Friday, June 29, 2007

Front page news!!!

Just a quick note:

Our local paper The Journal and Courier featured a new community center we are member's of...and Owen is on the front page-check him out!

BTW, that is Jacob sitting next to him and we think TJ is the one in the pool;-) I, in my suited splendor-was not chosen as a model for his offense taken;-)

Link above is for front page of 6-29-07 (Hope it works)

Link above is for full story is link for paper in general in case others don't work:-)

Tuesday, June 26, 2007


Philippians 4:4

Rejoice in the Lord always. I will say it again: Rejoice!

Isaiah 29:19

Once more the humble will rejoice in the LORD; the needy will rejoice in the Holy One of Israel.

Wahoo! I am TRULY rejoicing tonight! After a LONG but uneventful Chicago trip, I have WONDERFUL news to share! It took 2 1/2 grueling hours in a small exam room, but after the adjustments were made and all was done, Owen's band finally fits right! It not only fits right (doesn't fall so low on his eyes or tilt around so much), but there's NO RED MARK!!!!

Yes, it's true...the dreaded red mark has lost the battle and Owen's soon to be round head shape will prevail victorious!!!

Can you tell I'm a bit elated about the lack of red mark? He's had the band on for 12 hours and his skin is PERFECT! And he's happy! And I'm happy!

Thanks for your prayers and well wishes...we still have a long road ahead but I am confident that God will continue to bless our efforts and it WILL all be worth it in the end.

On another well related note, please take a moment to sign this petition:

It is to the American Academy of Pediatrics asking them to mandate Physicians to watch head shape early on and be proactive in assessment, prevention and referral (in a nutshell). I am passionate about this especially because I believe MD's today are simply uninformed on the current therapies for cranial reshaping that ARE effective-where as when they were trained, it was more "Don't worry, head shapes vary, assymetry is no big deal, and helmets don't work".

So, early intervention and prevention is key-but due to the "back to sleep" campaign, which has been tremendously successful in decreasing infant mortality due to SIDS, flat and otherwise 'misshapen' heads are increasing and parents are left blaimng themselves, looking for treatment for a highly preventable condition -that is, Plagiocephaly, which Owen has and I believe could've been prevented or less severe with simple repositioning techniques early on when I first mentioned to his pedi about the misshapeness.

Whoa, that was a mouthful. Repositioing him would've been tedious, but not near as tedious, nor expensive as orthotic treatment is without it.

So, please sign the petition-there are already over 6,000 names of concerned parents, grandparents, friends, family, etc on this important petition that I believe can help.

Owen and I thank you in advance! All our efforts now could help millions of baby's and their parents suffer much less heartache due to positional plagiocephaly.

Before (above) -band
tipping fwd and over his right eye:-(
And it's just plain crooked!

After: Above and below
No tipping fwd even when he moves his head and you can see his 2 beautiful baby blues clearly!

Owen says " I could get more in if I wanted to!"

Saturday, June 23, 2007

Much ado about nothing...

Luke 1:42

In a loud voice she exclaimed: "Blessed are you among women, and blessed is the child you will bear!

As I sit here, with the movie "Hitch" playing, at 11:21pm, with Jacob up, still trying to avoid bed-playing as good as he ever has alone... Using his imagination and being "a little boy" with neat voice changes and boy noises... As I sit here, with Tim on the couch next to me, pretending to read his book, while he really is watching Hitch-and let me tell you-he's sucked into it big--time!... As I sit here, smelling Owen's "baby spit-up" bib, and I am liking it and missing him (and he's just in his bed)...As I sit here, and have just finished typing in my Pampered Chef e-letter-did you get yours? (shameless plug, but true)...

As I sit here amongst the spit up smell, kid sounds, TV blaring and hubby breathing heavy...

I am blessed.

I am so VERY blessed.

And I wish for all of you old-milk moments like these often that just make your heart happy!

And since I can't post without a picture, here's my latest crafty band idea: 'an ode to my hubby!

It's not quite done yet as I need some red letter stickers for his name on front as the ones I used are too small. I know- so OCD!
PS Thank you to those of you who leave comments-even those of you I don't know well-it makes my heart happy to know people care enough to spend a moment to reply to the musings of me;-) I often wish I could reply-but I haven't figured out how to reply to your comments (personally)...any tips? Thanks again!

Friday, June 22, 2007

Somber notes...

Psalm 112:7

He will have no fear of bad news; his heart is steadfast, trusting in the LORD.
(Somber tone)
The genetic counselor called this am (finally)...
Tim and I's chromosome studies are back. To my suprise, I carry Owen's strange chromosome deletion. So, in essence, he is missing part of his chromosome, because I am missing it and didn't have it to give it to him...I know we always knew I was a freak but now it's been proven:-)
What does this mean?
Essentially, nothing. Since I'm "normal" (he, he, he-evil cackle) his deletion is too. So, his differences are caused by some other unknown. Back to the drawing board.
(Even more somber tone)
She went on to say that the skeletal survey taken shows signs on his spine of a metabolic disorder but they are still waiting on the test results to see which/what disorder he may have.
So, what does this mean?
For once, honestly, I have NO idea. I was so dumbfounded, I didn't think to ask what "metabolic disorder". His growth hormones are reportedly normal.
On another somber note...
Still haven't got the band back on full-time-and certainly not for sleep hours, which, in my opinion, seem to be the most imprtant time for him to wear it. But we are trying the so-convenient schedule of 2-3 hours on and then as many hours off as necessary to have his reddened area to fade to prevent the skin form breaking down again.
On an even more somber note...
The dieting coontinues....miserably.
No, not so. It's not so bad. It's just depriving. I have done well (for me anyway)...just mourning the eating out and sugary snack era. But, I have lost some weight already, which I know I shouldn't be watching-but I am. Ultimately, it is not about the weight, nor size, but the health effects/benefits from being at a healthy weight. Weight watchers was recommended to me by my Doctor who is giving me 6 months to do the weight loss/cholesterol lowering thing "on my own" before slapping me with pills. I am not on weight watchers yet b/c of funds-it's expensive to do things like that. Plus, I don't know if the meeting thing is for me.
On a really positive note...
We are all doing well. The boys are healthy and enjoying the summer with lots of time outdoors. Lots of bumps and bruises daily with bike crashes, stubbed toes, and even mystery torns and splinters. We all love watching Owen discover new things each day. We have OT added to Owen's PT regimen for his left sided weakness and, this should evaluate why he can't handle clear fluids (we thicken his formula). We did get some bikes, so we are trying to enjoy bike rides as a family. I enjoy it, I'm just SOOO outta shape. The boys are in their home stretch of vacation bible school (VBS). It's Jakes first year and it's so much fun to see his eyes light up when he talks about the activities, snacks, and other kids-he calls "friends"...wouldn't it be nice if we called all the people we met "friends"-aren't kids great? TJ is having a good time trying to get various neighbors to attend with him each evening. I would love to say that it's been a relaxing and enjoyable week, but I have worked or done shows each night, so it's actually been crazy and hectic.
Hope everyone has a wonderful weekend!
Enjoy our "hand drawn portraits" from our Chuck-E-Cheese trip today!

Tuesday, June 19, 2007

So strong, stinky feet, sqeaky clean & super sweet!

Owen impressed me today when I was working in the kitchen...I caught him arching his back and I said "Are you stretching?" and he would repeat the 'arching motion' each time!

So strong!

I found my feet!!! Ok, so actually Owen did! I already know where mine are-but I'm not so sure I can mimic this newfound skill he has. We wondered if he'd be able to do this as it's a developmental skill he should've already been doing and with shorter limbs, it seemed a stretch for him-but here he is! We are so blessed each time he does something new! He has left sided weakness and grip strength issues, so this is quite a feat-pun intended;-)

Stinky Feet!!!

I laid down today when I put Owen down for a nap, but just before, I 'lectured' the boys on helping out more since they have been 2 little piggies since summer break started. An hour later when I came down with Owen, this is what I found. The first shot they didn't know I was watching. The second is when I said "Boys!" and they turned to me. They had plenty of soap and I must say Jacob is the world's best rinser, but moral of the story-you may want to not visit for a meal at our house for a couple days, because I didn't rewash the dishes;-)

Squeaky Clean!!!

On father's day, I dressed Owen in these new duds I got him super cheap at Target (don't you just love Target?). They have a great clearance now and these size newborn shorts actually 'fit'.

The first pic is to show the shirt, the second is to show the cute pose I caught...feel free to leave a comment with your quote that you think he's saying....this could be super fun to see what people come up with.

Mine is "Mom, God knows you are late for church taking these pictures of me!"

PS I had no time to proof, forgive the typos!!!

Friday, June 15, 2007


For we walk by faith, not sight.

2 Corinthians 5:7

So as these pictures show, I can spend thousands of dollars on Owen's noggin contraption but these silly boys can put on dollar store goggles and voila! asymmetry city. Isn't it funny how hard we work to keep our kids healthy, etc but they enjoy looking silly from time to time. Anyway, thanks to Grandma Debbie for their care package, they love all their little trinkets and treats! They have near outworn the goggles already and they aren't even near the water!!!

I had a phone consult with Cranial tech today and Ginny (his orthotist/PT) just said we are going to have to really work with Owen to get this going again. He now has an open sore from his sensitive skin rubbing on things like the fabric of his swing and car seat. I am now going to try neosporin (sp?) and a band aid...go figure. At least he doesn't have much hair;-) We do get to evade our Monday journey to Chicago since he hasn't worn the band all week. Please, PLEASE, pray for his quick healing so we can get it back on again-I truly believe it was working. His response with the pressure spots are atypical but not unheard of. His head shape and fair skin are just 2 strikes against him-but we ARE NOT counting him out-and I WILL GO DOWN SWINGING!!!!

Of other interest-me...I usually don't talk about me unless it's my mood or in relation to parenting-so beware, this may be a bit boring but it's therapeutic (sp?) for me to get it out so here goes...

On the way home from Owen's surgery, I got a call from my personal MD's nurse. She relays how the doctor NEEDS to see me. I had an appt Monday but the Gary Catastrophe hindered things a bit. So, she proceeds to say that some of my labs were I think-oh great, here goes, I'm dying, I have cancer-no, a tumor!

Not so. I have EXTREMELY high cholesterol, high triglycerides, and to put a cherry on top of that medical sundae-high liver enzymes. How high you ask? I could tll you but then... you know the rest of the line. It's too unmentionable to type. I'm no newbie to this, pardon me, crap...I've had "issues" since college. I've always controlled it with diet and exercise. But the Owen/bedrest excuse made me forget my myriad of "fat" issues and I've proceeded to live by the Renay watchers diet. You know, the one where Renay eats and watches the scales climb in number? Stupid, stupid, stupid.

I knew better, now I must suffer. Oh, not just the typical suffering-but this kind.

At work the other night, I was in my fabulous powder blue scrubs in a c-section. The pedi for the case is one I know pretty well and she asks as the case is wrapping up, "DO you have something to tell me that maybe I haven't heard about already?

(Music from psycho with the woman in the shower screaming runs thru my head) I say no, I'm just fat, Owen's only 7 months old. Ugh.

She (and I) wanted to rewind time-what a dumb question to ask. I deserved it though.

Truth is, I weigh more now than I did at delivery (even with water weight from my death-defying pre-eclampsia act)....

So sad. So, so, very sad. Pathetic really.

So, I'm doomed. Let the dieting begin. If you have any tips that work for you (aside from abstaining from a cotton candy/milk chocolate laden regimen...oh and they must be POSITIVE-I know I caused my health issues, I'm not dumb-just stupid.) I'd be happy to accept tips. For official diagnosis my main problem areas are self control, emotional eating, night-time eating, sedentary life style-the most weight I lift is my 12 pound baby;-), and general lack of good nutrition/exercise.

Of note, I do not drink juice, nor sugary soda, however, I drink Diet Pepsi like it's a food group. I also don't care for milk and I LOVE SUGAR!!!! Yum! I also have normal blood sugar and normal blood pressure (2 balls)...I do have genetics (familial high cholesterol and heart disease (strike one) against me.

So, I guess I should go now and continue on with my hunger pang day. Hoorah! Think positive thoughts for me-but only ones that are calorie-free;-) Off to the health food section-double yum:-)

PS I think I may try bike riding for exercise-of course, I have no bike...but if you are local and have dust on yours, maybe we could swing a pchef trade? I also am in need of one of those trailer thingys for the kiddos.

Tuesday, June 12, 2007

Surgery Success and Chicago Catastrophe!

The surgery went really well today. Thank you for all your prayers and well wishes.
Owen was a trooper. He didn't even have a meltdown until just before it was time to go back...pretty good for a baby that eats every 3-4 hours 24/7 (was 6 plus hours fasting with a decent blood sugar).

The best part was when he was beginning his meltdown just prior to surgery time. They decided to give him a little Versed to "relax him". Ohmagosh! He was soooo cute (and drunk looking:-). He could hardly keep his eyes open but he was fighting it so hard! He just kept starring at me and reaching out for my face. I truly wish I had a recorder with me, but the picture above was close;-) The main diff was he kept his mouth open just a little in his much relaxed state. We were so tickled! We being myself and my sister Heather-who loves Owey sooo much!!!

Finally an agonizing hour and a half after they took him away (ok, so-notsomuch....we fell asleep waiting;-) they told us it went well but that his extreme small ear openings and canals made it much more difficult than anticipated. So then we waited for them to bring him back from the recovery room-he was a "horse" not-so-happy camper. Luckily, since I'm such a smart momma (he, he), I had a bottle ready and popped it right in his starvin' lil' mouth. He of course, went right to sleep. He did get tubes and had lots of fluid in both ears-more in the left so his hearing test still showed a little loss but they think it will be ok.

So, we were able to venture home, and get some much needed zzz's (we were up at 4am).

He has been a sleepy beepy this afternoon but as you can see in the photos, he's doin' great already.

Did the Chicago Catastrophe label pique your interest...well, at least you read this far. Here's my drama, drama, drama from yesterday's misery.

We had a noggin' check at 11:30 so we left bright and early at 8:45. Not an hour into the trip we are stopped on I-65 for 20 minutes for no apparent reason in stand still traffic. Once I finally got back and going again, I made my usual pit stop just before getting on 80/94. Bathroom break and sometimes a drink for the boys. This time I also had to splurge on cold medicine as I was miserably snotting and snorting (sorry for the TMI). We were back and cruising and taking the 80/94 exit when panic came over me! Just driving along thru the construction haven (I should save havoc)...and a little unknown light came on my dash board. Hmmmm....what could this mean? I have run-flat tires and have never gotten a flat-could this be a warning light? So I call Tim at work (DH for dear husband for those of you who aren't in the "know" like I wasn't until recently). DH says to just pull over and read the manual.

So, I have 4 kiddos with me- my 3 and my niece who's 8 packed in the Sienna. I'm not pullin' over on the interstate! So I take the first exit and pull into the gas station/Subway. I read the manual and it's says adjust tire air pressure. Oh, whew...I can do that. So, I proceed to find quarters to pay for the air pump and the bread man with his truck is there and I just ask him how you know when it's full. He looked clueless so I wasn't so sure he was the best choice for inquiries. But, he came over to help me and he was trying to fill it as we heard the distressing sound of air escaping the tire. first thought? Why God? My 2nd, what do I do? Then I calmed some and proceeded to find out that run flat tires are supposed to get you up to 100 miles before stopping (I stopped already though,ugh) so you could hypothetically get to a repair center. I was not near a repair center. Where was I?

I was in Gary, IN. Please tell me you know about Gary, IN...

Go to and type in Gary, IN. You will see on the right side of the screen lots of things to find-crime rate pops up first. It is the 5th most dangerous city- IN THE NATION!!!! One website had it listed as murder capitol of THE WORLD!!!

What on Earth? Lord, why am I HERE? I wasn't panicking though. I was quite calm. I knew it was bad when I asked for a phone book and they called security. What gas station has full-time security? For a phone book?

DH was working back home to find out how to proceed while I had AAA trying to help.

To try to tame the long story, 3 hours of waiting in Gary, IN, Tim and a tow truck driver show up. The tow truck driver, says "Ma'am, do you know where you are? You are in Gary, IN-the worst place in the world to break down." Thanks fella, is all I could think.

SO, we load the kiddos in the camry and I get to ride with Mr. personality and get the 10cent tour of the "region". Once, we were at the tire repair center, DH takes Lindsey (our niece) to wait for the Van while I loaded up the boys to head into Chicago for Owey's noggin' check-which most people might've ditched at this point, but I forged ahead, knowing the poor little guys skin was starting to breakdown (like a rug burn-see photo) and he NEEDED to be seen.

They saw us 4 1/2 hours late and made adjustments, etc. Owen can't wear the band again until his head heals-bummer, we all thought he was making a lil progress.

DH was able to head home with Lindz after a simple puncture repair (free of charge-Praise God!).

I was trying to high-tail it home for a ball game for TJ at 7:20pm...he made it, just in time!

It was a crazy and trying day. Can't wait to go back next Monday, not!

FYI, Gary wasn't so bad-at least the Gas station/subway in Gary, wasn't so bad. Many people tried to help (few understood why I don't have a spare) and one lady even offered to go inside and get me a drink. Owen must have been nervous as he made 3 yucks while there and you can imagine how fun it is to cram 4 kiddos, a stroller and my exquisite physique into a stall to change his diaper. Oh, well-at least God had a few good laughs at my expense yesterday as looking back-it was quite comical...thanks for the memories Gary, IN.

Sunday, June 10, 2007

So amazing! Plus, a fun new look and some new features!

I am so amazed to look at the beautiful gifts I've received from the Lord!

Our 3 boys are truly amazing and precious gifts. Watching them grow, play, etc is just the greatest blessing.

Here's a little update on our little Owen:

At his 7 month measurement check, he was 12 pounds, 12 ounces. 23 3/8 inches long and his noggin' was 43 3/8. Back dating him to 5 months, he is finally on the growth chart with his weight! His height isn't there yet but he did get closer to the curve;-) His head is not only on the charts, but went from the 25th percentile to the 60%!!! Now that's one smart baby!!! No seriously, head growth is a serious measurement, not to be taken lightly and with Owen's mild hydrocephalus, Dr. Ho knows about the increase, plus, we've had a recent catscan so the noggin's all good;-) While I know he's quadrupled his birth weight and gained almost 10 inches of length, he's still such a little guy to me. I forget how little day to day until I get those little reminders like at work when I take care of a new baby...just this weekend, a very average size newborn joined the world at 7 pounds 9 ounces. I was doing her footprints when I looked at the print and thought, I wonder how much bigger Owen's feet are than hers? Well, Tim brought the boys in for dinner with me and I saw first hand just how much bigger they "weren't"...they were the same size. I see him everyday and think he really looks perfectly proportionate...which he may be, but this baby looked perfect also at her 7# 9oz and 20 1/2 inch length. Anyway, just an observation to babble about;-) 'bout the new fresh look of the blog? I finally overcame my fear and upgraded it. I added the map at the bottom where you an add your city and even photo if you want (thanks Tonya-you are so fun to copy from;-) Feel free to check out all the features and let me know what you think...I love reading your comments-more comments (so long s they are nice:-) would be great-it lets me know I'm not just typing to I?

I know-I am a blog junkie. I can't help it. But, here's the deal: Tim always says I should read more so, I write this blog and read other blogs. I learn all about people close and afar and how they deal with what God allows in their lives. It's wonderful and I'm thinking about adding the blogs I read to the side bar under a cool feature heading called "Other blogs of interest". If you want to be a blog of interest, let me know!;-) If nothing else, I've learned a lot about the challenges many others face and how wonderfu a life I'm blessed with. It's also enhanced my prayer life and journaling. Consider this verse:

With God's power working in us, God can do much, much more than anything we can ask or imagine. Ephesians 3:20

Isn't that a truly incredible verse? Sometimes I think few of us really know what prayer can do if we'd just ask! I know when we were expecting Owen and everyone was praying fervently for mine and Owen's was a big thing! But, God wants us to bring to Him not just the BIG things, but everything!

Ok, well, it is Sunday and all-but I'll end my pulpit preaching for now;-)

Please remember Owen in your prayers for his Surgery this Tuesday the 12th. I'm trying hard to have faith that all will go well but I have a bit of uneasiness with his small size and frequent eating-6 hours of fasting seems so long for him (and me driving him screaming to Indy!). And then there's the uncertainty of the hearing test, labs, etc. I must remember: With God's power working in me, He can do MUCH, MUCH MORE than anything I can ask or imagine!

I also have his band on him again, but that pesky red spot and bump has returned. I'm tryig to not worry about it...I took it back off for his nap and will reassess when he finally gets up (we are at 3 1/2 hours and counting). We will travel back to Chicago in the am for an official check and adjustment.

Lastly, a huge thank you to Matthew and know why;-) You are such a blessing! I've walked past the thank you card section a bundle of times and have to do what I intended (a nice thank you card). You guys are great!

Tuesday, June 05, 2007

Bands officially off;-(

So, Owen woke up this morning with a mean, ugly, angry RED SPOT...not just any spot either! A Big ole red bump! Authentic swelling and all. Guess what the band people said about it..."oh, that's not supposed to happen".'s not easy being a medical marvel.

Speaking of being a medical marvel. Apparently, there are 2 cases of Owen's type of Chromosome deletion in the literature. So, how's that for being 1 in a couple billion?

Ok, so truth is, this whole gene mapping thing is pretty new so it really just may be that there are only 2 reports because it's so new, but let me boast in our rarity for half a second;-)

Tim and I had our blood drawn today to see if we are the originators of Owen's medical mysteriousness or if we don't have the deletion, then it's considered de novo (new) fancy, huh? The geneticist saw Owen again today and was of course, baffled. Unfortunately, Owen disobeyed and didn't pee on him or anything! They also will do some more tests on Owen to see if there's any endocrine component plus a few other things.

Ok, so back to the band issue. Essentially we are doomed to make a trip up before Monday's scheduled check but the worst part is, he can't even wear the band again until the silly red spot goes away!!! It's been 8 hours and it's still there-ugh.

So, that's the news for now. Check back in a few minutes as there's sure to be something new;-) he, he:-)

Monday, June 04, 2007

Bands official:-)

Just some was a long but pretty good day. Please pray that he would do well and that the red spots would go aaway---if they don't, another 6 hour trip for adjustments asap! UGH! Off to Indy in the am for more genetic stuff-will update more then;-)

Saturday, June 02, 2007

if wishes could come true....

Just a cute picture that Penney's took of Owey at his 6 mos shots. Got 7 month ones today...I truly can't believe he'll be 7 months old tomorrow.

Off to Chicago Monday to get the "band" -dun, dun, dun, DUNNNNN!