Progress in Therapy and Medical Concerns

I am aware that I am slow at posting and it is my goal to figure out a schedule or routine of when I have time to type, so I can keep everyone updated on Kinsley. Sorry for being slow, things are just BUSY all the time it seems.

So, what’s been keeping us so busy? Well, lets start with therapy. Kinsley has had some wonderful last few weeks at therapy. She’s been working hard and hardly complaining, which is wonderful! Thanks so much for all who have prayed for this specifically. She’s been working on some new skills and gaining strength in old skills. In PT Kinsley has begun to practice supported standing. We do this by leaning her against a wall and letting her try to balance and also by standing her against the couch or ottoman with a toy to play with and again trying to balance. She’s making some headway there, so yea! Additionally, Kinsley now has a “stander” at home that we use everyday. It basically keeps her in a standing position without her having to work to balance. This way she bears the weight through her legs, but doesn’t have to worry about working other muscles too. Apparently, this will be building her hip sockets too, which do not form in a baby until they begin standing and bearing weight through their legs. Another praise is that this skill is something she seems to enjoy working on and does not cause tears of any kind! Hallelujah! Kinsley also seems to want to take steps while standing which has a positive and negative side to it. It’s wonderful that she is initiating the steps on her own because it’s a wonderful sign of her walking at some point. The down side is we don’t want her to walk before she crawls. Crawling is going to be a very important step in her development. She needs to gain the muscle strength in her arms and build the neuro-pathways that crawling builds before she walks (because if she walks first she’ll have no reason to crawl!)

Supported standing using the wall.

In the stander.

So thankful she enjoys it!

Thankfully we have been making (slow) progress in the crawling department. I will admit there have been times when I thought there would be no way she would ever crawl, but I am building faith that she will based on her recent progress. Kinsley is now allowing her therapists (PT, OT and DT) and myself to put her body into hands in knees and will stay in that position for 5-15 seconds or so (usually with support from us holding her trunk). This is huge for her because as of three weeks ago she would just throw a fit and break down and often not be able to finish a therapy session after we tried it because she hated it so much. Bearing weight through her arms and/or having someone manipulate her arms is maybe the one thing she hates most in the world. Praise God for growing strength that allows Kinsley to tolerate bearing weight through her arms more! She’s still not a major fan, but it’s getting soooo much better. Additionally, she is becoming much better at getting into transition positions in sitting. She can get her body into a pre-crawling position (hands on the ground and legs turned to get onto knees easily) and get back out of it without much work at all. Yea! These are all great steps in the right direction. But, this can also give you a good idea on why progress can be slow. She has to be taught each step in the process and practice them over and over until they are familiar. Please continue to pray for progress and for Kinsley’s arm strength to continue to grow.

We started speech therapy yesterday! I’m glad to finally have that ball rolling. Several people have asked what we will work on in speech, so I’ll go over what I know so far. Yesterday we worked on having her make a choice between two objects in order to express a preference simply by reaching for the one she wanted. She did that very well which I would expect. The therapist also allowed her to play with a toy and then would remove it and get Kinsley to hit a button which said, “More, please,” when pressed before she would return the toy. She’s not supposed to understand what it means yet, but she definitely seemed to press the button with some intent a few times, so that’s good. She also worked on putting blocks into a bucket and pulling beads out while emphasizing the words “in” and “out” each time. The last thing we worked on was having Kinsley respond to her name being called while she was distracted with a toy. This is something I can never tell if she understands or not because she reacts to it sometimes, but not always. It went the same way at therapy with her responding 2 out of 4 times. So, we’ll see and we’ll keep working on it. Over all I thought the session went well especially considering she was working with someone new (which she doesn’t always respond well to). She never cried, fussed minimally (only while her hands were being manipulated which I mentioned she hates) and tried each activity, so I was proud of her! Another thing we will work on, but didn’t start yet will be signing words like “eat”, “more”, “drink”, “all done,” etc. Please pray for this therapy to be a successful endeavor and for Kinsley’s brain to open itself up to understanding language.

  

In medical news, we have some updates too. One thing I failed to mention in my earlier posts is about Kinsley’s vision. Kinsley has left esotropia (her left eye turns in slightly). This prevents her from having depth perception and at times makes her eyes look crossed. This was actually the very first problem we ever noticed with Kinsley at around 4-5 months old. At the time we knew it was a concern, but had no way of realizing it was in any way connected to any neurological issues. So, she has been seen by a pediatric ophthalmologist for a long time now. We’ve also been patching her right eye two hours a day five days a week in order to strengthen the left eye. Additionally, we’ve been aware for a long time that we would need to do more to help straighten her eye alignment. There are a couple of different routes our ophthalmologist recommended and we are beginning with the first, less invasive one in a few weeks. She will receive Botox injections in both of her eyes in an attempt to “reset the system” or realign her vision. The hope is that the injections will cause both eyes to reset and work together (whereas right now they work one at a time independently of one another). There is about a 30-40% chance of this working permanently. That doesn’t seem great, but the only other option is eye muscle surgery which is, obviously, more invasive and is not guaranteed to work either. Our doctor has seen success with the injections (though not always) and believes it’s a good first step and will not harm her if it does not work. So a few things to pray for here: Firstly, that the injections will work! Secondly, Kinsley will have to be sedated during the procedure, which is a somewhat scary experience for her parents, so pray that it goes smoothly. Thirdly, there is a possible side affect of temporary droopy eyelids for a week or so after. This would be no fun for her or us as she would not be able to see out of the eyes that were droopy! So please pray that won’t occur.

Playing while patched.

Also, unfortunately, something we were hoping to avoid forever seems to have begun. We are not sure, but for the past couple of weeks, almost daily, Kinsley seems to be having some seizure like activity. They are not the big, scary, grand mal seizures (thankfully), but they involve loss of motor control for the time it occurs. She is somewhat aware of her surroundings during them, but has some regular twitching that occurs and it lasts for about 10-20 minutes. It always happens after a nap and now she usually falls asleep again as it’s ending. Then when she wakes up everything is back to normal.  It is somewhat scary and stressful that this is occurring and I hate it. But, thankfully, she does not seem to be hurting, scared or really bothered by it at all. Also, right now they do not seem like they are affecting her abilities in any way, which we are very thankful for as well. We’ve scheduled an appointment with a new neurologist in Little Rock in a couple of weeks and she will be having another EEG done to check for the seizure activity. It’s possible they are not seizures, but this seems the most likely to us. Please pray about this as well. We really want them to stop. If there’s a medication we need to use, we will do that, but of course I’m nervous about possible side effects of that as well. But, whatever we need to do to help her is what we want to do. So please pray for the best in regards to stopping the seizures, that they will not cause regressions and also that this new neurologist will be much more helpful than the last one.

As I look back over all that I’ve written this time it feels like a lot to deal with. And it is a lot to deal with, but thankfully it doesn’t usually feel that way. Most days we are able to be happy and enjoy life, enjoy Kinsley without feeling the pressure of all that is going on (for example she recently has begun to enjoy laughing just because I’m laughing. Neither of us has any reason to laugh except that it’s fun. She looks so cute too. She’ll scrunch up her little nose and laugh and then pause expectantly waiting for me to do it too. Back and forth it goes until I’m too tired to keep it up.) I’m so thankful for that happiness and I know it is simply the peace that comes from God that provides it. We could not make it through this without him. Paul said it best in Philippians 4:11-13:

“…for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength.”

We know that it is God who is with us and guiding us and keeping us through this life journey. Just like he is there in the good times, he is there in the hard times and it is through him that we get our strength to endure. Thank you, Lord for your loving care!

Kinsley on her 13 month birthday (that dress was mine as a baby!)