Our Miracle - Ryker's Journey with Heterotaxy

Our Miracle - Ryker's Journey with Heterotaxy

Monday, July 2, 2012

Update - Move - Boy's visit

Ryker has been doing great the last few days and when Ryker is doing great everyone else is happy :). The family got moved into their new apartment and the boys are on their way to visit!!! Please continue to pray for Ryker and that he will continue to do fantastic and that his family will be able to spend a lot of quality time ALL together while the boys are in town.

7/1/12 
Ryker had a great night!!! So often in the morning he wakes up screaming, which I believe has to do with the fear of all he has been through. :( But this morning I woke up to him wide awake just looking around his room & as he looked at me he gave me a little half smile :) Best way to start my day!!! Then to top it off- On Friday the nutrition team had said that if he didn't start gaining a minimum of 20grams per day by Monday they would have to have an "intervention" which didn't sound good. But at his weigh in yesterday morning he had gained 30grams & this morning he gained 50grams!!!! Talk about AMAZING morning!! HaPpY~DaNcE HaPpY~DaNcE!!! :)

7/2/12 
And.....The weigh in for this morning was 3.46kg this is +60grams from yesterday!!!!! YAHOO!! :) I couldn't be happier....okay maybe if Dr. DelNido came in & said Ryker's heart is perfect & there is no more surgeries needed you can go home now, then maybe I could be happier- BUT that's not going to happen, so I am going to run with this one! :D No Intervention today & I cannot wait to see the look on the nutrition teams faces after they see he gained 140grams in one weekend, when all they were expecting was 60! BTW- 3.46kg = 7lbs 6oz This is the biggest he has ever been! :) Yay Ryker!!!

They have moved into their new apartment and have received a warm and inviting welcome from their neighbors. We (Jason and Rachel's family) are so thankful and happy to know they are surrounded by a great environment and great people. They have had neighbors stop by to bring food, hook up their TV and other miscellaneous things that have helped them settle into their new home. Jason and Rachel made their decision to rent this specific apartment based on a 5-10 minute visit while not being in the best mind set and had been wondering if they made the right choice because of the distance from the hospital.  Once they walked in the front door again a weight had been lifted off their shoulders and they felt comfort in their decision. Thank you to Danny Miller for helping with the move and making it possible for them to get furniture for their apartment. Thank you to Sleepy's - The Mattress Professionals for donation the mattress set you see below. The girls were so excited to get their new mattress - they called me and were telling me how awesome their mattress was. :)
THE BOY'S ARE ON THEIR WAY TO BOSTON!!!! If you have not noticed yet Jason and Rachel would do anything for any one of their kids and their family is most important to them. It has been so hard for them to be away from their boys as much as they have but Jason, Rachel, Trett, Jadd, Addi and Bray have all been amazingly strong throughout this whole process. I am so happy to report that today Trett and Jadd are on their way to Boston, Ryker is doing well and they all get to be together in his room for the first time in months. Jason's status update yesterday.....
Tomorrow night is a long awaited time for us I can hardly wait in 24 hrs I will have my family all together in the same room for the first time in 4 months I have never been so excited.

***We want to make it happen that the family can go to Six Flags New England while the boys are visiting so if anyone has any connections on how we can get them discounted tickets please leave a comment or email tisha_weber@yahoo.com. THANK YOU



1 comment:

  1. I dont know anything about adavan...but just curious. Why do they ween from 12 hrs to 24 hrs on the dose? Seems so extreme. Can they just extend each dose? Give it at 13 hrs...then 14hrs..etc? Poor lil Ryker! Praying for you and your sweet family!

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