Andres

 Gotta love this guy!!

Our son is a very sincere kind hearted child. He is very loving and speaks what he means. There are no secrets from him as he has no ability to keep a secret LOL.

He has grown so much since he came to live with us in march and we are so excited to see his ability growing as he comes home actually spelling words and able to memorize our home phone # !!!

In the morning our baby is like a loose canon ready to explode!

In the world  of ADHD and PTSD premed times for him and us are hellish to be blunt. Our little angle sharpens those existing little horns and litterally dances on the table amongst other things.

An hour or more after the  meds kick in he has turned back into our glowing little angle. He thrives with praise. His early years were very rough and we cant fix that but we are doing out best to make his now and future stable and good. 

He is doing remarkable in school now... Go Andres! Keep it up!!

 Showing off his new dinasours :)

 Helping clean the pool so we can take it down for the season.

He loves his big sister NeVaeh and shares his movies with her. He looks out for her :)

NeVaeh

 NeVaeh  has been doing awsome lately

She has been working on the Ipad all summer on the Talk Tablet app for communication. Over the summer we went to the Sanford Castle weekly for ST to get used to it. She now is back to school and gets her ST there 4x a week and at the castle every other week.

She ordered her food at Dennys the other day and was able to figure out what she wanted without any cuing. She is able to navigate around it really well! I have it programed pretty complex and was afraid it was too hard for her but she always seems to find where she want to go. The app is great as it can be as simple or complex as one needs it to be.

https://www.youtube.com/watch?v=u8pUO4mSXuw&feature=relmfu 

She was fussing about dinner last night so I gave her the Ipad and told her if she could tell me what she wanted I would make it. She was signing chicken. I said I know you want chicken but tell me with your words. She found it in seconds! then proceeded to go the freezer and get it out :)

This seems to be really opening a new world for her. The ST found a way to lock her app so she cant navigate out of it so that also helps. She has a long way to go but this is so exciting!

 

https://www.youtube.com/watch?feature=player_embedded&v=m6HcFWGQn48

She did have a rough September seems she just couldn't get over being sick :(
She started the end of August with a sinus infection and couldn't quite get over that even with two courses of antibiotics then ended up with a mysterious rash.
Shortly after that cleared up she again go very sick and throwing up. Ended up with pneumonia and UTI. She again had two different antibiotics :( . This time she again ended up with a mysterious rash. The Doctor thought is was some kind of strepp infection. I though it was the antibiotics. It cleared up using a steroid ointment a few days after her antibiotics were complete. Guess we will find out if she needs the antibiotics again if it was that.
She's feeling pretty good now with still a little cold symptoms but nothing too bad anymore....lets hope it stays that way!

I managed to take some pictures of her the other day :)

She is progressing with her communication though she isn't saying much for words right now my 8 year old is doing great with communicating. Her messed up chromosomes just continue to be a challenge for her. Nobody can tell her she  Can't do something cause she will just in her own way in her own time. 

 This is her world of 1p36 deletions syndrome/12 q duplication Syndrome

Aaliyah

Aaliyah and Andres in the tractor tire

Wow so much going on with each child right now each one deserves their own entry.

Little miss muffit has been doing well going to preschool 4 afternoons a week.

She has a very sparky personality. Her little body in the 7th percentile is made up for with her bigger than life loud voice and sometimes defiant personality.

Don't get me wrong...She's a really good girl but she's strong willed and don't like to back down but when its all said and done she comes and crawls up in our lap and wants to snuggle.

She just yesterday had laser surgery on her Hemangiomas on her face. She also had a MRI/MRA done.

The surgery lasted all but 15 minutes but the test lasted 2 1/2 hours. I had to have someone call back to see if everything was ok as I wasn't prepared for it to be such a long wait!

Suddenly she was brought back to the room already awake but sleepy. By the time we got home you wouldn't have known she was under most the morning as she was as ornery as ever...LOL

This is her world of PHACE Syndrome. She has a pretty mild case and hopefully the tests will show her vascular system is ok. An old MRI/MRA showed some narrowing of her carroted artery so they want to check it out.

 Before laser

 After laser

Day after laser surgery. The doctor said it will take a couple weeks for it to fade.