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Getting Stronger

 Sorry it’s been awhile since my last post. I ended up with a stomach bug that left me wanting to sleep a lot.  I’m feeling better today, just have insomnia again. 🤦🏻‍♀️

Pax is doing great. We are still doing 2 hours of school a day. I transitioned out of his classroom this week but remain on campus. I’ve been helping in the library this week which is a nice change of pace. I see a lot  more familiar faces in there and people have been so kind. I had 3 separate people say some very kind words to me that I really needed to hear. I’m still struggling with some depression and anxiety and the kind words mean the world. ❤️

Pax is still doing PT and OT once a week and speech twice a week in the private sector. No school services have started (that could be a whole other post but I’m trying to stay positive). He’s really getting stronger with every session. At PT he is learning to ride his scooter again which is super important for him to master before the weather gets nicer. In OT, he’s learning to tie his shoes, master buttons and zippers, and trying to write with his right hand again! He’s loving his speech therapist and is determined to get his speech back. 

We are headed to Denver Monday afternoon. We have appointments and labs on Tuesday and he will have his sedated MRI and angiogram Wednesday morning. It sounds like we will spend Wednesday night at the hospital for observation. We are really hoping for answers to why this all happened and most importantly, to make sure it doesn’t happen again. If there is a clear problem and solution, he will have neurosurgery while we are there. There’s a chance it could take more planning or no surgery at all. I will post as soon as I know more.

I took Pax to the park that’s just down the street yesterday. He’s really been wanting to see what he can do there. He was able to do a lot of things, but we also have a list of activities he can’t do on his own yet, but we will work on them. He pointed out the swing he was on when the stroke symptoms started. That hurt my mama heart a lot. He tried the other swing and was able to do it on his own. We were pretty excited since this was a big goal he set before we left the hospital.

Bray is doing good. So far his ear is healing well, and we are hoping it continues to do so. He helps his brother out a lot with things which is so sweet to watch. We’ve been playing a lot of family games and spending time together.

Photo credit goes to Brandon this week. We all know there’s no way in hell I’d allow Paxton to try this move! Thank you all for the support. Have a great weekend.

Janell




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