Elyse: 12/1/08

Monday, December 29, 2008

terrible nights!!!

I want to kill my perfect child!

She cried all night! I have no idea why. She also cried the night before! I thought, hm... maybe she is over stimulated. She slept over grandma's house two nights in a row (her first sleep over, not counting the hospital stays). Maybe her schedule is off... last night i thought would be better. I even thought she was constipated, but that wasn't it.

Now i'm tired. Very tired and of course now she sleeps. Don't you hate that!

I'm late for work and I'm going to be feeling like crap.

I hope she's not hurting somewhere inside.

a few new toys

Elyse is very happy with her new girl car and writing thing (forgot what it's called) even though as you can see in the middle picture... she found another use for it.

Friday, December 19, 2008

GI update!!!

Whoo woo!

No more prevacid!

Best of all, they are happy with her weight, so

we can stop tube feeding her milk!!!

Water we can still give because she still needs between 30-34 oz of fluid daily.

The nutritionist said that she's in the 50 percentile for her height (not for her age).

The goal is to continue giving her 16-18 oz of pediasure by mouth plus her meals. We won't worry if she doesn't drink it all. BUT if we notice her weight starts to drop, then we will have to tube feed her at night.

We return in three months and discuss the possibility of taking out the tube (if she does well without using it)

Friday, December 12, 2008

HELP US! Do this for Elyse and the rest of the children with PHACE Syndrome.

PLEASE HELP US & SIGN THE PETITION, WE ARE TRYING TO GET FUNDING TO DO RESEARCH.

The Hemangioma Investigators Group has formed a consortium to address the need for research into vascular anomalies and PHACE Syndrome. This petition is in reference to RFA for the Vascular Anomalies Rare Disease Clinical Research Network

As a community of patients and families and friends who are living with vascular anomalies/PHACE Syndrome we are appealing to you to consider this application favorably. There is much to be learned about these diseases and the only way that will be accomplished is through research and trials.

While vascular anomalies are not new, the diagnosis of PHACE Syndrome was first reported in 1996. PHACE Syndrome is a rare disorder that requires the collaboration of medical disciplines including, cardiology, dermatology, hematology, oncology neurology, radiology, and surgery. There is a wide spectrum of symptoms and complications involved in vascular anomalies/PHACE Syndrome. PHACE Syndrome and the entire spectrum of vascular anomalies have been inappropriately diagnosed and managed due to an inability of the medical disciplines to collaborate on diagnosis and treatment.

Since the first reports of PHACE Syndrome appeared in the literature, there has been an increased interest by physicians and scientist. Medical Institutions across the country have recognized the need for multidisciplinary teams to manage patients and have supported research targeted at developing treatments. Unfortunately there is no funding for vascular anomaly research. The lack of funding for vascular anomalies has limited research and this is directly affecting how the growing number of diagnosed patients are managed each year. Patients and families are left with little information or understanding of the long term implications and treatments of PHACE Syndrome and other vascular anomalies.

NIH Funding for the proposed consortium would help provide desperately needed knowledge and understanding to disorders filled with so many unknowns. Our hope is that by finding solutions to complex vascular anomalies like PHACE Syndrome, there will be applicable treatments and insight into the more common vascular anomalies like hemangioma and vascular malformations.

Our patient/family led groups as well as patient advocacy organizations have been pleased with the representation within this consortium. There are doctors from many different specialties and many different medical institutions working together for one common goal. These dedicated researchers and scientists have been involved in every aspect of managing vascular anomalies/PHACE syndrome and are committed to moving forward. They have created an innovative proposal and our groups enthusiastically approve of their efforts.

By signing this petition we, as a community of patients, family members and friends show our support for requested funding by the NIH.

http://www.petitiononline.com/NOVA2009/petition-sign.html