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Jul 09, 2009
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
How is Jedd Doing with out the tube
Hey Jessica!! How are you and Jedd going with out the tube?
Jul 09, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Awe, thanks for asking. He's doing really well. He had gone a little over a year without using it before everyone was comfortable with yanking it out.

He is starting to eat more table foods. He still will not really feed himself though, that's such a bummer. I have a 2.5 year old that I have to feed at every single meal. It gets old, fast. but, what can I do. He doesn't understand that yet. We will work on the soon and are working on it some now. He has little spoon control, but that's because most of what he eats off the spoon is very thin, like about pudding texture. So it falls off easily. He does decent with a fork though, so that is good.

The reason the self feeding stuff has fallen behind is we have really been pushing his picking up his "cup" and drinking on his own. So, other things have fallen to the wayside. Can only work on soo many things at one time KWIM

Since we cut out 1/2 of his CIB since the last GI visit, we have seen an increase in "snacking". I actually get to bring snacks with me in the diaper bag now and occasionally he will ask for something. It's the little things, right??? LOL He likes, Goldfish, Nilla Wafers, Mini Oreos, Chex cereal, all sorts of snacky type stuff. It's great.

We have really been pushing him to eat solid type, age appropriate foods. Yesterday he ate a 1/2 a PB and J for lunch and today it was Bologna and cheese slathered in Mayo. I use a Pizza Cutter to cut them into pieces for him.

He's painstakingly slow at eating solids, but he will only get faster when we give him more and more opportunities to eat solids. So, we roll with it.

He's made great strides with his oral eating. It is just amazing to see. We have truly been blessed. No way did we ever imagine he would be oral this early in his life. We had planned on by the age of 4 to be oral and remove the tube when he was 5 before Kindy. When I look back at his IFSP (infant IEPs for early intervention) it is just amazing to see in writing how far he has come.

Let Jedd be an inspiration to those of you on here who have kiddos that will only "dream feed" or struggle with oral feeds. It can be done, there is a light at the end of a tunnel, and it's not a train. I promise.

Jul 09, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Here's a Slideshow if his belly now!!
Jul 09, 2009
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
such a big strong boy! so happy for you.
Jul 09, 2009
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
you have no idea what an inspiration the two of you are. :)
Jul 09, 2009
helen lai
Mom to Matthew, 01/16/08, GERD baby, has been on Zantac since 2 mos. Aidan, his twin brother, no GERD. Max-ed out on Zantac at 1ml-3 times/day, and switched to Prevacid 15mg split tab 08/20/08. Switched again to 20mg Prilosec 09/18/08 due to Prevacid's restlessness/headache side effects. Reflux was out of control again and had to switch to 10mg Nexium 02/11/09. Good result so far.
What an amazing journey that you guys gone through! I'm so happy for you. Big congrats!!
Jul 09, 2009
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Wow! You guys are inspiration. You, my dear, are amazing. If your husband, family and Jedd have not thanked you and congratulated you for the amazing job you have done, let us be the first. Congrats!! Job well done! You have made it the top of Kilamanjaro!!!
Jul 09, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Thanks everyone. I will say, it really has been the hardest thing I have ever done in my life. I won't lie to you. But, it's been worth every single minute and I wouldn't trade it for the world.

Someone told me I should start a blog that chronicles what we do....LOL

In the back of my mind, I think it would be neat one to compile all the "blogs" that I have done on various places and put them all in a book in chronological order. It would make for an interesting read that's for sure.

Check with your
doctor first!