Monday, October 24, 2011

ZiZi's Story: Twelve to Eighteen Months

The twelve to eighteen month phase of ZiZi's life was a time when we knew there was something wrong but thought we could get her caught up to her peers via intensive therapies. We worked on gross motor milestones and speech milestones. Luckily, her fine motor skills were fantastic so we did not need occupational therapy as well.

Around her twelve month checkup her blood work indicated she was anemic so we added a gentle iron supplement. We put her on a gluten free diet even though her blood testing was negative for celiac disease, since obviously something wasn't quite right with her digestion. I was already eating gluten free so it was an easy change to make and wouldn't hurt her to do it anyway. Her energy was low and it picked up a bit after we switched to the gluten free diet. Unfortunately she continued to drop in height / weight percentiles. By eighteen months she was down to the 3rd percentile in height and less than the 3rd percentile in weight. This from a baby who was born in the 75th percentile for both.

At thirteen months ZiZi was evaluated by Early Intervention and physical therapy started a month later. She started speech therapy around sixteen months of age. At a little younger than a year her first word had been MaMa and she had, at some point, had a few additional sounds like Ba and Da. However, by sixteen months she had regressed to just one sound, "Ba," which was her universal word and the only sound she used. We had taught her sign language starting when she was about six months old but she had learned only three signs. This was a stark contrast to her older sister who had 80 words at 18 months. ZiZi had one sound and three signs.

ZiZi had quite a bit of Early Intervention sponsored therapy. She had one therapy every week, rotating speech therapy and physical therapy. This was less than some kids in Early Intervention but more than any of my friends' babies, none of whom were getting therapies and treatments. She made progress quickly on gross motor skills and was walking by about the time she was sixteen months old. Her communication skills were much slower to develop. We watched hopefully at her progress and assumed all would be fine eventually.

Around the time ZiZi turned fifteen months I sought answers for her small stature and hypotonia. I consulted with a friend of a friend who was a nutritionist in the DC area. She did some muscle testing, reviewed our family medical history and put ZiZi on a Gluten-Free,Casein-Free diet that did include goat / sheep milk products but excluded cow dairy products. She thought ZiZi had some sort of leaky gut and recommended a protein shake, flax oil, and George's aloe juice.

We also continued with weekly cranial sacral therapy. I didn't know what to be more worried about: the money flowing out of the household, the time I spent coordinating appointments for my one-year-old, or the pending concerns that she was still undersized and not talking. Life felt crazy because I traveled two days a week for work and I also needed to coordinate school and social outings for my older daughter, Ani. Thank goodness my mom lives in town or I am not sure I would have made it through this time of my life. Honestly, I can barely remember these months because I was also struggling with a hypothyroid situation of my own. It was an intense time.

By eighteen months ZiZi had caught up on most of her gross motor skills and had therapy once a month to track her progress. Her therapy continued once a month until she was released when she was twenty-one months old. Everyone was thrilled with her progress and we breathed a sigh of relief. Other than working on speech / language issues and figuring out why she wasn't growing we thought things were back to some degree of "normal." Enough that we could even book a nice tenth anniversary vacation and leave the kids for a few days!

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