Signs Your Child May Have Cerebral Palsy

Since cerebral palsy is most often diagnosed in the first several years of life, when a child is too young to effectively communicate his or her own symptoms. Cerebral palsy is a neurological condition which primarily causes orthopedic impairment. 

Cerebral palsy is caused by a brain injury or brain abnormality that interferes with the brain cells responsible for controlling muscle tone, strength, and coordination. 

 The eight clinical signs of cerebral palsy involve:

 • Muscle Tone

 • Movement Coordination and Control

 • Reflexes

 • Posture

 • Balance

 • Fine Motor Function

 • Gross Motor Function 

• Oral Motor Dysfunction 

 I noticed that Elizabeth had very tight muscle tone and her gross and fine motor function on her left side was different from her right side. I noticed this when she was about 5-6 months old. 

Her doctors at Kennedy Krieger diagnosed her with a neuromotor abnormality at first but after an updated MRI and a visit with her neurosurgeon at Johns Hopkins it was decided that she did have CP. If any parents have any questions about her CP, please feel free to ask. I am happy to discuss what we have been through so far. 

It has been a difficult road and it can be hard to see your child not move and get around like other children, but I am so proud of how far Elizabeth has come. She amazes me every day. It's so important to keep up with physical and occupational therapy. Without the therapy I know she wouldn't be able to do the things she can do now. 

  I found the above info from CerebralPalsy.org #CPorgInformation

The Graham’s Foundation

The Graham’s Foundation is a foundation specifically for preemie parents. It is a non-profit organization founded in 2009 by Jennifer and Nick Hall in memory of their son, Graham.  The foundation supports the parents by providing free care packages during their journey in the NICU and transition home.The foundation's website provides a place for parents to share their stories and find support. 

When my girls were in the hospital my mother requested a care package for my girls from the foundation. The package was great and it let me know that people were thinking about me and I wasn't alone. To any NICU parents out there I really recommend that you visit the website. On the website you can communicate with other NICU/ preemie parents. The website even has cool merchandise you can buy like T-shirts and buttons to support preemies.

If you are not a preemie parent but you are looking for a way to support preemie/NICU parents, you can make a donation directly on the website or you can buy something at their online auction online. All the money they receive helps support preemie parents like me. I am very thankful for all the good work the Graham’s Foundation does.

You can visit their website at http://grahamsfoundation.org/home.html

Merry Christmas!

Merry Christmas from our home to yours!

On this day I am reminded of the Christmas we all spent in the NICU. I feel so blessed for Abigail and Elizabeth's health. With every day they grow smarter, stronger, and more amazing. 

I want to send a special thanks to all the doctors and nurses working today to help others stay healthy. Thanks for all you do. 

Christmas Eve

2 years ago on Christmas Eve, Dan and I were surprised by one of our favorite NICU nurses. She arranged with the respiratory team and the doctors for our family to be together and spend some time together just the four of us. With a portable heart monitor and oxygen, Elizabeth was able to take a visit to Abigail's hospital room. The girls were just a few rooms apart, but it would be the first time that our family would be all together. It was truly the best Christmas gift anyone could have given me. It's so hard to believe that we spent last Christmas in the hospital and today the girls are crawling and laughing. I feel very blessed! 

In this picture I am holding Abigail and Dan is holding Elizabeth. 

I hope everyone has a wonderful holiday. 

If you are a Parent of a child in the NICU this holiday my advice is to try to make the best of it. The truth is it really just stinks, but just focus on how beautiful your baby is and remember its only for the time being. It won't be this way next year. :) 

Cabbage Patch Preemie

Did you know that in 1985  Cabbage Patch Kids actually came out with a preemie doll? 

I recently came across an article about odd toys sold in the 80s. I was truly shocked when I saw this toy and just had to share it with all of you. 

The preemie doll was three inches shorter than the regular Cabbage Patch Kids and came complete with tiny diapers and very little hair. They also smelled like baby powder like the "regular" Cabbage Patch Kids.  

According to the article, The Preemie packaging boxes even listed information from the March of Dimes on the definition of a premature birth, along with details of complications and how to care for a Preemie. I would love to get the chance to see the information that was listed on how to "care for your preemie."

The Preemie Cabbage Patch brand even had accessories like additional preemie clothing you could purchase, sewing patterns to make your own clothes, paper dolls, and even a preemie cake pan. -Seriously a cake pan. Strange right?

This whole marketing idea was truly strange. I'm just glad they decided to stop the idea all together.  

Surgery Take 4

I took Abigail to the surgeon on Tuesday for an office visit. I noticed that her old feeding tube site was starting to leak. Her GI doctor recommended that the surgeon see her because it wasn't usual. 

The surgeon said that the area did need to be repaired and that he would need to do a quick surgery to fix it. 

While we were there, I pointed out a small bump she has above her belly button. My suspicions that it looked odd were correct. Turns out that she has another hernia. This is her third hernia. Poor Abby!

She will also need to have the hernia repaired, so both things will be done on December 15th. 

This will be her fourth surgery and she is only 2. She is such a trooper. 

Please keep her in your prayers.