Jenelle had a follow up appointment with Dr. Idries, her G.I Doctor on Monday. As you know, Jenelle is improving in all areas and feeding is no exception, thankfully! I told Dr. Idries that we've had some improvement with oral feeding but it is coming on very slowly. Jenelle has been showing some interest in her food lately, and sometimes tries to bite the can of formula, or dish of food when placed in front of her. A good sign that she is seeking what she wants! Sometimes I find it easier to feed Jenelle if we let the dish sit in front of her on her tray before trying to spoon feed her. That way, she is more interested once she sees and smells the food! So far, its been working however she still she is not eating enough orally to keep her surviving, so we'll still be on the g-tube for a while.
The good news is that the doctor wants to "wean" Jenelle off her pump feedings via G-tube at night in order to increase her appetite during the day and help improve her eating skills. This is great news and a move towards improvement! In addition, Jenelle is still trying to sip from a cup, straw and over the weakened managed to sip well from a sports water bottle! We're on the right track to say the least!
As you know, Jenelle has been falling out of bed. Although she laughed with her first fall, she has since been injuring herself with bruises, scrapes and cuts. I spoke to the manager at "Sleep Safe" beds and she suggested we get the "Sleep Safer" model as the rail guard is 36" in height. (http://sleepsafebed.com) I put together a letter to our doctor that included photos of Jenelle's current bed and her bruises, and this morning, Dr. Shields office called and said they will submit a request to our insurance for the "Sleep Safe" bed. Who knows how long it will take to get it, but at least we are getting started!
Jenelle started back to school last Thursday and really seems to enjoy being back in her routine. She really seems to be understanding thing more, and things are looking hopeful. Her IEP should be sometime next month, so I'll have more to report soon. Thanks for the continued prayers - I'll keep you posted!
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2 comments:
That's great. I noticed a huge difference in appetite when we got rid of that dreaded pump. Good luck.
Hello Jenelle's Mommy
I started reading your blog several weeks ago. I am interested in your messages because I too am the mother of a wonderful little girl that suffers from uncontrolled seizures. I started reading your blog because you mentioned that you visited UCLA. Our neurologist had suggested a visit to UCLA or UCSF for a second opinion. And I saw that you had been there. I am so inspired by your blog. Your daughter is beautiful! And you are in my prayers. I cant get over the blog that you wrote about the child that passed away in at the ICU. You and I must always thank God that we have our little girls to love. I also commend you for being an advocate for your child, I have had to do the same. It is really hard to understand all the confusing medical terms when it comes to neurological disorders. Thanks for your blog! I will keep thinking about you everyday and will also keep you and Jenelle in my prayers.
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