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
Thursday, January 29, 2009
Saturday, January 24, 2009
Thursday, January 22, 2009
I have to brag =)
Last night I got a email from Alex's homeroom teacher. It reads:
Mrs. Camacho,
I'm so thrilled to let you know how great Alex has done in my classes. Report cards will be given to the students on Friday, but I'm just so happy that I wanted to let you know his grades beforehand. Alex's hard work has paid off and he will be receiving an A in social studies, a B+ in reading, and an A- in language arts. I've spoken with Miss Hollis and she told me that he also did well in her classes. Alex seemed so pleased with his grades. He truly makes my job easy and that much more rewarding.
Can I just say how excited I am. Last year was very bad. That middle school, would not help. I had meetings, I emailed teacher, I left phone messages and I even had doctors letters asking for help. They would not do it.
This year, thank God he was accepted to a Charter School. First week he started to struggle, but I immediately contacted his teacher and she contacted the principal who then contacted the case manager who then contacted me. All within 4 hours! We set up a meeting. I got another doctor letter. The school gave him his 504 plan (which the other school never wanted to do, even after I requested it in writing).
AND NOW LOOK! =) We haven't had a single problem. Homework is being done. No missed projects. Teachers are aware of his ADD and help him stay on track.
Can I just say how bad I want to email his old teacher from last year and rub it in their faces. =D
preschool
They have 60 days to review her case, then schedule more meeting to do evaluations and interviews. They will then decide what services she will receive next year when she start preschool. If that school cannot provide the services she needs, they look for next school in our area that will. Transportation will be provided.
So far, just based on the fact that she still isn't potty trained (we are trying) our home school cannot take her.
If transportation is provided, then we can enroll her in daycare (preschool is only 2 hrs) and the bus will pick & drop her off at that location.
Now i was ok with this. This is what I have been talking to lalo about, but yesterday my mother had to tell me about the daycare worker that threw a 16 month old on the floor. Lalo had mention it to me before, but I didn't know the exact details. I looked it up and I'm heart broken and terrified.
http://abcnews.go.com/TheLaw/Health/story?id=6689027&page=1
Friday, January 16, 2009
Thursday, January 15, 2009
Ohh no...
Elyse started her antibiotics (CEFDINIR)on Tuesday. I don't know if I should wait a bit longer and give Tylenol or take her in?
Wednesday, January 14, 2009
Tired!
Last night I think it was the ear. We ended up having to give her the Tylenol around 1 AM. Then she calm down and I don't remember what time or why, I brought her to bed with us. I think she was crying..?!
This morning she was sound asleep between Lalo and me upside down. I cancelled her playgroup this morning. She needs her rest.
Tuesday, January 13, 2009
Ohhh well
Alex has a sinus infection and left ear infection. He can't hear from his left ear. They check it for movement and it's flat. The doctor that saw him is a little concern. He said if that ear continues to give problems, then we will have to revisit his ENT. Alex did have ear tubes back in 2003. He also had his adenoids taken out and his tonsils shrank.
Elyse has also been rubbing her right ear (the one with the new tube). I was a little concern over the weekend because i noticed junk draining out. They told me it was good that it was doing that. The tube is doing it's job and we have to continue with the ear drops they gave us after surgery. BUT she hasn't been eating or sleeping well. She still is very congested. Since Alex was going in, i figure better safe than sorry. Turns out she also has an infection in that right ear and the junk is puss draining. We also talked about the weight loss and this doctor said to use the tube again. We have it, use it. I said OK. =) Once Elyse starts feeling better, then we can go back to not using it. i guess i have to hide my little ticker over there on the right side.
Sunday, January 11, 2009
Alex is turning 13 tomorrow!!!
My little mama's has a cold. Lots of coughing and congestion. I'm also a bit concern about her weight. Some of her therapist made comment how she's thinning out.. how they can feel her ribs... etc. To me it's concerning because she's not eating too well. We do struggle to get her to drink her 2 bottles of pediasure & 1 cup of water. I got her on the scale this morning and she's lost a pound.
I'm hoping this week will be better. Ida (day nurse) is returning. Elyse does much better with her. Last week with her out sick, Elyse was able to get away with a lot.
Oh yea. Vocabulary is increasing. =) All weekend she's been naming everyone in my parents house. She misses them. "Ethan, grandpa, pinky (dog), coco (dog), claudia). We were supposed to take her over, but the weather hasn't been good.
Friday morning I had a meeting with her Early Intervention team (birth-3 yr program). Overall they are very happy with her progress. She has little areas of delay. PT is still working on strength. climbing stairs, jumping. OT not much. SPEECH & Language is working on two words. SPEECH for eating... well what can I say. DEVELOPMENT she's good. she's working on instructions. her play skills are very good. DEVELOPMENT & OT recommended that I bring Ethan during her OT sessions. They are going to work on Elyse's play skills with other children. Elyse still loves to pin other kids down, so we want to work on that before she starts school in the fall.
Another thing we talked about was potty training. We were a little concern about her not holding it longer than 20 minutes. Their recommendations is to take her to see the specialist now that way we have an idea of whats going out instead of stressing about it.
Sure after I emailed Dr. Bergquist (pediatrician) Elyse kept dry all day yesterday and went potty every 3 hrs!!!! EVEN after drinking a cup of milk. YAY!
so maybe she's now getting it? i think it does have to do with the fact that we are constantly trying to push liquids.