Wednesday, August 31, 2011

Today is the starts in full swing.  Lilah and Garrett both go--to two different schools, at two different times.  Lilah needs a change of clothes, a feeding tube, a case of food, breakfast, lunch, two bibs, two cups, and her signed and returned folder.  Garrett needs his backpack, paperwork, change of clothes, a lunch, two drinks, sunscreen on his scar, his hat, and a spanking to adjust his attitude before we get there (kidding).  I know you all aren't so interested in the minutia of my mental checklist, such as it is, but I'm using you as a sounding board to review:).
I'm a bit keyed up today--up and drinking stout coffee before the chickens.  I haven't been up before the chickens since my littlest hatchling was born.  But, I can't sleep this morning b/c I'm trying to figure out how it's really going to happen.  This is the first morning I've had to haul all three anywhere on a schedule...poor Ada.  I'm sure she'll love being plucked from her nice, warm bed to enter the auditory assault of the Backyardigans blaring and Garrett whining about not going.  Her reward is coming though...both big kids accounted for and out of the house--at the same time--and her momma all to herself!!
Incase there are any fears about what I will do with 4 free hours...I should be going to the grocery, because a mouse could not live here for lack of food.  However, I'm planning on a magazine, a cold diet coke, and the mountain of chores will have to wait until next week.

Tuesday, August 30, 2011

Most little sisters think their brother hung the moon....interested in him to a point of contention.  But, not this one...and it's not for lack of trying on his part.  Garrett would dangle from the rooftop, while dancing and singing her favorite songs--if only it would get her attention.  All he wants is for her to notice what he's doing...acknowledge that he's as cool, as he already knows he is.  Garrett works hard for some connection and for whatever reason, Lilah is much more likely to engage with an adult than children.
Here is a rare glimpse at a shared glad I caught it on film.  It was a YouTube Elmo video:).

Friday, August 26, 2011

I really should read the news more (it was one of my resolutions, after all), because I know if I was wondering about things like the Middle East or healthcare, I'd spend less time stressing about Garrett's lunch.  That's right...I've spent way too much time thinking about what to pack in a not-yet-5-year-old's lunch...for preschool.  I lead a narrow and shallow life--it's now official.  Buuuuut, this year he goes 4 days and, if my new math is right, that's 4 lunches a week.

Either the apple does not fall far from the tree, or I indulge G, like I do his father, when it comes to food.  Hot meat.  Every meal. (For the record, I mostly do not cook breakfast or lunch, but still).  No sandwiches. No pasta.  No cheese.  This is fine at home, but not incredibly convenient for a boxed lunch.  In previous years, his teachers have assumed our family is vegetarian---which makes me laugh just to type, because, at our house--beef and bacon reign.   They thought this because I sent things like hummus, nuts, and nut butters as protein sources for lunch.  All mothers know that when your child likes a healthy food, you beat it like a dead horse until they act like they'd sooner eat rat poison that let hummus pass their lips.  Of course, I did it anyway and now I'm out of easy options.

So, as I was lazing by the pool this summer, with a cold drink and a cabana boy fanning me.....what was I saying??? Oh yeah, my plan.  My plan revolves around a thermos to keep foods hot.  For the record, I tried to send a hot dog in foil one time and it did not pass the test.  Chicken nuggets, bagel bites, quesadillas, I'm thinking.  For the last week, I've taken a two pronged approach:  1) test thermos to see if it indeed would keep a dog hot (btw, thermoses seem very retro to me.  i'm like mrs brady)... and 2) get the little dictator to agree to some food he might be willing to eat from said thermos.

Prong 1 is going poorly.  The first three days, I filled the thermos with hot water to warm it up and then forgot to fill it with food later. Day 4, I put some hot eggs in from breakfast, but forgot to check on it until dinner.  It was cold. (i'm like mrs brady, without alice)  I was demoralized and lost motivation for day 5.  Tomorrow is a new day.

Prong 2 went something like this:
me:  "Garrett, what do you think you'll take in your lunch this year."
g:  "nothing.  i'm not going."
g:  "ribs"
"I'll trade you my sandwich for your.....beef tips?? pork chops?? new york strip??"

Great.  Ribs.  Totally convenient.  I'll get right on that.  Except, I guess I should quit worrying about it because he still maintains that he's not going.  Should be a great year:)

Wednesday, August 24, 2011

Remember how in 5th grade when a boy would tease you and your mom would say "do nothing.  don't react"?  It amazes me that the best choice is often to do nothing--and how hard that is.  We live in a society of instant gratification...we are programed to search for a quick fix.

Lilah's MRI was "normal".  For a spit second we smiled because we are not too accustomed that word....and then we realized that her orthopedic surgeon was looking for an explanation for her abnormality of her spinal cord that could have been causing the curve...something that could be fixed.  But no.  Her curve is the result of weak muscles and neurological impairment--the most severe and the hardest to treat....and progressing at a nauseating rate.  In February her thoracic curvature measured 43 degrees (there are 2 smaller curves that the body has created for balance), last month it was 56.  The bigger she gets, the more mobile she becomes...the more gravity pulls at her spine--a very cruel irony.

As I'd mentioned before, all treatment options are bad in Lilah's case.  A brace is ineffective against this type of scholeosis, she is not strong enough to support a cast, and the surgery is brutal, even for healthy teenagers.

And so, we do nothing.   Her team decided that she was not a good candidate for any intervention given that severe complications were likely.  Sadly, we learned early that there is no 'fixing' what's broken with this precious child's body....but we can make decisions that give her the best possible life.  We've been given a great peace about 'letting her be', as both Paul and I had extreme anxiety over subjecting her to any of the treatments.  Even though her scholeosis is no better, it feels as if we have been relieved of the burden in some ways.  Choosing not to treat takes it off the less thing to worry about ....many fewer doctors appointments to attend.  And goodness knows, that's a blessing.

Lilah and her Uncle Jeff

So the best choice is to wait and watch and let this disease follow it's course...trusting that any other decision would rob Lilah of a quality of life that we work very hard to maintain.  I am thankful today we have choices in her care and such an incredible support system to help us make decisions that no one should have to make.

Tuesday, August 23, 2011

In that first dark winter, when I ran around adjusting monitors, administering countless medicines, and loading up my toddler, my very sick baby, and an oxygen canister for daily doctor appointments--I thought this day would never come.  But, I knew if I could just hang on for 3 years, then this day would come an dI would not be the soul person repsonible for this very challenging little girl.  I would day-dream of the day that she would be somewhere else and someone else's responsibility for at least a few hours.  Terrible, isn't it? Other parents would tell me about how hard it was to send their child to school and I'd laugh inside.  Because I just wanted mine to go.  Just go.  And not like, Oh I think it'll be so good for her....but more it'll be so good for me.

Back then I felt guilty about wanting to do what was best for me--and totally selfish. Today I am totally confident that Lilah going to school is a great thing for her....because it's a great thing for me to get a break.  I know it's  uncouth to say you need a break from your child, but it's the truth.  One of the differences in having a special needs child is that you, as  a parent, are constantly giving  (time, emotions, love, physical care, etc) until you run out of things to give.  And then you give some more.
I have giveniveniveniven and I am worn out.  I need some time to restore my batteries, to feed my soul, to breath fresh air, and enjoy some freedom--so that I can be a better mother for all my kids, but especially Lilah.  I want to love my precious daughter as God intended and I know being the best mom I can be means taking care of myself.  

Lilah seemed to enjoy her first day of school....she pushed her wheelchair right into the building without looking back and looked happy when we picked her up.  We are thankful for teachers and aides that enjoy and delight in our sweet girl.  She's going to have a great year!

Sunday, August 21, 2011

TGIFS.  It's been a long week.  The good news is that it's over and we survived 3 days at Children's.  The last 2 were for attempts 1 and 2 at Lilah's MRI.  The first day we enter via the ER after Garrett slammed his face into a tree in the front yard.

It was a week day and the kids and I were 'play-dating' with some friends.  The babies and adults were in the back yard and the big kids were running back and forth.  Somewhere in one of the 'forths', we heard a blood-curdling scream.  "Please let that NOT be my child" all 3 of the mothers were thinking on the dead sprint around the house.  My stomach sank--I drew the short straw.  Garrett's face was covered in blood and even though I wanted to simultaneously cry and throw up, I scooped him and took him inside to ascertain the's.face.

No amount of wiping, applying pressure, or begging him to calm down helped me to get a clear picture of what was going on beneath the blood.  But, I could spot a giant gash in his lip that I was pretty sure would need stitches.  Just for the record, the pediatrician does not stitch lips in the office--so we headed off to the ER.

A head CT, many applications of numbing cream, some Lortab, a showing of Gnomeo & Juliet, and a 'de-breeding' session later....we were home.  He did not need stitches, but he did make quite the impression on the staff.  Let's just say my boy is not afraid to make a scene.
Much happier....sedatives are good.
You'll be glad to know he is recovering nicely....basking in the glow of sympathy gifts and, if it were possible, even more attention. I learned several things through the ordeal:

1.  If I am ever alone with all 3 and need to head to the ER, I will call 911.  It would be impossible for me to load up all three in a timely manner, restrain the victim in the car, and deal with the crowd in the waiting room.  
2.  Never drop your guard of preparedness.  Must have things somewhat organized at all times should someone else have to take command of my children (i.e., frozen milk, labeled instructions, meds drawn up, etc).  
3.  It's good to have interesting stuff in your purse at all times.....the power of unwrapping 30 bandaids and sticking them all over momma's face is incredibly distracting.
4.  I prefer emergencies that do not involve blood.

Lilah's MRI went well on Friday.  The sedation and extubation were uneventful, thankfully.  We meet with the Orthopedic Surgeon on Tuesday for the results.  Thankyou for your prayers, as always.

Thursday, August 18, 2011

You know how you always think things will slow down??? And they don't??:) This is one of those days/ weeks/ months.  A quick update to ask for your continued prayers for Lilah.  Her MRI did not go as planned today.  We went through the whole rigamarole of fasting, check-in, numbing cream, IV started, blah, blah, blah and the doctor came out 15 minutes later (it was supposed to take over an hour).  Never a good sign.

Basically, Lilah was unable to maintain her airway and her oxygen sats dropped (pretty much like sleep apnea).  So, it was unsafe to keep her sedated and they were unable to do the test.  We go back tomorrow for the real-deal sedation, where they will intubate her.  The good news is that Children's Hospital has remodeled and now we can get a decent cup of coffee.  Coffee and this man--my best friends.

More tomorrow....

Monday, August 15, 2011

I think we are back in the game.  The game of life, that is.  I'm sure it's totally screwed up, but the barometer I use for how well we are coping with 'things' is "are we enjoying life, as a family?". Obviously, we enjoy each other (most of the time), but it is very easy to get bogged down with the tasks of care....with Lilah alone, but a new baby heaps on another set.  Since Ada's birth, we've been treading water...trying not to sink under the jobs of daily living.  But, I think the needle is shifting because, in the last week, we've been swimming twice, to church, and out to eat--as a family! Three cheers for us:).

Clearly, attending church was the most rewarding (because, you know, its all about what I get out of it), partially because it's an act of congress getting there, but also because it literally "fills us up".  Reminds us, encourages us, sustains our family for the days ahead....which is timely, because the days ahead may be trying.

The short version is that Lilah's scholeosis has progressed significantly in the past 6 months (i.e., her curvature has worsened).  "It is impressive", I have learned in the last 3 years, actually means "I am somewhat horrified", in doctor speak.  So, yeah, it's impressive--meaning we are going to come up with a game plan before it starts affecting her lungs and heart.  In her Orthopedic's words, our choices are"basically all bad options".  How comforting.

Three doctor visits, an EKG, an echo, an x-ray, multiple phone calls, and physician and insurance clearance later.....the next step is a complete MRI of Lilah's spine.  They say it's a 3 hour deal and she'll have to be sedated.  The MRI is Thursday and we meet with the doctor again Tuesday to review the options.

Please pray.  I'm not even sure what to ask you to pray for at this point...obviously that she will tolerate the sedation. But past that, I don't even know.  The results will either be bad or bad-er, I think.  I guess whatever it is, I'm hoping that we can just wait.  My 'day at a time' life strategy has morphed into a 'just not today' approach when it comes to dealing with Lilah's medical issues.  For some reason (maybe denial, or procrastination?), I always feel like it's best to put off anything we can.  She's relatively healthy and happy and I don't want to rock the boat.

As hard as it is, I know this is what God has for her life.  It does not mean I understand it or that her suffering does not break my heart, but He has given us a peace that no part of this road is an accident or a mistake.  Pray for wisdom for Paul and I, that as we weigh "bad options", that the best choice for our sweet girl will be clear.  Our desire for Lilah's years to be good far outweighs our instinct for wanting her years to be long.

Saturday, August 13, 2011

The countdown is 'on', people.....5 days until Lilahs first day of school. She'll start at West Hills Elementary on Wednesday. Gulp. You might remember that she went to what we called 'school' last year, but it was really the infant class at our neighborhood preschool..a familiar place Garrett has gone for years. This is big girl school. She'll go 3 days a week from 7:45am-1pm. She will eat breakfast and lunch there. She will get dropped off and picked up from 'the line'...where I will sit in my car and watch her teacher push her inside the giant, mysterious abyss that is elementary school. Gulp Gulp.
We (Lilah and I) went to "meet and greet" yesterday. I was a nervous wreck. I think my anxiety was a combination of wanting them to love her and worry about how it would go.  I know everyone goes through sending their child into the care of relative strangers, but sending a child that is, for all practical purposes, totally helpless, and completely unable to recount their day is an entirely different story. A story that involves me relinquishing much more control than I am used to doing. It requires a whole lot of trust. And it is scary.

I know she'll do fine. And I know they'll love her ( how could they not?). And it will certainly be good for her.

The "meet and greet" went well, but I'm pretty sure Lilah did not get the first impression rose. As we walked in the room, I said "this is Lilah", and looked down at her in the stroller...just as she was pulling her finger, and a giant, nasty boogie, out of her left nostril. They must be used to it though, considering 4 boxes of tissues were part of the 20 item school supply list. :)

Tuesday, August 9, 2011

I hate camping.  Actually, we camped a fair bit growing up and I liked that, but camping with my dad is really an entirely different experience.  One that involves simply showing up...because he has been planning, packing, and preparing for weeks.  I do enjoy the outdoors, but overnight stays at a Westin on the beach are the stuff my daydreams are made of these days.  I might have enjoyed snuggling up to my man in a tent by the fire before kids, but the mental image of camping with small people kills any of the (tiniest) joy I might have had for camping.

Which is why it was so odd that when some close friends of ours took theirs camping together this summer, I was bitten by the green eyed monster--jealous as all-get-out over schleping gear, dodging bugs, and sweating like a beast! I don't even like camping and if asked to go, I would quickly say "no. heck no!".  So, why did I care that the Burch bunch wasn't participating in this iconic summer fun?  I could just see trying to push Lilah in her wheelchair over tree roots in the path, deciding who stays with her while G plays in the creek, stressing out as the whole campground listens to her frustration over choosing the wrong Backyardigans to watch.  We could never go.

And that's what was bothering me, I realized.  Our family cannot go camping. Everyone likes to decide on their own what they want to make their own choices.  And, while I might not choose to go camping, I want the choice.  Maybe it's the old 'want what you can't have' or 'the grass is always greener' stuff--whatever it is, I am jealous of a normal life--family life without such rigid limitations.  I have longed for a summer where I can scoop my kids up and go to a waterpark, or a baseball game, or even out to lunch--any activity where I don't first have to run through a mental checklist (where will she sit?, how will I get her inside?, do I have enough distractions?, will she be in the sun?, will she be too hot?, when does she need to eat again?). 

I would not trade my sweet miracle for a normal life, but I wish I could have both.  And then again, as I have so many times in the last years, I remind myself that this 'normal life' is just my perception in many ways.  That everyone has a weight to bear and limitations to deal's just that we are all prone to think ours are the hardest.  And, it doesn't much matter what I think--I just have to make the best of it.  So, for the rest of the summer...we are forging onward, these little people and I.  We are a team.  A determined to go--to the pool, the mall, the ice cream shop...maybe even the fair.  Just not camping.  At least not yet.:)

Thursday, August 4, 2011

Cousin Love

Ada made the 11th cousin on the Burch side and here they are.....

From Left: Ada, Galia (Robert's oldest, Maggie (David's youngest), Elizabeth (Katherine's), AnnaKate (Liz's), Yossi (Robert's), Daisy (Robert's youngest), Garrett, Lilah, Owen (David's), Tamar (Robert's)

Granny, with the addition of Christopher, honorary Burch cousin

Wednesday, August 3, 2011

swimming lessons

I'm exhausted and broke--all because my 4 year old had swimming lessons for the last two weeks.  You might not think that a 1 hr lesson for 8 days would have such an impact---but, you'd be wrong.  First off, for someone who hasn't taken her children anywhere expect the Chick Fil A drive thru since in months, the act of getting everyone in the car was impressive.  (I won't get into the flow chart that has to be followed to get all 3 ready to get in the car....that's an entirely different post).  It was a 10 minute sunscreen application, a 20 minute drive, an hour lesson, a 20 minute drive home, lunch, shower, etc.  When you add in the whining and crying before and after lessons in the am, and the assault of pleading not to go to lessons tomorrow that began around dinner the night before (every day), it was an all day activity.
 We I chose the Swim Nazi (not her official title) for lessons this year because I was tired of dinking around with $85 lessons at The Y that were the basic equivelant of what G and I have been doing during his bathtime for the last 4 years.  Also, because of little baby and middle baby, I knew that I wouldn't be able to get in the water this summer and teach Garrett myself--not that he'd take my instruction anyway.
The last reason we chose the infamous Swim Nazi is because I had heard from many people that "she taught my child to swim indepenently in 1 week".  Sold.

You know how sometimes when you are listening to people, you only hear bits and pieces....mostly the pieces you want to hear, like "swim independently" and not the bits you don't want to hear, like "will be in counseling till he's 18"??         Right.  Well, that was pretty much the case here.
 Let's just say you don't teach a child to swim quickly by being a softie.

a happy moment.  in tears moments later.

the highlight.

not sure if this was anger or confusion.

Ada loved swim lessons:)
All's well that ends well.  Garrett learned to swim.  Actually, thanks to the effort of aunts, uncles, cousins, and grandparents, he learned to swim earlier in the summer....but now he is more efficient. He learned (in theory) the basics for a few strokes, but I think I learned, when calculating the cost of the Swim Nazi, you should factor in the dollars for a daily bribe treat, lunch, gas to keep the car rolling and baby happy during the hour wait, and, of course.....therapy.  For me and the little swimmer.