wolfhirschhorn.org

Elsa just turned 1, and we’re looking forward to lots of progress in 2013. We’d love to share her current status across a few areas — ones that we’re always keen to read in other people’s posts, as we look to the future and wonder what might be in store for our angel. Hope this is of help to others, too!

Weight: Elsa weighed 14 pounds on the nose at her 1-year check up. We’re so very pleased with her weight gain, since she got her G-tube in September, at 9 months of age. She had really plateaued, in terms of growth, in the summer, and the G-tube — while a very difficult decision — was absolutely the right one and has helped Elsa maintain a steady upward trend in weight.

Height: At her 1-year check up, she was 27 inches long. That puts her on the CDC chart for height — woohoo! She is one string bean! While her weight does continue to increase, she can’t quite keep pace with her height. Such a long and lean one she is!

Seizures: Elsa had her first seizure (the earlier “episodes” weren’t actual seizures) in October. That put us in the ICU for not one, not two, but 10 days. This had less to do with her seizure and more to do with the breathing tube they put down her throat, which was much too big. Getting on the right track with meds has been a bit frustrating. They started her on generic Keppra, during her October stay. She broke through that dose (1 ml a day) in one month, and we ended up back in the ICU. In November, they bumped up her dose to 2 ml a day. Then with her December growth spurt, we bumped up to 3 ml a day (1 ml in the a.m., 2 ml in the p.m.). Vitamin B6 has been CRITICAL to her emotional stability. Elsa has always been a chill babe, but the Keppra really does a number on her. The B6 keeps her level.

Feeding: It’s always a roller coaster, but with the G-tube, we can weather the rough patches. When her routines is turned upside down, we see it play out in what we call “feeding strikes,” when she won’t take a bottle. We also are constantly reading her oral cues, and adapting the nipple of her bottle accordingly. (Sometimes she can only handle a Level 1 — though currently, she uses a Level 3.) We’ve swaddled her to feed her since early on her her life, to help her concentrate. On her first birthday, we decided to drop the swaddle and (though it’s hit or miss) she’s been doing OK! Seems to really enjoy touching the bottle and taking her time with it.

Solids: We’re really excited to see progress here, but haven’t seen a bunch just yet. She tolerates just about anything. But the closest things to “likes” have been pumpkin icecream, green beans, garlic powder on savory stuff, and cinnamon on fruits and in cereal/oatmeal. The spices were an idea of our feeding therapist and have gone over well!

Hearing/Speech: Elsa got her hearing aids in November. She has a VERY minor loss. (Only misses out on the softest sounds, like birds chirping or the consonants “sh” or “th” or “ff.”) But they’re essential for her speech to be refined. We hear speak lots of the phrase “bim!” and the consonants “mm” and “nn” and “gg” and “ww.”

OT/PT: We’ve seen gains in a few areas here. Elsa is able to focus on and track objects. While she won’t reach for things (aside from momma’s face and arms, and her nanny’s hair, sometimes), she is now able to touch and sustain her gaze at the same time. (It used to be too stimulating for her to do this.) Her sitting up is MUCH improved, and she’s able to put weight into her arms, while supported. She likes to stand, supported. And she’s activating her abs much more these days, pulling her knees into her chest and throwing her knees side to side, a precursor to rolling over, we hope!

Announcement: Elsa will be a big sister this summer! We’re very excited and know that she will be an amazing sissy!