Tuesday, August 23, 2011

Mommy report: BIG news for a little girl

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

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

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

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

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

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

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

BUT… that wasn’t all…

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

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

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

This is HUGE!!

Wednesday, June 8, 2011

Look back and laugh: Going sterile

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

From 9/2009~

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

______________________________________________________

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

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

image

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.”

image

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.

 

 

 

image

 

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.

image

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.

image

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.

 

image

Footnote: 6/8/2011

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

Tuesday, April 19, 2011

Eyes can be scary

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

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

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

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

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

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

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

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

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

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

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

Wednesday, April 13, 2011

multitask-a-blogging

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

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

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

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

Happy Wednesday friends!

Friday, March 25, 2011

A day in the life: Blown button, new job

Done with…

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

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

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

Ever seen a Mic-Key Button with a blown balloon??
OLYMPUS DIGITAL CAMERA

Pleasant huh?

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

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

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

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

Now on to the rest of the day…

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

Friday, March 18, 2011

Stringing letters

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

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

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

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

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

Saturday, February 19, 2011

Kinlee-isms #4 in request form

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

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

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

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