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.

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!

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.)

Stringing letters

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

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

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


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

Make an on-line slideshow at www.OneTrueMedia.com

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.

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.

Little feeding helper

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

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


Then she has to find my button under my shirt.


And she knows how to plug it in, too.


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


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

Popping in for a sec

A few things to note…

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