12/30/12

Mama's Present


I know I have complained about it before, but for the last year (ever since my computer crashed) I have been without my beloved Photoshop.  I haven't found a suitable replacement and it has literally pained me to edit photos. 

All of this changed on Christmas.  Daddy gifted me Adobe Elements for Christmas.  I think it is supposed to be a little more user friendly than Photoshop although so far it seems more complicated.  I was in heaven messing around with it last night.  I think I almost have the hang of it.

Not having my photoshop has made me reluctant to take pictures with the good camera.  Now I can go back to doing what I love!!  And maybe since I will be using the DSLR again I might even have a decent shot of Buddy every once and awhile.  He is quick!

I gave the blog banner a long overdue update last night.  This is the picture from our Christmas card.  Not a perfect shot but I think it is as good as it gets with so many people!!

Look for lots of new pictures soon!

12/29/12

Christmas Do Over


The scene in the picture above was a true miracle.  Why a miracle?  Because December 23rd all hell broke loose over here.  Baby started throwing up at bedtime.  Bunny was whining and not letting me put him down which progressed to a pained cry and then he threw up.  I had planned to wrap all the kid's presents that night so Bunny laid on a towel in the middle of our bed...asleep... surrounded by presents while I furiously wrapped.

On Christmas Eve we had to cancel plans with family and lay low.  After the kids were in bed my elf got to work putting together the big presents. 

Baby threw up on Christmas morning while the rest of us opened presents but then swore she still wanted to go to Grandmas.  After we got their permission to invade them with our germs we packed everything up.

Baby wore her new jacket and some shorty shorts and nothing else.  She was quite a fashion statement.  She pretty much laid around the whole day.  Not the most memorable Christmas.

In the midst of all that, the boys both were sick and very clingy and Buddy is getting molars.  He has been waking up multiple times every night.  It has been hard.

I wish we could have a do over and make everything magical and perfect.  At the same time...I didn't let it ruin our Christmas completely.  None of us were in the hospital, we have a home, we have lots of loving family.  Things could have been much worse.  I had to remind myself of big picture perspective many times these past couple days.


Today everyone was back to normal.  I missed Bunny's charming personality so much.  I could not leave him alone today.  I wanted to savor all his smiles, giggles and silly faces.  He is not even a glimpse of himself when he is sick.  It's good to have him back!!


The kids spent the day playing with all their new gifts and Daddy has two weeks off so we have plenty of time for a do over.  We plan to make the best of it.







12/18/12

My Life in Pictures

Brother Love

Our Tree

Our Christmas festivities got off to a slow start this year as I was working on a major data entry project in the beginning of December.  Every spare second I had went to that never ending project so it wasn't until last week until I finally got my decorations up.  Although the house did look a bit more festive it was missing the most important piece...the tree.

Daddy and I weren't sure what we wanted to do.  I was afraid of getting a real tree because I didn't want Buddy pulling it over on himself.  When the girls were this age we just wedged a tree between some couches and they just admired from a distance.  Buddy is a boy.  That would never work with him.  In his short 21 months of life he has taught me that NOTHING is safe from his curious hands.

Daddy suggested a fake tree but I told him that the ones that are convincing are just too expensive.  I am a real tree girl and I knew if we spent that much money on a fake one he would never let me get a real tree again!



In the meantime, the girls and I made a fun felt tree so that they could decorate it.  Buddy loves it.  I can tell who has been decorating by how the ornaments are placed.  Buddy likes to take them off.  Boogie has them all perfectly arranged and Baby likes to group them by color.

I formulated a plan that we could just wait until Christmas Eve and then surprise the girls on Christmas Day with a little real tree all decorated.  Daddy agreed and we had a plan.

Then he called me the next day and said his boss had a brand new nice fake tree he wanted to give us.  It was too tall for our house so I was hesitant because I didn't want to be stuck with a huge tree in our garage.   Daddy convinced me and on Monday he was home because of the rain so we put the tree up.  We just tweaked it a bit to make it fit and I have to say.....I am almost team fake tree now.  The lights are gorgeous and it took 2 seconds to put up and I haven't had to vacuum up pine needles once.


The girls were SO excited when they saw it.  We waited until the boys went to bed and decorated it.  We all sang Christmas carols and honestly....it didn't take away from anything that it wasn't a real tree.  Another plus that I can use my Swedish tree skirt which was impossible to use with a real tree because of the whole watering issue.  I do miss the tree smell though! 


The whole tree thing was a good reminder for me.  Part of the reason I didn't want a tree was because I didn't want Buddy to be touching it and destroying it all day.  I didn't put enough weight on how much the girls would miss out if we waited until Christmas to get a tree.  It has even put a spring in my step to see those white lights out of the corner of my eye during the day.  So...lesson learned...sometimes we have to take one for the team.


I did in fact chase Buddy away from the tree all day.  But that's okay.



12/17/12

A Good Cause



Have you heard of the company Sevenly?  They are a company that partners with charities to raise money and awareness for that charity.  Each week they have a different cause and they sell shirts, sweatshirts etc and $7 from your purchase goes to help the charity.  In the picture above I am wearing my first shirt I bought from Sevenly which was for Forward Edge International.  Among other things, Forward Edge International helps keeps girls from being sold into prostitution in Nicaragua.  Having young girls myself, I couldn't help but do something.

I wish I could buy a shirt every week.  The charities they partner with are amazing.  But I have been waiting for my second purchase to be a charity relating to down syndrome.  When I saw the familiar almond shaped eyes in Sevenly's new Facebook post today I jumped.


When I discovered that the charity was Reece's Rainbow I cried because thanks to Lily's blog I have spent hours looking over the pictures on the Reece's Rainbow website.  It breaks my heart that these children have no family.  It breaks my heart that any child has no family but especially these sweet babies with down syndrome.  When I look at all the faces that look so much like my Bunny I feel like those are his brothers and sisters over there.  I wish I could adopt all of them. 

Reece's Rainbow partners with families who are willing to adopt an international child with special needs and helps with fundraising so that those families have less of a financial burden.  It makes me so happy to know that they are getting lots of attention this week and are spreading the word about their work.


Please consider buying a shirt this week or if you would rather you can go straight to the Reece's Rainbow site and donate there.  I myself will have a shirt just like the above picture in a few days. 

12/12/12

Meeting Day

Yesterday was Bunny's 6 month IFSP. For those of you not "in the know", this is where we meet with Bunny's social worker and therapists and look at the goals we set for him 6 months ago and see where he needs more help and where he is on track. Then we set goals we would like to see him doing by the next 6 months.

Bunny and I and his 3 therapists and his social worker crowded into a conference room at the OT center where he receives therapy.  I sat down and was handed my copy of the IFSP and my heart leaped for a minute as I thought "What am I doing here?  I am in a room full of therapists staring at the word DOWN SYNDROME.  How if this my life?" 



It wasn't a sad moment.  It just catches me off guard and takes my breath away at times.  I think it is because even with the therapies and doctor appointments and mean momma bear calls to the insurance company our life seems pretty normal to me.  I don't dwell on the words down syndrome or even think about them and yet it is part of our life.  And sometimes that makes me catch my breath for a minute because it was something I never saw coming.

That truly was just a moment of the meeting...a fleeting thought.  The rest of the meeting I mostly looked around and felt blessed because we have such a great team in place for Bunny.  Our social worker is loving and seems to truly have Bunny's best interest at heart.  I feel like his therapists are my friends and that they truly care about my son and what happens to him.  They WANT him to succeed.

In most of the areas, Bunny scored between 8 and 13 months.  He was 20 months at the time of testing.  I know that could be devastating to some but I knew exactly where he would score because he has a twin brother.  His highest score was in cognition where he was at 17 months.  His teachers all agreed that his willfulness is a factor in every score because if he decided he didn't want to do something on testing day we weren't going to change his mind.

In our state we are maxed out at 3 services a week so we will just continue on as we have been going except for the teachers were all brainstorming ways to change his environment so he realizes that he HAS to work.  I have no issue with that!

It's strange for me to think that we just have 1 or 2 more of these meetings before we transfer to the school district.  I feel like I am just getting the hang of it and pretty soon things will change on me again!

11/18/12

A Beautiful Sight


This morning Baby and I went to church together.  I've missed church and for many reasons we have not been attending regularly but today I felt we needed to go.  Baby was the only willing participant.

I dropped Baby off in Sunday school and walked into the church alone for worship.  I had a form to fill out so I wasn't paying too much attention to my surroundings.  Worship started and as I looked up I recognized some familiar features on a man sitting in the front row alone.  I was trying not to stare but my curiosity would not rest until I knew for sure that he had down syndrome.

As my mind stopped analyzing him and just looked at him I immediately got tears in my eyes.  He was all alone and on the front row and had his hands raised and was worshiping in a way that I honestly have never felt free enough to (I am not talking anything over the top here.  I am just extremely conservative in my worship).  It was the most heart warming thing I have seen.

I quickly blinked back my tears and tried to compose myself but they wouldn't stop coming.  I finally had to walk out and go to the bathroom. 

I felt like I got some strange looks but I wanted to tell everyone.  "No.  These are tears of joy!  That man represents everything I want for MY son with down syndrome.  He is independent and he loves Jesus and is not afraid to show it!"

When I snuck back in to church I chose a different spot so that I could avoid blubbering through the whole service.  I could still catch little glimpses of the man.  I fantasized about stalking him after church but I controlled myself.

I am SO glad I went to church today!!

11/6/12

A Little Hope

I've been really bummed about Bunny's gross motor skills.  I wrote this post a few weeks ago and then had an even more discouraging talk with our PT last week.  Bunny was not being a willing participant in therapy at all.  He would not pull to stand and he would not do quadraped.  He was protesting when we tried out his new Bamboo Braces. (which I LOVE and so does the PT)  The PT was really concerned.

I allowed myself a day to be sad and I cried a lot about it because I hate seeing him get even further behind.  I voiced all my worst fears to Daddy and his answer was that we need to be tougher on him.  He happened to be off of work the next day because of the rain so we brought down all the big stuffed animals, pillows and cushions from our rooms and put them on the floor around Bunny.  Then Daddy played guitar.  Bunny HAD to crawl over things to get anywhere.  When he whined for help and I reached to help him Daddy didn't let me.  Bunny quickly learned and he figured it out.  (I do tend to be a sucker for him but I think the balance between us is what he needs)

video
 (Not his best transition.  He is usually more graceful but it is the only one I have on video)

Then a few days later I walked into his room and he was SITTING UP in his crib!  I have thought for a long time that he could transition to sitting if he just tried and I guess he finally decided he wanted to!  Since then he does it multiple times an hour.  He crawls around and sits up with ease.  It's funny because once he is sitting he still sometimes will get a funny look like "How did I do that?"



He has also been getting into quadraped more.  He was rocking so hard the other day it looked like he might hop like a bunny across the room.  Today the PT had him 4 point crawling with assistance which is something he normally doesn't tolerate (he was wearing his Bamboo Braces which really help his arms!)

I definitely think I am on to something with the music too because if I put music on and then encourage him to stand he will tolerate it if I help him dance.

video


Lastly, he has really been trying to speak.  He has been saying "all done" for awhile now and I finally got it on video.  Today he said "thank you".  He was imitating me but I'll take it!  He says "all done" all on his own when he doesn't like food or therapy.  It seems he learned the phrase that was important to him.  I have noticed a lot of frustration from him when he wants something or needs something and isn't having his needs met so I have been vigilant about getting down on his level and making him sign to me.  I need to get the Baby Signing Times again and start some new words.  He knows "all done", "milk" and "food" and Buddy and I do a lot of signing in front of him but I think that if he realizes he can get things he wants from signing he will be more willing to learn.

I definitely feel more hopeful this week.  I know moms with older kids with down syndrome always say that "they will do it when they are ready" and I guess I am going to have to keep saying that to myself because clearly it is true for Bunny.  And even if the midst of all my worry my boy has met 2.5 of his 3 IFSP goals in gross motor.  We started the process of evaluation today and I was really dreading but when I look at the big picture he is making progress even if it isn't as fast as I may wish.  He has his own timeline and I just have to be patient.

11/2/12

Family Pictures

My mom called me a few weeks ago asking if we wanted to do a family picture session at a local park as part of a fundraiser for her friend's adoption.  I can hardly say no to a cause like that!  I didn't have any expectations going into it because I know that getting all six of us to look at a camera and smile is an impossible task so I told the photographer that natural shots were just fine with me.

The whole time I was just laughing.  Buddy wanted nothing to do with standing still in a huge park with ducks to chase.  Baby cannot pose for a camera to save her life.  But we had fun.  I even got a decent one for our Christmas card (I am not showing that one just yet).  The boys aren't looking at the camera but oh well.  Look at me all planning ahead!

Here are a few of my favorites.  (For some reason Blogger is making them look a lot crappier than they look like in person)

Buddy is not having fun

 Pa throwing Buddy in the air.  I hate it when he does this although he always did it to me and I am here to tell the story.  Notice I am cropped out of the picture.  I'm sure I was making a concerned face.



 Daddy spent the whole day making sure Buddy wasn't running into the lake.





I love that I actually got to be in pictures with my babies.  I am usually the one behind the camera.



Baby insisted on posing with her branch.  Oh that girl!!!


Look at Pa with that double hold!  I love that the boys look so much like brothers in this one. 


Halloween

I am going to attempt to throw up a few blog posts while I am slightly distracted by "Rock of Ages" in the background.  Yes I have heard it is terrible and I honestly try to avoid all Tom Cruise movies but it's hard for Daddy and I to resist the music of our youth (you know...being the old crotchety people we are).  It's kind of my dream..."butt rock" AND a musical.  I'm cracking up because I am loving the musical numbers.  Daddy is rolling his eyes at me.

Ahem...anyway.

I have been really bad lately about keeping track of our days and events.  It feels like days just fly by and then BAM!  we are seconds before an event.  Halloween snuck up on me before I realized that it fell on a Wednesday and none of the churches in the area were having any festivities.  Fortunately, we were invited to a costume party the weekend before so the boys got a chance to wear their costumes for an audience (they don't trick or treat just yet)


Bunny was good about keeping his Yoda hat on.  He tried to take it off when I first put it on then gave up and amused me.

 Brother had no intention of amusing me.  He wanted nothing to do with his hat.


Boogie picked a "Movie Star at the Emmys" costume.  Of course!!!  She looked glamorous and gorgeous as usual.  Baby got invited to Disney on Ice with a friend so she missed the party.

On the actual day of Halloween we decided to head over to my moms and trick or treat there.  People in our neighborhood tend to go ALL out including hanging pirates and Boogie is very sensitive to scary stuff.  My mom's cul de sac has not traditionally been as scary although this year it was the place to be.  A girl in a Scream like mask jumped out and scared Boogie and she vows she will never trick or treat again.  I am going to have to do better planning next year.

At least we got a few good shots before we traumatized her.


 I was really surprised when Baby picked a princess costume because she is my tomboy.  She does make a beautiful princess though!!


She does not take her posing nearly as seriously as sister does as you will soon see!
 

We have a shot just like this from every year since Baby was born.  Baby is goofy or uninterested and Boogie is trying to get a modeling contract.  My girls are so opposite!


 Notice Baby looking at Boogie to see what she is doing.  I wouldn't say she nailed it but she's trying!

Now that's the Baby we know and love!

 I have been waiting for YEARS to put my babies in Star Wars costumes!  So you'll have to forgive me if I took a million pictures.  Bunny rocked his Yoda costume.  Yoda wore skinny jeans right?




 Brother wanted nothing to do with pictures so we had to bribe him with food to sit down next to Bunny.  We even got him to wear his hat.  Then Bunny grabbed it off of his head.  I guess he wanted the spotlight.
 

 He also wanted that food!  Bunny is as quick as lightening when he decides he wants something.  We call him Velociraptor.


He hides his enthusiasm well but Buddy actually loved his costume.  He calls Darth Vader "hoo haa" and was happy to do his impression for his fans.
 
A fun night was had by all...even if Boogie was scared.  She designated herself the candy queen and pulled a chair up to the door and waited for kids to knock.  When she opened it she put on her best teacher voice and said "You may all take one piece of candy".

10/17/12

My Life in Pictures


Found in broad daylight under my babies' slide in the backyard.  I am traumatized because I thought they only hide in dark places.  I now have to neurotically check every toy before I allow the kids in the backyard.  Frightening!!

I Don't Has To


 I am frustrated this week.  I have been feeling really burnt out and I'm sure that that has something to do with my frustration but I can't shake it. 

Bunny has been going through a very stubborn stage with his therapists.  If he decides he doesn't want to do something he will not do it.  Fortunately, as stubborn as he is, he is also very polite.  He doesn't scream or yell....he just locks his body and grunts and gets twisty.  When that doesn't work he gets very charming.  He smiles his big toothy smile and babbles and tries to charm his therapists.

I know that this is normal 19 month old behavior.  I hear "no" from Buddy's mouth a million times a day.  Bunny shakes his head "no" or says "all done". 

What frustrates me is his lack of motivation to do new things.  I finally thought we were making progress with pulling to stand and now he is refusing to do it.  He is also perfectly happy commando crawling and has no desire to try to 4 point crawl.  It's not that he doesn't want to move because he commandos all over the place and loves to explore but he is perfectly content doing it his way.


I am trying everything I can think of to get him motivated to work on things to strengthen his arms and legs.  I pulled out the crawling track last week so he could push his way down.  I took him into the playroom so he could pull to stand at the train table.  We practice the wheel barrow position while he is on my tummy (the only way he tolerates it).  I am just at a loss.  I know he will get there and I know I have to have patience but I just wish I could find a way to motivate him.


I am going to have his thyroid checked.  We are due and I was putting it off because of all his recent hospital drama but I would feel better to rule that out.  I am also going to be vigilant to get some coconut oil in him everyday in case his thyroid just needs a little boost.

Our PT is ordering come orthopedic braces for his feet/ankles to help him not lock out when he stands.  A friend of mine is also going to make him a tummy band so that he has more support and feedback for his tummy.  I hope that these things will give him a little boost and desire to keep working.

He really LOVES music so I've been putting music on in the background when we do exercises.  Tonight I got him to stand for a few seconds and we "danced".  He loved that.  I think I just need to get REALLY creative.

He may have gotten some of his strong will from his extra chromosome but he also got a nice healthy dose of it from his parents.   He has met his match in his mama bear.


I love my little buddy so much.  I just want him to be able to explore his world and participate more with his brother and sisters.  He loves to watch them and engage with them but often gets lost in the dust as they run from room to room.  We will just have to keep chugging along.