Feed the Fire for Weston

We had so much spaghetti donated for our spaghetti dinner that we were able to provide dinner for our local fire station. We did this in honor of Weston Keeton - a courageous little heart warrior who loved firefighters. He fought a long hard battle against his CHD and pulmonary hypertension and received a heart/lung transplant last year. He sadly passed away a year ago today at the age of 7 and we think of him and his family every day. His mom and dad Julie and Adam started this nationwide event called "Feed the Fire" in Weston's memory to celebrate him.  I hope you are flying high Sweet little Prince

Spaghetti Dinner was a success!!!!

Despite all my doubts and worry we had a great turn out for the dinner and more than enough help and supplies to pull it off.

We had the help of some old friends, some new friends, and some total strangers. Macsen had a ball - he was cuddled and loved on by a sweet group of Junior Civitans. He got so worn out he had to go home mid dinner for a little nap. Poor C was sick so one of our best friends stayed home with her and sleeping Macsen. He woke up and I went and got him so he could enjoy all the attention at the dinner. We surpassed our goal of $2500!!!!
 Thank you so much to everyone that collected supplies, helped advertise and sell tickets, solicit ated donations, and helped the night of the dinner making sauce, meatballs, salsa, drinks. We had people manning the raffle table, selling tickets, serving dinners, packing to go containers. The children were looked after and entertained by the Civitans - K didn't want to leave she had so much fun. We are so blessed by the people God has put in out life to help us. We are so grateful to you all. Thank you.

Fantastic Day

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.