My first day in my STARband!

Well today was the BIG DAY! I had my appointment with the Orthotist to wear my CRO for the first time. I must say, if I could “I do not like it very much!” The orthotist had to make many changes to the CRO to make sure that it fit correctly. Its main objective is to allow my head to grow in spots where it hasn’t and restrict growth where it has too much. In my case, my right forehead is bossed a bit, so that is where the most pressure will be placed. Also, my right rear side of my head is where my Plagiocephaly is, and that area is wide open so that my head can fill in there. Mommy and Daddy were given a strict schedule to follow regarding the “break-in” period. That schedule is: DAY 1—on 4 hours, off 1 hour; DAY 2—on 8 hours, off 1 hour; DAY 3—on 12 hours, off 1 hour; DAY 4—on 16 hours, off 1 hour and finally DAY 5—on 23 hours, off 1 hour. From Day 5 on I am to wear it 23 hours per day. Twenty-three hours per day, that sure seems like a lot. For the best correction, Mommy and Daddy have to be strict in making me wear it. I hope we can do it. It doesn’t seem like it is going to be easy. My measurements for today were:

Circumference 17 ½ inches

Width 4 5/8 inches

Length 6 ¼ inches

Right F to Left R 5 13/16 inches

Left F to Right R 5 9/16 inches

Diagonal Difference ¼ inch

Today was the Day Alexandra's PHATE came to life!

Uh oh! Mommy and Daddy received a denial notice from Health Assurance today. The letter said the Cranial Remolding Orthosis are considered “cosmetic”, and therefore are not covered by the insurance. Mommy and Daddy will have to pay 50% of the cost when we go for my appointment on the 30th. Daddy made some calls today to organizations such as Easter Seals, March of Dimes and the United Way to try to get some assistance. They were stern in saying they do not offer assistance for “that type of thing.” They don’t even seem to know or care what Plagiocephaly is, let alone offer assistance for it. Also, daddy called Orthomerica today to see if they know of any places for assistance? Hmmm! The nice lady that answered the phone said (off the cuff) “I don’t know of anyone that offers assistance, but maybe you should start something like that!” What a simple, life changing statement for our whole family.

Visited the Orthotist today for my STARband helmet.

Visited DeLatorre today and all I can say is "Oye Ve!" (I am not sure what that means), but this had to be my most emotional day ever. We met the orthotist and he measured my head in all different directions. I didn't really want to sit still for that, but I cooperated. (somewhat) Then, as if that wasn't enough, he put material that you make a cast out of on my head. This was to make the impression of my head so that Orthomerica could manufacture my new STARband. This "helmet" is to restrict growth of my head where it is already grown and allow it to grow in spots where it has not. I didn't like the process much, but on a lighter side, I said "Mama" for the first time. The "nice lady" at the front desk told mommy and daddy they would send the claim in to my insurance company to see if it was covered. If not, we would have to pay half the cost up front and make payments on the remaining balance. Mommy and Daddy chose a nice butterfly design for my helmet and were told that I would have to wear it 23 hours a day to get the most correction. Helmet due to arrive on 10/30. Halloween, what a nice costume? Aren't people gonna look at me funny? Stare at me?

Still going strong with PT

Heavens! I have alot going on in my early life. PT again today. Mommy and Daddy discussed the CRO with PT and she mentioned that torticollis and plagiocephaly seem to go hand-in-hand. It stems from infants really favoring one side because of the torticollis. "Since most babies sleep on their backs nowadays, we are seeing more and more cases of this.", she said. I was able to keep my head at midline for a bit longer today and turned my head to the left 70 degrees.

Today was a very, very important day!

My appointment at Children's Hospital with the neurosurgeon was today. She spoke with mommy and daddy about my head and ear. Dr. Greene said that I have Plagiocephaly. Plagiocephaly? You can see an in-depth explanation here. In simple terms, it is a flatness of the head. In my case, and mommy and daddy had trouble noticing, my head was asymmetrical. That means my right ear was pushed forward a bit on my head and my right forehead and cheekbone were bossed (more prevalent). Wow? How did this happen? Since I was already seven months old, repositioning therapy, was a bit overdue. The NS strongly suggested that we get fitted for a Cranial Remolding Orthosis. We were given some pamphlets and flyers regarding these helmets. They are designed to reshape an infants head to normal shape. Daddy asked, "How much do they cost?", and the NS said "Normally between $2000-$4000. Thats alot! In most cases, the NS said, your health insurance will cover it, but not without a fight. How encouraging! She told us that they insurance companies consider the orthosis to be "cosmetic". However, she also mentioned that Plagiocephaly has been linked to TMJ, headaches, migraines and other social issues. Before we left the office, Daddy made an appointment for 10/16 with DeLatorre Orthotics and Prosthetics, Inc. they specialize in STARband manufactured by Orthomerica.

PT again today folks!

I am really liking tummy time more and more. The PT noticed that today too. She had me all over the place today strengthening my tummy muscles and everything. I was able to turn my head to the left 75-80 degrees today and I held midline for about 30 seconds.