Thursday, April 28, 2011

An eye plan

(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.

Wednesday, April 27, 2011

Easter chicks

We had a very nice Easter. Good visit with family and fun for the girls.  Braska will be sharing more details about the day sometime tomorrow… if you’re into the back story.

Just a couple pics that sum up the day…

My girls, who will NOT look at the camera when asked. Of course. But this is a great shot of the faces I get many times a day. “Come on, Mom.  We are SO over this camera action.”

And my sis, the host for our Easter festivities. Gotta love that straight-from-Mexico tan.  Darn her little jet-setting self.  For real though, we always have a blast hanging out at her house… cooking and eating and talking about all the latest stuff. Good times.

Tuesday, April 26, 2011

Stereo reception via foil

Edited to add: No, I'm not contacting the beings from out there somewhere. Just getting a little hair spruce-up. Ya know, sprucin' for summer.

Sunday, April 24, 2011

Easter afternoon naps

We had a nice morning, church with family, then down here to my sister's house for lunch and egg hunting.  The girls have been good and seem to be enjoying their first actively-easterish Easter.  More pics soon on Braska's blog...

For now, the girls are napping in their rooms, as they claim the extra rooms at Auntie's house.  It is time to just relax...

Saturday, April 23, 2011

It can happen. And it did.

If you’re a local around StL, you’ve probably been watching the coverage all day. If you’re not around here, you might have heard a mention here or there.

The St. Louis metro area was beaten pretty badly by a very persistent tornado. There are still official reports to be made, but it appears to be one tornado, bolstered by some of the craziest and roughest storms full of hail the size of softballs and inches upon inches of rain.

The airport, Lambert-St. Louis International, was hit and is closed. That’s new. And strange. But more upsetting are the dozens of houses all the way through the area, in a line West to East, damaged severely. Many, people are displaced from their homes today.

People in the city always seem to think that these storms don’t happen in the suburban and urban areas. It’s always in the rural areas. It’s always somewhere just outside of our area. It can’t happen IN the metro.

But it did. Over and over and over. (Link to many photos.)

We’re ok. No damage to us or our house. And we are very grateful. We spent a good while in the basement last night, but our property was not affected. Unless you count the lake of standing water in our backyard…and the water leaking into our basement through the wall on the back of the house. But that’s nothing compared to hundreds of families in the area.

Thankfully, and miraculously, no one has been reported with any major injuries. Amazing.

I watched the coverage last night for a while, and when I woke early this morning, I turned it back on. A few minutes into the news reports and helicopter footage, they go to another area of the destruction and show several houses that are damaged along with a larger building that looked very bad. As the helicopter zoomed in a bit, it was clear that the bigger building was a church. The trusses over the auditorium were still standing, but there was nothing attached to them. The pews were all visible, the stage and the baptistry.

And then I stopped and hit the rewind button on my remote. The stage and the baptistry. I know them. Well. Then I hear the announcer say where they are. Near Washington-Elizabeth. Oh my goodness. That’s my church. Not where I currently attend, but that’s where I went for some of my college time in the North County area, and I also went there while I lived in the area again a few years after graduation. It’s about 10 miles from where we live now.

I just stared. The stage is very unique, it was clearly Ferguson Christian Church. The helicopter camera zoomed out again, and I recognized the shape of the building and the location near the corner. I couldn’t believe it.



I used to lead worship there. I played the piano in there when I was early and needed to just play a bit. I stood on that stage many times. It was my home church for a few years. It was a place I belonged for that period of my life. I had great friends there, and I still know several who attend there. The preaching minister is married to one of my good friends from college. The chairman of the elders and his family were very close when I was there before. I housesat for them, and their kids were my friends. The children’s minister and her husband went to college with me. Her father was one of my professors, and he’s an elder there, too. All those people were in the building when this happened. In this auditorium. Until just 2 tiny minutes before this happened.

And now it’s just walls. The classroom part of the building is less damaged, judging from the aerial view, but the auditorium is just walls. It is very surreal.

There were people in that auditorium just moments before the tornado hit. Thanks to a text message notifying of the pending twister that had done damage just west of them, they were able to get everyone downstairs and safe.

Amazing. What a blessing. And yes, even in the midst of such sad news, I know the people there are so thankful that no one was hurt and they are feeling blessed. They know that their church is not that building. They know the Lord and his people will provide what they need. But of course, it’s so sad to see the building destroyed. (Video clip here.)

Please remember them in your prayers, as well as all the many others affected by these storms last night. It’s going to be a very different Resurrection Sunday at FCC this year.

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.

Friday, April 15, 2011

A long week, short weekend

Just because it was a long week doesn't mean it was a bad one. But with an all day training tomorrow for volunteers in the new parent program of the DSAGSL, it is going to be a short weekend. And that makes me a little sad. I would love to have a day to catch up on the house and a day to take the girls out for errands and playgrounds.  We will just fit it all in. Or not. Maybe we will just enjoy the down time we DO have and I will not dwell on what I don't get done.

Easier said than done. But I will sure try.

Make it a great one.

Wednesday, April 13, 2011


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!

Tuesday, April 12, 2011


Two responders working on one child=15 compressions and 2 rescue breaths

One responder working on one adult=30 compressions and 2 rescue breaths

Infant choking=support the head, brace against a thigh, head below the chest, 5 back blows, flip and 5 chest thrusts

Upper right and lower left for AED patches.

V-tach, V-fib

Infant unresponsive, two responders=initial assessment, rescue breaths, brachial pulse.

“Defibrillator is analyzing, everyone stand clear!!!”

Yep, my mind is swimming.  But I passed night one of CPR/AED training. It’s coming back to me, even though it’s been about 3 years since my certification expired. Tomorrow night we go through O2 and more testing.  What a long day, but at least I survived, right?

Oh yeah, and I’m in a class of 9, the other 8 of which are teen lifeguards.  You can imagine how old I feel…

Monday, April 11, 2011

Hand-me-down communication

ok. first time posting from my new-to-me Droid. I do love those who are a few steps ahead of me in technology and share generously whats left behind.

Today was long but good overall. I worked this morning and this afternoon and then fit in a trip to the hair salon for my baby sis and dinner with 2 sisters, my mom and KiKi. It was nice. And that is nice.

We hit Verizon on the way home and made the phone swiitch. Got home in time to get my girls to bed and relax a sec before doing about 90 mins of online training for work.

Tomorrow I work in the morning, finish a project in the p.m. and go to the first of two nights of CPR training...4.5 hrs each night. I am going to be one tired puppy.

Through it all I am glad to have this job and glad M is willing to cover with the girls. Have a great week people!

Friday, April 8, 2011

Good work all around

We're two weeks in to being a "two-income" family.

Though that little title is a bit of a misnomer compared to what it generally means. Our two incomes are just to meet what our previous one income provided. My job is designed to provide enough to pay for our increased costs for medical benefits.

We were able to get an individual health insurance plan (HDHP with HSA), including M, KiKi, and Braska. Braska's at the most expensive tier they can give her, but at least they can't deny her, so that worked in our favor. I'm covered on my new work health plan. It is a very very limited plan, but it works fine for what we need right now.

But the jobs themselves are going well. We are SO thankful to have both of them, especially since we're really enjoying learning the new places (mostly me, as far as "learning"...M just fit right in and hit the ground working). I'm currently doing shadowing during the days, so we've made some adjustments to make that happen. KiKi gets to go with me and hang out in "Y school" as she calls it while I'm there. (AKA child watch) At some point soon, I'll be working evenings and weekends, so M will have the girls at home while I'm working.

I'm finding it pretty humbling to start from scratch and learn a new field from the ground up. But the team around me is super patient and really fun. And I'm generally a quick learner, so it'll come. I need to find time to actually sit down and study all the zillions of things the Y does!

M is really liking his new place, especially his supervisor, which is a WONDERFUL thing. He's not really had that situation, which is why he has hopped the last couple years. But we think he's found a spot to settle into and really enjoy while getting to do the things he really does well.

So that's a quick update... now it's time to get shoes on the girls and head to work. Since Braska doesn't have school on Fridays, they'll both get to go to Y school today. The really do love it in there...their "teachers" are always so good with them.

We are really blessed and so grateful! Enjoy this Friday, friends!

Friday, April 1, 2011

Praise for one, hope for others

This morning I logged on just minutes ago to see great news…

YES!  I saw just that word on a post title in my reader and got all squishy inside. I clicked on the post to see that it WAS as I’d hoped!!! I just starting thanking God and praising him right on the spot, as the tears came so quickly it startled me.  I am SO thankful for this outcome!!!  The judge said YES!

You see, Evan’s new mommy and daddy…

(photo from the Hooks family blog.)

…they were given the answer literally thousands were praying for over the last 36 hours.  Many were fasting and dedicating extra time to prayer yesterday.

The judge they were facing is the same judge who just a couple of weeks ago told another family NO.

Remember Kirill?

(photo from the Davis family blog.)

His family went to bring him home. They pleaded their case before this same judge, asking that region to allow the FIRST adoption of a child with Down syndrome.  And in the end, after hours of questioning, she said NO.  It left an entire community in saddened shock.  (Read their story up to this point in this post.)  The judge said he could not be adopted. The basis given was that Kirill was “not socially adaptable” due to his “medical condition” (Down syndrome) and he was better off in an institution than in a home with a family.

Not only did this present a huge disappointment for Kirill’s family, but there were two families right behind them, going to the SAME region for the SAME request before the SAME judge.  Little Evan’s family was the next in line…

And the judge said YES!!

(photo from the Hooks family blog.)

I know many of you were praying along with these families.  PLEASE continue interceding for them, as Kirill’s family is in the midst of an appeal with the Supreme Court in his country.  I am hopeful that the judge, having learned more about what full and happy lives children with Down syndrome can have in a FAMILY, will reverse her decision for Kirill’s family and let him come home SOON! 

So I’ll continue to pray for the children who need families, and for the children whose families are working hard to get to them, and today, I’m praising God for bringing this one precious child to her forever family.

And THAT is the best way to start a Friday!!!