To Love Endlessly

Happy Heart Days and Sad "See You Laters"

2012-01-26T20:54:00.000-08:00

Yesterday was Little Miss's Happy Heart Day. Her special day was overshadowed in expectation of today. On Jan 26, 2009 she had open heart surgery. She's a warrior, a survivor, and has beat the odds that are stacked against her. We love this little girl and couldn't imagine our lives without her in it.
At 4 months old she went from this...

to this in 2012 (yay we're SUPER blessed)...

However today, we're entering a new chapter...

We have to say goodbye for a little while to the very bestest playground player!

The littles are always happy to see him walk through the door at the end of the day, their wait is gonna be a lot longer in this chapter.

Please keep the kiddos and their Daddy (my best friend) in your prayers. This will be our 4th, Marissa's 2nd, and the boys 1st "see you later" so the littles don't understand what is happening and I don't think Daddy realizes how much he'll be missed.

We love you and miss you so very fiercely!! Our hearts are incomplete with you being gone.

Post Op Tonsilectomy

2012-01-26T07:40:00.000-08:00

Little Miss had her tonsils and adenoids removed on January 13 at UAB. She had a rough recovery, but had strong meds to help her through the pain. We're at the end of week 2 post op and she is definitely back to herself. She's watching Barney like a champ, asking for cheerios all day long, and give her brothers a run for their money. She hasn't been to school since her surgery though. I can tell she misses her teachers, friends, and riding on the bus. (She specifically asks about the bus every morning.)

I've own this book for a while. Actually I got it as a Christmas gift shortly after Little Miss was born from my sister. I've looked at it here and there, but I just now started putting it to use. Little Miss is picking up quickly.

(She's pointing to her name) :-D

And Little Miss LOVES puzzles. She plays with puzzles all day long. This particular puzzle gives her some trouble because of the sun piece. She has a hard time line up the suns' rays. Well, she's got it mastered now.

And like all individuals with Down Syndrome she has low muscle tone, so we had to throw in some physical therapy too.

The boys were kept around to help M with her alphabet. We can all see how interested they were with that book.

So, we're back on the road to some sanity...as much as what can be found with these 3 around.

Meeting Friends

2012-01-25T18:51:00.000-08:00

Thanks so our good fortune we were able to meet up with a fellow facebooking and blogger friend @ Penny's Peeps on Monday... She happened to be passing through our city so we planned an impromptu lunch date.

First things first for Little Miss and Wyatt...where to sit and eat.

That is until they realized there was a playland there!

There will definitely be many more visits for these two!

We're going on a car ride...

2012-01-11T18:16:00.000-08:00

The 5 of us were supposed to drive to Birmingham tomorrow for Little Miss to have her tonsils and adenoids removed at UAB. She's having this procedure because she has Sleep Apnea.

Unfortunately Baby A (he's the one with no pants on) got sick with croup. :-( That means no couped up car rides for him and Little Miss because she CAN NOT get sick.

Baby Bear is perfectly fine and not getting mixed up in the sickness web. See...

Thanks to all my amazing prayer warrior friends and God's many blessings...Little Miss hasn't been infected by her sickly Little Brother. ;0) ...anyone notice the tiny cheerio Brayden is stashing for later on his neck?!? lol

So tomorrow Daddy and Little M will make the long trek (4-5 hours) "up north" for the surgery we've been waiting almost a year to have! Please continue to keep her in your prayers. It'll be a long couple days for her and Daddy.

Must See TV

2011-12-26T19:01:00.000-08:00

Hidden Angels: American Families Saving Children With Down Syndrome

This story is inspiring and heart wrenching. May you each be called to act in your own way: to donate, adopt, or to pray for the children looking for their forever families. Go ABC for bringing to light the unseen children looking for their families! Go Reece's Rainbow for bridging the gap for these children!

A Year in Review

2011-12-25T18:38:00.000-08:00

Seeing as my posting track record is pretty sketchy I'm opting to post our year end review early. Better early than never at all. ;0) Enjoy our growth chart.

Merry Christmas!

2011-12-25T07:18:00.000-08:00

Our savior is born! Amen and Merry Christmas!

Happy 1st Birthday Benjamin & Brayden!!!

2011-11-02T18:46:00.001-07:00

Then...

And now...

Here's Ben

...and Brayden

My sweet babies are now ONE!!!

Happy 3rd Birthday Little Miss!!!

2011-09-21T19:46:00.000-07:00

You are loved, beyond measure!!!

Produce Bag Anyone?

2011-07-09T18:42:00.000-07:00

Little Miss will be turning 3 in just a couple of months. And what I was hoping to be a simple transition from IFSP to IEP has turned into a little bit more of a song and dance.

Turns out we came up on orders and will be moving to a completely new state, new county, new district, new teachers, and so on. But somewhere in all the planning, I wanted to find a special way to say thank you to all the fabulous people that have been with us thus far and helped M learn and grow.

I made the bags, Bradley made the labels, and they labels we printed on a page that Little Miss colored with her own little hands.

The label reads: "One hundred years from now, it will not matter what my bank account was, how big my house was, or what kind of car I drove. But the world may be a little better, because I was important in the life of a child."–Forest E. Witcraft

So the bags are done, any suggestions on what to fill them with? I'm thinking homemade bread...Little Miss could even help me bake them. I need 32 "somethings" to fill the bags with...

Happy 4th of July!

2011-07-04T18:33:00.001-07:00

We enjoyed a picnic at our church...

We attempted a group photo...

We didn't go anywhere just because we think the kids are still too young to enjoy the festivities, but Little Miss LOVED the fireworks that we put on at the house.

Her favorite part were the sparklers!

What worried you?

2011-06-20T16:36:00.000-07:00

The Ailts Family blog posted their favorite Baby Center post.

When we found out about Little M's diagnosis there was a whole list of worries. My first and foremost worry was that she wouldn't be accepted. Boy was I wrong...

Just look at all these people that walked for her and for Down Syndrome at last year's Buddy Walk in MI.

My little girl is loved, watched over, and accepted. I try to surround her by people that speak to her with kindness, are patient with her, and primarily that treat her as an equal.

She stole my heart the moment I met her.

I still worry for her, but I know God has a plan for her. She'll do (and be) great things and be loved all along the way.

What were your worries when you first found out about your child having Down Syndrome?

Farmer's Market

2011-06-18T17:28:00.000-07:00

Our county just started running a Farmer's Market up the road from us. I've been taking Little Miss there on Saturday mornings for a little bit of alone time and to take advantage of some organic produce for not a lot of money.

This afternoon I whipped up a batch of Strawberry Applesauce.

The bananas I snatched up were big hit with Brayden. (Okay so those weren't grown locally, but they were still a big hit.)

And Big Ben can pack away some sweet potatoes.

No doubt the favorite for Little Miss: Reese's Cups ;-)

Diapers for Dariya

2011-06-17T23:33:00.000-07:00

Guess what Pudge and Biggs are up to: helping collect cloth diapers for Dariya's orphanage where they rinse out disposable diapers and re-use them. Pudge and Biggs and looking to bless an orphanage in Eastern Europe with some fluff (also known as cloth diapers). Have any in your stash your kiddos have outgrown, maybe a pair that doesn't fit as well as you'd like...please consider donating your Diapers for Dariya.

Don't have any cloth diapers? There's a chip in link too...donate a couple bucks, it all adds up.

Just head over to Pudge and Biggs for more info...

Cousins

2011-06-16T16:56:00.001-07:00

Brad's sister came for a visit last week with her 3 kids. Bradley had to work all week so it was me and her with 6 kids. Now, you might not think that's much of a vacation, but spending time with family is priceless in our book.

And additionally priceless paying a professional to get pictures where all SIX kids look pretty close to perfect.

Thanks for visiting Julie, John, Becca, & Bradley! We miss you already!!

Solids

2011-06-14T18:10:00.000-07:00

The boys are now 7 months old and starting solids. They've been exclusively breast fed (with a bottle here & there) until now. I'm pretty proud of myself for sticking with nursing for so long, with twins no less. Little Miss nursed until she was 18 months old simply because I couldn't get her to drink from a cup. With all the reading I'd done I knew that nursing twins would be a struggle so my plan was to take it 1 day at a time. 1 day has turned into 7 months and counting... Well anyway...onto the pictures.

Brayden is doing a fantastic job of trying to self-feed. Although he manages to get more on his body than into his mouth. That's probably why he's so skinny.

And then there's Big Ben (he's the baby of the family, but bigger than Baby Bray)... Ben's not much of a fan of eating, unless fresh peaches are on the menu.

M has been enjoying eating treats that turn little mouths blue and being chased after by her incredibly hilarious and fun Daddy!

We've been to the park a time or two. I think we may need to consider official playground testers as a career field. ;-)

And of course summer fun means lots of water play. I have to add, we recently bought a pool so Little Miss can swim. Holy Toledo, this little girl is a FISH. She has no fear in the water (scary for me). We've had the pool about 2 weeks now and she's already trying to float on her back and kick her little legs. This little girl...she's simply amazing.

Wordless Wednesday

2011-05-25T19:07:00.000-07:00

She loves Monkey...

Starting solids...

Our vacation, Part 2

2011-05-14T17:50:00.001-07:00

We met with my Aunts and Uncles (there was another set we met with but I failed to take any pictures :-( ).

This is Courtney and her mom, Shelly, who graciously offered to watch this kids so I could have a lunch date with my mom and sister. An amazing day out! I can't thank enough for watching the kids. Shelly has taken a special interest in Little Miss. There's just something about little Miss that draws people to her.

M has developed a true love for popcorn. She refused to share with this sad face. Sorry Crash...

Uncle J gave M a pack of stickers and a koosh ball, fun stuff!

We learned that Little B is pretty hety for M to pick up.

Grandpa, Aunt T, and Gramma with the kiddos

And last, but certainly not least, Little Miss met Grandpa home from work with welcome home kisses.

Our vacation to OH in a nutshell...

2011-05-11T20:34:00.000-07:00

Marissa mastered drinking from a straw cup!

Sang Hallelujah at church with Grandpa

Went for a walk around the block.

Met up with one of our all time favorite blogger buddies...Lily and her mom.

And the boys were introduced to Crashdog and Rosie.

Aunt T and Uncle Jon entertained the kiddos.

Gramma played with Benjamin

Little Miss got to go on a tractor ride.

She LOVED it!!

There are lots more pictures to share, unfortunately my camera cable is being fussy. Look for more pictures once we get back home. :-)

Happy 1/2 Year Baby Boys!!

2011-05-02T18:57:00.000-07:00

The boys played all morning in the new seats from Gramma

Little Miss sat around and chatted on the phone while she did a load of laundry. Cute, right?!?

Then we had a playdate with Alex, isn't he too cute?!?

Little Miss loved the cinnamon bread and apple slices. Thanks Elizabeth for being such a great hostess and enjoying our crazy company!

And I finished off the night with my fabulous knitting group in Ohio, along with a glass of wine, that I haven't seen in FOREVER. The kids stayed home with Gramma, Grandpa, & Aunt T...a million thanks to each of you for watching the crying crew. Honest, I thought they would sleep.

Guess who we met?!?!?!?

2011-04-30T17:27:00.000-07:00

SARAH!! We've been following Sarah's blog for sometime, probably since I started blogging, so for nearly 3 years.

Sarah and her mom (and the rest of their family) are an absolute inspiration to me. Joyce, Sarah's super stellar mama, stands for everywhere we want to be in future years. As a parent, Joyce has met and conquered challenges with grace and perseverance. And her daughter Sarah, repeatedly makes me smile, literally from ear to ear. I always talk about Sarah with others and share her story of success and now I can brag that we met her! ;-) Sarah is kind, well spoken, and just simply amazing. She's a 21 year old college graduate, gainfully employed in at JEllen's House of Fabric.

Sarah and her mom have done great things which have impacted the special needs community in a very positive way. I can't wait to see what the do next!

Meet a new baby in town that has something more!

2011-04-25T19:55:00.001-07:00

We drove north for the Easter weekend with Little Miss and the boys.

We stopped over to visit Aunt C in Indy.

Played around with one of our favorite cousins.

Sang ring-a-round the rosie with our cousins.

And met a new member of the family, also blessed with an extra chromosome...

Meet baby Ian. He was born in March and only weighed 4 lbs 11 oz., he's up to 7 lbs now. He has a big brother and a mama that asks a lot of good questions. Their Daddy had to leave a week after he was born for military training and won't be back for several months. :-( Needless to say, she has her hands full!

Little Miss loved giving him kisses and his big brother made sure she was always gentle with his baby.

Ian can rest easy, he's in excellent hands and will surely go far.

Ian's mom doesn't have a blog, but if you're friends with me on facebook I can suggest her to you. I know I haven't been good about keeping up with everyone since the boys, but let's show them some love.

Happy Easter!

2011-04-24T18:47:00.001-07:00

Easter with the cousins. *And yes, the twins have mis-matched socks thanks to their Daddy's silly sense of humor. ;-)

Daddy helping Little Miss find some eggs

This is MY 1st ever egg hunt because of family beliefs. I'm still on the fence about our participation in the event, but it was a good time and brought family together to celebrate the day our Lord rose from the dead. He is Risen, indeed.

M insisted on carrying her own basket

Even with a little trail of scattered eggs behind her, thanks to Grandma who picked out her beautiful dress, she looked like a princess all day.

Wrightslaw

2011-04-08T17:04:00.000-07:00

Little Miss turns 3 in September which means the end of our IFSP and a transfer into the school system and establishing an IEP. We recently attended our transitions meeting and as I prepared myself for the IFSP review and the transition meeting, I felt overwhelmed by the information and process of IEPs. In my research, the name Wrightslaw was mentioned several times by various people.

Who is Wrightlaw you ask? Wrightslaw is a leading educator for parents, caregivers, teachers, and lawyers on special education law and advocacy. I was lucky enough to attend a Wrightslaw presentation this past week in Greensboro. It was a 2 hour drive to my destination, but well worth the trip.

As part of the conference fee, I was provided with 3 books:
Wrightslaw: All About IEPs, Wrightslaw: Special Education Law, 2nd Edition, Wrightslaw: From Emotions to Advocacy, 2nd Edition

A lot of emphasis was placed on the Law book which Pete said was because most people find the laws behind IEPs overwhelming, so he presented it in a manner that made the information understandable and user friendly. The Law book is however, more of a reference book, but the lecture helped me to become familiar with specific codes and reference points.

However, the amount of information in each of the books provided would be nearly impossible to cover in a 1 day lecture, so he gave us homework to come home and read From Emotions to Advocacy on our own time. This book essentially empowers the parent/caretaker to become a better advocate for their child by thinking realistically and taking an approach that is driven by reason rather than emotion. *This is something that has been the most difficult for me, and most parents, because when it comes to our kid(s) I can be very emotional.* What I need to remember is that, for the most part, everyone that is apart of the IEP team is interested in my child being successful and reaching the goals that are set for her. Establishing a good working relationship with the people at that table is more likely to be accomplished if I communicate with them rationally and reasonably.

The training began and ended with pre-test/post-test. Some of the highlights are as follows:
IDEA 2004 consists of many sections in the US Code beginning at 20 U.S.C. Section 1400. The most critical of sections are between section 1400 and 1415.

Purpose
The purpose of special ed law, IDEA 2004, is to ensure that all children with disabilities have available to them a free and appropriate public education that emphasizes special education and related services designed to meet their unique needs and prepare them for further education, employment, and independent living, and to ensure that the rights of children with disabilities and parents of such children are protected.

SMART IEPs
Specific
Measurable
Action Words
Realistic
Time Specific

Was the conference overwhelming? yes. Do I still find IEPs a scary? A little, but not so much. Did I gain confidence and understanding? Absolutely.

After all, what better way to advocate for your child with special needs than to be familiar with the law that was established to encourage the growth and development of your child within the school system?

Update on Adam

2011-04-07T18:18:00.000-07:00

Hey everyone! Thanks for all the prayers for Adam, they worked!

Adam will be laid to rest sometime this weekend. Please continue to pray for their feeling for peace and healing. Thank you!