39 pounds and gaining

This is a follow up to the last post called "Watching Sydney's Weight" so you might want to read that post first. 

Sydney earned her ten stickers in ten days and got her livestock truck a couple of nights ago. She is thrilled and so am I.  She weighed in at 39 pounds last evening. Sydney weighs herself almost every evening after her bedtime snack and comes and tells me what the scales say. Usually she has the numbers mixed up and says something like “eight-three point five” or “thirty eighty ninety-nine.” When Sydney came to me and said she was 39 pounds I doubted her and followed her to the scales. I had been excited we were creeping up past 38 and a half pounds at the beginning of the week. Of course, weight can fluctuate a little so tomorrow we may be back under the 39 mark. However, we have been stuck at 37 and 38 for a long time so anything close to 39 is looking pretty good. The doctor will be pleased if this continues. I believe it is the 300 calorie bedtime snack that is making the difference, just as the doctor said it would. I don’t think we have made our goal of 1600 calories a day, more than twice since our trip to the endocrinologist. THAT is a lot of food for a tiny little stomach to hold. I have made a huge effort to push bread, pasta, meat and desserts and have limited the vegetables and low calorie snacks. It is getting easier for me to say “no” to the request for raw carrots or green beans and hand her a brownie instead. haha

Sydney had a bowl of vegetable soup for lunch today after a week of going without her favorite lunch. She LOVES vegetable soup. She misses her vegetables the way I would miss my Dr. Pepper if I had to cut way back. I have found several high calorie snacks Sydney likes now. Little Debbie’s cakes are at the top of the list, along with pudding cups and pecans. It doesn’t take very many Oreos or peanut m&ms to get to 300 calories either and she loves those. Sydney and I have made a couple of trips to the grocery store in search of new snacks to try. Reading the labels is something I have done for years for myself but I was always looking for lower calorie foods, not higher calorie foods. I know a lot of people who would like to “trade” weight problems with Sydney, and I am one of them.  haha

I may actually be able to retire the 4T shorts at the end of this summer. The 4 slims are getting just a little tight too! I never had a kid wear the same shorts three summers in a row before. Sydney's wearing them all out.  I tried 6 slim jeans on her today. She'll need them for the length and we'll just have to cinch them up really tight. Thank goodness for the adjustable waists in pants these days!   

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It DOES hurt!

I've been up for a whole thirty minutes this morning and I have not stopped smiling. Ironically, my smile is a direct result of Tate's discomfort. Please, if you have not read my previous blog post “Does it hurt?” from April 25, 2012 then take a look.

Tate is an early riser (and that is an understatement.) Many people with autism require little sleep, or perhaps it is just that they struggle with chronic insomnia. Tate is almost always up by 6:00 and sometimes it is 5:00 when I hear him up. Most mornings Shawn is up early too. I am NOT an early riser and that is an understatement. I think 9:00 would be the perfect time to crawl out of bed. Of course, this rarely happens. The past couple of years I can leave Tate in a room unsupervised. Sydney is another story. There is no telling what she will get into or break if left unsupervised. But I did not start this blog post to talk about how much sleep I am getting…..

This morning, Shawn woke me up earlier than I like with the news that Tate’s ear was hurting. I was wide awake instantly with questions. "How do you know?" “Did Tate TELL you that?” TATE TOLD SHAWN THAT HIS EAR WAS HURTING.  This is a HUGE milestone. If you read my earlier blog post “Does it hurt?” or if you know us well, you will know that Tate has had MANY ear infections in his life and he has never complained of pain. He won’t ever tell us when he is hurt or sick. We have to guess. 

The ear pain this morning is from swimmer’s ear, I am certain. We put in an above-ground pool this summer and spend hours in it every day. Sydney has had swimmer’s ear this summer and got drops for it last week. I have been wondering if Tate had any trouble with water in his ears but he wouldn’t talk to me about it when I inquired. Levi and I have been having trouble getting all the water out of our ears sometimes but our ears have not hurt. 

Tate’s favorite thing to do in the pool is flip or somersault. He practiced for days and sometimes will somersault over and over, until I wonder if he is using it as a repetitive behavior to stim. I give him the benefit of the doubt and hope he just loves the fact that he mastered a new skill. I like to use denial sometimes to help me through the day. haha The somersaulting gets water in my ears worse than anything else so I don’t do it much. Tate is doing a lot of really cool things. He loves to go underwater and Shawn and I have marveled about how long he can stay under. I think it is also because he can ignore pain to a degree. I cannot stay under as long as Tate can. He could not go under much until he learned to use a face mask. Levi and I have to use a nose clip or a facemask to swim under water. Tate was not interested in trying on the facemask at the beginning of the summer. Once he decided to try the facemask he wanted to spend all his time under the water. He is having so much fun in the water. Tate has always been big for his age and heavy. This past year he got a lot taller and slimmed up but this summer he has actually started to look skinny. I think all the exercise in the pool has helped. 

In the pool

If you see me around today, note the smile on my face. It is not actually because Tate is hurting, but because Tate acknowledged that he is hurting so someone could help him with it. Maybe this is just a beginning and Tate will be telling us in the future when he hurts or feels sick. I am on cloud nine. 

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Watching Sydney's Weight

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 25^th 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