Maysa's Blog

Our journey through plagiocephaly and brachycephaly

Archive for the ‘post DOC band’ Category

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: , , , , | 5 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 »

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

 

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

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: , , , , , , , , , , , , , , | 4 Comments »

Beautiful…

Posted by mymaysa on May 13, 2010

… I know.

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

Maysa…

Posted by mymaysa on May 3, 2010

Maysa – Mount Washington – Pittsburgh, PA

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

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: , , , , | 4 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 »

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 »

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

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

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

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

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 »

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.

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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!

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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 »