This is an update from our CaringBridge journal...
Avery's 2nd birthday is just around the corner- only 2 weeks away!! She came down with a cold recently, which took a while to get rid of, and caused her ears to drain quite a bit. Since the cold, her eating has become more of a challenge. Her appetite seems to be coming back, but she is even more hard-headed than before about what she will and won't eat. She also will not eat the things she used to eat on a daily basis. While challenging, I understand that it's just a normal phase, and will pass eventually. In the meantime, PediaSure and vitamins will help us out.
We attended Avery's 6 month endocrinology appointment recently, and were surprised that Avery weighed 22 pounds at 23 months! I thought we'd never see the 20 pound mark! Her doctor seemed happy with her, and decided we'd put off growth hormones until age 3 due to her emotional state. Avery has a very difficult time at any medical appointment. Jake and I are very friendly, and encourage Avery that everything is ok, especially in routine appointments. It doesn't matter what we do, however, because Avery cries through the entire visit, and often says, "bye-bye" and blows the occasional kiss wanting to leave. I thought she'd finally calm down in appointments where they don't do anything to her, but that is not the case. It makes it stressful, and difficult to converse with our physicians. I tell them one day she will appreciate and love them the way we do! I guess her shot at her 2 year appointment will be fun! Who am I kidding? The shot appointments never are any way! We did have some confusion with her endocrinologist and are switching to a new doctor in the same clinic. It looks like we may actually begin growth hormone therapy (Genotropin) as soon as July after turning 2. After stressing over the daily shots and the possible side effects, I found many people on the TS Society FB page that have taken, or have children who have/are taking them. Avery's pediatrician also said she hasn't had anyone have problems with them, and that she feels with all the other things Avery will have to worry about, her height may give her an extra boost of self confidence. What made me feel better than anything, is the several girls with TS who took them as a child that stated they were thankful their parents gave them the GH. I'm hoping it will become part of our nightly routine fairly easily.
We go in to see her opthalmologist this week for our annual check-up, but we don't expect to have any issues there. Avery seems to have great vision, and we haven't noticed any crossing of the eyes, or anything out of the ordinary with them. We will visit our cardiologist this summer as well. He has said we will ween Avery from her meds (Digoxin and Lasix) in the near future, so we are looking forward to that for certain! I'm always thankful for those appointments because we get to see her heart during the echocardiogram, and it gives us peace of mind in knowing everything is still working beautifully. Other than those appointments, we will see our urologist in the fall, and are praying for no reflux! I can't wait for Avery to be off of her daily (prophylactic) antibiotic.
As far as the everyday Avery, she absolutely loves being outside (and cries when we bring her in- more like has a throw-down). Her favorite shows are Yo Gabba Gabba, The Fresh Beat Band, and Blue's Clues.She is picking up new words all the time, and comprehends extremely well. She says words like...Please, Thank you, Two, Bee, Yeah, Juice, Fish, Hey...at least some variation of the words. Avery is very shy, and will cry when new people come around lots of times. On the other hand, she is Miss Congeniality at places like the grocery store and the ball field. We've found if she is outside, she is more apt to not worrying about who is around her. She still loves her Ko-Ko koala and her dolls. She plays with her kitchen and car a lot, and has begun a bit of pretend play.
She wants her way, and knows how to throw a good fit too. She is definitely a drama queen, but is also a complete sweetheart. Avery is very affectionate, so we love that! She gets along well with other kids, and is in complete awe of big kids. I look at her daily, and can't believe she is turning into a big girl. We have potty training ahead- eek! We have begun introducing the potty, but she is totally not ready at this point. I feel like it may take her a little more time physically and mentally, but that is way ok with us. Avery will be attending a daycare facility for the first time in August. The wonderful lady who kept her in her home has decided to retire. While I worried about it at first, I think this will actually be really good for Avery. I think her eating habits may improve, and she will learn a great deal. We found a nice place right between our house and my school. I felt at ease when I visited, and liked the way they did things. I know Avery will REALLY like the playground! Other than begin exposed to more germs/illness, I think this will be the right change for her.
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