July 2023 - Feeding Freedom 🇺🇸 & Big Boy Bed! 🛌🏻

Wrapping up July!

So we ended up checking out the house in St. Augustine and a few days later got word that our application was accepted! We will be moving to St. Augustine Shores at the end of August! Below was our Facebook announcement:

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Guess what?! We are moving! Only 4 weeks left in Tampa! Right now we are super busy squeezing in all of James' doctors appointments, purging items, and packing. Then we will just need to transfer medical records to 8 new specialists across the state! 😅 James and his baby sister will be so happy to have more room in their new house! 🏡

James did so good in his checkup yesterday! Gaining weight and height! We'll be sad to leave some of these doctors but so excited to be closer to family! ❤️

*On a side note, we are so sorry we have not been able to do all the playdates we said we were going to do and meetups with friends. As you can understand it has been pretty non-stop since James has been born (we're not in survival mode anymore though!).. If you want to get together over the next few weeks, just shoot me a message. We've actually been making pretty good progress with preparing for the packers and movers. 😊

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🍽️ James has been making a ton of progress with feedings. He has been switched over to only feeding in the G from the J since the beginning of June. No Farrell bag just directly connected to the stomach. This has been HUGE! The cyproheptadine has really helped allow his stomach to expand. On top of this great news, James has also tolerated his new formula. We switched from Pediatric Compleat 1.0 calorie to Kate Farms 1.5 calorie. What does this mean? Since this is a higher calorie formula James can be fed for less hours on a continuous feed. His new schedule allows him to be on a continuous 14 hour feed with 10 hours disconnected from the feeding pump. Prior to that he was connected for 20 hours. 

New Feeding Schedule!

• 11pm-7am (on ice) - Rate of 47ml - Continuous
• 7am-11am - Rate of 47ml - Continuous
• 11am, 12pm, 1pm, 2pm, 3pm, 4pm (60ml of water - Bolus) - (these times are flexible, he just needs atleast 360ml daily)
• 9am-11pm - Rate of 47ml - Continuous 

So if you look at that schedule you'll see that from roughly 11am until 9pm James is FREE of a feeding pump and untethered!!! He does need to get water which we bolus him. This means that we connect a 60cc syringe directly to his G-tube extension and pour in 60 mls of water. Typically it takes about 5-15 minutes. We need to do this 6x during the day. We started with a 30ml bolus and then giving him a few minutes and then adding another 30 but now he is tolerating it just fine! We couldn't be more excited, because James loves to explore! He is also eating a lot more by mouth. We try to have at least 2 meals at the table where James is getting 100 calories. His favorites are Greek yogurt, cottage cheese, oatmeal, toddler fruit pouches, and eating whole bananas! James has been knocking on the refrigerator and telling us he wants to eat. Then he scoots over to the table and requests his bib! 😂

🍿 James saw a new Disney movie with Dad at the movie theater. Mom dropped them off and then headed to Home Depot to buy moving supplies. We also took James to Jurassic Quest where James met his first real dinosaur! 🦖🦕 James mastered his new Lovevery kit this month within a few hours. We think it's time to skip the next play kit and get him more advanced toys. 🧮 He loves to be challenged! 🤓 James is so smart there is a photo below showing James turning off his pulse ox machine because the alarm was going off. 🚨 Why? Because he removed the pulse ox from his foot! 😮 When Mom asked him from across the room if he had taken it off, he said "No". 😂 Oh boy, we are here already!

🛌🏻 In other news we moved James to his Big Boy Toddler bed and donated the $12K medical crib to another medical family that desperately needed it. Their adorable son, also named James, received all of James' old personalized onesies as well. It was quite a big deal since it needed to be taken apart to get it through the front door. What wasn't a big deal was that James had been sleeping in hotel beds with us for a month during our road trip. So we knew that James sleeping in a regular bed would work out just fine. His big boy bed is actually just his crib that he never got to sleep in with one of the railings removed and we added a toddler railing to the side. This also means that everyone can be upstairs in real beds now! Mom sleeps in the nursery with James on a twin bed. This is because James is still on a continuous feed from 9pm-11am. If at any time he just decided to get off the bed he would rip out his G-tube button. 😬 

📦 Since we were able to switch both Enteral (GI) and Respiratory to our new DME, our old DME picked up the rest of their equipment like the portable oxygen concentrator, pediatric flowmeter, several oxygen tanks, suction machine, and pulse ox machine! We are so happy to be done with them! They were so unorganized and everything was a fight! Even the last few phone calls were such a headache for Mom, going back and forth between the DME companies trying to get issues resolved that they caused! We are lucky enough to have backup equipment we purchased out of pocket so that during this transition time we won't be without a pulse oximeter, suction machine, or oxygen. Once we are officially moved in we will receive these things from our new supplier who is headquartered right in Jacksonville!

🤸🏻‍♂️ The word of the month is Progress! James has been pulling up himself anywhere and everywhere. He has even been crawling up the stairs several times a day. This is a workout for him! And at this point, Mom too! 🚶🏻‍♂️His new favorite game is Hide & Seek. James scoots into a room and shuts the door, sometimes locking himself in a dark bathroom. He doesn't care, he just doesn't want to be found. When he knows you're nearby he can't stop giggling. It is the best game ever! 😂

👩🏼‍⚕️ James had appointments with ENT, Orthopedic, and the Pediatrician at the end of the month.👂🏻👃🏻In our ENT appointment, we scheduled James for surgery to close his open stoma on October 12th! It will be an overnight stay at the hospital, so we will be coming back to Tampa for that. It will be a lot easier than transferring to a new doctor and hoping that they would be on the same page with closing his stoma. Once the surgery is done we no longer need to see ENT! 🩻 We also saw orthopedic and they took new X-rays of James's legs. [Photos below] He received great news that everything looked good! Mom raised concerns that when he stands his right leg is always straight and his left leg is always bent at the knee. The doctor reassured us that his legs are the same length and there is no issues there. We will most likely not continue seeing an orthopedic specialist once we move. 🏥 Lastly at James' pediatrician appointment they did new height and weight. He now weighs 11.25kg (24lbs 12.83oz) and his height is 78cm (30.70 inches). James is definitely making progress! At the appointment they also said they could help us with transferring to a new complex care pediatric clinic in the Jacksonville area. When Mom tried to call they told her they were not taking new patients, but that probably isn't the case. 

Speaking of issues of transferring to new doctors and dealing with insurance, we got scammed by an insurance broker in July. To make a long story short, Mom had scheduled a call with an insurance agent to discuss her options for other Marketplace insurance policies. At the end of the call nothing was finalized except that we would talk again on August 1st. Well within 48 hours Mom had received an email saying her current policy would be canceled. Can you imagine that feeling? Being without insurance, while in your second trimester with several doctors appointments in the month of August. After spending hours on the phone between Florida Blue and Marketplace we found out that the insurance broker canceled our current coverage (both mom and dad's) and signed mom up for very expensive plan, so that he could pocket commission. Unfortunately this is a common occurrence that is happening with Marketplace insurance because anyone can just go online and change your policy. There are no repercussions for this insurance agent either just a lesson we learned. We hope that we can help at least one person not get screwed in the future. The answer is to just get insurance yourself, and never speak to a health insurance agent about any insurance policy. They aren't very knowledgeable and have to be the slimiest of all sales people. 😡

🤰🏻 As a family we went to get a 4D ultrasound done out of pocket at someone's home. This is the first time that Dad and James would get to see an ultrasound. She gave us good news in that Mom has a normal placenta cord attachment (both Hannah's and James' were marginal attachments), there is a normal 3-vessel umbilical cord (James only had 2), she is measuring 2 days ahead, the long bones like the femur also are measuring normal, with normal amniotic fluid levels. She said everything looked good. James also got his first lollipop during the appointment. 🍭 [Photo shows how flexible she is with her feet over her head.]

P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com