Happy New Year Everybody!!

Happy New Year everybody. I stayed awake until about 11:00 pm at my Gigi and Pappys house. It was lots of fun. Mommy and Daddy let me have my CRO off all day today and Christmas Day too. I liked that of course, but I really have taken to it. The CRO is really a part of me now. I almost get more upset when it is off than when it is on.

Its already been 8 weeks I've been wearing my STARband!

It’s been one and a half months since I’ve been wearing my CRO now. We had a follow up appointment with my orthotist today and he made some more adjustments to the CRO to make sure it is working. He took some more measurements today, but stressed to us that the measurements aren’t as important as the condition of my head. I never seem to sit still while he is trying to measure me, so that makes it tough. He did mention, however, that after less than two months, that my head is looking better already. Here are the measurements:

Circumference 17 5/8 inches

Width 4 5/8 inches

Length 6 ¼ inches

Right F to Left R 6 inches

Left F to Right R 5 7/8 inches

**my diagonal difference is only 1/8 of an inch now instead of ¼ of an inch.

Daddy finalized our Partnership with Orthomerica Today!!

Daddy finalized our partnership with Blake Norquist at Orthomerica today. With their help, we will be able to provide up to 12 CRO per year to families that cannot otherwise afford them. What a great day. Its hard to believe we have come so far in such a short time. Daddy has been working on the website and is looking forward to helping any way that we can.

Mommy and Daddy decided to start Alexandra's P.H.A.T.E.

Mommy and Daddy decided today to create a 501(c) 3 organization to assist families who are affected by Torticollis, Plagiocephaly and Cranial Remolding Orthoses (helmets). Daddy came up with a great name. It will be called Alexandra’s P.H.A.T.E. The PHATE part stands for Plagiocephaly, Helmets And Torticollis Education. He is so smart. He is even going to start a website and try to get Orthomerica to pitch in and donate CROs to families that cannot otherwise afford them. Here I am only 8 months old and I already have a foundation named after me. How amazing!

PT again today and helmet doesn't even phase me anymore!

I am still having physical therapy weekly and am making progress every time. I am able to sit much longer by myself now. My range of motion to the left has increased to about 75%, which is a far cry from where I started. I am beginning to get on my hands and knees and think about crawling, but I am not quite there yet. Life is tough for Mommy and Daddy right now. When we go out in public we get a lot of stares. Of course, I don’t notice because all I do is smile and have a good old time. However, they recognize that people stare a lot at us. People just don’t seem to understand that I am just a baby girl. Look past my helmet and see me for what I am. Please do not turn away or avoid me because of it. Mommy wonders if she did the right thing by choosing to make me wear my CRO. Hopefully this will all be worth it in the long run. It is much harder on her than it is on me.

First follow up visit with Orthotist today about CRO!

Today was our first follow-up / adjustment visit at the Orthotist’s office. The CRO is really leaving a red mark on my right forehead, so the orthotist shaved some of the foam out to try and help. They are always very nice and good to me. We were in and out pretty quick. I adjusted pretty well to the CRO. Mommy and Daddy followed the schedule and I am now wearing it 23 hours per day. I sleep fine and seem to not even realize it is there. I think it affects my parents more than me. Everywhere we go now people are staring at me, wondering “Oh my, I wonder what is wrong with that beautiful baby?” I’m just fine folks. Please try to see past the helmet and don’t prejudge me because of it. After our appointment, we went to Target to get letters to spell my name on my CRO. Maybe that way, people would realize, I’m just a baby girl named Alexandra. Not a baby girl that wears a helmet that they have to avoid!

Here are some more pictures from my first day.

These pictures are of me to show my Plagiocephaly a bit better to the naked eye. Please notice in the left picture that my cheek and forehead on the affected side are "bossed" or sticking out a bit. Also notice, the right-rear of my head is significantly flatter. Hence, My Plagio! It is going to be tough to wear that helmet 23 hours a day. Last night was tough enough. Hopefully I will get used to it pretty quick!

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.

Physical Therapy again today!

Physical therapy went well today. Alot more of the usual, but I am getting much better range of motion with my neck. The PT showed mommy and daddy how to play with me in a way that would stretch me better. I jumped around in my jumparoo today too. I was able to turn my head to 85 degrees on my back and I kept my head at midline for about at minute. I was encouraged to reach overhead for toys with my left hand while sitting to focus on my muscle.

Plagiocephaly? Whats Plagiocephaly?

went to the pediatrician today for my six month check up. I weigh 20 pounds and am 27" tall. How exciting. Mommy and Daddy really never see me grow, but I get bigger and bigger every visit. While at the pediatrician it was mentioned again about my ear and head on the right side. She took another look and decided that we better make an appointment to see a neurosurgeon at Children's Hospital about Plagiocephaly. The office gave us a prescription to go to Children's Hospital to visit with Dr. Stephanie Greene on 10/8/2009. Mommy and Daddy called my insurance to make sure and get a referral. They did!

Physical Therapy session #3 today.

We are set up to do this weekly and I am getting more used to my stretches. We did a bunch of stretches, rolling, playing, etc. today.I was able to turn my head to the left 85 degrees and 10 degrees right tilt while on my back. See it is harder for me to turn left and tilt right because of my torticollis on the left side.

Session two of Torticollis PT

Today was session two of my physical therapy. My therapist saw me for about an hour just like my last visit. We did lots of stretching today. Not only my neck, but my hips too. I got to enjoy some tummy time as well which I really like. I was able to bring my head towards midline on my own today while lying on my back, and I turned my head to the left 75-80 degrees. The therapist told mommy and daddy to help me roll to both sides and to make me move by placing toys further away from me during tummy time.

First Physical Therapy session for Torticollis

I had my first session with my physical therapist this morning. We did all kind of fun things. She showed mommy and daddy how to stretch my neck. I have torticollis of the left sternomastoid muscle, so I need to stretch to the right. You can see a chart of my particular stretches by clicking here. You can view the stretches for torticollis of the right sternomastoid muscle here. These stretches are to be done daily at changing time. We really got to know each other today and I am looking forward to getting better. I was able to turn my head left to 60 degrees on my back and to 30 degrees while sitting. These numbers will be important to chart my progress.

We received my MDE report today.

Mommy and Daddy received my MDE report today. It is a very long report and showed that I was doing very well in my development. However, the therapists did agree that I should start physical therapy for my torticollis. The moderators of the test gave us a good list of Providers that work with early intervention in our area. You can click on the links that follow:

Early Intervention Specialist (EIS)

1-877-EIS-5711

Pediatric Therapy Professionals, Inc.

724-656-8814

The Early Learning Institute (TELI)

412-884-4262

ACHIEVA

1-888-272-7299

We were paired with EIS with therapy sessions to take place weekly starting on 9/1/2009. I look forward to meeting my therapist. The moderator told Mommy and Daddy that the therapist would do evaluations weekly to chart my progress.

Positive Steps Therapy visited today!

The PA early Intervention team arrived today for my MDE. Positive Steps Therapy, LLC was assigned to do the MDE. You can visit their website by clicking here or call them at 724-444-5333. They were here for quite some time. It was very thorough. They checked my hearing, vision, speaking, physical movement and many, many other things. What a morning. I was glad to get my bottle and take a nap when they left. Mommy and Daddy had to sign more forms and were given some information. Also, we were told we would receive our complete Evaluation Report by 8/26/2009. (Again, picture at almost 5 months really show tilt to left)

Alliance for Infants and Toddlers visited today!

The Alliance for infants and toddlers visited our house today. Eli, my big brother, black lab was not real happy. Mommy had to lock him in my room because he is a kisser. The Early Intervention Service Coordinator gave us a support plan. They are going to assist me with my Torticollis. The PA early intervention Office of Child Development and Early Learning will give me a multidisciplinary evaluation (MDE) on 8/12/2009 to determine eligibility, the need for supports and make recommendations that can assist me to develop, learn and grow. Mommy and Daddy were required to fill out and sign some forms. You can view the Early Intervention Service Coordination Support Plan and Parent's Rights Agreements here.

Four-month Check up!!

I went to the peditrician today for my 4-month check up. I weigh 16 lbs. 6 oz. and am 25 inches long. I put on 5.5 lbs and grew 2.5 inches in two months. Wow! Mommy and Daddy were still concerned about my head and ear today, and the Peditrician took a closer look. She said, "it looks as though I might have Torticollis." Torticollis? "A tightening of the muscle in one side of the neck", she said. The office gave us the number for an organization called The Alliance for infants and toddlers, 412-885-6000. (www.afit.org) They stressed that this organization provides physical therapy and early intervention for infants with torticollis. Daddy called as soon as we arrived home and made an appointment for an initial home visit on 7/30/2009.

Two-month checkup today at peditrician

I went to the pediatrician today for my 2-month check up. I weigh 11 pounds and am 22.5 inches long. I am really growing fast. Mommy and Daddy told the peditrician that I always seem to look to the right, and my right ear and right-side of my head appear to be getting flattened out. She told them to try and put me to sleep with my head facing the other way. The ear and everything will fix itself in time. That is normal in babies. That isn't going to be too easy since I really move my head while I'm sleeping. Even if I start out facing the left, I always end up facing to the right. We will see how it goes. (See my tilt to the left and turn to right in picture)

I met Mommy and Daddy today!

Its early in the morning, about 2:00 a.m. and Daddy just called the nurse to the room because Mommy wasn't feeling quite right. The nurse did a quick test and determined that Mommys water broke. The nurse told them they were going to have a baby today. Looks like I will be getting to see the outside world sooner than I thought. My original due date was 4/15/2009. At 7:44 a.m., the exact moment that Spring began, I was born via c-section. It took no time at all, and before I knew it, Mommy and Daddy heard me cry for the first time. I weigh 7 lbs. 9 oz. and am 19.5 inches long. What an exciting day!!

Alexandra's Story Beings today

Mommy had a routine checkup today. They did a sonogram as they had been every couple of weeks because Mommy had a miscarriage last time around and I was breech for quite some time. During the sonogram the technician noted (for the physician) that Mommy's amniotic fluid had lessened by half its previous level. The physician told Mommy and Daddy to go to Labor and Delivery at the hospital to make sure all was well. When they hooked Mommy up to the machine my little heart was going pitter-patter just like it should have been. However, the doctors were concerened about the low fluid level. Mommy was admitted and the medical team was going to give her fluids to try and get the amniotic levels back to normal. (Note: Mommy's amniotic level was always on the lower side of normal since day one.)