May 14, 2013

UPDATE (5/14/13)

Beckett has had another good day today. He had a little rough patch through the night where they said he cried for about 45 minutes, therefore causing him to go up to 50% on his oxygen. He was at 34% when I left last night. However, when I got there, he was down to 46% and they were taking him down slowly. When I left this evening (I was able to head out a little early because he was sleeping), he was again back down to 34%. So we are continuing in the right direction. He was awake for most of the morning content and playing. He was so full of smiles today, and his nurse kept saying he was flirting. He was just so happy. Of course he has little bouts of fussiness, but he is five months old after all. That is incredibly hard to believe in and of itself. Anyway, he has had a very good day. Since he was up most of the morning, he slept most of the afternoon. He was awake for about an hour this evening before he again drifted off to sleep.

I was able to get away for a few hours today and spend time at the mall with my mom and sister. I haven’t been shopping since Christmas, so it felt a little strange, but was definitely a nice change of pace. We enjoyed Chick-fil-A milkshakes, and my sister treated us to having our toenails painted. It was good to spend time with them in the normal world. Not too mention soaking up some much needed vitamin D.

They also had an Indy 500 party at the hospital tonight, so while Beckett was sleeping I ventured down, just to get out of the room for a little while. It was actually quite nice. They were giving away tons of free things, had an Indy car outside, and even two drivers were there signing autographs, one of which has a son just a few weeks older than Beckett. I was able to get him some nice souvenirs that he can have with the rest of his keepsakes from this journey.

I also spoke with the cardiologist again today. He said Beckett is looking great, and that his color is really good. He thinks we may need to add another med and then start pushing him a little. He said Beckett is doing well, he is just moving very slowly. This part is not news to us, as we have always known Beckett to like things slow. So, we will see. Right now he said these are just things he is thinking about, and he isn’t going to force us to do anything. Also, the coarctation of his aorta has come back a little, which really is no surprise, so that is something that will probably get fixed when he has a heart cath before the next surgery.

So that was today. Just calm, quiet, and exactly the way we like it. We are praying that each day gets a little better than the last, and are grateful for each good day we have with him. His life is truly a blessing, and God has given me the greatest gift in Beckett. I could not ask for a more precious son.

— with Jonathan Rupp at Riley Hospital for Children at IU Health.

One thought on “May 14, 2013

  1. Sharon-Crigger-Stokan says:

    Thank you, God for these calm and quiet days for Beckett and his family. Continuing to uplift you all in prayer and ask God for a miracle for your son. Keep hanging in there and we’ll keep praying!

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