whats up in my life....very depressing and just blah

It's been a while since I've blogged. Lots been going on. Mostly due to Chloe. Our little girl is 16 months old. She weighs 15lbs and she is severly behind in every area of life, to give you an idea here is a bullet point list I made for our genetist appointment last Friday (more on that in a moment):

Chloe's symptoms and/or concerns include:
Congenital Miscrocephalus (present since birth)

Failure to Thrive (present since birth)

PAC's

Esotropia

Hypoglycemic

Tremors (ongoing) Physical Therapist said they appear to be attention tremors
but that they are also intermittently over all her body

gross low global tone (ongoing)

planter grasp reflex with curling of toes (noted on 2/04/11)

Toe hallux valgus right is worse than left (noted on 2/04/11)

Peabody Developmental Motor Scale of 32 for stationary (9 months) and locomotion raw score of 38 (7 months) (noted on 2/04/11)

arm flapping (on going)

one word spoken "Mama" used intermittently (never used with eye contact to me her mother)

little outside babbling

first smile one day after birth

first clicking noise 2 weeks after birth

has pulled up twice unassisted, each time she pulls up with her elbows and her upper arms.

army crawls

has started getting on all fours and rocking but unable to get forward motion.(started one week ago) (3/22/11)

When I put all this together in a nice neat little chart I looked up every word in her 150+ page medical records that I did not know the meaning too. I took notes and I became familiar with her whole chart. Upon looking up different words I happened upon a site that mentioned a thing called "Happy Puppet Syndrome" I looked it up out of curiosity, but low and behold I discovered that it fit Chloe as if it had been written about her. Texting my doctor I asked if I was crazy for even thinking this might be it. He didn't think I was. Hoping I was wrong I waited the two days and then on friday morning I brought it up to the genetisit. I despratly wanted him to run the tests to appease me but to say that it was more likely this that or another that wasn't so bad, I mean this is a RARE syndrome. VERY VERY rare, like crazy Mystery Diagnosis rare. And as we ALL know rare only happens to other people right? After looking her over and spending an hour asking me all kinds of questions he said that he didn't want to waste time or money testing things he didn't think it was so he would only test for one thing. Angelman Syndrome. aka Happy Puppet Syndrome. About two hours after walking out of the mans office the enormity of the situation hit me and had it not been for a dear friend I am sure I would have been crushed by it.  We are now going to have an MRI and a EEG done along with another Chromosome test. the MRI and EEG (both are to be done with Chloe put to sleep) will be done sometime next week or the week after. I feel that if the EEG comes back abnormal then that is my conformation that it is. I would give anything for this not to be what she has. I want so badly to wake up tomorrow and her to talk and walk and act like any other toddler her age. I want to see her in her pretty pink tu-tu twirling around awkwardly at her first dance recital. I want to hear her tell me about her friends and her hopes and fears. but I know... this is not going to happen. God could heal her, He spoke the world into existance but he wont heal her. I'm not mad at him. I know that he knows more about this whole thing than I do. I know that he is in control and that ultimatly he will be glorified in this. I know this, I don't like it. I don't like that He CAN do something but he won't, but I'm not mad. I'm just sad. So very very very sad. I have cried no stop since Friday. really. I have already gone through two brnad new sets of contacts. I eat because its time to eat not becauce i'm hungry, I go to bed when its time to go to bed but I dont sleep (unless Bobby gives me a nifty pill to hlep me sleep)to say I'm an emotional wreck would a this point be an understatment. Everyone says that I need to wait to get the test results. But see I think of this as my mourning time, and when the results come back it's time to kick it into gear and make the million calls to the medicaid disability office, the social security people. the therepists, the million other people I need to contact to get Chloe the best possible help and all thing things she is going to need, we are going to have to think about education options and long term care options. We are going to need to look into either handicapping our hoome or look into finding the funding to get a house that is larger that can accomidate her and the the equipment she is going to need and the resourses that she is going to need. A bigger house with more handicap features would be nice. Heck a house with a second bathroom and with out mold or structural issues would be nice. but the point is right now I can mourn the loss of the dreams I had for her, the prom and wedding dreams, the ballet and crummy art project dreams, the dream of she and I in our kitchen with little matching aprons making thinksgiving dinner for everyone. The dream of her holding her daughter and letting me kiss my granddaughter The million other little dreams you have that you don't know you have. In an instant all that is gone, and it is replaced with adult diapers, infant toys at 20 and  an infants mindset in a ever growing body, Now is my time to lose it because later I will be too busy,Everyone has asked what they can do and I have really had no idea, I;m really not thinking all that clearly. but I have thought of some things and just not had the gumption to really say what is it that I need, but here on my blog in my own little world, here where I am convinced no one will ever read I can tell you. because you aren't real.  I need prayer... lots and lots of prayer. Mostly Prayer that either she will be healed or that she doesn't even have it.  I need you to look up what Angelman is yourself because for me to tell you is hearbreaking and for you not to know is heartbreaking. I need my house cleaned and I need my laundry done. I was behind in housework before being a homeschool mom of three littleer ones but now... yeah it's bad... I mean like the begining stages of hoarders bad. A clean house always makes me feel better and it lifts my spirits but right now I can't. And prayer, I can't get enough prayer. WOW I sound pathetic.  but yeah that's about how it goes. I have never been so low. So that is why I haven't been blogging. Just in case you wondered

A ramble about my hectic life.

Ok so let me just tell ya'll about my unending week, life.. About two weeks ago we started gearing up for what I knew was going to be crazy busy. The week started out with my mother in law getting the kids on Monday, so school was out for the day but it let me get the majority of the housework done that day. Tuesday I did laundry like a crazy lady and got ready to go grocery shopping that would have made Octomom proud. Wednesday I dropped the kids off with my wonderful friends the Carpenters and spent the day with my mother in law as she had knee replacement surgery. When I picked up the kid,s my youngest son was covered in this odd itchy rash. I was up and down all night with him and his "itchies" Thursday morning I took him to the doctor, thinking it was staph I was stunned to find out he was covered in poison ivy and it was on the verge of staph. took him home and loaded him with meds and cleaned a little while ( and made 3 more trips to the store) before my mom, my sister and her 3 month old daughter came in.They got in about 4m.  Cooked dinner and got them settled in. Friday morning we were going to go to the park but then my mother in law called and I went and got her from the hospital, (which, bless her heart, took 2 hours just to get her from the hospital to her house) then a mad dash to walmart to pick up her Rx, they were going to take 3 hours to fill it so I went to another walmart, picked up my sister, and the boys and her daughter, went and dropped off my mother in laws Rx, her groceries, then rushed downtown to go to Light the Night. Saturday Bobby and I cleaned the chicken coop first thing that morning then we had a homeschool field trip to the Skidaway Oceanography Institute for Science Day. that was really neat and the kids had a blast. then home and dinner and then a night trip with Julie and her daughter for party supplies and gifts. Sunday found Josh and I BACK in the doctors office, he had gotten worse. Evidently, the itchies of the poison ivy had spread (how the heck was I to know that the sap can be active for up to a year and anything you touch has to be washed including shoes?????) and the staph had turned into infantigo. BACK to the pharmacy for a strong liquid steroid, a cream steroid (yes he DID turn into the incredible Hulk) and an antibiotic. Then we came home while everyone was at fellowship and I put on a movie and started washing all of his things. Sunday evening was very busy just trying to keep up with him and his roid rage. Monday I took my mother in law to her physical therapy at 8am and then blood work, and then grocery shopping, Rushed home to get the house decorated for my sisters oldest daughters birthday party that was a joint party with my sons "betrothed" (she turned 7) then we all headed out to Springfield for the fair. got home at midnight and was up by 8 to get ready and take my sister with me out to Wesley Gardens to check it out for my homeschool meeting where I was told I was getting up to talk about it but they didn't call me up. Oh well. got home and crashed. Wednesday we went shopping at once upon a child and ross, then came home and cleaned the house. At this point my mom started not feeling well and Bobby started complaining of allergies. Thursday I had to take my mother in law to physical therapy, blood work and shopping again, Bobby was sick and came home and went to bed. Thursday night at 11pm I realize that the next day was Friday and I had to bring a lesson and a craft to co op. Friday Morning after 3 hours of sleep we all went to Co op. My mom came and saw the boys and had lunch with them. they recruited me to be a team leader in the morning and then I taught that afternoon. Came home, got ready and went and had dinner with my mom. came home from that and stayed up with Bobby and Julie till 2am ( it was during this time that I got some video for facebook) At 7am mom and Julie and her daughter left, Bobby was throwing up in the bathroom and a bomb had gone off in my house. I cleaned till 4pm and then took the kids to the Garden City Fall Festival and then after the fireworks we made it home by 9:30pm got the kids in bed and decided that I was exhausted, I asked Bobby since he wasn't feeling well anyways that I wanted to stay home from fellowship the next day, he thankfully, said yes, This morning, I woke up at 10:30 (Bobby got up with the boys and Chloe) I just slumped around, I did get ready and go to the store for baby wipes, baby food and more meds for Bobby. came home and made a cake, then realised that whatever my mom had she shared with Chloe. She screamed till 10:30, and now,  here I sit. trying to print out stuff for tomorrow and sooo thankful I had a restful day, it was wonderful and much much needed. Now I am trying to decide what to do about tomorrow? Clean and do laundry or do school. I can not wait till the boys are old enough and able to do school on their own. I'm not sure.... maybe I'll see how long the kids will let me sleep in and take it from there.

So, what have you been up to in the last two weeks?