Happy Anniversary, Timmy!!!

If you've been following for long, you know the anniversary isn't because Timmy is married, but because Timmy came home from the hospital 1 year ago today. What a difference a year makes!

I look back at last year's posts and I see what I wrote, but I also remember what we felt. We were excited to be coming home, but we were also overwhelmed at the responsibility we were taking on. We were anxious over whether Timmy would even make it through the week. We were even slightly terrified by what lay ahead. We were low on sleep. And we were a little tense. If you know us well, you may be able to see all of that in the picture of Jen holding Timmy at home a year ago.

It took a while for the tension to lessen. There was a month or so of sleeping on couches in the living room. There were to-do lists to be prepared for what would come next. Even getting family pictures taken was tainted by "This could be our last family pictures with Timmy." I talked to the people at the funeral home. We bought cemetery plots to be ready. But slowly, the tension has faded.

The tension today is a different tension. In a way, we are still overwhelmed at times. There is still apprehension (isn't that a great word to use instead of saying 'fear?') over how to move forward with the new normal in our lives. And, yes, we love the new normal! (Timmy still with us and growing and developing) We wouldn't trade it for the expected outcome we were given at the hospital. We know we've been blessed beyond all expectations that were given to us, or that we had on our own. God has been very good in even giving us this milestone! And we'll take every other milestone He gives us. Today's tension involves a regulated feeding schedule, medication schedule, therapy schedule and a regular schedule of throwing up what we feed him. It involves cleaning up an insane amount of outfits, burp cloths and blankets from when he decides to not keep his food down. It involves a lot of effort to do things we used to take for granted. But, in a sense, it is a good tension. One that blesses and frustrates at the same time.

I'd like to say that the past 14 months has prepared us to be ready to face whatever may come, but I know that isn't true. What I can say is that God will prepare us to face whatever will come. Why? Because I learned that life had not prepared me for the last 14 months, but God met that need. He prepared us, He walked with us through it, He provided daily for what we needed and much, much more.

So, Happy Anniversary, Timmy! Please know that we are blessed to have you in our lives.

Another good visit with the cardiologist

We only go every 3-4 months anymore. There aren't as many tests run, either. They check his weight, his oxygen sats, and the doctor checks him over and listens to his heart. 

I remember going to cardiologist visits hoping for a new test result, hoping for a change in Timmy's heart that would allow for a surgery. While that would have been nice, we've learned to enjoy the incredible answer to prayer that was different than what we were asking for. I often marvel at how often people answer another person's question by answering a different question. "What do you want for dinner?" "We had fish for lunch." It may answer the question, in a weird sort of way, but it comes from anticipating why the question was asked. Often, the answer doesn't actually answer the question. In this case, we asked God to heal Timmy's heart. His answer has been "He's doing just fine." In this case, the answer to a different question answered the question behind our request to heal Timmy's heart. Our desire was that Timmy would be OK. God's answer has been that Timmy is OK. A different road to the solution we really wanted. We are blessed. Today, the cardiologist told us about another patient who is similar to Timmy, but with more 'problems' in his medical file. This other child, with sats lower than Timmy, is an active teenager who plays basketball. I don't know what life will look like for Timmy, but God keeps reminding us that His options for Timmy are more than the doctors can see, and more than the sum of his diagnoses.

The outcome of today's visit? Well, we got rid of another supplement, we're going to change out a diuretic for a once a day medication (instead of 3 times a day), and we're dropping to just two times of giving medications a day. We left the hospital with 6 medication times a day, we had dropped to 5 times, and are happy to drop down to twice a day meds.

And as always, doc says Timmy looks great!

We are blessed!

Memories

A year ago. It seems so far removed from today, but the memories are still relatively fresh.

Today was the original date scheduled for Timmy's heart surgery.

It became the day we met with the surgeon to hear him say that surgery wasn't possible.

He also told us Timmy would likely not survive the winter as a cold would probably kill him.

But, here we are, 12 months later.

And today, we go meet with Timmy's cardiologist.

We've stopped wondering if maybe this appointment we'll hear that surgery is possible.

We've stopped wondering if this appointment might result in him going back to the hospital.

While not nearly so earth shaking, we're hoping to adjust some medications today.

Other than that, no worries, no hopes. Because our son is still with us, and that is better than any news the Doctor can give us. We are blessed, and even celebrating this anniversary by remembering a year ago, is a pleasant thing to celebrate.

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.