Maysa's Blog

Our journey through plagiocephaly and brachycephaly

Posts Tagged ‘Amber’

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 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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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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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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Week 11 in DOC band 2

Posted by mymaysa on April 13, 2009

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

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

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Mid DSi

Posted by mymaysa on April 8, 2009

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

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

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

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