She slept!

Ahhh... priceless

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.

xmas with family

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)

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

Torturing Boo Boo

Cousin Ethan sleeps over

From Collages

From Collages

Grandmas xmas tree

Cousin Erin

 

 

 

Look a Teletubby!

 

 

 

BOO BOO

STOMACH BUG

Elyse got a stomach bug. She doesn't want to take anything by mouth. Not even yogurt which is her favorite. i'm having to tube feed her 2oz pedialyte every hour. In a bit i'm going to try to blend some banana and try rice later. I hope i can get it thin enough to pass through her tube.

My poor mamas. She has been very good (behavior wise). She's been laying all day in her crib. She only complains when i pick her up to change her. I think her stomach is sore. I've also been washing all day. Each time she poops, it runs out. This morning she threw up three times.

Friday lab results were normal. I'm upset because someone forgot to check for the thyroid levels. Her pediatrician might of forgotten or the nurse who wrote them. Of well. At least everything else is ok.

We did take her to the ER after her lab work. We figured since we were there, we would take her to the urgent care. i should of known better. with her medical history, they put us in the ER instead. Big waste of time of course. 3 hour wait. They only tested her tube to make sure it was working properly, then they sent us home and yea. that took three hours.

tomorrow her pediatrician comes back from vacation and she said she would call me. well see how elyse is doing.

we are lucky that right now she has no fever.

worried

i'm beginning to worry about elyse. this week, she has not been herself. she looks very tired. her left eye isn't focusing (meaning it's wandering more). her eyelids are red and swollen looking. not eating as well. not urinating much. yet no fever and even though she is a little more whinny, she still seems very alert.

i'm glad today we are getting her blood work for her thyroid checked. I'm hoping it's going to also tell us if something else is going on. Her pediatrician also added to the order to check liver functions, electrolytes, CBC and anemia

today's nurse, who hasn't seen her since last week. called me because she thinks elyse isn't herself either (so i know it's not just me).

i've asked her to bolus feed her some of her formula since she isn't drinking anything. She is also going to check her feeding button because i changed it for the first time two weeks ago and it was my first time doing it. And i'm terrified that i did it wrong or hurt her. it's very simple to change, but still. She cried and i'm nervous. So nervous that last night i even dreamt about it.

so weird that i've been trying not to worry about her, yet i dreamt that i was trying to analyze what was going on. I dreamt that i ended up taking her to the hospital and they swabbed her stoma and that it was infected with was why she was acting weird.

scary times

Today wasn't a good day at work. The firm let go of people. Rumor is 55 firm wide in different departments. So far, no one in our billing department was let go. We were told last week that overtime was no longer approved and this is our busiest time of the year. At least now we are gratefu to have our jobs.

Elyse & Quinn (Video)...

I'm borrowing this clip from Quinn's blog.

As some of you know... Elyse has a little issue. She loves, LOVES... to pat people heads. She mostly loves to torture (well she's showing them how much she loves them) boys.

Here Elyse is "showing Quinn Love" as Jen puts it. =)

I think we are going to have to address this little problem of hers with her developmental therapist again... because can you imagine her doing this to all the kids in school!

But anyways. I think this video is going to haunt Elyse for the rest of her life. =)

Yikes!

Well they are starting to cut our nursing hours.

Currently we are supposed to get 80 hrs every week, so far they have only gotten us 72. Beginning this saturday, November 15, they are cutting down to 70 hours a week. Not bad since we are only getting 72.

I believe our hours will continue to go down as the state will begin to use a new evaluation tool. I am pretty confused as to when this will happen.

Oh well.

Conference pictures & video

Make an on-line slide show at www.OneTrueMedia.com

HALLOWEEN PICTURES

BUTTERFLY

COUSIN ETHAN (BAT)

HUGGIES TO ETHAN!

TIA MIMI & COUSIN ETHAN

GRANDPA

THE GOOSE THAT LAID THE GOLDEN EGG...

ELYSE'S RIDE

COUSIN NATALIE HELPING PUSH ELYSE

COUSIN NATALIE (WITCH)