Happy Halloween

Really quickly gonna get this one in before midnight. I know the grandma's were looking for pictures earlier, but we just got home from a great party. It was such a fun day and if you know us at all, you know that we really do have HUNDREDS of pictures from the day.

Happy Halloween to everyone out there.

Love from,

Captain Hook

Peter Pan

Fawn, Iradessa, Tinkerbelle and Silvermist

Cardiology

Aubrey had a cardiology appointment this afternoon. It has been since June! We were so used to seeing Dr. Kao so often that it felt a little strange (in a great way) to not have seen her for so long.

Last time they had taken her off her lasix and she is doing great and sounding great. Her O2 level was at 99! Before surgery we were living in the high 60's low 70's for reference. 99 is awesome! She now weighs in at 14lbs (almost 14 months old), but staying on her own curve and is 26 inches long, so growing!

Echo done at 2 weeks (she was less than 5lbs at this point)

Today at 14lbs--What a difference! She looks like a giant compared to herself a year ago!

They did an echo (ultrasound of her heart) and I was worried that they would want to sedate her. I have been reading that a lot of kids have to be sedated and was worried that now that she is older they would want to, but they didn't. Our hospital is one that typically doesn't unless the child is really uncooperative or they find something that would require a longer echo and the child is out of patience. Took about 15 minutes and Aubrey did wonderful and spent the whole time playing with a piece of paper and taking a few peeks at an Elmo video. Any longer and she might have had it with the tech, but he has a little boy a bit older than Aubrey and so had the "father patience" turned on.

The echo showed that her pulmonary hypertension is gone completely!!! She still has a very minor leak on the left, but even that is improved from her last visit. I asked about the leak being chronic and whether she would always be on meds. Generic Answer: "Every kid is different!" Love that one...dig a little deeper and I got this: With an AV Canal defect and valve repair it is very normal to have some leakage always. The medicine helps and surprisingly Aubrey has shown some improvement. In the future, maybe next visit (6 months) we would try to take her off of her medication. If she is able to remain unchanged without it, they would drop it. If not, she would stay on. I was satisfied. Aubrey likes the taste, so it isn't a big deal to dispense it. Good to know that the issue will be revisited and we might be able to get rid of it.

In some ways, that little bit of meds each morning and night, feel like the only constant reminder of her heart defect and her Ds. Other than that, we really are feeling very "normal" and healthy and just like every other kid out there. We are so blessed that her recovery has been so quick and that she continues to improve still. We thank the Lord daily for the wonderful little girl that he has given us.

Therapy

Speech Therapy:

Melissa was here this morning and we had a good long talk about the cups. After my post the other day, I began to wonder about all the different cups we were using and all the different things we were trying and was worried that in all our trials, we were just confusing her. Melissa agreed that that might be happening. So we started over. What is our goal? To wean her to a cup or to continue breastfeeding? Breastfeeding! So with that in mind, we made our first decision. Since I will provide her with all her fluids, we will only try a straw cup since that is the goal that we have now set. We will only try water, since that is what she seems to like. One cup, one liquid...stick with it and see where it goes.

We are also working on signing some simple words. "All done" "Eat" "More" and a few others if I think of it, but mostly at the table is when we use them. She hasn't shown interest in them at all, but this week she did her first sign. "Prayer". We sat down to dinner and I usually hold her hands as everyone prays, but the girls started saying the prayer before I folded her hands and she just slapped them together all by herself! She does it all by herself now as soon as she hears them start to say it! We are so proud.

Occupational and Developmental Therapy:

Both were here last week, but will alternate weeks from now on. They work on many of the same things with Aubrey right now, except OT works more on the gross motor items and DT works more on the fine motor things. We are continuing work on her crawl...it is a slow process, but she is making progress. When I hold her, I am trying to keep her knees tucked up in a cuddle/crawl possition so that she is used to it when she is on the floor. When on the floor in all fours, we rock her back and fourth and sing songs, she likes that. We are also putting a mirror on the floor for her to look at herself. She loves her mirror image and so we are hoping that moving towards her "friend" will help motivate her. She really needs to strengthen her arms so that she is able to lift one arm to move and support her weight with the other. We are also still working on getting in and out of sits...

She is doing really well at standing for longer periods of time. To give you reference, she never...I mean, ever...put her legs down to put weight on them. In July, we started working on this. It was almost a two person job to hold her knees while she stood by something. Three months later, she can stand at her music table for 10 minutes, without any help, before she needs a little break and then right back at it. She is also learning to pull herself up on things. Imagine, the first time she ever pulled herself up to standing without help, was by the bath tub! She only does it by the bathtub! (I just happened to have the camera in the bathroom that first day.)

Swimming:

This kid is a fish...as long as she isn't cold! She takes regular swim lessons once a week, just like her sisters do, only at this point I get in the pool too. She is in a very small class with a little girl who is just her size, so that has been a blessing. They are both at just the same skill level and size, and they love doing things together. They sing songs and rhymes. She is learning to kick her legs and pull with her arms. The kicking is coming along, but the only thing she uses her arms for is to splash! She can swim under water for 7 seconds and loves the high five she gets from Mr. Mike at the end of each swim. She can hold onto the wall for a short amount of time and loves to stand on the steps and play with the swim rings. It may just be coincidence, but we really think that it has helped her physically get stronger and more confident on dry land!

Wordless Wednesday--Third Annual School Halloween Lunch:)

Eyeballs

Monster Smiles

Lady Fingers

Pumpkin Rolls

Tombstone Bones

Tasty Beverage to Wash It All Down

Therapy

From reading other blogs around the country, I have come to appreciate the system that we are blessed with here in North Dallas. I would have thought that most systems were the same, but I guess not. It might also have to do with need for services in the area. Maybe we aren't in a very needy county. Anyway...We got services really quickly after she was born and have never had to wait for services. Kind of a magic wand "You want speech...how soon can we send her out to you!" We have been very blessed.

The beginning...When Aubrey was born a social worker came to see us and let us know that because Aubrey had the Down syndrome diagnosis, she would be sending our information to our ECI (Early Childhood Intervention) who would help with therapy etc. It was so helpful to not have to really think at that point and to just have someone taking care of it for us. I think that Aubrey was only three weeks old when they came out for her initial visit, to see if she "qualified" (which she did because of the Ds) but it was a formality and to see if we were interested in services through them, which we did:)

That first meeting was with our service coordinator, Jessie and an Occupational Therapist, Nicole and a Developmental Therapist, Liz. This was to be OUR team. I say OUR because they aren't really just here for Aubrey, they are here for me and Woody too. They teach US what we are supposed to be doing with and for Aubrey between visits. They are OUR sounding boards when we have questions or concerns.

At the meeting, it was decided that she would also need a speech therapist. Melissa was brought on board. Speech therapists deal with all things oral, so she came to help us with Aubrey's feedings. A reminder that all Aubrey did for her first four months was sleep, so getting her to eat efficiently and gain weight, while sleeping, was tricky!

About a month into services, we also added a nutritionist, Suzanne. She helped us make informed decisions along with our doctors about WHAT to give Aubrey to help her gain weight and grow big and strong.

They do a review at 6 months to make sure that services are going well and to reevaluate frequency and to set goals for the coming 6 months. And once a year, they do "testing" and plot her on the charts and then decided about frequency and goals for the next 6 months.

Here is the run down of when they came:

First 6 months:

OT=every other month

DT= 1x a month

ST=2x a month

N= 2x a month

6 months to 1 year:

OT=1x a month

DT=1x a month

ST=2x a month

N=1x a month

1 year to 18 months:

OT=2x a month

DT=2x a month

ST=2x a month

N=1x a month

More details to come this week...

Differently-Abled Toys

I was impressed the other day, when I got an email from Toys R Us that now has a shopping guide available for differently-abled kids. It is organized by skill. So if you are looking for some fine motor toys, you click on the "fine motor" button. Beyond that you are able to sort by age, gender etc. A lot of the toys that we have from the other girls work just fine for Aubrey in all of her skill areas, but every once in awhile we are looking for something specific for her and it will be a great place to look. Here is the link: http://www.toysrus.com/shop/index.jsp?categoryId=3261680

Another good place for developmental toys especially for Ds babies is "Down syndrome New Mama" blog. She has so thoughtfully put together a list of some great toys for newborns. Here is her link. I'm putting the #3 Oball on Aubrey's Christmas list!

http://downsyndromenewmama.blogspot.com/search/label/toys

Lucy's mom also put together a guide of her favorite toys. Some overlap from list to list, but she has some great ones too.

http://teenytinyhopkins.blogspot.com/2009/10/lucys-toy-guide.html

I'm having troubles getting some of the pictures to load, so here is just a list of Aubrey's favorite toys: (some with pictures--some without--if you have questions about ones without pictures, let me know)

1. Leap Frog Learn and Groove Music Table ( it helps her keep busy while practicing her standing as well as strengthening her arms as she pushes herself away from the table and back again)

2. Peg Board Puzzles (this was one with bigger knobs to get her going, now we are using the small ones to work on her pincer grasp)

3. Pots and Pans and Spoons...need I say more. She loves the noise that she can make!

4. Bumbo ( I have to be totally honest, this thing looks rediculous, but it works so well. She was able to be propped up in it from an early time and it helped her develop the muscles and skills to eventually sit alone. We also used it when we first started giving her solids as a chair)

5. Boppy (we actually have three:) She used this to sleep in especially when she was little or congested or just wanted to be propped up to see what everyone was doing. Then it sat behind her or in front of her when she was learning to sit up.

6. Water mat--this was a mat with water in it that we laid on the floor when she had tummy time. She loved pushing on the water to make the fish inside it move.

7. Lots and lots of texture books. She loves them so much and it is good for her to point and touch all that stuff.

Germaphobic...Need I say More:)

The sign on her carseat says it all doesn't it! (Please wash your hands before touching mine)

So it is once again cold and flu season and I really thought that this year might be different...(sigh).

Last year, because Aubrey was so small (5lbs) and had her heart condition (complete AV Canal) we qualified for the synagis shots to help protect her from RSV. We did that monthly from October thru March. We washed hands constantly. We sanitized everything that might come near Aubrey. There was to be NO kissing Aubrey on the mouth or hands...pretty much hands off if at all possible. We let very few people hold her and stayed home as much as possible. All her therapist came early in the morning so that they wouldn't pick up germs all day and then drop them off at our house later in the day. I was paranoid. They said that any cold/flu would likely land her in the hospital and it could be bad.

So, we come to this year...

She qualifies for the shots again this year, so we went in last week for the first dose of the year. She has had a little cold, and the doctor could hear some wheezing, so we are back to the nebulizer again. While we were there, I asked how paranoid should I be this year. She said, "The same as last year". Me, "even though she had her heart fixed?" Her, "yes, but this year you have the swine flu too!" Me, "wonderful, I love living in a sterile world"!

So we are back to being constant hand washing, even if it is for no reason at all except that we are walking by a bathroom and it has been awhile. There is NO kissing on the hands and mouth of Aubrey. I'm not sure about closing ourselves into the house this year, but will be protecting my little ones and their health with my life. Honestly, it seems like a lot of work to keep everyone healthy, but I think about the alternative of having to manage my family and a baby in the hospital again and THAT I just can't deal with. THAT I don't have time for this year:)

So, stay healthy and have a wonderful week!

Solid Food

Aubrey likes cheerios (what kid doesn't) and puffs and raisins all kids of small finger food. But she is working on her pincer grasp versus the raking motion. So we are putting the finger foods into small bowls and such so that she has to reach in with her little fingers. This is going ok, but she isn't consistently successful yet. Still prefers the "rake it up and stuff it in method". If anyone has some tried and true methods that worked for them, we'll try them, just let us know:)

The other thing that she is working on with food is "bite and chew". Meaning that she would have a bigger piece of something and take a bite from it, chew it up and take another bite. Like eating a piece of pizza. Mind you she has no teeth still, so this is a little tricky. We have tried cutting long thin banana and she just smashes it in her hand. We have tried cheese...same result. We tried hot dog and she turned her nose up in dislike...after a lick that was it for her:) I have been steaming the very tiny, skinny baby carrots and she will do those only if I hold them for her to bite. If I give them to her, she tries to stuff the whole thing in. I have tried a few other things that she seems to be ok with as long as I am holding it, like a waffle or pancake or something.

The only thing she does really well with are veggie straws which I found at our local Sprouts Market or at Costco. She also likes Mum Mums, which I found at Walmart. They are kind of like a long oval rice cake or puff. She bites and chews at least until they are small enough to shove in:)

I don't really know what else to try and with no teeth there isn't much to try. I think that that should be a prerequisite for eating REALLY SOLID food!

So she eats almost anything that I can cut small enough for her to pop in her mouth...peas, cut up green beans, cauliflower, broccoli, tomatoes, black beans, olives, any fruit, pasta, rice, turkey, ham, chicken, any kind of soup, and spaghetti. She is by far my least picky and I'm pretty thankful.

Thank you for all the helpful pointers on help with constipation. We have been using pear juice instead of water to mix in her oatmeal in the morning as well as putting pear chunks into it and she is doing much better. Regular and less firm now:)

Cups...Part Two

Here are all the bottles that we tried with Aubrey, I forgot to upload for that blog.

In order, the disposable ones from the hospital, evenflo, avent, playtex vent aire and a playtex drop in bag one. Basically all the nipples were too big for her mouth except the first two, but her preference was the disposable one from the hospital, which we kept washing and washing and washing:) It is a 2oz bottle and it was rare that we needed more than one!

So cups...

After we had gotten the hang of oatmeal and had moved on to some fruits and veggies, our speech therapist suggested that we start on cups. They would really like her to use a straw cup. Think about how many facial muscles you use when you drink a shake through a straw...now think about what you use to drink out of a regular cup...You use far more muscles with a straw, thus the encouragement to get her to use a straw cup versus training her to use a cup.

So here is the line up...though it feels like we have tried more:)

Avent, the Honey Bear, Nuby sippy like, Nuby straw like, and the nosey cup. We actually use all of them, not with a lot of success, but they all work in their own way. I have tried juice, whole milk, soy milk, chocolate milk, thinned applesauce and yogurt smoothies. She actually does the best with just plain water. Thanks to those who have provided suggestions on what to put in for her.

The avent, we use without the vent, since she can't suck it out, but at it has handles for her to use and if I help her, we can tip it for a quick sip and she does ok.

The hard to find "Honey Bear Cup". We've had this for 6 months and had no success at first. I put it in the cupboard and every once in awhile take it out and give it a try. This last week, I think she was close, but it seems like the straw is still too big around for her, so I am experimenting with smaller, juice box size straws, since I feel like she is close to getting it, we just aren't providing her with the size that would give her success...if that makes sense at all:)

The Nuby cup--part one. I like this one since it has handles again and it is a very soft top. She actually bites it to get the water, but is doing well with this and we use this one the most for her since she actually is having some success. I put it by her when she is eating and she will grab it when she wants a drink. She will hold a handle with one hand and I grab the other and tip it for her. But biting is not the desired outcome, so I have been really trying to use other cups at least once a day too.

Since we had success with the other Nuby, we moved on to the straw like one a couple months ago with not much success. I have tried it and she really does have to suck it like a straw to get anything, which frustrated her at first. The top seems long for her. If it were just a little shorter, I think she would have it. I did seem oatmeal backwash the other day, so she is really trying and seems so close.

I posted the nosey cup pictures of her yesterday. I don't use it often since it doesn't really achieve what they want, but it is nice to have it sometimes, so that I can see how she is drinking and the edge of the cup doesn't get in the way of her little nose.

All the experimenting can be exhasting. It is also hard to feel like she is so close to some success, but that we just can't find exactly what she needs to have success. If anyone has any suggestions, we are always willing to try new things. Sometimes I wonder if all the trial and error is more confusing to her than just sticking with one thing until we get success.

Anyway...part of me isn't sad though, because she is still nursing like a champ and that is great for her muscles...oh and bonding too:). I just have to keep in mind that straws are the next step and keep with it.

Cups...Part One

So, I'm gonna have to hold off on the cup blog one more day. Sorry! Tonight is my last night to sew on some halloween costumes before a party on Saturday, so I have to be down stairs sewing instead of blogging. But to hold you off, here are a couple pictures of Aubrey using her nosey cup.

She does ok with it, but I wouldn't say that she could possibly stay hydrated if that is all she used:)

More tomorrow or Saturday.

Wordless Wednesday

I forgot it was Wordless Wednesday...so cups will be tomorrow!

Solid Food-Try this:)

So after only a couple weeks of nursing, we were on to more new adventures, though I have to admit, I wasn't pushing Aubrey, I was just enjoying the easy life of breastfeeding!

So the first trick was finding a spoon that was small enough. At this point Aubrey was only 8.5 lbs and had such a tiny mouth! Our speech therapist brought the maroon spoon first...too big.

Then she brought the smaller ones...still kind of big.

How about let's try these...textured spoons...small enough, yes, but confusing with the texture. (the idea is to push down and back on their tongues so that you teach them how their tongue should move with food--more on these later.)

The right match ended up being The First Years Take and Toss Spoons that I went and found at Target...and these were just right for her little mouth.

What food...obviously most babies start out with rice cereal, but in case you were wondering, oatmeal baby cereal has more calories and since we were still trying to put on the weight, that is what we tried. Not a lot of success at first. She had a few bites at each try and that was it. I tried biter biscuits etc to see if she wanted to chew on that and she didn't. Once day out of curiosity, I gave her a cheerio. With 3 other kids at the table I was a little distracted mind you, and searched her lap and clothes and everywhere for that cheerio, but it was gone. She had actually eaten it! Once we figured out that she wanted more "solid" food we were in business. I started mixing the oatmeal thicker and we did puffs and bananas and strawberries and avacados and sweet potatoes. She was off and running and never looked back.

We used to alternated between the textured spoon and the Take and Toss spoons each day, so that she would learn with the textured spoon, but also so that she would be able to do it with a regular spoon. Now, we just use the Take and Toss or other regular baby spoons and forks. She eats like a champ and if I can make it small enough, she will eat anything. She LOVES spagetti! (she is only messy, because Daddy fed her this night. I don't let her get too messy, that would mean more clean up for me:)

We have been very fortunate with Aubrey, she rarely spits up ( maybe once a week if she over eats while nursing). Once WE figured out how and what to feed her, she has done so well. It is still hard work and there are so many days, when I wish she could do more self feeding, but she doesn't have teeth yet...and it would be messy:)

Her speech therapist has been extreemly helpful in helping with all her feedings thus far and continues to help us make all the necessary transitions. Right now Aubrey is working on having larger pieces of food that she takes a bite off of and then chews and then goes for another bite as opposed to stuffing everything in her mouth at once! We are trying long steamed carrots and waffle strips. She is doing well if I hold it for her, but if I give it to her, she just tries to shovel it all in!

Tomorrow...CUPS!

The Early Months--Bottles and Breastfeeding

I had successfully breastfed 3 other girls with no problems. I felt like a professional. It should be easy fourth time around...

When Aubrey was born, she went right to the NICU. She was very unstable and so they did a nasal feeding tube during the first day. I can't remember exactly when they took it out, but it wasn't in more than 12-18 hours. After which she was stable enough to try breastfeeding/bottle feeding or being held. I was allowed to try breastfeeding and then they would follow with a formula bottle. She was only 4lbs 13oz to start, and they didn't want her to loose too much weight.

It was hard to be so far from her in those early days, when I should have been laying with her on my chest (skin to skin) and feeding her when she wanted. But they have a strict schedule down there, so I went with it and would come a little early for feeds to spend time skin to skin before we tried breastfeeding. It was hard. We tried lots of positions, keeping her wrapped up or not wrapped, tickling her feet etc. We had some success, but not enough that they would let the bottles go. Her jaundice was bad, so they did light treatment and they also put her in an isolate. She was the only girl with 6 boys in the NICU and they weren't quiet guys either. They figured that she would be able to rest better in a quiet cube!

After almost a week there, we came home with formula, bottles and pumps. I knew that it was the best thing for her immune system and I wan't so badly to nurse her, so I stuck with it. We did formula added to breast milk to make it high calorie. I think that we started at 22 calorie and ended up around 26 calorie. She basically slept through life at that point, so for her to even try breastfeeding just plain wore her out, so I only tried about twice a week to keep her interested in it and hoped for the best. Though, everything I read and heard said that most babies with Down syndrome can't nurse well, but I committed to the difficult task of pumping until surgery, when I hoped she could start nursing. I had to have hope for that.

So every three hours I would feed her. It took almost 1/2 hour to get her to drink an ounce, then get her back to bed and pump. Feed myself, feed everyone else, maybe shower and get dressed or run an errand or go to a doctor appointment or pick kids up and start all over again, every three hours, all day, every day, for 4 months. It makes me tired just to think about it all again. But she needed it and I needed to do that for her.

It was so foreign to me...the bottle thing. Measuring every cc that she started with, measuring and adding formula (and MCT oil at the end), heat the bottle to just the right temperature, feed her, record what she ate, if she spit up and how much. I dreamt of the easy days, when I would just sit and feed my baby and just know that she was growing.

Surgery came and went and I still pumped at the hospital, though I had given up pumping at night. We weren't getting enough sleep to function during the day. A week after surgery they cleared her to start with an ounce of pedialite for a day, if that went well she could try breast milk. It went well and I was so eager to hold her and try nursing her. She sucked those bottles down so fast. I thought that feeding her would be easy, given the chance. But...her body was having troubles metabolizing the fats in milk, so no more breast milk, but some other stuff instead. I won't call it milk, since the first ingredient was corn syrup solids (40% of it), but that was protocall. We fought it, but that was the option. At least until her body recovered, which was about 3 weeks total.

We finally got her home and were doing every other bottle with portagen and breast milk and then just breast milk. I decided that it was time. We took a long weekend, when we were both home, to just work at it. I should have known then that she was going to be a funny girl!

She wouldn't latch on anymore and I was just desperate, so a lactation consultant at the hospital suggested a nipple shield and provided one for me to try. I had some success getting her to nurse with it. I would always try without for a few minutes first and then go with it and then when I switched sides, I would try without again. To be honest, she did ok with the shield and I was committed to using it as long as she nursed! But I wasn't going to give up, so I tried different things and finally got her to nurse from me if I held a bottle near her, let her put her hand on it and then she was fine! Imagine that, she just wanted to have the bottle near her to hold like a security blanket while she fed! A day of that and then I was able to just enjoy feeding my baby girl. She had her last bottle on my birthday:) It will probably be my best birthday every!

That was back in February. She did spill a lot in the beginning, but with some work, she got it and she nurses just as well as my other girls did.

Lactation consultants are super supportive and have many suggestions and supplies to help get you there. I had a super supportive husband, who helped in any way that he could (he was the fake bottle holder for a day:) Aubrey's nutritionist ( who has come since she was 1 month old) also encouraged me to keep pumping for her and to really keep at trying to breastfeed. Aubrey's speech therapist (coming since birth) was supportive in my quest as well. She did a lot of help getting her to latch on and feed correctly.

I feel lucky, that WE were able to accomplish this goal together and our bond has become so strong over these last few months. And did I mention that life is so much easier with "milk supply" always ready. No more supplies and equipment to carry everywhere, just mom and baby enjoying life.

Be encouraged that it can happen after 5 1/2 months of bottles. Do not be discouraged. Surround yourself with support. Babies with Down syndrome can and do nurse just as well as others. I know that that is not the case for all of them, but for us, it has been and it can be for you and your babies as well.

All Things Fall and Texas!

It is fall here in Texas and that means several things...

Football with Daddy on Sundays

The Red River Rivalry--

Texas Longhorns/OU Sooners weekend.

Texas won 16 to 13. It's a big deal around here!

Cold and Flu Season:(

Long Sleeves and Jeans!

Sign from Texas State Fair. Only in Texas are we proud of this and only in Texas do we post signs about it!!!

Going to the farm at the fair.

(Alice 7 and Kate 5)

(Ella 3)

At the fair. It was cold that day. By the way, I am getting used to having socks and shoes on, but I do not like hats!

Hope that you are enjoying fall weekends wherever you are too.

We are more alike than different...

One of the things that I love about my 3 older girls is they see Aubrey...their little sister...a member of our family...a baby. When Aubrey was born, we told them that she had Down syndrome and we read a book called "We will paint the octopus red". http://www.amazon.com/Well-Paint-Octopus-Stephanie-Stuve-Bodeen/dp/1890627062

We explained that she would learn in different ways and need extra help, but that she would be able to do all kinds of things, just like them. That was the last time we really talked about it. It apparently is no big deal to them:) She is simply their little sister and they love her. Some day this may change as they become more aware of her differences, but for now, I will cherish the beauty that the eyes of children have.

When she was born and her diagnosis was confirmed, I was sad. I was sad, because I had dreamed of what my little girl was going to be like and what she would do. She would be over 7lbs, she would be bald and have just a little bit of peach fuzz for the next 2 years! She would crawl around 8 months, she would walk around 1 and life would be simple. She would go to school, and learn to drive a car and play sports and go to college and move out and fall in love and get married and have grandbabies!!! We all dream of these things for our children, and I was sad, because I didn't know what things on those lists she would be able to accomplish. I had to mourn the dream that had died...and then what I was left with was this beautiful little girl that was so full of possibilities and surprises.

Some days, I feel like it is Christmas! Around every corner, she has a new trick or surprise for us and we are enjoying her so much more without the guide map that I had laid out for her. She holds the pencil for the map and we just have to wait and see what life holds for her.

As we have been educating ourselves this past year, I realized that yes she will be able to do most of things that I had dreamed she would...just not in the same way or time frame. She will learn to crawl and walk and she'll go to school and make friends. She may even drive a car (I found someone who did!) and get married etc. She is more like my other children than she is different.

I've seen this clip on several other websites, but thought that those who follow my blog and aren't as big a part of the Down syndrome community would enjoy it. It comes from the National Down Syndrome Congress Center website.

http://www.ndsccenter.org/morealike/flash/

Statistics!

So every month Aubrey has a nutritionist come as part of her services with ECI. (Early Childhood Intervention) She tracks her height, weight, head measurement, and also what she is eating and what we should be working towards, as well as any problems.

I am happy to report that after 13 months...she is finally on the charts! For those who are new to our site, yes we are using the Ds height and weight charts. After about 9 months, they gave up on measuring her on the chart and concentrated more on whether she was proportional with height and weight, and she always has been, and whether she was staying on a curve of growth. The last two months though she has done more weight gain and less height gain, which put her in the 10% for both.

She is now 13lbs 15oz (a 10oz gain)

She is now 25.5 inches (a .5 inch gain)

Can't remember head right now, but also proportional and on the charts.

She has had some past trouble with any dairy products, so we are going to keep up with trying bits here and there. She seems fine when it is in something, but has mild reactions when it is served alone (example, some cheese=vomiting). We are also going to try vanilla soy milk to encourage drinking out of a straw. She is also having troubles with bowel movements being firm and hard to pass, so the soy should help and we are going to be very limiting with dairy. She also suggested that we do more pears. I will put pear chunks in her oatmeal and mix it with pear juice instead of water.

I will be writing more on feeding this weekend or next week. Sometimes I feel like a scientist with all the trials and experiments that go along with feeding Aubrey:)

Also, she has her first cold of the season and she is absolutely miserable. Not even interested in opening her Halloween presents from Gramma and Grandad. And she loves tissue paper. Will keep you updated on her cold. Although the napping will give me more time to work on my 4 fairy costumes!

Thursday...misplaced?

So I'm new to this blogging thing and haven't exactly figured everything out:)

I was wondering what happened to my post today, when I came to my site and apparently it is in between Monday and Tuesday's post. I have no idea, why it is there, but today's blog is there.

It is a wonderfully touching essay. It plays over and over in my head, keeping everything in the right prospective for Aubrey.

Enjoy

Wordless Wednesday

Here is me and my Great Grandma Schaumann who came to visit this past week.

What can I do...How can I help

I'm thinking back over the last year and thinking about all the times that people have asked "What can I do? How can I help? Is there anything you need?"...and at first we didn't know what to say. We didn't know what we were in for and what we needed. If you have just gotten a diagnosis and are just overwhelmed with life right now, this may help. If you are a friend of a friend of a friend, or just know someone who is ill and don't know what to do and they can't find the words to tell you what they need...maybe this will help.

What can you do?

Pray: We needed lots of them. Aubrey came home from a week in the NICU at 4lbs. 10oz. and needed to weigh 10lbs for surgery. I would have to look back at my book, but it took almost a month to gain 6 oz! We needed prayers for weight. (we didn't make it to 10 until 4 months after surgery--she's a slow grower:) Prayers for continued health. (we were able to keep her completely healthy until two weeks before surgery:) We needed restful sleep when we could get it and we needed to stay healthy to take care of all the day to day stuff. We needed prayers for strength to get through this. We still do tell people to pray for us, but it is different now. In those early months, we felt like we needed more. Now, we feel like we have most things under control, but it never helps to have people praying for sanity and good doctor visits and things like that:)

Food: I used to be the one who cooked meals and took them places for people when they had babies or were sick. I appreciated the fact that someone just organized meals for us. We were so tired, we couldn't think straight! It was so helpful to have a good warm meal on the table every night and I didn't have to worry about it. If you know my husband and how he eats, then you know it was such a relief to not have to worry about feeding him! They planned meals for about a month after we brought Aubrey home and then again after we brought her home from surgery for about two weeks. Looking back, I don't know if I told people how wonderful it was, but I am trying to pay it forward now.

Donate Blood: Aubrey had several transfusions during surgery and platelets etc. after surgery. Donate. Donate. Donate. We relied on the kindness of strangers donating blood to help get our little girl through surgery and recovery. To all those out there, who give regularly, Thank You.

Babysit: We have three other girls besides Aubrey and only one was in school last year. It was so helpful to have people offer to watch the girls for doctor appointments. I don't know if I would have been able to focus on what they were saying if I had two or three other kids in the room with me! People were kind enough to say, "I am available on Tuesday, Thursday and Friday and I WILL TAKE YOUR KIDS for that appointment!" If the offers were open ended it was hard to call them up and ask for favors. But they made it easy.

Tell them how cute their baby is! So much of this past year has been about her heart and on going health. And yes it was a big part of her day to day life, but she was our beautiful little girl too. It was nice to just talk about how wonderful she was and the wonderful things she was doing versus all the medical stuff all the time.

Just be there. Sometimes there just wasn't anything to do or say, but just knowing that we had people to support us was wonderful or a smile to give us a boost or a hug to give us a little lift. Sometimes the things that people thought were so little meant the most to us.

We truly appreciate all the help and support that we continue to get. You have have been a necessary part of our lives and we love you.

My Two Daughters

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

Let it go....

So I came up with this title, because it is a lesson (hard one) that I have had to learn over the last year...since Aubrey was born. My husband has been saying it for years, but I have had to finally listen and prioritize our lives. Some things you just gotta let go...

For example:

Ironing: We have company this week and it has been awhile since the guest sheets were out and as I was putting them on the bed, I thought, "I should really iron these sheets...or in the very least the pillow cases." In the past, I would have run down to do this in a heart beat, but I went back and forth with "it will only take 5 minutes", or "I could spend that 5 minutes playing with Aubrey instead of letting her watch me make the beds and iron". So I didn't iron anything. Still thinking about it...but I let it go...

Pajama Day: The kids loved this one. About once a week, especially in the summer when everyone is out of school, we would have a designated day where no one got out of their jammies all day and we took baths and put new ones on before a movie and bed! It was the best. Now days, we just have too many things going on. School pick up and drop of, appointments errands, and the list goes on. Therapy is a big one, since they come early...8:00am. There were many times, before surgery, that we didn't get out of our jammies before they came and I just had to be ok with that because we just couldn't do it. Now, I don't accept that and we are dressed for all therapy sessions! But every once in awhile a Saturday comes along when we have nothing on the calendar and there isn't any yard work and we can all stay in our jammies all day long....Until the next one though, I got dressed this morning...and let it go...

Chores: 9 months before Aubrey was born we had a house on the market and were buying a new one. Our house was on the market for 6 months and so every morning the beds were made, the dishes were done, the bathrooms cleaned, floors vacuumed...everything had it's place. Not the case anymore. Most of the time we are living in C.H.A.O.S. (can't have anyone over syndrome)! The laundry is never all done and put away, the dishes are rarely all done at the end of the day, etc, etc, etc....I have let it go...

What I have learned is that there is always going to be "stuff" to do or "stuff" that we miss out on, but what is important is that we are all as happy and healthy as can be. I came across a blog today that was titled "We may not have it all together, but together we have it all!" That pretty much says it for us. We aren't always organized or cleaned up or have had a relaxing day, but we have each other and our love and that is most important.

I sometimes wonder if this is just something that would have been with any fourth child...or is it only a lesson I got to learn because we are busier with Aubrey and her Down syndrome etc?

So give yourself a break today...let something go...play with your kids. It is way more important.

Buddy Walks

I am including a post about Buddy Walks, so that those who are not familiar with them, can become informed. I have to admit that we were not really up on the information until this summer when I started to really read blogs out there. When everyone started writing about them in September, I assumed that we had missed out on the Dallas Walk. However, after looking it up it is in November, when it is much cooler and more enjoyable to walk outside:) We are busy that weekend, but really want to take part next year in the walk to help promote awareness and to help with programs that help those with Down syndrome and so much more. Here is a bit about Buddy Walks. I will also include a link from the spokesman. This year it is John McGinley and his son Max. You might recognize him from TV. He plays Dr. Cox on the show Scrubs.

http://www.buddywalk.org/index.cfm/fuseaction/aboutthewalks.contentItem/contentID/c36a4602-de3a-4f87-b39f-adb579d070a8

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 fourteen years, the Buddy Walk^® program has grown from 17 walks to more than 280 expected in 2009 across the country and around the world. Last year alone, 250,000 people participated in a Buddy Walk^®! They raised $10.5 million to benefit national education, research and advocacy initiatives, as well as local programs. These funds enable NDSS and local groups to offer services that support and enhance the quality of life for individuals with Down syndrome and their families.

The Buddy Walk^® is a one-mile walk in which anyone can participate without special training. It is a wonderful, heart-warming 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!

I Did It

Today is a link to a friends website and the shirt and slogan that came about after a trip to Seattle.

It is such a short phrase that has so much meaning behind it. We are so proud of all the things that Aubrey does, in part, because we know that she works so hard to reach them and hopefully soon, she will have the t-shirt to prove it.

http://trisacharm.blogspot.com/2009/08/i-did-it.html

Play Time

I think that one of the best things for Aubrey is playing with her big sisters! She may be small, but she is finally big enough to play with and enjoy. She really looks up to them and quietly takes it all in! Sometimes you can even see the wheels turning as she watches them and is catching on to what they are doing:)

Her and Ella (3) are best friends and they each look for the other first thing in the morning. I love to see them together. Aubrey loves to hug and kiss Ella and Ella loves to squeeze her!

Seeing Love

Day 8 of "31 for 21". This really is a challenge, but as long as I get it in before midnight, I've still done it for the day...right:)

We are your typical family raising four girls. We struggle to get two out of bed, dressed, fed and off to school on time along with Dad. And then I move on to the next two, feeding, dressing, and getting ready for the day. We run errands. We shop. We play at the park and with friends. We go on vacation. We celebrate. We do it all just like everyone else. We are busy...just like everyone else:)

When Aubrey was first born (September 9, 2009), I did think about the Down syndrome part of her a lot. It was new to us and we didn't know much about it. It changed the visions of how we thought her life would go and so we did think about it when we looked at her. Now, when I look at her, I see her crazy brown hair and big eyes...I see over the top, unconditional, all consuming love for MY littlest girl. I don't look for the markers or signs of what I know is there. I just see the big girl that she is becoming and all the things that she is doing.

I can only assume that others, strangers, see it to when we are out and she flashes them her big smile, but I don't say anything unless they ask. I just introduce her as my Aubrey, the youngest of four girls. I think people are more in awe over the four girl thing, than they are about the Down syndrome! We aren't afraid to talk about that part of her, but it is such a small part of who she is, that I don't feel like I have to add it as an addition to her name, "This is my daughter Aubrey; she has Down syndrome."

We love her, just as much as our other girls. And when I look into their eyes, I see love too.