July

Summer is already flying by and we finally have the hot weather to make it feel like summer. Oliver did get out of the hospital, I just didn't update after he left. They never did figure out if he was having seizures, so the mystery continues. We have had a really good month after the hospital stay. Yesterday we got the feeds to the highest they have been since before hospice entered the picture. We are realistically optimistic! Oliver's tummy has shown us many times that it will work really well and then shut down two minutes later. We would love to get him a little bit bulked up before the fall comes and the battle of the viral season approaches. Right now he does not have a lot in reserve to get him through a lot of sickness.

We thought his port site was infected so we went into Gillette expecting that we may be there for a few days, but the news was good. He has a little blister-like spot that looks super nasty but is nothing we need to worry about. We were so happy I could have kissed everybody in the room! I restrained myself, but am continually reminded that the doctors at Gillette are, in our mind, many steps above any other. Oliver has always been treated like a regular kiddo there. I don't remember ever getting the "pity look" from any staff there.

The girls are loving the weather and are both little fish at the beach. Cora will just crawl in and, so far, has no fear. Saturday we had a four hour period where we did not have a nurse. Since we have 24 hour nursing there are very few times during the day that it is just us. We LOVE our nurses and would be lost without them, but it was really nice to have a moment with just us. We hung out in Oli's room, he was on the floor and played Barbies with Adina. It was forced, but Oli didn't seem to mind, Adina even let him pick his own Barbie! We just listened to music and I tried to suck in every minute and tattoo it in my brain. We didn't go anywhere fancy, we were just together, happy as a family with a 4 hour break from everything.

Adina giving Oli a thorough exam


Barbie time



Cora likes to dress up


Kisses for big brother!


The girls both really love to be with their brother. Cora especially loves it when Oli is in his little chair so she can be right there. She also likes to crawl into the chair with Oli, unfortunately the chair is only made for one. Oliver loves his sisters! His all time favorite thing is the world is when Adina sits by him and plays with his arms and moves them to songs she makes up. He is happy and getting range of motion all in one!


By the way...It is that time of year again. Yes, we are moving again! We did not intend on leaving this house until John was done with school. Our unit is being sold and we need to have a solid plan. Not knowing what the new landlords will want to do with the place we are going to live at the Seminary until John is done. We need to have a plan because with Oliver we cannot just pick up and move to any place. What can I say, we are Nomads! We will just make the best of it!!