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!
Wednesday, September 06, 2006
The passing of time is supposed to heal all wounds and make the pain easier. However, as much as we are used to the idea that our little girl is always going to be very different, it is hard to face the reality sometimes that we will also miss out on so much. A blatant example of this is attending a wedding this past weekend and watching the Bride walk down the aisle with her Father, and the Father/Daughter dance.
A very good friend of ours got married this weekend and instead of my usual "tearing up" during the Father/Daughter dance... I found myself wondering if it were possible that Jenelle would ever marry, and if and when that day ever happened, would I be like the Mother (played by Diane Keaton) in that movie called "The Other Sister". The Mother who thinks that their special needs child could not possibly be taken care of or loved as much as she has done her entire life. Or that her child is incapable of finding love and living a full life in that way. And then I realized the change in myself. Instead of knowing Jenelle would never have a chance at any of that - I see that I now have hope that things can be different for her, and perhaps in a way "normal."
Last night's season premier of our favorite show House had me thinking about that as well. One story line was about a man who was paralyzed who drove his wheelchair into a pool in what they thought was a suicide attempt. The wife told Dr. House, "You are the first doctor to ever give a damn about his quality of life." Boy, does that sound familiar. Dr. House of course found a cure for the man and at the end of the show. After a simple injection - the manstood up, spoke and hugged his wife. We're still looking for Dr. House. And in today's world of advancing science - I know there is hope for Jenelle.
Not much new to report these days. Jenelle starts school again tomorrow, and unfortunately has been taking some bruising from her recent falls out of bed. Last week she actually reached out to pet a friend's dog - something I never imagined would be possible. And I swear... She is so close to communicating and possibly saying that first word with meaning.
Last night, the kids were with Brett's Aunt while we went to an Angels game. When we picked them up, Aunt Nicki informed me that Jenelle said loudly "Mum" and Jack told Nicki that Jenelle was calling for me. Sometimes Jack likes to make up things he thinks Jenelle is saying. Maybe he does understand her in some way? I sure hope so!
The photo above is the first I've ever caught of Jenelle wearing a baseball hat. Usually they do not fit or she pulls them off before the camera can catch her. The hat is from Grandma & Grandpa as a souvenir from their trip to the Little League World Series. Isn't she sweet? And so big!
I'll keep you posted!