Saturday, October 30, 2010

31 for 21: A bit more about feeding Braska

There are a couple more things I wanted to touch on, and I thought that Cate’s question regarding this post was an excellent place to start…

I totally hear you on patience. It's hard to go at someone else's pace. Do you have something to do while she's eating? I read your post thinking that it would be good knitting time. That's my choice for something that makes me feel like I'm not just waiting, but I'm still engaged and paying attention. (Thanks for the input and the question, Cate!)

One of the most difficult parts for me right now IS the waiting, but it’s a different waiting. Braska can feed herself with a spoon, but it’s very slow and she will only do one or two (rarely) bites at a time. And remember, we’re talking purees here… yogurt, mashed potatoes, blended meals…things that fall off the little spoon easily.

So there is a lot of guiding, assisting with proper hand position so she doesn’t drop the spoon, helping her get the spoon back IN the little bowl, etc.

One more clarification… at this stage, I do NOT blame the DS for her feeding issues. I don’t consider this a “DS thing.” She is so far past even the delays that can be typical-to-extreme for DS that I now don’t even give DS the credit for her issues. Yes, it was initially the heart defect that interrupted feeding progress, and yes, her very low tone plays a significant part, but I believe, and some of her caregivers agree, that at this stage, she is dealing with a combination of issues that outweigh the “kids with DS have feeding issues sometimes” philosophy.

Working with Braska on feeding is a very active task, yet with a lot of breaks, though they are short.

For instance…if she starts out with a blended meal of meat and veggies, she will usually—when prompted a couple of times—pick up the spoon and put it to her mouth. She doesn’t always get it in her mouth fully, but she’s getting better. But because her fine motor/hand strength is SO lacking, she has trouble even managing the spoon correctly and then moving her wrist around to get it in the right place. This is really work for her.

So after one bite, she will leave the spoon in the bowl. If it were up to her, she’d sit there for hours before she’d attempt another bite. Hungry or not… and she really doesn’t even register hunger in a realistic manner anyway. So I can prompt her to try again, “scoop and bite” as we call it, and SOMETIMES she will do it again. Mostly she will just look away and ignore me.

I generally will take over for a bit, feeding her, and she accepts the food relatively well. We wait several seconds, if not 25 or 30 sometimes, between bites. I reload the spoon right away and hold it out in front of her, ready for her to move toward it and open her mouth. But there’s still the waiting. She needs the time to clear her mouth and be ready for the next one. I offer the next bite, and she will either take it or she will say, “Nofankyou” in her oh-so-polite-but-not-budging manner. Then we either try another something, like offer a bite of yogurt instead of her “entree” food, OR we attempt a drink.

Drinking is a more difficult situation. She does not like to take sips. And when she does drink, that’s all it is. It’s very much an art to getting the cup held/tipped in just the right manner so the milk is at the rim of the cup, because when she opens, you have about 0.0003 seconds to get something in there before she closes again. Occasionally she will be more willing to accept a little, but mostly she prefers not to mess with a drink at all.

And yes, we’ve tried every cup, bottle, straw contraption, and other possibility out there… I’ve got boxes of barely-used items to show for it.

Once she tires and won’t cooperate to assist with the meal any longer, I take over and feed her the rest. This doesn’t mean that she’s suddenly happy, like she got her way not having to feed herself, she STILL doesn’t want to eat. But she is getting much better about accepting food by mouth when I feed her, and her pace is picking up.

So you can get a picture of how it goes. It’s not really feasible to DO anything in the midst of the process because I’m always doing something even if there are little tiny pauses. She is not in a place where I can be near but not involved.

Very rarely, in the morning, when she’s eating yogurt—her favorite thing, if there is such a thing—she will feed herself 6 or 7 bites over several minutes while I’m preparing Kinlee’s breakfast. But it will always come to the point where she just won’t/can’t continue, so I help her finish.

Now let me be clear about something important… This process I describe is frustrating and hard, it’s taxing on her and on me, but we are FAR ahead of where we started, and though the going is slow—VERY slow—we ARE…SHE is… making progress, and I’m very glad about that.

But I hope this helps you get a picture…where she is on the spectrum of “feeding issues.” Many kids have problems with feeding, and the issues vary greatly, but when someone says to me, “Oh, I get it, feeding is hard. My kid will only eat grilled cheese, spaghetti, fruit, or crackers, and just drinks milk all the time,” I understand the frustration, but I have to chuckle a little inside, because we are still YEARS from that level. She still does not know how to chew. Period.

Each challenge for each kid is real, it’s a hill to overcome. In this particular area, our hill is just really long and steep.

But she’ll get there… if I can just hang on for the ride.

Wednesday, October 27, 2010

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

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…


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!

A busy bee day

I gotta go to bed, but here’s a quick peek at what we did today.

First I got dressed for school.  I put on different stuff than usual so I could put my bumblebee dress on at school easier than changing all my clothes.  Everyone at school liked my outfit AND my bumblebee dress, too!

(This is the look I give Mommy most of the time when she takes pictures.  She just wants me to look and smile. But I get her every time. It’s what the cool kids do.)

Then I got down on the floor before we left for school and looked at my book by the mirror.  It makes TWO books when you do it that way!

Then we went to school. Mommy came back to school early today, and we put on my bumblebee dress and hat for my teachers and friends to see.  But I only got to stay a few minutes because I had to go see Miss Sue.  Mommy calls it “feeding therapy” but I just think it’s like a snack that I have to work really hard for.

After school, we went to a place with a playground so we could have a little party for Jack’s birthday.  It was fun with me and KiKi and Jack.  We climbed and ran around.  Jack could do a magic trick where he stuck his foot WAY up and then got up on top of us.  I don’t know how he did it!  He is SO strong!  See his foot way up there??

When we were done playing, we had some ice cream.  (I really like ice cream!  It’s one of my new favorite things!)  Then we took a couple of pictures before we went home. 

Jack: Braska, you’re silly.  You never look when your Mommy says to say, “Cheese!”  You’re supposed to smile like this…

Braska: I give up.  Someone just take the picture so we can go.  Hip Hip Hooray.

After we slept on the way home (and after KiKi got sick all over her car seat and her clothes), we felt better and played for the rest of the day.

Happy Birthday, Jackson! See ya tomorrow for your Day After Party!

Wednesday, October 13, 2010

31 for 21: More about eyes

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 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!

Friday, October 8, 2010

31 for 21: Not what you want to see on the floor.

While dressing the girls just now, I turned around to get Kinlee's shoes and look what greeted me in the middle of the carpet.

Pardon the phone pic. Camera is broken. And I did rescue it from the floor before taking a picture.

If you are not familiar, that is a Mic-Key button. AKA g-button or g-tube generically. That is how Braska receives 95% of her nutriton. And for those in the know, I am sure you noticed that the balloon is not broken. Nice. It works best when it is NOT in the middle of the floor. The feedings go better when it is actually in her belly.

So a new one has been placed. Though it took somewhat more force than usual. (Insert nauseous look here.) But we are back in business.

If anyone has any questions about buttons or feeding or the fun or a g-tube (They actually kind of rock in my book! ), this is a great time to ask.

Thursday, September 23, 2010

Mommy report: Skill surprises

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


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!!

Sunday, August 1, 2010

How we live: House tour, part 1

Curious. Snoop. Nosey. Maybe so.

I admit that I like to know how people live. What they do. Where they go. Just normal stuff through the day. I’m curious about these things. Not like in a creepy kind of way, but I’m a people watcher. I like public places partially for the ability to just observe people.

I’m the one who always checks out the background of other bloggers’ pictures, just trying to get a peek at their house, or their office. I’m just curious like that. It makes me feel like I know a person better to know a bit about their house.

So to start off what I hope will be a little string of posts… ahem, hint hint…I’ll share where we live. Along with a bit of commentary of some interesting (?) things that I only noticed when I looked at the pictures after I uploaded them.

**Remember, you can click on the pictures to make them bigger.**

Here’s our house. All 800ish square feet of the main floor. 3 bedrooms, 1 bath. Kitchen, living room. That’s it. There is a partially finished basement, which is all M’s domain.

Wow. I still am amazed at how well we do in so much less space than we had before. With only 2.1 in our family back then.
We generally enter our house from the garage. (We are big believers in parking in a garage. I don’t understand people who don’t/can’t park in their garage… that’s what it’s for. )

Entering from the garage, this is the view. The kitchen. It’s a tight fit to get in due to the basement door on the left and the sliding door to the deck on the right, but once you squeeze past into the kitchen, it’s not too bad.

Note the crazy letter-covered fridge. I always swore my fridge would remain tidy. And I still try. But alas. There’s the oft present bib hanging from the cabinet handle, and there’s freshly-microwaved tea on the counter waiting for it’s finishing touches.

This is the view back from the other doorway to the kitchen. The garage door is on the far right end.

The grill is out on the deck. It’s handy. Yet we rarely use it. I could grill out every day. But it really only gets used if we have company. We have a good area outside, though the covered deck is rickety and not safe for the girls. But still… Unfortunately, our neighbor has a bar in his shed—you can also see the shed past the grill—and it is very popular with his friends. VERY popular. So it’s not really the most family-friendly environment. Anyone want to donate a privacy fence?

Here’s some of the deck… this table used to be by our pool back in Champaign. It’s used about once or twice a year now. Kind of sad. Especially since it is our only table and chairs…

The deck isn’t usually this crowded with the little chairs and the slide and a fan, but it was supposed to rain, so I quickly collected everything up under the covered area instead of putting it back where it goes in the garage.

This is the backyard. The deck is to the left of the picture. The girls’ swing and Daddy’s hammock under the big tree. There’s room for a pool on the left side of the yard…but not sure we’ll do that again.

This is the kitchen waiting room. Or that’s what I call it. This is the “eat in” area, except that we don’t eat in here. The girls do. I sometimes eat while I’m feeding them. That’s about it. The little table and chairs is the snack area for the girls.

That little oak thing on the wall in the corner came with the house. I am a little surprised I’ve never taken it down. But I’m more surprised that there’s a stuffed panda bear in a decorative metal basket that is sitting on the shelf—like the bear is in a shiny cage—and it’s been sitting there since we moved in. Really sad.

And the bookshelf to the left is being used as extended pantry/countertop space. The bottom two shelves are covered with a “curtain” of pillowcases. They were cheap. And no, they’ve not been previously slept on.

If you could see the white board calendar clearly you’d see that the calendar part says January 2010.

But wow, how glad I am that we put that hole in the wall. It makes such a huge difference in the way things feel… if you weren’t around 2 years ago, here’s how it used to look.

Here’s the other side of the new opening. We recently rearranged a little, after I cleaned the carpets last week, and now the girls have a new place to climb and watch Mommy work when they’re gated out of the kitchen. This is the view from the front window. Climbing in progress.

On either side of the opening between the living room and the kitchen are about the only pieces of wall art, other than the great big picture blanket you’ll see below, that we have in our entire house. I’ve just not ever managed to get the decorating thing together in the two years we’ve lived here.

On the right side is the cross-stitch that M used to propose to me. (Story here if you’re interested) On the left side is our first professional family picture—and the ONLY one we’ve had, now that I think of it—which was done when Braska was 6 months old.

This is the view from the kitchen into the living room.
The TV is to the left of this picture. The front door is just to the left of the window behind the curtains. The furniture in plaid was given to us by my generous in-laws and the glider/ottoman was a gift for Braska’s nursery from our very dear more-family-than-friend Miss Karen.

The picture blanket is really neat to have. It was a present from M back in March 07 (though I didn’t actually send the pic in to have the blanket made until September 07). The picture is of M and Braska going down a slide at an extended family gathering in Iowa over Labor Day weekend 07. I loved the colors, and the faces, and I knew it was what I wanted to use. It will be Braska’s someday for her to keep.

There used to be a wall full of fireplace and cabinets on that wall where the blanket is. (Reference here if you missed it. Here’s the after.) It is one of the best decisions we made about the changes we did to the house after we moved in. I can’t imagine having to deal with having even less space available if we still had the fireplace there.

Ok, that’s enough for now… this is plenty long. I’ll continue with the rest of the house soon. Grab some cold drinks and appetizers from the kitchen while we take a short intermission.

Anyone wanna join in the fun and share a peek into your house, office, or whatever? I’m always interested! Don’t forget to let me know so I can come take a look.

Friday, July 30, 2010

Mommy life: Personality changes

Lately, Braska has been showing signs of some changes. Not only is she growing physically—which she IS doing, though SO slowly—but she is really exhibiting changes in her personality.  Some are fun, and some are quite frustrating.
She’s 3. Someone must have told her that 3-year-olds are famous for being difficult.  Now, in fairness, and because I know there are some who will defend Miss B, she is nowhere near a “difficult child.”  But she has found her independent streak a little bit, and she has decided that she knows best in many cases.  These are good things, great milestones, really.  But it sure has made life more interesting and challenging around the house.
One nice thing is that when she disagrees with an instruction or does not want to cooperate in some way, she says, “No-fank-you” very quickly, like one word, but at least it’s polite.  It’s a hit with people who offer her a bite of food or something like that, generally people who don’t know her background.  They love that she is so polite about her refusal.  It’s cute, but it gets in the way just a tad sometimes.
On the positive side, she has really found a silly sense of humor.  She is laughing at appropriate times in TV shows or her learning DVDs.  There is always a “Ha Ha! So funny!” offered when Kinlee does something silly.  And the girls chase each other in small circles and tackle each other quite frequently.  The laughter is nice, I admit.
Yesterday, she did something else new.  She is usually very mellow in her high chair.  She sits there to eat or to get her tube feedings.  It’s usually a uneventful situation, except for the occasional, “Eat your food!” that she barks at Kinlee while tapping her tray.  But yesterday she had energy from somewhere like never before.  She just started bouncing around in her chair suddenly. The thing I found most impressive, which was prior to the video below—of course she wouldn’t repeat herself like I wanted—was that when I asked her “What are you doing?” she said, “Jumping!”  Answering a “what doing” question, as they’re called in her IEP, is a big deal, something we’re working on. And it is something that she’s not all that strong at recently. 
But this day was different… so I captured a piece of it.

Thursday, July 15, 2010

Answering school questions

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

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…

Tuesday, July 6, 2010

Comparing comparisons

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:

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??

Thursday, April 15, 2010

The germ count

As of right now, we are healthy.  That’s very nice. The girls are well—or as well as Braska can be with what is apparently allergies at this time of year, so still snot persists—and they are nearing their “normal” demeanors again. 

Right at the moment I can’t remember what I’ve updated about on here and what I haven’t and I have very limited time to throw some info up here, so I won’t go hunt it down. If this is a repeat, please pardon me.

Braska is due for tubes in her ears. We learned this at the end of February and were not at all surprised.  Though she made it her first three years of life with not a single ear infection, she had at least 4 in the first 3 months of school, so tubes are in order.  The ENT recommended that we get a sleep study first to see if we would just do tonsils, adenoids, and tubes all in one anesthesia trip. Sounds good to me. The sleep study was at the end of March. (Still no results…grrr. That’s another story. I’m going to be making another in a long string of calls this morning.)

To my chagrin, the ENT either has way too many patients or way too little time scheduled for OR procedures, because suddenly, when we wanted to schedule for a surgery date, they gave us June 2.  Not acceptable.  So we began to check out some options, including restarting with another ENT and still getting the whole process done in less time. But in the nick of time, I was told that there was a cancellation and we could have the slot, the first week of May.  I took it, and we resigned to the fact that we’d have to wait til then for the procedure.

Due to our string of ear infections, strep, hand/foot/mouth disease, and random other fun germies, our pediatrician recommended this week that we keep Braska out of school until her surgery, just to be SURE that we don’t have to postpone due to another little illness.  If we have to reschedule, it would probably be December before we get in, by my calculations.

Therefore, this week I’ve been talking to lots of people at her school, the district coordinator, therapists, etc.  We’re trying to work out a way for her to go to school for therapy only and in environments that we can control as far as exposure/cleanliness.  So I would take her up for therapy services at regular times for the next few weeks.  At this point, we have speech on the calendar, but I’m waiting on the rest.  OT/feeding is my primary concern, since Braska’s been making progress with Sue, so it’s the one I’ll work the hardest for. (Excuse me…for which I’ll work the hardest.   Good grammar can be so formal.)

We’re hanging out at home in the meantime.  The girls are playing fairly well, though they sure do get on each others nerves lately, and mine, and Belle’s, and vice versa in all cases…close quarters we have here, and when we’re all trying to accomplish something different on our personal agendas, it gets heated.  We’ve made a few trips to the library, with limited handling of books.  Braska has asked almost daily to “go school today?” and “fun at Jack’s house!” (She actually says it like that…there’s nothing but fun at Jack’s house apparently!)

For now we’ll take it easy, enjoy the nice weather, though we can’t really use the beloved attic fan like we would prefer since Miss Snotty only gets worse with all the crazy high pollen lately.  We’ve had her on Claritin which didn’t seem to do anything at all.  We now have her on Zyrtec, but it appears to make her really crazy inside and she acts out strangely.  So I’m not really sure we’ll continue.  She hasn’t had it last night or today, so we’ll see how she does.

That’s where we are. Not all that bad, not all that fun. But I’ll take it over antibiotics and coughing and fevers and whining (more than usual, on Kinlee’s part) any day.

I now return you to your regularly scheduled day. Thanks for tuning in.

Wednesday, March 10, 2010

Fighting for feeding

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!

Tuesday, March 9, 2010

Mommy report: Feeding demo/eval

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.

Saturday, March 6, 2010

New experiences coming right up

(This is a scheduled post…so I’m writing it Friday night, but you won’t see it til Saturday.  That’s because I want to be sure you have time to see this post with the exciting news!)

Tomorrow/today (Saturday) I will be spending the day at our local/regional DS conference.  The DSAGSL puts this on each year.  I’ve never gone, for a variety of reasons.  But this year, thanks to my buddy Adrienne, I ended up on the planning committee along with Julie. Both of us first-timers, and kind of representing the “moms of younger kids” set.  I also was asked to be part of a workshop with a parent panel on the process of doing the first IEP, transitioning from Early Intervention to the school system.  So tomorrow will be a busy day, one that I am expecting to be exhausting in a few ways, but I hope that it will go well for those who come.  I really hope more are in attendance than what it sounds like there will be.  Julie is picking me up at 7 am. Neither of us like to be up and presentable at that hour.  I believe some caffeine will be involved.

Then on Tuesday morning, Braska and I—more Braska than me—will be “the entertainment” (or the lab rat) for a demonstration by Lori Overland, all the way from Connecticut, at a seminar for therapists here.  Braska will be exhibiting her trouble moving food around in her mouth appropriately and her struggle with liquids remaining in the mouth when she tries to take a drink.  I’m really looking forward to this because Lori is a very well regarded expert on oral-motor issues and feeding, and we get an evaluation and recommendations from her for Braska as a “Thank You” for volunteering.  (Worth like $600!)  I’m all for any expert help with feeding!! And I love that we can be a part of helping people learn about issues that a tiny part of an already small population deal with daily. It was really neat how the kiddos who were originally scheduled were unable to attend and we jumped in to fill a need at the last second…just setting this up today!  Can’t wait to see how it goes.  I just hope Braska cooperates with what they need.  I do have to give a bit of case history to the group, so that will make me nervous, but I’ll make it.  It’s been a while since I’ve had to speak to a group of healthcare professionals, but I think I can remember how.

So it’s going to be a busy weekend around here—I already had an event tonight that I helped with at church, conference tomorrow, Father-in-law’s birthday on Sunday, couple appointments on Monday, and oral-motor seminar on Tuesday—I think I’ll have quite a bit of new and helpful information by the time I get to sit down, breathe, and process it all.  I’ll be sure to share.

Wednesday, February 10, 2010

Early Intervention: Parent-centered team

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?

Friday, January 29, 2010

More visits with friends

A few weeks ago, we went to see my friends Connor and Lucas.  They used to live in the town where I lived when I was a tiny baby.  Now they live in a different place, just like us.  But a different different place.

So we went to see them and play for a couple days.  They have the BEST playroom and SO many toys!  And they also have the best mommy and daddy for reading books!  Mr. Matt and Miss Nico read lots of books to me and KiKi, and I love books, so that was my favorite part.

They also have a chair I call the thinking chair.  Like Steve has on Blues Clues, you know.  This is me showing Mommy how I smile.  She says I need to practice a little.

Here’s KiKi playing in the playroom.  She had a lot of fun in there.

And before we left, all us kids got on the couch for a picture.  Mommy and Miss Nico took a bunch because we were being a little silly and not listening all the time.

Then Connor took a turn.  He’s pretty good!  

And Miss Nico helped Lucas take one, too. 

We had fun, guys!! Thanks for letting us play and feeding us lots of yummy food!  We can’t wait til we can play with your new little sister! (That’s what I hope it is…the new baby.  They need a little girl like me!)

Tuesday, January 19, 2010

Chicken broth rocks!

I got my Wii Fit in today--a little yoga (warrior, sun salutation, etc) and some strength (lunges, etc), and some step. The step was a bit more challenging than normal because I was holding a very feisty and unhappy-when-not-attached-to-Mommy 11-month-old. It made it just that much more effective, right?!?

Another day down with no cheating...I'm not even licking my fingers when giving the girls meals, even tearing up pizza for KiKi. That's something. Because I'm horrible about nibbling while I'm feeding them. But nope, I'm all in. Well, I don't know if you can say that just 2 days in, but still. I'm impressed with myself.

I got very hungry today, but I made it. We were very busy with all the aforementioned running around, but tonight I needed something. So--with the docs approval, never fear--I had a cup of hot chicken broth tonight, and it hit the spot. A little something to do with my hands and nice and warm to boot.

It would have been nice if it were crunchy or meaty or sweet or anything really, but it was successful in keeping me from looking for something else. So it did it's job.

Oh, and Cate--Great ideas, the schedule is pretty fixed. Lunch time is not flexible, some days M stays at work, but we try not to do that more than we have to. I have wondered about doing a 1230 lunch, which would be great, but it hasn't been possible yet, and probably won't be. The girls are asleep til we get them up to put them in the car to take M to work, and I can't hardly stand to get them up earlier. They won't eat for a while after they get up anyway. So we'll have to deal for now and figure it out as we go.

And no, this won't be my only blog topic, but it's new and I'm trying to stick with it... so bear with me. I'll probably be doing little updates on Twitter (which is now in the right margin) and spare all you blog readers from the boring blather.

Last notes on Day 1. Welcome Day 2

For Maggie M--Those cattle ranchers should be so darn proud of you!!! :o) Since I'm following the docs orders at this stage, he said no red meat. None. And he encouraged me to make that just part of the new norm as well. We'll see about that. I love a good steak or vegetable beef soup with nice big chunks. (A certain mother-in-law makes a very nice version.) And a big juicy burger with all the fixin's. Yum! But for now, it'll be no beef. I even gave away all the frozen beef that I had so others could enjoy it.

For Mom--No, there will be no deer. Period. Not now, not ever.

As for day 1--I made it. I got it all in. Mostly. The chicken and broccoli were good, some of the best chicken I've made, thankfully.

With a little assistance, I cleared out the pantry and fridge/freezer of everything that is not something we can eat (I kept a little good stuff for M...he's not really 100%, and he doesn't have to be) and not something Kinlee can eat. Otherwise, it's gone. I ended the day not feeling well, though I don't think it was food related. But it was no fun, so I went to bed early.

Mornings are hard, as we get up, get girls up and changed, load everyone in the van and take M to work. Then we come home, unload girls, feed them, get them dressed if we didn't get to do it before the work drop-off, load them up again, and leave (all in less than 30 minutes) to take Braska to school. So by the time I get home after that, it's almost 930 and I haven't eaten yet. I'm not overly hungry, but it throws the whole schedule of the snack in the morning and a decent lunch time.

As a point of reference, work is 12-15 minutes each way (only 3 miles) and school is 9-12 minutes each way (only 2 miles--gotta love the city).

Of course, lunch is another issue. I pick Braska up at noon, then we sometimes come home (having only about 20 minutes before leaving again) or we spend that 20 minutes finding something to do in the car until we have to head over to pick up M for lunch at 1. Then it's home, feed girls if they haven't eaten yet and get Kinlee to nap (if I'm sending the van back with M). Or the girls and M get lunch while I do the feeding for the little ones. Then it's time to load up again and take him back by 2. Then it's home, unload girls, get girls to nap, and then I can eat. Again, not ideal timing.

But it's easy to see there why our eating habits are bad, and they have been forever. We eat on the run ALL the time. We never sit at the table, the girls are in their chairs and I'm feeding them while M is in the living room or downstairs or doing whatever. I eat a bite here and there, or I eat in the car. If I do eat at home, it's standing at the counter or in between feeding one girl or the other.

I realize some of you have conquered these issues of juggling kids and husbands and families and food and even work. My hat's off to you. We've got a long way to go.

For now, it's time to get my oatmeal and egg whites (which I am now eating from boiled eggs...can't do the scrambled). Maybe I'll get time for a shower before I need to go pick up Braska. A girl can dream.

Monday, January 18, 2010


To answer a few questions…

It’s not just for 7 days, but I’m following it exactly as prescribed for 7 days and then we might alter a veggie or two, add a healthy something here or there. But overall, the goal is to make something very close to this my new norm…for quite a while.  It’s going to be a long road.

The important parts according to my doc, who is a fitness/health nut, are to drink the water right before the meal, like all at once.  Then for lunch and dinner to eat the veggies next, then the meat.  The high-fiber broccoli helps me to feel full.  And though I like broccoli, 2 cups is a lot of broccoli!

We’re still doing Wii Fit Plus, but I’ve had a few days off.  Lots of evening activities and by the time I get home and put the kids to bed, I’m in no mood for listening to the little voices talk to me on the Wii.  I’d like to be able to do it in the morning, but scheduling is difficult with work and school drop-offs, etc., and tiny hands interfering.

We’ll see how it goes.  I just baked a bunch of chicken so I’m good for a few days of meals.  I like that part, not much cooking!!  I divided it up in 4 oz pieces and it’s ready to go, about 4 days worth for me and M.  I plan to get some salmon fillets too, they are yummy and come in 4 oz fillets, nice and handy.

This morning I learned I don’t care for egg whites scrambled.  We might do some boiling and I can eat them that way, sans yolks.  I didn’t quite get all the oatmeal down, but without the butter and brown sugar, it sure lacks something!  A little Splenda and cinnamon and it was almost ok.

It’s 2:30p and I just finished my lunch, it’s been one of those days.  Running and picking up, dropping off, feeding kids, etc.  But the 2 cups of broccoli wasn’t bad at all.  And I even ate it straight steamed, no seasoning and no fats added, and it wasn’t bad.  Who knew under all that cheese sauce broccoli was good on its own??  (I kid, I like broccoli almost any way it’s presented.)

I’ve been texting Melanie and Julie much of the day… we’re a good team so far.  Melanie is our champion, having been on this path for 3 years and having some stunning new skin to show for it!  She’s really doing this for the moral support, and because it is not far from her “new norm.”  She’s pushing me and I’m glad for it.  Who would have known after 18 years this is where we’d be, Mel??

So feel free to join in if you’re game.  I’m only 2/3 of a day in, but I’m feeling pretty positive at this point!