Feeding Tube Awareness

I am a little late but last week was Feeding Tube Awareness Week! 

It was Feb. 7th-13th

Abigail came home from the NICU with a feeding tube and required several feeds throughout the day. 

If we had to go to a doctors appointment, then the feeding pump and equipment came too. 

Dan and I had to learn all about working a feeding tube pump and aspirating the tube. We basically became like nurses.

 I can remember how nervous we were the first night home from the NICU. We were left to set and operate the pump all by ourselves and boy were we scared, but like everything else we figured it out. It's crazy all that we have learned on this preemie journey. 

Abigail had her tube for about a year so she could gain weight and grow. It was a hard choice deciding the feeding tube was right for Abby, but it truly was the best choice. 

Feeding Tube awareness week is designed to bring awareness to the feeding tube and all the various reasons a feeding tube might be needed. You can check out more info at: Feedingtubeawareness.com 

Happy Homecoming Abby- 3 years later

February 6th marks the 3 year anniversary of Abigail coming home from the NICU. It was a special day, but also a terrifying one. 

Abigail came home on oxygen full time and she also had a feeding tube. I can remember how scared I was the first night she was home. I was so nervous I would mess up one of her medications or I wouldn’t know how to work her feeding tube, but it all worked out in the end. 

Today she is making great progress and her doctors are very happy with her. Abigail loves to dance and look at books. 

I am so happy she is doing so well. Due has come a very long way!! Happy Anniversary Abigail! We love you.

8 Clinical Signs of 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