Please Help Us Find a CURE For JDM in 2014

Elia Holiday RecitalWe are very fortunate. Lucky even. We often say that we have so much to be thankful for because we have a very healthy sick child. Elia appears to be like every other 2-year-old. She loves to sing, dance, run, blow bubbles, and her favorite color changes with the time of day. When people meet her they often comment on her outgoing and funny personality. In her mind, every song deserves a boogie (or two), every flower deserves a ‘niff, and every outfit needs proper accessories. Her, and her little brother Zavier, add so much happiness to our days.

And somehow, at just 2-years-old, she manages to be all these things while fighting a battle that we can’t relate to or understand. Elia was diagnosed on May 22, 2013 at 22 months with Juvenile Dermatomyositis (JDM). It’s an extremely rare autoimmune disease that affects about three in every one million children per year. How rare is that?

Imagine if 15 professional football stadiums were filled to capacity and three lucky fans were picked at random out of everyone in attendance to win a big prize. Terrible odds, right? Might as well head to the concessions and forget the whole thing. Totally agree. Except, we did “win.” Our name was called and we didn’t want the prize. Want to hear what we won?

Since there’s no cure YET, we won a lifetime supply of:

  • A super immune system that doesn’t know when to stop fighting and turns on itself attacking her skin, muscles, and potentially every other system in her body.
  • Dangerous sun sensitivity, which requires constant use of sunscreen, hats, and protective clothing.
  • Medications that are harsh, unpredictable, and cause other side affects that go beyond the disease itself.
  • IVs, infusions, blood work, MRIs, strength tests, swallow tests, school and work absences, hospital stays, and fear and isolation during cold and flu season.

Some prize, huh?

Fortunately, Elia is doing great. She’s responding well to the medication and her doctors believe that she is well on her way to remission. We’re steadily decreasing her dosages and her infusions have decreased from once a week to once a month. If all continues in a positive manner we’re hoping that her treatment will be a total of two years from diagnosis. In the grand scheme of things that’s pretty fantastic. We know how lucky we would be if that really was the outcome. Most JDM patients are in treatment for a minimum of 4-6 years. And sadly some will always be undergoing treatment.

The thought of eliminating the medications and treatments, mood swings, changes in appetite, and energy fluctuations is the light at the end of a very long and winding tunnel. We’re hoping she enters remission and all of these things will become a distant memory for her, and that because of her age, she’ll only “sorta” remember.

Even though our best-case scenario will be a much different life than we have right now we’ll still be fighting the fight to keep her from having a flare and returning to an active stage of the disease. For her to remain in remission we’ll need to avoid her triggers which are thought to be sun exposure, viruses, and stress. In theory, if we can minimize the triggers we minimize her risk. Easy enough, right? I mean, what are the chances of her being exposed to the sun, germs, or stress?

So, even in remission, we will:

  • Apply sunscreen throughout the day (every day)–even when we’re inside.
  • Avoid the peak sun times and monitor the UV Index on a daily and even hourly basis.
  • Wear hats and protective clothing if we have to be out during high-risk times.
  • Do our best to avoid germs by washing our hands, sanitizing surfaces, and avoiding contact with those who may be contagious.
  • Learn to manage stress in a healthy way. Yes, even at two years old. And yes, this is a work in progress.

Believe me, we understand how wonderful it would be for her to be in remission. And, trust me when I say we won’t take it for granted, not even for a second. But, we’ll admit we’re still sad for her. When we think back to our childhood we remember long days at the park, swimming, and playing sports like softball, tennis and soccer. While these things are not impossible they will have to be much more calculated and will lack the innocent spontaneity that should accompany childhood memories. Even the well planned family vacations will now be scheduled according to risk rather than typical school and work schedules.

There are so many things that we now have to consider that never crossed our minds just months ago. It’s amazing how life changes in the blink of an eye. For instance, our next home will be selected based on the available shade in the yard, the placement of the windows in her bedroom and throughout the house, and will be one level in the event she experiences muscle weakness or deterioration. When she starts school we’ll need to make sure her desk isn’t too close to the windows in her classroom, that she and her teacher understand the importance of proper sunscreen application, and that we’re made aware of any viruses affecting the students.

As for now, we’re sad for the day when the neighborhood children ask if she wants to come out and play and we have to calculate the risk, take precaution, monitor the clock and bring her back in before she’s ready. We know this day is coming because we spend at least a day or two a week consoling her as she peeks out the window watching the other kids play. It breaks our hearts and we don’t even know how to begin to explain it to her.

So, even though she “looks” healthy and she’s heading in the right direction we’re not stopping until there’s a CURE.

In fact…

Until there’s a CURE, we’ll be raising awareness by sharing our story.

Elia Childrens Mercy

Until there’s a CURE, we’ll be raising funds, one dollar at a time, until the research can be done.

Elia Blood Pressure

Until there’s a CURE, we’ll move mountains to help Elia reclaim her childhood and make sure no other child is diagnosed with JDM.

infusion for JDM

Until there’s a CURE, we’ll be here—we’re not going anywhere. Join us, will you?

Here’s how you can help:

CureJM is in a contest with 700 charities to raise the most money by January 9th. We’re currently in 1st place, but quickly losing our large margin. If we win we’ll get another $100,000 to add to what we’ve already collected. Winning this money would allow CureJM to fund critical research and get closer to a CURE! Can you help by making a donation? Every dollar helps, can you spare a few?

Fundraising Websites – Crowdrise

Celebrate 2014 WITH us!

Due to Elia’s treatment schedule we celebrated New Year’s at Noon at the infusion center at Children’s Mercy Hospital. Fox4 News-Kansas City joined us and several local JM families for the celebration. If you missed it you can watch it in its entirety HERE. We hope you’ll watch and learn more about our cause and help us say so long to 2013 and welcome the NEW year!

We appreciate all of your support and encouragement during this whole experience.

We wish you all a happy and healthy 2014!

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Posted in Elia, Family Updates, Fundraising, JDM, Juvenile Dermatomyositis | Tagged , , , , , , , | 2 Comments

Choosing The Best Stroller For Your Family

Stroller

Let’s get one thing straight. Choosing a stroller is no walk in the park. It’s a headache-inducing-overwhelming-pain-in-the-pants.

The other day I posted a question on my personal Facebook page asking advice, opinions, and reviews of double strollers. We’ve just begun to dip our toes in the market and wanted to know what our friends loved and hated about theirs. I was blown away by the responses. It seems that the baby-hauling-industry is a complex one. In fact, I’ve seen less thought out, researched and passionate debates on other seemingly important topics like healthcare and national security.

So what’s the big deal anyway? Strollers are nothing more than a patch of canvas on wheels used to get the munchkins from point A to B with the least amount of meltdowns. Right? WRONG.

The stroller consumer now has to decide if they want their kiddos to sit side-by-side (“Mom, HE’S touching ME!”) or in a single file line (“Mom, SHE’S kicking ME!”). Not to mention, the number of wheels (3 or 4). Plastic stroller wheels or rubber tires? Will the front wheel turn or stay stationary? Lightweight or heavy-duty? Does it fit through a standard door? And on, and on, and on.

“Sorry kids. We can’t go for a walk because Mommy’s STILL researching strollers.”

When it gets down to the nitty-gritty, it’s a personal choice. What may work for your family may not for mine. So, make a list of your needs and wants and then decide what activities you’ll be using it for most of the time. Here’s our wish list:

  1. Sun protection — It MUST have large canopies to help protect our kiddos from the sun. Elia’s health is dependent on this feature so it’s non-negotiable. And, really, who DOESN’T want to protect their kids from the sun? 
  2. Size/width – It MUST fit through a standard door because, “ain’t nobody got time for that.”
  3. Comfortable ride.
  4. Easy to open and fold up.
  5. Oh, and, we’d prefer it not cost us a gazillion dollars.

Right now, we’re leaning towards a side-by-side because of a few comments about the backseat rider getting the shaft when it comes to the view. As the youngest child I ALWAYS had to sit in the backseat of the car so I can totally relate.

We have a front-runner based on our friends reviews and hope to check them out in person soon. According to our friends that have them the strollers by Baby Jogger have hit 1, 2, 3, and 4 on our list. By most baby-gear standards they’re a bit expensive. BUT, in the luxury stroller category, they’re actually reasonably priced. If you compare the prices, to say, an umbrella stroller, you’ll most likely fall over dead. We’re trying to keep that in mind.

Next Steps

We haven’t picked the exact model and need to study the comparison chart to figure out which one works the best for us. And then, hopefully, we can get to a store that carries them and take them for a quick but focused spin to get a feel for each one and their intricacies. Regardless of what we decide, we’ll make sure to post an update and maybe it will help the next overwhelmed and over tired mom (or dad) make an easier pick.

Have you already passed this stage and are tooling around town with an amazing stroller? We’d love to know why it’s so fabulous!

Disclosure: This post was prompted by a genuine need for stroller research. Team Ibrahim was in no way compensated for this post or the information contained within. However, if Baby Jogger would like to send us a double stroller to test and review we’d be happy ecstatic to oblige. 

Stroller image via Baby Jogger website.

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Posted in Baby Gear, JDM, Juvenile Dermatomyositis, Product Reviews | Tagged , , , , , , , , , , , | Leave a comment

Family Updates and Mad Dance Skills

BigSisLilBroIt’s been awhile. Thanks for sticking around.

First of all, I’d like to thank all of you that have left comments, emailed, texted, and posted on our Facebook pages. Every ounce of support has been appreciated and has been    invaluable when it comes to our attempt to approach each day with positivity (even though some days it’s really, really, really hard).

Our last few weeks have been filled with doctor appointments, home health visits, fireworks, birthday parties, milestones, and visits from family. And, we have some good news about Elia’s health–we’ll get to that too.

Baby Zavi (Zavier) is growing like crazy. He’ll be FOUR months old on the 26th of July. He’s developing quite the personality and is voicing his opinions more often. We were surprised to watch him roll from his belly to his back and then back the other day (the 10th). Now it’s not uncommon to watch him “log roll” all over his crib. I’m not sure I’m ready for him to be on the go!

Zaviers First Swim

We spent the 4th of July with family–and it was so much fun. Sure, we had to make some changes to what we would have normally done but it was a fantastic day nonetheless. We hung out at home during the day and lounged around (it was a holiday after all). Once the kids woke up from their naps and the sun backed off a bit we headed down to my hometown for an evening BBQ at my sister’s house. Elia had a wonderful time playing with the ‘big girls,’ lit a few smoke bombs, and jumped on the trampoline. We celebrated several birthdays and Zavier met some new friends and family. There was also a BIG surprise and engagement announcement which made us ALL happy. Congratulations, Lori and Lyle!

4th of July Zavi4th

Elia turned 2 on July 6th. We celebrated with a few of her friends a week early. She had such a good time playing with some of the sweetest kids on the planet–so happy we were able to make it happen.

2ndBirthdayParty

We were pleasantly surprised to wake up on her actual birthday to cloudy skies. Yes, CLOUDY SKIES! We jumped up, packed up the kids and the car and headed back to my hometown to make it the best 2nd birthday possible. We called our go-to photog Casie and she cleared a little time to meet us at the park for a quick 2 year photo shoot. Even though the 30 minutes flew by (the amount of time we were comfortable having her outside) it was so fun to watch Elia play (still rockin’ her hat and spf, of course). Then we had lunch and managed to get in her first swim of the summer. I can’t say it enough, it was the.perfect.day. It was therapeutic for all of us.

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The last few weeks have proved to us that we can still live. We can still participate in the world around us. And, we can still enjoy outdoor events and activities–we just have to do them a little different than most…and, that’s okay.

Pure Joy

Last but certainly not least–Elia’s health. I suck at dramatic lead-ins so I’ll just get right to the point. She is doing amazing. Seriously, we couldn’t be happier–(LIE. We’d be happier if she didn’t have JDM–but it is what it is).

She’s been doing great with her daily medications (oral steroids, calcium, vitamin D, Zantac, and folic acid). She also gets a big dose of steroids and a dose of methotrexate via her port once a week. We’re so lucky to have an amazing nurse that comes to our home each week to administer them. The visits last just a couple of hours and Elia doesn’t seem to mind much. I will say that shortly after the nurse leaves, and the medicine has had time to kick in, Elia seems to get a huge burst of nervous energy from the steroids that lasts a couple of days–pair this with the normal toddler energy and we have what we like to call “The Perfect Storm.” It mostly appears in the form of clingy-whinybutt-itis. BUT, considering the amount of drugs her little body is trying to process we give her a free pass for a couple of days.

EliaInfusion

We met with Elia’s Rheumatologist on Friday (7/12) and have some fantastic news and an update to her diagnosis. Here goes.

Lab-work

ALL of her labs are or are approaching normal. Her white blood cell count is still slightly elevated but her doc wasn’t worried as she’s attributing it to her steroids.

Rash-Her first sign of the disease.

Her rash is almost gone which is another sign that the medicine is doing what it is supposed to and her body is responding well. She’ll most likely have the discoloration/loss of pigment from the rash for awhile yet but I can definitely attest to the fact that the rash no longer looks ‘angry’–a huge victory.

A change in her diagnosis.

The doctor explained to us that she had a second team of radiologists review her MRI from her hospital visit on May 28th. She said that this 2nd review found a small amount of muscle inflammation in her upper thigh. Because we now have visible proof that the disease has affected her muscles we lose the “amyopathic” descriptor (which means, without the muscles) and Elia is officially straight-up Juvenile Dermatomyositis. Shortly after the huge pit developed in my gut and just before the tears were about to roll–the doctor said something that made it all better. She said that she actually prefers a diagnosis of just plain ‘ole JDM rather than the amyopathic variety. Why? Because JDM itself is rare but they know so much more about it compared to the amyopathic strand. In other words, it’s easier to predict and treat JDM than the other. So…yay? Please don’t misinterpret my reaction as ungrateful. My point is, I never thought I would be happy that the disease was also affecting her muscles and at that very point in time it was hard to process. The good news is that the small and teeny muscle inflammation is just that…so teeny that there were two teams of radiologists that were on the fence to whether or not it even existed. Bottom line is, it’s there, it’s minimal, and completely reversible leaving zero ‘damage.’ And, THAT, my friends, is FABULOUS NEWS!

Where do we go from here?

The doctor is SO pleased with her progress that we’ll be changing her weekly infusions to every other week. This makes us so happy but a bit nervous. Until we know how her body and the disease will react to the down dose we don’t know if she’ll have another flare and see the activity of the disease increase on the off week. It’s a wait-and-see sorta thing which makes us very, very nervous. Thankfully, our team of docs are monitoring her very close with blood work and visits so we’ll know right away if something isn’t going as it should. She’ll do the infusions every other week for two months and assuming all goes well she’ll then go to once every three weeks for two months, and then once a month, and then…none (hopefully).

Her methotrexate dose will increase a bit and will now be given once a week in the form of an injection by nurse Mommy instead of by a trained professional. Thank goodness I have years of giving myself injections for IVF cycles to fall back on. Although, I will say, giving my sweet baby an injection will be much much harder.

All of her other meds will stay the same. They’re basically supplements and preventive care.

So long story…still long, sorry about that–Elia is doing great. We’re making progress and learning as much as we can about juvenile dermatomyositis and how to keep her as safe and as healthy as possible. We are discussing getting involved in some fundraising efforts this fall and we’ll post more on that very soon.

Life has kept us pretty busy so I’m not able to update as often as I’d like. But, I promise that if anything changes significantly I’ll let you all know. I guess the ‘no news is good news’ applies here. On a happy note, most days Elia seems like every other 2-year-old and for that we’re very thankful. Want proof?

Exhibit A

Sorry about the audio, the little man was sleeping so I couldn’t turn up the volume much. Basically, she’s “rollin’ the dough,” “spreadin’ the sauce,” and tossin’ the pie.”

’till next time!

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Posted in Elia, Family Updates, JDM, Juvenile Dermatomyositis, Zavier | Tagged , , , , , , , , , , , , | 1 Comment

So Thankful: An Update on Elia

Elia-after-1st-infusion

Two weeks ago today we took Elia to the pediatric dermatologist and everything changed. That is, everything except our sweet, beautiful, brave Elia. Since being diagnosed with Juvenile Dermatomyositis (JDM) she has been poked, cut, examined, starved, medicated and put through things I’m not even sure I could take and she has handled all of it with grace and strength. She continues to amaze us on how brave and ‘big’ she can be.

I’ll pick up where we left off with our last post.

Our stay at Children’s Mercy.

Monday (5/27/13) we checked in at Children’s Mercy for a three-day stay. I’ll say that our drive to the hospital was so incredibly tough. I’m not even sure Zameer or I said a word. We sat there in silence as she sat in the second row of our minivan watching a movie. She was singing and dancing and was as happy as she has always been. I can’t say for sure what Zameer was thinking but I know that I was thinking that here we were taking our (what appeared to be) happy healthy daughter to the hospital and she had no idea what was about to happen. We knew that the next few days would be uncomfortable for her and that she would have massive amounts of medicine pumped through her tiny little 24 pound body. We could only hope and pray that we were doing the right thing and that she’d forgive us.

When we arrived at the hospital she had no fears because she’d not only never been to the hospital as a patient but had never even been sick. The hospital was decorated with bright colors and animals on the wall and she probably imagined that we would be having a fun day. Unfortunately for all of us that was not the case.

Elia's-Initial-Exam

Elia’s doctor checking out her rash and doing an initial exam. Elia brought her doctor kit just in case she was needed.

She had her IV placed on the first day and was such a brave girl. She only cried during the initial poke and then watched closely to make sure that they were doing it correctly. Once her IV was placed they did her first steroid infusion and she did so well. It didn’t seem to bother her at all as she just sat on my lap and watched a movie on her iPad. The infusion only lasted about 45 minutes. After that was done she was free to play with all of the toys that they brought her but was confined to her room throughout her stay to minimize contact with germs.

The first night was tough as the steroids give her a boost of energy and she was exhausted but couldn’t physically slow her body down long enough to fall asleep. Our little girl was dialed up a few notches and the only thing that would calm her down was us holding her and pacing in our little room attached to her IV pole. So, her daddy and I took turns holding her and walked the room over and over all night long. She finally fell asleep about 6 am only to be woken up around 7:30 for vitals.

Elia-and-Daddy

Finally asleep after a tough night.

To add to her frustration she couldn’t eat or drink after 1 am for her procedures that weren’t scheduled until 2 pm. Trying to explain to a 2-year-old that she can’t eat or drink (sorry baby, no gilk) is nearly impossible. She was so sad and would take her tiny hands to our face and say “gilk” with her big brown eyes and we had to say no. Heartbreaking times a million. She was taken down to surgery at about 1:30 pm and we were glad that we were moving along and maybe getting in a bit early. As nervous as we were for her to be sedated we knew that it had to be done and she would be that much closer to getting to be with us and eat and drink. She was scheduled to have an MRI and have her port placed and both required sedation.

Elia-on-the-way-to-surgery

Heading down to surgery. Such a brave girl.

At the very last minute and due to a crazy situation with an allergy of mine (would she have it too?) we almost had to delay the procedure another day or two. After consulting with an allergist and immunologist we all felt comfortable moving along as planned and were only delayed an hour. She did great with both procedures and was wheeled back up to her room about 2 and half hours later and greeted us both with hugs and kisses. We were so happy that we were able to give her some milk and it wasn’t long until she was up running around and working on her puzzles.

Post-Surgery-Puzzles

Post surgery: finally some milk and time to play!

That night she had her second steroid infusion and her first dose of methotrexate via her port. The methotrexate process scared me a bit more than I had imagined. After watching the nurses take extreme precaution administering the drug I noticed that it seemed so much more intense compared to her other medications. I know that it’s a low dose cancer drug and have even had to have a dose myself after delivering Elia and struggling with retained placenta. BUT, I had to ask…why was this so different? The nurse told us that if they were exposed or if it touched their skin it could have harmful side effects. That’s when I broke down. They were afraid of a drop of it touching their skin and here we were pumping it in to our 23 month old daughter with a plan of doing it long-term. The nurse tried her best to assure me that her body needs it to get on the road to remission. All I could think of again was…”I hope she can forgive us.”

Because of the day that she had and the fact that her steroids may have kept her up all night again we opted to give her something to help her sleep as she needed the rest more than anything else.

Day three (our last day) had another frustrating start as she couldn’t eat or drink in order to prepare for another test. We first thought the test would be at 8 am which would have been wonderful, then told 9 am which wasn’t awful…unfortunately it didn’t happen until 1:30. Another day of no food and no gilk. Poor baby.

Patiently-waiting

Patiently waiting for her last test but tired, hungry, and ready to go home.

More-Tests

Finally! Let’s get this show on the road!

After her test she did her last steroid infusion for the week, had a little lunch, and took a nap. She was finally allowed to leave the room for more than a procedure and rode a tricycle around the floor. I’m pretty sure we made 20 laps and neither her daddy or I may ever walk upright again.

Easy-Rider

Killing time waiting to be dismissed. Beep beep!

We then worked with her coordinator to set up home health for her weekly infusions, an occupational therapist on some possible therapies, and were finally dismissed with a stack of papers and a huge bag of medicines and supplies. Our heads were swimming our eyes were glazed and we were exhausted…but we were heading home. And we knew that’s exactly where we needed to be.

Heading-Home

Ready to go home!

The results are in.

Her MRI showed NO, ZERO, ZIP muscle damage (cue music and happy dance). This means that the disease has not affected her muscles (yet). It means that the rash was the first sign of the disease. We are so, so, so relieved. With this disease the rash can appear before, at the same time, or after the muscles have suffered damage. Some children go years with the muscles becoming weaker and weaker before the rash appears. It looks like we caught it early enough that we may be able to avoid any serious damage. Elia will be monitored closely going forward so it’s not to say the disease won’t affect her muscles but with monitoring visits we should know before significant damage and weakness takes place. Huge sigh of relief.

We decided to go with a port for her infusions to avoid weekly IVs. Even though she doesn’t appear to have any muscle damage her rash was pretty significant and it will still take an aggressive treatment plan to get her into remission. Hopefully the worst is over in regards to the port and it will prove to be the easier method for her.

The labs that we have received back have all improved since her initial labs with the dermatologist. There was only one enzyme (liver enzyme) that was elevated but it was minimal and had decreased significantly since her first lab work.

Overall, her team of doctors are very pleased with her results, as are we. We may be looking at a diagnoses of Amyopathic Dermatomyositis (ADM). ADM is an even rarer form of JDM in which the child has the skin rash but not the muscle weakness. ADM is SO rare that there isn’t much research or information. It’s tough to diagnose, especially this early, because the muscle weakness may just not have appeared yet. So, as of now, they’re looking at ADM but if the muscle weakness appears her diagnosis would change back to JDM.

We were told that ADM is tough too and that we aren’t ‘out of the woods’ yet. But, we’re taking the fact that we caught it early and that she doesn’t have any muscle damage as huge wins and trying to be positive. And, right now…that’s a BIG deal.

Now what?

She’s home and seems fairly comfortable. She takes several medications daily (Vit D, Calcium, Folic Acid, Zantac, Prednisone, and Protopic-a topical cream for her rash). She’ll have her steroid and methotrexate infusions once a week for awhile until they start to down dose. We’re going to Children’s Mercy on Monday for her infusions and then going forward we’re hoping she’ll start doing them at home with a pediatric nurse. The duration of her treatment is still unknown.

We also found out that she can play outside (and even in summer clothes) as long as she is properly sun screened, wearing a hat, and she avoids peak sun times. She has to wait three weeks because of her port, but can go swimming in the late afternoons/evenings.

We are SO pleased with her results and SO SO thankful for her team of doctors. We consider ourselves very lucky.

A big thank you to all of you that have posted comments, emailed, texted, called and shared Elia’s story. We’re so grateful for all of you and know that this journey would be so much harder without all of you.

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Posted in Elia, Family Updates, JDM, Juvenile Dermatomyositis | Tagged , , , , , , , | 1 Comment

We Have Always Known She Was 1 In A Million

Our Sweet EliaThis will be the hardest post I have ever written. Why? Because our baby girl’s health is in question and we are heartbroken.

Let’s back up. Around St. Patrick’s Day Elia had a mysterious rash appear on her knuckles. At first we thought that she had irritated them by sliding her hands into her toy storage cubes and rubbed the skin. They just didn’t look like a ‘normal rash,’ but more like red blisters.

The rash was a tricky one because it would look like it was getting better one minute and then back to its original form the next. Then the irritation spread to the palms of her hands and her cute little feet. We had several appointments with her pediatrician, sent pictures back and forth, and had other doctors in the practice check it out and they were all stumped. Realizing that this may be out of their scope of expertise they referred us to a pediatric dermatologist.

On Friday, May 17th, we walked in to the dermatologist’s office expecting to be sent home with a stronger cream and be done with the whole thing. Unfortunately, that’s not what happened. I could see the concern on the doctor’s face as she asked questions and examined Elia. And as she said the words “biopsy” and “blood work” I knew that this was something much more serious.

There sat our sweet little Elia in her tiny little hospital gown, our healthy baby girl, a vibrant almost 23 month old who had never even had as much as an ear infection. I knew that the biopsy was going to be painful and confusing for her and I just couldn’t take it. I also knew that she wouldn’t understand why people that she didn’t know were holding her down–and why her Daddy was helping. I’m so thankful that he is so strong in situations like this.

I, like a big fat chicken, opted to wait outside with Zavier as I knew my fragile emotions (just 7 weeks post-partum) couldn’t handle seeing her in distress. I will say that I busted in the room just as soon as I could and gave her a big squeeze and told her that everything was going to be okay. We may have even promised ice cream.

Elia was such a trooper only crying for a couple of minutes after being let up from the table. She then picked a fun prize from the treasure box and was ready to get the heck out of Dodge. Unfortunately, we had to stop by the lab for the blood work and she had to endure more pokes.

We finally got the call with the results yesterday (on 5/22/13) and it confirmed our fears. Elia has been officially diagnosed with Juvenile Dermatomyositis (JDM). Don’t worry, we had never heard of it either. I still have a hard time pronouncing it and I’ve heard it over and over this last week. I’m confident that this is denial in its purest form.

JDM is very rare (about 3000 to 5000 cases in the US) and can be very serious.  It’s an autoimmune disease that affects the skin and muscles. She’ll have it her entire life as there is currently no cure. The most mild cases are managed by medication and go into remission in comparison to more serious cases in which the patient can lose enough muscle strength to have difficulty (or lose the ability) to swallow, sit up, or walk. We’re not sure yet where Elia fits on the spectrum and our hope is that we have caught it early enough that we can manage it and hopefully she’ll go in to remission after her medication and therapy regimen.

She had an appointment with a pediatric rheumatologist today (5/23/13) and she explained her lab reports, our plan of action and and what to expect as we start this journey. The rheumatologist was very pleased with her range of motion and strength but she let us know that it’s very difficult to test muscle strength on patients as young as Elia. She told us that an MRI would be our best option.

Her treatment will include steroids, methotrexate, monitoring visits, and specialized therapies based on her needs. She’ll be admitted into Children’s Mercy on Monday for three days to undergo three steroid infusions via IV over the course of three days. She’ll also have her MRI to evaluate the state of her muscles and diagnostics to determine if her swallowing capability has been compromised.

Once she’s released from the hospital she’ll move to once a week steroid infusions and weekly methotrexate injections. Her steroids will be tapered off until they are removed completely. She’ll also undergo blood work and diagnostics throughout the treatment to monitor her progress. It’s possible that she may remain on the drug regimen for years with the average being 3 years. If needed, she’ll have a speech therapist, occupational therapist, and physical therapy. She’ll also be monitored by her pediatric rheumatologist and pediatric dermatologist. We  have already been assigned to a team of doctors that we have been extremely pleased with.

In addition to her therapies she will be hypersensitive to sunlight so we need to exercise extreme precautions to make sure that she isn’t overexposed. She’ll wear sunscreen every day for the rest of her life even if she goes into remission as even minimal sun exposure like walking from the car into a store can cause a flare up. She’ll also need to wear a hat when she’s outside and those of you that know Elia know that this shouldn’t be a problem. Thank goodness our sweet diva loves a good hat. On sunny days she’ll need to be indoors during peak sun especially when she’s in the active stages of the disease and on her medication.

She’ll also need to be very careful with germs. We’ll need to do our very best to make sure that she’s not around someone who isn’t feeling well and learns to wash her hands well and often. Even the most simple cold or virus could wreck havoc on her system.

So, now that you know the what–I’ll tell you what I think about it. I think it sucks. I’m worried, confused, angry pissed, but most of all sad for her. In a matter of days, less than a week to be exact, her life’s path has just been altered and there’s not a damn thing I can do about it. All we can do is try our best to make her comfortable, safe from potential dangers and do our part to make sure that she has the best healthcare that we can give her.

We realize that some of you are family and very close friends and we hate that you’re finding out this way. This has all happened so fast and we have been told that we need to move even faster in order to be aggressive and hopefully stop it in its tracks. We would have loved to have reached out to each and every one of you but it just isn’t possible.

I’m hoping to post with updates on her health as often as I can but am literally just trying to keep up with life in general with two under two and our new reality. If you’d like to learn more about JDM you can visit: the Cure JM Foundation. Just keep in mind that, as with any disease, there’s mild and severe and everything in between. As someone who has Googled nonstop for days–trust me, don’t. There’s just too much out there that may or may not apply to her case–the link above is a good general reference.

We’ve cried many tears, we haven’t slept in days, and just wish it would all go away.

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Posted in Elia, Family Updates, JDM, Juvenile Dermatomyositis | Tagged , , , , | 23 Comments

Teacher Appreciation Week: Free Printables

Teacher Appreciation WeekOur resident ‘crafty mom,’ Amber Miller, has done it again! She’s created TWO super easy projects that you can recreate and send with your lovelies for Teacher Appreciation Week, which just so happens to kick off today.

Did this exist when we were kids? I’m pretty sure it didn’t–but positive it should have! 

I absolutely LOVE how simple and adorable these projects are and I know that your child’s teacher will love them too.

Here we go!

For the first project you’ll need a tin pail (check the dollar bin at Target or your craft store), flower and leaf cut-outs, pencils, grass or basket ‘stuffing’, ribbon, and the tag. You can print the tag HERE. Amber recommends assembling with glue dots. If you have little ones that want to help consider letting them draw the flower top and color it in–they’ll love pitching in to make a special gift for their teachers.

A-Bloom-Above-the-Rest

Easy, huh?!? And, the second project is even easier! Amber whipped up some homemade chocolate chip cookies and packaged them with the tag below. Cute, cute, CAA-UUUTE! And, she’s shared her template to make it a cinch to recreate. You can print the tag HERE.

Smart-Cookie-Gift-Tag-Image

As Amber has demonstrated so nicely (A+ Amber!)–it doesn’t have to be difficult or time consuming to show your child’s teacher(s) just how much you appreciate them. So whether it be one of Amber’s fun ideas or one of your own, take a minute out of your week to thank a teacher. They deserve it!

Photo Credit: @ifatma. via Compfight cc

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Posted in Crafts, DIY, Printables | Tagged , , , , , , | 1 Comment

Minted Giveaway: Enter for a Chance to WIN

Minted.TGIF—and stuff! I’m in such a good mood today for so many reasons. First, it’s Friday but we’ve already established that. Secondly, we’re missing out on the ridiculous snow that’s covering Kansas City. Sorry, KC friends, it’s total nonsense and I feel for you. And last, but certainly not least, I have a FAB-U-LOUS giveaway to share with you! Wahooo!

Last week I was contacted by Minted. They asked if I’d like to host a giveaway and I JUMPED (heals up and everything) at the opportunity. Listen up folks, because this company is the shiz. Seriously. After checking out their inventory I’ve decided that the hubs and I MUST find a reason to renew our vows because their wedding invitations are ahhh-mazing. Sounds like a good reason, yes?

If a wedding or baby are not in your near future they also have really fun custom art for any room in your home. I’ve been eyeing several prints for Elia’s new big girl room. Not only are they cute and colorful BUT you can personalize them with names and colors to match your room! How cool is that?

I know what you’re thinking…

“Haley, zip it already, I want to check out the goods!” And to that I say, go right ahead! I’ll wait. But, come back when you’re done so that you can enter to win $50 to use towards all the fabulous stuff you find! Alright, form a single file line–no pushing or shoving. Ready? Without further ado, check out Minted!

You’re back. Great! Aren’t they fabulous?

Ready for the giveaway? Let’s get this party started!

There are several ways to earn entries so enter away! And, come back each day for extra chances. The giveaway ends at 12 am EDT on May 10th–so get to it! Good luck!

a Rafflecopter giveaway

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Posted in Reviews and Giveaways | Tagged , , , , , , , | 7 Comments

Family Friendly Fun at the Terre Haute Childrens Museum

Terre Haute Childrens MuseumRecently we ventured out on a road trip to visit my husband’s family in Ohio and introduce them to our newest addition, our baby boy Zavier. We made a planned stop for the night in Terre Haute, Indiana and surprised Elia with a fun evening at the  Children’s Museum. After riding in the car for 7 hours Elia was more than ready to run off some energy and we were happy to oblige.

The museum was conveniently located across the street from our hotel so it was nice to not have to strap the kids back in the carseats after we checked in.  Elia was instantly drawn to the bright colors and the giant musical instruments located just inside the museum. The museum has a toddler zone, which she enjoyed, and even though she’s just 21 months old she was just as happy navigating the bigger kid exhibits. She was so excited to be able to push buttons, bounce balls, play with water and explore–and all without limitations. There were so many fun things to do that I’m confident that every child (and parents who are kids at heart) will find something that will spark their interest.

Our visit to the museum served its purpose: Elia had a great time, she was able to play and explore, and she was exhausted and went to bed early. Success!

Since pictures speak volumes, I’ve included some of our favorites. I wish I would have captured her excitement as she ran from exhibit to exhibit!

Here she is making beautiful music with her Daddy.

Terre Haute Children's Museum

Exploring the Toddler Room. So many fun things to play with and on!

Toddler-Room

Inside a giant bubble with Daddy! Wow!

Giant-Bubble

Farmer Elia workin’ the land.

Combine

She may not have been able to see where she was shooting but it only took a minute for her to figure out how to launch the balls into the flowers. She jotted down some notes so that her Grandpa can build these for the treehouse (hint, hint).

Treehouse

Awe! My future DIYer! You go girl!

Future-DIYer

This was one of her favorites. It is a sound effect machine and she kept going back to it over and over again.

Sound-Effect-Machine

A children’s museum just wouldn’t be complete without a display of creepy crawlies. I conveniently missed out on this exhibit (ick) to feed the baby.

Creepy-Crawlies

If you ever find yourself in the area and are looking for a fun family-friendly way to spend a few hours check out the Terre Haute Children’s Museum. We’re so glad we did!

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Busy Birthing and Burping a Baby

How-dee-do! Long time no blog. Our little man and his big sister have kept us very busy the last few weeks so my blog has been pretty quiet. My fellow mommy bloggers can probably relate to the well-intended posts sitting in draft form just waiting for the final touches and the push of the publish button. Thanks for sticking around and look for some new Team Ibrahim posts soon!

Have a great day!

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For My Peeps: FREE Easter Printable

If you’re looking for a super easy and WAY cute Easter project look no further. The talented and generous Amber Miller has created a fun treat for for her kiddos to take to school and she’s sharing it with all of us!

I’m positive that her children’s classmates and teachers think she’s pretty awesome. And, I can confirm it, she IS pretty awesome.

Ready for easy? A couple of Peeps are tucked in a cellophane bag with some coordinating Easter grass and tied up with her label and a sweet ribbon. Cute overload. You can print the label pdf HERE.

 
Thank you for sharing Amber! We can’t wait to see what you come up with next!
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