A Significant Day

March 28th feels like a pretty significant day to me.  After Phoebe’s joint injections on Feb 21st, we scheduled our next rheumatology appointment with Dr. B. for today.  In that time, we were supposed to be staying on the anti-inflammatory naproxen and starting PT and OT.  

Instead, two days later Phoebe got her uveitis diagnosis and everything changed.  We got put on methotrexate injections and weeks of hourly eye drops.

How much our world has changed.

Today was a very busy day.

At 8:30 we saw our pediatrician Dr. Jen.  As Phoebe had just had her 18 month physical, she said she wasn’t even going to examine her, apart from having the nurse take her weight and temperature.  After that we just got to hang out and chat and she didn’t haven any other patients there, so we got to talk for a while.  It was so nice.  Phoebe was also extra pleased because she seemed to conflate Dr. Jen with my mom, who she had just seen this weekend.  So she kept calling Dr. Jen Mom-Mom, as they both have dark brown hair and wear glasses, but otherwise look nothing alike.  But it probably helped to extra comfort Phoebe that she was associating her with someone she liked.

Dr. Jen mostly just wanted to listen and hear all the details of what has been going on, especially with Phoebe’s eyes.  She said she still couldn’t believe every time she saw the note that said continue eyedrops “Q1Hour”.  She asked who referred me to the specialist and I said I asked if we needed to see one, because I’d read it was helpful, and she was like, “Good for you!!!!”   I said, “Ha ha, yeah, I was a little proud of myself, as I’m not a pushy person.” and she was like, “I’m proud of you too!!!”  She said if I ever needed any other help getting referrals to something that she was willing to help with that too.  It was thanks to Dr. Jen that we got referred to the rheumatologist immediately, as when I first went to the orthopedic, they were making me hold off until arthritis was confirmed with the MRI.  

We talked a bit about how specialists are kind have less bedside manner.  I’m not sure why that is, but I guess the more focused and more important you become in your field, you don’t put in as much time to make the connections.  She told me about going along with a family member is having some medical issues and she was warning them the specialist might be in the room for all of 30 seconds. And then when he did come in, he sat down and said, “You have three choices.  1. You can do nothing.  2.  You can do this  one thing.  Or 3. You could do this other thing, but you’re too old for it.  So, which do you want to do?”  Woah, back up, right??  It’s a little overwhelming.

Dr. Jen filled out Phoebe’s rather lengthy forms before I left and gave me copies.  She then gave them to her nurse to fax, but I guess she didn’t do it immediately because I got a call from Stanford half an hour later saying they still hadn’t received it and needed it asap.  So I called pediatrics and had to ask them to fax it.

Phoebe took a little nap and we chilled at home and then it was off to the rheumatologist.

I am so glad of how all my appointments aligned this week because it was so helpful to see Dr. B!  We discussed if Phoebe’s uveitis needed to be treated with a biologic, which medicine was the best option.  

Dr. C had mentioned Humira and Remicade as options at our ophthalmologist  appointment,  but Dr. N had not seemed interested in Remicade and wanted to go straight to Humira.  Dr. B is going to talk to him as to why he wouldn’t want to use that because that would actually be her recommendation because Humira is so painful and Phoebe is so little. She said that people describe Humira like “injecting shards broken glass,” which pretty much made me die inside to hear.  She said that they can teach you how to mix it with lidocaine as a numbing agent, so that makes it less painful, but not pain free.  

Okay, here is some info about the drugs that I don’t fully understand.  I’m looking up some additional facts on a website, which warns that some people may find it “disturbing”. Ug, here we go:

Most drugs are made through basic chemistry... you get all the right chemicals together and make the medicine.

Biologics are called so because they based on very complicated molecules-- antibodies.  Antibodies are what go into the immune system and start attacking viruses and bacteria.    Biologic drugs create “false” antibodies to trick the immune system, so they have basically revolutionized the treatment of auto-immune diseases.

Humira is called so because it comes from the word “Human.”  It uses all human based antibodies.  However, you can still have allergic reactions to it AND your body can start to reject it.... your body will figure out Humira is not natural and start making anti-Humira-antibodies to counteract it.

Remicade is only partly human.  It uses “chimeric” antibodies that are also partially from mice.  So, like the Greek monster a chimera (part lion, goat, and snake).  Apparently Remicade is like 70% human and 30% murine  (mouse).  Because of the murine part, people are more likely to have an allergic reaction to Remicade than Humira, so it is often pre-medicated with Tylenol and Benedryl.  Remicade is also more at risk of failing and having you start developing anti-Remicade-antibodies.

Although Humira is made with only human antibodies, it still uses hamster cells in it too. (!!!)  Delightful reading, this is some crazy scientific shit, guys.  I guess if my child has to have JIA, I’m just going to be thankful that I live in a time when we have such complicated treatments, which, despite being awful, can also apparently make you much much better.

The benefit of Remicade over Humira is that it is given through infusion, once a month.  Infusions are time consuming and we would have to go out to Stanford for it, but it could even be done on a weekend.  OR if we come out during the week, we could combine it with other stuff.  We could see Dr. B for appointments the same day (as she is there more often than in her W.C. location.).  If we work it so that we come on the day of Phoebe’s methotrexate injection (she wants us to continue that for sure), we could get the shot done there, rather than at home.  If we need lab work done, we could also get that done that day (Phoebe is going down to labs every 6 weeks because her labs from Friday were generally ok).

So the benefit to our family overall is that we could make things more of a one stop shop.  And it could take some of the injection stress off us.

It does sound like Phoebe would only be doing Humira once a month as well, which is much better than bi-weekly, which is what someone told me to expect on Facebook.  And while we could do it at home, it would still SUCK no matter what.  

Dr. B said that she ultimately wants to be the one to be in charge of prescribing Phoebe’s medications, so she is going to be in contact with Dr. N.  (So I was definitely reading that “No, *I* am putting her on Humira” comment on Monday correctly.... Dr. N wants to be in charge of his patients.)  But Dr. B has done a lot more to earn my trust and respect, and I like her plan much better.  

No matter what, we have a long road ahead.  Dr. B said she typically wants uveitis patients to have “quiet eyes” with no flares for 2 years before going off of therapy. :(

The good news is, apart from her hand, she did not have any noticeable swelling or active joints elsewhere. YAY YAY YAY YAY.  So we need to keep preserving the good done by her joint injections!!

Then, as we were about to leave, Dr. B remembered something else.  She asked me if I knew about the Arthritis Foundation and that they were having a walk on May 5th.  I said yes, I was aware of it, but had kind of been thinking we were still pretty new, so maybe next year.  Well, she said that every year they have some “honorees” and she wanted to know if she could submit Phoebe was a possible honoree for JIA.  They would maybe want me to write something and put her picture on things.  And I would have to make a team and do some fundraising.  Which I don’t really have a ton of time for, but it would be cute to have some Team Phoebe or Phoebe Steps t-shirts awww!  Anyway, that was kind of exciting because I know she has other patients, and how sweet is it for her to think of Phoebe?  I said yes and that I definitely have plans to try and have sort sort of a bigger advocate roll later on.

After that, I left to pick up Cordelia from school and from there we went home briefly to collect things for the night.  Cordelia went to Meme and Papa’s house for a sleep over, extra special because her cousins were also spending the night.  I hope they eventually all get some sleep because I think they will be having so much fun. :)

Jason’s mom was feeling down about all the things we have to keep doing to our baby and being very cautious about starting any new drugs, which I totally get.  I definitely value her opinion very much-- she probably knows Phoebe the best of anyone right after me, as she gets to spend even much more time with her than Jason does because of work.  But the timing wasn’t super great because it totally broke me down.  I cried off and on the whole damn drive down to the hotel where we are staying tonight.  I can’t believe all the stuff we are having to face.  Phoebe isn’t getting any breaks, and me pushing to get seen by a specialist sooner rather than later just means we keep accelerating things to fight more aggressively, and it’s just so wearing on her little body.  

We got to the hotel and Phoebe had so much fun playing in the room.  She was giggling up a storm.  Unfortunately, our appointment is not until 11:30 tomorrow, so we are going to have hours and hours of this little girl saying EAT and not being able to feed her.  We can do clear fluids up until 9:30 so at least she can have some water when she wakes up.  They asked that she be freshly bathed prior to the procedure so we’ll pass some time in the morning with a fun hotel bath.  

This time I also knew to ask if I’d be with Phoebe for sedation, and it sounds like no.  But at least I’m prepared for it.

Ok, 12 am, time to try and get some sleep.....

Byers Eye Institute

Yesterday I got up at 5:15 to make sure we were out the door as close to 6 am as possible.  The traffic heading out to Silicon Valley is legendary.  Even though it is only an hour away, with the commute, it could take up to three hours... and if you get stuck near a big accident, you're basically screwed.  Fortunately, the traffic app Waze had some alternate streets it put me on once things started to get slow and I made it there an hour early.

Phoebe was seen at Adult Medicine, even though they also had a children's department.  As I filled out paperwork, one form said that new patients should be prepared for their first visit to take up to SIX HOURS, and that in itself was conditional that Dr. N would not get called away to deal with any emergencies.  Woah, twice as long as the receptionist on the phone had told me!

We were there about 5 hours.

Most of that time was waiting.  I had asked the uveitis facebook group what to expect that they had told me that specialists just take forever, so I was well stocked with snacks, toys, and books.  This was especially good because adult medicine had nothing fun it the waiting room.  A few parents had children with them, but Phoebe was the only toddler around and she was charming everyone with her cuteness.  She was in a great mood all day, what a trooper.  The few who asked were all so sad to hear that she was the patient, not me.

Pretending the seat is "monkey bars".... Wheee

Playing in the waiting room!

We saw a nurse who put 3 kinds of drops in Phoebe's eyes to dilate them, not sure what else it was supposed to do.  After more waiting we went in a room to take pictures of Phoebe's eyes.  She was able to mostly do one photograph, but I think it didn't turn out that great.  The other was more to try and get the back of the eye and she was supposed to stick her face forward into this dark box with a concave mirror at the top.  I guess there was a little green light inside, but you can't really tell a 1 year old to look for the green light.  Phoebe wouldn't put her face far enough in although she tried several times, and they couldn't get any good pictures.  That was expected, so it wasn't a problem.

The nurse told me to that Dr. N was most likely going to want to put Phoebe to sleep to examine her eyes thoroughly.  She told me they were trying to get an appointment at the hospital on this Thursday.  Phoebe will need a retinal fluorescein angiography.  A fluorescent dye will be injected into her blood stream.  The dye will highlight the blood vessels in the back of the eye so they can be photographed.  I am really glad that someone on the FB page mentioned this test so I was not completely mentally overwhelmed, though the thought of her having to be put under for a THIRD time already gives me that terrible sinking feelings.  But at the same time.... we're almost getting more used to this (numb to it), so I'm not even that shocked.  She's little, she's hard to examine, it makes sense.

At one point, someone came and told me half an hour, but it was probably at least another hour, if not more.  Then we got called into the exam room and got to wait in there for another half an hour.

Then we got called to the exam room next door instead.  Dr. N was in there, along with the nurse and someone observing, maybe a resident.  Dr. N was typing on the computer and didn't stop to talk to us for quite a while.  Not the greatest bedside manner overall, but nothing to really complain about if he is going to make Phoebe better.   Also he is foreign/not a native English speaker.... not judging, just observing, as I felt it informed his personality.  But I did kind of miss that empathy component.  He started by questioning me on why I felt she needed a specialist, but then agreed that she was not being treated aggressively enough and that we needed to go straight to a biologic.  I said that yes, that was basically what Dr. C had told me on Friday and I was going to discuss it with her rheumatologist on Wednesday.  And he was like, "No, *I* am putting her on a biologic." I wasn't like, trying to disagree with him.... basically it sounds like everyone was on the same page, even if Dr. C had told us to keep doing hourly eye drops for the methotrexate's full first six weeks.  He said the topical eye drops Lotemax (very low dose) were just like a bandaid and that she needed to be treated systemically.  He did not seem to be moving toward stronger steroid eye drops either, as he said those would cause guaranteed side effects.

He said that uveitis was "very treatable" with Humira. (He kept calling Humira "adalimumab" which is it's medical name, but I didn't know it.)

Hm.  From what other people are always posting about, uveitis is very tricky and stubborn to treat.  I do not feel like it is "very treatable" from my understanding.  Though I guess it is good that she is polyarticular vs oligoarticular, which is *more* likely to have uvieitis and then be harder to control.

Also, the way he just flat out said she needed to be on Humira was a little alarming... not surprising.... but still....he didn't bring up any of the scary scary side effects. And the terribleness that this drug is also painful to inject.  Based on what he sees at her procedure, he will be deciding if she will do Humira alone OR Humira and mtx together.  He said it would not be "ethical" for him to assign it without the "evidence", so I'm grateful for his thoroughness and glad to have him on Phoebe's team.

But  I think we might be looking at like 3 shots a week now.

Oh dear, all the things my poor Phoebe is going to have to endure.  I guess that is kind of what I mean when I say the empathy part was missing.  Unlike Dr. C who made us feel really cared for, even when telling us straight up to do seven weeks of hourly eye drops.  I think overall Phoebe does slightly better with female doctors too....

Dr. N was also slightly frustrated that although I knew the dosages of all Phoebe's medicines, but not their pharmaceutical concentrations.  Like, I know that I give her 4.5 ml of Naproxen twice a day, but what is its composition?  The nurse had written down all Phoebe's medicines when we had dilated her eyes, hours ago, but he corrected her and told her she should have gotten all the information then, because now he was "stuck" and couldn't make more notes.  Fortunately, the nurse called Walgreens and they were able to provide all the details.  He gave me a notebook to take to all appointments and make sure that I have everything written down.  Cool.

Dr. N was not really able to examine Phoebe.  It was after 1pm and Phoebe was REALLY TIRED, but she put her chin on the thing to look through the slit-lamp, probably for like the longest I have ever seen her do.  I bet Dr. C, with her more pediatric background, would have gotten to see a lot, but he said he couldn't really get a good look at anything.  I am hoping he just wasn't trying very hard because he'd already decided to put her to sleep, because that's close to as good as he is going to get for a while!  Hopefully he can examine her better on a return visit and isn't going to want to put her to sleep all the time.  Yikes!

The good news from all this is we are going to start to wean Phoebe off Lotemax.  He said we could go down to 6 times a day for 2 weeks, and then 4 times a day.... unless he decided to change that after he does the procedure.  That is good because I'm pretty much out of eye drops because even though they ordered us a lot more, Insurance still refused to pay for it until TODAY.

Then I got sent over to the surgical coordinator.  She said she hoped Phoebe would get the appointment on Thursday.  Eye doctors have to wait for other physicians to give up their spots and just take whatever is available.  If Thursday didn't work out, she told me rescheduling could take   weeks/months, though Dr. N did try to get his patients seen asap.  Another procedure was happening Thursday and if that was going to use any of the same stuff, we wouldn't be able to do it too.  She told me she would know by Wednesday if we would be seen Thursday!

We also needed to get Phoebe a physical from her pediatrician before Thursday so she could be approved for the procedure.

We talked about traffic/getting a hotel and how it was hard to make plans, but that was just how things worked.  She said that eye procedures don't usually get done first thing in the morning, which at first sounded like better news for potentially driving, though a hotel is probably safer.... and then I also realized with anesthesia, Phoebe will be fasting.  If they tell me her procedure is later in the day, how am I going to distract this girl who says EAT the moment she wakes up.  Oh dear!  I hope it will be early!  They won't tell me until Wednesday afternoon.  They said they are supposed to call between 1-4, so hopefully it will not be nearly 5:30 when they give me instructions like last time.

Phoebe was so exhausted, she fell asleep in her stroller while I was talking with the surgical coordinator, which basically never happens.  I let her sleep for a little bit because I wanted to change her before driving the long way home.

I got a Wednesday morning physical with Dr. Jen and talked with Jason and my work about being out. This was good because I got a phone call from the coordinator saying Phoebe was approved for Thursday.  So all things are GO!

Unless Phoebe gets my cold.

Then we will have to postpone everything and try again later.

Phoebe has sneezed several times, but I keep taking her temperature, and it is normal.  Watching her SO CLOSELY.  Jason's dad started to reserve us the hotel again, but we decided to just wait until Wednesday because he wouldn't be able to refund his points on a day-of cancelation.

Everything is so up in the air, so chaotic.

But as Jason's mom pointed out, hopefully even with yet another anesthesia procedure, we aren't going to be told anything we haven't heard before, and we will just keep moving into the next phase of treatments.

On the LONG drive home, I listened to "Breathe" by Michelle Branch over and over again.  Pete Yorn's "Crystal Village" got me through Phoebe's joint injections..... now it was good to have a reminder to just breathe while we go through this!!


Today I had one final round of shenanigans with Walgreens and the insurance, which I think was slightly called caused by human error.  I think the Walgreens pharmacist tried to run our big order or eye drops through with the discount card from before that helped us with the co-pay.  Our insurance declined it.  I tried to tell him that no, now that we'd hit our deductible, the last couple bottles of eye drops were free for us, but then I started to doubt myself and wondered if they had still been running the discount card and that was what had lowered the price even more and I still had some sort of co-pay.  This was not good because they were giving me like $1900 worth of eye drops and I did not want to pay for any of that.  😲

Anyway, I went to text Jason's mom that I was stuck at Walgreens waiting for them to call the insurance and I happened to check my phone for when Phoebe's PT appointment was for today.... and I had mixed up the times.  It was starting at 2:15.... in 15 minutes.  This is what happens when you trust your memory too much and have appointments every day!

So I left Walgreens without eye drops and rushed to get Phoebe to PT.  I called that we were running late and we made it in around 2:30.  PHEW.  I had thought it was at 2:45, but I was way off.

Walgreen called and said the insurance cleared things up and the 8 bottles of Lotemax were indeed $0.  We no longer need that discount card at all, and it had to be taken off for it to go through.

PT was fun, though we still had to be done at 3, so we missed 15 minutes.  Oh well.  Tiffany thought Phoebe was doing well.  I talked to her about Phoebe turning her foot, which I had been noticing a lot over the weekend at the hotel.  She said she thought it was probably something Phoebe was doing just to get more mobility.... and in fact Phoebe was not doing it much at the appointment except when she walked on the mats, which are uneven surface.  So that was good.

Phoebe loved bouncing on the horsie!  

I went back to Walgreens and got eye drops.  To be honest, I kind of doubt that we are going to go through 8 bottles as we are starting to reduce them, but at least now we won't be going crazy because we're about to run out and every time I had to call, I had complications getting the request filled.  OOF. Insurance.  UG.  I hate to hear what'll happen with Humira... I think that's like $400 a dose or something insane.  I know some people get rejected because their insurance doesn't want to pay.


We did Tuesday's shot.  Phoebe had our fastest recovery time yet, as we had a Cookie Monster video ready to go on the ipad right after we did it.  She loves Cookie Monster.  We realized we forgot to do the alcohol wipe again.  She'd just had a bath, so hopefully she was pretty clean. It's so hard to remember everything in the moment!

  Phoebe still has no fever, but has sneezed several times again.  Fingers crossed for tomorrow and Thursday.

I'm ridiculously looking forward to seeing our pediatrician tomorrow morning.  I feel like I'm going to see an old friend or something in all this... it feels like so long since she sent me off on this journey and her willingness to text/email/call to stay up to date with me through it all has been such a huge comfort.

Hourly Eye Drops Continue....

Dr C some how manages to be the nicest, peppiest person while delivering the most soul crushing news.  Only a little improvement to Phoebe’s eyes; hourly drops must continue.  This time she said she wanted to see us in THREE WEEKS Time.  (methotrexate typically takes at least 6 weeks to work, so this will be 7 weeks of eyedrops total)

THREE. MORE. WEEKS. OF. HOURLY. EYEDROPS.

I mean, there are obviously worse things that you can be told, but we are just so weary of eye drops.  I mean weary.....after four weeks.  I can only imagine how we will feel after three more.  When she first told me two weeks, it sounded like such an insurmountable task.  Now we are going to go on to SEVEN weeks of this hell.  

But, we are in the groove now, so I can just lie Phoebe down and she will sometimes protest, sometimes not, and then BOOM we are done. So let’s just keep going.

We also checked the pressure in her eyes again, and that was not fun. This time her pressure readings were like 19 and 24, which was higher than last time.  But Dr. C said since she was resisting so much, she was squeezing her eyes, so that she wasn’t that concerned about it.  But the FB Uveitis Group told me that under 20 was best for pressure; someone else told me that given her age, it should be under 13.  So it still needs to come down.

The problem with prolonged steroid use is that it will keep building up pressure in the eyes and can cause cataracts.  However, Dr. C said that Lotemax is best for her because of the types of topical steroid eye drops, it is one of the lower pressure causing ones-- others will increase the pressure faster.  

I am a little proud of myself.... I told Dr C that I loved her but I was also interested in getting a second opinion, maybe seeing a specialist.  (See, working on advocating more!)  I prefaced it by admitting that I have been on Dr. Google/Mommy boards now, and I’d heard other kids were getting seen more frequently when they were in a flare and that the moms thought that hourly eyedrops for weeks were still really intense.

Dr. C said she was not at all insulted.  Phew, you never know how doctors might take something!  She still stood by her analysis and treatment plan, even if it sounds extreme.  She said she didn’t think she needed to monitor Phoebe more often because she was showing some improvement, even if it was not at therapeutic levels yet.  She said she would probably be sending us to a uveitis specialist herself if Phoebe wasn’t making significant progress after this next appointment, and she was more than happy to send us to one now.  However, she was also pretty confident that they would be in agreement with her.  She looked up two people for us to get referred to and said we should go ahead and see someone before our next appointment with her.

But basically, the bottom line is: inflammation is still not under control.

Maybe methotrexate will start to kick in more, but it is look like mtx alone is not going to be enough.  So, time to start mentally preparing for Phoebe to be put on a biologic, like Humira (more injections), or remicade, which is an infusion.  These are going to be some pretty scary drugs, that I was hoping would be like a year or more (or never) in our future and now I think they’re weeks away.  We’ll be discussing it with Dr. B. at Phoebe’s appointment on Wednesday.

I also talked to Dr. C about the insurance problems with the Lotemax and let her know that we would need her to authorize more frequent purchases.  She put one of her staff on it, to work it out with Blue Shield and Walgreens and (after some phone conversations later in the day) it sounds like we are going to start being able to special order A BIGGER BOTTLE. THANK HEAVEN!!!!  Hopefully we can stop having the back and forth shenanigans!  

Dr. C referred us to two Uveitis specialists. One that she works with often, and is in SF.  The other is through Stanford Children’s and is in Palo Alto.  She was not familiar with him, but we are already set up with Stanford, so it can be helpful to keep working within the network.  Referrals got sent to both doctors.

The Stanford doctor.... Dr. N..... ‘s office called me within a few hours.  They had an opening (maybe a cancelation?) for Monday at 9:30.  Woo hoo!  The down fall is that means I have to drive to friggin Palo Alto in rush hour.  But at least Phoebe will have had something to eat first.  I was much more reluctant to do it when she was fasting for the injections/anesthesia. The receptionist assured me that he is wonderful and that we were in good hands.

Then she called me back right after we’d hung up.... she ‘d forgotten to mention to prepare myself for THREE HOURS OF TESTS for the examination. 

I am hoping that Jason can get the day off and come with me because that sounds really, really draining.  Three hours of trying to get a toddler to let you look at their eyes?!  

But I am excited to move forward with this and get all the detailed info on Phoebe’s condition.  

That being said, I really can’t say enough about how wonderful Dr. C is, even when she is torturing poor Phoebe and telling us to do hourly eyedrops.  In fact, she seems to be THE go to person in our area.  I saw a girl from my school in the waiting room and when I was talking with someone later, we realized that it was Dr. C. who had referred her child for eye surgery as a toddler.  We both agreed how we liked how she is such a straight talker, even when she is giving you terrible news. 

My only complaint is that they have an animatronic cartoonish-looking duck on the wall that can wiggle and open it’s mouth to get kids to look in an area.  This thing is like pink and orange and furry with a big plastic bill and big plastic eyes.  Phoebe LOVED it before and could not stop talking about it or pointing to it, but Dr. C didn’t turn it on for her this time.  Awww, sorry Phoebe. ha ha.

Next week is looking very busy.

Monday: Uveitis specialist in Palo Alto

Tuesday: OT and mtx injection day

Wednesday:  rheumatologist

Thursday: PT

oooofff.

I had been PLANNING on Monday being the day I would take Phoebe into the lab for her blood work.  But I did not want to do that on the same day as a THREE HOUR eye exam.  

We have weekend plans.... so that really just left this afternoon.  

So after Phoebe’s very long nap, I took her to do the blood draw.  Honestly, this is the worst part for me.  It takes so long for them to get all the little vials and Phoebe hates it.  I told her we were going to the hospital and she needed to get a little poke to test her blood to see if the good medicine is working.  She said “no.”

But we are going to be doing this every 4 weeks, so eventually we will be blood draw pros just like we are eye drop pros.  

But God how I hate hurting my baby. I held her tight and told her I was there for her and that we’d have some gummies when she was done.  

She got lots of stickers that said I WAS BRAVE.  They had cats and dogs on them and Phoebe was very happy about that.  

She is so brave.  My brave, brave girl.  We won’t stop being brave.  

We are off having some family fun this weekend.  Hourly eye drops can’t stop us!

The Ups and Downs

Ok, a few days since an update!  Mostly good news here!

Phoebe is moving with more and more confidence!

We had a great St. Patrick's day with the girls' cousins!  Phoebe had fun going in a big trampoline in their backyard, but I don't have any pics because I was jumping too. 😀 

 

On Monday, Phoebe was very active!

Look at how fast she is going down the stairs now!  Before, she could not go down the stairs on her own!

She also remembered what she learned at PT, because she started going down slides too!  First she did her little slide at our house.

Then we went to the playground at our complex, and she went down the big tube slide there too! She has finally learned how to put her feet in front of her and go down!  She was laughing as she went down!  It was so cute! She wanted to do it again and again!  

Jason got home while we were still playing and I was glad he got to see her slide! But then, going up the steps to the platform, Phoebe fell, landing awkwardly! Oh no! She was pretty upset and had hurt her foot.  In fact, for the rest of the night, Phoebe would not stand on it.  We carried her back home and had dinner, but even then after it, every time she tried to stand, she collapsed, crying and saying "Ow".  Phoebe normally has a pretty high pain tolerance, so for her to not move past this was unusual.

As you can imagine, I was so concerned to see her suddenly unable to walk *again*.  And, to make matters worse--- fresh in my mind was the THIRD broken bone in my 2 year old preschool class!  (none of the injuries happened at school, phew) We have a girl with a broken arm and a boy who just re-broke his leg... in a different spot but on the same bone.  I feel like toddlers normally bounce back from falls, but it seems like more significant injuries can happen so easily.  

We've only just gotten Phoebe walking and getting more adventurous in her gross motor skills, but she is still learning to find her strength and balance.  I'm pretty sure it was her right ankle that was bugging her.  Of course, it was probably just sprained, but it was heart wrenching to see her struggling.  I'm scared to lose the progress we've made.

In the morning, even more alarming, Phoebe started to get out of bed but then once again stopped and said ow and then wouldn't stand up again.  She still wasn't better!  Jason took the girls to Meme's house, but I messaged her doctor and asked if she should come in for a sprain or if I should try and get her seen at PT.  I wanted to figure out if I had to have any doctor's appointments and how to fit them in around my work schedule right away.  Dr. Jen (bless her for getting back to me quite promptly) thought that PT would be the most helpful and if she didn't improve to bring her by the following day and maybe have an x-ray.  It turned out PT didn't actually have a day-of opening, but good news was once Phoebe got dropped off..... she decided to start putting weight on her foot and walking again.  😑  Thanks for freaking me out, Phoebe!  Still, what a relief she finally got over it!  

I do have to note that this was about 30-45 minutes after taking her Naproxen, so that probably helped her feel better.

Anyway, I was really glad to go to work and not have to add any other doctor's appointments to my day.  It was my co-teacher's birthday and I would have been bummed to give her a challenging morning by calling out or leaving early.

There was some family disagreement over the extent that Phoebe was fine.  While I didn't think she needed to get seen at the doctor's any more,  once she decided to start walking I was much more reassured, but I still thought I could see a difference in Phoebe's steps.  Even though she was putting weight on it, she was keeping her foot very flat and, in fact, turning her foot almost to the side a little bit to distribute her weight.  So to me, I think she was not quite completely fine yet, but everyone else thought she was completely fine and told me to quit over reacting.  Here is a video from the following night, 24 hours after she fell.  Can you see the difference?  I called this blog Phoebe Steps for a reason... I'm obsessively attuned to her walk, even if you think I'm a crazy lady.  I acknowledge that even to me it's pretty slight--- I'm not saying she still needed to go to the doctor--- just that she was still recovering from the sprain.  Watch her right foot, she was walking smoother than this before.  

Sorry, but any change (like her hand swelling last week) or pain that Phoebe brings to my attention, I am going to take it seriously.  Seeing my child collapsing and saying "OW" put me on alert and you can bet I watched her like a hawk from then on.  How am I not supposed to worry about her?   Sure, I don't want her to go through life bubble-wrapped, but still I'd rather get told something is nothing than leave a new problem unaddressed.  We are only a month into this, how can I not be over-protective? 

To conclude: the good news is, Phoebe is ok and continued to do better through the rest of the week, regardless of her overreactive mommy.

*****

Tuesday Night's Injections

Over the weekend, I started playing "doctor" with Phoebe.  We got out our vet kit and used that in combination with real bandaids, real gauze, and real alcohol wipes.  I let Phoebe open and take out everything.  We had fun sticking bandaids on baby dolls.  When they got a shot, Phoebe would say "ow" and hug them and pretend to cry.  

She does not like alcohol wipes.  I think they feel cold and wet and smell bad.  She does not like to touch them or be wiped by them.  I'd like her to be able to wipe her own leg, but she is not interested in doing that.

When we talk about the shot, Phoebe says "ow" and "no".  It's pretty sad.

This time we tried to involve Phoebe in the "prep" of the injection.  I'm not sure how helpful it was either way.  She still got anxious about it, as it draws out the experience.  Jason was really great though and showed her things like "Now I'm putting on the gloves"  "Now I'm putting the medicine in."  We let Phoebe open her own band aid and get it ready.  Then we did the shot, and of course she was crying and trying to thrash around, but we took it slow, so it felt the least rushed of our 3 experiences at home.  So, not as bad as last time, but what can I say, giving your child a shot is just really shitty not matter what.  Hopefully we will all get better at this.

I have to take her in for blood work soon now to make sure the methotrexate isn't doing anything bad to her.  

****

Eye Drops.

At home, Phoebe is requesting "No, Mama!" to Jason, so I do almost all the eye drops for her.  It's ok, I've gotten really good at it.  As you can imagine after FOUR WEEKS OF HOURLY EYEDROPS.

Anyway, no one else can apparently believe we are doing that either.  

I have had all kind of continuing shenanigans with Walgreens and our insurance because they do not want to pay for eye drop bottles more than once a week, but we are going through a bottle in like 4.5 days.  One thing is that it is a gel, so the viscosity is slightly different, and the other is the insurance seems to think the maximum dose is like 4 times a day. (HA HA HA HA HA.)  At first they were able to override it a couple times, but then the insurance started refusing to pay for it.  

I asked the Uveitis Facebook group on Sunday if it was ok to wait to get more on Monday, but they said it was not ok to skip doses.  I mean, she obviously goes for a long stretch without when she's asleep but.....

Anyway, the Facebook group also seemed surprised by the hourly steroid drops going on for so long.  They wanted to know if she was also on any systemic medicine (yes, we'd just started mtx).  Moms were telling me that their child is seen weekly or even bi-weekly during a flare.  So that didn't make me feel super great.  They told me it might be worth it to see a uveitis specialist, but this is who Dr. B referred me to. I really like her report with Phoebe, despite all the awful things she's making us do.  I'll ask her about it at our next appointment.  :(

We ended up paying out of pocket to not miss out on eye drops.  For some reason, Walgreens worked out the price to be $60.  Not the full $175, but we also couldn't use the discount card from before because that was to be billed along with insurance., which had made them $25.  So I have no idea how they came up with that price.  But, thankfully Jason's parents have very generously given us a card to be used for any extra prescription costs, so that came in handy.  Thank you, to Phoebe's Meme and Papa!

The very helpful pharmacist I talked to said she was going to try to make sure the insurance should know that we should be billed for a 4-5 day supply, not a 7 day supply from now on.

When that bottle ran out, I had to have the doctor's office renew the prescription, but that had to get faxed over twice (after multiple calls between the doctor's and Walgreens to find it had gone astray.)  THEN they tried to tell me that it still wouldn't go through insurance because it hadn't been 7 days since my last bottle.  I said, no, the last bottle WE paid for out of pocket, so the insurance shouldn't have been billed since last week.  Oh, right.  Now it's going through.   Then I got to talk to the same pharmacist as before and she told me the insurance was still not letting it go through for more than a 6 day supply, so if Dr. C says we still need them after tomorrow, we will have to have her make a special request to the insurance to allow it.  ARG! Just a bunch of headaches I don't need!

Tomorrow we go back, so stay tuned for eye drop updates tomorrow.  We really need some good news.  

I'll have to update more often, so I don't have to make as long catch up posts lol!  Thanks for reading, if you made it all the way through.  

Getting Stronger!

More good news to report!

Cordelia got to come with us to Phoebe's PT appointment today.  She has been very eager to visit the "doctor playground."  I spent a lot of time prepping her and telling her that it was for the kids who needed to do their exercises and that she would need to take turns and ask before she used things.  Cordelia is pretty good at entertaining herself, but sometimes she can be very demanding of attention, so I wanted her to know going in that she had to behave herself or I wouldn't take her back.  Cordelia can be a little unpredictable with outings, but fortunately did great, though towards the end was wanting me to be more involved with her.

We met the other physical therapist Tiffany today and she was really fun!  Cordelia was in charge of introducing Phoebe and telling her about Phoebe's arthritis.  Cordelia recites: "Phoebe has arthritis, but not me.  I'm not sick.  First, she got it in her knee.  Then she got it in her other knee.  Then she got it in her arm.  Then she got it in her eyes and we have to give her eye drops.  Phoebe is an arthritis warrior."  Tiffany was impressed with her informativeness...  hopefully she is developing script/mental schema for understanding what is happening to her sister, and learning to advocate for her.

Phoebe was so excited to be back in the playroom!  Yay!  She immediately wanted to start to play.  One thing that I thought was really impressive was that after she sat on the swing, she got off and went across the room to a toy bin and came back with a plastic turtle.  At her first visit, she had played with a turtle on the swing.  She remembered!!  Cordelia waited patiently for a turn on the swing.

Having big sister there actually inspired Phoebe to be more adventurous (as I had been hoping would be the case!)  Cordelia went down the slide in the room.  Phoebe has never gone down a slide alone.  If she climbs to the top of a slide, she has never mastered sitting down, getting her legs in front of her, and pushing off to go down.  This slide also had a pretty straight ladder to the top, which required Phoebe to put all of her weight on one knee to move from rung to rung.  I mentioned that getting on a tall step stool in our bathroom at home is hard for Phoebe, because she has to lift her leg high and then put all her weight from leg to leg.  But today, Phoebe was eager to try!  I was amazed that she even wanted to try, and soon took a video because she wanted to do it again and again!  She got better and better each time!

The other new thing Phoebe tried was the trampoline!  Look at how much fun this is!

Phoebe asked for a BIG ball to be brought down from the net.  She got to roll it all the way down the hall.  

Anyway, Tiffany said she thought that Phoebe was doing "fantastic" and that we don't have to go back for PT again for 2 weeks also!  We have OT on Monday for her hand, so we'll still be there, but glad that both PT and OT can be bi weekly!

Keep getting stronger, my little bird!!  

A Better Day!

Ha ha, you are probably scared to come back and read on here, after my other traumatic struggles posts, but only positivity today!  As I've said before, it's a roller coaster ride!!

A big highlight was I got to have a mommy date with my friend Eryn, who has been following along with our arthritis journey and been sending so much encouragement.  Today, we met up and along with hugs and iced tea, she had so thoughtfully prepared a bunch of info about following an anti-inflammatory diet.  She printed me some articles, a ton of recipes (with cute notes added in the margins) and treated me to a whole sampling of healthy, gluten-free/dairy-free snack options as ideas to sub in.  Just look at all these goodies, and this wasn't even everything in the bag!

Yum yum!

Thanks Eryn, you are such a sweetheart!  I'm a happy mama!

Eryn's family deals with life-threatening nut allergies, so it was great to also bond with another person who also is familiar with a side of the whole medical world that most of us don't have to think about, except in passing, on a daily basis.  A year ago, we couldn't even imagine it, but now with her allergy therapy, her daughter is eating a peanut M&M a day.  It makes me hopeful for where we will be a year from now too!

Changing Phoebe's diet does sound daunting to me, but of course, I'm open to anything at this point.  The struggle is with her pickiness and then, with how she is feeling on any given day, it obviously affects her appetite.  Tonight, I made cauliflower for the first time, as Phoebe had picked it out while shopping.  I hated cauliflower growing up, so this was new for me!  I roasted it with salt and pepper and olive oil and some nice anti-inflammatory turmeric.  It turned out pretty delicious.  Cordelia was persuaded to try it and quickly announced "I LOVE it."  Phoebe put it in her mouth (impressive in itself), but then spat it out and refused to try it again.  ::eye roll::  Cordelia even tried to convince her to eat a bite, which was cute.

Phoebe has been congested the last couple weeks (getting better, at last!) so I have been giving her almond milk over cow's milk.  Though I do wish it had more protein, as it is hard to get Phoebe to eat chicken or even egg daily.  Eryn suggested a plant-based milk that has pea protein, which might be good... I'm definitely hesitant to do too much soy.  But anyway, the main thing is to just keep Phoebe eating things and making healthy choices for her so she gets enough nutrition.  She ate rice from our dinner, maybe 1 bite of chicken (I'm not sure if she actually ate it or not!) and turned down the cauliflower and asparagus.  After we ate, I gave her vanilla greek yogurt (to put her crushed up folic acid in) and grapes.  We just can't fight about food when she already has so much going on!  I'm excited to pack her lunch with some of her new yummy snacks!

Anyway, after my lovely midday break, I went and picked up the girls who were both having really strong days, temperament-wise.  Phoebe was having a very, very good day.  She was very happy and so energetic!!  When I came in she, she was also wearing a new adorable little Hawaiian dress from Papa, blue with white flowers.  She looked so pretty!  You can see her wearing it in this cute video I took later, where she tried to put her own rain boots on Cordelia's baby doll.  She thought of it all on her own!!  She then gives him adorable kisses.  Ha ha, so cuuuuuute.....Cordelia was never into babies very much at all, but Phoebe loves baby dolls.

Phoebe was laughing and playing and walking around confidently all evening.  Even when Jason got home he was impressed with her energy.  She did have two solid naps today, so hopefully we are getting over the day light savings hurdle.  I also hope that this is the methotrexate starting to kick in!  She did protest about her eye drops more than yesterday, but still is not getting too worked up.  If we have to keep doing this even after next Friday, I think at least we are setting into a good rhythm for it.

Phoebe is getting more into books.  We read a book called "Eli, No." where a dog named Eli gets into all kinds of mischief, like eating too much or peeing where he shouldn't and on every page it says "Eli, no!".  Phoebe read it for the first time yesterday and immediately pointed at it and started saying "No."  Then she joined in saying "No!" on each part of the story.  She LOVED it and it was so hilarious.  I'm impressed that she picked up the premise of the book so quickly, after just one reading, and remembered it from the previous day!  Yay Phoebe!  We read the book many times tonight!

Tomorrow morning is PT!  We're taking Cordelia with us, hopefully it will be fun for both of them!

Brave and Sad

Moving on from yesterday.

Thank you Kaitlin for the kind comment left on the blog about how you can be sad and brave and strong.  It reminded me of this, which was going around Facebook just last week.  I love Little Critter, but I appreciate the point it's making about accepting emotions.  I'm not really upset to have cried in front of my children.  They've seen me tear up before, I can be a bit of a puddler and even cry when I'm happy.  But I think there is a line where you have to be careful not wanting to look like you're falling apart because that will be scarier for them. I felt I was able to go to that zone when our cat Willow died last year, and I was strong so that I could guide Cordelia for her first close experience with death.  So I guess that was the hardest part---that I'm scared of how scary this is for them.  

I also heard from a few more of you.  Thanks for sending the love, hugs, and support our way! Thanks for going on this blog-journey with me, highs and lows.   

I think we've decided that moving forward Jason is going to do shots and I'm going to hold Phoebe.  While we get used to this.  I still want to participate in the shots, but she kind of want to be held by me anyway, so maybe it will be slightly more comforting.

* * * * * *

I made an abbreviated post on Facebook about my struggles last night and got quite a response.  Here were some suggestions/responses.  It's a bit long, but I think I'll just share it all.  

"This is hard stuff! Try to give yourself some grace. My paramedic husband can handle horrific accidents and save lives but he has a hard time sticking our daughter. She’s 11 now and we still cry about it. Hang in there! You’re not alone."

"This sounds so much like my first time giving my son an injection at home. It had gone so well at the hospital when I was learning so I felt okay going into it. It was HORRIBLE. His little leg looked like a pin cushion and I poked myself too as he wasthrashing. It was one of my most horrible days as a mother and I still feel sick when I think about it. BUT, he forgave me and I forgave me and I had to remind myself: I’m not a nurse. I didn’t go to school to give shots. They make it look so easy but they’ve done it hundreds of times. I had to learn on my OWN BABY. Since then, it has gotten so much better. I stop before I stick and take two deep breaths, then in like a dart. I’ve learned a little bit each week and have committed to making myself the best dang shot giver because his body needs it. Hang in there!  PS- I still cry sometimes."

"My best advice is don't hide it from her. She may be only 19 months but she understands. Involve her in every step as much as possible. Let her get the needle or alcohol prep, clean the site, get the vial out, ect. Give her a task and stress it's importance. We started all this with my LO when she was 18 months and we tried to involve her in everything and explain everything as we are doing it. From the beginning she never batted an eye at any of it and it has never been a battle to get blood drawn, give medicine, sit for exams, or anything. She is now 4 and the lab people comment that she does better at her draws then their adults. It is hard mama, but you will get more confident at it."

"We're years in to shots for both of my girls. I'm still a mess afterwards. Every time. When they were only doing mtx injections I would wait till they were in a deep sleep and inject. It stopped working when they started humira, but they never woke once for mtx. Maybe you could give that a try? Getting the needle in can also be a bit easier if you make sure they are SUPER hydrated. Most importantly, remember that she will forgive you. You're brand new at this, and it will get easier. Hugs mama"

"The first or second time I s it, I dragged the Humira needle across my toddler’s skin. Yeah, super mom. I know. It gets easier. Our guy is four, will be 5 this summer. We started when he was just after 3. We do biweekly Humira & weekly MTX when we’re healthy. Even though it’ll be two years since we started in August, it still takes two people. One to hold and one to inject. I’m the injector. I’m the holder at the Dr’s office for blood draws and vaccines- but not at home. My hubby had to learn to hold. Because he’d never done that duty before. I have my MIL and my Mom who are both RNs that can help when my husband isn’t around. I know some people that do the pokes at a doctors’ office.  You gain your footing. When you see how it helps, it helps too. Mama, you got this. You have to go into it with confidence."

"I have not started my son's shots yet. But I have done shots on animals for 4H and our horses. If the needle is left over after the shot (I assume so), practice on an orange. It is amazingly very similar to people. Then when you try it again you will be more comfortable. And I am sorry a baby so small has JIA. Hugs to you."

"I once stuck the needle in and went to push in the meds, but ended up pulling out the needle instead, so i had to stick her again. 😞 We are not certified nurses. We will make mistakes but we will keep on nursing our kiddos as needed, because we love them."

"We started shots when my daughter was 2.5. We’ve been doing shots for almost a year now, and while occasionally we have a time where she doesn’t do well for the most part she doesn’t mind the shot much at all. We were doing the back and forth for a long time so neither of us would be the bad guy too, but the truth is that my husband was just not good at giving the shots, which added stress for all of us including my daughter. We ultimately decided to have him mix and prep her shots, and I give them to her. My daughter gets to choose a tv show to watch, which helps to distract her. She also likes to participate in the prep like wiping off her arm with the alcohol pad and will occasionally even want to push the medicine in. For my daughter, giving her as much control of the process as we can allow makes it more manageable for her. I know that it is SO hard right now, but I promise that it gets easier. ❤️"

"Hugs to you ❤️. I know exactly how you feel. My husband had to do both of our kids injections because I just couldn’t do it. I tried to once and both kids said that I hurt them more then it should have. Our little girl has failed on injections and now has moved to infusions, but our son still gets his meds through injection. My role for him is to hold his hand ❤️""

"I practiced on an orange and just couldn’t do it for our own daughter. My husband has always been the one to give injections- both Enbrel and methotrexate. I would have my daughter on my lap, with a stuffed animal or blanket and then my phone for a game/noise/distraction. We’d talk about that the medicine helps her to feel better, to make sure both our kids heard about it and that we’re a team helping each other, so that she didn’t think daddy was the “bad guy” doing the injection. Now she’s 7 and she grabs my phone and plops down without me and my husband does it. 
At the ja conference we heard advice about paying attention to the child not getting a shot. As hard as it is to do when you’re so occupied getting the shot into one, pay attention to the reaction of your other child. If possible, make sure you talk through what’s happening and why to both kids. We were so worried about one kid, we didn’t realize the other would huddle in the corner every time we did sisters shot."

"feels very familiar. All the emotions are things I’ve experienced too. I’m sorry anyone has to deal with this" 😞"

"nclude her in the preparation let her hold the band aid and the guaze let her blow the area you wiped with alcohol wipe ..sing a song she loves do anything you can think of to include her of helping.. my daughter is 22mos she's been doing great every since we started this. Good luck mom"

"I had similar Saturday night. I think I bent the tip of needle during draw. Took two pokes and second went in tough. "

"This made me cry, hugs to you. I know how hard it is. Hang in there! ❤

Manag

"I have never done the shot lovely, husband does it every time and it’s been almost a year now. I hold her down with all my strength and he does it and she’s used to that, she sees me more of the bad guy restraining her to be honest! Some people recommend trying it while they sleep as they just flinch and go back to sleep....might be worth a go? Xx"

"We just got our diagnosis a month ago. I take her in every Monday because I can't stand to give my 14 month old an injection. I have no problem drawing it up but can't get myself to go the next step even though it would save me a ton of time."

* * * * * *

Wow. Thanks Internet Support Group!!  If your child is ever facing some sort of Diagnosis, Internet Moms (and Dads) are there for you!  Get connected to your tribe.  

I think the most useful suggestions were to practice on an orange and involve Phoebe more in the process.  I do not really like the idea of injecting her in her sleep.  I think she would wake up, and even if she didn't, it still seems like some sort of gray-area of consent in the future.   It may work for some people, but I don't think it's for me.  But letting her help wash her leg with the alcohol wipe and hold the band aid sounds much more up my parenting-style alley.  :)  I can at least try it, though I'm pretty sure she will still cry!!

But maybe things will get better.  Phoebe was having a pretty amazing day.  I kid you not, she was taking her eye drops WITHOUT FIGHTING OR CRYING today.  HERO BABY!!!

We did go to see Dr. B this afternoon.  Another thing I have great appreciation for is her availability and willingness to see me.  One thing in the Facebook group that I was seeing was people struggling to get appointments.  Like in Arkansas, there are only 2 pediatric rheumatologists in the whole state and people were suggesting driving to another state.  I told Dr. B how much grateful I was that she offered to examine Phoebe's hand herself.  She told me that there are 9 states that have NO pediatric rheumatologists at all.  She also apologized for being late, she was running behind.  But I had no complaints as I know she totally squeezed us in and is a very, very busy doctor.

To be honest, I kind of expect this to be a more in and out check in, like when you go to the pediatrician, but Dr. B was very thorough and went over examining all of Phoebe and wanting to know all the details about how she is doing on the meds and with PT/OT starting.  She bent and twisted Phoebe's limbs to see if the injections she had done were working, and seemed pleased!  

Phoebe's cyst on her hand is from synovial fluid.  She couldn't really say if massaging her hand had maybe displaced some fluid, but it seemed a little unlikely.  She also noted that the cyst is very near her wrist, so she could have some arthritis building up in her wrist, or in her hands around the tendons there are also lots of little bones.  Hard to say.  But, she agreed with the On Call doctor--- leave it alone.  This isn't something to soak or ice or drain away, we have to control the inflammation.

In her email, she said she would maybe consider doing a course of oral steroids for Phoebe, which was worrisome since she had previously been telling me not to do too much steroids.  But after seeing her and that she still had use of her hand (although she does not want it touched!), she didn't want to do more steroids.  Phew!  If she needed them, we would do it, but it is a relief to not have to add one more med.

We go back in two more weeks and then Phoebe will also have lab work done.  We'll then try and stick through til May and if Phoebe is not improving on mtx by then, we may move on to a biologic sooner rather than later.  In the mean time, I really hope she does not get any more cysts!!