Wednesday, April 28, 2010

Photo funnies


We got a picture in the mail yesterday and, boy, did I get a good laugh.  

Alright, so our church scheduled photo sessions for a new picture directory. I totally dropped the ball, so we were left with the 8:50 PM time slot. Yep. And the boys go to bed (religiously) at 8 PM. You can see where this is going. 

Andrew had a board meeting that same night. So I was flying solo at home. Bathe boys. Iron shirts. Dress boys. Feed boys. Get self dressed and looking presentable. Gather toys, pacifiers, sippy cups...and whatever else I can think of to make this go as smoothly as possible.  

We get to the church and, sure enough, they're running behind. Finally at 9:30 PM we hear, "Lundgren family".  At last!

Like a good mommy of a special needs child, I think ahead and bring one of Luke's favorite musical toys, hoping that if the photographer uses that, Luke will at least look sorta, kinda in the direction of the camera. We got all settled into position. Both boys are fussy.  Bright lights, loud photographer, lot of commotion = bad combination for a visually impaired child. 

As the poor photographer is up there waving his arms like a chicken and flinging around his stuffed flamingo (or whatever it was), I'm trying my best to explain to him that Luke can't see him and, if he would please use the musical toy, maybe things would go better.  But alas, he's up there screaming "Luke. LUUUUUKE!!"  Reminded me of the stupid (sorry) Americans that would come visit us in Italy and would just shout louder in English to the waiter what they wanted to eat. If you just speak slower and louder, magically your words will translate into Italian and they'll understand you perfectly. *wink*

Then, he was all proud of himself and said, "Oh, I'll know what I'll use. Watch this..all kids love this" And he gets out this bottle of bubbles and starts blowing them around.   ?   "How else can I say this?", I'm thinking to myself. Secretly, I wanted to scream..."If he can't see your bright neon stuffed animal, what makes you think he's going to see bubbles floating around??"

We make it through.  (translate: the photographer finally realized we were a lost cause) and head out. The boys were more than ready to leave. So, I leave and Andrew sticks around to look at the results and select the directory picture.  He comes chuckling towards the van and I know what that means. The pictures are terrible and he had to just go with whatever. :))

Quite an experience. We are clearly NOT studio picture kind of family. We wouldn't be anyway.....we don't have a single one. Well, except this lovely free one that just came in the mail. But especially now that we have twins....one of whom is totally unimpressed with the picture-taking process!


When I opened the package yesterday, I laughed out loud for a good long while. Andrew and I are saying, "Keep smiling. Keep smiling." Caleb is saying, "Uhm, I'm supposed to be in bed right now" and little Luke appears to be checking his watch and yawning as if to say, "Oh brother!  Are we done yet?!!"


I love my family!


Tuesday, April 27, 2010

Mothering a Child With Special Needs

It occurred to me today why I haven't tackled that master's degree yet....

And,  that I could almost qualify for a degree in..oh...let's see.. so many things.  Premature birth, pediatric neurology,  optometry, gastroenterology, Ketogenic Diet, pediatric physical,  occupational and speech therapy, developmental specialist.....

Admittedly, on most days while the boys nap, I do regular 'ol stay at home mom things. Laundry. Load dishwasher. Shower, if I'm lucky. Clean the high chairs. Clean UNDER the high chairs.  Facebook. Unload dishwasher. ...you know what I mean.

Today, instead, was spent educating myself on visual impairment and learning about resources available for Luke here in town. I am tremendously blessed that the "classroom" is my very own living room and these dear educator souls come to me, instead of me loading up two babies and going to them.

Missouri School of Blind sends someone out twice a month for an hour session. I'm learning all kinds of things. From the complete anatomy of the eye, to various diseases of the eye, to brain function, to levels of visual impairment. For the record, you cannot imagine what is happening in your brain right now just as you are reading the words on your computer screen. It is seriously amazing the complexities of the human brain and how much has to go "just right" for all of us to be able to see and interpret images. Wow!

While all this is valuable information, I've been longing to find something, someone to help Luke in regards to vision therapy. There just simply isn't a lot around here...surprisingly enough. Not that Springfield is any kind of huge metropolis but we do have better than descent medical facilities and you'd think vision therapy wouldn't be hard to come by. (Once a child turns 3, they qualify for public education which, of course, would provide for services related to visual impairment. But, before the age of 3...not too much available)

So, I was downright elated to find out through one of my fellow special-mommy friends, whose son is also visually impaired that Drury University is starting a Center for the Visually-Impaired!!!
Today, someone from the university came for a home visit to find out more about Luke's needs and to share with me all that is going to be available to him through this new center. Awesome!!  Luke will benefit so much from this. Yes, it only adds to his very full weekly therapy schedule, but that's ok.  :))
I was very impressed with the gal that came out today. It sounds like they've really got their heads together and are striving for excellence as they meet the needs of the visually impaired in this area. How exciting!


The boys were great and napped during both of my "classes" today.  Such good boys. :)   So, the master's degree will wait. For now, mommy-hood is keeping plenty busy learning all kinds of things. And I wouldn't have it any other way.



Monday, April 19, 2010

Day 50

Wanted to get back here to fill in some details.

We're still soaking in the warm, giddy feelings that those words "It's normal" evoked in us two Fridays ago. See previous post.  God is so good and, if I didn't say it before....I'll say it now.  We confident this is nothing short of a miracle.  We see God's hand at every turn.  Giving us wisdom to choose the Ketogenic Diet.  Even leading us TO the diet option (via Google search...hey, God can direct however He needs to!), allowing Luke to respond as well as he did, Luke's brain experiencing a "phenomenal" recovery...at least as far as seizures are concerned.  God be praised!!!



So today is Day 50 of seizure freedom.

Luke's doctors decided to wean Luke off the diet since he experienced such great results. It's a slow wean...decreasing the fat intake ever so slightly every 10 days.  The one side effect that Luke suffered from on the diet was poor growth. He grew taller, but lost 3 lbs, which is a lot in baby world.  So, I think that's one of the reasons that they are wanting to wean him this quickly. (Side note: If you're reading this and considering putting your child on the Ketogenic Diet, please know that Luke's weight loss is NOT typical. Luke had a large section of his intestines removed when he was a month old. His weight loss is probably more related to malabsorption issues than anything else. So, don't be alarmed or let that hold you back from trying this treatment.)


What's going on now then...other than weaning?   Well, basically the same. Therapy, therapy, therapy.  As the doctors said, the epilepsy piece of Luke's puzzle is solved for the moment. But there are many other pieces to consider. Most significantly, is the brain bleed and respiratory distress he suffered at birth.  The boys were born on Sept. 26th and on Sept. 29th, we found out his brain had bled.....a lot.  (There are specific reasons why the bleed occurred....long story for another time) They need to look at the MRI again, but from what they can tell the bleed was near the vision center of his brain and also near the part of the brain that controls motor development.  Makes perfect sense since Luke is visually impaired and very weak in his gross motor skills.

What is the best thing to do?  Of course, keep praying for miracles.  And then, therapy!!!
Children with brain bleeds can experience very different results. Some are disabled for life.....constrained to a wheel chair, cognitively impaired, and unable to do much at all independently. Others go on to walk and run and attend university and lead fairly normal lives.  The hard part:  Only TIME will tell what side of spectrum Luke will be on.  There is SO much even the experts don't know about the brain. But they do know that therapy is crucial....that the brain can "re-wire" itself...that the parts that are healthy can take over for the parts that are damaged.  So, that's we're doing. Working very, very hard to get him all the possible therapy, equipment and resources he can possibly get.

The kind of seizures Luke was having were of the "horrible, awful, catastrophic" variety. They literally halted all development from Sept. '09 to Feb. '10.   That's why we are SO thankful they stopped!!!  In this way we are encouraged....that at least the "electrical storm" has subsided and maybe Luke's brain can start making healthy connections again.

I feel like I should say...please ask any questions that you have. Whether you're a long time friend or just "window shopping" on the web and happened upon this site.  We will answer any questions you have and are not offended by any of it.  So, please ask away and don't ever worry about saying the wrong thing. :-)   Had someone ask me at church a few weeks ago, "So, is Luke gonna be... like.. strapped to a wheel chair for life?"  Uhm...  ok, admittedly, not the most tactful comment I've ever heard!!  But, I was totally fine with it and it helped me realize that in their own way they were trying to understand my son and I appreciate that....a lot.  (By the way, I just smiled and said, "Well....maybe.  Then again...maybe not. We just have to wait and see.")   Luke's taught us, oh my goodness....so many things.  Among them....being patient, learning to wait, and being ok with unanswered questions. :) We've asked them all...the questions, I mean. Many times.  Does he have cerebral palsy?  Do you think he will walk? Can you tell how much he can see?  etc, etc. ETC.  But, alas, we are always told, "We just have to wait and see."   Luke is such a joy. We've learned to do therapy, PRAY, work hard, research, research, research.....do more therapy, PRAY again....but in my midst of all that, never to stop simply ENJOYING Luke...for who he is, for who God made him to be.   He is, like all of us, God's creation and we celebrate that!!




We sure appreciate all of your prayers!!

Friday, April 9, 2010

Normal?

By now, most of you I'm guessing have heard our wonderful news.  How do you prepare yourself for the words, "Your son's EEG is phenomenal.  It looks really great. It's normal."  Normal? What can I say, after being the mom of a special needs child for 18 months now, "normal" is hardly a word I recognize!  :-) 
I'm exageratiing just  a bit. But, ya know, Luke....well, things haven't been exactly normal for him.

So, honestly sitting here in my living room just 36 hours ago, I was doing my little "self-talk" pep talk for our trip to St. Louis.  Saying basically, in so many words "Well, it won't be a normal EEG. I mean he's only been on the diet 4 months. The studies show the EEG usually doesn't normallize until after 6 months. Plus, he  had a severe brain bleed....they already told you his EEG may NEVER be normal...ever, even if the seizures do go away. But it surely has to at least be improved. I mean he is learning new things and these huge clusters of seizures have gone away..."  Anyway...on and on I went, just trying to prepare myself for...well, I don't really even know, but certainly not what we ended up hearing today!!!

Luke's been seizure free for 40 days now.  Last time he had an EEG though, the docs in St. Louis were explaining to us that at times, Luke was seizing, but there was no outward demonstration of that. They had him hooked up to the machine and a video camera on him at the same time. So when the EEG showed seizure activity, they would look to see what Luke was doing right at that moment....and, well...nothing much...just laying there.   This left me feeling very apprehensive, wondering if he was actually having seizures these past 40 days and we just weren't seeing the evidence. 


THANK GOD, that's not the case!!  I will write another post explaining some more of the details, but for tonight (and mainly cause I'm physically and emotinally exhausted after such an exhilirating day) suffice it to say, there is NO SEIZURE ACTIVITY going on....no potential seizure activity going on.  It is ....normal.... and perfect and ...."phenomenal".  Luke's had a dozen or more EEGs in his short life (how sad that I've lost count!) and this is the first time it has been normal.

 All the way home from St. Louis (ok, minus the 20 minute power nap) I kept thinking about the verse in Ephesians that says that God is able to do more....abundantly more. The New Living Translation says, 

"He is able to accomplish infinitely more than we would ever dare to ask for or hope." 

 Wow.  Isn't that the truth!?  And to think I would have settled for just  an "improved" EEG.  God had more in mind than I even dared to hope for!

~Kristi



Tuesday, April 6, 2010

Are you talking to me?

Well, Spring is HERE!!!  The sun is shining, the trees are blooming and I've spent the last two weeks trying to breathe.....literally...crazy allergies.  It's far worse this year than I ever remember. The boys also came down with a Spring cold, so between wiping noses, sleepless nights and lots and lots of sneezing, time's been slipping away and I haven't been able to write any new entries.

I have a a list of about 10 things that I really, really need to get done today and since the boys are napping, I should be tackling that list.


But I just wanted to write a a quick entry about Caleb and his ever-expanding vocabulary. He never stops talking!!! All day long!    Parents as Teachers came last week and I was supposed to make a list of how many words he knows now.  I was only allowed to count words that he actually uses without direction....or without us saying, "Caleb say ____" and him just repeating it. I asked the PAT gal how many words he should know by now and she said around 8...maybe 10.  So, I started to write down his words and easily got to 20!!!  Here's the list:

Mama
Dada
bottle
eat
please
ouch
no
eyes
 ball
balloon
Bible
shoes
bye-bye
night-night
baby
teeth
mouth
yummy
Hi
Yay!
hot
Go, Dog, Go
keys



So proud of our little man!!  The Parents As Teachers gal was thrilled. :) We got to talking about the boys and how they came 11.5 weeks early and all the complications that were involved.  It was another opportunity to share about the miracle of life and all that God has done for Luke and Caleb.  We talk a whole lot about all of the miracles in Luke's little body. But, equally amazing is how far Caleb has come.....starting out as a 2 lb 11 oz baby....suffering from Twin-to-twin transfusion.  But, today you wouldn't know his fragile beginning.  I wanted to cry as the PAT gal said he's not just caught up, he's ahead of where he should be!!   THANK GOD!!


Here are some other things he can do


*  Point to his nose, eyes, ears, teeth, hair, belly, and toes.

* Makes these animal sounds: Bark, meow, moo, baaa(sheep), pig snort, quack.

*Follow these simple commands: Take it to the trash, Go get your blanket, Go play with your toys, Go find your book.   That's off the top my head....there are many more.


It's so exciting to watch him learn new things every single day. He's like a sponge, soaking everything in.


He was weighed and measured yesterday:  25 1/2 pounds, and almost 33 inches tall.  He's growing up so fast.


Really need to get some video uploaded.  I'll try to work on that!