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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Friday, May 4, 2007

The Next step

When I got up to the hospital today, what a suprise to find an awake, happy little boy. He is doing well today. He got his NJ tube(feeding tube) and they started him on breast milk today. Just 1 cc and hour for 12 hours to see how his gut will tolerate it. He also had his Folly cath out today, and believe it or not they want to see of he is ready to go off the vent tonight or tomorrow. He is hardly using it right now. They have taken him off most of the "Rocket Fuel" as Dr. Arington calls it, hard meds. He is just making great steps. Ryleigh is at another friends house today and seems to be okay as long as mom or dad comes to get her. She has reverted a little on her potty training but she will be okay it is not the end of the world. Thanks again to everyone who brought over frozen dinners. It has been so nice not worrying about one more thing. We have really been taken care of.

11 comments:

Anonymous said...

That is so wonderful! I hope his recovery continues to go well. Your positive attitude has to be helping him to feel better everyday. Thank you for the updates. If there is anything at all we can do just let me know.

Joni

Steve and Linda said...

YIPPEE!!! That is just one of many milestones that Alex has accomplished. We are so happy to hear such good news. What a JOY it was to see Alex awake. Thanks to Grandpa Homer too for keeping us up on his recovery as well. We LOVE YA A LOTS! Bring Ryleigh over whenever you need.

Paulene said...

What an incredable journey this has been. I have been humbled with the overwelming love and support from so many people. I would like to thank Brynn and Jeffs Ward for all they have done for their family. You have been so amazing. I am soooo.... grateful for you. And to Jenilynn and Eric, you are my newest Hero's. Everyone needs a Jenilynn and Eric in their life. Brynn and Jeff are so lucky to have met you at this time of their lives. You have done more for them than you will ever know. On a lighter note I need to share
" a Ryleigh" with you. Most of you know she is a little smarty pants, I asked her to say the blessing on the food and of course she said yes. I was helping her and she was not really paying attention because she was taking drinks from her sippy cup. I said " Please bless the food to help our body's be strong and healthy". She said "Bless the food to make our bums feel happy". I could barely finish the prayer and she couldn't figure out why I had lost it. I love these memories we are sharing with her at this time. She will be a great help when Alex gets to come home. This is just suppose to be a comment, so I better sign off for now. Brynn, Jeff, Ryleigh and bady Alex, I am so proud of the way you have handled this challenge, I Love you, Grandma Clawson

Quinney Family said...

Each day is a blessing from above and we are so excited for Alex and his strength and progress. We truly believe that these heart kids are special gifts and preordained to serve a very special purpose. Way to go Alex!!

Eric Q

Alisha, Ryan & Grace said...

Yeah Alex!!Congrats on the feeding tube and having such a great day! Go Alex our little fighter! We think of you often and are cheering for you guys(can you hear us?)!!!!Gracie loves to look at his photos."I'ts my baby Alex" she says.Love you much!

Anonymous said...

I am so happy to hear how well things are going. I have been thinking of your sweet family alot! You guys are amazing! Anytime you talk about Ry saying something I can totally hear her, she is soooo cute. What a fighter Alex is! I really want to come home and give loves and hugs and see this sweet little guy! Love you guys -- Nicoley

Mike and Rebecca said...

Jeff it was good to see ya again,I'm glad everything is going so well. My family prays for the very best for Alex and his speedy recovery.If there is anything we can do to help you let us know! These small steps in recovery are huge on your way to going home soon.......

Anonymous said...

What a little fighter Alex is. I am so amazed with the strength you guys have. We are so greatful things are going as well as they are. We will keep you in our prayers. We love you guys.
Love,JJ

Kris & Amy Morris said...

Hi Jeff! Julie Cook sent me your blogspot & what a tear jerker it was to read what your family & your little guy have been going through. You guys are amazing! Our prayers & thoughts are with you & your family & it seems like you guys have a great attitude. I hear news about you & your wife through your parents sometimes since they are in my parents' ward. Its nice to know how things are going with your family. I hope Alex continues to get stronger & better. Your wife seems like an amazing person to go through all of this & be so positive. Take care & if you want to see my family you can go to krisamymorris.blogspot.com
Take care,
Amy Morris (Ferrin)

sstar said...

I think that's the funniest thing that there's a mystery blogger! What a laugh! He/she does care - you can see that. :)
I just barely found the internet download capacity to get on and see your super perfect baby boy. How cute is he! So sweet. I can't believe all you 4 have been through. What a life! I love reading about it and I am so excited he is so awesome! Good for him. With so many prayers and his "crap attitude" he's just the greatest! I'm glad you guys are so blessed to have this, but Brynn, I can't quite say I envy you. :) I think this setup was built for you. A blessing I would not wear so well and elegantly as you 4 do. Congrats and Love!
Est

Anonymous said...

To clarify, the posts signed "J" or Joni are all from me. I'm sorry if it didn't make sense before. Thank you for sharing your experience with all of us! I hope things are still going well. Your strength is inspiring!!

Hugs and warm wishes,
Joni Nadauld