Thursday, October 25, 2012

Eosinophilia

Say that 3 times fast. So in my last post about Kennedy's test results, I mentioned that her intestines were covered in white blood cells indicating food allergies. Those cells are called Eosinophils. They told me this word the other day but I couldn't remember it and didn't know how to spell it so when they told me it was a type of white blood cell, I just stuck with that. I know what those are. ;)

So, increased Eosinophils can mean a few things... most commonly they are caused by a parasite or fungal disease. However, this has been ruled out for Kennedy through blood tests and stool samples and her biopsies. The next most common cause is food allergies which is why they wanted her to see an allergist. Because her Eosinophil count was so high, they wanted her to get in ASAP. I called the allergist they referred her to on Monday morning and they made her an appointment on Tuesday morning. Talk about fast service!!

The allergist tested her for all the common food and environmental allergies...


When all THOSE came back normal, he did more on her arms through a different process. Those tested negative too. He also did an x-ray of her sinuses which came back normal. So, he referred us back to GI.

While I was relieved that it was NOT a food allergy (because I just knew it was going to be something like wheat or dairy that she loves!!), her GI doctor was pretty discouraged to hear this. The next step is to go to Denver to the Eosinophilia Clinic. (Yes. There's really a clinic for this.) She said they're booking about 2 months out right now but they're going to push to get Kennedy seen sooner than that, however, before they see her they'll want to examine the slides from her biopsies themselves so that may take a little while.

So of course, I asked her to tell me the name of these "white blood cells" and to please spell it for me. And then I googled. And google is not my friend. I need to learn not to google. However, to save all YOU from googling (because you know you want to), I'll just give you the rundown. So when someone has Eosinophilia (I can spell that without looking now) and they've ruled out parasites and allergies, they look at other causes. These causes range from things like Adrenal conditions, skin disorders (which the allergist ruled out), Autoimmune diseases, endocrine disorders and tumors. When they get more specific, they talk about Leukemia. A lot. Especially when the patient has already had other cancers. There's even something called Eosinophilic Leukemia... who knew?!

Our list is getting short, the respiratory things like asthma have been ruled out due to the eosinophils not being in her esophagus and lack of symptoms. All skin/allergy/parasite disorders have been ruled out. Even the colitis has been ruled out which is interesting since she has a history of it. I'm still hoping the doctors in Denver will say it IS the colitis after all. Different doctors can say different things, right? We've had that happen more times than I can count. They can't tell me if the eosinophils are in her blood or not, because they didn't specifically check for that and they said since Denver will undoubtedly want to do their own blood work they'll just wait for them to check. I'm fine with that.

And so we wait. I'm praying it's just colitis. We've dealt with a colitis diagnosis for her since 2009. And maybe it's just presenting differently now. Treat it, and all those eosinophils will go away. Right? Right. That's my prayer. Please make it yours, too. I'll update when we have an appointment for the Eosinophilia Clinic. Yes. There's really a clinic for that. Thanks for praying. Again.

PS. If anyone knows how to get purple sharpie marker off skin, that would be awesome! ;)

Friday, October 19, 2012

Keeghan's Best Day EVER!!!

So my friend Lisa lives in Ohio. We met because we both happen to have daughters with Down syndrome. Her daughter Mara is completely adorable!! Back in 2008 we went to Cincinnati to the children's hospital there for Kennedy to see a GI doctor and we were able to get together with Lisa and her family. Lisa's husband Tom is a Fire Chief in their town and he offered to give us a tour of the station and let us meet the firemen and stuff! It was SO fun! Here are pictures from that day...

Fast forward to now, I happen to have this little boy who wants SO badly to be a fireman. It's a common topic of conversation in our house. Many of Keeghan's sentences start off with, "When I'm a firefighter..." Lisa and Tom know this of course, so Tom offered to talk to some of his firefighter friends here and see if he could arrange a tour of the firehouse for Keeghan. I told him that would be awesome!!

A few days ago, I got a phone call from a fireman here at Station 19. They wanted to know if it would be ok to come visit Keeghan at the house. Uhhh, YEAH! LOL I didn't tell Keeghan what was going on, I just told him that a big surprise was coming. He spent all morning trying to guess, but he never figured it out.

At 10:00 this morning, TWO big firetrucks pulled up to our house and freaked out all our neighbors. The entire crew from Station 19 came with them. And thus began Keeghan's best day ever...

 Keeghan meeting the firefighters... he's in shock. LOL 

 Checking out the truck... COOL!!!

 Listening to the fireman explain what everything is inside... 

 COOL! The hose!!

 Where's the water???

 There it is!!

 WOW! It shoots high!!

 Roll it back up...

Kameron talking through the headset. Hopefully he wasn't telling the dispatchers there was an emergency!

 Maybe the boys were talking to each other!

 Getting ready for a ride!

 Lights and sirens going... what a thrill! And more panic for the neighbors lol. 

 That was fun!

 Learn Not to Burn... That's a good motto for a fireman! LOL 

 I think he looks pretty good in there!

 That's pretty cool!... and HEAVY!

 I wonder what they do with this?!
 The kids and the firemen from Station 19!

One step closer to being a REAL fireman!

Thank you, Station 19 for making Keeghan's YEAR! He'll be talking about this forever!! Thank you, Tom and Lisa for setting this up for him! I love to see my little boy so excited! :) 

Thursday, October 18, 2012

Test Results

I got Kennedy's test results back from her biopsies and CT scan she had done on Monday...

The CT was normal, which is good. That rules out anything scary. Now we just need to figure out why she's having these headaches! She woke up with another one the other night. They're not every day, but I would say she has one probably 3 times a week. It's frustrating for her because when they hit during the day, she can't do her normal activities. Hopefully her ped will have some other ideas on how to help her.

As for her biopsies from the endoscopy and colonoscopy, NO Celiac's disease. So that's good. However, they did say the entire length of her intestines were covered in white blood cells indicating food allergies of some sort. They want her to see an Allergist ASAP. They are getting the referral done today and I'm supposed to call on Monday and make an appointment... hopefully it won't take a year to get in! So, I guess the plan is to figure out what she's allergic to and then cut that out of her diet. Technically, even though she doesn't have Celiac's disease, she could still be allergic to wheat. She eats A LOT of pasta. And bread. And cereals. Sooo... we'll see what the allergy tests show, I guess. I'll update on her again when we have results.

OK that's all for tonight, it's late and I'm off to bed. The kids are off school tomorrow (they were off today too) for parent teacher conferences so we're going to hang out and maybe do something fun... we'll see! ;)

Wednesday, October 17, 2012

How About A Giveaway?!

I think it's time for a giveaway around here, how 'bout you? ;) I was contacted awhile ago by a nice lady named Lauren who works for a company named ReJuvenescence. She wanted to send me a scented toilet paper roll to try out and review. What is it with people wanting to send me things for my toilet paper? LOL Seriously though, I like just about anything scented that will make my house smell pretty... especially my bathrooms... blech! So I told Lauren to send them on.

Later I got a box with these...


I took one out and found this...


Curiouser and Curiouser. Each row of holes is covered by a little strip of tape. Pull off the tape and it releases the scent. It smelled great! I released three rows of holes to start because I didn't want Kameron to stop going to the bathroom because it smelled like a GIRL in there! ;) 

I popped it onto the holder like this (uhhh... I put toilet paper on it first though...) 


And then... well... you know. (I try to limit my potty talk on this blog.) ;) 

So, every time you roll it to get toilet paper off, scent releases which makes your bathroom smell oh so nice. I've had mine on there about a month now and the scent is still going strong! I really like it!! And Kameron hasn't complained that it's too girly. ;)

I just found out they're coming out with scented paper towel rollers too which is kind of cool!! 

Anyway, I have been authorized to give one of YOU a gift pack of all 3 scents of ReJuvenescence toilet paper rolls. The scents are Wild Orchid, Moon Flower and Spice. If you would like to win this gift pack just leave me a comment in the comment section below! That's it! As always if you tweet this giveaway or post it on your facebook page, you can get two extra entries. Just leave me a separate comment telling me you did so. 

I will pick a winner using random.org one week from today. Good luck!!

Tuesday, October 16, 2012

Q&A #251

Too funny about you and Frank taking Spanish class together in college and you doing better than him !! Haha!
What degree did you both end up getting? I'm assuming not Spanish degree ?:) 

LOL, no... can you major in Spanish?! Frank was a music major and ran out of money to go during his senior year (partially because he switched majors half way through college and had to start over) SO he joined the Army and they paid off his loans. He would still like to go back and finish up someday (obviously not to the same college because that was in California and we'll never live there again), but they have to stop deploying him first. ;) I went to college for a year and a half. My declared major was elementary education with a minor in music. Instead I got my "Ring by Spring" (which is our college motto... Ring by Spring or your money back! LOL) and earned my Mrs. Degree ;). We got married the day after midterm finals of my sophomore year. Our reasoning at the time was that all our friends would still be in town before going home for the holidays... However, planning a wedding and studying for finals at the same time is a DUMB idea. I don't recommend it. Just sayin'. LOL So the plan was that I would take a semester off and work after we got married... 6 weeks later I found out I was pregnant with Kassidy and thus ended my college career. I like being a mom better anyway! ;) 

Keeghan looks different lately, not sure what it is exactly. Could he be losing the baby cheeks?!?! Noooo! And Kassidy looks so tall and slender and teenagerish all of a sudden. 
I think that's part of it... he is slimming down mostly because he's in a picky food stage and won't eat hardly ANYTHING so with it goes away his baby cheeks! *sigh* Repeat after me... "It's just a phase... it's just a phase..." LOL The other part is because he JUST got a haircut so his hair was much shorter than normal and I think that makes him look older. And well... then there's the fact that he's growing up. But we won't acknowledge that just yet. ;o) And yes, just two more weeks and Kass will be officially a teenager. Scary. LOL 

Aww what an amazing party and reason! Kennedy was definitely born with a dancing gene!! That girl can dance! Renee you look like you lost weight ? 
Actually I've gained! LOL I gained this pesky 15 pounds while on vacation in California thanks to In-N-Out and the million other calories I ate and I can't seem to get it back off. It's driving me insane!! For someone who's on the go and rarely has time to eat, you'd think this wouldn't be a problem! LOL But thank you!! :o) 

I love this post. :) Kennedy is adorable! :)
I have a question - hopefully it's not offensive - I certainly don't mean it that way...
Would you "take Down Syndrome" away from Kellsey? If you could "take" one diagnosis from her - which would it be? (Not that any diagnosis she has is "bad" - I hope you know what I mean!)

Not offensive at all. I would not take Down syndrome away from Kellsey. BUT. ;o) With Kellsey, Down syndrome is not her primary diagnosis, at least in my mind. Yes, she has Down syndrome. Obviously. But, the "things" that keep her from functioning in life have nothing to do with Down syndrome. They have to do with CIPA, with Autism, with RAD... would I take those away? YES. Would that change who she is? YEP it would. Is that a double standard? Maybe. But dang. The RAD sucks. There is NOTHING good about RAD. Not one single good thing. It keeps her from connecting and bonding on any deep level with ANYONE. It makes her push away and run from anyone who tries to get close to her. It makes her act out and push away anyone who tries to break past the barrier that she has worked so hard to put up. As my mom said the other day, "I never know if I'm going to get hugged or hit and kicked." The CIPA makes it so she can overheat, self injure, it's dangerous and scary. Taking that away wouldn't change HER, it would just make her life easier and safer. The Autism (which hasn't been officially diagnosed but her ped assures me she has and I agree with)... that would change her. I would take it away. Maybe with it would go her sensory issues, her apraxia and so many other things that cause her frustration and hinder her from doing what she wants to do. Maybe it would unlock her little brain. Maybe not. I don't know. If I could only take ONE away, I'd choose the RAD, hands down. I hate it. Not fair for one little girl to have so much to deal with. :( 

I hope this doesnt come across rude, Im just wondering do you consider kellsey your daughter with DS to? You talk so highly of kennedy, my heart just wonders do you see the good in little kellsey
Well yes of course, but Kellsey's not HERE right now. And honestly, she's having a really hard time... still. (And I'm not talking about developmentally because I HAVE talked about that before... she has AMAZING gross and fine motor skills and can literally run circles around Kennedy). As I stated above, I don't consider Down syndrome to be Kellsey's primary diagnosis... yes she has it, but there's SO much else on her plate that is... not more "important" but more... I don't know... affecting? Maybe they need a RAD awareness month. But seriously, it seems that no matter WHAT I say lately, I'm either too positive or too negative... I show too much good or too much bad. Nevermind that it's what is REAL for us at this moment in time. I don't know what the future holds for Kellsey. My heart hurts every day for her. We spend every day trying to figure out what she needs, how to help her, how to help those working with her who are worn out and frustrated. And the truth is, we have no idea what to do. It's a hard thing to see people who are working with your child ONLY see and say the negative all the time. To only get negative reports home every day. To know that MOST of her school day is spent in time out because they can't control her or keep her from injuring other children. So no, I don't talk about her all the time, but sometimes it's because I don't know what to say. Sometimes it's to protect my family from rude comments from people who have NO idea what reality is for us. Right now we need to focus on HER and her needs, and until we figure it all out, so there aren't 500 "hands in the pot", we are just... quiet. I hope you can try to understand or at least try to respect that for now. 

SO AWESOME! I am glad that even though they are a little crazy on the show they were able to make Kennedy's night. Who is Allie? And I see that Brooke and Paige weren't there... does that mean they're not on the show this year?! 
Allie is a new dancer on the team. She is really sweet. I have NO idea about her mom. I saw her, but I don't even know her name. In fact, Kennedy was the one that reminded me of Allie's name! haha She's much better with names than I am. Brooke and Paige were not there which is a bummer because I really like them! LOL I didn't ask if that was a permanent thing or just for the night but from what I've read it was Brooke's homecoming that weekend... and no one who "knows" will say anything online. I guess it makes for more drama! LOL 

Oh, and since the camera's were there, maybe you'll be on the show! Gahhh, could you imagine?
Well, I did have to sign a photo release, so it's possible, but hopefully I will stay OUT of the picture! haha I know Kenn would love it though! ;) 

 Just wondering if your dr had ever mentioned that hormones could be the cause of her headaches. We had been told that at one time when Taylor was having lots of headaches. I know that Kennedy dealing with hormone issues isn't something you really want to think about just yet :) 
No, they haven't really said much of ANYTHING yet. Her ped did say that he didn't expect the CT to show much of anything, which is ok with me. :) Someone else mentioned hormones too and that's about the time that my migraines started. I'm really hoping the girls don't inherit those from me because they suck!! 

Monday, October 15, 2012

Kennedy Update

We are home and Kennedy is doing great! We've actually been home since before lunch, but our afternoon consisted of her eating (a lot!) and then the two of us crashing for a nap before picking the kids up from school. Kameron had honor choir after school so he just got home. Thankfully one of the ladies from our small group brought us dinner tonight so that's covered! :) Thanks, Blythe. Now we're just going to eat some food, and hopefully everyone will be ready to get to bed early. I know that Kennedy and I will be! :)

We don't know the results of either of the tests Kennedy had today. I didn't hear anything at all about her CT scan, but her GI doctor came in after that part and told me that everything went well and we'd have the results of the biopsies in about a week. She did say that she saw a couple spots that looked suspicious for Celiac's Disease. They checked her blood for the marker for this and that was negative. I thought that if it was negative then she couldn't have it, but apparently in 3% of people with Celiac's their bloodwork won't show it. SO we'll see. (Sidenote: Celiac's Disease is more common in kids with Down syndrome, so it wouldn't be a total shock if she ends up having it.)

Anyway, she is feeling good tonight and I think after a good night's sleep she will be ready for school tomorrow! Thanks to everyone who prayed for her. :)

Prayer Request for Kennedy

Kennedy is going in this morning for a couple procedures at the hospital. She is having a colonoscopy, endoscopy and CT scan done. The first two were ordered by GI to hopefully find the cause for her ongoing stomach issues. She was diagnosed with Lymphocytic Colitis several years ago which we were told was likely a side effect of the chemotherapy she went through. However, the medicine they put her on stopped working early in the year. Her GI doctor here wanted to make sure that it's still JUST the colitis and not a new issue before trying a different treatment so the biopsies they take today will show that, one way or the other.

The CT scan is on her head and neck to see if they can find the cause for the ongoing headaches she's been having lately. They seem to have become a lot less in the last week or so, so that's a good thing! We were really worried for awhile. Still, better safe than sorry... she has lots of wires and plates and other "stuff" in the back of that pretty little head of hers. Her ped just wants to make sure everything is ok which will probably mean sending the scans to her doctor at Shriners for his opinion, but we'll see. I'm just glad they were able to coordinate both tests since she has to be sedated for both. Heaven knows she's no stranger to anesthesia, but any time we can combine, it's a good thing!

Anyway, please keep her in your prayers today!! We should be back home by early afternoon and hopefully we can catch a little nap before I have to pick the other kids up from school. I'll post again and let you know that everything went well.

Sunday, October 14, 2012

Guess Who Got To Meet Kennedy!

The cast from Dance Moms was in town tonight to do a convention. Our friend Hailey was going up to do her solo so we decided to go too and brave the craziness! Actually, besides us getting lost twice, it really wasn't too crazy... but that could be because they moved the convention to a different place than was listed on their website. *ahem* LOL 

Anyway, Kennedy and I were standing out in the hallway at one point and the moms walked by and Melissa immediately noticed Kennedy and waved to her and said hello. It was all over after that. The girls came by and turned Kennedy into a rockstar. They LOVED her. They asked her all kinds of questions and were SO sweet to her!! Kennedy was excited to tell Mackenzie that they were the same age and she showed them some of her dance moves, of course! :) 

She met Ms. Abby too who was happy to pose for a picture, but the moms and the girls really made Kennedy's night. Holly stopped and talked to her for a few minutes (when I think she was supposed to be listening to the film crew... oops!) but she was so kind to Kenn and then when Christi walked by and heard me mention that Kennedy wanted to meet "Chloe's mom" she completely turned around and came back for a picture. :) Kennedy was literally on Cloud 9 and I had lots and lots of tears in my eyes. *sniff*

Here are a few pictures from Kennedy's evening... 

 Allie, Chloe, Kennedy, Maddie, Kendall, Mackenzie and Nia

Kennedy & Abby

 Kennedy and Holly... she was saying, "I KNOW YOU!" LOL 

 With Christi (or "Chloe's mom" as Kennedy calls her) 

Walking with Mackenzie

 It seems like they've known each other forever! LOL 

 Kennedy was telling them about her solo... And Chloe asked if she could be her BFF to which Kennedy replied, "Probably." HA! Now it's all she can talk about! 

A little girl talk ;) Nia, Kennedy, Mackenzie

Thank you, thank you, thank you girls and moms!! Your kind hearts made Kennedy's night! 

Tuesday, October 9, 2012

So Close...

So, it's Down Syndrome Awareness Month. October is the month that we bring awareness. We celebrate our kids. YAY! And for the most part, I do that. Every day on Facebook I've been posting cute baby pictures of Kennedy and sharing statistics and facts and I LOVE my daughter. Let's face it, she's a rock star. If you know anything about her, you know that she has overcome A LOT with a huge smile on her face and said, "Now what?!" She amazes me over and over.

But.

For one minute, I am going to step away from the yellow and blue pom poms and I'm going to whine. Just for a second. Because sometimes, having Down syndrome isn't fair. People ask me all the time if, given the choice, would I take it away from Kennedy. And I wouldn't. Because while I do not believe that Down syndrome defines her, it IS a part of who she is. If she were not born with Down syndrome, she wouldn't be HER.

But.

She also wouldn't have to work SO DANG HARD at every freaking thing she does EVERY single day. I watch her struggle in school... to read, to write, to keep up with her friends, and she's close. She's so close. And she's doing a GREAT job, but she knows she has to work twice as hard to do what everyone else is doing. And it's frustrating for her.

I listen to her when she comes home and says things like, "I was in PE, but I just. couldn't. do it." Her favorite class. She loves it. And I know her friends encourage her. And I'm sure she's close. And I want to tell her, "Baby, I can't make those baskets either." But sometimes that just doesn't make a difference.

I watch her struggle in dance. Something she LOVES more than anything else in the world. She wants to get it JUST right. She watches herself in the mirror. She practices in her room. Every day. And she's SO close. But she knows it's not quite perfect. She knows she's good, but maybe just not good enough. And sometimes, that hurts.

Sometimes I see my daughter through the eyes of the rest of the world. They see Down syndrome. And that's not fair. They want to put her in this box and say, "She can't." I see this beautiful, smart, amazing, self-confident, talented little girl who can do anything she sets her mind to. I have NO doubt about that. She has worked harder at everything every day of her 8 years of life than I have in my 33 years, and sometimes it's STILL not good enough and that just sucks. Some days it makes me want to scream. Often it makes me cry.

But.

I will brush the tears away. Like I always do. I will pick up my blue and yellow pom poms once again and I will pick Kennedy up from school in a little while. And when the "world" tells her that she's not good enough, that she's not smart enough, that she's SO close, but maybe not close enough, I will pull her tight and make sure she knows that she is always the VERY best Kennedy in the whole wide world and I'm so proud of her for working so much harder at life than anyone I know.


Happy Down Syndrome Awareness Month