Lovin' Life with our blue eyed beauties

Sunrise over Pikes Peak

2012-02-10T09:14:00.000-05:00

I was up and showered before the sunrise this morning

Which gave me the opportunity to go out on the deck

and catch some pictures of this amazing view.

In my pj's.

And bare feet.

It was 21 degrees outside.

It was a great experience until Lila decided to lock me out.

Love that kid.

Kindergarten!!!

2012-02-09T02:27:00.000-05:00

Tomorrow is the big day! Lila starts kindergarten at a new school tomorrow. She will be attending a typical kindergarten class with some para support when she needs it.

I am so excited.

It probably seems weird that she is starting kindergarten at a new school tomorrow

when we have been in Colorado for over a month.

It has been a bit of a journey.

When we came to Colorado in early December on our house-hunting trip

I spoke with the Assistant Director of the Special Education department

from the school district we wanted Lila to attend.

We had a few phone conversations during the month of December

and Lila and I met with her when we first arrived in January.

We thought we had everything in place!

Unfortunately, the temporary house we were leasing

was in a different school district.

The lady that owns the house has grown kids

and didn't have first-hand experience

but said that she regularly saw school buses

from the district we had chosen.

We should have double-checked.

We didn't.

Imagine my disappointment

(shock, anger, tears)

when I went to the district office to register Lila for school

and found out our house was

in a different district.

Less than two blocks from the boundary.

Not the end of the world, for sure.

But extremely disappointing.

Especially after all the work I had done to make sure

everything was in order

and Lila would be exactly where we thought she should be.

The next day the girls and I were out and about

when Tif and I decided to go to Starbucks.

It was extremely cold- the wind was blowing like crazy.

We decided that I would go in

and Tif would stay in the car with the little ones.

When I walked in there was nobody in line.

Awesome!

Then I remembered I hadn't even asked Tif what she wanted.

Feeling silly, I went into the bathroom to text her.

She answered right away and I walked back out of the bathroom.

To a line of 8 people.

Wow.

I headed to the back of the line and realized that I was standing by the lady

that Lila and I had met with from the Special Education department.

Really?

I asked her if she remembered me and she said, "Of course!

You're Lila's mom! I just can't remember your name."

We chatted about what had happened,

She was very supportive and encouraging.

She even asked me if Tif had found a job.

I told her to keep Lila's file close because we were moving to her district.

Soon.

I got back in the car and said to Tif, "Do you believe in Divine Intervention?"

I do.

I had been feeling pretty down about the situation.

Feeling like I had failed my little girl.

A chance meeting in Starbucks was all I needed to motivate me

and get me back on track.

Fast forward through crazy house hunting

bizarre wallpaper in one house, a huge 6 X 5 foot amphibian

cage in the living room of another.

And moving chaos.

You don't wanna know.

Well, maybe the wallpaper is worth sharing.

I snapped a few shots with my cell phone.

If you have wallpaper and love it- I'm sorry about the little detour in this post

where I'm poking a bit of fun at the wallpaper.

I'm just not a wallpaper kinda girl.

Powder room and Master Bathroom. Nice, eh?

Thanks to an old friend of mine who directed us to a military by owner website,

we located the perfect house for us.

As soon as I had a copy of the lease,

I headed back to the district office

that I had left crying

3 weeks ago.

Success.

Lila was registered for school.

The school we requested is not Lila's home school.

It's the school that was part of the original plan.

Out in the forest, where our first temporary house was.

Where we love it.

Where there are more trees than people.

(Is that bad?)

They granted our request.

Lila will be attending the school we chose for her.

I was happy.

It felt like things were starting to come together.

They called me from the school and asked if Lila and I

wanted to come out for a tour of the school.

The school among the trees.

They were so welcoming.

They were expecting us 3 weeks ago, then they got the call that

it wasn't going to work out right now.

The lady giving us the tour said to Lila,

"We didn't expect to see you this year!"

I just smiled.

They don't know her mother.

I wasn't sure what to expect when Lila started school.

We hadn't gotten to that point 3 weeks ago.

I knew what I had requested but I wasn't clear

on the decision that had been made.

So I asked.

"Where will Lila be placed when she starts school on Thursday?"

The woman who was giving us the tour is the

head of the special education program at the school.

She looked at me like she didn't understand the question.

She asked me what I meant.

I said, "Will Lila be in the typical kindergarten classroom?"

She said, "Of course she will! There is no reason for her not to be there."

Then she went on to say,

"We have a wonderful staff.

The teachers here want all students to be

included in their classrooms."

And you know what?

I believe her.

The reputation of the school

backs up what she said.

I drove out of the parking lot

with happy tears in my eyes.

Feeling like our girl is

right where she is supposed to be.

We are happy with her placement.

We are grateful for how things turned out.

Kindergarten is a pretty big thing!

She's ready.

There will be more quality time

with this one.

Which was also part of the original plan.

P.S. Lila has been going to school during this time.

We gave the other school district a try.

It was a 3 hour a day, 4 day a week

preschool program.

It just wasn't right for our girl.

Happy, Happy Birthday Sweet Girl!

2012-01-23T23:17:00.001-05:00

On January 15, 2011
This proud mama sat in a church sanctuary
watching her baby boy get married
with tears streaming down her face.
Across the country, at the very same time,
a baby girl was born.

A few months later,
the paths of those two families crossed
in a way neither of them would have ever imagined.
A child who was born to one family
was destined to belong to the other.

As I hold this precious child
looking into her almond-shaped
violet-blue eyes, button nose
and perfectly shaped mouth
I realize I will have a hard time
doing her story justice.

Most of the story will never be shared publicly.
It is too private. Too sacred.
And it shall remain in that private, sacred space.
The rest of the story will be shared
after the adoption is final.

On January 15, 2012
We celebrated that beloved girl.

that joined our family when she was just a peanut.

Instantly adored, especially by her closest big sister.

The feeling was mutual.

Looking back, it's hard to believe the story is true.

That she was born the same day Justin and Maggie were married.

While the ceremony was taking place.

That little peanut?
Oh, how she has changed!

She is completely mobile now.
Crawling all over the place.

Transitioning from crawling to sitting with ease.

The girl that wants to be in the middle of everything.

And lets you know if she is feeling the slightest bit left out.

The little girl who refuses baby food.

She wants to eat what everyone else is eating.

And don't try to fool her.

She's not having it.

The little girl who is loved beyond measure.

And she knows it.

The little girl who has more spunk at the age of one

than a lot of people have their entire life.

The little girl that loves to laugh.

And can cry on demand.

Then she'll turn it off when she gets what she wants.

(Little actress.)

We celebrated her birthday

surrounded by some family
and new friends.

Ladybug style

poor little peanut, she hated this headband

Happy Birthday to You,
Happy Birthday to You,
Happy Birthday Dear Lexi,
Happy Birthday to You!

She was not interested in
blowing out her candle.
Thankfully her sister
was all in.

She loved her cupcake!

Lila loved the cupcakes too!
She ate her entire cupcake like this:

Love her

Lexi had lots of help
opening her presents.

By the end of the night she was so sleepy
we could barely get a smile out of her

Lexi, we celebrate you.We celebrate who you are

and who you will become.

We are proud of your accomplishments

and know that you will continue

to blow us away

We love you to the moon and back.

Blessed Beyond Belief~

Linda

Sick Bay

2012-01-22T01:57:00.000-05:00

I'm checking in from Sick Bay. Tif had a stomach virus earlier this week and she still hasn't fully recovered. Last night Lila started vomiting around 10:30pm. Poor little thing. She freaks out so badly- she doesn't want to get sick so she tries to stop it and ends up choking. It's pretty scary.

Nick and I both ended up sleeping in her room with Tiffani right outside the door. Thankfully she stopped vomiting about 6:30 this morning. She was very weak today but seems to be much better this evening.

We had lots of down time today.

Thankfully, Miss "I-have-an-immune-system-made-of-steel" is still doing well.

"Who, me?"

One of her birthday gifts was an inflatable ball pit. As she is crawling all over the place and getting into everything, I thought we could use it as entertainment/containment. It worked! For about 2 days.

Then this happened:

She is one determined little girl. It's amazing. She never gives up, she just keeps trying. After she succeeds, she gets so tickled. It's adorable.

In the midst of it all we are still looking for a place to live. It turns out the temporary house we are living in isn't in the school district we had chosen for Lila like we thought it was. We found out that we are on the wrong side of the road that divides the districts. Literally. Less than half mile from the dividing line.

I cried.

We thought it would be relatively easy to find another place in the district we originally chose but it hasn't exactly worked that way. We'll keep looking and the right house will open up. All in all, we are doing well. Even though things have been a bit challenging we have no doubt that we are exactly where we are supposed to be.

The scenery doesn't hurt at all.

photo courtesy of my niece Jaralei

I was working on Lexi's birthday post last night when Lila got sick. I hope to finish it tomorrow evening.

Happy Weekend Everyone~

Linda

Wordless Wednesday

2012-01-19T01:06:00.000-05:00

Preview of the sleepy birthday girl- post coming soon!

Hugs~

Linda

At least Santa looks good!

2012-01-11T00:55:00.000-05:00

Here are a couple of photos from our Down Syndrome Holiday Party in Virginia. (And perhaps one of the many reasons we didn't send out Christmas cards this year.)

Exhibit A: Lexi's famous "Look, ma- I don't have any teeth" face.

Exhibit B: Lila's equally famous "I want to hurt the photographer" face.

I hope to get cards out by February- at this rate they will probably be "new address" cards. Or we might wait until March when the adoption is final and we can announce Miss Lexi as an "official" member of our family. It feels like she already is. But in March the waiting period will be over, papers will be signed and we will have much reason to celebrate!

I will update soon- we have been very busy getting settled. It hasn't all been pleasant but it will all work out!

Much Love~

Linda

Thoughts rolling around in my head...

2012-01-06T01:07:00.000-05:00

I'm trying to get better at updating my blog.

(I have so much catching up to do!)

For now, an update on things in Colorado.

We are still settling in.

Tif and Lexi are both sick right now-

thankfully Tif is on the mend

and hopefully Lexi will be soon.

As far as we know

it's the first time she's ever been sick

and she's not taking it very well.

She's very congested

so sleep isn't really happening for her.

Last night I tried to sleep

sitting up in bed while holding her

so neither of us slept very well.

Poor little thing.

She's pitiful.

In other news,

Lila had her first "dance cwass" this afternoon

She loved it.

After dinner she played

her own version of cornhole

until bedtime.

She rocked it.

Proof positive

that we probably need to get out more!

I love how she's playing by the rules we set up for her

using Lexi's cabbage patch doll

as the line she had to stand behind.

I've never had the pleasure of living by the mountains before.

I totally get it now.

I seriously doubt this will ever get old.

Yesterday it was so beautiful outside we didn't even need jackets.

Snow on the ground and all.

It's a little weird but awesome at the same time.

Lexi has been busy

refusing to eat baby food

pulling herself up from her tummy into a sitting position

and learning to crawl.

Lila's just trying to get out of her way

Absolutely no idea what's going on here but

this picture cracks me up

All in all, things are good.

We have a meeting tomorrow

with the assistant director of special education

to decide Lila's school placement.

It looks like she will be headed to kindergarten

instead of preschool.

We will take things one day at a time

and see how things go.

Last but not least

a very happy birthday

to my silly son.

Justin, you have brought so much joy into my life.

So much adventure.

You always keep me on my toes.

I love your beautiful heart and

the love that you have for others.

Happy 24th birthday! I love you!

Hugs from beautiful Colorado~

Linda

Hello, Colorado!

2012-01-02T01:31:00.001-05:00

We are on our second full day of living in Colorado and we are loving it! OK, so I admit that we are still in the honeymoon stage. We currently have no school, no work, no therapy sessions, no early intervention. Nothing. That means we have been doing a whole lot of relaxing. Just what the doctor ordered after the stress of moving. ( A bit of free advice: don't move during the holidays. It's really not a good idea. Just my opinion.)

It is beautiful here, and that has helped soften the blow of adjusting to the huge difference in altitude-Ashburn, VA is 274 feet above sea level and Colorado Springs is 6,035 feet above sea level. Not to mention that we changed from Eastern to Mountain time!

The Colorado sky is stunning at sunset.

We rang in the new year by watching the fireworks that were set off at the top of Pikes Peak from the front porch of our rental house. I don't have any pictures but trust me, it was awesome!

Happy New Year Everyone!

(Pardon the dirty faces)

Hugs and Kisses from Colorado!

It's a new year, a new location, a new beginning. Unfortunately, the thing about a new beginning is that it requires something else to end. A post about saying goodbye to our loved ones in Virginia coming soon.

Until then, I hope the start of this new year brings amazing new beginnings for you and yours.

Hugs~

Linda

Merry Christmas Eve!

2011-12-24T23:33:00.000-05:00

With Love From Our Family to Yours!

Love the life you live....

2011-12-13T22:31:00.000-05:00

We are blessed and thankful to say...... we do.

A little update.....

2011-12-10T09:39:00.000-05:00

The house is quiet, as everyone else is sleeping. This mama can't sleep. My mind is too busy.

Last week I made the appointment for Lila's last IVIG treatment here. December 28th. Two days after that, 20 days from today, we will board an airplane and leave our home in Virginia. The place we have called home for almost 8 years. Our first house together. The place where Lila was born and we began our Down Syndrome journey. Where Justin found his love Maggie and Tif earned her degree.

Home.

We didn't expect to stay here longer than 3 years but it never worked out for us to leave. We couldn't figure it out then but now we know. We weren't supposed to leave. We would have been missing the newest member of our family.

I will miss this place and the people around here that I have come to love dearly. I will miss this house and will always treasure the memories we have made here. I was looking at the listing of our house and it really brought back some of them.

The entryway.

Where Nick carried me

across the threshold

into our first home together.

The family room, where we

got the call from the doctor

confirming that our baby had Down Syndrome

at 16 weeks gestation.

Lila's room, which was the office.

The room where I spent hours during my pregnancy

doing research

about Down Syndrome.

Scared at first,

then hopeful.

The playroom, which was once

the dining room.

Tea parties, play dates with friends

and hours of "reading" happened here.

Lexi's room, which was Justin's room.

I thought he was my last baby.

Think of what we would have missed!

We got home yesterday from our house-hunting trip in Colorado. Last Sunday we flew into Denver and drove to Colorado Springs after the sun had already set for the day . It was snowing and cold. The next day we woke up to this view from our hotel room.

Not bad, huh? The people are even better. Thanks to Carmen, Renee and their kids we have a little girl who is very excited about moving to Colorado. She can't wait for her new "dance cwass" to start!

Here are a few more I managed to capture as the other passengers in the car were tortured by this amateur pulling over repeatedly, trying to get the best shot possible of the beauty that surrounded us.

Garden of the Gods, in the shade

The other side

We drove to the base of Pike's Peak to visit the North Pole, but this is what we found.

So basically if Nick and I had been just a little older we could have gotten into the North Pole free. Had we not been there on a Wednesday.

We tried to make it up to our little Christmas lover by visiting a shop in the quaint little town of Manitou Springs.

She loved it.

This weekend will be spent getting ready for our Playdate of Giving on Monday. I hosted a Playdate of Giving a couple of years ago, but this one is different. Some of the members of our local Down Syndrome group are adopting a Head Start family from the local school district. I will take the gifts to the Head Start office on Tuesday where they will be distributed to the family on Tuesday afternoon. Spreading some love to a family in need is what it's all about for me.

Happy Weekend. Make it a great one.

Wordless Wednesday

2011-11-16T22:34:00.001-05:00

The clock keeps ticking......

2011-11-13T22:57:00.000-05:00

The end of December (our move to Colorado) is quickly approaching. I'm not ready for this. I'm not ready to say goodbye to the people around here that mean so much to me. But time doesn't stop and life goes on whether we are ready for it or not. The house is officially on the market. This is really happening. And I am determined to make the most of the next 6 weeks.

The weekend was a good one, as most fall weekends seem to be. This one started early when I surprised Nick with Sting concert tickets for his birthday on Thursday. He said it was a great birthday present and we had a fabulous time.

On Friday I headed out to Richmond for my last Partners in Policy session in Virginia. It was an amazing session, as they have all been. When life slows down a bit I hope to blog about my brief Partners experience as it has certainly changed my attitude and the way I look at things. Not only at things that pertain to the disability community but the way I look at life in general. (More on that later!)

After church today we headed out to a hiking/wildlife park to picnic and take some pictures of the girls. I'm so glad we found this treasure. I plan to go back every chance I get before we move.

Out of focus but I can't resist these faces...

The beauty, the peacefulness.....

Just what the doctor ordered.

Have a great week!

Linda

Weekend Snapshots

2011-10-30T22:37:00.001-04:00

This snowy fall weekend went by way too quickly for me. And while I should be finishing the adoption post and/or proof-reading the post I wrote about the new Down Syndrome test, I'm just not feeling it. Truth is, I'm feeling a bit anxious about our upcoming move to Colorado Springs at the end of the year. So tonight I needed a happy, no-brainer post. Here's a little peek into our weekend.

In the middle of the "historic snowstorm", we headed out to Bethany's Halloween/Nika's Birthday party.

Mama the sailor and her little pirate

The next day the snow was gone and it was time to carve pumpkins!

Lila wasn't too sure about this part.

Really, Sissy? You want me to touch that?

Reluctantly digging out some seeds

I guess that was taking too long- she's all in!

The Master Pumpkin Carver

The Finished Product

Perfect opportunity for a photo op

Mama can't pass that up.

We ended the weekend with some Daddy/Daughter Time.

I am very excited about Halloween tomorrow. For the third year in a row, we will be spending the evening with our dear friends Brian, Michelle and their kids. We are so thankful for friends that feel like family.

As we begin to celebrate a whole lotta firsts for our Lexi girl,

we'll start out with her first Halloween.

Happy Halloween!

Linda

January Wedding

2011-10-24T00:11:00.003-04:00

Wedding week: the Texans have arrived!

Bachelor party night!

(Now that's more like it!)

Bachelorette/Henna Party

Maggie's mom and me!

Rehearsal Dinner, Texas Style

Part of the rehearsal dinner crew.

Thanks so much everyone! We could not have done it without you!

The happy couple arrived at the rehearsal dinner.

There was some silliness, of course......

Apparently there were also some serious discussions

Some family pics were snapped around the margarita ball

After dinner, there was work to do.

Some quiet time was spent.

January 15, 2011
Wedding Day

Brother/Sister Hug- I love these kids!

No peeking!

A bagpiper welcomed the wedding guests.

A surprise, compliments of my awesome husband.

Getting ready to walk down the aisle.

Flower girls

Mags and her parents

The groom is moved to tears at the sight of his bride.

The ceremony

The Sacraments

The Kiss

Grandma and Grandpa Paulson~ Blessing of the Marriage

Mr. and Mrs.

Mags and the Best Men

Justin and the Best Ladies

My beautiful daughter-in-law

The happy couple

The new family

The celebration is about to begin!

Grand Entrance

First Dance

Oops......

Yes, this actually happened. : )

The toasts

Father/Daughter Dance

Mother/Son Dance

Justin surprised Maggie and Tiffani by singing January Wedding at the reception. Tiffani heard this song for the first time when she was working in Wyoming. She told Justin and Maggie about the song and there wasn't much discussion about it after that. The day before the wedding Tiffani and Maggie each asked Justin to make sure that the song was on the play list for the reception. Justin acted very nonchalant with both of them, not wanting to give up the surprise.

They loved it.

A good time was had by all...

Farewell to the happy couple!

On January 15th, 2011 we welcomed Maggie into our family and Justin was welcomed into her family. It was a beautiful union not only of two people but of two families, bound together by love.

Family and friends traveled from near and far to attend the wedding of Justin and Maggie. The sacrifices that were made by loved ones were humbling and will never be forgotten. We are very blessed.

Welcome, Maggs. Better late than never. : )

Linda

Strike a pose

2011-10-12T15:33:00.000-04:00

Happy Wordless Wednesday!

Lexi has something to say!

2011-10-05T22:31:00.001-04:00

Facebook friends: Sorry, this is a repeat. : )

Wordless Wednesday....

2011-09-28T22:25:00.000-04:00

Happy, happy!

Linda

The time has come...................

2011-09-26T22:47:00.000-04:00

The time has come to rename the blog. For obvious reasons.

Suggestions welcome!

Linda

Almost Wordless Wednesday...

2011-09-21T12:50:00.001-04:00

This (Almost) Wordless Wednesday will be dedicated to Justin and Maggie who are currently driving down the road in a U-Haul truck. Towing their car behind them, they are starting a new adventure in their lives today. They are moving to Miami.

This mama's heart keeps doing the yo-yo between sadness and pride. Sad that they are moving so far away when we've been very spoiled being able to seem them often with only a 3 hour drive between us! So proud! They are leaving what they know to make memories together where everything will be new. Good stuff.

Here are a few shots I've been able to capture in the last few weeks:

Justin braiding Lila's hair after her bath

This is what happens when you have much older siblings..

Playing with brother

Who knows?

Staredown between the newest "baby" and the "baby-twice-removed"

Lila meets "Belle" at her birthday party

Loving Beauty and the Beast

Beauty and the Beast with the little ones

The kids with Bethany, our adoption "coach"

Have a great Wednesday! I'm going to. Big Sis Donna arrives tonight. Yay! : )

Linda

Lexi

2011-09-19T21:16:00.002-04:00

Introducing the newest family member~ Lexi! We have had the amazing privilege of being able to spend some time with Lexi in the past couple of months while the adoption paperwork was being processed. I thought I would share a few pictures I took during that time. While we never used the word "sister" during that period of time, Lila quickly fell into the role of big sister.

Sweet girls

Check out her eyes!

This is my favorite expression- she loves to give a little sideways glance!

Happy Girl!

Mutual adoration

Justin, Maggs and Lexi

She's probably wishing I would put the camera away. Never.gonna.happen.

Checking out Justin's facial hair

Love this one

Favorite toy!

I will be writing a post about our adoption story. Before I do that, there are two other kids of mine that are wayyyyy overdue a blog post!

Wedding post coming soon. Adoption post after that! And an explanation of the incredible way they tie together.

5 great kids. 3 by birth, one by marriage, one by adoption. We are very blessed.

Hugs~

Linda

Pictures and some Random Musings...........

2011-09-06T13:14:00.000-04:00

I'm going to pretend that we don't have a million and one things going on in this house and post a few pictures. : ) Here goes, in no particular order.

My beautiful daughter-in-law picking tomatoes for dinner

Lila enjoying her favorite new snack with some stuffed friends

Lila pondering life before school one morning this week

Lila being her cute little self

A couple of blurry, happy, loving-life pictures of Lila on her trampoline!

Lila dancing with her glitter baton.

Three of my kids on the front steps

This weekend was a fabulous farewell-to-summer. On Saturday we had a great time with Maggie's family at their traditional Labor Day weekend crab feast

While I was taking pictures of Lila at the crab feast she kept asking to take a picture of me. I finally gave in and handed her my camera. I am only posting this tired-looking picture of myself because I can't believe how well she does with my camera! It's pretty heavy, and she took 3 out of 3 clear pictures!. Go Lila!

The rest of the weekend was spent relaxing and hanging out with friends. We didn't get much work done this weekend but we had a great time!

It was back to work for Daddy and back to school for Lila today. The weather is rainy and chilly, as if on cue. Summer is ending. We are right at the edge of my favorite season. Pumpkin fests, here we come!

Happy Tuesday!

Linda

Is it that time already?

2011-08-29T12:57:00.000-04:00

It seems as if we just dove into summer.............

And we are already having to wave goodbye. : (

It was back to school for Miss Lila today.

Two new teachers, all new friends. So proud of her. She was ready to go with her enthusiastic self, comforting a little boy who wasn't quite as excited to be there as she was.

Her back to school funny? Right as we were about to walk out the door I said, "Lila- did you go poop?" She said, "Nope! I don't smell it!" Love her!

Update on everything else going on in our lives coming soon! Right now it feels as if I'm about to hack up a lung so off to the doctor I go!

Linda

Busy Summer and Big News!

2011-08-09T11:15:00.000-04:00

We have had a very busy summer- it's hard to believe that school starts again in 3 weeks! Our summer has been filled with playdates, music classes, picnics, barbecues and lots of time outside, which makes this mama very happy.

Lila has had some big changes this summer! She got a pair of glasses, which she definitely has a love/hate relationship with. She also had a swallow study which showed absolutely no aspiration, which means no more thickened liquids for her! After almost 5 years, she can safely drink liquids without thickener. I cried. So happy! Now we have to teach her how to drink thin liquids. We are experimenting with different cups, trying to figure out how to control the flow of the liquid. Like everything, it will be a process. We are thrilled.

We skipped the National Down Syndrome Conference this past weekend for a trip to New York to attend a surprise 25th wedding anniversary celebration for Nick's brother and sister-in-law. We had a great time. It rained for the duration of the outdoor party but that definitely didn't stop the fun!

There were a lot of people huddled under the main tent which made it a very noisy place to be. Thanks to Lila's new headphones from our friends Kevin & Nancy, she was good to go and had a great time.

With stickers and a sweet friend, life is good.

We spent the rest of our time in New York at Mimi and Poppy's house. The weather cooperated very nicely so we were able to spend a lot of time in the pool, where Lila was happy to be the recipient of some impromptu swim lessons from her daddy.

AND- Miss Lila accomplished something huge- when I was at the store, of course. She figured out how to pedal! (We have been working on this for a very long time.) So awesome!! She was happy to show off for me later in the day so I could get some pictures. We are still working on the steering component with her but are so excited about this major accomplishment!

Last, but definitely not least- some huge news! We will be adding another member to our family soon. A beautiful baby girl who just happens to be blessed with an extra chromosome. We are over the moon!

The adoption will be open and we are so fortunate to be going through this process with the birth parents and their loving families. We are at the tail end of our home study process and will be able to share part of the beautiful story and some pictures of the little princess very soon. We can't wait!

One blessed mama~

Linda

You Are My Sunshine!

2011-07-14T19:06:00.000-04:00

Wordless Wednesday

2011-07-13T07:25:00.000-04:00

Taking the time.......

2011-07-08T18:22:00.000-04:00

I love my Meals on Wheels route! I love going around and seeing all of "my people" as I call them. They are always so gracious, so appreciative. It brightens my day to brighten theirs.

This past Wednesday I was excited to bring Lila along as school is out for the summer. Well, in a way I was excited. But I was in a hurry, of course, and she wanted to get out and go to every.single.house with me. That part I wasn't so excited about. I had envisioned her going to a couple of houses with me, but not every single one!

When we walked up to the house of my favorite WWII Purple Heart recipient, his face lit up when he saw Lila. He said, "Hold on one minute. I want my wife to see your beautiful daughter." He started calling for his wife. "Anna, hurry and come to the door. You have to see this. Our favorite delivery girl brought her daughter along today. She is so cute. ANNA! Hurry!"

I almost started crying right there on their back steps. (Those of you that know me well will not be surprised to hear that.) Anna came to the door to meet Lila, then proceeded to tell us that their first great grandson had been born that week. They were so proud, smiling from ear to ear talking about that little baby boy.

Lila and I walked back to the car and did the same thing at every house on the route. Everyone was so excited to see her. I was a bit ashamed of myself for wanting to leave her in the car just because it would make my route go quicker. Seeing the smiles on the faces of my elderly friends made it worth the hassle of getting her out of her carseat every time.

She was so proud to be my big helper!

I think it's so important to teach our kids that no matter how small they are they can make a difference in people's lives. I'm so glad we took the time to live that out in real life on Wednesday.

Happy Weekend Everyone!

Linda

2011-06-30T23:40:00.001-04:00

Miss Lila is working on overcoming her fear of water and is loving summertime.

So far we've only mastered the baby pool but we are moving in the right direction!!!! (Especially since we've had the same tiny pool for 3 summers and this is the first year it's actually been used.) Woo Hoo!

She eased into it at first.......

Then she got a little bit more comfortable.........

Then all of a sudden she stood up and said, "Mom! I got idea!" with a twinkle in her eye.

She wanted the slide in the pool. At first I told her that I didn't think it was such a good idea. I told her that the pool wasn't big enough and it might hurt her to go down the slide into a pool that small. She said, "No hurt. FUN!" So, of course, the slide ended up in the itty bitty pool.

As of today the redneck riviera is on its way out.

We went to Target

and bought Miss Lila a new pool.

She picked it out herself.

Quite a bit bigger,

it has a little water spray area

and a little

built-in

slide.

I just love this little girl and her zest for life.

So blessed to be her mama.

Look who can write her name!

2011-06-15T09:23:00.000-04:00

We have been working hard on writing around here, and look what Lila can do completely unassisted!

Thankfully her name is relatively easy to write. We will keep working on this but we are so proud of how well she is doing!!!!

The weekend.....

2011-06-15T09:16:00.000-04:00

Thursday night we packed our stuff and got ready to leave on Friday for Pennsylvania to attend Justin's commissioning ceremony for his Masters program. Tiffani had flown in from Texas on Thursday night- a complete surprise to Justin- orchestrated by his wife and sister. Justin was completely surprised, and thrilled to have Tiffani there for the weekend.

Our plan for Friday:

Pick Lila up from school and head out of town

Dinner with Justin, Maggie, Tiffani and Maggie's family

Commissioning Ceremony

Italian Ice- "The best ever"

Hang out at hotel

Spend the day in Philadelphia on Saturday

Unfortunately, some time after Lila went to bed on Thursday night, she vomited all over herself and her bed. Poor little thing, she was so sick. She made it all night without getting sick again but in the morning she had no energy and did not look good. We went back and forth- should we bring her or should we keep her at home? Agonizing over the decision. In the end the decision was made for us. Lila was going through diapers like nobody's business. Whatever it was, it had moved to the other end of her body. I was hoping for some sort of miracle but that didn't happen.

Nick told me to hurry up and get in the car or we would all end up missing everything. The decision was made and I had to leave for Pennsylvania by myself. I hated leaving Nick and Lila at home but we really had no choice. (It would have been a nightmare if we had decided to take her but I will spare you the details of what was going on at home while I was driving to PA. Let's just say it involved lots of diapers, wipes, the bathtub and a couple changes of clothes.)

After a brief stop by Justin and Maggie's apartment (loved it by the way!) we headed out for appetizers before the ceremony. While I missed Nick and Lila so much, it was good to be with my big kids.

Justin, Maggie and their good friend Jared

Tif and me- I miss this girl so much.

The commissioning ceremony was very moving.

They actually prayed for each of the students individually

which gave it such a personal touch.

There was so much passion in that auditorium!

You could hear it in their voices and see it on their faces.

I was so happy to be there.

Mags, Justin, Tif & a proud Mama!

Justin & Mags

My awesome big kids

After the ceremony we went out to dinner with Maggie's family and a couple of friends. Buca di Beppo- I had forgotten how much I love that place!

After some great food and a lot of laughter, Tiffani and I headed back to Virginia so that she could see Lila and Nick before she flew back to Texas on Sunday morning. We arrived home around 3:00 A.M. When I woke up around 9:00, Tiffani was already up hanging out with Nick and Lila.

I'm pretty sure Lila ended up kicking Tif's butt in Zingo, by the way. Tif and I got back in the car around 4:00 P.M. and headed back to Pennsylvania. Thankfully, Justin met us half-way and we were able to grab dinner, just the three of us.

After dinner I hugged my precious big kids goodbye.

Knowing that I will be seeing Justin and Maggie again this weekend.

Not knowing when I will see Tiffani again.

Isn't it great to have e-mail, text messaging and cell phones?

Even though she is across the country from us she never feels that far away!

I drove away with country music blaring and the sunset in my rearview mirror,

tears streaming down my face.

It wasn't the weekend we had planned,

not at all.

It would have been amazing to have all of my kids

in the same place at the same time,

but that wasn't possible this weekend.

So thankful for the relationship I have with my family.

I hear other people's stories and I know

we have it good.

Hugs~

Linda

Living by God's grace

2011-06-12T08:26:00.000-04:00

God's Plan

Some things are beyond planning.

And life doesn't always turn out as planned.

You don't plan for a broken heart.

You don't plan for a failed business venture.

You don't plan for an adulterous husband

or a wife who wants you out of her life.

You don't plan for a child with a disability.

You don't plan for a lump in your breast.

You plan to be young forever.

You plan to climb the corporate ladder.

You plan to be rich and powerful.

You plan to be acclaimed and successful.

You plan to conquer the universe.

You plan to fall in love - and be loved forever.

You don't plan to be sad.

You don't plan to be hurt.

You don't plan to be broke.

You don't plan to be betrayed.

You don't plan to be alone in this world.

You plan to be happy. You don't plan to be shattered.

Sometimes if you work hard enough, you can get what you want.

But MOST times, what you want and what you get are two different things.

We, mortals, plan. But so does God in the heavens.

Sometimes, it is difficult to understand God's plans especially when His plans are not in consonance with ours.

Often, when God sends us crisis, we turn to Him in anger.
True, we cannot choose the cross that is given to us to carry,
but we can carry that cross with courage
knowing that God will never abandon us nor send something we cannot cope with.

Sometimes, our spirit is broken to save our soul.

Sometimes, our hearts are broken to make us whole.

Sometimes, there is pain so we can be stronger.

Sometimes, there is failure so we can be humble.

Sometimes, there is illness and we learn to take better care of ourselves.
Sometimes, we feel as if we are left with nothing
so we can learn the value of everything He gave us.

Make plans, but understand that we live by God's grace.
Author Unknown

2011-06-09T23:23:00.000-04:00

Sometimes it seems like there are way more questions than there are answers.

Some days you can feel the dark clouds rolling in and it's hard to find the light.

I never lose faith, and I know everything will be okay. I know that God is right there in the middle of everything. And He's never let me down. Still, some days are just rough.

On those days I can always follow my girl's lead.

She's finding the good.

And it shows.

This picture is a little blurry but I had to add it anyway~

check out that smile!

I'm off to pack. We are leaving in the morning for Pennsylvania to attend the commissioning ceremony for Justin's Masters program. So proud of him. He has worked hard, maintaining a good GPA while working full time and finding time to spend with his new bride. (Speaking of which, I am very, very late on the wedding post! Sorry, Mags. It is coming soon.)

Have a great weekend. I hope you are able to see the good. The light through the dark clouds. Keep looking, it's there.

Hugs~

Linda

The Good Stuff

2011-05-24T22:01:00.001-04:00

Some of the good stuff that's been happening at our house...........

A beautiful day walking for a good cause- March for Babies. As Lila was in the NICU for 7 1/2 weeks, March of Dimes is very important to our family. We walked with the team from my women's club. One of our members has a very personal connection to March of Dimes and we walked in support of her and her husband.

Lila had a great time!

The very first strawberry in our garden.

Helping Daddy with the garden

Playing with babies.

Italian Ice on a hot day

Playing Zingo with Mama on a rainy day

Justin and Maggie stopping by for a brief visit.

(Psssttt......we are waiting for Tiffani's visit! hint, hint)

An inclusion "Walk and Roll" promoting awareness and acceptance of all people with abilities!

Where Lila was making sure she was acting like one of the big girls. So cute.

She agreed to get her face painted- first time ever! She is so proud of herself in this picture.

Thankful~

Linda

Twice in one day.

2011-05-23T16:20:00.000-04:00

I hardly ever blog, much less post twice in one day, simply because I don't have that much free time on my hands. Today the little girl who NEVER falls asleep in the car and has given up her naps fell asleep in the car. On another day that might make me worry but not today. She is scheduled for her next IVIG treatment on Thursday so we're getting close. All the research I've done shows that kids usually have a pretty drastic drop-off in energy as they are getting close to their next treatment. Hopefully that is the reason for the mid-day nap. Check her out- she's such a sassy sleeper!

While she was napping I put together her end-of-the-year gifts for her private preschool teachers. I can't take credit for the idea as I got it off of our local Down Syndrome listserve.

I had to go to 3 different Target dollar sections to find the popcorn containers. Some candy, a trip to Costco for movie tickets, and ta-da! Teacher gifts are finished. : )

Must wake Lila up or she'll be awake until midnight tonight.

Linda

Ramblings........

2011-05-23T09:34:00.001-04:00

I was driving home from church deep in thought. All of a sudden I heard sirens so I immediately started looking around to make sure I didn't need to pull over. Coming toward me was a fire truck on the other side of the divider from me. As it passed me, I noticed that there were kids on top of the firetruck.

And then I remembered.

It was Open House Day at the local Fire Department featuring ambulance and fire engine tours, fire truck rides, shooting the hose, dog demonstrations, face painting and more. For some kids, that would be so awesome. For others, not so much. I can imagine our little girl on top of the fire truck having a great time until they turned the siren on. It would be all over at that very second. She would lunge toward me, clinging to my neck and shaking from head to toe. Yup, really awesome.

I allowed myself to feel sorry for me for a little while. I even went a little further- because sometimes one thing leads to another in my little mind. Like feeling that little pang when Lila was lying on the floor at ballet class last week instead of participating . So were some of the other kids, but it's not the same. Those kids were lying on the floor because that's what kids do sometimes. In other people's minds, Lila was lying on the floor because she has Down Syndrome.

I started thinking about the little girl that asked me why Lila talks so weird. An innocent question that made me want to cry. I held back the tears and responded, "She does talk differently, doesn't she? We are all different in one way or another." That answer seemed to satisfy her and she walked away, leaving me with my thoughts and tears.

I could sit and dwell on things like this all day long. I don't want to do that. Does it all bother me sometimes? Yes. I would be lying if I said no. But then I think of our sweet and feisty little girl who works her butt off to do things that come naturally to other kids. She never gives up, she just keeps trying. I love that about her.

Does she have it harder than some kids? Yes. Does she have it a lot easier than some kids? Absolutely.

Lila will probably require IVIG treatments for the remainder of her life. We might be able to spread them out a bit more as time goes on but right now she goes monthly for a 3 hour treatment. After they place her IV she watches movies and has a variety of things to play with. Is it great? No. Is it horrible? Absolutely not. Especially when you look around and see little kids getting chemo. Mothers nursing babies who are getting chemo. Teenagers who would love to be at school but they have to be home-schooled because of their chemo schedule. A precious two year old girl getting chemo. And I couldn't help but overhear the conversation taking place between her parents and the oncologist. Which chemo will give her the best chance at survival? No matter what the side effects are, that is the one we want.

In my mind- that is horrible.

As we were leaving the oncology center last month there was a woman walking out with a baby on her hip and a little boy walking beside her. The little boy was bald, had a large scar on the side of his head and his skin had the gray tint that is often associated with chemotherapy. He was vision-impaired, but was doing an amazing job of navigating his way through the hallways with his walking stick. As we walked up behind them and he heard Lila talking, he asked his mom, "Who is that?". His mom answered that it was a beautiful little girl. He said, "What's her name?". His mom said, "I'm not sure". I told them her name was Lila. His mom said, "Oh, she's beautiful and she has a beautiful name. She has the prettiest little flower in her hair too. I wish you could see her." By this time we were outside and I put my sunglasses on to hide my tears.

Our little girl has Down Syndrome. Our little girl has a health issue which requires regular treatment. Some days are hard. But believe me, this ain't nothin'.

Linda

Mothers Day 2011

2011-05-13T16:33:00.002-04:00

Mother's Day 2011 turned out to be a great day! I was a little worried about how the day would go as it was my first Mother's Day without either Tiffani or Justin. I missed them like crazy and it was very odd to be without at least one of them. Nick had figured that out wayyyyyyyyyy before I did, and he did a great job of spoiling me that day.

My gifts.....

Yes, that is J-Lo's new CD! (Don't judge.) Lila was so kind to get me a new watch and the new Jennifer Lopez CD. She also made me a little candle at preschool. Not a great picture to showcase that, but it is interesting that the candle is in there upside down. : ) Tiffani sent me a beautiful flower arrangement complete with my favorite flowers, gerbera daisies. Justin and Maggie donated to Project Home in my honor. Project Home is an organization that works to break the cycle of homelessness and poverty in North Philadelphia. They also sent a card with very touching handwritten notes from each of them. Not that it's about the gifts but the thoughts behind the gifts are the best.

I am so grateful for all four of my kids. I am also thankful that when we were blessed with the addition of Maggie to our family we also gained her family.

And we love her family.

We have spent the last four holidays with them- Thanksgiving, Christmas, Easter and Mother's Day. And it just feels right. There is no stress, there is no awkwardness. It's easy and it just fits. On Mother's Day Justin wasn't able to leave Pennsylvania because of finals but we got to see Maggie! (Tiffani was in Texas with my family. My mom and dad. Some of my brothers and sisters, nieces and nephews. It's hard to be so far apart but takes the bite out of it a bit.)

Maggie's little sister Katherine was dancing in a ballet, Cinderella. Lila loves ballet and she loves Cinderella so of course we took her. She loved it!

The ballet was excellent as Katherine did an amazing job as the fairy godmother. Lila watched the whole performance without fidgeting or trying to get up. She sat with her noise-reducing headphones on and paid close attention to all of the dancers, clapping like crazy when everyone else did. After the ballet was over, Maggie took Lila backstage to see Katherine. So Lila got her picture taken with one of the stars of the show!!

(Pardon the quality of the picture- I recently took a photography class and finally took my camera off of "Auto". Still figuring out what to do!)

After the ballet we had dinner with Maggie's family at their house. Hanging out on the deck on a beautiful spring day, enjoying a glass of wine together. The time went by too quickly and it was soon time to go home and put Lila to bed.

I am incredibly blessed. I know I say it all the time, but the thing is....... I feel it all the time! I am so thankful for the gift of my family.

Linda

7 years ago today...................

2011-05-02T08:14:00.000-04:00

I married my best friend. I am so thankful for him and for our love.

Happy Anniversary Nicholas!

Linda

2011-05-01T21:49:00.000-04:00

I love spring.

I absolutely love looking out the kitchen window as I'm doing dishes so I can watch the little nubs on the tree branches budding into young leaves, a little bit each day.

I love that the yellow flowers in front of our house always show up first.

The tulips follow shortly behind. Lila loves to smell them all.

I love being able to leave the sliding glass door open so that I can listen to the birds singing and the kids playing. What I love even more is when we are outside playing. Sidewalk chalk, picnics, bike rides, bubbles, I love it all. And this year, we will have it all. More now than ever, Lila wants to be outside. She loves it all too.

First bike wreck ever, and not too happy about it.

Spring is a Flower/Garden Show with great friends. Where the grown-ups enjoy the flowers.

The kids enjoy a little fishing game.

And picking dandelions is the highlight of the day.

Spring is a backyard gathering so the little ones can play while the moms catch up.

Spring is represented in the little flowers on Nick's strawberry plant, and in the lettuce leaves peeking up in the background.

Spring is having fun with shadows as the early evening sun pours in through the blinds.

Spring is new life, and the opportunity for a new look at life.

Happy Spring!

Linda

The Learning Program

2011-04-12T22:07:00.000-04:00

Lila loves her Learning Program books! Almost as much as she loves french fries!

For more info about The Learning Program, click The Learning Program.

Prom Wishes 2011

2011-04-12T20:12:00.000-04:00

I am honored to be on the board of an amazing organization, JWCL~ Junior Women's Club of Loudoun. JWCL is an active group of women volunteers in Loudoun County. We volunteer. It's what we do. And I absolutely love that.

Prom Wishes is my favorite club event of the year and I was thrilled to be one of the co-chairs this year with my good friend Kathy. At this event, local girls are invited to come and select a dress and accessories for prom, free of charge. There is no catch, and you don't have to do anything to qualify. All you have to do is show up.

A recap of this year's event:

People from all around our area donated dresses. Donations were accepted at all of the local public libraries. The Marriott donated a conference room for the "store" and 3 guest rooms to use as dressing rooms. The Holiday Coalition donated racks for the dresses. It's a joint effort, and it's amazing.

It started out like this. Mass chaos, in our basement. We started with a little stack of dresses and then they began piling up.

After a month of collecting dresses, it was almost time for the event. There was a dress sorting party at our house 3 days before the event. Kathy and I dressed up in some of the "alternative" dresses and had a little bit of fun with them!

After the sorting party was over, the dresses were somewhat more organized.

The night before, we loaded up all of the dresses and took them over to the Marriott.

The racks were brought over from Holiday Coalition (that's a story for another day) and we were ready to set-up. It was a lot of work, and a lot of fun.

(Sorry about the butt shot, Kathy)

After a few hours of working together, we were ready!

The event started at 10am. When Kathy and I showed up at 9am there were already 10 girls in line!

Ready to go- Becca and Trina at the registration table

First shift volunteers

Co-Chairs:

By 9:45am the event was in full swing. I wish I could post a picture of what it looked like when the room was packed with girls but I didn't ask permission to put their pictures on my blog, so I better not. You'll just have to trust me- it got pretty crazy in there. : )

Around noon Kathy, her friend Lisa and I took a break to eat lunch. We were sitting at a table in the hotel lobby when Becca, one of our club members, came up to us and said, "We are at 96- almost up to 100 girls." We were so excited! As much as Kathy and I wanted the event to be a success and run smoothly, what we wanted most is for a lot of girls to show up and find a dress that they loved. You never know how many girls will show up. It was a rainy, dreary day and it could have gone either way.

As we sat there eating our lunch I kept an eye on the door so I knew what was coming when Becca came back over. She said, "We just hit 100. And it's a girl from one of the special education classes here in the county. I thought you would want to know." I looked over at the registration table, tears filling my eyes. For so many reasons.

We finished our lunch and went back to work. I set out to find the 100th girl, Cassandra, and her mom. I found them by a rack of dresses and went over to introduce myself. I told them that I was one of the co-chairs and that I had a little girl with Down Syndrome. I was so excited that she was the 100th girl to attend our event!

She found a dress! : )

When I got back from checking on Cassandra, I got a little surprise. Lila and her daddy stopped by to say hi!

One by one, girl after girl found a dress. 110 lucky girls found dresses that day. (That blows me away!)

Less than 24 hours later, it was time to tear everything down again.

With a little help from our unofficial "men's auxiliary", we got it all done. : )

We had 120 girls at the event, so we exceeded our goal of 100. There were over 800 beautiful dresses for the girls to choose from. The leftover dresses were given to a local high school drama department, a non-profit drama group and a church in West Virginia that hosts an event for a community in need.

A successful event indeed.

Time to celebrate with the second shift..................

I am honored to be part of such an inspiring group of women who are passionate about helping others and giving back. I am also grateful to my awesome husband who not only supports my volunteer work but encourages me to do it.

Lila update coming soon.................

Hugs~

Linda

Look what I can do!

2011-03-24T17:25:00.000-04:00

Really, it's look at what my kid can do!

Miss Lila is officially a cutter! (No, not that kind of cutter.) She is using scissors to cut a straight line- and doing a fine job! This may not be a big deal to some but at our house it's kindof a big deal. About a year ago, Lila's hands were so small that she had to use adaptive scissors. 3 weeks ago, Lila wasn't able to cut a straight line. Or maybe she was able, she just didn't want to. She seemed to be fatiguing very easily and would just lay her head down and say she was too tired to cut. Our OT gave us "cutting" homework and asked us to put a reward system in place. If Lila wanted to watch a movie or have one of us read a favorite book to her, she would have to practice cutting first. We started doing that and guess what? It worked! Her OT was thrilled with her progress yesterday. We have now moved to cutting curves instead of straight lines. Woot!

Guess who's watching Dino Dan right now?

Stuff

2011-03-14T12:16:00.000-04:00

We had a fabulous weekend. The weather was beautiful so we scurried around inside to take care of our "house stuff" so we could go outside and soak up the sun.

Lila played ring around the rosie with her monkey while she waited. We all fall down!

We went to the park, then to get ice cream. Well, actually Lila and Daddy had ice cream. Mommy had a sample size spoon of coffee ice cream- just enough to satisfy that little craving. I think Weight Watchers would approve. HaHa

Baby knees- is there anything better? I know Lila's not a baby- but her knees still have those cute little baby dimples.

Playing ball with Daddy- she's checking out how far she hit the ball.

Flashing those baby blues.................

As for Miss Lila's health, we saw the hematologist on Friday. It looks like Lila will need to have IVIG treatments for a while. She will be receiving one 4-hour treatment once a month. After six months we will reconvene to take another look at everything. For more info on IVIG treatments, http://www.americanoutcomes.com/ivig-therapy-faq.php. If anyone has experience with IVIG treatments, will you please send me a private message? I've done quite a bit of research but I have a few questions. My email address is lindanargi1@yahoo.com. Thanks!

Happy Monday..........

Linda

P.S. Anyone have any tips on the new blogger editor? I'm having a hard time figuring it out. (No shock there. ) I can't get my spacing right, and I had about 6 more pictures for this post but blogger kept rotating them. I couldn't figure out how to correct that.

Our little Valentine

2011-02-25T09:23:00.007-05:00

Lila loved Valentine's Day this year. "Happy Balentymes Day!" She loved saying that so much, she just kept saying it over and over. She had two Valentine's Day parties, at each of her schools, and she wore the same shirt both days. Different undershirts and different pants, but the same "LOVE" shirt. Shhhhhhhh..................

She loved handing out the Valentines that we made for her friends.

After school, we had a fabulous gluten free lunch (LOL) then headed out to dance cwass later that afternoon. Lila wore our favorite tutu and brought flowers for Miss Kristen, her teacher.

After ballet, we headed home and Daddy met us there. With flowers in hand.

Mommy got flowers too, so she was happy.

Daddy got cards and seafood linguine, so he was happy.

The End.

Brief health update

2011-02-24T10:29:00.004-05:00

I have 3 half-written posts that are waiting to be finished, so hopefully this one will actually make it to the part where I hit "Publish Post". LOL

The Infectious Disease doctor finally called me last night. (Which was fabulous since their office has had Lila's lab results since Monday. But whatever. )

Lila does indeed have a suppressed immune system, which we already knew. She has low IgM's and she is also on the very low end of normal range on the rest of the immunoglobulins: IgA, IgG, IgE and IgD.

IgM antibodies are the largest antibody. They are found in blood and lymph fluid and are the first type of antibody made in response to an infection. They also cause other immune system cells to destroy foreign substances.

The doctor said that she is concerned about Lila's IgM results and would like to re-test her in a month. I never asked why she was concerned and she never said. FYI- if you google low IgM, which of course I did, the first three results are IgM, IgM blood test, and IgM leukemia.

I am doing some research on my own and reaching out to some of our DS community members that unfortunately have experience with leukemia and their kids with DS. Statistics show that one in every 95 children with Down Syndrome develops leukemia so we know that Lila is at a higher risk than people without Down Syndrome. That being said, Lila has had repeated infections but lacks any of the other symptoms that seem to go along with leukemia.

We are still waiting on the results from 2 more lab tests- oxidative burst and natural killer cells. As soon as I have all of the results I will fax them to Lila's hematologist and see what she thinks.

In the meantime, we are on day 20 of a gluten-free diet for Lila and we will see if that gives her immune system a boost. We haven't noticed any changes at home but it's early in the game. We still feel like it was the best decision for Lila and thankfully the decision is supported by her teachers, therapists and doctors.

Whatever is going on in her little body, I am thankful that we have faith in a God that loves Lila even more than we do. The fact that she is alive today is nothing short of a miracle and we know there is a beautiful purpose for her life.

Please say a little prayer for her, that she will be well and that we will find definitive answers about what is going on in her little body very soon.

Hugs~

Linda

Gymnastics.....wayyyyy better than PT!

2011-02-11T09:08:00.004-05:00

We took Lila out of private PT and enrolled her in dance and gymnastics. She always has a great time at dance class but I'm starting to think that she loves gymnastics even more. (And it's so cute when she tries to say the word "gymnastics".)

You can tell that the teachers in the class enjoy working with kids, and they make it so fun! All the kids always look like they are having such a good time. They do organized activities on the mats, then let the kids run around and play.

I love it because Lila has become so much more confident. Eighteen months ago, before she started "sensory-focused" OT, there's no way she would have enjoyed this class. She would have been on the sidelines watching the other kids. Now, she's right in the middle of everything, sometimes taking more chances than I would like her to. LOL

Oh, and I also love it because the parents get to watch from outside the room, enjoying adult conversation. : ) Is it wrong to say that is the best part for me?

One good thing about Lila being on antibiotics for almost 3 months straight is that she hasn't missed any classes~ either dance or gymnastics.

I've been thinking a lot about Lila's health issues and how she hasn't made much (or any) progress in school this year because of her health and a bad situation at her former public school. It has really gotten me down. It seems like she was making such great progress and then, BAM. In some ways, she basically just stopped. But when I really think about it, I see a few areas in which she has progressed.

If Lila didn't have Down Syndrome, I wouldn't have met most of my awesome friends in this area! And when she struggles with and overcomes certain things, that gives me the opportunity to share our experience with others and hopefully help them on their journey. And the list goes on.

Focusing on the positive today. There's so much good stuff.

Hugs~

Linda

A little health update....

2011-02-09T20:52:00.003-05:00

Lila has been struggling with repeated infections since the beginning of November. She has had 4 sinus infections, strep, 2 staph infections and walking pneumonia. After her second staph infection in 28 days, I decided to make an appointment with an infectious disease (ID) specialist. They were shocked that we did not have a "referring physician". When they asked how I found their office, I told them that I had put infectious disease pediatrics into Google and their name was the first one on the list in our area.

After reviewing Lila's recent health history, the ID stated that something was attacking Lila's immune system. I went back and forth between feeling relieved that I had taken the situation into my own hands by following my gut and feeling sick to my stomach that something might be seriously wrong with our daughter. In the back of my mind I was hoping that the doctor would act as if she had no idea why we were there and send us on our way, telling us to follow up with our pediatrician. She did not.

After a thorough examination, the doctor said that Lila was at the beginning of another sinus infection. I told her that Lila was on day 9 of a 10 day antibiotic for a sinus infection. (During days 3, 4, 5 and 6 she was also on an additional antibiotic combined with a steroid for walking pneumonia.) She told me that the antibiotic wasn't strong enough, and wasn't for a long enough period of time, to knock out a severe sinus infection with the added complication of walking pneumonia. She put Lila on a stronger antibiotic, this time for 14 days instead of 10. (This also happens to be the antibiotic that gave Lila such severe diarrhea that she ended up on an IV in the ER for 7 hours as a result of dehydration and low blood sugar a little over a month ago) She asked if we would be willing to try the antibiotic again, stating that because Lila is allergic to 2 other families of antibiotics, we are running out of options. I hesitantly agreed, not knowing what else to do.

Tomorrow we will have Lila's blood drawn for a long list of tests. Right now we are just ruling things out, and I have to keep that in mind. It just sucks that the tests are for HIV, lupus, and a whole mess of other lovely options. (I lied, Kelly. I said that I wouldn't look at the list but I couldn't stop myself. I had to know.)

We will have a follow-up appointment with the ID in 3 weeks. Until then, we wait. And pray. And try to keep Lila as healthy as possible.

In the meantime, we have put Lila on a gluten-free diet. I have wondered for quite a while if she might have celiac disease. She has had 2 blood tests and both were negative, but sometimes those tests are inconclusive. She definitely has something attacking her immune system, which celiac disease does. Her behavior has also been a bit out of control which can also be another sign of a gluten intolerance. Thanks to a little nudge from my sister Donna, we decided to take gluten out of her diet for at least 6 weeks to see what effect, if any, it has on her health and behavior. (Wouldn't it be awesome if the answer was as simple as a gluten intolerance?)

When I told her teachers and therapists about Lila's new gluten-free diet, I expected some push-back but they have all been 100% supportive. They were giving me reasons why it's a great idea! And thanks to my awesome friend Michelle, I have learned so much about celiac disease in the past few days. I am so grateful for her knowledge and support.

Now you know what we know! I will post an update as soon as we know more. It will be nice to have some answers instead of worrying about all of the unknowns.

Please say a prayer for Miss Lila. She has been not felt well for quite a while and we are anxious for her to feel better soon.

Hugs~

Linda

Birthday party fun

2011-02-04T21:24:00.014-05:00

Lila has missed school, church, birthday parties and other fun get-togethers because she has been sick on and off for almost 3 months. But we made the most of the brief and healthy interludes! She was able to attend birthday parties for two of her friends. And that makes her mama's heart very happy!

Roxy's birthday party was a lot of fun! Lila got to build a bear!

She loved their new moon bounce! Oh, how thrilled I was to see her coming down this slide. Because that meant she was able to climb the "rock wall" to make that happen. : )

Always the lover of music, she escaped from the party happenings to play a little tune on the piano.

I just love kids and cupcakes. Such a fun combination!

The party ended with a book exchange. And nothing's better than a new book being read to you by one of your favorite mamas!

Party # 2

Payton's party was a fun dress-up party. Lila loves anything girlie, so dressing up in one of her favorite tutus just added to the excitement of getting to come to the party!

And although it took her a few minutes to warm up,

She was soon having a fabulous time!

Again, kids and cupcakes. Just love the combo. The cupcakes at Payton's party were huge! Lila was not one bit intimidated, though. I thought this one was too pretty to eat but it didn't stop her!

She even let one of Bethany's cousins put some gloss on her lips. (Which I predicted wouldn't happen. Wrong again, mama! LOL)

Lila tried her hand at the limbo.......

She even got back in line to do it again!

Back at Roxy's party, we tried to get a group pictures of all of the kids. Fat chance. Here's how it all went down:

And that is what happens when you have a crazy idea such as that. Complete chaos.

In other news, Justin and Maggie are married! That's one of Lila's favorite things to say now. "Justin and Maggie got maweed! Me, Lila, in wedding!"

I'm almost finished with my wedding post. Still waiting to borrow a few pictures to finish it off. It was a fabulous time and I can't wait to share so that I can relive it all. It was precious and happy and it flew by way too quickly for me.

Until next time, here is a picture of Lila diligently trying to teach Pink her numbers. She cracks me up.

Hugs~

Linda

The allergic reaction

2011-01-06T18:23:00.003-05:00

Lila is having an allergic reaction to an antibiotic.

Poor thing. Clearly, she is not amused.

In other news, Justin and Maggie are getting married in 9 days. Woot! So excited!

I have promised to update my blog more often. That wouldn't take much, would it? Seriously, though, after the wedding I have many pictures to post and much to write about. Lots of catching up to do!

Next time you hear from me we will have added a new member to our family. Yay!

Hugs~

Linda