Let's see ... Manny was discharged only to have to turn right back and within 24 hours be readmitted. During those hours home, he was struggling to breathe. A storm went through and knocked out our power. All his other machines have battery back up so it never occurred to us that his bipap wouldn't. It didn't. By the time it came back on, we were under a tornado warning. It was a long night. By morning he was coughing up blood. So back to the hospital.
The blood turned out to be from his ENT area (best case scenario). But his chest xray was markedly worse so they deemed it pneumonia and started him on IV antibiotics. And sent us home.
June 26 was his 4th birthday. For someone who was told wouldn't live to see one ... this was a huge deal. I tons of pictures from the day but here are just a few.
|NOT a fan of wearing the ears! LOL|
|His shirt has the same face on it. He calls it his "Silly Face"|
|When you can't eat the cake, you get to blow out the candles. Over and over and over.|
July 7 was Jacob's 15th birthday. We did "low key". He got some money and that combined with what he'd saved and he got an ipod touch. He's thrilled.
Had a fun trip to Busch Gardens. Had no clue Zoe was such a great hula-hooper! There was one point where she was hooping with 3 hoops while patting her head, rubbing her tummy while turning in a circle. I was so impressed!
Then Family reunion. We drove up to the North Georgia mountains for a week stay with Dan's sisters and parents and their families. It was 10 adults, 12 kids (including two who were born just this year). Huge house. Lots of food and laughing. There was a cousin and his wife who were able to join for a couple of days. Everyone was healthy. Great trip.
During this trip though, it became apparent to Manny just how different he was from the other kids. They would be sitting playing a game and so Manny could be in his chair on the floor participating with them. When they'd be done they'd jump up and run up the stairs or down the stairs to play a different game. He was often left sitting there. No one was mean. He wasn't super sad. But he noticed. He's a trooper so he got over it quickly too when he would be upset. But as his Mama, I wished I could just take his place in the chair and let him run all over.
Manny has been out of the hospital for over a month! It's amazing. We credit a lot of that to the bipap. He is doing so well on it. Helps him get over even the beginnings of a little cough. SOOOO relieved to have that.
There are a couple of things that are not going quite right is his weight. He's up 25% of his body weight since mid May. They're adjusting his TPN down as best they can but he's already at below bare minimum for a lot of things. So not much more room. Not sure why his weight just suddenly jumped so much. And the other part is a concern for his liver. Not ready to go into details but suffice to say prayers appreciated for a fully functioning liver.
I've always said that if you don't hear from me for a while ... just assume we're out living life. And that's the truth for sure with us right now. We're trying to soak in as much Summer fun and relaxation as we can. Hope you are enjoying your families too!