Monday, June 10, 2013


So I realize it's been FOREVER since I've posted. Life is just constantly busy and every time I found myself with time to sit down and type I've decided I'd rather read, watch Netflix or nap. Not to mention that I spent the last two months trying to get 60 hours of professional development in by May 31 while Kinsley napped just to keep my license up to date so I can maybe sub once a month or tutor or SOMETHING next school year. Of course I should have done many hours in previous months, but I was a tad distracted. But I digress.

Kinsley has had a busy month and a half since I lasted posted. We added a third medication for her seizures at the beginning of May in an attempt to get them totally under control. She started taking a steroid which had been shown to work well with other kids with similar brain abnormalities at stopping their seizures. We were told it would probably work to stop the spasms while she was taking it, but that there was a 40-60% chance they would reoccur as the steroid was weaned. Unfortunately this is what has happened. She took a full dosage of the meds for two weeks and we saw a nice 10 days seizure free. We saw Dr. Sharp, our neurologist and had an EEG during this two week period. Her EEG at the time looked "pretty good" to quote the doctor. It was not a normal EEG reading, but he basically said it looked as good as it could without being normal. He said there was no sign of the spasms effecting her brain waves at all. That was WONDERFUL news. She was only showing a few spikes on her occipital lobe during sleep which several other MEB parents have told me is similar for their children. Those spikes are very minor and do not require any extra help. Also despite these happening during sleep he said her sleep waves look great otherwise and she has been sleeping very well of late which we are thankful for.

The main issue with this good EEG reading was it's possibility of being a temporary thing. We were told at that appointment that we would wean the steroid down for five weeks and then go back for another EEG to see how things looked without the steroid in her system (in case you are wondering, she cannot stay on the steroid permanently because it's not good for anyone to do so). So this past Saturday was the last dose of steroids that she would take. As we've weaned the steroid we have gradually seen the spasms become a bit more frequent again. There does not seem to be a pattern to when they occur. We've seen them five days apart, then two days apart, then three days, etc., and now it's been seven days seizure free again. We're very happy to not see them so often, but obviously we want them gone for good. Unfortunately Dr. Sharp did tell us it is possible we will never get them under control completely. But he did say as long as they stay infrequent and her EEG continues to look good like the last one then we can be happy. Obviously it would be best for everything to be normal, but this would be the next best thing. So our next step is another EEG and appointment with Dr. Sharp this week to see how things look now that the steroid is totally weaned.

As for Kinsley's progress in development we continue to see slow, but steady gains for which we are always grateful. One wonderful development in the past month has been Kinsley's first signs of understanding some language! Yea for receptive language progress! About a month ago now Kinsley started to respond to the words, "Give me kisses," without any puckering from us as a clue. She just leans right in and lays one on you. Sometimes it's closed mouth, sometimes open and even occasionally with a bit of tongue. Obviously, we're not fans of the tongue kisses, but we just make sure to keep our mouths closed! Now she doesn't do it every single time we ask, but she has done it sooooo many times now that there can be no doubt that she understands it! :) Then a couple weeks later she seemed to begin to understand when we say, "Yea, Kinsley! Yea!" She's been working on clapping for a few months now and has been able to randomly do it since about February, but only when she felt like it. So whenever she did it I would always say, "Yea, Kinsley! Yea!" And we would clap along with her. So suddenly she started to get it. We would be working on a skill for therapy and when she would complete the skill I would say, "Yea, Kinsley," and start clapping and a few weeks ago she began to copy me with the clapping which was very exciting to see. So then I would just be holding her and I'd say it again and she now will (sometimes) clap just hearing us say it! I know this may not sound like much to some, but for us it's wonderful to see the beginnings of her understanding us!
Clapping girl
Physically the progress is still slow and we have not reached crawling or walking yet, but she is still getting closer and closer. She can maintain her hands and knees position for longer periods of time and even tries to reach for things while in this position, which is an important step in crawling forward, obviously. She also will rock her body back and forth which is a step before actually moving forward as it helps her body feel the motion of bearing her weight first in the front and then the back over and over. Walking wise she has been using a walker in therapy! She by no means can use it on her own and requires trunk support and for her hands to be held or tied to it (I know that sounds terrible, but they're really just wrapped). As I've mentioned many times before, she hates having her hands manipulated so this is something we're slowly having to accustom her to, but once again she is making progress! She's also making progress towards independent standing. We can hold her around her knees and have her support the rest of her body on her own. The lower we get our hands the closer she gets to independent standing! Please continue to pray for these endeavors for her.
First time trying out her walker. :)
She has also begun pool or aquatic therapy. We've gone twice for about thirty minutes each time and she seems to really enjoy it! She loves to splash with her hands and last time she literally splashed for thirty minutes straight. Her arms must have been sooo tired afterwards. She will also kick her little legs under water and just overall seems like she could be a great little swimmer eventually. For those of you who are wondering why pool therapy helps, it increases the resistance against her muscles, but takes gravity out of the equation, so she doesn't have to work as hard, but gets more benefit to her muscles. :) Yea! We also can work on standing on the steps in the pool and get the same benefits of making it an easier task for her.

Kinsley has also made great progress in self-feeding. About 80% of the time now she will feed herself finger foods right from her tray or plate! Yes! This is a great skill (and makes meal times easier on mama)! I'm still having to feed her anything that comes from a spoon, but I'm ok with that for now and she's making slow progress towards doing that herself too. She will pick up the spoon very rarely, but will take it from me sometimes and put it in her mouth, so progress. :)
Good self feeder! Good as in "feeds herself", not good as in "has good aim". ;)
In the vision area, we have seen a return of the eye crossing in the past few weeks. This was expected, though we were hoping not. This probably means either another round of botox to try one more time to see if it could help permanently or the other option would be eye muscle surgery. We'll see our eye doctor in July to decide. Kinsley did get her glasses a couple of weeks ago, though and I must say they are ADORABLE! At first I thought she was going to mess with them constantly as she did just that for the first little while, but honestly within one day she seemed used to them and really leaves them alone quite well. We are very pleased by that. As for how much they're helping? It's hard to say. Many, many people have commented that they think she has noticed them much more and has been paying more attention to what is going on around her. It's hard for me to tell. There have been times when I thought not, but then others where it seemed quite clear that she was seeing much further than she had before. So, we hope they're helping. But either way, we know she will always need them, so at least she is getting used to wearing them already and we know as she ages and develops more ability to move they will be more useful for her then.

Cutie with glasses
In the last couple of months our baby girl has grown into a toddler for sure. She looks so much older and her limbs are soooo long. She's a tall girl. :) Her are some pictures lately. (I'm not sure why some of the pictures are squished, but blogger won't let me try to format them. :/ Sorry!)

We continue to be amazed and feel so blessed by God at how well Kinsley is doing considering all the odds against her. We feel overwhelmed with love and support from all of our family, friends, and all you out there praying for our sweet girl. Thank you all!
1 Corinthians 15:57, "But thanks be to God, who gives us the victory through our Lord Jesus Christ."