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.