Last night we were supposed to do Phoebe's shot, but she randomly threw up.
We were about to prep it, but hadn't explicitly told her she was about to get it, though she's a smart girl, she maybe could guess what's up. Cordelia (helpful big sister ) had also just mentioned at the dinner table that Phoebe was going to the doctor's tomorrow and needed a shot. Anyway, Phoebe went into the play area, over to the reading chair (where we normally give her her shot), and immediately barfed all over the chair and her blankie (how traumatic).
Phoebe has never thrown up before, so she was quite startled. Poor baby.
So. Was it a fluke? Did she drink too much milk at dinner (though I've seen this girl down gallons of milk away with no trouble before)? Was she about to come down with a stomach bug (like a kid in my class this week)? Or was she having a reaction to the methotrexate Yes, one of the most common side effects of methotrexate is vomiting, either before or after.
She didn't have a fever, but I didn't really want to give her the shot if she was about to come down with a stomach bug and potentially make it worse. :( So we decided to wait until morning to see if she stayed settled or was up barfing all night. It turned out to be the former. She was acting normal by bedtime and slept all night. We can rule out germ related vomiting.
We did the shot in the morning, but then I started wondering if there was any conflict with her getting her shots at the pediatricians.... We were planning to catch her up on the vaccines we'd postposed at her 18 month appointment, and I didn't really want to have to reschedule another appointment. I left a message with her rheumatologist and didn't end up hearing back until the end of the day, and the appointment was at 1:30, so we just went ahead and did the shots. Dr. Jen checked and the only thing in the notes was No Live Virus vaccines, which we already knew to avoid. We did Hep A and the 2018 flu shot. 3 shots today!! Poor thing! Sorry, Phoebe!
Dr. B said that there is some concern that vaccines while on immunosuppressants could be less effective, but in general it does not really happen and it shouldn't matter if she had the shot the same day or 3 days later because with the regular dosing, the medicines are already in her system anyway. I hadn't thought of it in quite such explicit terms, but makes sense. Ultimately, right call, it was ok to get the shots done, which is good cuz we already did them ha ha.
Dr. B was pretty interested in Phoebe throwing up on the chair where she normally gets her shot. Yeah, how does that not seem symbolic? She said that people tend to vomit from mtx for two reasons. One is that it causes nausea. Second, is that they then start having associative nausea and shot anxiety--- seeing a needle, smelling an alcohol wipe, seeing that particular shade of yellow, even hearing the word methotrexate can make people nauseous or vomit.
I said that in general Phoebe seems really well adjusted to her medications (though she is starting to protest more as she knows what's up). She has a really fast recovery time and we don't notice any side effects the next days. But I suppose it's possible Phoebe could experience some nausea and not be able to to verbalize it? She's such a tough kid, I think she'd just power through. We usually do the shot at bedtime so she can sleep through any reactions anyway.
Anyway, I'm really hopeful it was just a fluke. If not, Dr. B said we can discuss some meds to help settle her stomach. Stay tuned.
Phoebe did great at her check up. We love Dr. Jen! She's the nicest!
She is 35.5", so almost 3 ft tall. (87%)
She weighs 28 lb 9.6 oz (69%)
Head circumference 19.65" (95%.... she has consistently had a huge head)
I brought two Phoebe Steps magnets to give to Dr Jen, but left them in the car and had to go back to get them. I dropped them off with the receptionist, but when Dr Jen's nurse Nancy (who we always see) came by, she asked her to give them to Dr. Jen. Literally, Nancy's jaw dropped and she said "OH. MY. GOD. I love this!" I told her she could have the other one! 😊
Alison told me she misses my blog posts, so I'll sit down and make myself write one before bed!
Sorry for the lack of updates all through August. I started to write a big post about All the Feels regarding Phoebe's birthday and her birth story and a further compare/contrast observation into her and Cordelia's personalities.... and then the post crashed and only auto-saved the first few paragraphs. So that really frustrated me and it wasn't something I'd planned out, so it wasn't an essay I could easily recreate. Maybe I'll return to the subject another day, but since then, this blog has languished.
Life has also been insanely busy. Cordelia graduated and started kindergarten. The good news is, she is loving it! I am impressed with how many stories she is coming home with about her day, so she really is paying attention, even if I have heard that she sometimes does still lie down on the floor during gathering time. She already has a little boy she plays zombies with and loves her teacher, so overall a huge success. We used to have to drag her out of bed every morning, but now she is eager to get ready! Not sure if she'll feel that way after 3 years in the same place, like at OFS, but we'll take it for now!
I have also just gone back to work and Phoebe is adjusting fine to her longer days. We are working hard to get out of the house promptly and having everything ready the night before. So far, so good.
Jason also had his insanely busy time with college move in, and then today was my second day of school at my preschool. And of course, Phoebe's infusion fell on the 6th as well. I was really dreading the back-and-forth process of the day, the combination of rushing around and sitting in traffic, and just feeling generally overwhelmed. In the last month, our entire daily life routines changed, I had to say goodbye to yet another close friend who was moving away, and move back into longer days and more responsibilities at work. I was feeling anxious about telling my class parents about not being there for most of the 2nd day of school, but of course, once I finally sent out the email, everyone was very supportive.
Also, I'm back in a familiar classroom, which, although it has it's challenges, I think I will enjoy a lot. All of my kids transitioned so easily, it was such a relief. Only one friend needed a little extra love and support, and even that just kind of came in waves through the day. Phew!
Anyway, best of all, Jason was knowing I was feeling drained and on Monday suddenly said he thought he might be able to get the day off to come with me to Phoebe's infusion. It was such a weight off my shoulders to not have to go alone. I mean, once we're there and we're doing them, I know it's really ok and I'm totally fine (and even better, Phoebe is totally fine), but it's never going to be something I look forward to. And the driving really wears me out, so being able to drive with Jason totally saved my day. Jason says he doesn't do much besides sit there at the appointments because Phoebe is always wanting me to hold her, so basically he is being my emotional support animal. LOL! That made me laugh, but really, just his presence made me feel so much better.
Phoebe was completely exhausted and needing to nap when we left, so this is the first time she had a melt down over going to the hospital. She cried and said no and ow and acted really sad and scared. Awwww. Usually she has been able to think about positive things that she like, like seeing the elephant topiary.
Once we arrived, she was feeling better from napping in the car.
Our infusions have been moved to the Bass Infusion Center for Childhood Cancer and Blood Disease, so we will no longer be going to the short stay clinic. It's just around the corner, of the ward, but different nurses and rooms.
When we went in, an older boy who was maybe nonverbal was having a bit of a melt down in the waiting room. My heart went out to the mom, she was really struggling, while trying to be very loving and reassuring. Phoebe was kind of alarmed by the very loud screaming and crying. The nurses weren't ready for us, so they quickly suggested we go out and play at the train room just outside.
"Beeyah!"
That was definitely the right move and put Phoebe in a good mood right away. It was some time before we got called in, and then it was more waiting through the numbing patches and getting everything set up, pre-meds, etc.
The Bass center is a little more lax on protocol. First off, we got an actual bed, not a crib, which meant Phoebe could actually sit with me! Yay! At one point they were like, oh yeah, I guess we should have you sign a waver or something since she's so little, but no one bothered. They also didn't put any sensors on Phoebe's back or toes to monitor her throughout the stay. When it was time to do Phoebe's methotrexate, the nurse put on purple "chemo" gloves, but didn't suit up like the nurses in the Short Stay Unit. I commented on it, and the two women in the room laughed and said they were usually used to handling big bags of chemo, and this seemed like such a tiny amount to them, it didn't matter.
The TV is hanging from the ceiling above the bed, which Phoebe did not like, because she couldn't do the touch screen. You also couldn't access the Internet, so no Youtube and no Sesame Street. (Eventually she watched some on Jason's ipad, but we didn't have a super great connection). We watched Elmo in Grouchland again, but it doesn't really hold her interest as it's more of a story. She watched parts of the Little Mermaid and Moana.
They did not have forehead scanning thermometers, so they had to do it under her arm. Most of the nurses had trouble with Phoebe's blood pressure. It kept reading high, but then they would reposition it and do it again and it seemed ok.
One sad thing is the therapy dog does not visit the Infusion Center.
We did have a pretty nice Child Life person come, a lady named Jackie who was in a wheel chair! (Glad it wasn't the weird guy). She brought Phoebe some toddler toys, which was great. Phoebe really liked a spinning dinosaur thing too.
Jackie also brought a toy IV and we played doctor on Snuggle Puppy and attached the IV to him. Phoebe really liked that and said "POKE!" and wanted to keep doing it. I think it really helped prepare her for the IV placement.
Phoebe did really well for the IV. The nurse was also extremely skillful. When it was time to take it out we had a different nurse, but she commented on how well it was placed and wanted to know which nurse or if the vascular team had put it in! It did bleed a lot, I noticed, but maybe she got it right in the vein or something? I was most happy that it was done successfully in one try, unlike last time. Phoebe fussed a little and only tried to move once, but other than that, held very still! Everyone was amazed with how well behaved she was all day and we got so many compliments on her precious curls.
Phoebe took this picture on my phone and now I think it's artistic. #childhooddiseases
We shared our room with a 7 year old boy who I think had cancer. 💔 His mom said Phoebe was so cute and that seemed to gross him out and he wanted to know why she thought that. She said, "All babies are cute. You were a cute baby too." He did not want to be described as cute, ha ha.
My friend's husband has been hospitalized all week due to pneumonia, complicated with Cystic Fibrosis. He'd hoped to not still be there on Thursday, but when I messaged them, he unfortunately was. So we got it figured out so that he could go through security and visit us. I hadn't realized, but the main hospital is actually connected to the old wing of the Children's Hospital--- where we were! So it really was within walking distance. He came as we were finishing up, and it really brightened our evening to be able to see a friend, even under sucky circumstances. He and Phoebe are both warrior IV buddies, as he'd brought his with him. He is not contagious any more, but doing lots of breathing treatments and therapies. I hope he can go home to his family soon.
Phoebe was kind of zoning out and ready for a nap when he arrived, but after she was allowed to get up, she got a lot more energy and started running around and giving out hugs. It was super adorable.
We did not leave until around 7 pm. From a 1:30 appointment start time. There were definitely delays-- the IV didn't even get placed until 3:30, and a few times they were having computer glitches of some kind.... so overall, a very long day. But the bonus was traffic had lightened considerably. If we'd left at 5, we still would have been picking up Cordelia at 8:30. So now we are thinking a later start time actually might be more manageable. The tricky part is if Phoebe sleeps on the drive home but then wakes up and thinks it's time to play. But today she was so worn out, she let us transfer her straight to bed with only some minor stirrings.
Well, now it's quite late and I've got to get to bed. Hopefully there won't be as long a gap between posts now.
A bit unexpected, but Phoebe loves snakes. Actually, I don't know how much she actually loves snakes or that she just likes the idea of snakes, but Phoebe and snakes is definitely a thing.
This all got started months ago when we went to the pet store to buy cat food and I took a photo of Phoebe and Cordelia looking at snakes in their tank. The snakes were actually quite active and moving around. I feel like every time I've looked at snakes in pet stores they are sleeping, but since Phoebe has taken an interest in them, I see them moving around and being much more active! Who knew?
Anyway, Phoebe would always pick up my phone and say "hisssssssss", asking to look at this infamous photo of the snakes:
After another to the pet store, I took 2 videos of the (again) active snakes for Phoebe. We have watched these videos many times. Pretty much every day Phoebe grabs my phone and says "hisssssss".
So that is how I came up with how to celebrate Phoebe's birthday. I didn't want to have a big party or anything, so we just celebrated with family. We did it a bit early, as her cousins are going to be out of town for a trip in the next week.
Phoebe shares her birthday with Harry Potter, July 31st. And of course, if you know the books, one of the first ways that Harry realizes he has magic is when he makes the glass disappear and lets a caged snake free. Later, it is determined that Harry is a Parseltongue, a rare talent that allows wizards to speak to snakes!
As she's still young enough to not protest, I dressed her up in a little Gryffindor-inspired outfit and took her to the East Bay Vivarium, a big reptile store in Berkeley!
We also went to a local Mexican restaurant for lunch. I'd never eaten there before, but my director who lives in Berkeley had told me about it, and it was within walking distance--- so very convenient. I thought it was yummy. They were a little light on their dessert supply when I went to order, but there was enough to go around with flourless chocolate cake, sprinkle cookies, and Mexican wedding cookies, so I think everyone was happy.
Phoebe was so excited when everyone began to sing to her. I swear, she has been waiting for that moment. She even immediately blew out the candles right on cue. Then she said "Biyah" because she wanted everyone to sing again. Lucky baby, just a few more days and she will get her wish!
We then walked a couple blocks and explored the Vivarium! It was very neat, with so many snakes, turtles, lizards and frogs, just as you'd expect.
Handsome Snake
This is a burmese python, which is what was used in the film for when Harry makes the glass vanish.... watch out! Off to Brazil.... thankssssss, amigo!!
Cute little guy!
With Meme and Papa.... it's impossible to get both of my kids looking at the same time....
Cordelia really liked this giant monitor lizard... named Elmo
HORRIBLE!! (Cordelia loved it)
Cute!
Cousins bonding over reptiles
Phoebe really liked this guy!
He wanted to say hello and did a little dance!
Dancing Lizard
Phoebe got her own camel back water backpack for her birthday from her cousins' family.
Phoebe loves drinking out of Jason's so it was the perfect gift!
She couldn't wait to wear it and drink from it!
I hope it was a fun, unique outing for her birthday! I wasn't feeling up to organizing a party or beach day, so this felt just right. Tomorrow is her actual birthday, but we are headed to a farewell party for my coteacher who is moving back to France.
Ok, before we end, I have to confess, one of the main reasons I dressed Phoebe up like a little Gryffindor was because I wanted to make something this for JIA awareness! Phoebe is the bravest person I know for sure!! I am kind of wanting to tweet it at JKR, but kind of struggling with character limits to make a post. Facebook is much better for me in that regard!
Happy Birthday Phoebe! I can't believe when you wake up, you will be 2!!!
Yesterday Phoebe had her first eye check since having clear eyes in May. And it was good news! Her eyes are still clear, yayyyyy!!!
Dr. C was very pleased! She also said that the "stickiness" of Phoebe's eye was gone.... I'm still not sure exactly how her eyes were sticky, but she said that sometimes even once treated it can remain, but lucky for Phoebe, it has cleared up.
Dr. C continues to impress me with being able to engage Phoebe and is very caring. Phoebe wanted to give her a hug at the end of the appointment. I told her not to refer any other pediatric patients to Dr N.
Phoebe climbs right up into the chair, no hesitation!
She sits in my lap for the exam though, I have to boost her up to get her chin on the chin rest for the slit-lamp.
This is the duck that helps kids know where to look.
Phoebe loves it! The screen also shows Dora the Explorer or Finding Nemo.
Today we got our first bill from Blue Shield about Remicade. I had been wondering how much one infusion costs. $16,271.10 Pretty sure we'll be hitting our deductible in January of 2019. Can you even imagine without insurance? $16,000+ a MONTH? And all billed as "Hospital Misc"... what does that mean? I find myself speculating over the costs. How much does the numbing sticker they put on her cost? How much is the dose of tylenol and benedryl? The IV placement? The infusion? The saline? The methotrexate? The room? Is our food included on that? I read an article on facebook recently where someone was charged thousands of dollars for two tiny screws that went in their foot. The screws themselves, which could not have been at all expensive to make, cost thousands of dollars. The price inflation is just out of control in this country. I hope that by the time Phoebe is 18, we will have made some better progress with reforms.....
In the mean time, our girl continues to be her wonderful self. I'll have to do a proper post about some of her early bday doings, but these are from today:
Phoebe was determined to dress herself.
I only helped a little.
Phoebe loudly sings the ABCs with me
"Ba Ba Black Sheep" rendition
Phoebe is just starting to get really into Nursery rhymes, which Cordelia was obsessed with from 10 months on. Cordelia used to have everything memorized and we would pause at the end of each line of her to fill in the last word. It cracks me up that Phoebe vocalizes for the whole song, trying to match the noises coming out of my mouth. This girl loves to sing. She asks me to sing her showtunes non stop. Her pronunciation is so adorable: "-ing, ing, ing" is how she says "sing." Phoebe also loves going swimming lately, which she pronounces: "HYM! HYM! HYM!" I'll have to get that on video because it's one of my favorite things.
Phoebe took her shot tonight like a total badass. She. Did. Not. Even. Cry.
And Jason, hero that he is, did it super fast and super awesome. Boom!
In fact, he is so brave, he was actually wanting to try giving Phoebe her shot alone. As you may have noticed, today is Friday, and the shot was one day delayed. I had a workshop to go to Thursday night, and went back and forth a bit about whether or not it was worthwhile to even attend and how we would handle the fact that it was shot night. I was leaning toward delaying, but Jason really thought he could handle holding and poking Phoebe.
I decided to go to the workshop, but eventually got a text from Jason that he couldn't do the shot after all--- we were out of syringes, which we hadn't thought about for 2 weeks because last Thursday was the infusion. Oops!
So we got those today and the shot was a success. Phoebe was still a little reluctant when we told her it was time, but we powered through it. I swear, she is a gift to the universe, the bravest little baby you ever saw! After we gave her a bag of gummies.
We usually give Cordelia some "solidarity" gummies too, but tonight I made her wait until she had earned hers by doing her own torturous job: getting her finger nails trimmed. Ever since she was a toddler, this has been an ordeal for Cordelia. It used to be one of the only times she was allowed to watch tv, to help distract her through getting her nails trimmed. We will usually let her nails get pretty long because we try to go awhile in between cuttings, but then sometimes she starts to bite them off. Now even letting her watch the youtube show Brave Wilderness is hardly an incentive. She finds it so uncomfortable and even says it hurts. I want her to suck it up, but I guess on some level it must just feel awful to her.
I trimmed Phoebe's nails today--- no screen time bribes or treats required. I just ask her which finger I should do first and say "snip, snip, snip," or count, to describe what I'm doing.
Cordelia can also be hyper sensitive to noise. Things like hand dryers and loud flushes in public restrooms make her cover her ears. For a long time she wouldn't use automatic potties out of fear of them flushing unexpectedly.
Phoebe, continuing to live in opposite land, is still going potty every day, and loves sitting on big potties when we are out and about. We went to the aquarium on Sunday and Phoebe stayed dry the entire day, except for one wet diaper at the restaurant for dinner. Even when she took a nap on the drive down, she stayed dry! Phoebe is still a long ways off from underwear though---- she may pee and occasionally poop if I sit her down, but she has yet to really initiate taking herself to the bathroom.
We got Phoebe a stuffed sea otter. She really liked watching them swim and eat shrimp frozen in blocks of ice. Phoebe goes to bed in a pile of blankies and stuffed animals. She has her one special blankie that she cuddles and nuzzles to put herself to sleep. She likes to be rocked and for me to sing to her.
Cordelia took a long time to get into stuffed animals. She had one "magic" blanket that helped her sleep, but she doesn't even sleep with it anymore. She likes her quilt and sleeping with Dog. Dog is a gray and white stuffed animal husky. Cordelia picked him out herself at Kohls when she was 12 months old. He was $5. I told Jason, "Do we really need to get this for her? If we buy our child everything that she picks up that's $5, what kind of parents are we gonna be?" And he said, "Come on, it's $5." and Dada won the day. We left with Dog and he has been Cordelia's faithful lovie ever since. He out shined Meow, a cat she liked for a while, and for a bit I was nervous that her stuffed lynx Sierra was going to overpower Dog, but nope.... Dog is the trusted lovie who helps her sleep and keeps bad dreams away. I think she likes him even more now than she did as a baby.
Phoebe's main lovie is Snuggle Puppy, a doggie with a red bow that I got for her birthday last year. But if you give her anything soft and cuddly she will be happy. She has two identical blankies. If she finds both of them at the same time, she will get super excited and amused, exclaiming, "Biyah!"
Phoebe is talking more and more. I forgot to mention, but around Father's Day, she started saying her name! It sounds like "beebee" or sometimes "pibee" It is also almost identical to how she says "Baby." So sometimes she might be saying Baby and I just can't tell. I often call her "baby Phoebe" so both are totally applicable. When she was learning to talk, Cordelia referred to herself as "Baby" for most of her first year. Saying "Cordelia" was just too hard. Eventually she started calling herself "Dia" and "Delia", before getting the hang of Cordelia. "Baby" was one of my main nicknames for Cordelia for a long time, but I think that is mainly because she just used it as her name for so long. Phoebe turns 2 in ten days! But I am not ready for her to stop being my baby!!!!!
Thursday was Phoebe's 4th Remicade infusion! The appointment was slightly later than the last two, but not as late as our first infusion. With a 1:30 start time, I left the house at 11:30. I dropped Cordelia off at Meme and Papa's and was hitting the road around 11:45, with an arrival time of about 1:10. So, pretty decent overall. Waze again took me a different route, this time going on Hwy 13, so I continue with not really knowing how to get there without technical support!
I'd forgotten Jason had the umbrella stroller in his trunk, so Phoebe walked from the parking garage to the hospital. I told her we were going to see the elephant topiary, and she got so excited, she started to run to it! So cute!
We had different nurses this time, and all of them were fantastic. One nurse checked us in while our main nurse was finishing up her lunch break. We did Phoebe's weight and height and then we were brought to her bed. Which was already there--- no waiting around for a crib to be delivered, yay!
This was our first time in a different room. We already had a roommate, a girl who maybe a young teen, hard to guess her age. Not sure what was wrong with her, maybe she'd had a minor surgery or procedure? She was sleeping when we got in, so we kept lights dim and tried to be quiet. Her parents were there and we didn't really talk, other than I checked with them about the TV not being too loud. They were very nice and had no complaints at all, which was kind of refreshing after the demanding mom I shared a room with a few times ago, who asked me to adjust the TV volume several times, along with having lots of attitude with the nurses. The family watched 10 Things I Hate About You. It was funny hearing the parents explain some things, like who Heath Ledger was. The girl got up to walk around after a while and was discharged a bit before we left.
Jason was able to meet us there! Having him there made everything 1000 times better!! Honestly, Phoebe just was so comfortable the entire time, the whole experience kind of blew me away.
The nurses asked me about how I liked to do things, and this time I was proactive and asked for the benedryl and tylenol to be given as early as possible, so we would not have to rush to get Phoebe to swallow it. Phoebe sat in Jason's lap and then I gave her an M&M. Then I gave her some of the better tasting tylenol. I got her to have a tiny lick of it to realize it was not completely disgusting. With some prompting, she drank it and earned another M&M. She still did not like the benedryl, but there was no melt down. I gave her an M&M half way through and then another after it was all gone. HUGE PROGRESS. Hopefully she can remember it was not so bad and we will not have to force it down her throat anymore! I think just having lots of time and not pressuring her is key!
After wearing the numbing patches for half an hour, we went to the treatment room so I could hold Phoebe for the IV placement. The Child Life person attended. At first we were told that the woman, Molly, was there today, though sadly she had not brought her dog. But then, when it was time, the man from last time showed up. Sad face. This guy is kinda weird. I don't find him very comforting and I think, as I have noticed before, Phoebe doesn't do as well with men (apart from that eye doctor from India, who was just so in dad-mode). When we watched the Mickey Mouse Hotdog song on the ipad during the IV placement, he was talking about characters like "Pete" and "Clarabelle." If you are trying to connect with a 1 year old you just met, are those really the characters you would point out?? I think it's weird, don't you? Jason agreed.
Anyway, Phoebe totally ROCKED IT, so his presence was basically pointless, though that's really no fault of his, she was just being an amazing baby girl. He did come to sit close to her by the bed, but I asked him to move so that Jason could sit there instead. (He was happy to comply, but still--- I'm not someone who normally tries to go around telling other people what to do or where to sit, so even something as small as asking him to move is me advocating Phoebe. I have to speak up for her.) So he basically just hung out and helped praise Phoebe for how well she was doing. I think unless the doggie is available, if infusions can continue to go like this, we really don't need much help from Child Life, especially if it's this guy.....
Phoebe sat so still the whole time. She basically only cried a little the moment the needle went in. Maybe our nurse Janice just did a really good job? I think Phoebe was really numbed up well for it? Janice also put a warming pack on her hand right after she took the stickers off. I don't remember the other nurses doing that, and said so, but Janice was just kind of like, "Oh really?" in a little surprsied way, so maybe they did. Or maybe they haven't and it was just one more thing that helped! Phoebe also kind of watched what they were doing, and seemed ok with it. Last time, when we had to do 2 IVs, Dawn was trying to get Phoebe not to look, and I think that was actually part of the problem-- trying to distract her too much. She said watching made Phoebe tense up and that made an air bubble, so the IV blew after a while.
Is it weird that I think maybe she SHOULD watch? I am hoping this girl doesn't grow up with a huge fear of needles and pokes---she should know what is happening to her.
They had already ordered the medicine, so there was no waiting, we were able to start the infusion right after we went back to the room. After that, it was smooth sailing and lots of TV watching. The only "issue" was that Phoebe did not take a nap. Our room was lighter-- we had a curtained window this time--- and maybe having Jason around was a little extra exciting. She laid down for a bit, but never went to sleep. We watched Sesame Street and some Berenstain Bears cartoons and ate tons of snacks.
We did her mtx and then we were all done! Phoebe even did well with Janice spraying her bandages and removing them. Oh, another thing, Janice taped Phoebe up much less than before. Previously, they put a cover over the IV, a "house" and then secured it with lots of tape that then had to be removed. Phoebe did tug at the IV a couple of times, but I told her to stop and the rest of the time, she ignored it. So that was great!
Also, no one put the hospital ID bracelet or the No Known Allergies bracelet on Phoebe. They sat on the table by the bed the whole time. This was good because Phoebe never wants to take them off--- even the following day. I think she freaks out, thinking it will hurt to remove. She is the same way about her bandaids after shot night now.
We left at like 5:45.
We took 680 home, instead of SF. It took about 2.5 hours. There are just no good options at rush hour. Sometimes I think we should drive down for a non-trafficy appointment and then stay the night and and drive back at a non trafficy time in the morning. With the infusion taking close to 5 hours of hospital time, there's just no possible way to miss traffic both ways! But it would also not be great for missing more and more time off work. No good solution here!
Phoebe napped once we got in the car, but still woke up after an hour. I have car bag of entertainment to keep her busy. When we got home, she played outside until Jason arrived with Cordelia. When we went to bed, she would not stop trumpeting--- telling me about the elephant topiary again. 🐘
Dad came!!
The evil benedryl vanquished
Janice invited Phoebe to help plug herself in!
I liked how she was getting her involved in her own care!
Phoebe called her socks "shoes"
Happy watching Elmo
Phoebe asked to get out of bed to sit in my lap and watch more shows.
Ok, time to abandon the nap attempt!
Thank you Janice!!! She was stellar. Also, check out her cute onigiri scrubs!
The song of the drive is....
listen close, it mentions a phoebe!
Phoebe was featured on a few JIA mom's pages on Facebook for JIA Awareness month. One of them asked me if Phoebe Steps had a page. I have gone back and forth about having a public Page or a private Group. I wanted to start a Group and then post when in it when I wrote a blog update here. But I don't think I could share that on a Page---- I have written too many personal things on this blog to not want to have at least some idea who is reading it. At least for now. Maybe if I went back and deleted certain posts. I dunno. Livejournal always had a feature that you could make select entries "private", but this blog doesn't seem to have that option.
But advocating and fundraising continues! At one point I got a text that I had a $50 donation, followed by a $500 donation. It turned out that one mom's company does donation matching... but $500?? I almost fainted! Not surprisingly, it was a mistake and got corrected to $50. But for a couple hours I thought we'd topped our annual goal.
We also have a mystery donation from the Amgen Foundation. Who do I know who works there or connected them with Phoebe Steps? Thank you, friend!
I have gotten a few other birthday donations this month; in fact, 2 came in tonight. One from someone I have not seen in years, don't know well, and they had already donated before the walk! It's just so heartwarming. As of right now, we are at a jaw dropping $4,954! I bet we can make it by Phoebe's birthday! 🙌
I am also thinking of doing a Jingle Bell Walk around the holidays. Not sure what our local options will be, but I'll look into it, maybe SF. At least just for our family to go to, I won't try and get a huge team again.
Ok, I guess I better get back to more Phoebe and family updates, I realize the last post was a digression. This post took me a really long time to write, sorry it's so disjointed.
I'm very happy to be on summer vacation! During spring break, I was completely burned out and we barely did anything except take some much needed time to decompress at home.
Well, this time, we're a bit busier! This actually going to be our last vacation time before Cordelia starts kindergarten in August! 😩
On Saturday, Jason was out gaming pretty much the whole day, but we found some fun stuff to do. It was very hot again, so I took the girls out for some AC. We went to the pet store. Every time one of us says we have to go to a "store," Phoebe will hiss like a snake, asking to go to the pet store. So we made very successful visit and both girls got to hold a kitten and see all the other animals. Then we went to Trader Joes and I bought them some mini ice cream cones for a treat. After Phoebe's nap, I took the girls to the pool. Normally, I carry Phoebe tucked under one arm, while Cordelia (in her floaties) clings to my other hand. It's not ideal, but the girls aren't old enough to want to swim for long anyway, so it's ok. This time, though, Cordelia suddenly got the hang of her floaties, using the vest to keep her head up and actually paddling on her own for the first time ever!!!!!! She was so excited to be "doggie paddling" and said she wanted to swim back and forth across the shallow end 100 times. I was SO PROUD OF HER. This girl never wants to get her face/eyes/ears wet at all, so this was huge. Phoebe also loves the water and asks me to put her "down".... not realizing that she will sink lol!
Here is a video (from another day) that I took before getting in the pool. She gets more confident as she goes, but this was the best I could get, while persuading Phoebe to wait with me before getting in too!
All in all, a wonderful summer day that had me feeling like a good mama! 💗
On Sunday, we went to a (belated) celebration of Eid, the end of Ramadan, at a friend's house. It was really special and I was so happy to be included.
While we were there, the mom introduced me to another family who was there whose 11 year old daughter has hyper mobility and uveitis! The girl was so amazed to meet a baby with uveitis and was very sweet. She and her sister loved asking Phoebe for hugs and high fives and found it hilarious when they learned she could fist bump. The mom and I talked all our backstories. They learned she had uveitis because her eye turned red, and believe it may have been triggered into activity from stress after a big move. Her episode was 3 years ago and took 6 months to resolve (with drops and oral steroids) but she has stayed clear since, so far. She has to wear special shoes and was telling me she was not supposed to kneel or go on the trampoline because of her hyper mobility of her joints. So far, she does not have JIA, although I have read about children having both. She still has to get her eyes checked all the time, of course.
During the party, a lot of kids started running around and it became "boys vs. girls" with some slamming of doors upstairs. I went up at one point and found Cordelia away from the action, in her friend's bedroom with a big stack of Disney books. She had read every single one to herself and was finishing the last two. She continued to look at them after Phoebe and I came in, and then asked me to read them all to her when she was done. I had to tell her to just pick one. Well, that is Cordelia in a nutshell for you. This is not the first time she has disappeared to raid a friend's bookshelves during a playdate either. That's just who my kid is. Sometimes I worry about how she is going to struggle socially in school (, but dang, she is just so happy being herself.
In the afternoon, Cordelia and I had a Mama and daughter date to see The Incredibles 2. (Jason had a date with her on a different day.... I got to enjoy the movie and she got to see it twice... win!) She is really super hero obsessed and after seeing the first one, she loved it. There were a couple of scary parts, one of which she hid for, and honestly glad she didn't watch it. The bad guy Screen Slaver has a black gas mask face with fangs--- even scary for me! Conjures up the same freaky feelings as The Empty Child in Dr. Who, there's just something wrong about it. Cordelia's take away from the Incredibles has been to pretend to be her own original character: Crystal. Her power is to make crystals that trap bad guys. She is also Frozone's sister. Uh, amazing! She just made this up herself!
Today (when I wrote this, ha ha....) was Monday.
Phoebe has been very cranky when she wakes up, starting the morning by saying NO, and not wanting me to change her diaper and getting really upset about it. It's been kind of frustrating, but then today, I suddenly said, "You don't think she's feeling stiff, do you?" Jason responded: "I was just thinking the exact same thing!!" I am hoping it's just because she is teething. I have been telling everyone Phoebe is doing amazing, I just want it to stay that way. Sometimes I think that her knees are still not as strong as they could be... it seems like the big step stool in our bathroom is harder for her again. But then, she runs and climbs everything. I don't see any swelling. I'm just constantly second guessing, it makes you crazy! I wish she could tell us!
Fortunately, Phoebe perked up and I took the girls on our next outing: To the Bay Area Discovery Museum! It is one of my favorite places, it is just so magical!
Driving the yellow car was one of Phoebe's favorite parts
Cordelia is too tall to go in the Toddler Play Area!
I took Phoebe in... she was nervous to climb in the tunnel and didn't really like the water beds.... my favorite part!
Phoebe did like this climbing
On Tuesday we toured Pixar as I know a family that works there. Both the parents are animators, though only the dad was working that day. You can't go in without someone inviting you, so it was really special! There was lots of art and statues of characters around, so even the girls enjoyed the tour, despite some more boring building/office place stuff. And of course, many of the animators have decorated their offices to look like castles, jungles, Mayan temples, and taco shops... so it feels kind of like you're at Disneyland.
The coolest thing was getting to see where the dad works and see his computer where he was in the process of animating a scene. My other favorite story is that there is a scene in The Incredibles 2 where Mr. Incredible and Elastigirl talk about her going back to work or staying with the family, and that scene was animated by both of them. And what's more, they had had a conversation exactly about that, as to whether or not she would work on the movie or stay with their kids. I know that scene was especially poignant to me, especially given that I am not counting down the days until I'm going back to work full time. Yikes.
My JIA kid is the one who wants to walk and push the stroller!!
Crystal and her brother Frozone
My Incredible Family!
Wednesday was the 4th of July. We have sometimes gone to a parade, but Jason said he wasn't feeling very patriotic this year, and I have to say I agree with him, especially given all the repulsive baby cages and family separations. In the evening we went to the girls' cousin's house and got to see all the neighborhood fireworks.
The second half of vacation was pretty mellow, just errands and pool and such. On Saturday or Sunday I noticed a bruise on Phoebe's right foot, but also she was walking slightly funny on the left. She was not putting her heel down, not putting as much weight on that side. She was still moving around fine, but I found it slightly suspicious, so I took a video to document it. I haven't noticed much else in the days that followed, so I think she's ok.
Welp, this post was sitting around unfinished for so long, I almost deleted it But it was a nice vacation, and I'd like to remember it, so here's the post. You can expect a write up of yesterday's Infusion #4 soon.
) had also just mentioned at the dinner table that Phoebe was going to the doctor's tomorrow and needed a shot. Anyway, Phoebe went into the play area, over to the reading chair (where we normally give her her shot), and immediately barfed all over the chair and her blankie (how traumatic).
) had also just mentioned at the dinner table that Phoebe was going to the doctor's tomorrow and needed a shot. Anyway, Phoebe went into the play area, over to the reading chair (where we normally give her her shot), and immediately barfed all over the chair and her blankie (how traumatic).
