The Hill Family: one year update

I still can't believe my baby girl is already one year old!! Presley is continuing to make great progress especially in the gross motor department. At her physical therapy session last week her therapist said she had met all of her goals so far except for standing on her own. She is now a master at crawling and she always does a bear crawl where she stands up on her feet while still trying to crawl, she is walking behind a push toy, cruising all over the place and is now able to cruise from one furniture piece to another. We're still working on the standing but she has done it for a few seconds on her own and instead of falling down she is able to do a controlled squat to get down which the therapist was impressed with. We're still struggling with communication which is a concern. Presley did start saying baba about a month ago ( May 22 to be exact) which was very exciting! She has said mama a few times but doesn't associate it with me she just babbles the babababa sound or the mamamama sound but it's still progress. She is just starting to get the hang of waving and will occasionally wave bye bye when someone imitates it for her but her early interventionist says she would expect to see more imitating by now so we still need to work on that since she's not pointing, clapping, ect. We're also struggling a bit when it comes to her self-feeding, she hasn't mastered the pincer grasp so it's hard for her to pick up small pieces of food. I keep offering her finger foods so she can practice but she isn't eating enough to fill her up so she's still eating a lot of baby food for now until she can really get the hang of self feeding.

We are going to be changing some of her meds which is nerve wracking since things have been good on this combination of meds. Topomax, one of her seizure meds is making her blood more acidic than it should be which is causing her to breathe heavy (she always sounds like she's panting). We've lowered her dose three times trying to get it under control but her breathing still isn't perfect so this will be her last week of topomax and then we'll start Keppra. Topomax also doesn't allow her to sweat so babies can easily get overheated especially during the summer so I am glad to be off of it just in time for the warm weather. We still have another month and a half before we start the wean of Vigabatrin which absolutely terrifies me since this is the med that finally stopped the seizures but it's not a long term med so we have to wean and just pray they don't come back. I've read that cognitive development can really take off once babies are off of topomax and I've also heard this about the vigabatrin so I'm anxious to see if we notice positive changes once some of these meds are out of her system.

Most importantly though Presley is a very happy little girl which makes this whole journey a little easier for me. She is always smiling, playing and into everything! She loves her brother more than anything he's usually the only one that get her really laughing, it just melts my heart to see them together. She has just started crawling over to me during her therapy sessions or playing to rest her head on my lap and have some cuddle time with mama which just makes my day, she definitely knows her mommy!

Here are a few pics from her bday party last weekend.