Physical therapy.

The good news is that William passed his OT evaluation. The disappointing news is he did not pass his physical therapy eval. I was fairly surprised because he is sitting on his own and already trying to crawl. However, he isn't bearing weight well on his arms, not straightening his legs, not Rolling over, amongst other things. The only thing I knew about ahead of time was that he didn't roll over. The rest was news to me. So, every day we will work at home, and we will go to pt once a week. It could be worse, for sure. I was just so sure he would pass.

Busy week!

Will had a busy week and more to do this week. We still haven't heard the results of his OT evaluation. His pt eval is tomorrow. Today, we had photos done with inspiration through art through Tausha Ann photography. If you're in the Nashville area I highly recommend her! We had lots of fun and the pictures looked great on her camera screen. I can't wait to see them after she edits them! Will was a perfect angel, as usual.

Yesterday we went to a pumpkin patch, and Will had a blast!

We have a cardiologist appointment on Wednesday. I think that I will always be nervous for these.

Baptism and milestones

Will's baptism went great. He was so well behaved. He say through the whole service quietly playing with toys, then fell asleep right before he was baptized (which he mostly slept through). It was wonderful to get to see family and friends from out of town.

Will has suddenly reached a lot of milestones. He is reaching for and playing with toys, and he sat unassisted at his OT evaluation yesterday. Still waiting on results for that. He was tired and not completely cooperating. Lying on his back he would not reach for the toys (even though he can) and would just wait or her to put them on his chest to start playing. Some things he did not demonstrate, I showed her pictures and videos. I don't know if they count when you do them that way but it was worth a shot.

Will is still not eating well. We are pretty positive one of his heart meds is affecting his appetite. If he gets very hungry he will eat just enough to not feel hungry (half and ounce or so) and stop. So we know he is able to eat and also associates hunger with needing to eat a bottle. That's all very good. Hopefully once he gets off some meds he will feel better.

Hi

Hi friends, not much to update. Will is doing great. He is going to be baptized this weekend and meet some of his out of town family. Hope y'all are enjoying the beginning of fall - we sure are!

Post Glenn life

It's our second weekend home after William's surgery and we are having a blast.

We had a scare the other night when one of the bandages fell off of his incision and it looked infected. We sent a picture to cardiology and they had us rush in to the emergency room. It was about 10 pm when we got there. Will's pc stayed late when she heard he was coming. She came down to the ER, looked at his chest and said it looked great! The picture made it look at lot worse than it did in person. We were home shortly after midnight. I'm sure it was the shortest ER visit ever.

Will and I have been taking advantage of our life outside of isolation! We have gone to the mall, the park, out to eat... Any and everywhere we can! It's so easy to take advantage of life and all of the things that "normal" people do. I know I never will again.

Unfortunately being in public you are exposed to people who are unkind. We have had a few comments made me uncomfortable, but I just have to shake them off. People see his NG tube and they know he is different. I wish it wasn't like that, but it is. They ask if he is sick, if he will be okay.. And I don't ever know how to answer. Is he sick? Well, kind of. Will he be okay? I hope so. Some people are not polite. I don't mind the curiosity- I prefer to educate people who want to know what he is dealing with. I wish I could educate people who say rude things, but I am not quite sure how. This is just part of our life now. Will still isn't eating his bottles well, but I know someday he will get that tube out and look just like everyone else. Until then, we will just have to tell him and everyone else how amazing he is... In case they don't already know.

Surgical follow up

Will had his surgical follow up today. His X-ray looked perfect. The only concern is that he is still not taking his bottles, but said we will give it a few more weeks before we start to worry. She said we don't have to come back for two months, but I am used to once a week so I asked if we could come back sooner- one month.

He is feeling much better. We went to the zoo last weekend and he had a blast. Will loves adventure!

Discharge today!

Wow! I can't believe we have been inpatient for a month.. And that will is done with his Glenn! Life should be much easier now. His new physiology is much more stable. We are excited to conquer the world now.. Because we are going home!