Head Shape Concerns

So Ryan and I have always been a little concerned about Little Sisters' head shape even just a few days old in the NICU. The nurses at discharge didn’t say it was concerning and thought that it would round out as she got older. We brought it up to our Pediatrician in Carrollton and he said the same thing. Although Ryan and I were still concerned we were okay with waiting a little while since she still had a bald spot in the back of her head (meaning she was putting pressure there) and because we were doing are best to position her head straight forward rather than on either side. She always had a preference for dropping her head to one side or the other though and eventually she learned to wiggle around and move the pillows. Now that she is sitting and/or on her belly exclusively she is not putting pressure on the back of her skull anymore. With this said we started noticing her head shape more and more each week. With our concerns growing I asked the pediatrician in Lubbock who agreed that it was not perfect but she still recommended to wait a few more months to see if it would round out on its own.

Well for the last few weeks I spent hours on the computer googleing information and on the phone with people I knew who have children with similar situations or who work in this field. The overwhelming majority of the therapist in Lubbock recommended that I go to Dallas if I was really concerned. The more I read the more I realized that we shouldn’t wait any longer as treatment is best before one year of age. With that I decided to see if we could get an appointment with a company called CRANIAL TECHNOLOGIES in Dallas for the weekend I was planning on coming already to see friends. Luckly they had an opening yesterday for an evaluation. 

I could not have been happier that I came! They took all sorts of measurements and took several photographs from different angles. Then they took more in depth pictures of Little sis’ head that were all used to composite a 3-D image of her skull (with out all her crazy hair). When the OT came in to do the assessment she said all the same things that our OT and PT in Lubbock have said and are working on (YEA!!!! Go ECI thearpists!!). When the evaluation was all said and done it turns out that Ryan and I’s suspicions were correct. Little sis has a moderate to severe case of Plagiocephaly and Scaphocephaly which means that her skull bones are asymmetrical, that one side is flatter than the other, and that her skull is growing too prominently at her forehead and in the back of her skull. There was a ton more that we learned at the eval, but for the most part that is the gist of it. As for treatment, the clinic that we went to uses DOC bands exclusively. This is a helmet made of foam that is custom made to fit each child's head individually so that as they grow their skull has only certain places it can grow. It was projected that Little Sis would need to wear a band for 3-4 months . When we asked the clinician what would happen if we didn’t treat she said that Little Sis’ bones would start to harden about 18 months of age and the sutures in the skull would close about that time then too. So whatever her head shape is at that point would be what her adult skull shape would be, but just larger. With that we chose to move forward and begin treatment immediately.

Friday, they sent off the 3-D rendering to the DOC band company to have Little sis’ helmet made. It should be ready for her first fitting in 10 days so we will come back to Dallas then. Once we are home little Sis will wear her helmet 23 hours a day 7 days a week. She is only allowed to take it off for bath. Then every week to two we will come back to Dallas for check-ups and to have the inside of the helmet adjusted so that Little Sis’ head can keep growing the right direction. This will continue for 4 months or until her head shape is adequate.

Well I know this is a lot of information butI highly encourage you to go to the cranial tech website and read more about diagnosis, evaluations, and treatments. Also there are some amazing before and after photos that will just shock you.



http://www.cranialtech.com/

Food Fanatic

Have we ever mentioned that Little Sis absolutely loves food

Watermellon

Beans and Pasta

and even rice.

 Daddy will be the first to tell you this girls eats some crazy things! 

Grain: Pasta, Rice, Oatmeal, Millet, Wheat Germ, Barley, Cereal, crackers, tortillas

Vegtables: Winter squash, Summer squash, kale, broccoli, brussel sprouts, asparagus, okra, spinach, peas, carrots, green beans, beets,sweet and white potatoes, and probably more Im not thinking about

Fruit: Banana, apple, kiwi, peachers, pears, watermellon, mango, avacados, plums, pineapples,

Dairy: Cheese, yogurt, cottage cheese

Others: Beans, tofu, flax seed, tahini, egg yolks, almond milk, and tons of spices. 

With all these options there is no telling what kind of combinations she might get in a day.  Probably the worse sounding meal was tofu, yogurt, and asparagus all blended together with a slice of bananna.  She seems to love every bit of it though. She never complains about the taste, but she has started to be a little more particular about if it is on a spoon of if she can feed herself. 

 

Day at the Park

We had a great day at the park this week with absolutely beautiful weather!!! Little Sis got to try the swings for the first time and Pockets had a blast showing her around all the equipment. 

Little Sis Talking

This video is a special request from Holly my speech path friend.  Not the best but hopefully you can hear her!!!

Pockets Singing during nap

During nap today Pockets was singing his little heart out.  Here is a video of it. It's not a very good picture, but at least the audio is good.  Also, he probably wouldn't be crazy about me showing his face anyways since he is camera shy...

He is singing a song that we sing regularly at church called "I Will Follow" by Chris Tomlin. This morning when we started singing he looked up at us and commented about how he knew this song.

Here is a music video of the song if you want to listen to it before so that you can understand what he is signing. 
http://www.youtube.com/watch?v=2ODe4sGCKxc

If I say so myself, he is an AMAZING little boy.

More Therapy Updates

Still doing good with therapy.  Every one is so proud including Little Sister herself.

She is looking up more!!!!

She is willing to spend more time on our belly!!!

She is not screaming at just the sight of the excercise ball anymore!!

And she has mastered one of her first goals of reaching for an object by shifting weight to one side, crossing midline to pick up a toy, and then coming back to a seated position!!!!!!! (please ignore the music in the backgroud. It is courtesy of big brother.)

Thanks be to God for all his continued blessings!!!!

Another Snow Day

It honestly must have been the shortest snow day every but last Sunday we got several inches of snow that started after church on Sunday and kept snowing till late in the evening.  As you can ses Ryan and Pockets went for a walk around sunset and there was tons of snow on the ground (probably close to 4 inches).

First thing the next morning Pockets got up and played in the snow.   We used bottles of colored water to draw pictures in the snow and make an obstacle course. 

Within three hours of this picture though every single snowflake was completely melted.  On Monday the temperature got up to 53 degrees by noon.  It made it really hard then to explain to Pocket's that school was closed the whole day becuase of snow not just in the morning when we actually had snow!