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Cheryl Biermann commented on Wendy Flinn's blog post 'T-Bone Flinn'

Tristan is a trooper! Wonderful news, thank you for sharing!

Sep 17, 2011

Dana M Simone commented on Wendy Flinn's blog post 'T-Bone Flinn'

I hope things continue to go so well and that Tristan enjoys a great year of pre-school!

Sep 16, 2011

T-Bone Flinn

Tristan had a great checkup with Dr. Nester last week. His BP's have been perfect, labs looked great, K+ is staying normal even without kaexalayte. Protein has come down a lot in his urine too thanks to Lisinopril. He grew a little over the summer :) I was very proud of him when he sat all by himself and had his labs drawn, all I had to do was hold his hand. Then of course he covered himself in stickers to make the owee better. We call it arm pokey. He knows what to expect now and doesn't freak…See More

Blog post by Wendy Flinn Sep 16, 2011

2 Comments

2011 Parent Conference at University of Iowa

October 7, 2011 at 6pm to October 9, 2011 at 7pm

SAVE THE DATE:The University of Iowa has graciously volunteered to host the 3rd "Atypical HUS Parent Conference" . This is a great way to meet the top medical Professionals while socializing with parents at the same time. Here are the specifics:Friday, Oct 7th Early Arrival 7:00pm Meet and Greet Dinner sponsored by the FoundationSaturday, Oct 8th The Confererence at the University of Iowa: (All Meals Provided)Sunday, Oct 9th …See More

Wendy Flinn is attending Bill Biermann's event Jul 1, 2011

13 Comments

Wendy Flinn commented on Cheryl Biermann's blog post 'Who Us? Are your sure???'

Yay!! We are so happy for you all! We'll keep you in our prayers, so exciting :)

Jun 4, 2011

Wendy Flinn commented on Donna Kolp's blog post 'Milestones...'

Congratulations to your son! May he have a fulfilling and successful future with whatever he chooses to do.

Jun 4, 2011

Wendy Flinn commented on Cheryl Biermann's blog post 'Suggestions from the National Kidney Foundation about traveling with kidney disease'

We are flying to California to visit my brother this summer. All of Tristan's meds are liquid and I was going to carry them on. Will they let me take them since they are so picky about liquids on flights now? All of the bottles have…

Jun 4, 2011

Wendy Flinn commented on Bill Biermann's blog post 'Eculizimab and Neurology - Amazing !!'

This is wonderful. Gives me a lot of relief. My little man was so lucky to get his motor skills and vision back. We had no idea how well he would recover. Yes people need their kidney's but we need our brains more and I am so relieved that this…

Jun 4, 2011

Wendy Flinn commented on Amy Swarbrick's blog post 'Brody'

We are going on a year and a half now with no recurrance. Tristan has only had it once but it was very severe when he did. His trigger was either strep or vaccines or both, we'll never know which. We see the nephrologist…

Mar 29, 2011

Wendy Flinn commented on Phyllis Ann Talbot's blog post 'We are home - for now'

It's so awesome your home. It's wonderful to hear how much energy Hyde has. I bet he's so happy. Congratulations and best wishes for the future. Yay!!

Feb 18, 2011

Mary Lee Neuberger and Wendy Flinn are now friends Dec 17, 2010

Kerri Grey left a comment for Wendy Flinn

Hi Wendy, Merry Christmas to you and your family!!! I hope things are going well for you all

Dec 16, 2010

Jessica Olivia Frysz left a comment for Wendy Flinn

Thanks Wendy, Happy Holidays to you and your family ! Also, have a happy and healthy New Year!

Dec 16, 2010

Photos posted by Wendy Flinn Dec 16, 2010

Wendy Flinn commented on Phyllis Ann Talbot's blog post 'Make a Wish and Give Kids the World'

It sound like you guys had a blast. That is really awesome that they already had all your pd fluids ready for you when you got there. I couldn't imagine having to travel with all that equipment. Happy Holidays to all of you :)

Dec 16, 2010

Profile Information

Birthday: December 28

Do you have a friend or family member diagnosed with aHUS?: Yes

Are you medical personnel or an aHUS researcher with an interest in aHUS issues?: No

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Wendy Flinn's Blog

T-Bone Flinn

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Posted on September 16, 2011 at 5:01pm — 2 Comments

update

Woohoo! Guess what? We only have to have kidney doc checkups every 6 months now! Tristan weighs a beefy 40 lbs now at 2 1/2 years. He's a tank. He's starting to swallow certain foods. Especially goldfish crackers. But now we have to follow a pretty strict renal diet as he progresses with his eating. We are starting to wean him off of his tube feedings too. So far he's been replacing the bolus we took away. But he is still super picky about his food.

We have to eyepatch his good eye…

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Posted on October 6, 2010 at 9:30am — 3 Comments

Checkups

My little guy had his kidney checkup last week. He's doing really well, labs look great for him, he's grown since we were there last. She was really happy with how he's doing. Tristan still has a lot of tummy issues so we just started him on a probiotic for kids. It's already helping his tummy. I'm really curious to see if I'll see an improvment in how often he gets sick since it's supposed to strengthen your immune system. Tristan's speech has really improved lately too. He's talking up a… Continue

Posted on July 4, 2010 at 7:23pm — 4 Comments

Tristan's Story

I just found this site on the net and joined recently and thought I would introduce my son. His name is Tristan and last August when he was 18 months i took him to the dr. for his 18 month wellness checkup. He recieved his vaccines that day which included his mmr and varivax. He wasn't sick that day and he'd been perfectly healthy before. But later that day he started having diarrhea which worsened as the week went on. I took him back to the dr where we were told he just had a virus. He started… Continue

Posted on May 16, 2010 at 11:34am — 4 Comments

Comment Wall (6 comments)

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At 5:08pm on December 16, 2010, Kerri Grey said…: Hi Wendy, Merry Christmas to you and your family!!! I hope things are going well for you all

At 4:42pm on December 16, 2010, Jessica Olivia Frysz said…: Thanks Wendy, Happy Holidays to you and your family ! Also, have a happy and healthy New Year!

At 9:32pm on May 26, 2010, Kerri Grey said…: Hi Wendy,
Thanks for your kind remarks. Ashley does have very blue eyes - everyone falls in love with his eyes. I havent as yet had a fundraiser but am still in the process of organising one. I have never done anything like this before and i keep come up against alot obstacles and red tape. I am very passionate about doing it though but i want to make sure that it is right, so if that means it takes me 2 years to organise then so be it and hopefully 2nd time around i will know what im doing and it wont take so long. It is hard trying to explain this condition to people because it is so hard to understand, to people that i dont know very well i usually just say my son has kidney failure, i dont know about others but i get sick of talking about it to people that dont understand. I hope your son is doing well and he too is absolutely beautiful - such a gorgeous smile. Thanks for message and im sure we will be able to keep up to date with what is happening to each others little boys through this wonderful site.

Kerri

At 9:20am on May 20, 2010, Melissa Hearn said…: Sounds about right. We had a similar situation where the docs wouldn't say for sure, but also couldn't come with any other possibility for how he got sick in the 1st place.

Yes I feel very lucky that we were able to try Soliris on Bryan & that it is working!

I wish lots of luck to your sweet little boy & to your family. Let me know if you need anything. I'm so glad you found this site.

At 8:52pm on May 16, 2010, Svetlana Finley said…: Welcome to our site!!!! Thanks for sharing your story, i am so happy that u found this site ;-)

At 12:09am on May 11, 2010, Linda Burke said…: Welcome to the interactive site for The Foundation for Children with Atypical HUS, where we share information, inspiration, and insight into this rare disorder. Feel free to explore the topics, and let us know of any questions you may have.

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WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!

The Foundation for Children with Atypical HUS encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.

Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.

NEW DIAGNOSIS OF aHUS?
Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "About aHUS" tab at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.

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Did you know...

CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.

• • • • • • • • • • • •

It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.

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