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Still Working Toward Home

Someone’s had a busy afternoon!

We are STILL off the vent full time. To the point that they took it out of our room!!! Last time he used it was Sunday night. This is a HUGE deal. Not only should it make getting nursing easier, but it’s one less piece of equipment we will have to use and manage at home. Plus? He’s soooo much happier off it, and much more mobile too. He’s rolling all over the place!

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He also loves to sit. His legs are too chubby for his bumbo seat, so I found this one instead. He was nothing but smiles after mom finally figured out how to get him in.

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Today also marked his first tub bath since…. November I think it was? Because he had a PICC line in his leg for IVs and blood draws, he couldn’t submerge his leg. The PICC line has been gone for a while now, so we hauled a tub up and in. He enjoyed bath time, but was happier when I pulled him out and he got to roll around naked on the piles of towels. He really likes blankets, towels and washcloths. 😊

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In other news, he plugged up his trach this morning and gave Aaron a rude awakening. He seems to have gotten over it quickly. We had been testing out different methods of humidity since the wall bubbler he was on wont be an option when we go home.

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And on the go home front — we don’t really have an update. Waiting to hopefully hear more next week! We are definitely ready to bust out of here, and the house is mostly ready now too. We get to take him for walks around the unit off his sensors just to get used to how things will be at home.

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Unfortunately we can’t order medical supplies until we have a discharge date, so there will be a bunch of organizing soon. We also have a bunch of appointments and tasks to do at the hospital to show we are ready for discharge and to make sure we have insurance covering the things we need. Shortly we have the ducts and carpets being cleaned. I thought pregnant nesting was bad, but nesting to bring home a medically fragile kiddo – it’s hard work, and you can’t use the “I’m pregnant and can’t use those cleaners” excuses. 😜 Thank God for friends and family who pitch in. And for those of you who donated as well. Most of those funds are long gone after our near year in the hospital, but we have gift cards left that are helping along the way with these go home expenses! So again – a big huge giant thank you to everyone who has pitched in. I don’t know how we would manage to do this without you. 💕

That’s all for tonight, hopefully we will have more soon. 💕

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