I suppose it goes without saying that “no news is good news” from a certain perspective. Anastasia is more work than any other of our children by herself, but in aggregate her seven siblings exert quite a demand on the time and attention of us both so while we do have a good excuse — eight of them, actually — for this update to be so late, this is something we initially planned to send weeks ago.
Anastasia has been progressively doing better. She still has “storming” episodes (periods when she is having seizures that won’t respond to the rescue drugs) but not as frequently and not lasting as long as they used to. These consist of high continuous heart rates, frequent seizures varying from quiet and mild to noisy and intense, agitation and body temperature irregularities. Rescue drugs do not seem to help these episodes… at least not in a timely fashion. She’s had an adjustments in medications which has helped with reducing the episodes, and we have added in a new med that is often used to help children who have night terrors. The overall medication adjustment has helped calm her brain a little. We give this to her twice a day and credit her improved condition to this in addition to the increase in seizure meds, as well as the many prayers from everyone!
One of the reasons Anastasia has needed these medication increases is because she has gained considerable weight recently. Her visit to the endocrinologist on August 10 revealed a weight of 12 lbs. 1 oz. (and 21.6 in. long). July 30 she had just weighed in at 10 lbs. 13 oz. We are not sure if perhaps her kidneys were holding a little extra water and that was contributing to the weight gain, but she is plumping up with cute fat rolls and everyone is loving it!
We got some family photos done recently (a little taste below); Anastasia’s cousin Veronica did the honors, as she has her own budding photography business (please check out her website!). We will try to post more of these as they become available.
Night help: it’s been a HUGE relief to get some overnight assistance! We get help 5-6 nights a week (some half nights, some whole). We still have not heard back from any nursing agencies about getting help from them, but Medicaid has allowed us to hire our own help using a payroll company, so our three regular nighttime helpers are people we know and trust. One other occasional night time helper volunteers her time, mostly during the day, but on some of the nights when we don’t have help and we are very short on sleep, she stays until 1 or 2 am. What also helps is that Anastasia will sleep through most of the night about half the time, which helps us and our overnight helpers! 🙂
Recent “yay“ moments: Anastasia has attempted to nurse a few more times, for longer periods of time (a couple minutes as opposed to 10 or 20 seconds) and with a little bit of success. She is making noticeable though small amounts of progress in occupational therapy. She is still smiling and focusing her one good eye on mom almost daily. She recognizes mom‘s voice and turns towards her when she hears it.
A couple new items to share: Anastasia had a visit from a chiropractor the other day, and she also got to take a dip in a saltwater pool with us a little over a week ago. The chiropractor, who specializes in pediatrics and pregnant mothers, did a house call on Thursday. She did some gentle adjustments on different areas of the body and Anastasia‘s head is now smoother and a little bit rounder, a little less pointy at the crown. She released a tense muscle in the back of her mouth so hopefully she will be able to nurse a little bit better. The chiropractor was very excited to work with her, and is looking forward to coming back next week and hopefully many more times.
Anastasia did wonderfully in the pool. She did not need her oxygen, and her feeding tube was already out, so she was “wireless.“ She already loves the water, sometimes even practically sleeps through her baths, and she was pleasantly vocal in the pool. We kept her in there for about 20 minutes. It was a happy day!
Thank you again for all of your prayers — and your forbearance on the slow updates! We are praying that her storming episodes get under control and that we can have more alert time with her!
Through drowsiness with love,
Daddy and Mommy
And the best part: PHOTOS!!!
A little sleepy, but that’s okay for formal pictures. It’s exhausting being so cute all of the time!
Anastasia with her supporting cast
Anastasia’s awake photo (by cousin V)
We’re not sure if she’s striking a disco pose here or not.
“Wow…this sort of reminds me of the day I was born!”
It’s always cuddle time — good thing she’s got cuddly brothers!
