Just RK

I noticed recently that I was holding my phone farther away from me in order to see things clearly…. especially when I was looking at documents or spreadsheets on that little screen.  (yes, spreadsheets.) So today I went to have my eyes checked. I thought it had been a little over a year since my last visit. No. It was 4 years ago. And I’m turning 40 two months from tomorrow.  It’s about time, yes indeed. So wouldn’t you know, I only need a little help with my vision, which is good. But when they recommended bifocals it just seemed weird.   Very weird. After chatting with the vision center manager, who is also a DS mom friend, I decided to try the “readers” route first, to see how that went, since I only need them when working very closely. Not even for the computer…  Why not go for the red, right?  The optometrist assures me I’ll lose a couple pairs of readers then I’ll get over the bifocal fear and deal with that as my reality.  We s...

I’m worn out.  But I’m thankful.  For access to great medical care.  For NO months-long waits to get that medical care. For family who helps out in so many ways, hands-on, with gifts, prayers, or time. For friends who check in often, and who send smiles of encouragement. For my girl, who is some kind of miracle that she can have endured so much in her short life and still waltz into the hospital with the charm that is her calling card and win over all her new friends today. For my bed. I love my bed. Always, but especially tonight. Thank you for your thoughts, prayers, well wishes, and love.  We are blessed to receive them all.

Tomorrow we take Braska to Children’s for a trio of procedures.  Maybe.  Might only be a duo.  She’ll be having a modified Kestenbaum procedure, which is a rare eye muscle surgery relating to the specific type of nystagmus that she has.  This is to help correct the tip and tilt elements of her posturing among other things. She will also be having a dental cleaning and x-rays done by the dentist.  She has horrible terrors at the dentist’s office, so while she’s under with the eyes, he’s going to get in there and do a thorough cleaning and get good x-rays. And while they’re at it… the ENT, who will be working next door tomorrow in another OR, will be peeking in to take a look at her ears and probably put her second set of tubes in while he’s there.  I mean if you’re gonna knock a girl out, might as well take care of a few icky things at once, right?? We start the day early, but not as early as we’d expected. She should be heading back to the OR by a...

The call came this afternoon with our surgery time details. Eye muscle surgery, left eye, for strabismus, to indirectly improve the head tilt to the right shoulder. Be at the hospital at 6:45am. Clear liquids after midnight. NPO from 4:30am. No problem. I’m glad to get it out of the way first thing in the morning. I also found out that a friend of Braska’s from church, Caleb, will be at Children’s tomorrow morning for some difficult testing and appointments.  It’s nice to know that we’ll have friends in the building, them praying for us and us for them, while we’re both pulling for our kids to do well. So when you get up in the morning, please be praying that all goes well and without complications.  Updates will be done on Braska’s blog, for the most part.

Since there were a few questions, I’ll put them here and answer them openly in case anyone else was wondering… (Oh, and the sale is even BETTER now… if you’re still wanting to pick up some GB for your house. It’s not just for kids with DS, lots of adults use it for memory and sharpness. I keep thinking I should use it myself. We just recently started M on it, as it is said to help with dizziness/vertigo, which plagues him occasionally. And it seems to have helped. We'll see how it goes as we move forward.) Regarding ginkgo-- My biggest question..how is this pronounced? :) geeng-ko bill-o-buh is how I understand it to be. Other opinions welcome. How much do you give Braska? Braska gets just about 0.3 mL each day of the liquid. The liquid we use is 500 mg per mL. Some of the popular brands are only 80 mg per mL. The dosing instructions in general, as found here , are for 5.5 mg per kg (2.2 lbs). For Braska that would be about 60 mg, which would be just a few drops of ou...

(Backstory here … if needed.) We saw Dr. L on Monday.  He decided that although there IS Manifest-Latent Nystagmus present with Braska , it is not the primary concern that needs to be repaired first. He feels that the strabismus/esotropia (Left eye crossing inwardly) can be corrected first, hopefully making improvements in the head tilt that Braska consistently has.  (That’s the tilt toward her right shoulder.)  The tip up, chin up in the air looking down her nose at everything, is mostly likely still related to the MLN, and we will be looking at a second surgery to correct that, probably in September. So for now, we’re planning on surgery #1 on May 18 at StL Children’s.  We appreciate your prayers for health between now and then, a successful and uncomplicated procedure that day, and a swift recovery with as minimal a level of discomfort as is possible.

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....

Just a quick one… Braska’s not crossing as much with her new lenses. I’m hoping she’s adjusting. She hasn’t been taking them off, either, but she is still not sitting back from her shows as much as she used to. Maybe it’s just habit at this point. We’ll be doing some unscientific testing. But the eye center never called back. That doesn’t make me pleased. I’ll be calling them tomorrow to follow up. I’m pleased she’s doing better, but they don’t know that. And they still need to respond to calls. Simple courtesy. This isn’t like them, so I’ll check in again.

Braska’s got glasses. We’re all aware of this, I think. On 10/11, we went in for a visit and got a new prescription.  I was hopeful that this would help her out, since Dr. S said that it was a pretty significant change. We ordered the new lenses to be put into her most recent frames, and they were ready for us this past Thursday.  We picked them up, and she promptly began taking them off. Braska doesn’t generally take her glasses off unless she bumps them and can’t get them back in a comfy position or if they are really dirty and smeared.  She’s been great since day one in leaving them on.  But not this time.  It was like she couldn’t see and kept taking them off to remedy the problem.  When she is not wearing her glasses, her eyes turn inward quite significantly, though just one at a time.  One of her issues is that her eyes don’t seem to work together as well as they should…partially due to muscular weakness.  We’re used to seeing the c...