Sunday, August 2, 2009

Doctoring and all :P

So A-man is on the list for the Marcus Institute....There are 170 families ahead of us. (Really? Wow....) So it will probably be about a year before he is seen there. We'll have to work out school, babysitters, etc when the time comes..I'm working on crossing bridges when we get to them instead of worrying myself into a tizzy....I'll let u know when that happens LOL! July 16Th we got some bad news about Adam. The bones in his cranial/cervical junction are all compressed with the very top bone looking malformed. He will go see the neurosurgeon in August to see exactly how to handle this as it may mean that part of his brain is growing into the hole in that very top bone, which can make his spinal cord and brain fight for room. Best case scenario is that he will have physical therapy and his neck will be stable enough to do so, physical therapy will increase his range of motion so he can do simple things like turn his head from side to side without using his shoulders and he will be able to button his own pants and tie his own shoes :) Best case scenario for an unstable neck is that our angel will have a halo....for 8-12 weeks and depending on what severity of traction they have to use he'll either be in the hospital for 1 week and at home for the remainder or at the hospital for the entire time....Mid case scenario is that he'll have to have a rod and fusion surgery to stabilize his neck and that will mean a couple weeks in the hospital and recovery for idk how long at home....worst case scenario is basically brain surgery, rod and fusion surgery and halo....which means long periods in the hospital and a long recovery at home....Praying for the best....Preparing for the worst. That is the only way to survive this type of thing I think. Or it works for us...whichever. Right now he can't do anything where he might twist his PE and recess are out at school. We had a meeting on Friday to draw up his 504 plan. I'm beginning to not like the principal more than I didn't like her last year. She kind of wanted us to withdraw him without even being able to get services at home until all this is over with....Sorry but only being not able to do 2 things out of the entire day doesn't constitute us withdrawing him. They'll have to do what they do for other health impaired children and find something for him to do instead. I'm starting to have a deep need for Adam to have normalcy as much as possible in his little life. Every tid bit of "normal" we have is special...School is his "thing" he LOVES it and I will fight how ever long I have to to keep him there. He needs it, it makes him happy.... And my job as a parent is to fight for my children. So I'll go to meetings, I'll send what i need to send, I'll sign what i need doesn't matter. One thing they have got to realize is that I am not weak. I won't stop fighting for him until there's nothing left to fight for (everyone does what they need to for him) or I decide that its enough. Anyway we're getting ready for church right now so I'll stop blogging for now.... Keep us in your prayers, Lord knows we need them! Thank you to all who send a positive thought and prayers our way...we feel them and draw strength from them on days when we have none left.... LOVE!

Monday, June 29, 2009


Thanks Kristi for reminding me what the addy was for this blog!! SO anyway Hows about an update?! NOTE: THIS IS RANDOM!!!!

Ok SO A-man is done with school for the summer and starts FIRST grade on July 30th!! He and I are SUPER excited! We have a doctors appointment just about every week this month. 2 the week of the 14th :) I can't wait to go to the Marcus Institute...sounds like a very interesting place that is devoted to helping children that others used to write off :) I am SO blessed that nobody has written my child off as "unhelp-able" It has taken 6 years but now he has a team of doctors who, along with his family, are devoted to making him the absolute BEST he can be. We don't expect overnight improvement. Its going to be a (mostly) up hill battle..He will never totally be "normal" BUT I believe that he WILL be an amazing, wonderful, self supporting, person who thru his trials and tribulations will learn something that many of us do not get the PRIVILEGE to learn....I don't know what that is yet...but its not my lesson ..He has already taught me so much..I thought I knew everything...but I was wrong! (see I can admit to being wrong from time to time lol) Little man is trying this best to teach me patience... imagine a 6 year old with a 2 year olds impulse to do strange, often destructive things...I'm trying to learn to be patient with him and my other kids and I have come a long way..but I'm not perfect...its gonna take a My house is messy 90% of the time even though I clean constantly throughout the day...I just spent 20 minutes picking up a billion straws that he decided he needed to strew all over the house. Why? Who knows. He knows..but he wont let me in on his secrets lol ! There are days when I absolutely think he really has an agenda..That is to drive me absolutely bonkers (like in the fetal position rocking in the corner bonkers) but then he smiles, or laughs, or hugs and kisses me and I realize that he is just a very very different person than I am. He sees things differently than I do. I just over the past year have realized that he sees BEAUTY in mundane things. he can look at a pile of sticks on the ground and make something out of them that we never thought of... While doing tasks that are every day for us, he's bored. He cant concentrate on learning to read, or listening to a story, even watching most TV shows...but give him a pile of sticks (or in this case a new pack of straws) and he concentrates, he makes something out of them.... If you watch him you can see it in his eyes.... you can almost hear that wheel turning in his head :) His teachers, doctors, friends, family and I have to find a way to unlock him.. we need to find a way that will let us into his world.. Thank God as he gets older he's letting us in a little more...I'm sure the neighbors think the weirdos down the street need to find something better to do than make letters and shapes out of sticks, or count the blades of grass in the front yard..but its ok...I regret this but I spent years...yes YEARS embarrassed of my child. That was a hard sentence to type... I wasn't embarrassed of how he looked or walked or anything like that....I just wished that when we were out of the house he might wait until we were in an empty aisle in Wal-Mart to ask me a question or rearrange things on the shelf. I can't handle the pity stares, or even dirty looks... I know what the people in the store were thinking... (hey! i used to be one of those people!) I'll go over some peoples thoughts at Wal-Mart last week.. 1)"Man shes got a lot of kids to be so young!", 2)"He looks different, I know he's not Down's syndrome but....something is definitely different", 3)"Bless his heart!" ( Come on! We all know what that means!) 4)"She really needs to discipline that older boy for getting all the stuff mixed up on the shelf" 5) "what did she do to make that poor little boy cry like that!?" (well ya wanted me to discipline him and now I'm the devil himself for leaning down and whispering in his ear for him to stop?!) OR....this is what I love: "....................." I love the blank stare....The kid has hearing aids and glasses...I mean REALLY it's not like he's got a hand growing out of the top of his head! OR you're just jealous that you couldn't get YOUR hearing aids in neon blue! I bet that's what it is....Younger people , thank God, aren't as big "stare-ers" as older people. I love older people but really....y'all taught me that staring is rude...but you can do it? Anyway it was just easier not to take him ...or put him in the cart so he couldn't reach anything and shh him very quietly the whole time we were in the store. NOW ..go to the store with me...we rearrange LOTS of things (I make sure to put them back)....we yell songs walking down the aisles if Adam wants to sing...the kids get free cookies that HE gets to ask for.... We wear flip flops on the wrong feet in the middle of the mall... and now I stare back...then I hold my son's hand....and smile....funny thing is the nice people smile back and I know they were just curious....the mean people back down and turn their heads or walk off and mumble under their breaths.....most of the time as I say "Have a nice day!" to them.

This blog totally didn't go the way I planned it LOL! But Anyway now that I can log in I'll be able to blog more often! We are still waiting on the Noonan's testing results so keep your fingers crossed, prayers prayed, all that jazz....Not expecting it to be negative but just praying for answers.....that's all I care about anymore...I just want answers..

Friday, March 20, 2009

A little background info

Our 5 year old son was born on April 19, 2003 5 days past his due date :) My water broke in the middle of the night and we had a beautiful baby boy 39 1/2 hours later...yes 39....hours...AFTER my water broke....i know..i know. OK so anyway we enjoyed our stay at the hospital for 4 days. Everyone came to see Adam and even the nurses doted over him. The next thing we know it's time to go home!! We stopped by hooters across the street to get some chicken (don't go there right after you have had a me on this) then went to my hubby's parent's house so they could see their new grandson outside of the hospital! The next few days were happy, tiring, and stressful all at the same time... I had started out breastfeeding but decided that Adam didnt like it because he always cried so he turned into a formula fed baby (and slept and slept....still to this day if you feed him and get him warm he's fast asleep). A few weeks later (or was it over a month? I can't remember the dates I was too tired!) The doctor told me to bring the baby in he had to tell me something. IMMEDIATELY we went into panic mode. All kinds of thoughts ran through my head... We all knew something wasnt right..he was kind of (for lack of a better word) he couldn't support his neck like most newborns can or anything....if you laid him down on the bed after a bath he stiffened his arms and legs out Photobucket so to the doctor we go...We were blessed to have Dr. Young as our pediatrician who I will reccommend to anyone in the cartersville/acworth area. Dr Young tells us that our son has XXY. It does NOT mean he is part female as far as physically.So he refers us to a genetic counselor, performs an ekg, and all that good stuff. Babies Cant Wait gets involved immediately and they are a GOD SEND ....they helped adam so much through the first 3 years of his life. We take Adam to the Heath dept for his hearing test...he fails....take him back a couple of months later, fails again...they end up having to do an ABR hearing test (google it...i dont have time to explain it lol) and find he has moderate/severe loss in one ear and borderline normal hearing in the other. around age 2 he gets his hearing aids finally!! at age 3 he started stars pre k in cartersville... I went round and round with that school until he ended up only going 2 days a week for 1/2 a day and he got his therapies outside of the school system on the other 3 days of the week. For the first 3-4 years of his life he recieved Occupational, Speech, and Physical therapy. I loved his therapists, every single one of them, but did not like the fact that they weren't optimistic. You've got to realize something about Adam....he's going to suprise you! They thought he wouldnt crawl until age 2....crawled at 13 months old was my mother's day present that year :). They thought he wouldnt walk until age 3. He was walking at 18 months old. They thought he'd have to be held back in Pre-k.. He is a kindergartener right now ....right on time. We may hold him back this year but not because of learning concerns but because he's pretty immature. Anyway children are resilient ADAM is special. Not because he needs special attention, or special help...but because he is a gift from God! He isn't perfect. Some people would say that he isnt 'whole' but he has taught us so much in his 5 short years that have taken us a lifetime to learn.

My first blog about my life with a special needs son ;)

Ok so I'm not really good at blogging yet...maybe someone can help me in that department. This is my first blog about raising my son, Adams, who has special needs. I started this blog with the intention of raising awareness for XXY (Klinefelter's Syndrome) which my son has and also so that parents, children, family and friends can kind of see into our lives and maybe someone will get some understanding on what life is like for us. I welcome everyone's comments... and honestly if you feel like a blog is "about" you ...well maybe you should think back on things...not make a big deal about it but keep it in the back of your mind to watch your words and actions when it comes to families that have children with special needs.