Appointment to See CranioFacial Specialist on 6/14

Mommy and Daddy aren't overly concerned, but would rather be safe than sorry. I have an appointment to see Dr. Losee at Pittsburgh Childrens on Monday. The team there in the Craniofacial department is going to give me a good once over, being that I had the Plagio and everything. Hopefully all is just fine and dandy.

Hmmm.... I wonder if everthing is ok?

Daddy has been wondering for a couple weeks about my facial assymetry. He made an appointment to see Dr. Greene again this Thursday. Is it just something that wasnt corrected by the helmet or is there something else going on here?

Appt. today at Peditrician and lunch with mommy!

Mommy and I had to go to the peditrician today for a checkup. They wanted me to get some follow up XRays of my head to make sure all is going well since I had the Plagiocephaly. It was okay, sorta uncomfortable, but no big deal. For me being so good, mommy took me to Golden Corral. I just love that place so many veggies and fruits. YUMMY!

Being a baby girl is so difficult sometimes!

One of the nice things about being a baby is--You can fall asleep anywhere and anytime you want. Priceless!

Our Article in the South Hills Record

Click here to visit the South Hills Record and read about Alexandra's PHATE and Christopher's Journey with his new STARband.

It's been a while, but I'm really getting acclimated to my freedom!

Hi EVeryone. I know it has been a week or so since my last post, but I am really getting used to not wearing my helmet anymore. I went with mommy and daddy today to an interview with a local newspaper that is writing a story about our foundation. It was kind of exciting. I got to meet all of Christopher's brothers and sisters. I really like to swing outside and watch my doggy play frisbee. I am telling him to go get it in this picture.

I have graduated from my STARband 4/21/2010

Mommy, Daddy and my Orthotist, Tom, mutually agreed that I was going to graduate from my STARband helmet today. What a great day. Now I can go on being the normal little girl that I was all along. No more stares, questions, glares, chuckles, etc. I am glad I went through it, but I am also glad it is over. 6 months of 23 hours a day therapy.

Special Thanks to:

• Mommy and Daddy
• Orthomerica Inc. / STARband
• Delatorre Orthotics and Prosthetics

and everyone else who has been following my updates. We appreciate your love and support and will continue to do our best with the foundation.

Alexandra 2010

Alexandra has GRADUATED from her STARband!!

Well, for those of you that have been following Alexandra's Story, she has officially GRADUATED from her STARband today. We met with the Orthotist and we mutually agreed that it did its job on Alexandras Plagiio correction. Thanks to everyone that has been supportive during this time. We will continue to do our best to assist families affected by Torticollis Plagiocephaly and CROs through our foundation www.alexandrasphate.org. Many Thanks again!!

I don't think I am going to wear my STARband anymore

Hello, Meet my doggy Eli! He always loves to sit next to my highchair when I eat, just IN CASE I might drop something. I eat just about everything and haven't been pickey at all, like Daddy. I haven't warn my helmet for a couple of days, and think Mommy and Daddy may have graduated me from it. We have an appointment at the Orthotist this week, maybe just for a final measurement. I really enjoy the wind blowing through my hair, Eli licking my face and Mommy and Daddy being able to hold me close.

Alexandras PHATE donates helmet to Pittsburgh Family

Alexandra's PHATE is donating a helmet to a family in our hometown. What a nice day it was today. We got to visit Union Orthotics and Prosthetics and see how the STARscanner works. What amazing technology. It takes a perfect scan of a child's head in 1.5 seconds. I got to meet Christopher and he is going to be getting his STARband very soon. Can't wait to hear his story.

Thanks to Union O & P and Orthomerica for allowing us to help this family in need. If you have any questions about how AlexandrasPHATE can help you. Please visit our website at www.alexandrasphate.org.

Also, we will be starting a blog here for Christopher's family to give you some insight on their Journey. Check back soon.

The first really sunny day of the year. Nice

Mommy took me out to the mall today with Gigi and Pappy. I got to wear my cool shades. Our orthotist told mommy and daddy I can really stop wearing the helmet whenever I want now.

Hopefully sooner than later!

Happy Birthday to Me, Happy Birthday to me!

What a great day. Mommy and Daddy threw a great birthday party for me and I didn't have to wear my helmet all day long. That might have been the best part. Just kidding. I had a great time. I just loved my cozy coupe and my birthday cake. I am still wearing my CRO. My orthotist was able to adjust it so I can wear it for a bit longer. Hopefully another month or so, and I will be done!

Happy St. Patricks Day everybody.

Happy St. Patrick's Day Everbody. I really hope that you enjoy your day. Keep checking back. My story keeps getting better and better.

May be closing in on the end of my CRO therapy.

I had a visit with my Orthotist again today. I am beginning to see more and more redness on my right forehead. There really isn’t much more foam to sand away. I think we are almost to the end of its run. Certainly, I am much closer to the end than the beginning. Even with it on for a short time now, My forehead is getting quite a bit irritated. Mommy and Daddy have been making me wear it less and less. OMG (sorry to drop that on you, but I couldn’t resist) what an improvement though. They can really tell when I’m in the bathtub and my hair is wet. Besides just a little shift forward of my right ear, the change is unbelievable. Thank goodness!

More PT, More PT. I think I can, I think I can!

PT again today and things are moving rapidly now. I have been standing up (leaning on something) for about a week now. It is not out of the ordinary for me to stand and shake my booty to Yo Gabba Gabba for ½ hour or so. Where have the days gone when Mommy and Daddy could just lay me down and know where I would be when they came back? Its very exciting. My head tilt is minimal now, and at times you cannot really tell that I ever had the Torticollis. Its difficult to imagine that I have been through all that I have. I am just thankful for all of the help that I have had from my PT, my Orthotist, my Orthomerica STARband and my Mommy and Daddy. What an amazing first year it has been.

Meeting with Dr. Greene our Neruosurgeon at Children's today!

Mommy and Daddy seemed very nervous on the ride to Children’s Hospital today. Outside of this past week being one of the snowiest in PA history, they weren’t sure what to expect from Dr. Green. Thankfully her feelings about my progress could not have been better. She said, and I quote (although I’m not sure where that came from) “The helmet has certainly done its job!” Those were her exact words. I really didn’t care, because I just wanted to waive and Daddy wanted me to keep giving the touchdown signal. (He taught me that when Mommy wasn’t around) However, Mommy and Daddy couldn’t have been happier. The news couldn’t have been better. As a matter of fact, she mentioned that we really could be close to the end of my time in the helmet. Wow, what great news! Wait, what am I saying? I don’t know any different! This CRO was a part of me for the past four months. Will life be the same without it?

More adjustments, more adjustments. Ughhh!

Back to Delatorre today to get some adjustments and drive the Orthotist crazy while he tries to measure my head. Mommy and Daddy have really noticed the improvement in my shape now. It really seems to be doing the trick. As best he could, the orthotist took some more measurements. They were:

Circumference 18 inches

Width 4 ¾ inches

Length 6 5/16 inches

Right F to Left R 6 ¼ inches

Left F to Right R 6 1/8 inches

**once again, the orthotist stressed that the measurements are far from perfect. He, as well as, Mommy and Daddy have really seen improvement. An appointment was set for 2/17/2010 for me to see my neurosurgeon, Dr. Green. Hopefully she will be pleased with my improvement as well.

I am a crawling machine now!! Look out.

I had physical therapy today and my PT was amazed. Since she saw me last on 1/12 I have started crawling like a freight train. I rarely stop now. Once she got a hold of me, I was able to turn my head to the left almost 80 degrees. Wow, that is almost as good as it gets. This stuff really is working. I must say, I don’t like it all that much, but it is working. I am down to just about a 3-5 degree tilt to left when I’m sitting now. Yippee!!