Photography: Fall. Attempt.

This afternoon I tried to get some fun fall photos of the girls. But they were not all that… ahem… cooperative.  Well, Braska wasn’t.  Kinlee threw some leaves and called it done.  I did get a few that I liked alright.

  

Things I could write about

I want to go to bed. It’s late. But I don’t want to forget the list of things in my head that, in an ideal schedule, would be able to be mulled over via blogging… today was a full day.

~Braska was off school, Kinlee “on” school, stayed for chapel with Braska at “the other school” to see her buddies.

~Dashed from chapel to Braska’s parent/teacher conference. It lasted 2 hours. Not bad, but not fully happy. Topics: reg ed time, transitions, behaviors, motivation

~Then ran back across the county to “the other school” to help with lunch and let B enjoy some more time with her friends at lunch and recess.

~Left from there to get downtown to Children’s for newest specialist on B’s team… urology. Trying to rule out medical issues for toilet training frustration. Ruled a few in. Topics: nonemptying bladder, wrong messages between bladder and brain, can be corrected and quick (per dr).

~Straight back to pick up K from Spanish, stopped by physical therapy location with one of very few PTs who works on what B needs help with.  Went by pharmacy for new med.

~Finally made it home to fix dinner and brief M on the happenings of the day and our new list of homework.

More on these later….good night.

Tomorrow=Heart day + ear day.

Tomorrow is Braska’s 6th heart day.  She’s been all fixed up, cardiologically, for 6 years now.  Hard to imagine.

To celebrate, we’re going to take her back to the hospital and put her under general anesthesia just for fun. 

Not.

But she is going under.  She’s having new T-tubes put in tomorrow morning. We report to Children’s at 5:45am. 

I get up at 5am each weekday morning, but to get up and ready, get her up, and drive the 30 mins to the hospital, all by 5:45… that makes the morning a little earlier.  Here’s hoping I sleep well in the next 6.5 hours.

Have a great Thursday!

Simulpost: What? A post? Don’t pass out…

I know I’ve been MIA. I know that my readership is basically nil. But I know there are a few of you who may still happen by.

So in this moment, as I sit at McD’s after a very healthy and balanced lunch, I’ll pause to post instead of logging in to work for a few minutes.  Don’t you feel special? 

Wait. Maybe you want to wait til after you see what overly-awesome and super-interesting things I have to share first.  Then you can be the judge of it all.

Why am I at McD’s? Good question. It’s not a place you find me often at all. But it’s close to both of the schools where my girls are this afternoon, and I didn’t have a long period to go do something involved, so lunch and some quick internet time was about what fit.

Both schools? And in the afternoon? Don’t they go to the same school and isn’t it half-day for mornings?  Well, let me back up a bit.  We’ll see if I can get it explained in the few minutes I have left. 

Oops… Happy Valentines Day.  Didn’t want to miss that. I am thankful for all my online valentines.

Now, the backstory. Over Christmas break we started the process of “dual enrollment” for Braska, so she could attend an elementary school in our local district in the afternoon while continuing to go to her half-day kindergarten in the mornings.  The process has been beautifully smooth. We are really blessed, I admit.  The team at C School is wonderful, they basically let me set up her schedule exactly like I wanted, and I’m really pleased.  We’re doing this just to boost her in the areas she’s struggling with. And so we can get some additional therapies as well.  We’ve been on our own with therapies since August, and much of that time she’s had none.  She’s doing GREAT at LWCS, but some concepts are hard for her (math!!), so this is what I thought might give her some help.

She’s just going to be in special ed in the afternoons. There’s 5 boys in there. That’s the whole class. She’ll love that!  She’s a fan of boys, especially since one of her faves is in there, too.  She’ll go to specials (art, music, etc) IF she doesn’t need to have a therapy during that time.  My priorities are academic instruction and therapies.  I don’t worry any about inclusion in that environment because she’s with her gen ed class all morning and she does specials then.  I like that it’s a lot like tutoring in the afternoons, with therapy thrown in. What’s not to like, if you ask me!  She’ll go Tues, Weds, Thurs for the afternoons. We’ve moved her private OT, ST, and PT to Monday afternoons or Friday afternoon.  (Plus, of course, cheer on Sun and Mon evenings, swim on Friday evenings. Cheer competitions on Sat or Sun once or twice a month and Learning Program on Saturday once a month, too. So she’s all booked up.)

So today is Braska’s first day of attending C School in the afternoon, going directly from pick-up at LWCS to C School. 

This morning I took both girls to school at LWCS where they both go 5 half-days each week.  They love it. I love it.  It’s awesome. Period.  Can’t even tell you how much I love that place.  I dropped them off at 8. Should have gone to work for a couple hours, but decided (with my boss’s permission) to forego trying to get out there, set up, work for maybe 45 minutes, then tear down and leave again to get back for the Valentine’s parties in both girls’ rooms.  So I went to WM to get pink icing, my contribution to Braska’s party, per assignment.  I also picked up a precious pot of tulips for B’s teacher and a little mini-rosebush for K’s teacher.  And a super neat bright bouquet for the office staff/principal.

Got back to school in time to deliver each of the florals, then off to set up for B’s party.  Then bounce across to K’s party a couple doors down and around the corner.  And back and forth. Repeat.  Both girls had a great time. We packed everything up and headed out at dismissal. Drove across town to F School and dropped Kinlee.

F School is a local church preschool/parent’s day out program that she went to occasionally last year.  We like the people there a lot.  So nice.  And since Braska “gets to go” to a second school, Kinlee decided she wanted to as well.  She got some money for her birthday last weekend, and this is what she likes to use it for.  Win-win.

So we dropped Kinlee and her lunch box right in time for lunch with her friends.  And in time for the second Valentine’s party of the day.  She’ll be there til I get her on the way home from Braska’s pick-up.

Then it was on to C School. I fed B in the car (lucky for me she loves greek yogurt. woo.) and in she went. Her buddy Jack is in her class at C School, and it was so funny to see him look up and see her walk in. Totally like, “Huh? What are YOU doing here?” She went right to the bead toys and activities and didn’t even look back to see where I was. 

So I came to McDonald’s to spend an hour eating some lunch and waiting til time to return to Braska’s class Valentine’s Day party in a few minutes. 

All fits just perfectly, right?!?

Tonight, I may collapse. But then again, this kind of day is more the norm than a rarity lately.  I drive almost 100 miles a day often, and that’s not even leaving the county.  Most of that is east and west and east and west on 70.  Thankfully, most everything is right off of the interstate, which makes it easy. Just repetitive.

We’re going to get Daddy’s favorite pizza for dinner, watch Beauty and the Beast with the girls (their first time!) and head to bed early.  Sounds like a lovely Valentine’s evening. 

Time to head to the 3rd party of the day… hugs to all your valentines!

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.

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.

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.)

31 for 21: A bit more about feeding Braska

There are a couple more things I wanted to touch on, and I thought that Cate’s question regarding this post was an excellent place to start…

I totally hear you on patience. It's hard to go at someone else's pace. Do you have something to do while she's eating? I read your post thinking that it would be good knitting time. That's my choice for something that makes me feel like I'm not just waiting, but I'm still engaged and paying attention. (Thanks for the input and the question, Cate!)

One of the most difficult parts for me right now IS the waiting, but it’s a different waiting. Braska can feed herself with a spoon, but it’s very slow and she will only do one or two (rarely) bites at a time. And remember, we’re talking purees here… yogurt, mashed potatoes, blended meals…things that fall off the little spoon easily.

So there is a lot of guiding, assisting with proper hand position so she doesn’t drop the spoon, helping her get the spoon back IN the little bowl, etc.

One more clarification… at this stage, I do NOT blame the DS for her feeding issues. I don’t consider this a “DS thing.” She is so far past even the delays that can be typical-to-extreme for DS that I now don’t even give DS the credit for her issues. Yes, it was initially the heart defect that interrupted feeding progress, and yes, her very low tone plays a significant part, but I believe, and some of her caregivers agree, that at this stage, she is dealing with a combination of issues that outweigh the “kids with DS have feeding issues sometimes” philosophy.

Working with Braska on feeding is a very active task, yet with a lot of breaks, though they are short.

For instance…if she starts out with a blended meal of meat and veggies, she will usually—when prompted a couple of times—pick up the spoon and put it to her mouth. She doesn’t always get it in her mouth fully, but she’s getting better. But because her fine motor/hand strength is SO lacking, she has trouble even managing the spoon correctly and then moving her wrist around to get it in the right place. This is really work for her.

So after one bite, she will leave the spoon in the bowl. If it were up to her, she’d sit there for hours before she’d attempt another bite. Hungry or not… and she really doesn’t even register hunger in a realistic manner anyway. So I can prompt her to try again, “scoop and bite” as we call it, and SOMETIMES she will do it again. Mostly she will just look away and ignore me.

I generally will take over for a bit, feeding her, and she accepts the food relatively well. We wait several seconds, if not 25 or 30 sometimes, between bites. I reload the spoon right away and hold it out in front of her, ready for her to move toward it and open her mouth. But there’s still the waiting. She needs the time to clear her mouth and be ready for the next one. I offer the next bite, and she will either take it or she will say, “Nofankyou” in her oh-so-polite-but-not-budging manner. Then we either try another something, like offer a bite of yogurt instead of her “entree” food, OR we attempt a drink.

Drinking is a more difficult situation. She does not like to take sips. And when she does drink, that’s all it is. It’s very much an art to getting the cup held/tipped in just the right manner so the milk is at the rim of the cup, because when she opens, you have about 0.0003 seconds to get something in there before she closes again. Occasionally she will be more willing to accept a little, but mostly she prefers not to mess with a drink at all.

And yes, we’ve tried every cup, bottle, straw contraption, and other possibility out there… I’ve got boxes of barely-used items to show for it.

Once she tires and won’t cooperate to assist with the meal any longer, I take over and feed her the rest. This doesn’t mean that she’s suddenly happy, like she got her way not having to feed herself, she STILL doesn’t want to eat. But she is getting much better about accepting food by mouth when I feed her, and her pace is picking up.

So you can get a picture of how it goes. It’s not really feasible to DO anything in the midst of the process because I’m always doing something even if there are little tiny pauses. She is not in a place where I can be near but not involved.

Very rarely, in the morning, when she’s eating yogurt—her favorite thing, if there is such a thing—she will feed herself 6 or 7 bites over several minutes while I’m preparing Kinlee’s breakfast. But it will always come to the point where she just won’t/can’t continue, so I help her finish.

Now let me be clear about something important… This process I describe is frustrating and hard, it’s taxing on her and on me, but we are FAR ahead of where we started, and though the going is slow—VERY slow—we ARE…SHE is… making progress, and I’m very glad about that.

But I hope this helps you get a picture…where she is on the spectrum of “feeding issues.” Many kids have problems with feeding, and the issues vary greatly, but when someone says to me, “Oh, I get it, feeding is hard. My kid will only eat grilled cheese, spaghetti, fruit, or crackers, and just drinks milk all the time,” I understand the frustration, but I have to chuckle a little inside, because we are still YEARS from that level. She still does not know how to chew. Period.

Each challenge for each kid is real, it’s a hill to overcome. In this particular area, our hill is just really long and steep.

But she’ll get there… if I can just hang on for the ride.

31 for 21: 2 meals 1 day. Very good.

Braska took two of her meals today orally. 

What’s up? You’re just sitting there looking at the screen like nothing’s happening here.  Let’s try this again…

Ahem.

Braska took two of her meals today orally!  Do you get that??

She consumed, by spoon and via her mouth, enough food to count for a meal. Twice. In one day.

This is HUGE!

Has she done it before? Yes.
Can she do it regularly? Probably. If Mommy will get in gear and do it right.
Is this a normal occurrence? Nope. Not at all.

Braska CAN eat enough calories to be “a meal” if given the right combination of circumstances.  The elements are not often aligned to make that happen. Liquids are another story, but she did take almost an ounce over about 25 minutes of feeding time and 12 to 15 sips.

The news is big. But it’s really largely because Mommy set aside made the time to do it.  That’s big.

I rely on the tube because it’s no hassle, no mess, super fast, and it gets the job done.  Those are all things I like in just about every part of life.  But I know that we have to make room in the schedule to help her get used to taking in real (though pureed) food and drink.  A meal in this scenario takes about 40 to 50 minutes total.  That’s a lot of time to set aside and be available to sit and wait. Assist here and there.  Feed manually for a while.  Allow breaks to happen. And go again when she gives the cue. 

I have to reign in my disciplinarian self when she pushes the food away. I have to give her time after she refuses to take a drink for the 8th time.  I have to try NOT to speak too firmly to her when she swings at the spoon as it comes. I’m learning from the pros that this isn’t the time for confrontation.  I need to make it a good experience.  So much thought. Just to eat. (And we’re not even CHEWING yet!)

All that to consume about 6 ounces of pureed food. Tonight it was pork roast with veggies. She really likes that one.  Followed with a chaser of yogurt, always a hit.

I need to get this. I need to make this a priority. I need to slow down, even more than the “slow down” I’ve done in the past few weeks schedule-wise, and really give her the opportunity to do it.

But goodness… If you ever need to be shown just how impatient you are, and I am in no way delusional about my impatience, just try to feed a severely averse child who could NOT care less about food.

We’ll get there.  But I may not make it with my sanity intact.  Lord willing, I can hang on!

31 for 21: More about eyes

If you missed the previous blip about Braska’s eye appointment, you can start here. This is gonna be a long one, but if you have an interest in tots and odd vision issues, this might be, well…interesting.

As I mentioned as a teaser the other day, I had a couple of concerns that caused me to make the appointment we had on Monday. One was the tilting chin-up habit that Braska’s been perfecting for over a year now. Though it has become more persistent and more extreme in the past few months. The other issue is that she has been unable to sit on the couch and remain engaged in her shows. She has been requiring to be closer to the TV than ever before in order to stay tuned in.

She has her yearly ophthalmologist appointment with Dr. C coming up in early December, but I decided these things needed addressing sooner than that. Plus I wanted to make sure that if we needed new glasses, we could get that done with what was left of our flex spending account.

So off we went… Dr. S (optometrist in Dr. C’s office) asked how we were and what was new, and I launched into my info-sharing mode, without overwhelming or sounding fatalistic. A delicate balance, but an important one, as I learned in years of hearing doctors express frustration about the way people present issues back when I was managing practices. I explained how she looks down her nose at everything that required detailed attention. I reminded him that we had addressed this previously with Dr. C and she didn’t feel it was visual, but instead thought it might be a strength issue and recommended we talk to PT about it.

After last year’s appointment, we DID investigate, via a variety of other modalities, the cause of this habit of hers. We talked to the PT, and it was determined after evaluation that this was not purely a core strength issue, but that since Braska does, in fact, have a VERY weak core, we would focus on trying to increase work on that area in order to help her posture and ability to hold her head properly. We also talked to OT who also made adjustments to their exercises and activities to include more things that caused her to focus in various places and at different distances, hoping to help with her visual motor as well.

So neither PT or OT found the issues to be directly in their wheelhouse, so to speak, but they both agreed to assist toward the goal.

I have felt from the beginning that this was more visually related, as in Braska’s vision—her ability to see, not just visual motor. She has nystagmus, which is not uncommon, and looks like her eyes are wiggling back and forth when she’s focusing. This wiggling is much more easily controlled when she is looking down.

For those of you around from WAY back in the day, Braska was totally enamored with her hands for quite some time around 3 to 5 months of age. She was evaluated by a visual therapy specialist and it was found that she was finding her “null point,” or the place where she could make the nystagmus stop and see most clearly. She generally held her hands down by her chest and peered at them for long moments at a time.

What I found when I did my own unprofessional testing recently is that Braska’s nystagmus is once again still when she’s looking down her nose with her chin tipped up high to watch something. When we hold her head in a proper posture position so that she’s looking straight forward at the intended target, her nystagmus is quite obvious and she doesn’t stay focused on the target for long without looking around and then returning to the target.

The other element of this head-tipping situation is that when I held her in the proper position, encouraging her to look straight at the target, she had to raise her eyebrows to get her eyes to open enough to see straight ahead. Like she didn’t have the strength to open her eyes all the way. She CAN open her eyes, don’t misunderstand. But in order to watch one of her videos or follow along with a book for several minutes, she cannot hold her eyes open in that position without looking away, resting by looking down, and then trying again.

These findings brought our OT/feeding therapist to encourage us to have her evaluated by an OT who has specific experience with vestibular and visual motor. We did have this evaluation done, and the OT was great. She found what we’d suspected, that Braska’s low tone (hypotonia, common in DS) is causing her to struggle to work her muscles around her eyes and in her face to USE her eyes as she should. Crazy stuff, I think. This OT recommended specific vestibular therapy and strength exercises focused on the muscles used around her eyes. Unfortunately, our insurance wouldn’t cover these things at that location, so we have to start over again somewhere else and hope we get someone who knows about this sliver of the OT element.

I could go on for days, and it might seem I have, but I’ll sum this part up like this… things that don’t seem right often aren’t. I was convinced that this was not just a quirky behavior or low-tone slouching issue. And as it progressed, I insisted it be investigated. I’m very glad I did. Though we’ve still got some ground to cover to make headway, I’m pleased that professionals are seeing the problem, addressing the underlying issues, and are willing to help us find a plan that will benefit Braska. That’s the primary goal, of course.

Dr. S was very open, understood where we’ve been with this, asked great questions and took lots of notes. He will be reviewing the info with Dr. C and when we see her, and probably him also, in December, we’ll be going with photos and video in hand of Braska in action with the tilting issue, per his request. She did “perform” well for Dr. S on Monday, as he put in a video on the TV in the room and she did just as she usually does. He played with her position a bit—it was Elmo so she didn’t mind—and he tried to hold her head up, manipulate her position, etc. He was able to get a great example of how she lifts her brows, how she cannot stay focused on the show when forced to watch straight on, and how her nystagmus changes with her position.

All this info will be compiled and we’ll come up with a plan soon.

Seemingly uninteresting in the situation was my second concern, that she has to sit so much closer than she used to when watching something. He also did some super special scientific testing on this while she was watching Elmo, rolling her forward in the stroller to see where she engaged. And after dilating her eyes and seeing that her prescription has changed quite a bit, that fit as well.

So we have answers, or at least the right start toward finding the answers. That’s good. I felt great about how the appointment went, and I let him know that.

Now we wait for the new lenses to be done. We evaluate how the updated prescription helps, and we return with new date in December for consultation with Dr C on the situation. I’d like to avoid another surgery, but it’s always a possibility. We’ll hope that we can come up with a non-invasive approach that works.

If you have any questions about this, don’t hesitate to ask… eyes are something we’ve had experience with. She’s had her glasses for almost 3 years! Wow!

Best option for learning

Well, well, well… it’s been a very interesting couple of days.

Thanks to all of you who have given input on the afternoon school versus nap situation.  I’ve really appreciated all the different perspectives and it’s been good to think through a variety of things.

Before I give you the latest, I’ll answer a couple of questions…

Bedtimes: The girls go to bed between 8 and 8:30p usually closer to the 8:30p mark.  It’s rarely much later than 8:30p unless we’ve been away from home for the evening for some reason. 

One thing to consider regarding bedtimes with Braska is that she is tube fed for the majority of her nutrition, and her intake is limited to the volume she can hold at any one feeding.  We don’t use a pump, so she just gets bolus gravity feeds 4 times a day in addition to whatever she might eat orally.  But she ALWAYS needs a feeding right before bed to get her calories and fluids in for the day.  She simply cannot tolerate all her required amounts in volumes that would allow us to cut the bedtime feeding yet.  And because we have to allow at least 4 hours between feedings in order that she can keep it down, this affects when she can go to bed.  We try to work it out so that her last feeding is at 8pm, but if the schedule gets off at any point in the day due to errands or just life in general, then it can sometimes be a little later.  There’s just not hardly any way to make her last feed before 8pm. The 8am 12n 4pm and 8pm schedule is the one that fits her best.  So we can’t really put her to bed at 7pm, for instance.

I hope that makes sense.  We just have some additional restraints on our routine than most.

School options: I had hoped I could talk with the school, explain our situation with naps, illness, and focus issues in the afternoon, and they would be willing to make some adjustments, but that wasn’t the case. 

So here is where we are right now… according to a representative from her school, she may attend the afternoon class or no class.  I was told that they are not willing to move her to a morning class and that they ARE offering an appropriate option for her.  Clearly, I disagreed and told them so. Politely but firmly. 

I’ve decided that the afternoon class is not an option at all.  After much deliberation and prayer and consulting others in like situations, I’ve decided, and M agrees, that she would gain no benefit from the afternoon class and would only be in a position for negative effects of the change—in reduced sleep, inability to perform well at all during that time period, and increased concern for illness, which has already been excessive since she started in November.

Beyond that decision, I’m still in limbo.  The representative from the school couldn’t offer me any info about where to go next.  I tried to contact the district (our district contracts with this specialized school for Early Childhood Special Education) but I’ve not received a call back. They aren’t in every day at this point, apparently.  I’m guessing I’ll need to reconvene the IEP team for a meeting and set up new placement for itinerant services.  This will mean that we will receive the therapies but no class time.  I’m hopeful that they will not make that difficult to achieve. 

My feeling right now is of disappointment.  It’s not anger, though I’ve been close.  I’m just so disappointed in this school.  We chose to live where we do, precisely where we do, in order to be in the area that utilizes that school for ECSE.  We heard many good things, and we have experienced many good things since we began back when she was 2 and going 1 morning a week.  Almost everyone we’ve dealt with has been wonderful, so helpful, very nice, and I count many of them as friends.  I’m disappointed because we have now had an impasse at a point that doesn’t seem that difficult to resolve.  At least to me.  But I’m just the mom.  I really believed they would be more willing to be INDIVIDUALIZED in their approach.

I kept being told that they can’t “shuffle kids around” (to which I responded that I’m not interested in “kids” I’m interested in my kid—one kid—and at 24 lbs and 3 years old she is not that hard to “shuffle around”) and that the schedules are set and that they have to have SOME classes in the afternoon, and kids will adjust.  Well, of course they will adjust.  But I don’t think I want or need Braska to adjust to this at this moment.  It’s not necessary. She is 3.  If she wants to nap and she needs to nap, then a nap she’ll get!

Braska’s teacher (last year and assigned for the coming year) is great. I’ve talked with her, and she is very understanding, but she’s not in a position to bring about changes in this situation.  I had offered the option to the representative at the school to have Braska be in her teacher’s morning class, the “early 3’s” which is the age that she was with this last year.  She would still be “behind” them, so the peer modeling element would be present.  But nope. No dice.

I could probably raise a real mess at the school and with the district, get letters from everywhere, go right up the chain of command to get her in a morning class.  I’m quite sure I could do it if I wanted to.  But in the last couple of days, I’ve learned I don’t want to. (Though I have considered taking it to the top just to pave a way for some other family who will come after us…but I don’t know if I have that energy right now.)  Braska missed SO much school this past year, and we would most likely be looking at the same thing again, because her habit of having her hands in her mouth so much is still continuing, no matter what intervention we try, and as long as she is doing that, she will continue to get everything that comes into the room.  Why go through all the hassle for this and then just have her miss every other week again?  Why deal with all the illness as it trickles down through all four of us and even causes M to miss work?  It’s not worth that. 

I say this alot—She is 3.  There is time for school.  She will go to school, I have no doubt about that at all.  But all signs show me that it’s not the best choice right now.

So it looks like, at this point, Braska will not be in school this fall. I hope we can work out the itinerant services for therapies, but I won’t send her to school JUST for that if it means compromising on all the rest of my issues.  I’ve talked with the pediatrician about taking a break, and maybe that’s what we’ll do.  Of course, we’ll continue to work on the things we always work on.  

Maybe we’ll only take off the first semester and then revisit the situation.  But for now, that’s where we are.  I am a little nervous, but I’m glad for some clear direction.  She will miss going to school…she really does love it.  But this is for the best, and the BEST learning option, in good health, is what I’m interested in right now.

Wow. What a difference a few days can make…

Comparing comparisons

Today I received an email from a blog friend (who I didn’t recognize immediately…sorry!) asking a question that prompted what I have been meaning to post about for a while.  So I asked permission to share the email and response, removing identifiers, for a couple reasons.

1. I don’t like to rewrite things when I don’t need to.  Who has the time?
2. I know there are SEVERAL of you other blog buddies out there who can relate to this situation, and I’d really love to share your input with her as well.

So read along, and please share your thoughts…if you want to do a post of your own, or you already have one that’s relevant, leave a link in the comments. Thanks.  Online support is VITAL, I think. I’d be lost without all the things I’ve learned from the other “DS moms.” (I know…not PC.)

______________________________________________

Her email:
I have a 2 1/2 year old who has down syndrome, and an 11 month old who is 'typical'.

My question for you is: how do you not compare them? At 11 months, V is doing more things than R did at 18 months. 

It scares me how fast V is learning and reaching milestones.  I am ashamed that I even compare them at all.  It's so hard to watch R at her therapies, struggling to climb stairs, or say a word, or stack a block, yet V can do those things and we haven't even showed her!

I'm sorry. I don't mean to vent. I just thought you might have some advice for a mom with an older child with special needs and a younger child who will soon surpass the older.

Thank you.
_______________________________

My response:
Hi,

I’ve been debating a post about this, formulating it in my head very recently.  Funny that you happened to write today.  I don’t know that I have any great advice, but I’ll share how it looks for me.

As you might know, my girls are 27 months apart, Braska will be 4 in November and Kinlee is a few days away from 17 months.  The simple answer is that I DO compare them, sometimes just because they’re my kids and I think every parent marvels at how different and how similar their kids are, no matter what their chromosome count is.  Sometimes I enjoy looking at how Kinlee at 17 months is the same size Braska was at almost 3 years old.  It’s fun to me, not to Braska’s insult, but just because I enjoy their differences.  I love to take pictures of Kinlee in things that Braska wore, though now, they are wearing many of the same things!

That said… there are times when it’s not as “cute” to compare, and I’ve found that recently I’ve been faced with the hardest issue.  It surprised me, but I’ve had to deal with it a little more than I expected.  You see, Kinlee and Braska basically started walking at the same time…Kinlee was 13 months, Braska was 40 months.  Braska has progressed well, is getting stronger, and has gained better balance, but she is still very wobbly and very much a “new walker.”  Kinlee sped right past her, handling steps more skillfully, climbing more, balancing better, almost running at this point.  Braska is significantly delayed in her gross motor—it is one of her toughest areas, as she has severely low tone.  We know this, we knew this would happen, and it was ok.  I’m not too bothered by the walking issue.  BUT in the past couple months, Kinlee has taken off in her speech and language.  This is Braska’s STRENGTH!  Braska’s done extremely well with speech and enunciation, especially in the realm of kids with DS, and we’ve been very proud of her.  We work with her, but it is clearly a natural strength of hers.  With Kinlee fast approaching Braska in the speech “race,” I realized the other day that soon, ALL of Kinlee’s skills will be beyond Braska’s.  And that was hard for me.  I could deal with Kinlee passing her up in the weak areas, but once she overtakes her in the area of strength…what else is there?  She already uses “yes” and “no” more appropriately than Braska, who only this past week has started using “no” when she has a preference that would make it the right choice.  She can make her requests, follow directions, and understand a more complicated situation much more easily than Braska can.  It’s all a little hard for me to accept, but yet I am excited Kinlee is doing so well.  How to live in both of those worlds?!?

I never expected this to be a concern for me.  We don’t really struggle much with what Braska “can’t” do. I’m fine with her pace of learning, I expect her to do her best, but I don’t care too much about where she falls on a chart or in comparison to other 3-year-olds.  And yet, I’m hit by this situation of Kinlee preparing to fly right by her in the milestone sprint she’s on.  What to do about it?  I don’t know.  I must refocus back on the fact that Braska is a phenomenal kid, just like she is. She is by far the sweeter, more compliant, consistently happier, easier to deal with, and more loving child.  And I love that about her.  Kinlee is pretty great in her own right, but she’s a challenge in many of these areas, which I think is probably to be expected, and yet we don’t really KNOW what to expect. 

I do SO get what you mean about how the younger can just GET things, like without being taught specifically for hours and hours before producing a result.  It’s been amazing to watch Kinlee surprise us over and over.  Last night I took her to the store with me, and she looked over at the side while I was choosing a loaf of bread and said “Buns!”  And she was right.  They were hamburger buns.  Something we NEVER have in the house.  I think we’ve used them once at her grandparents a couple weeks ago… how in the heck did she know that?!?  And animal sounds… we basically were reviewing with Braska, as we often do, just playing the “what does it say” game, and Kinlee knew them all right on after the first time through!    I can’t get over how one day she doesn’t know (fill in the blank) and the next day she knows it completely!  Braska has serious feeding issues, is on a g-tube, and isn’t anywhere near feeding herself, because she doesn’t really want food in the first place.  Kinlee was given a spoon, shown how to use it once, and she has a decent grasp of it.  Not that it’s perfect, but she gets it.  Amazing!  We often refer to Kinlee as the “superhero” of the family.  But then Braska is the one who has endured open-heart surgery and thrived with beauty and grace throughout the whole struggle!

Would I want to change Braska to make her “keep up” better?   Nope, not at all.  I’d love it if she were to be able to learn more easily or grasp concepts more fully, but I don’t know what other things we might lose in that adjustment that I’m not willing to let go of.  I have come to believe, once again, that she is precisely who she was designed to be, and I can only adore her for being so purely that.  There is no pretense to her, she doesn’t try to be what she’s not.  She’s 3, she’s a girly girl,  and that’s all that’s there.  And I like it that way. 

I don’t know if this helps any, but I can only encourage you that there are a lot of us out here who are in the same boat.  I have a few blogger friends who have a kiddo with DS as the oldest and then another one within the next couple years.  It’s amazing how similar our stories are, and yet how we each handle it with our own style.  If you wouldn’t mind, I’d love to post your question (names removed, so you wouldn’t be identified at all, if you like) so that some of the other moms in this position could offer their insight as well.  Would that be ok with you?

The day that Kinlee uses her first full sentence in a more concise and language-appropriate way than her sister, I’m going to have trouble with it, even while I celebrate her accomplishment.  I hate to see Braska be truly “behind” her little sister, but I know that Kinlee is going to be a great leader for her to follow after.  Braska will benefit greatly from Kinlee’s being “ahead” of her!

Many blessings… love them like crazy, and celebrate them, no matter how quickly or slowly they got to the sweet spot. :o)

_____________________________

How would YOU answer the question??

The germ count

As of right now, we are healthy.  That’s very nice. The girls are well—or as well as Braska can be with what is apparently allergies at this time of year, so still snot persists—and they are nearing their “normal” demeanors again. 

Right at the moment I can’t remember what I’ve updated about on here and what I haven’t and I have very limited time to throw some info up here, so I won’t go hunt it down. If this is a repeat, please pardon me.

Braska is due for tubes in her ears. We learned this at the end of February and were not at all surprised.  Though she made it her first three years of life with not a single ear infection, she had at least 4 in the first 3 months of school, so tubes are in order.  The ENT recommended that we get a sleep study first to see if we would just do tonsils, adenoids, and tubes all in one anesthesia trip. Sounds good to me. The sleep study was at the end of March. (Still no results…grrr. That’s another story. I’m going to be making another in a long string of calls this morning.)

To my chagrin, the ENT either has way too many patients or way too little time scheduled for OR procedures, because suddenly, when we wanted to schedule for a surgery date, they gave us June 2.  Not acceptable.  So we began to check out some options, including restarting with another ENT and still getting the whole process done in less time. But in the nick of time, I was told that there was a cancellation and we could have the slot, the first week of May.  I took it, and we resigned to the fact that we’d have to wait til then for the procedure.

Due to our string of ear infections, strep, hand/foot/mouth disease, and random other fun germies, our pediatrician recommended this week that we keep Braska out of school until her surgery, just to be SURE that we don’t have to postpone due to another little illness.  If we have to reschedule, it would probably be December before we get in, by my calculations.

Therefore, this week I’ve been talking to lots of people at her school, the district coordinator, therapists, etc.  We’re trying to work out a way for her to go to school for therapy only and in environments that we can control as far as exposure/cleanliness.  So I would take her up for therapy services at regular times for the next few weeks.  At this point, we have speech on the calendar, but I’m waiting on the rest.  OT/feeding is my primary concern, since Braska’s been making progress with Sue, so it’s the one I’ll work the hardest for. (Excuse me…for which I’ll work the hardest.   Good grammar can be so formal.)

We’re hanging out at home in the meantime.  The girls are playing fairly well, though they sure do get on each others nerves lately, and mine, and Belle’s, and vice versa in all cases…close quarters we have here, and when we’re all trying to accomplish something different on our personal agendas, it gets heated.  We’ve made a few trips to the library, with limited handling of books.  Braska has asked almost daily to “go school today?” and “fun at Jack’s house!” (She actually says it like that…there’s nothing but fun at Jack’s house apparently!)

For now we’ll take it easy, enjoy the nice weather, though we can’t really use the beloved attic fan like we would prefer since Miss Snotty only gets worse with all the crazy high pollen lately.  We’ve had her on Claritin which didn’t seem to do anything at all.  We now have her on Zyrtec, but it appears to make her really crazy inside and she acts out strangely.  So I’m not really sure we’ll continue.  She hasn’t had it last night or today, so we’ll see how she does.

That’s where we are. Not all that bad, not all that fun. But I’ll take it over antibiotics and coughing and fevers and whining (more than usual, on Kinlee’s part) any day.

I now return you to your regularly scheduled day. Thanks for tuning in.

Fighting for feeding

Ok, so it’s not so much a “fight” but it has felt like it a little in the last couple days.  If you didn’t see the post on Braska’s blog about yesterday’s feeding demo (and if you want things to make sense) you might want to start there first.

Today the goal was to talk to the contact at the school and Sue, a superb OTR/L with excellent feeding skills and experience.  She was our OT for about 3 months at the end of the summer, right before Braska’s transition out of EI.  She is wonderful, as a person, with Braska, and at what she knows as a professional.  I wanted Braska to stay with her when starting school, since Sue works there as well as privately, but the school is set up so that each classroom has an OT who works with the kids in that room.  Since Braska wasn’t in one of Sue’s rooms, we went with the OT in the room.

 Let’s just say that has not worked out the best.

There’s a lot that could be said about that, but I’ll leave most of it alone except to mention that this is actually great timing.  I was only becoming aware of some concerns within the last couple weeks, so a change now is great.

Sue didn’t work with Braska on feeding when she was our OT. This was at our request.  At that point we were still under the impression that Braska’s issues were behavioral, for the most part, and so we weren’t doing focused feeding therapy at that point, trying not to “push her.”  Oh what I wish we’d known then…

Anyway, the good news is, for right now it seems we will be able to make the changes needed to get Braska back with Sue and working specifically on feeding.  We’ll be trying to make this work in Braska’s school schedule on the days Sue is there.  But if that doesn’t work, we’ll possibly go early or something like that to work on the oral motor specifically.  And if all else fails, we will see Sue on a private basis outside of school.  In fact, depending on how receptive Braska is and how it goes initially, we may do both if we can handle it financially. 

We have a lot of lost ground to make up.  But I was so encouraged by the fact that Sue wants to work with her and is sure that it’s not “too late.”  Her muscles can be trained and what behavioral habits have been learned are not too deep to relearn correctly.

We will also be developing a plan to includes Braska’s ST, who we really like a lot.  Ann works so well with Braska and Braska responds well to her. This way they will be coming at the oral motor elements from different directions but working on much the same skills, used for different things.

I’m hopeful that things will be righted soon, and I’m glad to know that we do have good people available.  Of course, I’m still frustrated that we were on a wrong path for what seems like such an important part of her young life, but I have to let that go. 

If I could hang out in NICUs and tell parents in our position NOT to take kids off the bottle completely, even if it just means letting them take 5 or 10 cc with the bottle before tube feeding… oh how I wish we’d have had someone to clue us in…  what a different picture we’d have now.  But it doesn’t work that way.  I can only help those who come behind us, and every child is different, but it’s worth sharing our experience so people can make a more informed decision.

Hopefully, over the next few weeks we’ll see some exciting things.  I acknowledged to Sue that we are willing to take the risk of regression in oral intake to get things done right and help Braska to get where she needs to be in the end. In other words, we may have to take some steps back before taking steps forward. We’ve always been hesitant to have specific feeding therapies because Braska would then refuse to eat for days or weeks at a time after something new was presented in therapy.  But now, I fully believe that we need to back up and do this right.  Teach her the right way to use her mouth and tongue and all the parts around them.  We need to help her eat properly and it won’t be such a difficult thing for her.  THEN maybe she will want to eat as it gets less difficult because her oral motor skills are better.  So if we must rely on the G-tube solely for a while, so be it.  She’ll get her nutrition and we’ll start the journey to being rid of the tube eventually. 

A journey I thought we started long ago, but we were following the wrong map.

***As I was proofing this, the school called.  They are willing to check out the options, create a plan, and help us make some changes to get Braska the therapy she needs.  The ball is rolling…I’m so glad for that. 

****Oh my goodness.  As soon as I posted this, the school called back.  They already have discussed with appropriate people and we have a plan in place.  Woo Hoo!!!  Sue will be handling the oral motor part of Braska’s OT (30 mins a week) and the classroom OT will be handling the fine motor part (also 30 mins a week).  I’m pleased with this and I hope that it works out as well as I expect it to! Yay! 

Thank you, God, for presenting and then solving a problem I wasn’t even aware of…and in short order.  Awesome!

New experiences coming right up

(This is a scheduled post…so I’m writing it Friday night, but you won’t see it til Saturday.  That’s because I want to be sure you have time to see this post with the exciting news!)

Tomorrow/today (Saturday) I will be spending the day at our local/regional DS conference.  The DSAGSL puts this on each year.  I’ve never gone, for a variety of reasons.  But this year, thanks to my buddy Adrienne, I ended up on the planning committee along with Julie. Both of us first-timers, and kind of representing the “moms of younger kids” set.  I also was asked to be part of a workshop with a parent panel on the process of doing the first IEP, transitioning from Early Intervention to the school system.  So tomorrow will be a busy day, one that I am expecting to be exhausting in a few ways, but I hope that it will go well for those who come.  I really hope more are in attendance than what it sounds like there will be.  Julie is picking me up at 7 am. Neither of us like to be up and presentable at that hour.  I believe some caffeine will be involved.

Then on Tuesday morning, Braska and I—more Braska than me—will be “the entertainment” (or the lab rat) for a demonstration by Lori Overland, all the way from Connecticut, at a seminar for therapists here.  Braska will be exhibiting her trouble moving food around in her mouth appropriately and her struggle with liquids remaining in the mouth when she tries to take a drink.  I’m really looking forward to this because Lori is a very well regarded expert on oral-motor issues and feeding, and we get an evaluation and recommendations from her for Braska as a “Thank You” for volunteering.  (Worth like $600!)  I’m all for any expert help with feeding!! And I love that we can be a part of helping people learn about issues that a tiny part of an already small population deal with daily. It was really neat how the kiddos who were originally scheduled were unable to attend and we jumped in to fill a need at the last second…just setting this up today!  Can’t wait to see how it goes.  I just hope Braska cooperates with what they need.  I do have to give a bit of case history to the group, so that will make me nervous, but I’ll make it.  It’s been a while since I’ve had to speak to a group of healthcare professionals, but I think I can remember how.

So it’s going to be a busy weekend around here—I already had an event tonight that I helped with at church, conference tomorrow, Father-in-law’s birthday on Sunday, couple appointments on Monday, and oral-motor seminar on Tuesday—I think I’ll have quite a bit of new and helpful information by the time I get to sit down, breathe, and process it all.  I’ll be sure to share.

Finding a groove

**FYI--There is a picture link to Kinlee's blog in the left margin below Braska's picture link. For those of you who wanted a direct connection...there ya go!**

I'm really not keeping up with this blogging stuff like I'd hoped, but hey...what else is new!? Me? Learning something different than I had planned? No way! I know there are a particular few of you who especially enjoy these epiphanies of mine....so go right ahead. The girls are both in their beds sleeping right now, I just got out of the shower, and I've got about 40 minutes to say hello to blogworld and pick up the living room before the PT gets here.

How are we? That is the most popular question. Depending on it's context, there are several answers...

Physically--We are all well. I'm feeling pretty good, much better than I have for months since all that pregnancy aching is gone. The girls have been healthy. M is finally feeling better after having a couple rounds of frustrating symptoms. My net gain for the pregnancy was 8 pounds, and I've lost 22 or so as of the 3-week mark, so I can't complain. Now just to get my appetite in order... I've been famished lately! Breastfeeding is not a topic I'm one to discuss, usually, but it's going well and I'm even storing up a supply in the freezer for later, so that's encouraging. I did learn a valuable lesson about what I eat affecting Kinlee... poor kid.

Mentally--I'm good! Red Raspberry Leaves capsules ROCK! For being such a skeptic about herbal remedies and such, I'm sure a believer in this particular one. If you've got hormone-related symptoms, either with PCOS, pregnancy (morning sickness!!), PMS, postpartum, or whatever, try these. They can't hurt you (according to physician and pharmacist that I consulted) and in my case, and several others that I've now come to hear from, they have been amazing! I've not had any panic since the day I started them, and after the following day, I've not had much of the anxious stuff at all. That's really really really great in my book! The dose on the bottle is 2 capsules per day, but I started with 3 twice a day when I was at my worst, then I've dropped down to 2 twice a day right now, soon to drop to the maintenance 2 per day. Again, this was checked out with the pros. (Now, having worked in medicine for many years, I have to add the disclaimer that I'm not making any guarantees and I'm not a doctor... but if your issues are hormonally driven...I'd say give it a try!)

Maternally--I'm slowly figuring out how to be the mom to two girls, how to have time to be a wife, and how to sleep in small nuggets of time. In all honesty, I think we have been way blessed and fortunate. Kinlee is SO good, and she is much like her sister in ways that many swore wasn't possible. She's very easygoing, rarely cries unless she's hungry, and then it's such a quiet and short-lived cry. She sleeps well in her crib ,and at night she's taken to a 4 hour schedule for the most part, and I'm loving that. Both the girls travel well when we need to go out. Kinlee is happy to have a bottle or the "real thing" either one and does great with both, so what's not to like about that?!? I am sure there will be days when I crumble and want to run away, but thankfully, the last week or so has been quite manageable.

**Ok, both girls just woke up at the same time, so I'll have to adjust... time to wrap up**

Overall, we're just finding our way to figuring out how to be a happy family of four. So far, so good. Again, thanks so much to all of you who have sent cards and gifts and goodies of all kinds. We SO appreciate you all, and one day I might get caught up on my thank-you cards!!

Let's try this again

No nap was had by me today, so now it's time to get this kid fed and try to get a peaceful night of sleep. She's had a good day since this morning's unfortunate start. I think it's teething, it seems as we've moved through the day. We'll give her some pain meds with this last feeding and hope for rest. She did have one good nap, but I had too much work to get done to take advantage of it. Never fails...

If she gets up tonight, Daddy's on duty. She could kick him and jump on him all night and he'd still sleep.

31 for 21: Off to a great start

Braska was up at 3am in the oh-so-frustrating way she does on rare occasions, sitting up and crying in her crib. After a few tries of rocking til she was asleep and then putting her back in bed, only for her to pop up right away saying "up! up!", she went back to bed with me. As I've mentioned before, I'm not at ALL a fan of kids sleeping in the parents' bed. But when the two options are for me to sit and rock her while she sleeps or to lie down and at least rest while she sleeps, I go for the horizontal position.

She wasn't snoring, so that was an improvement over the congestion issues of a few weeks ago, but I still can't sleep at all when she's right there. I hear every sound, feel every quiver or kick, and it means no sleep for as long as she's there. I managed to get comfortable for a while, but it was short lived as I was on about 10 inches at the edge of our lovely king-sized bed. In my state of aches and pains, with Pepino constantly telling me that she is not happy with my position, this was not a most pleasant few hours, to say the least. But we made it until about 7:20am when M got up for work. Of course, Miss Slept Well While Mommy Didn't was happy, giggling, and ready to play, while I was a tad on the grouchy side.

We got up about 7:45am when her pleas to "get up" were finally heeded, and we started the day. Now it's 9:30 am, and I've changed her twice for massive puking episodes (we call them full-feed, because it's soon after her feeding and it sure looks like the whole 6 oz.), once for excessive diaper mess, and changed me once for her wetting on me while I was trying to whisk her to the tub. There are 6 wet spots on the carpet from puke/spit-up and the carpet cleaner that was added to try to help. We have two therapies scheduled today, ST this morning, and PT this afternoon. Napping is tricky on Thursdays with that schedule, so I've cancelled them for today due to her iffy situation and my lack of sleep and impatience with generally everything.

I'm sure it's just a fluke. She's not really acting sick. I think she might be working on another tooth or two. Whatever it is, it's not the way I like to start a day.

To end on a good note....it's so nice and cool outside, that's nice.

Darn, she just melted into a crying puddle again. For a girl who doesn't cry more than a couple times a month, normally, this is disturbing..... Happy Thursday.