The long overdue blog post

Wow..I didn’t realize the last time I posted was in December (before Christmas). I have posted Facebook Live Videos on Facebook but I guess I kinda slacked on the blog. I apologize it has been sometime.

So updates on the Miller Family:

Thomas is still working at KWTX and has become a block captain for a Troy Neighborhood Watch group.

Alexander graduated 5th grade with A/B honor roll.

Joseph graduated 1st grade with A honor roll. He will actually be attending a new school for 2nd grade. One that is closer to our new home (yes we moved but more on that in a bit). So I will be walking him to and from school this coming school year. He has lost one of his front teeth and the other is loose but not ready yet. Also in one week he will be 7! It is hard to believe that I have an almost 7yr old.

John graduated from ECI and started therapy at a new facility. It’s one we travel to vs. having the therapists come to us. John also stopped going to McLane Children’s for speech therapy. There is a new rule that they will only see children for 6 months then give them a 6-month break apparently. So we decided to move his therapy all to the same location. John receives 2 occupational, physical, and speech therapy a week. We will actually be going down to 1 physical therapy session as of August 18th since he has progressed so much in just 6 months with having 2 physical therapy sessions a week. John also had hand surgery on his right index finger to remove an extra bone by separating it from the growth plate. His cast was removed on the 20th. The pin to help keep his finger straight will be removed on Friday, August 4th.

If you would like to see the image click here. WARNING: Some may find it disturbing.

John will also be seeing Dr. Ramprasad, GI, on August 2nd for his follow-up. I will keep all y’all updated on what happens. Also John starts Pre-K under the PPCD program when school starts. I am a little nervous about it because I won’t be around him like I have always been; however, this will also be good with his social and language skills too. He will actually be in a regular classroom. His day nurse will be attending school with him as well. We have yet to make a decision on if he will be riding the bus to school (since he will be eligible to do so) or not. Another update is that we are no longer using the ventilator at night for John. John passed his sleep study that he took back on Good Friday to be removed from the ventilator. We are currently keeping it just in case we do need it, but the goal is to not. We are using what is called a trach collar that provides heated mist, but John is doing all the breathing on his own instead of a machine breathing for him. We are increasing his PMV (speaking valve) times slowly. His current goal is to be wearing it at least 4hrs up to 2 times a day. There are days we can get 4hrs (sometimes even more), but others it is hard because he doesn’t want to wear it or can’t tolerate it.

I have been busy with school out and keeping all the boys entertained. I am actually hoping to get a part time job once school starts. I will be looking at nights or early morning most likely.

We moved! We actually just moved a few streets over. So same town, Troy, just a different location. We are closer to Joseph’s new school (about 3-4 blocks).

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