✨ Official Facebook Update! (Feb '22

It has been one year since we have been discharged from the hospital on September 10th! 😁 What's so interesting is that two of my closest trach mom friends had babies with extremely long NICU stays who were also discharged around the same time! ❤️ 🎶 Do you remember...When we were discharged in September? We would soon get a DME vendor.. While chasin' the clouds away. 🎶 😆

Here is an official update on James! He is 20 months (16½ months adjusted) and 20 lb. Technically once he reaches two we're not allowed to say adjusted anymore. 🤣 I believe the last update on Facebook was in February. Well since then a lot has happened!

First off, we let go of all of our nursing in March. To make a long story short, it came down to incompetence, laziness, and James' safety. It was pointless in having them because I was doing everything, and they were simply charting what I was doing. Training and retraining nurses who have over 10 and 20 years of experience was ridiculous. We are lucky enough to be in a position to not need them and it's been wonderful! There is a reason so many medical Moms say it's one of the best decisions they've ever made. I highly recommend firing your nursing. To read more details on our experience with home nursing feel free to check out the blog (Day 433). I could rant for hours. 😂

We now have therapy 3x times a week with Early Steps in the home! Our physical therapist is amazing and we have also added in speech therapy and early intervention therapy through Early Steps. James has made incredible progress with his physical and cognitive development! He is trying to stand on his own (Day 616) and is scooting as fast as can be! Although he has not said his first word yet he babbles all the time and is very close. We are really working on signing with him and he has now officially communicated his first sign for "more". Interestingly enough it was for "more" music. James has been trying plenty of purees but we think his all-time favorite is still greek yogurt. He has no problem with sour lemons 🍋! James now has a mouthful of teeth and his molars have been coming in. He also loves tickles and has started to show more affection (Day 611). Most preemies are pretty independent self soothers which is great when putting him to bed but sometimes Mommy and Daddy just want a hug. 🤗😆 Our current focus with physical therapy is weight-bearing through his arms because we kind of skipped tummy time having a GJ. He really refuses to use his arms so it is a lot of practice.

At the beginning of this month, James was supposed to have his first trial off of the ventilator. Unfortunately that has been pushed back. We would like to have a timeline but we understand that it is hard for a doctor to give us dates. There is a ridiculous amount of patience that you have to have! So just throwing a guess out there we are expecting to have a trial off the vent at our next appointment next week. 🤞 We get asked all the time when he's coming off the vent. Yes we would love to know that too! All we can do is look at the averages of baby toddlers with BPD. Most have their ventilator until 2 years old, then they have their trach for another year, and are decannulated at 3 years old. That is just the trach and vent. Then we have to transition from the GJ.

As far as his helmet, eye patching, and torticollis they are all improving. We cannot recommend enough how helmeting needs to be done as early as possible to make the most difference. James is now done with the helmet and has made some improvement. We have not been very strict with eye patching due to wearing the helmet (it was just too much), but overall seems better. We will continue to eye patch and need to schedule a follow-up appointment with that doctor. It's on my to-do list! The torticollis is something we will need to continue working on so that he doesn't have muscle imbalance, but overall it has greatly improved, especially with physical therapy. 💪

In early April we had an ER admission due to respiratory distress which ended up being a trach infection and he was put on antibiotics. Then 2 weeks later while visiting in Jacksonville, James' GJ popped (2nd time) and we ended up at Wolfson's for an emergency change. They did not have the right size button so for 3 months we were stuck with an extra large button that leaked 24/7. We actually needed to change GI doctors to make that happen. Finally at the beginning of August we were scheduled for a replacement to the correct size. But in between there James got covid and another trach infection and put an antibiotics again. It has been non-stop with the tracheitis. 😩

Actually last night we were contemplating going to the ER. Not to commemorate our discharge date but because James had a fever, high respiratory rate, high heart rate, increase in secretions, needed an increase in oxygen, and was having lung retractions. We watched him closely for a few hours until he fell asleep and his numbers got back to normal. What this means is James is definitely fighting another trach infection (which is common) and needs to be put back on antibiotics. So we are hoping that we can get through this weekend until Monday and then get in with our pediatrician so we do not have to go to the ER. 🙏🏻

James is now a baby toddler! Even though James has a lot of equipment he has made it to the zoo, the aquarium, both malls, the museum of science & industry, several restaurants, and a few roadtrips to Jacksonville. 🚗 We are not letting this stop him from doing what he can. James got his first haircut and had his first experience in a pool! He is very social and loves meeting new people. We definitely need more play dates! There isn't one person James won't smile at, so if you haven't met him yet just message us and let's schedule a visit! 👋

Lastly, we've been using Blogger and in June they stopped sending out the email subscriptions. Recently I integrated our blog with MailChimp to continue that service. If you are subscribed to the blog via email will start receiving those again shortly. Check your Promotions folder then Spam for "Journey of James Weston". MailChimp is always marked as spam. To subscribe by email there is a link on the blog. 📨