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lisa ann peterson
- Female
- Okanogan, WA
- United States
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lisa ann peterson's Discussions
ssi
6 Replies
Started this discussion. Last reply by KaTrina Slaughter Sep. 17, 2009.
lisa ann peterson's Events
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All good news - wishing you the best with everything! As soon as anything official is released by Alexion regarding the pediactric trials, we hope to post the info here.
lil miss had her check up on wed and well the kidney function is better whoop whoop... her blood pressure is 119/78 and her hemoglobin is 10.6 and her hematocrit is 27 and her platlets are 220 and her albumin is 3.4.. we also found out that the prot…
Thanks, Lisa - it's great that you're coordinating this fundraiser for The Foundation for Children with Atypical HUS. "We'll keep pitching together to find a cure!"
the blood mobile wasnt there this time.. we only got 63 donors but thats alright there is a next time
tuff hat tournement at okanoan wa sports plex
September 25, 2010 to September 26, 2010
coed softball tournement to help raise money for ahus all monies will go to the foundation of ahus.. the 25-26th of sept at the sports complex in okanogan wa the price for a team is 250.. there will also be tuff hat t-shirts for sale at the tourneme…
Best wishes for 100 donors tomorrow at Chloe's blood drive- she's the cutest spokesperson anyone could want !!! Will the 'Chloe bus' be the bloodmobile for the event?
the only advice i can give is pray and when you think god isnt listning he is... iam so sorry to hear of your news about lil ben..i know that these kids are fighters and that miracles can happen my daughter is proof of that.. when they thought that…
thanks for the update.. i have not been able to get your lil guy off my mind i pray that he pulls through all of this.praying for better days and healing.. god bless
It's great to hear she's feeling better and that the labs show it also! She might get some comfort for the belly aches by using a hot water bottle or cold water bottle-when Nathan had them so often, we never knew if he would ask for warmth or cold,…
Glad to know that Chloe's labwork looks good in so many areas. I know what you mean by the 'medication shuffle' - there's a lot of comfort to be had in a status quo routine of familiar medications and dosages. It got so complicated trying to keep Hu…
lil miss went to the doc on wed... her hemoglobin and hematocrit are back up sooo yeas are in order there.. her creatnin is sittin higher than it was before she got that last cold its only .67 at and before the cold it was perfect .45 to be exact so…
hi jenny,
iam so sorry your family is hurting right now and that dear lil benjamin is struggling with AHUS.. when my lil miss was in the hospital for 2 1/2 months i slept by her side and cried while she slept praying that she was still with me the n…
Thinking of you and your princess and praying no news is good news.
so sorry that this awful disease took your beautiful boy... i will be praying that god give you strength and guidence...
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Comment Wall (27 comments)
- At 5:00pm on July 4, 2010,
Grace said…
- Thinking of you & hoping Chloe's feeling well enough to have some fun. Fingers crossed for Tuesday and beyond.
- At 12:22am on July 4, 2010,
Jodi Kayler said… - Hope you guys are hanging in there. I hope Chloe has better labs on Tuesday. =( Let us know. Happy 4th! -The Kaylers
- At 10:56pm on May 25, 2010,
Wendy Flinn said… - Chloe is adorable and she looks happy. Glad to hear you got SSI it helps alot, especially the medicaid. We save more a month just from having the medicaid cover all copays than the actual SSI payment.
- At 1:27pm on February 15, 2010,
Jodi Kayler said…
- What day is Chloe's appointment this week? Coen will be there Wed.
- At 11:34pm on February 14, 2010,
Linda Burke said…
- Hey you! Hope you had a fabulous turnout at Chloe's blood drive on Saturday - thanks for your role in supporting Omak's folks with donating blood, offering the gift of life to others.
When you're not too busy with spinning class, give us an update please on both Chloe's blood drive and on your fitness challenge!
- At 7:52am on February 10, 2010,
Heather Still said… - Hey there....just looking for a Chloe update. I know she was going to the doc and was puffy/congested. Hoping all is okay :)
- At 8:27am on February 6, 2010,
Heather Still said…
- Glad she's feeling better....what a relief for you :)
- At 8:05am on February 5, 2010,
Heather Still said…
- Hope Chloe is doing okay. I fear the worst everytime Ryan gets a stomach bug. Hope that's all that's going on with her. Thinking of you :)
- At 9:44am on January 18, 2010,
Jodi Kayler said…
- Whoohoo!
- At 1:32pm on December 18, 2009,
KaTrina Slaughter said… - Hi,
Love the pics and music!! How did you do that?? I'll have to steal that. :)
Anyway, they are wanting us to go to Washington University Hospital, in St. Louis. They are suppose to be a teaching hospital, with a huge Children's Hospital attached. :) I think Cheryl thought it was in Washington because of the name. :) I love your little girl, so precious. I'll have to read her story. Did you not love the Make a Wish trip to Disney?? When did you go? We took Syd last March when she turned 3. :)
Profile Information
- Birthday
- October 8
- Do you have a friend or family member diagnosed with aHUS?
- Yes
- Are you medical personnel or a researcher with an interest in aHUS issues?
- No
- My child ( or myself as a patient) is best described as:
- Factor H (CFH) /Protein (Gene)
Lisa ann peterson's Blog
lil miss chloe
lil miss had her check up on wed and well the kidney function is better whoop whoop... her blood pressure is 119/78 and her hemoglobin is 10.6 and her hematocrit is 27 and her platlets are 220 and her albumin is 3.4.. we also found out that the protocol for solaris is supposed to be approved in november i dont know much more but that hopefully by the end of the year she can do the study but she has to relapse first.. i keep hearing diff dates but dr. h said that it should be approved by… Continue
Posted on August 27, 2010 at 11:48am — 1 Comment
lil miss chloe
lil miss went to the doc on wed... her hemoglobin and hematocrit are back up sooo yeas are in order there.. her creatnin is sittin higher than it was before she got that last cold its only .67 at and before the cold it was perfect .45 to be exact so iam not quite sure what to think i know its not terriblly high but its more than it was before the cold and but its lower than it was during the cold.. so i was excited that she looks phenominal and is drinking and peeing.. but doctor H called and
… ContinuePosted on July 23, 2010 at 10:59pm — 2 Comments
lil miss chloe hospital stay
well chloe had not been ffeeling well all week she had been running a fever of 103.6 and we could not get it to break we monitored her closely at home with labs and mom.. but her labs got worse her creatnin got higher and she was dehydrated and her hemoglobin and hematocrit got lower and so did her albumin.. so we ended up at the hospital for 2 days and now we will again go back on monday to ensure no relapse is presenting its lil ugly head. we are hopeful that this viral bug that took the spunk… Continue
Posted on July 7, 2010 at 10:52pm — 5 Comments
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 2010 genetic testing and treatment.
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 2010 genetic testing and treatment.
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.
more factoids...
• • • • • • • • • • • •
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.
more factoids...
Help us fight the battle
Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.
Or you can donate a specific dollar amount-every dollar will help the Foundation for Children with atypical HUS atypicalHUS.50megs.com
Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Foundation for Children with Atypical HUS may be mailed to:
Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
For pearl bracelet orders, please allow extra time for processing checks.
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