Prayers for Tripp

I stumbled upon THIS BLOG a few weeks ago and my heart literally hurt for this little boy and all the pain and suffering that he has had to go through in his short little life.  My heart went out to his Mom and everyone who has devoted time and more importantly love to this little boy to make his life that much better.  I haven't been able to stop thinking about him, or his family, and then I saw a new post on their blog tonight and I wanted to share with everyone, Tripp's story.  Please check out their blog, but more importantly, please say a prayer for this precious little boy!

Oh What a Night...

Last night Sophia had an annual sleep study at Riley, just to make sure that those pesky tonsils and adenoids aren't interferring with her airways or disrupting her sleep.  We haven't had any trouble with her sleeping, in fact she is an excellent sleeper, most of the time, but she does have enlarged tonsils and so they may need removed sometime down the road.  So her pulmonary nurse practioner would like her to have a yearly sleep study, which SEEMS painless enough, BUT usually it's a nightmare.

We've had lots of nap and overnight sleep studies in the past 2 years, but last years overnight stay has been embedded in my brain and needless to say I was not thrilled about going back last night.  BUT, to my surprise, Sophia was pretty amazing!  This is not to say that last night wasn't completley EXHAUSTING, but it didn't throw me into a near emotional break down like last time.

After we got there and filled out our paperwork, we went back to our room to get ready.  Sophia was taking everything in and listening very closely to everything the respitory therapist was telling us.  Then two other ladies came in to dress Sophia up in wires, gauze and bandange.  This has ALWAYS been where the nightmare starts!  Last night was shockingly different.  She was so brave and grown up and with a little emotional support from her Mama, she made it through like a champ.  Of course there was that big bottom lip that kept sticking out, and her tiny hands that she needed me to hold, and few tiny tears that slipped out of her eyes, but even though she was obviously a little scared, she held it together and I was SO, SO, SO proud of her!!!  Once she was looking like, well like she just had brain surgery, it was time to go to sleep.  Yeah right!  Again, usually this is where the nightmare continues with crying, screaming and no soothing technique works, but she was calm and collected last night and with my hands in hers, she felt safe.  She looked around for a while, not sure if she should risk going to sleep, even though she was very tired.  Besides the get up all on her head and face, we had a light show going on in the corner with an annoying beeping sound, that just wouldn't let her drift off to sleep until 58 minutes later.  Wow! was that it?  Is it really going to be this easy?  Nope.  I stepped out to the waiting room and about 15-20 minutes later one of the ladies came to get me, she was awake :(  I went in to get her back to sleep and a replay from last year happened.  Arms were flying, legs were kicking, backs were arching and mouths were screaming.  She was like a caged animal trying to escape.  I was shocked and a little nervous for how bad she was reacting and this went on for maybe 15-20 minutes, but then she calmed down and slowly drifted back to sleep.  That was our one and only "bad" episode last night and the rest of the night consisted of me getting up, what seemed like every 20 minutes to lay her back down after she tried to roll over and instead of laying on her tummy she just sat up and stayed there.  Sophia starts out on her back, but always ends up on her tummy and sometimes she ends up at the other end of the bed as well.  But when you have 30-40 wires hooked up to you, it's hard to move around that much and get comfortable. Finally at 4:30am we realized her wires on her head were all coming off, from all the moving she had done through the night and we could either rewrap her head for the remaining hour of the test, or call it a night, and we took option number 2.  We got kind of cleaned up, packed up, and hit the interstate at 5am.  Made it home and into bed by 6:30am and we both snoozed away till 10am.  Overall, I was so impressed with how Sophia handled it all.  It's amazing how much things have changed in a year.  It was so weird seeing her last night being so, grown up.  I still look at Sophia sometimes and see my little baby that I love to hold and cuddle with and still have to do a lot for her, but then I get glimpses of another little girl, and she is growing up into a toddler and looking at acting like a big girl and that makes me so proud!

just getting started

all the wires are on her face/head and wrapped up to keep them secure for the night

nose gear is added to keep track of her carbon dioxide levels

doesn't she looked thrilled?

alright, who's ready for some sleep???

4:30 this morning getting everything taken off

someone is still tired, and that made two of us!



Can't live with them, Can't live without them

Our house is LOUD!  It's CRAZY!  Most days, it gives me a HEADACHE!  But then I have days, which are very few and far between, where it's quiet and calm and nothing much is going on, and I think how much I miss the LOUD and the CRAZY, and maybe not so much the HEADACHE.  I'm having one of those days.  Where I guess I don't totally miss all the chaos, but the little person that makes up the chaos :)  My big kid is gone today, off having fun at her grandma and grandpa's and I am missing her.  She is my right hand girl, or boy if you asked her!  She brings so much life and excitment to our house.  There is never a dull moment, or a moment of silence, when she is around.  And right now, I am missing that. 

I've recently taken it upon myself to start giving myself a "Mom's Night Out" every once in awhile.  I think I deserve it.  And it's wonderful to take a few hours every now and then to connect with friends, with no kids around, and just talk about real life and grown up stuff.  I always miss my kids when I go out, and wonder what they are at home doing and a piece of me always feels like I am missing out on something special with them, just because I FEEL like I need a little me time.  But I've been realizing over the past few months that I do NEED a little me time every now and then.  It refuels me to an extent.  It gives me just what I need to go back home and be a better mommy. 

I guess being away from my kids and missing them is always a good thing, as long as it happens in small doeses.  When you are with someone 24/7, you sometimes forget just how great you have it, until you don't have it.  It makes you appreciate the one's you love more.  It makes you realize that there is no other way you would rather live your life, than how you are living it right now.  My kids are definitely my life, and I'm not so sure if that is a good thing or a bad thing?  Right now, I would have to say it's an awesome thing.  They are little, and they still need me, and they still want me, well most of the time, and I just wouldn't want it any other way.  Just when I think I can't live with them anymore, :)  I realize that I totally couldn't live without them!  Oh, I love those little people SO MUCH!!!!          

Coolin' off from the HEAT

We decided to brave the heat today, with a little slip n slide fun!  Jayden actually did a lot better on the slip n slide than last year, and pretty much slid herself all the way to the end like a pro.  I on the other hand, remembered my encounters with the slip n slide last year and this time around I gently glidded onto the slide and moved about 2 feet, but I was okay with that.  And Sophia, being her first time with the slip n slide, kept herself in a safe spot at the end of the slip n slide for most of the outdoor fun.  The girls had fun, and so did I, and we all kept thinking of poor Daddy who we knew was hard at work, sweating to death :(  Don't worry Randy, the slip n slide is still up if you decide you want to cool off when you get home!   

Sophia's "safe spot" :)

Painting 101

Today, we decided to paint.  This is usually a disaster and the actually painting typically only lasts about 4 minutes(with set up and clean up lasting 30 minutes), but today wasn't as bad as I anticipated.  Jayden actually painted for more like 15 minutes, Sophia on the other hand lasted the usual 4 minutes.  I didn't even have to stress about Sophia eating the paint, I gave her pudding to paint with, which she had no desire to eat, go figure.   

Doesn't she look so grown up?

Well I guess she did try it once, but that was the end of that!  Normally her mouth, inside and out, is covered in paint, when I give her the real stuff!

Starting her masterpiece

Sophia got cleaned up and SO wanted to get her hands on the real stuff!

BEAUTIFUL! (even with all that crazy hair, LOL )

Cuddling with Daddy

Daddy makes a really good pillow :)

Smooches for Mommy

If you have ever had the pleasure of giving this little monkey lovins or have been blessed with receiving them from her, then you know that this baby gives lovins wide mouthed with a lot of tongue!  It's not everyone's cup of tea, but for this Mama, I LOVE her lovins, any way she'll give them to me!  (PS: All photos were taken by Jayden; not to bad eh?)



I added this picture just because of the face Sophia is giving, cracks me up for some reason :)



Planning for the Future

I feel like a huge weight is beginning to be lifted off my shoulders.  Usually I don't like to think too far into the future, the unknown can always seem a little scary.  So I try to focus all of my energy on today, which is usually all the energy I have, for ONE day at a time.  But planning for our future, and more importantly Jayden and Sophia's future, is something we have be thinking a lot about for a while now.  A few months ago we attended a seminar that was held at ISU about "Planning for your Dependent with Special Needs. "  It obviously sparked even more interest, and lots more questions, about what could happen if we didn't have a plan in place for our girls, especially Sophia, should the unexpected happen.  So because we attented the seminar, we were given a free 90 minute consultation with the financial planner and Saturday was our appointment up in Indianapolis.  He is very knowledgable in what he does, and having a son with special needs himself, he is very compassionate and understanding of families like us.  So we've started the process of planning for our families future, and that is a great feeling.  Of course I hate to think that I may not be here forever for my girls, but unfortunately I don't know what the future holds and I need to know in my heart that they will both be taken care of.

I don't know what is in store for either of my girls, but I feel pretty confident in saying that Jayden will be able to hold down a full time job, live on her own, and provide a future for herself.  But right now, especially at only the age of 2, I have no idea what Sophia's future will be like.  I've learned gradually over the past two years that when you have a child with special needs, it can be very harmful to their future should you leave anything to that child in his or her name specifically.  So along with some other financial planning, we are setting up a special needs trust fund for Sophia, which will ensure should something happen now, or more importantly after Sophia turns 18, any money left to her will in no way affect her eligibilty for goverment assistance in the future.  It's crazy, but if Sophia has more than $1500.00 in her name, all goverment benefits could be taken away from her!  $1500.00 wouldn't even put a dent in annual doctor bills!  Anyway, we have set up a financial plan for our children and with all of the love and support that we have from our family, I know that our girls would be loved and well taken care, both emotionally and now financially.  I just pray that none of this will have come into play, at least not for a VERY, VERY, VERY long time!

Fireworks

We bought some kiddie fireworks on Sunday and set them off at home with some good friends.  Jayden wasn't really into the fireworks, they were loud and the sparklers scared her.  This was the only sparkler that Jayden did that night.

Jayden and IndiAnn with their sparklers.  IndiAnn loved the fireworks, so our kidde display didn't go wasted!

Jayden and another one of her BFF's, IndiAnn, at the BIG fireworks show.

Monday night at Fairbanks park.  I wasn't sure how Jayden would like the BIG fireworks, since our small display the night before wasn't a big hit, but she ended up loving the fireworks and once again the company we were with, was GREAT!

Happy 4th of July!

WISHING EVERYONE A SAFE AND HAPPY 4TH OF JULY!

4th of July pool party

A fun day of swimming with good friends

"swimming makes me so tired"

Jayden and her BFF

Get Inspired

Check out these inspiring stories here of how these people have taken their own life experiences and decided to make a difference in the lives of others.