Friday, December 22, 2017

Update & the 'Ugh' of holidays

He didn't let me get a good picture, but he had fun 'opening' a couple of presents from his therapists.

His therapist's seemed to enjoy the soap they got from Timmy, as well. 

We had a nutritional visit in Rochester this week, as well as blood work done. We got more encouragement from his nutrition team, met the new dietitian working with the nutritionist and got some questions answered. He is gaining slowly, but gaining is gaining, so we were happy to hear that report from them, as well.

The blood work came back with almost everything in the normal range, so the diet we are feeding him and the stopping of several supplements are both working well for his body being balanced well, even with the diuretics that help get rid of certain nutrients.

As far as the 'Ugh' of holidays, please don't take this as complaining. There are certainly times we wish life could go back to normal. No tubes, no wires, no endless stream of appointments, medications, feeding schedules, therapists, etc. But if that is the 'cost' of having Timmy with us, I don't want normal. But it doesn't mean that we necessarily enjoy all that goes into the cost.

So what about holidays? While they are special times, and we enjoy the pause to reflect on God's blessings in special ways, a pause means something different for us now than it did a couple of years ago. I just want to share to help you understand us better or other friends that may have medically difficult children or even a spouse or parent in their lives. Holidays are different. We have medications to order every 2 weeks (due to limited shelf life), others every 30 days, g-tubes get ordered every 3 months, and enteral supplies (other feeding supplies and g-tube care) every month. One pharmacy is only open Monday through Friday, other schedules are harder to figure out. Since insurance covers supplies every so often (at different intervals for different things), it is best to order some as soon as they are available to order. For example - I order Timmy's g-tube on the 22nd every 3rd month. It's in my Google calendar. Today, that works out to the Friday before Christmas. Apparently, that is a bad day - offices are closed. The schedule gets moved up 4 days from the old schedule. This time, there is no 'need' factor, just a reworking the reminder in the calendar and another phone call to make another day. Not much, but it adds up.

As far as the rest of holiday celebrations, we aren't as good at juggling as we would like to be. Holidays can be overwhelming in expectation, even if not much special happens.

We are looking forward to special Christmas Eve services at church on Sunday. Due to the timing of feeding schedules, not all of us will be there for all of it. Timmy may make it to the evening service, but not be able to stick around for the fellowship time afterwards. While many will put up with his retching sounds during a feed, it is a lot of work to take a portable feed. (Syringes of food, water for flushes, medications, burp cloths and supplies for venting/burping his tummy, and trying to position him to keep his food own). 

I share all this, not as a complaint (I love having my boy with us), but hopefully to help you understand us better. We've changed. It isn't you, it's us. We miss the old us more than you do.

We will have a quiet day at home on Monday. It looks like several kids will be able to go play in the snow, we'll open some gifts, we'll enjoy some good food (and egg nog, probably), and we'll spend some time reflecting on the Savior who gave up more than we ever could, to bless us far beyond what we deserve.

Merry Christmas from Timmy's Family!

Thursday, December 14, 2017

Timmy pictures to brighten your evening.

Good timing makes a good picture. This one was snapped in the split second between grabbing the crayon, and flinging the crayon across the room.

Older brother helping Timmy color.

Timmy enjoying his "Tubie Friend" - a custom made stuffed animal for Timmy with his usual equipment. It was ordered before he has been able to be off of oxygen regularly now. If you're into sewing and looking for a service opportunity, Tubie friends uses volunteer surgeons to make the friends and provides the materials to do it.We paid the volunteer donation to cover the cost of ours and shipping charges, but they will give them to children who request them. I think they may get a discount on "Build-A-Bear" stuffed animals (or donations). This one came with a card that had a favorite verse from the Psalms on it. "I am fearfully and wonderfully made." 

As far as being off oxygen, the VNA nurse noticed that his heart sounded less "Timmy-like" on her last visit yesterday. His normal beat is more like a galloping horse than a regular heart beat, but not recently. What does this mean? We don't know, but there are 2 possibilities that we can think of. Possibility #1 - in switching one of his medications, it is helping his blood pressure in a way that evens out the pressures between the chambers of his heart and there is less 'backwash' between the sides. Possibility #2 - is that his heart is just working better due to how his heart is growing or due to some level of healing of his heart. In either case, we are grateful to God that even as good as he has been looking (add the doctor that delivered Timmy to the list who have said it), improvements in any area are still a welcome blessing. Timmy has been throwing up quite a bit the last day or so, so he may be fighting off a stomach illness, but he has had an increase of energy lately (even while sick) that has come with his heart sounding better. 

I started to just post a picture update, not thinking there was much to update, but I guess there was. Been a busy few days around here, and it is good to stop and think about the good news.

Monday, December 4, 2017

Some of my 'son'shine for your morning.

Timmy has been wide awake the last several nights around his bedtime. Here he is an hour before bed - he really gets his second wind.

And a short video of Timmy playing on his piano. I may have to take more video for the therapists as Timmy has not wanted to work much for them recently. He 'shows off' before they come and after they leave anymore.