Tuesday, September 29, 2009

Step UP for Down Syndrome TV Spot

Andrea Wipperfurth, Executive Director of the Madison Area Down Syndrome Society (MADSS) did a TV spot on Channel 15 last night promoting MADSS and the Step UP for Down Syndrome Walk. Way to go Andrea!

Getting closer to a resolution...

Last Thursday we had an appointment with a cardiac nurse practitioner at the Children's Hospital. As I said in the previous post, Caydence couldn't get in to see her new cardiologist until mid October, so they wanted her to come in and get checked out before then.

The nurse we met with was very nice and took her time with us and checking Caydence over. We voiced our concerns about her feeding tube and so she called up at speech therapist to the room to take a also take a look at her. The speech therapist could tell Caydence was kinda disorganized in her sucking. And after talking for a bit, the nurse and therapist decided to schedule a swallow study for her.

Caydence coughs a lot and gags when she's eating. So the swallow study will check to see that her food is going down the way it should be. Another thought is, that she is gagging and coughing because of her feeding tube.

So this Thursday, we will be going to the hospital for her swallow study and also to get some blood work done since they haven't checked her levels since she was in the NICU.

I am a little concerned though; when the speech therapist called me to set up the appointment Friday, she said that Caydence needs to take about 20 swallows which will equal out to be about an ounce or roughly 30 mLs. This may be a problem since with her tube in Caydence usually only takes about 5 to 10 mLs and in the past 3 to 4 days she hasn't been taking anything by bottle.

So I don't know if they are gonna want us to take her tube out or what. If anything at least, the doctor's will see what a terrible eater she is and enforce them to find a better solution than her NG tube.

Obviously, I don't want Caydence to have to have surgery and have a feeding tube put in her stomach, but she isn't eating with the NG tube in. And when it's out she is eating so so much better! So maybe if she does get the G-tube put in, it will allow her to work on bottling better and she won't have that nasty NG tube taped to her face and going down her throat. I'll let you know how it goes.

Here's a cute pic of Caydence and Daddy:

Tuesday, September 22, 2009

To tube or not to tube... that is the question

Sunday night Josh and I made the executive decision to remove Caydence's NG tube. She's never really had the chance to get hungry since we're feeding her every 3 hours and since we've been having trouble with it, we wanted to see how she did without it. Maybe if she had the chance to get hungry, she would eat more and figure out that in order to satisfy her hunger she had to suck on the bottle.

Monday morning we went to see the specialist at the Waisman Center. Caydence weighed in at 8 lbs 4oz. She is in the 25th percentile for her weight and the 50th percentile for her height/length (this is according to the Down syndrome growth chart). Mr. Specialist thought that us experimenting without the feeding tube was a good thing. He was actually surprised that Caydence was still using the NG tube. By this point he said, her doctor should have determined whether or not Caydence still needed the NG tube or if she needed a G tube. He said NG tubes are usually only used for shorter periods of time since they are so uncomfortable for the patient.

The specialist suggested we keep the tube out for the day and see how she does. If she wasn't getting close to her target, which is 60 - 65 mLs per feeding, then we should put the tube back in. Caydence usually takes 5 - 10 mls by bottle and then the rest goes down her tube. When we got home from her appointment, she took 55mLs by bottle! It was the most ever!

Unfortunately, it didn't last. Although she ate more than she did with the tube in, it wasn't enough. After that 55 mL feeding, she averaged about 25 mLs. So Monday night, the tube went back in :( . It broke my heart to put it back in. She was so much happier without it.

Because I am having to quit my job, we are currently in the process of switching Caydence's doctors to another network since she will only be under Josh's insurance. We can't get in to see her new pediatrician and cardiologist until mid October, but the cardiologist wants her to come in and be seen by one of his nurses on Thursday to check her out.

We're going to talk to them about the possibility of a G tube. I've heard a lot of parents are really nervous about getting a G tube put in their child, but after it's over they wish they would have done it earlier. The surgery is minor and is very low risk. Right now I think it's our best option since the NG tube just isn't cutting it.

Other than the tube problems, Caydence is doing well. She had a chest x-ray last week and the doctor said it looked good. She started sucking on her pacifier more and is starting to turn towards sounds.

I've been trying to get a good picture of her smiling, but it seems they always turn out blurry...

Thursday, September 17, 2009

Tube Concerns

I am really getting discouraged with this whole tube feeding thing. You'd think after 3 months, I'd be used to it, but that is not the case. It just feels like she's never going to eat. I'm going to be tube feeding her until she's 30... Or at least until she can do it herself, I suppose. We always offer her the bottle before each feeding but 99% of the time, she won't take anything. The other 1% of the time, she'll take like 5 - 10 mLs.

Right now my main concern is with her pulling out her tube. We always have to keep her hands in mittens or socks unless we're really watching her closely. The tube has been bothering her more lately. In the past, she's pulled it out a little, but I was always able to maneuver it back in. But this past weekend, she was in her swing with some thin mittens on and she pulled it out completely and it seems now whenever she has her mittens off, she puts her finger up under her tube and tries to get it out.

I can't watch her every single second, so she wears socks on her hands. The drawback to this, is that I feel it is inhibiting her development (grasping, learning to use her hands, developing her sense of touch, etc.) I'm at a loss... It takes 2 people to change her tube out, so I don't know what I'd do if she took it out when I was alone with her. And it's not like we have an endless supply of them. They aren't cheap.

I'm just glad we are seeing a geneticist/pediatrician on Monday at the Weisman Center. He is supposed to specialize in children with disabilities. Hopefully he can help. Meanwhile, if there is anyone out there who is reading this, who has had similiar issues, please let me know.

Here is a pic of Caydence after pulling out her tube this past Sunday night. She was quite content and proud of herself!

The next picture is of Caydence, after we put the tube back in... Not so happy...

On a brighter note, our team "Caring 4 Caydence" has all together raised $1,395.00 for the Madison Area Down Syndrome Society's Step UP for Down Syndrome Walk next month. And we still have until October 10th! I'd like to thank all the people who have donated so far! There are SO many of you! It really means a lot to us, so THANK YOU!

Sunday, September 6, 2009

Step UP for Down Syndrome Walk!

Next month on October 10th, we will be participating in the Step UP for Down Syndrome Walk hosted by the Madison Area Down Syndrome Society (MADSS). It is basically the same as the Buddy Walk, which I'm sure is more familiar to you, but by MADSS forgoing the use of the "Buddy Walk" logo, it allows them to keep 100% of the proceeds local.

This year, the walk will be held on Willow Island at the Alliant Energy Center in Madison. Registration Opens at 9:30am and the Walk begins at 11:00am. There will also be a silent auction, bounce house, arts & crafts, music, food and more!

In support of Caydence and to raise awareness about Down Syndrome we are asking all of our friends and family to join us in this fundraising effort!

Please see our fundraising page at: http://www.firstgiving.com/caydence

To join the "Caring 4 Caydence" team on the day of the walk. You can click on the "Join this team" link on her fundraising page and you will be prompted to register.

You can also support us by sponsoring the Caring 4 Caydence Team. To make a donation, click on the "Sponsor me now" button on her fundraising page.

We are thinking of making "Caring 4 Caydence" buttons for our team and maybe a banner too! Please let me know if have any other fun ideas!

To learn more about the Madison Area Down Syndrome Society you can view their website at: www.madss.org