On Tuesday we gave Phoebe her second shot of methotrexate, her first shot at home.
Jason thankfully was able to leave work a little early, to come home and have a bit more of an evening with us. I just hated the idea of having to stick her and then send her straight to bed.
Right before the shot, the person I was actually consoling more was Cordelia, who said that this was the worst day of her life! Awwww, poor baby. Cordelia hates shots--- the last time she had one, she wanted to hide and I had to drag her out and hold her down while the nurse did it. Pretty much the opposite of how I would like her shot experiences to go, because I feel like that's just setting you up for more trauma the next time, but, sorry kid, that's how it went down. Anyway, I asked Cordelia if she wanted to stay in the living room with us nearby or go in her room, and she decided to stay near by. She didn't have a melt down or anything, but I'm sure it was stressful.
I have talked to Phoebe about how she got a shot before and that it was a little poke and that it was medicine to make her be healthy. But in the moment, I didn't give her enough credit to understand what preparations were going on around her, because she definitely figured it all out. She heard me talking to Cordelia first about how we were going to do the shot and then she saw Jason prepping the syringe and immediately started crying. So I had to switch from talking to Cordelia to going to Phoebe, not as smoothly as I would have liked, for her own comfort's sake. So I picked up Phoebe and asked Jason to do the injection instead, because if I tried to switch to him holding her at this stage, she would have just gotten more hysterical. He was fine with that, and now we can both say that we've done it! So I held her still, but she was pretty tense. Jason usually gets a better grip on her We tried this buzzy bee product, but her leg is so small, there's not much room to strap it on her thigh and have lots of space to do the injection. I don't think we got the best fit for it, we'll have to try again.
This bee vibrates and it's supposed to be a distraction and confuse your sensations to minimize pain during injections. Thanks to my mom for sending it to me, as we have lots of shots in our future.
Here is a link if anyone needs it, or just google Buzzy Bee Injections and it should come up:
Anyway, with Phoebe getting upset, we kind of rushed just to get through it without dragging it out. After, we realized we'd forgotten to do the alcohol wipe before hand. It was still sitting next to us, unopened. Oops. We are still getting the hang of this, and trying to have everything organized before having Phoebe realize what is about to happen is going to be key. She definitely wised up faster than I was expecting.
I think it's going to be hard for me to find the balance between telling her what's happening and just holding her down and surprising her with the shot. We are going to be doing this weekly, it's so important to me to be honest with her, if I'm going to torture my baby. :(
After we all told Phoebe how brave she was and gave her stickers and toys. We all had ice cream for dessert.
Some people online have said that they are told to skip the folic acid on the day the methotrexate is given. My rheumatologist said that was not how she was trained, but it was fine if I wanted to try that.... I'm not sure what exactly is the theory behind this, nor have I seen any compelling literature on it, other than maybe it interferes with the absorption? Or that, as methotrexate strips the body of folic acid (hence needing to supplement), taking it on the injection day might just be pointless?? Anyway, I'm not sure, so I am just going to err on my doctor's side and give it to her daily. Cordelia seems very fascinated about how we have to crush up the pills. She has been telling people about it as one of the main features of describing how Phoebe has arthritis.
On Wednesday, Phoebe was not feeling super great. She was stiffer and also wobbling more in her walking, having more times when her leg gave out and she would plop on the ground. Maybe the shot was making her more off. I'm guessing last week was still more of a great day from the steroid injections, rather than the mtx. From what I've read since, mtx takes a couple weeks to build up in your system to do anything (usually at least 4 doses).
Fortunately, Phoebe took a nap before I took her to PT so she did have energy to play.
I liked the Physical therapist, Laurel, though the OT Lisa maybe had a better immediate connection with Phoebe.
Phoebe went to the swing right away. To my surprise though, it was a different swing. This one was a rectangle. You can see the square swing in the background. It's cool that they can switch it out.
Wheee!
One thing that is good for Phoebe to practice is mastering stairs, stepping up and down. The gym mats were really good for this. Laurel said to fold some towels up and have her walk on them at home.
She then played a game with Phoebe to get her to reach up high on tip toes and also squat to pick things up. She had a little magnetic bus puzzle. You put alphabet letters into a spot at the top and it would read each letter and sing. It was kind of too hard for Phoebe to put the letter puzzle pieces in, but that wasn't really the point of the activity. It was just to get her moving, but still, it wasn't as fun because she couldn't do the whole task on her own. But the thing played the "Wheels on the Bus" if you pressed a music note button, which is our girl's fav song. She loved that part. I liked how Laurel scooted the puzzle higher just a little bit each time until Phoebe was on tip toes.
Then she put it on the floor, along with it's box, and spread out all the puzzle pieces. Phoebe had to reach to her side, gathering up letters and either trying to put them in the bus or just dropping them in the box.
I let Phoebe venture out and play while I sat away from her. She did fine, but I wonder if this may also have contributed to why she wasn't quite as joyful during the game.
Phoebe then got interested in a dart board on the wall. It had magnetic darts. We did a similar game of making Phoebe go up on tip toes to get them down. She could just barely reach, I think Laurel may have actually been holding it at the right height for her. Then we put it on the floor and tried to get Phoebe to stick them on. She kept pressing the nonmagnet side down though. Phoebe also thought the darts were candles, and adorably kept blowing them out. She also said they were "hot."
I asked Laurel how often she saw cases of JIA and she said she did see it often. I asked about toddlers and she said not as often as she had in the past, but that one of her other new clients was also sent to her from Dr. B and was also a toddler. We went over my concern of how long the steroid shots would last, she said some people get them every three months. Oh man, I cannot imagine that. But she said at least now we know the steroids worked for her; some people they don't have an effect on.
We go back on the 16th, but we will see the other PT from the team, Tiffany, who we have yet to meet.
In other news, I feel I must record the continued outpourings of kindness we are experiencing from the families at school.
One family gave me a very thoughtful card and a gift certificate for a meal program.
And someone gave me an anonymous donation of $200. oh my goodness! My director gave it to me and said the mom didn't want me to know who it was from, just to have it. Honestly, I don't even know what to say! I'm just overwhelmed! Parents at school don't have this blog, but if the person should ever read this, I'm beyond grateful. I hope that when someone else is in need I can pay it forward with such kindness and generosity.
Tomorrow we go back to see the ophthalmologist, Dr. C. If she even tells us we can give Phoebe eye drops every TWO hours, instead of hourly, I will be happy. But I'm also mentally preparing for just "keep doing what you're doing".
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