A Little Bit of This, A Little Bit of That

The above picture shows just how far Kendal has come with letting things touch her face/head. I got Kendal some sunglasses to try to keep encouraging her to try letting things touch her face. As Ashley, our speech therapist, will let you know, Kendal is not too keen on anyone touching her face or head! Two solid years of Occupation Therapy once a week, and she is just now beginning to experiment with things. She will not allow us to put the glasses on her but she will hold them up to her eyes for a second at a time. Hopefully in a another year or two she will tolerate them being on her. Every time I see these beautiful little toddlers running around in cute little sunglasses, I feel like telling the mothers, "Hey, don't you realize how awesome that is? Not everyone can do that!"

.

Not much has changed since taking Kendal off of the Clonodine except she is SLEEPING now at night!!!!! That is a major accomplishment and we are all so much happier because of it. We have been pounding away this month with all our weekly therapy sessions and Kendal has been cooperating fairly well.

.
I can't wait until the weather warms up. Saturday afternoon I got out with Kendal for a walk and she had a ball. If only we could all be that happy just going out for a walk. She saw a bird, she SQUEALED! She saw a car go by, she SQUEALED! She saw someone else walking, she SQUEALED! -- I guess you get the point. Of all the lows that seem to come with this disability, I am so blessed to hear her beautiful laugh and know that she is happy.
.
This weekend she got sick and I had to stay at home with her on Monday. I keep forgetting to let little things clue me into when something might not be right with her. For example, Kendal did not woof down her lunch of mac-n-cheese like she normally would. Very unusual for my girl. I should have known something was up. It's just so hard because I have never seen her rub her tummy or groan or anything like that to make me think that she might have a tummy ache. How do I know??? Is she hurting physically but just doesn't know how to express it??? I guess I will be on a learning curve over the next 20 years.
.
Bath-time has been a new joy for Kendal. She doesn't play with any toys (Any other AS kids like this? She expects me to be her toy!) but she loves bubbles. The only problem now is that all she wants to do is eat bubbles. She lays belly down in the bathtub and eats all the bubbles she can. When she raises her head she always has a bubble beard and mustache. I'll try to get a picture. It's comical to say the least.
.
Anyway, nothing too exciting - just wanted to update everyone on how things are going.
.
Have a great week!

Medicine - The Great Unknown

We have been so busy the first month on the year. As Kendal fast approaches her 4th birthday, I'm finding that she is growing in leaps and bounds. Not only does she amaze me by figuring out how to dismantle things (such as: removing the battery covers on the remotes and taking out the batteries, trying to put the key in the hole to open the door, and most annoying.....only showing interest in my toys {cross-stitch, scrap booking, etc.}) but she is growing so fast physically. She seems to be bigger than most kids her age and as strong as an ox. I even have realized that now it is hard to catch her when she is running from me. Where has the last four years gone?

Kendal has also gotten more and more difficult to manage as far as her behavior goes. I think this makes sense simply because she is trying to stretch her legs and find her boundaries. I probably am more controlling than most mothers because I have to be. She has become extremely destructive, more aggressive towards me, and quite possibly trying to show me (or teach me) that I cannot control her like I could when she was an infant. Such menial tasks as dressing have become a major ordeal because she straightens out like a board and refuses to cooperate. Fighting against her just makes the issues worse so I usually try to redirect. I can just picture in her mind saying, "No, I want to do it my way!" I wonder where that attitude would come from??? I guess she is more like me than I even let on.

Because we have been so frustrated with her aggression, and outrageous activity level, we went to the doctor and they prescribed Clonodine. A nice side effect was drowsiness which we were looking forward to with all of Kendal's sleep issues. Wouldn't you know it had the opposite effect on Kendal. After 10 days, Kendal has gotten more emotional (crying spells - very unusual for her) and her activity level has not decreased along with very little sleep at night. We decided to pull the plug on the medication today so we will get her slowly off during the next five days. I am waiting to hear back from the doctor to see what other options we may have.

I have always been against medicating children simply because I feel like we over medicate our kids today. But simply put - Kendal does have a legitimate diagnosis and legitimate issues where medications can greatly help the child. On a positive note, the therapists and teachers did notice that Kendal was more participative in her therapies and that is one thing that we really think will help her. Just finding the right medication and dosage is a little scary.

Through all this I have really relied on my faith that God is with me through this. My problems are nothing that he is not aware of. I am grateful for the prayers I have received and so appreciative of the women in my Bible Study for continuing to pray for me and for our family. Every week God continues to reveal himself in what he continues to bring me out of. I am so thankful I am where I am and that we are not going through this alone. OK, I'm done with my sermon!