Blessings From Aubrey

Still here:)

2012-01-09T22:41:00.000-06:00

It has been awhile....but we are still here! Life is busy and there are so many days when I wish that the posts that I write in my head while sitting at stop lights or feeding baby or folding laundry could actually appear here for you!

We have been busy every weekend (and week for that matter) since Thanksgiving! We have had lots of company and usually holiday business.

And because we had relaxed a bit and thought that we were doing so well with Aubrey's health....she decided to throw in RSV and Pneumonia right before Christmas! I don't think there is ever a GOOD time to have sick kids, but I'm certain that the week before Christmas is the WORST time. We then spent a week visiting family and friends....home for 4 days, then off to NJ this past weekend for more family and a memorial service for GG Johnson. I'm home for 4 days then off to MN again! Just cause the holidays are over doesn't mean we aren't still busy around here:) I'm just glad that this trip is just me and Emmie and that I don't have to pack up for 7 anymore!

(if you are waiting for your Christmas card still.....this would explain why and I'll let you know that I'm working on them this week:)

I'm so behind on reading blogs and emails and phone calls and I resolved today that I will never catch up and so there is just a need to move on and stop thinking that I can catch up on blog posts and reading and what not. Hopefully this will give me a clean slate to start just posting again:) We got a lot happening around here and I want to share....

Potty Training and Thumb Sucking......coming soon!

Aubrey talking

2011-11-10T09:32:00.001-06:00

While Aubrey doesn't have a lot of OUR words down yet....she certainly has a lot to SAY.
(it is a long video! and the marching in the beginning must be a song she is learning at school)

Make a video - it's fun, easy and free!
www.onetruemedia.com

Typical Saturday

2011-11-05T23:50:00.000-05:00

Just a regular old Saturday around here. Haircuts for the big girls....

Baths....

And homemade ice cream!

Happy Halloween 2011

2011-10-31T21:57:00.000-05:00

Another great year of trick or treating. Just a couple of us from tonight. Unfortunately the day got away from me and my costume just didn't get put together, so I'll have to get started just a little bit earlier next year, but I still had a great evening watching the girls and being with friends.

Here is our Peacock, Rapunzel, and the Harry Potter Crew of Hagrid, Hedwig the Owl, Hermionie and Ginny Weasly

Schools: Part Three - Success!

2011-10-30T23:55:00.000-05:00

Every morning, when I get her up, I ask her, "Are you ready for school?"
Then I ask again as we get dressed and eat breakfast and put on shoes and as we head out the door, with our backpack and lunch in tow and again as we are getting in the car and as we approach the school.

In the beginning, she did nothing. Then she would sign "ready school" when it came into view. Then it was at the corner when we got off the freeway. Then it was getting on the freeway. And now she signs "READY" when I get her out of bed....most days!

When she missed a whole week because she was sick, she didn't once ask about school which I thought was strange. On the day she finally started to feel better, we got in the car to go pick up other kids and she signed, "ready" and I asked for what and she signed "school' with a HUGE grin!

Once Aubrey got used to school and the routine of everything, she has LOVED it!

She could ride the bus...but I don't feel like she's ready for that step yet...and neither am I. I feel like it is really an important time to be with her in the morning and talk about the day, and especially to see her right as she is finishing her day at school and things are fresh on her mind from the day.

Her teacher does a journal with her each day and she keeps it in her backpack so that we can see it at home and on the weekends, we journal so they can talk about it at school. It has been a great tool for communication back and forth from school. This was one of those things that we requested from the teacher since she can't actually tell us what she does each day. She LOVES to look at the journal and "talk" about each of the entries. I sometimes find her just sitting on the floor by her back pack reading her journal. She is very proud of it.

There is lots of "HOMEWORK" aka Family Activities that we do at home with Aubrey to enrich her preschool experience. We have helped make a book about our house with pictures to share with the class when they talked about the three little pigs and their houses. We have made a family flag to share during the family themed week. We hang these projects up on the kitchen wall. Aubrey likes to go over and look at her things and talk about them. I especially love when they send pictures home from school and she can show me what she did that day. (black and white 8.5x11s on bottom left)

Preschool is a lot of work for us! But when I see how much she is enjoying it and learning, I wouldn't have it any other way and I know that someday, she'll actually be able to TELL me about her days all on her own.

A little more about Pearson: It is like a typical preschool program but is HEAVILY language based. All the kids in Aubrey's class (3 others right now) have hearing aids. She is in a TOTAL COMMUNICATION classroom which means that the teacher speaks and signs everything. There are two classrooms like this and two where there is no sign language (in that classroom not everyone has hearing aids or such large speaking delays). It is a full day program from 8:15am - 2:15pm. We have opted to not send her in the afternoons so that she can get a long nap in at home. The speech therapist is IN her classroom twice a week and often teaches lessons. She is receiving some physical therapy, about twice a quarter. She is receiving occupational therapy as well.

Schools: Part Two - Process

2011-10-29T22:47:00.000-05:00

(if you missed part one it is here)

Once we had sorted out, WHO we needed to meet with and contact, we were in business. Aubrey is assigned to a "home school" in the school district that we are zoned for (not in the city that we actually live in). She will always be assigned to that school. We also have a school district representative....her name is Allison and she has been the most helpful to us. She is the Early Education Coordinator for the district.

At Aubrey's 2.5 year ECI meeting, we talked for a bit about transitions to school, our concerns and wants for Aubrey (and our own) and about the process. Our next step was to have our ECI coordinator contact the school district and set up a meeting with the Early Education Coordinator. She explained the entire process and even took us on a school tour and answered a million questions.

We were assigned to our home school and a transition teacher. Her job was to evaluate where Aubrey was at through an interview and then through some testing, and set up any other testing, based on the services that she was getting through ECI. The testing she did was lots of developmental things like stacking blocks, naming shapes and colors, counting and that sort of thing. The test was scheduled for 12:30pm (right in the middle of nap) and in an boardroom at a HUGE table. Things did not go well! It was a good thing they allow parents to answer by interview and not only on what she could "perform" for them.

We also had a speech therapist come, who after 5 minutes, decided she was done, because Aubrey was "non-verbal"! I could have saved her the trip by telling her that Aubrey actually SAYS about 5 words and signs all the rest!

We saw a physical therapist as well. She was completely impressed with Aubrey's abilities and we were proud to show off all the hard work she had been doing.

It should be stated that in ECI, a child can receive services based on a diagnosis, such as Down syndrome. In school, you only receive services if you are unable to "function" in the class and throughout the routine. Since she is walking and can do all those physical things required to function in a classroom, we assumed she wouldn't get PT. And since she didn't receive Occupational Therapy through ECI, they didn't test her. Our PT covered both areas. (she is getting PT at school now and also OT--more on those tomorrow)

After all the testing, they set up her initial ARD meeting. ARD stands for Admissions, Review and Dismissal. Basically a meeting to admit her to school, review frequently if she needs special help at school and dismissal which happens when they no longer need services (for Aubrey it will be graduation from high school). It is held at her "home school".

There were a lot of people at that meeting. It is made up of all the people that tested Aubrey (3), the school principal, a preschool teacher, a general education teacher, 2 people from the Regional Day School for the Deaf, the District Early Education Coordinator (Allison). These people were "required" to be there. We are then allowed to invite anyone else that we feel knows Aubrey well and can speak to her needs, so we invited our ECI service coordinator as well as speech therapist.

It was a two hour meeting that outlined each test and then set goals for her in the coming school year, and IEP or Individual Education Plan. It was the committees recommendation that she attend the Regional Day School for the Deaf to address her language needs. The home school classrooms are not taught by teachers who know sign language, beyond the very basics, and wouldn't be TEACHING her any so that she could further her communication skills either. And non of the kids would know sign language and be able to talk with her....she would be all alone in the classroom! It was a very scary thought.

So she would be attending Pearson! (the official name for the Regional Day School) And we were so pleased and relived that they agreed to send her there (her home school district actually has to pay for her education there and it is not a frequent recommendation...so we are thankful). If there is anything that I learned through this process it was to ASK lots of questions and NOT to be afraid of pushing for things. We knew Pearson was going to be the best place for her and we would have pushed for her to go there if they hadn't recommended it.

Tomorrow: Preschool Experiences

Schools: Part One - Why We Moved

2011-10-28T20:43:00.000-05:00

Before Aubrey was born, we moved from the "Newberry" house...to the "Tyler" house. It was the right move for our family. We loved our city, so we stayed, but our growing family needed a bigger house. So we moved a couple miles north, to a much bigger house, with a much bigger yard. I loved that house.... But when we found out that Aubrey had Down syndrome, we both knew that we wouldn't be staying in the "Tyler" house.

We have friends that had used the special education in our city....and it wasn't the best. Neighboring city....had the best around. Every parent wants the best for ALL their children. Since our other girls go to our church school, they wouldn't be affected by a move. But moving, might make all the difference to Aubrey. So wanting the best for our girl, we decided we would move for sure before Kindergarten, but probably before she turned three.

Fast forward....Aubrey is almost two and I have officially quit my job to stay home and manage the house and schedules and the Lord blesses us with the news that another one is on the way! I knew we would never be able to keep a clean house with a new baby in the house. So we put the house up last fall, in the hopes of moving before Baby arrived in January. We moved right before Thanksgiving.

Here is where our story gets a little complicated. We were blessed with a great ECI team in our old city, and they all agreed they would keep Aubrey since they had had her since birth and it wouldn't be too long before she turned three. So we have ECI from City A.We now live in City B, but are zoned for schools in City C
( our desired school district), and because Aubrey has a hearing impairment, she was eligable to go to the Reginal Day School for the Deaf in City D. It couldn't get any more complicated and city to city is so different and they don't work with each other much.

Our ECI Auditory Impairment Teacher - who happens to now work at Aubrey's school:)

In then end, we are still so glad that we moved here. We LOVE our new house and neighborhood and the school thing....has all worked out.

Our ECI Speech Therapist

(coming up, ARDs and IEPs and where she goes to school)

Good Day

2011-10-27T23:19:00.000-05:00

It was a good day today....make that a great week for Aubrey at school. We had another ARD meeting this afternoon for her and that went great too! And I would love to write more about that....but it will have to wait...because it is soooo late.....and the RANGERS are trying to WIN the World Series right now:)

WW: Good Bye Summer

2011-10-26T22:30:00.000-05:00

(this should have been a GO RANGERS post...but that will be delayed too:)

Growth

2011-10-25T22:45:00.000-05:00

If someone had told me 10 years ago that I would be a mom of FIVE and they would all be girls and one of them would have special needs....I wouldn't have believed them. I think as people, we under estimate ourselves all the time. I NEVER would have thought that I could do all that I have done since Aubrey was born. I have more growing to do...but she has put us on a new and different path of growth.

I saved this quote awhile ago, because it is a good reminder for me that I am strong. And that no matter what comes my way, I"m just gonna face it. We've been through a lot with Aubrey and I know that there will be more challenges in the future. But because of her, we are stronger more confident people and parents and we have learned patience and understand and we're gonna keep learning and growing.

Fairness

2011-10-24T22:44:00.000-05:00

Let's just get this out of the way: Life is NOT fair. And my kids are learning that among other things. It is not fair that Aubrey had open heart surgery at 4 months old, and it isn't fair that they get dragged along for lots of appointments sometimes. But they are learning, that life isn't fair. And while sometimes it feels like a lot of our schedule revolves around Aubrey and her schedule and needs...Monday's are not about her....they are reserved for someone else.

Monday's are for Ella's ballet!

(Ella is on the far left in the long sleeves)

And if you aren't Ella, then your place is in the hall....or doorway if they leave the door open and you don't distract the class.

My little girl, watched carefully and took it all in. I could see the wheels turning in her head as she watched and I have no doubt that one of these days....we'll see her moves too. They're coming, but in their own time:)

If you know Ella, she is NOT shy. She will and DOES talk to anyone and everyone. But at ballet....she is shy and quiet and nervous. I don't know why except that I have to talk her nerves down every single class. It is foreign to us that she is so nervous about this.

Ballet is hard work for her. And I have to reminder her that all things take hard work and practice and very few things will come easy. But if she loves it, she will succeed and if she tries, that is ALL that matters. My girl loves ballet and tries hard and she is getting better week by week.

She is a good listener (shocking, I know:). She watches carefully and only when confident, does she display that she can do it.

And sometimes, when she's feeling confident and good about herself, she lets herself get silly and loosen up and enjoy that grin in the mirrors!

And that little spectator, who spent on HOUR sitting in the doorway....

Was having a hard time just watching. She kept scooting a little further in, but was always mindful when I reminded her ONLY in the doorway. And she would flip her legs out behind her, and slide herself out and start her scoot all over again.

Watching is HARD work!

Life isn't fair and it is hard work and one needs to be patient, but the rewards....are tremendously wonderful when they finally do come. (especially covered in orange glitter:)

Being Aubrey's BIG sister

2011-10-23T23:00:00.000-05:00

I was recently asked, "so what do the girls think about Aubrey having Down syndrome?"

When we brought Aubrey home from the hospital...we sat the girls down and told them that she had Down syndrome and what it might mean. (they already knew about her heart) Alice was 6, Kate was 4, Ella was 2.

Water on a ducks back....they didn't care....they just wanted to get their hands on her! I figured that they would ask more when time went on. So far they haven't asked much. They attribute all of her needs to her physical problems. She doesn't talk, because she can't hear as well, which in turn is why she gets to go to preschool even though she is so little. She is little because she had heart surgery. And in some respects they are right on. Aubrey's whole preschool class is there because they have a hearing impairment and speech delays and none of them have Ds.

She is just Aubrey to them...and they see love and beauty and sisterhood. I wish we could all see people with disabilities this way. The world would be a better place. It is an open conversation and when they have questions they ask and when they don't....they don't.

I have no doubt that someday, they will realize what it means to have a sister with Ds. Their relationship with Aubrey will be different than it will be with their other sisters. DIFFERENT....not bad, or worse, just different. And I don't know what that means....we won't know til they grow up. What I do hope is that they have a wonderful bond like me and my sisters have and that they ALL worry about each other and stick up for each other and take care of each other.

Something I do worry about is where Aubrey will live. Obviously she would always be welcome in our house....but what if we couldn't take care of her or something happened to us. I wonder if her sisters would take her in. Which one would step up? I hope they would fight over having her come to live with them:)

Do they always love being her big sister? NO! They hate being dragged to appointments (especially the older two) and they don't always want to be helpful with her. I guess that makes them like everyone else! But for the most part, they are her biggest cheerleaders and always wanting to learn signs and hear about her school and stuff.

This weekend at the Forensics Fair at school, Alice did try to "sell" Aubrey....but she tried to sell them ALL.
You know that poem by Shel Silverstein "For Sale"?

For Sale

One sister for sale!

One crying and spying young sister for sale!

I’m really not kidding,

So who’ll start the bidding?

Do I hear the dollar?

A nickel?

A penny?

Oh, isn’t there, isn’t there, isn’t there any

One kid that will buy this old sister for sale,

This crying and spying young sister for sale?

Alice changed it to FOUR....and had a sign to hold while she recited the poem. It was funny and she did a great job. And while some days I think she would like to sell her sisters off....most days they come home and just love each other up!

I love how she drew each sister on her sign and the "I'm not kidding!"

So there you have it....having a little sister with Down syndrome....No Big Deal!

Buddy Walks

2011-10-22T23:47:00.000-05:00

I am including a post about Buddy Walks, so that those who are not familiar with them, can be. I didn't actually know about the Buddy Walk until Aubrey was over 1. We've not had a chance to walk in one yet. Seems every year we have sick kiddos. We're really hoping to this year. Many states hold their walks in October, very fitting:) However, Dallas likes to hold theirs in November, when it is much cooler and more enjoyable to walk outside:) These walks help promote awareness and set up programs that help those with Down syndrome and so much more. Here is a bit about Buddy Walks.

The Buddy Walk^® was established in 1995 by the National Down Syndrome Society to celebrate Down Syndrome Awareness Month in October and to promote acceptance and inclusion of people with Down syndrome. Today, the Buddy Walk program is supported nationally by NDSS and organized at the local level by parent support groups, schools and other organizations and individuals.

Over the past sixteen years, the Buddy Walk program has grown from 17 walks to nearly 300 expected in 2011 across the country and around the world. Last year alone, 285,000 people participated in a Buddy Walk! They raised more than $11.2 million to benefit local programs and services as well as the national advocacy initiatives that benefit all individuals with Down syndrome.

The Buddy Walk is a one-mile walk in which anyone can participate without special training. It is an inspirational and educational event that celebrates the many abilities and accomplishments of people with Down syndrome. Whether you have Down syndrome, know someone who does, or just want to show your support, come and join a Buddy Walk in your local community!

Find a walk near you by following this link.

Best Place for Afternoon Snacking.....

2011-10-21T22:59:00.000-05:00

UNDER the kitchen table...of course:)

Aubrey is such a good big sister offering to actually share her beloved snack with Emmie. Good today because it was veggie stix....bad yesterday when I was fishing PEANUTS out of her mouth from the trailmix she was sharing (Emelia may or may not have enjoyed an m & m too before I could fish it out ..only evidence was a blue mouth:)

Still sick....

2011-10-20T23:17:00.000-05:00

For us, one of the biggest problems with Aubrey is her immunity. Kids with Down syndrome are more likely to get infections that affect lungs and breathing and they also tend to take longer to get over them as well....Story Of Our Lives!

Heart Surgery: 3 weeks in hospital....came home on oxygen.
2nd Winter: Got Pnemonia and RSV (followed by various other viruses for weeks), hospital for 8 days, came home on oxygen for almost a month.
3rd Winter: Got Flu, stayed a week and had the hardest time getting her OFF that oxygen.

Anytime she is sick....it is a long road back to health. So much work to keep her healthy, but so much easier that dealing with her when she is sick and trying to regain health.

She has a fragile immune system and we take that very serious...and sending her to preschool, my main concern was her health and ability to stay healthy. She missed what was supposed to be her first day of school in September because she had a flu bug and now she has missed a whole week...wondering if her whole year will be like this....and if she will ever have a better immunity to germs.

Since she was running a fever still yesterday we went back to the doctor. Her ears have ALWAYS been clear. 1 ear infection at 5 months and 1 other time she had some fluid. That is it. He said she was starting to get an ear infection, so it called for antibiotics. Many kids with Ds have lots of ear problems and infections and often require tubes. We have been lucky there. We are hoping that is the end of the fever....but the cough and snot are still pretty bad. Keeping on top of our nebulizer treatments and vitamins and trying to keep her eating and drinking....she's down 2 lbs since her birthday:(

Hoping to kick it this weekend and send her back next week....

WW: Bathtime

2011-10-19T22:39:00.002-05:00

Feeling Better

2011-10-18T23:07:00.000-05:00

Hey guys....it's Aubrey!

I'm feeling better today and so I'm staying up late and taking over the blog to give my mommy a break. She has been taking good care of us this week. I'll spare you the before pictures! My nose isn't running so much and getting stuck in my hair, which means I don't have to take so many baths each day anymore. And my pink eye is clearing up, so my eyes don't get glued shut when I sleep anymore....that can be scary!

I was kind enough to share my pink eye with Emelia first...she doesn't like glued shut eyes either!

I thought that my mommy forgot to give me my medicine today....so I decided to help her out a bit.

Is it this cup Mom?

No?....Let me see....

It must be this one!

Sluuuuuuuuuuuuuuuuuuuuuuurp! Yup....this is the one!

No? Are you kidding me....it's this white one?

Good thing you're around Mom to figure this out!

Since I"m fever free....can I go back to school tomorrow and get out of your hair?

YOU BET BABY GIRL!!!

Sick Kids = Repost

2011-10-17T22:09:00.000-05:00

Aubrey has a pretty bad cold and is still running a fever. We went to the doctor this morning and the GREAT news is that her lungs sound good....bad new is that she has pink eye! When she woke up this morning she was screaming (I usually hear her talking and just go get her....she rarely cries to be gotten). I think she was scared cause her eyes were GLUED shut from all the over night eye goop. She is much better tonight after two doses. More bad new....Emelia woke up from her afternoon nape with goopy eyes, so we are treating them both. She only has it in one eye and it is so puffy that she can hardly see, poor girl.

So..............that calls for a repost from last year about her hearing aids. She has had them for a year now and it is going well. She doesn't wear the strap anymore. If she takes them out she is really good about giving them to us. She is much more "chatty" and we have heard some new sounds, especially since school has started. Still not a lot of actual words, but that will come....in it's own time. We are still working on S.E.E. sign language and trying to keep up with everything she is learning at school, but I'll try and touch on that another day.

For now....a repost on hearing loss:
Hearing loss is a new language to us...and has not been an easy one. It comes with more terms and lessons to be learned...because you have to understand all that goes with it.

And then you get the equipment and there is more learning about how to take care of it and treat them and clean them and keep them dry...oh, and in her ears:)

All that stuff was easy...what is really hard...is learning a new language. We are learning Signed Exact English. Every word that is spoken, has a sign. American Sign Language, which is more what I'm comfortable with, is one sign can mean a phrase or sentence. But S.E.E. is what they use in the public school down here, so when she heads to school next year, she will need to be learning S.E.E. like everyone else. We are taking baby steps, but they are slow and you need two hands to do it and who has 4 almost 5 kids and two hands to do any one thing. Apparently, the people who came up with this language, don't multitask:)

Aubrey has a sensorineural hearing loss. (from web) Sensorineural hearing loss results from inner ear or auditory nerve dysfunction. The sensory component may be from damage to the organ of Corti or an inability of the hair cells to stimulate the nerves of hearing. The neural component can be the result of severe damage to the organ of Corti that causes the nerves of hearing to degenerate or it can be an inability of the hearing nerves themselves to convey neurochemical information through the central auditory pathways. (did you get all that:) The reason for sensorineural hearing loss sometimes cannot be determined, it does not typically respond favorably to medical treatment, and it is typically described as an irreversible, permanent condition. Like conductive hearing loss, sensorineural hearing loss reduces the intensity of sound, but it might also introduce an element of distortion into what is heard resulting in sounds being unclear even when they are loud enough. Once any medically treatable conditions have been ruled out, the treatment for sensorineural hearing loss is amplification through hearing aids.

So she has hearing aids and she will always need them. It is a part of who she is now. We have a wonderful auditory impairment teacher coming now. She gave me a great site for hearing loss simulation and I wanted to share that tonight. You can go and hear what a normal person hears and then if you click on mild, Aubrey's hearing, then you will hear what she does when she doesn't have her aids in.

http://www.betterhearing.org/hearing_loss/hearing_loss_simulator/index.cfm

I can only imagine that she pulls out the hearing aids sometimes, because the world around her just suddenly got louder and that must be strange to her...even though it is better and she can learn so much more now. But we are taking baby steps and maybe at the end of the month they will put them at full strength and maybe they won't. If there is anything that I have learned about Down syndrome, it's that every child is different and they do things on there own time table. And some days...it just isn't gonna be fun...but we'll get through it.

Sneak Peak

2011-10-16T23:03:00.000-05:00

It's October 16th and I'm almost DONE with this years Halloween costumes (I'm usually working on them still on the 31st) In years past we have done group things like:
Peter Pan and the Tinkerbell Fairies

And the Incredibles

This year, we are doing our own thing. Alice and Kate and Ella are even doing some helping with their costumes this year. So here is a sneak peak of a few costumes we got going on:

Aubrey isn't feeling good this weekend and will be skipping school tomorrow for a trip to the doctor. I'm having fall flash backs and getting back into medical mode with her. We are hoping it is nothing....but you just never know with this girl. Her costume is almost done, but she was in no place to participate in a photo shoot and you wouldn't have to see what she's got going on.

Ella's is done, but she is busy and we are having to come up with a way to "attach" part of her costume that is really stumping me, so no photos there.

Woody and I are on track for our usual "finish up the costume ON Halloween", but at least we got our ideas and should be all set to go....maybe this week:)

Therapies

2011-10-15T22:29:00.000-05:00

I have learned over the last three years of ECI therapies, that LIFE is important. It is ok to take "vacations" from therapy and miss once in awhile...because sometimes learning and using new skills is best done in a new and different environment.

Learning doesn't just happen at home or in school.

Learning happens wherever you are.

New sounds and speech patterns are sometimes heard while she spends time with her sisters or friends....when she thinks no one is listening to here (or on to her knowledge of new skills:)

I have found that spending time with peers brings out the best in her. She is a girl to watch and calculate and then tackle. She can do what she puts her mind too and sometimes a little peer pressure and the fear of getting left behind or left out is enough to motivate her and get her moving and climbing.

And while everyone else sped off...she very carefully....

took her time....

and step by step...

made her way down....

in her own time frame...

What is it they say about the tortoise and the hare?

SLOW AND STEADY WINS THE RACE!

And what she lacks in speed, she more than makes up for in VICTORY DANCES! The girl is her own biggest supporter:)

She works HARD to achieve.

New environments are good for her....all the way around.

And sometimes, it is the break in our grinding routine, that gives her the MOST opportunities for improvements...and we gotta remember that sometimes. Appointments and therapies are all wonderful....but it is living life that is the most important.

(And while pushing is not something learned (or encouraged) in therapy....it certainly is a sign of strength for her to be able to push a big kid around! Sorry Noah!)

Homework....

2011-10-14T23:30:00.000-05:00

Note home from school today:

They will be studying community helpers for next two weeks. At end of study, they are to come dress up as the person they want to be when they grow up (police man, fireman, artist, ect) and talk about it in class.

Obviously Aubrey can't tell us what she wants to be when she grows up, nor "tell" her classmates. We'll come up with something though I'm sure and a little note to the teacher. No big deal.

But it got me thinking....sometimes we lay awake talking about what the girls will be someday. On a particularly crafty day, we wonder if they will be artists...and on days when they are so excited about science, we wonder if they will become rocket scientists or zoologists, or musicians, or business women or lawyers or doctors or teachers or ballerinas....the lists are long. And we laugh histarically to think about their futures and where they will end up someday.

She's three and if we are really being serious, who really knows what they want to be at that age....but I sometimes wonder more about her than the others. I'm very open minded. I don't really care what she does in this life as long as she works hard and honestly and does what she loves and enjoys. I want her to be proud of her work...I want this for ALL my girls. But I wonder what she will be able to do....where will she live...and who will she become.

I have high hopes and dreams for her. I hope that she will be able to go to college and get a job and move out and maybe even get married. It's the dream I have for all my girls (especially the move out part:). But with Aubrey, there is always a little bit of worry too....maybe there always will be a little extra worry because of that little extra chromosome...

Beautiful

2011-10-13T23:18:00.000-05:00

I'm sure that every mother thinks that their child is the most beautiful...I'm no different! Tonight I was flipping through folders of pictures looking for one that would inspire me to write....and about Down syndrome. I came up with a blank. Every picture was of her doing something normal and typical and nothing that said, "I have Down syndrome". They were just beautiful snipits of our everyday life.

Down syndrome is a third copy of the 21st chromosome. Such a tiny part, to add so much to her. Such a tiny part of our lives, yet still always there.

When she was first born, I would "look" for the Down syndrome...the almond eyes...they were the tell. And I would look for it in my blog babies. And it was always there....I could see it.

NOW....I actually find myself "looking" really hard to see the almond eyes. Cause when I look at this girl, all I see is love and beauty and happiness. She is my joy and her laughter can light up a room! And we count ourselves so blessed to be her family.

WW: Visit with Great Grandma

2011-10-12T22:47:00.000-05:00

My girls are lucky enough to have THREE GREAT GRANDMAS.

This was a visit to one of them from this summer.

Aubrey sporting her new "cheese" face!

Chores

2011-10-11T23:02:00.000-05:00

We believe that it is important to teach our children responsibility and team work. All of our children do chores....even Aubrey. She doesn't do them as consistantly as the other kids do...but I try to find moments each day for her to do something.

Chores that Aubrey can do:

1. Put silverware away from a clean dishwasher. (good sorting activity).

2. Put books and toys away.

3. Help put clothes into the washing machine and transfer to dryer.

4. Put away kid dishes. (we have plastic drawers that we keep in the pantry with the kid plates, bowls and cups)

5. Fill diaper basket with more diapers.

6. Help put laundry into dresser drawers.

7. "Fold" burp clothes or kitchen towels.

8. Vacuum with sweeper attachment. ( I know it isn't attached here, but she really can do it:)

The fact that she does them....and cheerfully....is what matters most. It does not matter that these skills are not perfect or that they take a bit longer to do. They will get there though with practice...just like all her other skills.

Anything is possible....

2011-10-10T22:31:00.000-05:00

I think one of the hardest parts about hearing that your child has Down syndrome is all the thoughts about what she WON"T be able to do. Driving, marriage, children....the list is long. But nothing is impossible....all those things are possible and even becoming HOMECOMING QUEEN. And I don't doubt that Aubrey will be able to do all these things and more if she puts her mind to it!

Future Homecoming Queen and King!

Mariah Slick, an Azle High School senior, who happens to have Ds, won homecoming queen last week. I thought you might enjoy seeing possibility tonight! (Click on her name to see the short article and video)

*Out of curiosity, I googled: TX homecoming queens with Down syndrome. I counted at least 6 this fall alone!

Anything is possible...for anyone.

Discrimination

2011-10-09T23:32:00.000-05:00

When you become the parent of a child who is "different", your mind goes places. You wonder if you child will be accepted? Will she have friends? Will she be discriminated against because she is small, slow, doesn't talk? Especially now that Aubrey is in school, I worry about these things. I worry about discrimination. And I have gone through it over and over in my head how I will handle it when it comes up.

This girl here....with the big blue eyes....she's my baby. There are certain RULES that come along with being the baby. One of those is that you must grow slow and let your momma cherish the "baby" as long as she can.

This girl....doesn't believe in that RULE (there are others she disregards too, but this is the big one). She is a mover. After all, she has 4 big sisters to keep up with. She is always on the go. During August, at 6 months old, she learned to sit up all by herself, pull up on anything and everything and was even brave enough to let go a few times. She is disregarding rules!

The girl will stand by anything....even a moving and slippery puzzle box, which means that she had to "walk" behind it too! She's only 8 months old! I can't have a walker coming up yet! Too soon! Still my BABY!

Is it bad that I don't scold Aubrey when she pushes her sister down, preventing her from climbing and walking. Or let Aubrey jump on her back and ride her like a horse?

I haven't encouraged my girl to be the best she can be, or to give her confidence. I have crushed her spirit and told her she is too little to do that....I have been discriminating against her, because she is Aubrey's sister and it took Aubrey so much longer to learn these skills and I have discriminated against her because she is the baby.

I have been so focused on one daughter, that I was actually hurting the other.

Today I praised my girl for standing alone for 8 seconds. Today I praised her for being "sooooo big". Today I encouraged her to cruise around the coffee table. Today I tried harder not to discriminate again her for any reason.

Sometimes as parents of special needs kiddos, we get tunnel vision. We are human. Today, I set myself right again.

Becoming a Sister

2011-10-08T22:25:00.000-05:00

Becoming a mother changes you. You become stronger and wiser. Becoming the mother of a child with Down syndrome changes you and you realize that you are capable of so much more than you ever thought was possible. Not only does your heart grow, but you have a different outlook on life as well. I am more patient and compassionate and I enjoy each stage as it slowly comes and goes:) I'm glad that I have Aubrey. It is one of the best blessings in my life.

Our plan was to be done having children, but the Lord saw fit to bless us again, and Emelia, had been the best blessing for Aubrey. When I think about all the things she would have missed out on by not being a big sister....it makes me sad.

They are buddies for sure and when she comes around the corner at school and sees Emmie there, she almost starts running and Emmie gets the first hug and kiss....not me!

Aubrey tries to be helpful (like feeding Emmie cereal:)....and teaching her how to do summer saults (or maybe she's just rubbing her face in the dirt!). There is definitely a wonderful sister bond between these two and I can't wait to see their friendship continue.

I think sometimes I'm so focused on what a blessing Aubrey has been to us, that I forget that each of the people in her life, are also a blessing to her.

Typical Texas Friday Night

2011-10-07T22:32:00.000-05:00

If you aren't from TX, and I didn't used to be, there are certain givens.

Texas + Fall + Friday =

FRIDAY NIGHT LIGHTS (aka. football)

To say it is BIG down here is an understatement.

We went to the game....me and the girls. We had our own, typical, Friday night here in TX.

And while we went to see Daddy play flag football and not high school football, we had a good time anyway. Nothing stops my girl. We do all kinds of things. We are a TYPICAL family, who does TYPICAL things...and if you live here....that includes FOOTBALL games in the fall.

Her hut stance!

Monkey See, Monkey Do....it's gonna take her far in this life. Like the article said yesterday....it is all perspective. WE don't see her disabilities or treat her with a disability, so SHE doesn't see it either. She doesn't believe that there is anything she can't do.

If they can throw a football to each other....then so can she. If they can roll down the hill giggling...then so can she! Sisters are such a blessing to her. Examples. People who constantly push her to be bigger and to do more....to strive for more.

We have high expectations for her, just like we do for all the other girls. There are very few times that we treat her different, and that's mostly a size or safety thing. Otherwise we treat her like we would any of our other girls who were 3 years old. And she has a lot of responsibility being a big sister too!

Yup....just a typical family on a typical Friday in Texas!

Perspective and the Power of Words

2011-10-06T20:37:00.000-05:00

A Story about My Two

Daughters

How to Live in the World of Possibility

By Candee Basford

My first daughter was diagnosed with Down syndrome soon after she was born. Her language is delayed. Her abstract thinking abilities impaired. She is easily distracted and sometimes refuses to follow or listen to directions. She has some autistic-like tendencies. She has a bilateral hearing loss.Hearing aides have been recommended but she refuses to wear them. She has an uncorrected vision of 20/200 and a corrected vision of 20/60 at a distance. She is highly farsighted with nystagmus. She can be extremely stubborn and sometimes makes inappropriate comments. She can perform some functional tasks but has trouble with basic tasks like counting money and making change. She can follow simple cooking instructions. She can make her bed.

My second daughter is a sophomore in college. She is majoring in science. She loves anatomy and physiology, biology and anything connected to science. She loves to read but because of a vision loss she needs to take frequent breaks. She has a hearing loss so it helps if she can see the speaker and keep background noise to a minimum. Recently, she has become very interested in sketching portraits. Because of this new interest she is taking a course in advanced drawing. She is popular – the life of the party. She loves to flirt – in fact, her senior class in high school voted her most flirtatious. She has many friends. She has the ability to make other people feel welcome and loved. She is persistent, loves having fun and has a great personality. She loves to dance, travel and write to and receive letters from friends. She dreams of starting her own rock band.

The story of my two daughters illustrates the power of our words and our perspectives. It illustrates the power of the scientific processes and the labels we continue to use to diagnose, predict and sort people.

How? Both stories are about the same person, my daughter.The stories “differ in the way they are constructed – in their purpose – in their consequences – and in the assumptions they shape.” (O’Brien & Mount)

The story about my "first daughter” was constructed from exact words and phrases found on my daughter's school and employment related documents, written in the language of professionals, educators, psychologists and job specialists. It tells what she can’t do, won’t do and why. In this story, she is in need of repair, and thus in need of lots of professionals to fix her. The purpose of this story, in part, is compliance with federal and state regulations. The first consequence is that we (and the rest of society) accept the story as true and begin to adopt the language and beliefs and practices. Once that happens, the sad consequence is segregation, a client’s life, a planned life surrounded by professionals. The assumption in the story about my first daughter is that she is needy, broken, difficult and – most important – that her life should be safe and predictable surrounded by the service system.

The story about my “second” daughter was constructed from love, experience and by paying attention to gifts. It is told from the perspective that my daughter has immeasurable capacity once she has a valued and connected life in her community. The story about my second daughter is shaped (and lived) from a capacity perspective. This story is told in “context” of a life connected to others, a life that unfolds in exciting and unexpected ways precisely because of the many relationships she has. The consequences of this story are community and risk taking and surprises. The consequence is citizenship. The assumption in the story about my second daughter is that she is person who has capacity, interests, gifts, and contributions especially when her life unfolds in the presence of and participation in community.

The story of my two daughters represents two different worlds– the world of measurement and the world of possibility. Often, as my daughter grew up, I felt the overwhelming gravity of the world of measurement, pulling her toward specialized services and segregation with the promise of safety, and simplicity, and repair. In the world of measurement you get to know others by measuring and comparing. But it is the world of possibility that I find most powerful and promising.

The story about my second daughter is the story of possibility. It is the NEW story that we must learn to tell. It is the story told (and lived) from a capacity perspective, from a community perspective. We can learn to tell this NEW story by first examining our own perceptions and advocacy efforts. We can learn to tell the NEW story by listening, seeing, asking, discovering and taking action in the direction of gifts and capacities. We can learn to LIVE the NEW story by supporting rich relationships and taking actions that lead to more inclusive opportunities in our schools and in our communities, for it is these rich inclusive and ordinary experiences that will yield the context necessary to live in the world of possibility.

Copywrite 2006, Candee Basford

*Candee Basford is an author, artist, facilitator and independent consultant. She is president of Ohio TASH and active in capacity building approaches. She holds a Masters degree in adult education. Learn more about her and her daughter Katie here.

**An article by John O’Brien and Beth Mount inspired this essay. It is titled “Telling New Stories, The Search for Capacity Among People with Severe Disabilities” .

***For more on how to live in possibility read “The Art of Possibility” by Zander and Zander.

http://www.candeebasford.com

Wordless Wednesday--Dallas Arboretum

2011-10-05T15:02:00.000-05:00

Who I Am

2011-10-04T22:40:00.000-05:00

I am Aubrey.
I am a Daughter.
I am a Sister.
I am a Granddaughter.
I am a Great Granddaughter.

I am a Girl.
I am Three.
I am Curious.
I am Adventurous.
I am Huggable.
I am a Friend.
I am a Laugher.
I am Lovable.
I am Cautious.
I am Happy.
I am 22lbs.
I am 34" tall.
I am a Preschooler.
I am spirited!
I am sometimes Naughty.
I am a Child Of God.
I am a student.
I am a Energetic.
I am Intelligent.
I am Joyful.
I am FAST!
I am Slow.
I am a Learner.
I am a Big Girl.
I am an Eater.
I am a Climber.
I am a Digger.
I am an Artist.
I am Creative.
I am a People Watcher.
I am Persistent.
I am Mischievous.

I am someone with Down syndrome.....just a very small part of me.

School at Three

2011-10-03T22:15:00.000-05:00

My girl goes to school. I'm still getting used to that phrase. But for her....it is her new norm and she loves it!

Parent Pancake Party at Pearson

None of my kids really went to school before they were 5. They just weren't ready for the structured schedule of get up and get going and what not and to be honest, I really enjoyed that time with them. It is why I am a stay at home mom. And while I don't know that Aubrey loves getting up early and rushing with breakfast and stuff, I KNOW she loves school.

Aubrey, well, because of her Down syndrome, she is on a different path than my other kiddos. She is going to preschool at just three years old. And that has made her "different".

Aubrey's turn to stir.

In so many ways, she is just like everyone else in her family and all her friends. She is three and she has temper tantrums and she does chores and she loves life. But here is where her Ds makes her different. Her differences aren't something we usually focus on or call out. And if she didn't need the extra help, she'd be sleeping in and spending her days with me. Her Down syndrome makes her different. It means she going to school now.

I still panic sometimes when I look in my rear view mirror and see an empty car seat. I panic in store when I get that feeling like I don't have enough kids to keep track of. Cause she isn't there with me all the time anymore....

Aubrey waiting with her classmates in line to have a turn at making pancakes.
Yup, she's the peanut of the class!

But in so many ways, school has provided a great relief to us too. From the time that she was born, or rather her heart was fixed, I have felt like every moment of every day has to be learning and pushing. We were the teachers and it was all on us to help her do the work and help get her there. Now, I can drop her off at school, know that she is getting a solid 4 hours of intense learning. I can enjoy our moments and afternoons a little more, because I can relax...the learning for the day is done or at least most of it and not every moment of our day needs to be about teaching her something....it can just simply be about love and laughter and enjoyment of life. I don't worry so much about whether I am doing enough now.

Making pancakes.

Our ECI team was well loved and we miss them dearly. But this school thing is a different sort of team and while I have had to give up the some of the control in her day to day learning, it is what is best for her. And I trust them with my girl and to tell me as much about her days and learning as they can.

Adding butter and syrup to our pancakes.

In so many ways, she is just like everyone else.

But in some ways she is different.....and that's ok!

Becoming a Donor

2011-10-02T21:27:00.000-05:00

One thing I have wanted to do more of is advocating. And so today's post is advocating for the National Marrow Donor Program. Many families with Ds and without rely on them to save lives.

In the beginning, when you first get your diagnosis of Down syndrome, you also get a LOT of information. Some comes from doctors that don't KNOW life with Ds kids. Some comes from google searches. The best comes from FRIENDS! Our "friends" live all across the country and they blog about everyday life with their children and we reap the benefits of ideas and questions and answers and so much from them.

Unfortunately we learn about the bad things too, like leukemia.

This past year, we have seen three of our friends battle and BEAT cancer! Ella Grace and Emily and Abigail. We actually got to meet Ella Grace and see how great she is doing this summer. A couple hours at the beach together and this was the best shot I had of the two girls:) More interested in exploring the beach than having a photo shoot.

While they have won the battle, there are some who are not winning the battle and need help from you to save them.

It’s been a documented fact for decades that children with Down syndrome have a 10-30% higher incidence of developing leukemia then typical children. The good news is that, although scary, it's pretty rare, even in children with Down syndrome. About 1 in 95 will get it (compare this to 1 in 2000 in typical children).

How high is the cure rate? There are different forms of this cancer. The two types that children get are ALL (acute lymphoblastic) and AML (acute myeloid). ALL survival rate is about 90% for kids under 5. AML survival rate is about 55% for kids under 15, EXCEPT for children with Down syndrome--their survival rate with AML is 85%.

For children with Down syndrome, leukemia treatment is more successful than for other kids. It's likely due to a genetic mutation found only in Down syndrome children, new research shows. However, the same mutation also increases the kids' leukemia risk.
(information taken from this website: http://www.down-syndrome-facts-and-fiction.com/leukemia.html)

So how can you help? Make an easy life changing decision! Join the National Marrow Donor Program!
Successful bone marrow transplants are often the only way to fight this disease. Joining is free and easy and you could be saving someone's life someday...you could be the match for one of our friends...and hopefully NOT, but you could be our match someday...

You will simply fill out the forms online, they mail you a kit, you swab your cheek and send it in. It is that simple. If you are pregnant, you can also store blood cord for future use in your own family, or even DONATE your babies blood cord to help save someone else. Be someone's hope...the answer to their prayers.

Do it for our friends. Do it for Aubrey and all those other littles out there, with and without Down syndrome who are waiting on a match.

Click on Aubrey's button (on the right side bar) to take you to the National Marrow Donor Program site to join.

Be SOMEONE's match.

Have you heard?

2011-10-01T20:39:00.000-05:00

Have you heard?

It is that time of year again. October is National Down Syndrome Awareness Month. I have once again committed to blogging every day in October (31 days) to help raise awareness and support for individuals (and Aubrey) who happen to have an extra 21st chromosome.

ALL children are blessings, but I think that sometimes, we need someone with a little something extra to help us see what TRUE beauty is and to take a step back and be thankful for all the little things in life that we so often take for granted. It is our hope that by sharing Aubrey's story, our friends and the world will see people who have challenges and disabilities in a new light...an accepting light...in a beautiful light. Join us this month in CELEBRATION of life...especially those with a little something extra.

Down to ONE box of diapers

2011-09-26T20:22:00.000-05:00

Yup....you read that right. We are only buying one box of diapers at our house these days.

There has been a lot of this.....

I love how she crosses her feet (that don't touch the floor) and HAS to have a book to read while sitting! Sometimes we sing or paint nails, but she likes her a good book.

And she has shown great support to friends who are also trying to use the potty....

Notice that she is reading Thomas to him. That was his choice....not hers....we do princesses, not trains at our house:) We don't have many "boy" books at our house:)

And while we aren't really even close to the day that I will let her out of the house in just undies, her little sister is gaining on her and is big enough to share the SAME SIZE diapers. I could have squeezed her into the size 2's for one more package, but to be honest, I would have been doing more leakage laundry and it just wasn't worth it.

Two different girls....

Two different physiques.........

Both wearing the size 3s!

I'm so used to my chicken leg girl and with this one.....I actually have to peel the rolls to get clean in between!

But I'll tell you what....it's gotta be ALL muscle cause the girl is on the move ALL the time! She'll be 8 months at the end of the week and she is crawling everywhere, pulling up on everything and has started to let go and stand alone as well as cruise on the furniture and got up one step of the stairs today!

Yes this one keeps us busy!

Wordless Wednesday--Preschool

2011-09-21T13:04:00.000-05:00

Flag helper for the week

Learning about the sense of TOUCH

School....Take Two

2011-09-15T13:44:00.000-05:00

I was wondering how today would go....talked it up all night....prepared for the worst.....

Got Aubrey out of her crib....told her we were going to eat and get ready for SCHOOL and to see her TEACHER and FRIENDS.

Got her dressed so we could go to SCHOOL and to see her TEACHER and FRIENDS.

Ate breakfast so we could go to SCHOOL and to see her TEACHER and FRIENDS.

I said, "It's time to go to SCHOOL and to see her TEACHER and FRIENDS. Let's get your backpack and go out to the car."

She promptly walked to her hook, grabbed her backpack and lunch box and signed "school"!

One of her IEP goals (for the YEAR) states that she will carry her own backpack and lunchbox and follow school routines (walk in by self, carry all items and put them away in her locker).... CHECK!

That icepack in her bag was SOOOOO heavy...and while it wasn't far to the car....she got it all the way there.

Another IEP goal is to remove shoes and clothing. Because being late on the second day (by two minutes) wasn't enough....Aubrey removed her shoes, orthotics and socks in the car on the way! Second day of school....second CHECK!

After returning shoes to her feet and putting her backpack on and handing her her lunch box, we walked into school. After a quick hug and kiss she willingly went with the Principle down to her classroom...DIDN'T EVEN LOOK BACK AT ME!!!! Sad and proud all at once. Yup, today was a good day and I had high hopes. No worries here, just spend the morning wondering what she was up to.

Even though the school day for her class runs until 2:15, we have opted to only send her 1/2 days. I pick her up after lunch and we come home for nap. I got there a tad early (timing my different routes, so we aren't late tomorrow) so I had to wait. Across from the front office is the library. The kids have story time here and also can check out books to their classroom.

This is only half the library! Reading is a big deal and I'm so glad they take it serious here....

And then I heard the secretary coming down the hall with my girl and as they turned the corner, I didn't see a crying girl....

I saw a VERY excited girl. She was full of hugs and kisses for me and Emelia and couldn't stop smiling. I'm pretty sure she had a good day! And that makes this mama happy.

Maybe we are ready for the carpool line.....if we can get there on time:)

Aubrey at School

2011-09-14T18:41:00.000-05:00

Her teacher just emailed me some pictures from this morning! That totally rocks! Love her school already!

Snack Time

Center Time - Housekeeping (no surprise there:)

First Day of School!

2011-09-14T13:53:00.000-05:00

Aubrey's first day of school....should have been Monday....but a post birthday stomach bug delayed it a bit:) I'll spare you the pictures of all that, but will tell you that:
*we were up every 30 minutes all night long
*I had THREE extra loads of laundry to do the next day
*there was fever
*I got to cuddle my girl a lot
*She took two 4 hour naps

*She's back to her old self again.

Big girls who go to school, need to be able to reach their school stuff. So a couple weeks ago, we put up some hooks for her coat and backpack that are low enough for her to be able to hang them up and get them herself (she is yet to put her stuff away:) Her shoe basket is also by the door. She is really good about putting those away and getting them when it is time to go.

So last night.....we got her backpack all set.

Preschool requirement: One back pack big enough to hold a 9x12 folder. Those tend to be as big as Aubrey and hit her in the knees when worn, so I made her her own back pack (last night), that fits a folder sideways.

PERFECT FIT!

(truth be told, she took it right off, but it fit and I'm confident that the teacher will teach her how to wear it....I'm gonna let Miss Senne fight that battle:)

We had to get up EARLY.....school starts at 8:15....so we gotta leave about 7:45...and we gotta get up before that.
Gone are the days:
*of sleeping in til 8:30 or 9:00
*Eating on the go
*Staying in our jammies ALL day (or at least until carpool for the other girls)

To say she was excited about this new schedule would be exagerating just a bit! She was NOT pleased!

She thought about running back to bed and delaying the start another couple ~~years~~ days!

Thumbs make everything better.

But after some coaxing....she agreed to try it....ONCE!

Her preschool has about 500 kids total in all the different programs (am & pm preschool as well as the deaf ed--I'll explain her program later). She does NOT ride the bus! Again another post....I get to drive her and there is a carpool line. You pull up, they pull your kids out, you pull away. (I'm not ready for the carpool line either:)

I parked and we walked in together (highly discouraged). There were a lot of kids and she was not letting go of my hand. We met her teacher in the hall and put her bag away in her locker. We chatted with Miss Senne a bit and went into the classroom. She had an activity set up for the kids to work on. Camera in hand, I was ready to capture that first activity of preschool, but Aubrey was not having it and wouldn't even sit down. She clung to my leg! The teacher had to take her so I could slip out the door:(

I waited in the hall a minute before peaking in.....she was fine. But I worried about my girl all morning. And I even arrived back at school earlier than necessary. She had an appointment at 11, so she really only went for a couple hours today. The teacher said she participated....she was a little upset when the diapers came out and she remembered home....and she cried when the teacher said that it was time to go down to the office and see mama. Maybe she didn't understand that I was there, but it tears at the heart to see your girl walking down the hall crying.

Photo by Ella Smith (age 4) taken Friday at meet the teacher

First day.....done. Tomorrow....gonna be tough, but better we hope. Maybe I'll just walk her to the doors tomorrow. Maybe next week we'll join the carpool line.....maybe....

School

2011-09-06T13:56:00.000-05:00

So the three big girls are now in school (Ella most days) , so I'm finding time for catching up!

I feel like the first week was a little crazy, since Ella had surgery, and last week she was still recovering and now this long weekend.....I feel like we are getting into the swing this week now....and then Aubrey will start!

Alice is in 4th grade now....I remember when I used to sub, thinking that 4th graders were so BIG. And now...I feel the same:)

But in a lot of ways, they are stuck in the middle. Not the little kids anymore, but not yet considered big kids. It's a good place though and I think it fits her. In a home where she is ALWAYS the big kid, I think it is nice to have a place where she isn't. And while she still has fun pretending and such with her sisters, she is also spreading her wings a bit and reading higher level books and singing in the choir and caring about hair and clothes. (we will have many YEARS of butting heads ahead....I can already see).

Kate is in 2nd grade and with a room full of boys....she holds her own pretty well. She is my most energetic and hangs with the boys just fine. She's becoming a leader and is reading beyond her years! I can't keep enough books in the house for her:)

She loves to just get to school and get to work. Let's do this! It may be due to the fact that they have great teachers and friends, but I do hope that she always loves learning like this....with enthusiasm!

Ella went to preschool this year and is learning the ropes at the "big school". And while getting up early is NOT her thing, she is settling in nicely and LOVES to be with her friends. We are excited to see how the year progresses, since she had surgery and is just starting to become a new and improved Ella. But this weekend she was writing words for me....so I know she's learning lots already.

Thank you to everyone who has prayed for her. Those first four days at home were pretty rough, but then she made a turn and hasn't looked back. We are so thankful to have found the problem and to have been able to have it repaired. We continue to pray that she remains healthy now.

Breakfast of Champions on the First Day of School....Thurne's Sausage, Carrots and Hummus! Love this girl and her constant ways to make me laugh:)

Aubrey had a meet the teacher and it was good. (This is her carpet spot.) They are ready and waiting for her. I think she's gonna do great, but it will be an adjustment too. Her ARD (admissions, review, dismissal) meeting is tomorrow morning. We have some of her ECI people coming to help us make that transition to school as we write her new goals for school. Sad and exciting time all at once....

We are excited and nervous about starting school, but I know that Miss Senne is going to take the best care of our girl here. (yup....she's got a locker and it's the real deal--she can't open it, but they'll be working on it).

And Miss Emelia.....in August she learned to sit up by herself, crawl, pull to stand, and keep us on our toes!

She is a busy one and moving faster than I would like. So from time to time I might push her down to keep her from walking too soon! She's my little and I can't have her growing too fast!

More to come on Aubrey's school and meetings! Have a great Tuesday!

Update on Ella

2011-08-24T21:44:00.000-05:00

I want to first THANK everyone who prayed for my sweet girl today. She was so brave and tough and is doing well tonight. Daddy is sleeping over tonight.

Some asked what was going on....so here goes. I sometimes wonder about sharing too much, too soon since it was a LONG process that got us here and it was hard to keep up with myself. While I don't ever want anyone to go through this, maybe some other parents out there are pulling there hair out and need someone to point them in the right direction for help. We are finally getting ours....I hope!

We have been potty training Ella for 2.5 years (she will be 5 next month). She was still having frequent accidents and so this spring we took a step and her doctor started digging for answers. Tests revealed that she had reflux on both sides. Urine normally goes from kidneys to the bladder. Reflux is when urine from the bladder flows back up into the kidneys, often causing urinary tract infections, with high fever (she does 105 type fevers all the time). Repeated infections can cause scarring and damage to the kidneys.

While she has some scarring of the kidneys, the over all function is fine and nothing to worry about.

Further testing also revealed that she had double ureters (tubes connecting kidneys to bladder) on BOTH sides.

Only way to fix it all was surgery....so this morning we got up at 4:30am and heading down to the hospital with sister Emmie in tow!

watching cartoons

We registered and got a good work up and then headed down to the Holding Room. I didn't know that Emmie couldn't sit with us back there, or I would have had Woody bring her later, so the Child Life Specialist, sat with baby while I sat with Ella. (Woody took kids to school on his way in.)

They gave her "goofy juice", to keep her calm and relaxed for the hand off. And in light of this, I had to take pictures of the light fixtures in the holding room, because no one was gonna believe her when she told them about the FLYING DOG when she woke up! It was the last thing she saw before surgery....and the first thing she asked about after!!! "Hey....where'd my flying dog go!!!!"

Light above her bed:) Cool huh!

They let her watch a movie while she waited. That combined with the juice....she barely said goodbye to me when I had to leave her....which was sad and good all at once.

Beauty and the Beast

I explained the whole procedure to her. I thought that only fair....it is her body and she will have to recover. Her one and only question this morning.....When can I have a popsicle?:)

What should have lasted TWO hours....took FOUR and a HALF. To say we were getting worried was an understatement! Apparently she also had a weak bladder wall that they had to repair! Nothing is every routine or easy for my girls at this hospital.

Good news: She is ALL GOOD. Everything is repaired and she should be fine. She has a three inch incision that is going to need some healing, but we look forward to much happier days to come now!

She has been sleeping most of the day and been pretty groggy. Tonight she got some visitors to her room.

Hopefully she "behaves" tonight and is a model patient so she can come home in the afternoon. Pray for a smooth night.

Prayers for our Ella

2011-08-23T22:31:00.000-05:00

I know that I have tons of updating to do, but I humbly come to you for prayers for our dear Ella.

Ella's First Day of Preschool

Tomorrow she will be having surgery...nothing too big, but surgery none the less and she is very nervous...which in turn has made a calm momma now nervous. Please pray that out nerves are calmed and that all goes well with the surgery. Woody and I will be with her all day tomorrow and he will stay over night with her as well. If everything goes ok....she will come home with us on Thursday.

(and I promise to work on pictures and posts while I sit in the waiting room:)

Advocating for my kiddo

2011-07-25T14:17:00.000-05:00

When you become a mom (or parent for that matter), your kids become your number one priority and fighting for their health and well being tops the charts....and being respected.

We have been fortunate over the last three years to be surrounded by love and support, by friends and family, but also by neighbors and strangers.... and my chances to defend and lift up my daughter because of her Down syndrome have been rare, if at all. So I've done very little advocating.....

However, I feel like it is important on a NATIONAL level to advocate for people with Down syndrome, because some day, my daughter will benefit from the stance that we take today to make HER world a better place. It is something I hope to become more involved in this year....starting TODAY.

On July 15th, GQ magazine published a list of Worst Dressed American Cities, written by John B. Thompson. Boston ranked first and the author described them this way: "Due to so much local in-breeding, Boston suffers from a kind of Style Down Syndrome, where a little extra ends up ruining everything". GQ has since removed that phrase from their piece.

On July 18th, Brian Skotko, a physician at Children's Hospital Boston's Down Syndrome Program, wrote an article entitled "Mock My Pants, Not My Sister", in response to the GQ article.

He says in the article, "Go ahead, GQ, and mock my blue whale-emblemed Nantucket-red pants. Laugh if you want at the loud argyles that I prefer to wear with my black suit. I don’t even care if you dismiss the sexy pink polka-dotted tie that I like to wear with my blue-checkered shirt in clinic. But, whatever you do, do not mess with my sister."

We're with you Brian! Nothing is ruined by having something a little extra.....life has only been better because of that extra chromosome in our house. We have extra love and extra laughter and extra patience and extra friends and extra understanding and so much more.

Patti, Lily's mom and one of our blogging friends, took on the challenge as well with a video Montage. You can read her post and watch the video montage at the bottom, HERE. Aubrey and her extra something are at minute 1:56.

So to John B. Thompson and all the others at GQ who didn't have the sense to edit the article before it went into print for everyone to see, we have just one thing to say:

"Go ahead and make fun of my GIANT, red, size 17, crocs. But don't you dare make fun of my daughter." ~ Woody Smith

Friday Night

2011-07-08T23:16:00.000-05:00

All of my littles are tucked in bed....the dishes and laundry are done....and my "to do list" is quite a bit shorter after this week....so I"m finding time to share our Friday with you.

My girl painted today! It was a first for her. If you know me well, you know I don't like mess. My kids don't have finger paints...too messy! You know that kind of thing...I just hate the mess. But I'm learning to let go a little and my girl has proven to be very neat.

She took such pride in remembering to dip it in the water and then into the paint. She created a masterpiece. It was a good day....a good reminder that she really is so smart and that given opportunity to do things and shine....she will. (and just look at that correct hold she has going on too!)

Summer Friday Nights means a trip to the pool. When it hits 105...we are always there.

This year...she's walking and so the world is her oyster and she is becoming so independent. She is curious, and cautious. She is brave and shy. She is blossoming into a really beautiful young lady.

Our little girl will be three in exactly two months...and we have to remind ourselves of it often. She is still so small in size, but she really is a big girl and capable of so many things.

We are trying to figure out the correct wording for her IEP (individualized education plan) in school next year...How to politely say stubborn and strong willed!

She is a strong, silent type...and quite the little lady.

She's my baby and I'm trying to soak her in these days.

Because my days won't be so full of her anymore....she will be at school...and I will miss her...

And while we want to help her grow and learn and blossom....

We also want to hold on tightly to this little peanut.

Pretty soon, Aubrey will be hanging with the big girls and keeping up with them.

I'm enjoying where she's at, but also wondering just a bit about her future and wondering what will she be working on next summer....

Will her sisters have her standing on the edge of the pool with them?

How brave is she gonna be at the pool?

Will she still be cautious....or will she jump in with them?

For now...she's happy to hang with me and watch her crazy sisters and keep to the shallow end. I'm enjoying it!

You'll notice that three people were missing tonight...someone made bad choices today....no names, but they might be 4 years old and stubborn.....and when you make bad choices, you don't get to stay up after dinner to swim. You stay home and get put to bed....and one parent will have to stay home and as long as someone HAS to stay home...well, the baby might as well too. And that is why I got to document the night:) Two free hands and only one little to worry about.

Happy Weekend Everyone!

New Look

2011-06-13T12:31:00.000-05:00

I must admit that I usually cut hair....don't like paying $20 for a five minute haircut. But I also like straight lines! So I finally bit the bullet and paid to have Aubrey's hair cut by a professional. She just wouldn't sit very still for me to try and do it myself.

The end result, a very cute bob:

Shorter and so much easier to take care of. She seems pretty indifferent, but I gotta say....I miss the piggies already:(

We are also sporting some new accessories! She is totally Rocking her RED SPECS! Keeps them on and everything!

It became apparent when she was in a class of others and being read to, she wasn't seeing the books, so we went to get her prescription. We think she looks great and they seem to make a difference, but we've only had them three days, so we'll keep you posted.

{Sigh....} Baseball Games

2011-05-18T14:40:00.000-05:00

I realize that I am WAY behind on updates....and I just have decided that instead of trying to back track we will just move forward and I will fill in the gaps where I can.

(Note to anyone out there: If you are trying to keep up with everything in your life and you have 5 children, I highly recommend NOT taking 695 pictures on your Disney vacation that you must then sort through in order to post and share and NOT signing up to sew 210 luggage tags and 30 crayon rolls for a wedding--though you know I'm loving it Becky--just not keeping up with laundry or dishes or the blog:)

So this weekend, with my new resolution to NOT take too many pictures (I only took 7), we headed out to a local baseball game. The Frisco Rough Riders feeds into the Texas Rangers team. We went with a church group and had a great time. It was a ticket to the game (7th row near first base) and an all you can eat buffet as well!!! The girls were in heaven since usually we just get one treat for everyone at the game and they were able to go up as many times as they wanted!

Aubrey had a lot of fun concidering she didn't have a nap....but I'm not sure she was really interested in the actual game!

Emelia slept through half of it and then got passed around the crowd.

Ella was excited to have her "soda pop" and wanted a picture of herself with it.

Alice's disappointment that we were going to SHARE only ONE bag of cotton candy between ALL the girls!

Kate enjoying the Icy Lemonade that we also only got one of and they had to share!

Tough life these kids have....I know!

Wordless Wednesday--Disney Vacation

2011-05-04T22:04:00.000-05:00

(more to come from Disney:)

Happy Easter

2011-04-24T22:26:00.000-05:00

What we've been up too....

2011-04-22T14:54:00.000-05:00

I am long over due for some updates, but there is so much going on here, that I'm just trying to keep up sometimes...but I promise to try and get some coming soon. Until then, and because I keep getting bugged by the family, her are at least some pictures of what we're up too.

The weather has been beautiful here and we've been spending as much time as we can outside. The girls love playing on the porch and watching the neighborhood goings on! Future neighborhood gossip girls!

My kids don't lack imagination and pretend play! They set this all up and asked me to take a "family picture"! They are so funny. It's actually a pretty good shot off all the girls.

Daddy celebrated a birthday. Aubrey and Ella learned "Happy Birthday" in sign language. I have it on video, but can't get it to upload right now.

I figured out how to get Aubrey and Emelia to nap at least a little while at the same time each afternoon (and in the same room to boot!) and so Ella and I have been doing some baking and crafting.

This day we were making blueberry pie.

Aubrey has decided that "bedtime" should really be considered a second naptime, that is also followed by snacktime! She goes down about 7 and gets back up between 8 and 9...and then thinks she needs a snack...Dad gives in and then tucks her back in. Ella thought this sounded pretty sweet and wanted in on the deal too! We are working on BREAKING this habit and have found some success this week.

Emelia is growing by leaps and bounds and at 3 months, 10 lbs and 10oz, she is officially more than half of her older sisters weight. I'm guessing she will pass Aubrey by sooner than we thought.

She's cooing and trying to say quite a bit. Sleeping better too....though 3pm - 11pm is not the 8 hour stretch that I am looking for! But last night she did sleep 10pm - 7:30am! No real patterns and sometimes she's up all night...so we plug along:)

Ella's perch from the upstairs balcony...want to know what she was watching...

The painter! He was here two days last week painting the high walls for us in the living room and kitchen eat in area. It's a really pretty sage green.

And yesterday...my baby girl got her first set of FRENCH BRAIDS!!!

Her hair is so thin and was getting long, so I've been meaning to cut it, but after this, I might reconcider.

Not my best or straightest work...but she was so still for the first one...and they stayed in all day...she even figured out how to flip the ends so that she could twirl them while sucking her thumb!

Have a great Friday everyone!

Wordless Wednesday--Sister Loving

2011-04-06T22:32:00.000-05:00

Fashion vs. Function

2011-04-03T20:30:00.000-05:00

Sometimes (or maybe a lot this summer)...fashionable footwear will take precedence over the functional shoes that must be worn with socks and orthotics.

Yup...you'll be seein' a lot of these frogs this summer...cause that's what everyone else will be wearing around here, so why not Aubrey.

I thought she would dislike the part between her toes (like all kids do at first), but she didn't mind one bit and actually took to them like she'd been wearing them all year. And yes with 85 degree weather this weekend, it was plenty warm to be wearing sun dresses and flip flops! We love Texas in April...but come August...you'll only find us in the pool!

Wordless Wednesday -- Circus, Circus (grade school play)

2011-03-23T14:58:00.000-05:00

Living life each day...

2011-03-22T23:53:00.001-05:00

Yesterday was 3/21...March 31st...World Down Syndrome Awareness Day. It is celebrated on 3/21 each year...3 represents the third copy of the 21st chromosome. It's a day designed to raise general awareness about Down syndrome and to celebrate the individuals who carry the extra chromosome.

So why am I posting today you ask? Well, because life got in the way yesterday. Because yesterday, like most days, Down syndrome is not at the forefront. It is almost always in the backseat actually. And while I am always interesting in talking with people and sharing information and advocating for individuals with Down syndrome and sharing our story of Aubrey...I'm so much more interested in just living our lives.

But I also wanted to recognize the fact that 1/47th of Miss Aubrey is unique and special and something that we celebrate. So here is to all those out there will designer genes!

I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. Psalm 139:14

"If you're lucky enough to be different, don't ever change."

-Taylor Swift-

"Our children arrived exactly as they were designed. There was no mistake here. They are a direct and unmistakable gift from God."--Courtney Heigele

"Down syndrome is a sometimes-frightening but mostly beautiful part of my life just as being female is or being a photographer is or getting older, being a wife, raising kids is. Life isn't always easy. Some things you choose, some things you don’t, but together it stirs together, and you drink it. And if it doesn’t taste quite right, you set to work in your kitchen adding, subtracting, perfecting that recipe until it’s the best damn drink you’ve ever tasted. The perfect cocktail. And Dude, I know how to make a good martini."--Kelle Hampton

(Her favorite place to hang out these days - between the wall and the tv dresser stand)

Yes it really is warm enough for sun dresses this week!

chalking with Ella

So if you have spent any time with me on the phone or at our house in the last year, you have heard me say (at least a hundred times) "Aubrey is NOT a doll!" followed by "Stop carrying her, dressing her up, putting her in there, all of the above or whatever applies".

The girls thought it was time for Aubrey to take up a sport...they picked Tang So Do.

And they set to work with her training....

And she LIKED it! So if you stop by and see her in this outfit, you'll know she's just catching up on her training sessions...not being tortured...THIS time!

And Emelia is finally settling in...and sleeping. She likes something on her face to fall asleep or to snuggle herself into the crook of your arm.

And she is spending more time just looking up at us with these amazing blue eyes!

But when she's crying...Big Sister Aubrey (who isn't every really far away from her) comes running to the rescue! Aubrey tries covering her up, rocking the car seat, wiggling the bell toys, until Emmie nods off again. Aubrey has such a big heart and so much love for this little sister of hers. I have to remind Aubrey not to squeeze so tight when she's loving on her little sister.

And can you believe that I was brave enough to take the three littles here?

It was a reward to Ella and they both loved it...thankfully Emmie slept. Note there is no pictures of the kids actually in the water playing since that required all of me and there was no way to take pictures and hold baby and keep everyone alive! Maybe next time:)

But I did snap this one of Aubrey and Dad at a birthday party this weekend. She is loving the pools and I can see I'm going to be busy at the pool this year!

Full Hands...Full Hearts

2011-03-06T09:34:00.000-06:00

In case my LACK of posting doesn't say it already....this picture certainly does!

I have my hands full most days! But my heart is full too! I love these guys and I know the days of holding and cuddling are numbered...and I'm trying to cherish that and not complain!

Emelia likes to be held...or she cries...and yes I did try and let her just cry one day and she cried for TWO hours...Not worth it.

We are working on it....but it is a slow process. She gets a lot of bubbles when she eats and so if you don't get all the bubbles out...she doesn't sleep. She's getting better, but she's a tough cookie to figure out.

And Aubrey....

Well, in so many ways she is still a baby too and she likes to be cuddled and held and carried. And between the two of them, I got my hands full and that doesn't allow for typing on the blog:)

Aubrey LOVES Emelia and shares kisses all day and wants to hold her a lot...and was kind enough to share her germs too...yup, Emmie has a little snotty nose this morning:(

I have lots of pictures and updates, but I'll leave you with Valentines day for now (since I hear Emelia crying right now)

(Emelia pooped on her outfit before her photo op---so no valentine picture--sorry)

Our Week

2011-02-13T19:25:00.000-06:00

Our burrito is making life busy and now that our help is gone...I'm sure it will be even busier.

This is a rare shot of her actually sleeping in her crib...she much prefers to be held while she sleeps...a cuddler:) However...it makes nights hard and we are both running on fumes these days.

Ella is always making sure that Emelia has something close at hand to play with...dolls and transformers!

We should have known that this one would be a challenge for us...since she does this all the time!

Aubrey is never far from Emelia and is constantly looking for her and wanting to hold her and hug her and kiss her! I'm so glad for her instant love of Emelia. She is always right there to help...and personal bubble and space is NOT part of her vocabulary:)

That being said...she is a little more needy these days too and today got some much needed extra snuggle time. I'm trying to find every chance I can to snuggle. Lucky for me, she is willing to share my arms with Emelia at the same time.

The LOVE is overflowing at our house right now...and I love it...and I love that the sisterhood has expanded by one!

Emelia was baptized in the hospital the day after she was born...just like all her sisters. We do it, because you just never know what might happen and we want to be sure that our babies are children of God right away. It gives us peace of mind.

This morning in church, we had her affirmation of baptism in front of our church family. We remembered her baptism and shared it gave us a chance to introduce her to her church family too. We are so glad that my mom was still here to share in the day as well.

Can I tell you about the dress? I had the first grandchild on both sides...so my mom made two baptismal outfits...one for a boy and one for a girl. Each of my girls has worn this beautiful dress (as well as my two nieces) and in the hem of the dress are the initials of each grand-daughter and her baptismal date. It is such a special family tradition and I can't wait for my own grandchildren to get to wear the outfits as well. The blanket was made for Emelia by a lady that works with Woody. It was a very special day.

And guess who likes birthday cake and frosting!

We had a little birthday celebration this weekend for me (birthday is Tuesday). And Aubrey discovered a deep love for frosting and cake.

And finally...Aubrey's new look...

Yup...anytime she sees the camera...we get this face. It's her "CHEESE" face. We are hard pressed to get a nice picture of her these days, where she isn't doing this face! She is such a funny bug and we love her so much!

Happy Sunday everyone...have a LOVELY week!

Update on the Family

2011-02-10T13:25:00.000-06:00

So I thought that it was time to finally get back to the blog with an update on how we are doing...
as a family of 7!

We are all enjoying the time with our new precious girl.

And while a boy might have been wonderful in it's own way...our family was meant for one more girl and Emelia is just the perfect fit:) Ella was a little disappointed at first, but once she met her newest little sister, she declared, "I want to keep her!"

I think they are all equally in love with her and they fight over holding her.

(Alice and Kate had colds...thus the masks:)

Aubrey is always looking for "baby". It is the first thing she signs in the morning and she keeps pretty good tabs on where Emelia is all day and there is no such thing as too close...Aubrey likes to be right there with her all the time:)

And then we got to back her up and bring her home...in the middle of a TX ice storm! Worst weather we've seen in the last 15 years! The big girls missed 4 days last week and 1 already this week!

So now we are home, getting used to being 7 and having one more mouth to feed and one more person to keep up with:)

We are thankful to Brenna for leaving her 4 kids at home in MN to come take care of our 4 kids while Emelia was born.

And we are thankful to have had the grandmas here to play and help out now that we are home.

Welcome to the World

2011-01-28T12:33:00.000-06:00

This morning, we got up early to come to the hospital....

And Aubrey became a big sister!

Emelia Ann Smith (named after Woody's grandmothers, Emily and Ann)

6lbs. 13oz.

19 inches long

born at 8:10am

She has some blond hair and dark blue eyes.

She is beautiful!

She was having a little trouble keeping her stats up, so she is in the NICU for just a little while and hopefully she will be back in our arms soon. Thank you for all of your prayers. Please continue to pray for her health.

BIG DAY AT OUR HOUSE:)

2011-01-25T08:18:00.000-06:00

Yesterday....was a BIG day at our house!

And NO that doesn't mean that baby came early...it just means that Aubrey had an exciting day!

I have been waiting to do this post FOREVER.

A little background: Let me start with this cutie! This is Koen...he is 6 weeks older than Aubrey.

I know that sometimes when you see Aubrey on this website....it is hard to get a feel for how big she is and if you just see her by herself...well, you just kind of don't know either...so I wanted to get a picture of her with someone that was her age...Her and her friend.

Not the best pictures...but it gives you an idea of her size compaired to someone her age. Koen weighs almost twice as much and is considerably taller...and is only in the 50% on the regular chart!

My ballerina is petite as you can see! But she is happy and healthy.

Our nutritionist comes every other week to keep an eye on her growth. We gave up on charts a long time ago...I don't even know if she is on the Ds chart! About a year ago...we decided to keep track of her growth and proportion. As long as she is growing and proportional...then we let it go.

After all...this is not the bod of a girl that is wasting away! The girl eats and she has the belly and cheeks to prove it! And she is holding her own...and staying proportional....

BUT, this weight thing...is holding her back...literally backwards.

Yup...for the last 2+ years...she has been in the infant carseat...BACKWARDS! And yes, I could have moved her to a convertable carseat a long time ago, but she still had not met the 20lb requirement to turn her around. And to be honest...I have been a little lazy. It has been nice to just tote her into the house when she falls asleep in the car...and she keeps napping.

(2 weeks ago we weighed her with all her clothes on, just to see, and she was over 20lbs--so Suzanne said that if we don't take her anywhere NAKED, we could turn her around:)

BUT YESTERDAY...at her weigh in...she hit 20lbs EXACT! So we could legitamitely TURN HER AROUND!!!!

She wasn't sure what to think about it at first...and I wish I could take pictures while I am driving, because she is LOVING it. She can actually see out the windows and she "talks" the whole car ride now! I knew that life would be so much better and different for her, but I am actually amazed at how much she is loving it.

She's a big girl now!

(Nothing like waiting until 4 days before new baby comes and we need the carseat for him/her! Thanks for finally giving it up, Aubrey:)

Just a day of Games

2011-01-18T22:57:00.000-06:00

We've been busy around here with appointments and laundry and getting ready for new baby:) Just 10 more days! We're almost there...and have some relaxing days ahead.

Ella and Aubrey have really become good play friends and look for each other when they aren't around. I love when they sit and play without help. The other day, they spent almost two hours in the morning playing games together. Ella organized everything and I "helped" Aubrey play by the rules...I DID NOT PLAY though because they were just playing the two of them...no mommy! (but Aubrey needed a little help with the game rules--according to Ella:)

They played a cookie matching shape game--like memory, but matching the shapes and then the cookies fit together.

Then they played a fishing/abc game. Aubrey got pretty good at using her magnetic fishing rod to pick up the fish! I was totally impressed with her skills. She also liked to swing it around...which is NOT following the rules!

And then they read to each other:) I love that Ella made them take turns and that she sat and listened while Aubrey "read" to her!

Ella shows amazing patience with Aubrey and their love and sisterly bond is so special. When I was pregnant with Aubrey, and everyone else was having boys, I wanted one too...looking back...I'm so glad that we got another girl! I don't think their relationship would be the same...and I am really enjoying the way they are blossoming as sisters and friends:)

I love these ordinary days, when there are no appointments, or errands, or therapies....just sisters!

Snowy Days in Dallas

2011-01-11T22:19:00.000-06:00

On Sunday, we got 6" of snow here in north Texas! It was a wet snow, so not great for fort building or snowman building. But perfect for heading out on the "hills" of north Texas. The big girls and Woody spent the afternoon sledding and me and Aubrey stayed warm and welcomed them home with cocoa:)

To Ella's delight, the snow has not melted and is still around! This afternoon while I was making dinner, the big girls bundled up and headed outside...Aubrey was left behind. This is what she did while they played out back:

"Here Aubrey, have an icicle pop!"

"You want the big one or the little one?"

"These ice pops are cold!"

"Mom, why aren't we out there with them? I want to go out and play! It can't be that cold...can it?"

Heart Day

2011-01-06T21:25:00.000-06:00

Today is a big day for us...it's heart day! No it isn't one of those corny Hallmark Days that has been added to the calendar on January 6th. It is probably only a day that we celebrate here at our house and that those around us who know us and love us remember...but it is a special day for us.

Two years ago...we handed our precious baby girl, not quite 4 months old and not quite 9lbs, over to a nurse, who walked down a very long, white sterile hallway...to a waiting team who fixed her broken heart. It was probably the hardest day of our lives. But I will NEVER forget that day. Yes is was difficult and long and so hard, but the team of doctors and nurses that took care of her that day (and the month that followed) and put our minds at ease and fixed our baby girls heart and then cared for her like there own...THOSE PEOPLE deserve a round of THANKS today. We only did it once, but they do it all day, every day with hundreds of families each year. We will be forever grateful to them for the life that they gave to our baby girl...because without this fix...she would not be with us. And I can't imagine a life without this baby girl!

As I thought about it today...the emotions still run pretty high and are pretty raw and more than a couple times, I was almost in tears and probably squeezed her a little too tight. But I'm a more grateful person because of this day and when I see that scar peaking out of her shirt, I thank God that she is here with us and that we are so blessed to have her in our lives.

I'm glad that today came around when it did, because my girls have been so sick (Aubrey might have bronchitis now) and I was feeling overwhelmed by all the appointments and keeping everybody's medicine straight and given at the right time and keeping fevers down and snuggling everybody that needed it and well...reflecting on Heart Day, put it all back into perspective for me. Days like these are EASY in comparison. And while they aren't fun, I sure would rather be at home in my jammies snuggling my girls than in a hospital away from my family watching my littlest recover from heart surgery again. Heart Day helps us remember to be thankful...because sometimes we forget. Heart Day helps us cherish more, love more, hug more and slow down to enjoy the life that we have.

So Happy Heart Day Baby Girl...You have come a long way in two years! And we love you that much more!

In other exciting news: Aubrey is moving on to new milestones in the new year. For two years, (since heart day), we have been using a nebulizer almost every day. Right now, we are doing 6 treatments a day and holding that thing for her is getting so old. Today, when I set her on the couch to get ready, she took matters into her own hands!

She pretended to put the medicine in, sat down, put it up to her nose and was trying to turn on the machine herself! So independent these days! So I let her and was surprised at how well she did, holding it there herself for almost the whole treatment and readjusting it when it would slip and everything! (and yes, we watch Baby Signing Time for almost every treatment:)

At Aubrey's 2 year ECI evaluation, our PT mentioned that besides walking independently, the next thing on her checklist of development, was potty training! To be honest, she is really interested in potty training and almost every bath begins with taking off a diaper and her peeing on my rug! I have been dragging my feet a little and today during PT, we jumped the first hurdle and I pulled it out of the box.

She was more than delighted to sit on it and eat snacks. Up and Down, Up and Down, Up and Down for at least 10 minutes. Her only problem is that her feet don't touch the floor! Though she is pretty good about backing up and trying to sit down, I'm thinking we need a shorter potty or a little stool or something if this will ever work. (I have no hope that she will grow taller, fast enough). After that, are problem will be trying to find 9-12 month undies (or I'll be putting my sewing skills to use)!

Too Late?

2011-01-03T23:14:00.000-06:00

Am I too late to wish everyone a Merry Christmas? :)

My kids have been taking turns being sick and needing snuggles and comfort and so everything else gets put on hold:( I will spare everyone the "sick" pictures that my lovely husband took of us all on the couch the other day...we are a sad bunch. The sleepless nights, coupled with being 8 months pregnant, are starting to wear thin and my mind is focused on just the necessities of keeping everyone fed, hydrated and clothed:)

Hopefully, this week, we will put it all behind us and have a wonderful new (HEALTHY) year!

Funny Sick Ella: I do have to share about Ella's sickness, because I don't want to forget and it is just too funny! She gets REALLY HIGH fevers...105 is pretty typical for her and we know not to freak out too much these days...we know how to handle them. But she gets so deleriously funny when she is feverish.
*In the middle of the night, she'll start singing "John Jacob Jinglehimmerschmidt" as she is trying to fall asleep!
*Yesterday on the way to the ER, she insisted that we stop at the carwash FIRST, because Dad's car was really dirty!
*After not eating for DAYS...her request when she was finally ready to eat something...Pea Soup, String Cheese, Pickles and Hot Chocolate!

"Light" Reading

2010-12-22T22:57:00.000-06:00

Aubrey has really come far in a lot of skills and is working on books and reading currently...

Forget those cardboard, baby books. She likes the big books, with REAL pages, and the thicker the better.
(if you know her sister Kate and her "flipping page" fetish she had until she learned to read and write, then you will understand where Aubrey is at:)

So it comes as no surprise to me, when I find her sitting under the kitchen table "reading" to herself. A big book, with lots of pages...doesn't matter that there are no pictures...it is about the page turning...and she is very careful and rarely if ever rips...

Just catching up on some light reading:)

Must be reading the Christmas Story!

From Aubrey

2010-12-18T22:13:00.000-06:00

Have you missed my mom's updates lately?

My mommy has been SUPER busy just keeping up with all of us...and our new house...which is looking better, but still looks kind of like this:

My daddy is home for the next TWO WEEKS!!!

So mommy should be able to get ready for Christmas and get the house in order finally...and then catch up on my blog:)

But to catch you up a little, I'll leave you with Thanksgiving.
Balloons are such cheap entertainment...but I LOVE THEM!

We had a wonderful feast, and enjoyed the company of my Auntie Becky all the way from California, and my mommy's cousin Sonja who came up from Austin.

Now off to bed....

Blessed

2010-12-14T21:40:00.000-06:00

We are an incredibly blessed family...and more so because we have Aubrey in our midst each day...she has taught us more about ourselves in these last two years than we had learned in our 30 previous years...she has made our hearts grow and our love stretch in incredible ways. She is our Aubrey and we love her so.

So many children with Down syndrome are never born...I don't know if it is the fear of the of the unknown or the known amount of extra work that that little extra chromosome takes...I don't know...and I don't get it...but it is so sad.

In some parts of the world these kiddos ARE born, but the society they are born into doesn't support them or their families and so these children are sent to orphanages...even if they are loved tremendously.

Olga is one of those children who was lucky enough to be born...but unlucky enough to be in Eastern Europe where she has been left to be an orphan. Once these children turn 5 they are sent to an institution where the conditions are horrible and many do not live long. Olga is almost 5.

Reese's Rainbow is an International Down Syndrome Orphan Ministry. They strive to find homes for children like Olga. They set up grant funds to help families adopt these children. They have touched our lives...because of Aubrey...we might never have known about them if we didn't have Aubrey. This past year, we have been donating to Jacob's grant fund. We are proud to announce that he has found his forever family! And now it is Olga's turn to find her family. There is no lack of people wanting to adopt, but lack of money. An international adoption can cost over $25,000. In this past year, we have read and watched several families adopt internationally from Reese's Rainbow, and it has been such a beautiful journey to watch and be a part of.

Our friend Lily's mom Patti has become a WARRIOR for Olga, because she is almost 5. She has been blogging about Olga and pleading for donations into her grant fund so that she can find her forever family. She first wrote about it here:
http://babynumber10.blogspot.com/2010/12/most-important-post-i-have-ever-written.html

We encourage you, in this season of giving, to consider Olga. Every little bit counts and is helpful. She is every bit as special as our Aubrey and we hope that she can find a forever family soon. Donating is fast and easy. To donate to her fund, go to the bottom of Patti's post for more information.

Cleanliness

2010-12-11T20:33:00.000-06:00

It appears that Aubrey has more faith in my abilities to clean and sanitize everything in her world...

And feels that dumping her bag of raisins out on the floor before eating them...

Is a fine activity these days!

Good thing my new cleaning supplies came this week and I will be able to do a better job, now that I know her new habits:)

Glasses Update

2010-12-09T22:30:00.000-06:00

It seems like we've had a lot of appointments lately and there is so much updating to do...but first up tonight is the glasses.

Aubrey had a recheck today on her eyes. When she went 6 weeks ago, the doctor noticed that her optical nerve was enlarged. So today was the recheck on that. The doctor wasn't sure if that was "baseline" Aubrey or if there might be other problems going on. So the recheck was to make sure that it wasn't changing or growing...and it was the same! That being said...they are going to dig a little deeper. Our doctor seems lots of kiddos with Down syndrome and while it is not uncommon for them to have a larger optical nerve, in her experience, Aubrey's looked a little different than what she is used to seeing. She was also a little concerned, after doing some reading up, that there might be a connection between the sensory-neural hearing loss and an enlarged optical nerve.

What does this mean? Just to be on the safe side, Aubrey will be getting an MRI...which will be sedated. No hurry, she said, but she just wants to be sure and is 90% sure that it will come back fine. We will need to check with our cardiologist, who we just happen to be seeing this coming Monday, and check on anestisia requirements and whether they want her to have it done at the cardiac hospital or whether it can be done locally.

It was also decided that her vision wasn't bad enough and she appears to be seeing fine...so the glasses will wait for now. We go back in ONE YEAR! Seems like a long time, but I will be monitoring it carefully between now and then and we may go back sooner, or have her checked at the pediatricians anytime that we are there.

She was a happy girls today!

In other "GLASSES" news:

If your child all of the sudden starts watching tv like this:

(always from like 12-24 inches from the screen--yes a whole movie this way:)

Or has an eye that sometimes (or all the time) strays like this:

Especially after an episode of very high fevers...

You should call your eye doctor immediately!

Turns out that Ella has some eye problems too (not related to the fever...but could have been)! It all boils down to...she needed some glasses pretty bad! She has a few things going on, but the glasses will not only help her see, but should help with the straying...and if they don't by the time we go back in January, then we will have to do some patching of her good eye to strengthen the bad eye. THANK GOODNESS Disney got in on the eye patch thing too, because they have some really cool pink princess patches that should make that whole process a lot easier:)

So today, we picked them up and she is very pleased with her new pink glasses.

On the drive home she kept saying the funniest things...like:

Ella: "Mom, the trees look like they have rainbows on them (colored leaves:)."

Me: "What do they look like without glasses?"

Ella: "Just plain."

Ella: "Mom, the stop lights have big black dots on them too!"

Me: "What do they look like without glasses?"

Ella: "Just colors and little gray dots!"

I didn't really expect her to have such a reaction to getting them...but am amazed at what she wasn't seeing before and so grateful that she can see it all now. She is one smart cookie though and I"m a little afraid of what she will be able to do now that she is seeing everything so clearly!

Yes...we are still here:)

2010-11-29T13:09:00.000-06:00

Since Aubrey's hospital stay(two weeks ago) we have:

Sold a home

Bought a home

Went on a short trip to Minnesota (me, ella and aubrey)

Moved from one house to another

Celebrated Thanksgiving with family

Unpacked 1/3 of the boxes

You could say we have been busy...but that might be and understatement this time:)

Finally found the cord for the camera this morning so I downloaded the 533 pictures that have been on the camera for two weeks and am sorting through them. Lots of updates coming!

Just wanted you to know we are still here...healthy...and catching up on everything...including our blog.

Potty Mouth:(

2010-11-16T14:30:00.002-06:00

Today the words "POTTY MOUTH" took on a whole new meaning for Miss Aubrey...

There is no picture...for obvious reasons (I couldn't be bothered to grab it when there was more important things at hand).

Ella went potty (just pee)...left the lid up...forgot to flush...

Found Aubrey soaking wet...head to toe...as she exited the same bathroom...

Enough said...bath time at 2pm...on the double!

Home

2010-11-13T15:06:00.001-06:00

A promise kept...we are home. More later.

A Promise...

2010-11-12T19:57:00.000-06:00

He promised (baring anything crazy) he would only keep us ONE MORE NIGHT!

They are still concerned about her fluid intake. Which at 5oz today is pretty good concidering she is on an iv that is giving her fluids as well. She is typically an 8-12oz girl most days.

He also wants one more blood draw. Aubrey's M.O. is to do things very slow and her white blood count was up yesterday afternoon, but not a lot and he just wants to see where that is and make sure that she is still on the rise and progressing and not just fooling us with all this hospital attention.

She is sleeping wonderfully right now and her stats look great...she's been completely off the oxygen all day. He is going to ween her off the iv as much as he can with out loosing her iv sight...just in case and move all her meds to oral (they have mostly been iv).

He said he would write orders for us to go home in the morning as soon as all the labs were drawn and he saw them...HE PROMISED...and I told Aubrey that she would behave appropriately, or Daddy would be staying tomorrow:)

I know that she has this history and her own way of doing everything, but we caught it early and she is a whole year older and I think that should count for something...but maybe with a good track record this time, he will be less cautious with her next time and have a little more faith in her healing and our ability to do all this stuff at home...OR maybe there won't be a next time and we can prevent it all this winter:)

She was pretty much back to herself today and that means that she didn't want to sit nicely on my lap or in her crib. She wanted the freedom to run around and play...a great sign.

(I jinxed myself by packing up our stuff this afternoon--but I"m only pulling out my jammies and toothbrush--the rest is staying packed!)

How we are doing...

2010-11-12T12:12:00.000-06:00

...since we are here an extra day or more...

OK...I'd say! We decided that it was time to order some dessert last night and MOMMY got to have some chocolate cake...Aubrey had baked potato...because of all the things on our trays to choose from, THAT is what she wanted to eat!

Her appetite seems to be back...or maybe it is the choices that I am finally giving her. At this point, I don't care what she eats or drinks as long as she does and we will detox at home!

She was over the moon yesterday when I let her have a hotdog and french fries!

Aubrey finally got to have a sponge bath last night and was at least looking much better than she had been.

Wednesday night, she slept almost 12 except for being woken up to do the vest treatments. Yesterday she had a 2 hour nap in the morning (9-11) and then was back down for another 2.5 (1:30-4) hour nap in the afternoon. She was sleeping so deeply in the afternoon that we had to give her oxygen and she wan't even stirring when we did vitals and others were talking in the room. This is highly unlike her and I was very concerned. I asked the nurse to call the doctor and order the blood work for last night to maybe see what was going on. She was ready for bed at 6, but I kept her up a little to skyp with Daddy and sisters, but then she slept 12 straight hours last night. The Respiratory Therapist skipped the vest to let her sleep and just did CPT by tapping her back and she barely stirred all night, but they did put the oxygen back on her before bed, but just really low.

We are awaiting the doctor now, for official blood work results, but the nurse told me that everything looked ok. Tamiflu has a cumulative affect of dizziness and drowsiness and so they think THAT is catching up with her and making her so sleepy...but we wait and still hope...but have made plans to continue being here.

This morning they took her off the oxygen again and even let me unhook all but the iv so that she could get down and walk a bit. She is very wobbly and just kept going over to the door wanting to go out and play...I don't blame her:( So I let her play by the window and that seemed to be a good compromise.

(For those wondering--she isn't hooked up to oxygen, but I didn't want to have to keep putting the canular on and off, so I just popped it up on her nose for now)

She is napping again now...and peacefully...so we are just waiting to see what the doctor has to say today.

Staying here...

2010-11-11T13:09:00.000-06:00

... he said no.

She is on pretty high doses of nebulizer treatments and still on the iv fluid (and not drinking anything on her own-likely because she isn't thirsty!). His fear is that if he backs down to "home care" level and takes her off the fluids to go home, that she will relaps and have to come back. He would rather back down to that level here and monitor her and not take chances given her history of not following the book.

A little upset that he didn't mention the meds yesterday as a home criteria, but in the end, he only has her best interest at heart and he has ordered one last lab in the morning and will set up discharge papers as long as tonight proves uneventful for her

So one more night...we hope.

Overnight and Q & A

2010-11-11T11:01:00.000-06:00

Our goal last night was to keep her off oxygen...

When we arrived, she was at 1 liter of oxygen. Yesterday they had her down to .5 liter. They decided to turn it off and see how she did...not good. I recommended that we do it point by point, since she seems to think that she needs the smallest bit of oxygen. We got her down to .1 last night...which is like NOTHING, in case you were wondering, but we just couldn't get her completely off! THAT is not enough to keep me here another night and I will express that when the doctor comes. They took her off completely this morning and she is doing great.

This is mostly for Daddy, but this is her sleeping stats right now...

I'm not packing yet...but hope to be soon!

Q & A

1. How do you do it?

With lots of help! Woody and I each have our roles and mine is hospitals. He would rather do ANYTHING other than hang out here...even over night and it would tear me up to be away from her when she is so needy...so it works out. While our immediate family is far away...we have a wonderful "family" here who step in at a moments notice to help watch kids, which is sometimes our biggest need.

Faith...We trust God's plan and purpose for all of this. Another Dad wrote on his son's blog today about something he had read in a book this week and it says exactly how we feel...

(Matt is the lead singer for Sanctus Real and he blogs about his son's heart surgery and hospital stay here.)

“I hear religious minded people say all the time with good intentions. ‘God will never place a burden on you so heavy that you cannot possibly carry it.’
Really?
My experience is that God will place a burden on you so heavy that you cannot possibly carry it alone. He will break your back and your will. He will buckle your legs until you fall flat beneath the crushing weight of your load. All the while He will walk beside you waiting for you to come to the point where you must depend on Him.
‘My power is made perfect in your weakness,’ He says, as we strain under our burden.
Whatever the burden, it might indeed get worse, but know this-God is faithful. And while we change and get old, He does not. When we get weaker, He remains strong. And in our weakness and humility, He offers us true, lasting, transforming, and undeserved grace.”

-Greg Lucas

2. What are they doing for Aubrey?
She is getting the drug Tamiflu for her flu bug. She has some virus/cold that is making the breathing harder and so they ~~have~~ had her on oxygen. They are doing Respiratory Therapy every 3-4 hours. She is little and things tend to settle in her lungs and she can't get them out. It is better this year, because she can actually have a "productive" cough and get some of it out herself. Therapy consists of nebulizer treatments and CPT-cardio-pulminary-therapy. It is an ever evolving therapy and they try all different things. This time we have a vest that fills with air and then "shakes" her! Whatever works I guess.

(pardon the look--it has been a few days since a bath happened and the hair is getting out of control:)

3. What will you do for the rest of the season/holidays?
   It is 77 in Dallas today-not that we would know since we haven't left our room since Tuesday-but it is hardly winter here and she is already getting sick. We will go under strict house SANITIZATION. I have to admit I have been a little lax about the girls coming home from school and playdates and washing up before playing with Aubrey--but that will change and we will be strict about all who come for therapy and visits. It is important...so it must be done.
   While we don't / can't hold up completely in our house all the time, we will do the best we can to at least keep her away from germs when we go out. So if you see us and we scoop her up and don't let you hold or touch her...it isn't cause we don't like you...but we are just trying to keep her healthy.

4. Are you used to the hospital thing?
   You never get used to it...you do get better at it. I know what we need to have here, to make it easier. I know how to better advocate for her and to TELL them how to make their lives easier, because we have done this before and I KNOW what has worked in the past. There will likely be a bag packed in the car all the time now...just in case. Being prepared and organized is key and makes life easier on the man who has to take my list of ~~demands~~ requests and gather them each night to drop off!

Thank you for all of your prayers and words of encouragement and help. We appreciate it so much. Along with the Lord, we couldn't do this without all of you either.

We'll let you know what the doctor says later...

Update

2010-11-10T13:29:00.000-06:00

NO PNEMONIA!!! The doctor was just in and said that her x-ray looked fine and they ruled that out and took her off one antibiotic that they had started as a precaution. He left her on another because her white blood count was low. He assumes that as she feels better it will go up...and they will double check it before they discharge her.

She is slowly starting to eat...she had chocolate ice cream for dinner last night, crackers at 4 this morning...and a yogurt for breakfast. So they decreased her fluids and have also backed off the oxygen. She is barely on anything, but we are hoping to have her off it tonight so that we can go home in the morning...it's the only thing keeping us here. As with the past, Aubrey doesn't follow any rules of anyone else, so we are cautiously optomistic.

Another option would be to go home with oxygen and a pulse oxy meter again. We have been there done it before and would rather be home together with all that, than separated just for oxygen use.

A few pictures from yesterday and today...

She fell asleep in the chair at 9:30am yesterday while I was calling the doctor...

Ella was with us all day yesterday and was highly entertaining for all the nurses:) I did finally get them to rest a bit with some baby signing time video! (yes, I grabbed a few things before heading out the door yesterday! My theory was that if I packed a bag for us...we wouldn't need it...but we did and I'm so glad that I had the dvd player and video and jammies)

WHAT DO YOU MEAN WE ARE STAYING HERE! I DON"T LOOK SICK!

At 4am this morning she was feeling much better and thought that we should ALL be awake and read books and play and talk and eat!

Just checking my stats Mom! (Isn't it great that she can reach all her monitors and ivs from her bed--but I let her walk around in the crib since she can't really go very far on the floor because of cords--she would REALLY love a walk down the hall)

Aubrey thinks that her changing pad makes for a very good seat to watch cartoons on!

Hospital

2010-11-10T10:01:00.000-06:00

Just a quick note to keep everyone in the loop...

Aubrey was having some trouble breathing yesterday morning, so I took her to the pulminologist for a check and wouldn't you know it...she was stating at 82% oxygen...and she has the flu! He also heard some raspiness in her lungs and thought she might possibly have pnemonia.

So we were admitted to the hospital for some oxygen and to get some x-rays done and get on top of the flu. We are hoping that the x-rays will be clear and that everything improves and we are home quickly.

We will keep you updated.

Time Change Troubles

2010-11-08T20:14:00.000-06:00

The time change, coupled with the fact that she has been sick, have messed up some sleeping habits at the Smith house...really just Aubrey. I'm sure many are feeling our pain! I will say that she hasn't gotten UP any earlier in the morning, which is a blessing, but this is what Aubrey does, while she should be sleeping at night and can't because she has taken two naps or a late 4 hour nap or gets a second wind because someone thought that at 2 she should be big enough to partake in Halloween candy eating after dinner! (You decide:)

Accessories

2010-11-04T14:08:00.000-05:00

Some have ask about the cost of Aubrey's accessories...and I'll admit, when I hear about someone else getting something, I'm always curious too:) So Aubrey is willing to dish on cost today!

Orthotics
Aubrey's Sure Step (I'm not sure if there are different brands--that is just what our doctor does for kiddos) orthotics cost $1600 total, before insurance. Our insurance at the time covered the entire cost of them, but it would be different for everyone always dependent upon insurance. Her feet are really small and she was wearing a 0-1 size shoe before them. Now that she is on her feet, and they are growing a bit, she would wear a 2-3 without orthotics and wears a 3 with them on (which is all the time).

Replacement is debatable. There are a lot of little adjustments that they can do to her current pair, before we would have to replace them, but we know what to look for as she grows and see her doctor every three months. I'm hoping that we don't have to replace them too often:)

Hearing aids
Hearing aids cost about $3500. Our old insurance covered $1000 every three years (the warranty runs out after 2), and the rest is out of pocket. This is one of those loophole things that doesn't even work towards your deductible:( Our new insurance doesn't cover them at all. So after the warranty runs out, we are out of pocket for the whole thing and it doesn't go towards deductible either. The warranty that we got was about $200 and covers EVERYTHING...including water damage and if she looses them. Only thing is that if she actually looses them, we pay a small fee of $75 for new ones. Not bad all things considered.

Glasses
Since we haven't actually gone to get Aubrey's yet, I don't know the actual cost. We have pretty good vision insurance right now, so that should help, but I have heard that it is best to spend the extra money to get the completely flexible frames so that we aren't replacing them frequently. Ballpark I've heard is $600, but I guess all that would be again dependent on your individual insurance.

Her eye exams are done at a pediatric opthimologist, so we only pay our $10 copay for that visit and she gives us the prescription to have it filled at an eye glass store, so I think in the end we will come out ahead, because my eye exam always costs me WAY more than $10. So if you are in the market for new eye wear for your little one, I would definitely go to a pediatric opthymologist first and take the short cut on the the cost of the eye exam.

So there you have it...all her accessories for the year! I'm thinking that besides replacements, we should be done shopping for accessories for her now! It has been a busy and expensive couple months...but so worth it when we can see her up on her feet walking and hear her making new sounds and working so hard towards talking. I think that the glasses will just provide her with better sight for getting into trouble! Not sure we will enjoy that so much;)

Wordless Wednesday

2010-11-03T08:05:00.000-05:00

Getting Better....The INCREDIBLES

2010-11-02T20:31:00.000-05:00

I am happy to report that Kate scooted off to school today with Alice and only has her tiny cough (and a dramatically painful ant bite on her foot) slowing her down.

Aubrey is fever free today, but the snot factory is requiring at least two baths a day to clean off the face and get it all out of her hair! I think the congestions is preventing sleep now and she just cries when you put her down...so hard to suck your thumb when you can't breath through your nose:(

Ella still spent most of the day in the same state she did yesterday, but kept her fever below 101 all day and was willing to finally take a bath tonight and brush the rats nest out of her hair! My funny sick girl, I knew she was feeling a bit better when she asked for lunch...string cheese! For dinner...milk and pineapple! What she REALLY wanted was pea soup...but I ran out of carrots to make it and it just didn't seem appropriate for someone who hasn't eaten anything in days!

Aubrey is crying again, so all I got time for is one Halloween picture of our INCREDIBLE FAMILY!
(we had some wig issues here in the beginning, but this was the only group shot that turned out)

Happy Halloween from Mr. Incredible, Elastigirl, Violet, Dash, Jack-Jack, and Edna Mode

(I'll post more about our weekend later:)

Halloween Hangover...

2010-11-01T09:57:00.000-05:00

While I would like to say that this all started today...but this has been a reality all weekend. They did perk up enough to get dressed up and do a little trick or treating, but we are hunkered down this morning with jammies, juice and cartoons.

(and just in case you are wondering, Ella is my "high fever gal" and she does it this HIGH every...
single...time...usually just a virus...nothing we can do...but we will all be heading in to the doctor this afternoon to find out for sure)

Will post some Halloween pictures and updates when I can...

Wordless Wednesday--New Hangout

2010-10-27T20:27:00.000-05:00

Chores

2010-10-25T20:53:00.000-05:00

It may seem silly to have a 2 year old, with Ds, who just started walking, to help with chores and work around the house, but I did it for my other kids and why should she get off the hook!

Of course, Aubrey's chores are modified, but we remind the kids frequently that this family that we are in is a TEAM and that we all pitch in to do things and not just mom and dad doing everything...which means that to make it FAIR (because we all know that everything in life is fair:), Aubrey has to help out too!

Dishes: Aubrey helps me empty the dishwasher when she is around and I'm doing it. I take all the heavy or breakables out of the bottom rack and then she hands the rest of it to me one by one and I stack them on the counter. She also helps me with the silverware, taking it out of the basket and handing each piece to me one by one.

We have a rolling cart with three drawers for the kid cups, bowls and plates. Sometimes I will hand Aubrey one cup/bowl/plate at a time and she will put them into the drawers for me. I haven't started leaving the drawers closed to see if she can "match" yet, but hope to soon in the future. They are just a little sticky and she has troubles opening them.

Laundry: She loves the laundry room and frequently shuts herself in there:) When I've sorted clothes into piles, I put one in front of the washer (we have front loaders) and Aubrey puts all the clothes into the washing machine. She is pretty good and only needs a little help sometimes. She is also very good at taking the wet stuff out and handing it to me, so that I can put it into the dryer.

Folding, she isn't so good at, but she loves to have a whole pile of dish towels or wash clothes to "try" and fold. Soon...very soon...she'll get the hang of the half fold and then I've really got a helper:) But for now she just enjoys jumping in the piles (think pile of fall leaves and you'll see the enjoyment:).

Clothes: She is better at taking things OUT of drawers and piling them up on the floor, but we are working on the putting things INTO the drawers...unfolded yes, but the smile she gets from having actually put it into the drawer and slammed it shut is priceless.

I do let her help me fill the diaper basket when it is empty, and she loves that.

Do these chores take me three times as long when she is helping? ABSOLUTELY! Can she do the chores? ABSOLUTELY! Are we proud of her and she of herself? ABSOLUTELY!

I've learned that I can't underestimate her, just because she is smaller or is taking longer in some developmental areas...I just need to adjust things to her level and continue to push her to new levels. I'm sure that my other girls were doing much more at 2, but she'll get there and I do believe that she is working harder at 2 than they ever did!

Hidden Opportunities

2010-10-24T21:00:00.000-05:00

I am always looking for more/better opportunities for "work" to do with Aubrey. I can't decide if that is a good thing or not, but I'm always thinking about it...if she is just sitting in the car seat or stroller, I think "what can she do right now...what can I give her to stimulate growth and progression in her development?"

Sometimes fun and work can go hand in hand:) You just have to be looking for the right moment and way to adjust the game!

A couple weeks ago we had Oktoberfest at our church and the youth had set up some games where you could win tickets to turn in for prizes. Once I got over my fear that she would be run over by the big kids, we found a Ring Toss that no one was playing with to use.

My idea was to give her the rings and have her put them on the stick...but she didn't want to do it standing...

Or while she was sitting...(she just kept handing them back to me:)

She wanted to figure out how that stick was in the ground and use GROSS MOTOR to get it out!

Sometimes the best laid plans...don't go the way WE want them too, but in the end, maybe she did get something out of it all:) At least she wasn't just sitting in the stroller or being held.

And what would she rather do than play Ring Toss...

Head over to the playground and swing...no doubt!

Find those hidden opportunities all around you...not just during therapy or at home:)

Q and A

2010-10-23T22:04:00.000-05:00

Need to catch up on some questions and answers I guess tonight:

Pumpkin muffins: came from my good OLD orange Betty Crocker book! I just sub chocolate for the raisins, about 1/2 cup of the mini is good. We made big muffins and mini muffins for Aubrey! So yummy right out of the oven with a little coffee:)

Jammies: They are from Gymboree. I bought them last year at the outlet mall and got the big girls in a size larger so that they could use them two years in a row. This year I just needed to get some for Aubrey. They are in the regular store and on the website, for $12, come in pink or black, and at the outlet, they were $10, but I had a coupon too! Come in size newborn up to 12 and also in adult I think:) So next year, only Aubrey and Alice will need them and hopefully I can get those on sale this week:)

Baby: We are due on February 6th, but it will be a repeat C-section so think end of January sometime...no date has been set yet. We do not know if it is a boy or girl. They weren't able to tell at the last ultrasound and we aren't willing to pay for another one just to find out. Our first three girls were all surprises by choice. We found out with Aubrey because the girls really wanted to know. We are OK with having a surprise baby:) Makes it kind of exciting...we think! So few surprises in life and I love when we are in the delivery room and Woody gets to announce our newest arrival!

Eyes: I thought that at the opthamologist office we would just check that we had been and everything looked good....wrong:( She is nearsighted in both eyes and has a stygmatism in the left eye. We will be getting glasses sometime soon. But I have decided that instead of being bummed that Aubrey now has more expensive accessories (hearing aids, orthotics and glasses) than I do, we are going to ROCK THESE GLASSES and also I told Woody that if his kid's accessories cost more than mine...that maybe he needs to think about getting me ahead of her again:) Just a small hint!

Walking: Aubrey is FINALLY walking about 80% of the time! We are so proud of her. Been trying for days to get a good video of her doing it, but she is unmotivated to walk if she sees I have the video camera out! Funny girl.

House for sale: We have our house for sale and are moving to a neighboring city for many reasons, but mostly because it has a better school district for Aubrey. The big girls go to our Christian Day School, so moving won't affect them at all in that way. We will actually be closer to their school and to Woody's office so really it is a win-win for everyone. We are moving around Thanksgiving, so hope to be all settled for Christmas and the arrival of the new baby.

Camera: Ella accidentally knocked over the good camera, so no new pictures for now:( Will try and get some with the old camera if I can find the charger for it.