About Little C

About Little C

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Little C is my baby girl. After 4 boys, we were blessed with a surprise, the birth of our fifth baby, and it was a girl. A baby girl who I dreamed about my whole life. My heart was so full. She was perfect and beautiful. I had my handful, and I was happy.

I noticed right away that her head was not as strong as I was used to. She had a lazy latch while nursing. We assumed she was just on the lower end of the “normal” development. We were wrong.

By 9 months, Little C was still unable to sit unsupported. Her head control was not what it should be. We talked to our paediatrician. A referral was put in and at 15 months old, we received the diagnosis that would change our lives. Little C has Global Developmental Delay with Neurological Abnormalities.

What is Global Developmental Delay?

Unfortunately, this diagnosis does not give us answers. Basically, it is a way of saying delays in multiple areas. In our case, Little C is delayed in every area of development. Fine motor, Gross Motor, Speech, Cognitive Development, she is delayed in them all.

After an MRI, genetic testing, and many specialist visits, it is believed that she has something genetically off that is causing the neurons in her brain to not connect. There is a possibility that in time, her brain can build the pathways she needs, but we do not know for sure. She has no ceiling. We do not know what she is capable of. She might grow up to become a fully functioning adult, appearing “Normal.” Things will be harder for her, but we have hope.

Little C’s Challenges She Has Overcome So Far

So far, Little C has needed ankle braces for stability. We were told she would likely always need the extra support. At age 3 Little C began walking, with no ankle supports.

She has had surgery to have tubes in her ears. She had fluid build up that affected her balance and hearing due to small ear channels. Upon healing, we found that the ear canal did not heal properly resulting in the second set of ear tunes and a partial adenoidectomy to allow more air flow. We now are waiting for this to heal.

Little C has had seizures and we have now discovered she has a cyst on the pineal gland in her brain. Doctors are monitoring it, and believe that it will not cause any symptoms, but it is there. We believe she is having migraines and are not sure if it is related to family history, or the cyst.

After several speech therapists with differant opinions, we know can say that Little C has Appraxia.

The Future Challenges

We know that she might need eye surgery to correct eye turns and  level out her eyes as they are not parallel.

She may need more tubes inserted in her ears.

Speech Therapy will be a long road.

She may need treatment for her pineal cyst if it grows.

We are currently waiting on a reassessment of her development, and that could be a game changer.

She Is My Princess

Though it is a challenge, I would not change Little C at all. She is a piece of pure joy to everyone she meets. Every day I am amazed at how she pulls people to her. We say her superpower is making people love her. She is the happiest child I have ever know. The love she brings to our family is indescribable. There are days she makes me crazy, but she is mine.