Little Emily (Plagiocephaly and Torticollis): May 2012

Little Emily Sophia
(My Helmet Baby)

Born October 7, 2011

Something isnt right..

There are days a mommy feels so helpless and needs help with the kids. Well, today was that day. Both my girls where tired and crying there little heads off for hours and hours. (My girls where 15months and 3months at the time) I had no clue what to do or how to meet both there needs at the exact same time. So I asked my Mother for help. Once she walked through the door it was all silence in my home. haha. Once my 15 month old (Katarina) was asleep my mother proceeded to play with Little Emily. She was the one who noticed that something just wasnt right with Emily. My mother says, "Have you noticed she isnt turning her head?" My reply, "No. She turns her head." Then we proceed to talk to her and I realize she does not turn her head left at all. I started to worry. Why didnt I notice this before? I kept thinking she might not be able to hear from her left ear. But I was puzzled. Why would it be uncomforable for her when I would try to turn her head. So I made an appointment with my doctor the next day.

Visit to Pediatrician..

Waiting alway seems like the worst part. We waiting in the waiting room for a good 30 minutes before seeing her pediatrician. Finally hearing them yell her name we rushed in and got some answers. Her Pediatrician told us it looked like our baby had Torticollis.

Definition:

Torticollis (cervical dystonia or spasmodic torticollis) is a type of movement disorder in which the muscles controlling the neck cause sustained twisting or frequent jerking.

Pediatrician said she would get ahold of a Physical Therapist to have a look and maybe get her some help with stretching any tight muscles in her neck. She said they would call us in about a week.

Waiting for the Physical Therapist Call..

During the time we were waiting for the call I noticed something else was not quite right. Because she was not turning her head left she was always turned right and her head was starting to look noticably flat on the backside (rightside). So I made another call to her Pediatrician. She gave me a phone number to call a Nurologist to find out if it was anything of real concern.

Finally a call from the Physical Therapist. We got our first In-Home Therapy session Scheduled. We also got a scheduled appointment to go see a Nurologist.

First Physical Therapy Session..

She did really good. It was hard on me, because she cried out in discomfort as they did the stretches. They forced her head to the left and held it for only 30 seconds then pulled her head away from her left shoulder till it leaned on her right shoulder. (This seemed like the worst stretch for my baby girl). Once the stretches ended she was just fine. I was told that her cries where discomfort and not pain. If it were pain the cry would proceed after the stretch was done. She would immediatly stop crying once they let go of the stretch. Knowing this gave me a little comfort, because I knew she was not in pain. We have had 6 sessions total so far. One every two weeks Plus stretches they allow us to do at home with her daily. Progress in this area is showing, but still needs work.

First Nurologist Appointment and Payment..

Scans and measurments of her head were done. Then we were told things didnt look so well and her head measurments did not come back normal. To correct her head shape now at about 4 months old was the best time to start. Being that she still had torticollis wearing a helmet would really help get her head shape fixed while we worked on her neck muscles. She asked us if we would like to make a schedule for a helmet fitting and proceeded to tell us that our insurances did not cover the helmet. Medicaid stopped covering the cost of the helmet January of 2012. Only a month before. We asked about payment plans and where told we could pay half at the fitting and pay the rest when we picked up the helmet 3 days later. The cost $2500. We are not a high income family so to us this is alot.

How we came up with the money..

We decided we would wait till we could come up with the money. It was hard knowing that my baby girl could get her helmet now and get things started, but we just couldnt afford it.

Then we got a call from my Mother. She talked to one of my cousins (Chico Sergio Rodriguez, Bexar County Commisioner) and he wanted to throw us a fundraiser. He offered to pay for 500 pieces of chicken and he had a crew to cook it. All we had to do was sell the plate tickets at $5 each. We also had to make the sides to go with the plates. We had family and friends donate beans, rice, potato salad, jalapenos, cupcakes, sodas, water, bread ect..

We had so many helping hands when the day came. We also had many generous donators. It was amazing to see so many people come together and help my little girl.

PHOTOS OF OUR FUNDRAISER

^^^ They Were all A Blessing and such great help! After the fundraiser was over we had enough for her helmet and scheduled her for a fitting right away. Emily is the little baby in the blue footed pj with her daddy in the last photo, Im in the middle holding our oldest, her big sister Katarina.

Emily Gets Her Helmet!!

The day we picked up her helmet. They tried it on and it was a bit to big, but easily cut it and shaved it down to fit.

Here she is leaving the Nurologist Office in her helmet

That night I realized I had not taken pictures of her head so I decided to take acouple..

^^^ It may not be easy to see in this photo, but the back of her head bulges out more to the left and is alot more flat on the right. This was the best angle I could get of it.

Helmet is hurting my baby?

In the first week we started to see redness. We were told redness was not good and we needed to track and take photos to show the Nurologist. So we came to realize in the first week that her helmet came down to low in the front. It would tilt forward and cover her eyes. The back was also to low. Emily could not wear thick clothes or bibs or she would get red marks on her back. The corners of the helmet in the back where also to long. When she would move her head they would hit and mark her.. Here where some of the photos we took that week.

Adjustments where made and a wedge was added so her helmet would no longer tilt forward. We have not had any issues since. The first week we were so scared she would not sleep well and would not adjust to the helmet. We were wrong. She doesnt even notice it. She seems more comfortable with it on than in the 1 hour we take it off a day while we clean it and she gets her bath.

Itching- Our only issue had been the constant itching she does when we remove the helmet. She will go at her head with her little nails. To comfort her during this time we massage her head for her, bathe her and comb her hair. Sometimes a little cold air from a hair dryer really helps.

Decals and Accessories!

Using decals and accessories to decorate her helmet has just made her oh so much cuter! Velcro is awsmome to add a little bow, Stickers and Decals...

In the photos below. I purchased the decal with Lisa Ingersoll at http://www.facebook.com/media/set/?set=a.337332466292729.103833.100000479354385&type=3#!/pages/Plagiocephaly-Band-Designs/213410388700411

Week 6, Nurologist Appointment!

We had scans done to see her progress. Her progress has shown a great amount of progress. She is now in normal measurments and her head looks really good. There are still noticable spots where the doctors feel they can make a difference and make better. Do a bit better than normal. So we are keeping her helmet on for 3 additional weeks. Today we are on week 7. Only two more weeks and my baby girl graduates from her helmet. Im so excited for her!!!

Week 7..

Emily was doing really good and then decided during one of her bath hours she would scratch her little head. She scratched so hard she broke skin. So Me and her daddy decided we would leave her helmet off for 24 hours till it healed. Luckily it healed pretty quickly. We didnt want to risk it getting infected with the heat we are in right now and how sweaty her head can get. Once it looked better we put her helmet right back on.

She had another Physical Therapy Session today and we were told that she is almost ready to be discharged. She is doing so much better. They were shocked to see her crawling, rolling, and even pulling up. She didnt do any at her last session, which was only 2 weeks earlier. Im so proud of my baby girl. They are going to visit with her one more time at the end of the month and will be discharging her from Physical Therapy.

Week 9.. Helmet Graduation..

So we went in for her last appointment with her Nurologist. Had Last measurements done and things came back with awsome results. She is doing great and finally done.. She graduated from her helmet. To celebrate we are taking her to Build-A-Bear soon and will be getting her a cute little bear with a sweet note inside. The bear will be wearing her helmet for safe keeping. ;)

We still have an appointment we need to set up for with the Physical Therapist soon. She will be done with Physical Therapy then too. Im so happy its all over and done with!

That weekend daddy decided to take the girls out on a trip to see some animals at the Natrual Bridge Caverns Safari..Emily and her big sister Katarina had a blast.. Lost of head pics.. Her head is so round now. :)

and her big sister Katarina..

Also wanted to add.. We finally got some pics with Two of her biggest Donaters..!

Sergio (Chico) Rodriguez Bexar County Commissioner

He donated all the chicken for Emilys fundraiser and had people to cook it..

He is such a busy man we got the pic acouple days before she was getting out of it.. :)

Glenn H.

Family Friend..:) One of our largest donaters

and he sold more plates than I can count for her fundraiser.

So I havent updated in a long while..Today Emily is 9 days from turning 1. My baby is almost a year old. She has grown so much.. at 10 months she started standing un-supported and at 11 months she started full on walking all on her own. We were baby-led weaning since about 6 months and she eats all table foods. Shes such a big girl. She loves to dance and shes so happy and such an observant baby. I love her so much.. Here are some photos of my Little Emily. Her head is still perfectly round. Love! :)