A better gait

So Isaac's PT was really impressed with him today. He's doing better balancing on one foot at a time. It seems that his balance beam is doing great at improving his balance and his gait. The VEPTR surgery gave him more of a waddle, but his gait is getting so much better. He's walking with a more forward stride and not so penguinish.

Isaac's Favorite Apps

I was asked for some more apps Isaac likes and I thought I'd share. We have a lot of different types of apps - because Isaac, like his mom has the attention span of a gnat. These are the ones that get the most use. Well in addition to his new favorite Laurie Berkner app:

1. Zoola - its an animal sounds one that is easy for them to use by themselves - with a lot of the other ones we have I have to help him along.


2. icommunicate - We use it to practice speech. I make a lot of storyboards of b, n, p words and so on and try to get 2 syllable simple words.


3. All of the kindergarten.com flashcards - great pictures and words - plays music after you go through a few - Isaac is a big flashcard kid though.


4. Verbs with Milo - He even likes the tada that most find annoying :)


5. ToyStory free book - We have so many good free books! I hate to even pay for a book on here because there are so many good free ones like this one.


6. The Wheels on the Bus by Duck Duck Moose


7. The Little Engine that Could by Once upon an app


8. Signing Time and Smart Hands Lite (he can get the videos to play for Smart Hands really easily so he can play with it himself for awhile)


9. Grover's The Monster at the End of this Book & Elmo's Monster Maker


10. Fisherprice's Bigfoot


11. The Singamajigs


12. Talking Rex


13. Going places (It models them going to different places like the mall & how to appropriately act) - We also have itouchilearn morning routines - but I have to help him with it.


14. iSteelPan - He likes this drum, but he also likes the free guitar app and the free piano app.


15. Kidzongs - He plays these over and over!


16. AutismXpress - its has all these different emotions on it - Its easy for him to maneuver.


17. Adam's Game


18. He loves sing-a-long games: We have a bunch by Tiger Stripes (you can just look them up in the app store and all of the ones will come up) - Mary's Lamb, In the Meadow, Working on the Railroad, Jack & Jill and If you're Happy and you know it


19. Dance Star Mickey


20. My Monster Voice


21. See.Touch.Learn


22. The Cookie machine


23. Chugginton Roundhouse Romp


24. Word Slapps - great that you can set the level of difficulty


25. And of Course BARNEY! It has 3 different games on it - its definitely been worth the 2.99 or whatever we paid for it.

Hope this helps!! Let me know your favorites too if you get the chance!!!

New ipad app we love

The Laurie Berkner Band has an app!! You can listen to all the great songs and watch videos & Isaac loves it. He's a big fan of the Googlehead song - he grabs his ears and dances all silly to it. Oh and did I mention that its FREE??!!! Yeah between that and the signing time videos the boy has a regular MTV for wee ones going on the ipad.

Isaac is singing :)

My boy is not only a dancing fool (he showed his smooth moves to our PT today) but now he's starting to sing. Its so stinking cute I want to eat him. So when we sing this little light of mine - he says something resembling mine, then screams NO (hide it under a bushel no) and so on. Every verse he's picked up on a word and tries to keep up the melody. He's got like 10 different songs he actually puts a word in there with. He has shown so much more interest in talking lately. His number of intelligible words has went up dramatically in the last few months. I'm loving it!

We have UPD

Our results show we really do have PWS-UPD!!! We are relieved and thankful. It doesn't change what we thought our chances of having another child with PWS were - you know, only 2 weeks ago when we lived under the impression we actually knew we had PWS-UPD. :)

Will we still have an amnio? Since the previous 9 months of pregnancy with ol Lucy made us blubbering crazy worried idiots - we still just might. Did I ever mention my husband locking the keys in the running car the day of the scheduled c-section?? Did I ever mention the fact my husband still looks at my little girl and wonders if she has PWS to this day? Our experience has really messed with our heads when it comes to having another one - OBVIOUSLY. :)

A Kind of Unbelievable PWS Appointment

So we had PWS Clinic in Columbus Friday. He is 95th percentile for weight (36 lbs 3/16 oz and 35 or 36 inches tall - up from 60th percentile 6 months ago). He gained the majority of that weight before Christmas and since Christmas has gained around a pound. After Christmas he became much more active (he was sedentary/guarded about his movement for a long time after his surgery) and we modified his diet. I gave the dietician a detailed list of the things we give him now - and she is going to be sending me some guidelines and a plan. I appreciate that. We also are going from .4 hgh to .6 hgh, so that is good. So now to the unbelievable part.

We told the geneticist that we were unsure how we could have UPD when neither my husband nor myself had ever had a blood test. She was dismissive at first, "no you have UPD" but we were persistent and said we were especially concerned in light of the fact that we are pregnant again. She look baffled, flustered, and concerned. Yeah I did say PREGNANT again - good lord we are crazy - and I guess that explains my crazy worried post from last month, apparently the hormones were starting to rage! Anyways, she looked back to the testing and saw that we in fact did not have blood tests, agreed that it is not certain that we have UPD, but likely. So we could have the imprinting one and our chances for having another would be different than with UPD. A pleasant thought for an already hormonal person. So we all had blood testing Friday and should find out in a few weeks if we in fact do have UPD or imprinting.

A little background, say a year and a half ago, when we were pregnant with Lucy, we expressed the same concerns to the very same geneticist, and were dismissed as worriers. I swear the same things were said this time around, but for some reason she actually listened to us this time. Mind you this geneticist has the God complex times 100, she feels apparently so intelligent that she doesn't have to listen or answer any real questions. Her personality has always rubbed me raw - she constantly criticizes WV doctors and early intervention which is offensive ( but mostly because I'm kind of full of myself too and cannot stand being talked down to). She apparently thought we were confused, told us again that we had UPD, and said if we felt so worried to have an amnio and they could do a methylation test.

What made me most upset is the way the geneticist acted. She immediately started blaming the initial WV geneticist for not doing the blood test.
Background: We went to a geneticist in WV in November 2008, She called me in January 2009 to tell me we had UPD. Seriously I was so shocked during the phone call I don't have a clue what she said for sure. The test was forwarded on to this geneticist in Columbus with the PWS Clinic who we saw to explain the diagnosis. We never got a confirming letter or a copy of any results from the initial geneticist, they simply forwarded the testing on to this geneticist, who we saw a month later and she explained that we had UPD, and then sent us a letter stating we had UPD and gave information about UPD. Yeah, so is it too much to ask when you receive a genetic test to REVIEW it to god forbid see if we need follow up blood testing to actually confirm it?

Anyways, thats enough of a rant I suppose for the disaster that was Friday. We are very excited we are expecting another one - but this time I will likely be having an amnio to ease our worries. I'm due October 11th, 2011!!!

and more dancing & painting