August 2023 - The Big Move & Making Big Moves!
August has been such a busy month!
🍴We started off the very beginning of the month with a GI appointment. Dad was able to come this time, which was super helpful. James likes to scream and it makes it nearly impossible to talk to the doctor and dietician. This was only our second appointment with this new doctor; the first time was at the end of May. Since then James has made so much progress! Well today was no different. The doctor switched out his GJ button for a MIC-KEY G-tube button in the office! It was almost 2 years to the date when James got his GJ placed in the PICU. The reason she was okay with switching the button was because James had been getting fed through his G-tube for 2 months and he also was tolerating his new formula which was higher calorie. The doctor also gave us an okay to wean James off of Prevacid over the next week! Her instructions were to increase his rate until we get 100 ml/hour. At the appointment he was only at a rate of 47ml. Mom and Dad did the math and figured if we increased it by 5ml each week we could get to 100ml by mid November.
🗓️ We made the decision to stick with this doctor instead of trying to find a new GI. Mom has been heavily researching specialists and getting recommendations from other medical moms in FB groups. The overall consensus is that there aren't great GI teams in Jacksonville and we would have to go to Orlando. At this point, it didn't make much sense to switch to someone else when at worse case we just need to come back every 4 months. We tried to schedule a follow-up appointment for the week we come back to Tampa in October for James' stoma closure surgery, but the doctor was not available. She was okay with us doing telehealth appointments. At the end of the appointment, Dad expressed his gratitude to the doctor for helping us make so much progress, for giving us a plan with direction, and just caring! It's been night and day a huge difference!
🫁 We also had our last pulmonology appointment with our doctor that had seen James since the NICU! He asked Mom if she ever thought we would get here (to this point of stability). Back then in the hospital it seemed like getting to this point of James being trach/vent/tube free would take forever, knowing it would be 2-3 years. In reality, time has gone by so fast! We are so grateful how things have progressed this year! ❤️ Our appointment was mainly just to say goodbye, get refills for his inhalers, and a referral to a new pulmonologist. They were also okay with us doing telehealth appointments until we found a new doctor. Mom let them know that their office was our favorite and the most efficiently run out of the 8 specialists we saw.
👨🏻🦽🚶🏻♂️We also started off the month with James getting his gait trainer from Custom Mobility! Our sales rep who came out was super friendly. It only took a few times for James to figure it out. With the help of our physical therapist we adjusted it so that the straps were in the right position. What is the difference between a walker and a gait trainer? Compared to a walker, a gait trainer offers more extensive support and is typically used by children who are not able to consistently bear full weight through the legs. In James' case, he has no problem bearing weight through his legs as he does pull himself into standing quite often, he just prefers to scoot around instead. We are hoping the gait trainer will encourage him to want to walk. In our new home there will be much more room for him to explore! James figured out that he can kick a soccer ball when he's standing! ⚽
🛌🏻 We had a couple of situations where we "fed the bed". This means that the entire night of getting a continuous feed ends up pouring into the bed instead. All feeding tube moms are familiar with this. The first time was because James' feeding tube disconnected from his extension. After this, Mom made the decision to switch to Enfit. We were holding off on switching because we have built up a stash of the original regular extensions and wanted to use them all first. These are the new feeding extensions, called EnFit, screw in instead to prevent these accidents. However just a few days later we "fed the bed" again because his entire extension came disconnected from his button. There's no real way to prevent that! G-tube buttons are able to swivel in a complete circle and with a toddler tossing and turning in their sleep this happens very easily. Unfortunately there's no solution for this when they are fed continuously overnight. The only real suggestion mom received was to change his feeding schedule to the daytime. Unfortunately that keeps him tethered and he is not able to be free while he's awake. It is crazy how much James tosses and turns in his sleep. Between his feeding tube, the pulse oximeter cord, an oxygen tubing sometimes he will have several cords wrapped around him twice. Pretty terrifying to see it wrapped around his neck. Thank goodness the oxygen monitor is always on!
📦 Mom's goal this month was the donate all of the medical supplies we no longer would use. This involved several moms picking up boxes from the house as well as dropping off to medical daycare centers called PPEC (Prescribed Pediatric Extended Care). 📞 A lot of phone calls needed to be made to government entities including calling Social Security, Department of Children and Families, Medicaid, and Early Steps. We needed to update our address and transfer records. To make a long story short, Mom sometimes would be on hold for a whole day never talking to anyone and when someone did pick up they were very rude and couldn't help. At one point after doing some research on a Reddit forum Mom contacted a local state representative in Orlando to help connecting to a human. We would love to say that everything has been resolved but it has not and may never be. It's a constant loop. James has Medicaid through Social Security and not through DCF (Department of Children and Families); however, Medicaid and Social Security says that we need to contact DCF in order to update our new address. DCF says we don't exist in their system and we need to contact Social Security. 🔁 See the frustration? 😡
🤸🏻♂️ We had our last physical therapy and early intervention therapy appointments. Our physical therapist started with us on November, 1st 2021. Almost two whole years! She had seen a lot of progress from James being pretty immobile in a crib with a trach and ventilator to seeing James freely climb 18 stairs by himself with no tubes and witnessing James take his first steps in his gait trainer. We ended up having our exit interview with early steps. Basically they needed to just put a report together of where James is at so they could submit it to the new county. Once James turns 3, he is no longer eligible for early steps, which is how we have PT in the home. So far the process for transferring him to a new county has been awful, and will probably take months. What do you expect from a government program? 🤷🏻♀️
🚗 📦 Juju and Aunt Robin came to help Mom pack up the weekend before the move. Dad took James out of the house to help as well. This was the first time Dad drove with James by himself. They saw the original Beauty & the Beast at the theater 🍿, went to the International Mall where James played with other children in the Play Area 🤸🏻♂️, and explored one last trip to Busch Gardens. 🐘🪇
🚚📦🚛📦After getting several moving quotes we ended up going with the cheaper quote. Moving overall just sucks! Can anyone really say they had an excellent experience? 🤣 We moved on Saturday the 26th. To sum up our move, we are glad it's over! Even with Juju and Aunt Robin helping us the weekend before and packing up half of our stuff we still needed the packers all day Thursday, Friday, and half of Saturday. We had a woman pack the kitchen and took absolutely forever, bubble wrapping each individual piece and then wrapping it again in paper. We are talking bubble wrapping plastic cups! This was in between her eating or taking an interview over the phone. On the other hand the male packers were upstairs just throwing crap in boxes, and not wrapping furniture. Needless to say things were broken, damaged, and dinged. Our massage chair was cracked in half. The problem wasn't so much the workers but that the owner had them doing several jobs a day. They were overworked, probably underpaid, and very overwhelmed. It turned out that cheaper quote ended up being twice as much anyways! We don't understand how people can move in less than 3 years. It feels like it will take 3 years just to unpack! 😆 On another note, both James and Mom caught Dad's bronchitis. He had it for about a month and was quarantined, but as soon as we got to Saint Augustine Mom and James woke up sick! 🤧
🫂 We wish we could have met up with more friends before the move but it just didn't work out. Mom saw her local trach mamas before the move, we met up with some old friends for lunch, and Dad had a get together with current clients and a lot of former cutco people at a small local business.
🤰🏻 Mom had three appointments this month with 2 ultrasounds. The official 20 week anatomy scan with the MFM (high risk doctor) in Tampa, final OB appointment in Tampa, and we also met the new MFM in Jacksonville. All excellent news! As of August 31st at 23 weeks, she is 1lb 6oz! This is bigger than when James was born! It is really hard to process! 🥹 🩻 At the in-depth 20 week anatomy scan, Mom was there for hours so they could ultrasound everything in detail. All IVF pregnancies require them to do detailed ultrasounds of the heart. The doctor peaked his head in half way through just to say, "I know you're probably nervous but I came to tell you that everything looks great so far. I just really wanted to be able to finally give you good news. We have a lot to catch up on". When Mom met with him at the end he texted his old MFM buddy in Jax and sent over the medcial records. One of our favorite doctors! He said that this pregnancy so far is completely different but we will still want to watch everything like a hawk. He let Mom know they would not do another classical c-section but just a regular one. Since a previous classical was done Mom would need a c-section at 37 weeks at the latest for her safety, which would be December 10th. VBAC is not an option after a classical c-section. We could even deliver at the local hospital if we get to 37 weeks. She moved around so much during the ultrasounds and kept putting her hands in front of her face. They took over 122 photos! 😍
Love hearing all the good news! ❤️
ReplyDeleteThank you! It's exciting! ❤️
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