World Rare Disease Day

More then 7,000 rare diseases have been identified, affecting 1-10 people or 30 million American

Two-thirds of American patients with rare diseases are children.

Only a few hundred of the 7,000 rare diseases have approved treatments

Please donate money to a specific research that is personal and important to you or NORD (National Organization of Rare Disorders) to keep the research going.  We need to find more cures!

 

The New Toy

  Sadie does not know how to play with toys.  She looks at them, but does not grab at them.  She used to hold things in her hands after you put them there, but she has lost that skill.  We are not sure why she lost it, but we are working on getting it back.  It seems to have disappeared around her hospital stay in January, maybe it is due to all the hand poking and arm holding in the hospital with IV's and blood draws.  Who knows, but we are working on the skill.
  Thia week her OT (occupational therapist) brought some push button toys.  They are big toys that have very simple, easy buttons to push.  It teaches cause and effect and helps her self esteem to know that she can do something and make something happen.  She loves them!  She is not to sure about using her hands yet, but it's a work in progress.  Her is some pics of her playing with her light/vibrate push button toy with her feet.  Please excuse her morning hair.  She would be embarrassed to know I put these up ;)

 

 

 

 (this is a laughing/happy look)

 

I tried to show the sequence of her pushing the light, but it's kinda hard.  Sadie would pick her feet up, put them down the light would come on and vibrate, she would laugh and get all excited, stop by pulling her legs back up and do it all over again.  It's so funny to watch her.  I'm so excited for her.  You can just see her amazement and wonder with the fact that she is causing it to happen.  It is a reminder that it is the little things in life that matter.

 

I am "that crazy mom"

  I am an trauma RN.  I am a bedside trauma RN in a hospital. I deal with patients.  I deal with all sorts of patients, broken bones to illness, rich to homeless, crazy to sane, drunks to sober.  You name them, I take care them.  No matter why the person is admitted to the hospital, I don 't get to choose if I want to take care of them.  An oath that all medical personnel take is to treat all individuals fairly and equally no matter the circumstances of their admission.  But even with that being said, it's hard not to judge and form opinions of people.
  Recently, I took care of a woman who comes to the hospital frequently, not just the hospital I work at but many hospitals, both in the state and out of state.  Why?  She is painful.  No one seems to be able to figure out the reason for her pain.  So she has slowly gained the title of "crazy", and that the pain is psychological.  I sat down and chatted with this woman for a pretty decent amount of time and learned her story and heard her frustrations.  She told me that everything that she has been through and that she looks up every disorder that she hears that could possibly lead her in the right direction and she looks up her many symptoms to see if anything goes together towards a disease/disorder.  She stated that she has been doing this for years.  I could see why people think she is crazy.  This has been going on for years and no one can find anything.
  After I left her room and had time to sit down, I started to think about the conversation.  How frustrating to keep searching for something and never get any answers and have people start labeling you crazy just because they, the Dr's, don't have answers.  Then it dawned me.  That is what I am doing with Sadie.  Yes, the situations are slightly different, but they are also the same.  We are both searching for a needle in a haystack and after a while you feel like the Dr's are not helping you and you are alone in the fight. Any teeny, tiny little clue you get, you run with it weather it makes sense or not. I no longer saw this woman as crazy, but just frustrated and desperate.  I felt her pain.
  I guess I will eventually gain the title of "that crazy mom" (if I haven't already gained it, haha).  I am ok with that.  My daughter is worth every name that I will be called behind my back and maybe even to my face.
  Guess who has learned a lesson in assuming and labeling people?  Me!  Guess who taught me that lesson?  Sadie!  Guess who will be a better person for learning that lesson?  Me!  Guess who will remain clueless and somewhat idiotic?  The people that don't have Sadie or a child like Sadie in their life to help open their eyes.  Again, how lucky I am to have her!

2 Missions

Mission 1.  To find out if Sadie has Mito disease.

  People ask me all the time "what can I do to help you?".  I say "nothing".  Why?  Because I've never been one to ask for help.  I am very independent and I figure things out on my own.  Plus, I don't exactly know what "help" to tell people.  This is both a strength and weakness for me.  I've learned over the last 15 mo that I can't do everything on my own, I still try too, but I have learned to ask for some help. Honestly it kills me to ask, but... I'm trying.  So when I get help unexpectedly, I am so thankful for it.  Especially when it's just what I needed, it makes me feel a little more hopeful.  It makes the fire under my behind a little more hotter.  I feel renewed in a way.  Does that make sense?
  My sweet sister in law (my brothers wife) joined in my mission to find a mito Dr for Sadie.  She has a connection at a childrens hospital in Indiana and asked if I minded if she asked around for a Mito Dr.  Minded?!! I asked her "why she has held out on me this long".  But, it's all good, everything comes in due time. She asked around and sure enough they said there was a good peds neurologist that works with a lot of mito kids at this hospital.  I did some research of my own and then gave the Dr's name to Sadie's pediatrician.  She is going to look him up and if she agrees then she will get an authorization from our insurance company.  Hallelujah! I may actually be getting somewhere.  We shall learn this week or the beginning of next week if this Dr is approved.  Fingers Crossed!

Mission 2. To find out what type of Pontocerabeller Hypoplasia (PCH) Sadie has.

  There are at least 6 types of PCH.  I have known this since the beginning.  Some of them are very obvious that that is not the type that Sadie has and then a couple are a little questionable, but none of them really fit her.  When I took her to the geneticist 8 months ago the Dr said that trying to figure out what type she has without her matching more of the types that trying to test her would be like looking for a needle in a haystack.  I excepted that answer.  After all, there are a bazillion genes in our bodies.  Well... I don't except that answer anymore.  I recently "met" in a support group online some wonderful families who have kids with PCH.  I don't know why I haven't "met" this group of people earlier.  But again, everything is in due time.  After chatting with them and reading some of their information, I realized that a lot of them know what type of PCH their child has.  So, it must not be too hard to figure it out, right?  I asked some questions and got some ideas from them on how to get her diagnosed with a type.  I called Sadie's geneticist today and had to leave a message.  Hopefully, they call me back today and I can ask my questions and hopefully get some blood work ordered.  We shall see.  Again, fingers crossed!

15 mo check up

   You would think by my 3rd child I would remember when a well visit with their pediatrician was supposed to be scheduled.  Nope, I didn't. Their office actually called me and asked when I wanted to schedule her 15 mo check up.  I just laughed.  Haven't they seen her enough?  Oh well, we went today.
  It was interesting, nothing to horrible.  Just things that we need to watch.  Her weight is up to 18lbs, 3 oz.  Not completely back up to her old weight, but at least she is back in the 18 lb area again.  Her height is 27 in., so she hasn't grown at all and her head circumference is the exact same as it was for her 12 mo check up. We are not completely sure why she has plateaued in all these area's.  Is it because we changed her formula when she turned a year? Is it because she has had a rough couple of months this winter?  Is it because of underlying conditions?  Maybe God's plan was that she wasn't going to grow the last couple of months?  Your guess is as good as ours.  So we are watching to see what happens the next few months.
  Our next issue is that she has had diarrhea the last week week and a half.  Diarrhea is not that uncommon for her.  But it usually only last a day or two and goes away.  Does she have a virus like my other 2 girls have had in the last few weeks?  Is it the mito disorder and absorption issue with her intestines?  Is it the increase in concentrated calories from her change in formula?  Again your guess is as good as ours?  So we are giving her little body another week or so to overcome this diarrhea issue.  If nothing changes then we are going to run some tests on her stool and see if anything shows up.  If nothing shows and it is still persistent, then we will be adding another specialist, a GI Dr.  Hopefully, this is just a virus and we will not have to go down yet another road.
  Next is her urine.  All the tests on her urine have all come back abnormal.  Probably because we have only done them while she is sick or has a UTI, however, some stuff that is showing up abnormal should not be caused by a UTI.  So her Dr wants to get a urine sample when she is healthy so that we have a baseline and to see if these 2 things are abnormal when she is healthy.  Hopefully by her 18 month check up she will considered healthy and we can get a urine sample.  Of course now my interest and concern about her urine are peeked.
  Everything else that the Dr checked out on her all checked out "normal" for Sadie.  She is still stumped about this hemihypertrophy.  It only seems to be in her leg and matches none of her current diagnoses.  The Dr admitted that she agrees that after our chat last week we really need to find out more about Sadie.  She took the list of mito Dr's that I had and she is going to do her own investigating and get an authorization for one of the specialist.  The list included Dr's from Riley Childrens Hospital in Indiana, Rainbow Babies and Childrens hospital in Ohio, and some Dr's from Detroit Mercy medical center in Michigan.  So if there are any Mito parents reading this and you have experience at any of these hospitals and mito Dr's please let me know.  Or if you know of any other mito Dr's that are somewhat close to Michigan, I would be glad to hear about them too. I don't want to waste my time and money on a useless Dr.

Heart Defects

  I find it a little ironic that Congenital Heart Defect Awareness day is on Valentines day.  Who wants a "broken" heart on Valentines Day?  March of Dimes is trying to avoid all these "broken" hearts.  In this article published by M of D it describes what a congenital heart defect is, the major heart defects, how they are repaired, how it can affect the child, how to detect a heart defect, prevention of defects and much more information.  Please take a few minute to read it.  You never know when a "broken" heart will effect you or someone you love.

  Sadie has 2 defects.  The first defect is Atrial Septal Defect (a hole between the 2 upper chambers).  She will hopefully get this fixed in the next year.  The second is an interrupted inferior vena cava.  It is rare (surprise, huh).  Approximately 1 in 5000 babies are born with it.  It is too hard and complicated to try to explain, but to sum it up in layman terms, the inferior vena cava (IVC) is the big vein that carries the blood from the lower extremities back to heart.  Sadie's IVC is not complete, majority of it works, but not all.  Her sweet, little body has figured out how to "reroute" her blood to make sure that it all gets back to her heart to become reoxygenated.  Think of it like a bad accident on the highway.  You have to get off of it and take a detour to get to where you want to go.  You eventually get there, it just takes longer.  Her blood does too, it gets back to the heart, it just takes longer.  I'm not sure if this is a repairable defect or not.  I'm going to guess not, but I really have no clue.  Luckily, in Sadie's case it does not seem to bother her at all, so a repair has never even been brought up.  Hopefully it stays that way.

Muscle biopsy frustrations

  Back in April (almost a year ago), Sadie's neurologist wanted to do a muscle biopsy to help determine if she had a metabolic disease, more specifically mitochondrial disease.  I agreed quickly without knowing much about the whole diagnosing process of mito disease.  The Dr had just come up with this theory about the metabolic disease and I was in a complete haze and completely overwhelmed with her life.  I just wanted answers to the mysteries that surrounded my little girl.
  That was when the headaches began that surrounded this whole muscle biopsy mess.  I was told that the biopsy and tests were preapproved prior to the surgery.  Fantastic!  It would take about 2 months to get the results.  Ok, I'll have patience.  I've waited 6 mo, what's 2 more?  I wait and wait and wait.  I later get a letter from the insurance company stating that the the second test was denied because the first test came back with normal results. Really?  I was already told the test was approved prior to taking a piece of muscle from my daughters leg.  I call the neurology office about the denial, their reply "we will try to resubmit the request again and have the Dr call the insurance company and see if they will reverse the denial".  I asked them "wasn't it already approved"?  Silence on the other end of the phone and then their reply  "Like I said we sill try to reverse the denial"  No answer to my question.
  A few weeks go by, I hear nothing, I call and leave a message, no return call.  Another few weeks go by, I call again, leave a message, this time they call me back and say "we don't know if the Dr has called, he never got back to us to let us know what to tell you, we will let you know when we know".  Another few weeks go by, I call, I get the same answers as before.  Another few weeks go by I still have heard nothing.
  It is now August, I just so happen to be at a different Dr's appt that happens to be in the same building.  I stop in and ask to talk to the Dr's nurse in person.  This nurse told the receptionist she is too busy to talk with me, so I request to talk to the office manager.  I was not a very happy mama.  It has been 4 months of dealing with getting the run around from this office, it's gotta stop.  I tell this manager all my issues with this office and communication that I have had since Sadie has been born.  Of course she apologizes and says wait here and she comes back with the Dr's nurse (amazing how she is not too busy to talk to me now).  The woman has an attitude the size of Alaska and says "I've done everything I can, it is up to the Dr to do his part, I have already told you this."  REALLY!?  I was beyond fuming! The office manager did not even say anything except "I will talk with the Dr and see what is going on and get back to you".  I left hating the office even more then when I walked in.  I wanted to tell them I will never be back, but then I really did not think that I would have a chance to get stuff resolved with this biopsy stuff.  So I vowed (to myself and Sadie) I will never be back to see this Dr or deal with this office after this biopsy stuff gets resolved.
  I wait another 2 months (it's now October) and can you imagine I never heard anything from this office.  I was shocked.  Not!  So I call, again, no return phone call.  A couple weeks later, I call, leave a message, they call me back and say "we still don't know if the Dr has called the insurance company, we would suggest just paying for the test out of pocket if you want the results anytime soon".  I ask "how much?"  Probably between $600 - $1000.  I laughed "oh ok, cause I have that extra money just laying around."  WHATEVER!!
  I was tired of fighting this fight.  I was tired of dealing with this office.  I was just flat out tired!  I gave up.  We were obviously not meant to find out through a muscle biopsy if she has mito disease.  I did not talk to this office again about this biopsy issue.... that is until last week (at least I had 3 1/2 good months of being headache free... from this issue :) ).
  I get a bill in the mail for over a $1000 for a muscle biopsy.  What?!  I was so confused?  1. I thought the test was denied.  2. If the test was run without my permission why have I not received any test results?  My phone calls began to both the insurance company and to my favorite neurology office that I love to deal with.  Insurance office says that it was for the original biopsy that was done back in April.  What?  I was told that it was preapproved and why am I just now getting a bill for something that was done 10 months ago?  I call the neurology office, their reply "We don't need to preapprove those".  I asked them to call the insurance company and figure out the situation and then call me back and let me know.
  Yep, that was all on Tuesday last week and can you imagine that a week later I still have not heard from them.  Shocker!!  I did call the insurance company on Monday and the neurology office did call them and they are going to do a retroauthorization.  At least they did that, but why is it so hard to call me and let me know what is going on?  I HATE THIS OFFICE!!!
  Here is the thing... I finally was at peace that this second part of the biopsy was not going to happen (at least at this time) and I had moved on.  I was exhausted from this fight and decided to put my efforts and energy else where.  Yes, I always keep it in the back of my mind and if I hear anything interesting, I jump on it, but I was not "actively" searching.  But now... I can't help but wonder if this is a sign that I need to start my fight and search again.  I know this sounds strange, but I can actually feel the fight coming back in me.  I can guarantee my search will NOT include this neurology office.  In fact, if I had my way I would NEVER deal with them again.  However, they are the only pediatric neurology office in GR and that is who the childrens hospital consults for inpatients.  I can not burn bridges.  I will have to sort of deal with them if we end up in the hospital unexpectedly (like with the whole seizure issue).  The fight is back on.  Beware world this mama is refreshed and on a mission again!  I already have lots of ideas and directions to go in.

Mr. Sucky

God blessed my girls with the best personalities.  They keep me laughing on even the roughest days. 

Insurance agreed to pay for a home suction machine and it arrived yesterday.  The girls were so excited that we received a "package".  They asked to open the bag right away to see the surprise.

After it was opened they looked at it with such a sad, disappointed look and asked "What is it?"

I replied "Sadie's new friend".

With confused looks on their faces, "Huh?"

"It's a suction machine.  When Sadie gets a cold, cough or starts choking we can suck all that junk out of her mouth".

"Ohhhh"

Then after a short, silent pause Aubrie smiles, takes the strap to the bag in her hand and shakes it (like she is shaking someones hands) and in a very sweet, serious voice says "It's nice to meet you Mr. Sucky. Thank you for helping my baby Sadie"

Chloe and I looked at each other and busted out laughing.  Where does this little girl come up with these things?!

 

Let me introduce you to Mr. Sucky, our new friend.



A breakdown and weights are lifted

  Yesterday morning I called to get Sadie an appt with her pediatrician for this stupid coughing/choking thing that she has been doing.  As the day went on though I realized that she was getting better, so I called back to cancel the appt and just ask to leave a msg for her Dr saying that I want suction ordered and questioning if she needs to see a pulmonologist.  The girl that answered the phone said "you have to be seen to get home equipment".  I knew that she was trained to say this, but I also know the relationship I have with the Dr.  If I say something is wrong with one of my girls or that I need something for Sadie, generally she listens and gives me what I want.  I did not really feel like arguing with this girl and a small part of me was curious about what her oxygen level was at while having a cold.  So I kept the appt and off to the Dr's we went at 7:30 at night.
  They checked her vitals first.  Oxygen was at 86%.  That's not good.  I told the MA the machine was not reading her oxygen correctly and to do the rest of her vitals and come back to it.  Sure enough later it was at 96%, perfect for her.  They also weighed her and it said Sadie had gained 4 oz.  The dietition was thrilled with this.  I did not feel like getting into the weight issue so I did not tell her that she just got done eating 4 oz about 5 min prior to this weigh in and the weight probably was not accurate.  Then again, who knows maybe it was a "real" weight gain, who am I to say it wasn't.
  A few minutes go by and then in enters the Dr she takes a look at Sadie, looks at me with a confused look.  She states "Sadie, looks good, sounds good, and from your report she is doing good.  So why are you here?"  I told her I wanted home suctioning, and a pulmonologist consult.  She said "you could have left me a msg about this stuff"  I said "I know."  She said "the real reason?"  I started crying my eyes out.  I have no idea where they even came from.
  What is wrong with me these days?  I am an emotional mess.  I hate it!!  I have never been like this my entire life until Sadie came along. Maybe this is God's lesson for me, teaching me to show more emotion.  I don't know.  The poor Dr. I'm sure she was not planning on having an emotional mess for her last patient of the day.  She let me cry and then there was silence.  Finally she said "It's about time you lose it.  I've been waiting 15 mo for you to have a breakdown. No one can be this strong forever".  All of a sudden all these words and thoughts and feelings came flying out of my mouth.  I told her how I feel completely alone when it comes to Sadie's care, no one seems to know anything about her "conditions", but yet no one seems to do research on their own to know how to care best for my little girl they depend on me to fill them in and even though I am knowledgeable I am not a Dr., and if she does get sick I do not have the confidence that anyone would know how to care for her, because no one cares to get to know anything about her and I will be damned if any one Dr is going to blow her off because she has special needs. I already have had one Dr say to me "not sure what all you want to do for her cause of her special needs and her outcome" I am sure it was not meant the way it sounded, however, I will never go back to see him (it's a shame, I liked him too).  I told her I was frustrated because we do not have definitive proof that she had mito disease, yet we blame everything on it.  What if we are missing something because we just blame it on mito and in reality it could be fixed if we would have looked for the real cause.  What if we say she has mito and she doesn't and her cardiologist will not do her heart surgery because she has mito.  She could end up having a "broken" heart forever and for no reason.  I have had all sorts of issues with this stupid muscle biopsy (which I will write about in another post) and I feel like no one is helping me with that issue or helping me to find a new neuro Dr or a mito specialist.  I have done all the work and I do not feel like that is my job.  That is the Dr's job.  She is supposed to pull everything together, not me.  I told her that I am afraid that I am missing something.  That in the end I do not want to have any regrets that I did not do everything and more for her.  I continued to go on and on with all my concerns and she just listened to me.
  Finally I was done.  I pulled myself together and looked at her.  She said she was sorry that I felt that way and that she feels like she has failed me and she will help me more (I felt horrible that I made her feel that way, that is why I keep my mouth shut, for that exact reason).  She also stated that of all her patients she has a handful of parents that are "real", and I am one of them.  Not exactly sure what she meant by that, but I took it as a good thing.  She said there is "no way that you should ever feel like you did not do enough.  Sadie has had more Dr's eyes look at her, more tests run, and more love shown to her in the short 15 mo of her life then some people have in their entire life.  I am pretty darn sure there will be no regrets, ever, when it comes to this beautiul little girl".  The Dr also said that she will look into some of these Dr's that I have found, see what she can find out and if they are not the right fit then she will look for Dr's that are the right fit, she promises "I don't want to let you down again".
  Even though I really had no point to go to the Dr anymore cause Sadie was doing better, it was not a complete waste of money.  I got a couple of weights lifted off my shoulder (at least temporarily) and hopefully more help from the Dr.  We will see if anything changes, but at least for tonight I feel a little better.

And off to the Dr's we go

  Well things aren't as bad as I thought they might be.  Chloe ended up just having a little GI bug that only lasted Friday and Saturday.  She went back to school on Monday.  Aubrie went back to school this week (thank you Lord! she was driving me crazy after being cooped up in this house for 2 weeks).  I ended up losing my voice and having a terrible cough and my husband had just about the same thing.
  Then we have Sadie.  My poor little girl.  She is not nearly as sick as she was last time.  No fever, no seizures, and she is tolerating her food just fine.  However, she has this cough.  A cough that goes on and on and on to the point that she can't breath and turns all red.  Then when the cough part is over she has so much mucus/saliva in her mouth that she starts choking.  Since she doesn't use her mouth/throat muscles for eating/swallowing, she doesn't know what to do or the muscles are too weak to initiate the correct response to "stuff" sitting in the back of the throat.  Unfortunately, there is not much I can do.  All I have is a little bulb syringe that barely can get anything out.  Useless!!!  I can turn her over and pat her back, but really that doesn't do much either.  So I sit and "watch".  Hoping that what I can do or have done is enough.  So far she has always pulled herself out of it, but still I find myself holding my own breath until the episode is over.
  What I need is suction at home.  I asked for this last time she got sick and we were in the hospital.  They told me that they only ask for this for kids that have trachs.  Well, this weekend I met a little girl that had some special needs and she had home suction and she doesn't have a trach.  Guess what this mama is going to be requesting again?!  So we are off to the Dr's this afternoon for me to plead my case and prove to the Dr that we really need this at home.  This would make her respiratory illnesses go a little easier for her.  These coughing/choking episodes suck the energy out of her.  She has probably been awake approx 20 hrs since Friday morning.  That is a lot of sleep.  She wakes to cough/choke and then goes right back to sleep.  Hopefully, my case will be heard and I will get what I want.
  My second reason for seeing the Dr is to ask if she thinks we need to see a pulmonologist (lung Dr).  Not that I want to add another Dr to her list, but this is the 3rd respiratory infection she has had in 3 1/2 months.  Is it because of her underlying conditions?  Possibly.  Is she just not fully getting over the infection to begin with? Possibly.  Is it because she is aspirating (inhaling fluids) into her lung? Probably not because she has never had pneumonia.  Chest x rays always show that her bronchioles are inflamed.  Is she just going to be more prone to lung infections?  Seems like it.  Ok, fine I will except that this is her. However (there is always a "however" or "but" isn' there?), somewhere around her turning 11 months or so my husband and I have noticed that every once in awhile you can hear and feel something in her chest cavity.  It feels like two things are rubbing together and causing friction and it sounds like a stomach growling.  But it's on her sides under her ribs.  It's super weird.  I've mentioned it to a handful of her Dr's and they all look at me like I am crazy and say they have no idea.  Of course it doesn't happen while we are at the Dr's.  And it doesn't last long enough for me to record to show it to the Dr.  So I am the mercy of finding a Dr who may know what I am talking about.  So that is my other reason for wanting to see pulmonologist.
  We don't go to the Dr's until 7:50 tonight.  Her pediatrician has the craziest hours.  So I will let you know later what is decided.

A week of sickness

   It started last Friday when Aubrie (my 3 yr old) started complaining about her tummy and her throat hurting.  Which led to vomiting, which led to extreme tiredness, which led to diarrhea (I know, TMI), which led to not eating or drinking, which led to dehydration and off to the Dr we went.  Diagnosis:  The "new" Norovirus.  Fantastic!  This alone made for an extremely long week.  Luckily I think she is almost healthy again.  Still working on her appetite, but everything else seems to have subsided.  Well, except for the fact that she now has a horrible cough.
  Then we have Sadie.  I am afraid she is getting sick, again.  She has not been sleeping well all week.  Waking every 30 to 45 min fussing and complaining and then slowly puts herself back to sleep. She's been snoring when she is sleeping (which is not her norm), and yesterday she had a couple of really bad coughing fits. This is not good!  This is how her RSV started.  We shall see what the next few days bring.  Hopefully it will not be another trip to the ER.  So far she is handling her food well and no signs of seizures, fingers crossed that that does not change.
  My husband is still healthy.  Myself, I am fairly healthy.  My stomach hurt last weekend, but nothing came of it and last night my throat started hurting and still is today.  But I can handle that.  The other GI stuff, well lets hope I don't get that.
  And as I am typing up this post, Chloe (my 5 yr old) calls me into the bathroom.  Yes, you guessed it.  She now has diarrhea (again TMI) and her stomach hurts.  Really? Let's hope and pray that this is not what I think it's going to be.  Or next week is going to be another long week.
  Here is the kicker.  I only work on Friday and Saturday night.  So my husband gets the weekend duty.  He does not handle bodily fluids very well.  Or I should say he doesn't handle them very well if they are anywhere but the toilet.  He will help the girls and clean them up. but the actual "accident scene", that's usually left for me.  He rolls the sheets up and puts them in the laundry room for me to clean up when I get home.  Gross!  At first I used to get so mad at him, and then I actually made him and watched him clean "the scene" before.  It was pathetic and horrible, so since then I've taken on the gross duty of clean up.  So I am anticipating coming home tomorrow morning to nastiness.
  I am sooooo over this winter sickness junk.  Time for warm weather again.  I hope all of you are healthy and that you stay that way.  Have a good weekend!

PS.  As I am writing this post, Sadie's pediatrician just so happened to call about her coming in next week for her RSV shot.  I mentioned to her that I thought she was getting sick again and asked what are the chances that she could get RSV again.  Her Dr replied "It would be extremely rare for a child who is already getting the RSV shot and has already gotten RSV this season to get RSV again.  However, I have never had a child with mitochondrial disease get RSV.  I don't know how her system will handle it.  Also, Sadie is very rare.  So for me to say that it is rare for a child to get it again, I'm sure Sadie will prove me wrong.  She has proven me wrong before so we will just wait and see how she handles it this time.  Call me if you think she needs to be seen."
  These are her exact words, not mine.  So do you see a pattern?  "Rare, just wait and see, I don't know."  This is the story of Sadie's life. *sigh*