Tuesday, March 17, 2009

my baby did it!

yesterday was such a great day. i saw maya crawling on her own for the first time ever. she took a few "steps" and then stopped. it's not a full out crawl yet but she is moving forward for sure. the fact that she is moving her arms forward and then her legs is such a big deal. it's something that has taken a while to get.

this last week she has really grown up so much. it's amazing that so many changes have occurred the week of her 1 year birthday. literally on her birthday she started telling me that she didn't want to sit in her high chair. she did this by arching her back when i would try and sit her in it. normally i would hate such things but for some reason it doesn't bother me as much. it's almost like i'm glad that she is starting to express herself.

yesterday while watching her i couldn't help but jump up and down. i felt so happy. my little baby is growing up. she is starting to wave bye bye, more and all done. she is learning her first language now. it is a wonder to see it happen in front of my eyes.

i want to write all these little milestones down so i won't ever forget the hard work maya has put into making them happen. i hope that one day she can be an example to others. i hope that she can be an inspiration just like adults with down syndrome that i see that have accomplished so much.

Sunday, March 15, 2009

Maya's newsletter: 1 year

today i am so happy to announce that maya is 1! can you believe that it has been one year?! well i certainly can't. it really doesn't feel like a whole 12 months has passed.

i have so much to report to you about miss maya. this last month it seems like she is getting rid of all her baby fat and is stretching out. luckily her appetite has caught up and she is very much enjoying eating her fill of veggies (as long as there is some kind of fruit in the mix). her latest crazy is yogurt and ice cold formula.

just this week we discovered that maya can stand at the couch and play (with a little help from mama). she doesn't last a very long time but each day that passes i see that she is gaining more tolerance for standing. her sitting skills have also improved. she loves to sit and play on her own. she is so over laying on her back unless she's very tired. =)

just this week i've noticed that maya loves to mimic everything we do. from itsy bitsy spider to coughing if we cough. everyday we try our best to use sign language when we are feeding or playing and i see that it is finally paying off. she is copying our hand gestures now and i think that she is on the verge of starting to sign "more" and "all done" on her own.

last week we had a new speech therapist do a feeding evaluation on maya. this therapist specializes in oral motor development. during the evaluation maya, with minimal prompting, used a straw to drink from a container. now everyday i use her special "honey bear" straw and cup at meal times to help her develop tongue retraction and muscle tone. with these new techniques and exercises we hope that maya will become more aware of her mouth and in turn improve her speech.

as you all know we have recently been told by the state that maya's benefits through arizona early intervention will be discontinued. wednesday there was news that a judge blocked DES from cutting these services. it is still unknown at this point when the services will be reinstated but we hope that this ruling will stick and maya will again receive her help from the state.

i wish to thank all of you for the interest and love you have shown our darling maya. with all of your support we have had a wonderful year. from the moment maya was brought into this world our lives have never been the same. it's been such an amazing journey on many levels. i can honestly say that i would never change a thing about it.

Thursday, March 5, 2009

Arizona DDD cuts are official

Well we finally received a letter yesterday from Department of Economic Security.   The letter states that due to a 150 million dollar shortfall all of Maya's services will be discontinued. Ironically this will take in effect on March 13, 2009 (Maya's birthday).

At this point our only hope is to have Maya qualify for Arizona Long Term Care System (ALTCS). We have already started the process. However many times it is very difficult to quality until the age of 3. We also will send a letter and voice our disagreement to DDD (Division of Developmental Disabilities) for an administrative review. I have heard we have a right to dispute this letter based on the Individuals with Disabilities Education Act (IDEA). According to Federal IDEA policy, services can only be stopped if the parents choose to withdraw their consent to participate or the child no longer needs services. I hope this is the case and our services will be restored.

Thank you all for sending us your thoughts and prayers and personally writing the Governor and local representatives. We cannot give up the fight and must continue to voice our concerns. My fear is that once they have done away with this program they will not bring it back. It is so sad that they will let our children suffer like this.

Below is a blog with the latest news and info on this subject.  I have found it very helpful.