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!

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;-(

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

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!

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?

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;-)

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

Finally home...

Mark 9:36

He took a little child...in his arms....

This isn't the whole verse but it really helped me thru this whole past week and a half. My last entry about Owen having "Spring Fever" was an understatement. He went on to top out at 105.7!!! Very scary to say the least but I knew that Jesus indeed had him in His hands the entire time. And did I mention I was sick for 3 of these days?...ugh.

The whole mess came to a head after 6 miserable days (and nights) of fever and then on Saturday when we headed in to Urgent care and were finally diagnosed with pneumonia! We were sent home (relieved) to take care of him at home. But then, he kinda crashed that night and we were admitted to the hospital and stayed their until today when we were finally discharged.

But now we're well at last. He does still have pneumonia actually but the antibiotics have done wonders, except for his bottom which has SEVERE diaper rash! Poor baby. Here are some pics of our hospital times. Thanks for praying for him!

My temperature has dropped 11 degrees in 12 hours and you're photographing me? Seriously?

Don't come too close to me or I'll club you with this thing!

Ah, this is more like it. Thanks Mamaw Becca and Papaw Andy for the balloons!

Ok, so I'm busting out of this place later...shhh...don't tell anyone;-)

Spring fever?

Yes, Owen indeed has Spring fever...104.7 degrees to be exact. The MD says it's likely viral and I will just watch him. He's quite pathetic being a lil' sicky and all;-(

Here are some pictures from Easter my soon to be brother in law Jason took;-)

Little Update

Mark 16:6

"Don't be alarmed," he said. "You are looking for Jesus the Nazarene, who was crucified. He has risen! He is not here. See the place where they laid him.


Owen had his 5 month RSV vaccine shot yesterday. Thus, he was weighed and measured. He weighed in at 10 pounds 15 ounces and was 21 1/4 inches long (that quarter inch is impressive;-).

He's doing great and looking forward to Easter and all our visitors including family who haven't seen him in person since he was born (since they live so far away). I know they are all soooo excited to see him and love all over him, and the TJ and Jake of course!

I pray that you have a blessed Easter and rejoice because He has risen!

Welcome to Holland!

Proverbs 16:9

In his heart a man plans his course, but the LORD determines his steps.

I found this great, and inspirational story, thru LPA by Emily Pearl Kingsley (1987) that I want to share with you. She wrote on her unique experience of what it feels like to be dealt a different hand than you expected with regards to having children. I hope you find the same meaning in it I did...it was/is very moving to me. I have included my thoughts on my "own personal trip" at the end of her candid story. I truly hope you understand the comparison and genuine tone that I purposed to convey. Enjoy!

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.

You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go.

Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy.

But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. ---The end.


I truly get what this loving mother was trying to say...except I have a slighty different trip planning experience. And I would like to tell you about how I ended up, also in Holland.

As you know, I was planning for our 3rd dream trip to Italy and was about halfwaythru my waiting game for the fabulous vacation to embark...when we rec'vd news that my passport was on hold-and I would need to wait and be patient-no one was sure if it would come thru, and the trip may not happen at all. I worried that this third trip to Italy may not happen, even with all the careful planning, prayer, patience, etc.

But as weeks went by, things started to look up (though there were many ups and downs while waiting). Eventually, I got cleared to go to Italy-but we all had to go immediately to board the plane. Yes, it was a bit earlier than I had planned to go and this time of year in Italy wasn't as I'd hoped for in 8 weeks, but-I felt blessed to be going again-even early. I was finally in route to Italy, when the captian announced "We are experiencing some problems, we are going to be making an emergency landing, our engines have gone out, we're losing altitude, brace yourselves-we may not make it to Italy-or at all-we may land in Holland, we just aren't sure yet".

So in a flash, I thought thru what Italy would've been like again, and prayed that not only would we be spared and land safely, but selfishly that our plans to Italy could somehow continue.

It is such a wonderful place and I'd known of no other experiences like my previous 2 precious, precious trips to Italy. I mean, come on...we've come this far. We have to make it to Italy. Right? No one plans for Holland...it's not the trip I dreamed of-it's different, I've heard of it, yet, I just don't know much about it...and I don't even know if I want to learn more about Holland.

Then, in a miraculous emergency landing, we were spared-but it was touch and go. It did seem that we just might make it to Italy after all...just a short lay over to do a thorough checking of everything. Our captian just asked that we had patience-but he assured us that Italy was in sight. Finally, Italy really looked like it was in our future yet a 3rd time and we were all so very thankful.

So we spent our time so close to Italy, just waiting to make sure we really would end up in Italy, yet a 3rd miraculous precious time...

Then, a different captian came over the speakers and said-I'm sorry, but we were wrong-you're not going to get back to Italy after all...travels there are impossible this 3rd time. But the good news is, you will be going to Holland instead. In fact, it's your only option so you will have to get used to it, as from today on, you'll be in Holland. We'll tell you more about Holland in Mid-May but in the meantime just try and get used to Holland on your own...

Holland...How did WE end up in Holland? I thought we were good to go with Italy!?!

Well, it's been about a week now...

No, we haven't spent much time in Holland yet. There's a lot to learn and many unknowns about this place. But this Holland, is a sweet, sweet place.

Just not what I'd envisioned since I'd dreamed of Italy again. And, although Holland is different, I'm finding myself not caring-not even missing Italy. Holland doesn't seem all that different yet (but I'm told Holland will be more and more obviously different as we spend time here).

Yes, my friends all know only about Italy (at least know of it well, anyway), or only plan for Italy in their future. Just like me, they never dreamed any of us would end up in Holland-but I'm thinking about the positives about how they can still visit us in Holland, and learn about Holland. We can learn together. I know they'll love Holland, even though no one dreams of it, nor plans trips here.

I've been to Italy 2 times before, and for that, I'm so thankful. I still love my 2 trips to Italy and wouldn't trade them for anything. I hope everyone who desires grand trips to Italy IS blessed with them. It's worth it. It's worth every headache and expense and worry. All the time planning, praying-ah, all so worth it...everyone knows or dreams that Italy can be so WONDERFUL!!!

But now, I am focused on my journey in Holland. I want to learn everything about it I can-I NEED to make it the best trip ever, since it's the trip I'm now on. Our family will really love Holland. No, we didn't plan for Holland exactly. But everyone knows that while there may be bumps in the road to planning for Italy, we all still hope to end up there.

We have already accepted our detour to Holland. In fact, it already feels like home. We did not consider this destination but for that brief time while we were still hoping for Italy-always knowing Holland was a possibility...

But now, I find myself concerned that many of our friends and even family don't realize we've landed in Holland. Nor that we are staying here for now. We will make the best of it and just enjoy every minute we are blessed to be here in Holland. Holland is quite beautiful, even though it's not Italy. Yet, how do you tell others about this change in your travel plans-I mean, they all thought you've been essentially in Italy for 4 and 1/2 months! I know I'm confused, so how can I explain how I ended up-- no we ended up, in Holland?

I worry-do people want to know why you're all of a sudden in Holland? Do they think it's weird? Will they be excited for you? Will they mourn for you? Will they tell others that you are in Holland? There ARE so many questions...I know, it all happended so very fast.

Yes, it is different. It is not what we dreamed of when we planned our 3rd trip. It is not where we thought we'd end up. But we feel so very blessed to have this chance to be in Holland and experience this different place. This is obviously what God planned for us. He loves Holland too. I mean, He made Holland. He knows few people plan trips to Holland purposely, yet He wants us to embrace Holland-all of us.

We are looking forward showing you how great Holland is. I want to tell you all about it and how beautiful I've already found it to be!

We still want to help all those who plan for Italy and we'll still rejoice for you when you end up in Italy. We just want you to see that for us and many, many others, Holland is really, really great too.

We even think about another try at Italy...down the road, of course. But who knows where God will take us. We may get to plan another trip or just enjoy our 3 trips-different but equal, to both Italy and Holland. Lord knows there are challenges along the way with ALL trips!

We hope you'll visit Holland and embrace Holland with us-it's not really all that different from Italy. It's still so, so beautiful, and fun, and worth every tear and ounce of energy that went into planning for Italy. I'm not mad that I'm not in Italy again. I don't want you to be either. This change in our destination will make all of us appreciate Holland and so many places other than even Italy so much more. Man though, I still love Italy. Both trips. Everyday.

But, I am so excited now that I know I can just enjoy Holland. After all, His plans are not our plans...but His plans are perfect. Whether Italy, or Holland, or wherever...

I am looking forward to sharing more with you about Holland!

Oh, by the way...I've found in this short time that thousands of people end up unexpectedly in Holland...it's nice to know that there are others who were in our situation who already know some things about Holland and want to help us get used to it here. :-) Not everyone isin Holland like we are because they have a child with Dwarfism, but all have children with a variety of special needs. This story was originally written by a mother whose son was born with Downs Syndrome...Owen doesn't have that, just in case you thought everyone in Holland is the same...there are many different reasons to end up in Holland;-)

---Not the end, but just the beginning.

My sweet little Owen

Ok, so I know this blog is "mostly" about my sweet little Owen...but I just wanted to reitterate how I feel about him...he's so sweet (and little;-).

We had our trip to Indianapolis March 17th to see the specialists from around the country who came to the first ever LPA Midwest Conference. LPA stands for litttle people of America. Many people don't realize that Little People are also known as dwarfs. A little person usually has a genetic condition involving the growth of their bones, and thus can have varied health challenges. They don't typically attain an adult height over 4'10"-but most are 3-4 feet as adults.

My precious Owen was indeed given this diagnosis. The many geneticists who saw him found different variances that all point towards a likely diagnosis of a skeletal dysplasia aka dwarfism. They were not sure of his type as it is typically said there are over 200 different types. One specialist (who found the gene for Achondroplasia, the most prevelant type) reported he believes there are over one thousand different types.

It was an amazing day where LP's and average size people-parents, grandparents and various support people of LP's all came together to learn more about their conditions and ways they can better manage their conditions. The doctors who volunteered their time and medical services were outstanding. One MD who was not even scheduled to see us, took great interest in Owen, and he saw us sitting on the floor in a waiting area and he came over and laid on the floor on his belly and talked to us and cooed with Owen, trying to figure out if he could help us. It was amazing to experience this type of genuine and obvious desire to help. He was one of the doctors who told us that he believes Owen does have at least some type of mild skeletal dysplasia. By the way, Owen stole the show as everyone adored him all day long!

We were not officially diagnosed because diagnosis can be very complicated. Owen has already had various types ruled out. The typical route of diagnosis is thru exam, skeletal studies (done via full body X-rays), and sometimes blood tests. The blood tests are only helpful though, if you know what you are looking for. The head MD who was over Owen's care is the same physician who viewed Owen's x-rays at birth (he didn't actually examine Owen then). At that time he did not feel the x-rays led to a diagnosis. But with this examination, he told us that he too believes Owen will be diagnosed with a mild form and that it can be a big deal later in life or never amount to much other than less than average stature. He will see Owen May 16th in Indianapolis again, which is the same day Owen will be evaluated for his hearing/fluid in his ears, and he will see a urologist as well.

All in all, I am relieved. I just love him so much...I didn't really care what the answer was but I just wanted to know so I can know that as his parent, I am doing as much as can be done and that we can prepare for his future and watch for various complications that can arise. Whew, that was a long (and run-on) sentence. It is amazing to me to think that God loves Owen more than I do. But He does. It is also humbling to me to think that God decided that the very best parents for Owen are Tim and I. No parent envisions their children before they are born as anything other than perfect-per the World's standards anyway. I know Owen IS perfect in God's eyes and I believe he will be a small but mighty man of God someday. I'm sure his story will be inspirational to others and he will be a great testimony of God's perfect and wonderful plan for each of us. I look with great anticipation to his future-I can't wait to see how God uses this precious child to continually bring Glory to Him.

Please be praying that we do get a diagnosis and that it would be correct (as it is common to get many misdiagnoses). And also that Owen would continue to progress and gain strength. He has a lot of catching up to do, mostly because he was 2 months premature but also because he has other challenges due to his physical characteristics that make motor skills a little more difficult to learn. He is doing WONDERFULLY in the verbal category-we swear he says "hi!"

It is normal to have questions and concerns and I would be happy to answer these things. Additionaly, a great site with lots of info about Little People is www.lpaonline.org It does a great job answering various questions and misconceptions about LP's, etc.

Thanks for continuing to check back on updates about our precious Owen...our sweet miracle baby.

Call CPS...

First Tim leaves him covered on the couch, and tonight I forgot to strap him in his swing. Poor, poor baby! His little feet were dangling over the seat end. Note to self...strap baby in.

Thankfully, the Lord protected him again!:-)

Just thought I'd update about his last appt. It was a week ago on the 2nd (just a day shy of his turning 4 months old). He weighed in at 9# 12 oz...a seemingly amazing 7 pound gain from his birth weight. Not many babies have trippled their birth weight at 4 months...I mean can you imagine your 4 month old weighing over 20 pounds? (ok, maybe my sister in law Les could) :~P

His length was 20 1/2 inches. He was 14 1/4 at birth so great strides are being made there too, even if he is just in newborn size clothes (with the sleeves rolled up;-). He's actually a little tub if you look at the weight for height growth charts. He is in the 90% percentile!!!

But, for his age (even corrected to 2 months) he hasn't quite reached the lowest percentile on the weight and length for age charts. I was encouraged though that if he has nothing genetically wrong, there are options in the future to help him along.

Nonetheless...I don't care. He's so amazingly sweet and precious to me. His smiles melt my heart and warm my soul. I am enjoying him so much...even more than my first two. I think it's also a maturity thing. There are so many stressors as a first time mom, etc. But now, I'm quite laid back and relaxed (at least for me).

I feel back to normal again too...well, my normal anyway;-)

I am heading to Indy on the 17th to see geneticists and other bone dysplasia specialists to see if we can get a diagnosis...I don't care anymore whatever may be. I just think it is wise to know as much as we can so that we proceed thru his infancy, etc properly. It will be a long day but I am excited about it. My sister Heather is going with me so, I'm quite excited to spend the time with her.

I guess that's all for now. Blessings to you!

Random...

Ecclesiastes 11:9

Be happy, young man, while you are young, and let your heart give you joy in the days of your youth. Follow the ways of your heart and whatever your eyes see, but know that for all these things God will bring you to judgment...


I like this verse I heard at church a couple weeks ago...it was shared by a Moldovian youth pastor who said it was the verse that brought him to salvation. I, at first, thought it was a negative or sarcastic verse. But after more thought, I think that it is easy to correlate judgement with negativity. Yet, judgement simply means the prospect of divine praise or blame-so it's actually a verse that holds great promise and comfort. God sees both the good and bad things that we do-not just the bad. And of course, we all mess up (daily for some of us;-). I am thankful for such a loving, forgiving God!

Speaking of things we do, Tim was holding Owen the other day and he (Owen, not Tim) was SOOOO fussy. So, finally, in desparation, he covered his head with the blanket to decrease his stimulation and he (Owen, not Tim) calmed down and fell asleep. A little while later, he (Tim, not Owen) went upstairs and I was on the phone and I was wondering if he put Owen in his bed. As I looked around, I saw Owen's blanket on the couch and wondered why he (Tim) didn't take the blanket with him...low and behold (see picture one) the blanket was not just a blanket at all, but my poor baby.




Picture 2 shows proof after I uncovered his precious sleeping face;-)




Oh well...he's fine:-) We have a check up on Friday, which I'm looking very forward to. I will update then with Owen's latest acheivements;-)

So many measurements!

This is a photo taken on Valentine's day after the blizzard of our back patio...

It's not an optical illusion-the boys are standing on drifts that were as high as the door knob!!! In Lafayette we had 17 inches of snow fall and we had drifts in our yard 5-6 feet high!





Such a sweeetie!

More measurements for my precious 15 week old!

I weighed him today and we hit the 10 pound mark!

I measured him (this was a task) and he was around 20 inches. While he is still not on the growth charts and though his length is very far from the lowest percentile, I am encouraged that if he were charted at his gestational age of 7 weeks, he would be on the charts;-)

Nothing new to report otherwise. Owen has stayed healthy and strong thus far. He is eating well and gaining weight. He has even had some decent stretches at night without eating. He still sleeps a ton, but he's very social when he is awake. He's so very vocal! So he's not only a noisy eater but also a noisy chatter bug (which we love!). All for now...

New Pictures!

I'm getting to be a big boy...over 9 pounds now!



Seriously?



I mean it-Seriously, mom?




New duds from Mamaw Becca for Valentine's

Whew...what a week!

I love you this much!!!!

AND I'M 3 MONTHS OLD TODAY!!!

We had a very busy week...actually couple of weeks.

Here are some updates:

Owen went to the pediatrician Monday for his RSV vaccine. He weighed 7 pounds 12 ounces and was 18 3/4 inches long.

Tuesday we went to Indy to see the Pediatric dermatalogist...after an hour an a half waiting, we were examined and advised to watch them (the hemangiomas) closely-duh.

Wednesday we went to the ENT in Indy for Owen's ear check. After waiting over 2 hours, we were seen to check his ears and they showed occlusions in both ears this time (it was just his left before). Then we were sent back out to the waiting room for over another half hour before being seen by the student MD...he couldn't see in Owen's ears because they are so small. He had to consult with his "boss" a very elderly MD, who after we waited for for another 15+ minutes, who consulted another MD (probably a younger one) to see when Owen should have surgery to drain the fluid and place tubes. They decided to wait until he is 6 months old and reassess.

So, please PRAY his ears heal and he wouldn't need surgery, and would suffer no long term hearing loss or developmental delays from the current hearing loss caused by the fluid. We know he can hear us. He is even looking at us, engaging in active interest with us, etc. He even cracks some smiles and coos now! He's still having some feeding problems so please pray we would figure out a good solution to keep the work load of his eating time less for him (and us;-).

As always, I have a few new concerns-as you can tell, I'm not so convinced there's nothing wrong with him. I started noticing one of his eyes not looking at me when the other is. It's like when you are looking at someone and you don't know which eye to look at. This really bothers me and I don't know how I should persue. My doctor is either going to be able to buy something really nice with all our visits or ask me to change offices because I bug them so much. Owen is just so small to me. Even his hands and feet are small. So, it's probably not him, but me. So, maybe you should pray for me to receive peace about him. Don't get me wrong-he's 100% perfect to me, but I want to do the best thing for him and if there are treatable problems-fix them. Here's another cute picture:

Got milk?