Priya Lynn is 2!!!

This is a picture of Priya at her Party this weekend.  The week leading up to her birthday she would randomly exclaim  "Priya's Birthday Party!!!" usually with a Tinkerbell invite in her hand.  She loved it!  More on that later. 

We've had a chance to keep a sheet of notes the last few weeks of all the cute and different things Priya does regularly these days.  We want to remember what a feisty spirit she is in our lives right now.  So here's the list we came up with... although it's not complete, it's a nice snap shot.

Priya Lynn at 2 years old: 

• She has impeccable manners.  She hardly ever has to be reminded to use them and often goes to extreme measures to make sure people understand that she's grateful.  She even greets us with a, "Nice to see you again!" when we get her up in the mornings.  That's something she just picked up from our interactions with friends. 
• Our favorite manner however is, "G-wel-come!"  She loves to say, "You're welcome" after you thank her for anything and even when you don't.  There is always a G at the beginning and a spike in her voice at the end of the phrase.  Cutest. Thing. EVER!!! 
• She walks up and down the stairs like a boss. 
• She is a very affectionate little girl.  She loves to love!  My Mother pointed this out to me as she was returning Priya from an overnight stay with them.  I've really noticed it ever since.  I've often taken for granted how willing Priya is to give soft gentle reminders that she loves you.  Hugs, kisses, cuddles (which she actually calls "cuddles") and whispered or yelled "I Love You...(Momma, Papa, Grandma, Porter, Daddy, etc)"  She's a lover! 

• She doesn't take naps most days.  We just lost them somewhere along the way.  She still goes down for naps every day and occasionally she'll sleep.  More often than not she gathers up some books, toys, or her favorite ice cream kit from her kitchen, piles them up in her bed with her and plays.  She doesn't see this as a violation of the rules.  Nor do I.  I've started calling it quiet time so she doesn't feel confined to her bed.  Little smarty pants.  It's worked just fine for us because she has just added that extra rest on to her night time hours which makes 14-15 hours.  I will never complain about that!  Her behavior doesn't suffer and so I don't really care. 

Sleep deprived due to teething-- not happy about it

• She is quickly learning her ABCs with her brother.  She has a ways to go but she can recite about 50% of the alphabet in order and if she's looking at the letter she can tell you what sound it makes.  As we go through our ABCs each day I always have to pause at E while she repeats several times, "*sigh* Oh! Cute Elephant!" something about that card just melts her little heart. 
• Fine motor skills are a strength for Priya. 
  
• She speaks in complete sentences.  It really blows me away.  Several months ago Aaron wrote this one down because she was only 19 months old and it just didn't seem possible but he swears it happened, "Daddy look those cute baby birds are flying!"  She speaks with very advanced logic and understanding of vocabulary and language structure.  We've always thought this was a gift her Heavenly Father blessed her with so she could enrich her brother's world with words.  And she certainly has increased his vocabulary. 
• Now above I said that Priya is affectionate and that is true, but it's very much on HER terms.  If you ask for a kiss or hug she will have to ponder your request before responding yes or no.  Usually she responds by leaning her cheek towards us to kiss or her forehead.  Let's hope she keeps this habit up in her teen years with boys! 
• The girl can EAT!  We haven't found anything that Priya isn't willing to try 3 times and she likes everything.  Occasionally she'll turn something away because of texture but only certain days.  She's also a very messy eater.

• Priya and her brother Porter are BEST FRIENDS!!!  Making me feel like I have arrived as their Mother.  They entertain each other, care for each other, read together, play all day long and my life is so much better because of it.  I can't help but get caught up in the little moments between them as they go through their day together.  *Honesty Disclosure: they can still fight like little tasmanian devils but it doesn't happen much.*
  
  
  
  
  
  
• To go along with the best buddy's above she waits for the bus to come in the mornings to pick up Porter.  She waves and says, "Bye Bus."  Porter just got a new driver who is an older plump joyful man who has a full long white beard.  She now says, "Bye Santa, love you."  Yeah, it makes me smile too! 

"Bye Bus"

She was saying to me, "Where's Porter?  I miss Porter."  Mommy just isn't as fun. 

• She has a set of go to conversation gap phrases like: "Huh?" she drops her chin, raises her eyebrows and lift her hands in the air with the palms up.  The other thing she does a lot is, "What?!"  She does this to avoid questions or conversations she'd rather not participate in.  
• The girl can sit and work on puzzles until you interrupt her.  She knows all of her colors and is a very patient learner.  She's fine to sit and think about problems, a skill I think she get's from her Daddy.  She is starting to count but only get's 6,7,8,9 right consistently.  Not sure how we got off with the first 5 numerals.  
• She can identify triangles, squares, stars, hearts, and circle shapes. 
• She HAS to dance during the end credits of every movie and will drag you into the party, no excuse will get you out of it. 
• We blame her for anything that goes missing.  She's very curious and because of that she just picks everything she can reach.  She manipulates it, studies it, and then walks off with it.  Several items are still missing. 
• Every night after tucking her into bed she says, "Mommy stay.  Mommy, Please, Stay."  To which I always reply, "Mommy can stay 1 minute."  That's enough for her.  She just likes to know that I'll listen when she asks. 
• One of the things she says in the morning is, "My hair is EVERYWHERE!" It's usually out of control.  Her hair has remained in finger ringlets.  It's darling all the time and if you recall from Porter I kind of adore messy bed head so we let it be.  I do it a couple times a week and it's cute then too. 
  

•  She's a girly girl in so many ways.  She loves jewelry, clothes, all things princess and pretty things.  She has a sense of her own style. 

3rd outfit change of the day

• Priya desperately wants glasses like her big brother.  Every time we go to the eye doctor she has to try on a dozen different styles. 

• She doesn't seem to care for the cold.  Our spring like weather was interrupted by a 3 inch blanket of snow one night.  When Priya woke up and saw the snow she said to me, "Snow a mess Mommy!  What happened?"  She spent some time bundled up in a blanket that day. 

• She likes to sing and picks up lyrics to the chorus lines pretty easily.  Her favorite song is, "Try" by Pink.  She'll sing it randomly through out the day. 
• Her favorite movie is any Tinkerbell movie and Sofia The First (which she refers to as Princess Priya). 
• One of the silliest and most delightful things about this girl are her facial expressions. They never cease.  See for yourself: 
  
  
  
  
  
  

  

  these first 3 were taking in a 2 minute time frame

  
  
  
  
  
  
  
  

  

  She was embarrassed by her parents head banging when we took this. hehe

• She still loves her books! 

• She is determined, strong willed, and persistent; all things that will serve her well in this world.  At times it can be a trial for me as her Mother.  But she's becoming more respectful and I in turn more patient.  We meet each other half way. 

she didn't want to leave the Minnie chair 

• It is a rare thing for Priya to stop talking.  Even when you ask her to stop,the sheer will power that requires is written all over her face and at best she can last 2 minutes without using her voice.    Even when she's by herself she's labeling things, thinking out loud and just a goin'. 
• Priya says her prayers very willingly each night and has started kneeling with me to do so.  I often peek and just want to scoop her up in my arms cause it's so cute!  (Porter lacks the trunk strength to do this so it's new to us.) 

These days we find it hard to remember life before Priya.  She's such a special person and has a significant place in our family.  I don't know what we'd do without her.  We just think she's the prettiest, smartest, kindest little thing :-)  I am rightfully biased though. 

I know this for sure, we thank God for her every night and our hearts are full of gratitude for the joy this little Miss brings into our lives. 

We love you baby girl! --Mommy, Daddy & Porter

p.s. Porter says, "Pound it!"

I couldn't pick which I liked more so you get both. 

The Results

*SIGH* 

So... the results are good, very good, the best possible in fact.  This is great news!  

Now I will tell you that I was not very happy about this when I first got the news from the doctor.  I have spent the last 6 months of my life worried, anxious, and baffled  about my Porter Ray to the point that we had him go through a surgery to try and get answers to why he has been so miserable and sick.   The answer to those questions are answers a doctor would know what was going on with a typical kid right away.  Porter has been holding his bowel movements, until he makes himself miserable and very sick.  Can you imagine controlling your bowels for over a week until your body responds in a negative way?  The very thought of it makes me uncomfortable.  Go ahead, take a moment and laugh. :-)  My mom did when I called her and said, "Everything in my life comes back to poop and pee!" That's an exaggerated statement but there's a lot of truth in it.  If Porter were able to communicate that it hurts for him to go potty we never would have been consulting with a specialist to try and figure out what was wrong with him.  As things are right now Porter isn't able to tell us that it hurts and so we went down this path. If Porter didn't have Down Syndrome we wouldn't have been so worried.  I initially felt like the whole thing had been a waste of time and money.  Our doctor, however, reassured me by explaining that my concerns were valid he was as convinced as I was that something wasn't functioning properly in Porter's body. Based on the facts the people with Down Syndrome are at a high risk for many, many GI problems and so we kept looking.  The positive side of putting Porter through this procedure is that there were 16 biopsies done and lots of images taken that were assessed and analyzed. 

 I no longer need spend anytime wondering if he has allergies or enzyme deficiencies --
 HE DOESN'T. 

 I no longer need spend time worrying that his body is not absorbing or responding to his diet well--
IT IS!  

I NO LONGER HAVE TO WORRY! 

 HALLELUJAH!

 (I'll have to adjust to that, right there ^^^ because I have been worried about these things for... years!) 

We have some difficult work ahead of us as we try to ease Porter's mental anxiety and physical pain around going to the bathroom, but the doctor helped me come up with a plan and I can work with that.  I also now know if A and B happen then put a teaspoon of MiraLAX in his juice and I'll get my happy, compliant and playful Porter back.  

Information is POWERFUL and I'm grateful for it.    

Surgery {check}

Porter just after arriving home and wanting his all time favorite thing... Television.

The last thing Porter ate before his 24 hour fast...a tagalong.  He knows how to make us proud.

Here's the brief version shared with me via Aaron since I didn't go into the hospital today.

Porter was a fart for his pre-surgery  exam because he knows nothing fun happens with a doctor around.  His Dad took him all the way back so he would have a friend when they put him under.  Porter's oxygen levels stayed around 100% after anesthesia, showing us once again that having his adenoids removed has indeed improved his ability to breath adequately.  He woke up very unhappy but he woke up!  He was able to leave after only 45 minutes in recovery, a new record.  Previously we've spent 4-6 hours waiting for his oxygen levels to stabilize.  This improvement did not occur to us until everything was happening, we are grateful.  The poor boy is dealing with post anesthesia symptoms like a headache (he said, "hurt" a very difficult word for him so we know it must be significant) and nausea.  The procedure has him bloated since they pumped him full of air and other problems that are not blog appropriate :-/  There were a few minor concerns found but until the biopsy results are in we won't know what the next step is to help ease his pain.

The big picture he did better then we hoped!

Thanks for all the support and prayers.  Special thanks to Randy for going to the hospital in my place and to my Mom for coming to be with me to distract me.  We love you guys!!!

Porter has Surgery Tomorrow

If you haven't heard Porter will be having an endoscopy and colonoscopy tomorrow.  The procedure itself is low risk.  Porter has done pretty well with anesthesia in the past but there have been some bumps he has faced that individuals with Down Syndrome often do.  We've been doing our best to keep him healthy and so far he has remained so.  They'll have to put him under a strong general anesthesia tomorrow and that's our biggest concern.  We hope he'll respond as well as he can.  It's not a big scary kind of surgery, but as parents we always worry.

This doesn't get any easier the more ya do it.  I just finished submitted all of Porter's paperwork online and I have all the prep work in place.  We'll wait for the call confirming our surgery schedule later today but he most likely wont go in until afternoon.  We'll have to make him fast all evening tonight and all of tomorrow.  That's the longest this poor boy has ever had to be kept from eating and it goes without saying we are nervous about making him so uncomfortable.  I'm am so worried.  I was wide wake last night thinking about my little guy.  The older he gets the more I worry about traumatizing him by willing passing him off to strangers and watching them walk away from us.  Making things harder, I tested positive for influenza B (your good ol' regular flu virus) on Friday and have had to stay locked up in my room for the past 3 days to try and keep Porter from getting sick.  Unless I get A LOT better by tomorrow I wont be going into the hospital.  I just can't live with the idea of getting an already sick child sicker, but just the thought of not being with Porter tomorrow makes me cry.  Being away from him the past few days has just made my anxiety worse.  We've been working towards this for over 6 months so I am trying to keep the big picture in my mind of why I started this whole process and I am trying to put my doubts aside for the hope that we can help this little cutie feel better.  I pray that he'll be safe, he'll be strong, he'll be comfortable and that he'll know we're always there for him.

All prayers and positive thoughts are greatly appreciated!

p.s. y'all rocked those socks!  I'm excited to collect the masses of photos we received of your socks.  We know this little guy is so loved!  Thank you from the bottom of my heart! 

3:21 World Down Syndrome Day

Tomorrow Morning I will pull out our 3:21 T-shirts that Grandma Nec ordered us and we'll be clad in our DS pride attire celebrating this life that has chosen us and the blessing that our  son Porter Ray is.

Last year I did a post titled Why We Celebrate.  This year Aaron and I are co-authoring a list of 21 ways that having a child with Down Syndrome has changed us.  I'll be putting a tag on each item so you know who wrote it because this experience is unique to each of us so we don't have the same feelings but they certainly are similar.  It's probably pretty obvious because he's a guy and I'm such a girl.

Sporting some Granddad Fashion

Having a Child with Down Syndrome has changed me by...

1. teaching me to finally allow myself to acknowledge and understand that perfection lies in imperfection. --meg
2. giving me greater tolerance and love for people with disabilities.-- aaron 
3. helping me shake off and let go of the hurt this world can do. -- meg
4. opening my eyes to scripture.  Like this story: Help Thou My Unbelief... Christ helped parents of Children with Special Needs during his time on earth.  I often listen to talks about parenting and find myself thinking, but it's different with Porter.  I believe that Christ will strengthen me and my son as we travel this path together.  I believe it is a reasonable possibility to imagine Christ walking with someone who had DS.  If not then I know He does now and loves everyone even if they have extra chromosomes or are the parent of a special needs child.   --meg 
5. learning to appreciate small milestones and simple progress. --aaron
6. opening the doors of Heaven to me as I have asked and in return I've been guided.--meg 
7. giving me hope in Humanity.  Porter shows me that the majority of people are good and they are a powerful influence. --meg 
8. showing me sign language is cool!-- aaron 
9. bringing me back to my true self.  Taking care of Porter in addition to the typical responsibilities of motherhood forces me to work on myself.  I have learned that caring for myself is necessary so I have more to give not only to him, but everyone. - meg
10. forcing me to be more out going because people are drawn to him and want to talk with us.--aaron
11. giving me unwavering belief in God and His Plan.  I trust it. - meg
12. (an addendum to 11) I was raised to believe in God and while I think that is part of the reason for my constant faith, I also believe this to be a defining quality of my spirit.  I was sent to earth with this wiring.  I do trust that Porter is a huge part of God's Plan for Me, but that doesn't mean I don't question my Heavenly Father or at times feel distant from my God as I experience the pain, frustration and sadness that parents of children with special needs face.  All it means is that I can not ever turn completely away; these past 4 years have taken my strong roots and woven them deeper and wider. -- meg
13. showing me that you can't always believe what Doctors tell you. - meg
14. educating me about things I might not have learned about otherwise.  Like how an eye exam works, or seeing how blind my wife really is, seeing a heart and learning how it works.--aaron 
15. giving me the opportunity to work on forgiving others.  Friends and strangers alike have said some very ignorant things.  4 years ago I got so hurt by it but now I let it go. - meg
16. stressing me out!  Mommy stress is very universal, but when you've got a child with lots of health/development/emotional/schooling etc. issues it is multiplied.  The blessing in this is learning how to manage stress... I'm not there yet.  Maybe one day.  - meg
17. Acceptance- (a ditto to Aaron's #2) Porter has taken away my intolerance for people who are or believe or behave or choose differently than me.  I'm now painfully aware of how intolerant I was as a youth and young adult.  Yay, for progress! - meg
18. eliminating the word Retarded from our vocabulary.  Neither of us has said it since before May 31, 2009 the day Porter was born. -- aaron & meg
19. allowing surrender to my illusion of "control".  I no longer believe in, "My life is supposed to be...", "By that time we will..."  "If things go according to plan..."  I still plan things but not our lives.  I'm more patient in the unknown and put control where it really belongs...with God. - meg
20. showing me that my son is just as COOL as any other child! - aaron and meg
21. giving me LOVE!  Love does not fail.   Love is in the acts and also felt.  Love is not always spoken.  Love from Porter is unconditional and eternal.  Having a child with special needs is at it's very core about the same exact thing it is with any Parent and Child...it's about LOVE!!!  - meg

HAPPY WORLD DOWN SYNDROME DAY!!!

If you want to do a little thing to show support for our Porter wear mismatched socks, take a picture and post it somewhere.  If you do would you tag me in your post so I can show him the pictures.  We love and thank you all for the constant kindness you give to our Porter, Porter!!! 

Breaking or Growing

This is the BEST moment from this month! 

The picture says it all. 

Life right now has me overwhelmed and that has left me a mess.  I keep thinking I'm going to break.  I keep reaching for strength and hoping to find positive thoughts about everything we've got going on.  After we had children I simplified my life a lot because I enjoy being home and it helps me be calm.  The last few weeks have reminded me of  college life stress and I have been fighting it because it's so not what I want.  Resisting it has only made it worse.  I feel like it's a perfect storm and everything happening at the exact same time. I'm not there yet but my hope is to make it through without going crazy.  I know I'll have to let go of doing things as well as I'd like. Just trying to breathe through it and have a little faith. 

One that note: Aaron is now a member of the Elder's Quorum presidency.  My meetings that Aaron used to complain about are nothing compared to his now 2 a week meetings.  I've already seen the blessings of having Aaron serve in this role.  I'm grateful Aaron is able to support one of our good friends Nate as he takes on such a large and new responsibility in our ward.  

Aaron took me out to use my tickets to Chitty Chitty Bang Bang that he gave me for Christmas.  I was as giddy as a 5 year old in a ice cream store.  It was so much fun! 

Playing with Mommy 

I took the pic below during the Binkie Wars (tired, grumpy girl) and I'm happy to report that we have successfully navigated those waters and she's now napping and sleeping just fine without her binkie.  Yip, Yip, YIPPEE!   

Porter got a stomach bug and I set him up for a sick day. 

Is there anything a Stay At Home Mother loves more than a napping child?  Pretty much adore this boy. 

You know Porter is sick when he falls asleep at random.  I took this to send to Aaron, we were cuddling during one of his favorite movies and for him to crash was a shock. 

The next few pictures are from a birthday party we took the kids to for one of their friends.  We showed up and their parents told us their two oldest had been fighting over who would get to play with Priya.  It was awesome to watch their faces when we showed up.  It was at a warehouse full of bounce houses, needless to say the kids had a great time! 

Priya had two mini mommas all night. 

Occupational Therapy:  Porter is much more of a sensory kid than I thought and now I'm just trying to get our household stocked and organized for helping him cope.  From this day at therapy it became obvious to me just how much he struggles with this.  We tried these different products that help people with sensory processing disorder and Porter turned to goo, just look. 

I was so nervous he was going to fall on his head. 

I loved that he was flipping through the Toys R Us catalog while eating. 

Party in the play kitchen! 

More unhappy sick Porter.  Have you noticed there has been a lot of that lately?  We scheduled him for an explorative surgery on the 26th in hopes of getting answers to what has been making Porter ill. 

Tantrums have arrived...I had forgotten just how much work it is to have a 2 year old and she isn't even 2 yet.  I am doing my best setting boundaries and she's testing them constantly.  She is seriously such a smart and good girl, yet that doesn't stop her from testing me.   Wouldn't trade her for anything! ...most days... ;) 

She insisted on wearing her dress up out so I'm trying to tone it down and I took her to target.  I think she's pretty cute. 

She's such a helper

Young Women's at our house and look who's right in the middle of it! 

My brother Landon got married and for the first time in a long time I did my hair down and realized how long it has gotten.  I need a cut.  Never mind the bags under my eyes. 

The bride was incredibly beautiful! 

These are from our most recent trip to the Zoo:

The kids loved the new bat exhibit and it totally creeped me out!  The Zoo in the winter time is just awesome!  Lots of animal activity and not many people.  

I just giggled when Priya laid down to observe the Sea Lion.  

You know you are a parent when you make your dessert in these cups! 

 Gotta love a man that helps with the laundry! 

After a year of physical therapy I have "graduated".  I got approval to start running again but extremely slowly.  The other thing I'm not looking forward to is re-learning my stride.  The fastest way to learn...RUNNING BAREFOOT, fun right?   My therapist mentioned these shoes but he and I both have made fun of runners in them.  Might have to eat those words.  I really don't have time anyways so we'll see if running even happens.   

Aaron and I are registering with a group of friends for the Electric Run in September.  I'm so excited!!!

It's early, early Spring in Utah so we're finally getting outside!  I {heart} winter but I'm so excited to see it go! 

Today was the first day we were able to go out back in the yard and we are loving it.  

We're doing our best to keep Porter healthy before his surgery because of the extra risks that people with Down Syndrome have when they go under anesthesia.  He's staying home from school, we're staying home from church, having Aaron change clothes when he gets home from work, I've canceled all therapy appointments, playdates, etc.  Since I'm Porter's caretaker I'm also staying away from people, meaning no Young Women's (it's terrible timing and the hardest thing I've done in a long time, but family has to come first) and we are hoping we can keep Porter's lungs healthy enough to avoid any problems when the procedure rolls around. 

This reminds me, we experienced a true miracle in our family this month.  Our nephew Logan was born with a very rare heart defect.  He's had a very hard time the first 6 months of his life.  We actually got our germ free plan from them because Logan's mother has been able to avoid all illness this entire winter, which is amazing considering just how hard our community was hit this winter.  Logan went into heart failure and went through emergency heart surgery to save his life.  It is hard to think about without tears coming to my eyes.  He's the most beautiful child you've ever seen and we are so grateful for the way he came through the surgery better than his doctors expected.  God is GOOD!  We are looking forward to seeing Logan improve and hopefully avoid more problems in the future.  We are so grateful!