Maysa's Blog

Our journey through plagiocephaly and brachycephaly

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…

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Back from the Eye Doctor…

Posted by mymaysa on August 4, 2011

I haven’t posted in a long time and I need to upload a few pictures of Maysa now who just turned 3.5, but for now, I’ll just give an update on our visit to the eye doctor today.

It was short and sweet.  Maysa’s vision is still great and while she still exhibits signs of exotropia, she seems to be more aware of it and as a result, seems to think about it first.  I cannot say that it has gotten worse at all.  In fact, it seems to be a tiny bit better.  Again, I am not sure if it is because we fuss at her each time she does it and therefore tries to not do it or if it is because it is getting better on its own.  We go back in 6 months.

I do want to add though that her eye doctor said that a lot of the kids he sees have a history of skull deformation and that it is very possible that Maysa’s exotropia is related to her plagio, though he cannot confirm without looking at the results of CT scan.  I told him that I was a bit concerned about a vertical ridge down Maysa’s forehead that wasn’t there at graduation but that is now a bit prominent.  He wrote a note to her ped…

I’ll write more about what I think that prominent metopic suture is when I can post some pictures of her now.

Posted in exotropia, Maysa, metopic suture, post DOC band, strabismus | Tagged: , , , , | 2 Comments »

Exotropia, not better, not worse…

Posted by mymaysa on January 4, 2011

We had our follow-up appointment yesterday with Maysa’s eye doctor.  She never gave me a hard time getting there.  In fact, she was all happy and excited.  She remembered the “games” he played with her last time and was looking forward to it again.  This girl really cracks me up.  As soon as he said “Hi” to her she replied back with a “Hi Dr. Dorito”, knowing exactly what SHE was saying.  I don’t think he knew though as his name is Dr. Territo…

Ok, so back to the point now.  Dr. Territo played another few “games” with her very similar to the ones he used last time.  He also asked me whether or not I thought things had improved, worsened or remained the same.  From what I can see, Maysa’s eyes still wander off when she is “thinking away” which means when she is thinking about or talking about something that is being pictured in her head.  Her eyes are not focused on anything in particular.  It is all happening in her mind.  The moment you call for her attention, she refocuses right back on you or a specific object.  He saw the same thing as well.

The doctor also said that her vision was perfect and that there was no weakness in neither one of her eye muscles.  He said that the fact that she has the ability to refocus on her own were all good things and didn’t think that she was a candidate for patching.  He also said that she is far from being a candidate for surgery.

Dr. Territo also said that often people with a history of plagiocephaly/brachycephaly exhibit signs of strabismus and that people with this condition often learn to control it as they grow older.  Shame on those who think that it is only cosmetic!

So what are we left with?  Another appointment, 6 months from now, to see how things are progressing.  Maysa will be 3 and a half then.

Posted in exotropia, Maysa, post DOC band, strabismus | Tagged: , , , | 2 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: , , , , , , , , , , , | 7 Comments »

Pride and Joy…

Posted by mymaysa on November 22, 2010

Thinking about it, I feel like Pride and Joy should be my girls’ real given names, though I wouldn’t know which to call Pride and which to call Joy as they both jump in and out of one and into the other all the time.

Soraya and Maysa - Halloween 2010

This post comes in a little late as Halloween has come and gone and Thanksgiving is just around the corner, but I had to wait for my pictures to get in the mail to be able to post. Again this year, we had Jennifer Wells (another plagio Mom and awesome photographer) capture these special moments. This year, the girls were royalty in their handmade velvet gowns trimmed with gold and sequin accents.  They had necklaces, earrings, bracelets, a head piece and even golden shoes to match.  Just plain precious, don’t you agree?

Here is another one of Maysa alone, my favorite one, sitting on the ground, surrounded by Autumn leaves, looking as glorious as a princess.  In pictures like this one, I totally and completely forget about her plagio and brachy.  Isn’t she simply stunning?  I am so thankful to have you in my life, sweet, bright and beautiful you.  I absolutely love you…

Maysa - 2y, 9m - Halloween 2010

 

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Exotropia, Strabismus, and Plagiocephaly

Posted by mymaysa on September 27, 2010

We often read on plagio boards how plagiocephaly and brachycephaly can affect vision among other things. Has anyone noticed such problems in their child? While Maysa’s eye doctor doesn’t seem too alarmed yet, I can’t help but think that her exotropia might in some way be linked to her plagio/brachy history.

For those of you who don’t know what exotropia is, it is a form of strabismus where one or both eyes tend to look outward away from the nose. Maysa does that on occasion, if she is looking away, day dreaming, or thinking about something. Maysa is not one to look at you in the eye if she is talking to you. She will get your attention and once she has it will start talking to you without looking at you. Often, when she does that, she will show signs of exotropia.

I never gave it too much thought. We all day dream, right? And I often see people with the same look on their face (especially during long meetings or while waiting in a waiting room…). However, her daycare provider brought it up to my attention, so I took her to the eye doctor for a consult.

He was able to see what I see and said that she seems to do it more with her left eye over her right one, but that if prompted to, she could easily refocus on one object. He didn’t see any weak nerve or reduced vision. Heck! She could identify pictures that I couldn’t during the examination. He let us go without any treatment (yet) but wants to see her in another 3 or 4 months.

There seems to be some studies out there that link plagiocephaly to strabismus. Anyone out here with a child who is showing signs of it? One I read says that since by 6 months most of babies vision is developed, skull malformation at that age could be a contributor to strabismus.

There will be a follow-up on this one…

Posted in exotropia, post DOC band, strabismus | Tagged: , , , | 8 Comments »

Mommy, it bothers me…

Posted by mymaysa on June 21, 2010

For the first time over the weekend, while Maysa was going down to sleep, tossing and turning as she always does before she finally drops, she actually sat up on her bed and said to me:  “Mommy, can you fix my hair.  It bothers me”.  You guessed it.  I had her hair in a ponytail that wouldn’t budge.  The same ponytail that kept her off her back for about a year now. 

I quickly took it apart and fixed it a little higher on her head.  When I asked her if it was better, she said “Yeah”.  Within 5 to 10 mn, she was fast asleep.  I, however, kept thinking about it.  It is hard to sleep on a tight ponytail.  I say so because I couldn’t.  For about a year post graduation, she’s had to (a little less lately, but still).  Last night, I kept telling myself that her head has kept improving, that while she can’t comfortably sleep on her back because of it, she can still sleep on her tummy and sides and sleep the whole night through.  I guess I wish that it never bothered her really, but her saying so made me feel a bit sad.

So this morning, looking at her head once again, I can’t tell you how happy I am with the way it looks.  She has come a very long way and I still believe in further improvement.  I guess, soon enough she’ll figure out how to loosen that ponytail and it won’t be an issue anymore.

Just sharing along the way.

Posted in post DOC band | 2 Comments »

A Year Ago Today…

Posted by mymaysa on May 26, 2010

So a year ago today, Maysa graduated from her 2nd DOC band and we were once and for all done with bands.  She had to wear four bands total: two kidcaps from ECA, which we believe failed her big time, and two DOC bands from Cranial Technologies which is what we should have picked to begin with.  She wore them from July 2, 2008 till May 26, 2009, almost 11 months…

Well, 12 months later, here is the progress she’s made:
Left Profile:  Here are some comparison pictures where I cropped her pony tail and the background to help focus on the actual shape of her head.  In this one, I feel like the base of the back of her head is where her head has rounded out the most lately.  It has gotten deeper too, there is no doubt.

Top View:  In the following, I am comparing her head from July 2008, when she was in the Kidcap to now and from this past January when she got her last starscan to now.  She’s improved dramatically from July 08 till now, but look, it seems that she’s also improved in the past 4 months!  Click on the pictures to zoom into them and look at the measurements on the rulers.

Front View:  I couldn’t get a good shot of her front view but I found these two pictures pretty comparable.  Her face has gotten longer and as a result, it doesn’ t look as wide.  Also, the reverse pear shape is less noticeable to me.

I couldn’t get a good right profile shot but even from that angle, things look pretty good.  What I was able to get instead is a back right side picture that shows how nice and round her head is there.

I hope that this post gives hope to all parents out there wondering if things can actually get better post banding.  It has for my Maysa.  Thank you Amber and the team at Cranial Tech for helping reshape my little girl’s head.  I will always owe you!

Posted in doc band, eastern cranial affiliates, Pictures, post DOC band | Tagged: , , , , , , , , , , , , , , | 3 Comments »

Beautiful…

Posted by mymaysa on May 13, 2010

… I know.

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

Baby Miguel Part 2…

Posted by mymaysa on May 13, 2010

I just want to share with the world what a well fitting clear helmet should look like.  If you look at some of my earlier posts, and compare it to this one, you’ll notice that I am not only comparing apples to oranges.  I am comparing apples to bananas…

Baby Miguel was back here last week.  His daddy and mommy brought him.  I didn’t know they were coming again and I didn’t have my camera, but we figured out something else using a Flip camera.  So, here is how his helmet looks like on him.  Now, look further down and see how Maysa’s helmet from ECA looked like on her.  Apples and bananas, I tell you!

I enjoyed seeing Baby Miguel again and cannot get over his composure.  He has it all together, it is amazing!  Oh! and yes, his head is reshaping beautifully.  So happy for mom and dad, and Baby Miguel of course…

On a somewhat similar note, a co-worker’s daughter brought in her son yesterday.  They have been suspecting that he has a “flat head” as well but weren’t sure.  I actually got to meet the other little guy and fair enough, he showed textbook characteristics of brachycephaly to me.  I gave mom lots of advice and recommendations as the ped she saw said that it will round out eventually…  I know the story too well, I told her.

Posted in eastern cranial affiliates, Orthomerica, Pictures, Star Cranial Center of Excellence | Tagged: , , , , , , , , | Leave a Comment »

Maysa…

Posted by mymaysa on May 3, 2010

Maysa – Mount Washington – Pittsburgh, PA

Posted in Maysa, Pictures, post DOC band | Tagged: , | 6 Comments »

Baby Miguel…

Posted by mymaysa on April 12, 2010

I saw Baby Miguel on Friday.  His daddy brought him to work.  Miguel is 6 months old and has/had craniosynostosis.  Despite his parents concerns, he went undiagnosed by his pediatricians for a long time.  When his daddy first told me that he was going to have to wear a helmet, the clear type, I got worried.  Then he explained to me that he didn’t have plagio or brachy and that post operation, he would have to wear one of the clear ones from Starcranial in Columbia, MD.  I felt much better then.  I have nothing but good things to say about that place and the people who work there.  I knew that as long as everything went well with the operation, he would be in good hands with Laura Plank and Orthomerica.

So, it’s been just about a month since Miguel got his helmet.  When I saw him on Friday (unexpectedly), I had to hold him and give him an extra special hug.  Of course, after drooling over his cute little face and chubby puffy cheeks, I checked out his helmet.  It was a beautiful helmet.  The shape of that helmet was flawless.  It camed down just barely above his eyebrows.  The contour around his ears WAS traced right around his ears.  It came ALL THE WAY down to the base of his neck.  It was beautifully and perfectly ROUND in the back and just the right width and length.  A perfect ratio!  It also had a few holes and the pads (two at the sideburns and two in the back were extremely soft and clean).

Really, I almost cried I was so happy to see him wearing such a well-fitted helmet.  I haven’t seen Miguel’s latest scan.  Daddy keeps forgetting to swing it by, but from what he told me, he’s made great progress already.  To tell you the truth, when daddy took off the helmet for me to look at, Baby Miguel’s head looked pretty darn good to me!  He needs to grow in width a little more, but considering his age, I have absolutely no doubt that nobody will ever be able to tell that he’s ever had surgery or that he had to wear a helmet (for a year, they are saying).

I’ve never given a really good review about passive helmets, namely Maysa’s passive helmets (kidcaps) from ECA.  However, thumbs up for the one from Starcranial in Columbia, MD.  I wish I could put the two side by side.  It’s like night and day.  Maybe I’ll ask daddy to let me have it for a photo shoot once he’s done with it…

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What’s wrong with these pictures…

Posted by mymaysa on February 25, 2010

A post like this is long over due but I owe it to Amy from the AllAboutPlagio Yahoo group.  So Amy and everybody else who wonders what the kidcap from ECA looked like on my Maysa, look at this and tell me what is wrong with these pictures:

Maysa had a combination of brachy and plagio which means that her head was too wide, not long enough in the back and that it was also asymmetrical.  Maysa’s head was wider right above the ears.  The entire back needed to pop out and the back right side needed to fill out more than the left to reduce her asymmetry.

The pictures below were taken about a week after she got her kidcap:

You are probably wondering about that big space between her left ear and the helmet.  You are also probably wondering about how uneven it looks in the back and about how high it sits on her head looking at the back also.  Doesn’t look like it was made for her does it?

Here is another one taken at two weeks:

Another one at three weeks:

Not much different, huh?

Here are a few other shots taken after one of the sideburns broke (Joe Terpenning had heated it because it was digging into her cheek and the next day it broke).  It took over two weeks for her to get a new one:

Mind you, we expressed our concerns to him but he always assured us that she was making good if not great progress.  As for the big gap above her ear, he said that there was one big bone plate there and that there was no way her head would just grow out in that one spot because on either side her head was covered by the helmet. 

Also, the fact that it was sitting high was no concern to him.  He would say that the more she grew, the more the helmet would go down… 

What a bunch of non-sense!  Shouldn’t that have been my red flag?  Shouldn’t that be everybody’s red flag?  I am not an expert by any means but those pictures speak volume to me now and a competent orthotist should be able to tell you that there is more than one thing wrong with these pictures and act accordingly.

Posted in eastern cranial affiliates, Pictures | Tagged: , , , , , , , | 3 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 »

Hello 80’s…

Posted by mymaysa on January 27, 2010

I can’t wait another day to start blogging about what happened yesterday.  Eight months ago, yesterday, Maysa graduated from her DOC band.  Eight months ago, yesterday, Maysa was 16 months old and not much more could be done about what was remaining of her plagio/brachy.  Eight months ago, yesterday, I was happy with the results but had wished for a little more.  According to Maysa’s last scan from April 2009, her CI was at 93% and we were told not to expect much more…

That was over eight months ago.

Yesterday, Maysa went for one more scan, and what we got on her report this time was far better than what I expected, although if you look at my post The ruler, you’ll notice that I was actually right on the dot as far as what I thought her measurements were.  The bottom line is that at level 3, her CI is now at 88.4%.  That is a drop of 4.6% eight months after treatment in a child that is now 2 years old.  No CST, no other alternative treatment, simply a faithful pony tail at night and no more back to sleep.

I will be posting her reports in another post, but for now, here are her numbers from April 2009 to January 2010:

Circumference: 500.8 to 521.9
Cranial Breadth: 152.7 to 153.8
Cranial Length: 164.2 to 174.1
Diag 1 – Diag 2 = 5.1 to 4.7

Bottom line is that her head barely grew in width, she grew almost 10 mm in length and her plagio improved by 0.4.  We are finally in the 80’s and to tell you the truth, I don’t see any asymmetry anymore, front or back…

Posted in Uncategorized | 3 Comments »

For Petra

Posted by mymaysa on January 23, 2010

Petra asked me some really good questions on Babycenter and the best way for me to answer them is by creating another post.    Here is what she said in her post:

“Leila, Maysa’s head seems to be doing better and better. I am curious as to how you feel about the growth after the helmet came off. Do you feel that her head has grown equally all around or more to the back than her sides? And if so how has she been sleeping since the helmet, sides, stomach or on her back?”

In my previous post, the ruler, I posted a comparison picture of Maysa’s head from the time her plagio/brachy looked at its worse to the way it looks now.  In the one below, the comparison is between the way her head looked two weeks prior to graduating from her 2nd DOC band and now.  Notice that the horizontal rulers on both pictures indicate the same width.  However the vertical rulers indicate that her head has gotten a tidbit longer since May.  Overall, it also has taken on a slightly different shape.  Her ears have moved back.

So in the picture taken in May 09, I come up with a cephalic index of 92%.  In April, her report from STARcranial showed a cephalic index of 93%, so pretty close…

These are my own pictures and my own calculations and might be totally wrong for all I know, but I truly believe that things have slightly improved since the band came off.  I do have to say that she always sleeps with a pony tail right in the back to make it uncomfortable for her to sleep on her back.  So to answer the rest of your question, Maysa, who used to be a back sleeper even while in her DOC bands, only sleeps on her tummy now or on her sides, hardly ever on her back.

Also, while her head is still wider than that of her 4 year old sister, it doesn’t jump at you anymore, nor does the fact that her head is not as round as most little girls her age.

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

The ruler

Posted by mymaysa on January 23, 2010

Like I mentioned before, I don’t take that many CT style pictures of Maysa’s head anymore.  We’ve been done with treatment for months now and honestly, her head looks so good, I don’t think about taking that kind of shots anymore.  Yet, I can’t help but wonder what her measurements would be today.  So, I pulled out one of her worse top view picture from July 08 and compared it to one taken three days ago (January 10).  I then overlayed a ruler on top of each picture (vertical and horizontal) and did some math.  Here are the pictures I’ve been comparing:

So, just so you know, the measurements on those rulers are not accurate.  In other words, in the July picture, her head is really not 92 mm wide, nor is it 104 mm long in the January picture.  What I actually did was try to use those numbers on the rulers to get an approximate calculation of what her cephalic index was back in July 08 and what it is now a year and a half later.

So:
For the July picture, 92 mm / 95 mm = 96.5%
For the January picture, 92 mm / 104 mm = 88.4%

I also want to add that while I came up with a CI of 96.5% for the July picture, it was most likely worse (around 98%)since the middle and bottom back part of her head at that time were further in compared of the top back part of her head.  I also think that the CI I came up with for the January picture is probably closer to 90%.

Either way, look how much longer her head has gotten, thank God and the people at Cranial Tech for making this happen.

Posted in Pictures | Tagged: , , , , | 3 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 »

You are now two! Happy birthday Maysa!

Posted by mymaysa on January 15, 2010

 

My youngest princess just turned two today. While she had a blast at her Gymboree party with a bunch of friends and while she got to blow her two candles and eat cupcakes and pizza with them, today, in the intimacy of our home, we had a fun time playing some fancy dress up before blowing out our official 2 year old candles, again…

We pulled out our favorite princess attire. Cinderella was a hit once again and it’s a good thing we have two of almost everything in this house.  You are beautiful, you are bright, and you are sweet for sure.  Mom and Dad can’t kiss and squeeze you enough and you don’t mind it a bit because as soon as we stop, you say “again”.  We love you so much!

Just about three weeks ago, you started speaking in full sentences and it has been a delight listening to you.  Some of the funny things you’ve been saying…

Teeping Booty = Sleeping Beauty (cracks your sister up)
Macaloli = Guacamole
I lob you Daddy = I love you Daddy
Dooty potty = Dirty Potty
Rite poopy = Rice Crispies (cracks your sister up too)
More nope peeze = More milk please (go figure!)
No like it wahger = I don’t want water
Go Pis = Gold Fish

The list is long but I just thought I ‘d write what’s coming to my mind at the moment.  You also know all of your alphabet, upper and lower case.  You know your numbers up to 10.  You dance all the time and know all of your sister’s ballet moves.  You love books and Elmo…

Here are a few of my favorite pictures taken of you and your sister in your Cinderella dresses around your birthday cake.

Girl Talk

 

A Little Dance

 

A Smile

Singing Happy Birthday

Blowing out Candles with a Little Help from Big Sister

Gorgeous, I know...

If you care to look at a few more pictures, click on the scrapbook slideshow below:

Click to play this Smilebox scrapbook: Maysa is now two!

Create your own scrapbook - Powered by Smilebox
Make a Smilebox scrapbook

Posted in Birthday, Maysa, Pictures | Tagged: , , , , , | 6 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: , , , , , , | 1 Comment »

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 »

ECA Vs. Cranial Tech

Posted by mymaysa on October 7, 2009

So, what happens when you get a cranial helmet meant to correct plagiocephaly and the helmet is not symmetrical.  Well, in our case, we ended up with even more asymmetry after 3.5 months of treatment and over 3.5 cm of growth in head circumference.  Look at the picture below.  On the left is a top view picture of Maysa’s second helmet from ECA.  On the right is a mirror image of that picture.  Do you see the asymmetry?

Maysa's 2nd Helmet ECA

Maysa mainly had brachycephaly but the helmets she wore from ECA were never really that much longer in the back nor were they rounder at the base.  As a matter of fact, they always looked kind of “short” in the back, like they were not covering her head all the way to the bottom.  Look at a comparison between her 2nd helmet from ECA on the left and her 2nd DOC band from Cranial Tech on the right.

ECA Vs DOC Band

Now why didn’t I do something about this from the start?  Well, I trusted too much, had too much faith in the expertise of our orthotist and kept quieting my mommy instincts.  I am still so glad that while Maysa regressed in the helmets from ECA, we were still able to get great correction from the two DOC bands she wore after that.

Posted in Cranial Technologies, doc band, eastern cranial affiliates, Maysa, Pictures | Tagged: , , , , , , , , , , | 6 Comments »

All is good looking…

Posted by mymaysa on September 22, 2009

 We went to the Renaissance Festival in Maryland this weekend and the girls got to see some interesting people in some very interesting costumes.  The jousting was the highlight and so were the elephants.  The girls also got to play in the kids area.  It was hard letting them roam on their own because of all the crowd that was gathered but also because of the uneven grounds, so when we finally found a leveled spot with benches and enough space for them to just walk freely, I pulled out my camera and started taking some pictures.  A woman who was passing by and then sat down looked at Maysa and her sister and then turned to us and said: “What a GOOD LOOKING family you have!  Really, just precious!”  I don’t want to sound shallow or anything but it made me feel so good, especially for Maysa.  She doesn’t just look normal anymore, she just looks great!

maysa_rf_looking_good
Soraya and Maysa

Soraya and Maysa

Daddy, Maysa and the sunglasses

daddy_maysa_rf_glasses1

 

 

Posted in Maysa, Pictures, post DOC band | Tagged: , | 2 Comments »

Left Ear…

Posted by mymaysa on September 13, 2009

Besides the silly grin on both pictures, do you notice how far back Maysa’s left ear has moved in the past 8 months?  Her ears were so flat at birth and then started sticking out once she developed plagio and brachy and now at 20 months of age, it seems to be less obvious.  I don’t know if the right ear is acting the same.  In the recent picture, her hair is covering too much of it, but boy!  She is really looking better and better every day.

maysa-12-to-20-months-left-ear

Posted in Maysa, Pictures, post DOC band | Tagged: , , , | 13 Comments »

Post DOC Band Natural Improvement

Posted by mymaysa on August 25, 2009

I can’t seem to stop posting about the changes that have happened recently in Maysa’s head shape.  Here is another comparison shot.  It is not perfect, I know, it captures her back right profile in an unusual angle but definitely outlines where her head has been growing in the back, don’t you think?  I also want to mention that the picture on the left was taken about a month and a half after she graduated from her 2nd DOC band while the one on the right was taken two and a half months later.

Maysa_back_right_profile_7-13-09_and_8-15-09

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EEG – Normal

Posted by mymaysa on August 19, 2009

Maysa’s tearful EEG came back normal.  That’s the news the pediatric nurse shared with me today.  It’s a good thing as we now know for certain that her “stress moves” are not seizures, however, we are still puzzled at what is triggering them. 

She hasn’t had a real episode in the past few days.  I just wish they could completely go away…

On a completely different and random note, here are some pictures of Maysa at the park:

8-15-09 park1

 

8-15-09 park2

 

8-15-09 park3JPG

Posted in EEG, Maysa, Pictures, post DOC band | Tagged: , | 11 Comments »

Flat to Squarish to Roundovalish, WOW!

Posted by mymaysa on August 18, 2009

Ok, so while I haven’t taken pictures of Maysa’s head in a while I did take some this weekend and have been comparing them to some older ones.  Here is this set below:

Maysa_left_profile_7-27-08_5-09-09_8-15-09 

 

I outlined her head and trimmed her hair in all three pictures so the focus in on her head shape only and not her hair.  In July 2008, her head is obviously really flat and she has a little bit of a conehead.  In May 2009, she is about to graduate from her DOC band and while it is much much improved, it is kind of squarish overall.  This past weekend, August 2009, her head is round.  WOW!  I am amazed!  She is improving on her own.  What a relief!

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

Almost 3 months post DOC band 2

Posted by mymaysa on August 18, 2009

I took some great top and profile pictures of Maysa this week end and though I’d post them for the record.  She is now 19 months old and it’s been almost 3 months since she graduated from her 2nd DOC band.  Here is a top view comparison:

top_view_7-27-08_5-11-09_8-15-09

I feel like her head has filled up in the back, especially the corners.  It has also gotten just a tiny bit longer.  What I really like to look at is how different her head is now from the picture on the left.  That’s what her head looked like about a year ago…

Do you see what I see in the left profile pictures below?  Does her head look rounder AND longer in the back?  I like to believe it does.  Also, I have been putting her to sleep in her crib with her hair combed in a pony tail right in the middle back where her head needs to grow so she would get “uncomfortable” and sleep only on her sides.  If you are reading and have or had at one point long hair, you know what I mean.  So far, so good.  Every time I check on her at night, she is sleeping on her sides, never directly on her back.

Maysa_left_profile_7-13-09_8-15-09

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

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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18 months old today!

Posted by mymaysa on July 15, 2009

I took Maysa to her 18 months check up this morning.  She was as happy as happy can be until the shots that is.  It looks like she is doing great.  Her ped didn’t mention one thing about her plagio/brachy and neither did I.  Instead we focused on what we call her “stress moves”.  In a much earlier post, I had written about how Maysa gets tense, crosses her legs at the ankle, brings her arms close to her chest, and gets stiff.  She also breathes hard when she does that.  If you let her, she’ll do it for 15 minutes or more.  I don’t really know as we usually get her out of it after a few minutes.  It concerns me quite a bit.  She has been acting like this since she was about 4 months old.  While there are times when we think it’s a thing of the past, it always seems to come back.  The ped gave us a referral for an EEG.  She wants to rule out the possibility that she is having seizures…

On the charts, she is between 98 and 99% for her head, height and weight measurements.  We were told to cut down on the milk and the portions of food!  That might be hard.

Not much else besides this picture below and the fact that I am enjoying my time off with her very very much!

maysa_18_months_old

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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

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I think we just missed one…

Posted by mymaysa on July 6, 2009

It’s been over a month since Maysa graduated from her DOC band but since that time, I feel like she has gone through one big growth spurt that we just missed out of the band.  Her sandals don’t fit anymore.  We’ve had to buy her new ones.  Her dresses are getting shorter, her tee-shirts are getting tighter and she has gained 2 or 3 pounds in the past month.  Needless to say that her head has also grown.  At least, that’s the way I feel, and it seemed to have gotten wider as well.  I am starting to see where things don’t look right all over again and last night, I cut her hair up front to give her bangs in hopes to cover the width in her forehead.  She’ll always be cute, but I don’t think that she is meant to have bangs, not with hair that’s so curly.  Thank God that her hair is still long enough to be tighed up at the top of her head.

Here are a few pictures of her:

In this one, she is giggling while her sister is being silly with her.  I wish I had videotaped this moment.  Her little laughs were priceless.

dsc_2695

In this next one, after agreeing with me that Mommy did an awful job trimming that hair, you’ll probably notice that she is sitting on the toilet stool.  Yes, she always asks to sit on the potty to go “pee-pee”.  Then, as soon as she sits, she asks for some toilet paper to wipe her buttocks.  Needless to say that, despite the serious look, there hasn’t been any “pee-pee” yet IN the potty.  It’s a start though, and I’ll take it!

dsc_2690

 

I just found this other picture of her taken last week at Sesame Place.  It’s an awesome place for younger kids, by the way.  Do you see what I mean by “my baby has gotten bigger all of a sudden!”  She is not even a year and a half yet in this one!

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

Two weeks later…

Posted by mymaysa on June 19, 2009

Happy to be band free and round headed again!

6-14-09

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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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Maysa’s Right Profile

Posted by mymaysa on May 28, 2009

From her first evaluation by Cranial Tech to her graduation day…

6 10 12 5 r profile wo pony tail

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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

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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

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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!

Posted in Cranial Technologies, doc band, Maysa, Orthomerica | Tagged: , , , , , , , , , , , , , , | 2 Comments »

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

This content is password protected. To view it please enter your password below:

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The Update

Posted by mymaysa on April 24, 2009

When Tim emailed me his report on Maysa’s progress, he also asked me not to post it online for reasons that I choose not disclose.  I have asked him if I could post some of the graphics that he included in it but again he wasn’t in favor of that.  I really wish I could.  I have been extremely happy with Maysa’s progress since she’s been in her DOC bands and I owe Cranial Technologies so much.  They have turned things around for my daughter and I am forever grateful to them.  This is why I cannot post his report.

In my next entry, I will be posting the report but it will be password protected.  I will share it with family members and close friends.  Maybe, someday, when this type of information is readily available to all CT patients I’ll be able to make it public to all.

Please, forgive me.

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Tim’s report

Posted by mymaysa on April 22, 2009

I haven’t forgotten to post about Tim’s report.  It was very informative and allowed me to view things from many different angles and perspectives.  I will post more, later, in an update.

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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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