Maysa's Blog

Our journey through plagiocephaly and brachycephaly

Archive for April, 2009

Thanks, Melanie…

Posted by mymaysa on April 29, 2009

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

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

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

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

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Week 13 in DOC band 2

Posted by mymaysa on April 27, 2009

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

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

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

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

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

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

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

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

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Protected: The Mid Treatment DSi Report from Tim

Posted by mymaysa on April 24, 2009

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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Some recent pics

Posted by mymaysa on April 8, 2009

Here are some pictures taken last week around dinner time:

Dinner, please!

Dinner, please!

Yum

Yum

Glup

Glup

Ahhh!

Ahhh!

 In this one, I am actually getting upset because she is splashing water all over the bathroom and at the camera while I am trying to take pictures of her.  SHE, on the other hand, thinks it’s the funniest trick she could pull on me.  Look at her smirk!

Smirk

Smirk

 

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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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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.

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How did that happen?

Posted by mymaysa on April 1, 2009

I am still puzzled over this.  This morning, Maysa was up first, so I got her ready first.  She was in such a good mood this morning, singing, dancing, babbling…  Anyway, after changing her from head to toe, I put the DOC band back on her head and put her in her crib while I go and get her sister ready for school.  She has the music on and she usually likes looking at herself dancing in front of the mirror while standing in her crib.  Well, after maybe 5 or 10 mn, I go back in to check on her and she is holding her band in her hand and waving it at me!  The velcro is still closed all the way and I am sure that there is no way she could have opened it.  I know that she sometimes pulls down at it to the point where the front of it covers her eyes but for her to pull it completely off! 

How did that happen?

*Update*

After talking to Amber, she reassured me by saying that sometimes, as they get older and stronger, babies manage to take the band off without necessarily opening the velcro.  She said that she must have pulled at it really hard because her holding points were still holding tight.  She also said that she’s had parents who would find the band laying besides their sleeping baby in morning when they went to wake them up.  I am not worried.  She hasn’t done it again, so far!

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