I am happy to report that Owen has made a major turnaround once again. He was so miserable and we have no explanation but he feels SO much better! Yesterday morning he woke up and said "I feel so much better!" He drank Orange Juice and powered through his school work. He is loving using the typing program and is a whiz on the keyboard. We got his electrolytes in check after dropping TNP and his other levels are back to norm. We haven't had to adjust his Milrinone and he remains on .25 which is pretty amazing. He had some big weight drops over the weekend but yesterday and today he has slowly gone back up by .1 kilos each day.
We discussed starting him on Marinol (synthetic marijuana capsules) to help with his nausea and increase his appetite. He is already on Periactin (appetite stimulant) 4x a day, which is not a small dose. Today he ate two bags of Jalapeno chips and chugged water. He seems to be tolerating his tube feeds, but I haven't pushed him too much. I think we are all pretty impressed.
Today was his PICC line dressing change and he wasn't nervous one bit. He chatted with the vascular team the entire time and acted like it was no biggie. He is so tough!
We walked more than ever this afternoon. We lapped the first floor, walked in the atrium, walked the entire 2nd floor and then lapped the 3rd floor. He was exhausted when he got back here, but I was so proud of him!
He has been doing a ton of reading for school and retains just about everything he reads. He learned all about Ancient Egypt and we learned about Organisms today. He can pretty much ramble every fact he read about... it's like his brain is a sponge. I forgot half of what we read so I'm impressed.
Mr Logi man has been busy at home. He has been clinging on Daddy and Sis a little more than usual and he can't get enough of his Mama's pictures. I wish I could just scoop him up and love on him all the time. My heart is aching to have my family back together... it's been 12 weeks today.
Shout out to Max and his family for the awesome Lego set. Owen loves it and has been playing with it non stop. Each day passes and a new one begins. We can do this...
4 comments:
So good to hear that he's having some better days! I'm continually amazed and inspired by how your family has handled all the upheaval in your life the last 12 weeks. It's so hard and you are so strong. Always good to see a smile on Owen's face. He's such a miracle. Prayers for the right heart to come and that you get to see the rest of your family again soon!
So happy to read this happy news! You and Owen were heavy on my heart this afternoon so I stopped what I was doing and said and extra prayer! Hugs to,you all
So happy to read this happy news! You and Owen were heavy on my heart this afternoon so I stopped what I was doing and said and extra prayer! Hugs to,you all
Have you thought about using your local library for some school. You can get books on hold so Oweb could go online with you and pick out the ones you want. First you would need a library card and account but that should be no problem. My oldest is a huge fan of all things Rick Riordan, fun fiction source for Greek gods!!
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