We were discharged from the hospital yesterday afternoon! Caleb’s fever quickly came and went within 24 hours, so we are thinking he caught a small virus. When he woke up yesterday morning I could tell that he felt better. The brightness was back in his eyes and he immediately asked for breakfast… it was only 5am, but hey, I was glad he was feeling better! I gave him a pop tart, some muffins, and his iPad and tried to catch a little more sleep on the hospital couch.

Sometime in the middle of the night, before Caleb even woke up, they started a blood transfusion. His 4am labs showed low Hgb, which they were expecting, so they were ready to transfuse. It was really nice that we got this done in the middle of the night while we were inpatient, because it’s usually a long process of waiting around when we have to do it outpatient. So in this one case it was kind of a bonus that we were still in the hospital.

We had 2 appointments on our schedule for mid morning on Friday, and since we were inpatient both appointments came to us. One appointment was physical therapy, and one was his ENT appointment. It’s really nice that if you are inpatient, and they have time to come up, they will come to your room so you can keep the appointment instead of having to reschedule. It’s once again a nice bonus to have someone come to you instead of waiting in a waiting room for your appointment. Caleb had a blast playing with his Physical Therapist. I didn’t have any concerns, and neither did she. They are always amazed by Caleb’s coordination and strength. They played a little basketball, and walked all around the hallways. Caleb taught her how we play “the floor is lava” ha ha!

The ENT also visited us and delivered the great news that per Caleb’s last audiology exam, the negative pressure in his right ear seems to have resolved itself and there is no need for a tube right now. We are so relieved, as we were going to try to fit that procedure in before we left if it was needed, but now we will just re-examine him in 6 months to make sure everything is still good!

Caleb played the rest of the time while waiting to be discharged, but then we had one last hurdle, and that was getting Caleb’s immune booster shot that helps his counts recover. He is not a fan of shots, and knew it was coming. He looked so sad, but he was so brave and held still and I am very proud of him for that! We got it done and got to go back to our apartment!

We came home and had a restful afternoon. Since he woke up at 5am and had been playing all morning since we left the hospital, we definitely needed a nice long nap. And since I tend to not sleep well in the hospital, I took a nice long nap with him too. There is nothing like being back in your own bed after sleeping on a hospital couch! And I looove laying next to Caleb, listening to his deep rhythmic breathing. He’s so cute when he sleeps!


Tyler was so excited to see Caleb when he got home from Summer Camp! He showed him all of the pictures he made for him while he was away and it made Caleb feel very special! Tyler was so proud!

Today was Saturday, and since Caleb’s counts are starting to drop we played it safe and stayed home. We really don’t want to risk having any more delays with his counts recovering, and us being able to go home! We spent the day playing games, watching a movie, and erupting “volcanoes” using baking soda and vinegar! It’s hard for all 4 of us to be in the apartment together ALL day. There are inevitably fights over toys, and no moments of silence for James and I, but all in all the day was good. Everyone keeps telling us we’ll miss this small space, and how close we are together in it… I say bring on my swimming pool and more than one bathroom, but we’ll see… leaving will be bittersweet.

So, tomorrow is Father’s Day, and we will probably do more of the same, plus celebrate James. The boys have a few little things to give him in the morning, and I’m sure we’ll make him breakfast as that seems to be a tradition on special days. It definitely feels amazing to know that there are no more (planned) inpatient stays ahead of us. We are done! We just have to wait for Caleb’s counts to recover and have a final set of scans that will hopefully take place on June 27th (that could get delayed if Caleb’s counts aren’t up yet). But we basically don’t have any major road blocks that we know of that will stop us from being home very soon. It’s a strange but wonderful feeling to know we’ll soon be parting from this way of life, and trying to return to what we knew before. It will take some adjusting, as moving here did as well, but we’ve been dreaming about this for 9 months and it’s almost here!


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