Thursday, September 13, 2018

Pictures!

Playing with his hat, hoping someone will see him and take him outside.

He likes mother goose telling him nursery rhymes.

Not sure what this face was for....

He likes making her chew on his fingers.

He wasn't too happy that we were switching his clothes and trying all of his winter clothes on him.

Thursday, September 6, 2018

Pictures!

This may not look like a big deal, but, he used to scream just looking at other people swinging, now, he loves it. Tonight he was swinging for a good 5 minutes and was happy the whole time!



Making faces.

Picture with birthday mommy!

He loves licking watermelon.



Thursday, August 30, 2018

A few Timmy Pictures

These are a little blurry, but he enjoyed the ride in the van the other day. 



He still likes putting things under his chin. 

Wednesday, August 22, 2018

Timmy pictures.

Dressed up for church.


                                          And a couple pictures from the last two Augusts.
August 2017

August 2016

Thursday, August 16, 2018

Pictures!

Talking on his play phone.

Watching the wood get split. 

Enjoying being outside.

His new trick, everything goes under his chin. 


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

Pictures



What should I do with this?

I think I'll dump it!


Ta-Da

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)




Peek-a-boo







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. 


Wednesday, April 11, 2018

Cardiologist Visit Today

It has been 5 months since our last visit with the cardiologist. This is the longest we have gone without seeing him.  We're getting longer on a lot of visits. No more VNA visits, next month will be 5 months since we saw nutrition. And even with going longer between visits, this one was planned to just be a consult. No tests were planned, just weight and measured. We thought tests were planned - Timmy's insurance called to let us know an Echo was approved, so we thought one would be done, confusion ensued, but the Dr. and the image specialist who does the echo's was more than happy to do one on Timmy. The Dr. said she's had a thing for Timmy since the first time she did his echo.

Everything is still the same. He is doing as well as a kid who had gotten surgery. Some of the cardiologist's comments:
"Hey, don't listen to us Doctors, we don't know what we're talking about."
"The man upstairs knows a whole lot more than we do"
"He's doing great!"
"Look how good he looks."

Anyway, the cardiologist approved the removal of another medication with monitoring. He was happy that we were down on another medication, and he was happy to not raise the amounts of any of his medications. This puts Timmy down to 4 medications. 2 taken twice a day, and 2 taken once a day. A long way from where we started and we are grateful.

OK, here are your Timmy pics.



Saturday, March 31, 2018

Someone was sleepy . . .

I know, there haven't been many updates. I have my excuses (like it being tax season and barely having time to do the necessary things most of the time), and, thankfully, things are pretty 'normal' around here. Normal for us may not be very normal, but things have been quiet with few surprises, and very few appointments.


Since his last update, we have decide to pull the plug on the VNA visits. Our normal nurse got moved elsewhere, and we had a string of other nurses who didn't like reading up on patients, but preferred to hear a patient's story from the parents. Incidentally, having to tell someone things they can access in their tablet gets old really quickly. Also, the big service they were providing at this point was to weigh Timmy every 3 weeks. If things change, we can ask his Dr. to start it up again, but it was getting to be more of an interruption than a blessing.

He continues with therapy 3 times a week (speech, occupational, and physical), although he has had the last week off as sickness has swept through the ranks in our house. So bad that our college kid has been pretty much down and out for 4 days now, and it has hit everyone. Timmy seems to be on the mend as of this morning, and slept well last night as well. 


In 3 weeks, we have our first Cardiology visit since the beginning of November, and in May, we go to nutrition for the first time since December. It is weird to have so long between appointments, but a blessing that things are much more stable now.

As I think of Easter tomorrow, I understand quite well the joy the disciples had in the empty tomb. Our boy was sent home to die 16 months ago, and is still with us. I may not have an empty tomb, but the empty coffin is a comparable joy.
Built with love and with much sorrow, but the continuing source of great joy. The coffin is empty, just as the grave is. For Christ, He is risen! For Timmy, he is still with us! I enjoy celebrating life!