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Our Journey Begins - Raising A Special Needs Child

FEBRUARY 08, 2016
About 6 years into my second marriage, my husband and I decided to have a baby.

I already had 3 older children from my first marriage. Since this was my second marriage and my husband had no children of his own and I wanted to give him children.

However, we had an obstacle that we had to overcome. I had a tubal ligation when I was 28 after my 3rd child and it was medically irreversible. We decided to take a chance with IVF to have a baby. After all the initial testing and finding everything was normal we proceeded with the regiment of shots and the stressful emotional ups and downs of going through IVF. We were very surprised and excited to find that of the 3 embryos we implanted, 2 of them made it. 

We were having TWINS!!

During the pregnancy we had several frightening experiences of losing them. I prayed the God would protect my babies and keep them healthy bringing them to full term. I was on bed rest for a total of 19 weeks. I held on with them until I gave birth via C-Section at 36 weeks and 6 days. 

My baby boy was 6 lbs 13 oz and my baby girl was 7 lbs 2 oz. Both were healthy and came out screaming.  We were so happy about our new additions to the family. 

The first 3 months were no doubt a sleepless fog. We had help from family and friends that gave us breaks every so often to allow us time to get at least 5-6 uninterrupted hours of sleep. I still have trouble remembering that year and how we ever made it.

We Started to Notice Differences in the Twins' Development

This year was a turning point in my life I never expected. The path of difficulty I was facing had been put into motion.  Raising young children before, I typically knew what to expect when an infant should be meeting basic milestones. The first few months of the baby’s lives I didn't think much about whether or not they would meet their milestones.

As the twins began to get older I noticed that Pyper, my baby girl was right on target with sitting up, crawling, and had a keen interest in her toys.  Whereas Beckett, my baby boy could not hold his head up well or sit up on his own after 4 months without being propped up by a pillow.

I started taking mental notes of some of the odd behavior he began to exhibit. He screamed during every bath time and could not focus on toys or hold them in his hands. His muscles were very rigid and stiff. He would lie on a changing table for a diaper change and was stiff as a board. 

These small things that most people might overlook, wrenched my maternal instincts and felt that something was very wrong with him. I knew I was right when the pediatrician became concerned at his sixth month well check visit.

And the Plethora of Specialist Appointments Began

During Beckett's sixth month well check the doctor said that he would need to have an occupational therapy evaluation to check for a condition called hypertonia. This is a neurological disorder that causes the muscles in the body to lack tone, which results in weak muscles and muscle spasms that cause them to be rigid and stiff.

To add to the growing list of symptoms, he was diagnosed with amblyopia or lazy eyes. We were sent us to an ophthalmologist at Texas Children's Hospital in Houston and Beckett had to wear a patch on each eye, every other day for 1 year. 

He was also being treated for acute acid reflux and taking prescription medication daily.  

We were also referred to a neurocrainal surgeon to treat the condition called phagiocephaly and torticollis. This is plainly called "flat head syndrome".  He had to wear a custom fitted helmet for approximately 11 months. 

I reported to the doctor the unusual shaking he had when he was presented with a toy that had flashing lights. He had an unusual shaking reaction, which as a precaution the doctor sent us to a neurologist for an evaluation for possible seizures. Due to the neurological and the undiagnosed global delays, the neurologist ordered a CT scan and a one hour EEG Test. 

Good news finally!

No seizures or abnormal electrical impulses coming from the brain. Needless to say, this was just the beginning of all the specialist my son would have to see during the first part of his life. Our frustration was building to try and find answers to why he was having these problems and looking for someone to tell us. In the mean time trying to help him the best was we could. WE began by getting him help through OT at Texas Children's, and eventually through our county ECI program.

Little did we know at the time, this was just the beginning of a life long journey raising a child with special needs.

Stay tuned.

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