Only $1,435 to go...

We have officially set up our fundraising page for this years 16th annual Down Syndrome Indiana Buddy Walk.  We have inched up our goal from last year and with our successful yard sale that we had a few months ago, we are already well on our way! 

This years Buddy Walk will be held on Saturday, October 12 in Indianapolis.  We are excited to get things rolling in our fundraising efforts and putting a team together to walk with us again this year!  If you are interested and able to donate, please visit Sophia's fundraising page and donate.  All donations, of any size, are greatly appreciated!  And if you can't donate, please consider sharing the link to our fundraising page and maybe someone you know would like to help Sophia reach her goal!  If you would like to walk with us this year at the Buddy Walk, mark the date above on your calendar and I will keep you posted about meeting up at Celebration Plaza and walking around the canal! 

Seriously, who can say no to this cute little face? :)

Stress Study

Last night Sophia had another sleep study.  I'm not even sure what number it was, we've done so many.  Needless to say, I know the routine and I can feel the stress building up for days prior to even going in. 

Sophia had just had a sleep study last November I believe, and her results came back as having mild to moderate sleep apnea.  So we were referred to a pulmonary doctor and to our ENT.  We were given the options of doing nothing at that time, and having another study done in a year.  Or we could try some medication, Flonase and Singular I think it was.  Or we could experiment with a CPAP, continuous positive airway pressure.  I looked into both options, 2 and 3, and decided that we would just wait it out and see where we were in another year.  No one really seemed to think that things were that severe right then anyway.  Then a week and a half ago we had a follow up appointment with another pulmonary doctor, who was the actual doctor who initially read Sophia's sleep study results from last year.  She seemed to think that the CPAP was the way to go, seeing as how Sophia's sleep apnea would probably not improve, but most likely get worse. 

According to the National Down Syndrome Society, there is a 50-100% incidence of obstructive sleep apnea in individuals with Down syndrome, with almost 60% of children with Down syndrome having abnormal sleep studies by age 3 1/2-4 years.  The overall incidence of obstructive sleep apnea increases as children grow older.  Individuals with Down syndrome have a higher incidence of obstructive sleep apnea (OSA) mostly because of their anatomy.  Some of those factors include: low muscle tone in the mouth and upper airway, poor coordination of airway movement, narrowed air passages in the midface and throat, a relatively large tongue, and enlargement of the adenoid and tonsil tissue.  Enlargement of the tonsils and adenoids is one of the most common causes of OSA in children, which is why Sophia had hers removed 1 1/2 years ago.   

Like our doctor told us, it's important to get Sophia's sleep apnea under control, sooner rather than later, because it can affect things like cognitive abilities, behavior, growth rate and even pulmonary hypertension (abnormally high blood pressure in the arteries of the lungs.)  So she suggested another sleep study, which continues to be the best standard test from which to evaluate sleep disordered breathing and sleep apnea, but with the CPAP this time.  The CPAP consists of a mask that fits over the individuals nose and forces air into the airway to open it up and allow better airflow while sleeping.  Needless to say, I didn't have high hopes for this CPAP gig working out. 

First off, I've noticed more and more lately that Sophia is so much more aware of her surroundings and she recognizes familiar places and knows when "bad things" are about to go down.  She gets herself all worked up and I can see the anxiety building up as I'm trying to convince her to get out of the car, and that it's really not going to be THAT bad.  Last night, she knew.  She knew when we were driving there.  She knew when we pulled into the parking lot.  She knew when we got on the elevator.  She knew when the woman called us back to our room.  And boy did she know when they came in to get that party started. 

She cried.  She was scared and nervous and anxious.  She was definitely expecting the worse case scenario to happen.  But she never once tried to pull anything off her head or face.  She didn't squirm or try to get away from me.  She just cried and pouted a little and shook her little hand and head at the women telling them "no" when they were about to do something she didn't want them to do.  But most of all, she was brave.  Just like she always is when we have to do things like this.  I can see the fear written all over her face, because Lord knows this baby girl has had her fair share of medical
stuff  to go through.  But she always puts on a brave, big girl face over all that fear, and gets the job done. 

Sophia, with all her sleeping gear on, besides the CPAP

 

CPAP in place, getting ready to count her sheep

Sleeping.  Under all that stuff, she is actually sleeping.

 

 After she was all geared up and ready to sleep, she apparently fell asleep in good time, 3 minutes.  CPAP pushing air in and all.  I was amazed.  I couldn't believe she was actually wearing that thing and not trying to rip it off her face.  I thought, at that moment, maybe this isn't going to be so bad.....Fast forward about 30-40 minutes.  I asked someone if I could get a blanket, and she said sure, she'd bring it in to me.  Well when she brought it in, she so kindly was going to pull out my bed from the comfy chair that was sitting in the corner (yes, that is total sarcasm there :) and she woke up the beast!  All hell broke loose at that moment, and continued for the next 30-40 minutes :/  I ended up having to have the woman in charge of the CPAP, turn it off so I could get Sophia back to sleep.  With luck, she fell back asleep and we decided to try our luck with the CPAP again.  After all, that was the whole reason we were there.  But as soon as that air hit her nostrils, she flipped her lid, for the second time.  That's when I had to call it, death of the idea of the CPAP, 10 pm.  We removed the mask and all that time and Sophia slept like the little princess she is until about 5 am.  Then we spent the next 40 minutes up and down, her sitting up in bed, me putting her back down onto her pillow.  Around 5:40am it was closing time on the sleep study and we gladly grabbed our sh*t and got the heck out of Dodge. 

Now we wait, 7-10 business day, for our results.  I'm not sure where we will go from here, since the CPAP wasn't in use for 95% of the sleep study.  But we do go back at the end of August to see our pulmonary doctor and discuss the sleep study in person and hopefully come up with a plan that will work, for everyone involved.   

Ssshh

I'm sitting in my home, in complete silence.  Something I've done most of the day.  I can't remember the last time it was this quiet and peaceful.  The longer I sit the more I realize I miss the noise.  It's just not normal for things to be....this quiet.  But I definitely needed this time alone.  I needed to regroup.  Take a little time for myself, to refocus and get a little bit of my sanity back :) 

I feel like every day is just another day of going through the motions.  We wake up and I get breakfast.  We play, we fight, I clean up messes.  I get lunch.  We play, we fight, I clean up more messes.  I fix supper.  We play, we fight, we get baths, I clean up more messes.  Then, if we're lucky, we get to sit down, relax, and enjoy each other.....if we're lucky. 

Like so many parents I'm sure, I've dedicated my summer to making sure my kids have the most fun they possibly can.  I am always trying to think of new things for us to do, scheduling play dates so that they have a friend around to have fun with, because we all know siblings aren't any fun to play with!  At least not in my house!  I wake up, or get woke up, every morning and am instantly in charge of entertainment.  Meaning, I am THEIR entertainment.  It's a lot of work entertaining an almost 7 year old and a 4 year old, who don't ever seem to enjoy the other ones company.  But that's parenting, right?  I'm definitely not trying to say I'm the only burnt out mom who needs a break!  We all need a break from time to time, or else we might end up breaking. 

I'm so thankful that we have people in our lives to take the weight off our shoulders every now and then.  It's good for us, and our kids too!  I know they are having a blast this weekend and I'm just about ready to get my feet wet again and see my beautiful girls, who I love so much!

Making Friends

I worry about my kids having friends and being accepted.  I worry about them getting picked on for who they are, and not for who the other kids think they should be.  I worry about them feeling left out and alone.  I worry about them sitting at the lunch table all by themselves or walking around the play ground solo, because no one wants to hang with them.  I worry that they won't get invited to things and wonder what is wrong with them that the other kids don't like.  I just worry that my kids won't be included.  And the truth is, I've always worried more about this when it comes to Sophia.....but at least today, I'm not worring about this at all.

Sophia is VERY sociable.  This girl has NEVER met a stranger.  In fact, she gives me a little anxiety from time to time when we are around new people, because she is very, in your face, hey what's going on over here, hope I'm not invading too much of your personal space, kinda girl.  Some people love that about her, and well, some people don't.  And honestly, I guess that's okay. 

A few weeks ago, a little boy in our neighborhood stopped by to play at our house with Jayden.  We've never really played with this boy much and he really doesn't know us that well, except from seeing us walk around the neighborhood and he knows Jayden from school.  But they were playing in the front the yard and Sophia was out there trying to play too.  I don't know if the boy thought Sophia was more of a baby or what, but he really didn't have any interest in including her in their play.  He wasn't really mean, but he wasn't really friendly either.  Well Sophia wasn't going to put up with that nonsense!  So she dug into him a little...like dug her fingernails into his arm a few times and then proceeded to toss a couple rocks at his face, just to let him know that she was not going to take any crap from him.  Of course I couldn't let her think that was okay, so she got put in timeout, but inside I was thinking, "You go girl!  You show that little punk that he can't push you aside and not let you play.  He done messed with the wrong girl!"  Even though I wasn't happy that she got a little "violent," it made me happy that she stood up for herself!  She can't vocalize her feelings right now, so when she felt like she was being excluded, she let him know, the best way she knew how (but not the most appropriate way) that she wasn't okay with how he was treating her. 

I think that some kids meet Sophia and think that just because her language isn't really there, that she can't play like they can, or that she can't understand what they are saying.  It may aslso be hard for them to figure out how to relate to her without being able to verbally communicate with her.  It can definitely end a friendship before one ever starts, because little kids just don't get it.  Hell, some adults don't even get it!  It takes a little bit more time on the other persons part to stop and really get to know Sophia.  She might not be able to say, "HI!", but she can wave and smile and take you by the hand and show you what she wants to play.  Or if you initiate the conversation first and ask her to come do something with you, she knows what you're saying and can proceed however she feels like following through.  But it sometimes just takes a few more seconds to really "hear" what she is trying to "say."

Today, we were at a family graduation party, full of people that really didn't know us that well.  A little anxiety always kicks in in situations like this, because again, I'm always worried that Sophia's lack of giving people their personal space, will rub someone  the wrong way.  But I loosened the reins a little and let her work the room and everyone was so welcoming of her.  In fact, she was once again, the center of a lot of the attention.  But it wasn't just the adults that were so great with her, the kids that were there were awesome too!  They were all mostly middle school and high school aged kids, but they were drawn to Sophia.  They accepted her into their circle.  They played with her and helped her when she needed it.  Of course none of them could really understand her, but that was okay.  They stuck with her and held her hand when she grabbed for theirs and followed her to wherever she took them and sat down when she patted the chair or picked her up when she held up her hands.  They were patient with her and they were sweet and caring and she felt that from them.  She knew that she was accepted and that she was wanted in their circle of fun.  And she was good to them, because they were good to her. 

One thing that I love about Sophia, is that she is a take it or leave it kind of girl.  You treat her good and show her some respect and she will pour her good little soul right back to ya!  But if you treat her like she isn't welcome, girl will spit in your face, stomp on your foot and walk her little booty on over to the next best thing, before you can even get a word out!  Of course Sophia's feelings get hurt by people's actions, but she knows when other kids aren't treating her right and she usually won't stick around to be dissed on, unless she's coming back to throw a rock at their face :/  I am gaining more and more confidence in Sophia's abilities to make her own friends, because the truth is, there are kids out there who are going to stop and "listen" to her and take the extra time to really get to know her.  And for the ones who don't.....at least right now, Sophia has no time for them anyway!      

Happy Mother's Day...a day late

"Becoming a mother is one of the most wonderful and most scary things in life!  It makes me appreciate my own mother and all the difficult decisions and sacrifices she made in order to try and give me the best upbringing.  Thank you mom!" - Malin Akerman

Growing up my mom was a pain in my a$$.  Always looking out for me and telling me what to do and not do.  Always thinking that she knew best just because she was my mom.  She worried about me all the time, even though I totally knew what I was doing and always had everything in my life under control.  She'd always hug on me and tell me she loved me, even at the most embarassing times.  She always wanted to sit down and talk and nose into my business.  Sometimes I felt like I just couldn't get away from her and her hovering ways......And now, I get it. 

If I thought my mom was a pain in the a$$ growing up, my kids don't even know what they are in for!  I love my girls more than anything or anyone else in this world.  They mean everything to me.  Even though I know that I can't protect them from everything out in this big world, I sure want to try.  I want to be there for them, always.  Even when they think they don't need me.  I want to know what is happening in their lives and be someone they can turn to and talk to about anything.  I want my kids to know that I love them, unconditionally, no strings attached.  I want my kids to look back in 30 years and say, "now I get it."

"All that I am or hope to be, I owe to my angel mother." -Abraham Lincoln

I remember growing up and watching movies on Lifetime with my mom and just watching her bawling her eyes out and thinking, "what in the world is wrong with her?  It's just a movie!"  And now, I do the same things.  To see the hurt and pain that people experience every day, really hits home as a mother.  You look at things and think, "what if that happened to my kid, what would I do?"  or "what if that happened to me, what would happen to my kids?"  Every decision you make no longer affects just you, it affects other people.  Little people that you have such high hopes and dreams for.  Little people that you only want to do the best by.  Little people who are counting on you to make sure that they are happy and healthy and grow up to do something wonderful with their lives.  It's not just about you anymore.  When you step into that role as "mom", it's all about someone else. 

"A mother's heart is a patchwork of love."

"Mother love is the fuel that enables a human being to do the impossible." -Marion C. Garretty  

After having children of my own, I love my own mother in a way that I never had before.  I know now, that no matter how old and wise (HaHa) I get, my mother is always going to look out for my best interests.  She will love me and mother me till the day she dies.  Because that's what mom's do.  They love their children, through and through, forever. 

"A mother holds her children's hand for a while....their hearts forever."

"A mom's hug lasts long after she lets go."

I can always feel my mother's arms around me and her kiss on my check.  I just know that she is always here with me, even when I can't physically be with her.  I love you mom!  I hope that your Mother's Day was great! 

SWING!

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Softball Star

Due to a rain out on Monday night, last night was Jayden's first offical game as a softball player.  Seeing as how the girls only had one practice as a team before their first game, they all did very well, but definitely have lots of room for improvement, but so much potential :) 

 

The rules this year are a little different than what we are use to, with t-ball being the only other thing she has played.  Each batter gets 5 pitches or 3 swings before they are considered out.  3 outs and the team changes from offense to defense.  There is a maximum of 7 runs per inning, then you change again.  Games are 60 minutes and no new inning will start once the time has expired.  Instead of stopping after one base, you run until the ball is back in the pitchers circle or you are tagged out.  The score is kept, but the focus is more on skill development, rather than winners and losers.  Even though it is coach pitch, each team has a "pitcher", as well as a catcher this year. 

 

Jayden played centerfield, first base and shortstop last night.  She also had a hit and scored for her team.  I am so excited to see her improve this season and really become comfortable with the game and how it is suppose to be played.   

 

   

Jayden before the game :)  (when we showed up the other team we were playing had hot pink shirts....I'm sure Jayden would have quit right on the spot if she had to wear a hot pink shirt! LOL :)

 

Number 1...that's my girl :)

On second base  (seriously, can you imagine Jayden having to wear one of those shirts! :)

Coming to third

SCORE!

Shortstop

Playing first base