Sunday, January 10, 2016

17 Months Old and 1 Year Seizure Free!!!

Aberdeen is 17 months old today! She is so much fun right now, loves playing games with us, and is usually happy despite lots of teeth coming in - she's up to 10 now! She continues to hover right around 20lbs, is 29.5in long, and has gone a full year FREE of seizures (as far as we know)!!! I'm so thankful that the Cincinnati neurology folks got her seizure activity under control as quickly as they did, and that it has continued to stay under control without ever needing to adjust her meds. I'm hoping that her new neurologist will be similarly pleased and open to discussing a possible wean. We've been told that it's standard to wait until a patient had been seizure-free for two years before weaning meds, but since her seizure activity was thought to have been caused by a brain bleed that has since resolved, we think it might be reasonable to try a wean at this point. We'll meet with neuro toward the end of this month and see what they say!

This week also marked the end of over five months of treatment for a persistent GI issue. It was never really more than a nuisance, so I didn't talk about it, but I'm super glad to be done with another med! 

Speaking of meds, it has been interesting to discover lately that our friends and some family had no idea how many meds Abby was on. I guess I've never really talked about it on here, because it's just our normal day-to-day, but I suppose it is kind of interesting: she's on 7-8 different meds (depending on the day), with 15-20 total doses throughout the day. Her med regimen is just one of the reasons we are incredibly thankful for her g-tube. Even if she were a fantastic oral eater, getting 20 doses of meds a day into a 17 month old would be WORK! As it is, Aberdeen still takes nothing by mouth, but even if she someday starts eating like a champ, we'll keep that tube for meds!!!

Though she may not be eating yet, Abby is tolerating some oral input (like teeth brushing) much better than she used to! Even into October, she would gag and scream and puke every time I attempted to brush her teeth. But thanks to lots of work, and a great speech therapist, she has made a ton of progress. She will bring food to her mouth now, and even bite down on it sometimes. After that, she kind of freaks out and either gags or spits out the food, but it's a huge step in the right direction. Yay! We're also starting to work on some signing! Ironically, the signs she's picked up on are "eat" and "drink" :P.

OT and PT continue to go well. Abby actually enjoys standing and is working really hard at pulling up. With this new-found interest, she is starting to try to pull to sitting from laying down as well. Transitions have always been a huge challenge, so we're thrilled that she's showing interest without prompting! They've been taking her in the pool the last couple of weeks to work on those transitions, which has been really fun and different! She's still working hard in the gait-trainer, and we're trying to get her to use her feet reciprocally, though she would rather use a technique something akin to cross-country skiing.

Things have calmed way down on a cardiological front. An additional echo at TCH showed no change from the level of outflow obstruction we'd seen prior to our move, so we're finally starting to accept that things aren't quite as dire as we were led to believe throughout October and November. We're still waiting for the second opinion from Cinci to confirm what TCH is saying, but with how great Aberdeen is doing right now, I expect they'll say that there's been no change. Whew. Assuming Cinci comes back with the conclusion we think they will, we'll stop seeing her local cardiologist and only have her followed at TCH.

Abby's been dealing with a nice series of minor winter illnesses, including her first ear infection and a cold, but they haven't slowed her down! We've been putting her on CPAP during her naps (in addition to her normal night time routine), just to give her a little break during the day. Hopefully we can avoid anything more serious as we are coming up on the 1 year point from her last long inpatient stay!!!

In other news, we had a really wonderful and low-key holiday season. We got to see lots of friends and family, and just generally were able to relax and enjoy our sweet girl at home. It was fantastic. 

The next month will include a trip to Houston for a neurosurgery follow-up, as well as local follow-ups with neurology, GI, and pulmonary. Hopefully we'll get Abby's home gait-trainer and continue thriving on all fronts! I can't believe next month Abby will be a year-and-a-half old!

 (I would just like to note that Blogger changes the font of my posts according to its whim, and not at all to my liking.)


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  2. Love seeing her playing the drum! Yay Abby! - Kyle Freesen

  3. These pictures made my day! I love reading about Abby's continued progress and amazing feats. Lots of thoughts and prayers for this beautiful baby and her awesome parents.