Friday, November 4, 2011

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.

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 Smile 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!

Friday, October 7, 2011

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:
~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

~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?

Tuesday, September 13, 2011

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??

Wednesday, August 31, 2011

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.

Thursday, August 25, 2011

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.

Tuesday, August 23, 2011

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!!

Wednesday, June 8, 2011

Look back and laugh: Going sterile

Back by popular demand, and because this topic has come up on a DS forum I like… here’s my guest post done for M’s blog, which is no longer in publication.  It’s about time we all have a good giggle, and M doesn’t mind if it’s at his expense, just this once.  For real… I asked.

From 9/2009~

I don't remember much about "The Great Snip of 2009". Here is what I do remember: They stuck a needle in my arm and told me they were giving me Valium, then I woke up in a stranger's driveway and immediately went unconscious. The following is RK's interpretation of that event.


After about 30 minutes, the nurse came to the door and said, “RK?” She looked around the waiting room and I motioned that it was me. She asked if I could come back. I was feeding Kinlee, so it took me a few seconds to gather up the bottle, the diaper bag, my purse, etc. and get to the door. As we walked back, the nurse told me they had given him Valium just before they got started, and he was still “pretty out of it.” She said I needed to help him get dressed. I was thinking that I didn’t know about the Valium or I’d have told him he is very sensitive to sedatives. They left that part out of the post op consultation.

We walked through the door into the procedure room and there he was, lying on the exam table. He was more than “pretty out of it,” he was unconscious. Practically drooling while he snored very deeply. It wasn’t his most sexy moment, though the Cardinals shirt with athletic supporter is an interesting ensemble. And no, I didn’t take a picture of that particular part of the day.


I wasn’t sure what I was supposed to do with Kinlee while I attempted put his pants on while he slept. So the nurse held her while I went back downstairs to get the stroller from the van. After I returned, having called Julie (Braska was at her house playing with her buddy Jack) to tell the already funny story and how it was going to make us later getting Braska, I strapped Kinlee in the stroller and set out to dress my unusually floppy husband. It should be noted that the nurse did not assist me at all. Now, she HAD put the jock on, thank goodness, so that’s good, but I would have liked some help.

Luckily M had decided to bring his flannel PJ pants (affectionately referred to as “comfy pants” at our house) because I can’t imagine attempting to put jeans on someone in that condition. The nurse had gone to get a wheelchair while I was working on the trouser task. “We’ve never had this happen before,” she kept saying. “We’ve never had to use a wheelchair before.” When I lifted up a leg to start the pants-on process, M stirred a little. I started to fill him in on the situation, even though it was quite clear that he wasn’t grasping it. But at some point during my description, he said, “Ah dun ned ah weecha. Ahken wahk jes fahn.” Ok, maybe trying to write the slurring won’t work, but imagine the drunkest person you’ve ever seen in a bad B movie and double it. He was WAY out of it. He clearly could NOT “walk just fine.”


He almost fell off the table at least 3 times while I was dressing him, mostly when I was trying to lift his rear end up to get the waist up where it needed to be. There was a bit of lift-n-drop, lift-n-drop going on, yet he slept, only rousing once to say, “Is it done yet?” He ended up in this position.






I told him it was over and we were going to figure out how to get him to the van. Again he said, “I don’t need a wheelchair.” Then he added, “Just sit me up.” I told him if he could sit up on his own, then we wouldn’t use the wheelchair. He tried, if you count a feeble grunt with no actual movement to accompany it. “Come on, just sit me up.” I didn’t comply, as it became obvious he was getting ready to be in a puddle on the floor. So I tried to shove him back up on the table more securely.

When the nurse returned with the wheelchair, she said, “He just needs to stand up, then we can get behind him.” I assured her he would not be standing up. She kept saying, “Muncher, Muncher! You need to wake up. It’s time to wake up. You can’t go through the waiting room like this.” Apparently there were a whole day of vasectomy patients behind us, waiting in the room that we’d have to pass through to exit. She didn’t want this picture in their heads before they got to the moment of truth of their own. “Muncher, Muncher! Please wake up just a little. I need you to wake up!”

M was not responding to all this encouragement from the nurse. He was snoring right through it all. But as we scooted his rear around to attempt to get him off the table into the wheelchair, he did manage to say, “I don’t need this wheelchair. I can walk to the van.” I ignored him. I ended up lifting him up completely, with my shoulder in his chest and him slumped over my back to pivot him into the wheelchair. The nurse helped by holding the wheelchair still. I probably shouldn’t have let him plop into the wheelchair quite so roughly, but there wasn’t much I could do about it at that point. I just about ended up in his lap from the momentum of him falling down into it.

The nurse gathered his feet up and straightened his head, like she thought it would stay upright, and then headed out of the room. I grabbed my things and pushed the stroller out behind her. She kept urging him, “Muncher, Muncher! PLEASE sit up straight when we go through the waiting room. Please wake up! You’re making us look bad.” I just followed and smiled at the men who looked nervously at our little parade as we passed through the waiting area and out the front door.

We went down the elevator, M sleeping soundly, Kinlee looking at him like he was green and had 4 noses or something, the nurse still saying, “This never happens. I don’t know why he won’t wake up. We’ve never had this happen before.” I just let her stew a little and didn’t say anything. When we got to the front door of the building, she waited while I went to get the van. I put Kinlee in her seat and brought the van up to the front door. The nurse wheeled him out to the passenger side door, and I told her I wasn’t sure how we were going to get him up high enough to get into the seat. M managed to throw in his 2 cents by saying, “I can get in by myself. Where’s the door?” He was reaching for something to hold onto, yet his hand was only about 3 inches off the arm of the wheelchair, missing it’s mark by over a foot. As much as this was funny to watch, I was kind of wishing he could actually give us some assistance. The nurse pushed him out of the chair from behind while I held his legs stiff so we could turn him with his rear to the van. Then I grabbed him around his thighs and lifted him, again quite roughly, into the van seat. I had thought to recline it so that he could flop back, so we just shoved his feet in enough to shut the door, I buckled him in, and the nurse said, “Good luck.” It wasn’t a comfortable position, but it worked.


I called M’s parents to see if Dad was available, because it was very clear that I was not going to be able to get him out of the car, up the steps to the house, and back to the couch or the bed. I figured since he was in the van, we could just head south 45 minutes and let them help me get him out and recover there for the day. But first we went by Braska’s school to cancel a therapy appointment we had in an hour, and we stopped at QT to get frozen cappuccinos (a fave of me and Julie) to share with her since she’d kept Braska for us. When we got to Julie’s, I left M in the van, in the shade of the driveway, and put the windows down. I brought out a blanket to prop his head up since it didn’t look comfy the way it was. I went in with Kinlee and decided we’d give M a bit to come around a little, maybe avoiding a trip south. Julie and I chatted for a while, about 45 minutes, as I watched him out the front window to make sure he wasn’t stirring around or anything. He didn’t move a muscle.

I loaded up the girls, called Mom to say we were coming, and stopped by home to grab some things. By the time we were in our driveway about 5 minutes later, M was a bit more conscious, asking where we were, saying again that he was fine to walk into the house by himself. He was holding his head up a bit more. But he still couldn’t move his limbs well, and I didn’t want to chance him ending up on the garage floor for the remainder of his recuperation.


We headed down to his parents, and by the time we got there 45 minutes later, almost 2 hours after leaving the clinic, he was more lucid. Dad came out to help him in to the house, but he was able to bear most of his weight on his own.

There were hours more of sleeping, bags of frozen vegetables that his mom deemed “contaminated” and lots of crude jokes at his expense.



Footnote: 6/8/2011

This story still makes me chuckle almost 2 years later.  From what I hear—from those who have this on their Top 5 fave stories ever—it’s better if you read it out loud to family.  So feel free… let us know if anyone harms themselves falling out of a chair. Not that we’re legally responsible for such things, mind you, but we’d love to know about it.

Tuesday, April 19, 2011

Eyes can be scary

Today was the appointment with Dr. C to discuss (again) the issues Braska has had for almost two years now.  The head tilt and tip.  For lack of a better description.  I wish I had time to find pictures, but if you’ve been around long, you’ve noticed that she looks down her nose at everything, literally.  (I just peeked at her blog and saw that the picture posted earlier today of her at the Eye Center’s front desk shows the tip and tilt, both.  If you look, she’s looking into the desk area, but her head is aimed as if she’s looking up at the ceiling. Her eyelids look closed because she’s always looking out of a little space right above her cheek.  The pictures of her scraped up face and head from last week show it as well. Rarely do we get a look with open eyes straight ahead through the glasses.) She tips her head way back and almost faces the ceiling to see something straight in front of her.  She also tilts her head to the right shoulder as well.  In the last year, we’ve noticed that even WITH her glasses, her left eye is crossing inward quite a bit.  This is supposed to be managed with the prescription on the glasses, but it seems to have become worse.

It’s been one of those things that drives me nuts, but that I always feel bad getting frustrated about since it feels like it’s just because I’m vain about the zillions of pictures that I take with her nose in the air.

The reason why she does this is that she has nystagmus, or “wiggly eyes.”  This is just one of a few diagnoses that she has related to her eyes.  It’s been present from birth, though we noticed it more at around 4-6 months and then progressing more in the last couple years.  It’s gotten really severe, in that she often is tilting or tipping at 45 degrees, which is pretty significant when it comes to the problems it could create with posture and other issues.  The tilting or tipping is to find her “null point,” the place where the eyes do a minimal amount of moving. She is adapting by positioning her head because she is unable to control them as she wants to when she is looking at things straight on.

So today, after “stumping” our ophthalmology team for a while, or at least presenting in confusing ways during the last several exams, they were able to pinpoint that she has what is called Manifest-Latent Nystagmus.  This is good news because at least now we know where to look for our next step.  It’s not AS good, because the next step is most likely surgery. 

Granted, we’ve been through more than a few surgeries, open-heart being the most significant, and we’re not really afraid of procedures in general.  BUT for some reason, this one has had me more hesitant than the others.  Even the heart.  Because it’s her EYES.  I have real trouble considering the results of something going wrong with her eyes.  The heart HAD to be fixed for her to live, and somehow, that wasn’t so scary. It was the only option.  In this case, it does appear that it NEEDS to be done, also, but I still wish they weren’t going to mess with her eyes.

Dr. C, though she is VERY experienced and a lead of the eye center at Children’s, has not done the Modified Kestenbaum procedure that is required to help correct Braska’s issue.  But another doc in the group has done some and we’ll be seeing him on Monday morning.  Dr. L will be the newest member of our specialist team.  Dr. C also feels that the crossing that we see a lot in the left eye is also a result of the MLN issue and not actually true strabismus/esotropia.  I’ve read a lot about this today, and there seems to be a lot of evidence to back her up.  That’s why she has letters after her name and I don’t!

It was explained to me that the adjustments to the eye muscles will be somewhat rotational instead of the typical horizontal or vertical.  So her particular issue and the needed repair are definitely more rare than most similar issues.

Yay.  Because we can’t do anything normal around here!!

Dr. C did confirm with me that this is NOT a DS thing.  This is a nystagmus thing, and many kids have nystagmus without having DS.  It is not uncommon IN kids with DS, but what she’s dealing with now is not one of “those things” that just comes with having DS.

Chalk it up.  Her feeding issues are not DS (FAR beyond the “norm”), as well as a few other fun things that are part of life around here.  And now we add this new diagnosis…manifest-latent nystagmus.  No big deal, just something to learn about, address with the proper treatments, and continue to move on.

I’ll know more about timing for the repair after Monday’s appointment.  We appreciate your prayers for our girl and for our team of great doctors.  I’m very thankful that we have ready access to such a great facility and group of physicians.

Wednesday, April 13, 2011


This morning we got up a little late after some much needed extra sleep. After a super quick breakfast for the girls, we jumped in the car for school. We hurried in to the school, dropped Braska and hurried back to the van. Only to find that I set my keys down in Braska's cubby.

Back to the classroom and back to the car. Kinlee and I came to the Y for a workout since I don't work on Wednesday mornings due to feeding therapy at 11:15. So now KiKi is at Y school and I am on the bike pedaling while blogging about our crazy schedule lately. Loving my "new" super cool Droid for this and other reasons. Not loving the short battery life but I will adjust. Happily.

When I finish here shortly, we will head back across the highway to the school for feeding therapy and then home. With a likely stop by for a QT visit with our buds. Tonight it is back to training for me. More CPR and then first aid and O2. Done at 10 pm. Then likely a collapse for just a few minutes!

Life is nuts right now but I'm not regretting our decisions yet. Just adjusting with a smile whenever possible. Flexibility is SO huge. If you don't have some, get on it!!! Life will be more enjoyable!

Happy Wednesday friends!

Friday, March 25, 2011

A day in the life: Blown button, new job

Done with…

  • Early morning private OT session, sensory-focused, for Braska. Had to use or lose flex spending money from M’s soon-to-be-in-4-hours-FORMER-job, so we get a few weeks to see how it goes. I’d love to document this stuff and the reasons behind it so much better for myself and others… but alas…
  • Picked up Kidlet, little snoozalicious.
  • Girls’ Playtime while I got Braska’s meals for the next several days ready to go. Oh how I love a quality stick/immersion/hand blender. Pulse, Pulse, Pulse, Done.
  • Kinlee declined lunch and wanted to go to nap. Not that uncommon. Kidlet went down about the same time.
  • Don’t forget plenty of diaper changes all around and various feeding.

But then…
As I was preparing to give Braska her mid-day milk, via tube, I sat her on my lap and something was weird. Missing. The belly terrain was too smooth.
*eye roll, sigh, then hunt for the button*

It was found quickly, near the chair where she had been sitting…probably fell out when she climbed up.

Ever seen a Mic-Key Button with a blown balloon??

Pleasant huh?

In case you’re not familiar but curious, the part on the right of the above picture is the balloon, which is supposed to be inside the stomach, inflated with water once it’s in by the port on the lower left side. I always describe it kind of like an earring. Except you don’t inflate the earring post behind your ear. The tube connects to the port on the left side, when the little flap is opened.

Hmmm…that might be interesting though. The inflatable earring thing... Maybe later I’ll ponder that more.

Anyway, after more pushing and effort than I care to experience, and Braska agrees, in order to get the new button in (thank goodness I had one already in the cabinet for backup…I sometimes forget), we’re all set and she’s good to go.

If we ever get rid of that thing, she’s going to be one of those whose stoma just closes in no time when the button’s removed. So that’s good.

Now on to the rest of the day…

  • Short appointment for paperwork for the new job. Oh yeah, I didn’t follow up with that did I? I got the job from Saturday’s interview. Working part-time at the Y!!! I’m pretty excited! Evenings, weekends, front desk, you get the picture. The people there are great, from my perspective as a member, so I think it’ll be fun to work with them. Big props to my long-time friend Sarah for the tip and lovely reference!! Now we’ll have the extra income required to pay for medical insurance since M’s new job has astronomically high group benefit costs. We’re going with an individual family plan and it’s far cheaper.
  • Potty training seminar tonight, also dealing with elopement, specifically for kids with DS. Should be interesting. (Workshop day tomorrow for practical solutions in educating kids with DS. Both put on by our DSA. Bridget Murphy from the KC DSG is speaking.)

Friday, March 18, 2011

Stringing letters

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

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

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

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

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

Saturday, February 19, 2011

Kinlee-isms #4 in request form

To her father, while I was at a lunch with some friends...

While M was feeding Braska lunch. With no contextual prompts whatsover... Kinlee pipes up.

"I have an idea. We go to the park...and we slide...and we swing... and we cute... and we have fun."

I so wish I had this one on video. The reenactment presented by M did crack me up though. Maybe I should get IT on video.

Monday, January 24, 2011

Little feeding helper

KiKi wants to help Mommy with everything now.  Everything.  She wants to do all the jobs around the house that Mommy or Daddy usually does.

One of those things that she likes to do is to help put milk in my belly.  One day she decided to give me some all by herself.  I was just resting on the couch and she thought she would come and give me some milk.  She found my tube in the cabinet.  She got the wrong piece for the milk to go in, but that’s ok. She’s still learning.

Then she has to find my button under my shirt.

And she knows how to plug it in, too.

And after she did my pretend milk, she tried to find her button for some milk in HER belly.  But she only has one.  And she always wants it to fit in there…

She wants to have a second belly button just like me, but nope…KiKi, that’s MY thing!

Friday, January 7, 2011

Popping in for a sec

A few things to note…

  • I’m working on a blog re-do, to represent a different approach to things blog related as I move forward.  I hope to have it up this weekend. No promises.
  • Braska’s finished day 2 of a 3-day wean (tube feeding transition tool…measuring ability, not actually weaning) I’m documenting that over at her blog if you’re interested.
  • Tonight we had medical exams for new life insurance policies. I’m 5’2”.  Not 5’3”.  I’ve been fooling myself thinking I had an inch I don’t have.  But oh well, still just plain short.
  • We’re in the middle of setting up a special needs trust and doing our wills.  Hence the aforementioned updated life insurance policies.  It’s important, but it’s a lot.  I don’t mind the “someday I’ll be dead” thing…I’m good with all that completely.  But all the arranging and considering what we want for the girls, especially Braska, when she’s a teen and beyond.   Writing the Letter of Intent that specifies SO many details of what we hope her life will be like and how we want it to look as far as we can see. It’s hard to think like that. My brain doesn’t work that way.
  • Kinlee is such a funny girl.  She tells knock-knock jokes, she does impressions of other people, she has a few fake voices and distorted faces that she pulls out here and there for a laugh.  It’s enough to make us just stare at her occasionally.  The kid is not even 2 yet.
  • I really need to do another installment of Kinleeisms.  They are unbelievable. The girl has great sentence structure, pronouns, tense, proper use of possessives, and on and on.   She’s a little tiny adult, with the full ability for conversation and real discussion, and she converses CONSTANTLY.
  • Someone bought me a new pair of shoes yesterday. They are AWESOME.  I cannot wait to wear them. I have a lot of foot pain, so to find a shoe that’s classy looking AND comfy. Really honestly comfy!  I’m still blown away.  I even wore them around the house last night. Just because.
  • It’s amazing to me how something that has been long anticipated with excitement can become totally revolting in the split second of a condescending glance.
  • Tomorrow begins wildcard weekend.  Should be some fun football, even though the Bears have a bye this week. Enjoy!

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!

Thursday, January 6, 2011

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.