I just got a little ray of sunshine over here on this cloudy day!  One of my new blogging friends, Amy, sent me this Lemonade Award as a way of acknowledging my blog…isn’t that so sweet? It’s my first unofficial award!  And I will display it proudly!  There are a few “guidelines” that go along with this award…

First, 5 things about me that you may not know…1) I am an Arizona native; 2) I performed in the halftime show of SuperBowl XXX here in Phoenix; 3) I recently switched all of my technology over to Apple and LOVE IT! 4) I go through at least 1 pair of Uggs a year (is that bad?); and 5) my favorite country (after ours, of course), is Germany, a place I have visited 4 times.

It’s my turn to pass it on to….

Kimberly @ Raising Olives

Amy @ The Adventures of JAMC (she gave it to me, but I really am enjoying her blog…we have a lot of similarities!

Lisa @ Zippy Tidbits

Lolli @ Better In Bulk

Thanks again, Amy, this was fun!

I’m torn on that question.  I don’t dislike them.  But how often to I actually go through with them?  It’s always the same ol’ “lose weight” etc.  However, I do have some tangible goals that I will work towards.  Maybe that’s the semantic I need to use….”working towards”.  It doesn’t set me up for failure.

Here’s my first and foremost resolution/goal/challenge (I think I like the word challenge)  Yes!!  A challenge I’m working towards achieving!  Okay, back to it:

My first 1/2 marathon is coming up.  My goal is just to finish.  I have a loose goal time of 2 hours 30 minutes.  If you want to see which half marathon I’m doing, you can check it out here.  I told myself years ago that if I ever did something crazy like run a 1/2 marathon, it would have to be at the beach.  For some reason, I can run a lot longer when I have something pretty to look at!  The sound of the waves and that seaside smell doesn’t hurt, either!  And it seems like a pretty manageable course, too!

I'm gonna take one of these home with ME!

I would also like to start scrapbooking again.  It’s something I truly enjoy doing.  But it’s just hard when you have 2 little kiddos running around that always want to be into whatever you’re into.  But I have that excuse no more…both of my kiddos are in school full time!  Perfect opportunity, right?  I surely can squeeze in some scrapping amidst the training I’m doing!  Anyway, a fellow blogger named Christine has started a new business to help others scrap successfully!  She is even giving away a free consultation to help you get started!  Anyone can join, not just experienced scrappers or fellow bloggers.  So if you are interested, visit her blog called Memories By Christine and check her out!  I have some serious catching up to do!

My parents got me this book for Christmas...a hint?

Any other goals I’m working towards?  Hmmmm, I’ll have to think about that one.  What about you?

What challenges are you working towards achieving?

Wow, we had a great Christmas, did you?  We are lucky (and I do mean that) in that both my husband’s family and my family both live here…about 10 minutes away from each other!  So it does make it nice to not travel during the holidays.  Of course it can make for busy days…going from one family to the other.  Now that our kids are out of infancy and toddler-hood, it’s a lot easier to move about with them, too.  Fortunately, this year, we were able to all spend Christmas day together…all 20 of us…at my in-law’s house.  It was a nice day.

The one issue that we have time and time again is Emma’s over-stimulation.  I don’t know if we think it will just go away, or that she’ll start getting used to crowds, but our daughter gets over-stimulated so easily.  She doesn’t act out or have temper tantrums, fortunately.  She becomes very clingy to Brett or me, not wanting to talk to anyone, meet anyone, or interact.  It takes her awhile to warm up.  Her cousins (ages 13, 10, and can almost always help the situation.  But if it’s too much, usually a quiet room with a book or video will help her decompress.

She’s been like this since birth…always sensitive to “busy situations”.  And we’ve all dealt.  But still…I keep thinking she’ll get used to it and it will disappear.  On the positive side, she recognizes when she gets over-stimulated and will go into a back room by herself with a book.  And she’s cool with us not being there with her.  In fact, she prefers it.

I know that there are many kids without special needs that get over-stimulated quickly.  Do you have a child like this?  What do you do to help the situation?

*I will post Christmas pictures…I just haven’t even uploaded them to the computer!  Sunday is all about putting away the Christmas decorations until next year!

Emma on the Polar Express...a little over-stimulated!

It wasn’t enough that Mason had minor surgery last week, but now they both have colds.  It’s particularly uncomfortable for Mason, too, poor guy.  The pressure with the healing wounds is pretty painful.  Needless to say, we’re stuck at home and we’re doing what we can to not get stir-crazy.  I’m thinking a trip to Blockbuster might be on the agenda…just to get some fresh air AND stock up on some Christmas videos.

What do you do when you’re kids are sick?  How to you keep sane?

We’re chatting about this in my community…go check it out!

(Pre-post post-edit: I’m easily distractible in this post.  I’m not sure why.  Sorry.)

Today Emma and I went to see Ballet Arizona’s Nutcracker performance.  It makes me miss my ballet days…just a little!  Namely, I wish I could have a ballerina’s body and dance in pretty tutus.  Anyway.   So it was a wonderful performance today…6th row (thanks, Libby!) and pretty close to center stage!  The music was great and this ballet held Emma’s attention for the FULL 2 hours.  Seriously.

Now, anyone who has a child with any behavioral/medical issues (or a “typical” child who’s 5 and under, really), might be a bit nervous to take them to such a performance.  Or they might be a bit nervous to take them out in any public situation.  Let’s just be honest!  And I was the same way for the longest time.  If there was any chance of a meltdown and then eyes on us during/after the ordeal, I pretty much avoided it.  Who would subject themselves to that kind of experience?  Not me!

I’m trying to think of when I started venturing out.  I think maybe it was just this summer.  Mason had just turned 3 and Emma was 5 1/2 (you know the 1/2 can make it or break it, right?).  I attempted some movies in the theater.  I went to the first showing of the day, and got there SUPER early to scope out our seats.  The kids had their own popcorn and drink, and if need be we could bolt and run.  The first time or two Emma got pretty antsy.  And there was at least one movie that was scary (Astro Boy….won’t see that again).  Mason got antsy too…only in a 3-year-old-boy kind of antsy.  But we kept going.  And we never had to leave a theater early (thank God!).  We stuck it out.  I think they’ve probably been to the theater about 5 times since the start of the summer!  In fact, on Wednesday I will take them to see The Frog And The Princess (or is it The Princess And The Frog? you know what I mean).

Okay so my point is that it’s a trial and error thing.  You have to get them out there to experience these things.  And you need to let them know up front what your expectations are of them.  I’m not saying it will work the first time.  I’m saying practice makes perfect (or somewhere close to that).  It’s like traveling.  I have friends who are nervous about taking their kids on trips.  Well, just do it!  They need to experience that stuff! Our kids are awesome on 7 hour car trips, or 4 hour flights back east.  They’ve got it!

Again, back to the beginning.  The Nutcracker was awesome!  I highly recommend it!  The costumes were beautiful, as was the stage and backdrops.

We’ll be going back next year.

Do you have a scary out-in-public story?

What did YOU do this weekend?

Clara in the Nutcracker

I’m becoming active on a community I found about a week ago…BlogFrog.  They are a company that helps you build your own blog community, brand, fans, etc.  They are extremely helpful and it’s been a lot of fun meeting new people and reading new blogs!  (okay, and a wee bit time consuming, but fun none-the-less)

They have a wonderful challenge this month that will help give back…I love this idea!

Come interact with other readers of this blog and help The Children’s Hospital at the same time!  BlogFrog is sponsoring the “Give the Gift of Community” challenge to its members to inspire blog readers to connect with their peers in communities this holiday season.  If my blog gets 20 new participants to start or reply to a community discussion, BlogFrog will donate $10 to The Children’s Hospital, one of the top 10 hospitals in the country for kids and teens. Don’t be shy, hop on over to my community and meet your fellow readers!  I hope to see you there!!

Have a wonderful weekend and see you back here on Monday!

Not A Happy Camper

I can’t say I blame him!  But he did great and apparently the nurses wanted to keep him!  This is interesting…he’s got a uvula (the hangy thing in the back of your throat) that is split in two. It looks like a snake tongue (from what the doc told me!).  Kids with this condition are more prone to ear infections (interesting!).  And, kids with this condition have a harder time recovering from adenoid-ectomy (you know what I mean), if they take all of the adenoids out.  So for that reason, they took about 75% out.  And the doc said he should be breathing much better soon.  I guess his were big!

And now he’s resting on the couch.  Today we will fill up on jello and Scooby Do!

What are you up to today?

Okay here’s the deal: I have one child who has been through the wringer, medically speaking.  Shouldn’t my other child be completely healthy?  Doesn’t that make sense?  Apparently we didn’t get dealt those cards.  Don’t get me wrong, Mason is a pretty healthy little guy.  Although he had his first surgery for pyloric stenosis at 5 weeks of age. If you do a little math with me, Emma had been in the PICU herself just 4 months prior (I was 7 months pregnant when she got her diagnosis). He recovered fully and hasn’t stopped eating since then!  At age 10 months he got tubes in his ears for his chronic ear infections.  I’m sure like 99% of kids have had tubes…no big deal!  Emma had them, they were the best thing in the world!  Mason’s fell our around a year ago.  And in that year, he’s had 7 more ear infections.  So tomorrow we go back in for another set of ear tubes AND adenoid removal.  Now I know the whole surgery itself takes about 5 minutes, but STILL!  Can my new deal be that after tomorrow he’s completely healthy forever and ever?  Please?

Very early on in Emma’s diagnosis, I got connected with two organizations that had online communities.  I  became very involved with them through email.  I started friendships.  I received advice and encouragement.  That support has meant the world to me.  No joke.

If you are a parent of a child with special needs, my advice to you is to get connected. You won’t be sorry.  Google whatever syndrome it may be, and see where you end up!  One of my groups is through Google…it’s so easy to stay connected with them, and there’s always someone there to help answer a question!  The best thing about forming these bonds is that these people know exactly what you’re going through.  Seriously.  Everytime I have a question, someone has “been there, done that” and has taken the time to help me with it.  There’s no comfort quite like it.

If you want to take that “connection” one step further, attend a conference.  Emma and I have the amazing experience of meeting my “online friends” this summer at the MAGIC Foundation annual conference outside of Chicago.  I can’t even begin to tell you what an amazing time I had.  We were part of a huge family where no one was looked at oddly…no rude comments were made…no explanations had to be given.  It was truly magical!  During the day, I would attend educational sessions with doctors, psychologists, etc.  Emma had a blast in the day care that was provided right down the hall!  At night, they put on wonderful dinners for everyone to attend.  There was dancing, games, music, and more.  Truly fun for the whole family! And since we were out there, we spent an additional 5 days in Chicago and had a BLAST!!  (wonderful city, by the way…I’ll be going back!)

So in the end, my advice is to get connected with your community.  Let me know if you need help!

Emily and Emma at the MAGIC Foundation

A field trip to the local water park in Illinois.

I am SO lucky to call these ladies close friends! They "get it"!

Are you connected with any groups?

Sorry for the delay in this…it wasn’t my intention!  However, I do have to share with you that we had a wonderful trip up north this weekend to visit the Polar Express!  This was our 4th year doing it and we had a wonderful time!  The kids got to play in the snow, they saw Santa, played with their friends, and overall, a fun time was had by all!!  And you know how it is, after a trip comes all the fun that unpacking can bring…laundry, groceries, tidying up again,  and a wishful early bedtime for me!

In my last post, I described to you what the meaning of ONH meant.  It’s more than Emma not being able to see well.  Of course we didn’t know that during her diagnosis at 4 months old!  But boy did we learn!  If you need a refresher about how Emma got diagnosed with SOD, read this.  Oh, and just a refresher, SOD is the acronym for Septo Optic Dysplasia.  In this post, I’ll tell you what exactly SOD means for Emma.  The interesting this about SOD, is that there’s no such thing as a textbook case.  I haven’t found two children that present the exact same symptoms that SOD can bring.  It’s a HUGE spectrum disorder, just like autism.

In my opinion, Emma’s case of SOD is pretty mild.  I had a medical professional disagree with me on that, once.  She said that there are no varying degrees of SOD.  I beg to differ, and I’ll tell you why.  First of all, there are 3 components of SOD, and you need to have 2 of them to be diagnosed with it.  The three components are hormone deficiency, Optic Nerve Hypoplasia, absence or malformation of the septum pellucidum and/or corpus callosum.  What?  Foreign language?  Click on the terms to get the wikipedia definition.  Or I’ll give you my very short answer.  Both of those (SP and CC) divide the brain into their hemispheres.  If I’m correct, there’s a bit of a debate as to how much they really contribute to a person.  One helps with communication between hemispheres (SP, I believe).  The other one helps with emotions.  I don’t know much about the corpus callosum or the septum pellucidum because Emma’s are both in tact.  However, she obviously has the ONH and she also has  hormone deficiency.

The hormone deficiency is a big deal.  She doesn’t produce hormones!  Now, it’s a little embarrassing to admit to this, but I don’t know exactly how many hormones a child her age produces.  I just know the ones she doesn’t produce.  Shouldn’t I find out the answer to that?!?  Anyway, she doesn’t produce thyroid, growth hormone, and cortisol.  Of those 2, the growth hormone and cortisol are the most important.  The growth hormone is a shot that we give her every night.  Our body naturally produces GH and releases it at night time.  The interesting thing is, GH doesn’t just help with lateral growth.  It helps all of our organs function!  So when people ask if she’ll stop taking it as an adult, the answer is NO.  She’ll need it for life (or, like Brett says, “until medical science catches up”).  Does she mind the shot?  Not now.  In fact when we tell her we’re getting it ready, she’ll pull her sleeve up and have her twiggy little arm waiting for us! Of course it wasn’t always like this.  It took quite a few months for her to not scream every time we came near her with it.  I can’t say I blame her!  Personally, I couldn’t get myself to give it to her for about 2 months after her diagnosis.  Just couldn’t do it.  But now that she’s on it, she’s about 50th percentile for height and about 35th for weight.  Perfect.  (It should be mentioned that before her diagnosis, she was falling off the growth charts)  Now for the cortisol.  For anyone who doesn’t know, cortisol is a hormone that our body automatically produces more of when we’re stressed, injured, or sick.  It’s our “stress hormone”.  Our body is always producing it, which is why she gets it 3 times a day…breakfast, lunch, and dinner.  The critical part of her not producing it is when she gets stressed, injured, or sick.  Our bodies produce more of it naturally…hers does not.  So, if she’s sick with a stomach bug, and can’t keep anything down, it isn’t possible for us to give her a “stress dose” (which is 3X her normal amount of medicine).  It’s imperative that we make the right decision: do we give her solu-cortef (which is her emergency cortisol that is injected into the muscle with this HUGE needle) or do we take her to the ER.  Fortunately for us, we’ve never had to give her the solu-cortef shot.  We’ve always gone to the ER where they pump her full of fluids and extra cortef (the brand name) if need be.  We are supposed to give her the solu-cortef when she goes into adrenal crisis, basically when her organs start shutting down.  There are signs to look for…fortunately we have never gotten to that point.  That’s the scariest part: the fear of adrenal crisis.  It can happen quickly and without warning.  We carry around the solu-cortef everywhere we go.  We also carry a blood sugar monitor to test her blood sugar, as low blood sugar can be a sign of adrenal crisis.  Remember when I took her to the ER that first time?  Her blood sugar was 11.  It’s supposed to be anywhere from 80′s-110′s.  You could say she was in adrenal crisis then.  We just didn’t know it.

Did I mention that 80% of kids with ONH also have hormone deficiency?  80%. Are you wondering why Emma’s opthalmologists didn’t share that with us when she got diagnosed?  Us too.  That would’ve saved us a lot of stress, heartache, and turmoil, and all that for Emma as well.  That is why I feel it is so important to get the word out about ONH and SOD.  Here’s another little tidbit of information.  ONH is the leading cause of blindness in children.  Ponder that for a bit!