I posted about this on Facebook, but I realized I never recorded it in the blog.
My mom works as the librarian at my old elementary school.
The students, staff, and parents raised $500 for the Arthritis Foundation.
The student council gave the proceeds from their dance ($5 tickets) and their monthly lemonade stand became "Lemonade for Phoebe." The third grade "Green Team" donated their money from recycling. And all month, random parents and kids have been donating cash and checks for the Team, and a few specifically to our family, even though they’ve never met us.
My mom was at last able to get a picture from the sale... I just love it!
She also told me stories that when the third grade class came to the library with their funds, they all stood around chanting "Phoebe! Phoebe! Phoebe!"
Awwwwww. Yes, you can imagine this all made me cry!!
So grateful to my mom for going above and beyond with getting everyone involved! We felt so much love from the last month, it's really incredible.
In fact, I'm a little burned out and falling down on being a good mama... I still need to organize a little birthday party for Cordelia. She wants to have a treasure hunt in our park where she always has her birthday. I'm sorry, Cordelia... we will celebrate belatedly.
Cordelia's cold finally is seeming to be getting a little bit better today. Phoebe is coughing pretty hard. She was up in the night and needed me to sit with her for some time. I can hear her coughing more right now. I'm hoping she will have a better night as we leave early to head out to Stanford tomorrow! Fingers crossed we get good traffic and don't have to wait hours and hours!
We also have to do a shot tomorrow to stay on schedule.
Phoebe and I have been talking a lot about her experiences at the hospital. I think it's great to see what she remembers and what she thinks is important to help her process all the medical trauma she's been undergoing at such a young age.
Our conversations have been repeating since a few days ago when I brought up a specific detail, I forget why exactly. We were talking about stickers they put on her, like the two big stickers they put on her hand and elbow pit to numb them up. I also mentioned that she got a sticker on her toe (the heart rate monitor, it lights up red) and then they put 3 on her back. I forget what all those ones are monitoring, her breathing and such I'm sure, but those ones are stuck on with little clear adhesive patches. They peel right off, unlike all the tape and stuff they put to hold the IV, which needed a spray to remove easily. In fact, I was able to remove them myself--- it kind of peels off the skin in an uncomfortable, but probably not really painful way.
While Phoebe was attached to all the monitors, and there were wires hanging down from her, I was telling her that she had a "tail" just like her lovie Snuggle Puppy. Once all the monitors and stuff was in place, Phoebe was fine with everything.
Anyway, bringing up the back stickers and the tail triggered a lot of memories for Phoebe.
She points to her back and says "BACK!" except it sounds more like "BUTT!" so she might actually be saying "butt." But she knows she definitely had stuff stuck to her back there. She has been bringing this up several times.
We talk about how she had the blood pressure monitor on her leg and it would squeeze her with a hug. Phoebe says "HUG."
Phoebe says "DOG!" and then laughs hysterically. She says "UP!" that the dog went up on the hospital bed. She says "SIT" that the dog was sitting with her when she got poked. She says "OW" that she got poked when they put in the IV for her Remicade. I am trying to use the word Remicade now... I had just been calling it medicine for her arm/hand, but I realize we use the word "medicine" so often, I don't want her to associate all medicine with the infusions. She says "EAT" that Mama got to feed the dog a treat. Then she sticks her fingers in her mouth and says "AARUM RUM RUM" or something like that, basically making Cookie-Monster-gobbling-cookies -noises to say that we watched Sesame Street.
The last 2 days Phoebe has pointed at her knee and said "OW." Nothing happened involving her knee at the infusion. I also don't really think that her knee is hurting now. It doesn't look swollen to me and the joints aren't warm to the touch. I don't think she has injured herself recently. So I am finally starting to think that maybe she is remembering the previous pain she had in her knees, which were the focus of earlier doctor visits, when Phoebe was slightly less verbal. Oh my! Is that what she is communicating? So hard to know!
Phoebe and I have been going through this conversation before she falls asleep. I can see that it is important to her, and that she is trying to have a narrative that explains the things she happened. Sometimes I say things like, "Was that scary, when you got poked? It hurt, right? You were very brave." or "Your knee hurt because you had arthritis. The medicines are making your arthritis get better." Phoebe listens very carefully to all the things I say and then brings up her own one word interjections. Sometimes we talk about her getting shots, and she points to her leg. We have been playing with bandaids and Phoebe has been putting the buzzy bee on her own leg.
We have also been trying to prepare to see Dr. N, the uveitis specialist on Friday. I had emailed him a question about eye drops through Stanford's MyChart, and guess what.... no response. I'm hoping Phoebe will cooperate for him, we've been trying to practice putting our face in a cardboard box and counting to 10. Phoebe used to be only able to put her face in it for 4 seconds. I'm hoping she can make it to 10 now. But if it takes us forever to get seen again, and it encroaches on Phoebe's naptime, all bets are off. Hopefully Dr. N will impress me more in his patient care this time around, stay tuned!
ha ha ha, what you thought this blog wouldn't be there to document this huge accomplishment??
For months, Phoebe has been telling me when she goes pee, when she is lying in bed falling asleep. She says "poop" for pee, but anyway, she's aware that something comes out.
On Saturday, before giving the girls a bath after the Walk, Phoebe's diaper was still dry. She has several times peed in the tub, so I told her, "Phoebe go pee pee!" She held very still and then gave me a huge smile and the tell-tale stripe on her diaper turned from yellow to blue right before my eyes. She went pee on command.
Phoebe has also been wanting to sit on the big potty for some time, in imitation of Cordelia. She pretty much just "wipes" with toilet paper and then gets off immediately.
Well, on Sunday, after her peeing on command, when she asked to sit on the potty and I sat down with her and very seriously told her to go pee pee. And what do you know, she did! She went potty 3 times that day. I mean, always with me sitting her on the potty, but she's learning how to use those muscles.
Well, tonight, she went POOP! She wanted to flush it right away, but I made her stop so we could go and get Jason and Cordelia to show them and then we all had a big potty dance party! I kinda wanted to give her an M&M to celebrate, but she had just brushed her teeth. And honestly, everything you read about being self-motivated to potty train says treats aren't really necessary.... so I refrained. Anyway, I totally gave Cordelia little treats and 3 years later we still get into huge power struggles of when it's time to go potty. So Phoebe, you just go and do whatever you want!
Cordelia went potty quite a bit around 18 months, even pooped in the potty several times, but then she lost interest and waited until 2 months before she turned 3 to get into it. And I've potty trained with many children at school, so I have no real expectations... definitely not going underwear shopping. But it is a big milestone. Goooooo Phoebe!!!
Phoebe has finally decided to be sick. She is sooooo congested.... snotty nose and coughing from post-nasal drip. I think she and Cordelia have a virus, because I am sick with the same symptoms on top of already being on anti biotics due to the strep and ear infection from Friday! I mean, I guess it's hard to say with Phoebe, but I think she would be sicker if she had strep. Cordelia certainly is not complaining for sore throat among her symptoms and I think they have the same thing.
Phoebe slept really poorly last night, woke herself up coughing and then started getting out of bed and calling for me. I tried to leave a couple times, but she just woke up again and I ended up sleeping with her most of the night. Poor little baby. So I decided we should hold off on the mtx shot tonight.
People are kind of mixed on skipping shots due to illness. Obviously if she had a fever of 101+, don't do it. But other people say they skip if their child is sick.... or have stories of the one time they didn't skip and then their child's infection turned into pneumonia. Yikes, how do you choose? I don't know, but Phoebe was definitely not herself today, and I just couldn't bear to do the shot on top of it. Her infusion was Friday, so we could do it tomorrow or even Saturday and still have wiggle room to get back to Thursdays before June 14th (next infusion). I'd just rather wait and give her another day or so to fight off her germs. That's what my mama gut is telling me to do, so we'll just go with it!!
So much to say about this big day, but honestly, I think the pictures speak best, so I will just image dump here for this post.
The night before Auntie A painted our nails green and purple! Even my mom painted her nails, which is literally the 2nd time in her life she has worn nailpolish that I can remember.
I was so overwhelmed when I saw this. I knew we were going to have a table, but I didn't know we were going to have a banner that said Phoebe Steps.
Phoebe is walking in honor of HERSELF!
These stickers were a cute idea, but they weren't sticky enough and kept blowing away!
Phoebe was the rockstar of the day!
Time to take a selfie!
Didn't the shirts turn out AAAMAZING?
Jonathan, Donica, Penny and Rocky went all out of the walk. They made signs, they brought donuts, snacks, a cooler of waters, necklaces, and streamers to decorate our tent. But this sign. I don't really know what to say. When I look at it, I'm basically about to cry, because I love it so much. Thank you guys.
The DJ had us warm up with lots of dancing. Phoebe loved me holding her for the Cha Cha Slide and the Cupid Shuffle... ha ha, I don't know... I did my best lol!
They were super prompt about starting the walk! Actually they left at 9:57... we still had people arriving late due to some traffic! Fortunately they arrived and were able to join us just in time!
Phoebe wanted to walk her own Walk!
Then she got tired and I had to carry her! Jason and I got separated and he had the stroller! I thought we were closer to the end than we were when some others were ready to turn back. But with how much Phoebe was wanting to walk, it was probably for the best because everyone caught up to us by the end.
My baby is so cute.
Phoebe is one of the 300,000 children living with arthritis.
Group Photo Time!!
Silly Photo Time!
All the kids on our team! We have such wonderful friends.
Our family! We love you, Phoebe bird!
Phoebe's doctor was also an honoree!!!
I don't know what energy this kid was running on, she would not stop partying and dancing the whole time!
Trying my hand at public speaking.... The night before I was dyyyyyying with sore throat, and literally didn't know if I'd be able to talk, but I recovered enough to get through it. Also, it was windy, so I couldn't really look at my paper super easily, so I just had to go with what I remembered. Anyway, it was super short compared to other presentations I've given, so I wasn't really nervous when I got up there, but I always think I sound weird with a microphone.
Jonathan actually took a video, so you can listen to what I actually said! I don't really know what else to focus on, other than just sharing our story and trying to make people realize that many children are going through this as well. But being an advocate is super important to me now, so I'd definitely do it again if other opportunities come up.
We met another toddler the exact same age as Phoebe! She was diagnosed at 14 months, but it took some time to diagnose, how awful! She crawled without letting one knee touch the floor and eventually it swelled up really bad and she had to be hospitalized for 4 days while they tried to figure out what was wrong. I think the mom said she did 4 rounds of anesthesia in a day, which just gives me chills of horror. They tried to drain her knee, but got nothing. She had an MRI and eventually was diagnosed with JIA and also maybe IBS? She is struggling to gain weight and failed on mtx due to tummy issues. So she is now on Enbrel injections, a biologic that has not been discussed as an option for Phoebe yet. She is ANA positive but so far has no eye inflammation. The mom and I exchanged contact info and found out we were already in a Facebook support group together. We walked together just sharing our experiences. Maybe we can have a play date sometime. Her team had a super hero theme and they also raised a bunch of money. It was fun to walk with them, you could just feel the outpouring of love.
And oh, man, the outpouring of love that I've felt these last few weeks is incredible. Doing the walk really gave me a way to share with people what we've been going through. Any time I got a text or email that someone donated or joined our team, it was like a little burst of joy. Even $10 meant so much to me. And some people just blew me away with their generosity. I'm so glad my mom and sisters could travel all the the way to be in the walk. Even my sister-in-law's dad joined us for the day. Many friends and teachers came to be with us. It was just awesome. To everyone who supported us, thank you from the bottom of my heart. We raised $4500 in less than 2 months. Wow.
And finally, a big shout out to my very caring friend Ashley, who made little favor bags to give to people who attended the walk.
Bird theme favors for the kiddos
Magnets of Super Mouse! The quote says "Sometimes Super Heroes Reside in the Hearts of Small Children Fighting Big Battles." I had literally just shared that quote on Facebook, and then Ashley found it on her own and came up with the idea to put it on the magnet. It was just too perfect. She also made little bird seed hearts! I'm so lucky to have such a wonderful friend.
Anyway, that's most of our news. On Tuesday, Phoebe graduated from PT, we only have to go back if she's in a flare. Her therapist said, "she's like a different child from when I first met her!" I' m having little fantasies about hearing the words "medicated remission," while also telling myself even IF that happens, it will probably just be temporary, while another part of me is day dreaming that oh my god, what if we can get there and stay there.... and then, case-closed, Phoebe will be well and stay well once she gets off meds. I shouldn't even say it outloud, I'm gonna jinx it.... but at the same time, it's probably normal to feel like this. But then I think about all those kids going to prom, or a Facebook friend's daughter who is doing poorly with her meds, and I get scared again. Phoebe has finally decided she has whatever Cordelia has, so her nose is runny. I keep checking her temperature, but it's normal, so I guess we're doing mtx tomorrow. We haven't had to do it, since she had her infusion last week.
Hello, blog-readers. Sorry for the lack of updates, I haven't had time to make a proper entry for a while. Plus, I've been last minute fundraising for the Walk and also making a lot of Arthritis Awareness Month posts on facebook. But finally, it's time to do a bit of writing before I forget all the details of all the stuff I've been doing. Here we go.
Alison came into town on Thursday, which worked out great so that she could be the one to pick up Cordelia from school on Friday afternoon.
In the morning, Jason dropped Cordelia off and I left with Phoebe around 8:30. Turns out I should have left a little bit earlier, because I had to get gas, and then, even though I'd been optimistically been hoping for Friday Lite driving conditions, there turned out to be a huge traffic jam right by my home, so it took half an hour to even get as far as Walnut Creek. I was not late, but we got there with only about 10 minutes to our 10:30 appointment.
Phoebe's first Remicade infusion is definitely a contender for Scariest Days of My Life and even though I was feeling less bad about going to this one, going to it alone definitely upped the Scary factor again. It was better once we were there and actually doing it, (because that's how anxiety works, right?), but the long trafficy drive is still kind of an extra ordeal on top of it all. As I've mentioned before, there's always a song that gets me through these really long days. I listened to the Trashcan Sinatras "Weightlifting" on repeat for peace of mind.
And it's beautiful and comforting, so you should listen to it too.
Phoebe napped on most of the drive, which was also ideal. We got checked in with security and went to the short stay clinic. We saw the nurse we'd had last time, and she remembered us and commented that Phoebe wasn't dressed up this time. Instead, we were both wearing shirts with cats on them (Phoebe had requested this when getting dressed by meowing).
We had a different nurse, named Dawn and she was AWESOME. We were in the same room, with the same bed (crib) as before. This time I requested a Child Life person to also come be extra support for the IV placement, which hopefully will be added to our therapy checklist, so hopefully we will have one every time. We also talked a lot about ways to make Phoebe comfortable and I emphasized how important it was for me that everything gets explained to her or acted out on me before we do it to her.
First, Phoebe got the numbing stickers. Dawn put little mesh gloves on her elbow and hand so that she couldn't pick them off. I also wore a glove.
I took a little video to help show Phoebe, to help her remember the treatment.
Then we hung out and ate a bunch of snacks while we waited for them to work. Thursday afternoon I'd retail-therapied myself and gotten a bunch of gluten free, random, mostly healthy snacks at Whole Foods after work. Phoebe likes snacks more than meals, so I'm always on the look out for new stuff for us to try.
Moon Cheese, anyone? It was a hit with Phoebe....
Phoebe also really liked honey roasted chick peas. I'm sure I sound like the crunchiest granola loving mama ever, but let's be real, we also had oreo thins and fruit gummies, so there.
While we were waiting, the Child Life expert checked in and she had a therapy dog with her!!! Phoebe was very excited to pat the doggie!
Then we also had another unexpected visitor. Dr. B came by our room, even though she wasn't scheduled to see Phoebe at all! She didn't examine her (I'm sure giving Phoebe a break from people touching her), but we aren't scheduled to see her again until June. We had exchanged some emails over Phoebe's eye news and also going over the last blood work. I don't really understand how to read blood work. Phoebe's Red Blood Cell Width continues to be increasingly higher than "normal" but apparently that is not much cause for concern. She has some markers for recovering from being anemic, which she tested as in February. She is significantly lower in Vitamin D than Dr. B would like, and I guess that is a concern. (We are increasing her to 2 gummy vitamins a day now--- the 4 year old dose.) I asked if she needs to be outside more, but apparently that is hard to balance with the fact that Naproxen can apparently make you get severe sun burns. Also, her inflammation levels were higher than March, but not as high as February.....
Anyway, we discussed that a little and also talked about the Walk, which would take place the following day. She didn't stay long, but it was so thoughtful of her to come check on Phoebe.
Phoebe had to take her tylenol and benedryl. This is one of the hardest parts of the infusion. Phoebe does not want to drink the tylenol and the benedryl tastes HORRIBLE to her. She has gagged and nearly thrown up both times now. Oh dear, I don't know how to make this better for her. I told her that I knew it tasted really bad and we watched some Sesame Street but nothing is really gonna change the taste problem. I think the bad experience is making her hate taking her Naproxen too now, as she has started being fussier and resisting it.
Then it was time for the infusion. I had said that last time, there had been an adult gurney in the room with us, and I'd been able to sit on that to have Phoebe in my lap. Dawn was not totally against me climbing into the crib gurney, but ultimately they were able to arrange it that we went into another type of room to get the IV put in. So I was able to sit on the bed with Phoebe in my lap and hold her. The therapy dog jumped up on the bed to sit with Phoebe! It stayed amazingly calm, did not even move during all of her crying.
I think Phoebe cried a bit more during this IV set up, but she had more expectations about what was happening to her. But they were able to do it with only one poke this time--- they did it in her hand, which is where they'd had success last time. Poor baby, it's still just awful to have to go through, I hate it.
Oh and they also took more blood, which made it take a while. I didn't know they were going to do that as they had 2 weeks ago. Hm. So I guess Dr. B is wanting her blood checked again over some of that last blood work.
From there we started the infusion of Remicade, which is about 2 1/2 hours itself. We ordered lunch and watched some more Sesame Street.
Oh and our room got another occupant. Another toddler, same age as Phoebe who had just had her tonsils an adenoids removed. She was not very verbal and was MISERABLE, just crying hysterically, and the mom was a little demanding with some of the nurses over not being able to order food for herself--- they said that ordinarily she could, but since her daughter was on a "liquid and soft food" diet restriction, the kitchen couldn't do it. I offered her a granola bar later, but she said she had some herself and that her mom was going to come and bring her some food.
'
I put on the Little Mermaid and Phoebe went to sleep in her bed! She slept most of the movie and then some! She woke up when it was time for her saline flush and then methotrexate. At last, we were done!
Phoebe did not like having all the IV tape removed. They have really great spray that removes all the sticky stuff, so they peel off easily, but she still did not like it.
After we were done, Dawn wanted to show Phoebe off to everyone else in the clinic, because she was just so cute and brave.
We left shortly before 4 pm. On a Friday.
It took me two and a half hours to drive home. For whatever reason, Waze actually took me through SF and across the Bay Bridge to get home. I did pretty well until I got to the heart of the city, and then things were just a general mess. But I'm sure things were a mess everywhere. That's just the way of the Bay Area!
My mom and sisters had arrived about an hour before me, Jason got home about half an hour after me. Alison had made us enchiladas for dinner, yum.
Though I didn't have much appetite at that time because I've neglected to mention that all throughout this day, I'd had a KILLER sore throat and one of my ears was feeling crazy stuffed up. By the end of the afternoon my throat was super swollen, so I made myself an 8 pm urgent care appointment online. It was so easy. Awesome.
Anyway, I went in while Jason handled bed time and turned out I had an ear infection and Strep Throat. Well, I tested negative for Strep A (whichever strep that is... they can apparently get a result in a matter of minutes) but they grew a culture over the weekend and called today to say that it was positive for some other kind of strep, the girl didn't say which. Fun Times.
Anyway, the doctor put me on antiboitics straight away and told me I should do all 10 days even if I didn't have strep to try and avoid giving whatever I've had to Phoebe. Cordelia has started having a low grade fever and snotty nose, but has yet to complain of a sore throat. Phoebe so far seems fine. I was definitely nervous during the infusion, but they were taking her vitals every 15 minutes-- no fever or problems. We'll see what happens to the rest of the family I had in town, and if I managed to give them some delightful germs.
My throat was hurting soooo bad at this point in the evening, I got myself a smoothie at Starbucks and then waited around for forever at the 24 hr Walgreens for them to give me the uncomplicated order of 10 days of amoxicilin. I was very much doubting I would be able to talk at all the next morning, for the Walk! I took one antibiotic as soon as I got home, another one when I woke up at 2 am, and another one as soon as I woke up.... Thank goodness, I started improving quickly enough to power through the Walk!
But I will have to write about that another night because I am falling asleep as I type this. Goodnight.
