Tyler Bailey

hi Laura-
Just checking in to see how you all are doing. You are an inspiration to me and think of you often especially when I am not handling Braden's challenges well- I think about how you have faced all of the challenges with Tyler.
blessings to you
Lori
lucky mom blessed with triplets
www.caringbridge.org/visit/bradenwild

Read your article in Oley newsletter. You are correct not to let anyone else acccess your son's line. I'm a nurse also and have maintained myself on TPN for 40 yrs. The sterile tech. of our fellow nurses is really bad. It is not to late to teach your husband. He is not stupid and there will be a day when you get sick or hurt and can not do for your son. Slowly start talk to youyr husband about how you do everything- remember he will not be hindered by previously learned bad habits like nurses. Start talking.

GOD BLESS THIS BEAUTIFUL BOY and wonderful dog This is beautiful story of life and how we should handle situations that come to us in our life that are out of our control Beautiful family

Hi! Fantastic article in the Lifeline Letter. I have a daughter, Alexis, age 16, with a form of Hirschprungs Disease, which she has been dealing with since birth. She is on TPN, 2500 calories per day, which is infused every night over 10 hours. I would love to share different stories with you, as I think I am very much like you in the way our child has been cared for in hospitals throughout the years!!! We have had stories, similar to yours, quite often in hospitals! I am glad to see that Tyler is doing well, and he looks to really enjoy his buddie! We too have a dog that Alexis thoroughly enjoys, but probably is half the size!!! I look forward to sharing e-mails with you. Have a great day!

I sometimes retreive long,lost mail from my mums house.It usually is the most current copy Oley LL news.Thats, when i came upon your special story.Those that are looking in....Will never know your challenges,unless they too have been given the important responsibility of raising,protecting such an extrodinary child.So keep connecting.
I so far have been given 33 yrs of Life with SBS...& enduring each day given to serve in Hlthcare as once was served onto me. Your story is full of strong determination & Love"......I believe your stern discipline,& even hardnose approach is key to the "Love" you have for Tyler & his success into the future......"I was introduced to the TPN world @ 10yrs old. 7yrs later....My family went thru everything from clots,infection,Peg tube feedings to No access.......Thru all this...."Even though uncomfortable at times......"My mum was hard nosed,stern and sometimes even seen as that "crazy mother".....
"As I reflect......She was never crazy!!!! Just determined to do the job given.....Love me!
I pray.You both stay strong,Kevin

Hello Laura!
this is Catherine, the gal you met on the beach here in Papkea, Maui. It was clearly our pleasure to meet you yesterday and to have you take photo's of our children. We are so excited about the pics!!. My husband woke up this morning and said he could hardly wait to see them again. I hope you had a wonderful evening with your family . Hope to see you around again today.. we are off to explore today for the day.. back in the afternoon, our email is boecathe@sbcglobal.net , again, thank you for your offer to take photo's and share them with us. It is a joy to meet you and today I have learned a lot about you and your son. You are a beautiful parent to tirelessly provide for Tyler a life of love. blessings, catherine

Your boy is a little fighter isnt he! Im glad he appears to be doing better. I am from the UK. My little boy Finley, experienced a similar condition 4 weeks ago. He was diagnosed with meningococcal bacteria, Group A streptococcus, Septicaemia, septic shock and Meningitis. Our Childrens Hospital (Alder Hey), saved his life, and he is now recovering well, although, he now has 3 infarcts in his brain, which may lead to long term epilepsy.

The information you have provided here is amazing. I understand how frustrated you can become when your child is so ill. However, the consultants at Alder Hey where absolutely amazing, and where already aware of the lack of urine Finley was passing. Its weird because looking at the pics of your little boy, is identicle to what my little boy looked like when he on life support.

Again, thank you for this information, and I wish you and your family all the best for the future. What you have been through is dreadful, but it can only make Tyler stronger in the future.

all the best

Wesley

Our little boy has SBS from a maltwisted volvolus that was found when he was 2 months old. Visit my blog when you can. Thanks for all the info on your page. http://evwmom.blogspot.com/

hi i have been training service dog for a new service dog program called small paws helpers i got my first service dog from there.