Friday, October 7, 2011

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

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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?

Tuesday, September 13, 2011

Longest in a long time

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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.

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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.

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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.”

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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.

 

 

 

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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.

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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.

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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.

 

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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.