http://www.morganswonderland.com/
this is where we want to take josie and the rest of the kids for josies Make-A-Wish. we just found out that she was granted a wish. we are waiting for them to come here to talk with us about it. Morgans Wonderland is an awesome amusement park in San Antonio, TX for people with kids with disabilities. how cool is that!

MATTHEW IS FINAL

We joyfully finalized Matthew's adoption on 2-8-10!!!! so happy that he is finally fully ours and he is happy too! i will post pictures when we finally get our computer back at home. a small person who shall remain un named =) wiped out our system. we should be up and running next week and then i can post pics from home (im at work right now....shhh!)

bipolar disorder

aside from josie's multiple special needs and recent scares we are also dealing with a child that has bi-polar disorder. this disorder is obviously very hard to deal with for the person that has it, but also for the people around them. whats hard as the parent of the child with bipolar disorder is that #1 you love this child and would do anything for them #2 you see it all the good, the bad, the up, the down. and if such and such sees the good, creative, energetic side they may look at you like you have 3 heads or that there is something wrong with you (the parent) when you talk about the other side (tantrums, destructive behavior, manic out of control behavior). or conversely those that have only seen the negative behaviors may see the child as 'bad' or that as parents we must be doing something wrong. or the ever frustrating dismissive phrase 'oh thats just being a kid' anyways, if anyone out there is dealing with a child that has bipolar disorder, i understand.

josie update

we are now dealing with swollen lymph nodes in josies neck and groin and dont know why. =( im scared. her blood work doesnt really doesnt show any infection so that makes me wonder if there is a scarier reason for the swollen glands and bloody emesis. say a prayer for my girl.

Vomiting blood

josie has recently had a problem with vomiting blood (which even though i am a nurse it is a whole other ball game to see blood coming out of your childs mouth) she has been hospitalized twice and we are waiting for an appointment with the GI specialist at Riley hospital. she is so fragile and her health needs are so complicated. but when i feel panicky i just hold her and look at her beautiful eyes and precious smile and remember why we do what we do...

LOCS!

putting locs in josie's hair! they are looking so cute! will post a picture when we are done!

sometimes its hard

when you are dealing with multiple special needs of varying degrees. you want to include everyone, but also dont want to hold anyone back. its a balancing act. we took all of the kids to a waterpark and amusement park last year but josie did NOT have a good time. it was hot, really hot. loud noises cause her to spasm, being splashed by water caused her to spasm. we were concerned about her bag for her feeding tube with food in it out in the heat. it was a lot of lifting in and out of her wheelchair for us (which would have totally been worth it if she was having fun). so this year we made the decision for her to stay home with ryan while isaiah and i took the rest of the kids. i felt soooooo guilty about it. i agonized....i even cried. but in the end i shouldnt have. i was able to devote my attention to matthew, nilam, anya, and aiden and they had soooooo much fun. and josie got individual attention from daddy and got to do her favorite thing.....watching movies! it worked a lot better than trying to include everyone just on principle and not on the facts and what everyone is able to enjoy. i also had tremendous guilt about cutting josie's hair really short. her hair needed to be kept in braids or it tangled or matted, but the braids and barettes were making her head sore because she can not hold her head up. oh i agonized once more. terribly, and cried.....again. but she loved it. smiled and smiled. it must have been freeing for her! and thats why its called having 'special needs' because you cant have a cookie cutter life with having family members with special needs. so i am letting go of the guilt and embracing the fact that we do the best that we can for our very special kids.