Better Late than never

We finally had our follow up visit at Scottish Rite a few weeks ago (August 26) and I'm sorry I'm just now updating. Great news, she does not have Periodic Fever Syndrome which is what we thought she had way back when, her genetic testing came back negative. The rheumatologist said she still wasn't sure how her fevers fit with the arthritis...but it definitely fits somehow.  "Normally", the fever that is associated with arthritis spikes at the same time daily and obviously Molly doesn't present that way, she does things her way!  The good news is the fevers seem to be well controlled with the Naproxen and Methotrexate, in fact they were almost gone (except for the one while we waited on the Methotrexate refill).  The other great news was she showed NO inflammation when we went, so although we were seeing signs and symptoms that she wasn't feeling great again, we're confident now that we're back on the Methotrexate she'll be good to go.  Although it was frustrating trying to get the refill for 6 weeks, I think that was God's way of showing me that she definitely needs that injection...I had been questioning because she did so well but I wasn't convinced it was because of the injection. Now I can say "OK, God....she needs that weekly injection, even though it's hard to give it. I will suck it up and give it to her."  I have to admit she takes it like a rockstar now, with no tears and minimal crying.  We now call it a "shark bite", that's what she started calling it during shark week and gave us all fake shots with the toy syringe.  So for now, we're just chugging along like nothings wrong with her, she rarely complains the last couple of weeks. 

She's also started a Mother's Day Out program so she gets to go to "school" 2 days a week. She's not loving it right now but she gets better every time she goes. Although she has them fooled into thinking she's a princess or something.  Her teacher says she won't drink unless they hold her cup for her and she won't eat unless they feed her. She's a smart little girl who knows how to work the system, so I've informed her teachers to let her go hungry or thirsty...she is more than capable of doing it herself.

NEED MORE MEDICINE!!!

   I'm so ready to get Molly back on track with her medicine!!   Just when I thought we were ok with Molly's fevers and *knock on wood* they were gone....well this weekend I noticed that she start acting lethargic and whiny which happens before her fever, and Sunday she started.  It was 101 on Sunday and 102 yesterday and today. Poor girl, although she's not been nearly as lethargic this time.  The doc didn't think her fevers and arthritis were connected, and honestly I was really sure it was either.  I'm convinced now.  She's been telling me her legs and ankles hurt, her left knee is swollen (it has been for a week or two), so I'm convinced they're connected and the Methotrexate was actually helping. I believe this is God's way of showing me He's in control and giving her the weekly injections are beneficial (I was questioning it).  For a small time I felt like we were "normal", we didn't have to worry about fevers and all that jazz.  On a positive note, I should have her Methotrexate refilled by tomorrow (it's been over a month), I'm ready to get her back on track.  I'm also ready for our follow up visit so we can hopefully find out about her genetic testing.

New day, new joint

 I wish I could report that everything was great with sweet little Molly.  I noticed today that her left knee is swollen now, which until now has been unaffected . I thought we had things under control and even though she occasionally complained of something hurting she didn't let it hold her back.  I had to reschedule her follow up visit that was supposed to at the beginning of July and they couldn't get us in any sooner than Aug. 26.  When I finally got someone to call me back from Scottish Rite to tell them that she was 2 weeks late on her lab work, mostly to check her liver function while on the Methotrexate.  The mailed me lab orders, which took another week.  So we got her lab work done yesterday, a month later.  It wouldn't be a big deal except we needed a refill for Methotrexate and can't get one until she had her lab work.  So, now we wait for them to send a refill...I'm hoping sometime next week.  In the meantime, we're out, which means she'll miss a dose or two or three, depending on how long it takes them to get me the refill.
 
   In all of this we are still so blessed that we're all healthy, that Molly hasn't had any fevers (say a prayer and knock on wood) and that Molly (from what I can tell) has a high tolerance for pain or she's so determined that she doesn't let it hold her back. Although I wouldn't wish arthritis on anyone, especially a sweet innocent (maybe not so innocent) child, Molly definitely has the spirit in her to fight it and come out on top.  That child does not let ANYTHING slow her down! And for that I'm very grateful.

Seasons of Change

  The first season of change is the fact that right now everything with Molly is great!  She has been doing fabulous since her joint injection. She was scheduled for a follow up on July 1st, but we escaped to Colorado for 11 days and when I called to reschedule her appointment at Scottish Rite, they're next available appointment wasn't until mid September.  It took 3 calls and leaving messages to finally get the nurse to call me back, I've been calling since we got back a couple of weeks ago and they just called me back today.  Now I have the nurse's direct phone number.  I was concerned because she's due for lab work to check her liver function among a few other things and we're almost 3 weeks late getting it.  We can't get a refill for Methotrexate until we have lab work, which we couldn't get done until they send me some lab orders. They also moved her appointment to August 26.  We are headed in the right direction again. We have also been fever free for quite some time, I can't remember exactly when her last fever was, but it's been almost 2 months I think! WooHoo, that's a huge blessing!!  Molly really has been doing great, we hiked into a cavern in New Mexico and hiked up mountains and around lakes in Colorado and she did it all without complaining.  She asked to be carried when she would get tired but for the most part she wanted to be in the middle of the other kids.  She's running, jumping, and going nonstop.   She's only complained of her knee hurting a few times, when it rains or when it was unusually cool in the middle of July.  I have a feeling she may complain more during the winter but only time will tell.  Right now we're also trying to put a little weight on her.  She's fluctuated between 17 and 18lbs forever, she was 17 pounds at her well check visit at the end of June, which means she had lost a little weight.  We tried her on the Pediasure Side Kicks and she likes it, so we'll continue giving that to her at least for now.  She's just destined to be the runt of our family and I don't think that bothers her one bit.

     Another season of change coming in our house is school starting.  I really had my heart set on homeschooling and although I still do want to homeschool, we've made the decision to send our oldest, Will, to Kindergarten this year.  He will enjoy it and I'll learn to cope, LOL.  I've gone back and forth with what the right decision might be but after lots of thought and prayer, I've decided I need a break.  This past year was stressful and busy.  I know, I know, every year is stressful and busy in it's own way, LOL, but I don't have the energy to plan and execute a homeschool plan this year.  We'll regroup next year.  As most homeschoolers know, you just take one year at a time, we'll do the same.  With this season of change comes a new schedule too.  We'll all be getting up earlier and ready for the day so we can drop Will off each day.  The Lord will help me with that....I am not a morning person, never have been and I don't think I ever will be.  I'm excited for these changes but it will take more self-discipline (something I'm not good at!)

    One last season of change coming....new discipline, for everyone.  The children have gotten a little out of control. I don't mean my kids are bad, innately they are actually very considerate, tender hearted lovable little people, however, when I ask them to do something, they don't listen. They've gained this sense of entitlement and selfish attitudes.  I knew we needed a change.  A friend (well several friends) recommended a book called Shepherding a Child's heart.  If you haven't read it, read it! I've read lots of parenting books and take bits and pieces of each one. Some are laughable and some have some pretty good advice.  The best parenting book, well that would be the Bible.  I've recently told myself that I'm too lax, I give my kids too many warnings and let too many minor things slip by, the effect is my children think I'm joking when I tell them something.  Well, that's the reality I am joking because I'm a lazy parent and don't often follow through with empty threats.  This is ending now. I will mean what I say and say what I mean. No more empty threats, and there may be an increase in spanking for a little while until I regain control of my beautiful little people. I can't point them to the cross if they don't respect what I say. I writing this so I have some accountability, so if you see me being a lazy parent, tell me to stop.

    There are several seasons of change coming to our household. God will provide and guide us and I will rely on that.  We will make it through and learn and grow as a family with these changes coming.  In a little more than a month will mark the 1 year anniversary since we began this crazy journey with Hot Ta-Molly and I can't wait to see what the future holds. We continue to pray that Molly thrives and lives as pain free as possible, so far those prayers have been answered the way we've selfishly hoped. Thank you all for your prayers, we truly feel each and every one. We are better than we deserve!

Fun times!

Ok, I'm really bad at writing on a regular basis, but as the saying goes, no news is good news!     Molly has been doing fabulous!!  We just got back from a 10 day trip to Carlsbad Caverns in New Mexico and Denver,CO to visit my brother.   Molly did lots of running, jumping, hiking, and did not complain one bit.  I am so thankful for the steroid shot she got, it has definitely helped tremendously!  She still gets stiff after long car rides, naps, and in the morning, but she doesn't complain about it like she once did.  I'll have to call Scottish Rite to see about her follow up appointment, it was supposed to be July 1st, but we were busy hiking around Colorado and when I called to reschedule they pushed us back to the middle of September.  The problem with that is she's due for a refill of the Methotrexate (which I'm not convinced she needs now) and she's due for lab work to check her liver function, so we'll see what they say tomorrow.

Another Trip, another doctor's visit

    Today has been a busy day. When I called the nurse at Scottish Rite yesterday she spoke to the doctor and asked if we could be there today at 8AM. "Sure" I said.  She said they may need to give her a steroid injection in her knee, but they wanted to see her.  So, we loaded everyone up in the van at 5:15AM....let's just say that's way to early!!!!  We ran into more traffic than usual but still managed to make it there just before 8 and dressed the girls. We had literally picked them up out of bed and put them in the van, so the 10-15 minutes it takes to wrestle them in clothes was done in the parking garage.  The really were troopers and just went with it.  We got checked in at the main desk then headed to the clinic to check in.  The gentleman at the desk talked to Will and Caroline, then told Caroline that she could have the pink bear he put on the counter.  She ran to Will and said "I want you to go with me..." so he did. He really is the best big brother! Then he gave Will a really cool batman toy. Molly also got a teddy bear.  I'm not sure what we're going to with them all, but I'm thankful that it gives something for Molly to look forward to.  Molly starts whimpering every time someone walks in the door and then starts screaming and crying when they touch her, even if it's literally a small 1 finger touch.  She likes to make her protest loud and known! The nurse came in, then the nurse practitioner (NP).  The NP said she felt like she did need a steroid shot in her knee.  Not exactly what I was thinking or hoping for, I was thinking a little physical therapy first.  I guess since the Naproxen doesn't help much just by itself and the Methotrexate hasn't had time to get into her system, the best thing would be the steroid injection to kind of jump start things.  We were educated on what side effects to watch for, we were also told she would need to wear a brace for 24 hours just to try and keep her from bending her knee and that she needed to rest it. The doctor came in to say hi and brought 2 students to take a look at Molly. She explained to the students that when the knee is swollen there is extra blood flow and sometimes it can actually cause that leg to grow longer.  That's not what I thought....I thought it would stunt the growth because of the inflammation.  They do measure around her knee and the length of her legs every time we go.  Then physical therapy came in to fit her brace, she laughed when she came in and looked at Molly, the brace she brought with her would have fit around her entire body.  She came back with a much smaller brace and we got it fitted. They put numbing cream on first and we walked around a little bit and ate some breakfast in the cafeteria.  When we got back a Child Life Specialist came to talk to us. Her specialty is child development and how to help children cope with being in the hospital or clinic. She was great! She talked to Will and Caroline a little bit about what was going on, she also gave me her card and said as things change and progress if I have any questions or concerns about how to explain things to Molly and help her cope just to call her.  When it came time for the injection, Chris took Will and Caroline out of the room.  The Child Life Specialist got on one side and I was on the other, she talked to Molly and rubbed her head while they were prepping and during the injection Molly grabbed her hand. It was really sweet! The really do care for every aspect of the child at Scottish Rite. They try not to upset Molly. That's an impossible task...she has a lot of anxiety about doctors right now, but as soon as they're done she's ok and stops crying, today she even gave everyone high fives when we left.  I really am amazed at the helpfulness of everyone.  When we were finished I was carrying Molly and getting the stroller to push and they nurse insisted on pushing it for me to go and find Chris. How cool is that!?!?  Then she took us to the front desk to get coupons for free popcorn, they kids thought that was the coolest thing ever, they all LOVE popcorn.  Here are a few pictures. (I finally figured out how to post pictures!)



Here is our crew with their toys! They really were excited.



We were told to try to make her rest her knee as much as possible. No problem I thought, she's stuck to me like glue anyway, she's been ultra clingy lately.  I was wrong, oh so wrong! She did not want to be held...even with that huge brace on her leg, she wanted down. She hobbled around and I should really video tape it because it's kind of funny, but at the same I'm thinking this girl is awesome! She really doesn't let anything slow her down! It makes me proud to be her momma, she's a fighter and an overcomer.

Sweet girl cheesing...she's resting on me, for about 10 seconds.

 

After we left the appointment, my plan was to have a picnic at the park they have there but the park is closed for construction. Boo! Since the kids were happily eating their popcorn and weren't really ready for lunch since it was 10:30ish, we decided the Dallas World Aquarium would be fun. And it was! The kids were surprised and loved every minute of it.  A few times I thought Caroline would end up in the water because she kept climbing on the outside of the exhibits. I am relieved to say that it didn't happen.  I tried holding Molly or pushing her in the stroller but she only wanted down...to walk around.  I think Will's favorite part was the sharks of course and Caroline and Molly's favorite part was all of it, LOL! If you haven't been, you should go!



Molly relaxing when we got home with her huge brace! She is tolerating it much better than I anticipated.



  

I really thought they would be exhausted and ready for a nap, I know I was, but Will stayed awake most of the way home and Caroline talked to herself or us for 2 hours, all the way home. Molly closed her eyes as soon as she got in her carseat.  We got home and played for a little bit, Molly who was supposed to be resting was busy climbing and jumping on the couch, I think it's safe to say she may be feeling better.   She also got her Methotrexate injection, she was really upset about it today, but we did it quick and then I got to snuggle her.

Pictures

This is what Molly thinks of fevers, LOL. Mostly I needed to test posting pictures from my phone to here.

Phone calls and Prayers

      OK, obviously I'm not the best at writing a post daily. Life happens and the past couple of weeks have been super busy and I'm now exhausted!  We've had some play dates, we sorted lots of garage sale stuff, had 2 days of garage sale at our house. We only hosted, it benefited a ministry called Legacy Closet which helps foster families with beds, bedding, clothes, shoes, car seats, and pretty much anything else they need when the get a placement. I've been volunteering with them and they are awesome ladies who are foster/adoptive moms themselves, they truly are amazing! We've also sold my husband's truck and bought a new (to us) Jeep. We celebrated Memorial day at my parents house with lots of great food and great company. We've celebrated my dad's birthday. I've gone to a homeschool used book fair with some great friends.  It's been fun, but I'm hoping this coming week is a little more laid back and I can get my house back in order.
       Tomorrow will be full of phone calls. A call to set up well child appointments for my 2 girls, a call to set up dentist appointments, a call to our Rheumatologist at Scottish Rite, and I feel like I'm forgetting about something else.  I need to call the Rheumatologist to find out if we need to start physical therapy or if they want to see her sooner than July. Molly will no longer able to straighten her right knee at all, this was the first joint to start swelling. I tried stretching it out and gently pulling it straight and she started screaming.  :(  It breaks my heart to see her in pain.  I will also need a new prescription for the Methotrexate. I have one week left in the bottle I have.  The last dose I gave her I didn't bruise her leg, so I think we're getting the hang of this new normal.  We also just finished another fever episode. It started on Tuesday night and yesterday, Saturday, was the last day of fever.  It was more severe than the last one, her fever did get up to 105 several times, but came down quickly with Tylenol, and was less severe than they were before the diagnosis. She still takes Naproxen twice a day and I think it really helps with the fevers since it's an anti-inflammatory.  I have noticed that during a fever episode her joints really hurt and bother her. She refuses to walk most of the time during her fever episodes and wakes up frequently still saying "owie".  She doesn't eat much, so she doesn't have a lot of energy but she doesn't want to sleep either. It's a vicious cycle of a hungry, uncomfortable, sleep deprived toddler....it doesn't make for a very pleasant household those weeks, but we manage and my other 2 kids are so compassionate and do what they can to try and entertain her or bring her things to help her (and me). Those 2 older kids of mine, Will and Caroline, truly are amazing and God designed them to be Molly's big brother and sister.
        Until next time...I ask that you pray for peace and understanding for us as we still travel through diagnosis and treatments and possible physical therapy.    I also ask you to pray for our pediatrician who lost her son to suicide. It's a tragic situation but I know God is holding her and her family in His hands, helping them through this struggle.  I also ask that you pray for the Eynon family, the father was killed in a car accident that also injured 3 of his children. The little boy is fighting for his life on life support. The mom and another daughter were not in the car. Our whole community was touched by this man and his family, I did not know them personally but so many people I know did and talked about what an amazing chiropractor and Godly man he was.  One last prayer request...a sweet little girl we know, Kassidee, was transferred to Children's Hospital in Dallas. She's a sick little girl but they're not sure what's going on. Pray for peace and understanding for each of these families dealing with tough situations. God has a plan for each one.

Bad Days, Ice cream, and Brotherly Love!

   I think we're headed back to some bad days in the near future.   Molly has been clingy and crabby. I have a good feeling that we're headed to some bad days, maybe a fever episode. She doesn't want to play, she only wants to be held and cuddled (unless she's jumping on the sofa...which she's not allowed to do).  She's been having a hard time sleeping. She hasn't been eating much.  These are all things I've come to recognize happen just before a fever episode.  She should be due to have an episode in about week, so we'll wait and see.  In the meantime, I'll pray that she doesn't have an episode and if she does that it will be mild and easily controlled.  I'm also praying that if she does have a fever episode it doesn't cause a setback or additional joints to become inflamed. So, I ask that you pray for us.   She's been favoring her right leg again, her right knee was the first joint that was affected and what started this whole snowball.  That's what I feel like the last 6 weeks or so have been, a snowball that started small and started rolling down a mountain. 
   On another note, we now have successfully given 2 Methotrexate injections at home. Well....I did leave a bruise both times.  :(   I feel really bad about it, but I think I hesitated each time and I think she moved some.  Let me say...it's really hard to give an injection to a wiggly almost 19 month old.  My husband holds her on his lap while I give her injection, I feel like we need 2 more people to hold her down, LOL.  I have even more respect for all of the nurses out there who do this on a daily basis, they truly are awesome!  I am very thankful she gets over it pretty quickly and still wants me to comfort her, so she doesn't hate me. We haven't seen any side effects from it yet, but I assume as it builds up in her system over the next few months that we may see some of them. She also takes a folic acid tablet each day that she doesn't get the injection.  The whole family enjoys this because it means after dinner we all get ice cream! We have to crush the tablet and feed it to her on some type of food. We choose ice cream because who doesn't love ice cream!!  Our other 2 kids are loving it and so is Molly.  I have to tell a quick story about Will.  He truly is the best big brother and I believe God had picked him to be Molly's big brother, he is so caring and sweet.  Tonight after dinner we got the ice cream ready and put her special "sprinkles" on it, I started to feed it to her and she said "no, no, no".  I tried to let her feed it to herself and she said "no, no,no".   We're definitely headed towards the terrible two's, LOL.  Will came over and sat on the floor and started telling her  "you need to eat your ice cream, see like me.  You can do it! Come on Molly, you need to eat it!!"   It melts my heart how much he loves his sisters.  She did eventually eat her ice cream, giggling at her brother the whole time, they really do have the best relationship.   She also still takes Naproxen twice daily, she takes that with no issues at all.  I don't even have to hold her, she sits on the counter and takes it willingly.  She's learning to cope and so are the rest of us.
 

Better Days

     I'm excited to report that this last week or so has been full of much better days!  Molly has been back to her normal funny, busy, happy self.  She's been keeping me on my toes and for that I'm grateful! She has been into everything, putting the cat food in the water bowl, playing in the toilet (gross, I know), digging out all of my ribbon and unrolling it, you know, the usual toddler antics.  God has definitely answered some prayers!  She's been eating better and she's back to feeding herself. She's learned to take her pants off and oh what fun that is...I guess she just be running around with no pants for a while. That is, as long as she leaves the diaper on...or maybe I should just potty train her, she asks to go.

     We had her first eye appointment on Wednesday. Her eyes looked great!! Praise the Lord! The eye doctor asked about all of her symptoms and when it started, based on all of that info he said it was unlikely her eyes would be affected (effected?). That's great news! Although, the possibility is there, so, she will continue to have eye appointments every 3 months for now, just to be sure.

    She did get her first injection at home on Tuesday. We all survived, LOL, and she doesn't hate me!! Ok, not that I thought she would, but it's hard to stick my little runt of a child with a needle.   We'll have to do it again in a few days...not looking forward to it, but she's definitely a resilient child.  I hope she's beginning to understand that we're not trying to be mean, just trying to ease the pain...we talk about it fairly often.

I am truly enjoying and cherishing these better days we've been having, we don't know when Hot TaMolly will have another arthritis flare up and we're due for another fever in a couple of weeks. So for now, we're cramming in lots of fun play dates, park days, the splash pad, maybe some strawberry picking, and hours in the sun.

The Rest of the Story

    Here is the rest of the story, at least until today.  Once we agreed that Molly may have a Periodic Fever Syndrome (PFS), then we brought her to her pediatrician each month so she could document each of her fevers.  On one occasion she had an ear infection and on another she had pneumonia even though she had no cough. A little over a month ago, on April 5th, we woke up early to go to our local farmers market. I picked Molly up, still asleep, and put clothes on her. Well, I noticed she wouldn't stand up, at all! I thought maybe her leg was asleep, so we loaded up in the car and went to the market. She rode in the wagon the whole time, but seemed to be ok. When we got home I tried to put her down and she just cried and cried. She still wouldn't stand up, I tried bribing her to walk to me and she wouldn't.  So, off to the wonderful ER we went.  When we got there her right knee was swollen and hot to the touch.  The physician's assistant that we saw thought it was probably an injury, the X-ray came back showing inflammation but no breaks or fractures. I asked about infection, he said he didn't think that was likely, that it was probably just an injury.  That was Saturday, by Monday she still wouldn't walk on it, although she would crawl on it. I took her to the pediatrician, who drew some lab work, her white cells were slightly elevated (so it wasn't leukemia, thank God!), her rheumatoid factor was negative (so we didn't think arthritis), and she was slightly anemic.  We were then referred to an orthopedic doctor.  We saw him on Friday, and as Molly likes to be different, her knee was no longer swollen, she had started walking again and seemed back to "normal". He did a hip x-ray and it came back clear. So, I was told it was probably just an injury and she was on the mend.
      The following Monday, I noticed she was limping again. I checked her knee was huge! I took a picture of it this time.  I called the orthopedic doctor Tuesday morning and went to see him that afternoon.  I showed him the picture and he took a look at her. Then he went and called our pediatrician, the ER doctor, and consulted with several other orthopedic doctors in the practice. Their consensus was that we needed to go to the ER to have her sedated to draw fluid off of her knee to check for infection.  Luckily, they didn't have to sedate her, but they weren't able to get any fluid off either, which was good and bad. It was good that it wasn't a septic joint which would have meant a transfer to Children's Hospital in Dallas for surgery and it was bad because there was still no answer as to what was going on with her.  I had been told numerous times at this point that she was "an unusual case". We joked that she had Molly Jordan Syndrome (MJ syndrome), she just likes to do things her way and be the 1 in a million!  I'll add that when we got to the ER that day, she had fever again.   We were told we need to see a pediatric rheumatologist.  We went home. I called our Pedi's office the next day and they got us a referral to see a rheumatologist at Children's Hospital in Dallas. 
       We went to see the rheumatologist on April 23.  We went through her medical history and by the end the doctor thought we were dealing with 2 separate issues, a PFS and juvenile arthritis.  :(  Not the answer I was hoping for but already had a feeling that's what it was. We were given quite a bit of information, they drew lab work to check inflammation and some other things, and blood for genetic testing (for the PFS).  We got a prescription for Naproxen to be given twice a day and instructions to call if anything changed. And the doctor referred us to Scottish Rite Hospital for Children, where they have a large juvenile arthritis clinic. Well...the next week Molly started waking up at night screaming pulling and tugging at her elbow. So I called to inform them.  Then over this past weekend around May 2, she got another fever, although it was a lot less severe and came down quicker. Then about May 4th she started waking up pulling on her ankle/foot.  I called to ask if I needed to take her to her pediatrician for the fever or just let them know so they could document it. Well then I got a call asking if we could be at Scottish Rite Hospital for Children the next day.
        So off we went, back to the Dallas area which is about 2 hours from where we live.  We saw the same rheumatologist that we saw at Children's. She said they wanted to put her on Methotrexate (which is an extremely low dose of chemo! eek!), I was thinking it would be another oral medicine.  Wrong!! Now I'll be giving my sweet baby an injection, at home, each week.  At least it's not daily.  And a dose of folic acid on the days she doesn't get an injection, which is a pill we have to crush and give her in some sort of food.  So far so good, but I haven't had to give her an injection yet. I'm really dreading that, but I'll do whatever it takes to help her feel better and lead a normal life.
         So for now, we think she has a form of juvenile arthritis and a periodic fever syndrome, which again is unusual. She doesn't like to follow the rule book, LOL! 

The Beginning

I'll just jump right in and tell you where our journey with Hotta Molly started. In August of 2013, about 3 weeks after moving into our new house our youngest, spunky little girl got a fever. She was a few days shy of 10 months old.  It was about 102-103, so I took her to the pediatrician. That was a Monday. The doctor told us her ears were good, her throat was good, and her lungs were good and it was likely just a virus. I've come to hate that phrase, "just a virus."  We went home with instructions that if she still had fever on Wednesday to bring her back to do a urinalysis.  After a restless night, Tuesday arrived and my mom came over to hold my sweet baby so I could pick up and clean some.  My sweet baby slept soundly on her Grammy. While I was putting some things away in the back of the house I heard my mom call my name...in a panic.  When I got to the living room my mom said she thought Molly was having a seizure. I dialed 911, she was definitely having a seizure. I felt completely helpless, scared, terrified....it was horrible. She changed colors, we couldn't really tell if she was breathing or not. The fire department took FOREVER to get there and the fire station is literally a block and a half from our new house.  That was my first ride in an ambulance...never again. She was barely coming around when we got to the hospital (the seizure had subsided before we left the house).  We were admitted to the hospital where we spent 6 days.  She had a high fever, 105+, but no other symptoms. They said her white blood cells were elevated, but it was likely due to the seizure. They ran lots of lab tests, I think we had a chest x-ray,and I'm not even sure what else. They found nothing wrong with her and we were sent home (still with 104 fever). We were told it was probably "just a virus." Yep, still hate that phrase.  That fever episode lasted 10 days, if I remember correctly. I was thankful it was gone and already dreading her getting a fever, scared to death of another seizure.
         Fast forward 1 month, nearly to the day. September of 2013. She got another fever.  I tried controlling it with Tylenol and Motrin with plans to visit the pediatrician on Monday. You know, kids never get sick when the office is open, they only get sick after 6 o'clock and on weekends.  I had a hard time getting her fever to go below 103 so my husband and I decided I should take her to the ER...just in case.  I loaded her up in the car and made it less than a mile down the road, she let out a really funny scream/cry so I turned on the lights and saw her starting to seize. Dang! I was really hoping it never happened again. Luckily our town is small enough that the hospital is only about 10 minutes away...I think I made it there in 5. They got us straight back to a room when we got there, the doctor checked her out and found nothing wrong with her, no ear infection, no strep throat, her lungs were clear...I was really hoping for something, they did give her a shot of antibiotic just in case.  We were released after a few hours with instructions to follow up with the pediatrician. I did ask about the Tylenol and Motrin dosages...evidently I wasn't giving her enough. :(  That was a horrible lesson to learn. Now I always have her correct dosage written on the bottle.  We followed up with a pediatrician (not ours, but another one in the practice) who said, once again, it was "probably just a virus" but gave her a second dose of antibiotic shot "just in case."  After 6 or 7 days her fever was gone and she was back to her happy, spunky self.
        Now, every 4-5 weeks since then she gets a high fever 105-106 that lasts 4-7 days.  It puts a stop on the whole household. My older children get somewhat neglected (don't worry they still get plenty of attention), we watch more TV and eat more "convenience" foods. Nearly every time we're told it's "probably just a virus".  This has been ongoing for 9 months now.  After about 4 months, I asked about Periodic Fever Syndromes and the pediatrician agreed that it may be that. Our plan of action was to document in her chart each time she got fever. I started a fever journal that documented the fevers and times/doses of Tylenol and Motrin that she got. I researched and googled it a lot, the problem I had was there was no cure, just management of the fever. That was not really what I was hoping for.

Come back tomorrow for the rest of the story. :)