Saturday, October 10, 2009
Last week we had our appointment for the swallow study. Josh wasn't able to take off work, but luckily, my Mom was available to come with me. She was a big help since I've never been to this hospital before and didn't know where I was going.
We couldn't really get Caydence to suck on the bottle at her appointment, but the few swallows she did do, went down alright. They put a lot of the barium down her ng tube and watched it go through her intestines. The good thing is, is that her insides seem to be working alright.
After her swallow study we met with the speech therapist and then the cardiac nurse again. They seem to think the reason that she is coughing/choking/not taking her bottle is because she has reflux. They think she has figured that after she takes her bottle, she feels yucky, so now she doesn't want it. They decided to put her on Raninidine which is supposed to help. Then they referred us to a GI specialist.
So this past Wednesday we went to the Children's Hospital and met with a GI specialist. I am proud to report that Caydence has broke the 9 lb mark. She is now 9 lbs 2.2 oz! We talked a lot about her feeding tube with the specialist. She also thinks Caydence may have reflux and since this Raninidine we got last week isn't helping, she gave us a prescription for a stronger medication - It's like generic Prilosec. Hopefully that will help.
By the end of the appointment, we agreed that we would try the Prilosec for the next month and then meet with the GI specialist again in 4 weeks. If there still isn't a change in her feeding then we will talk about getting Caydence a G tube, (This is a tube that goes directly into her stomach instead of down her nose then into her stomach).
I think the g-tube will be a better fit for Caydence since the ng tube is really bothering her lately. She wipes at it all day with her "mitten" and has been choking on it at least 3 times a day. I'm also thinking the ng tube is what may be causing her reflux since the stomach has to stay open a little to allow the ng tube in. There may be stomach acid seeping out up into her esophogus. That's just my opinion though...
The GI specialist also recommended that we get a pump for her feeding tube, so it doesn't take up so much time to feed her. And since we have to feed her every three hours, the pump can be programmed to run over night through multiple feedings while she is asleep. So maybe Josh and I will be able to get more sleep too! And the pump can be used for both an ng tube and g tube.
The order for the pump went in, so now we wait...
Tomorrow/today (It's late) is the Step UP for Down Syndrome Walk. Josh and I are very excited. We have raised sooo much money. I never imagined so many people would sponsor us! We really appreciate it a lot. I wanted to make a "Caring 4 Caydence" banner for the walk, but I don't know how to sew and wasn't sure how to go about it. So Josh and I made a wooden sign. Josh carved out the letters and I painted it. I haven't painted since college, so it was nice to be artsy again.
I'll post pics of the sign and the buttons I made in my next post which will be all about our walk. I'll be sure to take lotsa pics :)
Here's some pics of Caydence in her Panda outfit...
Tonight Josh sat Caydence up on his lap and she was holding her head really good. So of course I had to take a pic! I love her little cowlick <3
That's all for now <3
Stay Tuned :)
Posted by Jenny at 1:16 AM