Tuesday, August 14, 2018

Making Gains in the feeding department

Timmy is feeling much better since struggling for a week or so with congestion and coughing fits.

Right before he got sick, we embarked on rearranging his feeds a little. Since we had been feeding 7 different times during the day (and each feed was multiple syringes of food for the g-tube pushed in in multiple pushes with 6 or 7 minutes between pushes of food), we had gotten to having problems with his tummy never quite emptying out, and having more gas issues. Since these seem to come up every month or so, once we recognize what is happening, we try to make a plan for things to go smoother.

This time, we knew that the fall schedule was going to be different for therapists, and with his older sister in college, different for help around the house. So we have reduced his feedings down to 5 or 6. The morning bone broth is followed pretty closely by the morning smoothie, so it is practically one feed now. Then, we have greater spacing between the rest of the feeds of the day, and are starting to further increase the amount he gets in a feed. Due to recent increases, we could reduce the number of feeds without reducing what he had been getting, and the changes look to mean we will be able to increase his feeds more in the coming days.

Since bouncing back from his congestion (pretty much just yesterday and today), the new feeding schedule seems to be working out well for him. We still have some changes to make to the food he is getting in the coming days, but changes are best tried when things are nicely evened out.

With another sibling headed off to college this fall (living at home, but away from home more), we have more adjustments to make in the coming days, and would appreciate your prayers for them. God has been so good, and we can't help but thank him every time we look at our little blessing.

Wednesday, August 8, 2018


What should I do with this?

I think I'll dump it!


Now I'll chew on this block.

Right now he has a little bit of a cold and isn't feeling the best sometimes. 

Wednesday, August 1, 2018

He likes being outside. 

Play time!

Nap time. 

Looking at a book. 

Saturday, July 28, 2018

Timmy Pictures

Since Timmy has few and far between medical updates these days, we now have a permanent 'guest blogger' to help out by sharing Timmy's cuteness with you. We hope you all enjoy the updates.

The 'Itsy-Bitsy Spider' (hand motions, he hasn't quite figured it out yet though)


Mommy (In sign language)

Wednesday, July 18, 2018

Fun With Timmy

Lighting is pretty bad, it gets out of focus sometimes, and the studio isn't very clean, 
but this has been the normal 'getting ready for bed' Timmy recently. 

Sunday, June 3, 2018

It's not the heat, it's the humidity

Last night, as I was posting pictures from a week ago, Jen was figuring out that Timmy was being super fussy because his oxygen sats. were in the 50s. Timmy's cardiologist has told us as long as it is over 70, everything is fine, so 50s was not fine. He had been struggling to breathe a little and just was plain cranky - makes perfect sense if his oxygen sats. were so low. 

So, we scratch our heads, and came up with the answer quicker this time - since this has happened before. The cooler weather came in, but since it had been so hot, the humidity was very high with the cooler temps. The AC doesn't run so much when it is cooler out, and the air was more humid than normal. One of the VNA nurses brought the humidity problem up last year, and it makes sense that is what is happening again. 

We upped his oxygen and he is doing better, but it appears we need to be able to dry the air when it is cooler out, so I guess it is time for a dehumidifier for the downstairs to use when it isn't hot enough for the AC to be running.  In the meantime, we're hoping it warms up enough today to have the AC running more to dry out the air, windows open with 90+ percent humidity doesn't do any good for Timmy.

Saturday, June 2, 2018

Timmy pictures, since I was badgered today. ;)

I love that face!

These were taken the day we were celebrating J's birthday. He was opening presents, and I got pictures of that, too, but this little guy is irresistible.