Wednesday, June 30, 2010

New Trick's

Well, we have been working on waving 'hi' and 'bye' for sometime.  Last night we had a break through during therapy and Jack was doing it non-stop.  He's been doing it sporadically the past couple weeks, but now he is realizing how fun it is and how much attention he gets from it.  Here was his "hi" this morning:
He keeps his little arm straight and it goes straight up to the sky with no movement...my husband says it reminds him of certain dictator in Germany back in WWII...not good, but Jack's is adorable!!

We have started a nightly tradition that sometimes carries into the day or morning, but every single night before bed, we read "SO BIG!"
And this is Jack's impression of "SOOOO BIG!!!"
Amazing.  He is the smartest kid I know..I tell him that all the time.  I LOVE THIS CRAZY BOY!!!

Monday, June 28, 2010

1 Year old stats and stuff

Well, it finally came. Jack turned 1!  I really can't believe it's been one year since he entered our lives. Time flies by way too fast!

We went to the doctor last week and here are his stats:

weight: 19 pounds, 15 ounces...almost 20!
length: 29 1/8 inches
Head circumference: 43.9 cm

He has grown in all areas since his 9 month check-up and is in the 75th percentile on the DS charts.  He is in the 0-5% on the 'typical' charts.  We have such a little guy.

"So what is he doing? " I hate that question most of the time, but I enjoyed it this visit.

Jack is being completely goofy, happy, and making all sorts of sounds.  He is transitioning from babble to baby conversation.  He knows who mama and dada are.  He imitates movements and sounds most of the time.  He is eating table foods and drinking from a cup sometimes.  He is starting to transition to whole milk and doing quite well.  He holds his bottle/cup well.  He picks up finger foods sometimes, but still needs lots of encouragement there. He is bearing weight on his legs and will stand if he has something to hold on to.  He will get in the crawling position spontaneously, but only holds it for a few seconds.  He will turn pages of a book sometimes, he anticipates tickles and loves peek-a-boo. He shows favoritism over certain toys/books.  He will sit up with support at his hips.  He still needs more strength in his tummy..those 2 abdominal surgeries have really set him back in that area.  He communicates with smiles, laughs, babbles, fussiness and yells.  Yes, he sort of "yells" when he wants your attention...it's pretty cute.  He has been rolling over like a champ both ways for quite sometime and still continues to move throughout a room this way.  When I think of all the things he is doing, I am pretty impressed. It definitely pays to focus on those instead of the things he isn't doing.  Our pediatrician was quite impressed and happy with his development thus far...relief.  I can breathe.

As far as health concerns -
Jack's recent surgery for his hernia has us all a little concerned. It looks like another hernia is starting to bloom.  sigh.  hate surgery...ready to be past this.  Our pediatrician recommended that we see the surgeon again (have an appt in a couple weeks) and that if he does have to have it repaired that we try to wait until he is sitting up unsupported or else this will set him back yet again.  There is a possiblity that it could just be scar tissue.

Jack has also had a few (3 to be exact) unexplained fevers that were pretty high in the past 5 weeks.  They only lasted a day or 2 and no other symptoms were with them.  Therefore, we are starting a daily diary for Jack tracking all his foods to see if it's a possible allergy somewhere and also to track these fevers.  We are also going to get some bloodwork to make sure his red and white blood cells are numbering appropriately.  I am a little nervous, but hopeful that everything will be ok.  We should be getting that done this week and have results a few days later.


Other than that, our goofy boy is doing quite well!

And loving water like it's ...well, water!  These were taken Saturday night:

I think he is going to be Elmo's biggest fan!

Friday, June 25, 2010

Fabulous Photo Friday

Our Magical One:
I LOOOOOOOOOOVE THIS KID!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Tuesday, June 22, 2010

JACK IS 1 YEAR OLD TODAY!!!

Happy Happy Birthday to our sweet Jack.  I can't believe you are one year old today.  I remember this time last year and how eager we were to meet you and hold you and see you.  My life changed on this day a year ago.  My heart exploded with love for you.  Our lives have taken such a journey over the past year and you have taken us to places we never thought we would go, but we loved better and bigger because of you.  You have forever changed your daddy and me.  You are magic. a miracle. a blessing and gift.  We are completely entranced by your smile and the way you live life.  We love you our special, magical one.  Thank you for loving us and for making each day wonderful.  We will love you forever and like you for always, as long as we're living, our baby you'll be.

And of course, there was a party to celebrate.  We celebrated with close friends, family and therapists!
The birthday boy and his crown!  









Papa above sporting the "Tennessee orange"
 I know it's blurry, but it's the only one of all 3 of us that day...so sweet.

Here comes the cake and oh the mess it created :)

btw - the pressure of the birthday cake is something difficult for moms of children with special needs...everyone expects them to dive in and go nuts like most kids do, and as you can see Jack wasn't too sure of it...but he did sort of dive in:
Way to go Jack!!!  I thought he was going to suck off those little fingers!  I think he liked the cake :)  We were very proud of him.


Next...opening presents:
He got so many nice things..thank you to all of you!  We have had much fun playing with them and will continue to.

And here are some photos of the groupies:
Above - Jack with Laura (close friend of mine) and Chad.
Jack with Jill (Speech Ther) and Paul
with Katie (PT) and Doug
with Shannon, our good friend.
Barrett and Aiden - Jack's buddy

And at the end of a long, hot day:

 Playing with Noah
Attacking Papa's glasses

And..

cuddling with Grammy

It was a success!  Very,very hot day for an outside birthday party, but fun nonetheless.  I think next year, we will have it inside or at a pool!  Thanks to all of you who came and helped make it a special day. And to all of you who have been a part of Jack's 1st year and have loved him and us through some hard times and through lots of happy ones - we love you all and are grateful for each and every one of you!

Happy Birthday magical one. We love you soooo much!

Thursday, June 17, 2010

Thankful Thursday

Today I am incredibly excited! My parents and nephew come into town for Jack's Birthday!!!  They should be here by the time I get off work.  I can't wait to sit around the dinner table tonight and laugh and have fun and I am looking forward to coffee tomorrow morning with my mom while holding Jack too! Then on Saturday we will celebrate the most wonderful boy in all the land!! JACK!!!


Yesterday, I was pretty bummed out because I learned that 90% of detected Down syndrome pregnancies are aborted.  I couldn't help but be sad and angry by that. After all, Jack is turning one year old, but he has been alive for much longer than than..he was alive in utero.    I hope and pray over time and through education that people become more aware and that staggering statistic drops lower and lower and lower. And I pray for women everywhere who are getting a diagnosis today, tomorrow, in the future, who feel they have a choice to make...Oh I hope they choose based on love and education.  I hope they are able to see the blessing that life will be..we all know it's hard, but I think we can all say - that the blessing of having a child with special needs far outweigh any and all difficulties. I hope one day I will get to advocate more for our son and for all people with DS.  I know that Jack is changing lives just by his existence and I am humbled to be apart of it.

Completely different note: I came across this - this morning and it made me soo very happy:

http://www.youtube.com/watch?v=Su78LXwMJtY&feature=player_embedded

Please watch and learn more about their story at:
www.monicaanddavid.com

I can't wait to post photos from Jack's 1st Birthday!  Have a great weekend everyone!!

Wednesday, June 16, 2010

Wordless Wednesday

"SOOO BIG!" (in the voice of Elmo)
Drinking from his BIG KID cup :)

Monday, June 14, 2010

DS Walk and growth

We attended our 1st "Step up for Down Syndrome Walk" this past Sunday here in St. Louis. There was a huge turnout...about 5000 I think.   I was a little anxious before we arrived not knowing what to expect.  I anticipated that it might overwhelm me and that parts of it might be difficult.  I am fairly easy on myself and understand that as Jack ages there will be new stages of acceptance and growth for Michael and me.  So, this was one more step and one more area of growth for me.

It was quite possibly the hottest day yet in St. Louis..in the 90s and the humidity was impossible.

We greased Jack up with sunscreen, brought tons of water and hats and got ready for a hot morning.
Our team started to arrive little by little from 9:30 am on.  We were thrilled that so many teachers from Jack's daycare came to support him and our family:
Katie (Jack's PT) and her husband, Doug, also came:
Our neighbors and good friends, the Gregory's (Jamie and Eric, and their 2 children Lily and Will) came as well:

Jack and Lily
Will above, and Jamie and Lily walking here.

We started our walk
And then after walking for about 10-15 minutes, we decided to take a short cut back as the kids were getting hungry (and the adults too!:) )!
We cut through the grass to head back to shaded shelter and hopefully some ice cold water!  They had tons of things for kids to do..jumpy things, slides, face painting, tile painting, etc.  We did a few with Jack, but honestly I was a little overwhelmed and just wanted to sit down to take it all in and hold our baby.

Jack took a little nap..poor thing was so hot.  We ended up removing all his clothes except for his diaper by the time we left!


And here are some of Jack and Katie and Doug and Jack:
And there's nothing like a hot dog and chips to replenish the worn out body and soul:
 As we sat there eating our hot dogs and re-hydrating, I couldn't help but look around to all the families.  So many people were there who love someone who has DS.  So many families were there who have family members with DS.  And so many people were there who have DS.  That last one was the hardest.  I was so happy to see so many other faces like our Jack's, but I would be lying if I said it was easy. I found myself quietly shedding tears by the time we left.  I was crying because I was suddenly scared of the unknown.  What will Jack be like when is 10 years old, 13, 18, etc.  Will he be verbal?  Will he be able to hold a conversation?  Will he be happy? Will he be physically active?  And worse...will he girl crazy?  I don't know how I will cope with that one!!  I also worry about how people will treat Jack.  I have realized in the past year that there are just some rude, unkind people in the world.  I wish I could shelter Jack from all the bad out there.  But I have a feeling that he will handle it better than me and that we will learn tons from him about love.

So why was it hard?  I think seeing the wide spectrum of abilities and disabilities at the walk left me somewhat sad and scared.  I had to stop and remind myself of true happiness and joy and worth.  It's not in what you do or what you look like, but how you love and are loved.  That's what I really want for Jack. I just want him to be loved and to know it and to live in the freedom that it brings. The hard part for me occasionally is the not-knowing things; the stuff that everyone else looks at or judges you  by.  I hope one day I no longer worry about those things. And I wish, right now, it didn't matter.  I prayed this morning on my way to work that we would be prepared for whatever lies ahead and that our family would just grow more in love through the years.  I know next year will be easier and that this is a process.  I won't be hard on myself for having a hard day...those are becoming far and few between as time goes on.  I know other parents/families must feel these same things, right?  I can't be alone in these emotions.  So, I'll take my emotions and move forward...loving our wonderful, precious son.

Thank you TEAM Jack for coming out and celebrating Jack's life!  We are so grateful for his life and we look forward to walking again next year.

My parents come into town this week as we will be celebrating Jack's 1st Birthday!  I can't wait to see them and to celebrate once again.  WE LOVE YOU JACK!  You have changed our hearts and lives forever and have touched so many. We truly love you.

Thursday, June 10, 2010

Inspirational Stories

A local one here in St. Louis:
http://www.globe-democrat.com/news/2010/jun/09/st-louis-woman-shares-brothers-story-having-down-s/

Some "Great Stories" found on the NDSS's website:
http://www.ndss.org/index.php?view=article&com=com_content&id=250%29+&option=com_content&Itemid=140

http://www.ndss.org/index.php?view=article&com=com_content&id=249%29+&option=com_content&Itemid=140

The National DS Society is continuing to publish these stories.  You can find more info here:
http://www.ndss.org/index.php?view=article&com=com_content&id=252&option=com_content&Itemid=146

Hopefully, this is a reminder to all of us who are worrying about the future of our children, that they will do great things.  I can just see our Jack giving an interview  like one of these telling his GREAT story someday.

Happy Thurdsay everyone :)

Wednesday, June 9, 2010

Therapy

I thought it was about time to do a post on the therapy that Jack receives.  He will be one year old in just 2 weeks...I can't believe it.  He has received Physical and Occupational therapy for almost 10 months and Speech therapy for about 2 months.

First, I'll introduce Katie, our PT.  We love Katie!  She is on staff at Childgarden where Jack attends daycare.  She works with Jack at school twice per month and also comes to our home every other week.  She makes Jack work hard and we appreciate her focus and determination:
In PT we are working on sitting up un-assisted, standing flat on both feet, getting in the crawling position and balance.
We have really grown attached to Katie.  She is great at incorporating me into Jack's therapy and is wonderful at showing me things to do with him.  Jack really enjoys her too.  Katie will be moving back to her home town the end of this month, and we are incredibly sad to see her leave.  We can't thank you enough Katie for loving our son and for working so diligently with him.  You are a great therapist and we know that you will continue to bless many families.  You have taught Jack so many things and he has become so much stronger...thanks for you persistence!  We will miss you!!!

Now, on to our OT (Occupational Therapist), Teddie!  Teddie is also on staff at Childgarden and works with Jack in his classroom and in our home.  We just increased Teddie's time to once a week as well.
Teddie always brings all sorts of new toys with fun textures and/or noises for Jack to manipulate and play with.  She focuses on Jack's fine motor skills...picking things up, bilateral play, using his pinchers, mid-line crossing, banging toys together, clapping, picking up food, drinking from a cup,etc.  We cover A LOT in her sessions.
Jack really loves Teddie too and is always intrigued by her new and fun toys.  Last night we discovered that Jack loves slinky's!  So, I will be buying some slinky's tonight for sure.
That's Kelly in the background, who is in school for OT,and has been shadowing Teddie.  In OT, we always start our sessions with feeding...picking up food mainly, sign language and drinking from a cup or straw.
Teddie always comes prepared and gives me handouts and ideas each session.  She is very focused and just fun!  Thank you Teddie for all your hard work and passion...it is definitely paying off!

Our latest edition to our Therapy Family, is Jill, Jack's Speech Therapist.  Jill has been working with Jack for about 2 months now I think.  We just increased her time to once weekly and she comes to our house for therapy each time. 
Jill is helping with feeding too and sign language.  Signs we are working on are: eat, drink, more, finished/all done, momma, dada. 

Jill encourages Jack to talk/ babble..which he is amazing at!  Jack doesn't stay quiet for long :)  Jill is also working with Jack on clapping, waving hi and bye and recognizing who momma and responding to his own name. 

side note - Michael and I just realized earlier this week that Jack doesn't know the word, "mama".  This broke my heart.  When I say, "where's Daddy?" Jack will look around everywhere until he finds him.  But if you say, "where's Momma"...nothing.  I know he knows me, of course.  He prefers me over everyone and lights up when I come into the room, but he doesn't associate me with the word 'momma'.  I know this is because no one really refers to me as that. Michael calls me Lou all the time...so maybe if we ask Jack, "where's Lou" he will look at me, LOL!  So, a main focus for us in speech right now and in general is to have everyone refer to me as "momma" so that he knows that's my name.  He also has only made the "ma-ma" sound twice.  It's a much harder sound to make than "dada" or "baba" etc, so we have been working diligently on that.
We are excited to get to know Jill better in the future and are happy she is a part of our therapy family.  They are really like family and we love them all and appreciate them soooo much!!!