All Blog Posts (575)

I hope everyone has a wonderful Memorial Day weekend.  This is Bill and I's anniversary week too, so we will be visiting our family members who have moved on to much greener pastures, heaven.  It has been 16 years  since we lost our oldest son, Billy to a car accident when he was 9.  The anniversaries of his birth and death are, of course, really hard on the whole family, but Memorial Day weekend isn't so bad, because we get to celebrate the lives of many.  May you all be blessed with the…

Hello to all the aHUS families out there!

I know it's been a LONG time since I have been on here, but I have been very, VERY busy. I was hired as a Veterinary Technician at a veterinary clinic in Amherst NY on March 17th :) I am doing well, still getting the hang of things, and I am improving with each passing day.  I have become a part of the veterinary team, very quickly, despite my medical situation and my height; they don't judge me in that way. They have been willing to train me…

Anna just finished her 4th week Soliris treatment. She is been doing very well, less complains about headaches or any kinda pains (back, knee, tummy) and NO blood and protein in her urine. We start Soliris with her labs been good except her urine and we are glad even for this little thing that we don't need to worry. She will continue to get Soliris for about 6 mo. then we will make decision what will be our next step.

trying out the andriod, i'm not good with it as i actually know how to type and the one finger typing is annoying!

so we had nathan's kidney biopsied.  we were tickled to find out we could stay in general care as this is the section of the hospital built in this century!  a real bed not a chair and dvd player, not vhs, but of course we watched almost non stop river monsters.  the biopsy went fine, butnit was a good thing to have an anthesiologist and not just sedation as he…

Brody had chronic diarrhea for a couple months now. It was to the point that the poor kid was having accidents in his pants at least once a day. He just turned four by the way and has been potty trained for awhile now. We had been to the doctor a couple times and did all the necessary blood tests related to any food allergies ect. Everything came back fine but we took him off dairy just in case. Several weeks went by and no improvement. The doctor's suggestion was to make a "diary" of when…

Just realized that I havne't posted here in FOREVER!  Can't remember if I even put on here that Hyde was having a colonoscopy and Endoscopy a week or 2 ago?  Anyway - it was a result of on-going diarrhea after his virus back in January that landed us in the hospital for a week - here's the latest below.

Finally a chapter has closed in my life. I no longer have my colostomy and I truly miss it. Although it was a long process due to infection inside the incision luckily it wasn't as bad as the sergeants thought it would be. On March 26 my life came back to be what I've been wishing for , for approximately 6 months and i'm beyond glad God has gavin me the chance to see myself progress. It doesn't matter if i'm an a-typical HUS patient cause nobody said life would be easy , so as a normal…

Well, Nathan did respond to the dose of Cypro, however, his creatnine jumped again so it's time to biopsy the kidney.  Everything else looks good, (I got that oh oh feeling when his blood pressure sky rocketed earlier this week).   The thinking is the BK is in the kidney or because we've lowered the anti-rejection meds so much in response to the virus that he has a little rejection.  There is also the added interesting tid-bit that the kidney does not like prograf to begin with.  It also…

Today we had our much anticipated visit with neurology.  There were some indications via medical sources  that neuroloical conditions could improve after transplant and/or Soliris. 

Chorea was still evident but was called mild.  Medication could be given for it, but he'd been on it before, (Depakote), and it caused his blood levels to plummet so we are not going down that road.

In a year, provided there are no seizures, he will be given another EEG, if it is…

It is been crazzy here seems one thing after another. She had her ear surgery in December, then in January she started having back pains and blood and proteine in her urine. Then in February she had stomuch paint to the point she totally stoped eating doctors  diagnosed her with Lactose intolarance, telling me she cant have any dairy product and putting her on 3 different medications for it. I looked up on internet about Lactose intolarance and finding out Anna never had any of the simptoms…

Crazy March Madness here in Missouri again.  :)  Baseball started with a new team, kindergarten testing coming up and someone "forgot" to give us the permission to join the Jr. National Honor Society, (anyone want to bet he didn't want to stay after school any more?), not to mention this wonderful spring a month and a half early!  Bill is off tonight with the St. Louis Astronomical Society volunteering at one of St. Louis's premier children's hospital, St. Louis Children's...how cool is that…

My son Christian started his Soliris infusions in October of 2011. We had clinic in Houston, Tx. yesterday and his Doctor mentioned that he was seeing some unusual changes in his labs. When they did blood work on Christian a few months ago (in order to present him to transplant board) his antibodies were at 20%, last month labs showed his antibodies have gone up every month and he is now at 50% .  His platelet count had also gone down some.The only changes in his care has been the Soliris…

The last time I posted, I stated that I went to California for a few days. Well, hahaha I went on yet ANOTHER trip on March 4-9 to Rutland Massachusetts. Oh my gosh, this place was so beautiful! I stayed at a farm called Overlook Farm which helps the Heifer project. Heifer, for those who don't know is an organization that raises animals to be donated to families who are in need in other countries even here in the United States. These animals help the families produce materials that can help…

***quick addendum to our Carepage update below for anyone on here who's similar to us with t'plant along with Soliris therapy - want to see if anyone else has had similar 'odd' biopsy results?  The main thing (and I didn't put this on the carepage update) is that they found 'some damage' to the vessels in Hyde's/uncle Warren's kidney and our dr found this 'surprising' given how rock steady his creatinine, etc have been.  Hopefully it's normal t'plant stuff - but just want to know if anyone's…

Just a little update on Marissa, she is doing well and still in love with her horse Chief.  She is down to getting labs once every two months now, and doesn't even need me to sit beside her while she has her blood drawn anymore.  Yesterday my son, her older brother noticed that her eyes were pretty swollen and alerted me to this.  That was what got our attention when we were trying to put all the unusual symptoms together a couple years ago.  I took her in for labs again yesterday, even…

All is good with Ivette. She received good news yesterday. She has gained four pounds!!! So now weighing at 97, she's happy to add on some extra pounds and go back to wearing her clothes (before atypical hus episode). She got the green light from her doctor to go back to school! After two days of sitting outside the counselor's office she finally went back to the everyday routine. Her school has accommodated her with an elevator pass, she isn't obligated to participate in physical education,…