Shifting Shots to Thursdays

We have infusions scheduled up through August and they will mostly be on Thursdays (one on a Friday).  So we are shifting our injection day of the week down to match.  So we skipped yesterday and did the shot tonight, so that next week she can have it at the infusion (we still have to bring the meds and syringes ourselves).

Tonight's shot was one of the most successful yet!  Phoebe was distressed, but not in full crying mode.  She opened her bandaid herself and wiped her leg (then I did).  Then she turned on the buzzy bee and Jason came and did the shot while I held it on her leg.  Then we watched Cookie Monster and I gave Phoebe a hand stamp.

Phoebe got a hand stamp over the weekend and loved it.  I made the mistake of commenting on how it had washed off a bit before bed on Saturday.  Phoebe became very sad and kept pointing at her hand.  Then she would open and close her mouth, like blowing bubbles, to say that the stamp had been of a fish.  Phoebe would not go to sleep because she kept sitting up and pointing to her hand and saying "dis" (this) and imitating a fish.  She has continued to bring it up daily since then.

Tonight she got a lion hand stamp.  She had to check herself because she started to call it a fish again, but then remembered to switch to roaring/growling.

Cordelia came and gave her big big hugs after.

Big sis is much more enthused about the ice cream party and the sprinkles.  Phoebe is over it.  When we mentioned ice cream tonight, in a conversation with Cordelia, prior to the shot,  Phoebe was listening and automatically said "ow."  At a restaurant last week, the girls got a scoop of ice cream for dessert, but Phoebe would not eat it.  So sadly, she is having a negative association with ice cream.  I mean, she hadn't had it a ton, but she had definitely enjoyed it, so it used to be a really special treat.  I offered her just sprinkles, but she wasn't interested in those either.



Working on learning more about Remicade.  Sounds like the nurses and child life specialists do everything they can to get you through it.  I'm hopeful it won't be as bad as I can imagine!

Welcome to Holland

(Slightly emotional reading content..... consider yourself warned)




"Mama, when Phoebe dies are we going to put a stone for her?"

Cordelia asked me this as I lay in the bottom bunk with Phoebe, waiting for both of them to fall asleep.

When our beloved cat died last year, we made a mosaic stepping stone in the garden to mark her grave, which helped Cordelia process the loss.

"Are you worried about Phoebe dying because of her arthritis?" I asked.  "Because it's not going to make her die.  Remember, it just a disease that makes part of her body not work right, in her joints and in her eyes."

"Phoebe is going to die before me." Cordelia asserted.

"You and Phoebe are not going to die.  Not for a long, long, long time.  Not until you are both very old women, and you have your own babies and grandbabies." (if you want to Cordelia, no pressure)

"Like Meme?"

"Yes.  Or you could even be a great-grandmother.  I had a great grandmother and she lived to be over 100 years old.  Phoebe is only 1 year old.  She has a very long time left to live."

"Like Dada?"

"Yes, Dada is not going to die either."

I got up and gave her lots of hugs and kisses. "We are going to do everything we have to make sure Phoebe is ok.  Even though she has arthritis.  We are going to give her all the medicine and things the doctors tell us to do to help her feel better.  Remember, before when it was so hard for Phoebe to walk?  Isn't she already doing much better?"

Phoebe of course took the opportunity to sneak out of bed.

This was not the first time that Cordelia has shown concern over processing her sister having a chronic disease.  After we were gone overnight for Phoebe's joint injections, Cordelia asked me if I were going to die, which I infer was her worrying about what all of Phoebe's hospital trips and doctor's appointments meant.  It sucks that as scary and confusing this is for me, it must be just as scary and confusing in its own way for her.  Her questions make sense and I tried to go into a kind of zen, matter of fact place to talk about them, focusing on reassuring her without being dismissive.

But of course, hearing your child asking if their baby sister will die is just heartbreaking to hear as a parent.  Because I don't even want to imagine it, let alone think about her imagining it.

Like we had with the MRI, I feel like we're back in limbo, waiting for the Remicade infusion day.  I'm weirdly happy/relieved that we got approved, but now I'm also just super down and anxious  waiting for it.  We are also going to do labs and her mtx shot while she's there, so it's basically going to be 100% awful things all day.  I think the worst part for me is always waiting around for things and not being able to imagine fully what it will be like.

Yesterday, a friend who has moved from the world of early childhood education into Child Life care sent me a link to a "poem" about coming to terms with having a child with a disability (or diagnosis).

* * *

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland."

* * *

It's still a loss. I'm still kind of lost.  But Phoebe is happy.  Phoebe loves me, I am the best thing in the world to her.  That's all that matters, where ever we are.

Climbing and Giggling

This week was pretty quiet.  We just had our OT appointment with Lisa.  She thinks Phoebe's hand is doing better and that her cyst has actually started to go down.  I agree!  Phoebe still does not like her hand touched though.  Lisa was speculating that maybe she's just trained herself to guard her hand and that she's not really in discomfort.  Oh man, I hope that could be the case.

This week we did a soapy water tub and a bird seed tub for sensory play.  They use a deeper container than I would, so Phoebe's hand has to go further into the material.  I usually go for something wider, so there's less spillage and more children can reach in.

Phoebe has been super active and getting into mischief!  This girl wants to climb on everything!  Just look at what she did--- she climbed up the back of the bench like a ladder to look into the laundry room when its window was open!

Someone left a giant bear at the playground and Phoebe just loved it so much.  It was actually left behind because it had been thrown up on the awning, but I was able to reach it and pull it down.  Phoebe has continued to talk about the bear since coming home, pointing toward the outside and saying "up" when she saw a picture of it, as she remembers it was up high.

Phoebe also mastered using the "stairs" to climb onto her little slide!  She saw our neighbor do it and then tried it successfully herself.

I had a voicemail and follow up email from Dr. B on Thursday.  She mentioned that even though Phoebe's approval letter says the infusions can be 6 to 8 weeks apart, she is actually approved for unlimited infusions.  I had been going to ask about that, so that's good to know.  She said we can keep our May 3rd appointment, and she can also come and visit Phoebe for her check up there, rather than in her W.C. office on May 9th.  She then told me I have to call the infusion center to schedule the next 2 treatments.  Friday was kind of a busy day, and I didn't get around to it... though to be honest I was kind of avoiding it.  I'm really, really scared of how these infusions are going to go and I don't wanna do it.  But on Monday I will make myself call.  :(

I'm scared of these medicines and upset we have to do them and scared that they are going to make my happy baby not feel good or do something weird to her body.  It seems like Phoebe is doing so well right now!

I've been trying to video Phoebe giggles.  It's basically my favorite sound in the world.  I'll put them here to cheer you up.

Cordelia was trying to wrap her in a blanket and Phoebe was not cooperating.

Here is a ridiculous video of Phoebe playing the piano/organ music with her feet.

Remicade Approved

Phoebe got approval for 1 year of Remicade!  Phew.  Apparently they are mailing me a letter.

EDIT: Letter actually arrived later today.  It's a little confusing.  It says they approved her for something, but denied her for something else.  The only difference I can see is that they put a time limit on it, of one year, while the original (denied) request was just left open-ended.  Which is apparently a pretty good offer, from what the guy who called me said.  The letter also said that she could have infusions 2 weeks apart, then 6, then 8... I think Dr. B was talking about every 4 weeks after the initial 2 weeks, but we'll see what she says.  Overall, seems good.

***
On the boards, moms were discussing how they have more than one child with JIA, or children with different auto-immune conditions.  Man, that is kind of alarming.  I was really hoping that with Jason and I having such a huge mix up of backgrounds (Greek/Scottish/Irish/English/Croatian/Polish-Romanian Jewish/Japanese) that'd we'd totally luck out and have a great genetic combo.  At least we know we make exceptionally adorable children!

Yesterday Phoebe was going around and giving hugs to everyone and Cordelia was rejecting her and not wanting to be hugged.  I said that she didn't need to hug her, but she did need to be kind and acknowledge Phoebe, with a hug, handshake, or high five.  Cordelia said that Phoebe was "icky" and that she was a scared to hug to her.  Eventually, she came out and said that she did not want to hug her because she would get arthritis. Now, I think that on one level Cordelia was just being rude and not wanting to be nice to Phoebe because they generally interact that way, but it was still insightful to hear her voice that concern.

I assured her that you can't get arthritis from another person, like germs.  Instead it is a problem that happens inside our bodies, that part of Phoebe's body isn't working right so it gave her the disease by making inflammation by mistake.  I told Cordelia she would not get arthritis..... though now that I think about it, I just hope really, really hard that will be true.  In the end, Cordelia suggested she give Phoebe a kiss, which was also acceptable.

I think Phoebe overall tends to be much more affectionate because she can observe Cordelia.  She is definitely much more aware of emotions and watches to see what is going on, while Cordelia is still extremely ego-centric.  Which I know is a developmental stage, but by being a second child, Phoebe is getting a lot more practice than Cordelia at an earlier age.

Though originally, I had thought that by being a second child, I wouldn't have to worry about her as much. You know, with the first one, everything's new and you worry soooo much, but by the time, you have the second one, you can relax a little bit, because you know they'll be fine...... But NOPE!  She was totally NOT FINE. NOT FAIR!😡  But again, just have to be glad we caught her disease so early.

The other day Cordelia got in trouble with my mom for putting legos in her mouth to break the pieces apart. She knows she is not supposed to so my mom took the legos away.  Cordelia started to cry.  I was giving Phoebe a bath, and my mom checked in to relay what had happened and why Cordelia was wailing loudly in the living room.  Phoebe listened to the story.  After my mom had left, Phoebe turned to me and said something like "Mom Mom, DeeDee (Cordelia)"  Then she put her fingers in her mouth and then made her fake crying noise.  She was totally retelling the story she had just heard!  Such a smart little baby!    My mom and sister left today and Phoebe is going to miss them a ton.  Her last words falling asleep were "Mom Mom" and she said it again as soon as she woke up!  We miss you, Mom Mom!

***

Tonight was Phoebe's 8th shot of methotrexate!  We managed to have it all prepped before Phoebe really caught on too much, although I was letting her play with bandaids.  I think that really helped because she didn't go through that stage of realizing what was going on and then having to wait, while whimpering sadly.  I still sat her down and told her it was time, right before and she still gets scared and cries.  But we got through it quickly and then watched Cookie Monster.   Right before the shot Cordelia was going around telling us all to "Stay Calm," and then after she came and gave Phoebe an unprompted hug, which was REALLY nice after that conversation yesterday.

 Phoebe did not want her ice cream, which was tricky because that was what I'd put her folic acid in it.  So I switched to yogurt and even then it was a battle to get her to eat it.

Ok, this was just kind of a rambling journal-y post, I don't have any pictures or anything else to share. Good night.

Arthritis Lunch

Arthritis Warrior!!!!

The Arthritis Foundation had a lunch for its honorees on Saturday, at an Outback Steakhouse.  There were about a dozen or so people there, not too big.  We gathered on the patio and they had a table with lots of give away stuff like buttons and flyers.

I met the lady I spoke with on the phone.  She had a very familiar voice to me and I finally realized she sounded like a teacher at a another school that I'd known.  It had been driving me crazy because I couldn't tell who she reminded me of.  She was very nice, and also introduced us to a gentleman who helps with the Arthritis Kid Camps, which may be something that Phoebe can do when she's bigger!  He also said that Dr. B helps with those and reiterated what a great doctor she is.... which I totally already know! :)

We got to meet the other youth honoree, a boy who is 12.  He was diagnosed at age 6.  His mom and dad were both super nice and the mom had brought a bunch of photo albums from the Camps.  They look really fun--- swimming, horse back riding, group activities.  He also had a bunch of uplifting notes from counselors and peers, so they must do some sort of exchange where you get little letters from everyone.  I love that.  

The mom and I of course talked medications.  Her son is on Remicade and doing well.  She said they did two shots of Humira and then had to give up.  (I really can't believe how terrifying the shot is! How can it be so bad??? It just blows my mind.)  He is also still on mtx, but that is no big deal any more.  They have Kaiser and get treated in Oakland.  I asked if he gets sick a lot or misses school due to the immunosuppressants, and she reported actually he has been very healthy since starting everything!  That was really great to hear.  We exchanged contact info and I look forward to seeing her again at the walk.

There was a "kids' table" very thoughtfully set up with puzzles, mega blocks, arthritis foundation coloring books and markers.  All the other patio tables were high with bar stools for seating, which was not going to work for Phoebe, so we kind of took it all over so we could eat there too and have a high chair that could reach a table.  But really, the other boy was old enough to entertain himself, so really they'd put everything out for Phoebe and Cordelia.  I had also packed a bunch of go-to toys (Cordelia had a tupperware of legos), but that was incredibly sweet of them to bring all that stuff.

They gave us appetizers and then there were a couple of "speakers" sharing their stories.  They are also on the website, so I was kind of familiar with them too.  Again, just talking about the importance of getting involved in the community and being able to benefit from the support of other people going through the same thing.

While people were talking, Phoebe was trying to upstage them with her cuteness. My mom kindly carried her around to look out at the parking lot to look at cars and birds.  When they passed out some folders, they and invited Cordelia to help distribute them.  That was nice! :)

They talked a bit about fundraising, and for example, one woman's company will match all of the donations brought in.  That's pretty cool.  Other suggestions were having a yard sale, etc. I need to email more people and try and get more people involved at school.

It's funny, it doesn't sound like many of the people, even those from the foundation are very adept at using social media.  LOL!  They were saying, you can use it, if you are familiar with it, but none of them really were.....  Jason was joking after, well, it IS an "old person" disease.  Ha ha ha!  They were very excited that we were going to have shirts and pretty much went crazy for the colors, which are the arthritis foundation colors.  (Which I had eventually figured out a while ago, but when I first saw the logo I hadn't put that together myself.... so even more extra points to Jonathan for thinking of that!)  Maybe they were even a little surprised.... do people not make team shirts?! That was a really fun part of the Cystic Fibrosis walk, seeing how all the teams were color coordinated!  Well, maybe we are just going all out!  I don't like to do things by halves!  😊

Phoebe's rheumy mentioned in a message that she was going to be at a conference this weekend.  In one of the facebook groups, someone posted a picture of all the pediatric rheumatologists doing a line dance!  It was pretty poor quality/blurry, but sure enough, I saw her dancing away!!  Interestingly, they are almost entirely women!  I am so grateful to these women for caring about rheumatology AND children.  There are so few of them, there needs to be more!!!!

Not sure if the link is public, but you can try to check it out. It looked really fun and hopefully they are all there learning great stuff and sharing the knowledge.  :)

 https://www.facebook.com/angelayoung/videos/10214021620271388/UzpfSTIzNTgyNTYwNjUyNjgwMjoxNTQ3OTkyNTUxOTc2NzYx/?sorting_setting=CHRONOLOGICAL

Phoebe was super cranky all day today (Sunday)!  I hope it's just teething and the mild cold.... She didn't sleep well last night and kept waking up.

PT Outdoors

Phoebe had PT this afternoon.  Cordelia has a cold and didn't want to go out, so she stayed with my mom.  So it was a little nice to have the one-on-one with Phoebe.  I asked if Phoebe's knees might be looking more "full", and she agreed, maybe, and that it would be worth mentioning to our rheumatologist.  😓 It is kind of hard to tell with her chubby baby legs, so I'm a little worried, but also second guessing myself.

Phoebe rode on the little train roller coaster a lot of times, went on the slide, and then Tiffany wanted her to work her knees by doing even more stairs.  So we went for a walk around the whole building, exploring new places.

We went into an area of the adult PT program, which had lots of exercise bikes and weights and massage tables.  Phoebe got to practice on some stairs.  One side going up was steep steps, and the other side was low-riser stairs.  Phoebe kept trying to turn around to go down, which is how she knows how to go down stairs by herself.  Tiffany was encouraging her to hold her hand and hold onto the railing and walk down the stairs normally.

Then we went outside.  I had no idea, but behind the medical building is a beautiful garden paradise with streams and fountains and trees.  Wow! It was so enchanting.  We saw some ducks sleeping by one of the fountains.  Then Phoebe did her squat and stretching exercises by putting sticks and leaves in the water.  The sun was shining, but there were so many trees, there was lots of shade.  Basically, it was perfect weather and so magical.

Then we walked up some steps by a little cafe, and around the building, and practiced going on uneven surfaces like up a grassy hill.  Phoebe started seeing all the cars in the parking lot and saying "Mama!", thinking they were our's.  But we finally made it back to the front and she definitely recognized my car and got very excited.  It was a new way to do PT, and very fun!

 Look at this beautiful child!

I got a call back later in the day about Phoebe's infusion.  They asked, "Can you come in at 12 instead of 1?"  I said, "No, we are trying to reschedule for a different day entirely!"  Anyway, there still aren't any openings, so my new instructions are to call on Friday the 20th and see if there are any cancelations for the week after.  Otherwise, we have May 3rd at 3, if Dr. B doesn't think that's too long to wait?!

I sent a short note to Dr. B with that update and mentioned we are watching Phoebe's knees.

The Uveitis Facebook group put up a general post of "Comment with how long your child has been fighting....."   People's answers ranged from several months, 1-2 years, to 13, 15, 20 YEARS.  When we were still figuring out Phoebe's diagnosis someone mentioned to me, "well, maybe it'll just be something to put on her college application essays."  I am still just wrapping my head around the long term-ness of how our life has turned upside down.

Timeline check in: It is 12 weeks ago today that the orthopedic told me "juvenile arthirtis".  7 weeks ago today, Phoebe was diagnosed with uveitis.

My mom and sister are still staying with us.  Phoebe is OBSESSED with my mom.  We have also discovered that Phoebe also now says "Mom-Mom" when she means Elmo.  Isn't that cute?

Scheduling Remicade, Part 1

When I left for work this morning, I realized I already had a voicemail!  It was from the Infusion Center at Stanford saying they had scheduled Phoebe for her "next" Remicade infusion for MONDAY and her second infusion for May 3rd, and to call back if that needed to be changed.  Holy crap, that's so soon, I thought!  Would that be enough time for the insurance approval?  I definitely want to make sure I have that in writing, so I called them back as I drove along, but it went to a hospital menu. Of the Children's Oncology department, because, you know that's where infusion stuff happens a lot.  It being super early, they actually weren't even open, so it just went to voicemail.  But just hearing "children's oncology department" first thing in the morning definitely freaked me out and I'm feeling pretty scared of going to the infusion center and seeing a bunch of seriously ill children.   I don't know how my heart will take it. 💔

But I am just getting ready to suck it up and go through with all this.  And quite likely by myself too...

Monday at 1 pm would be a rather complicated time.  Jason and I already are taking some time off at the end of next week as his parents are on their trip.  I could possibly take Cordelia to school Monday morning, leave after a few hours and then drive Phoebe to Stanford, and have my mom pick up C at 1 pm..... Jason would like to come with me, but he is having a very busy time in his office and getting more time off would not be ideal.....

After work, I started making more calls to Stanford and getting sent to different people's voicemails.  Even though the menu took me to Oncology, an oncology person called me back and sure enough, I needed to be talking to rheumatology people, but the phone menu did not give me that option.  She was very kind and helpful though and took a look at our insurance and was optimistically predicting that since an infusion is "outpatient procedure" that our insurance should cover it.  She gave me a several phone numbers of people to call to find the right task team and scheduling departments.  I tried calling one person, but she was out of the office all week, so then I just called rheumatology and they connected me to scheduling.  That person was less optimistic about us getting insurance approval and said that we would need to wait and that it would take several business days to go through.  I said that was what I figured, so was my appointment on Monday too soon.  I didn't want to get stuck with a denial and a big bill.  She said that if we did treatment and then got denied, the hospital would cover it, but then we would not be able to move forward with subsequent treatments unless we appealed and got approval.  She asked to call me back in an hour.

Later, I got a call back from some other man, Will, who was handling our case.  I think he was the other lady's super visor.  He'd been emailing with Dr. B all morning about arranging our appointment.  Dr. B had requested that we get an appointment, which usually takes  a while, but there was a cancellation, so the schedulers just gave us the very first appointment.  So even she was shocked they gave us an appointment so quickly, which would not really be enough time for insurance approval.  So Will was asking for Dr. B, if we were ok with moving our appointment to later date.  Um, YES!  How about a week later, when Jason's parent's are back to help out? :)

From there, I called rheumatology scheduling to ask for a different date and the only thing they had available was two appointments, one at 5 pm and one at 6 pm.  I said those times sounded a little bit rough to me, for a 1 year old, and she agreed.  The lady said that she was going to ask if they could get another room that week and is going to call me back tomorrow.  So we will just have to wait and see what she says.  Stay tuned!

Even if she does find one for the week of the 23rd, Jason's boss is gone all that week, so it will still be just as tricky for him to make it out.  The first infusion appointment is going to be super long (4-6 hours) because they will want to observe her afterwards to see how she reacts.

I kid you not, when I was done on the phone, I had seven post it notes with NINE different hospital phone numbers.

Arthritis Walk Honoree + Remicade in Our Future

Phoebe the Arthritis Walk Honoree!

Yay, it's on the website now!

Click here to visit the page that has bios for her and the other 3 Honorees.  I sent them a couple of pics of her (including hospital and daily life shots) and they went with one from the MRI.  The lady I've been talking to said Phoebe is just too precious.  She does have quite the sparkle in her eye, despite being at the hospital!  I thanked Dr. B for nominating her to be the honoree and she said Phoebe was the first person she thought of.  Which doesn't, um, exactly me feel great, because I'd rather not be in this situation at all, but obviously was very nice of her.

  The adult honoree says her husband describes the biologics as "the juice."  Well, that's good because Phoebe is going on the juice.

We went to see Dr. C for an eye check and, a bit frustratingly, she doesn't fully agree with Mr. Uvieitis Specialist Dr N. about the state of inflammation.  She said every doctor is different, so he assessment may be based on what he thinks of as concerning, and maybe to him +1 cells in the eyes may be less concerning, but to her it still indicates a problem.  But Dr. N did kind of say that he thought the inflammation was better with the understanding that Phoebe would still be going on a biologic.  It is kind of confusing having mismatched opinions about the severity of her eyes, but basically everyone is in agreement in pointing us in the same direction---- that Phoebe needs stronger medicine.

I went home and emailed Dr. B, our rheumatologist and, after speaking by phone today, we are going to move forward with Remicade.

She is going to put in for the infusion center to contact us to make an appointment and then from there we will require Insurance Pre-approval.  Some insurance companies want you to try Humira first before they will approve Remicade.  Remicade is also technically not approved for use in children.  Dr. B says this is because the study they did was poorly conducted, and that the medicine still works. Humira and Enbrel had better conducted studies, so they are approved medicines, but Remicade is still just as good.  However, because the chimerich antibodies, it is more likely for her to develop antibodies against it.  At which point, we would probably have to go to Humira.

She will have 2 infusions 2 weeks apart to start, and after that every 4 weeks.  Saturday infusions are also possible and we can get labs done at the same time.  A child life person should be around to help soothe Phoebe.

I asked in the Facebook Groups for people to share their experiences with Remicade vs. Humira, particularly for toddlers.  I got about 30 responses from lovely helpful people.

Overall, I feel much more reassured. Many people said that Remicade is working well and reiterating everything I had heard about what a painful "beast" Humira is.  A few people did say that a few moments of pain vs a whole day being consumed by an infusion is not the best trade off for them, but others said that even if it is inconvenient for the parent, it was much much better for their child.  Even more encouraging:  I heard that because they premedicate with tylenol and benedryl (because of the chance of allergic reactions), the benedryl makes their child so sleepy, they basically dozed through the whole thing.  Fingers crossed that can be our experience.  😮

Someone else warned me that despite getting preapproved for Remicade, Blue Shield later tried to deny them and so was sending them $50,000 bills over 8 months while their child was getting treatment.  But eventually they ponied up and paid for it.  So I will definitely be getting everything in writing because that sounds terrifying.

Anyway, I still feel kind of sick to my stomach about having to go down the route already, but here we go.

Oh and I guess while I'm posting, I'll write about last night's shot.

Jason is getting better about doing the shot but Phoebe is figuring out that we are going to do it still faster than I would like.  We did test out showing Phoebe all the steps that one time, prepping the syringe and everything, but overall, I think that just extended the process and wasn't great for Phoebe's sense of anxiety about the moment.  Ug.  I wouldn't want her to end up like one of those children who starts vomiting before their shots.  So now we're just trying to have it ready to go, then we tell her it's shot time, and she gets to pick a bandaid and help wipe with the alcohol and then we do it.  But it's still so scary for her.  Phoebe has started saying "ow" ALL. THE. TIME.  If something so much as bumps her lately, she says "ow", even if it doesn't actually hurt (or hurt much).  I think it's definitely because of the shots that she feels so vulnerable.

My mom and sister are in town helping out with babysitting as Jason's parents are on a trip, and my mom got a bunch of sprinkles to put on our post-shot ice cream. Phoebe ended up loving the butterfly sprinkles even more than the ice cream!  She crunched them up!

Phoebe also has a runny nose, but no fever.

Also, she is teething like mad.

Team Phoebe Steps!

Ok, so I've got all the fundraising basics together!  They still haven't posted her bio as an "honoree" yet, hopefully that will happen soon?  In the meantime, they've goaled me at raising $2500 for the arthritis foundation, which kind of feels like a lot, but hopefully we can do it!  Today I also gave a presentation with another teacher at an Early Learners Conference for like 65 people.  That's the biggest group I've ever talked in front of before!  I am also organizing an Earth Day neighborhood clean up for my home owners association.  Oh yes, and I need to start thinking about Cordelia's 5th birthday party.  How the heck did I get so busy ha ha?!

The Arthritis Foundation is also having a lunch on April 14th that we are invited to, so then we can meet some more people who are going through the same thing as us!  Also, at some point I might have to give a speech!  Not sure if that's then or at the Walk.  When I had to write a bio for Phoebe it was really hard to keep things short-- apparently I have a lot to say about our experience so far already!

Phoebe's Uncle Jonathan designed this AMAZING logo for us to have team shirts.  LOOK at how awesome it is.  Also, he made it in just one day! I love everything about it.  I love the colors, I love the phoebe, I love the little birdie foot prints and then the image of the bird looks like it's taking flight!  Yes, yes, yes!  Take flight, my little bird!  Thank you, Jonathan!

Click here to join Team Phoebe Steps and help walk to cure arthritis!

And click here to sign up for an amazing Team Shirt !!!!!

Spring Break!

As I said in the last post, we have at last made it to spring break.  Ahhhhh..... (That is a sigh of relief, not a scream lol)

We are just taking some time to relax.  Jason is having a busy time at work, and the girls and I are mostly just vegging at home.  We have a playdate later in the week and I think we'll go to the park Friday, but other than that, it's nice to just take a breath and be home, especially after all the running around I did last week!

Our only doctor's appointment was Phoebe's second visit to the OT Lisa.  (We were supposed to see her before, but she was sick).  She is SO nice, I really enjoy talking with her.  I always feel so inspired to go home and try stuff!

I was glad to finally consult with her about the cyst on Phoebe's hand.  I told her that it made me really nervous to massage her hand, so I hadn't really been doing that, and she said no, that was fine, if she had heard about it earlier, she would probably revised her recommendations anyway.  Phoebe's knuckles definitely still are swollen and thick.  You can see a vein running under her skin from how stretched the skin is.  😔

Phoebe was super adventurous at the "doctor's playground." She roamed the room confidently, trying all the gross motor things.  She went on the train roller coaster, but when it was time to go down, she requested "No, Mama," so that I would be the one to hold is steady, not Lisa.

Phoebe amazed me by CLIMBING UP THE SLIDE!  Way to go baby girl!  It's a really great slide, a little steep so I have to hold her hand when she's going down to steady her, but I love that she was able to go up on her own!  It has little ridges on the side so she could hold on and being barefoot gave her enough traction to go up!  She just needed a little help turning around.

However, the one place Phoebe still struggles most is her knees.  She can walk and she can crawl and she can squat, but she cannot handle big steps.  We have a tall stepstool in the bathroom for the kids to reach the sink and Phoebe can get one leg up, but she cannot bring the other leg up and raise herself to standing.  She struggles on things like ladders.  It's like her joints lock up.  I hope she will get stronger!  Her knees are still looking good, not obviously inflamed, so I hope it's just a strength issue and not from damage to her cartilage (or returning inflammation.)

The square swing was up, not the rectangle one.  Apparently the square one has more instability, so if Phoebe goes on it, she needs someone to support it.  Cordelia LOVED it and was so excited spinning around, exclaiming "It's like I'm flying!"  Later, the girls when on it together, which was soooo cute.

For her hand, Lisa made a little compression tube sock mitten, with a little hole cute for the thumb for Phoebe to try and wear, but Phoebe immediately wanted it "OFF".  I wore one too, but she was still not interested.  Lisa is going to order an even smaller size, but we'll see if Phoebe will wear it.  

Lisa made a tub of warm water for Phoebe's hand.  Phoebe got to play in the water and pick out sea animal beads and marbles.  She uses all her fingers, which is great.

We recreated this activity at home the next day.  I added soap to make it bubbley and trickier to find the things hiding in the water.  Cordelia then wanted to wipe the plastic sea creatures off of suds and transfer them to a clean tub of water so that they could "breathe".

We have just been enjoying quiet time the last couple of days.  When I was putting her down for a nap, Phoebe just kept giving me little kisses.  It was the cutest thing.  This morning, Cordelia, Phoebe, and I blew bubbles in the house with their new big bubble wands from their Meme.  I would hold the wand up to Phoebe's mouth and then she would blow and all the bubbles would go right in my face.  This made Phoebe laugh hysterically.  So sweet.  Then we danced around to Beatles songs, starting with "Here Comes the Sun" and "All you Need is Love."  Cordelia was getting really into them and later in the day I heard her wandering around singing, "Whisper words of wisdom: let it beeee".  

Anyway, it was just a really beautiful, sweet morning.... need more of them like that, where we're not hustling to get out the door.  Ahhhh.

Oh! And another exciting thing has been happening the last two days.  Phoebe has been getting out of bed all on her own, as soon as she wakes up, instead of always calling for me to come in.  She has been gathering up her blankie and a stuffed animal, usually her dog, and then going and tapping on the door and calling "Mama!"  SO CUTE.  She started after a nap, and then this morning just took off down the hall as soon as we opened the door! Wowza!

And as today was April 4th (posting late), there was another significance to this date worth noting on the blog.  If Phoebe's referral didn't get processed as "urgent," TODAY would have been her first rheumatology appointment.  TODAY.  We could have been waiting all this time to start her treatment, maybe continuing with just ibuprofen like the orthopedic said (which was no where near enough to help her).  

On the Facebook group, someone said that after going from doctor to doctor, an orthopedic had just finally diagnosed their 7 year old with JA, but then was told 6 month wait to get her son an appointment (in Canada) to see a rheumatologist.  Yikes.  Everyone was telling her to get another doctor to flag their case for attention, or to consider going elsewhere, even if it was further away. 

 Again, just so so thankful that we are able to take care of Phoebe and that we have a wonderful pediatric rheumatologist close by.  And even Palo Alto, while not my favorite drive, is far from impossible.

Stuff is in the works for Phoebe to be an honoree at the Arthritis Walk! Stay tuned for details!  

Eye Exam Under Anesthesia

Phoebe's procedure was listed as a "Bilateral, EUA, Fluorescein Angiography, Fundus Photus".

Bilateral- both sides.  EUA - Examination Under Anesthesia, Fluorescein Angiography- the dye that highlight the cells in your eyes, Fundus Photus - photography of the back of the eye: the back inner wall, the retina, the optic nerve, and retinal blood vessels.

Okay.  So here is how the day went.

Phoebe managed to sleep until 7:30 and immediately woke up asking for milk.  I tried to giver her her regular water bottle, but she rejected it.  She had had milk last night in her bunny sippy cup, which is what I was pretty sure she wanted.  I had rinsed it out the night before, so just filled it up with water.  She doesn't really know the difference in what she is actually drinking yet--- she just wanted the cup.

We had a fun bath and then played until about 9:30, when she took another nap.  She got up around 10:30 and we were checked out and arriving at the Children's Hospital by 11:30!  Everything worked out perfectly.

When we got there, the waiting room was much more crowded than the last time, when we were arriving at 7:30 in the morning.  We were told straight away that they were already delayed.  Now we were on what one of the nurses later described as "hospital time", basically you just had to hurry up and wait. And wait we did.

Phoebe passed the time playing with toys, watching Mickey Mouse, and coloring at a table with some big girls.

At some point a man came and told us it was going to be another 45 minutes, but it was definitely over an hour more until we got taken in the back.  Then we got to wait in the exam room for a long time.   This time there was the correct style of "crib" gurney, though it was no where near as comfortable for me to sit on with Phoebe in my lap.

Phoebe got weighed, breathing listened to, and they checked her oxygen levels checked with the little band-aid thingie with the red light sensor attached.  The nurse gave her some Sesame Street stickers.  We met the same Child Life person, Christine, that we had last time.  I was pretty excited to see am familiar person, especially as I had liked her a lot last time.  She didn't quite remember Phoebe right away, but then she said she started to remember.  I'm sure she's seen a lot of other toddlers in the last month.  She gave us bubble tubes to keep in our room and gave Phoebe more stickers.  She got a mask for Phoebe to play with and we practiced putting it on her dog and baby doll, and made it smell like watermelon.  We had actually been left with the mask last time and we weren't sure if we were supposed to, but we took it home.  This turned out to helpful because I brought it out again this week and played with it and reminded Phoebe that it goes on her nose.  So hopefully she was able to feel like the mask wasn't so scary and out of the norm.  Later, she came back and brought Phoebe a toddler toy, a plastic book that had buttons and played nursery rhyme music whenever you turned a page.  Phoebe liked that quite a bit.  Eventually she came back one more time because her shift had ended and she said another Child Life person would come along for the separation, but I don't think anyone actually ended up coming.  I would not have been super thrilled to have a brand new person at that moment because isn't their whole purpose to build a relationship with the child before that transition?  But I totally get people needing to clock out and go home.  I think shortly after we got the room, our nurse's shift also ended and we got a new one, but both were fine.

It had a big tv, so we watched some Paw Patrol that was on live tv. We've never watched it before, although it is super popular at school.  Jason and I were unimpressed and Phoebe honestly wasn't very focused at that stage.  Later we searched their movie options and Jason put on Disney's Robin Hood.  He said he used to love to put it on when he worked at Camp, because although kids would protest at first, they would then all watch it because none of them had seen it before.

At some point, a different man came and told us it would be another 45 minute wait.  He gave us two $5 coupons to the cafe for later.  He said that Dr. N's patient before us had made it in, and as soon as they were done, they'd prep for our turn.

A nurse came in and told us we needed to do a lot of eye drops to start dilating Phoebe's eyes.  She was a little surprised and then very grateful when I offered to do the drops myself.  She said that she was great at IVs or injections or whatever, but eye drops were very difficult for her.  It sounded like Dr. N's previous patient was maybe a 3 year old boy and she hadn't been able to successfully give him the drops, so they'd have to do it during the procedure, as he wouldn't cooperate.  Poor kid.

Anyway, I did some initial drops, and then she came back and I did a series of 3 eye drops.  Then she came back two more times every five minutes and I did those 3 eye drops again each time.   At least one what the red lid bottle of cyclogyl we have at home.  So hopefully Phoebe's eyes were good and dilated by the time of her procedure.  These drops were all more liquidy than the hourly Lotemax gel we use; Phoebe did not like getting the drips on her face.  Also, they were smelly and probably stinging.

After more waiting around, Phoebe got very tired (and no doubt blurry vision), and just wanted to cuddle up.  She actually fell asleep in my arms, exhausted.  While I was sitting there scrolling Facebook, I happened to read about some extremely SAD news about someone I don't actually know in real life, but it was really terrible timing and I was just crying, holding my sleeping baby with the Robin Hood "Love Goes On and On" song happening in the background.

Love
It seems like only yesterday
You were just a child at play
Now you're all grown up inside of me
Oh, how fast those moments flee

Once we watched a lazy world go by
Now the days seem to fly
Life is brief, but when it's gone
Love goes on and on

Love will live
Love will last
Love goes on
And on and on

Once we watched a lazy world go by
Now the days seem to fly
Life is brief, but when it's gone
Love goes on and on

(I'm crying again just thinking about it)

Then the nurse came in with some medicine for her, so we had to wake her up:

We again got offered the midazolam sedative drug, that has a yucky after taste and makes you feel relaxed and not really remember what was happening.  It made me feel so nervous--- I hate how little Phoebe can understand of what's happening to her.  I want to help her make sense of it all.  And yet, if we have to do this again any time sooner than expected, I don't want her to be traumatized either from having a really painful separation.  Anyway, Phoebe still seemed like herself after she had it, so that was good.

We met the anesthesiologist, and we know the drill by now, so we weren't super concerned.  The only thing of note she said was that she was probably going to put a breathing tube in Phoebe's mouth/nose/throat (not sure which exactly), because with Dr. N examining her eyes, they would both be up doing their work in the same area and there wasn't enouch real estate for them to share and she wouldn't put Phoebe's breathing at risk.

Phoebe only occasionally cried and asked to EAT.  It could have been so much worse, she really did amazing.  I said, "I promise we will eat as soon as we're done at the doctor's."  I didn't want to directly tell her, "No you can't have food right now".... tried phrasing it more positively.

At some point we were told that Dr. N or someone would stop by our room before the procedure but that did not happen, because then all of a sudden they were about to be ready for her. The OR nurse had come in, but not the doctor.  We mentioned we'd thought we were going to see him, and they said they could call him in, but as we didn't really have any questions before hand, we said it was fine.  We'd just be waiting to hear what the exam revealed.

Phoebe transitioned really well.  The anesthesiologist put on Mickey Mouse club house on her phone and went straight to the Hot Dog song that Phoebe already loves.  Excellent choice there!  Phoebe got to hold the phone and was super happy as she was wheeled off.

I cried a little bit, but by then Jason and I were both super hungry (I can only imagine how Phoebe felt) so we were just so happy that things were finally in motion.  It was 3:30 then.  We went down to the desk and the board where we could watch for it to say #28, KATA, PHO  and tell us when her procedure was in process.  We gave our cell phone numbers for them to call when she was done.

We went to the Harvest Cafe and had some lunch.  The hospital is GORGEOUS.  I really can't say enough about all the little details that went into it's design.  Birds on the ceiling, ocean mosaics on the floor, little animals here and there.  Phoebe saw some statues of a raccoon family as we were leaving and thought they were cats, but they were so cute.  Even since last month, more of the outdoor areas had been completed.  We could see a huge park outside, with a big play structure that looked like a giant tree stump fort and this amazing, powerful stone wolf to climb upon.  Cordelia would have lost her mind with joy playing in this magical haven.  I can't help but think of how proud all the construction teams to work on this project must be.  It's really wonderful.

This was one of the few pictures I could find on google,

 it's still so new, there's just the promotional photos.

Phoebe's procedure had 2 hours blocked out, but I didn't know how long it would actually take.  I messaged back and forth a bit with another JIA/Uvietis mom who is in SoCal.  It's great to know we are not alone and to feel like there are people I've never even met sending us all this support.  We talked about Remicade vs Humira, and how difficult insurance companies can be about them.  I asked her how important she feels "bedside manner" is in a specialist because Dr. N had not impressed me much in the empathy department, and Jason was really unimpressed from what I'd told him and  now the doctor not even showing up to our room before the procedure (after someone had told us he would) did not help.  She said it is a common problem as they think they are so elite.  But if we felt he doesn't listen to us, we should also look into seeing someone else.  I was mentally preparing to make sure he knew were going to decide with our rheumatologist over which drug to use, even if he got pushy or something.

After 5, I looked at the board and it said Phoebe was finished and right then Jason got a call that we could be brought to a consult room to see Dr. N.  We went back to one of the rooms with the amazing Charlie Harper animal print couch.  We waited in there for a SUPER long time.  Jason and I played a Disney Movie vs Pixar Movie elimination bracket game.  My winner was Beauty and the Beast and his was Lilo and Stich.... I think we both had The Incredibles as our #2.

Eventually the nurse came back and was like, "You guys are still in here? I tried to call you that Phoebe is in the recovery ward now (...there was no cell reception in these rooms).  Did the doctor never show up? That happens sometimes, they get interrupted and can't make it over here.  We'll call him for you, but you can go to Phoebe now"  

😡 😡 😡 grrrrrr Dr. N 

Anyway, we got brought back over there, along with another family.  I was scared Phoebe might wake up or something without us, if she had been waiting long, but she was sound asleep for a good long while, even after we came.  They had tucked her in under her blankie, which was sweet, but so funny to see as Phoebe only uses it all balled up for comfort snuggling.  She doesn't actually like to be covered up to go to sleep.

Dr. N came and met us by her bed.  He was looking rather rushed, still in his surgical scrubs and hair net.  But I was happy, he was much more engaging to talk with (as opposed to being super focused on typing notes in his computer).  I mean, I still have some reservations, but overall, I'm happy with how the conversation went, especially since he was telling us some better news.

Phoebe's eye inflammation is better. (!!!!!!( He could see signs of past inflammation but he did not think that her eyes were inflamed still.  So Mtx is working, yay.  He said he spoke with Dr. B this afternoon, and that she said we were resistant to trying adalimumab (Humira).  I repeated what she said about it being like "injecting broken glass" and he was like "Hmm.  That is not so much what my patients tell me."  (but I am not sure how many of his patients are pediatric patients)  but he said he thought it would be fine to go straight to infliximab (Remicade) as they were both used for treatment, though it was his opinion that Remicade had more side effects.

I said, "If it sounds like her eye inflammation is improved with mtx, do we have to start a biologic?"

He said, "Yes, because it's needed to treat the arthritis in her joints."

I said, "Dr. B said her joints were actually doing better."

He said, "But she said that she still had fluid...."

Okay, yes, the synovial fluid cyst on her hand.  But that showed up only 2 mtx injections in, it hadn't had time to build up yet.  Yes, her knuckles are still swollen though.....  But maybe Dr. B can reassess if her eyes are not so bad, and we can wait longer before trying a biologic.  (?) 

The more I read about them, I basically want to throw up about having to decide between them.

I have started joking with Jason that if she does go on Remicade, Phoebe will definitely be guaranteed mutant powers, as she will have mouse antibody powers.  

Dr. N wants us to continue to wean Phoebe from Lotemax.  He gave us like a 10 week plan to reduce slowly to 1 drop a day.  He said he wants to see Phoebe again in 2 months and that he would want to do this same procedure again in 6 months.  😢

By then it was after 6 pm, when he left.  I think he had a very long day too.

Phoebe finally started to wake up.  She was coughing a lot, so I think they did end up putting in the breathing tube? We got her water and she immediately wanted all the sensors and things off of her, especially where her IV tube was still attached to her hand.  She did not like that AT ALL, and kept saying OW and OFF and trying to get the band aid off.  So that kind of alarmed me beause Remicade infusions take several hours and now I'm envisioning something pretty traumatic of her crying for hours about the IV.  Oh dear.  I don't know what would be worse, a horribly painful shot or a long infusion!  I guess if Humira injections are only once a month maybe we could consider driving out there... I'm really hesitant to do it ourselves because you have to do it slow and hold her still and that just sounds like it would have such a hellish learning curve.  MTX is bad enough and that's quick.  Anyway, I just don't know what would be best for her, it's so stressful.

Phoebe got to have a popsicle and we also gave her an applesauce.  She was very hungry.  We got discharged and I drove home her home, with lots of snacks to eat.

Phoebe has been wanting to listen to a 90 second song about dogs barking the alphabet after a short little intro verse.  OVer and over and over again where ever we drive.  Finally after a long time of dogs yet again, I convinced her to listen to one of the other songs on the cd about a farm, so then she just kept asking for the cow song, as it's the first animal in the song.  

Phoebe was very hyper when we got home and wanted to play and eat.  We watched some Cookie Monster.  Jason got home with Cordelia who then also asked for food.  So our girls went to bed at like 10:30.  I felt so bad to have to give Phoebe eye drops again.

Since it was so late, I begged Jason to take some of the morning off work and go in later, but he didn't think it would make much of a difference.  

Well, Friday morning started with a major Cordelia melt down because she didn't want to get out of bed, and just wanted to stay home, where she hadn't been for 2 days, so sure enough, getting out of the house was an absolute nightmare.  Cordelia was still in a terrible mood arriving at school, but eventually got into the swing of the day.  I was kind of in a fog myself, but somehow pulled off Circle Time.

On the way home, we stopped at the store and got stuff we were low on, like milk, and I picked up things for the most last minute Passover seder ever.  Passover started that night and I didn't even have any matzoh!  I wasn't sure if I could pull it together and was considering just doing a second night seder, but I was able to do it.  Phoebe went to a doctor's appointment with Meme.... I was sad that she had to go anywhere near a hospital after spending all day there yesterday, but it was probably nice to see someone else getting the special treatment, not her.  I guess she liked the bed going up and down. 

Tomorrow we are going over to see the cousins for their Easter celebration and then I'm on spring break... after missing so much work this week.... followed by yet another week off unpaid.  So costly!  😕

But we only have one OT appointment planned for next week.  I cannot tell you how happy I am about that after this crazy week.

Sorry for the typos and grammar issues... this post was put together pretty late and I'm still tired, so not my best writing.