Big News!!!! Button Free!!!

Mommy note:  Tonight as we were leaving the in-laws’ house at about 9:45pm, I heard an “Uh-oh” and turned around to see PaPaw holding Braska button.  It was not attached to her. 

We all kind of paused, I said flippantly, and half joking, “Well, I guess we’re going to be done with that now.”  I then quickly had anxiety start creeping in.  Over the next minute or so, quick conversations happened, and M agreed that we were probably ready to just let it stay out.  We were 45 minutes from home, had no supplies with us to reduce the balloon (which was still intact, weird as that always seems to me) and put the button back in, so we had to make some decision pronto.  Break the balloon in order to get it back in and hold the stoma open---but we don’t have a back-up button at home---OR just call it done and move on.

I called our nutritionist right then, not realizing until it was ringing that it was 9:45pm.  After a quick chat with her, and her assurances that she felt Braska was also ready to let the button go (we have discussed this recently, possibly planning to take it out in the next month or so), I agreed that this was our pivotal moment.

This is the moment we have been working toward for 5 1/2 years. 4 1/2 years with the g-button. 

So we put a makeshift bandage over the stoma, which was not leaking one drop, even though she had just had a late meal, and gave hugs and goodbyes.

As we were leaving in the van, I said a quick prayer that it would be all good. That she will continue to do as well as she’s done.  That the stoma would heal quickly and without complication.  And that I could adjust to this new strange life.

Because it seems like it is a new strange life, and it’s only 90 minutes old.  I suppose when everything has been about feeding, and getting off the tube “someday,” and being a mom of a tube-fed kid, it just feels really odd to have a sudden change in identity and shift of goals. 

But it’s a good strange. A positive odd-ness.  I’m excited…

Braska did stop to look at what was happening, she seemed slightly confused, but went right back to wrestling and playing immediately.  She’ll not miss it one bit, if my guess is right.

So celebrate with us, pray for her continue progress, and if you’re on this journey, know that it CAN happen…  I am realizing that I never really visualized that this day would come.  But it’s here. And I’m going to have to adjust to this new button-free “normal.”

Mommy report: “Eating” cookies

I feel it’s only fair to provide full disclosure, to clarify where we’re at with feeding. 

Jennie left this comment on a recent post…
Tears in my eyes seeing her eat a snack... just like everyone else.
Someday...

And because I know that feeling so well, I don’t want to mislead those of you who are somewhere on this feeding frustration journey.

Braska is progressing GREATLY, when we look at the big picture.  If you saw this pic, you can see something huge even if you don’t see the following few seconds. 

She has a cookie in her hands, and of her own free will, she has it in her mouth, between her teeth.  That, by itself, is amazing.  She has come a long way to get to that point.

But she didn’t eat the cookie.  She probably closed her teeth on it just a bit.  But she didn’t actually break the cookie off in her mouth.  She then set it down and was finished.

So while we celebrate where she is, we know we still have a long way to go.  And though most kiddos don’t have anywhere near the long learning-to-chew journey that Braska has (but a few do right, Jennie?) for those that know those months and years of work waiting for true eating to happen, it can be so difficult to watch.

The true picture of where she is in this process…  At a couple weeks short of 5 years old…
~She is crunching on very small graham cracker sticks in feeding therapy. She will close her teeth and crunch a few times.  Sometimes the crumbs will stay in and she’ll manage them and swallow, but many times the pieces come out.
~It has taken us over 18 months of feeding therapy to get to the point that she will even have food in her mouth that is crunchy, and then to close her teeth and make the crunch sound.
~She still has a very VERY long way to go before she just picks up a snack cracker and eats it like her sister does. 
~She IS still taking all her necessary fluids orally, as well as all her calories and nutrition in her food.  No tube use (except for eye surgery day when she slept all day) for over 2 months now. YAY!
~Her “eating” on a daily basis is still mashed or pureed foods, though not a super smooth texture. She is handling a thicker, more lumpy texture at times.  She can now do instant oatmeal without it being blended.

So celebrate with us for what she has accomplished!  But keep pulling and praying for our girl to keep progressing.    I’m looking forward to the day I hand her a graham cracker and she just eats is like no big deal!

31 for 21: Braska’s 2011-2012 IEP, part 1

IEPs can be scary.  Some people dread them.  Some people just ignore them.  (I’ve been shocked at the stories I’ve heard at our school and in our area about parents who don’t even attend, or who just sit and listen and say, “Whatever” in a non-caring way.) 

I don’t dread them or ignore them.  I view them as an important part of the process of educating Braska and getting the best services for her that we can.

There are a lot of parts of the IEP, and this isn’t really meant to be a technical lesson on that process.  Though if you have questions, don’t hesitate to ask… I may just refer you to pros in your area. There are great training organizations out there who can equip you very well.  Around here that’s MPACT, and I’ve been to several of their workshops.

But feel free to chime in with experiences or tips or your favorite parts of the process!

The first part of the meeting is always the most important part: FOOD!  I never show up to an IEP meeting of any kind without some kind of goodies.  If in a hurry, it could be M&Ms or trail mix, but I generally bake, since my meetings are usually at 9am.  I’ve done coffee cake, donuts, cinnamon rolls, pumpkin bread, and others.  Sometimes I’ve even taken little pairs of wrapped cookies so they can take and have after lunch, too.  Some meetings I’ve taken drinks, others I’ve skipped that part.

This time, with sick tots the days leading up to the meeting, I went the easy route… Great Harvest Bread Company and QT.  I picked up a couple kinds of fall breads, Cranberry Almond and Cinnamon Chip, as well as some blueberry cream cheese scones.  Then I hit QT on the way and got 4 large cappuccinos in different flavors, with extra cups so we could share them.  These are always a hit! 

All in all, super easy, not expensive, and the impact is huge.  These team members do a lot of IEP meetings, they work with kids all day, and to sit in a meeting with something yummy to nibble on and a pick-me-up drink is a treat to them.  They are always excited, even though my team knows there will be goodies before they get there.  Julie and I have developed a bit of a reputation at our school.  And we’re trying to teach the other parents we come in contact with how big a difference this can make to the comfortable feeling in the room.  It puts everyone at ease and makes the whole process less business and more conversation, which tends to benefit all involved.

Once the food is all arranged and people are settled in, we generally start with the Present Level element.  This just states where Braska is currently in a variety of categories.  I like that they start with her strengths, then talk about her areas of weakness (none of which are a surprise, of course) and then we go over each of her therapy areas to talk about her current abilities.

Some snippets from Braska’s Present Level:
Strengths
~Letter and number recognition.
~Sight word identification
~Happy and enjoys being around peers and teachers
~Greets adults by name
~Easily adapts to changes in her day

Weaknesses
~Difficulty in visual motor interferes with task completion and fine motor skill development.
~Delays in sensory processing, motor planning, and self-help skills interfere with Nebraska’s feeding and drinking tasks during snack time.
~Decreased receptive language skills affect her ability to follow directions with 2 or more components.

I’ll continue with more of the Present Level next…

What’s your IEP experience? Good? Bad? Dreading the next one? Why?

Longest in a long time

 

Braska had some kind of weird night. It started yesterday afternoon.  She napped ok at Auntie Rachel’s while I was taking care of some things there.  Then she woke and seemed “off” or not herself.  She had a GREAT day at school yesterday, by all accounts, doing really well with feeding therapy (yay!) and classroom.

We came home about 6 p.m. and she spent the evening very agitated. She didn’t want anything we offered. She acted exceptionally fidgety and had the sad, pouty face a lot.  She would flop on the floor, roll around and whine, then get up and take a few steps before flopping again.  When we would try to hold her, she’d squirm and then slide down off our laps. Everything we asked her about received a “No, not yet,” response with a very pathetic tone.  A few times she was knocking her head against the cabinet in the kitchen while I was there, and then the stove.  She only did this a few times, but I didn’t care for it one bit.

At one point, I was able to distract her with the sight words flashcards that she loves, and she seemed to kind of normalize for a few minutes, but then she returned to the highly agitated state.  She didn’t seem to be in pain, per se, but she was clearly very uncomfortable. 

We tried to put her to bed, but she thrashed around in her bed and would not settle down.  She didn’t cry, but grunted, sort of.  She didn’t grind her teeth, which I found odd, because that is almost constant when she’s tired and not feeling well. After about two hours, I got her up and rocked her, thinking I could help her calm down.  She went to sleep after I had held her pretty snugly and fought her fidgets.  (We do occasionally have to do this, hold her tightly and kind of assist her with turning off for the evening.  I’m sure it’s a sensory thing as well, but it’s usually easily dealt with and over for the night.) She gave up and went to sleep, but as soon as I laid her down, she was awake and upset again.  This happened several times. 

I took her into to my bed, thinking I could lay with her next to me and hold her tight to go to sleep, then she could just stay there instead of being moved.  Unfortunately, that means I do not sleep.  Even when she is sleeping well.  I just hear every breath and sound and wake with all of them.

But she did not sleep well even in our bed.  I tried every kind of pressure on her, including wedging her between me and a very heavy feather pillow.  It was clearly a sensory issue, in my opinion. It was like she could not stand being in her own skin.  She just could not get a moment’s reprieve from whatever was bothering her.  She would sleep for about 15 minutes, and then wake thrashing again for the next 30.  Then more sleep for 15 minutes, and on and on it went.  We even gave her a small dose of melatonin and it did not help one bit.

Several times I tried to take her pulse to see if her heart was racing.  But I literally couldn’t get her to be still long enough to get it.  Her respirations were definitely faster than usual, but not rough or labored.  It was really bizarre. And it just kept on.

I curled up at the end of my side of the bed and tried to sleep, but it just wasn’t gonna happen.  I did get a few little spots of 15 or 30 minutes at a time…not nearly enough.

About 3 a.m., I changed her diaper while she was thrashing and already awake.  (She’s been overflowing diapers at night lately…can’t have that in our bed!) She went back to sleep after some more tight rocking, but it only lasted about 30 minutes. 

She slept a little longer with shorter bouts of agitation as the morning went on.  And when M got up at 6 a.m. to get ready for work, I slipped into his side of the bed to try to sleep.  She woke about 7:30 a.m. and seems ok.  I can’t imagine how that’s possible.  I’m debating whether or not to take her to school.  Can she possibly be worth anything with so little real sleep? 

I feel completely run over.  And it’s a busy day full of must-do items.  I actually have a scared feeling when I consider getting through the whole day.  Strange.

And it bothers me that I have no idea what was going on.   What in the world would cause a reaction like that?  She had no red dye yesterday, which is slightly like what I would have expected with this reaction.  But it’s still different.  I just don’t know what it was.  And it honestly makes me afraid that it will happen again. 

I hope it was a strange one-time occurrence.

Anyone have any thoughts??

One week is in the books

One week ago yesterday, Braska had her last tube feeding. I thought we were going to have to change that yesterday, as she really wasn’t in the mood to be drinking. I’ve said before, and it’s not overstated, that to make her mouth, tongue, throat, and all the incorporated muscles of lesser known names work together and allow for her to take fluid in and swallow it properly is a lot of work for her. It does not come naturally. It is not a reflex. She does not “just get it” now, she is working hard to get it. Very hard.

At times, when she’s holding a mouthful of milk, just sitting there, waiting for me to take the sippy cup away, her eyes will go from side to side, her neck twitches and moves, her jaw slides from side to side or clenches a bit. It’s all like a bit of quiet chaos as she tries to organize everything in order to get that swallow done right, without choking, and allow more drink to come in. It’s a very slow process.

Don’t think that she’s just up and guzzling down her fluids. To get about 4 ounces in her takes about 10 to 15 minutes of constant work. She gets a break and then it is time to try again, with either more fluids or something to eat. We have to do food/drink in staggered amounts because she doesn’t hold very much at one time.

Because of that, the non-use of the tube has definitely created more work for me, and for M when he’s in the feeding role. Much more time is devoted to getting her food/drink in orally than when we can rely on the tube. But we are sticking with it, and she hasn’t fought us too hard yet. I think we can get there, even if it is slowly.

We’re already in to this process almost 5 years. Now we’ve got one week toward the next chapter… I’ll take that.

Mommy report: Two days. Tube free.

Short and sweet.

Braska has had no tube feedings since Tuesday morning.  None on Wednesday, and none on Thursday.  She had 20 ounces of fluid yesterday, and about 23 today.  All oral.  Hard to believe, even though I’m right here for all of it.

It’s a struggle, but she’s showing improvement each day.  She hasn’t asked for “milk in my belly” at all, a favorite request of hers. 

I’m exhausted, but it’s ok.  Though the effort required of me at each feeding/drinking encounter multiplied greatly versus the super simplicity of the g-button, she’s the one doing all the work.  It is really hard for her, but she is managing like a champ.

Practice practice practice. Drink drink drink. That’s what’s on our schedule.

Oh, and tomorrow morning is our follow-up appointment from the May eye surgery. Expecting to plan for the date of the next one.

Mommy report: BIG news for a little girl

Kids eat. Kids drink. That’s what kids do. It’s built in. They just know how.

But mine doesn’t. Well, one of them does, but the other one, the older one, the way-tiny-for-her-age one doesn’t. (We will find out tomorrow if we’ve made our summer goal of 25 lbs! It’s going to be close…)

She’s been in feeding therapy for over 4 years. She’s made progress. Lots of it. But it’s VERY slow going. But this isn’t about that. (If you want more details about our feeding journey, please feel free to ask. I’m happy to address particular questions.)

We’ve been working on Braska’s oral liquid intake more diligently since the spring. The team initiated offering frequent drinks during her school day, between each activity, trying to increase her oral intake. She is up to about 3.5 to 4 oz a day (9am - Noon each morning). That’s a very VERY big improvement from a year ago! She only takes sips, like a mouthful at a time, (from a sippy cup with no valve) then she has to let go of the cup and swallow. This is done with assistance to hold the cup. Although she CAN hold it and take a drink, she is not at all motivated to do so on a regular basis. She will occasionally ask for a drink, take a couple of sips, and then be done. So we are still using her g-button for her fluids.

Yesterday, we had a bit of a discovery. I learned that Braska was keeping a little trick just for Miss A in class at school. She was taking continuous drinks. Like without letting go of the sippy cup, swallowing and then taking in more. This is HUGE! There is no way to describe what a big deal this was for me to hear.

So we tried it a little in feeding therapy yesterday, and I did it again last night a couple times. The trick, we were told, is to sing ABCs or some such song while holding the cup up for her. This is no surprise since singing is often a hit and a motivator for her. Last night she took about 5.5 oz orally, and I was thrilled!! It is A LOT of work for her to do, and it’s still a slow process, but she’s doing it!

Today, she took about 3 oz at school again, then when we got home, I offered her milk via cup several times. She was willing to tolerate me holding it up for her to try to swallow. No doubt, some does leak out when she struggles with it, but she is taking in far more than she’s losing. This afternoon, she took 6 oz from her cup in a matter of just about 10 minutes! I was SO excited!!!

BUT… that wasn’t all…

Tonight, she came and asked for milk. I took her in and set her on the counter in the kitchen, and we did several drinks. She didn’t lose hardly any, and I found a good rhythm of how long to push her and when to give her a break. She took ANOTHER 6 OUNCES!!! So from noon to about 9pm, she had 12 ounces orally!!!!!

I hesitate lately to even write about these things, because we have found that even people who have “feeding issues” under their belt are light years ahead of us in the journey. We’ve yet to meet anyone who has a situation quite like ours, with the limited fluid intake ability combined with the general non-interest in food (though that’s improving here too) AND the inability to chew at all at her age of almost 5. Zero. Zilch. We cheer lately when she closes her teeth on something, and it is good. But we’re a long way from handing her a french fry and watching her eat it.

So it’s ok if you can’t imagine what this means or truly empathize. You can still celebrate with us as we dance around in the kitchen and hoop and holler about the strides this girl is making.

This is HUGE!!