Wednesday, March 29, 2017

Baby steps - making progress.

Between the normal day-to-day of medications, changing the tape on the canula and keeping the sensor on his toe working properly, we have the normal day-to-day taking care of a baby.
His milestones come at different times than our other kids, but we still enjoy seeing the progress and encouraging his growth and development.
He doesn't bounce much in the bouncy seat.

He doesn't sit up real well without several props.

But look at that boy hold an ice pop. (He didn't eat it - don't worry)

And he can make lots of noise and smile.

We are blessed.

Sunday, March 19, 2017

More blessings

This week has convinced me that we have not totally escaped the fog that our heads have been in since late September of last year. When Timmy went in the hospital, we pressed 'pause' on a number of things in life. Normal, everyday things just got pushed aside to make room for the necessities: loving on Timmy, visiting Timmy, keeping each other encouraged and rested enough to meet the day's challenges, keeping kids fed, clothed, and learning, and keeping gas in the vehicles for the many trips to Rochester.

When we found out a month or so ago that the cardiologist thought Timmy was in a good place and much stronger than he was in the hospital, we felt a weight lift. And with it, I thought the fog had mostly rolled away.

Until this week. This week I found mail from December that I had not yet dealt with. I found papers that I stashed to deal with later that still need to be cared for. It made me somewhat upset at myself for not keeping up better, but these faces of Timmy always remind me of what is really important.

We are blessed that he continues to grow. We are blessed that he continues to develop. Certainly not on a standard schedule of development, but he is fighting his way forward. We are blessed to have the strength to care for him. We are blessed to have the finances to meet our needs and Timmy's needs (and then some). We are blessed to see these faces every day, to hear the sounds coming from his mouth, to watch his eyes dart around looking for us at various times.

God has been very good to us.

P.S. - for the observant, you may notice that these pictures are not the most recent pictures, but they are from this week, and we haven't shared them yet.

Wednesday, March 15, 2017

Timmy's new bed!

I think he likes it! Our backs will like it, too.
All wooden construction with all metal hardware. Seems very sturdy and came with a mattress that fits so snugly you have to push it down into the crib. (No dangerous gap)
Easy to assemble, too! Our old crib is still functioning just fine, but we needed a smaller crib for the living room, and this is the same size as a Pack and Play, but much sturdier. 

Tuesday, March 14, 2017

Summer's Timmy Pictures

I was encouraged by Summer today that she needed more pictures of Timmy to look at. Well, Summer, here you are!

He is doing well and has recovered well from the pneumonia. His oxygen levels are not staying up as well as they did before he was sick, so the canula is still a regular part of his appearance. He is 'talking' more and making more sounds, so we are grateful to see developmental progress as well. More strength in holding his head up, working towards rolling and even pushing more on his legs are all baby steps that we continue to see progress in. He is not where our other kids were at 10 1/2 months old, but just breathing is big work for him sometimes, so we will work with him and enjoy the blessings of progress. 

Timmy likes his toys, but 2 of his favorites are the 'sample' g-tube they gave us in the hospital to show us how it worked, and the syringes used for medicine (don't worry, the ones he plays with are ones loaded with water or tea that we use to wet his whistle from time to time)

Thursday, March 9, 2017

Improving! :)

Yesterday we visited Timmy's doctor who let us know that his lungs have cleared up and the pneumonia is gone. He hasn't had a fever this week, and just continues to have coughing fits and some gagging on sinus drainage from time to time. We also learned that albuterol doesn't interact well with some of Timmy's medications (it magnifies the effects of the furosemide - which sends potassium out of his body causing a potassium deficiency which can make patients pretty uncomfortable in several ways). It also minimizes the effects of the digoxin which he is on to try to support his heart function. After a day off of albuterol, he is looking much better. We are hoping tonight will be a 'sleeping much better' sort of night as well.

Timmy was being very photogenic this morning, so enjoy!

Tuesday, March 7, 2017

Not much news, but since it has been a week . . . :)

Timmy is still fighting congestion, and we are still making adjustments to see what works well.
We had been doing nebulizer treatments of Albuterol to help loosen junk and reduce inflammation in his airways to help him breathe. This was working well, until we noticed he was getting very restless and moving around a lot, especially at night. That's when we realized that the Albuterol was causing him to be agitated. We tried going without the Albuterol, but that caused his coughing to be worse, and his oxygen levels to dip. All this while lots of Timmy commotion at night means we were getting reduced amounts of sleep. Perfect storm of building frustration and concern for parents. 

He seems to be getting over the pneumonia, but we'll find out better tomorrow when we see his doctor for a follow up visit. For tomorrow's score card, we have a dentist, an orthodontist, and a doctor visit to make it to with 3 different kids. On top of the normal Wednesday routine. At least we should find out if Timmy is improving, and maybe get some suggestions on helping him out without losing out on sleep.

Our VNA nurse suggested getting a home suction machine for helping clear his congestion. We are waiting to hear if that will be approved through all the proper channels, but it should help reduce the ongoing problem of Timmy not being able to clear the junk in his throat very well. Not just since he has had a cold & pneumonia, but since birth. It is one piece of equipment Jen has missed being able to use since leaving the hospital.

And now, for the best reason to check out the blog - Timmy pictures:

We continue to covet and appreciate your prayers. God has been very good and we are glad for the miracles we are able to witness in Timmy's young life. He is truly a blessing in so many ways.