Transplant Day 75 and eating

If I had to pick a word to describe the current focus of our days it would be: food. Patrick has always enjoyed food, but also seemed to know that it didn’t sit right with him to eat much, and so he always reigned himself in pretty well. But now that he has his “new belly,” Patrick has a renewed and kind of voracious interest in food.

Yesterday, we started our outpatient time with morning appointments. We got up early to be ready for Patrick’s morning nurse visit and blood draw. (We do this twice a week to check his nutrition and medication levels.) This is a pretty big feat right now. Instead of being able to put Patrick in a tub while I get things ready, right now he needs a sponge bath and the dressing on his ostomy incision changed.

We had an 11 a.m. appointment with an occupational therapist who also does feeding therapy. I needed to call to confirm that the plan really was to see her, because of some confusion as we went out the door on Friday.. and when that call was done, our time was pretty short. Patrick likes to start his day by sitting down and chewing up a couple of slices of ham. He eats for about an hour. And we didn’t have an hour.

So I tried to sweeten the deal. I promised him we could eat out. I’d take him to McDonalds for pancakes. (Note: this was previously one of our favorite mommy/son dates.) Nope. Patrick threw what I think was the first all-out tantrum I’ve ever seen from him. He wanted his ham.

Once he calmed down, we went to McDonald’s anyway. I talked them into giving me some of the ham from the McMuffin sandwich in place of the sausage in the Big Breakfast. He had both ham and pancakes, plus some powerade (which was a splurge).. and he forgave me.

The appointment was interesting. He was all over the place which made it kind of hard to work with him. She did some testing of his fine motor and attention skills, then we talked about food. She explained that she uses a sensory program designed to help kids become brave enough to touch, taste, smell and otherwise explore food. I told her we might already be past that. But we decided to give it a try to see if it would help. And we set up bi-weekly appointments for the next month. (This is terrifying to me. It will burn through Patrick’s therapy visits in no time at all.)

Anyway – once the appoint was done, we came back to the Ronald McDonald House for lunch. This time, soup. Chicken broth is one of Patrick’s biggest go-to foods. He eats at least a cup a day. And he dips at least 4 rolls of slices of bread in it while he eats it. This also can take up to an hour.

Patrick happily came back to the room to play for a little bit in the afternoon, giving me time to get a few phone calls made. (Working on setting up some respite care that we have qualified for once we get home… I’m going to need to hire someone to do this and finding the right person seems like a very intimidating idea. But we’ll get there.)

Then, it was time for school. Patrick did great this time! Would you believe that his teacher can tell him specific letters to write and, although sloppy, Patrick is making the right shapes for them? They also worked on reading a book and some counting and sorting activities. I think it was our best school day here yet.

After school, we had snack time. Thinking that Patrick needs to go back a little bit in food demands and start where babies start learning to eat, I’ve been trying out different big-kid flavored purees. I introduced him to guacamole and he actually really loved it, so we have some for snack every day. And when we ran out and he still wanted to eat, I grabbed the next in the “new foods” category and pulled out a jar of SoyNut butter.

Patrick’s allergic to peanuts and therefore peanut butter, but insisted this week that all kids need peanut butter. So when we found a good allergy-safe department at a grocery store this week I picked up a jar of low-sugar soynut butter. That sounds pretty unappetizing, but I actually liked it better than the Sunbutter (sunflower seed butter) that we tried last week. The taste is pretty similar. And he really liked it.

In fact, after exploring dipping teddy grahams in it for a while, I mentioned that my family has always liked peanut butter filled celery. Well, Patrick wanted to try and I happened to have some celery. Not only did he enjoy licking the soynut butter out of the celery, but then decided to try out taking bites of the celery and chewing it up, too. This is kind of huge from an oral motor skills standpoint.

We ended snack as the dinner group started to arrive to cook dinner. Patrick loves being the welcoming committee for the house and made friends quickly. But we didn’t stay in their way too long. One of the women from church who came and sat with Patrick last week came again last night to play with him. I was feeling caught up enough to stay and get to know her a bit while we played. She brought walkie talkies, which Patrick loved. (And it kind of helped because when he’d sneak away, I could ask him where he was or call him back. I kind of found myself wishing I still had them again today.) Patrick laughed for the whole hour she was here. He really needed that. So did I. And we were excited to find we share a love of hockey. And then she left and we went to dinner.

For dinner, we are a bit at the mercy of what the dinner groups choose to make for us. I’ll make Patrick alternatives but am trying to teach him to try different things that are served to him. Well, last night he just wanted the ham that I’d shorted him for breakfast. After much negotiation, we agreed that if he’d try the spaghetti they’d made, I’d let him have ham. He took two bites and then settled in with his ham.

But of course, just as we started clearing up plates, he asked for spaghetti again and sat down and licked the sauce off of a whole bowl.

We stayed up a little late last night talking to Daddy because it had been too many days and we really missed talking. We didn’t have committments this morning so I figured we could afford to sleep in.

I accidentally woke Patrick sneaking away to go to the potty this morning instead of snuggling with him. So we got up anyway. He really kind of needed a bath anyway, so I went and set up his sponge bath.

But, just as I got him naked, even taking the dressing off of his incision, the fire alarm rang. Talk about bad timing. There we were trying to get a dressing and diaper and clothes while they were banging doors telling everyone they really did need to get out.

By the time we got downstairs, I could see a group that was maybe from the house being led away somewhere far across the parking lot. But I was in PJ’s and Patrick was in an assortment of fleece I’d thrown on him and we were wrapped in blankets and if I was wrong about them, then I’d be crossing the parking lot carrying him (it was so loud he couldn’t settle down to walk) in the cold for nothing. I had grabbed my cell phone, but not my keys so we couldn’t get in the car. I looked up and saw a fire truck approaching and decided that was the better place to go wait.

We walked around front and the firemen came over and brought Patrick stickers and offered him the chance to look in their fire trucks. (He said thanks, but no thanks.) And then, once they had cleared the building, they let us go wait inside. It turned out that some water had leaked and set off the alarm somehow. I really hope they found and fixed it so we don’t have to evacuate every time that room showers. But if we do, I learned a little more about what to bring along and where to go.

The morning schedule was all thrown off. I gave the really time-sensitive medicines, but left some of the others for later. I properly changed Patrick’s surgical dressing and his central line dressing, too. I showered and we got dressed. And then today, because right now 80% of the families staying here have someone staying at the hospital and the house was quieter than usual, we did a laundry morning. We washed the dirty clothes plus most of the linens.

We came back to the room and used some index cards to make a letter and word wall. As Patrick is introduced to new sight words, we’ll add them to the wall under the corresponding first letter. He loves going over and reading me his wall.

Then, Patrick needed out of the house, so I decided we’d take an outing to the dollar store. He carefully considered all the things he could buy and chose a jumbo calculator. I picked up some new scissors for him and some bingo daubers to use in place of do-a-dot markers in some mommy school work.

Then, we decided to go check out the grocery store in the same parking lot. (We actually drove a ways to go to the dollar store.) The store was a big win. They had kid-sized shopping carts which is one of Patrick’s favorite activities. They also had all of his biggest needs.. ham and chicken broth and single serve guacamole and rolls.

The late night and early morning left Patrick in need of a nap. (Because otherwise, he was just being naughty… especially in that he kept sneaking away from me and going to visit people on other floors of the house.) He slept till 6, when I woke up for dinner where he ate his first choice, chicken broth, and then some guacamole (also known as mokily-mokily) because he “loves it so much”. And now we are staying up late watching Blues Clues because going to bed on time is pointless when he naps late.

Tomorrow, I hope that we will actually succeed in sleeping in. And then we’ll eat some more old favorites and new foods and have a little bit of school, too.

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