I saw this link up on Kelly's Korner Blog and I just felt compelled to give a brief synopsis of Cohen's story just to help connect with another mother/parent who might can relate or use any of Cohen's interventions in their own situations.
Cohen was born October 2008 after 7 weeks of on and off again bedrest due to preterm labor. She aspirated after delivery and was in NICU less than 24 hours but other than that was deemed to be a very healthy baby. We brought her home 2 days later and felt like we were the luckiest parents alive.......Cohen slept 7 hours straight from night 2 on. She very rarely woke up, and if she did it was because she was wet, not really hungry but we fed her because we knew we should. We were also lucky in the diapering area also, she never went!! At 2 weeks old, her big brother brought home a present from school, RSV!! It landed both of them in the hospital for almost 3 weeks. She bounced back well.
Like any parents, we took hundreds of pictures of our baby girl and after showing them to many friends and family, they always commented how cute it was that her tongue was sticking out in every picture. Hmmmm, should we be worried? At 4 months old, we also noticed that Cohen tilted her head a certain way. The dx: Torticollis, treated and resolved by a few months of Physical Therapy. Also at that time we noticed she still wasn't smiling. But baby #2 I tried not to worry and wish her to "grow up" any faster than she did. Finally, a few smiles came around after she was 5 months old. At her 6 month check up, it was noted that she was very small for her age, especially in length. The dr also inquired about her tongue, "Did it always stick out?"
After having a few tests ran, it was determined that Cohen had Hypothyroidism. No biggie, I have hypoT, right? Well, in kids it is completely different. It pretty much controls the whole cognitive development of the brain (this is why it became mandatory in the 1980's to test all babies at birth due to undiagnosed children often were labeled "mentally retarded"). Cohen was tested at birth........right? After months of trying to find out the answer, we think she was but the test results only state "Normal" with no actual numeric value. Anyway, we start her on Synthroid to regulate her thyroid and began seeing our beloved Endocrinologist. We read every article or journal we could to help explain our diagnosis and our prognosis. I will not lie, we were really devastated that she might not be "normal", not for our sake, but for hers. I did not want her to go through any turmoils from her delays. From what we read and were explained by many drs, it would take at least 6 months for her to regulate and then at that time we could determine how far behind she really was.
A few more months passed and I really began to get concerned about her eating and oral motor skills. Her tongue got in the way of everything! The drs said it might take 2 years for her tongue size to regulate. Still, she never babbled or laughed.........No sounds. We already saw an ENT for tubes but he said she was fine. After she was 16 months old our ped decided she needed to be tested by another dr. At 18months old, after ABR (hearing test done by brain activity under sedation) it was determined that Cohen was hearing impaired and would need hearing aids. That same month, we also found out that Cohen was Growth Hormone Deficient (she was 27" tall and weighed 17lbs). To say we were overwhelmed would be an understatement. Luckily, we were referred to a great school in Jackson, Magnolia Speech School. The staff explained everything to us and educated us and our family to a new situation. Cohen also began daily injections to help her grow. We felt we were given a new diagnosis every time we saw a dr. Things began to fall into a good routine when we began her new school and were given daily notes on her progress. After 4 months,(December 2010), Cohen was still struggling verbally. After meeting with her speech therapist and her neurologist, it was determined that Cohen also had Oral Motor Apraxia. Basically, when she voluntarily wanted to do things with her mouth she became very uncoordinated. The signal from her brain got jumbled up. Luckily, Magnolia specializes in this communication disorder and we were already in the best place. This semester she has had a few new strategies put in place to optimize her speech.
Cohen is a very energetic, unstoppable 2 year old! When you see her, besides her small size and cute "little ears", you would not know a thing was wrong with her. She is catching up quickly with her peers in cognitive levels and physical capabilities. Her only category that is behind is verbal communication and we are hoping with her curriculum and determination that will also be a goall that can be surpassed. We feel very blessed to be chosen to be parents to Cohen. We have been given so many opportunities to meet others and she has taught us so much. Like I said earlier, this is a very BRIEF synopsis of the last 2 1/2 years. You can read back to older posts that give great detail, symptoms and diagnosis as they unraveled.
