Ben doesn't have OT this morning so he's in the playroom with Nora-Lee. This is the first time that I felt that he was comfortable enough for me to leave for an extended period. Before, I would leave for 5 or 10 minutes but come right back.
After having my shower, I am now hanging in the family room blogging. Since I have another hour before his PT session, I thought I'd give you more information about what it's like to spend an extended time at Shriner's.
1. The food situation for Ben - This was probably the thing that had me the most worried before we got here. But it's turned out surprisingly well. All Ben's meals are of course covered. So his meals show up at 7:30, 11:30 and 4:30 each day. Each day, the dietician brings me the menu for the following day. I look through it and make any changes that I want. There is a whole other list of foods that are always available so I can make substitutions quite easily. I do have a small issue with the dietician. As most of you know, Ben has an egg allergy. We also don't allow him to have nuts or shellfish as these are considered "highly allergic" foods. As we were going through the menu one day, I asked the dietician if the fish sticks or chicken nuggets have egg in them (many do but some don't). Well. She wouldn't even consider giving him those because they go in the fryer and there is no control over what goes in the fryer. To me, that's a little over the top. We go to restaurants ALL THE TIME. Ben has french fries EVERY SINGLE TIME. Who knows what goes in those restaurant fryers?? But it's never affected him. I tried to explain this, but she wouldn't even consider it. I'm leaving the issue for now, but if needed, I'll push the issue some more.
2. The food situation for me - Of course, my meals aren't covered. So I need to sort those myself. There is a cafeteria on our floor. And it is surprisingly good. Every day there is soup and a salad bar and then 2 hot options. Plus, lots of fruit and desserts. And it's SUPER CHEAP. There is also a fridge that parents can use to store items and a microwave. Before arriving, I really thought that I would get groceries and prepare a lot of our food myself. Well. The food at the cafteria is good and I usually end up eating the rest of Ben's meal, so it just doesn't seem necessary or worth the bother.
3. The laundry situation - Thankfully, there is a laundry room that we can use. I was pleasantly surprised to find it very close to me room and FREE. So laundry is extremely simple.
4. The bathroom situation - This is a strange one. Ben is in a double room. But we are the only occupants (thankfully). There is a full bathroom attached to the room. BUT. That bathroom is "technically" only for patients. I'm not even supposed to pee in there. Although I was told that that rule was overlooked at night. There are separate bathrooms for parents. Which are tiny. And the shower curtain sticks to me...which totally grosses me out. But oh well. I'll survive.
5. The nursing situation - I love nurses. I really do. And they were awesome at the Children's Hospital during Ben's recovery. Just awesome. I loved all of them but one (and that was just really a personality thing). I like the nurses here too. BUT. They are starting to drive me a bit crazy. I honestly think that they don't have enough to do here. The kids here are not sick. Most of them have had some type of surgery and are here for rehab. I understand that they need to check on Ben on occasion to take his temperature, give him his meds (although we are done with that now), etc. But they are continuously trying to help me dress him or give him a sponge bath or take him to the bathroom. He's 4. He wants his mommy to do those things. And he even wants privacy when he does those things. And I want to do those things for him. What else do I have to do every day? That's my role.
5. The video situation- I have had a few requests for videos of Ben's progress. I am trying. It takes FOREVER to load a video. I think I'm going to try to take shorter ones to see if I can manage to get one to load. So far, I am getting nowhere (I've had one loading to youtube since last night and it's still not done).
So there you go. The nitty gritty details of what it's like to spend time at Shriner's.