Saturday, October 21, 2017

He's feeling better than he looks.

I've always seen the comparison between the way parents react to the first child vs. the 3rd or 4th child. You know: First child sniffles - call the doctor, third child gets a 4 inch cut on their head - here, put on this bandage and take some ibuprofen. 

This week, we show how the ninth child does in these scenarios. Timmy broke out in a rash of sorts this week. It could be something similar to fifths disease or hand, foot, and mouth, or it could be something similar to chicken pox, or mumps or something. Anyway, we recognize it as some virus driven rash that Timmy is fighting, we treat him at home, and he is bouncing back very well. He really only had a day or two that were rough, and then he bounced back. Despite all the spots, he hasn't been itching at them, and aside from a small fever, hasn't shown any problems other than the spots.

Less than a year ago, we were told a cold could kill him because he was so weak. Now, he just adds to his list of things he has fought off. Still not sure what to label this one, but we're good with that. This is one strong boy, and we praise God for every miracle we see through him.

Friday, October 13, 2017

Nutritionist & Dietitian Visit Update

Well, we made it up to Rochester on Wednesday to see Timmy's Nutritionist and Dietitian. No extra visits or tests this time, so  simple 3 hour drive for an appointment and then 3 hours to get home. We were a little nervous about what they might say about some of the changes we had made to help things go better for Timmy. We had already gotten some negative feedback from a Facebook group on tube feeding about a change or two. Anyway, about 10-15 minutes into the appointment, Dr. Gable tells us "You know, I feel like we're going to talk for 45 minutes and tell you to just keep doing what you're doing." They did end up sticking with that plan. Jen had a couple of questions for them, which made them both pretty excited to actually have to do some figuring for us. We got some good input and advice on how much water Timmy should get in a day, some help figuring a new feeding schedule with fewer feeds during the day, and a good suggestion on one of Timmy's blends. It might not sound like much to get out of 6 hours of driving, but between the advice and the supportive comments about what we're doing, it was well worth it.

We also got a new high chair for Timmy this week. It is a 4 in 1 seating system that works as a high chair, a booster, and a reclining high chair and booster. Timmy is supposed to be fed at an angle, so we are hoping this will help keep him in a better position for digestion to go easier. So far, we're unsure as to whether it is a help or not - only time will tell.

It looks like he is helping with his feeds, but he is just holding the syringe. We can't get him to push in the food, yet.

It does appear he enjoys his chair, though. And having toys and books to look at while eating.

Here's a better look at the angle we can sit him at when he is fully reclined in the seat.

Sunday, October 8, 2017

October update (since they seem to be coming less frequently these days)

We're still here! It seems odd that a year ago I was posting at least once a day, and now I go about 3 weeks between posts. Just 2 weeks ago, we passed the anniversary of taking Timmy to Rochester and getting him admitted that day to the PICU. I am glad for a calmer fall this year. 

So, what are we up to? Well, Timmy has gained a little weight again, and is doing well in all of his therapies. Still quite a ways behind where our other children were at 18 months, but making good progress and often impressing his therapists.

Nutritionally, we are hoping we have figured out a better plan for Timmy food-wise. For a few weeks (at least), Timmy was throwing up several times a day and we were fighting to keep food in him. We are being optimistic, but we have had 2-3 days of nearly no vomiting. Optimistic, because we never know with Timmy, but are hoping we found the adjustments to make his food work better for him.
We are also scheduled to see nutrition up in Rochester this week, so maybe we will get a little more direction or encouragement in what we can be doing for him. But, over all, he is getting what he needs and has been gaining weight slowly. On top of that, everyone continues to tell us how good he looks. I have learned that recognizing a healthy glow is more important than a medical degree. Doctors and nurses continue to say things like "He's not gaining as much as we'd like, but he sure looks good." We'll take it. We think he looks great, too.

Since these are the first pictures I have taken since my last post, I was having fun getting some shots of Timmy. Enjoy!

He sure takes a nice picture. :)

Also, you may have noticed that Timmy has had his first hair cut. The trim from several months ago wasn't holding anymore, so he has a slightly more mature look now.