Mommy report: 3-day wean, day 2

Yesterday went pretty well overall. At dinnertime, Braska was not much interested in taking anything. It took alot of prodding to get her to take her soup (vegetable beef soup, condensed, with only a slight bit of milk added to reach the right consistency. Pulsed with immersion blender.) but she got it in. The oral milk intake was even more of a challenge. She ended up taking about 1 ounce before I gave up.

For the whole day she got 31 ounces of fluids in, 5 ounces of whole milk orally and 26 ounces of the "50/50" Pedialyte/water mixture. The poor girl was going through diapers like never in her life. And she didn't really care for all the action her body was experiencing. She seemed uncomfortable, but not really unhappy.

Of course she woke up this morning in a totally wet bed, wearing completely wet PJs. That's the first time that's ever happened, with only a couple previous experiences of ANY diaper leaks at night. And she generally has 8 ounces of Pediasure right before bed, so that's something...

Today we had a bad start, schedule wise, since we took M's car to the mechanic before work then I drove him to work, 25 minute commute each way. By the time we got home, we were already over an hour behind on the feeding/fluid schedule. But we almost caught up before lunch when the nutritionist arrived to check in.

Braska weighed 23 lbs 3 oz today, so it's good that she's not going down yet. (Kinlee was about an ounce over Braska when we weighed her too. Wow.) It was ok'd today that we decrease some of her fluids since it seems that she was overwhelmed with the constant input, both orally and via tube, and she didn't seem as interested in her oral foods as she has been lately. I think she was just flooded with the 50/50, being so much more liquid than she generally gets.

So we're down to 20 ounces of fluid each day, for today and tomorrow, hoping that she'll feel more like eating. Tonight for dinner she did well, enjoying pinto beans and a yogurt chaser. Then she asked for more yogurt later in the evening. The girl does love her yogurt.

Tomorrow we'll see how it goes, but I feel like she might do better on her oral foods again without the excess fluids keeping her belly from really getting hungry. She has never really shown any indication of hunger or thirst, but lately she has been asking for milk occasionally, so we hope that she's starting to get some sensation that she wants something to eat or drink.

As a side note, other things she likes to eat...cream-based chicken and dumpling w/veg soup, pulsed with immersion blender; lasagna, pulsed; cottage cheese with peaches, pulsed; fruit cocktail blended then stirred with baby oatmeal cereal for proper texture; pork roast with potatoes, carrots, and onions, very tender in crock pot, then pulsed; mashed potatoes (fattened up with gravy of some kind or a little butter and sour cream.)

We have to add alot of things to her foods to add calories, fat, or protein to her diet. It's hard to work the balance between the right texture, calorie density that she needs, and proper nutrition...all in little cups of puree.

Thanks for your kind words and encouragement. We have lived in this extra-frustrating and constantly-an-issue feeding world for 4 years now. We know that this isn't some drastically difficult thing, but at the same time, it is hard to really THINK about feeding/calories/fluids/proper technique this much for 3 days straight. So it is a bit tiring, but she's going to do great, and I'll survive!

Mommy report: 3-day wean, day 1

Under the supervision of Braska’s nutritionist, we are attempting a 3-day wean from nutritive support via her g-tube.  This DOES NOT mean we are ready to be done with the tube, not by a long shot.  But it does mean that she has made some very good progress.

I’m going to document some here because I know some of you are in a similar boat with feeding issues and tube feeding.  If you have any questions, let me know.

We started this morning, and the key changes to how life will go for three days are these…

• Braska gets nothing in her tube except a 50/50 mix of water and Pedialyte. Nothing of actual nutrition. Just fluid support.
• It’s all on me to be sure our schedule is open enough to allow for time to sit at the table and work on as much oral intake as possible.  We get one shot at a wean as authorized by the school district via her IEP. No pressure.
• We will be tracking every single mL and calorie that she takes in, and the nutritionist sees her each day for weight check and to tally calories to be sure we’re safely providing what she needs.
• Her schedule requires us to be putting something in her, via tube for fluids or orally for nutrition (purees/mashed meals, etc), about every 2 to 2 1/2 hours.  Hence the schedule openness being important.

I would have liked to arrange this for a Friday, Saturday, Sunday so as not to have to coordinate with a school day, but that’s ok. We made it work today, even though it meant meeting the nutritionist at the school for her first weight check and to make sure we were all on the same page.  Then I returned an hour later to give her the mid-morning fluids before her snack at school. (They don’t give her any tube feedings at school, just not necessary to do, so it was easier for me to go do it for the one time it’s needed instead of prepping someone on how to do it for one bolus feed.  It took all of 2 minutes. 5 oz.  LOVE that g-tube sometimes. So efficient.)  Now I go back in about 30 mins to pick her up. Glad that’s just one day, though.

Here’s how her schedule looks…this is fluid intake, which is supposed to be between 30 and 37 oz each day.  Which is A LOT more than she usually takes, and more than KiKi has either.  So we’ll be going through diapers like crazy, I’m betting.  (They warned me not to worry about our pseudo potty training during this wean time.) We’ve set it up to hit the 30 oz mark… these are all fluid amounts to be given at each time, remember.  Along with whatever oral food she’s taking.  These amounts can be given by mouth or by tube, but she takes very little by mouth in terms of fluids.

7 am—30 mins before breakfast—3 oz
730 am—Breakfast—2 oz
10 am—mid morning snack—5 oz
12 n—30 mins before lunch—3 oz
1230 pm—Lunch—2 oz
330 pm—mid afternoon snack—5 oz
500 pm—30 mins before dinner—3 oz
530 pm—Dinner—2 oz
830 pm—Bedtime—5 oz

So far, she had 5 oz before breakfast by tube, then she ate 4 oz yogurt for breakfast and I managed to get 2 oz of milk in by mouth over about 40 minutes of really pushing her.  But she did it.  Then I gave her 5 oz at her mid morning time and she was getting ready to have her applesauce snack at school, which she likes to finish, so 4 oz there.

We’ll see… the nutritionist will be back tomorrow mid day, and I’ll scan and email her the daily log list tonight.  I am glad Braska’s to the point we can do this and see how much she will take in, but at the same time, it’s scary to think about having to keep a schedule like this all the time if she’s going to be “downgraded” on her tube, meaning that she would be classified as needing her tube for like 50% nutrition instead of 90% nutrition, or something like that. 

At her weight check this morning, she was 22 lbs 15 oz.  She was also 35 1/4 inches. The little muffin is 4 years old! She had been up slightly over 25 lbs for a short while at her record high weight, but being “belly sick” for about 10 days over the holiday cost her well over a pound, and almost 2.  She had lost a little before the ickies when she had been doing better on oral intake.  It’s really hard to get her enough calories in foods that can be properly mashed/blended to a texture she can handle.  So we’ll be watching her very closely. 

Here’s hoping I can maintain my sanity, remember the rules and watch the clock.  Oh yeah, and not forget that I’ve also got another child and a husband (and a dog) that occasionally need to be tended to as well.

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.