Appointment | The TaterTwins

Yesterday’s Adventures

28 Aug posted by Jayme

Ryan had a pre-op appointment yesterday- he has another laser eye surgery coming up soon. He was great- he doesn’t flinch when they poke and prod at him. And unlike Dylan, he doesn’t cry when he gets weighed and measured. He watches with curiosity while they listen to his heart, and take his pulse ox.

When they put the blood pressure cuff on his arm, he reached over with the other hand to remove it. I held his hand to prevent him from doing that again, and being resourceful, he leaned over and bit at it. He can be such a little stinker.

When it came time for the blood work, he laid on the table calmly while the nurses got their equipment together. I think he was more upset about being held down still than the actual pokes. Dylan on the other hand, freaked out- even though he wasn’t the one getting a needle! While I was helping hold Ryan still, a nurse went over and picked Dylan up out of the stroller to comfort him.

It always amazes me that with all the patients that come in and out of the hospital, the doctors and nurses all recognize Ryan, and they all love on him. When we were walking to the parking lot, there was a nurse outside on break, who I didn’t even recognize- who came running over to see him and ask how he was doing. I love that!

After the appointment, we were hungry. I thought about going home, but Cracker Barrel was calling my name. I was a bit hesitant because it was just the twins and I. I mean, I can handle them fine, but the logistics of getting in and out of the restaurant are a bit awkward without an extra set of hands. I suppose I could have brought them in with the stroller, but then I would have had to try to maneuver it around the store part and fold it up and find a place for it in the restaurant part.

But, I grabbed the diaper bag and a twin in each arm and headed in. It wasn’t so bad, especially once I got them buckled in their highchairs. The boys happily slapped the table and babbled to me while we waited for our food. I ordered them lemonade for their sippy cups and it was a wee bit sour for them… their faces were hysterical. They inhaled their carrots- yum. I love Cracker Barrel carrots… and they split a grilled cheese.

An older woman came over to ask how old the boys are and she told me she has twin boys too. She said, ‘Don’t worry dear, it gets easier’

I asked her when… and she said ‘Well mine are 55 now, it’s much easier’

ROFL

I should hope so!

Ryan and lemonade

Dylan and lemonade

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Filed Under: appointment, twins

Philly Update.

11 Feb posted by Jayme

This is probably the WORST week to be in Philadelphia, thanks to the snow. Why does Ryan’s chemo always fall on weird things? The first time, it was the World Series, now the blizzard! Go figure, we’re just lucky I guess. See what we saw this afternoon around 1pm when we looked out of our hotel room window?

It started snowing as we were pulling into the city last night, and it really hasn’t stopped. It’s supposed to be letting up around now though, so hopefully by the time we’re ready to go to his appointment tomorrow afternoon, the roads will be OK.

This morning’s drive wasn’t too bad, but by lunchtime it was getting awful. Ryan was the first one seen, so he was in and out fast. His eyes look good- last month there were three tumors on his right eye, and one is totally gone now! They did the laser treatment on both eyes, and also gave him a med that is supposed to help the thermotherapy work better.

Dylan’s red cheeks

Tomorrow and Friday he’s got chemo, but I think just Aaron will bring him in. Dylan’s been feeling pretty miserable and I don’t know what he has, if anything, but I don’t want him to be around cancer kids, just in case. They left his IV in from the sedation today to use tomorrow, so he’s got that clunky thing again. I’m glad though, because for some reason they had to poke him several times to get a line. Usually they get him on the first stick, poor baby.

But he tolerated his treatment and sedation today nicely. He slept quite a bit this morning afterward, but it wasn’t long before he was back to his happy self. That baby sure bounces back from all of this so fast! He amazes me.

Ryan after thermotherapy

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Filed Under: appointment, dylan, retinoblastoma, Ryan, snow

Here we go again

6 Jan posted by Jayme

We arrived yesterday afternoon safe and sound in Philly. Actually, we’re a few minutes outside of Philly, over the bridge and into NJ at our hotel. Semantics

On the drive up, at around 2 yesterday afternoon, we got a call from the eye doctor’s office saying they needed a copy of Ryan’s physical faxed to them by 5pm. It was the first we’d heard of it! They said they’d sent a letter to us with the form they wanted filled out by his pediatrician and info on his procedure, but neither of us recall receiving it. Last we’d heard from them was in November when we saw them, and they told us to come back January 6th. When I asked them what time, they said we’d be called the day before with an appointment time.

We were able to get in touch with a doctor at the Naval Hospital back home and have a copy of his 6 month well baby info sent over though- I’m really glad he had that done last week!

Even so, we still have a couple of issues. Namely, we don’t know when to be there! We asked the person who called about the physical form, and she transferred us over to the surgery clinic where we left a message that hasn’t been returned. Last time we were seen by them, they had us come in at 630am, and we spent half the day there. If we need to be there that early again, well, we’re already a minute late. Aaron’s trying to call them now though.

Also, I was thinking- what if those papers said stuff about not eating? I think the procedure requires anesthesia- I mean I’d assume they’d want him perfectly still to point lasers at his eyes! And I know they don’t like you eating before they put you under- but I can’t starve my baby when I don’t even know for how long. What if they don’t get to him until late afternoon?

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Filed Under: appointment, retinoblastoma, Ryan

Medical-Themed Update

10 Dec posted by Jayme

Ryan’s counts were a bit low when he got checked on Tuesday, so he has to go back tomorrow for another blood draw. If they’re still low, he’ll need a transfusion. Hopefully his body has kicked into gear and his numbers will be ok.

While we’re there getting his CBC, we have to run Dylan over to immunizations. We missed the boys 4 month well baby appointment because it was during our first trip to Philly. We know how Ryan’s doing, so I didn’t make him a new appointment- but Dylan’s isn’t until December 30- and he’s already almost 6 months. Anyway he still needs his 4 month shots, so we’ll do them tomorrow. Ryan won’t be getting any immunizations aside from the RSV shot monthly until he’s done with his chemo.

Speaking of shots, they have their monthly RSV shots on Thursday- and since they turn 6 months on Monday, they’ll also be getting the flu shot. I’ve never had one, or had any of the kids get it, but Ryan’s doctors want it done.

In other Ryan news- if you all recall, his lack of focusing and tracking was one of the symptoms that lead me to make the initial appointment to be checked out. Since then, we’ve learned that he really can’t see- maybe just shadows/lights. They said there may be a tiny bit of peripheral vision, but essentially his retinas were detached because of the tumors.

Our primary focus with his treatment is to save his life. After that, if we can save his eyes and perhaps get some vision back, that’s a bonus. In years past, they would simply remove the eyes to remove the cancer, however that leaves NO chance of vision restoration. Now they try to use that as a last ditch effort to save the child’s life.

Ryan’s eyes are pretty bad- his left eye is a Class C and the right is a Class D** and while it could be worse, his chances of saving his sight aren’t the greatest. The doctors say they think they can save some though, and that you never know how well each person will respond to treatment.

However, despite all that, I have definitely noticed some improvements! Ryan is totally tracking things now. At first I thought it was a fluke, but I’ve been having him do it all the time, and he’s been consistently focusing and following objects.

Back in October, I tried to take a video to show someone how he wouldn’t follow objects, and how he just stares off into space. Well today I took another- to show how he’s now tracking and focusing so much better- after only TWO treatments! Next month he’ll have the laser surgery on his eyes in addition to the chemo, so he’ll see the ophthalmologist and I can’t wait to hear what she says. I am hoping he’s got some of his vision back.

**Scroll down to International Classification System for Intraocular Retinoblastoma.

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Filed Under: appointment, health, retinoblastoma, twins, video

Fatties! & Other Random Thoughts

24 Oct posted by Jayme

The boys had their first of the monthly RSV shots on Thursday. They get weighed in just a diaper before they’re given the injections to be sure they’re getting the right amount since it’s based on weight. Dylan was 15 lbs 4 oz and Ryan was 14 lbs 5 oz! I can’t stand it- weren’ t they just three and four pounds?! They are only 4 months old, and they were seven weeks early! I can’t imagine what they’d weigh if they were still on the high calorie formula LOL
I love the weekends. Not just because I don’t have to get up at 6:45am to get Lili off to school, but because the girls crawl into bed with the twins and me every night and we sleep in and cuddle with and it’s just nice.
The twins and ME or the twins and I… crawl into bed with ME and the twins? Gah. It’s been too long since I’ve been in school. I think my brains need stimulation that Dora just cannot provide.
I’ve been watching old shows I DVRed ages ago. Like, back in May. Season finales of shows that started up again weeks ago… I’m so behind the times. I don’t even watch any of the ‘cool’ shows people talk about like Lost and Grey’s Anatomy. I’ve never seen an episode of either one of those.
Lili had a field trip to a farm on Friday. She came home with a big bag of HUGE sweet potatoes and wanted me to cook them for dinner. She doesn’t even like them. Neither does Mia. I am eh about them. Any suggestions as to what to do with a couple pounds of fresh sweet potatoes? Maybe I should bake and puree one and freeze it as baby food for the boys… of course I still need to figure out what to do with the rest…
The boys are starting to laugh out loud. It’s much easier to get Dylan to do it, but he smiles much easier as well. As long as his belly is full, he’s a happy boy. You have to work to get it out of Ryan, but when you do, it’s just that much sweeter.
Why are there so many catheter commercials on late at night?