Wednesday, March 31, 2010

Wordless Wednesday

Peek-a-boo...I see my parents

Whoops...turned the corner too fast when transporting baby and mulch!

Tuesday, March 30, 2010

Can People Tell?

Reading a post at lunch from Finnian's Journey got me thinking...We've often wondered if Sweet Pea's DS characteristics would become more obvious as she grew up and we were pretty certain that they would.  At first, that was a very hard idea to deal with, but now it is just a fact of life.  It appears that it is already happening as in the last 48 hours we have had two separate instances where people have recognized the signs...

1) We were at our local park celebrating another friends 1st birthday on Sunday.  As we were leaving we ended up seeing an older man with DS right in front of us.  He turned around and said hi to Sweet Pea and then said something that we didn't understand, but his mom who was with him obviously did as she responded "no, she doesn't".  After a few seconds my husband and I figured out what he had said and responded, "yep, she has Down syndrome".  The mom was shocked and said that her son could always tell.  He was very proud of himself and gave his mom a big kiss on the cheek.  Turns out that he is 39 years old and his mom told us what a blessing Sweet Pea would be to us even if it seemed hard now.  We thanked her and told her that we were starting to see things that way.  When I told my mom about the encounter later she explained that it might have been the "young boy" that she had taught through the local park system when I was a baby!  His mom would come to the classes and she remembers them to this day.  What a small world!

2) We were at Trader Joe's yesterday and as I was checking out the checker started talking about how her cousin has Down syndrome like Sweet Pea.  She goes on to say how smart she is and how she never had any health problems or anything.  The way this lady was speaking it was clear that she wasn't just embellishing.  This gal really was smart and very typical.  It makes me think that maybe she had mosaic DS or something, but it really doesn't matter.  The point is that she recognized that Sweet Pea was special and wasn't afraid to talk about it. 

I think it will continue to be easier to tell that she is extra special and that is ok.  While I'm sure it will cause some awkward stares from some, I bet other people will be more willing to introduce themselves and share how someone with DS touched their lives.  It's amazing how many people have a link to someone with DS and yet I had not a clue about it before Sweet Pea was born.  Just another example of how Sweet Pea is making me a better person.

Monday, March 29, 2010

Letter to Sweet Pea

Dear Sweet Pea,

365 days ago you made your entrance into this world and nothing has been the same ever since.  I've grown more and more in love with you each and every day and can now truly say that I love you with all my heart and soul.  Don't get me wrong, there are still days that your extra chromosome causes me some emotional pain and anxiety, but without it you wouldn't be who you are.  We still wish that you weren't extra special in the chromosome way because you always would have been extra special even without that extra number twenty one.  But it is all ok and you are doing wonderful!

We certainly didn't expect you to be doing all that you are when that pesky (mommy is censoring her language here) genetic counselor told us that you wouldn't read, write or drive a car.  He set the bar for you way too low and we are lucky that we have met so many other young kiddos with DS to prove him so wrong and to help us learn how to set proper expectations.  You do things at your own pace and in your own way and that just makes you extra sweet.  Your excitement when you accomplish something is contagious just like your smile and laugh are infectious.

You have such a wonderful group of friends that are cheering for your every accomplishment and milestone that you reach.  You are touching more lives than we ever could have imagined such a little girl could ever touch.  You are making your mommy a much better person and I'm so thankful to you for helping me take a fresh look at life and all the joy that it brings every day.  I'm learning to not take things for granted and to enjoy the simple things.  It may sound cliche, but it is absolutely true.  Watching you struggle to reach a milestone that most other kids achieve quite readily makes my heart break, but also makes it that much more glorious when you reach it!  You can do ANYTHING that you set your mind to and don't let anyone EVER tell you differently.  It may take you longer and you may have to work a lot harder, but you can do it and your mommy, daddy, aunts, uncles, grandmas, grandpas, cousins, friends, etc will all be there to help you in any way that we can.

"She sure has an opinion on everything" is getting to be a common statement made about you and that is a good thing.  You get it from both your mommy and your daddy so we shouldn't be surprised by it.  I promise you that I will try to listen to you better and let you take the lead in more ways.  Sometimes I have to be in the lead, I am the mom so you are going to have to deal with that, but there are other times where it isn't important that you do things my way and I promise to try to relinquish control to you as often as I can.  I'm sure you are going to teach me new and creative ways of doing all sorts of things and we both will be better because of it. 

I can't imagine my day without you there with me and I miss you while you are at daycare but know that you are having a fun time with all your little friends.  I'm glad that we have found a daycare that loves you so much because I feel safe having you there.  I don't worry about if you are being taken care of or being loved.  I know you are!

Your a beautiful little angel and we love you with all our hearts.  Don't ever stop smiling and teaching us to see the good in life!

We love you!

Mommy and Daddy

12 Month Marker

Here is what she is doing by her 1st birthday:

Weight: 17lbs 1oz - Lighter than at the 10 month check up, but doctors aren't worried about her.  She has been sick so much the past two months that they hope she will start gaining weight if/when she gets healthy for more than a few days.

Height: 27 1/2 inches

Head: 43.5 cm

Foods: Not much changed from last month...Eats lots of puffs, carrots, sweet potatoes, peas, green beans, chicken, turkey, ham, pears,  pear juice, some bananas, chicken noodle, chicken vegetable, cereal and teething biscuits.  Typically (when healthy) 4 bottles and 2 boobs a day with 3 of the bottles being formula plus 3 meals of food.

Favorite food: Still sweet potatoes and turkey

Favorite toy: Real phones...just waiting until her drool kills one of them

Favorite song: tie between the Wheels on the Bus and the Grand Duke of York

Accomplishments: combat crawling!!!!  She doesn't do it much yet, but she is doing it with her arms finally and I think she will do it more now that she knows she can.  This really started on Sunday so we are so excited!  She also now drinks many meals from a munchkin straw cup, improving on her use of "more" and starting to do a modified "all done" (one hand in the air and often with the bib in it trying to rip it off), loves to play with paper and tissue and napkins and won't immediately put them in her mouth so we can actually let her play with them, eating puffs well but still without a pincer grip, knows how to pull her left arm out of the car seat strap when it's time to come out, initiates peek a boo and holds the cloths up herself (her feet "dance" when she is excited and it's so cute to watch them when the rest of her is hidden) and she will turn pages when reading books.  Successful ear tube surgery and EGD!  Survival of a 107.8 degree fever and parents that were worried sick!

Works in Progress: moving from stomach to sitting (almost has it but normally requires a little help still), two lower teeth are trying to come on each side of her existing two bottom teeth, "giving five" and blowing kisses

Sweet Pea-isms: Still enjoys moms chin as a teething toy and it hurts more than it used to now that she has two real teeth.  It's still too cute to make her stop though.  Mommy will wear a chin bruise as a badge of love. Pants like a dog when she gets excited.

Sounds: Still tons of da and ba and the tongue is not out nearly as far as it used to be.  She also seems to be attempting to mimic our words (all done is the main one).  Loves to put her hands in and on our faces when we are talking or singing.

Facial Expressions: Sucks her lower lip into her mouth (mommy loves this one), puckers up (if only when we were trying to teach her to give kisses)

Sleep: Bedtime is between 7 and 7:30pm.  We are waking her up for a twilight feed before we go to bed but otherwise she sleeps until 5:30 or 6am at the earliest.  Often she will be awake but entertain herself in her crib while her mommy and daddy sleep a little later.  She has a very bad habit of sleeping in on the days that mommy and daddy need to be somewhere early so that they can't take advantage of it.  It's quite cruel, but funny none the less.

It's been a busy month and I'm sure I have forgotten a few things, but hopefully I captured most of them.

We loved spending her first birthday with friends during the day and family in the evening.  She had a great time!  Here are some pictures, but more will be coming as time permits...

Sweet Pea got her very own Rody!!!! Thanks Grandma and Grandpa!

Sweet Pea loved riding on her friends new rocking horse!

Happy 1st Birthday Part 1

Sweet Pea turns one in one hour!  We will be at the pediatrician when the actual time of birth occurs, but I will sing happy birthday again anyway.  Today is a busy day and so I will post a full posting this evening after she goes to bed.  I am still in shock that it has been a year since she was born and this roller coaster ride began.  It's a good thing I love roller coasters! 

I love you Sweet Pea!!!!!

Friday, March 26, 2010

On the mend?

It appears that Sweet Pea is on the mend!  Her temperature has remained just under 100 for most of the day.  She has been fussy, but not too bad.  We didn't give her any Tylenol or Motrin, but we did give her the antibiotics and some homeopathic teething tablets as it appears that she has two teeth coming on each side of her two bottom teeth...her only two teeth to date.  We sure hope something comes in on the top, but I'm good with them being delayed until the breast feeding is over.

We are going to start the ear drops again in her right ear as there was drainage there yesterday and when we spoke to our regular pediatrician this afternoon she thought it was a good idea.  She has certainly been pulling at that ear so we get to deal with the fun of keeping her on her side for at least 5 minutes while the drops hopefully work their way into her ear.  Mommy & Daddy have had to be creative with what is on the bus to make "Wheels on the Bus" last over 5 minutes!

Looks like we are going to have to pass on a 1st birthday party celebration with some mommies that I met during my pregnancy as we don't want to potentially infect the 4 other babies that are turning 1.  It's sad that we won't be able to celebrate our kiddos birthdays all together, but I would feel terrible if Sweet Pea got one of them sick!  Hopefully Sweet Pea will be healthy by her actual birthday on Monday and especially for her party next weekend.

Thank you for all the positive thoughts!  We might actually get a good night sleep tonight...I sure hope I didn't just jinx it!

Feeling Better Today

Quick update...Sweet Pea is feeling a bit better today.  Although it could be a repeat of yesterday where she felt better and then went right back to a full fever.  I'm going to keep a close eye on her, but her temp is only 99 currently so let's hope it stays that way for good now!  She is off Tylenol and Motrin currently and hopefully she won't have to start those back up today.  Last night wasn't too bad after about midnight until 5:30 so that was a nice break for a few hours.

She is definitely not her happy self today, but mommy is trying to keep her content at least.  Her teeth I think are bugging her too which can't be helping anything.  The poor little girl just can't seem to get a break.

Thanks for the positive thoughts!  Keep them coming please!

Thursday, March 25, 2010

It's back...

Sweet Pea was doing much better this morning and right after I called and made the doctor appointment her temperature completely disappeared.  At the doctor her temperature was normal!  We didn't get to see her regular pediatrician because it is her day off, but we got in to see her partner.  He checked her out and she seemed pretty good.  Her throat had some white patches or something so he took two cultures for strep...a rapid one that came back negative and a full one that will come back on Monday.

He explained to me that the fever was likely not related to her cold as it would have appeared the first day or two of the it.  Instead it is probably a secondary bacterial infection of some sort.  He gave us antibiotics so we are back to giving her drugs each night!  We thought we were through with that for a while, but apparently our plans didn't exactly work out again.

Her temperature was good for a few hours and then started to come back.  My mom was watching her and started back on the alternating Tylenol and Motrin regimen.  She was staying around 101 most of the day when on the drugs, but not 5 minutes after I get her home in the evening she started climbing again.  We gave her the next dose of Tylenol and started with the cold cloths again.  The fever never got above 105 and is hovering around 103 most of the time.  Looks like it will be another long night in our house.

Here are some pictures from husband and sister-in-law think it's a wee bit strange that I take photos of my sick child...but come on!  She is still adorable even through her sickness and I want to always remember how sweet she looks.  Strange or are some more...

From early this morning:

From tonight:

Fever Broke!

It's a little after 8:30am and her fever finally broke!  She is now hovering just under 100!!!!  She is babbling and she drank some milk so mommy and daddy are very happy.  We are still off to the doctor to have her checked out, but we should be in the clear.  Thanks for the positive thoughts!

Fever still here

I know people are hoping things are better, but unfortunately not yet.  She fluctuates between 101 and 103.  Looks like we will be heading to the doctor this morning.

Wednesday, March 24, 2010

Fever Freakout

Tonight has been an interesting evening in our household.  Sweet Pea is teething and so we thought her fussiness was due to that.  She had a fever of 101 and Daddy wanted her to have some Tylenol at 6pm, but she spit most of it out, but we hope she got some.  She then fell asleep on me and I was enjoying the snuggle!

Little did I know that things weren't as calm as they seemed.  When she started stirring around 7:15 I got up and changed her diaper and started getting her into her jammies.  She was crying up a storm which wasn't like her and then I thought I saw her shaking, but thought that it just had to be from her crying so much.  I pulled back out the thermometer and was in disbelief when it read 107.8 and redid it immediately..."hi"...repeat..."hi"...again and again.  Ok, I freak out!  I ask Daddy to call the doctor and I call my brother-in-law.  He tells me to do cold cloths and so I do that immediately and she is already stripped down to her diaper.  Pretty soon I ditch even the diaper in hopes of cooling her off that much more.  We get her fever down to 104/105.  Daddy can't get the doctor or their 24 hour help line so he leaves messages.  We then call our nurse friend (thank you again Mrs. M) and she tells us to get some pediatric Motrin so Daddy runs to the store to buy some.  Turns out you can do Motrin and Tylenol together!  Who knew?!?!

We have heard of a cool bath helping reduce a fever so we draw a cool bath and Sweet Pea freaks out when she is put in it.  I just can't imagine that being helpful so I pull her out instantly and go back to the cool washcloth on her head and back and neck.  Mrs. M actually comes over to check in on us...more on mommy and daddy probably than on Sweet Pea, but checks out Sweet Pea to make sure she is looking ok.  All is well and the fever is slowing coming we are in the 103 range.  When the help line calls back we get the advice to draw a regular temperature bath (or just a touch cooler than normal) and put her in it and let it cool down as she is in it so that it isn't such a shock to the system.  Keep up with the cool cloths and alternate Motrin and Tylenol every 3 hours. The bath worked well and poor Sweet Pea just stared at Daddy with a look of "Help Me" and Daddy was just breaking apart inside.

Now we are watching her like a hawk and hoping that tonight goes ok.  She is sleeping pretty well and her fever has just come down to 101 so we are heading in the right direction still.  I have lost all credibility when it comes to not worrying about a 101 fever now with Daddy and he will always win on the Tylenol battle, but that is alright.

Please keep her in your thoughts and hopefully the morning will bring a healthy little girl back to us. Thanks Grandma for being willing to babysit yet again!!!!

Saying It

Another momma just posted Say It and it starts like this: "I remember when I couldn’t say it without choking up. I couldn’t get it out without the heat rising inside of me... I couldn’t say it without feeling like I might crack wide open and my guts would fall out on the floor...."  I loved the entire post, but don't want to repost the entire thing so go check it out if you are interested.

It got me thinking...I can finally tell someone that Sweet Pea has Down syndrome without tearing up MOST of the time now!  It has taken me a year, but I'm getting there!  I went to Target just last night and I was chatting with the parents of a boy who was turning one tomorrow.  I told them that my daughter's 1st birthday was on Monday and that I was trying to find one perfect toy for her.  (Daddy & I agreed to only buy one toy due to our current financial constraints and, in all honesty, she has a million toys handed down from her cousins so she isn't deprived at all).  When they showed me a toy that their son absolutely adored and it was one where the kid walks around with it, I very calmly explained that my Sweet Pea has DS so she is a bit behind.  I didn't even get the pit in the bottom of my stomach when I said it!  That was the first time I was almost ok with saying it!  I still felt a bit sorry for myself and for Sweet Pea, but it was a very small amount.  Progress!!!!

I can remember so many times this past year where I have completely broken down when I had to tell someone that Sweet Pea has DS!  It's been a dreadful thought when I run into someone that I haven't seen in a very long time and that would have no idea what our past year has been like.  I always fear that my eyes are going to start to water and once that happens all hope is lost for me controlling myself.  I think that is why I've lived in a little bubble for most of this year.  It was easier than dealing with reality.

Sweet Pea is almost one though and I need to start celebrating the wonderful little girl that she IS.  Not what is slower about her and all the minor medical issues, but what a joy she is and what joy she brings to her daddy and me.  When people ask me how she is, I need to say that she is great!  Ok, maybe that is a bit of a stretch since she normally has a cold or something, but at least say that she is doing really well and we are very proud of her, because we are!

I just read a great quote that was on Sweet Ella Grace's blog (who just happens to have Sweet Pea's birthday, but a year earlier)...don't know who said it, but I like it!
“Life isn’t the way it is suppose to be. It’s the way it is. It’s how you cope with it that makes all the difference”.

And this Down Syndrome Creed I picked up from Therklesen Bliss:
My face may be different but my feelings are the same. I laugh and I cry and take pride in my gains. I was sent here among you to teach you to love, as God in the heavens looks down from above. To Him, I'm no different His love knows no bounds; It's those here among you in the cities and towns, that judge me by standards that man has imparted, but this family I've chosen, will help me get started. For I'm one of the children so special and few, that came here to learn the same lessons as you. That love is acceptance, it must come from the heart; we all have the same purpose, though not the same start. The Lord gave me life to live and embrace, and I'll do it as you do, but at my own pace.  -author unknown

We love you Sweet Pea and all that you are and all that you do!  Even when you frustrate us, we still love you!!!!!

Tuesday, March 23, 2010

Ear Plugs Advice Needed

Sweet Pea had ear tubes placed 2 weeks ago and the whole process was really smooth.  We just had her follow up appointment with the ENT today and the great news is that the ear infections and fluid are gone!!!!!!  We had noticed an uptick in her babbling and so we had high hopes that all was good, but it was definitely good to hear it from the doctor.  He gave us this ear putty to use as ear plugs.  He molded it into a Hershey kiss shape and then put it in her ear and pushed it down.  It stayed for maybe 5 seconds!  When I expressed my concern he very casually told me that we would have to put the ear plugs in and then I should have my husband put his hands over her ears while we put her head under the faucet to wash her hair.  What?!?!?!  This man is a very sweet man, but he must be losing his marbles!  What happened to fun bath time?  What happened to swimming?  What happened to being a kid?

I'm looking for any advice that I can get at this point.  Are there any tricks that you know of to help keep the darn things in so that I can wash her hair?  She doesn't have much now, but I really hope that will be changing eventually!

I've been reading that swimming may not be an issue without the plugs as long as it is not more than 2 or 6 ft under the water because the pressure can cause more water to enter the ear at that point I guess.  Soapy water though is a consistent no no.  So maybe we can still enjoy a little pool in our backyard this summer, but have to figure out something for the bath?

Any advice will be greatly appreciated!

Inspiring Video

I found this on Quinn's Crusaders and I just had to share it with you. It gave me a lot of hope and makes me look at having another kid in a much more positive light than I often do. I tended to think that Sweet Pea would be a burden on another child, but most likely she will be more of a blessing and positive impact than a burden! I need to start looking at the good that can will come from her being in our lives.

I hope you enjoy it!

Sunday, March 21, 2010

Getting into Sitting

Yep, you guessed it...Sweet Pea got from laying down to sitting up this afternoon!!!!  I tell you, every time she has a playdate with her friend who was born just a few days earlier, she learns something new!  She wasn't even playing with him today since it was his 1st b-day party and he was a bit busy entertaining all of his guests.  But somehow, she still managed to learn something since not more than three hours after we are back home she shows her daddy and I her new trick.  I thought that daddy helped her, but he didn't!  It was amazing!  She almost did it again, but her arm gave out on her so hopefully she will pick it back up tomorrow.  I am so darn excited and proud of her!

Here is a video of a new game that Sweet Pea started to play with her daddy today.  I was lucky enough for her to play it with me too!  She is just too darn cute!!!!  It gets even cuter towards the end so fast forward if you aren't up for nearly two minutes of video.  Enjoy!

March 21 - World Down Syndrome Day - Post 3

Today is 3/21...World Down Syndrome Day...that's right...because of the three 21st chromosomes that those with DS have.  I hope you enjoy this final installment of the DSALA 21 quotes for 21 days...

Day 16:
When I mentioned that my new baby - about three weeks old
had Down syndrome, he smiled at me and said:

"Really? That's cool!"

Nothing anyone else could have said to me at that time
could have made me feel any better!

Submitted by Melissa Skavlem,
Quote by unknown bagger at the Cincinnati Kroger Store.

Day 17:
As he knelt down to give his dog the last morsel of meat he whispered,

"bon appetite"

Matthew Von Der Ahe
Age:  9 years

(Whoes parents were told once in an IEP that Matthew was uneducable.)
C'est la vie, non?

Day 18:
To her critically ill grandmother
 "Gram, God is preparing a room for you in heaven."
Then a few minutes later,
"How long does it take God to prepare a room?"

Christine Young
Age: 37

Day 19:
 "No, I love you more!"

Response to mom when she says she loves her.

Camryn Sarah Duncan
Age: 7

Day 20:
"I'm done with the extra chromosome,
 I want the doctor to take it out."

Mom responsed, "Well okay, but you will have to go to a different school
and Casey Powell won't be your best friend anymore."

"Okay then, I'll keep it!"

Blair Williamson
At age 19, now 30 and Casey is still his best friend.

Day 21:
"When I grow up I be God."
Mom explains he can't be God.

"Okay, then you be God.
When I grow up I be Rock Star!"

Jonathan Psaute
Age 5

Thursday, March 18, 2010

Pity Party is Over

Thank you EVERYONE for your wonderful words of support and encouragement and for making me feel like I'm not a terrible mommy for feeling this way!

Is it possible for two days to BE any more different?  (Yes, Crazy Aunt R, that is a Chandler style quote)

I definitely woke up this morning feeling better (emotionally and physically) and Sweet Pea greeted me with a huge smile and a big hug.  We certainly enjoyed our morning together before I had to go to work and it was a wonderful way to start the day.  Grandma says she had a great OT session today with a little whimpering, but no real tears!  How thrilled was I to hear that!!!!  And when I picked her up from daycare and saw that she had bananas in her cereal,  green beans and 3 full 6oz bottles...well...I was just blown away!  We've been trying to get her to eat bananas for a few weeks now since they are one of the 3 fruits she is now allowed.  Hasn't happened until today!  Yippee!!!  Then the best part of it all was when we sat down to eat dinner, I pulled out a jar of chicken noodle baby food and scooped way more out than I thought she would eat...then heated it up too much and so I added more from the jar to cool it down faster so then there was probably 4 times what I expected her to eat in the dish.  Well, she ate all of it and then finished the rest of the jar too!  And had a bunch of puffs and even tried some of our homemade baked french fries!  She loved them!  Yes, she is mommy's little girl after all!  She was in the best mood and making some hilarious faces so I had to try to document some of the fun we were having...

Does anyone know if antibiotics will kill an appetite?  Today is her first day off drugs (besides the Prevacid) in weeks and that is the only thing that I can think of that might be helping our cause.  If so, then I'm thrilled!  If not, well, I won't argue and I just hope that her desire to eat lasts more than one day and that we can make up for some lost time.  I'd like her to be at least at her 17lbs 3oz weight that she was at about 8 weeks ago when we go for the 1 year visit on her birthday.  Less than 2 weeks so we shall see!

This morning I got this little clip of Sweet Pea playing in her Circle of Neglect:

I took the advice of Meredith from Chase and More and wrote a list today of all the things I love about Sweet Pea.  I know I'm missing a ton, but not a bad little list to get me through the next tough day...
  • Her can light up a room
  • Her beautiful blue eyes...I'm biased as they are my eyes...and my moms and my grandpas and...
  • Her adorable little laugh
  • Her ability to bring a smile to random strangers faces as well as to all the rest of us
  • Her little hands and feet
  • Her super soft skin
  • How she falls asleep while she is feeding off me at night
  • How sweet she looks asleep on my chest
  • How completely relaxed and at peace she is when she sleeps
  • Her excitement when she is pleased with herself
  • How she stops in her tracks when her mommy or daddy start singing to her even though our voices aren't very good
  • How she loves zerberts when we are changing her diaper and the giggles that ensue
  • How cute she looks when she claps or waves
  • The many looks she can give...the drama queen, the wise old man, the I'm sorry, the pout, the boo-boo face, etc.
  • How she tucks her legs up under her fluffy bum when we put her to sleep on her belly sometimes
  • How she grabs onto her blanket and rubs it against her face as I lay her down in her crib when she is mostly asleep
  • Her fascination with hats on her mommy or daddy
  • How she sleeps through the night when she is healthy
  • How cute she looks in her adorable outfits and anything pink
  • How sweet and cute her babbling is
  • How tolerant she is of taking her Prevacid each morning and how good she was about the ear drops and her antibiotics...poor girl has had to take way too much medicine in the past few months
  • How she can read her mommy and know just when I need a cuddle
  • Her uncanny ability to listen to a doctors orders (they say start pooping...she starts pooping, they say start eating...she starts eating).  We just need the doctor to always tell her...she doesn't listen to mommy and daddy...I can't wait until she is a teenager!  ;-)
Daddy even got in on this and made his own list:
  • I love her smile.
  • I love her laugh.
  • I love her perfect little hands, feet and ears (the outside of her ears are perfect at least).
  • I love girls' clothes, she's so cute in all her pink outfits.
  • I love her shy laugh (where I'm holding her and she turns her head and snuggles into my chest and neck while she laughs).
  • I love that she's happy even when she's sick or uncomfortable.
  • I love that she's gone from a deer-in-the-headlights to a total ham in front of the camera.
  • I love when she reaches for me to pick her up and that I have the power to make it all better, whatever the problem is. That's not going to last forever.
  • I love how unbelievably cute she is when she's asleep.
  • I love that she exists, because that means that I, the man who doesn't like anyone, met a girl who was hot enough, funny enough, sexy enough, smart enough, crazy enough (but not too crazy!), and just all around awesome enough for me to fall in love with and want to go on this crazy adventure with. We didn't get the life we wanted or planned on, but we're going to make the best of it and it WILL turn out great, you'll see. (Mommy teared up again reading hubby really does love this crazy woman)
That's about it for the day.  Thank you again to everyone that was uber supportive and I really hope I don't have another day like yesterday, but I know that my hubby, Sweet Pea and you all will be there for me if I do.  Thank you!!!!

    Pity Party for St Patrick's Day

    St. Patrick's Day is almost over, but I'm having a full on party here...a pity party that is!  Reader beware!!!!

    I really don't know why I'm feeling so darn emotional.  I'm guessing it's PMS, but who knows since that is all screwy too still.  (TMI I know)  But I really am an emotional wreck tonight.  I have been sick for the past few days so that hasn't allowed me to get much sleep, but that is no excuse for how emotional I am!

    I went to our local support group tonight (btw, I love these parents!!!!) and everything was fine and we were introducing ourselves to the speaker and when asked if I have any concerns I just start to lose it.  It's a simple enough question isn't it?  Oh no!  Apparently not for this mom it isn't!  I think what pushed me over the edge was sitting there watching a precious little girl who is just 3 weeks younger than Sweet Pea eating chicken soup and string cheese.  The soup isn't what really gets me (although even that does a bit), but the string cheese does.  Many of you are wondering what is my big issue with string cheese?  Well, I absolutely love cheese!  I should have been born in WI for how much I love cheese (ok, the CA dairy commission is probably mad at me now), but apparently my daughter didn't get the memo.  I've had to refrain from all dairy for the past xx months (don't even want to try to think back as it just makes me cringe) because little missy "might" be allergic to it or it "might" make her reflux worse.  So I can't have it and she certainly can't have it.  Nor can she have any fruits besides pears, bananas and grapes (anyone figured an easy way to feed grapes to an infant), no nuts or seeds, no soy, no shellfish and no apples because those really did seem to make her reflux worse.  Since I'm still breast feeding, mommy can't have any of those items either.  So watching this little girl enjoy her string cheese and chicken soup just really hit me hard.  (See why I think it might be PMS related?)

    So back to the question at hand of what am I concerned about...her weight, her stubbornness during therapies, her potential allergies and the lack of concern that anyone seems to have about it and toward helping us determine if any of these things are even real issues, the guilt that I self impose for me wanting to stop breast feeding by the one year mark so that I can actually enjoy the various parties that we are going to, the guilt I feel for not being able to play with Sweet Pea because I have to work full time, and the list can go on forever.  That is why this is a pity party!

    We are coming up on the one year mark and I really thought that I would have accepted all of this a lot more by now.  I still wish and pray daily that this wasn't our life and doubly that it wasn't her life.  I try to convince myself that we are lucky and that we have a pretty healthy little girl who is sweet and loving.  A lot of the time it works, but not always.  Going to a children's hospital normally helps because you see so many people who really are worse off than we are...not that I like other people to be in worse shape, but you know what I mean.  But then I sometimes just sit back and throw my hands up and ask why us?  Why can't anything for us be "easy"?  I mean, in the last 12 months here is the list of things that have gone wrong:
    • daughter born with DS
    • daughter spent first week of her life in NICU where for a couple of days we weren't even allowed to touch her without being gloved & gowned
    • daughter had a small heart issue (PDA) that resolved itself (yes it's good news, but it was a concern for a while)
    • had to learn all about DS and what therapies we needed to try to get and learn to be prepared to battle with our regional center because of the budget cuts in this state in order to get her the services that she needs (so far we have been fairly lucky in this arena, but we are battling a little currently)
    • had to patch Sweet Pea's eyes and then get glasses when she was only a few months old
    • have regular visits with the GI who never really tells us anything useful it seems, just keep on the prevacid for the next 3 months and she might be ok then...yeah right!  He has already said that a few times.
    • have regular visits to the ENT and finally got tubes installed just last week
    • have never gone more than 4 weeks without seeing our pediatrician due to some infection or weight gain issue or something
    • try to daily do: oral motor exercises, think strategically about what to have her playing with so that she is developing good habits, watching her so she doesn't try to do splits to get from sitting to laying, etc
    • keep a food journal to try to identify reflux triggers (oh yeah this is something that WE came up with, not the stinking GI!  He'd be happy to have us just keep all food out of her diet for the next 18 years)
    • husband lost his job
    • husband almost took a job in another state for fear of not finding something here (we are still looking for that something here that is longer than 3 months!)
    • I almost lost my job but never actually did
    • car issues that cost a fair amount to resolve
    • medical bills that just keep coming
    • medical procedures (MRIs, echos, EGDs, ear tubes)
    • 5 therapies a week and yet we can't find anyone that will do water therapy out here
    • trying to schedule Sweet Pea's feedings because she can't eat right before a therapy session or she spits up during it
    • we know that we need to do so much for Sweet Pea and we feel so overwhelmed at times
    • I'm sick of Sweet Pea not eating consistently and making her mommy and daddy worry that she isn't growing and gaining weight
    • I'm sick of Sweet Pea being sick
    • I'm sick of Sweet Pea having to take medications (recently it's been 3 different meds at a time!)
    • I'm sick of crying to all of my dear friends who have been so understanding and loving through this past year
    • I'm sick of people telling me how cute she is or her glasses are and never being able to accept it as the compliment that it is meant as
    • I'm the most sick of not being the wifey that I used to be for my husband.  He deserves the woman he married back and I just haven't found my way back yet.  Sweet husband, thank you for being so patient and understanding!
    • and the list goes on
    In light of many other parents out there who are having to deal with life threatening diseases and far more serious issues, I feel really stupid for feeling so sad for myself, but I still do!

    I read about how so many other moms feel at peace with their situation and I just pray that one day I will feel the same way.  I know I will...I just hope that day comes sooner than later.  I'm not good with dealing with the guilt that I feel for not loving her 200%.  I'm her mother for goodness sakes!  If I can't love her with all my heart and soul then how is the rest of this cruel world going to?

    That's it...I'm done.  Pity party of one is closing down the bar in her own way tonight (no, no alcohol was consumed although that would make this more logical too).  Thanks everyone for listening and I look forward to waking up on the right side of the bed tomorrow and giving my sweet little girl a big hug and a smile (can't kiss her since I'm still sick and she is finally healthy) and seeing that everything will get better and I just need to handle things one at a time and stop looking so far into the future.

    Love you all!

    Wednesday, March 17, 2010

    Favorite Posts

    Another old post that was never published...

    I'm going to start sharing some of my favorite posts that I've come across so that others might enjoy and learn from them as well as I can easily find them again! :-) There is so much information out there and it's amazing what some of my fellow DS blogging mommas have written! I find I don't have time to write much these days, but I do try to keep up with what they are doing:

    From To Love Endlessly
    From Happy Jack
    From My Little "Son-Shine"
    Down Syndrome New Momma:
    Welcome to Our House

      Wordless Wednesday

      Sweet Pea loves to cuddle with Mama Bear:

      Very dear family friend from WI was great entertainment for Sweet Pea:

      Some videos of Sweet Pea attempting to combat crawl or to grow in length...not really sure which she is aiming for:

      Monday, March 15, 2010

      Sensory Bag!

      Thank you Patti at To Love Endlessly for the great sensory bag!  You can read all about it here.

      We are so excited to test some of these out with Sweet Pea tomorrow!  Thank you again Patti!!!

      March 21 - World Down Syndrome Day - Post 2

      Here are more of DSALA's 21 quotes for 21 days...

      I have to be honest here...reading some of these made my heart sing while reading others made it sink.  It's still hard for me to think that Sweet Pea won't have a "typical" life.  I just hope with all my heart and soul that her life is one that SHE truly enjoys.  Things are definitely going to be harder for her and her Daddy and I would do anything for that not to be the case.  However, that is life and we are continuing to learn to deal with it.

      Day 5
      "Michael do it too!  Yes I can!"

      Michael Chambers
      Age: 5 years

      Day 6
      Steve was addressing a class for Special Ed Teachers at Azusa Pacific University. As a guest speaker, and his opening line was...

      "Hi, my name is Steve Vaughn and people say that I am Mentally Retarded, but I am Down syndrome!"

      Steven Vaughn
      Age 47 at time of quote

      Day 7
      When Sara voted in her first election she was asked how she voted.  She answered...


      Sara Layman
      Age: 20 years

      Day 8
      At the end of an excruciatingly non-productive session with her speech pathologist, and mom at wit's end because she simply didn't feel like cooperating today, she finally blurts out...

      "So... what's the problem?"

      Angelica Trujillo
      Age: 5 years

      Day 9
      When asked if he had enjoyed the whole grain pasta at dinner...

      "It was like a party in my mouth!"

      Kevin Ewing
      Age: 28 years

      Day 10
      "We... ought to love... one another"

      Eric Carter
      Age: 6 1/2 years

      Saying and signing his Bible Verse at Awana Club at Church.  He remembers his verses longer than may of his typical peers.

      Day 11
      "When I look into the mirror I see a wonderful, beautiful face looking back at me and I know I can tackle everything!"

      Lauren Potter
      Age 19 years

      Lauren plays Becky Jackson on the Fox show "Glee."  She is scheduled to appear on two up coming episodes: "The Power of Madonna" currently scheduled for 4/20/10 and "Home" not yet scheduled.

      Day 12
      James wanted the dollar amount for filling his lawnmower gas cans divided in two.  When asked "What do you mean?" he answered...

      "You know, mathematics!"

      James E. Coleman
      Age: 51 years, going on 52

      Day 13
      During a private art lesson when her teacher tried to help, Yasmine admonished her with her finger and said...

      "I am the artist and you are the teacher!"

      Yasmine Harrison
      Age: 9 years

      Day 14
      “Down Syndrome means that you learn slow and it is very hard to keep up I know I have been there as I was growing up. I had a lot of help with my family and their support. I had tutors to help me to achieve my goals.  So can you because I believe in you. YOU CAN DO IT with extra support or your family and friends. They can help you make your dreams come true and never give up. Go For Your Dream and achieve."

      Andrea Friedman
      Age 39 and proudly going on 40

      Day 15
      "I do job training at the Marriott Hotel at Warner Center.  I do cleaning windows, gym and in the kitchen. I like the food at the Marriott.  They have good lunch!  Soon I will finish High School. I would like to be a zoo keeper."

      Adinan Shrek
      Age: 20 years

      Wednesday, March 10, 2010

      Very Successful Day

      Today went great!  Thank you everyone for the positive thoughts because they worked!!!!  Sweet Pea got the ear tubes put in and had the EGD performed!  The anesthesiologist was wonderful!  He met with us and he listened to her lungs and confirmed that they were clear and so even though she has this wet cough, he said he would still give it a try.  The plan was to try the mask and see how she started reacting.  If it wasn't going smoothly or she started coughing to pull the plug.  If things were going smoothly then he would proceed with putting a breathing tube in which was needed for the EGD.  The priority was to get the ear tubes in and if the EGD was able to happen great, but if not, we were fine with that too.  We were thrilled that he was on the same page!  Some anesthesiologists wouldn't have even attempted it and with her being sick so regularly he understood our desire to want to try.  Yippee!!!

      The ENT was only able to put the smallest ear tubes in so it is likely that we will have to repeat the procedure in about 4 months, but it could be more or less.  We will have to wait and see.  He said there was a lot of fluid in both ears that he suctioned out.  He thinks she should be able to hear a lot better now so we can hope that her speak can start picking up!  That is our hope!

      The GI gave us pictures from the EGD and although the esophagus and stomach are a bit irritated, it isn't bad by any stretch.  That makes us all feel better.  He wants us to continue with the Prevacid which is no surprise at all.  Oh, and the best news of all...regarding the artery that is pushing in on the doesn't look like it will cause an issue with solid foods!  It doesn't push in very much and he doesn't see it throbbing which he said was a good thing.  I can't believe that I almost forgot to share that piece of great news!

      Here are some pictures from the day.  She was such a good patient!  She had a much easier time coming out from under the anesthesia this time.  Probably because she was only under for about an hour as compared to three hours last time.  She had blood drawn before the procedure and she was really good for that.  The labs showed her white blood count was a little low so they gave her some antibiotics while she was under, but I don't really know what having a low white blood count means.  I will be asking her pediatrician about that at the one year checkup.


       Daddy enjoying some playtime with Sweet Pea:

      Waiting for blood draw:
      Mommy playtime:

      Post Procedure snuggle time (do I look happy or what!?!?!):

      I love the looks that Sweet Pea gives sometimes.  She is certainly a character and she had all the nurses and doctors wrapped around her little finger very quickly.  We are so proud of how great she did during the whole thing and are just thrilled that we were able to get them both done today!

      Tuesday, March 9, 2010

      We're going for tubes tomorrow

      The ENT thinks we can probably get tubes tomorrow and they will just use gas sedation, but it is very unlikely that we will get the EGD.  We may get nothing, but hopefully we will get tubes.  We have to be at the hospital now by 5:30am!!!!  That is insane, but we will do it.  Keep your fingers crossed!

      Sunday, March 7, 2010

      Videos and then some

      Not much to update you on this past week.

      Therapies went ok, but not great.  She really loves her infant stimulation session and Ms. Kelly let us borrow her Rody for the week.  Sweet Pea played on one months ago and loved it and she still loves it.  It's hard to get a picture of her on it since I have to help her stay upright, but you should get the idea from these shots.  It's an inflatable horse that is great for working on balance...and for playing.  We want to take a little air out of this one and get it so that it is the right height for her to sit with her feet flat on the floor.  Haven't done it yet so probably won't, but that is what we were thinking of doing at least.

      PT was the typical fight, but at least it started off ok.  Here she is sitting on a stool that her PT brought:

      That picture reminds me of something we don't have her in metallic blue biker shorts (a la 1990).  Those are called Hip Helpers and they help her to keep her legs together because the legs are sewn together to the knees.  They make it so that she can't do the splits to get from sitting to laying.  She has started doing that more so we are trying to break her of the habit.  The other benefit of these is that it forces her to keep her legs straighter when she is sitting so it works the core more.  To see what I mean, sit on the floor with your legs bent and knees sticking outward...pretty easy right?  Now sit with your legs straight out in front of you...harder.  We didn't leave them on during much of the therapy session, but we do need to try to remember to put them on her at other times.  It's been so cold this week that we haven't been very good about it since you can't wear pants over them. 

      Sweet Pea is still a bit sick so we are switching meds tonight in hopes that we can kick this cough in time for ear tubes on Wednesday.  I'm really not holding my breath, but any positive thoughts you could send would be great!

      Here are a few videos that you might enjoy...

      If you didn't know, Sweet Pea has become a bit of a drama queen and every once in a while she will put her hand up to her forehead and get this forlorn look on her face.  I was mimicking her and she got the biggest kick out of it...

      This is her just laughing again at Mommy trying to be a circus monkey and keep Sweet Pea entertained...

      Daddy was making Mommy laugh here and Sweet Pea was being a good sport about it all.  Try to excuse the background noise.  We thought of muting it, but it's just not the same without the blah blah blahs.

      Maybe it's wishful thinking, but I think that Sweet Pea has really gotten the sign "more".  It's not perfect...but it is definitely there.  Do you agree?

      I'll keep everyone posted on the surgery or the postponement if that is what ends up happening.  I'm really hoping not, but we shall see.

      Thursday, March 4, 2010

      March 21 - World Down Syndrome Day - Post 1

      In honor of World Down Syndrome Day our local Down Syndrome Association (DSALA) is publishing "21 quotes in 21 days by 21 people with Trisomy 21 on what it's like to have Down syndrome."  I'm not going to post them daily, but I'll group them and try to post them weekly.

      Quote 1:
      "She has Down syndrome just like me.
      You sure are lucky!"

      By: Christine Young (age 37)

      Said to a family that included a toddler with Down syndrome at Disneyland,
      the Happiest Place on Earth. 

      Quote 2:

      "Dad, what are taxes?
      Why are they taking money from my paycheck?" Nick Heukrodt (age 26)  
      Clerks' Helper at Gelson's Market, Calabasas, CA 
      Who pays all taxes and union dues.

      Quote 3:
      "Mom, remember be patient.
      I will do it, I learn, be patient."
      Jarold Martinez-Ghazarian
       Age: 8 years

      Quote 4:
      "Can I say one more thing really fast?
      I am here to prove people with disabilities
      can have a normal life and live it
      and that's what I am here to prove"
       Brent K. Banford
      Age: 27years
      Brent spontaneoulsly made this remark to the judges
      after his audition for the TV reality show
      It was aired on May 28, 2008.
      By the way, Brent is a pretty good dancer too!
      I hope you enjoy them!  I get a kick out of them.

      Monday, March 1, 2010

      Happy 11 Month Birthday!

      Happy 11 month birthday Sweet Pea!  She didn't really have a birthday this month because there wasn't a 29th day, but we still can celebrate it.

      Here is what she is doing at 11 months old:
      Weight: 17lbs 1oz with clothes on...yes, that is less than at 10 months
      Foods: Took out all citric acid and even apples the past 2 weeks to try to help the reflux and it seems to be working, but it could be the decrease in quantity too...time will tell.   Eats lots of carrots, sweet potatoes, peas, green beans, chicken, turkey, pears,  pear juice, some bananas, teething biscuits
      Favorite food: sweet potatoes with turkey
      Favorite toy: still the musical star
      Favorite song: Wheels on the Bus
      Accomplishments: clapping, waving hi/bye, banging objects together, rocking on all 4's while I say Rock A Baby, drinking from a straw, dumping containers of toys out, taking objects out of containers, kneeling when on our lap with arms pushing up on chest, scooting backwards (even though she wants to go forwards)
      Works in Progess: eating puffs (little finger foods for babies that easily dissolve so that they don't choke if swallowed whole), signing "more"and combat crawling
      Sounds: da mainly but a few la and ba's...all with tongue outside the mouth
      facial expressions: fish lips, lip smacks (not often)
      Sleep: we wake her up or she wakes herself up for a twilight feed between 9:30pm - 11pm and then normally sleeps in until at least 6am and sometimes closer to 7am!

      Sweet Pea is still recovering from her latest sickness.  She got new meds today from the doctor and we hope that her appetite comes back soon.  So far she has actually eaten more today than in the past few days so we are hopeful that she is turning a corner.  She slept fairly well last night with only waking up 3 times.  Even through all the not feeling good she has still been a love and joy to be around most of the time.

      Here is video of her moving ever so slightly forward...using her toes mainly.  You will see that Kodi is a bit too "helpful" and will come to Sweet Pea instead of making Sweet Pea come to him.  He loves his little girl!  It will be interesting to see how their relationship changes as she starts chasing him around the house.  I think he will love the attention knowing him!

      Mommy and Daddy love you Sweet Pea!  We hope you feel better really soon!!!