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.

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.

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.

Life with Timmy, what's not to love?

It is great to see Timmy continuing to grow and develop. Some things don't change: he is still on several medicines, he still has a major heart issue that is not a good candidate for surgery, he still needs oxygen to keep his oxygen sats over 70% most of the time, he is still being fed by a g-tube, and he is still a great joy in our home.

Some things continue to change: he is sitting up for longer and meeting every goal the therapists set for him, he has been sleeping better through the night again, he is getting faster at rolling around the room (especially when getting 'chased' by daddy with the hair clippers - sorry, no new picture since last night's trim), and we have removed 2 supplements from his medicine list (as per his cardiologist).

But here he is playing like a champ!

And smiling like a champ! (He's always had a great smile)

Actually, several of them.

Such a silly boy.

The kids love playing with him and reading to him, as well. Even if the child doing the reading doesn't actually read, yet.

His pillow helps support him and make it safer to leave his side while he is sitting, and his toy (a gift from his speech therapist) keeps him pretty occupied.

Time for the bi-weekly update! ;)

First, the picture. Right before this picture, Timmy rolled from his back, onto his stomach and continued right over onto his back again, then up on his side to look under the couch. Even with the wires and tubes, he's getting to find his way around.

Something really interested him under there. Jeremiah found a couple of his plastic balls under the couch, so we think those may have been the culprits.

He's continuing to do better sitting up and playing, playing on his stomach, and making babbling sounds closer and closer to words. All good news as far as his therapy is concerned.

The VNA nurse that stopped by today could not believe how good he looks. (We already knew he looked really good - such a handsome fellow!) She also weighed him and his weight has hit an all time high. He had lost a little weight over the course of the last month as we have been transitioning to a blended diet. Partially, that is a common occurrence when changing over from formula to real foods, and partially, we were still learning how to get his calories in the volume of food he could tolerate. 

On that front: even more good news. After meeting with the dietitian and nutritionist again, we realized we had a few big steps to take to get calorie counts up there. We are still working on the adjustments, but we submitted one of our blends to the dietitian to check over and we got a big thumbs up. She said our feeds were just what Timmy needs to continue to grow and develop. She also said she checked in on the blog and feels our post on preparing blenderized diets would make a good start of a YouTube video series on preparing blended foods for g-tube patients. We'll leave all that for someone else, but are grateful for the vote of confidence from the professionals. We have a great team of Doctors, nurses and professionals working with us with Timmy. We hear stories of other families struggling with the caregivers for their little ones, and we are more that appreciative for the team we have. God has been very good, and we are glad.

The only down side currently is that Timmy isn't sleeping super well at night, so we are again low on sleep around here. Such a small complaint with all that we have seen and been through, but your prayers are appreciated.

Round of Appointments Completed!

Well, our week of appointments are over. When I sit down to write updates, I always think - I should take pictures of Timmy at the Doctor's office, or at the hospital, and I always forget the next time. So you can enjoy pictures of Timmy while he was getting his breakfast this morning.

Last Friday was the cardiologist, and we 'lost' one of his diuretics from his medication list. So far, that change is working and we are glad to see one medicine go. On Monday, Timmy updated his primary care physician on his growth and development. He was weighed, measured and questioned thoroughly about his abilities and what he has been up to. I had forgotten that it had been about 3 months since we had been to see his primary doctor (it was 4 since the cardiologist appointment). When the doctor pulled up the growth curves, Timmy is still hanging onto the absolute bottom of the growth curve. If he were to hit the 5th percentile, it would be a huge jump for him. Kids grow at their own rate, and he had a few months off from growth, so the doctor would love to see him get up higher on the curve, but it is nothing worrisome at this point.

Yesterday was our visit to Golisano Children's Hospital in Rochester. We started out in Radiology to meet with Heather Goetzman. I cannot remember her official credentials or even title at the hospital, but she works with the Doctor who placed Timmy's g-tube. She helped us get ready to come home by showing us how to care for the tube site. She put a new Mic-Key button (g-tube) in back in December when Timmy's tube had come out and we went to the ER up in Rochester. At any rate, we have a real affinity for Heather and appreciate all the help she has been. She looked at Timmy's tube site (the primary reason we made an appointment to see her) and declared that it looked great! There had been some granulation tissue that was there (scar tissue the body produces to try to close the hole) that had been swollen and red and tender. We had been prescribed a steroidal cream to put on it, but it wasn't helping, and seemed to be causing more trouble. We had heard just using diaper cream with allum powder helps so Jen had been treating the site with that for the last week. I guess it was a success.

She came in carrying two boxes with g-tubes in them. She looked at Timmy's tube, decided that it was time for a shorter tube, and swapped out his tube and updated his chart. Our appointment probably lasted a half an hour, with plenty of questions on both sides, advice given, and the 3 minutes dealing with the tube site and changing out the tube. Well, and she also made sure we knew how to get in touch with her directly if we needed to - a pretty common thing to happen with Timmy's caregivers in Rochester.

We had an hour off between appointments so we headed up to the PICU to visit some friends. Not Facebook friends, and not friends that we drop in on or invite to our house, but still friends that greet us with smiles, hugs and are fun to talk with. Not many were in that we knew yesterday, but we saw Dr. Alfieris, Dr. Rubenstein ("If it wasn't for seeing you two, I wouldn't recognize Timmy!"), Elana (the nurse who made Timmy's sign over his crib, among other things), Jessie, Jen, and Chris. All special for different reasons, and all special for the same reason - they all loved on Timmy while he was in the hospital and continue to gush over him when we visit. I think they all got to hold him while we were there and see Timmy's smile. 

Next we met with the gastroenterologist (Dr. Megan Gable) and dietitian (Elizabeth Bonaccorso). Last visit, the dietitian was not in, so this was our first visit with both of Timmy's nutritional care team. They were both very helpful, very supportive and we exchanged a lot of information. We let them know what we have been feeding, what Timmy's feed schedule looks like, and where we are trying to head with his feeds. They gave us direction as to where to head with the feeds, and things to add to his feeds to bulk up calories, to round off his nutrition, and to help things go smoother. It was another fairly long appointment and we gained a lot of good information, and got Timmy's food prescription changed over to a food based 'formula' for his tube. We will still be blending most of his food, but it gives us more wiggle room when we are running short on time or have to be away from home.

The nutritionist wanted to see blood work to see how Timmy's levels of various things were doing, and we asked if we could take care of that at the hospital before we left (save a trip for Timmy). She sent the script down and we stopped to have his blood drawn on the way out. We are not sure of the name of the woman who drew his blood, but 'Mama D' was able to pull it off without Timmy breaking into tears. She entertained and distracted him while holding his arm still and getting the needle into the vein on the first try. 'Mama D' even sang "hallelujah" as she entertained Timmy. The results were available this morning, and most of his numbers look good, at least in my untrained opinion. A few numbers were 'off' but I'm not sure what those mean, exactly, and often the off numbers were met with "We're not worried about those" in Timmy's case. We'll see what the official word is as the doctors look over the results.

Aside from crazy traffic on the way home, it was a good day and we are grateful. Mom & Dad Hadley came down so we could head up with just Timmy this trip, so the rest of the kids had a great day as well. They were still chatting excitedly about the events of yesterday with grandma and grandpa this morning. Yes, we know we are blessed. We feel it often and know our blessing exceeds our needs.

A Week of Appointments

Today started our week of appointments for Timmy. We are in the midst of 3 weeks of appointments for dentists, chiropractor, and eye doctor visits for the family, but Timmy started his big week today with seeing his cardiologist. This was the first cardiologist appointment in just over 4 months! 4 months! We're pretty excited about that. We're also pretty excited about having another good report from the cardiologist. Nothing has really changed - which is a really nice blessing when you have health conditions like Timmy.

Over the past 4 months, some questions had been building. Not life-or-death questions, but musings we had. The big question was how we would know when it was time to adjust his medications (as in increase dosages). The cardiologist increased 2 medications very slightly for us to try, and then suggested taking another medication away! (With the hope to take 2 more away in the next several weeks if this one goes well) 

If you had asked me which one we should do away with, I would have picked the chlorothiazide (Diuril). Several reasons: 1 - the insurance only covers a form of the medication not being made currently, and this one costs $55 a month (not earth shattering, but not just pennies), 2 - the mixture they make of crushed up pills in water does not stay mixed well, even with twice daily shaking, 3 - it always runs out ahead of the 30 days it is supposed to last (because of sludge left in the bottle that won;t mix back in with shaking). Without knowing any of this, the cardiologist told us he wanted us to try to go without the chlorthiazide. His reasons were: 1) Timmy is healthy now and doesn't need 3 diuretic, 2) this one pulls more electrolytes out of the body. I like his reasons, too, but it feels nice to be moving toward a few less doses a day. From 9 medications down to 8 as of today.

Timmy was celebrating the good news by banging out some tunes on his piano.