Another Flare

We had another eventful weekend with Ms. Zoë. Thankfully, eventful in this case didn’t require an ER visit.

For the record, I’m going to start calling her fevers flares from now on. I truly, honestly believe we are dealing with an autoimmune issue.

She woke up with a slight fever Saturday morning. Nothing horrible…in fact, it barely registered as a fever based on what she normally gets to. However, by 1pm, she was on her way to high. She never made it above 104 though, so that was awesome. A dose of Motrin and lots of snuggles pretty much rounded out the day. Her eyes were pretty red-rimmed…in particular, the right eye. This is notable because some of the conditions I’ve been researching point out that pink-eye is a symptom. I never really thought about it, but her eyes have been red with every fever. Not to the point of pink-eye (and never with gunk), but you could tell she wasn’t feeling well by looking at her eyes.

Sunday morning, Dave has me check her because her leg looked red to him. I didn’t really see anything at that point, but to be fair, I didn’t give it the attention it really needed. And now I wish I had because she had a rash all over by Sunday evening. Now…she’s had a rash since all of this began in January, but when we saw the doctor, he said it was probably just eczema. And maybe it is. But the rash she had (has, still) is JUST like her eczema rash, only ridiculously horrible.

I actually took her to our family doctor on Monday to get it checked out and documented. They couldn’t do anything for her (I really didn’t expect them to) and just said it was likely a viral rash, but because of her on-going issues, they weren’t going to say that’s for-sure what it is.

Of course, that evening (because I couldn’t notice something like this WHILE WE WERE ALREADY AT THE DOCTOR’S OFFICE), I had to have Dave take a look at her eyes. Her right eye was now swollen. It makes me wonder if it wasn’t there before (the swelling was slight). That is a SIGNIFICANT signal that we’re looking at an autoimmune issue.

But we’re back to good. The rash is still there (hands, feet, arms, legs, cheeks, and stomach were all effected), but the fever only lasted 2 days. IF this goes as it has all year, we will probably see another flare in about 2 weeks. Time will only tell how it’s going to work out. I am working on attempting to actually talk to a human at our insurance company to see if they will cover a test that our doctor recommended. However, that’s proving to be extremely difficult. Hopefully, I’ll have an answer before we go back to the Infectious Diseases doctor at the end of this month.

I just want to know what’s going on. To have an action plan. IF I’m right and IF it’s an autoimmune disease, it’s going to be something we deal with, probably for life. I’d like to see if we can figure out her triggers or if there are any meds we can start her on to reduce her flares. I do like that we live in a time where I can also be researching. I printed out a huge chart that gives me a better understanding of what I need to be looking for, as far as symptoms go. I can only hope that it helps us get to an answer quicker.

~Kelley

Infectious Diseases (It sounds worse than it is)

Yesterday was our 2nd appointment at Cincinnati Children’s to (hopefully) figure out what is making Zoë have these recurring fevers. I went in with a list of questions and got most of them answered without me even having to ask. Which is great because it means that they are on top of it.

So here is a basic run-down of my notes from the meeting:

She looks good when she’s healthy, which is a great sign. It means that, even though these fevers are highly annoying, they are very likely not serious. No signs of cancer (Thank God!), although we may end up checking into that more thoroughly if we don’t get any answers in the future. But as of now, we can say that it’s not.

Possible causes:

Recurrent viral infections

Recurrent fever syndroms (PFAPA, etc.)

Rheumatological diseases

Primary immuno-deficiancies

But here is the problem…she doesn’t ‘fit’ any of those molds. No swollen lymph nodes, no swollen joints, no canker/mouth sores, no swollen eyes. She just has a fever.

So in an effort to collect all data, I’m in charge of keeping a fever journal for now. Dates, times of readings, temperature, etc.. I was pretty much doing this already, so it’s not much different. I think they are hoping a pattern emerges because that leads us to a fever syndrome and those are the best-case scenarios. And they will keep in touch with us until either the fevers cease or we find out what’s going on. Which makes me really happy….I’m just so used to being brushed off by doctors that it’s nice to have them actively pursuing our issue!

Zoë did have blood drawn and was a complete trooper. She didn’t cry and barely fussed, I was completely amazed. What a strong little girl! And the major benefit we have with having a MyChart account is that I got her results an hour later. Based on what I saw (and compared it to her last panel), she’s normal. No real signs of infection. Her doctor did call me this morning, but unfortunately, called at a time where I couldn’t answer the phone. I’m sure he will call back later, but I am also pretty sure he’s not going to tell me anything surprising.

We have the option to push for a more expensive test that may not be covered by our insurance. I’m a little nervous about the cost, but may go that route if the doctor suggests that we could benefit from it. I get a little apprehensive when a doctor says something is expensive and not always covered though…you never really know what they mean by expensive. And while we have really good insurance coverage and a healthy HSA account, I don’t know that I want to attempt to justify a significant cost if it’s not really worth it. So we will see how our doctor wants us to proceed.

This is all part of the answer to a question I asked though…what if we DON’T find the cause and she keeps having these fevers and seizures? And the answer is that we go fishing for answers. That’s when we start testing for cancers that we’ve ruled out and looking for the completely obscure illness that aren’t currently on our radar. But we will cross that bridge when we come to it. I’m still hopeful that we get some answers, even if it’s just that she’s highly susceptible to illnesses.

I will say that I feel significantly better. I have anxiety issues as it is and all I could think was that something was seriously wrong and we were going to get horrible news. So for them to say right off that they really didn’t think it was cancer and for her blood work to come back normal is amazing. Now we just wait and see what her MRI results bring. Hopefully, it’s more of the same good news!

~K~

Apparently, boundaries mean nothing…

So I’m frustrated…pissed off….hurt.

I know nothing is sacred online. But I’ve had to move my blog before because of bullies. And I just found out that it may again because it was shared without precautions being taken. Certain people have found my place and decided to infiltrate, even when they’ve been told that they are to stay away. So this is to them (to everyone else reading, I apologize):

You want to complain about not being in my kids’ lives? Maybe you should take a look in the mirror and explain to the people you are complaining to that it’s YOUR fault. You are not as pure and innocent as you seem. You’ve been asked and told to stay away from MY family. My kids don’t need you to be a martyr for them because we all know that’s what it is. It’s never truly about them, it’s about you.

My kids will be far better off with you out of their lives…why do you think WE made that decision? You need to respect the boundaries put into place. As far as I’m concerned, you don’t exist anymore. They don’t know who you are and they never will. This is because of YOUR actions and the way YOU deemed to treat me (their mother!).

We don’t need you and we never will. Believe it or not, we are doing fantastic. We’ve got a GREAT life….WITHOUT you in it. In fact, we’ve been so great without you. It’s fantastic.

This blog is for people who actually CARE about my kids…you have proven time and again that all you care about is yourself. Pity you, poor you. They’re horrible people, I never did anything wrong, they treated me bad, etc., etc., etc..

You posted something about how cutting toxic people out of your life isn’t bad but self preservation. Guess what lady? You’re toxic in a VERY big way. You’re a cancer we don’t want in our lives. And I feel sorry for the people who you have fooled. It’s only a matter of time before you turn on them and treat them the way you have treated me.

So it’s done. You’re out of our lives for a reason. Don’t post anything about my kids. Don’t talk about my kids. As far as you’re concerned, they don’t exist. Go away and stay away.

I see BRRAAAIINNNNSSS

Ok, so not really. But today was Zoë’s appointment with the neurologist. To be honest, I’m an obsessive researcher, so the appointment went about as I expected. Which is a good thing. The only surprises I like any more are gifts of camera equipment or chocolate. 😛

I was immediately impressed with the doctor when he walked in. He was great with Z, and truly understanding of the situation. We are so blessed to live where we do and to have the resources we have!

He thinks she is having focal onset seizures, which pretty much means that it’s localized in the brain…at least at the start. It’s not normal in febrile seizures (because we can’t have a simple diagnosis, oh no! She has to have complex febrile seizures), but it’s also not something we really need to be concerned with. The paralysis is slightly more concerning, but again….not majorly. We are being sent for an MRI (as I expected) just to ensure that there isn’t something going on that we aren’t aware of. Unfortunately, it’s not set up until October 28th. Another norm, I guess. I hate the waiting game, but I get it. So we won’t have those answers until Halloween time.

Dr. Arthur also set us up with a prescription for a medicine to give her when she has her next seizure (hopefully, never). Pretty much just to help her come out of it quickly. Seizures will still last 10-15 minutes most likely, but he’s hopeful they won’t go beyond that. And if they do, we need to get her checked out. We also have protocol in place to check her temperature every time a seizure happens, just to make sure they stay febrile and don’t deviate into something more.

Most children who have febrile seizures (usually occurring between 6 months and 6 years) apparently only have 5. We’re up to 3 (that we know of). So I have a feeling we’re going to be one of those unlucky ones that has more than the average bear. He also said something about kids only usually having fevers 1 or 2 times a year and I laughed. To be fair, Paige and Kira only get 1 or 2 a year…poor Z! The seizures won’t (shouldn’t?) cause any sort of brain damage and her chances of developing epilepsy is only at 2% (normal kids have a 1% chance).

Something I didn’t think about until I was filling out paperwork is that this child has always had issues with breathing/temperature control. She was the only one of my kids to be put back on a monitor right after birth. So it may just be that the part of her brain that’s supposed to keep her level isn’t as developed as it needs to be. And that would be just a waiting game for that to mature.

So as I said, I expected this. Right down to the order of an MRI. And I really felt comfortable with Doctor Arthur, I feel like Zoë is in good hands with him.

Now we wait again. Next week’s appointment will tell us more of what’s going on and what they are going to test for. Her blood work came back with a few high numbers and a few low numbers, so I’m interested in what direction that is going to take us. My mommy-gut says we’re looking at something autoimmune, especially since I have vitiligo. Apparently, that’s an autoimmune disease and it’s very likely that I’ve passed something down genetically. No, for the record, I’m not blaming myself. It is what it is, not like I ever asked for that! And I didn’t realize that it was considered an autoimmune disease until I started researching possibilities. But we still could be looking at a reoccurring infection and there’s still a tiny, tiny, TINY chance that it’s the “c” word. I’m preparing myself for any possible scenario.

I did sit Paige and Kira down today at lunch and kind of (in the simplest, least scary way) explained what was going on. More because I’ve been incredibly on edge with my anxiety running so high and they need to know that it’s not them. Although picking up their toys or doing their chore the FIRST TIME I ASKED FOR CRYING OUT LOUD would help out tremendously. But I think Paige at least understands that Zoë is sick and we’re going to try to find out why. Kira doesn’t get it….she’s 4, I don’t expect her to.

So that’s where we stand. Still praying and crossing my fingers that we find out what’s going on and that it’s something easily treated.

~Kelley

When the poop hits the fan

I’m resurrecting my blog due to needing to keep people updated. Our youngest daughter (Zoë) is 18 months old. Since January, she’s had recurring high fevers. This past weekend put us up to 9. They hit quickly and they hit HARD. One minute, she’s fine and the next minute she’s almost 105.

In May, she had a febrile seizure. As far as we know, it was the first….but we don’t know for sure. She had another one this past weekend, quite possibly 2. Her seizures are absent, so it’s difficult sometimes to tell if she’s just tired or if she’s actually seizing. Saturday morning’s seizure was terrifying. When she started coming out of it, her entire left side was limp and unresponsive. We took her to the ER where they tentatively diagnosed her with Todd’s Paralysis and a febrile seizure. Thankfully, it was short lived (a few hours) and she was walking before we left the hospital. We also left with instructions to set up an appointment with the neurologist.

Monday morning, I called and set up our neurology appointment and called our family doctor to get her in. Until Monday, I never felt like I was being taken seriously when I brought her in. I was always told to give her meds, so her fevers were never high in office. Our appointment was at 230. At 1030, I dosed her with Motrin because she was over 102 and gave her a bath. Once I got her out of the bath and dressed, she was visibly shaking and her extremities were bluish. Took her temp and it had fallen all the way to 96..this child! Don’t worry, an hour later she was back to 102. And then we went to the doctor….they got us back right at the time of our appointment and took her temp. It had climbed to 104.3. FINALLY. I HATE that my baby was feeling so terribly, but they took me seriously! We discussed our options and then got sent to Cincinnati Children’s to have her blood drawn.

Her results have finally come back and because of them, we are now referred to an Infectious Disease Specialist. We see her a week from tomorrow. Unfortunately, the results really don’t tell us anything right now. It could be a virus, an infection, autoimmune, or even cancer. Or it could be nothing and is something she will outgrow in time. We really don’t know at this point.

Not going to lie and say I’m not freaking out. My gut does say that it’s not cancer, but I’m trying really hard to not think about the what ifs. And right now, I don’t really know where to even start to look for answers. We’re in a holding pattern until we talk to the neurologist and the specialist. I’m praying it’s nothing, but preparing for the worst.

~kelley

Oh, the places you’ll go…

It’s no secret…I love to travel.

Last year, we visited Utah (and hit 3 National Parks doing so), spent a week on the beach in North Carolina, and traveled to Europe (sans kids).

We like to travel.

I want the kids to see as much as they can and instill a love to various places in them.

This coming year? We have more traveling planned. A week in Colorado (primarily Denver/Colorado Springs area) for a wedding. A long weekend (sans kids! {hopefully}) at Snowbird in Salt Lake City. A cruise through the Caribbean with Disney. I’m hoping we can get a trip to Washington DC at some point as well. And it won’t happen, but I would love to go back to Germany.

That last trip may be a few more years off, but one can dream, right? (ah, Munich! I miss you!)

I firmly believe that life is meant to be lived, that schooling doesn’t happen just in a classroom.

I want to take the girls to Europe. I would love to visit every state in the USA. And in time, I’m sure we will make it happen.

I’m impatient though :-P.

Where do you love to travel? DO you love to travel? Anyone know of anyone needing someone to help spread the word regarding their resort, because that would be AMAZING. Hook a girl up!

~Kelley

Months like this…

…are why I particularly love that we homeschool.

I’d love to say it’s because everything is clicking and going fantastically. However, that would be a complete and total lie.

Right after the New Year, ALL of us caught the flu. I’m not talking we were slightly ill. Kind of wish we had been tested (still a little annoyed), but am pretty sure we had the real deal. It. Was. Bad.

And then this week, we were “blessed” with the stomach virus going around. Ugh.

However, I didn’t have to worry about contacting a school or worrying about falling behind.

And I didn’t have to deal with getting a child to school in the morning after her sister and I had been up all night.

This particular benefit to homeschooling is pretty awesome.

(Now praying that since we’ve caught the big two illnesses this year, we will be healthy!)

~Kelley

Lifestyle Changes

It’s no secret, I’ve had a serious weight problem for the vast majority of my life. I’ve never been a “little” over-weight. I’ve always been the fat friend.

Genetically, I lost that lottery. It is what it is. And I’ll probably never have a bikini body. I doubt I’d ever be comfortable showing that much skin anyway (I’m a bit conservative). But I want to be able to shop in a normal store. THAT is my ultimate goal.

I was doing great and then life happened and I’ve gained back about 15 pounds since October. Yeah, I wasn’t happy when I saw that on the scale. But I can see it in the bloat in my face and my hands.

So I’m back at it. I work out 4 or 5 days a week (at least 2 of them with a good amount of weight training). I’m tracking everything I eat in myfitnesspal.

I have a goal to be 62 pounds lighter (there’s a reason for that number) by the time we go on our cruise in late November. I honestly don’t expect to make that. And maybe that’s me shooting myself in my foot, but I spent 6 months stuck at one weight. Ugh! It may not happen in the time span I have set for myself. It may not happen in a year. But it’s going to happen.

I want the girls to know how to eat properly. How to take care of themselves. How to not end up hating their bodies.

I hate change. I definitely crave all of the “bad” things for me (French fries! Chocolate! Chips!) and I know it will take a time to get those cravings to go away. I know I need to try new things, but that’s hard. For instance, I see people using vegetables and things like spaghetti squash in place of noodles, but I’m worried that I’m going to hate it. Change. Yuck. You can call my Sheldon in this instance (kudos if you know my favorite show).

It’s not a diet. That’s what I keep telling myself. For this to work, this is a family lifestyle change.

Check back periodically and help me make this change. Heaven knows I need all the help I can get!

 

~Kelley

Homeschooling the ADHD Child

I do not have all of the answers.

In fact, I’d be hard-pressed to say that I have even 25% of the answers.

We’re just starting this journey after all.

I’ve mentioned Paige and the challenges we have with her in the past. She’s 6 and ridiculously active. Constantly needing something to occupy her attention. And if what I want her to do doesn’t fall in her wheel-house, her attention span is approximately 30 seconds.

But here’s what I’ve found.

Paige can do work well above her years…IF SHE CAN VERBALIZE IT. So things like writing? Long math worksheets? Those just don’t work.

It will take her an hour to do 2 pages of work if I require her to write the answers herself. With me writing her answers? 5 minutes. We can get through 1/2 of one of her workbooks (about 25 pages) in about 30-45 minutes.

I know there are quite a few people that believe that what I do is cheating. I know that writing is necessary (and she does still do some writing, just not as much as perhaps some of her peers), but not at 6. 10? Definitely.

She loves reading, but has to read out loud. Math is easy and she picks it up quickly, but more than 5 or 6 problems and she’s drawing on her paper.

Work is rarely done at the table or her desk. A wiggle chair helps, but isn’t enough. So most of the time, she’s rolling around on the couch. Or running circles in the living room.

If the material we are working on isn’t challenging, forget about it. I actually picked up a 3rd grade workbook to ‘test’ her at Costco the other day and other than a few concepts we’ve never gone over, she was getting it. I have a feeling I’ll be ordering both 3rd and 4th grade when I order her Language Arts and History curriculum. Not exactly a cheap proposition, but we will use it anyway, so might as well (especially since it’s going to be 20% off and give me bonus points {join Homeschool Buyers’ Co-op!! It’s free!} on the 31st of this month).

With Paige, I feel like I have to be constantly ‘on’. I can’t just skate by as a teacher. I have to constantly figure out how to help her learn. How to make things more hands-on.

Honestly…it’s exhausting.

And then there’s the social aspect. The child knows no strangers. She doesn’t understand most boundaries. Things like hugging and telling someone you just met that you love them isn’t always the best idea. Teaching that she shouldn’t be doing that feels wrong. This world could use a little more love, you know? But people get the wrong impression and quite frankly, it’s scary how much trouble she could get in these days. Hands off, no touching…yadda yadda yadda.

So now I’m curious. If you’re reading this, how do you homeschool? How do you deal with a highly distracted child? How do you keep learning interesting?

I’m sure we will be changing many times throughout our journey. Sure that what we do this week likely won’t work next week. But it’s still better than many other alternatives.

 

~Kelley

Dilemmas

Some days are good, some are bad, some are happy, some are sad, and some are just ridiculously over the top frustrating you don’t know what in the world to do next.

Last week seemed to be filled with days described last.

So frustrating.

Barely any school got finished and what did get done, was usually done with yelling and tears. Honest to God, you would’ve thought I was telling Paige that I was forcing her to write a 10000 page report, instead of a few simple workbook pages. Heaven forbid that math get done (we are now behind where I’d like to be by about 8 lessons *sigh*).

Zoe has been insisting that she needs to be the center of attention, so that has been a hindrance. She’s at that age where everything within grasp is worthy of going directly into her mouth. And no matter how many safe things you give her, she’s going after everything else. Pencils, yarn, crayons, paper, hair…

It’s funny, my most difficult child was actually the best. I guess the yelling did have one child paying attention.

Except, I don’t want to be that mom that’s constantly yelling.

Nor do I want school work to be such a battle that the girls end up hating learning.

I’ve made Paige’s lessons short. If she actually does the work in a timely manner, she can be done in about 2 hours (and I don’t mind her breaking it up, just as long as it gets done). And in fact, those are only the days that I have to do her science with her. The other two days should take about 1 to 1.5 hours.

But what actually happens is that she struggles to stay on task and school can take all day (and often ends up running over to the next day). I have us on a 4 day a week schedule, so that’s usually not a big deal. Unfortunately, we’ve had a few busy weeks in a row and now I feel like we’re rushing to catch-up before I ship them off to Camp Oma’s House for 10 days.

I get SO annoyed when she just can’t do her lessons. It just kills me to see her screw around and miss questions when I KNOW she knows the material.

And maybe that’s the issue. I feel like she needs to go through what I’ve (we’ve) picked out for this year and I’m hesitant to push her ahead another year, but I’m also wondering if she isn’t just ridiculously bored because she either knows the material already or is picking it up so quickly that she needs to be challenged more.

When I sit and enter her math in for her (she’s usually dancing around the kitchen), she gets 95% of the questions correct. When I make her do it herself, that drops to 80% or even lower.

PART OF THE REASON I CHOSE THE MATH THAT I DID WAS SO I DIDN’T HAVE TO SIT WITH HER TO DO IT! Trying to work on a computer with a 7 month old is a fruitless endeavor.

I’d do it during Zoe & Kira’s nap, but Paige still needs that time to lay down and quite frankly, I need that break from the kids.

How do you judge what level your child needs to be in?

How do you know when it’s time to just give up on your plans?

What would you do in this situation?

Honestly, as frustrated as I can get, I’m happy I can homeschool her because I can only imagine the amount of trouble she would be in on a daily basis. Her school is never done while sitting, she’s either standing or laying down and CONSTANTLY moving. And we have a saying in our house “in goes air, out goes noise”. Paige has to be constantly talking or singing.

I’ve read threads about what others do, I’ve tried different approaches…I just don’t know where to go from here.

I also want to respect wishes about how my husband wants her to be schooled (which means no unschooling or montessori methods).

I know it will get easier as the younger ones get older and can entertain themselves (well, when Zoe gets older. Kira is surprisingly independent and will join us and do some of her books or read and play by herself all day), but I don’t want Paige to suffer in the meantime.

I want school to be fun, I want her to WANT to learn. I wish I knew what I needed to do to accomplish this.