Maysa's Blog

Our journey through plagiocephaly and brachycephaly

Posts Tagged ‘Virginia’

Bootiful Halloween 2011

Posted by mymaysa on October 31, 2011

What a great day and night Halloween was this year!  I always worry about the weather being too cold, rainy or windy, but not this year.  We had some sun, no wind and it wasn’t terribly cold!

Since Maysa saw her sister perform in the dance performance The Beauty and the Beast, this past summer, she’s wanted to be Belle for Halloween.  We’ve been working on her costume for a long time but we did it.  Maysa was Belle for Halloween and her sister was Rapunzel, so once again, my princesses were princesses, and once again, they were fit for it.

Below are a few pictures of Maysa and her sister at Mount Vernon where we went for a photo shoot.  Our beloved photographer, Jennifer Wells, has moved out of the area but I think my husband and I did a pretty good job at capturing some really great memories…

Here is my favorite of the two of them together:

Rapunzel and Belle 2011

Here is another one of Maysa sitting on the grass with her warm yellow cape and sweet smelling red rose…

Maysa Belle with her Cape and Rose

And another one of my favorites…

Maysa in Belle Dress

I also love this one.  Maysa was giving us silly smiles and her sister couldn’t stop giggling.  Love it!

The next morning, it was Maysa’s Halloween parade at her preschool.  As one of her teacher put it, she was the Belle of the Ball.  She wore her cape as they paraded on the street and smiled the whole time.  She also posed for pictures, waved and twirled, just like a real princess.  She loved it, and well, so did I!

Maysa Belle at her Preschool

Maysa Belle Parading

Back at the preschool, they had a party.  I did have to take off her petticoats so she could sit.  She had a lot of fun and the food was so yummy, especially the cookies and the cheetos…

Bon Appétit, Maysa Belle!

And here is one last one to show off her perfect Belle bun.  I did it myself.  Not bad huh?

Belle Bun

Both Maysa and her sister went trick or treating that night.  Their cape kept them warm and their princesses’ shoes made it so that we didn’t have to go through the entire neighborhood 😉

What a BOOTIFUL Halloween it was…

Posted in Maysa, Pictures, Uncategorized | Tagged: , , , , , , , | 3 Comments »

FDA Warning Letter to Eastern Cranial Affiliates

Posted by mymaysa on December 17, 2010

Somebody in Central MA loves me, my Maysa, and a lot of other babies in the Metro DC area.  Whoever you are I love you too and THANK YOU!  

Yesterday, I received the best piece of mail of the season, maybe the best piece of mail in my entire life.  The letter was addressed to me with no return address, but a stamp on the envelope shows that it came from Central MA.  It looked suspicious so I opened it first.  The letter contained three sheets.  On the first one, a big:

NOTICE

RE: FDA WARNING LETTER – EASTERN CRANIAL AFFILIATES, LLC

I am thinking what now?  What is Joe Terpenning sending me this time?  So, I go on to the next two pages only to realize that this one is really not addressed to me but to Joe Terpenning himself.  It is available to the public on the web.  Here it is: http://www.fda.gov/ICECI/EnforcementActions/WarningLetters/ucm234347.htm.  If you’ve been following Maysa’s story and wondered even a tiny bit if any of what I wrote was ever a little bit too much, then you have got to read this letter.  The FDA actually paid his firm a visit and the warning letter that they issued as a result is a loaded three page document.  Needless to say that I knew nothing about it until yesterday.

I feel vindicated.  Happy Holidays!

Posted in eastern cranial affiliates, Maysa | Tagged: , , , , , , , , , , , | 8 Comments »

The latest report(s)…

Posted by mymaysa on January 28, 2010

There are a few things you all need to know before you look at the reports: 

  • First of all, we didn’t see Laura Plank so the reports that I have do not reflect a comparison between now and her April scan.
  • The orthotist we saw was really nice and compationate and we actually didn’t have to pay a penny for the time he spent with us or the reports he handed us.
  • Right before he scanned her (and Maysa was screaming her lungs out and mad at the world) he told us that because of the thickness of her hair we were most likely to see a flat area on the scan.  To tell you the truth, I thought he was going to say that he wouldn’t be able to scan her BECAUSE of her hair.
  • To reassure me that her head wasn’t flat at level 3, he also gave me a level 2 report that shows how round it is right below level 3.  As you can see below, there is no way (anymore) that her head could be that flat at level 3 to then be round again at level 2
  • Also, remember that Maysa’s flat spot was never on the back left side but rather on the back right side.  So, in other words, ignore the flatness you see in the level 3 report.
  • At home, when I overlaid the scans (January and April), I found that the January scan was a little bit off-center, a little too much to the right and that is probably why her right side looks fuller than her left in that one.

Now, here are the reports:

Level 3 Report:

So, first of all, I removed some info at the top and added in the “Shape 2” column her numbers from the April scan.  Again, as you can see, she grew over 2cm in circumference.  She only grew about 1mm in width and almost 10mm in length.  Her plagio also got slighty better, although in real life it looks even better, and most importantly her cephalic index is down to 88.4% at this level (Level 3).

Now, in the Level 2 report below, you’ll notice how much rounder her head is in the back.  Non of that  non-sense flatness that you can see in level 3:

You might also be wondering why her ears look funny.  That is because her hair was sticking out a little on the right hand side.  The cranial breadth changes at that level but the orthotist told me that it was mainly because of the ears that show at that level.

One thing I am still not sure of is where her head actually grew in length.  When I overlay the April and the January scan, most of the growth seems to have happened in the front and a little bit in the back.  I never thought that her head would grow that much up front.  It is hard to say because the center point of the two scans are a bit off center.  That is really matter: No.  What matters is that we have an oval looking head that is not flat anymore with such little asymmetry.

Can you believe that the report below belongs to Maysa?

Posted in Maysa, Orthomerica, Pictures, post DOC band | Tagged: , , , , , , , , , , , , , , , | 5 Comments »

Mirrored Looks

Posted by mymaysa on January 20, 2010

It’s been almost 8 months since Maysa graduated from her 2nd DOC band.  She’s basically been out of it for as long as she has been in it.  She also turned two recently and I keep thinking that things are getting better and better post band…  I don’t take as many pictures as I used to of her head (top view, profile, front…) but I was comparing the two pictures from her 1st and 2nd birthdays, the other day .  She has changed a lot, I think, but while I know she has, it is not until I mirrored the two pictures that it became very obvious to the naked eye. 

So, here are the two pictures I kept staring at.  In the one on the left, she is one and under treatment with the 1st DOC band.  On the left, she is two and done with treatment.  Do you notice the differences?  If you are somewhat like me, you probably do, but if you can’t quite put your finger on it, take a look at the set below this one:

Do you now see what I see?  Look at her ears in the mirror picture when she was one and the right side of her face.  It’s almost like somebody had come and grabbed that part of her face and pulled at it.  That right ear in the mirror picture is higher, her cheek is higher, the bulge over that right ear is also more pronounced.  I never thought back then that she had much facial asymmetry but boy was I wrong…  In the recent picture, her ears are aligned, her head doesn’t seem so wide, and except for one eye looking a tidbit smaller than the other, I would say that her asymmetry is close to zero, at this point.  I also have to say that her face has gotten longer and this has helped with the overall aspect of her head not looking so brachycephalic (wide).

I’ll have to try my best to take more comparable pictures of her head from different angles, but by posting this entry, I just wanted to kind of give an update as to what things look like now in retrospect to a year ago, back when I thought things would never really look normal again.  I do think and know that the DOC band helped fix several things a great deal.  She’s also been improving on her own since…

Posted in Birthday, doc band, Maysa, Pictures, post DOC band | Tagged: , , , , , , , , , , | 3 Comments »

DOC Band Babies Calendar 2010

Posted by mymaysa on December 1, 2009

Guess what?  I got a message yesterday from Sheryl at Cranial Technologies in Annandale, VA:  “Congratulations, Maysa has made it into our DOC Band Babies Calendar 2010!”.  I couldn’t believe it.  I have been wondering when we would find out but didn’t think they would call.  Yet they did.  So, of course, while cheering for her I went to the computer and searched for the calendar.  She didn’t make it to one of the big pages but she is there in the second page of the calendar at the bottom right corner.  So many pictures have been submitted and to see there, among the few that were selected, makes it very special.  Above is the picture they chose…

Way to go, Maysa and all other DOC Band babies, you are all so beautiful!

Posted in Calendar, Cranial Technologies, doc band, Maysa, Pictures | Tagged: , , , , , , | 4 Comments »

Happy Halloween 2009…

Posted by mymaysa on October 27, 2009

My Little Pink Fairy!

IMG_1309

IMG_1323a

IMG_1321a

About two weeks ago, I got to actually meet another plagio parent, Jennifer Wells, whom I met on the Yahoo Plagio Group.  I knew that she was a photographer but it’s not until she created her photo website that I got to see what kind of work she did, and let me tell you, she is fabulous! 

I took both Maysa and Soraya for the photo shoot and while I didn’t keep track of time, we were there for two maybe three hours.  The girls had so much fun and while it wasn’t too warm nor too sunny, the pictures turned out great!  Here are a few.  It’s been so hard picking and choosing!  Check out the Slideshows page above as well…

Thanks, Jennifer, and Happy Halloween 2009 to all of you out there!

Posted in Maysa, Pictures, post DOC band | Tagged: , , | 1 Comment »

EEG

Posted by mymaysa on August 13, 2009

Just playing on my big sister's bed!

Just playing on my big sister's bed!

Maysa went to her scheduled EEG yesterday. While it wasn’t painful at all, it was torture. Attaching those electrodes to her head was a nightmare and took forever.

I had to take her right after lunch and right before her nap time, so she was super cranky. Once all the electrodes were in place, I was able to lay down next to her. She drank a bottle of milk and then fell asleep. She was exhausted and she usually takes a 2 to 3 hour nap. Well, about 25 to 30 minutes into her nap, the nurse starts to wake her up. She was zonked out and didn’t hear her tapping loudly on the table, but she HAD to wake up. When she finally did, she cried and it really made me sad. She was so annoyed at the world and begging to go back to sleep. We couldn’t let her.  Not just that, I had to let her cry for a good 5-10 minutes. That is part of the test.

Finally the series of flashing bright lights came. She didn’t like that either… The nurse then came and removed the electrodes, she cried some more. She rinced her hair, she cried some more. I then put her back in her stroller and she walked out of Childrens National Hospital happy again. 

Just in case you wonder why Maysa is getting an EEG, she is been doing those (what we call) stress moves since she was about 4 months old and we don’t know why.  It doesn’t happen every day but when it does, and if we let her, she can go on for over an hour.  She gets on the floor, on the couch or in her crib, lays on the stomach, crosses her arms and sometimes holds her fists, crosses her legs at the ankle and gets as stiff as stiff can be.  She also breathes hard and pulls to stretch her legs even more.  It is so strange, I have no idea what this is all about!  We can get her to stop without her fussing too much but if you turn around, she’ll start all over again.  While we hope that they are not seizures, we are also hoping to get a better idea of what this could be.

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Front Page Star… Maysa!

Posted by mymaysa on July 13, 2009

DSC_1346 - Copy

Maysa has been on the Front Page of the Yahoo Plagio Group since Thursday and just like all other Front Page Stars parents, I’ve been asked to share her story.  Most of it is in her blog but definitely not all of it.  I am having a hard time deciding on what to tell about and what to leave out, and then, I am having a hard time finding the time to do it…

Let’s see how much of it I can share today…

I’ll start by where we are now and say that Maysa graduated from her second DOC band a month and a half ago.  She looks good especially in the back where her head is now nicely curved.  Her forehead on the other hand looks more pronounced on the sides than normal.  It is wider than what it should have been and right now, I am having a hard time fixing her hair in such a way that it will not accentuate it.  Yes, while most parents would love for their plagio/brachy babies to have hair to cover the imperfections, Maysa’s thick and curly hair is quite challenging.  I tried cutting it last time, but that was quite a disaster.  I am glad that she is too young to care!

Changes in the second DOC band were not as dramatic as with the first DOC band but she still grew on the back up to the point where there was no more foam to shave off the back.  She tolerated it just as well as the first one but did manage to pull it off her head a couple of times.  Just like with the first band, Maysa never suffered from any rash from it and always slept well in her bands.

Maysa got her first DOC band when she was 9.5 months old.  It was in mid October of 2008 and I was so depressed about what had happened with her head shape after being in a passive helmet from Eastern Cranial Affiliates for 3.5 months, I thought that Maysa would never look right again.  We had put all of our faith in Joe Terpenning and we had trusted him.  However, while Maysa’s head was growing in the back, like it was supposed to, it seemed to me, after the second month, that it was also growing on the sides.  My husband couldn’t really see what I was talking about.  A trip to Orthomerica to see Laura Plank confirmed my fears.  Maysa’s head had been growing all around: in the back AND on the sides.  If you go by the numbers from her reports, both her plagio and brachy numbers were worse after 3.5 months of treatment.  Joe had just told us that she only had about one month left in the band.  It took Maysa 7 months in two DOC bands after that to bounce back and get a better shaped head.

So October was a month I’ll never forget.  I had to get a script as soon as possible to get her in a DOC band.  Maysa’s ped is not a believer in cranial molding helmets and thinks that Maysa’s head will round out.  Thanks to a parent on the Plagio Group, I am able to get a script from Dr. Natovitz who thinks Maysa is still young enough that she’ll benefit from it.  I take that script with me, just in case Maysa’s ped doesn’t write me one, but I very well know that in order for her band to have a chance be covered, the script has to come from her ped.  So I go and see her one more time and break in tears in front of her out of frustration as I can hear what she is about to tell me: “It will round out on its own, just give it some time Mom…”  She then tells me that she’ll send in for a referral but that it will most likely not be covered.  I tell her that we are ready to pay out of pocket if we have to, but that we need the script.  She sends it in.  It is approved.  Maysa gets her band on October 31, 2008.

Timing was perfect.  The moment Maysa got in her DOC band, her head started rounding out.  I literally saw changes within the first week which prompted me to start this blog.  I had to find a good way to keep track of her progress and posting pictures without overloading the Plagio Group or my personal calendar.  I also thought that it would be a good way for parents who are faced with plagio and brachy to find some information and the simple report of what our experience has been. 

I never ever thought in a million years that Joe Terpenning would try to intimidate me and threaten to take legal actions against me for what I had to say about him, his helmet and our experience with them.  I will have to post the letter that my attorney wrote to him in reply to his threats.  The bottom line is no one can prevent you from feeling the way you feel about someone or something, and as long as you are not lying or making up stuff, you should be fine…  Could you imagine the Internet without reviews about businesses?  People without opinions about their own experiences?  Inimaginable!

Anyway, so prior to the DOC band, Maysa was in two passive helmets from ECA.  Two, only because the first one broke after Joe adjusted it.  I think that Maysa’s head started popping out in the back during the first month she was in it but then things went down hill from there.  What makes me really sad is that we started treatment when Maysa was 5.5 months old and I feel that had she been in a better helmet at that young age, her head would look so much better now if not completely unnoticeable.  I still kick myself for making the wrong choice there.  Parents out there, do your research in and out and all over again before you start treatment, please do!

So before that, from 2 to 5 months of age, we notice that Maysa only looks to the right and that her head is starting to look “funny”.  We have absolutely no idea what plagiocephaly or brachycephaly are.  We have never seen babies in cranial molding helmets.  We don’t even know that babies can have torticollis.  We are absolutely clueless!  The ped doesn’t think that she has tort, just a preference to the right side and tells us to reposition her to the left and to stretch her neck to the other side.  She never tells us to be agressive.  She just says that it will eventually round out on its own.  How many of you have heard that so far?  I remember that we went home the day of her two month check up feeling guilty that the fact that we let her sleep on her right side caused her head to be misshapen. 

This said, I am at home with her for a while and as much as try to reposition her, she always ends up on her back, and slighty on the right, always…  Not only that, she sleeps a lot, and every time I put her on her tummy for tummy time, she throws up.  As a matter of fact, I don’t even have to put her on her tummy, she’ll throw up even if she is just sitting!  It is very frustrating because by 4 months, I also notice that her head is starting to get wider.  We switch insurance and I take her to another ped for her 4 month check up.  Same story same line.  She is fine, her head will round out on its own as she starts to sit up.  Between 4 and 5 months, it still looks pretty bad to me and because I will be going back to work soon, I start doing my own research online.  Hence, the terms, the different helmets, the critical time to start treatment, the outcome, etc, etc…

At birth, Maysa looked just like any other baby.  She was born via C-section so her head looked perfectly round.  I will end this by saying why don’t pediatricians check for torticollis at birth?  Why don’t they emphasize tummy time?  Why don’t they recommend sleep positioners?  Why are some still not pro banding at an early age to prevent further damage? 

I am happy that Maysa’s head has received great correction from her DOC bands, but I feel sad for all parents after us that are or will be faced with the same ordeal.  I just wonder how long before something is effectively done to prevent Plagio.

(As I am re-reading this, I realize that I have skipped through a lot, but like I said at the very start, most of it is in her blog…)

Posted in Cranial Technologies, doc band, eastern cranial affiliates, Maysa, Orthomerica, post DOC band | Tagged: , , , , , , , , , | 4 Comments »

Maysa’s front views – day 1 up till now

Posted by mymaysa on July 6, 2009

I’ve been meaning to post these pictures for a while but never got quite a round to it.  Anyway, the very first one was taken at the hospital when she was 1 day old.  The very last one was taken today.

In this first set of six, you’ll notice how Maysa’s head started growing in width in April and then again in June.  She wasn’t helmeted yet back then, but looking at her January and March pictures, there was no doubt in my mind that something wasn’t right.

1-08 to 6-08

In the next set of six, the top three were taken before she received her passive helmet from Eastern Cranial Affiliates.  Look how much fuller her forehead looks in the November and October ones.  I just want to mention that on August 9th, I broke the ear flap on Maysa’s helmet after her orthotist heated it to adjust it.  While we were told at first that he would replace the helmet, it is not until September 18th that Maysa receives her second helmet from ECA. 

6-08 to 10-08

In the first two pictures that follow, Maysa is no longer wearing the passive helmet from ECA.  Her head has gotten wider than ever and we no longer believe in Joe Terpenning, his helmet or his practice.  Maysa gets her first DOC band on October 31st and within the following two months positive changes have finally started to occur.  Compare the October pictures to the December one. 

10-08 to 12-08

Between December and May, changes to the front are minimal.  The DOC band is holding her head on the sides.  Her head is growing in the back like it should.  Therefore, in the following set, she looks pretty much identical in shape.

12-08 to 5-09

These are the last three pictures of her May, June, July:

5-09 to 7-09

Posted in doc band, eastern cranial affiliates, Maysa, Pictures | Tagged: , , , , , | 4 Comments »

DSi 1,2 and 4 side by side

Posted by mymaysa on June 3, 2009

 I went back to Cranial Technologies to take the side by side pictures of Maysa’s first, second and fourth DSi side by side. 

dsi124 back

In this first set of pictures, notice how the light reflecting on the back of her head has gotten bigger.  The bottom back of her head looks a little bumpy but that’s because of her curls.  We couldn’t tame them very much.

dsi124 front

In this second set of pictures, notice how her head got longer, eliminating the wide aspect of it. 

dsi124 top

The last DSi is a little bumpy again, because of the curls, but notice how much longer and rounder it is in the bottom back.

dsi124 left profile 

 Compare the first and the last DSi…

dsi124 right profile

Here too, notice how much rounder her head is in the back now.

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Exit Photo Study!

Posted by mymaysa on May 27, 2009

Alright, I just received Maysa’s last Photo Study from Cranial Tech.  Besides the fact that she cried her lungs out, she looks fabulous to us!  My favorite shots are the top view and her right profile.  The pictures on the left go back to 10/20/08 prior to her first DOC band.  The ones on the right were taken yesterday on 5/26/09.

Here they are: 

CT photo study front view 10-20-08 to 05-26-09

CT photo study back view 10-20-08 to 05-26-09

CT photo study left profile 10-20-08 to 05-26-09

ct photo study left profile no pony tail 10-20-08 to 05-26-09

Left Profile - No Pony Tail

 

CT photo study right profile 10-20-08 to 05-26-09

Right Profile - No Pony Tail

Right Profile - No Pony Tail

 

CT photo study top view 10-20-08 to 05-26-09

Posted in Cranial Technologies, doc band, Maysa, Pictures | Tagged: , , , , , , , , , | 4 Comments »

Maysa graduates, at last!

Posted by mymaysa on May 26, 2009

It was rainy, traffic was awful, we got there late and while Maysa was all smiles when we got in, she ended up throwing one of her biggest tantrums by the time she sat for the final DSi.  She was still crying and annoyed when they took her pictures and didn’t stop until her clothes were back on.  Then, she didn’t want to leave…

maysa playing examination room

maysa playing toys

maysa doc band graduate

maysa crying

maysa playing with flip

maysa car ride

Amber, our orthotist, and Cynthia, who took Maysa’s pictures, were great, as usual!  They took us right in despite our tardiness.  From the clinical anthropometric measurements that were taken 10/20/08 to 5/26/09, here are Maysa’s numbers from start to finish:

anthropometric measurements

We are absolutely positively extremely happy with the results, the service, the people and their professionalism and everything that is somehow connected to the beautiful round head of our little girl.  We can’t thank you enough.  Even my husband who at first was skeptical is now amazed at the results.  Again, thank you!

Maysa has graduated but I am not quite done posting.  There is more to come.  I am heading back to CT to take some of the side by side pictures of her three DSi.  I will be posting those in time.  I also have other things to share but I need time to put it all together so patience!

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328 days – 1

Posted by mymaysa on May 25, 2009

We are spending our last weekend in the band.  It’s almost unreal.  According to wolframalpha, Maysa has been in under treatment for her plagiocephaly/brachycephaly for 327 days, or 46 weeks 5 days, or 10 months 23 days…  I don’t know too many kids who’ve had to wear a helmet/band for such a long time.  Maysa has been such a trooper!

Yesterday, we went to the park.  I wanted to take as many pictures as I could.  There seems to be a little bit of nostalgia settling in already about not having her in her band although we are ALL so ready to see her out of it!  Quite contradictory, isn’t it?

Anyway, here are a few pictures of her having fun in her band.  She gets it off tomorrow!

Maysa smilin park

 

Maysa park

 

Maysa choochoo train

 

Maysa carrousel

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Day 1 and 15.5 months later…

Posted by mymaysa on May 13, 2009

Maysa’s graduation from her second DOC band is fast approaching and I have been looking at several of her pictures from when she was much younger.  Well it doesn’t get younger than this.  Here are two pictures of Maysa below.  See how perfectly normal her head looked from this front view: not wide, not asymmetrical, not cony (her hair is sticking up a little, but that’s all), and look at her ears.  Where are they?  They are so flat against her head you can hardly see them.  I will be posting other pictures of her showing how her plagio and especially brachy altered her appearance throughout the months.  In the meantime, on the right is a picture of her now.  Her head looks wider and her ears kind of stick out, but it is not as bad as before she got treatment through the DOC bands.  The DOC bands really helped, I believe.  Not only did they stop it from getting worse, it made it so that she actually looks better.

1day_and_15months

Posted in Cranial Technologies, doc band, Maysa, Pictures | Tagged: , , , , , , , , , , | 14 Comments »

Top View Comparison

Posted by mymaysa on May 11, 2009

Here comes another post about Maysa’s progress thanks to the DOC bands she wore for the past few months.  Pictures like these were a challenge to take each time.  Being able to take a top view picture showing both ears was hard at first but is even harder now that her ears don’t stick out as much.  However, they have helped me keep my sanity and they’ve all been worth it.

top_view_7-27-08_and_5-11-09

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Week 15 in DOC band 2

Posted by mymaysa on May 11, 2009

After a beautiful weekend, we woke up to rain this morning.  I thought that traffic was going to be bad but we actually got to our appointment with Amber at Cranial Technologies right on time.  We are always seen right away and I’ve loved that about them right from the start. 

Today was our last “shaving” appointment with Amber.  Maysa was extremely playful in the examination room, dancing and all.  The rocking dog and the musical flowers kept her entertained.  When Amber walked in to remove her band and take her circumference measurement, she kept shaking her head “no”.  She always does.  Then, when Amber took the band to go shave off some foam for the last time, Maysa wasn’t too happy.  It’s the first time that she’s gotten upset at her taking it away from her…

Amber came back and had shaved off the foam all the way to the plastic shell.  I truly didn’t think that we were going to get all the way down to the plastic shell before the end of the 16 weeks.  I am extremely happy with the results we got, with the fact that Maysa’s head will be free again after almost 11 months, with the fact that no one will ever be able to tell that there was ever anything wrong with her head shape.  I am so glad we were able to treat her with the DOC band.

Her next and last appointment is scheduled for May 26th.  They will again take pictures of her, do another DSi and hand measurements of her head.  I will be posting about that for sure!

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Left Profile Comparison

Posted by mymaysa on May 9, 2009

Too often people will ask questions as these: Do plagiocephaly helmets really work?  Do they really help a baby’s head round out?  Are they really worth the price?  We know too well that many pediatricians will tell you they don’t.  Many will tell you that babies head round out on their own, that they are a waste of time and money.  Well, unless you want to gamble it, wait and see and then possibly regret not doing anything about it later, here are two pictures for you that speak for themselves:

maysa_left_profile_7-27-08_5-9-09 

 

I do want to add that I outlined both pictures and trimmed them (including Maysa’s pony tail in the 5-09-09 picture) so no one would be distracted by the background.  The DOC band rocks!

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Looking back…

Posted by mymaysa on May 2, 2009

Here is another comparison picture of Maysa.  On the left, she was 9 months old, awaiting her first DOC band.  On the right, she is 15.5 months old, six months into her DOC band treatment.  I couldn’t be happier that we switched to the DOC band after the failed passive helmet she wore for 3.5 months.  Now, her head doesn’t look so wide above her ears anymore and her ears have straightened up a tiny bit more.

head-width-comparision-3-six-months-in-doc-bands1

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Thanks, Melanie…

Posted by mymaysa on April 29, 2009

Thanks to Melanie (one of my online Plagio parent), I now understand why I wasn’t coming up with the same measurements as those from Orthomerica.  Back when Maysa got her first scan from Orthomerica, the part where her head was the widest was right at the center horizontal line of the graph.  Her head was also the longest at the center vertical line.  I always though that the cephalic index was taken by measuring those two lines, no matter whether they were the longest or not.  Apparenlty not.  Melanie explained to me that I have to measure the widest width on her head as well as the longest length.  Since she’s been in the DOC band, Maysa’s widest width has moved down below the center horizontal line (which is what should happen as the head should be wider in the back rather than the front of the head) and that’s why I was getting different numbers.

So…  After I took my ruler again and remeasured her width in the right spot, I basically came up with the same numbers.  Her last CI was a little better using the ruler: 92.68% as opposed to 92.99%. 

I also looked back at the two pictures from Tim’s report and the CI I came up with in the sliced view was 92.4%, so quite comparable after all.  The CI I got from the whole top view of her head was more like 89.7% which tells me that her head still comes out more on the top back than the bottom back by a few millimiters.

This said, I am still really happy with the results we got this far.  Thanks Melanie for clarifying things for me!

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Week 13 in DOC band 2

Posted by mymaysa on April 27, 2009

Maysa went in for another adjustment today.  Amber saw us and was accompanied by a colleague from the Connecticut Office.  Of course, I can’t remember her name.  I am so bad with names…  We briefly talked about Tim’s report and how neat it was looking at things from a different perspective.  She asked me how happy I was about Maysa’s progress.  I told her that I WAS happy.  After the disappointing results we got from Eastern Cranial Affiliates, and the actual improvement in Maysa’s headshape since the DOC bands, I HAVE to be happy.

I thought long and hard about asking Amber once again about shaving the band on the back right side, but after looking at Maysa’s head from every possible angle I truly can’t see the “5mm” plagio that’s still left.  If I can’t see it while knowing what I am looking for, then nobody else out there will either, unless it’s an extremely observant plagio parent or a orthotist.  I think that a lot of it has to do with the fact that her head is no longer flat in the back.  It is now round.  It has a curve that hasn’t been there since she was about 6 weeks old.  Amber gave Maysa a little more room in the band by shaving a little more off of it.  I believe that she only shaved the middle back right side of it but I am not sure.

Also, looking at one of the top view pictures on Tim’s report, I was able to overlay it on the scan from Orthomerica and draw the two diagonal lines.  I came up with the same 5mm diagonal difference, however, her Cephalic Index was much lower.  There were two top view pictures of Maysa’s head on the report.  One was similar to a top view picture I would take of her in the tub with her hair all wet, and the other one was a slice top view of it similar to the one that I obtained from Orthomerica.  In the first top view picture, the worse Cephalic Index I could come up with after several measurements was 87.5%.  In the slice view, the worse Cephalic Index I came up with was 91.25%.  This is much lower that the 93% I was given in April.  So I went back to the graphs from Orthomerica, took a cm ruler and measured the CI of the last three reports I got from them.  Here are their measurements and mine:

October 2008 CI:
– Orthomerica -> 98.3%
– My measurements -> 98%

January 2009 CI:
– Orthomerica -> 93.3%
– My measurements -> 92.5%

April 2009 CI:
– Orthomerica -> 93%
– My measurements -> 91.7%

Really, all I did was take a cm ruler and measure the length and width lines on the graph from Orthomerica to obtain the CI.  Have you STARband people tried that before?  I know that it’s completely silly to be competing with computer technology, but I felt so good being able to measure her CI at 91.7% by measuring her graph.  It is also closer to the 91.25% I measured on the picture from Tim’s report from Cranial Tech.  I’ll add to that that this is really what I feel her CI is at this point: around the 91% mark.

Also, we have one more adjustment left scheduled for May 11th.  In four weeks we have our exit appointment.  It will be right around Memorial day weekend, a day to remember.

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Protected: The Mid Treatment DSi Report from Tim

Posted by mymaysa on April 24, 2009

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Week 11 in DOC band 2

Posted by mymaysa on April 13, 2009

Maysa went for another scheduled adjustment this morning.  We were seen by Sheryl and not Amber today, she was tied up with a consultation.  Sheryl looked at Maysa, felt her head, commented on how nice and round her head looked.  She put the band back on to see if it needed to be shaved again.  I asked her if it could be shaved on the back right side a little.  She said that until “Tim” reviewed her mid DSi she wasn’t allowed to shave the band there.  She said that it was a brachy band and that the protocol of those was different.  She did shave some more off of the middle back though…

She also told me that “Tim” hadn’t had a chance yet to review the mid DSi but that, as soon as he did, Amber would give me a call.  Maybe today, maybe tomorrow.  I just want some foam to be shaved off that back right side to bring down her plagio numbers.  We are starting week 11.  We have 5 weeks left in the band.

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Mid DSi

Posted by mymaysa on April 8, 2009

8:00 AM this morning, Maysa and I go in to see Amber.  She (and the whole world) knows that I regularly take Maysa to Orthomerica for scans and I’ve showed her previous ones before.  I briefly explain to her what Laura Plank showed me on the graphs yesterday and I express my concerns to her as to the fact that the numbers seem to say that her plagio has regressed by 3mm while in fact I was hoping they would be at 0mm.  We also talk about her Cephalic Index (CI) although that one didn’t get worse.  She honestly says that she is not apt or qualified to read the scans but that “Tim” (I forgot his last name) who is their tech guy in Arizona has asked her to go ahead and do a mid DSi of Maysa’s head so he can analyze the data better and comment or act upon it.  This is the first time they do a mid DSi so I do feel a little weird about it, but at the same time I appreciate how they are listening to my concerns and going the extra step to help address them.

I need to know that I (and everyone else involved) is doing everything possible to help my little Maysa.  Am I a mother or what???  Talking about being a mother, Amber’s daughter also wore a DOC band for a little while so we had a little chat about the fact that she still sees the imperfections in her head shape and that I will always see them in Maysa and others as well.  She just wishes that her daughter had as much hair as Maysa.  I totally understand that at this point, they can only help and not fix and that sooner or later, I’ll have to come to terms with it all.  I know that, but we have 5.5 weeks left in the band.  Let’s make the best of it! 

I probably won’t hear from Amber or Tim until early next week.  How many more gray hair do you think before then?  Of course, I will keep you posted!

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Week 9 in DOC band 2

Posted by mymaysa on March 30, 2009

We are starting our 9th week in our second band.  Once again, Amber shaved off a little more foam off of Maysa’s helmet.  You go girl!!!  She is growing like a weed and walking so fast now, I think she’ll start running tomorrow.  It’s like Spring has sprung.  I am so happy for her.  Her head is really looking round now and she has been such a trooper through it all, even when things looked glum. 

7 weeks left in the band…  We see Amber in another two weeks.  I see the light at the end of the tunnel.

Maysa 14.5 months - week 9 in DOC band 2

Maysa 14.5 months - week 9 in DOC band 2

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The “First” Place

Posted by mymaysa on March 6, 2009

No comment.  Just my own opinion and a picture that speaks for itself.

passivehelmet

Maysa in her passive helmet

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