Sydney’s premature birth, hyperactivity, exposure to alcohol in the womb, neglect for the first ten months of life, and genetics, all play a part in her physical make-up. She was five and a half pounds at birth, and only sixteen pounds when we brought her home at 11 months. She is eight and a half years old now and still at the bottom of the growth chart, for both height and weight. It baffles me because she eats so much food. She snacks all day long and eats huge meals. She does prefer vegetables and fruit over bread, meat and sweets though. She cannot have much dairy because it hurts her stomach, as she is lactose intolerant.
One of the medications Sydney takes has a side effect that can cause her appetite to be suppressed but I do not see any evidence of a suppressed appetite. She eats now as she did before we began medications. She had a hard time gaining weight before the medications and doesn’t put on weight now either. But, the medication is taking the blame from the doctor that prescribes it. I live in fear of losing the prescription and the 12 hours of calm it gives us a day. As I have blogged about before, the difference in a medicated Sydney and a Sydney off meds is tremendous. She is so much easier to live with and to love when she is not jumping up and down, barking, laughing wildly, knocking things off shelves, and touching everyone/everything in reach. I cannot even describe all the differences Sydney's medication makes in our lives. It helps Sydney to learn, play, and focus, and gives my other children a sibling they can enjoy and a mother with time for them too. (See my earlier blog post entitled "It's a mad, mad world for a better description of Sydney off her medication.)
Sydney has weighed in at 38 pounds for a long time now and her doctor has become so worried about her lack of weight gain that she sent us to a Pediatric Endocrinologist this week. We had Sydney’s hand x-rayed prior to our visit so the Endocrinologist could look at Sydney’s “bone age” with us. He also looked at the genetic testing we had done when she was a toddler while we were with him. The previous tests eliminated some of the tests he would have ordered himself. The visit with this doctor was very educational for us. He ordered a blood draw so he could make sure Sydney’s thyroid was working well and she has enough growth hormone working for her. These things could have been damaged by her exposure to alcohol in the womb.
The Endocrinologist said he purposely does not look at a patient’s actual age before he meets them so he will not be influenced. He likes to guess the age before he knows the age. He guessed Sydney to be about five or six. This is what most people guess when they meet her, based on size and her behavior. He said Sydney’s x-ray showed a five or six year old, as well. If he uses the growth chart for a five and a half year old, Sydney is in the 25th percentile on height and weight instead of in the third percentile. This is sort of encouraging. The Endocrinologist expects to find nothing with the blood tests he is running. He told us to make sure Sydney is getting 1600 calories a day, with 300 of them being minutes before bedtime. Sydney eats constantly but her stomach is small so she eats small portions. Sydney prefers vegetables and fruits so most of her snacking is low calorie. She is very active so she must be burning off all of her daily intake of calories. She is somewhat lactose intolerant so dairy can only be given in small amounts. We have developed a few strategies over the years. Sometimes, I give her dessert before her meal. Sometimes, I put the green beans out of reach and tell her she can have them AFTER she eats a donut. It feels wrong but I force myself to do it. I have been reading labels and trying to buy the higher calorie snacks for Sydney. That is a total reversal of everything I have done for myself and the rest of the family.
A bedtime snack is already part of our routine for Sydney most nights so it is not a problem, but the choice of food is going to become a battle now as I aim for 300 calories. Two nights ago, Sydney wanted a vegetable at bedtime. I gave her an ice cream sandwich instead. Even then we were still not going to meet the goal of 300 calories. Sydney ate a few bites willingly but when I wouldn’t let her abandon it, she cried and it took her a long time to finish, thus delaying bedtime for her. Last night, I gave her a half a peanut butter and jelly sandwich and a piece of cake, with a reward of watermelon for finishing the high calorie foods. That went a little better. My oldest daughter, watching me struggle to get enough calories into Sydney, reminded me that I usually use charts and prizes for changing a challenging behavior. So, today I went to a farm store and got a toy Sydney has been coveting for a while: a semi-truck and cattle trailer for her herd of plastic cows. I took her with me to help pick out the color she liked best. I explained that it will take ten stickers to earn the truck. She will get a sticker every time she eats the bedtime snack I choose to serve with no complaining or crying. It may take her a long time to earn the toy. Although, the reward is a big one and she really wants it, by bedtime the medicines that helps Sydney to stay reasonably calm and control some of her impulses has worn off. She often tries to manipulate us at bedtime and delights in any turmoil she can instigate. After only two nights of me pushing a bedtime snack she is already seeing it as a potential for much drama and turmoil. The drama she can create will probably be more rewarding than the toy. The chaos she can create will be so desirable that she may be tempted to cause problems even when she wants the snack I offer and could easily earn a sticker for eating it nicely. This is who Sydney is and this is how she thinks. This is what alcohol did to her brain. Sometimes she does things she doesn’t even want to do or like to do to get a reaction that she does not even want to get, all because she had a thought, an impulse, and she cannot stop herself from acting on it.
Update: Our first night using the reward stickers began with me reminding Sydney of the expectations. I am trying hard to choose snacks she likes, or at least, does not hate. As I set a bagel covered with strawberry flavored cream cheese in front of her tonight, I saw the beginnings of tears. I set the box containing the truck on the counter beside her plate and reminded her how much fun her cows were going to have riding in that truck. It took her a while but she got the bagel finished and she went to bed without any drama. She is sleeping with the truck (still in its box, of course) and her first sticker is on the chart. Maybe ten days will be all it takes to earn ten stickers and the bedtime snack routine will be instilled by then. I can hope. (If you enjoy reading about Sydney and want to read some of the "interesting" things she does, read my earlier posts entitled "hoarding" and "Sydney-isms.")
See what happens next here: 39 Pounds and Gaining
See what happens next here: 39 Pounds and Gaining