Tuesday, May 29, 2007

Rollin', rollin', rollin'....

It finally happened and I'm afraid there ain't no stopping him now. I found him on his belly in his big boy crib after nap time yesterday but thought it a fluke...but I was wrong.

The boys were all playing upstairs and TJ yelled down, Owen keeps rolling over and won't stop.

So, it's official...my big-headed boy can finally roll onto his belly, but that big heavy head makes him roll back to his back just as fast. It's all quite cute and makes my heart heavy. One, because he's growing up (well, all but his belly, he still eats every 2-4 hours, ugh).

Second, we got a call from genetics and they found some abnormalities in one of Owey's chromosomes. It makes me sad...I know God made him perfect, but hearing that something really did get messed up in his wiring is like, well, just sad. I have wanted an answer so badly to why he's small and now I'm wishing I didn't know again. Ok, enough boo-whooing. As waiting seems to be a theme in my life, more tests must be done to give us conclusive answers. I find myself wondering what conclusive is nowadys, anyway!

Come to papa, cute lil pink bear!
I'll get you my pretty, evil cackle;->

Maybe if I just get this leg high enough..

I should've taken those pilates classes for babies!

Ah, a big victory for the little one!

Monday, May 28, 2007

A big Happy Memorial Day!

An Owey first, in his big boy crib now;-) In case you were wondering how Angels sleep, you now have your answer.

Owen in his bumbo seat just wishing he could have a bite of big bub's poptart

The boys had a blissful day outside in the water, with their bikes and more!

Thursday, May 24, 2007

Through casting...i-pass;-)

1 Peter 5:7

CAST all you cares upon Him, for He cares for you! (my emphasis added;-)

Well, lol, Tim came up with this witty verse, which is so true, due to our adventure today-Owen's casting appt. We headed back to Chicago and here's some photos and details of the memorable event. And as for the verse, I need to meditate on it because I really have been going "nutso" with all the insurance run-around (they denied us;-( and issues with the geneticist, ENT docs, etc.

On a positive note, I feel so blessed that Tim came today! He was very supportive and helpful. In fact, you'll see his hands and him don the apron (in case the cast goo was strewn across the room-but it wasn't;-P in the photos with Owey.

Ya know the expression, 'it's a God thing'...today, I believe that happened.

We were discussing on the way up about I-passes, you know-the toll road pass thingy you can get. We decided to try to check into it because of the frequency of our trips, etc. We asked at a toll and she told us we could look into it at an overhead oasis. Then, when we were close by Cranial Tech, Tim saw a Burger King (which he wanted to go to vs the oasis on the way back), so I figured the Oasis was out. But, he still stopped for me to run in and just "see". Anyway, long story short, it takes 2-3 weeks via online or mailed apps, but by the Grace of God, I-pass had a 2 hour set-up at this Oasis only today while I was there!!!! We left with the I-pass in hand and easily saved 20 minutes (and half price tolls) on the way home. It was a small thing but meant so much to me! Tim thinks the pass saves even 30 minutes plus off our drive (in the future) as there are 6 tolls total. Again, a little thing, but saving 50% and the time of stopping thru 6 tolls, will really make those weekly ventures-well-just better!

The Owester did so well today (and so did big brother Jake!). The whole thing only took about 10 minutes and the end product is an Owey head cast for his soon to come "head-sicle". They'll use this mold to make his band and the head-sicle to follow his progress. We got even more good news that because of his age adjustment back to 4 1/2 months, they are expediting his Band processing and we have our fitting June 4th. We may be called in as early as next Thursday if it's in sooner.

Ok, so for the HUGE prayer request! Please pray that when he is fitted, that it fits and that no pressure spots are evident as it would mean an extended stay in Chicago for adjustments, etc. They can't allow the red spots from pressure as it can break down his skin fast and then he couldn't wear the band until his head healed. This isn't usually a problem, but can happen so I am praying we are spared and the band just fits and starts doing it's thing!
Ok, better scoot-here's the pics from today!

Getting TJ off to his 2nd to last day of 1st grade

Jakes being the entertainment during the casting.

You're gonna do "what" to my noggin'?!?!

I have a mom who can find a photo opp in a waiting room!

Big Daddy dons the apron

Seriously, what is she smiling about?

You're putting that over my head and holding my arms down...call CPS!!!

It can't be gone-more milk-more comfort food-please!!!

Seriously, what is HE smiling about?

You've got to be joking me! Will this stuff come off?

Ah, yes-I guess it will.

My Owen head cast. Head sicle coming soon!

Fresh duds for this clean baby. Naptime, here I come!!!

Hope you enjoyed the Photo Recap of my big adventure!

Tuesday, May 22, 2007

Chicago bound...again.

So close!

blue eyes to melt your heart...

Just wanted to quick update that after much thought, we have decided to proceed with Owen's casting appt. He will be casted this Thursday morning and I believe we'll have to head back for the fitting in about 2 weeks. No, insurance hasn't approved it. They in fact, have told me verbally they will deny the request-not suprising as I went "out of network"...convenient that the only company in the country that specializes in plagiocephaly is OUT of network for Arnett HMO.

So, I'm taking on a bunch more hours at the hospital to pay for gas, the band, etc. I know that when all is said and done, I will be able to look Owen in the eyes someday and say, we did everything for you possible and always God provided;-) Please continue to pray as this journey begins, that our weekly trips to Chicago are quick and uneventful-and of course, for safe travels.

Also, that the band treatment would be a huge success and work even more quickly than they anticipate and that somehow (hmmm...maybe because God is soooo good) that HMO will either allow the treatment or accept the appeal. Oh, and that TJ and Jacob deal with all this well-it's going to be a LONG, hard 4 months;-(

Thursday, May 17, 2007

Owen's in a band???

Ok, so not really-at least not the kind of band you may be thinking of-read on to learn more;-)
Disclaimer for the following entry...

Why? To answer curiosity, to help others be informed and potentially prevent this from happening to your or someone you know's child and generally, to tell more about our story.
Ok, with that over, here goes...
We had our BIG trip to Chicago today! Nearly 300 miles and 9 hours later we arrived back home with lots of information. Plus, a nice visit with Amy and Quinn.

Here's the recap: We headed out this morning with trials to start our journey including no car seat for Jacob, and 3 wrong turns. Good thing we left tons earlier than needed. The drive went smoothly from there and I was blessed with 2 sleeping kiddos most the way and didn't have any further problems until I arrived near my destination and passed by the building 3 times before realizing it was "the place". It was weird b/c it was a building that you drive under and can park under, but I couldn't figure out how to get in "the front doors" since there weren't any.

Oh, by the way-this was the appt for Owen's noggin. We went to Chicago to this place (Cranial Technologies) because through all my research online, they seemed to be the most amazing in all areas from professionalism, research, before/after, advertisement, and specialty~and truly most importantly, they got us right in!!!

Why did we need to go? I have uploaded the following photos to try to help explain it.
What Owen has is called Plagiocephaly. Since about his 2 month appt, I have been mentioning his head shape to his doctor. He just said it was fine. I felt though, that as these months have gone on, it's just worsened. It was round at birth, but had been changing slightly over time. In fact, at a couple appts, Physical and developmental therapists have strongly urged me to keep him off his head COMPLETELY. I didn't quite understand how to do this for many reasons-1) he prefers the back of his head and can get to a flat position thru squirming regardless of how well he's positioned, propped, etc. 2) I can't hold him all the time even though he prefers it :-( and they recommended it as a solution)-do they have kids??? 3) he can't do anything on his own, like sit up or do an exersaucer due to his small size and inability to hold himself up and 4) he spends time in many "different" places already-swing, bouncy, bed, boppy, etc but, apparently, it's all on his head when you think about it.

Ok, so it's actually a form of plagiocephaly, called brachycephaly. It's where the back of your head flattens and makes your head longer, pointier, and wider. It can also cause some assymetry of your ears and forehead (sometimes even eye sockets, jaw, etc).

So, what can they do about this? They assessed him to assure the severity warrants correction (none of us have perfect heads, so a little assymetry is no biggie). So, for Owen's head, they decided it was moderate which is good news. If it were severe, he wouldn't get good results from correction. If it were mild-they'd just hope for the best and monitor for worsening. But since his is in the absolute best time for treatment (babies 3-6 months have the best chances for successful remolding) they recommended Owen get treated ASAP to avoid further complications and eventual hardening of his head in this shape (or worse) which could not be addressed.

Why fix it? Obviously, because it's so mishapen...so if it's possible without risk/harm to him to get it to reshapen, then why not fix it? 2nd, it will tend to worsen until it hardens (it being his skull) so it will continue to widen and lengthen. Plus, his ears have already started to shift assymetrically and his forehead has been pushed out a bunch. As all parents do, I want the best for my child. If I pass up this opportunity or ignore it, it is possible that he suffers in the future from various effects from not doing anything. We don't know how much worse it will get but if we don't fix it now, we can not go back when he's 2 and say anything but oops, shouldda done something about that then.
I have had recommendations to see another specialist at Riley to address the issue but I have heard that they don't band, but instead helmet which is less proactive and thus less effective and not often treated since helmets don't get great results. Otherwise, Why not wait for Riley? Unfortunately, they can't see him for over 2 more months!!! That's crazy-since, the longer we wait, the less "good" the results will be. What poor grammer;-)
Will this hurt Owen and how does it work? No, of course it won't hurt him. If it did, they wouldn;t have been able to help over 35,000 kids over 18 years. It works by applying gentle pressure to the areas that don't need to continue going the wrong direction, while allowing the places that need expanding room to accept growth. Not the best explanation-but the best I've got;-)
Here are the pictures to show you more:
Picture 1) I couldn't resist-nothing to do with educating on plagiocephaly,
beyond that he's gorgeous no matter what! Hats help;-)

Picture 2) You can seethe narrowing of his forehead and widening of the sides
of his head and see a little mild ear assymetry

Picture 3) You can see the "flatness" of the back and the buldging of the front.

Picture 4) You can really see the flatness of the back and buldging of his forehead. Plus, the height of the top of his head is very "tall" and "egg-like".

Picture 5) You can see the wideness, and the buldging of the base of his skull
and a little more ear assymetry-not the best picture

Picture 6) Here is the trapezoid shape that I first noticed that queued me to a problem. It's narrow in front and wide at the bottom and his forehead is a little higher on one side

So, here's what his cool band may look like...Isn't it super cute? I hope to find some talented sole to help me decorate it with his name and a construction theme-with the words "under construction"...isn't that fitting? I thinks it's espcecially poinant as God's not finished with any of us yet;-) This is a cranial tech "calendar baby", just so you can see what his band "may" be like. Each band is unique to the baby's needs so really no 2 are alike.
And, no-bands don't hurt the baby;-)
So, I'm hoping this all works out...I am definately worried about insurance not approving it since, I was referred to Riley, not Chicago-but I can't help but be proactve and an advocate for my baby. So, if they won't pay for it, it's VERY expensive and that would be yet another expense-ok, you get the point. Bills stink. Even if it is covered (which would be HUGE), we will potentially need to make WEEKLY visits to the clinic in Chicago (almost 300 miles round trip) for 4 months! Wow, some quick computations at 17 miles to the gallon-no, no-don't even tell me-the number is too painful. Not to mention, it would be like having a new part-time job, 6-8 hours a day, once a week.
Ok, none of it matters-Owen matters. God will provide and work out all the details-I'm not the driver, I a mere passenger-in fact, God would prefer I just get in the trunk and come along for the ride. He needs no road map, nor co-pilot, nor back seat driver to tell him what I need, or what to do. He knows. He's got Owen covered;-)
If you have any questions, don't hesitate to ask..I'm quite candid as you can tell;-)
Thanks again for checking in on us and please continue to keep us in your prayers.~R

Wednesday, May 16, 2007

News, no news, and news

So, we had our 3 appts in INdy. The middle was the most important to me and it yielded the least info-no news;-(

Our first appt with ENT gave us news...not what we were hoping for -Owen indeed needs tubes. We have surgery scheduled at Riley for June 12th...early am;-6

Our 2nd appt was with the geneticist. I was/am dissappointed-we didn't get to see the Specialist we were expecting and we really learned very little we didn't already know. Owen had blood tests and full skeletal surveys (xrays) and a cat scan. Fun, fun. He did quite well and was a real tropper today with lots of pokes and proding and little time for naps. The blood work will take about a month and the xrays will go to Cedars Sinai in CA-we are to expect 6 months for the results-UGH, major UGH!!!

Our 3rd appt was with urology-the best news of the day, Owen needs no intervention nor close monitoring of a "pee-pee" related issue they were originally concerned about. He will be reevaluated around 18 months if I feel he hasn't improved (he should grow out of the pee-pee issue;-).

So, that's all folks-ho, hum. I guess no news is better than bad news. I'm the most dissappointed because I went with a dx in mind and the MD just blew me off. I'm getting used to that. I wish I could find a doctor who really listens;-( Oh well, the Lord has other plans-like for me to persevere, be patient, etc I guess;-)

I head to Chicago tomorrow to the noggin specialists. I'm nervous about the insane drive-just me, Jakes and the O are heading up there. But when the eval is over, we'll head over to see Amy and little Quinn and that is exciting as I haven't seen Quinn in person for 3 years!!!! She's doing great and is scheduled to get her trach out later this month!!! Yea Quinny!

Ok, later gators. Back to the Price is Right Million dollar extravaganzza!!! We'll miss ya Bob!

Friday, May 11, 2007

What's Cookin'?

I'm rotten!

My 1st solid foods via a spoon! Yum-yum!

I'm stuffed!

How bout' some Owey soup? I was feeling a bit creative getting ready for a show and me and the boys snapped these pictures...don't they just make you want to buy cookware???? :-)

Ah, the seasoning is just right.

How long do I have to stir myself?

Seriously mom, you need help.

Two Owen's????

A new friend!!!!

So I guess I'm not the only special little guy with the name Owen. Mommy met another mommy thru her parents of little people email group who has a 3 month old named Owey just like me!!! He's so cute isn't he? Another cool thing...he has a new baby cousin named Drew just like I do! But he's met his cousin Drew already and I haven't met my new baby cousin Drew yet-as he's just a month old now! Well, mommy was just so thrilled about this, we decided to share! Incredibly "small" world, isn't it? Oh, by the way-this Owen's mommy was also told he would likely not make it once born due to his dwarfism...isn't that amazing?

Wednesday, May 09, 2007

Can you say cute???

Just a quick post as we're off to Riley...Owen is way laid back today and oh so cute!!!! I'll update later if there is anything of interest from today's appt;-)

Addendum: The pictures say it all. Picture one is saying "what do you think you'll learn today that you don't already know , mom-chill." Picture two is saying "zzzzzz.....zzzzzzz....which is what you'll wish you did instead of waste your time at that appt.

Seriously though-I learned nothing except that Owen would benefit from a special Catscan to make sure his noggin is ok and that there is this awesome chair/seat that he should be using called a bumbo seat...I got right online and found the best deal available and it's hopefully on it's way in cool lime green-pics to come of Owie stylin' in this awesome baby seat to help him sit cause he can't;-)

Sunday, May 06, 2007

I'm 6 months old!!!!

My first 3-6 month outfit! I christened it by having a nice blow out
the 1st few minutes I was wearing it;-)

Hey Everyone,

It's the Owester-miester here...that's what mom, dad and my brothers call me. Along with Owester, Owenator, Owey, Gorgeous, Beautiful, etc. I'm not really sure what my name is!

I finally hit the BIG half year mark. Mom tears up to think of me as 6 months old! I'm getting big too! At my six month check up, I weighed 11 pounds 11 ounces and was 22 1/8 inches long. I'm doing pretty well. I have a few new things that I'm really liking. Mom and Dad got out my Exersaucer, cleaned it all up and rigged it up for me so my legs will reach so I can play in it;-) I also am enjoying my little people farm overhead gym and my new be'be' pod chair. It's so cool, mom will have to take a picture of me in it so you can see it. Oh, and I really like mom to carry me around in the hip carrier she got;-)

I'm starting physical therapy soon to help me gain strength and coordination-especially with my left side and being on my belly pushing up on my arms.

I have my big appointments in Indy coming up. I am heading there this week to see developmental specialists (just to make sure I'm on track) and then my really big day is on the 16th when I see 3 specialists in one day. Aunt Heather is coming with me and mom. I also am waiting for one more appt to be scheduled with a neurosurgeon just to make sure everything with my noggin is ok.

I'm really happy and everyone is always going on about how cute and sweet I am. It's hard to be humble:-)

I think that's about it for my 6 month update. Check back for more updates soon and more pictures too of course!

Love and sloppy slobery kisses! The Owester