Down Syndrome in Real Life

World Down Syndrome Day 2011

2011-03-20T22:02:00.000-07:00

3-21-2011
For 3 copies of the 21st chromosome, unique to Down syndrome. In my opinion, creating some of the cutest of the cute out there. Don’t miss the video below.

World Down Syndrome Day.

Take the chance to tell someone a wonderful thing about someone you know with DS. Or share with someone how your views have changed now that you know and love someone with DS. If Braska is the only person with DS that you know, be sure to brag on her a bit today. I don’t mind at all! Feel free to link to the recent post about how far she has come since her heart surgery 4 years ago.

Today, make a decision to be intentional about making others aware that a diagnosis of DS does not have to be met with utter despair, it doesn’t have to be a death sentence, and it is not a reason to take an unborn child’s life.

Just tell someone.

The IDSC for Life has put together a really nice video of some of our little beauties… I have my favorite in there, and a few who follow close behind her. Maybe posting a link to this in your Facebook status or on your blog or Twitter would be a great awareness opportunity.

Stringing letters [Down syndrome, fine motor skills, OT]

2011-03-18T07:01:00.000-07:00

My teachers at school are just the best. I like all of them so much. And it’s so much fun to see what new things we’re going to do everyday.

Miss J had a fun new thing for me to try a few weeks ago. They are LETTERS! My favorite thing in the world! Miss J helps me learn how to use my hands better and make them stronger, which is really hard for me. But these fun new letters are so great I don’t even mind doing them for practice.

Then the coolest thing happened…. I got home and there were MORE letter beads, just like my ones at school! It was like magic! Somebody special loves me a whole lot, I think!

KiKi plays with them too, but they are my special toy to practice with. The first day we had them at home, Mommy let me play with them some after KiKi went to nap. Here’s a little movie for you to see… check out my skills!

Make an on-line slideshow at www.OneTrueMedia.com

Mommy note: Neat things to note in this clip…
~~Fine motor is a VERY difficult thing for Braska. She has only been in regular fine motor focused therapy for about a year, because prior to that most of her OT time was focused on feeding. It is one of the areas that she shows the most delay. But we’re not bothered by that. She’s doing great! She now has two OTs at school (the best two, in my opinion!), one for feeding and one for fine motor. (They are a GREAT team and overlap a lot in each area.)
~~ Suddenly every letter was her “fav’rit”. As in, “Oh, the letter U, my fav’rit!”
~~Most of the letters you will hear her say “makes the ___ sound.” This is something we’re working on, mostly because Kinlee is obsessed with what everything starts with and what sound all the letters make.
~~You’ll notice phrases “I better go get it” and “I do it again” and others.

Mommy life: Heart Day--Celebrating 4 years!

2011-02-28T18:26:00.001-08:00

Four years ago today, I handed my girl to a team of people. Basically strangers. Their plan was to cut her perfect skin, crack her sternum, stop her heart, poke, stitch, and patch, and then bring her all back together again.

And I still let them have her. Amazing.

Though not without lots of prayers in the moments before…

See that tiny girl up there? 3 months and 1 week old. About 11 pounds and 20 inches, at the very most. Her life to this point had been largely sleeping and watching the world go by, punctuated by lots of doctor appointments. And now we were going to introduce her to “real life” in this way?

(If you haven’t read through the story as it happened, you can go here and find links to all the posts about the experience. There are videos, pictures, and more details about how it all went.)

I often call Braska my little SuperStar. She amazes me every day. She has already, in just over 4 years, totally surpassed all the expectations that I had in those first few days of how life would be. They were grossly unreasonable and borne out of fear and the unknown. But the beauty of that place of beginning is that every single solitary day brings celebrations, success, and progress, even when we feel like we’re sliding backwards at times.

So here’s to my girl, my little cheerleader, the sweetest light to brighten my day. That precious heart that was messed with and cut on and brought to a halt four years ago now beats with the truest sense of love and real life.

She’s still tiny. But she is healthy and her heart has been deemed, “Perfect.” Over and over again, each time they look at it. Life is still a long road ahead and a lot of it will be uphill. But if you want to know what her outlook on anything is…just look at her and say, “Hip, hip…” and she will be more than happy to add her daily mantra… “Hooray!!!”

We will be forever grateful to the team who repaired her heart and to our God who held it while they worked.

And how else should a girl celebrate a healthy heart on her 4th Heart Day?? Wrestling with Daddy and Sister at the end of a day full of fun.

Live on, little one. You’re showing the rest of us how it should be done.

Mommy life: A peek at the future

2011-02-10T20:31:00.001-08:00

Maybe it’s because music is part of my core nature, maybe it’s because I have a daughter with Down syndrome, or maybe it’s because it’s just an inspiring story. No matter why it caught my attention, I’m glad it did. (Thanks Ria for posting!)

It’s really short…take a look. I just LOVE seeing girls about this age who are just living life. Who knows where Braska will be and what she’ll want to do, but it’s fun to think about her in an opportunity like this.

(video embedded below)

I couldn’t quit focusing on her speech and articulation… so good.

Now if only we could commute to that class once a week…

Merry Christmas from the silly sisters!

2010-12-23T12:24:00.001-08:00

A good day to be 4

2010-11-21T18:52:00.001-08:00

I had a great day. It was really busy and there’s lots of pictures to show you, but I’m gonna go to bed and get some rest!

Happy birthday to me!

She’s Dashlyn Now! [Down syndrome, international adoption, Reece’s Rainbow]

2010-11-13T07:48:00.001-08:00

Remember how we have been waiting for Jack’s new little sister to come home? Well she’s not home yet, but very soon! Miss Julie and Mr. Allan got to go over to where she lives and meet her, and the people there said she is all theirs now! So her real name is Dashlyn now! Isn’t that exciting?!?

Isn’t she just the prettiest little poonchin!?!

She’s gonna be my new BFF, and I can’t wait until she can come play at my house. Mommy says she is gonna be part of my Christmas present this year, and I think that is the best present ever! I’m gonna show her how to do her hair pretty with bows and how to say funny things and how to wear the cutest little outfits and how to walk like a big girl. I know about that stuff, you know. We’re going to have SO much fun!

Go over to her blog and see lots more pictures and read the stories about her playtimes with her new mommy and daddy.

Dress up party

2010-10-30T19:49:00.001-07:00

Today we went to PaPaw’s church for a dress up party. There were lots of people there all dressed up in funny clothes. Me and KiKi wore our bug dresses, and everyone thought we were super cute!

KiKi doesn’t like people who are dressed up a whole bunch, like where you can’t see their faces or when it looks like somebody on TV or something. So she stayed close with Mommy most of the time.

I walked around by myself for a while because I’m not scared of the dressed up people.

There was a great big bouncy house for the kids, and I wanted to get in. I don’t really jump much but I like to sit and let the other kids bounce me.

And I said Hi to Daddy through the strings.

And I slid down the big tall slide REALLY fast and fell over at the end.

I wanted to go do more, but there was a bunch of big kids in there and I was too small to play with them. They were bouncing a lot bigger than I could do.

So I went and found a little seat to rest in. It was close by Miss Cheryl and PaPaw’s cars, so I just rested with the beads a nice lady gave to me.

But KiKi had to come over too. She likes to do whatever I do.

She wanted to go in the bouncy house, but she wouldn’t have liked everyone yelling and running over her. So she just watched outside.

Soon it was time to go back to our church, and we were tired of the sun in our eyes.

KiKi even took her hat off. And if you don’t do the dress up, you can’t stay at the dress up party. So we said bye bye to everyone and we left.

Tomorrow night we get to do ANOTHER dress up party! I can’t wait!

31 for 21: Education without alienation [Down syndrome, person first language]

2010-10-28T21:29:00.000-07:00

I have had the privilege of getting to know some super nifty blogger buddies “in real life” (IRL if you’re a fan of the acronyms, which I am) versus just communicating through blogs and comments shared. I could list a whole bunch of them, but for today’s purposes, I’ll highlight one of my faves.

Most of you are very familiar with Courtney, Justin, LC, and Jace and their ever-entertaining stories written in the dry, witty style that Courtney employs with ease. (And for what it’s worth, it’s not a show for the blog. That’s how she talks. It’s great.)

I’ve been blessed to be able to get to know them better since they come over here to St. Louis Children’s for a chunk of specialists for the squibs. We’ve done dinners out, visits at our house, and I’ve been able to provide some tiny distraction from the fun of hospital stays when they’ve been here for a few days at a time. Trust me, I am always the one who walks away more excited and blessed by the interaction.

I’m still a tad starstruck, I admit it. These two and their tots are really just a tad more snappy than most people, and the niceness is icing on the cake.

Anyway, this isn’t supposed to be all about my gushing affection for “ch” and her gang. It’s about a conversation that we had last time I visited in the hospital, last month. Most of the conversation was of a personal nature, and as usual, Courtney offered superb perspective and some good food for thought. But the other part of the conversation was about a topic we all discuss occasionally, it seems.

When do we correct people for referring to our “Down’s babies” or “Down syndrome kids”? Or do we?

There’s lots of talk about person-first language, and I’m good with that. (I blogged a bit about it here.)I’m not opposed to speaking in a respectful manner, of course, but sometimes pushing the point can alienate those who are just trying to interact with us or our kids. And alienating them does NOT provide opportunities for education about why you might feel it’s important to phrase things a certain way.

Courtney has done a great blog post that encompasses much of what we discussed that evening at the hospital. She had great things to say then, and she’s sharing them here. (Because I know a few of you read with your school-age kids, there is one PG-13 word used in a reference example. But don’t skip the article for that. It’s very worth the easy mini-edit.)

My favorite section is this…

And, in stopping you and correcting you I've established that you have to tiptoe in your references to my children. I've implied that speaking of my children requires delicacy and careful treading. I've implied that my children are different than most children you could easily and naturally speak about.

The bottom line is this for me…I’m not going to demand that strangers get educated and know the current PC way to say things JUST to interact with me or my children. I am happy to be part of that education, but it takes a warm response and welcoming attitude to allow that to happen. And as for caregivers and medical people, yes, they should know what’s considered “acceptable” but I’m still not going to pull an attitude that MY kid has to be treated with special (ahem) care in how you just talk about them in regular conversation. If the opportunity to educate in a nice manner presents itself, then sure, I share the info with them. But I am not going to walk around with what amounts to a chip on my shoulder just waiting for someone to have the gall to speak to or about my child and use their words in the wrong order.

As Courtney says, it’s gray and sticky territory. I will probably always be in the minority on this in the DS community. (OR is it “community of those who have or love someone with Down syndrome.” Seriously?) That’s ok with me. I’m fine with being on the fringe.

I just really feel like we have to watch our interactions with people and make sure that the education is happening WITHOUT the alienation taking place first and voiding the educating possibilities.

The grouchy kid.
The sick kid.
The pretty girl.
The rowdy boy.
The silly girl.
The hyper child.
The smart kid.
The happy baby.
The colicky baby.
The picky eater.
The whiny kid.
The helpful child.
The birthday girl.
The football guys.
The ballet girls.

It’s a natural part of our language to have the descriptor in front of the noun. It doesn’t mean that what we have used to describe them is the ONLY element of their being. It’s just what pertains at that moment. I don’t think it’s fair to expect people who do not have the perspective we do to *just know* that in our particular situation it’s “not ok” to use the order they are used to.

Yes, it’s ok to educate, just don’t alienate and further isolate our community in doing so.

31 for 21: 2 meals 1 day. Very good.

2010-10-27T20:38:00.001-07:00

Braska took two of her meals today orally.

What’s up? You’re just sitting there looking at the screen like nothing’s happening here. Let’s try this again…

Ahem.

Braska took two of her meals today orally! Do you get that??

She consumed, by spoon and via her mouth, enough food to count for a meal. Twice. In one day.

This is HUGE!

Has she done it before? Yes.
Can she do it regularly? Probably. If Mommy will get in gear and do it right.
Is this a normal occurrence? Nope. Not at all.

Braska CAN eat enough calories to be “a meal” if given the right combination of circumstances. The elements are not often aligned to make that happen. Liquids are another story, but she did take almost an ounce over about 25 minutes of feeding time and 12 to 15 sips.

The news is big. But it’s really largely because Mommy ~~set aside~~ made the time to do it. That’s big.

I rely on the tube because it’s no hassle, no mess, super fast, and it gets the job done. Those are all things I like in just about every part of life. But I know that we have to make room in the schedule to help her get used to taking in real (though pureed) food and drink. A meal in this scenario takes about 40 to 50 minutes total. That’s a lot of time to set aside and be available to sit and wait. Assist here and there. Feed manually for a while. Allow breaks to happen. And go again when she gives the cue.

I have to reign in my disciplinarian self when she pushes the food away. I have to give her time after she refuses to take a drink for the 8th time. I have to try NOT to speak too firmly to her when she swings at the spoon as it comes. I’m learning from the pros that this isn’t the time for confrontation. I need to make it a good experience. So much thought. Just to eat. (And we’re not even CHEWING yet!)

All that to consume about 6 ounces of pureed food. Tonight it was pork roast with veggies. She really likes that one. Followed with a chaser of yogurt, always a hit.

I need to get this. I need to make this a priority. I need to slow down, even more than the “slow down” I’ve done in the past few weeks schedule-wise, and really give her the opportunity to do it.

But goodness… If you ever need to be shown just how impatient you are, and I am in no way delusional about my impatience, just try to feed a severely averse child who could NOT care less about food.

We’ll get there. But I may not make it with my sanity intact. Lord willing, I can hang on!

31 for 21: Speaking for awareness [Down syndrome, local support group, Kiwanis]

2010-10-23T18:52:00.001-07:00

Thursday I had the privilege of speaking for the O’Fallon Kiwanis Club at their lunch meeting. I was asked to speak to them about what our county’s community group (StC) of our metro DS association (DSAGSL) does, as well as sharing our family story. It was great timing with DS Awareness Month upon us, of course.

I was honored to be asked, even though the president of the club—who did the inviting—happens to be a certain female sibling of mine. And it doesn’t hurt that I have a brother in the club as well. This kind of nepotism can be a good thing.

So I prepared a speech, made up a collage (above) VERY quickly in the middle of the night before (because apparently I didn’t plan to do a handout until the last minute), and after beefing up my confidence with an amazing Bible study lesson Thursday morning, Braska and I headed to the restaurant. '

Yes, I took my own personal visual aid.

I had also asked the interim executive director of the DSAGSL to come, to give some credence to the presentation and to class up the whole thing. I’d not had the pleasure of meeting Amy prior to this, but I’d heard great things from several people. And for her to take on this transition time that’s happening lately, that is not for the faint of heart. She did not disappoint! I’m definitely a fan.

The presentation went well, the Kiwanis asked good questions and were wonderfully gracious and friendly. I was a little nervous at the beginning, but I felt comfortable as I got into my little speech.

Of course I went the route of writing my entire little speech out instead of just doing outline, so as not to let myself start rambling and get distracted from what I wanted to say.

Overall, I was pleased, especially since it was the first such speaking situation in quite a few years for me. But it was a great one to encourage me to get back into practice. I enjoyed the whole meeting quite a bit. And afterward, Amy and I were able to chat a while, which was really nice.

Braska was a champ, napping for a bit on her auntie and then her uncle, but she charmed just as I knew she would. She even shook hands with a few people, saying, “Nice to meet you.” I knew that fun little nicety that we taught her would come in handy.

Here’s a few snippets from my part of the presentation…

There were a lot of difficult periods during those first few weeks. I had a hard time dealing with the combination of postpartum issues, emotional stress that comes with having a new baby in the hospital long term, and trying to learn this new way of life that goes with a diagnosis of Down syndrome and heart defects. There were some supports in place in the hospital as well as in the local Down Syndrome Network of Champaign, which is very active and an excellent resource to parents there. But this journey is one that each family has to figure out and adjust to in their own way.
But don’t think that I’m complaining. Let me tell you a little about my daughter... She has been the easiest child to raise thus far, though I admit just recently she’s decided to have a bit of an independent streak that’s been a little challenging. But that’s actually good to see in her development. Braska is a very sweet, generally happy, little girl who loves her Mommy and Daddy, USUALLY her little sister, and even her dog. She has friends that she loves to play with and asks regularly to go to “Jack’s house” to see her best friend, Jackson. She has the best giggle, and can hug the stress out of me like no one else.
She can walk, talk, play, laugh, color, and say all her numbers as well as count to 20. She can identify all the letters in the alphabet, both in order and randomly by sight or by sign. She has been signing since she was about 9 months old and knows well over 100 signs for words. She knows her shapes, colors, and animals, as well.
Some of the activities that the StC group is hosting in the next few months include a trip to the pumpkin patch for the whole family this coming weekend, our 2^nd annual Mom’s Night Out event at the Painted Pot next month, playgroup dates—both on weekdays and on weekends—for birth through preschool and for ages 5-12. We will be having a family event at Jump 4 Fun, as well as a seminar on how to set up a special needs trust and a workshop on school transitioning, from preschool to kindergarten or elementary to middle school. This is just a sample of what the StC group organizes during the school year.
Integrating into a community of new people while dealing with the changes to our life plan that can happen following a diagnosis of DS can be very overwhelming.
The StC group is truly a blessing. The needs that are met through the DSAGSL and specifically our local StC group are varied, but they are all important.
My passion at this point in my life is to help others through some of the more difficult times of this journey. If I can reassure someone that it’s not as scary as it seems to get this diagnosis, or if I can help a new mother connect with others who know exactly what she’s going through, it is very rewarding. These are some of the goals of our StC group and of the DSA.

Thanks to the Kiwanis for having us. It was a pleasure to get to meet you all and to share our mission with you.

31 for 21: IEP 2010, Part 1 [Down syndrome, disability, IEP, special education]

2010-10-22T14:04:00.001-07:00

Today was IEP day. (Individualized Education Plan—All students involved in special education have one of these.) We moved Braska’s up a little earlier than her birthday in late November because I like it a little closer to the beginning of the school year. It just makes more sense to me to be done with the new team soon after school starts. So this year we’re in late October, next year maybe we’ll hit late September. That’s probably a good time… about 6 weeks into the school year.

Anyway, after a busy day yesterday, which I’ll have to tell you about another day, I tackled the important parts of IEP prep last night.

The baking.

Yes, that’s a very high priority on my list of IEP must-haves. In my opinion, no parent should EVER go to an IEP meeting empty-handed. Taking goodies, be it pastries, muffins, or coffee cake for a morning meeting or M&M’s, cookies, or popcorn for an afternoon meeting, it’s a huge tool in making the meeting less intimidating for all involved. It seems to allow people to let down their guard and work more as a team, as it should be.

I remember last year, when we did our first IEP process at Braska’s 3-year-old transition time, I was shocked to find that we (both Julie and I) were the first to bring food to an IEP meeting at our school. And this is a developmental preschool… with more than half of the students having IEPs!! I couldn’t believe it! In all the talk on forums and blogs and DS message boards, taking brownies or goodies to IEP meetings seemed like the norm. Everyone always said, “Don’t forget the brownies!” when the were discussing someone’s first IEP experience.

So when I entered last year, in our first of two meetings—we did the EDM (eligibility determination meeting) and IEP meetings separately per my request—with my coffee cake, pumpkin bread, orange juice and milk, they were stunned. I cannot tell you how excited these ladies were. It was so funny to see them talking about how they needed to find a reason to have IEP meetings each month for Braska. Julie got a similar response when she had her meetings, just a few weeks before mine. For my second meeting, a couple weeks after the first, I took more baked yummies and also took little bow-tied bundles of cookies for each person to take and enjoy later.

For MONTHS, and that’s not exaggerating, we would see people in the hall one or two times a week who were NOT at our IEP meetings but would say, “I hear you guys do some great baking!” or “Can I be on your IEP team next year? You bring food!” It continues to amaze us how big a deal this was to our therapists, coordinators, and teachers.

I do it because it helps the meeting feel more informal. But I also do it, and I tell them when I’m there, because I appreciate what they are doing for my daughter, that they give their best to teaching and treating her. It’s my way of thanking them, and showing them a small little bit of pampering for a couple hours once a year. That’s doable! And the response is so fun, too. How can you not want to do something nice for people that they tell others about and keep smiling about for months?!? And it takes very little time, effort, or money. Win-Win!

So this morning, I gathered up my muffins—chocolate chip, banana nut, and blueberry—and dropped the girls (and a few muffins, of course) off at Julie’s before the meeting. Truthfully, I practically threw the girls into her house because I was running late! Then I headed to QT to pick up a few donuts, for variety and color, and I also got 4 cups of 3 different kinds of cappuccino to take as well. (Caramel macchiato, French vanilla, and pumpkin spice)

I had the drinks in a cardboard drink holder, but as I turned into the school parking lot, I changed direction too quickly, and the drink holder went right over, with all 4 cups of hot drink. I thought I was going to lose it…but I said—out LOUD, mind you—“This will NOT get to me today!” I parked, picked up the cups, which had about half their contents left in them, and left the rest of the mess in the floor board of the van.

As I walked into the school with my binder under the container of muffins, the donuts on top of the muffins and the drinks on top of the donut box, I passed a school staff member I don’t know. She looked at me and said, “You’re the one! You’re the one who brings food! I heard today was your IEP!” This cracked me up. Before I even got there, members of my team were talking about how they were anticipating what I’d bring. Awesome.

The team was very excited to see all the goodies. The cappuccinos were a HUGE hit, even though there was less than originally planned, and everyone had plenty of yummies while we talked about Braska and her progress.

As I left, there were a few muffins and donuts left over. I went to the classroom of Braska’s teacher last year, Miss N, and dropped off the donut holes and a couple muffins. She’s pregnant, so she needs plenty of things to keep her day happy and her tummy full! (I took her leftover birthday cake last week, since I didn’t trust myself if I kept it at home.) Then I went to the front office and left a couple muffins in the mailbox for our speech therapist from last year. Both these ladies have now become friends, girls I just adore, and it’s fun to leave them a treat since they’re not officially on our team anymore.

So take the time, think ahead just a tad, and take something nice to share with your gang next time you have an IEP. It makes a great impression, and how can helping your child’s caregivers feel appreciated be a bad thing??

Coming soon… the details about the IEP meeting. Amazing!

(Oh, and if you have any questions about any of this IEP stuff, don’t hesitate to ask…)

31 for 21: Beautiful Baby Braska Part 2 [Down syndrome]

2010-10-20T12:39:00.000-07:00

Here’s a few more of the finds from years ago…

Spring 2008. Pretty little bear…

These were taken the same time… I posted the one below here with some thoughts that really are cool to look back on. Now the little girl I thought would be so neat is here, and she IS pretty great.

And the famous announcement shirt… the way her daddy found out about little sister… this was June 2008. She was 18 months old. Just scrumptious!

31 for 21: Beautiful Baby Braska Part 1 [Down syndrome]

2010-10-18T12:36:00.000-07:00

Yesterday I was looking for some pictures on my mother-in-law’s computer, and as I was perusing her uniquely organized files, I came across some great ones. These are all pics that probably were posted long ago on Braska’s blog, but they’re definitely all worth bringing to the front again. I smiled at each and marveled at what a pretty little one she was. That she IS, of course. But her little round baby face was just too cute…

So enjoy this little walk down memory lane.

From the summer 2007, one of my all time faves. Hanging by the pool with Grandma C.

Also from summer 2007, with Uncle Levi. Notice the marks on the side of her face. That was one of our worst experiences with NG tape… she still has a scar from that one. (I wish we’d have ditched that NG a long time before we did!)

From Christmas Day 2007. Just so cuddly, isn’t she? This was the DAY AFTER she got her glasses, and she was LOVING life. She came alive in a whole new way. (Don’t miss the yummy little curvy pinky finger, one of my favorite little traits of hers.)

Just after Christmas 2007, with Uncle Ethon. Those blue eyes of hers are no longer as blue, since they’ve changed a bit over the years. But I love that little face…

More to come in a couple days…

31 for 21: More about eyes [ Down syndrome, glasses, eyes, nystagmus]

2010-10-13T14:06:00.001-07:00

If you missed the previous blip about Braska’s eye appointment, you can start here. This is gonna be a long one, but if you’re have an interest in tots and odd vision issues, this might be, well…interesting.

As I mentioned as a teaser the other day, I had a couple of concerns that caused me to make the appointment we had on Monday. One was the tilting chin-up habit that Braska’s been perfecting for over a year now. Though it has become more persistent and more extreme in the past few months. The other issue is that she has been unable to sit on the couch and remain engaged in her shows. She has been requiring to be closer to the TV than ever before in order to stay tuned in.

She has her yearly ophthalmologist appointment with Dr. C coming up in early December, but I decided these things needed addressing sooner than that. Plus I wanted to make sure that if we needed new glasses, we could get that done with what was left of our flex spending account.

So off we went… Dr. S (optometrist in Dr. C’s office) asked how we were and what was new, and I launched into my info-sharing mode, without overwhelming or sounding fatalistic. A delicate balance, but an important one, as I learned in years of hearing doctors express frustration about the way people present issues back when I was managing practices. I explained how she looks down her nose at everything that required detailed attention. I reminded him that we had addressed this previously with Dr. C and she didn’t feel it was visual, but instead thought it might be a strength issue and recommended we talk to PT about it.

After last year’s appointment, we DID investigate, via a variety of other modalities, the cause of this habit of hers. We talked to the PT, and it was determined after evaluation that this was not purely a core strength issue, but that since Braska does, in fact, have a VERY weak core, we would focus on trying to increase work on that area in order to help her posture and ability to hold her head properly. We also talked to OT who also made adjustments to their exercises and activities to include more things that caused her to focus in various places and at different distances, hoping to help with her visual motor as well.

So neither PT or OT found the issues to be directly in their wheelhouse, so to speak, but they both agreed to assist toward the goal.

I have felt from the beginning that this was more visually related, as in Braska’s vision—her ability to see, not just visual motor. She has nystagmus, which is not uncommon, and looks like her eyes are wiggling back and forth when she’s focusing. This wiggling is much more easily controlled when she is looking down.

For those of you around from WAY back in the day, Braska was totally enamored with her hands for quite some time around 3 to 5 months of age. She was evaluated by a visual therapy specialist and it was found that she was finding her “null point,” or the place where she could make the nystagmus stop and see most clearly. She generally held her hands down by her chest and peered at them for long moments at a time.

What I found when I did my own unprofessional testing recently is that Braska’s nystagmus is once again still when she’s looking down her nose with her chin tipped up high to watch something. When we hold her head in a proper posture position so that she’s looking straight forward at the intended target, her nystagmus is quite obvious and she doesn’t stay focused on the target for long without looking around and then returning to the target.

The other element of this head-tipping situation is that when I held her in the proper position, encouraging her to look straight at the target, she had to raise her eyebrows to get her eyes to open enough to see straight ahead. Like she didn’t have the strength to open her eyes all the way. She CAN open her eyes, don’t misunderstand. But in order to watch one of her videos or follow along with a book for several minutes, she cannot hold her eyes open in that position without looking away, resting by looking down, and then trying again.

These findings brought our OT/feeding therapist to encourage us to have her evaluated by an OT who has specific experience with vestibular and visual motor. We did have this evaluation done, and the OT was great. She found what we’d suspected, that Braska’s low tone (hypotonia, common in DS) is causing her to struggle to work her muscles around her eyes and in her face to USE her eyes as she should. Crazy stuff, I think. This OT recommended specific vestibular therapy and strength exercises focused on the muscles used around her eyes. Unfortunately, our insurance wouldn’t cover these things at that location, so we have to start over again somewhere else and hope we get someone who knows about this sliver of the OT element.

I could go on for days, and it might seem I have, but I’ll sum this part up like this… things that don’t seem right often aren’t. I was convinced that this was not just a quirky behavior or low-tone slouching issue. And as it progressed, I insisted it be investigated. I’m very glad I did. Though we’ve still got some ground to cover to make headway, I’m pleased that professionals are seeing the problem, addressing the underlying issues, and are willing to help us find a plan that will benefit Braska. That’s the primary goal, of course.

Dr. S was very open, understood where we’ve been with this, asked great questions and took lots of notes. He will be reviewing the info with Dr. C and when we see her, and probably him also, in December, we’ll be going with photos and video in hand of Braska in action with the tilting issue, per his request. She did “perform” well for Dr. S on Monday, as he put in a video on the TV in the room and she did just as she usually does. He played with her position a bit—it was Elmo so she didn’t mind—and he tried to hold her head up, manipulate her position, etc. He was able to get a great example of how she lifts her brows, how she cannot stay focused on the show when forced to watch straight on, and how her nystagmus changes with her position.

All this info will be compiled and we’ll come up with a plan soon.

Seemingly uninteresting in the situation was my second concern, that she has to sit so much closer than she used to when watching something. He also did some super special scientific testing on this while she was watching Elmo, rolling her forward in the stroller to see where she engaged. And after dilating her eyes and seeing that her prescription has changed quite a bit, that fit as well.

So we have answers, or at least the right start toward finding the answers. That’s good. I felt great about how the appointment went, and I let him know that.

Now we wait for the new lenses to be done. We evaluate how the updated prescription helps, and we return with new date in December for consultation with Dr C on the situation. I’d like to avoid another surgery, but it’s always a possibility. We’ll hope that we can come up with a non-invasive approach that works.

If you have any questions about this, don’t hesitate to ask… eyes are something we’ve had experience with. She’s had her glasses for almost 3 years! Wow!

Braska: School picture day

2010-10-06T13:40:00.001-07:00

A few weeks ago, it was picture day at school. So we picked out a cute shirt that Grandma C got me in Montana and did my hair with my favorite big bow that my Aunt Karol gave me. We like this shirt because it has tulips, and there’s 3 of them. Tulips are my special flower. I like when they grow in my yard, but for now I have to just have them on my shirt.

I know that I’m supposed to smile when Mommy wants pictures, but sometimes I just wanna get on with going to school!

Then sometimes I just get silly…

Mommy says she hopes the pictures from school were better and I behaved for the lady with the camera there.

Shhhhh…It’s a secret……… maybe I’ll show you soon.

31 for 21: Well DUH mom!

2010-10-06T04:09:00.000-07:00

Last night we were cleaning up the living room, and the panda pillow pet-type thing that lives in the corner was returning to his home. Braska came over to me as I was reattaching his little strap to make the panda appear versus just the pillow.

She said, “Panda bear.”
I said, “That’s right.”

Then I waited a second and remembered something we’re supposed to be working on.

I asked, “Braska, is this a panda bear?”
She said, “Yes.”
I asked, “Is this a horse?”
She replied, “No.”
I asked again, “Is this a panda?”
And she said, “Yes. Panda bear.”

Simple as it may seem, this is a big deal. We’ve been working hard on yes/no preferences for a long time.

You see, usually, if you ask Braska what she wants, she’ll answer with whatever was the last option in the list. And if you ask a yes/no question, it will always be “Yes” or “Yeah.” You can ask her if she wants pizza for dinner, and she’ll say, “Yeah!” But try to offer her pizza and you’re out of luck. She’ll push it away and say, “Nothankyou!”

So her marvelous SLP has Miss L has been working on this with her, and I’ve been trying to encourage more opportunities like this, and here we see results! Woo!

For anyone who is working on this particularly, here’s the instructions I was given. (Note: Braska’s big motivators are letters and numbers.)

I’m to show Braska a letter and ask her what it is. She will tell me correctly. Then I ask, “Braska, is this a dog?” (The key being to choose something that is as far wrong as possible….not just another letter, but something far out.) She should answer, “No,” of course. But usually, she will continually answer “Yes,” until we tell her to try again and repeat the question along with a cue sign for the correct answer.

The fact that she’s getting this is so neat. She’s really starting to take all this crazy good, well-articulated, speech of hers and combine it into useful language. And that’s fun.

Monday, when we picked her up from my parents’ place, I realized I hadn’t called the school first thing to tell them she wouldn’t be there. So I said, “I forgot to tell your school that you weren’t going to be there today.” And I went to get the phone. She came with me and said, “Call Miss A___.” Yep, that’s what we did. She connected that telling the school anything would mean that we should call Miss A. Nice. Good stuff.

31 for 21: A special girl

2010-10-05T06:25:00.001-07:00

Last night I took Braska with me to WalMart. She loves to go shopping, and she’s always happy to sit in the cart and say hi to people or point out various items or letters that she sees. She’s a fun little shopping companion, and I realized while we were walking in that I don’t get to take her much anymore because I usually go when she’s at school in the mornings.

At one point, a lady from behind who had 4 little kids with her said, “Oh, she is SO cute!” I wasn’t sure she was aiming her compliment at Braska, but then she cam around us a few seconds later and said, “She’s adorable! How do you keep her glasses on??” [This is probably the most common question of ANY kind that we get when we’re in public. Followed closely by “How can they tell what prescription she needs with her glasses??”] I gave the general rundown of the fact that she’s had them since she was 13 months and just accepted them from day one because she could finally SEE things.

As that mom moved on, an employee there came over to talk to Braska. Of course, she looked the lady over and didn’t talk for a bit. People always ask a question and then repeat it about 4 times before she will answer… and she’s still processing the first time. But I don’t get into “Hey, if you’ll ask the question once and pause for about 2 seconds, she will answer you.” I usually try to get her attention and make eye contact and ask the question… what’s your name, do you have a sister, are you shopping? Braska did finally tell her what her name was. Then she pointed to my shirt, because I was wearing one of my NEBRASKA t-shirts. And she knows that’s her name, so she was providing a visual aid for the lady. I thought that was funny.

We finished picking up our few items and headed for the checkout. As we were steering toward the line, a lady passed and said, fairly loudly, “It’s a special child! You have a special little girl.” Like I won something. It was in that kind of celebratory tone. She came up beside me and said that she just LOVES the “special ones” because they are SO sweet. Braska smiled at her, with a hint of hesitancy because it was kind of in-your-face-niceness happening. I agreed with her that I did have a special girl and she was, in fact, pretty sweet.

She went on and we checked out and headed for the door. Just as we were passing through the did-you-steal-anything detectors, an older gentleman with an unidentifiable specialness of his own leaned over to me and waved at Braska. Then he said to me, “Hey, did she pick up the bill for ya today?” and he laughed. I told him I always let her pay when she comes along. He thought that was great and laughed again as he walked away.

These people were sweet to interact with us, they were honest in their interest or compliment. They held no disrespect for Braska’s disabilities, though they noticed she was different. They were not all genteel in their approach or up to date on the current appropriate way to say things. But they saw a little girl who drew them to make a little connection, and that’s great. I welcome that, and I won’t interrupt it to point out that their admiration needs to be said in a politically correct way. To me, that’s completely ridiculous.

I am not a champion of all the right terminology. This is not news for most of you. I appreciate that these people wanted to engage us. They could have said any number of “worse” things, “wrong” words, or words in the “wrong” order, and it still wouldn’t have bothered me. I want nothing more than for Braska to get to be appreciated for being a little girl. I’m not too concerned with how it’s said when the spirit is purely joyful and full of admiration.

Me ‘n Jack: After school pictures

2010-10-03T07:45:00.000-07:00

Me and Jack aren’t in the same class this year, but our classrooms are just next door. Sometimes we get to see each other on the playground, and we always get excited about that! Our teachers things it’s pretty funny.

But even though we’re not in the same class, we still like to do our cute outfits together sometimes. Or at least our mommies like that. And as long as we’re cute, it’s ok with us.

So after school a few weeks ago, we stopped for some pictures by our cars.

”We will stand here, but no one says we’ll smile.”

”Hold it in, Jack. Don’t giggle! I think I’m gonna laugh!”

”Ok, maybe Jack’s too silly not to smile! And me too!”

“That’s it! All done with pictures, Mommy.”

Braska: More pictures from my friend visits

2010-10-02T07:12:00.000-07:00

Remember back when I had a party weekend with lots of friends and lots of parties?

Well I have some more pictures to show you from then.

Me and Jack stood in the picture place (by the door) for our pictures. We have matching clothes and he’s cute. But I think I win, don’t you?

Madelyn helped me decide what we would get at the dinner place. She’s Jack’s big sister, and she is fun to play with.

On Sunday, we went to church with friends too. Or they went with us really. Jack and Nichole even got to go to my class with me! It was great!

One night, Ellie, Nichole, and Nina came over to my house. And Jack came too. We watched Signing Time all together while mommies and daddies talked about stuff. Nichole is REALLY good at her signs!

31 for 21: Want an iPod touch?

2010-10-02T04:58:00.000-07:00

I don’t have one, but I’ve got a friend or two who would NOT be without theirs.

Stephanie is offering up an iPod touch in efforts to raise funds for this little beauty to find a home. Her name is Tori, she is in Eastern Europe, having already been transferred to the dreaded mental institution when she turned four, and she has a diagnosis of cerebral palsy.

Stephanie just returned from rescuing her two precious boys from this country, she saw the conditions that so many sweet children live in. She has a heart to help them find homes, and she’s putting her money where her mouth is and putting up the iPod touch for incentive for others to join the effort.

It’s great. I will help her spread the word. Absolutely.

But really, it’s a little sad to me that we need to offer fancy prizes for people to donate five or ten bucks. It’s still sad to me that people can’t just hear that this child will in all probability die in the institution where she lives with others of varying degrees of mental and physical disabilities and WANT to help bring her to a loving home.

Such is reality. I don’t have any desire for an iPod touch, not really into any of the “i”gadgets at all. But I am into kids who should not have to live in cement rooms without interaction from anyone who can love on them.

Many of us bloggers are doing this 31 for 21 thing…a great time to find blog content for posts. So I ask… can you AT LEAST share Tori’s story and hopefully donate a bit to her account as well. We want to help a family find her, help a family afford the adoption process, and help that family bring her home soon?

Braska: It’s time for my month again!

2010-10-01T10:25:00.000-07:00

I suppose maybe it’s not my month, but it’s the month when we get to talk a whole lot about some of what makes me “extra special” as Mommy says.

It’s Down syndrome awareness month! Are you aware?

My friend Georgia’s mommy does this really neat thing for our month (It’s Georgia’s month, too, ya know.) You can read about it if you click on the cool little button right down there. Like under this. See it?

Grab This Button

Mommy helped Miss Tricia get the button ready, and everyone has it on their blogs so other people can know about our month! Isn’t that great?

So I’m gonna put things up every day, as much as I can, and most of it will be pictures with little stories. Because even though I am “extra special,” I do regular stuff every day that somebody might want to see.

It’s gonna be a great month!

Eunice Kennedy Shriver Day [Disability, Special Olympics]

2010-09-24T22:01:00.000-07:00

Today is Eunice Kennedy Shriver Day (EKS Day). My friend Jen tagged me to help spread the word about this day celebrating Mrs. Shriver and her contribution to the world through Special Olympics and so many other avenues.

I’m in a conference this weekend but I wanted to share a couple links for you to check out…

~~Jen has a post with more info and some great quotes here.

~~More good stuff from Michelle’s post at Big Blueberry Eyes.

~~SpecialOlympics.org has a wonderful spread for EKS Day with many neat links and articles.

Mommy report: Skill surprises

2010-09-23T19:38:00.001-07:00

I’m a horrible blogger lately. No excuses except life.

BUT--

There’s a couple things I just don’t want to forget that have happened lately relating to Braska’s development.

We’re just beginning work on potty training. I won’t go into great detail because that’s not really me in an area like this. Suffice it to say that both girls are loving the process, and even though they’ve been totally fine to go for quite some time now, especially Braska, they’re picking up pretty quickly on the routine. We’re not in “full training mode” or anything, but the preliminary work is going well.
When I drop Braska off at school in the morning, she is to take her backpack to her cubby and then we go wash her hands and find her nametag. The other morning she took her backpack (which is actually too big for her to wear…causes balance issues even though it’s a mini-backpack) and carried it right to her cubby. Leaned over and patted her name on the bottom of it and said, “Braska’s cubby.” Nice! We know that she can recognize her name, but it’s been reinforced a couple times lately and with others besides just me, which is fun.
She also can do her washing-hands and nametag-finding procedures by herself, too. I generally help her enough that I don’t realize what all she can do herself. I stepped back one day, not intentionally, but she didn’t wait for me and continued her morning routine just fine! She stepped up to the big sink (on her stool), turned on the water, reached for the soap (automatic motion sensor kind…waited appropriately), didn’t quite get it scrubbed all around before it got washed off, but oh well. She rinsed and turned the water off. Then she stepped down (with assistance, steps are still very hard) and walked to the paper towel dispenser, pulled the rope 3 times like they’re supposed to (counting loudly “one! two! three!”), tore off the towel, dried her hands and walked to the trash and said, “Throw away!” She marched her tiny self over to the table and found the correct nametag and said, “Braska’s nametag” and handed it to me to put on her back. I told Julie that morning that I clearly have been holding her back by helping so much each morning. She doesn’t need so much! Amazing!
Her teacher also told me that she can identify her two friends’ names from her own and will say each of them correctly when shown the names. (On her “small class” days, two days a week, the class is just two little boys and Braska.) The teacher held up one name and Braska proclaimed clearly, “Dominic!” Then they showed the next, and she said, “Braska!” And then the third one she studied for just a sec and said, “Colter!” Apparently this has happened more than once and in various name order. I had no idea…
We’re preparing for her IEP meeting at the end of October. Not too much to prep for this time, though. Our team is good, she’s met many goals, and I think we’re in good shape for this next year.
She’s now good with her letters—upper AND lower case--thanks to Preschool Prep. She can do her numbers 1-10 on sight and in order. She can count to 20 consistently. And she’s got at least 8 shapes down as well. She’s doing well matching items of the same color, but she still struggles with naming colors appropriately. She always says *a* color, but it’s not always the *right* color.
And NO SICKNESS YET!!! (For Braska, that is. Kinlee’s had it, but Braska’s not caught anything! Woo Hoo!)
Her feeding is picking up a little, though it’s very slow. She’s just starting to agree to chew on something once or twice, and only if it’s in a pouch (so that pieces aren’t coming out into her mouth, which bothers her greatly). But with a Ritz cracker, she will bite a piece, sweep the large pieces out of her mouth with her tongue, but she is handling the little pieces and crumbs pretty well. This is a HUGE improvement.
Still no drinking of any real quantity. No straw success yet. But she can raise an open cup to her mouth and sometimes get a little. We only put a tiny bit in or she ends up soaked! But she’s becoming more cooperative with the work process. Our feeding therapist/OT is GRRRRRRREAT!

That’s all for now… I’m exhausted from a night of both girls being up numerous times last night. Not sure what was up, but they really ganged up on me last night. Hoping for better sleep tonight!!

Braska: Party weekend pictures

2010-09-18T20:45:00.001-07:00

I can’t believe I forgot to show you more pictures of my fun weekend with all my new friends!!

On Friday night we played at Jack’s grandma’s house. We were having so much fun that we didn’t really want to stop to take pictures with our mommies.

We had neat shirts that we wore, too. So everyone could tell that we were all together. Me and Jack wear matching stuff sometimes, but we even let KiKi have one too!

Saturday morning we went to a different church than ours and played with some fun stuff. First we played in a room with toys. Russell was showing me how to put the cars on this one. They went really fast!

Miss Julie played with Micah. He’s from a place far away that has a really icky football team called Packers. I say NO Pack, Go Bears!! But I still like Micah cause he’s super cute and really funny!

We also got to play on this BIG playground inside the church! It was SOOOO fun!

See me up in there with Daddy? I just love to climb, so I played in there the whole time!

Here’s a picture of us after we played. Some of my friends had already gone home, but this is most of us. I’m so glad they all got to come and play!

More pictures soon!

Buy shoes AND support DS!?! Perfect!

2010-09-09T14:13:00.001-07:00

ShoeBuy.com has a great deal today!! On Thursday, September 9th only, (TODAY!) ShoeBuy.com is donating to the National Down Syndrome Society for each pair of shoes purchased!

AND—you can get a 15% discount if you use code INSHOES at checkout.

What a deal!! Go check out the options!

(Thanks to Cate for the tip!)

Braska: Parties and more parties

2010-09-02T20:48:00.001-07:00

When you go someplace, or when people come to your house, and there’s lots of friends and fun stuff, it’s called a party. And tomorrow and the next day AND the next day we’re going to have a bunch of parties! There’s a bunch of my blog friends and Mommy’s mommy friends who are coming to our town to play together all weekend. (I think there’s some daddies, too, but a few of them might like to go to ball games more than play with us.)

It’s going to be LOTS of fun! And I’ll show you some pictures while we’re playing, and then we’ll have a whole bunch when it is all done.

Here’s what we’re all going to be wearing… shirts with this on them.

Don’t forget to come back and see pictures of all my friends!! Have a happy weekend! I know I will!

Braska: Good sleep

2010-08-27T20:50:00.001-07:00

Now that I’m feeling all better after my surgee, I’m back to sleeping really good. I even sleep on my back sometimes now. And I’ve never done that before.

See my cool shirt? Miss Julie got it for me from Miss Amy.

Me ‘n Jack: New teachers, new room, new friends [Down syndrome, preschool]

2010-08-18T21:18:00.001-07:00

Today was the first day of school! I didn’t get to stay the whole time since I’m not all the way better from surgee yet, but I had a lot of fun while I was there!

Me and Jack decided to wear our shirts that he got for us on his trip a few weeks ago. He came to my house before school so we could take some pictures.

“Good morning.”

Braska: “We’re not going in the house. Pictures are outside today. You ready?”

Braska: “Come over here, and we’ll let KiKi in the picture with us.”

Jack: “What if I want to just stand here?”

Girls: “Is he going to sit down?” “I don’t know.” “Does my hair look ok?”

Braska: “What if we kind of sit like this? It’s what the cool kids do.”

Jack: “Ok, I’m here. What now?”

Girls: “Just wait for Mommy to take the pictures. Do your hands like this.”

Jack: “You want cheese? I’ll give you cheese!”

Braska: “Don’t look now but he is being goofy again. No! Don’t look!”

KiKi: “He’s still pretty cute, though.”

Then we took some more pictures in the hall by our classrooms. We’re not in the same class this year. I don’t really like that, but at least he’s right next door. It was really weird to go to meet new friends without Jack.

”Are we done yet? It’s almost time for school!”

”Please, God, help me make some fun friends in there.”

”Here’s the plan… if you miss me, just knock on the wall three times and we’ll meet in the hallway.”

”I like my cubby, but seriously… why can’t Jack be in my class with me? Where is he?”

Me and Jack both had good days at school. Tomorrow I get to stay the whole time because there’s only 3 kids on my small class days. Then next week I get to go regular all the time! I like my new teachers and I think my new friends are really nice too.

While Kinlee was waiting for me to get done at school, she played on the pirate ship.

She went around and around and around and kept going down the slide.

Then she found some great big balls. Almost big as her!

Here’s some little movie of Kinlee playing. (Grandmas like these kinds of movies.)

Make an on-line slideshow at www.OneTrueMedia.com

YAY for school!!!

Mommy report: Aaaand, we’re back

2010-08-16T09:36:00.001-07:00

After a bumpy start to the night and a few fussy times, we finally had a block of several hours of sleep. Praise God! This morning, Braska woke happy and ready to go.

So yes, I took pictures of her doing nothing. But it is everything just to have her feeling good enough to want to play on the bed again!

(click on the pics to make them bigger)

Mommy life: Card campaign for Sarah and Joyce [Down syndrome, friends]

2010-08-07T11:34:00.001-07:00

My awesome bud Jen has had a MARVELOUS idea that I’m unfortunately late getting in on with all the hospital happenings of late.

Most of you know Sarah, a very cool young lady with Down syndrome, and Joyce, her lovely mother, from My Name is Sarah (formerly Class of 2008). Joyce is opening a new fabric store and Sarah has been super excited and helping get it all ready. This is a dream of Joyce’s, having a fabric and quilt store and a place that can employ those with various disabilities. This Monday, 8/9, is the grand opening, and it’s also Sarah’s 21st birthday! So how awesome would it be to flood their mailbox with best wishes for store success and birthday wishes for Miss Sarah?!? (By the way, you don’t HAVE to know them to participate. How fun to congratulate someone on a special event just because they will appreciate it!!)

PLEASE get a card in the mail to them asap. I know it’s short notice. They will be celebrating all week. If it doesn’t make it by Monday, that’s ok, but how excited will they be to see how many people took the time to share in their celebrations! And if you’re a blogger, PLEASE post this on your blog as well. (Feel free to copy and paste!) These wonderful ladies have provided so much insight into their lives and the experiences that have brought them to where they are… I just love seeing Sarah get excited about things and imagine how Braska will be at her age!

I’m printing a couple pics of the girls to put inside our card and we’re shipping them out. Can you take a minute to send one too?

JEllen’s House of Fabric
Sarah and Joyce Ely
5259 Mayfield Road
Lyndhurst, OH 44124

Thanks, Jen… awesome idea! What a heart you have in there, girlfriend!

Time to go home [Down syndrome, tonsillectomy, adenoid, surgery]

2010-08-05T15:58:00.001-07:00

A little while ago, they said I could go home. But I had to wait for things to get all done. So I rested on the couch a little.

Then I waited some more. I’m tired, you know. Very tired.

Then my super great nurse, Miss Amy, came to get me all unhooked from my cords and stuff. She took my cover off my arm and there was all this weird tube and tape on my arm. Maybe THAT’S why my arm hasn’t felt very good!

She started to take it off, and she did it slow and nice, but it still wasn’t much fun.

Then I had to wait just a second for her to get the rest of it. Almost done.

Now she’s working on the hurty part. I really really really don’t like that hurty part.

I tried not to cry as long as I could, but it just hurt too much. But I only cried a little bit.

(This super sad face is ‘specially for Daddy and Grandma C. You’re both a little tiny bit mean, you know it.)

When we came home, we stopped and had lunch with Daddy since he works close to the hospital. Then we came back to our house, and I went right to sleep on the way.

Morning with George [Down syndrome, tonsillectomy, adenoid, surgery]

2010-08-05T08:59:00.000-07:00

I woke up and I’m still at the hospital. I still have this big thing on my arm that makes my hand not work very good. But I got a little sleep. Even if I did wake Mommy up alot. It’s not much fun to sleep in a hospital with a big thing on your arm and cords stuck to you.

This morning I’m just going to relax a little and watch some George. He’s my favorite monkey.

(See my pictures on my bed… this is so I can remember my sissy while I’m here.)

(And this one is so my doctors and nurses know what I look like when I’m not icky and grouchy.)

(Because this is what I look like lately.)

Mommy gave me some more milk this morning in my tube and I didn’t throw it up yet like I did yesterday, so she said that’s good. If I can do good and keep my milk in me then I can go home later today maybe. They keep telling me how extra special good I am. Better than lots of other kids who have their mouth worked on like me. But I’m cool like that.

Thanks for checking on me. Mommy says when I decide I want to smile again she will take a picture. It’s time for Sid. I have to go see what he’s going to learn about today.

Surgee day [Down syndrome, tonsillectomy, adenoidectomy, hospital]

2010-08-04T08:51:00.001-07:00

Today Mommy’s taking me to the hospital and we’re gonna do surgee. I’m not sure what that means, but she said she’s going to stay with me while I’m there a few days, so I’m not scared.

This morning, since KiKi and Belle are at Grammy’s, me and Mommy are just hanging around at home and getting ready to go.

Mommy was yelling for me after I first got up, but I was already helping her take the trash out.

After we got dressed, we had some silly time in the living room while we were watching Sid the Science Kid. I love Sid! Mommy was talking mean to her camera because it wasn’t being nice to her. It wasn’t taking pictures like it was s’posed to do.

I think it’s funny when Mommy talks mean to the camera.

As long as I have one of my cords to bite, I don’t really mind what the camera does.

Have a fun day. I’m gonna go get my bags ready. Maybe I’ll show you pictures of my sleepover room later when I get there.

(Mommy note: We’re to report to the hospital at noon. Surgery this afternoon is to remove tonsils and adenoid. Recovery is generally pretty rough, but we think this will help her in the long run. Updates when we can. Prayers appreciated.)

I’ve come a long way, baby

2010-07-29T10:27:00.000-07:00

I posted this on the iVillage DS board yesterday, and though it uses pictures I’ve posted recently here and on Braska’s blog, I thought I’d repost it here. Because sometimes I forget just how blessed I am…

Lately, my attitude-filled toddler is not wanting to cooperate with the dozens of pictures that I take every day. So I get a lot of unusable pictures. BUT her dad captured one on Sunday that made me stop and really realize how far we've come...

Just over 44 months ago, Braska was born, we were shocked, I went into meltdown, and all rational thought left my brain, apparently. Even though I'd had experience with a variety of teens and adults with disabilities, including DS, I had a picture in my head of what my little girl would be like, and it wasn't pretty. It was grim, and boring, and unfun, and sad.

But wow...if I'd only been able to get a glimpse of THIS on that cold day in November...

I thought all my dreams of cute bows and girly clothes were lost. She wouldn't be pretty, she would just "look funny," I figured. I figured she would be a sweet baby, but I never expected such a FUN little girl!

I can't believe I thought she'd never giggle and play! I can't believe I thought she would be a little bump in the corner who wouldn't interact with people. If only I could have seen her with her little sister as they wrestle on the floor!

I thought we would never be able to chat about silly things, that she wouldn’t be able to talk clearly, that people would want to shy away from her.

But this morning she has run around the house with her sister, giggling and saying, “So funny! KiKi silly!” over and over. She came up to me while I was typing this to say, “Hi Mommy!” as clear as anyone could say it, and then followed the hug I gave her with “I love you” as she turned to go back to play. She’s a magnet in stores and public places and people just seem drawn to come over and chat with her. She is always happy to oblige.

I feared she wouldn’t learn. But we just finished doing her morning practice for her letters, numbers, shapes, and colors. She got every single letter in the alphabet right in the random flashcards. Twice through. And she’s 3. And she has Down syndrome. But who cares?!? She matched her colors and shapes like she was asked to do. She can name her shapes, and she is getting better with her colors.

She has amazed us over and over, but really all the change and growth has been in ME, for sure. We went from fear over the diagnosis to actually hoping that our second one would have DS when we found out I was pregnant. Crazy, I know! (We kept KiKi even though she was all typical and everything. :o) Ha!)

Not every moment is a party, but they are all so much better than I allowed myself to imagine!

The only constant is change

2010-07-22T21:25:00.001-07:00

The girls are home. They were very excited about their time with Grammy and they were excited to see me, which is nice. They generally don’t seem to care too much if I’m around or not if others that they like are there.

For those of you following the school saga, there’s another piece of the fun puzzle to add.

Recap: Miss N was Braska’s teacher last year. We like her very much. Braska was assigned to her again this year, but in the afternoon. That was a no-go with me. So after the short-lived no-budging policy, they moved Braska to the morning…to Miss N’s class. YAY!

And when we thought it was all settled…. the phone rang again.

Miss N called to tell me that she has just accepted a new position within the school to work with the kids getting ready for Kindergarten, and I’m happy for her that she’s glad for the move. But we’ll miss her as B’s teacher. She assures me that I’ll like Braska’s new teacher, as she was Miss N’s mentor. She sounds like a good fit. We’ll get to meet her in a couple weeks.

So in summary… I’m SO glad we didn’t cave to the afternoon plan JUST to be with Miss N, since she wouldn’t have been there in the end. I’m hopeful that things will go well, that Miss A will be just what Braska needs this fall, and that Jack also does great with his teacher in the room next door to Braska’s room, Miss B.

Ask me if I think this is the final chapter in this interesting story… go ahead. Ask.

The ride continues… [Down syndrome, preschool]

2010-07-16T21:45:00.001-07:00

I’m tired, and it’s late, and I had a nice evening so I want to go to bed with that peace to put me to sleep.

But I wanted to share the latest in the school saga.

Remember when I said yesterday that things can change quickly?? Late today the school called, a different contact, one that is more familiar with us and a person I respect for the work she’s done for us before. She told me that after talking with a very wonderful member of Braska’s team and others at the school, they’ve decided Braska WILL be moved to a morning class. I don’t know the details yet, who her teacher will be, if it will be an “early 3’s” class or a “3’s” class. I told her I’d prefer the “early 3’s” option, and she was surprised. But I feel like that would allow Braska to learn from her classmates, both those with IEPs and those without, and she wouldn’t be quite so much smaller, possibly. (We’ve had some issues related to this, but I’ll have to talk about that later.)

I’ll know more next week. We’re still thinking through everything. But I’m glad that the school was able to make this adjustment. It’s only right, in my opinion, to offer an option that will allow the child to succeed. I do appreciate their efforts.

Answering school questions [Down syndrome, preschool]

2010-07-15T21:27:00.001-07:00

Several of you have asked questions in comments or emails, so I’ll elaborate a bit more about the school situation…

As far as why she was put in the afternoon class and if we had a say… There was no request process or any kind of communication from the school until we received the call to tell us where she had been assigned. We were told if we had any issues with it to call someone, and that’s what I did. The person apparently in control of these things is who told me that there wouldn’t be any “shuffling” happening. Obviously, had I been given the chance to put my 2 cents in, I’d have been very clear with this info about her needs at that time. It never dawned on me they would choose to put her in an afternoon class. It seems so very obvious to me that a child who has been noted as having focus issues in the classroom anyway would be assigned to start school at the least fresh time of the day. I’m glad they wanted to put us in Miss N’s class, and if that was a special concession that I didn’t know about, I do appreciate the thought. But Braska’s ability to perform and benefit from school is still primary.

(I’ll add in here that Jack is in the same boat as Braska. They were assigned to the same class, which we like, with the teacher we like, but not at a time that will work for either of them. Julie may talk more about that on her blog at some point. She is also quite unhappy with the situation, but she’s on vacation right now in the Sunshine State, so not sure when she’ll be blogging.)

We were told that “not all kids can go in the morning,” that they must have afternoon classes, so some kids have to go then. I get that. But I have now talked to three other families who have kids at our school, kids with DS, and these kids are older than Jack and Braska by at least 6 months, and they are all in morning classes. I was told by the school rep that they put us in with the teacher we liked, and I’m guessing that this is why they did the afternoon class. (Her morning class is a “young 3’s” class…the kids who have just turned 3 over the summer. And that’s where the kids who turn 3 during the year go when they start. There are many of these “young 3’s” classes. We would have been FINE with them being in that class.) I’ll state again…we DO like that teacher, and I had hoped Braska would have her again, but I can’t do the afternoon class even for that.

Because there was no communication or even a chance for us to preemptively let them know that afternoon was NOT ok, it would seem that there would be a back-up plan if the assignments simply don’t work for the child. But it does not appear to be so currently.

I’ll also state again that part of me feels I need to go ahead and take steps to get her moved to the morning, if only to make sure that this process is corrected, that it’s not left as ok as is. But for Braska, NOT being there, from the health standpoint, may well be better, so right now I’ll leave the battle to Julie. She’s better for the job anyway!

It’s also been mentioned that Braska could nap before or after school… After wouldn’t be an option, because she’d still be totally useless while AT school because she would be tired. And napping after 4:30pm, when we’d get home, would be just too close to bedtime. And before, taking feeding time into consideration for her required schedule, would mean that she’d be needing to go down for her nap before 11 am. And that’s just not going to work. She’s still in her “go mode” at that point. She hits her wall between 12:30 and 1pm, so she’s generally snoozing solid by 1:15pm on most days.

Regarding the question of if we have other schools to choose from… Nope. That’s the easy answer. Our school district contracts with this specialized private school for Early Childhood Special Ed (ECSE). Some call it a developmental preschool. The classes are generally close to 50/50 kids with IEPs and kids without. So everyone in our district who qualifies for ECSE goes to this school. Another neighboring district has the same situation with the same school. The third district in our area has their own ECSE building/program.

Clearly, this is not the way I’d have preferred it. But we’re going to move forward feeling comfortable that this is the right choice for what we know and have access to right now. All this with the knowledge that things can change quickly, as we’ve learned once again. But for now, we have a plan and we’re ok with it.

Best option for learning [Down syndrome, preschool]

2010-07-15T12:20:00.001-07:00

Well, well, well… it’s been a very interesting couple of days.

Thanks to all of you who have given input on the afternoon school versus nap situation. I’ve really appreciated all the different perspectives and it’s been good to think through a variety of things.

Before I give you the latest, I’ll answer a couple of questions…

Bedtimes: The girls go to bed between 8 and 8:30p usually closer to the 8:30p mark. It’s rarely much later than 8:30p unless we’ve been away from home for the evening for some reason.

One thing to consider regarding bedtimes with Braska is that she is tube fed for the majority of her nutrition, and her intake is limited to the volume she can hold at any one feeding. We don’t use a pump, so she just gets bolus gravity feeds 4 times a day in addition to whatever she might eat orally. But she ALWAYS needs a feeding right before bed to get her calories and fluids in for the day. She simply cannot tolerate all her required amounts in volumes that would allow us to cut the bedtime feeding yet. And because we have to allow at least 4 hours between feedings in order that she can keep it down, this affects when she can go to bed. We try to work it out so that her last feeding is at 8pm, but if the schedule gets off at any point in the day due to errands or just life in general, then it can sometimes be a little later. There’s just not hardly any way to make her last feed before 8pm. The 8am 12n 4pm and 8pm schedule is the one that fits her best. So we can’t really put her to bed at 7pm, for instance.

I hope that makes sense. We just have some additional restraints on our routine than most.

School options: I had hoped I could talk with the school, explain our situation with naps, illness, and focus issues in the afternoon, and they would be willing to make some adjustments, but that wasn’t the case.

So here is where we are right now… according to a representative from her school, she may attend the afternoon class or no class. I was told that they are not willing to move her to a morning class and that they ARE offering an appropriate option for her. Clearly, I disagreed and told them so. Politely but firmly.

I’ve decided that the afternoon class is not an option at all. After much deliberation and prayer and consulting others in like situations, I’ve decided, and M agrees, that she would gain no benefit from the afternoon class and would only be in a position for negative effects of the change—in reduced sleep, inability to perform well at all during that time period, and increased concern for illness, which has already been excessive since she started in November.

Beyond that decision, I’m still in limbo. The representative from the school couldn’t offer me any info about where to go next. I tried to contact the district (our district contracts with this specialized school for Early Childhood Special Education) but I’ve not received a call back. They aren’t in every day at this point, apparently. I’m guessing I’ll need to reconvene the IEP team for a meeting and set up new placement for itinerant services. This will mean that we will receive the therapies but no class time. I’m hopeful that they will not make that difficult to achieve.

My feeling right now is of disappointment. It’s not anger, though I’ve been close. I’m just so disappointed in this school. We chose to live where we do, precisely where we do, in order to be in the area that utilizes that school for ECSE. We heard many good things, and we have experienced many good things since we began back when she was 2 and going 1 morning a week. Almost everyone we’ve dealt with has been wonderful, so helpful, very nice, and I count many of them as friends. I’m disappointed because we have now had an impasse at a point that doesn’t seem that difficult to resolve. At least to me. But I’m just the mom. I really believed they would be more willing to be INDIVIDUALIZED in their approach.

I kept being told that they can’t “shuffle kids around” (to which I responded that I’m not interested in “kids” I’m interested in my kid—one kid—and at 24 lbs and 3 years old she is not that hard to “shuffle around”) and that the schedules are set and that they have to have SOME classes in the afternoon, and kids will adjust. Well, of course they will adjust. But I don’t think I want or need Braska to adjust to this at this moment. It’s not necessary. She is 3. If she wants to nap and she needs to nap, then a nap she’ll get!

Braska’s teacher (last year and assigned for the coming year) is great. I’ve talked with her, and she is very understanding, but she’s not in a position to bring about changes in this situation. I had offered the option to the representative at the school to have Braska be in her teacher’s morning class, the “early 3’s” which is the age that she was with this last year. She would still be “behind” them, so the peer modeling element would be present. But nope. No dice.

I could probably raise a real mess at the school and with the district, get letters from everywhere, go right up the chain of command to get her in a morning class. I’m quite sure I could do it if I wanted to. But in the last couple of days, I’ve learned I don’t want to. (Though I have considered taking it to the top just to pave a way for some other family who will come after us…but I don’t know if I have that energy right now.) Braska missed SO much school this past year, and we would most likely be looking at the same thing again, because her habit of having her hands in her mouth so much is still continuing, no matter what intervention we try, and as long as she is doing that, she will continue to get everything that comes into the room. Why go through all the hassle for this and then just have her miss every other week again? Why deal with all the illness as it trickles down through all four of us and even causes M to miss work? It’s not worth that.

I say this alot—She is 3. There is time for school. She will go to school, I have no doubt about that at all. But all signs show me that it’s not the best choice right now.

So it looks like, at this point, Braska will not be in school this fall. I hope we can work out the itinerant services for therapies, but I won’t send her to school JUST for that if it means compromising on all the rest of my issues. I’ve talked with the pediatrician about taking a break, and maybe that’s what we’ll do. Of course, we’ll continue to work on the things we always work on.

Maybe we’ll only take off the first semester and then revisit the situation. But for now, that’s where we are. I am a little nervous, but I’m glad for some clear direction. She will miss going to school…she really does love it. But this is for the best, and the BEST learning option, in good health, is what I’m interested in right now.

Wow. What a difference a few days can make…

Comparing comparisons [Down syndrome, siblings]

2010-07-06T19:29:00.001-07:00

Today I received an email from a blog friend (who I didn’t recognize immediately…sorry!) asking a question that prompted what I have been meaning to post about for a while. So I asked permission to share the email and response, removing identifiers, for a couple reasons.

1. I don’t like to rewrite things when I don’t need to. Who has the time?
2. I know there are SEVERAL of you other blog buddies out there who can relate to this situation, and I’d really love to share your input with her as well.

So read along, and please share your thoughts…if you want to do a post of your own, or you already have one that’s relevant, leave a link in the comments. Thanks. Online support is VITAL, I think. I’d be lost without all the things I’ve learned from the other “DS moms.” (I know…not PC.)

______________________________________________

Her email:
I have a 2 1/2 year old who has down syndrome, and an 11 month old who is 'typical'.

My question for you is: how do you not compare them? At 11 months, V is doing more things than R did at 18 months.

It scares me how fast V is learning and reaching milestones. I am ashamed that I even compare them at all. It's so hard to watch R at her therapies, struggling to climb stairs, or say a word, or stack a block, yet V can do those things and we haven't even showed her!

I'm sorry. I don't mean to vent. I just thought you might have some advice for a mom with an older child with special needs and a younger child who will soon surpass the older.

Thank you.
_______________________________

My response:
Hi,

I’ve been debating a post about this, formulating it in my head very recently. Funny that you happened to write today. I don’t know that I have any great advice, but I’ll share how it looks for me.

As you might know, my girls are 27 months apart, Braska will be 4 in November and Kinlee is a few days away from 17 months. The simple answer is that I DO compare them, sometimes just because they’re my kids and I think every parent marvels at how different and how similar their kids are, no matter what their chromosome count is. Sometimes I enjoy looking at how Kinlee at 17 months is the same size Braska was at almost 3 years old. It’s fun to me, not to Braska’s insult, but just because I enjoy their differences. I love to take pictures of Kinlee in things that Braska wore, though now, they are wearing many of the same things!

That said… there are times when it’s not as “cute” to compare, and I’ve found that recently I’ve been faced with the hardest issue. It surprised me, but I’ve had to deal with it a little more than I expected. You see, Kinlee and Braska basically started walking at the same time…Kinlee was 13 months, Braska was 40 months. Braska has progressed well, is getting stronger, and has gained better balance, but she is still very wobbly and very much a “new walker.” Kinlee sped right past her, handling steps more skillfully, climbing more, balancing better, almost running at this point. Braska is significantly delayed in her gross motor—it is one of her toughest areas, as she has severely low tone. We know this, we knew this would happen, and it was ok. I’m not too bothered by the walking issue. BUT in the past couple months, Kinlee has taken off in her speech and language. This is Braska’s STRENGTH! Braska’s done extremely well with speech and enunciation, especially in the realm of kids with DS, and we’ve been very proud of her. We work with her, but it is clearly a natural strength of hers. With Kinlee fast approaching Braska in the speech “race,” I realized the other day that soon, ALL of Kinlee’s skills will be beyond Braska’s. And that was hard for me. I could deal with Kinlee passing her up in the weak areas, but once she overtakes her in the area of strength…what else is there? She already uses “yes” and “no” more appropriately than Braska, who only this past week has started using “no” when she has a preference that would make it the right choice. She can make her requests, follow directions, and understand a more complicated situation much more easily than Braska can. It’s all a little hard for me to accept, but yet I am excited Kinlee is doing so well. How to live in both of those worlds?!?

I never expected this to be a concern for me. We don’t really struggle much with what Braska “can’t” do. I’m fine with her pace of learning, I expect her to do her best, but I don’t care too much about where she falls on a chart or in comparison to other 3-year-olds. And yet, I’m hit by this situation of Kinlee preparing to fly right by her in the milestone sprint she’s on. What to do about it? I don’t know. I must refocus back on the fact that Braska is a phenomenal kid, just like she is. She is by far the sweeter, more compliant, consistently happier, easier to deal with, and more loving child. And I love that about her. Kinlee is pretty great in her own right, but she’s a challenge in many of these areas, which I think is probably to be expected, and yet we don’t really KNOW what to expect.

I do SO get what you mean about how the younger can just GET things, like without being taught specifically for hours and hours before producing a result. It’s been amazing to watch Kinlee surprise us over and over. Last night I took her to the store with me, and she looked over at the side while I was choosing a loaf of bread and said “Buns!” And she was right. They were hamburger buns. Something we NEVER have in the house. I think we’ve used them once at her grandparents a couple weeks ago… how in the heck did she know that?!? And animal sounds… we basically were reviewing with Braska, as we often do, just playing the “what does it say” game, and Kinlee knew them all right on after the first time through! I can’t get over how one day she doesn’t know (fill in the blank) and the next day she knows it completely! Braska has serious feeding issues, is on a g-tube, and isn’t anywhere near feeding herself, because she doesn’t really want food in the first place. Kinlee was given a spoon, shown how to use it once, and she has a decent grasp of it. Not that it’s perfect, but she gets it. Amazing! We often refer to Kinlee as the “superhero” of the family. But then Braska is the one who has endured open-heart surgery and thrived with beauty and grace throughout the whole struggle!

Would I want to change Braska to make her “keep up” better? Nope, not at all. I’d love it if she were to be able to learn more easily or grasp concepts more fully, but I don’t know what other things we might lose in that adjustment that I’m not willing to let go of. I have come to believe, once again, that she is precisely who she was designed to be, and I can only adore her for being so purely that. There is no pretense to her, she doesn’t try to be what she’s not. She’s 3, she’s a girly girl, and that’s all that’s there. And I like it that way.

I don’t know if this helps any, but I can only encourage you that there are a lot of us out here who are in the same boat. I have a few blogger friends who have a kiddo with DS as the oldest and then another one within the next couple years. It’s amazing how similar our stories are, and yet how we each handle it with our own style. If you wouldn’t mind, I’d love to post your question (names removed, so you wouldn’t be identified at all, if you like) so that some of the other moms in this position could offer their insight as well. Would that be ok with you?

The day that Kinlee uses her first full sentence in a more concise and language-appropriate way than her sister, I’m going to have trouble with it, even while I celebrate her accomplishment. I hate to see Braska be truly “behind” her little sister, but I know that Kinlee is going to be a great leader for her to follow after. Braska will benefit greatly from Kinlee’s being “ahead” of her!

Many blessings… love them like crazy, and celebrate them, no matter how quickly or slowly they got to the sweet spot. :o)

_____________________________

How would YOU answer the question??

Braska: A good fashion statement [Down syndrome, blog]

2010-06-14T08:32:00.001-07:00

I’ve heard people talk about a fa-shun stayt-munt. Mommy told me how to spell it right so you would know what I mean…fashion statement. Have you heard about this? I’m not sure, but I think it’s when you put on pretty clothes and then tell someone something. And I have something to tell you!!

So here’s the pretty clothes… these were our Sunday pictures from yesterday. Daddy took them while Mommy was getting ready for church. Me and KiKi were playing and we didn’t stand still to do good Sunday pictures. But Daddy sneaked in some good ones.

And now, here’s what I’ve got to tell you…..

To celebrate my new pretty blog that we worked really hard on, me and Mommy are going to be giving some fun things away to somebody who likes to read our stories! Do you like to get stuff for just reading my stories?

And here’s how you can get stuff… You’re going to like it! And there’s more than one thing!
~~~~Please note…if you are reading this on the Down Syndrome in Real Life blog, please go to Braska’s main blog to enter, if you would like! ~~~~~

1. Leave a comment on THIS POST TODAY (Monday) for an “early entry.” (That means you want to enter even though you don’t know what we’re giving away!) That gets your name in the hat TWO TIMES already!

2. There’s a place on the side of the blog that says “Followers.” (Mommy thinks this is a silly name because it sounds like we’re in a big line going somewhere.) But anyway, we’re going to see if we can’t find a bunch of new friends to share our stories with! So if you are in our Follower list already, you’ll get your name in the hat ONE TIME just because we are happy you like us!! AND---if you want to get on our list new this week, you’ll get your name in TWO TIMES!

3. Because Mommy likes to have friends like I do, she’s going to put her friends on her Followers list in too! If you want an extra chance to win stuff, you can get on Mommy’s list new this week, too! That gets your name in TWO TIMES! Click here to go to Mommy’s page so you can get on her list.

4. If you have a blog too—or if you have that book of faces thing-- and you want to tell other friends about our fun stuff this week, then you get your name in the hat another time! Just leave me a note so I can come see it.

So there’s a BUNCH of ways that you can get lots of chances win stuff… and on Tuesday, we’ll tell you what you can win. One of them is one of my very favorite things in all the whole world!

Wooooooo Hooooooo!!! This is gonna be SO fun!!! Come play with us!

Braska: Dashlyn’s sale day! [Down syndrome, adoption]

2010-06-04T10:14:00.000-07:00

Tomorrow is a big day at our house. Miss Julie and Mr. Allan are going to get Jack’s new little sister and my new friend Dashlyn very soon, I hope. So we’re having a big sale in our yard tomorrow to help them have enough money to go get her. Mommy told all about it over here. If you live around where we live in St. Louis, you should come!!! I’d like to get to see lots of people I know!

Braska: Fun day in the sun [Down syndrome, traits]

2010-06-01T12:57:00.001-07:00

I’ve got a bunch more pictures to show you, but here’s one for now. Can you tell what I did yesterday?? It was fuuuuuuun!

(Mommy note: I just LOVE pictures like this that show Braska’s crooked little pinky fingers. They’re one (two?) of my favorite traits of Down syndrome. I wouldn’t straighten those little digits for anything…. So cute.)

Braska: Last school day, for now [Down syndrome, preschool]

2010-06-01T12:12:00.001-07:00

Thursday was a big day for me. It was the last day of school for a while. And it was the last day with Miss Natalie and Miss Sue. They are my favorite teachers, so I wish they could just always go to school with me.

Before school, we took some pictures… you probably figured out by now that Mommy ALWAYS takes pictures.

Mommy says this is my Sincess Kennedy smile. It makes her think of my friend Kennedy when I make this cute face.

Then we went to school. This is my classroom.

When we first get there every day, we have to wash hands. First we turn on the water.

Then we get soap and wash wash wash! I love looking in the mirror, and Mommy tries to get me to look at my hands so I can do a good job. But it’s way more fun to make silly faces in the mirror!

After we turn the water off, then we get a towel. We pull on the handle 1, 2, 3, and then we stop. We tear it off and dry our hands. Then it goes in the trash.

Then we can get our nametag off the table and go play. Well, after we match our picture on the board with our name. But I just like to go play!

When it’s almost time to go home, I get to sit in this little chair when we all sit around on the floor and listen to a story and sing some songs. I like to sit in it even when we’re not singing or reading.

When it’s time to go, we all get our backpacks and sit at the table. Jack is sitting like a good boy at the table waiting for his mom.

Here’s me and Jack with Miss Natalie. She is our teacher. We like her a lot!

This is Miss Sue, and she helped me a lot when I wasn’t big enough to walk yet. She is SO nice!

I gave Miss Sue some extra hugs while we were getting ready to go.

It was a pretty exciting day. Now I have a few weeks to do other stuff with Jack before I go back for Summer School! I can’t wait! I love school!

Braska: For Sweet Ella Grace [Down syndrome, leukemia]

2010-05-29T13:23:00.001-07:00

(This is for my friend Ella Grace. She is sick with loo-kee-mee-uh. It’s a very bad sick. But she’s going to get better!! And she’s so funny! You should go tell her hi and see how cute she is. She loves BabyLegs, just like me!)

Do you know your letters?? [Down syndrome, speech]

2010-05-19T10:48:00.001-07:00

Here’s my last movie for you to watch. Here’s the first and the second if you missed them. At least until I make some more! This was when I was working on my letters and numbers… you can say them along with me if you want to practice, too.

Make an on-line slideshow at www.OneTrueMedia.com

Sayin’ my animals [Down syndrome, speech]

2010-05-17T12:43:00.001-07:00

Here’s another movie from last night. There’s still one more movie for me to show you later when I work on my letters and numbers. If you didn’t see the first one, it’s over here.

This one was when me and Mommy were looking at pictures on the computer of animals and stuff.

(Mommy note: I have been told more than once that I need to show Braska’s mistakes along with her victories in order to show a balanced—more “real”—version of her skills and abilities. I won’t digress too much about my responce to that thought, but I will just say that this video has both correct and incorrect answers. Hope that helps her seem “real.”)

Photo and video editing at www.OneTrueMedia.com

I like it when… [Down syndrome, speech]

2010-05-16T21:25:00.001-07:00

We got a really fun book at the library a few weeks ago, and it is my favorite! I know all the pages and I can even sit and read it by myself when Mommy is busy. She saw me reading today and thought we could make a movie. Usually she doesn’t talk to me when I’m reading, but she said this worked a little better to keep me going. I can take a long time to read a book!

So here’s a little movie…

Photo and video editing at www.OneTrueMedia.com

(Mommy note: She had just refused a nap, thanks to a 5-minute snooze in the van. She is a little sloppier than usual, but I think you’ll get the idea…)

There’s two more movies from today, but I’ll show them to you tomorrow. Make sure and come back to see them!

Having twins! [Down syndrome post]

2010-05-13T12:46:00.001-07:00

Did you do a double take at the title? Did you jump right into the post to get the “big news”? It’s funny what a couple words and an exclamation point can do to some people.

We’re not having twins. Or babies of any kind. Just to be clear.

I get asked a lot about how the girls are doing in terms of development and size, relative to each other. Only a few times have I been asked when we are out if they are twins. I think the difference in hair length is the big giveaway for most, at least that’s been the “tip-off” for a couple people who mentioned it. But we do get a lot of comments about how similarly sized they are.

There have been many times in the last few months when I’ve thought that this must be a little peek into what it’s like to have twins. At least for this little period we’re in right now. Developmentally, they are so close in age in many ways. Not all. Braska still has Kinlee beat with speech and language, that’s for sure. But Kinlee is picking up words and signs faster than I can keep up. But with gross motor, Kinlee has passed Braska by. Kinlee can climb more efficiently, walk steadier and more quickly, she is far more balanced and solid on her feet, and she has a great deal more stamina than Braska. With fine motor, it’s the same story. Kinlee can manage small things, open lids, sign some things more correctly, and she can push any button she wants with great accuracy. These are things that Braska struggles with. Though Braska knows far more signs, she doesn’t necessarily do all the intricate finger work correctly because her little cute, stubby fingers don’t cooperate with her.

Clearly, they are very different little girls. But for this short period, one that will probably be fading away by mid-summer, they are interested in much the same things, entertained by some of the same things, and they function very similarly in the home setting. Soon Kinlee will be enjoying her role as the leader, which she is practicing currently when she gets the chance, and Braska will be following and learning from her. And that’s ok. That’s not bad, in my opinion. It’s just what is.

I’m not selling Braska short, and I’m not saying Kinlee won’t learn from her later on. I think Kinlee will always learn from Braska, and there are definitely areas where Braska will maintain her “lead” for quite some time. But the reality of developmental delays is that at some point, the younger child will surpass the older child in some physical and cognitive realms. We’re ok with that, because we believe Braska is exactly who she is supposed to be. She doesn’t just “happen to have” Down syndrome, and she definitely doesn’t “suffer” from it. She was created just as she is, and though there are some times I wish I could help her in ways that I cannot, I wouldn’t change anything about her most core qualities and design.

Comparisons can be dangerous, I know. But I am comfortable that we are enjoying this time that they are so nearly matched and we’ll celebrate them both as they grow and progress through the next stages. We cheer Braska when she takes a bite with proper mouth and tongue position and when she closes her mouth around her straw, even if she doesn’t drink, because this is huge! And we cheer Kinlee when she eats her whole meal by herself—veggies, meat, pasta, fruit, and all, washed down with a big cup of milk. Different celebrations, but the same excitement for each. We’re impressed with them both for all they do, and just because they look so similar in size right now doesn’t mean that we don’t recognize their individual needs.

It’s fun that they can share clothes. It’s fun that they both love to wear bows in their hair. It’s fun that they both like to hold hands and walk to the car after church. They will change, we will change, and all the elements around us will evolve as we go through life. But for now, it’s kind of fun having this little tiny glimpse of what it might be like to have twins.

Post titles

2010-05-13T11:47:00.000-07:00

Just a note to the few of you who see posts on this blog primarily instead of on the blogs where they originate. (BraskaBear and JustRK)

Some blog posts will have keywords in brackets in the titles in order to facilitate search engines of a few special types finding them more easily. So if you see weird titles, that’s why! :o)

Thanks for reading!

Growing up numbers

2010-05-12T19:25:00.001-07:00

Today Miss Cathy came to see me. She helps me make sure that I’m eating good healthy things and getting enough cal-lor-ees. She has one of those silly scales that I have to sit on to see how big I am.

My new numbers are bigger than I’ve ever been! The scale said 23 pounds 4 ounces today. And I was 33 3/4 inches tall! Woo! I’m getting bigger!

Mommy says I still got alot of growing to do, but it’s good that I’m trying hard. My jeans have not been fitting me very well lately because my belly is getting smaller. (And I don’t really have a belly anyway!) I even had to change my pants at school today before Mommy left me for the day because my jeans wouldn’t stay up. Ha! I had droopy drawers, Mommy said.

Me and KiKi can wear the same pants, but KiKi is a little shorter, so I need my pants to be a little bit longer. But when we wear our summer clothes, we can wear the same ones. Isn’t that funny?? I need to get to working harder to grow so KiKi doesn’t get bigger than me real soon!

KiKi did her numbers today, too. She was 21 pounds and 4 ounces. And she is 31 inches tall. So she’s going to catch me soon, I think. She already has a bigger belly than me. I think it’s funny when we’re in the bathtub to play on her belly like a drum because it’s kind of big and out there.

We’re getting bigger. I guess that’s what we’re supposed to do. But Mommy and Daddy are trying to get smaller, so I don’t know what’s going on with them. Maybe they want to get little like me and KiKi because we’re so much cuter!

Mommy report: The clock is ticking

2010-05-06T06:54:00.001-07:00

Because Jen said I won’t have time to get an update up…I just HAD to do one in the quick time I have before they tell us she’s done.

We just walked her back to the OR. She’ll be back in no time. She was dancing with her daddy on the walk there. Of course I caught the moment between giggles.

Thanks for all your well wishes…we know this is a little routine thing, but it’s always nice to have people pulling for our girl.

Mommy report: Bright and early

2010-05-05T20:11:00.001-07:00

We get up with the chirping birds tomorrow and head to SLCH. We are to report with Braska at 6:45am to the 6th floor, so that means leaving home by 6:15am. Some of you are familiar with that area of the hospital. We’ve not had the pleasure of procedures on that floor yet, so it’ll be new for us to be on that side of things and not just hanging out with friends while they wait for their littles.

It should be a quick and fairly uneventful morning, we hope. I’ll be updating on here (Braska’s blog) via my phone if I don’t have time to deal with the computer. Bear with me if things look a little odd in the process.

Prayer team: Please pray that all goes well, no hitches, no complications, smooth sailing. She’s a tough cookie… but we don’t want her to have to hurt more than absolutely necessary. She has had more than a few rounds with anesthesia, but each one is a new risk and challenge. We expect no issues, but we prefer to err on the side of extra prayer! (That’s not an “err” that’s a good idea!)

In the meantime…anyone got a funny joke or embarrassing story (doesn’t have to be about YOU) they wanna share so I can pass the time while we wait?? Do share!

Windy Weekend, Part 2

2010-05-05T07:11:00.000-07:00

On Friday, we got up and went to Aunt Karol’s house. Me and KiKi played while Mommy and Aunt Karol worked on the computers for some neat things that we’ll tell you about later.

The big kids got home from school early, so we got to do some fun things with them. We went on a walk to see Laynee’s hee-hee’s. Well, we went to see them on Thursday, too, and they came right up and bumped into me and everything!! I was really afraid of them. And KiKi was too. But Mommy wanted us to go back again and try to say hello to the horses again. So this time Jade took us over in a fun wagon!

Moise has his own wheels, so he didn’t ride with us. Isn’t he handsome?!

Me and KiKi don’t like grass, remember? It’s itchy and it makes me very upset to touch it or walk on it. But look at KiKi! She got out of the wagon for a little bit!

I did a little trick, though. I put my hands up and said, “Weeeee!” I was very brave!

I don’t think those horses like me as much as they liked Laynee. They looked at me kind of mean, I think. It scared me a little…even though they were in their rooms this time.

(Mommy note: I want to make clear that Jade was NOT forcing Braska to be miserable of her own accord. She was actually pleading for the moms to stop terrorizing the child by making her be near the animals for pictures. Jade’s the nice one, to be sure!)

There’s also a goat there, and it was pretty scary, too.

KiKi didn’t get as scared as me, but she still wouldn’t touch it.

Then we got on the bouncy for some silly times. Jade bounced us nice, and it was really fun!

Here’s a movie of us bouncing with Jade and Moise…

Make an on-line slideshow at www.OneTrueMedia.com

They have fun swings in the back, too, but Mommy forgot to take pictures when we were swinging.

And this is Laynee’s tree…

More pictures coming up! And they are very special with some fancy dresses!!

Mommy report: Thursday’s surgery info

2010-05-04T13:37:00.001-07:00

I just heard from the ENT’s office. After all the back and forth and waiting and such, the final word is that Thursday’s procedure will JUST be tubes in the ears, not tonsils or adenoids being removed. There are a few reasons, but the main one is that he feels that it’s not fully necessary right now, that it wouldn’t really benefit her as much as we had hoped, so we’ll wait on T&*A.

Tomorrow we’ll find out the time for us to report to the hospital. But for now, you’re up to date.

Windy Weekend, Part 3

2010-05-04T13:01:00.001-07:00

On Saturday, we got up and went to Connor and Lucas’s house. They’re my friends who used to live in my old town. But they moved and we moved, and now they live close to Uncle Jim’s house!

We went over there and played for a while, then we took naps. After naps, it was time to get dressed up in my pretty dress and go back to Aunt Karol’s house.

I didn’t want to look at Mommy for pictures. She doesn’t like when I do that, but I’m not in the mood for taking pictures ALL the time!

The boys made me laugh, though. They are SO funny!

Then Mommy snuck up and got right in my face! I looked away a little just in time.

Why was I getting dressed up??? Because Jamee was all dressed up for a big party called Prom that night. And I thought I’d look pretty, too!

We went outside to take some pictures. Isn’t Jamee so pretty?!

KiKi walked around all silly, but she didn’t have a fancy dress. She’s still kind of cute, though. For a little sister, anyway.

We went to the front of the house for pictures, but I ran away! I’m getting fast, you know!

But Jamee was fast enough to catch me and we walked down the sidewalk together for some extra pretty pictures.

Jade and KiKi were watching…they’re pretty even though they’re not all dressed up. But don’t tell KiKi I said that. Shhhhhhh…

Jamee had a very nice necklace, so sparkly.

Then they told me that I didn’t get to go to the party with Jamee. I love parties. That made me sad.

BUT—I got to go see all the pretty dresses and handsome guys. There were lots of dressed-up people, but Jamee was the prettiest one down there!

And the big news! Jamee got a queen crown that night! I was already in bed, but we were so excited! Yay Jamee!!! I just KNEW you would get it!

Ok, almost done with pictures…last ones tomorrow!

Windy Weekend: Part 1

2010-05-04T11:23:00.001-07:00

Remember when I told you about my long ride and showed you the silliness me and KiKi were having on the bed?? (If you forgot, you can go here.)

Well, we had a really fun weekend with lots of nice people and some new friends. We went to Aunt Karol and Uncle Jim’s house a bunch, and it was fun every time!! They have lots of kids to play with and some great toys. I’ve got a LOT of pictures to show you, but I’ll do it a little at a time so you don’t get too tired.

We got there on Thursday and Mommy had to get our things out of the car. Here’s what me and KiKi did when Mommy wasn’t looking.

Then we went to watch Jade run. She is SO fast! Uncle Jim and Aunt Karol took us right down by where she was running so I could see really good. We said, “Go Jade!!!” (Well, I was thinking it, but there were alot of people around that I didn’t know, so I didn’t say it loud.) It was REALLY windy the whole time, so Jade had to work super hard to run fast.

We got to meet lots of nice people. Most of them were brothers or sisters or cousins of somebody. That is a really big family up there!

When the sun was going away, it got a little chilly, so I put on my warmer shirt that they gave me. This is when the wind was blowing so hard that I almost fell over. I said, “Whoa!!”

I did lots of walking, too. I’m getting pretty good!

Me and KiKi held on to the fence and watched everyone walking around and all the kids running.

Can you see what my shirt says???

It’s special for Laynee because she was always the best cheering girl and the prettiest girl at the running games.

We slept alot that night because we were so tired. That always makes Mommy happy when we sleep good and don’t get her up in the night. It was a good day!!

Come back to see more pictures and stories tomorrow, because the next day had more fun. (and a little scary parts too I think!)

After a long ride…FUN!!

2010-04-30T20:33:00.001-07:00

Before we forget to say it… Happy Birthday, GGJM!!! We love you!!

We are having a great time visiting Miss Karol and her family. They like to play and we got to do some fun new things. I’ve got lots of pictures and I’ll show you some soon. Did you know that horses are SO BIG??? I’ll tell you about that later.

But since Grandma C and Grammy liked our movie the other day, we’ll show you one that Mommy took of us yesterday after we got to our room where we’re sleeping. Me and KiKi LOVE to play on the bed, but we don’t get to do it much because sometimes we might get hurt. But Mommy let us play for a few minutes… you can see how much fun we had.

Make video montages at www.OneTrueMedia.com

Playing in the sun

2010-04-07T13:49:00.001-07:00

Yesterday we went outside in the front yard to play a little bit. It was really nice and sunny, and we didn’t have to wear our coats or anything. Mommy put some sunglasses on me that she got me when I was a tiny baby. Since I have glasses for all the time, I have never tried them, but today we did, and I thought they were pretty cool! They’re called Frubi Shades! Funny name!

Mommy took some toys outside for us to play with. I don’t like grass, so we had things that we could play with on the hard part. I haven’t used my walking toy much lately since I can do walking without it most of the time, but I thought it was fun to play with it outside. Mommy wouldn’t let me go for a walk by myself though…I kept trying to go where the cars go, so she made me turn around.

KiKi didn’t feel very good still, so she wasn’t wanting to play much. And she doesn’t like the sun. Oh, and she REALLY doesn’t like me to wear sunglasses. She got very upset til I took them off.

But she finally found a flower that she thought was pretty, so she played with it a little while.

I pushed her on my little bike with three wheels but we didn’t take a picture because Mommy was trying to keep us from tipping over.

We had a pretty good time, but we didn’t stay out too long. It was pretty warm in that sun, so we went in and played the rest of the day. But it felt nice to be outside a little!

Not a spring chicken after all

2010-03-31T17:14:00.001-07:00

This was mid morning. She was pretty chill and quiet this morning, but smiles were there. (Note the shirt…spring chicken…funny. Thanks Amy and/or Jen!)

This is about 5:30p.

She stayed there for a while, then sat up, scooted over a little, and…

Something’s not right. She has a fever of 100.5, which is quite significant for her generally cool normal temp.

My issue: She is on day 4 of her Omnicef, Zyrtec, Singulair, and Nasonex combo. She has been very obstinate and difficult at school this week—though she was a little better today, according to report. She’s only going half-days (90 mins) at school this week, on advice from the doc to give her more rest and time to strengthen from all this illness. Her congestion is better, though she’s still pretty snotty. It’s been nice to have her sleeping better, breathing quietly while sleeping, and I’m pleased with that improvement. So until the fever today, I was a fan of the new regimen. And I have no hard evidence that any medicine is causing her personality changes. But I don’t like unknowns.

Could it be that she’s just 3, as far as her behavior? Sure. But combined with the other issues, who knows.

Oh, and she has not wanted to walk tonight, while she’s had her fever. She won’t hardly sit up, and will NOT stand or walk. She’s been loving walking, since she’s progressed so well, and has been spending more time on her feet. Then yesterday at school, and before school even, she wasn’t wanting to walk. She did do ok at school, bearing weight some, but she was throwing things and yelling her protests, not cooperating, all very unlike her.

Once again, no answers, but something in my gut feels like something’s just not right. I’m about ready to have some blood work run, just to make sure nothing odd shows up. I called the dr tonight that we saw on Saturday, so we’ll see if she calls me back. I told them it wasn’t urgent, so it might be tomorrow. Hopefully she’ll perk up soon.

Thoughts or ideas anyone?

Mommy report: Wired and ready to sleep

2010-03-23T20:32:00.001-07:00

I’m home, after dropping Braska and M off at Children’s. We got her all set up and wired up, and she did SO well. I didn’t think she’d tolerate all the sticky things and leads, but she didn’t flinch. Well, until they wanted to use one that would hook around her lip. Nope, that was not going to happen. Thankfully, her super nice tech Donna had another cannula without that hook, so all was ok.

Here’s a pictorial version of the process.

The little TV with Sprout on it was the saving grace. She stayed focused on that and didn’t mind the rest of the action happening to her.

She was happy that Daddy was in p-jammies too and was ready to snuggle.

The final look, cannula and all.

A hug from Mommy before I left for the night. She was plenty tired.

Last minute adjustments. She had leads on her legs, chest, face, and head.

Ready to sleep, Daddy close to make sure she went down ok.

Quite a bunch of wires for such a small girl.

And finally, here’s a little clip with one sleepy girl’s “good night.”

Braska: Sleepover at the hospital

2010-03-23T17:49:00.000-07:00

Tonight I get to sleep at the hospital even though I’m not real sick or anything. They’re going to watch me sleep and see if they can figure out how to help me feel better and sleep better and breathe better. Daddy’s going to stay with me all night, too, because Mommy isn’t very good at sleeping at the hospital. KiKi is staying with Auntie Rachel and Uncle Patrick so Mommy can take us down tonight and pick us up really early tomorrow morning.

See you tomorrow!

Love,
Braska

21.3.10: Meet the precious Zoe

2010-03-13T20:54:00.001-08:00

In honor of World Down Syndrome Day on March 21, Reece’s Rainbow has a special project this month to help sponsor children for adoption.

I have chosen little Zoe as my special girl, to spread the news and put her cute little face out there, hoping that someone might want to scoop her up and bring her home.
Her birthday is just 6 days before Braska’s. She has just 8 months left in her “baby house” before she will be sent to a mental institution. Rarely do small children live more than a year in that environment. I just can’t bear to consider my Braska going to a place where no one would interact with her and she would be left to fend for herself, IF she’s not restrained to her bed.

How I wish I could go and get her, along with several other little ones, or at the very least find families to give them homes. Yet all that is open for me right now is to tell everyone about the need, and pray that people will open their hearts for little Zoe. She’s healthy! She’s walking and eating and active and will blend so well with a new family!

From the Reece’s Rainbow site:
Beautiful blonde hair and a glowing personality. She is healthy, with no heart condition. She is fully functional...walking, active, many words, able to eat and dress with minimal assistance, and an orphanage favorite.

She is facing the institution, please consider adopting Zoe!

More photos available, please inquire.

We have many children waiting in this same orphanage who can be adopted together. Children in this orphanage are not held much past the age of 4, so we need a family quickly.

I’m asking 3 things of you all, every reader…
1. Prayerfully consider if Zoe might be waiting for YOU specifically. Do you have a place in your family for her? You may not feel you have much to offer, but is a family not better than an institution for a 4-year-old??

2. Can you give just $21 to Zoe’s fund? If you are unable to adopt her yourself, can you share this minimal amount with the family who WILL come for her? There are so many families who desperately want to adopt but simply do not have the finances to do so. Can you help THEM if you’re not in a position to bring her to your home? You’ll see a Chip-In box in the right margin under Zoe’s button. Donations are tax deductible.

3. Will you post Zoe’s button on your blog or Facebook page, asking others these same questions? The code for the button is below and in the right margin.

Fighting for feeding

2010-03-12T05:47:00.001-08:00

Ok, so it’s not so much a “fight” but it has felt like it a little in the last couple days. If you didn’t see the post on Braska’s blog about yesterday’s feeding demo (and if you want things to make sense) you might want to start there first.

Today the goal was to talk to the contact at the school and Sue, a superb OTR/L with excellent feeding skills and experience. She was our OT for about 3 months at the end of the summer, right before Braska’s transition out of EI. She is wonderful, as a person, with Braska, and at what she knows as a professional. I wanted Braska to stay with her when starting school, since Sue works there as well as privately, but the school is set up so that each classroom has an OT who works with the kids in that room. Since Braska wasn’t in one of Sue’s rooms, we went with the OT in the room.

Let’s just say that has not worked out the best.

There’s a lot that could be said about that, but I’ll leave most of it alone except to mention that this is actually great timing. I was only becoming aware of some concerns within the last couple weeks, so a change now is great.

Sue didn’t work with Braska on feeding when she was our OT. This was at our request. At that point we were still under the impression that Braska’s issues were behavioral, for the most part, and so we weren’t doing focused feeding therapy at that point, trying not to “push her.” Oh what I wish we’d known then…

Anyway, the good news is, for right now it seems we will be able to make the changes needed to get Braska back with Sue and working specifically on feeding. We’ll be trying to make this work in Braska’s school schedule on the days Sue is there. But if that doesn’t work, we’ll possibly go early or something like that to work on the oral motor specifically. And if all else fails, we will see Sue on a private basis outside of school. In fact, depending on how receptive Braska is and how it goes initially, we may do both if we can handle it financially.

We have a lot of lost ground to make up. But I was so encouraged by the fact that Sue wants to work with her and is sure that it’s not “too late.” Her muscles can be trained and what behavioral habits have been learned are not too deep to relearn correctly.

We will also be developing a plan to includes Braska’s ST, who we really like a lot. Ann works so well with Braska and Braska responds well to her. This way they will be coming at the oral motor elements from different directions but working on much the same skills, used for different things.

I’m hopeful that things will be righted soon, and I’m glad to know that we do have good people available. Of course, I’m still frustrated that we were on a wrong path for what seems like such an important part of her young life, but I have to let that go.

If I could hang out in NICUs and tell parents in our position NOT to take kids off the bottle completely, even if it just means letting them take 5 or 10 cc with the bottle before tube feeding… oh how I wish we’d have had someone to clue us in… what a different picture we’d have now. But it doesn’t work that way. I can only help those who come behind us, and every child is different, but it’s worth sharing our experience so people can make a more informed decision.

Hopefully, over the next few weeks we’ll see some exciting things. I acknowledged to Sue that we are willing to take the risk of regression in oral intake to get things done right and help Braska to get where she needs to be in the end. In other words, we may have to take some steps back before taking steps forward. We’ve always been hesitant to have specific feeding therapies because Braska would then refuse to eat for days or weeks at a time after something new was presented in therapy. But now, I fully believe that we need to back up and do this right. Teach her the right way to use her mouth and tongue and all the parts around them. We need to help her eat properly and it won’t be such a difficult thing for her. THEN maybe she will want to eat as it gets less difficult because her oral motor skills are better. So if we must rely on the G-tube solely for a while, so be it. She’ll get her nutrition and we’ll start the journey to being rid of the tube eventually.

A journey I thought we started long ago, but we were following the wrong map.

***As I was proofing this, the school called. They are willing to check out the options, create a plan, and help us make some changes to get Braska the therapy she needs. The ball is rolling…I’m so glad for that.

****Oh my goodness. As soon as I posted this, the school called back. They already have discussed with appropriate people and we have a plan in place. Woo Hoo!!! Sue will be handling the oral motor part of Braska’s OT (30 mins a week) and the classroom OT will be handling the fine motor part (also 30 mins a week). I’m pleased with this and I hope that it works out as well as I expect it to! Yay!

Thank you, God, for presenting and then solving a problem I wasn’t even aware of…and in short order. Awesome!

Mommy report: Feeding demo/eval

2010-03-09T20:24:00.001-08:00

You may have seen over here that we were recently scheduled to do a demo for a feeding therapy seminar that was held nearby. Well that was today, and it was quite an experience. A good experience, and yet one that leads to frustration… let me explain.

Lori Overland, MS, CCC-SLP was the speaker, and the seminar was promoted by Leaps and Bounds, which is a therapy facility here. We were to fill in where there was a need for a child with problems moving food around and maintaining liquids in the mouth. What a good fit! I was anxious that Braska might not cooperate in a group setting, but we went ahead and said we’d do it.

We arrived a few minutes early, Braska got to meet Lori and play with her a bit while Lori did some visual eval and observed for a few specific things. She tried a couple skills with her and shared some initial thoughts. Immediately, she noted problems with Braska’s oral motor skill and strength. This might not be a shocker to some of you, but the difference is that she pointed out things that we’ve not had anyone else mention before, or at least recently. I had told her that we’d been led to believe that Braska’s issues were behavioral at this point, her refusal to eat being just that—refusing. We haven’t worked on oral motor skills in over 18 months with any real intention, either in therapy or in general. I always believed that since her speech is so good, and she can make all her sounds correctly, that her oral motor was not the biggest problem. She is able to take food in and swallow it with no problem, so I just operated on the idea that she could eat if she wanted. I know she can’t chew, she never has, so I figured we’d need specific work on that, but I wasn’t sure where to get it.

In less than 15 minutes of observing and working with Braska, she noted and explained numerous things that were “obvious” and pointed toward specific therapy needs. I was relieved to know that there was something that could be done to help her, but I was amazed that we’ve not heard this from other therapists who worked with her quite a while.

We put Braska in her feeding chair, and Lori began to do the demonstration for 65 or so OTs and SLPs who were in attendance. She tried a variety of things, like massage and vibration, to stimulate Braska’s mouth and face and prepare it for feeding. Braska did pretty well overall, and she accepted this interaction better than I would have expected. She didn’t like the alligator jiggler as much as she used to back in the day, but for the most part, she cooperated. She did not want to bite things when asked, like the chewy tube, but that wasn’t really a surprise.

Lori tried to work on the inside of her mouth, on her tongue and cheeks, but Braska was not really having that. Again, this isn’t new for her to avoid that type of thing. I fed her some yogurt while the whole group watched and commented or asked questions. Lori showed what things were indicating issues. The position of her jaw, the way she led with her tongue instead of her lip, the way the top lip stayed up instead of coming down to meet the spoon properly. She also noted things like how long it took Braska to swallow, I guess meaning that she had to work hard to get the food or liquid back there. She also offered her some water in a honey bear, but Braska was not really interested in that so much. She wouldn’t really open her mouth.

Braska is so finicky about who she will warm up to when it comes to working on feeding or around her mouth. She is very quick to shut down around several therapists we’ve had, and it was amazing to me to see how well she did with Lori. I really wish she didn’t live and practice in Connecticut!

We are proud of how Braska has done with her speech and language. She does extremely well for a child her age with DS in the area of speech and language. But Lori pointed out that, though she is speaking very well, she could be even MORE clear and proper in her speech if we could work on these oral motor concerns.

Lori also felt that some of her feeding issues, at least currently, could be due to her ears and enlarged tonsils and adenoids(T&A). I’ve heard from other parents who found that after their child had the T&A removed due to sleep apnea concerns their child also showed improvement in her feeding issues also. Lori felt due to Braska’s noise respiration and apneic episodes that she’s having more frequently that she probably would show progress after the T&A were removed. Braska is scheduled for a sleep study on 3/23 at which time the decision will be made about if they will take out her T&A at the same time that they put in her ear tubes. The combination of these things will likely bring positive results to the feeding situation. She also noted that it might be related to her tendency to sit with her head back, chin up, so frequently. This could possibly be a position that allows for the most open airway. We’ll see what the sleep study shows and go from there, but it’s encouraging to think that we might be on to something that could really make a difference.

As we left, I was happy that we’d found a direction to take to help Braska, and at the same time, I was really kind of mad that we’ve gone this long without this being stressed as important. How have we had all these professionals in and out of our home and involved in her transition and evaluations and no one brought up that she needed focused oral motor therapy?? Now that we’re out of First Steps (EI), this will be all on us to take care of. Insurance doesn’t cover it unless there is a medical diagnosis, and I don’t know that we’ll have a valid one right now. So if we seek private therapy to correct the bad habits and learn the proper ones, it will all be out of pocket. If that’s what we need to do, we will do it. Money will not be the reason she doesn’t learn to eat properly. I’m just frustrated that we’ve gone this long operating on flawed assumptions.

Where do we go from here? Well, we start tomorrow by talking to the school and making some changes to ensure that the right people are working with her. The good news is that there is someone who knows what to do and who Braska likes very well. The bad news is that there is a policy in place that makes it hard for us to be able to have her work with Braska. But I think we can work around it or run right through it. If all else fails, we can see this person outside of school in her private practice, and that’s what we’ll do if we need to. That’s where we’ll start… it’s going to be a long road, but at least we now know where we’re headed.

Braska: Me ‘n Jack: Heart buddies

2010-03-07T16:08:00.001-08:00

Not every kid has the kind of cool toys we do at my house. When Jack was over to play this week, he found my s’tef-a-scop. Mommy and Daddy used to use it when they put my tube in, back when it had to go in my nose down to my tummy for my milk.
Both of us had our hearts fixed when we were little babies, we have seen lots of doctors, and they always have these things and want to listen to our insides. So we know just what to do with them.

(Mommy note: Jack was SO impressive with this. This is not a fake stethoscope. The ear pieces are very stiff, but he managed to get them wide enough to get around his head and in his ears correctly. Then he picked up the other end and placed it perfectly on her chest and then waited. Like he was actually listening… and she let him, not seeming the least bit surprised. So cool.)

Exciting news (almost) in our family

2010-03-05T19:01:00.001-08:00

Jack’s going to have a little sister!!! Woo hoo! Julie and Allan have committed to and started the process of adopting little Dasha from Eastern Europe through Reece’s Rainbow! Her name will be Dashlyn Belle, which I think is SO neat. This has been on Julie’s heart for some time, and it is now so very neat to see them finally able to move forward!

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Be sure to visit their adoption blog here (put it in your reader, Reader users), grab the button above to add to your blog or your Facebook page, and spread the word that another little one has a Mommy and Daddy on their way to get her soon! Of course, if you’d like to donate to the costs of bringing her home, they’d more than appreciate that as well.

I’m kind of living my adoption dreams vicariously through my friends, and this family is practically family to us, so I’m really happy for them and can’t wait to get to see this little doll smile and play with my girls as they all gang up on Jack. She’ll be Braska’s new best girlfriend. Can’t wait!

Congrats Julie and the rest of the fam…and many prayers for a smooth process!

Braska: Jack’s gettin’ a sister!!!

2010-03-05T19:00:00.001-08:00

Guess what Mommy told me??? Jack’s gonna get a new sister! She’s already born, so she’s not in Miss Julie’s tummy, but she lives far away, so they have to go get her and bring her home.

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We are really happy about this because I’m gonna get a new friend to see ALL the time, just like when I get to see Jack ALL the time! We’re going to have SO much fun! Me and KiKi and Dashlyn are gonna do all kinds of fun things together, and we’ll let Jack play with us too, of course. But think of how cute us three girls are gonna be in all our pink! Miss Julie likes pink, so we are going to make sure Dashlyn has lots of it, don’t you worry. Me and KiKi have plenty to share. Mommy even helped make Dashlyn’s blog pink, so you can go see it if you want.

Mommy says it will be a while before she gets to come to visit our house because they have to do a lot of work and go a long way to get her, but I hope she comes soon!

Braska: Me ‘n Jack: Testing the playroom

2010-03-05T09:35:00.001-08:00

Today Jack is at my house playing while his Mommy and Daddy go to a meeting that’s important. I’ll tell you some about it soon… it’s great!

So while Jack’s here, we are playing in my new playroom, Mommy says testing it out to see if it’s fun for all three of us.

We have been having a good time so far, playing with everything, doing some dancing, and laughing and just being silly. Then we decided we’d take a break and get a snack while KiKi went to nap early. She was kind of grouchy and tired, so Mommy let her to go sleep.

Do you see something neat in that picture? I mean, Jack’s always the coolest thing, but look at me. I’m holding my spoon for “scoop and bite” which is what I’ve been working on so I don’t need Mommy’s help so much. I like to do it, but sometimes I can’t quite get it in the right place. But yogurt is my favorite, so I try really hard!

I gotta go play more now. Back to the playroom!

Past Pics: Pretty

2010-02-28T17:08:00.001-08:00

I’m backing up my computer tonight, doing a little overhaul. I came across a disk that wasn’t labeled. This was all that was on it. Three pictures. Braska just before she turned 1. Priceless.

Braska: Happy Heart Day to Me! 3 Years!!

2010-02-28T08:04:00.001-08:00

Can you believe it’s been 3 whole years since I had my heart fixed?? That’s right! Today is my Happy Heart Day!

Here’s where you can go back and see the story about all of it if you want to… I have some little friends who will be having their hearts fixed soon, so their mommies sometimes like to see how I did when Dr. F fixed mine. And Mommy and Daddy like to go back and see how little and cute I was, and what a good girl I was in the hospital, too.

Every year we look at this picture, even though it’s scary sometimes for other people, for me and Mommy and Daddy, it helps us remember how strong I am and how much God has helped me.

And look at me now!!!!

Mommy report: ENT visit

2010-02-23T21:46:00.001-08:00

What’s new, you ask??

You might have seen on the Twitter gadget on my blog that we had several things to talk to the ENT about yesterday when Braska saw him. I took my handy dandy fancy clipboard with my questions ready.

We addressed her sleep issues, waking frequently, and apneic episodes that have been getting worse lately.

We’re now waiting for the sleep center to call and schedule her appointment. Depending on what is found, she may be having tonsils and adenoids removed.

We addressed her hearing issues, the fact that she’s been getting lazy with her speech, and seems to show that she’s not hearing as well as she has in the past.

After the oh-so-fun microscopic exam of her ears, she has fluid again, 4th time in 3 months, and we’ll be scheduling surgery to insert tubes after the results of the sleep study are in. If we need to do the tonsillectomy, we’ll combine the procedure with her tube placement to avoid anesthesia twice. Most likely her hearing issues are related to the fluid distorting what used to be clear to her.

We addressed her incessant teeth-grinding, letting him know that it happens when she has ear issues, and it lessens or stops when her ears are clear.

After the typical “kids just grind their teeth,” he did agree that it will likely help to have the fluid situation taken care of via the tube placement.

So that’s where we stand. We’ll hopefully get the sleep study scheduled in the next few weeks, then after those results are in, we’ll set up the tubes procedure and whatever additional things need to be done at the same time under anesthesia… possibly even dental work that is soon due.

There. You’re up to date. Thanks for asking!

Possibly a reason to watch NASCAR??

2010-02-21T06:01:00.001-08:00

I’m not a NASCAR fan. I don’t know anything about it other than cars drive around in a circle a million times and people seem to like it. Personally, I don’t see how that could be exciting, but whatever…if it revs your engine, that’s cool.

BUT—Kelli posted about this interesting tidbit on her blog, Living Life with E’s. (If you haven’t been to see her, go visit. She’s got some cuties for sure!) From Kelli’s post…

NASCAR is holding a contest for a special design car to appear in the 2010 NASCAR Sprint All-Star Race. A car design promoting Down Syndrome Awareness has been submitted. How great would that be to see this car speed around the track in front of thousands of people!

I clipped out some pics of the car, which are below. Someone went to some effort to put this together, and the kiddo on the roof is pretty cute, which never hurts. You DO NOT need a login to vote, and you can vote here every day for the next 8 days. Wouldn’t it be kinda cool if we could get the “DS gang” out in force to vote this into reality! Make it a favorite and vote when you log in each morning… not a lot of effort but a fun and effective way to spread awareness.

Me ‘n Jack: KiKi’s party

2010-02-13T17:27:00.001-08:00

This weekend me and KiKi are at Grammy’s house while Daddy plays games with his friends at our house and Mommy’s getting some quiet time by herself. So here’s some pictures from last week to hold you over til I get home.

Jack and his mommy and his sister Madelyn came to KiKi’s party. We had almost the same clothes on, and we didn’t even try to do it!

Anyone got $50,000?

2010-02-11T17:12:00.000-08:00

No? Well then, we should all be going here to vote for Buddy Cruise, Inc. and this chance at a new documentary about people with Down syndrome. Wouldn’t it be nice to have a new 30-minute film out there showing it like it is now, with personal stories, instead of all the old info that so many of us have received in our time in this “club”?

It’s super simple, go over, vote for the Good Idea—yes it takes a log in, but it’s not asking for personal info or anything—and let’s help them get in the top 10!

Thanks to Michelle for her Tweet about this!

Connecting the Rainbow

2010-02-11T14:13:00.001-08:00

I’ve blogged about Reece’s Rainbow often. (Though not recently, I realize now. Bad me!) But there is now a new venture called Connecting the Rainbow that is working with families who choose to keep their little ones with DS in countries that don’t have any support system for them. The goal, of course, would be a time when there is no need for international adoptions because the parents are keeping their little ones with disabilities and had a good support system in the society to care for them.

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Connecting the Rainbow is focusing on Bulgaria right now, and they have a very cool opportunity to help right now. Beyond Play is a therapeutic toy company that has agreed to give 15% of all items purchased from CTR’s wish list back to CTR. It’s a great chance to buy a toy for their cause, or for yourself, and contribute to CTR at the same time. I am so privileged to have come to know via blogs, forums, and email the friends who are making this venture happen, and they are truly wonderful, caring people. These kids are their focus, and educating their families is going to be so very rewarding.

They also have an additional wish list you can check out.

Many of these items are very inexpensive and will be an excellent gift to these families who already trying to go against “the norm” as they choose to raise their kids at home.

Please take time to glance at the items and see if there’s something you could send to Bulgaria for these families. You don’t have to mail it overseas yourself, don’t worry!

Early Intervention: Parent-centered team

2010-02-10T20:15:00.001-08:00

Even though we are just outside of the Early Intervention system, since Braska turned 3 in November, I still get a lot of contacts and questions about the differences in EI services in different states and even other counties in Missouri. Ria has been communicating with someone about this and posted their conversation on her blog today. It sounds like this mom that Ria has been talking to has been put into the new model for EI that some places are transitioning to. She asked for some input into our experiences.

In St. Louis County, next door to ours, the First Steps Program has been trying out a new parent-centered team approach with new parents and transferring families. From what I learned via word of mouth from a few in the administrative side of the system, St. Louis County agreed to be part of a testing or trial program with this new approach. So far, I’ve not heard many families who are pleased with it, unfortunately.

To contrast the two, let me first summarize our experience: Braska had in-home therapies with First Steps from the time we moved to Missouri when she was 18 months old. She had weekly speech therapy (ST), occupational/feeding therapy (OT), physical therapy (PT), and she also was seen by a nutritionist/feeding specialist due to her G-tube and difficulty gaining weight. We made some adjustments to these over the past couple years and changed OT to every other week for a while, slowed ST to every other week for her last 6 months in EI since she was so self-motivated and ahead of the curve in her speech skills, we had PT at Braska’s school for a while, and we changed the schedule for the nutritionist as well. But even in all this, we still had each provider of their particular specialty coming to treat Braska hands-on.

When Braska turned 2, she went to what I called “pre-preschool” for two hours each Monday. The teacher was a developmental therapist (DT) and it was a great experience. Braska loved it, she learned a lot, and I firmly believe it helped her with the transition to preschool when she turned 3. This was an added benefit to the home-based therapies, but I wouldn’t want to have it be the only thing. I wouldn’t have wanted a group setting with one therapist to be her only treatment each week. In some cases, I’m told that’s happening.

The guru for what is called the “team approach” around here is Robin McWilliam, Ph.D. (He has a blog here if you’re interested.) He’s widely known in the field of EI for promoting what he calls a PSP or primary service provider model. My paraphrase of the model, combining what I’ve read and what I’ve heard from parents who have been in it, goes like this… There is a team of providers—PT, OT, DT, ST, etc.—who meet regularly to discuss little Suzy. They are all involved in working on her IFSP goals and they are all familiar with her. BUT not all of them have met her, and in many cases they may not.

The feature of this model, also called the transdisciplinary model, is that there is one person identified as the “primary service provider (PSP)” and that person is who sees Suzy in the home regularly. That person conveys all the instructions and thoughts or concerns from the team. The PSP is usually the therapist who deals with the child’s most delayed area, as far as I can tell. For instance, if Suzy is 2 and she walks well and eats well and can scribble, but she doesn’t use words yet, she will probably have the ST be her PSP. What that means is that the ST will come to the house weekly or biweekly and work with Suzy, but she will not only do ST but will also address concerns in PT or OT areas also. The PSP will research and discuss with the other team members issues that come up and she will then report back to the parent. But all concerns about any modality will go through the PSP—the ST in this scenario.

To me, it’s clear why this approach is frustrating for a parent. What if my child has two areas that are in great need of work? What kind of delay in answers must come when a parent must ask an ST about the inversion of her child’s ankles and wait for the ST to talk to the PT and then get back to the parent? Wouldn’t it always be wiser for the provider who is offering the advice to be the one actually seeing and working with the child? From what I’ve been told, parents receive a lot of handouts and information for where to research and find their own answers for issues that might come up. This is better than nothing, maybe, but it still pales in comparison to the idea of a person, trained in THAT field, observing the child and discussing the plan with you.

I’m told by those who know these things that being in this trial group is not mandatory in St. Louis County, though they don’t tell you that, and that you can opt out of this team approach. But last I heard, they were putting 1 out of 4 new families, either by birth or by transfer, into the new model. And there have been quite a few unhappy families.

We’re just one county over, and we did not participate in this model. I’m thankful for that, though I’m told that all of Missouri may end up going this route soon if some people in high places have their way. We’ll have to see. I hope that’s not the case.

I can’t imagine having to deal with one person about all our issues…G-tube, no/limited oral feeding, not walking, and very delayed fine motor. I can’t imagine the strain on any therapist who would have been put in the position of our PSP. I can tell you that I wouldn’t have been fun to be around much after about a week in that system. It just doesn’t seem like the best interest of the child is in the forefront in this system. Maybe some like it, maybe some have had success, but for a child with multiple delays and challenges, it just doesn’t seem to make sense.

Have you had experience with this new approach? Thoughts?

Sing along, Take 2

2010-02-08T05:56:00.001-08:00

Some of you could see my videos from Saturday, but some couldn't get them to work. So I'll try a different way to show you. Can you see it now??
(Movie clip below for Reader readers...)

Make video montages at www.OneTrueMedia.com

(Mommy note: It's not so much "singing" as toddler rapping of sorts, but the fact that she can string several words together on command, and often without any prompting at all...that's exciting for us. And to be fair to Braska, this was late in the evening, and her enunciation always gets a little lazy as she gets tired... but it's still neat to hear!)

Lovely Lera

2010-02-02T17:01:00.001-08:00

(Taken from Bethany’s blog.)

She is an orphan living in a baby home in St. Petersburg, Russia. The exact same city from which (Bethany’s daughter) Nika came.

Lera needs a family ... like, yesterday. She had a family committed to adopt her, but that fell through and now she needs another family.

But time is not on her side. At age four, orphans are typically transferred out of baby homes. Lera is 4 1/2 years old ... and by the grace of God, she is still at the baby home.

She has an $8,605 grant in her name through Reece's Rainbow. This is a HUGE start for any adoptive family. She also has another $2,000 that was raised for her by the first family that planned to adopt her -- they want to give that money to her new family.

Could you be her family?

Lera has Down syndrome. She is reported to be very high functioning and by the looks of her dolly, she is engaged in pretend play. She is reported to have a heart murmur, but no other health concerns.

So ... what do you say? Could you be her family?

For more information, please email Andrea at Reece's Rainbow. Please?!

One CUUUTE baby boy!!

2010-01-26T14:25:00.000-08:00

A couple weeks ago, my friend LC’s new little brother, Jace, came to my house. He is SOO CUUUUUTE! I love things that are cuuute. That’s how I say it, too. Cuuuuute!

Jace was coming to see my heart doctor that I’m sharing with him and LC, Dr J. He’s really good, and Jace needs a good guy, so I thought he would like Dr. J alot. Dr. J is going to have Dr. H help Jace too, and then he’s gonna be all fixed up!

After Jace had his appointment, he and his mommy Miss Courtney stopped by my house to say hi. We told Miss Julie and Jack that they were there, so they came by to see them, too!

Jace was kind of hungry, so Miss Julie gave him some milk. He doesn’t drink much because he gets tired when he drinks. I used to do that, too, before my heart got all fixed.

Jack checked out Miss Courtney.

She’s really super cool, and she always plays with us when she visits. I hope I get to go to her house someday, because I bet it is SO fun there!

We were sad that we didn’t get to see LC that day, but she was having a blast with her friend Alayna. Maybe I’ll get to play with them both when I go visit. I’ll have to tell Mommy to get movin’ on that!

Psssst. Miss Courtney, maybe I’ll sneak Mommy’s phone and send you a text.

Hanging out with my friends

2010-01-25T18:24:00.001-08:00

This week I’m sick, so I can’t play with my friends. But I found some pictures that I forgot to show you of some fun times we had lately.

Here’s me and Jack watching Veggie Tales on Mommy’s computer. Kinlee was climbing up on us but she fell down right before Mommy took the picture.

Then another day I was showing Jack my favorite present from Grandma C that I got for Christmas.

You put the letters in the little sun and push and it sings a little song about the letter. Like this… R says rrrrrr. R says rrrrr. Every letter makes a sound, R says rrrrr. I know the whole song, but I like to push them alot of times before the song is over. Mommy makes me go to a different toy when I do that, though.

Then on a different day, we left school early to go see Sophie and her family at the place where we see my doctors. It’s called Children’s. They are the best, I think. Sophie has some of the same doctors I do, so she was seeing them that day.

Me and Jack and Sophie had alot to talk about.

Then we let our brothers and sisters in the picture with us. Except Jack’s weren’t there, but we let him share ours.

There’s another friend I got to see, too, but you’ll have to wait til tomorrow to see who it is!

…to you!!!

2009-12-31T20:37:00.001-08:00

Christmas E

2009-12-30T19:45:00.001-08:00

The day before Christmas is my favorite, I think. I love letters, and everyone kept saying that day was Christmas E Day. Isn’t it cool that Christmas gets its own letter E?? Mommy did tell me that it didn’t mean the same thing, that its suppose to have a V in there too, but I just like the E by itself.

We got to open a present on Christmas E after dinner. Miss Linda is a really nice lady from Daddy’s work. Sometimes me and KiKi go to her house to see her and Mr. Gary. And she got us some Christmas presents! I think that’s super nice!

First I opened mine, and Daddy helped me.

The box had fishies on it, so I was happy. Then Daddy told me it was called uh-qwar-ee-um.

It’s a light and little fishies go around and around. It’s the BEST!!!

There was someone else nice at work who left a card and some money on Daddy’s desk for him to get us a present, but we don’t know who did it. It was a secret. So Mommy and Daddy got both of us sisters some things to put on our ears and hear our movies. This way we can listen to our shows even when they’re listening to other stuff.

First I tried them on. Mommy put a little movie on her computer.

I could hear the music!!

I think I’m gonna like these things!

Then, before we went to bed, Daddy read us the first Christmas story about when Jesus was born.

Fuzzy Christmas Jammies!

2009-12-28T09:10:00.000-08:00

Here’s a bunch more pictures of me and KiKi and Jack from when we tried on our matching p-jammies that Miss Julie got for us… remember they all get bigger if you click on them.


“Hey, can I read that with you??”

”Watch it, girlie.”
(Make sure you click on the pic below to see Jack’s face!)

Ohhhhhh…jingle bells!

2009-12-27T12:52:00.001-08:00

I’ve got a bunch of pictures to show you from our really fun Christmas times, but Mommy’s busy cleaning up so she can’t help me do pictures right now. So here’s a little song we did last night that you can listen to until the pictures are ready.

We sing it every day at school, and it’s my favorite! I ask Mommy to sing it sometimes in the car and sometimes before bed and sometimes when I’m eating and sometimes when I’m in the bath. It’s a good song! Oh, and Mommy said to tell you that I kinda get silly and loud, so get ready to cover your ears! But sing along!!!

No school today

2009-12-22T20:22:00.001-08:00

I like school alot, and when Mommy gets me up in the morning I always tell her “Sa-kool tuh-day!” And today was P-Jammie Day!! But I didn’t feel very good when I got up. I tried to tell Mommy what was wrong but she didn’t understand. So I just laid on the couch and cried. She knew something was wrong, but she didn’t know what it was.

So we went to pick Daddy up at work so he could come to the doctor with us and help with KiKi. Doctor told us that I have a bad ear infection in my right ear. (My first one ever in my life!!)And my throat is really red and spotty. Doctor stuck a thing in my throat—that I did NOT like—and it told her that I didn’t have something called “strep.”

On the way home, I went right to sleep. Mommy snuck a picture with her phone.

I got new medicine, so I hope it makes me feel better. I don’t want to be sick for Christmas!

Christmas dress-up, part 2

2009-12-21T15:38:00.000-08:00

This is the dress I call “shiny” and I like to look at it. It was another nice present from some very special friends, Miss K, J, and J. Daddy thought I looked very pretty when he came to see me dressed.

The first one is Mommy’s favorite one. And there were bunches of pictures, but these were the ones I wanted to show you.

Christmas dress-up, part 1

2009-12-20T21:32:00.001-08:00

I’ve got so many cute things to wear for Christmas, so we’ve been trying to take pictures to make sure we remember them all. (Some of these are ‘specially for Miss Karol, but we’ll let all of you see, too.)

Mommy keeps trying to take pictures of me and KiKi together, but we don’t ever look at the camera at the same time. That makes Mommy growl sometimes. But look how cute we are!

This is a cute sweater that somebody gave me, and there’s little Christmas things on my shirt underneath the sweater too.

[Oh, and the blue things on my legs are my ther-uh-togs (Theratogs). Miss J at school helps me learn to walk and get stronger, and she’s letting me use these. They help me ALOT! I’m walking better with my walking toy all the time, and sometimes I try to do a step or two myself. It’s hard work though!!]

This was a present from Miss Karol… isn’t it so cute! That’s what I always say when Mommy gets my clothes out…”Cute!”

Lily’s Auction

2009-12-08T12:22:00.001-08:00

Michelle and Brian at The Zoromski Chronicles are in the process of adopting Lily, from Eastern Europe, who they found via Reece’s Rainbow. Their little Ruby is one of my favorite little blog princesses, along with brother Braden and sister Karly, and I was so excited to see that the were taking this big step to bring another princess home to add to their family.

They are hosting a blog auction at Lily’s blog, and there’s some good stuff there! They’re going to even get the things to the winners by Christmas. So go take a peek and see if there’s not something you could bid on and get a great deal and help a very cool family bring a precious girl home quickly!

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Reminder to readers...

2009-11-28T09:55:00.000-08:00

In case any of you missed it, what few of you are on this blog as opposed to my others.... these are re-posts from our main blogs, not all the posts from there make it here. So if you're interested in more about the girls, visit their blogs directly. Posts are more frequent there! :o) Thanks!

Braska
Kinlee
RK

3 birthdays for 3! #3

2009-11-27T14:51:00.001-08:00

Yesterday was Thanksgiving Day. I know that because it’s Mommy’s favorite day, so she always talks about it coming right before we get ready for Christmas.

But yesterday was also my birthday… again!!! Remember I told you I had 3 birthdays for turning 3?? This was #3, and it was with all my family from Mommy’s side. We all went to Auntie Skye and Uncle Jody’s house for our big turkey dinner, and we also got to have a little bit of birthday party too.

Here’s everyone who was there…
Uncle Patrick and Auntie Rachel (She’s Mommy’s sister.)

Uncle Jody (Mommy’s brother) and Auntie Skye

Papa, Grammy, Auntie Julia, Uncle Ryan, and Auntie Joy. (Mommy’s mommy and daddy and other sisters and brother)

And Daddy and Mommy were there too. Guess you probably figured that out already… KiKi was napping, so she didn’t get in the picture with us.

Everyone helped me blow out my candle since I’m not so strong to do it by myself.

Then I opened a present from Grammy and Papa. First I read the card on top.

Then I opened the present. Daddy helped, but I pulled the paper some.

It was a book about kids in the Bible. I love Bible stories!

And there were two puzzles in there. One of them had animals on it. This one used to be Mommy’s. She was so surprised to see it she kept saying, “Wow!”

Here’s the back of the puzzle… it has Mommy’s name on it and the guy who gave it to her when she had a birthday to turn 1.

And Uncle Jody and Auntie Skye gave me this table so I can sit and read books and color. I tried it out as soon as I got home. My chair from Miss Karen fits just right!

Thank you to everyone who made all 3 birthdays so much fun! I can’t wait til next year! I’ll get 4 birthdays for 4! Oh, wait… Mommy says it doesn’t always work that way. I guess I’ll wait and see.

Hope everyone had a fun Thanksgiving!