At 4 weeks old & after major heart surgery, Elyse was diagnosed with PHACE Syndrome, a condition that describes a group of findings including:
P - Posterior fossa malformations
H - large cervicofacial Hemangioma
A - Arterial anomalies of the head & neck
C - Coarctation of the aorta & cardiac defects
E - Eye anomalies
S - Sternal cleft.
Elyse has: H - A - C
Sunday, November 23, 2008
STOMACH BUG
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.
Friday, November 21, 2008
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.
Thursday, November 20, 2008
scary times
Monday, November 17, 2008
Elyse & Quinn (Video)...
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. =)
Tuesday, November 11, 2008
Yikes!
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.