Wednesday, October 27, 2010

Monday, October 25, 2010


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!

Sunday, October 24, 2010

Hidden Opportunities

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 doubt!

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

Saturday, October 23, 2010

Q and A

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 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.

Thursday, October 21, 2010


It happens to one said that motherhood was easy...and just gets to be too matter what kind of "SUPER MOM" you are most days:)  You know those June Clever/Martha Stewart Moms who do it all and have a wonderful meal on the table every night and are crafting with their kids and everything just seems to go smooth at their house:)

Down Syndrome Awareness Month...31 for 21...the reality of life is that sometimes, I get overwhelmed, just like every other mom out there.  Most of the time, life is good, and we are celebrating great milestones and the joy of our sweet pea...but can become a bit much and that is the reality of motherhood...not just those of us who have children with Ds.  So my lack of posting this week...

I don't know if it was the blogging everyday and questions that had me thinking about ALL the therapy that we have every week, or ALL the specialists that we see, or ALL the extras that come with that little extra something special...

Maybe is is struggling with the hearing aids (one defective--sent back to manufacturer last week, other one acting up this week)...We've been there every week for the last month and they aren't a CLOSE or CONVENIENT appointment...

Maybe it is the pregnancy hormones:)

Whatever it was, it was our reality this week and that is what this blog is for...reality...and I don't ever want to convey that life is ALWAYS peachy, even though most days it is, but we are over it for the most part...


Well, first, you hand out new jammies for everyone and stay up waiting for Dad so that you can scare him!
(they glow in the dark:)
And in the morning we baked:)  Most of the time you would find something chocolate in the mixing bowl when we are having a week like this, but not in October...Oh is fall and so in the spirit of the season, we made our SECOND batch of Pumpkin Chocolate Chip Muffins! (and we made it a double:)

(Nah, Nah!  You can't get up here!)
And we waited...

And then we each ate three!  Hot out of the oven!  And had no guilt about it!

And then, I let my kids loose in the pantry to CRAFT!  
Aubrey, who is not usually allowed free reign of the crafting supplies, much less markers, thought that she was really getting away with something!
And she wanted to see how many she could stash in her hands and get away with at one time!
And even though she couldn't get the caps off...she was in heaven thinking that she was coloring all these beautiful pictures:)
And all was right in the world...

And instead of cleaning for house showings or finishing up the piles of laundry or getting dinner going so that the afternoon wouldn't be crazy...
 We played hopscotch!  And we laughed and smiled and giggled!  And we just stayed in our bubble of happiness.
Those worries and appointments and phone calls and laundry and dishes and whatnot, were all still there after the fun, but we needed the break to set ourselves right again and get back on track.  We all need that sometimes...

So every once in awhile, take off the super cape, grab yourself a good cup of coffee and some chocolate (or pumpkin:) and enjoy your kids...I guarantee, the world will be right again in no time...and you will be ready for the next load that the world brings at you.

Today we went to the eye doctor...but that's a post for tomorrow:)

Wednesday, October 20, 2010

Sunday, October 17, 2010

Neglect...and Balance

So I neglected my promise yesterday to get a post up, but for good reason.  It is very rare that I actually get out of the house alone to do anything.  Not only did I get to run to the fabric store and grocery store really quick after bedtime, but I got a last minute invite to head out to the movies with friends!  So a relaxed and happy mommy is well worth missing a post:)

For today, I must admit some neglect.  Aubrey has 5 therapist that come to the house weekly.  Nutritionist, PT, ST, Auditory Impairment, and Developmental Specialist.  Seems overwhelming, but we have it almost down to a science.  They each have there day and time, usually in the morning, and then the day is ours.  But between these regular therapy sessions, and appointments, and unexpected appointments to other doctors and trying to sell our house and have showings...we have not been working really hard outside of therapy on our skills:(  Lucky for me, Aubrey is a fast learner and once given a task, usually picks it up without too much practice, but I'm feeling kind of bad these days that her only "work/play" time is with her teachers.

Last week, we ended up with a showing that happened to be right after therapy, and I was behind in my cleaning and getting the house ready.  Did I mention how AWESOME our team of therapists is?  Well they are and even though I didn't say anything, I was granted permission to finish making the beds while Melissa and Aubrey had ST one on one.  She was curious to see what Aubrey would do...and she did well without anyone there to distract her and she fully cooperated with all that she was asked.   It was a good test of how she would do with out me always sitting there.

After Melissa left...I just had to do a quick vacuum of the entire house (a good 30-40 minute job).  Aubrey likes to sit in this chair in our bedroom.  Partially because it is really comfy and partially because she is able to get up into it herself:)  She went straight in there after therapy while I was vacuuming downstairs.  (good PT practice though:)

As I was about to get started on the stairs and head up...I found her like this:)

She got tired of waiting for someone to feed her lunch and put her down for a nap and just took care of it herself!  My sweet, neglected girl!

Yes, I did finish all my vacuuming before I scooped her in the car to finish her nap...but she was rewarded with lunch out for her troubles!

Sometimes, when I stop and actually think about her schedule and the things that we do for can get overwhelming.  BUT, I am not afraid to cancel an appointment if we just need a break...and very rarely do I do make up sessions if we miss one.  We do the best we can and you just can't ask for more and sometimes, too much of a good thing is not so good.  Although I feel like we need to do the work that the therapists ask us to do weekly, I don't ever let the "work" become our whole day.  I feel like it is just as important for her to go to a good music concert or play in the dirt or just giggle on the floor.  It is important to have a balance of everything.

Someday's it feels like all we do revolves around Aubrey and the things we do for her because she has Down syndrome.  And it is then that I step back and remind myself that the Ds is only 1/47 of who she is and she is mostly just a little girl who needs love and laughter and friendship, just like everybody else.  Sometimes the balance comes easy and sometimes it doesn't, but we're getting there.

Friday, October 15, 2010

Giveaway Winners

Giveaway winners from Tuesday's Snack Bag Post:  
#2  Patti said...
How exciting! I love the one Aubrey is playing with :)

#5  Kelli said...
Great job Aubrey! I think Lindsey would have pitched the fork and bowl off the high chair before she even realized there was food in it.
I like the last bag shown with the swirls.

CONGRATULATIONS!  Hopefully these will make snacking and eating more fun and work on all those fine motor skills for Lily and Lindsay.
Contact me with your information and I'll get these out in the mail this week:)  For everyone else, 10% of each order from now til the end of the month still gets donated to NDSS.

31 for 21--Day 13

A Story about My Two
How to Live in the World of Possibility
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.

Thursday, October 14, 2010

31 for 21--Day 14 can sometimes be a very dreaded word.  It's one of the first things that I thought about when I found out Aubrey had Down syndrome...she would be delayed...behind her peers...forever trying to catch up.

For the most part, I have gotten over it.  Maybe it is because she is so small and that is a fall back excuse, because just learning to walk is a 1 year old thing...and well that's how big she really is...or maybe it is because the LOVE for her is so much greater and that far outweighs anything else that comes our way...or maybe we are just so grateful that she had open heart surgery at 4 months old and is completely healed that nothing else really matters in this world except that we get to have her each day.  What ever it is...I'm over it.

Sometimes the "work" just gets tiresome and old though and we get lazy and stop practicing, because, well, sometimes you just need to LIVE and not think all the time about what you should be doing or need to be doing with her and just ENJOY her...and that is where we are at in some of her development.  I have found that I just want to enjoy activities instead of worrying about what she is or isn't supposed to be learning.  She'll get it all eventually...

BUT, what I love about these long awaited that sometimes, we spend soooooooooo long working at them, that you never think that they will happen.  And then one day, when you aren't even working on it, and you are standing in the kitchen making dinner while she talks in the other room....IT happens.  And you would think that it was the 4th of July and there were fireworks in our own backyard, because when you wait so long for something and work so hard for it...that milestone is priceless.

 I'm guessing that most people don't mark this one off in the baby/toddler books...
 But tonight, she climbed up onto the rocking moose...all by herself...for the very first time!  AND she did it while holding onto her baby doll!
 She had wanted to do this for 6 or 7 months...and tonight she finally found success!
So much so that she didn't even want to get down:)
And it was so worth all the hard work and waiting and trying that we have been doing all this worth it to see her enjoying it and doing it over and over and over again:)  The milestone celebrations will never get old ...I promise!

Wednesday, October 13, 2010

Tuesday, October 12, 2010

31 for 21--Day 12 with a GIVEAWAY

Many children with Ds have feeding issues...Aubrey did too.  I say did, because with A LOT of hard work, most work past their problems, and she did just that.

I wrote a lot about her first year of feeding issues last year if you were interested in going back and looking at how we got from bottle feeding, to breastfeeding and then on to solids and cup.

One year later, I can say now that I am only cutting grapes in half and not into eighths!  She is drinking from any cup provided, but much prefers to have Mommy's water bottle (that has a straw) to her own straw cup.  She eats just about anything.

Once she started eating, I really tried to give her what we had as much as possible and she loves it.  She loves, eggs (which we found out she has a sensitivity to and limit to special occasions), pickles, hummus, pasta, crackers, tuna, raw carrots, and anything that is dessert like:)  We are lucky that besides being less than excited about milk and cheese, she is a great eater now, and on par with her peers...though we are working on spoon self feeding still...but that is mostly my fault since I don't like the mess that goes with it.

Tonight we had a favorite:  Tuna Pasta Salad...a recipe from my own childhood.  So I thought that I would share it.  I usually make a double batch because it is such a favorite around here and the kids love leftovers.

1 lb. pasta (elbow works best, but anything small and fun works)
1 can of tuna (drained)
1 cup cheddar cheese (cubed)
1 cup pickles (cubed or that small)
1/2 onion chopped (I usually leave this out since I am the only one who likes it in there and I get so much grief from everyone else about it other wise--pick your battles)
Mix with mayo to taste (about 1/2 cup)

I don't measure anything anymore...I just eyeball I think this is about right.
Notice that she is so busy stuffing face that she is just holding her fork instead of using it:)  Just can't waste the time on a fork for something that you love so much.
Eating takes so much fine motor skill, like using a fork and the pincer grasp and so I am always looking for ways to keep her working at improving those fine motor skills.  The snack bags that I make in my etsy shop are a great example of that.  I've been making them for a couple years, and never dreamed that Aubrey would be able to use them for quite awhile, but she can and has been for awhile.  Earlier this year, I started making them with little ribbon tabs so that my big kids (Ella 3yrs) could open them herself and added a gusset at the bottom so they wouldn't spill all over.  Success for her and Aubrey.  Aubrey even seeks them out in the diaper bag to help herself to a snack whenever she wants!  It takes her all of about 5 seconds to open them up now...depending on how new the velcro is:)  We are so proud of her strength and determination...but just be sure the reward is worth the work, because if she finds a snack that is not what she wanted...SHE WILL LET YOU KNOW!  Kid has her favorites:)

I love how she sets it up on the floor for herself so that it stays open:)
Giveaway:  I am giving away some of my snack bags to help others with their fine motor skills and to celebrate Aubrey's accomplishment.  

There will be two winners chosen.  Each winner will receive a large and small snack bag in pattern of their choice!   These are some of my choices, but there is a lot more fabrics and bags in The Umbrella Girl Shop.
Anyone in the continental united states that reads this post can enter.  (not just people who have a child with Ds)  Just leave a comment  about which bag you like the best and you will be entered.  I like to make it easy:)  
Giveaway ends on Friday, October 15th at noon CST.  Winner will be announced sometime Friday night.

During October, I am donating 10% of all my sales to the National Down Syndrome Society, so if you haven't started thinking about Christmas gifts already, now is a great time.  I'm adding new designs and fabrics all the time...and it supports a good cause.

Monday, October 11, 2010

Your Typical Two Year Old

Aubrey is your typical two year old in so many more ways than you think.  We know she is behind in areas, but when you look really close, she is more like her peers than one might think....and sometimes we have to remind ourselves to look past the Down syndrome and all that comes with it and just look at the beautiful little girl that we have been given and see that she is doing everything she should be.

She has a "vocabulary" of almost 80 words!  Signing counts on all the tests and she really does know them and is starting to use them and put two or more signs together to tell us what she wants!

She loves music and dancing and laughing and parks and walks...and dolls!

Sure, her Bitty Baby is almost as big as her...
and heavy...
but Aubrey "loves" her just the same and as gently as she can, hugs her and feeds her and burps her and tucks her into her bed.  Covers her up with her blanket and everything.
And tries to hand her off when she gets to be too much...

And when baby won't behave...she chokes disciplines the baby:)

Just like all the other typical two year old girls out there!

Sunday, October 10, 2010

Halloween Fun

We got a wonderful box from Gramma Nancy and Granddad Mark this weekend and had fun playing dress up!

I'm working on Halloween costumes no long post.  We are going as a theme and I'm really hoping that Aubrey decides that walking in a costume is so much more fun than scooting around on the sidewalk this year!  Last year, we went with a Peter Pan/Tinkerbell Fairies Theme and it was REALLY cold.  (we had to dewing and put sweaters on:)

This year the costumes are all set for the cold weather, so I'm guessing that it will be really warm!  Hopefully the kids won't sweat too much.

Saturday, October 9, 2010

31 for 21--Day 9

In the beginning, when you first get your diagnosis of Down syndrome, you also get  a LOT of information.  But since I started blogging and meeting families, I have learned so much more.  The good, the bad and the ugly...and by that we mean lukemia.

On our sidebar, we have two little girls who are in the midst of battling lukemia.  Ella Grace is 2 and Emily is just 1.  They are fighting for their lives right now and it just tears us apart to think of such little warriors fighting such an awful disease.  That is the ugly and bad news, the good new is...we can help and you can help!

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:

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 could be the match for one of our 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 Ella Grace and Emily and Aubrey and all those other littles out there, with and without Down syndrome who are waiting on a match.

Click on Aubrey's button to take you to the National Marrow Donor Program site to join today and then come back and let us know you did.  Let's see how many people we can get to join this month!!!

Friday, October 8, 2010

Just Another Ordinary Day....

People ask me all the time..."How do you do it?".

My answer comes from what I learned in the NICU.   They write down EVERYTHING and they are SUPER organized!  I learned very quickly, that I would have to do all that once they handed Aubrey over to my total care.  I have a notebook that I bought right when she was released from the hospital and it is FULL and I moved onto a second one during her surgery that became almost full too.  Unfortunately, it is packed away or I would have taken a photo, but basically each day had it's own page or two, depending.  When you are feeding around the clock, you have to pick a time that IS the next day.  So 5:30am was a new day.  I did time, what she actually drank from the bottle, poops, pees, any meds, doctors appointments, weights, therapy, outings, ect.  Anything that happened that day to Aubrey in that day including naps, got written down.  It enabled us to find patterns to problems or low weights and fix it easily...and when you are so sleep deprived, you can't possibly remember everything!

I gave it up at about 7 months.  Partially because she was nursing and it was harder to keep track of and partially because she was doing so well that it wasn't necessary to be so detailed.  When she was sick and hospitalized a year ago, I did go back to my note books system and charted by time the meds and nebulizers that she needed to do when we came home, but I only do that when she is sick.

Now days, I carry a 8.5" x 11" calendar in the diaper bag and we have a giant calendar on the wall at home.  It is mostly just therapy and appointments and school functions for the kids these days, but most of the time we have something booked for the day.
But TODAY...looked like this:)
Completely Blank!  Just another ordinary day with nothing planned and nothing scheduled and nothing to do:) We stayed in our jammies until lunch time and we lazied around and just played...just like everybody else, that has nothing on their calendars for today...see, we may be busy, but we are more like everyone else than you think...we have ordinary days too:)
Confession:  I did some sewing today too:) and Aubrey likes garbage cans.  So she picked through mine and chose to play with my wad of strings.  Kept her busy for 30 minutes while she picked off each sting individually!  Talk about fine motor skills practice!

Thursday, October 7, 2010

31 for 21--Day 7

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 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.

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 just isn't gonna be fun...but we'll get through it. 

Burpie Sets

Soon you will see these "Burpie" Sets in the shop.  I still need a few more pictures before getting them into the shop.  So many people have been asking for a "Newborn Baby Set"  that includes burpies, diaper keepers, changing pads, pacifier keepers, bibs and more, so slowly I have been working out the patterns and samples for all these things.  Tonight, here is a preview of the burpie sets that I have ready.

This last one is inspired by my own winter baby coming and I have never had a winter baby so I love the idea of snow flakes and snowmen to celebrate my littles arrival!