So Lennon was doing well and then last week, screams and tears and no sleep plagued the Lennon. He was working on an infection around his gastro-tube area. We called the docs who stated to keep it clean and dry – Done! Then over the weekend, the area became red and another phone call to the docs – bring him in on Monday!!

It was not infected (yet) but out of precaution they placed Lennon on an antibiotic and gave him an IV with fluids and marked the red area for us to watch and see if it gets bigger. The worry is cellulitis and bacterial infection…ugh parasites.

Within hours he improved, his attitude and energy level went back up. Though he is still not sleeping well (sleeping disorder is back?) he is much improved. The infection hopefully stopped and under control.

On the positive note, Lennon grew 3 inches since June which the doc seems very happy about and appears to have been a worry and he gained 700 grams, weighing now 42.5 lbs.

They also took some film (x-ray) to see where the tube was located and if it’s still in its place..well the j-arm has coiled back and all feeds and medications are actually going into his stomach. This is good news because this means his stomach is beginning to handle what it is given!

If we could just encourage him to eat the kind of food his body needs, but no such luck yet. Though he has started to eat a few things, yesterday a banana, periodically some oatmeal and Rahmen noodles he is still very much hooked on candy and salties (potato chips) and his drinking is still not up to par. Hopefully, time will allow him to taste the various foods that the world has to offer.

In addition to the gastro appointment, Lennon had his annual eye appointment. He did amazingly well – cooperated most of the time.

The result: Lennon will need glasses at some point as his near-sightedness will get worse over time. This means once he is able to go to school, he will struggle to see the board. The doc did not want to move forward with getting classes now due to Lennon’s development and the most likely probability he’s not quite ready to wear the glasses just yet. Hopefully in time, when the time comes he will wear them!

Today Lennon is cranky. As I mentioned he is not sleeping or at least not sleeping well. He was up till midnight and up again by 7 a.m. and it is unsure if he slept the entire 7 hours, though I doubt it! It is time to go back to Neurodevelopment and have a discussion about this as well as noted behavioral issues and development of Lennon or the lack thereof. He is, however (finally) trying to use the bathroom, at least in the mornings. This is progress so there is hope that the time will come when Lennon is potty trained.

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One Comment

  1. Thanks for posting. I was wondering how things were going. Sounds like you're doing a great job!

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