Saturday, May 28, 2011

Distracted by Joplin

If you have NOT heard news of Joplin’s devastation, I’m not sure how you’ve avoided it. It’s been news everywhere, I hear, but of course being here in the state has made it constantly covered and updated in our area.

When news came that they’d had a direct tornado hit on Sunday, I made a few contacts to people we know there or who have loved ones there. Though I’ve never lived in Joplin, we have quite a few connections, and several years ago I spent a good deal of time there.

My sister-in-law is from there, her family still living in the area. My sister went to college there for one year. My father’s employer is headquartered there. My uncle and cousins went to college there. I had friends in college who were from the area.

Yesterday, my parents and my youngest sister went to Joplin to serve. Help. Do something. My sister took some video as they drove through. Even after seeing all the photos and video through media sources, seeing it at eye level, block after block is overwhelming. I can’t imagine experiencing it first hand.

This week, I’ve been following a couple of stories… many of you may have been aware of these as well. They gained quite a bit of exposure via Facebook especially.

Will Norton was driving home from his own graduation from high school when he was literally taken from his father’s arms and swept through the sunroof of his vehicle and away into the chaos of the tornado.

(Photo courtesy of the Norton family.)

They had hoped to find him alive, but just last night news came that he’d been found, and unfortunately that he was not alive.

Skyular Logsdon was a 16-month-old who was with his mother when the tornado struck.

(Photo courtesy of Skyular’s family.)

He was also taken from his mother’s arms by the twister and was missing for days. I kept checking on the status of the search, but Wednesday he was identified in a morgue. His mother is only 18 and still in the hospital for her injuries. Heartbreaking.

Then, the story of a woman who heard of her father’s passing in the tornado and died of a heart attack from the stress of the news.

It’s overwhelming, and I’m a few hours away. I’ve not seen it with my own eyes in person, and I’m really bothered by all the destruction and the hundreds of sad stories. I’ve been praying for the families, the missing, for the strength of those who are working. I’ve been amazed by the outpouring of generosity in both time and gifts for the city’s residents from people near and far.

Then I got an email from my sister yesterday… with this story. Please take the time to read it. It is written by an ER physician who was in St. John’s when it was hit. (These are some stunning pictures of the inside of the hospital.) The way he shares what he saw is amazing. What a powerful essay about his experience.

Cars after the tornado

Main Entrance
(Photos from St. John’s/Mercy Health’s Flickr)

So I get up each morning, go throughout my day, complain about the little annoyances of my life in the moment, and then stop to realize that I better zip my lip. Stop my griping. Get over myself and the whining.

For I have life. I have a home. I have my children. I have my husband. My house is messy, but it’s all here. I can account for where everyone that I care about is at any given time. And I am grateful. I must continue to be grateful. Consciously grateful.

Please continue to remember the people of Joplin, those who are still missing, and those who have been left to pick up the millions of pieces.

Thursday, May 26, 2011

Lesson learned: Ouch


They look yummy. And they are.  But these small little tidbits made for a simple farewell to a coworker cost me a thumb. Or use of it. At least for a while…

Lesson Learned: When using oven mitts to remove hot stoneware from the oven, put them ON. Don’t cheat by trying to just them flat. There are dangerous places for thumbs to sneak past the protection.

And in case you’re interested in learning a super fast and yummy cookie option…
Cake mix cookies, variety style.
1 white cake mix
1/2 cup oil
2 eggs
2 tsp vanilla
1 1/3 cup oats

Mix it all together by hand, then add in whatever you like. So far some of my favorites are to roll little balls in coconut or cinnamon/sugar, add chocolate chips, or leave plain and decorate with icing.  I’m going to try them next with a bit more oats and raisins. Mmmmmm.

I make them small, bake them on a stone ungreased (if well used/”seasoned”), preheat the oven to 375 and bake for 10 minutes. Leave them on the stone for about 5 minutes, then move to wire rack.

Easy. De-lish.

Monday, May 23, 2011

That's H

We are at the eye doctor's office and Braska's doing great. She got a good report,  so I'm pleased. Of course, her favorite part was the TV that kept showing letters.  She just stood there and announced them all to us. Good times.

Wednesday, May 18, 2011

One long day, almost over

I'm exhausted. I am mentally tired.

But I am thankful.

Thankful for access to the best medical care.
Thankful for the freedom to spend time holding my girl.
Thankful that M was able to go with me to the hospital.
Thankful for excellent nurses and doctors who care.
Thankful for our families who helped SO much today.
Thankful for the many, many people who prayed for us today.

Braska is sleeping and we hope she has a good night. There were a few unpleasant moments this evening, but we are all doing ok. I'm so glad we are home and well. The rest will come. And I'll continue to be thankful. God is good. All the time. No matter what. Good times and bad. But I am thankful that today we end on a high note. My girls are safe and sleeping well. We are blessed.

Letter time at the hospital. Love my letter beads!!

Tuesday, May 17, 2011

Eye surgery #1 tomorrow

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.

Wednesday, May 11, 2011

Finally 37

Today’s M’s birthday. He’s 37.  Finally.  The time from October, when I jump ahead in age for a few months, to May, when he catches up seems forever.  He is relentless, let me tell ya. 

This is currently one of my fave pictures… Daddy walking with the girls into church.  Just what daddies should be doing, in my book.  And he does it every week. This ranks high on my list, and I’m thankful.

I’m working tonight, so not much fun going to be had around here for the birthday boy other than Daddy duty all evening.  But Friday evening we’ll do something more fun.

Welcome to 37, young pup.

Monday, May 9, 2011

Q & A: Ginkgo biloba and eye surgery

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 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 our brand of liquid extract. I’ll be honest, we give her a bit more than that equation recommends. At first it was simply because I didn’t understand the different strengths of the various brands, and then it was because she does really well on the dose she takes, so I’m not going to mess with it much. There are a lot of different thoughts among families who use it and developmental pediatricians about how much is really the ideal dose. Many recommend more mg than we use. I have heard many say that it’s more accurate to use a tablet version for milligram purposes, but with the g-tube situation in our house, liquid always works better. The bottom line for me is that it is not something that is dangerous and must be taken to the exact mg amount, so I’m comfortable that we’re within the proper range.

ETA: My friend Tricia and I spent a while last week looking over links and Googling dosing and strengths of different types. We came up with some good info and some residual confusion. But I feel comfortable after reading quite a few things that we're within an acceptable range for Braska.

Just out of curiosity, did you tell her teachers what was likely causing the difference? If so, what was their response? After we had received reactions from teachers, therapists, and other caregivers, I did talk with most of them about it. (I can’t remember which conversations I had with whom back then, very honestly.) But I do believe I let her teachers know that we had started this and that I felt that was helping with her ability to cooperate and pay better attention, participate better in group times at school, etc. I can’t know for sure, of course, which elements were due to GB, but I do know that the days she seems “off” or “out of it” a little bit, as the teachers or therapists might mention when I pick her up, those days are often days that she didn’t get her dose in the morning or even for two days in a row. We try hard not to let that happen, but life interrupts my plans sometimes. I don’t remember anyone have anything negative to say about her taking it. The consensus seems to be that if it is helping her, they are all for it!

The biggest thing holding me back has been the issues I have heard about sedation/blood issues and ginkgo...did you have any concerns about that?
I’m assuming you mean the issue with the blood thinning quality that can be part of ginkgo’s effects. I am not worried about this, specifically. Most everything I can find on this particular element of GB simply states that as long as the GB is stopped 36 to 48 hours before a sedation or procedure, and started at least 24 hours following the procedure, there are no problems. Braska will be having her eye surgery in a couple weeks, and we’ll be stopping her GB a couple days before and restarting it probably 2 days after.

Also, there were some questions asked of me about what our doctors felt about it. Our pediatrician generally has the “if it doesn’t hurt, go ahead” philosophy, and though I don’t think she is necessarily recommending GB to her toddlers, she didn’t have any problem with us doing it. The doctor at the DS Center at StL Children’s said she hadn’t seen enough evidence to really solidify GB’s positive effects in her mind, but that she had known of many families who use it and have reported great improvements.

I’ll just close this part by saying that there are a lot of other supplements and formulas out there that people swear by. That’s ok, but this is the only one I’m currently interested in. I’ve thought a little about Longvida Curcumin lately, read some interesting things about it, but for now, we’ll stick with our current regimen.

Regarding eye surgery--
How did they initially diagnose this? We have been seeing vision specialists, both of the therapeutic and medical varieties, since Braska was just a few months old. She has had the tilt up, with her chin in the air and looking down her nose at things, for about 3 years, I’d say, with some less frequent periods of it even before that. We’ve seen the pediatric ophthalmologist at least every 6 months since we started with them at Braska’s 6-month check in May 2007. The combination of her crossing and her strange head positions have been discussed at almost every visit.

Initially, the crossing was determined to just be a symptom of her farsightedness, as she struggled to focus on closer things and then crossed from the difficulty. This was when glasses were prescribed for her at 12 months old. It did correct the crossing for a while, but when she was about 2 1/2, the crossing was really seeming to come back in the left eye. Even with her glasses, that eye would sometimes drift inward.

As the head posturing got to be more consistent and more annoying, quite honestly (to me, not to her), we brought it up again with the eye team, and they really felt like it was not visual in nature for a while, probably a year. They looked at many possibilities and examined her several times, but everything pointed to her being able to see ok. We had her, in turn, checked out by PT and OT for this, asking her therapists to see if they thought it was “stacking” or a strength issue that caused her to slouch and rest her head on her upper back. After looking at it from several different angles, everyone felt like the source had to be a vision issue.

So this past year I pushed a little harder with the eye center, asking for more research to be done to look at possible reasons for this. The hang up kept coming in that Braska presented differently every time they would check her eyes. One time they would see this, the next time they would see that. We were told that if it were one or the other, it could be repaired, but they didn’t want to aggravate one by working on the other. Etc, etc, etc. It really became frustrating.

After a few diagnostic tests, including a Cardiff acuity test and some limited video recording of her eyes to study the patterns of the nystagmus, it was finally determined that this Manifest Latent Nystagmus was her proper diagnosis, along with the esotropia (turning inward) strabismus. Part of the element of the MLN is that it looks different at times, so it caused them to be “stumped” (their word) for a while in firming up a diagnosis.

If you’re looking at Braska’s symptoms and seeing something familiar at your house, I’d definitely bring up these diagnoses and see if maybe they fit. I’m NOT saying that they will, but these things are rare enough that it might have been a while since the opth has seen a case, I suppose.

…our dr. is doing some research, but I'm thinking I'm sending her some info on this diagnosis as it seems to be very you have any other sources or websites you have found useful? I don’t have very many websites, honestly, to refer you to specifically, but here’s a few I found that refer to the Manifest Latent Nystagmus and the head tilt element. Since we now believe the tilt to the side to be due to the strabismus and the tilt up (chin in the air) to be due to the MLN, there are two separate lines of both diagnosis and treatment for each individually. Our doctor does think that the first surgery may help the second problem as well, but he feels it will not make full correction. So we’ll probably be looking at a second procedure in the early fall.

MedHelp topic
American Optometric Association

Feel free to ask any other questions you might have… it is amazing how much we can learn from each other as we all encounter new challenges.

Sunday, May 8, 2011

5-year Momiversary

It’s been 5 years since I had the first Mother’s Day that was more personal due to my new role as a mother.  And Braska wasn’t going to be born for 6 months.  I don’t remember that Mother’s Day, as it’s lumped in with a period of time that for sanity purposes has been removed from my quick-recovery memory.  I’m sure there was little if any fuss made over the day, but I’m also sure I didn’t miss the significance.

The beauty in looking back sometimes is to see how far we’ve come. This is a common thing for me.  Because we have come so far. SO far.  Our little family of 2, then 3, and now 4 has experienced more life-changing, breath-stealing, patience-testing events than I ever thought possible… but I accept it and am thankful for it, even when some things still creep up and remind me of the hurt.

Because had it not been for the journey, we would not be at our current place. And this place is not so bad. Not bad at all.

To wake up with little faces next to the bed who want to cuddle and play before we all start our day. 


To spend so much time marveling at the silliness and the sheer volume of smiles that fill our home every day.


It is not always pleasantries and giggles, but even in the most trying times of disobedience and 2-year-old drama and the ripples of disability, this is where I’m supposed to be, and I’m doing my best to embrace it and not miss a minute along the way.

And a note to my mom, Happy Mother’s Day… thanks for teaching me to be the mom I am and giving me the genes of determination to always withstand the bumps in the journey.

Tuesday, May 3, 2011

Gotta go with ginkgo

(Biloba, that is. Liquid gold. Brain power.)

If you heard the Beverly Hillbillies theme and rhythm in your head as you were reading that, you’re as twisted as I am. Welcome.

The point of this was supposed to be telling you about a great sale on Ginkgo Biloba at Puritan’s Pride.  So there ya go.  There’s an awesome sale. Buy 1 get 1. Or even better buy 2 get 3.  Yeah. That’s my kinda deal.  Just ordered me a sweet fivesome a couple days ago. Today’s the last day of this current sale!!

But I figure I can’t really just throw out that there’s a sale, that I ordered 5 bottles, and then not tell you why we would stock up like that.  That’s just not fair, now is it.

Back in the fall, I once again looked at the option of ginkgo.  I’ve heard parents talk about it, and I know some adults with no particular disability or diagnosis who love it for it’s help with maintaining a sharp memory.  I found several bloggy friends who use it with their kids, most preschool or early elementary age, and I talked to a few of them in detail.  I also did my own research about what it had to offer, how the different brands were different. (Found that the main two brands I found are, in fact, not different at all. Hence my going with the less expensive route. The route I linked to above.)

Combining that with what I’ve learned about GABA from DS researchers and conference speakers, I decided that we were going to give it a try.

The nonscientific summary is that there’s too much of something in the brain in kids with DS and ginkgo is effective in inhibiting or absorbing that excess.  This allows for better connections in the brain.  (I’ll include some more scientific links at the end.)

For us, it’s been like seeing Braska connect what she knows with the ability to DO it.

I began her on GB and didn’t tell anyone. Not her teachers, her therapists, or even her dad.  The teachers and therapists commented after only a few days that her attention seemed to be better, that she was communicating a bit better, and that she seemed more “on.”

That’s a recurring sentiment around here.  She is just “on,” or “with it,”  or “sharper” when she has GB in her system consistently.

M wasn’t initially as convinced, once I told him about it and what her team had said.  I noticed a difference, too, but I didn’t want it to just be my perspective, since I knew, and the psychological element of *thinking* I was seeing a change was possible.

And then one day he mentioned how “out of it” she was.  She was kind of zoned out.  She wasn’t as responsive, as quickly, anyway.  And I told him she’d been without the GB for about 4 days.  As a trial to see if we saw regression back to the former state. 

And we definitely did.  I was pretty impressed, I admit.

So she’s consistently been on it ever since.  Save for a day here or there that I forget, when the schedule is different in the morning or something. 

Braska’s speech has always been her strength. Still is.  Her articulation is great, and her vocabulary is very good as well.  But until these past several months, her language—the actual usage of all those words—was still lagging behind.  She could identify anything, label like crazy, but she didn’t USE the words in sentences, asking questions, spontaneously.

She is kind of blowing me away lately.  The spontaneous sharing of info.  What did you do today? Where did you put your shirt?  How was school?  Who did you see at Y-school today?  She can actually answer the questions now.

She just randomly comes to share thoughts with me… 

“Mommy? I need some milk.”  I ask her if she wants a drink or wants it in her belly (via g-button).  She’ll tell me whatever her whim is at the moment.  And then she’ll tell me when she’s full. 

“Mommy? Belle Belle go outside?”  When she sees the dog by the backdoor.

“Mommy?” (See a pattern?  Everything starts with a questioning tone to Mommy.) “I wanna watch Welcome to School.” (Signing Time DVD)

When leaving the house or school or anywhere, “Mommy? Please give me your hand.” She stops walking and reaches up til I comply.

Just today, after her napping in the car for a bit after we arrived home from running errands, she came to me in the house and said, “Mommy? I need put on play shoes. Go outside and play, please.”  She knows that we don’t play outside in our “go out nice” shoes, so she came to tell me to change her shoes and why.  Not bad.

It’s most interesting to watch the concepts that she grasps and can now articulate.  Abstract concepts are notoriously difficult for kids with DS to get.  At least, according to the people who study such things and most of the parents I know.  She still struggles with many things, but she has definitely made great strides in some new conceptual areas.

It’s hard to give great examples, I guess.  But those who have seen the before and after all seem to agree.  For Braska, it makes a difference. For Braska, it has brought new comprehension and connection between concept, understanding, and appropriate related action. 

I can’t make any guarantees, and I’m not pretending to do so.  But I can share what’s worked for us, so that you can make a more informed choice should this ever come up on your radar.

A few more links on the subject of Ginkgo Biloba…
Ginkgo FAQ
Ginkgo Info (This is not an endorsement of the Changing Minds Protocol!)
Ginkgo and DS (a parent perspective)

I’d love to hear if you have tried GB, what you thought about it, and/or what brought you to that decision/conclusion.