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.

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…

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!

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!

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!

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.

Mommy report: Skill surprises

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!!

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.