Sarah will be 15 months old on Friday! We’ve officially been out of the hospital since this morning and we start the maintenance phase (which includes outpatient chemotherapy, regular blood checks, and anything else that needs done) of her chemotherapy next week. Fun…but at least she’s home!
Due to her hospitalization (having spent 92 of the past 101 days in the hospital) and the things that accompany her illness, her development has basically stalled, and even started to regress in some areas, but we’ve seen surprising progress in other areas.
Physically she’s come to almost a complete stop from where she was pre-hospital. She’s no longer rolling or “scooting” like I reported in her first birthday post–I think because these skills went into disuse she has just forgotten them. We’re going to resume some PT (nothing serious, just low-key, 2x/week) in hopes of getting those skills back. She does sit up like a pro though! She’s reaching for and grabbing objects, and she likes to “study” them up close and go “oooooh!”
She recognizes about 25-30 signs. She signs consistently “mom” and “dad” (I’m mom, Dec is dad…thanks a lot you little shit!), “happy” and “cry”. she periodically signs “please” and “all done”. She’s getting very good at copying and probably copies about 90% of the time when we sign to her. She also responds by very enthusiastically nodding her head or very emphatically shaking it, which is funny.
She DOES speak a tiny tiny bit now! Her first word was “dad” and she will say it periodically if frantically signing “dad” does not magically manifest Dec in front of her. Her ST (one of the only ones we didn’t cut during her time in the hospital) says that she babbles very purposefully and that her formation of sounds is great. She’s a mimic in terms of sounds as well as signs and if you babble at her she’ll repeat it back. We’re thinking more words soon!
She came home on her NG tube. She’s still not particularly interested in eating by mouth and turns her head away or signs “cry” 😦 She has lost 4 pounds since starting treatment and is currently clocking in at 12 pounds 6 oz. We’re hoping that as her treatment dosages are lowered she’s showing more interest in eating and less interest in throwing up and we’ll see some weight gain. She looks like she’s wasting away and it’s so sad.
She’s completely bald and it’s super cute. I put a lot of horrifically ugly giant bow headbands on her head, because I can. Dec thinks that she needs these.
Despite what she HAS lost–weight, skills, her ability or desire to stomach solid food–she has gained some skills and some new friends on the oncology ward, and most importantly, she has not LOST her will to fight, her spunky personality, or the love she has for us. She’s the biggest joy of our life, and we’re so happy that she’s fighting and getting better and home with us. We can’t wait to see how she grows in the months to come!