Jack’s Pack Weekly Update

Happy Wednesday! There are 59 days until the walk!  We have our final design and we are ready to start placing orders for Jack’s Pack shirts.

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The price for shirts this year is $12. 50% of sales go directly to the March of Dimes!  Sizes available include:
Youth XS-XL and Adult S-3XL

To order a shirt, please email me at AbbiPena@yahoo.com or Maggi at Maggi.Campbell@gmail.com

If you do not live in the Lafayette or Alexandria/Frankton area, we will be able to ship your order.

We would like your payment at the time of order. You can either send your payment in the mail  or pay via PayPal. I’m working on a button that will be on the blog. Until then, you can go to PayPal and my account is AbbiPena@yahoo.com

Don’t forget to sign up for the walk too! You can do that here. Even if you can’t make the walk, you can join our team and help with fundraising!

 A BIG THANKS to Sue Scott for registering after last week’s post!

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We need you, Jack’s Pack!

Attention Jacks’s Pack: The walk is just 65 days away!  I plan to update each week with how we are doing and hopefully will recruit more of you to join along the way! I do have a few updates to share:

Shirts– 2013 Jack’s Pack shirts are in the design phase. We know we will stick with the same logo, but will have a new look for this year. A very nice man who works with Maggi is helping us again this year. We can’t wait to see what he comes up with. We will let you know as soon as ordering begins. Last year shirts were our biggest fundraiser and we hope to do the same this year!

Chik Fil A (or Chik La Fe, as Kendrick calls it)- Mark your calendars now for April 1. Don’t be a fool and come eat some chicken with Jack’s Pack! On April 1st from 5-8pm we will be hosting a spirit night at the Lafayette Chik Fil A. All you have to do is come, eat, and drop your receipt in our box. A portion of the sales will go to our team! 

What else can you do?– Sign up now to walk with us on April 27 by clicking here. Ask your friends and family to join us and donate. Ask your employer if they match donations. Let us know if you have any fundraising ideas!

Remember, Jack is the ambassador this year for the Lafayette walk and it’s the 75th anniversary of the March of Dimes. It means so much to our family to give to this great organization. Because of the March of Dimes and their research and developments of care in the NICU we have Jack.

One last piece of news…. Mr. Jack was discharge from physical therapy today! Wooo Hooo! I can’t wait to see him walk on April 27th! We hope you will join us!

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Here is Jack crawling after the walk last year!

Feeding Tube Awareness Week 2013

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Last February, we celebrated Feeding Tube Awareness Week with our post here

Here is a partial excerpt from the original post:

After Jack had surgery to repair his hypospadias on November 10, he had trouble breathing and was admitted to the PICU at Riley Children’s Hospital.  There wasn’t much improvement in the days following surgery and he then began showing some other symptoms with his belly. On Monday, November 14, Jack went back to surgery and they found he had a perforation is his duodenum.  The recovery from this surgery was very slow as Jack’s stomach was not working.  After weeks of TPN nutrition (through his veins), Jack had a G-J Tube placed. We were grateful for the tube to provide nutrition for Jack and also allow us to bring him home for his 1st birthday and Christmas.

Jack had his feeding tube for around 7 months. Jack progressed very quickly from continuous jejunal feedings to just needing additional feedings at night. Around March, he was able to take everything orally. After 3 moths of not using the tube and proving he could gain (some) weight, we were able to have the tube removed. You can read about that here and here!

Looking back on the last year, it has definitely been an adventure. While Jack progressed from the feeding tube, we have still had many struggles. When Jack went in for his surgery in November of 2011, he was getting all of his nutrition from a bottle. When we weaned him from the feeding tube, Jack went back to taking his formula from a bottle. We had attempted some solids before surgery and Jack wasn’t interested, so we didn’t push it.

We began seeing a feeding team at St. Elizabeth around March of 2012. They gave us some ideas on introducing solids and helped with his caloric needs. We saw the feeding team monthly through the spring. At one point, we began cutting back on his formula to make him more hungry. This didn’t work and he lost weight. While we did make some progress during this time, it felt like we weren’t heading in the right direction.

In September of 2012, we visited the feeding team at Riley. We came home with TONS of new information, recipes and rules. In September, Jack was getting most of his calories from a bottle and swallowed very little food. We learned he had very weak oral motor skills and couldn’t chew well enough to swallow most foods.

Since September, we have been very faithful to his feeding plan, increased his occupational therapy to once a week to help with feeding and put in a LOT of hard work. When we saw the feeding team at Riley in January, they were VERY pleased with his progress. We had instructions to stick with the plan and we also started a new drug, cyproheptadine, which is an appetite stimulant.

Since Jack’s January 3rd appointment, we are pretty much bottle free! He is drinking all of his high calorie milk from a cup with a straw AND he has gained over 1 whole pound. Jack tells me he is hungry, is willing to try most foods and we couldn’t be more proud! We still have work to do on his amounts of foods and being consistent, but WOW! The appetite stimulant was certainly the push we needed. 

So, while Jack no longer has a feeding tube, we still want to do our part to share awareness for tube feeding. I believe Tube Feeding Awareness Week also brings light to feeding difficulties in general. Eating is something most of us take for granted. Of all of Jack’s complications from prematurity, this has most certainly been the most stressful.

Happy Feeding Tube Awareness Week and Keep up the good work, Jack!

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Jack’s Pack!

It’s that time of year again! Mark your calendars, the Lafayette March for Babies will be Saturday, April 27.

This year is special for a couple of reasons. Number one, this is the 75Th anniversary for the March of Dimes. 75 years!  This adds up to 75 years of research, education, vaccines, and numerous benefits to every baby born.

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Number two, Mr. Jack himself is one of the ambassadors for the walk. You  might remember that Jack was also an ambassador for the Signature Chef’s Auction last year. We made a video that will also be used for the walk. If you haven’t seen it, please check it out here. Jack’s picture and story is also on the walker envelopes.

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In honor of 75 years for the March of Dimes and of course, Jack…. WE NEED YOU!

We need you to register and walk with our team. We need you to please donate and help give every baby a healthy start to life. Last year, Jack’s Pack raised over $4.000 and won awards for the top family team and top new team. We want to exceed that this year! Every little bit helps and remember, your donation is tax-deductible.

We will be selling Jack’s Pack shirts again this year and we will communicate when you can begin to order.

But, for now please register and join our team! You can do so by clicking on this link:

http://www.marchforbabies.org/team/t1846927

We are working on some other fundraising ideas including a Spirit Night at Chick Fil A. If you have any great ideas, please let us know.

Thank You,

Henry, Abbi, KP & Jack