Tuesday, November 21, 2017

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.

Friday, November 3, 2017

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!


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.