Macsen had such a great day - great few days actually. He is all better from the virus he had and he hasn't vomited in days. He pooped. He's been using his little potty like a big boy. He's been playing constantly- he runs everywhere he goes. He has 2 speeds - FAST and OFF. He crashes when he's too tired. He lies down but keeps playing - rolling his cars or trains 3 inches in front of his face on the floor while he takes a break. I'll have to get a video of him tearing around the house on his tiny baby ride-on. His legs are long enough now he can fishtail it around turns, carry it up the 1 stair we have in the house, and turn it around 360 degrees. He rides it from one end of the house to the other - though tonight when I went to check on him while he slept his ride-on was replaced with his giant dump truck. Aaron gave him a ride all the way to bed. He had a few good nights of sleep - but the last few have been not great. He's been cutting out his nap too - darn it- but because he has been happier during the day I can actually get some work done around here.I usually spend my day carrying and cuddling him - reading him books and just lying down, tickling, singing songs, to keep him happy. But today I got to vacuum my bedroom while I chased him around on his little ride-on, and clean my bathroom. Woot! Crazy I would be so excited about that but it felt good to clean and he wasn't crying, holding onto my leg which I cannot stand for very long. He's just too pitiful.
We had to get him shoes with a built in squeaker because his new favorite thing is hiding - mostly when we are out in public, like a crowded store. He is a prankster and just trying to make us laugh but it always gives me a heart attack when I look up and say "Where is your brother?" and the girls say"He's right over..." and then silence. So with the squeaker baby locator shoes he can no longer hide. Score 1 for mama!
He had a cardiology appointment and endocrinology appointment last week. His cardiologist in Pensacola was very encouraged with his heart function - she said it looked improved from his last echo he had in November! They were able to get a blood pressure reading - he usually squirms and cries so they give up after a few attempts. His heart rate has come down - I had to call her a few weeks ago because it was in the 80's. I have NEVER seen it lower than mid 90s and that was while he was still coming out of sedation. This new medicine he is on is really helping I think.
He has grown a little - he is 31.5 inches tall. Still not on the growth chart for height but his weight for height is in the 50th percentile. He's not malnourished which is always my fear with his lack of interest in any food but milk. The endocrinologist mentioned growth hormone but didn't really promote it which is fine. It is something we can talk about later - after his 3rd surgery and when Macsen is older and can handle daily injections, if we ever even go that route. There are some doctors that think GH and heart kids shouldn't mix - too many complications. We don't need that.
Carys did a wonderful presentation at school on Helen Taussig, founder of Pediatric Cardiology. I am so proud of her and her sister. When we first found out about Macsen's heart I was so worried about the obvious things - will he live, what will his life be like. But my other main worry was what will this do to my girls. And I shouldn't have worried. They were always sweet and caring girls but they have grown into fierce advocates for their brother - more compassionate and empathetic for all they have been through. Stronger. I couldn't be more proud of them.
The spaghetti dinner is in 1 week. We now have help from a local Junior Civitan group who have been going around town soliciting donations! So sweet. I can't wait to meet them all and thank them. We have sold quite a few tickets also so it looks like the dinner will be a success. So grateful for everyone that has helped us this time around.
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