Coming Home to a New Life

Four weeks ago, Caleb got a new liver.  Three weeks ago we came home to a new life, a new routine.

 

Gone are the nights of making special formula for Caleb. Instead, he drinks breast milk and cows milk, when he wants to and how much he wants. No more forcing a specified amount into his tummy. He eats when he wants now, and that is such an awesome feeling, although scary. For over ten months, we measured out his food, worrying over how much protein and calories he got. Now, we leave it up to him.

Gone are the horrible smelling medications he had to take three times a day. Now, those two medications are replaced with about seven. All but one, maybe two, of these medications are temporary. As the days turn into months, the doctors will take him off these medications, until he is down to one immunosuppressant.

Gone is the late night tube feeding. Now, we can all be in bed by 8 o'clock if that's what we want, and sometimes, that's exactly what I want.

Gone are the worries of having to feed him when we are out running errands. Now, we can just buy some milk or food that he likes while we are out.


Gone is the question of whether Caleb is getting sick, if his ammonia levels are rising.

Life is so different in our house, and it feels awesome.

 

It took a few weeks, but we finally have Caleb back to normal. Our new routine consists of medications and appointments, but they don't dominate are week. Soon, Caleb will start physical and occupational therapy. He is down to lab work just once a week. Once we get this button sorted out, we are hoping to space out his appointments to once every two weeks.

He is doing beautifully. The donor is doing awesome. We are so blessed and so thankful.


2 Samuel 22: 2-4
He said: "The Lord is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge, my shield and the horn of my salvation. He is my stronghold, my refug
e and my savior, from violent men you save me. I call to the Lord, who is worthy of praise, and I am saved from my enemies."

Psalm 100:4-5
Enter His gates with thanksgiving and His courts with praise; give thanks to Him and praise His name. For the Lord is good and His love endures forever; His faithfulness continues through all generations.