Tough day

While most days I can manage to get through without seriously contemplating the kids' medical issues, for whatever reason, the drive to and from the hospital is where I really feel the stress of the situation. Even now with Em having a port, it is easier but once we're there and ready for them to access she really panics. Just thinking about the fact that they need to access my child is freaky, isn't it? I guess it's because going makes it all more real. Funny, really, since I'm with her when she's miserable or can't walk too, but that isn't as real as hanging at the hospital. Even now I have days where I mourn for my sweet tiny little bean pole that isn't anymore, thanks to steroids.  It seems awfully unfair sometimes, but we move on.

This trip started with the Pulminary Function Test. Now that it doesn't scare her, she actually enjoys it. I thinks she's a little crazy but hey, at least she does it without trauma. She did very well doing the test, & while the doctor hadn't seen the final report, he said the preliminary report looked great. The tech scared me a bit; he asked me with a concerned tone in his voice if we were seeing her doctor that day.  It was the way he said it that made me think, "uh-oh", but it really does seem to be ok.

Later, things were okay in the infusion room after she was hooked up. She screamed bloody murder first, but she calmed down soon after the needle went in. I guess she will always have major anxiety. I really had hoped that it would get better, but it just doesn't.  She screams like they're trying to kill her- flailing her arms and all- until the needle is in; then she relaxes.  She got her Orencia first, soon followed by her Rituxan. That is a huge relief since Rituxan is what helps her the most. I finally got to speak with someone about scheduling the swallow study. Naturally when they called me back, Em was screaming and I missed the call, but I managed to get them while still in the infusion room. They wanted to schedule the study for the 17th, when we already have appointments up that way on the 21st & the 27th.  If they weren't 2.5 hours away that would be fine. She hung up & called me back to tell me that they could do the swallow study while she is inpatient, but it needed a different referral than the outpatient one. That led to another round of calls because the check-in desk at the hospital doesn't document the way that the other staff does, so I actually had to call the doctor's office even though she sees them there. The funny thing is that not long after the person I left a message for found us in the infusion room. She said she'd find out & let me know what was up. That's the last time I spoke with her. That's cool- as long as it gets to the doctors I don't care. Long story short, they scheduled it for Thursday. That would have worked much better if pharmacy had sent her pre-meds up a few hours earlier. Instead of starting her IViG around 6, it was started at ten.

The plan was to finish the IViG as inpatient, then move to the infusion room for Remicade, while hopefully squeezing in the upper GI somewhere. Eventually they got her scheduled for her testing at two. They also ordered an x-ray for her arm because for once, Ms. Careful fell out of bed onto her arm! I really thought that she broke it. She never gets this upset!  And yes, I was pretty ticked off about that.  She fell while leaning out of her bed to pick something up off of the floor.  I had just told her that if she needed anything to let me know, and the nurse had just walked out of the room.  She'll make sure to ask next time, I'm sure. 

So they tell me that the plan was upper GI & x-rays at two, then Remicade. I pointed out that this would allow her 2 hours for a five hour infusion. (4 for Remicade, one for Solumedrol.). That is how we dropped Remicade & decided to go back to Enbrel. Yeah. Personally, I think it's a better move. I don't think Remicade has been as good for her as Enbrel was so I'm good with that. And we had talked about dropping it after if the Orencia worked for her, but we still have another month or two before it would be considered fully in effect.  That's why the Enbrel is back- probably.  He wants us to wait to see if she will really need it.  Again, I'm good with that.  Enbrel seemed to do more for her before anyway, but also this will allow us to go back to simple 5 hour infusions on the months that she doesn't need Rituxan.  That is awesome because staying overnight isn't really too much fun for anyone.  Benlysta was also thrown at me as a replacement for Rituxan.  I have read up quite a bit, and while I still have a lot more research to do, I think that we will stay with Rituxan.  Rituxan is an awesome medicine for her.  She feels it wearing off about a week before it is due, which is why they discussed switching.  From what I've read, people that do extremely well on Rituxan don't seem to do nearly as well on Benlysta.  It's like a downgrade.  Why go backwards? 

And then there was the upper GI.  She totally freaked out for it. She wanted x-rays of the arm so she was perfect for that but she was scared to death for the rest. The doctor wanted to reschedule but I begged them to do the test.  She just got herself so wound up.  I knew that if we put it off this would only happen again, but probably worse.  I know how she is, and she would be thinking about it every day for the next month until it happened, and then she would have had more time to make it worse in her head.  It needed to happen today for that, because she's been having a hard time eating lately, and because I feel that she's starting a Dermatomyositis flare.  I've seen the red dots reappear, I know she's had some muscle aches lately.  Knowing that she had the "air-filled esophagus" on the chest CT at least helped me to prepare for this.

So, I don't have any official results yet, but what I can tell you is that there is something going on. For those that haven't done this before, all that she had to do is swallow strawberry flavored barium while under a big camera.  The camera is like a video camera; they can watch the barium flow through her esophagus and into her stomach.  The problem is that it really didn't.  Yes, some flowed down, but quite a bit didn't.  And some of what did go down passed out of her stomach, but much of that stayed, too.  They called in an additional doctor to ask what to do.  In the end, we waited about ten minutes and they took one last picture of the barium that was still in her esophagus and stomach.  Is it from JDM, MCTD, possibly Scleroderma or from something different?  Not a clue.  I hope to find that out soon, along with what to do about it.  I'm just so glad that we did the test today.  I just knew that something was wrong.  I really hope that we don't have to go back up on her steroids.  That would really kill us.

We were told that we could go home right after, but we waited around to make sure that the x-rays didn't show a break.  I asked them to give her some pain meds, so they gave me a prescription.  Since they wrote for something that my CVS doesn't usually have, I filled it there.  They told me 30 minutes.  No worries.  After 45 minutes of waiting, I asked them if there was a problem.  They didn't have the correct insurance info right there.  So, instead of calling the cell phone number that I wrote on the scrip, they figured they would just wait until I wandered over there, then they told me it would be another ten minutes.  I was so mad!  I didn't say anything but I was fuming.  We ended up getting our meds as we were leaving, with me pushing her chair and carrying a suitcase, with 2 pillows and a bunch of our bags hanging from the chair.  (Laptop, sleeping bag, blankets, etc...)  I was not happy.  But we're home.  I am so glad that we're home.  Hopefully we will find out more soon.  I will keep everyone posted.  Prayers would be wonderful, please.  Especially for her throat issues and for no flare to hit.  Thank you to anyone that prays for us.  I am off to dreamland now.  I will leave you with the words to a Natalie Grant song that Emily loves off of Natalie's "Relentless" album.  The part that I have in bold I just can't even sing.  It tears me up every time.

"Our Hope Endures"

You would think only so much can go wrong
Calamity only strikes once
And you assume this one has suffered her share
Life will be kinder from here
Oh, but sometimes the sun stays hidden for years
Sometimes the sky rains night after night
When will it clear?

But our Hope endures the worst of conditions
It's more than our optimism
Let the earth quake
Our Hope is unchanged

How do we comprehend peace within pain?
Or joy at a good man's wake?
Walk a mile with the woman whose body is torn
With illness but she marches on
Oh, 'cause sometimes the sun stays hidden for years
Sometimes the sky rains night after night
When will it clear?

But our Hope endures the worst of conditions
It's more than our optimism
Let the earth quake
Our Hope is unchanged

Emmanuel, God is with us
El Shaddai, all sufficient
We never walk alone
And this is our hope

But our Hope endures the worst of conditions
It's more than our optimism
Let the earth quake
Our Hope is unchanged

Now what? (Cuz' I have NO idea....)

So, to recap for anyone that hasn't kept up with us, in September Emily had the port placed.  In October and November she was inpatient for staph in the port for three weeks.  She was home for about a week when she got the sinus infection.  After trying all of the normal antibiotics, after having her sinuses scraped, then re-suctioned two weeks later, another 31 days on Augmentin, it's back.  We went to our pediatrician on Monday.  She ordered Zithromax, despite my protests.  Our infectious disease doctor at Shands had said that Zithromax doesn't really help sinus infections and it's a waste to try.  So, I had called them to see what else we could do.  They called in a prescription for Ceftin (Cefuroxime) for her.  She had her first dose Monday night.  She was fine that night and Tuesday.  Yesterday I was called to come pick her up from school.  Her stomach was killing her.  So, because I am a pharmacy by now, I had some Zofran to give her.  About a half hour later she vomited.  So, I ran and got the Zithromax anyway.

When I spoke to the ID docs, they had said that really if the Ceftin didn't work then we'd probably have to have a new culture.  That would mean dealing with the ENT's again, but ours doesn't really seem to understand the whole immune suppression thing.  They were under the impression that ten days of antibiotics would be enough and they wouldn't believe the infection was still there until they cultured it again.  So I'm not too thrilled about the idea of talking to them, but ID had really only gotten into this mess because they work so closely with our rheumies.  So what to do?  We have another appointment with our pedi today, but I'm not really expecting much.  Maybe if I just tell people "Ok, her Remicade  wipes out her T-cells AND her Rituxan wipes out her B-cells", maybe they'll understand better?  This is why I really need to become a doctor.  Soooo frustrating! 

In the meantime, we've been tapering her Prednisone down.  Her doctor wanted her down to 3mgs last month, but because her thighs kept hurting we didn't want to jump into it.  We just spaced it out more and tried to "trick" her body into accepting it by doing 3mgs for two days then back up to 3.25 mgs for two days.  We did that for about two weeks.  She seems to be accepting it well.  Her thighs and knees have been stiff and tired, telling me that nothing is under control yet, her ankle has been hurting and she's having back issues.  I think the back issues are from the steroid taper.  Our PT explained that since she went from no curve in her back to too much curve from the steroid belly, her back would be affected when the weight started to drop off.  Even getting better hurts with these damn diseases!!!  Then again, she also doesn't think her Remicade is working.  I hate to mention that to the doctors because we are running out of options.  I believe that our only other option would be Actemra, but knowing so many other kids that were on that and failed it, I don't really consider that a serious option. 

The bright light in all of this is that I told my husband the other night that I WILL be homeschooling them next year.  We will find a way to make it work.  She has missed 57 days of school this school year, mostly due to her infections and hospitalizations.  Because of my work schedule, she knew that she had to go to school unless she was contagious or really just couldn't make it.  She knew that she could call me out of work, but I had to at least try to go to work.  She would have missed a LOT more if I didn't have to work.  So, we're going to sacrifice.  If I can work ten hour days on Saturday and Sunday then we can make it, and they'll be home with me.  Zachary has been begging me to homeschool him for the whole year!  He's doing well, but he is definitely getting sick more often since starting Enbrel.  He's had some headaches but that's about it.

Please, let me know what the heck you would do on the doctor situation!!!  I am lost for once!  Thank you! 

Our new plan!

Ok, so again I am completely exhausted.  Forgive me if this doesn't make any sense, but I want to get it out before I forget it all.  We had another crazy day.  Hospital time runs at a totally different speed than real time.  It really seemed like I woke up, blinked, and the day was gone.  I didn't even get time to just chill out on Facebook.  Emily got quite a bit done.  She was up early, got some TV time in, went to the playroom for a while, found a book to read that she enjoyed, played some video games, made some creations and watched a couple of movies.

I started my day by running 2 toys that were given to us to take to the infusion room.  I figured that while I was there I would get a copy of her labs.  I figured that they may be off a little, but I didn't expect them to be completely out of whack.  I was shocked at how many exclamation points there were.  (They indicate levels out of range.)  Her inflammatory markers are elevated, but with an infection that is to be expected.  Her urine was all messed up, but they said that looked more like a contaminated sample.  (Phew!)  Her liver enzymes (used to measure her muscle activity) look fantastic!  Those running amok is one of my biggest fears.  Almost everything else was off, though.  That worried me, of course.  I patiently waited for a few hours to see a doctor.  Praise the Lord, we have been through enough of this to not worry just because something looks like it may be a problem.  Problems usually seem to not be so glaringly obvious with us.

Towards the end of the day one of the doctors came in.  Before I go further, let me say that one thing that I love about our rheumy group is that they don't just treat what looks rheumatological and hope someone else will deal with the "other stuff".  Dr. E asked the Infectious Disease doctor to come talk to us.  Let me tell you- I was soooo excited to see her.  Dr. E had told Dr. V that she had ordered the Rocephin antibiotic because it's very good for sinus infections.  We explained once again how the past few months have gone, listing each antibiotic and the amount of time prescribed.  We established that I need to be more firm with these other doctors when it comes to prescribing antibiotics for an actual infection.  I admit, that's not something that I'm good at.  I feel that, while I do probably know more about rheumatology than they do, it's not my place to tell them how to do their jobs, and while I should have a medical degree, I don't actually.  We talked about that for a while.  She said that she would never prescribe less than a 21 day course of antibiotics for anyone for a sinus infection- never mind an immune suppressed child!    I will now be more firm on that. 

Despite me asking the ENT's to send over her file, despite me signing paperwork on Monday for them to do just that, they haven't done it yet.  Dr. E had her nurse practitioner working on it, too.  That said, they could only rely on what I was told by the ENT's from the first culture, which was that it was weak to Augmentin.  Knowing that Augmentin was the only antibiotic that seemed to do anything (except for a few days before her scraping when it seemed to stop working) they prescribed a 21 day course.  They also want us to keep doing IViG monthly to boost her immune system back up and then maintain it.  Yesterday's labwork showed her Igg at 435.  They usually do IViG for levels that fall below 500.  I feel a huge sense of relief with this. 

As I said in yesterday's post, we will wait two weeks to resume her Methotrexate, and then it will be at a lowered dose to begin with.  She's one of the few kids that loves her Methotrexate because it helps her to not be so itchy.  Dermatomyositis can cause severe itchiness, and even though hers is much better now than it was since her muscles aren't flaring, it's still annoying.  I'm more excited about the Prednisone decrease!!!  Again, a drop from 4.5mgs (1.5mls)  to 3mgs (1ml) is huge!!!  She'll have two weeks on 1.25mls, but that's ok.  It's been so long since she's had a decrease.  I realize that the slower the decrease the less chance of flaring so I wasn't complaining, but perhaps on the new dose she'll be able to lose some more water weight.  She is still so self-conscious.  And that should help her growth to get back to a more normal rate.

Last but not least, we had a roommate this time.  Bless her heart, the girl has Crohn's Disease.  She was given the option between trying Remicade via IV or trying a feeding tube at night with formula that would help to heal her colon.  She really thought that the tube would be a good idea.  That poor girl cried and cried, begging her mom to take it out.  Before we left she decided that she would try Remicade- despite having a huge fear of needles.  We were able to help them feel more confident about their decision, and give them some idea on what to expect.  God puts people where they need to be.  I truly think that we may have helped them a bit tonight.  I hope so!!!  I am hoping that Emily feels much better in the morning, too!

*Written at 12:04 A.M.*

Illness Update

While I told Emily Monday night that there was absolutely no way that I could stay home Tuesday, she was so miserable Tuesday morning that I caved.  Yes, I'm very worried about keeping my job, but what can I do?  She is so sick.  She functions so well, but no doubt she is still very sick.  For a girl whose temp is normally about 97F, today she was 101F in the doctor's office- and that's after being on Omnicef since Sunday.  According to my bean, it hasn't helped at all.

The weird thing is that she was fine until Saturday.  I know I wrote this in my update on Sunday, but she had a 10 day antibiotics course that ended on December 7.  I believed that this was her sinus infection coming back because she had her Remicade (immune suppressing infusion) on December 5th.  So, it's a good thing that I listened to the doctor and made an appointment for bright and early today.

Our pediatrician believes that she may have multiple infections causing this.  She added Clindamycin in addition to the Omnicef, and she ordered a sinus CT.  Our health insurance apparently needs a prior authorization before we can have it done (because a doctor's order just isn't good enough these days!), so we had no sooner time slot than Saturday.  Hopefully it will be read before Monday.  I already had an appointment for Gir made for that day; I just added Emily on to that one.  We have been at our pediatrician more in the past three weeks than I can remember at this point.

I'm still working on getting my FMLA leave to go through.  Apparently our doctor's didn't fax in Emily's stuff.  I haven't been able to get a hold of them to find out if they didn't get my fax, if it was thrown aside and forgotten, or if perhaps it needs to go to some other department.  I have no idea.  I really need to get that done.     Much as I would love to be a stay-home mom, it doesn't really fit in the budget.  Oh, how lovely it would be to not have to worry how to get a bazillion appointments done around work, how nice it would be to not have to feel guilty every time I went to work when one of the kids needed to stay home, or to not have to feel guilty for calling into work when they are very sick.  Many days it seems that, no matter what I do, by doing the "right" thing for one person, I'm ticking off somebody else.  Thank God our school understands with Emily.  I so love them.  <3

It's a little more delicate with Zach right now.  For one thing, anyone that doesn't know him likely worries that he is contagious when they see him.  He is truly a mess.  There is nothing that we can do except wait for the Enbrel and hope for the best.  Well, that's not 100% true.  I could slather him with Aquaphor all over, but he really, really hates that.  It's greasy, he sticks to everything and he's uncomfortable.  That's been the only thing that we find that works, and he begs us to not do it.  We figure, if he hates it enough that he would rather walk around feeling miserable, it must be pretty bad.  We have found a few things that help for his head.  Clobex works the best, but it's a prescription and our insurance doesn't cover it.  We would have to fail everything else first, then pay $325 per bottle for it.  No thanks.  Or there's Paul Mitchell Tea Tree Special Shampoo.  It doesn't really stop the progression of the disease, but it does help remove some of the scales.  We use a nail brush, like a mechanic would use on their hands to get the grease off.

Well, anyway, back to the school issues.  I don't have an IEP or 504 Plan for him yet, so we have to be careful of his time missed.  That would be easier if I could remember to get notes from the doctor's for him.  Today we have to take him back for his TB test results, and then we will hopefully be able to start his Enbrel.  I am currently going through an insurance nightmare with this, but I hope to get everything settled soon.  (Good thing I've been stuck home the past few days!)  I cannot wait to get his Enbrel started!!! 

Let me also say that, before Zachary developed psoriasis, I had no idea how bad it was.  I didn't understand it at all.  Psoriasis is also an autoimmune disease.  (Again, autoimmune is where the body attacks itself.) Psoriasis is it's own disease, but it can turn into Psoriatic Arthritis, which is what has happened to my son.  Psoriasis itself can really take over.  He went from having just a small patch on his ear to having his ear covered pretty quickly.  Now, years later, we marvel at how it has taken over.  It's popping up on his joints now, too.  I notice little ones trying to start all over his jaw.  It's in the folds of the knees and elbows, and the bony parts, too.  It is in his eyebrows, but it has also formed in the past on his eyelids.  He has one trying to start in the lower fold of the eye.  It itches, it burns, it doesn't feel good, and people stare.  It lowers one's self esteem.  My poor little man has been so embarrassed because of it.  Hopefully once we start the Enbrel, we will regain control of his skin issues and also head off anymore joint involvement.  I see where it's going and it scares me.  I also know that having finger involvement means that he'll likely be polyarticular (5 or more joints involved).  I'm really praying that the Enbrel is as much of a miracle for him as it was for Emily.  Yeah, what we go through is pretty crazy, but by the grace of God we get through.  As long as we have Jesus on our side, we will continue to get through with a positive attitude, knowing that He is there to lean on when we grow weary and we will be cared for.  That's enough for me.

A birthday & a new diagnosis...

It's time to change the title of the blog again!  My 9 year old is now an old ten year old lady!  I can't believe it's been ten years.  I feel blessed every day to have these kids.  Today was a good day.  She was very tired from her meds yesterday, so she stayed home today.  I ran her brother to school, ran to the grocery store to pick up her cake, ran back home, and then had to run back out to take my oldest to the doctor.  After a trip to CVS for more meds, we were back home.  She had kept telling me over the past month "I can't wait to go to therapy on my birthday!  Miss L.A. will have to wish me happy birthday!"  She was too tired to go today.  She requested pizza for dinner, so I ran back out for pizza.  We all had a nice night laughing, having a hug war, and just enjoying each other.  I also noticed tonight that her pants are falling down.  Why is this significant?  She is definitely losing a LOT of Pred pounds lately.  She's lost about 10 steroid pounds in the past couple of months.  The only way that we can tell is by looking at how her clothes hang on her.  Shirts that we bought last November that she was popping out of by the end of that month are now looking more like dresses.  I know that it's not going as quickly as she'd like, but there is true progress.

So, we had appointments yesterday.  She has done pretty well without an NSAID over the past two months.  She has had some days with a back ache, or knee pain, or a bad elbow day, but overall she's done very well.  Well enough that she didn't want to try another NSAID.  Works for me  :)  However, she did notice that she has 2 new bumps- one on each hand.  She told me that they were rheumatoid nodules. (There's a switch!  LOL!)  We remembered to ask the doctor yesterday and he confirmed it.  All of us are pretty surprised.  She hasn't had any nodules since she started Enbrel in late 2008.  They seemed to only pop up when her JA was active, and right now it's actually been pretty quiet.  Well, maybe not as quiet as we thought.  Where the past few months have showed low inflammatory markers, yesterday showed that her SED Rate  is creeping up.  The ranges for kids vary, but the range our hospital uses shows the normal range ends at 20.  Her SED was 22 yesterday.  No, not significant, not the 39 that it was last October when she was diagnosed with JDM, or the 79 that it was at one point last year, but significant enough that we'll need to keep a close eye out for more symptoms.  I really don't want to take her off of Remicade.  I don't want to have to make another change.  This combo seemed to be working so well!  I'm not going to panic.  We'll just watch for now.  He felt that her ankle was warm, and her Raynaud's is getting a little worse again, but otherwise she is doing well.

And then there's my son.  People that know me well will tell you that I have little patience for drama.  I try to be as realistic as possible.  I hope and pray for the best, but I expect the worst in a realistic fashion.  I have excellent intuition.  There are many things that I know, though I couldn't explain how or why & it probably wouldn't make sense, anyway.  I just know.  I have always known that the idea of my oldest having arthritis is preposterous.  It would make as much sense to worry about her having arthritis as it would worrying about my little people running away to join the circus.  But my son.... I've been waiting for it.  I've held my breath hoping that I would be wrong, maybe just paranoid because pretty much every ounce of my spare time has some sort of arthritis involvement.  But I knew that one day he would be diagnosed.  Yesterday was that day. 

A little background.  Em was diagnosed with JA in January 2008.  By May 2008 Zachary had developed psoriasis.  Of course, "kids don't get psoriasis" was what our first dermatologist claimed, even after we had him scratch tested for allergies and the allergist wrote a note saying it had to be psoriasis.  This guy claimed it was impetego, a fungal infection, ringworm, eczema, a yeast infection... everything but psoriasis.  We switched dermatologists after we did some reading up, and realized that it was psoriasis.  He had a classic case.  It started by taking over his ear, then it moved to his head, forehead, cheeks, chin, and eyelids and eventually everywhere.  We have never been able to gain any control over it.  Not really, anyway.  He did have a short period of time that he was mostly clear, but then it came back with a vengeance.  I'm not good at guesstimating, but if I had to, I'd say he has about 70% coverage right now.  It's bad.  It's not comfortable.  It's very visible.  It's very out of control.  Aside from the vat of oily, greasy Aquaphor, nothing helps.  So, I read.  I look for things.  I know what to look for.  From the MCTD, Emily has what they call "sclerodactyl" hands.  I have read that people with PsA get the "dactyl" hands.  Well, I took a shot in the dark and figured out that the two were probably pretty close.  I figured that Em's was different mainly because of mild scleroderma features, which is what makes her fingers look tight and shiny.  Take away the scleroderma part of that and... well, you know where I'm going with this.  Of course, right now hers still look like overstuffed grapes that are going to explode any second, but that's also from the steroid swelling.  Take that away, and I knew that his hands look dactyl.  That bothered me.  I've watched his nails turn yellow, pit, look horrible.  Those are signs of PsA.  He's had heel pain- a sign of Spondylitis, the type of arthritis most often associated with PsA.  I begged his pedi's to test him back in 2009.  Everything was negative, but I was sure it was wrong.  I was totally going to enjoy him not having any pain, but I knew that it was just a matter of time.  So, this past August when he came to tell me that his jaw hurt and was clicking, my heart stopped.  Again, I just knew.  I hoped I was wrong.  I hoped it was TMJ.  But I knew it wasn't.  Of course, Kevin was still unemployed then, so when our dentist wanted $100 for a panoramic x-ray, I wasn't thrilled.  I also knew that arthritis would likely not be picked up on a panoramic.  Generally they run MRI's.  I knew that I had to get him in to our rheumy's.  I took advantage of one of our docs volunteering at our JA Family camp.  I asked her to look at him.  She agreed that he needed to be seen.  I then set about trying to get our pedi's to run those same labs I asked for in 2009, but with an ANA and an HLA (spondy) series thrown in with a CRP & ESR/ SED rate.  Thankfully, they love us and they know that we are not trying to scam or hallucinate problems.  While not being seen as early as I wanted him to be since Emily was stuck inpatient while he was supposed to have his appointment, I finally got Zachary in yesterday.

We saw the new doctor.  He isn't really new to me; we saw him more the time that Emily was inpatient than anyone else.  We really grew to like him and his wife that week.  He was originally thinking about ordering the MRI for his jaw, but he can feel the arthritis in there.  He also said that it would be very unusual for him to NOT have something more with as much psoriasis coverage as he has.  He was intrigued by his fingers, too.  He saw the dactyl look of them right away, and noted that they are all tight.  I'm not nearly as fazed as I probably should be.  Maybe I'm just in shock, but I think it's really because I was that certain that he would one day be diagnosed.  I've had so many reasons that I've just tucked away up in a corner of my brain, waiting for more puzzle pieces to fall into place.  If anything, I'm relieved.  No, I certainly don't want him to have arthritis, but I do understand that these things are much easier to control the earlier you start trying.  I have seen kids that took so long to get diagnosed that they can't get under good disease control.  I wasn't about to let that happen.  And that is why I'm relieved.  We're just waiting on our Enbrel prescription to work its way through our insurance.  I've already picked up his Methotrexate.  He'll have his first dose on Friday night.  We're starting him easy- he'll be on the pills, mostly only because Enbrel works better with MTX.  Hopefully this will be what he needs to help his jaw and calm his skin down.  It's so bad that, when he gets up from my desk after using my computer for a while, there's dead skin all over my chair, desk and keyboard.  How can that be comfortable???   So, we keep breathing.  One day at a time...

Rituxan #2

I am really putting my faith into this medicine!  After hearing so many good things about it, I assumed it would be a good choice, but now I think we see some payoff.  Emily told me on the way up to the hospital that she was able to walk up & down the stairs at school.  She credits the Rituxan!  She also says she feels it right away.  I pointed out that maybe it was the steroid she was feeling, but she swears she knows the difference.  I believe her.  It was a nice trip up considering how early we had to be there, and she was in rare form while waiting for a nurse to come poke her.  When they actually came towards her with the supply tray however, she freaked!  She was very extreme yesterday.  She cried, screamed, hollered, & yelled for about ten to twenty minutes.  Two pokes was all, but they started in a hand that still had a bruise.  She didn't point this out to the nurse, though....  After that she was good.  We got there at 7:30 A.M., and we didn't leave until 5:30 P.M. or so, but it wasn't a bad day.  Three of our arthritis families were there.  :)  It was so nice to hang out and chat for a while!  I was exhausted enough in the morning to nap.  Em couldn't, try as she might.  She slept most of the way home, though.

I was able to talk to the nurse practitioner about the blood in her stool.  I showed them pictures, too.  (It's a sad day when you're taking pictures of your child's poop!)  They decided to increase her Prilosec to two times a day to help protect her tummy better.  Of course, it was the night of my mom's surgery that Emily told me about it.  I really wished that I could just shrink back & ignore everything, but I guess that's not meant to be.   We were at the hospital long enough for her to get comfortable enough to open her mind up enough to talk about the port.  She had one of the nurses giving her a "Port 101" tutorial.  She isn't as nervous about getting a port now since we've talked to so many people.  My mom didn't even notice that they had given her one.  Mom's is in her neck.  She says it doesn't hurt at all, and they only put hers in on Wednesday.   Oh, and her Pulminary Function Test came back normal!!!!!  I cried, that was such good news!

On the way back home we visited my mom.  It was nice and quiet, and cool to have mom all to ourselves.  I think that's all I can stay up for right now.  I'm soooooo tired!  But today was a good day.  <3