only 341 grams. So it's a 1.17 ratio when calculating how much he needs and that doesn't account for water which is even harder to figure out. They apologized for not understanding my urgency to switch but wanted to let me know that we would need to switch DMEs again! 😫 Since he was gaining weight too quickly they also decreased the calories. Overall he will be receiving 800 daily. We are still trying to figure out how to move from continuous overnight feeds to bolus or gravity feeds during the day. Problem is that we don't want to keep him tethered to a feeding pump and want to allow him to independently move when he is awake.

🫁 Respiratory wise James is still requiring oxygen when he sleeps. He is at .5 liters because we do not have a pediatric flowmeter to wean him any less. We had been leaving his stoma open and leaving off the trach ties and gauze; however James breathes out of his neck a lot instead of solely using his nose and mouth. Mom then came across a post in the Trach Decannulated FB group and it was frightening to read how many kiddos did not have a successful stoma closure surgery. 🏥 Basically they became too reliant on breathing through the open stoma and once it was stitched up they required an endotracheal tube or to be retrached and put on a ventilator. After reading these stories Mom immediately starting putting trach ties back on James. Please pray for James that this goes well next week! 🙏🏻

🦷 James also had a dentist appointment that was kind of disappointing. We drove an hour away to Jacksonville (in a really rough part of town) to go to this specific clinic because they are partnered with outpatient surgery in case James needed to be sedated for cleaning. We were there for about 3 minutes. The dentist just said that we were doing a great job and to come back in 6 months. 🪥 We were expecting to be scheduled for a deep cleaning under sedation because his appointment back in February (in Tampa) had set these expectations. That was the whole point of driving an hour away to this specific office. 

🚗 One of the great things about moving to Saint Augustine is that we can stop by Juju's after a doctor's appointment. Between James and Mom almost all of our appointments are practically in Jacksonville. Juju is mastering the feeding pump and it's super helpful when Dad wants to go to one of Mom's ultrasounds. James loves visiting and exploring the house! 🍎🍏

🎉 At the end of the month, we went to Disney World & celebrated Juju's Birthday! Mom will make a separate post for Disney alone since we took a million photos and videos. 📸 It will take a while to go through them all! Coming up soon we are very excited for James surgery in Tampa on Oct 12th to get his trach stoma closed. 🏨 We are also very happy to be entering into the 3rd trimester with no signs of preeclampsia. 🤰🏻 

👋🏻 Lastly, as James get more and more stable we will most likely be stopping this blog with next month's update, post a successful surgery. Thereafter updates will be sporadic; they'll just be Facebook updates copied directly to the blog (to update those who don't have FB). As a reminder, if you haven't yet you can email James at JamesWestonAbramowitz@gmail.com. We love finding out who all reads the blog and are fans of James! One day he will read these too! ❤️