Snack Time at the Snack Table
It has been awhile since my last entry so I thought it was time for an update. Cisco is now 2.25 years old. He still uses the Ottoback walker to walk around and belly crawls when not using the walker. He’s gotten a little stronger. Over the past couple weeks he has been bringing his knees in to crawling position but his arms still do not extend. If I go to help he brings his legs to standing for me to help him stand so I thought he was trying to figure out how to get from laying to standing. Then, today, he brought up those legs from belly and swung them around to sit up on his very own with no help at all for the first time ever!
Cisco’s speech continues to be quite delayed but his efforts are increasing. He’s becoming pretty good at imitating musical sounds and other sounds he hears like the cats meow. I really love how he likes to help Big Brother yell for me and has finally figured out he can get me by saying “Ama” instead of just fussing or crying. He has more distinguishable signs such as mom, dad, more, done, play, music, door, light, waving hello, and help. He tries to imitate words. He is babbling more and more. For awhile he was getting very frustrated that I was having trouble understanding his needs, as they’ve gotten more sophisticated, then we started doing speech therapy privately on a weekly basis in April instead of just monthly as we did through our county. It has made a great difference. We used PECS (Picture Exchange) cards for awhile and he started saying “more” right away as it was one of the first cards we used. He understood it right away. We did get away from it though because I couldn’t keep up with all the cards but it seemed to open us up to a new level of communication.
Cisco saw his opto-neurologist this spring for a yearly check in. His doctor was happy with the results of Cisco’s eye surgery for strabismus and felt that there was no longer any reason to see him. He did recommend that we start working with a Ophthalmologist again, which we will. The vision therapist is someone we want to work with in the future but I am finding it isn’t really working for a toddler that doesn’t follow directions.
Cisco’s growth has continued to be slow. He remains below the chart in height and weight. Two throwing up sick episodes this winter, unable to keep food down, didn’t help and we found that at his 2 year appointment he lost 4 ounces in about 6 months. So we went to see an endocrinologist at National Children’s Hospital. We found out that all his numbers were normal except growth hormone. His growth hormone is very low. After talking to the doctor we have decided not to give him growth hormone at present and to re-evaluate at age 6 when they can predict his adult height. She said the only reason to do it for him would be to gain height and the only medical reason she would recommend it right now would be if his blood sugar levels were low as a result of the slow growth which they are not. Unfortunately, I wasn’t very happy with the doctors communication skills or respect for me as an intelligent parent but did learn something important after yet another amazing blood draw by the Children’s staff (the had lavender oil going and a light and water display to calm there patients). The doctor did recommend seeing a gastroenterologist, I think mainly because I kept Cisco wheat-free after discovering without a doubt that it was causing severe Excema for him. Based on the letter she wrote his pediatrician, she was concerned with my determination to keep him wheat and dairy-free (we are trying to introduce cheese). Luckily, Cisco’s pediatrician agrees with me that the low growth hormone explains his issues of small size and we will work with a dietician to increase calories rather then head to a gastroenterologist.
Did I mention I love Cisco’s pediatrician. She always listens and has called us on several occasions after receiving letters from specialists or just to check on Cisco. I don’t always agree with her and she knows that but she is always respectful of me as the parent.
As for the dietician, she works with lots of people that follow a gluten-free diet including herself so her nutritional knowledge is great. Unfortunately, she is not at all comfortable with children and regular toddler behavior much less my toddlers behavior that includes being very uncomfortable with new people. As for her knowledge base, she had some great recommendations recognizing his sensory issues that limit what foods he will tolerate and determination to feed himself. She did evaluate 5 days of his diet and said he is not consuming the calories someone his age should. I started a snacking table in the kitchen at his level for him per her recommendation to offer food more often and am offering snacks in the car. He has really enjoyed his snake table that has at least 3 options at any given time. We have gone from 3 meals and maybe one snack a day to 3 meals and 3 to 4 snacks a day. I have been taking him to the table several times a day and today he actually took himself in his walk to the table to have a bit.
While Cisco qualifies for public preschool, this summer I decided I know him best and can provide the best educational, therapeutic and loving environment for him. We went on a tour of the preschool before deciding. It was overcrowded and overstimulation for me much less a toddler with visual impairment. It also was not set up at all for a child to be in a walker or belly crawling. I also wanted to focus my energies on a medicaid waiver to pay for his many expenses and get an attendant to help a couple times a week while I homeschool his brother (we got the Virginia EDCD Medicaid waiver based on his disability).
