Maysa's Blog

Our journey through plagiocephaly and brachycephaly

Posts Tagged ‘asymmetry’

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!

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Posted in doc band, eastern cranial affiliates, Pictures, post DOC band | Tagged: , , , , , , , , , , , , , , | 4 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 »

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.

Posted in Cranial Technologies, doc band, Maysa, Orthomerica | Tagged: , , , , , , , , , , , , , , , , , , | 1 Comment »

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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The two reports since the DOC bands

Posted by mymaysa on April 8, 2009

Alright, so here are the two reports I got yesterday. 

The first one shows the comparison between January 5th and April 7th (3 months difference).  Just so you know, Maysa got into her second DOC band on February 2nd.

January 5th to April 7th, 2009

January 5th to April 7th, 2009

 
The second one shows the comparison between October 13th and April 7th (almost 6 months).  Maysa got her first DOC band on October 31st. 

October 13th, 2008 to April 7th, 2009

October 13th, 2008 to April 7th, 2009

 

I have to say that I am very happy with the fact that her width has practically remained the same and that her growth has mainly been in her cranial length.  According to another report, the first passive helmet she was in did nothing to keep her head from getting wider.  The DOC bands did.  Thank you CT team!

Needless to say that after getting these reports yesterday, I contacted Amber who scheduled me in this morning at 8:00 AM.  That’s coming in another post…

Posted in Cranial Technologies, doc band, Maysa, Orthomerica, Pictures, Star Cranial Center of Excellence | Tagged: , , , , , , , , , , , , , , , | 2 Comments »

Plagio Plague

Posted by mymaysa on April 8, 2009

What a pain, what a pain… You’d think that Maysa is my first child, but no.  She is my second and I worry more about her and this plagio plague than about anything around.  At least for now.

Remember how I told you that I was taking her for another scan at Orthomerica today?  Well, I was able to take her yesterday instead (impatient me) and my head has been spinning ever since I got her latest report.

Before I get started on the report, I want to say something about Laura Plank, the orthotist at Orthomerica in Columbia, MD.  Love her a lot.  She is wonderful.  Not only does she do and take her job seriously, she is also extremely caring.  When you talk to her, you know that you are also talking to the “Mom”, not just the specialist, and that means a lot to me since most people don’t quite relate to the struggle we are faced with for the rest of our little ones lives.  She is positive too and will get you to focus on the brighter side of things…  Yet, I am worried and once again ready to battle this curse.

So, back to the reports now.  The last one she got was back on 1/05/09.  Her brachy was at 93.2%.  Her plagio was at 2.1mm.  Yesterday, 4/07/09, her brachy is at 93% (92.99%).  Her plagio at 5.1mm.  What in the world?  I thought I didn’t have to worry about plagio anymore.  I truly don’t get it.  I was expecting her brachy to be closer to 90% and her plagio to be down to 0mm.  She grew 9mm in circumference in 3 months, not much, but I was expecting more…

Laura tells me that her growth is slowing down and that her sutures are probably starting to fuse.  She says that considering her age and the 5.5 weeks left in the band not to expect much more improvement.  This is basically it.

Feel my frustration.  Help me get through this.  I am loosing my sanity!

I’ll be posting the reports in the following post.

Posted in Maysa, Orthomerica, Star Cranial Center of Excellence | Tagged: , , , , , , , , , , , , | 2 Comments »

The three reports:

Posted by mymaysa on January 6, 2009

Alright, I had a minute to scan Maysa’s reports this morning and here they are:

The first one was taken on 6/24/08 during our initial evaluation, when we were still trying to determine what she actually had and if she would benefit from helmet treatment or not.

 STAR Scan June 2008

The second one was taken on 10/13/08 back when I had doubts about how well Maysa’s passive helmet from Eastern Cranial Affiliates was working for her.  I let you be the judge, but in my opinion and looking at the report itself, the helmet didn’t do anything about keeping her head from growing on the sides.  It didn’t correct her plagio at all either.  In fact, Laura Plank from Orthomerica, explained to me that looking at both scans, both her brachy and plagio got worse.

STAR Scan June/October 2008

The third one shows how she’s progressed since she’s been in the DOC band and since we’ve done CST.  Her plagio is now within normal range at 2.1mm and her brachy has gone down from 98.2% to 93.2%.

STAR Scan October 2008/ January 2009

There you have it.  Love the DOC band and love the Starscanner a lot!

Posted in Cranial Technologies, CST Appointments, doc band, Maysa, Orthomerica, Pictures, Star Cranial Center of Excellence | Tagged: , , , , , , , , , , , , , | 1 Comment »

This is how I feel…

Posted by mymaysa on January 6, 2009

As happy as I am to see how Maysa has improved in her band, I can’t help but feel sad deep inside for the time we wasted in her passive helmet and for what I see as not only a lack of improvement but regression as well.  According to her third scan taken yesterday, her plagio has gone down from 8mm to 2.1mm, and her brachy from 98.2% to 93.2%.  She’s only grown about 1cm in circumference between 10/13 and 01/05 but basically her asymmetry is gone.

What am I sad about then? 

Well, I am sad because while in her passive helmet, and according to the numbers on the graph from Orthomerica, she grew 3.5cm in circumference, which is huge, yet her plagio went from 6.4mm to 8mm.  Going by her scan again, her brachy also got worse from 97.9% to 98.2%.  She stayed in that helmet for 3.5 months.  You always hear about such great results in active bands and I can’t help wonder what the results would have been had she been in a DOC band or even a STAR band back when she started treatment at 5.5 months.  Could she have seen perfect correction?  That’s what makes me sad and sick all over again:  regrets, regrets, regrets…

With a cephalic index of 93% Maysa still has brachycephaly (although mild, Laura Plank said) and in my opinion could benefit from another band.  I so want her to get below the 90% somehow.  Why should we stop trying now while things are going so well?  If she’s improved by 5% after nine weeks of treatment, couldn’t we see another 5% of improvement in another band? 

I know that her growth is slowing down but she is not quite 1 year old yet and so many babies start at that age and even later with good results too.  She doesn’t mind the band.  Family is supportive and I could care less what people say or think when they see her in her band, really.

I will be posting her three reports tomorrow once I get them scanned…

Posted in doc band, Maysa, Orthomerica, Star Cranial Center of Excellence | Tagged: , , , , , , , , , , , | Leave a Comment »