Tuesday, July 30, 2013

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? :)

Wednesday, July 24, 2013

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.   

Saturday, July 20, 2013


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!