PHACES CONFERENCE -

NOVA & Texas Children's Hospital PHACES Family Conference November 5-7,2008

Yay!!! 

Hotel and flight reservations done!

I cannot wait to see our friends and meet new ones.  This time Elyse is going, but Alex isn't.  I really wish we could take him, but it's better for him not to miss class.  Plus I promised we would do something fun.

I did end up buying a plane ticket for Elyse.  I know, many suggested that I could just carry her on my lap and say that she was 23 months old... but I'm a chicken.  I wouldn't have slept.  Lalo told me to just buy it, so I did. 

Now I have to get a letter from Elyse's pediatrician for her medical equipment, formula, oxygen tank to carry on the plane.  I was told there shouldn't be a problem, i just needed those letters.

Our Saturday -

Elyse and I joined our friends Martha & her daughter to a country fair near my home. The girls then had their hair cut. It was Elyse's first time. She did very good. When the stylist came up to meet us, Elyse immediately open her arms and the stylist carried her. The stylist was very surprise that she was so friendly. Elyse sat in her little car, let the stylist put her little cape and started working on her hair. Everyone commented how good she was. Next to Elyse, Gabriella was getting her hair done. It was very cute to see them both.

HALF WORRIES....

I spoke to our social worker through Early Intervention yesterday =) and she told me not to worry.  She would help me out when it came time to enroll Elyse in Pre-K next year.

Once Elyse turns 2 yr 6 months - in December.  We will go over to our home school (which is very close) and do all the necessary paper work & testing.  Turns out they can do occupational, physical and speech (language) therapy.  That was good to know.

Meanwhile, next week we are going to meet to go over the time line since it's so close and that way i don't have to freak out.  =)

Now my only concern is with the nursing.  I have to wait until we have our meeting and find out what Springfield decides.   i just hope they don't send us a letter say... oh guess what, you no longer have nursing as of next month.  Then we are screwed.

I guess i should start looking around the daycares (just in case) just to get an idea of what it's going to cost us.

I have to share these pictures that lalo emailed me yesterday. 
This was Elyse a year ago:
=)

WORRIES!!!

Ahh!
I'm already worrying about Elyse turning 3.
COUNTING DOWN : 9 MONTHS!!!

Why? Because when she turns 3, Early intervention stops. I've seen from personal experience... that it isn't easy to find services for children over 3.  There are long waiting list.

Then to top it off… I got a letter that her coordinator resigned, so I have to wait until the reassigned her case which I'm afraid is going to take time.

You bet I'm going to be calling until we get someone assigned. I also found out that one of her therapist is going to have a baby. Even though she only comes twice a month… it's still something Elyse isn't going to get and I don't even now how that is going to work.

Yes.. There is still time, but I do not want to wait until the last minute to find out what is going to happen after the services stop.

I know that for sure, CPS (Chicago public schools) will continue with the speech/occupational therapy once a week. But I still need to find out how much more she will need. Eating has gotten a bit better, even though we still struggle with chewing and pocketing food. Next month we have a swallow study schedule to check if thin liquids (like water) is safe.

I can't help thinking… ok. What if we still have to watch how she eats. How will that work once she's in school.

OH and wait. Next month, we are getting reviewed from DSCC. Meaning.. Our nursing hours might get cut or lose it period. Elyse has done wonderfully well. In November it will be a year since her last hospital admission!!!! Yay!!!

So that's on my mind too.

I can't help it. So yea, I'm sort of freaking out right now and trying to "plan" for the future. If we lose our nurses… That means day care… but then if she still has the feeding problem… will the daycare be able to accommodate.

If we get a baby sitter… of course we have to make sure they have CPR training and will they even want to take care of her with her health history? And I'm afraid we are going to get charged extra because of all the special details.

***SIGH!!!!****

3rd play group session...

Elyse had her third play group session this morning. It's ok. I think she gets distracted with the other kids when they are working on projects. Today in Arts & Craft, she had to do a tree and use finger paints for the (apples & leafs). She did not want to touch it all. She kept whining "all done". I know she has worked with finger paints, shaving creams, markers with her OT. She makes her rub it all in her hands for sensory. I think Elyse was acting up a little because I was there. OT is always telling me that when I'm around, Elyse doesn't focus. Next week, I'm going to have Lalo step out of the room and watch her through the window. Hopefully that will work better.

A week or two I was very excited. I was changing my shirt and she took one of mine and cover up and said "I cold". =D She repeated it a few times. I consider that her first sentence.

P.S
Alex (who's in 7th grade) tried out for flag football at his new school. He was so excited that they picked him. He called my sister and her boyfriend to tell them. Poor thing, I don't think he knows how to play. yesterday he was complaining that his arms were sore (from catching the ball). They were red!

terrible twos!

Geez my kid! She was all over the place today. Alex had a 45 minute doctor appointment

Because it was a last minute appointment i went straight from work and lalo dropped off both kids. I also had ask our nurse to "lighten" the diaper bag because we were taking the public transportation home. Lalo had class.

Oh boy. Elyse was very restless. She kept stealing the pens, paper from Alex's pediatrician. Then she was opening the cabinets. at one point i clapped my hands and said her name... you should of seen her jump! it was too funny. Dr. Blade just laughed. Thank God mostly everyone in that practice knows us because of Elyse. They enjoy seeing her and for her to be acting like this, is great to them. =)

oh the funniest part is when she decided to pick pocket the Dr. Blades coat. She pull the thing to check ears. She sat down and tried putting it in her ear! I was so embarrassed! I told her... Elyse, but then when the doctors have to check your ears.. you don't like it, right! of course Dr. Blade didn't mind. She just laughed the whole time. I was dying.

So I told lalo... I definitely need to pack stuff to keep her busy. Normally when he is with us, he gives her his phone and plays one of her movies, but today he had class so i was alone with a lighten diaper bag.

Oh and you should of seen her on the way home on the bus. She just loves being the center of attention. She's looking at a lady sitting near us. Elyse starts squinting her eyes, trying to get the her attention. Elyse then offered her one of her snacks. she smiles again at her. tries to wink... =) that went on the entire ride. The lady was cracking up.

SHE BIT ME!

Yesterday at my mother in laws house Elyse bit my shoulder!!!! This is the second time. The first time she didn't do it hard, but i told her that was a NO - NO. She understands what NO NO means.

but yesterday was hard. i was carrying her and she yawn and snap. i was talking to my mother in law and her sister in law when it happen. i immediately said NO NO and I said,... ouch. look you did an ouch on mommy. She thought it was funny, but when no one laughed and saw that everyone looked away when i was telling her it was a no no, then she got serious.

ok... i laughed after a couple of minutes because what does Elyse do!! she kisses me and not just once.. a few times. we all couldn't help it especially since elyse has stop giving kisses. she now gives you the her cheek. She must of known that she did something bad.

Brat. now my shoulder is sore.


Potty
I've been doing potty training all the way since saturday. Meaning no diapers. I order these cute undies that are called "potty patty". They are very thick and absorb most of the accidents.  I got them at this other site with a discount code I found, so I was very happy.  
www.PottyTrainingConcepts.com  (they have for boys.. Potty Scotty).
CODE: 25-Off-Newsletter FOR 25% OFF

It's been hard because Elyse doesn't alert me yet. i'm hoping that with the underwear's, she'll start feeling uncomfortable and get it. So far the mornings are harder to catch because of her night feedings. I'm being extra careful when it comes to liquid. After i offer her something, i sit her on the potty. i also noticed that she'll pee when she's eating. so in between her meal, we take a break.

I'm hand-washing her underwear's and just hanging them outside, but tomorrow with the nurse, i'll probably have to wash & dry them each night. i don't expect her to hand wash them even though for me it's easier.

I also order her to two night time training pants. they are like clothe diapers, they have snaps on the sides. one will be for night and the other will be for nap time. but i'm hoping that if her nurse sit her on the potty before nap, she won't wet them. It's hard getting everyone on the same page. Her nurse, who's older has her own ideas.

Now I have to find some rewards.  Some people use stickers.. i don't think Elyse care about them.  She chews them up.  Someone did mention that they used candy.  =)  Elyse does like chocolate.  I'm thinking of getting some bite size M&M's to reward her each time she potty.  Hey.  what ever it takes to get her to learn.  If anyone has a better suggestion.  please tell me!

=)