Sunday, December 25, 2011

Merry Christmas and 16 Months Old

Merry Christmas!

Christmas with the Wieland Cousins

Hanging with Dad and Finally Growing Some Hair

Loving the Cell Phone

Merry Christmas!

We have had a wonderful Christmas, spending time with our families and celebrating all of the gifts we had before a single present was opened. We hope you were as fortunate.

Caleb is growing and developing on his own terms. He says about five words, but understands nearly everything we say. He is still not walking, but can get into whatever he wants. He will only stand on his own for a few seconds when he is distracted, but he will stand in his high chair as long as he can get away with it and will climb on anything.

Caleb has learned some new tricks. Now, when he knows that he is in trouble, you can see him make a conscious effort to be cute. He wrinkles his nose, tilts his head down and looks at you sideways. His teen years may be a real challenge!

After my last post, Caleb came down with the stomach flu and felt pretty crummy for about 7 days. After eating crackers to settle his stomach for a few days, he decided he didn't need anyone to feed him with a spoon anymore, he was going to feed himself. After a week of prodding, he will finally eat from a spoon again.

Now he has a runny nose, but I expect that at least until April. We seem to pass things from person to person in this house late spring. For a little guy with only semi-oxygenated blood and a diaphragm that only partially works, he sure can deal with a cold. Living in this house, that is a true blessing.

Caleb had his second RSV vaccine on Friday, so he is still protected against that. Dealing with the insurance company and the vaccine provider is proving to be all kinds of fun. This month it took three phone calls, one of which was over 30 minutes, but we were successful.

We are continuing to work on talking, standing and walking, but I have a sneaky suspicion that we will only make progress when Caleb feels like it!

Thanks for your continued prayers and interest in Caleb's well-being!

Wednesday, December 7, 2011

Cardiology Checkup

Caleb had his appointment with the pediatric cardiologist today and everything went very well. His oxygen saturation was 90% which is great for someone with his heart defect. I am thinking that the sensor at the pediatrician's office is not very accurate - our last couple of readings there were in the upper 70's.

Caleb's blood pressure was good and his EKG was normal for him. The cardiologist was happy with how he is looking and how he is developing. He is ok with his growth, he said that maybe he will just be a little guy.

Caleb's Enalopril was increased to adjust for his growth and he still gets 1/2 of a baby aspirin each day.

Because it has been five months since we have seen the cardiologist, we had several questions:

What is the timing for the last (hopefully) surgery?

The timing for the last surgery is mostly up to us. Most kids have the surgery between 18 months and 4 years. There are two different ways that this surgery, called the Fontan, is performed. The surgeons in Ann Arbor usually prefer the surgery that is done on younger children and that is what we assumed we would do when we left Ann Arbor last year. Now, looking at Caleb and how small he still is, we are thinking that maybe the Spring of 2013 would be best. Caleb would have another year to grow and get stronger.

Why is Caleb on Enalopril?

Enalopril is technically a blood pressure medication. It dialates the blood vessels and lowers blood pressure. This makes it easier for his heart to pump. There are no concerns with Caleb's heart function, it is just a standard measure to make things as easy on his heart as possible.

When will Caleb have another echocardiogram (echo)?

Because Caleb would need to be sedated to get a good echo (a detailed ultrasound of his heart), the cardiologist does not want to do one unless there is a reason to. Everything about Caleb's heart looks and sounds good and we are not seeing any problems at home, so there is no reason to do an echo at this time.

Things are going so well, Caleb does not need to go back to the cardiologist for six more months and we could not be happier.

While Caleb has turned out to be a textbook heart baby after his first surgery, some of the babies that we met in Ann Arbor are dealing with some major health problems. We would appreciate it if you could say a prayer for Maggie and Gabby. Gabby has other health issues in addition to her heart defect and her future is quite uncertain. Maggie has the same heart defect as Caleb and her heart did not enjoy the new circulation after the last surgery. She is in the hospital awaiting a heart transplant.

Phil and I really appreciate the love and concern everyone has shown Caleb and the rest of our family. Thank you for all of the thoughts and prayers that have gotten us to this point!