Stay Connected

View RSS Feed

karahess

Keeping Busy

Rate this Entry
[color=darkred:3c772ec62d][/color:3c772ec62d]Hello, Hello! I can't believe it has been a year and a half since I've blogged. You've missed out on a lot of stuff that's been going on with us. LOL! Let's see if I can remember a year's worth of stuff and update you.

First off, since I last blogged I have attended 2 CHERUBS conferences :D If you have never attended one and you have the opportunity to, I would highly recommend it. It's a bonding experience that I can't even begin to describe. Well, yeah, maybe I can describe it a bit. . . . . have you ever sat down with your friends/family and thought to yourself "this stinks; not a person here can understand me and what I go through each day with a CDH child"? When you attend a CHERUBS conference you are in a room filled with those who share your life's daily triumphs and struggles. You realize that how close you are to people that you have met for the first time and it is a wonderful feeling. Here at CHERUBS, we are family! In the past year or so, I've also been blessed to attend 2 Pennsylvania CHERUBS get togethers, 1 Ohio get together, and the Angel Ball! My family and I look forward to many more get togethers.

Me . . . . . the past year, I have been really struggling with exhaustion, migraines, and weight gain. I've been feeling about as useless as one can get and I hate that feeling! :x I got myself to the doctor and as it turns out, I have thyroid issues. For the past 6 months I have blood draws every 6 weeks to check my thyroid. So far, we haven't been able to regulate it. It's getting better, but still isn't where we want it. I'm also really struggling with food the past 6 - 9 months. I have a ton of food allergies, but now it is suspected that I am Celiac. I've not yet been tested, but my doctor wants me to get tested for it. I've been trialing gluten free diets and I really do feel a ton better when gluten free. I just hate to go that route as it leaves me with not much to eat.

My oldest son, Aaron, started Kindergarten this year. So far, he is bored silly. He comes home telling us he wants to skip Kindergarten and go to 1st grade. The principal has already told us that Aaron is way above the school's Kindergarten curriculum. We meet with the school in 2 weeks to discuss our options. Aaron also continues to have issues with reflux. His medication is no longer effective and our pediatrican is no longer comfortable handling the case. On Monday, we take Aaron to see a gastro doctor.

Adam, my CHERUB, is now 3 and full of life! He's the most tenderhearted and kind child I think I've ever met. Of course he's all boy as well and does know how to be a bit of a stinker. LOL! Adam continues to struggle with dysphagia. We've had him in feeding therapy (VitalStim) since June. I'm not yet convinced that the therapy is helping the swallowing problem :cry: We'll continue on for about another month and then get another swallow study done. Adam is also Apraxic (neurological speech disorder). He's in speech therapy for that and is making huge strides. :D I'm running like a chicken with it's head cut off with the therapies. Feeding therapy is every Tuesday and Thursday. Also on Tuesdays he has speech therapy and on Thursdays he has a preschool teacher come into the home to work with him. I'm basically left with Monday, Wednesday, and Friday to fit in all the rest of life (house chores, doctor appointments, school meetings, etc.).

There you have it; there is my life the past year. Hopefully, I won't wait so long for my next update. LOL!
Tags: None Add / Edit Tags
Categories
Uncategorized

Comments

  1. Cheryl's Avatar
    Sounds like a full year! Hope the coming year is even better with some time for you to breathe!

    One note about Celiac, I recommend getting tested ASAP, better to know than not know, for your children as well, its very genetic! Plus, if you start taking gluten out of your diet it becomes hard to get an accurate test result. As someone who has watched a close friend go through it, its much better to know. Turns out after her son was diagnosed, her husband, his father, his brother and others were too, you could save more lives than just your own.