If you have read the series "Unglued" by Lysa Terkeurst you can completely relate to the many moments of becoming unglued I am having lately. Keelie's eating has been a big struggle for her lately. She really only has one, no two, foods in her diet. Chicken and French fries. And not just any chicken and french fries. It has to be from Wendy's, Chick Fil A, frozen Tyson nuggets, even popcorn chicken from Walmart. Now....those of you who know me, know I don't like fast food or frozen chicken nuggets...gross. BUT, if that's all I can get her to eat I guess something is better than nothing. So how do I get this child to eat? Her Daddy cooked homemade oven fried chicken and oven fried fries for supper tonight. She wouldn't eat. She did finally eat a bite but had to spit it out. She pocketed it right to her cheek. She spit it out and we tried again. This time the results weren't so good. She gagged until she threw up. TWICE....a great ending to a lovely meal. At least I hope it was from gagging and not stomach virus. I guess time will tell. Today she ate a few Cheerios, drank a glass of milk, had a Capri sun, ate a small bite of turkey sandwich meat and cheese but then had to spit. That's all she's had all day. And this is a typical day lately.
My next struggle is potty training. I wish I knew if Keelie knew when she needs to go or not. She should be potty trained but she's not close. Others with her disorder do have bathroom issues. I just don't know yet but gosh I sure wish I did. It would be so nice to have her out of diapers. I've been told she may not feel the sensory of needing to go until its too late.
So back to my unglued comment. I tend to want to come unglued with Keelie on many occasions throughout the day, but I know it's not the best thing for me to do. I do become emotionally, physically, even spiritually tired, but in the end I hope I am doing my best to nurture her and help her grow in the right direction. It is challenging. Now I can promise you Keelie does get disciplined and treated just like her sister and brother. I feel it's best for her, but sometimes it backfires....lol. Keelie's feelings get hurt really bad and really easily and when this happens she shuts down. So one can forget about getting her to do anything until she perks back up. So if it happens during a meal, well it's bad news. She doesn't eat.
So that's all I will discuss tonight. I hope you all have a wonderful Friday and weekend. Thanks for following the blog.
Thursday, January 24, 2013
Sunday, January 20, 2013
Updates
Yes, I know it's been a long time since I've updated. I'll try to keep it short and sweet. Keelie has been doing really well. She's putting 3-4 words together now. Which is huge for her. I love seeing her progress and its so much fun having a mini conversation with her. She's so expressive. It's just darn cute. Lol.
She is still pretty weak. She continues her occupational therapy and physical therapy. Both are helping but there are still many things she can't do that she should be able to do at her age. For instance, in PT she can't jump like a typical 3 1/2 year old. In OT she still uses all her fingers to hold a pen, pencil, fork, etc. she also hasn't really favored a side. So we don't know if she is going to be right handed or left handed. She has new braces coming in January 30th. Her other braces are almost too small. Her balance improves so much with her braces.
February 21st we go to her eye doctor. Her right eye is not always tracking with her left eye. Sometimes she will look a little cross eyed. Hopefully it will be an eye muscle issue since she has hypotonia and nothing else.
Keelie had an EEG last October. She was a trooper during the test. Unfortunately her seizures have not gotten any better. In fact, she said Keelie was having significant spikes in her occipital lobe. We talked about Keelie's staring episodes. I always referred to these as shut downs and never thought anything about it. I would assume her feelings were hurt or she was just having a "girl" moment. I was wrong. These are mini seizures. So the sad part to he story, an increase in medicine. Boooooo.
Keelie did get the flu. Fortunately, we were able to stay out of the hospital and treat her at home.
I helped teach Keelie's class at church this morning. Wow.....it's really an eye opener when I'm around other kids her age. They are so much more advanced than her. It really breaks my heart. She talked a little, but not much. There's one little boy in there who was born on the same day as her. He seemed 2 years older than her. These kids are also potty trained. I don't worry about Keelie being behind near as much as I worry about other kids making fun of her. It breaks my heart to think kids will mock her speech or laugh at her due to her inabilities. I know kids don't understand her but it would be so much better if parents could explain to their kids that Keelie or any other child with a disability was born that way and they can't help it. It would be great to have kids who accept her for who she is because she is a beautiful, fun, loving little girl.
I'll try real hard to update more often. Please pray for Keelie and for us. It takes a lot of patience for all of us.
She is still pretty weak. She continues her occupational therapy and physical therapy. Both are helping but there are still many things she can't do that she should be able to do at her age. For instance, in PT she can't jump like a typical 3 1/2 year old. In OT she still uses all her fingers to hold a pen, pencil, fork, etc. she also hasn't really favored a side. So we don't know if she is going to be right handed or left handed. She has new braces coming in January 30th. Her other braces are almost too small. Her balance improves so much with her braces.
February 21st we go to her eye doctor. Her right eye is not always tracking with her left eye. Sometimes she will look a little cross eyed. Hopefully it will be an eye muscle issue since she has hypotonia and nothing else.
Keelie had an EEG last October. She was a trooper during the test. Unfortunately her seizures have not gotten any better. In fact, she said Keelie was having significant spikes in her occipital lobe. We talked about Keelie's staring episodes. I always referred to these as shut downs and never thought anything about it. I would assume her feelings were hurt or she was just having a "girl" moment. I was wrong. These are mini seizures. So the sad part to he story, an increase in medicine. Boooooo.
Keelie did get the flu. Fortunately, we were able to stay out of the hospital and treat her at home.
I helped teach Keelie's class at church this morning. Wow.....it's really an eye opener when I'm around other kids her age. They are so much more advanced than her. It really breaks my heart. She talked a little, but not much. There's one little boy in there who was born on the same day as her. He seemed 2 years older than her. These kids are also potty trained. I don't worry about Keelie being behind near as much as I worry about other kids making fun of her. It breaks my heart to think kids will mock her speech or laugh at her due to her inabilities. I know kids don't understand her but it would be so much better if parents could explain to their kids that Keelie or any other child with a disability was born that way and they can't help it. It would be great to have kids who accept her for who she is because she is a beautiful, fun, loving little girl.
I'll try real hard to update more often. Please pray for Keelie and for us. It takes a lot of patience for all of us.
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