Finally! An October spent inpatient ONLY for meds!

It was October 13, 2010 that Emily was diagnosed with Dermatomyositis, and officially diagnosed with Mixed Connective Tissue Disease.  That week, she was kept inpatient for six days for heavy-duty steroids and other meds, along with a plethora of tests to rule out other not-so-nice diseases.  It was last September 26th that she had the port placed, and it was early October when we realized she had staph in there.  That led to an almost month-long stay.  It broke her heart to have to miss the fall carnival at school and Halloween.  Granted, she was able to trick-or-treat at the hospital, but it just isn't the same.

I am happy to say that this October the bad chain was broken; we had our typical overnight for meds, then we were free to go home!  Thank you, Lord!

I didn't mention Zach again this time to our rheumy.  I believe last month was just a fast psoriasis flare, likely due to the change in weather.  He has a small spot or two, but for the most part it isn't big enough to concern us.  I'm keeping my eye out, and I know he will tell me if anything changes.  We are planning on using the Body Check Journal to see if we can establish patterns for both kids.  If you have ANYTHING that you are trying to figure out (rashes, erratic behavior, allergies, flares, etc) I strongly recommend that you try this journal, lovingly made by one of our favorite arthritis mom's.  She has discovered so much about her daughter by doing this herself, which is how she thought to make the journal!

Em's appointment went better than I thought it would.  Our rheumy was sick, and it was a bit hard to understand him over the noise and through his mask, but we decided together not to make any changes yet.  He said that studies show that Rituxan, Orencia and CellCept in combination are proven to help things like her throat issues, but it isn't something that we can do for more than a few months.  He doesn't want to backtrack before giving the combo a fair shot.  Since it's only been 2 months since she's been on CellCept, and 5 or 6 for Orencia, he wants to be patient for just a bit longer.  I'm good with that.  The biggest fear is her throat, so if this combo will help her throat the most, we will wait.  Monday and Tuesday she received her Orencia (30 mins), Rituxan (4 hours) and IViG (over 12 hours).  Wednesday is the day for her to recover from meds, and for me and Zach to recover from stress, and lack of sleep.  Poor little man has a cold, too.

It is crazy how much has changed with Em in the past month or two.  When people ask me how she's doing, I have no idea how to answer.  Here's why:  yes, the throat problem is pretty big, and scary.  However, she has been running around, trying to hoola-hoop, and she has been giggly.  Really giggly.  She sounds.... happy!  On the flip side of that, for a few weeks there she was taking 2-3 baths a day.  Usually she does that when she's hurting or stiff.  I have no idea what to make of it, but I take the running and giggling as good signs.  It's been so awesome to be home with them more!!!  I expect them both to be more giggly when we change our homeschool program.  We are just worn out from the amount of work they have around other things, like therapy.  We found a new program that I suspect will be the winner for us.  I know two families that use it and absolutely LOVE it.  They have similar situations, so I think this will work well for us.

The steroid weight has started dropping more!  She started steroids at 42 lbs. (and really under weight.)  Two months later she was 75 lbs.  Today she was 60.5!  Her clothes are falling off of her.  I had to go buy her new jeans.  She fit into her FAVORITE pair of old pre-steroid jeans!  So exciting!  I realized tonight that if she is wearing a large shirt you can't see her belly anymore.  This is helping with the activity level, I'm sure.  Oh, I am so glad!  Next month I will ask about the next decrease.  Currently she is on 3mgs a day.

Speech came into our room this morning for a consult, but she was so tired that we couldn't wake her.  Our doc wanted them to see if there was anything they could do to help her swallowing issues.  Being the skittish type, she was afraid of talking to them anyway.  I will have to psyche her up for it next month.  Another thing that was supposed to happen was an ultrasound of her hands.  This is more for the doctors benefit for now, but I suspect that it could have long-term benefits.  He is doing an informal study on ultrasound for Scleroderma hands.  I was unable to get specifics out of him, but hopefully that will also happen next month.  I would like to have the opportunity to help with some of the science involved; being a test patient is great when it's painless!  It may even help her one day.

We are talking much more formally around the house about going gluten and processed sugar-free.  We are going to try!  I expect that it will take quite some time to make the full change, but it may well be worth it.  We shall see!  I certainly want to try.  Since getting into making our own household cleaning products, I have been looking into making moisturizer, lip balm, shampoo, soap and laundry detergent.  I am hoping that this may help.  It can't hurt!  

Last thing to add is that we have a blog guest post up! The Arthritis National Research Foundation has made it their mission to highlight stories like this.  It made my day to see this made it up!  And I believe that is all.  I am so exhausted to I cannot recall anything else.  I am heading to bed.  Have a wonderful day ahead!

Test results and such

There hasn't been much time to post lately!  I have been studying away.  My last day of summer session courses is Wednesday.  I still have a lot of work to do, but I finally feel a bit less pressure.  And I've had some time to mull things over.

The test results from the EKG, and the echo were both pretty good, but the chest CT showed "an air-filled esophagus".  It took me a while to get a good answer on that but it boils down to they likelihood of dysphasia in the muscles of her throat.  The nurse practitioner replied, "

An air filled esophagus can be seen with dysmotility of the esophagus, or if the muscles are affected in the esophagus. We can see this with MCTD.  We would only worry if this affected her ability to swallow or if anything she was swallowing was aspirated. This would show up on the barium swallow.  Let us know if she has trouble swallowing or chokes easily of foods or liquids. I will try to set up her barium swallow and PFTs for the 1^st." 

I found a nifty research paper on pediatric MCTD that also mentions just this problem.    The entire article is a whole paragraph, but it does say that out of the 12 patients that they followed for fifteen years, they that:  "Inflammatory manifestations (arthritis, fever, and skin rash) improved following treatment, whereas sclerodermatous features (sclerodactyly, esophageal disease, and vasculopathy) persisted and were often unresponsive to therapy. The organ involvement-free rates at 2 years, 5 years, and 10 years were 91.7%, 78.6%, and 52.4%, respectively." 

When Emily was first diagnosed with Dermatomyositis, they did an upper GI and found that the muscles on one side were not functioning properly.  That made sense at the time; she was having trouble swallowing, she was losing her voice, and her bird-like appetite became worse.  This time... I wasn't expecting this.  It was really rather out of the blue.  And I can't help but wonder, if there is dysphasia, how long has it been present?  Is it a result of the Dermatomyositis, or is it a scleroderma feature?  I had noted that her AST, one of the liver enzymes, was just a touch elevated.  It hadn't been elevated in at least a year.  My new mantra has become, "there is no point in worrying when you don't know for sure what you are worrying about."  In every other way she is currently doing fabulously!  

I'm not sure if it's the Orencia kicking in or perhaps it is the magnetic jewelry as she credits, but her joints have done a 180 in the past week or two.  Previously her ankles, knees and hips were really bothering her.  Right now it seems to be more fatigue than anything, and that isn't even that bad.  I made her new anklets and necklace the week after coming home.  For those that don't know, we were told that magnets help somehow.  To buy a magnet bracelet is only about $10, so we thought that we would give it a shot.  She swears that it works, that it really helps with the pain.  I can't say that it really does, or if it's maybe psychosomatic, but either way it seems to help her so why not?  I can buy a bunch of beads, 5 meters of string, and a string of magnets pretty cheap, and it's so easy to make something that she will like and wear.  Since she didn't want to start the Orencia in the first place, I think that even if she thought it was working, she would still say it's the magnets!   We were told that if the Orencia starts to work then we can drop the Remicade.  Remicade is a 4 hour infusion, plus an hour for Solumedrol (IV steroids) first, IViG can be 4-24 for her, and Orencia is a half hour.  So, if we move to Orencia only, unless it is a Rituxan month, we may be able to make an 11 AM appointment and NOT have to stay the night at the hospital!  On a Rituxan month we would have to stay late; that's another 4 hour med, but perhaps we wouldn't have to stay the night.  

In other news, Zachary is doing pretty well.  Despite Prilosec, he's had a few really bad stomach nights, but I may be able to pass it off as a bug.  I'm still keeping a weary eye on the situation, given his penchant for spending very long periods of time in the restroom, but it doesn't seem to be an emergency.  His psoriasis is almost non-existent.  He has had some random pains, but nothing lasting.  I am going to ask next time he is seen what is up with his blotches.  Where there were once psoriasis scales, there are now white patches.  It may possibly be Vitiligo, which wouldn't surprise me.  I really was sure of that for a while, but they do seem to be darkening a little.  I'm hoping that by the time he is seen next they will be gone.  We shall see!  

My next post in the next few days will be from one of my paper's from school.  For our persuasive paper, I chose to write about what I know best- the myths and misconceptions of Juvenile Arthritis.  If we all help to raise awareness,  perhaps one day we won't need to.

 

Unexpected tests and such

I swear, sometimes I jinx us.  Just the other day I posted on new research that points a bigger finger towards developing Scleroderma for patients with Mixed Connective Tissue Disease.  The funny thing is that, while she has had the sclerodactyl hands and some wrist involvement with the skin on her wristsfor years now, it hasn't really been brought up at all by our current rheumy group.  Until yesterday.  And it wasn't that Dr. S was saying by any means that this is turning; it was more like, "we need to run these specific tests every year so that we catch any disease progression just in case it turns into Scleroderma."  Now, I know that having MCTD puts her at a much higher risk of pulminary fibrosis than almost anyone else, but this is the first time that Scleroderma has been brought up.  So, last night she had a chest CT with contrast, and an EKG.  She had an echocardiogram a little while ago, and she's supposed to be scheduled for another Pulminary Function Test.  It was just surprising.  She did NOT like the echo.  I truly didn't think it would be a big deal, but she said that the ultrasound probes hurt her. She didn't like the contrast for the CT, either.  She spent quite a long time in tears about that, despite my explaining that it was just a dye.  At least they are both over now, done for a year or so.

Leaving for the hospital, I knew that there was something important that I was forgetting.  I knew we had another concern to bring up but I could not remember what it was until after the doctor left.  Her hearing!  Lately we've noticed that her hearing is not that great.  There are many things that she doesn't hear correctly.  I know that, while it's very rare, there are actually joints in the ear that can cause hearing loss.  I believe that it could be the sinus pressure is starting to build once again.  I can't believe that we forgot about that!  I did have a chance to ask the immunologist about it (because he is the one covering for rheumatology today).  He didn't say too much about it because he couldn't see any problems.  But, he does feel that we should schedule a hearing test.  I assumed that would be the case.

The other thing that we were curious about was her current rash.  She's had one like this before.  It starts out with one or two areas that look like mosquito bites, but more keep coming.  They are just red spots.  When she itches a lot, the middle gets a little speck of blood.  They don't respond to Benadryl.  I hadn't even thought to try cortizone on them.  Dr. S agreed that it is likely an autoimmune rash.  He said that often with rashes that are associated with an autoimmune disease that is being treated, they don't look the same as they would in non-treated disease, so it is more difficult to know what to attribute it to.  MCTD'ers are more likely to break out in different types of rashes than people with JA or RA alone.  She's had more vasculitis-type rashes on her face and hands, too.  She gets spots that look like small pink blotches in those areas.  On the bright side, he was showing a medical student what he looks for when looking for dermatomyositis.  He explained that he can't show her much because he sees no active disease!  That made my day!  :)  At onset, she had the speckled capillairies, the pink elbows and knees, more spots on her hands (they didn't look like Groton's Pauples to me, but I guess they were), and she had the classic heliotrope rash around her eyes.  Right now, she looks darn good! 

I am not used to her needing Zofran before Methotrexate yet, and we both forgot about it! So at 1:30 A.M. she was still awake with a sore tummy.  The nurse called the doctor, who added Zofran in.  She was able to sleep after that, at least.  Of course, respiratory came in at 6 to give her Symbicort, along with vitals every 4 hours.  She's tired, and she just wants to go home but she's doing well.  At least now we're in the home stretch.  She's got her Remicade going now; when it is done, we are free to leave.  I had originally thought we would be home by now.  Ah, well.  At least she's got chips and TV.  She's comfy, so it's all good. 

Due to the holiday, I'm not sure when we will have her test results, but I will post more once we have some answers.

Favorite New Site

     Today I was lucky enough to stumble across Rheumatology News, a website devoted to research articles of the different rheuamtic diseases.  I was pleased to find that they have a section on Lupus and Connective Tissue Diseases.  While hunting there, I found this article, whose author believes that MCTD is a subset of scleroderma.  While I would love to say that the author is wrong, I believe that she is correct.  I have told several people in the past that I see more Scleroderma symptoms in my daughter than Lupus symptoms.  She has significant hand involvement; her hands are very affected by Raynaud's, arthritis, Scleroderma features (including the sclerodactyl look.)  Her wrists have been affected by Scleroderma in the past, also.  She has had some issues that I don't know how to classify, or how to attribute.  While I don't put a whole lot of stock into research anymore because much of it turns out to be wrong,  I also know that this is far from a fully- proven piece, and there is a lot of research needed to explore this theory deeper, it is something interesting to think about.  What I'm really hoping is that this research will get more funding for some of the diseases in this spectrum.

      This is what I remember reading when we heard the words "Mixed Connective Tissue Disease" for the first time.  "Some studies have found that patients who originally were diagnosed with MCTD often over time develop predominantly the features of one disease (such as Scleroderma or Lupus)", writes Coburn Hobar, and Arnold Postlethwaite.  (See footnote). 

The Lupus Foundation seems a little confused on the matter, but this is still a good comparison between Lupus, RA, Scleroderma, Ssc,Vasculitis,  the Myositis diseases and Sjogrens. 

While looking for statistics, I found this awesome slideshow, presented by Janet Pope for the 2006 Scleroderma National Conference.  While a bit incomplete on a few slides, overall it is excellent for anyone that does not have a basic knowledge of Scleroderma, Lupus, RA, MCTD or Poly & Dermatomyositis. 

 My searching wasn't only limited to MCTD today.  I was first led to an article on Rheumatology News  called "New Anti-Inflammatory Drugs Will End Anti-TNF Dominance., (by one of my Dermatomyositis board mom's) and then I found this article on a new study drug that is showing strong promise for psoriasis.  It does not mention psoriatic arthritis, but I imagine if the drug is similar to Enbrel that it will likely work for PsA.


*Coburn Hobar, M.D., Rheumatology Fellow, and Arnold Postlethwaite, M.D., Professor of Medicine and Director, Division of Connective Tissue Diseases, University of Tennessee Health Science Center, Memphis, Tennessee, and Department of Veterans Affairs Medical Center, Memphis, Tennessee (originally published in "Scleroderma Voice," 2003 #1)

So much happening!

Oh yes, there is a lot happening.  Where to begin?

As I mentioned previously, we now have an advocate working for us.  She was hired by our insurance company.  Crazy, eh?  I am so relieved.  She told me the other day that her job is to make my life easier and to help us to have less stress.  So far she has helped to get Orencia approved, or at least make the hospital aware that they had it wrong and it was approved in the first place!  And she has managed to get us a hospital bed coming!  I have said before that Emily likes to sleep almost sitting up.  She is more comfortable in a hospital bed than she is at home.  She really wanted a Tempra-pedic mattress, and insurance doesn't cover those, but they assure me that this bed will be comfortable.  She is so excited!  It should be here Tuesday.

Monday we went to the Opthamologist for Emily.  She had told the doctor at our last visit six months ago that she was having trouble seeing the blackboard.  He said that her vision was perfect.  Perhaps it was.  Right now it's 20/30.  We should have her new glasses in the next day or two.  She's actually excited about that.  LOL!  She's so darn cute.

She's been losing a LOT of steroid weight by the looks of it.  We don't really notice it, but certain things jump out at you.  For instance, her pants were all a little tight on her a month or two ago.  I noticed yesterday that she's rolling the top of her pants over now, and she still has to pull them up often.  I had to remind her that I made sure to buy only adjustable waist banded pants.  :)  It's nice to have a visual to show us that it's really changing.  She's been looking really good the past couple of weeks.  She has some color, she's been dancing around, and tonight she was singing in her room for about an hour.  It makes my heart smile.

Both kids are extremely excited to be on summer vacation!  In some ways I wish that I had waited until fall to start school myself.  I wish that I could be home enjoying them more, rather than spending almost every second working.  Every once in a while I take a "CityVille" break.  Mindlessly clicking helps to clear up the fuzziness of the mind.  I really wish that I had realized that summer courses are half of the time that regular sessions are, with all of the same work.  I would have kept my English Composition class, but maybe not have done any math.  Math has always been my nemesis, and while I actually rather enjoy many aspects of it now, learning new concepts is just as frustrating as it was years ago.  Thankfully, I am more determined now.  I need every extra second that I can get to study.  I keep telling myself that I am doing this for the kids.  I so love them!

The last crazy thing is that our first ever new car (which is old now) toasted- on my first full official day of part-time working status.  /Sigh.  It's a Toyota.  I bought Toyota because they don't break.  I love Toyota, and I always have.  The darn transmission went.  Tranny's never go bad in Toyota!  Or at least not often.  There went a whole bunch of money that we didn't really have.  At least we were able to handle it.  Thankfully, we have a Scout friend that has a repair shop and Kevin has helped him in the past.  We now owe him BIG TIME!!!  He let Kevin bring the car there, and then he even helped Kevin all of Tuesday work on it, and lent him his own car to use until ours is running again.  Thank you so much, Ray!!!  If we had to take this in to someone it would likely be around $2,000 in work.  We are looking at probably about $1000.  It sucks that it had to happen but again... the blessings that we receive....  It's amazing sometimes seeing how God works.  We are so blessed.  

Lastly, we have so JA families that are really struggling badly.  I don't have permission to name them but there are two in Florida alone that really need prayers.  JA affects so much more than just joints.  One girl has vasculitis in her brain- swelling in her brain.  Please pray for these families.  We have friends in NY struggling, in NM, in CA...  So many kids that have it so hard.  Please pray fo them.  

 And it is so past my bedtime.  Until next time...

True Love

It is hard to put into words how much you love your children.  I think I love all of mine equally, yet differently.  Certainly I have different relationships with all of them.  Ashley was always fairly independent.  She was always off with friends or biking around the neighborhood.  She was a typical kid.  Now she's become quite an extraordinary young lady.  She's going to be a pretty amazing adult.  I can definitely be the mom to her but I can also be friends with her.  We have achieved a good balance.  Zachary is a lovely little guy, working hard on becoming a little man.  He's a regular boy, but he's sweet, sensitive and lovely to a point.

We have different opportunities with Emily.  On the one hand, she's so much more grown up than she should be.  On the other hand, she's still so much like she was when she was five.  She still cuddles and needs us like she did back then in many ways. 

With our other kids, we look at them and see how they are growing up.  We see different opportunities in their lives;  we see them able to kind of do what they want to do.  For Emily, something always seems to go wrong whenever she has something planned.  And it kills us to see her so sad, but she always seems to bounce back.  I guess the hardest part is that she shouldn't have to miss so much.  Looking through her school yearbook tonight I thought of so many events that she wanted to go to that she missed.  And it isn't fair.

I am usually a rock.  I have learned how to survive and deal with the stress as it gets thrown at us.  I try to always do it with a positive attitude.  This is our reality.  It's times like tonight, driving in the van on the way back home from the hospital, watching her in the rear view mirror and thinking about medicine changes and disease progression that I really start to feel like I've been punched.  I wonder what her adult life will be like, and if she will always struggle, if she will always be so sick.  Sometimes I think that I have gotten so used to all of the medical stuff that it doesn't really hit me, like I try not to think about everything too much.  When I do it makes me so sad.   We have to love her harder, be more gentle.  And no matter how much crap gets thrown at her she is always so sweet, so cuddly and gentle.  And I have to say that right now I have actually grown to appreciate a bit how puffy the steroids have made her.  She's extra-cuddly.  I'd rather have her off of steroids but I can try to appreciate the little things, right?

 While waiting in our hospital room, I spent some time cuddling with Emily on her bed.  One thing that I noticed was her sweet smell.  When she was eight, before she started taking steroids and so many other strong daily medicines, she still had that sweet baby smell.  That was yet another thing that Prednisone stole from us when it gripped her.  Today I could smell that again.

While she still gives great hugs, before she got really sick she used to give the best hugs ever.  She would wrap herself around you and cling tightly with all of her might.  It's days like this, cuddling in a hospital bed, that I wonder where the time has gone.

We did have good news tonight.  The Cystic Fibrosis test came back negative.  I assumed that it would, but it's still stressful waiting.  The Orencia that I wrote about yesterday was not approved through insurance today, so we will wait and see.  There is a constant up and down in our lives of extreme good and extreme bad- our counterbalance.  We certainly have rough days, but I wouldn't trade any of them. 

Crazy day coming to an end. (Long)

Today went by in a whirlwind!  We both had a difficult time waking up this morning, but we actually got to our first appointment on time. We waited for about ten minutes to be called for the CT scan of Emily's sinuses; the actual scan was even faster. She did very well. She was a little scared once the machine picked up speed. It sounds like the whirring of a washing machine. That can be scary when you are not expecting it, especially when it is over your head.

From the CT lab, we wandered upstairs. We had a longer stay in the pulmonary waiting area, but they called her at exactly nine. The tech that performed the test was such a sweet lady! In fact, her daughter has chronic conditions, and we share a doctor. She was telling me how her daughter decided that more kids needed things to do in the hospital, so she decided to gather supplies and bring them to kids in a wagon. She was seven years old at the time. That really touched my heart!

Anyway, the tech was wonderful. She made Emily feel more at ease, and she explained everything very well. She took gauze and soaked it in a solution made to produce sweat, then she wrapped the arms, put electrodes on them for five minutes per side and wrapped them in ace bandages. Em grabbed the tablet and watched "My Little Pony" for the majority of the time. When we finished there it was already after 10:30. We walked down to the fourth floor to let them know that we may be late. I'm so glad that we did! Emily hadn't eaten yet, and we still had to get to the ENT for eleven. I stole a few minutes and grabbed her some chicken from Wendy's. The wait was interminable!
We actually made it to the ENT on time. I don't know how considering that we had to wait for valet to bring the van. (Using valet is so much easier than walking for blocks with a hurting, tired child and a bunch of stuff that you need.) I had thought that we were in the home stretch. We would have been, but the ENT was running about forty-five minutes late.

I really thought that I knew how this appointment would go. I was not expecting to see so much inflammation still on her CT. Her right side is nice and clear. The left side remains all swollen and shady. The doctor can't say for sure that it's mucus. What they do know is that it is inflamed. They decided not to worry about treating it right now because she has not displayed any symptoms of a sinus infection. Of course, they didn't have the results yet from the Cystic Fibrosis test. I am assuming that will be negative.


We did not get back to the hospital until one P.M.   I could not believe that we were so late! I was very thankful that I let them know that we may be held up. Shortly after arriving we met up with an advocate who works for a company that works closely with our insurance company. She asked me a ton of questions, and she told me that she will try to get us whatever help she can. Her job is to help get medicine and equipment approved, help to find resources, programs, clinical trials, and things of that nature. She flew in just to meet with me for about an hour. I was very impressed. We are going to work on getting a hospital bed approved!  What a blessing this service is.  And she was wonderful!

After she left things started to settle down a bit. The rushing around was mostly done; we just had to wait for the IViG to get started so that we could move to a room. I didn't expect to see a doctor since we did not fill out any of the paperwork, but as we were packing up to head to our room for the evening our main doctor came over. We totally love her!!! She is just so sweet, but she also has more years of experience than the other two rheumatologists combined. She did the strength tests and was very pleased with Emily's muscle activity. We talked a little about medicines- mostly which ones Emily is on and which dosages. She had just started looking at Emily's hands when she asked if we thought that the Remicade was doing enough. I replied that I didn't think that it had been quite enough for a while. Emily was actually doing so well today that I was surprised that she even asked. She told me that, as much improvement as she has seen in Emily, she doesn't think that it is quite enough. Because Emily now receives her IViG to boost her immune system back up, she feels more comfortable about aggressively attacking the arthritis. She wants to see her running more, being more active, and acting like a kid. If insurance approves it, tomorrow she will be starting Orencia again. She had three doses with our old rheumatologist, but when we changed doctor's, they chose the right route, which at the time was high steroids, Methotrexate as second line and Remicade as third line for Dermatomyositis. It wasn't thought to have any effect on DM before, so we changed. Emily is a little nervous, but I'm actually a little excited. We are pushing the envelope, but lately she's had more days where something hurts than not, and that isn't how it is supposed to work.

As one last little shocker, once we moved to our room and got settled the nurse announced that she was going to briefly stop the IViG and give her a round of Rocephin, a good all-around antibiotic. At first, I was very surprised, wondering what I missed. It was a very long day. I realized that Dr. E likely saw the CT scan results from this morning, saw the inflammation, and decided to tackle it. This is one of the reasons why we love her! She isn't afraid to treat the WHOLE child. While some doctor's only take on little pieces, she takes over everything that she can. And this is why we would rather drive two and a half hours from home instead of drive an hour away.

We shall see what tomorrow holds. It will be today by the time this posts... Hopefully we will also know the results of the sweat test no later than Wednesday. Praying that tomorrow is an easier day!