So, I'm feeling like we are on the cusp of really moving forward. We definitely have a few setbacks here and there...the past couple of days being a little off. But for the most part, I think we are back on track.
First of all, we've been trying to get serious about this whole idea of gaining weight. And, in 2 1/2 weeks since her Vandy appointments, at 13 lbs. 12 oz., just yesterday, she weighed in at...DRUM ROLL please....14 lbs. 11 oz. Yep, Little Miss gained just shy of 1 pound in 2 1/2 weeks!! Just looked it up and the average this age is one pound per month. I guess we are growing!! She's been introduced to avocados, carrots, pears, and prunes. Unfortunately, we've been having some trouble with a bottle lately. Of course, like other things, I have suspicions about this. After observing and thinking through things a bit today, I think it has to deal with inter-cranial pressure (perhaps drainage issues). She will take a bottle sometimes...completely just depends. So, nursing all the time it is. Momma tried to get a break for a night out with the ladies to celebrate birthdays and had to cut it a little short to get home to a protesting little girl and upset Daddy. Realizing that it could be a bigger issue than just separation from Momma provides a little more motivation for me to know that nursing is easiest for her. As for the prunes...yep, we have those for at least one meal every day. We continue to have some constipation issues. If you want to know one thing specific to pray for, pray for Maggie's poopies to keep moving. We pray for poo ALL the time!
We are completely off the Trileptal (yeah!) and just today began the Clonazepam wean. We are prepared that things could get worse before they get better as her body detoxes, but it'll all be fine. The medicine wean is a major area of being led by faith and not fear. Fear would cause us to keep her sedated on all the meds, no matter what, to be absolutely sure she doesn't have seizures. However, we trust God as He leads us. We know that the anti-convulsants are also negatively impacting things. So, finding the delicate balance is the tricky part. Maintaining seizure control while trying to free her systems up a bit. Luckily, Shawn and I continue to be on the same page, and therapy and neurology are all on board as well. So, here goes!
Though we got rid of one of the medicines, we added another therapy. Last week we began speech therapy. I know, why does she need speech now? At this age, they work with us on feeding, making sure she is forming mouth correctly and moving the food properly with her tongue. Thankfully, this week she was finally pleasant for her occupational therapy appointment and starting out at speech. Both of them are here in town and are considered our short day of therapy.
We also had an ophthalmologist (eye doctor) appointment this week. He believes she probably isn't seeing the greatest. Her prescription has improved a little bit since our last appointment in September, though glasses would not be of benefit yet. Also, her eyes are slightly out of alignment. Originally, he noted her vision as "delayed visual maturation"-just slow to develop. He is now leaning more towards "cortical visual impairment", which is the communication between the eyes and and brain. He told me it is like a digital camera. You can take pictures all day long, but if there isn't a memory card, the images are gone. Basically we'll just wait and see. Another... "I'll see you in 6 months". I'm confident that as we continue with the therapy, we will continue to see improvements in this area. She'll occasionally have bouts of random laughter. Though I figure it is for some reason, I have never been able to figure out what in the world she is chuckling about. (It is really adorable and contagious). While we were waiting for her eyes to dilate, she was chuckling away 3 or 4 times. It got me thinking about what the dilation was doing. Upon a conversing with the PT assistant the next day, she told me that she knows from personal experience that her the tension on one of her eyes relaxed and her entire side of her face was actually able to relax when she had her eyes dilated once. So, what we know from therapy with the tension pulling back and down about was probably relaxed a little bit with the dilation, which probably felt really good. Interesting...
Some things I've been mulling around...
yeast overgrowth (candida)?? sodium retention?? heavy metal toxins?? leading to a mitochondrial disorder?? Now, it's just figuring out how to assess these things. Hopefully we will be doing a big blood work-up when we meet with the doctor out of New York while up in Connecticut.
Which, that brings me to what's coming up. Next Sunday, Nana and Grandpa Selmeski head up to Connecticut with us. We will have 3 days of therapy. Then we are meeting up with Uncle Brian and the cousins to go skiing in Vermont for the long weekend. I know Maggie's little life has had tons of experiences already, but, no...she will not be trying to ski. We'll be hanging out enjoying some down time and giving her body some time to assimilate all the therapy. Then, on our way back, we will have 2 more days of therapy. I'm sure we will be ready to see Daddy when we get back after the BIG trip.
As we close, I'd like to point out that we have been getting serious about our therapy homework (which is a part of her overall feeling better, I'm sure). Thankfully, we have had some great homework helpers to get all our connections made. Mostly it's the Friday morning coffee girls joining us throughout the week. We all really appreciate the help!! THANK YOU ladies and the kiddo helpers!!!