Tuesday, November 3, 2009

Bell notes....

Well,it still doesn't seem real,and I hate being so far away and out of touch with the children.Life isn't perfect I know this fact,but why can't you be here so it'll be a whole lot closer! I want so much to be able to do more and just aren't able to at present.Would there really be a better time for this to be happening,yeah,as a matter of fact there would be........in about 50 years I'd be able to better accept it!!!!!! I'm still quite angry at the fact that you can't be here with us all.I do realize that I don't have the right to question,or even the capacity to understand why things happen the way they do,but luckily I'm human so I do things like this anyway!J is doing her very best,and she's right next door.She's trying to be a strong force in their lives without being to in your face.I know why you wanted us to meet,and I see how she helps fill in my weaker sides.I'm learning from her,but I've got my lil'posse wanting my attention and needing my income.Yet I'm still trying to plan my time down there and angrry I can't make it happen right now!

I also feel you pushing me to take care of my wee peeps as you always say they come first!They've kept me going,and I'm trying to do my best.I can't believe how much your presence in my life is missed,I check my phone with every ring to see if it's you......I can't accept that you'll NEVER call again!I'm not ready,we have so much left to do,our children too!I can't accept that you'd rather be anywhere else in the universe than with your children.........What can I do?Show me what is worth the pain of your loss to them,and all of us who truely love you,I know where I'm going,even though I've joked lately that I've got 2 excellent ins now I'll surely get in!I know the truth,that's why I question!I've learned to push things down and hide them away so I can deal with them later.What I'm wondering is when will later come?I'll talk to you later,I've got to call your folks and check in.Love and miss you,call me sometime would ya! xxx

Floors,walls,door knobs & roofs!









The floors have been finished,my friend Walter did a FANTASTIC job if I do say so myself!I have to say I've got some GREAT guys in my life! Thank the Great Spirit for them! My guys ROCK!The house isn't finished by any means,but the work they've done is great.They start early and finish the day late.They help after their days work is done,they leave their families to come help ours.We are truely blessed.I do wish we had more help so they wouldn't feel like they've got to work so hard.The colors we chose look great together,atleast we all think so.Soon enough the basement will be built back up as a new bed room for the D-man,and a large play room for all the kiddos,and still have storage and a great work shop for papa!We are so psyched!There are pics up over on my FB account,haven't really got the time to switch them around and add here yet,but asap I'll get some up here.

My guess is we did good finding theis place as everyone who ses it says WOW,you guys lucked out! We feel extremely lucky to have found this place and made it through the bidding war & closing battle so that now it's OURS!We can't wait to enjoy the outdoors there,get our garden going and place a chicken coop for our chix! I have already picked out the ones I think will be good for us,orpington,silkie bantam,sussex & easter eggers!I'm very excited to see the childrens reaction to our little egg makers! until next time,enjoy all that has come your way! xxx

Friday, October 30, 2009

Moving forward!

Well the appliances arrived yesterday,man are they slick!!! I thought technology was suppose to be helpful,I've got lots of reading to do before I can even use those fancy dancy implements of goodness!Our friend Jim is painting like crazy,thank you Jim!He's doing an awesome job!The Man and another friend Walter are starting on the wood floors,so now we're really moving forward!I've got more packing to get done and then hopefully I can get over there during the day for some pics!!! Fingers crossed!

Kiddos are all excited about moving in so we hope it's soon!

Tuesday, October 27, 2009

Days go on.......

Life must go on wether or not we like the way it is.We must try to find those things that bring us joy,embrace them for all they're worth and enjoy them while we can!Life and time is fleeting is the lesson I've learned most recently and even if we're not ready people,loved ones leave us when the great spirit calls them home!I'm still so very unsure why my dear friend had to leave now,and this way,but I'm so thankful to have had her.I still can't imagine that she's not ever going to call me again,even though I know and yet I wait still not hearing.I so much want to be with her children,and have them playing and growing near my own.I want to share with them who their mom was while we were young.I want to share tril rides with these lovely humans she brought to this planet,picnic in fields,hike & letter box.Learn to cook along side them,I feel I'm constanly learning here!

I was so very excited about buying our house while my dear friend was looking with me,she'd check out just about every house on line from her distance,and we were both glad about this one.The land was a plus,thee house large enough to accomodate us all with a room for her when she visited,a pool for our kiddos to play in,and that open concept we found so great as moms!I admit the excitment is diminished,but I'm trying to regain it,I know she'd be very angry with me for being this way.Knowing that she'll never see the place,or grace our door is very rough for me,I'm hoping her children will get ot come over the summer at some point that'll be great!And so to this vein we are continuing to make this house our home! We are having a bit rougher start than we anticipated as the old owner is still inresidence and moving slowly.Our floor work,and painting must wait on her,so then our move in and we're running out of time & money!C'est la vie,I guess aye!

I'll try ot get some pics up of the place as we improve or make it ours your choice!Gotta run now!

Tuesday, October 20, 2009

Hello out there,I might be here!

Well it sure has been awhile since I've been here to jot down my thoughts.The summer ran by quickly with the soil from my front garden down the sidewalk with the rain.We got our puppy from my dear friend,we had a great family trip to Pa to get her and visit with my friend and her family.We had hopes of returning for many more,our children all seemed to enjoy each other,my children really seemed to like my friend.The sensory issues came into play while we were there,but I think that overall we had a good trip.I hadn't realized how much I loved my friend until that visit,or how fantastic of a mum she was.I knew she was a great mum,and did everything for her children,but it was even better being there in person seeing her in her element.She was wonderful with my boys,my lil'Duke just took to her,and NoNo,well he had a serious breakdown because he didn't want to leave!He said I love her,and I love her kids mumma I don't want them not to like me I don't want to leave,I want to stay here longer.....Please can I come back to visit her and play with her kids mumma,PLEASE! I hugged him held him tight let him cry through his tough moments and promised him he could,that WE would come back,and they'd come visit us!We collected our puppy and came home!

The rest of the summer flew by what with our house hunting,and appointments to get the boys the right support in school in the fall!We missed getting together with them when they came for their summer visit with their grandparents,school started and life got even busier with being under contract on our new home,and all the driving for all the boys.The big guy got into the Alternative High school,and he's doing wonderfully grade wise,he's started therapy at the clinic.The Duke is just blossoming like a flower,we see new things daily with him,the boys are trying to find their way in kindy,and still going to clinic once a week.I just don't know how other moms do it!I struggle daily to get through the normal day-to-day stuff.I don't have time to get on-line everyday nevrmind multiple times daily,but others can manage,along with their other various dutiies as mom,and squeeze in jobs,and moms taxi drives I sit in awe of all of you fantastic mothers!I beg you to come help me organize,and share your wisdom with me in my messy toy covered floors,piled up laundry with dirty-laundry monster,sink full of dishes,dishwasher half loaded,beds unmade,no schedual to really speak of,mom taxi all over town house!

Some people really seem to be able to do it all,and I just don't have a clue how they do it.I hate the phone most of the time,I do the very bad nono of using my driving time to chat or get some phone errands done!I know,I know,I know this is a very bad thing!But I have to say I'm glad that I have always kept that available to my dearest friend!Any way she could get ahold of me I made available to her,and will never regret doing it!We myspaced,facebooked,twittered,txted,and phoned via mobile and land line!Crazy,well possibly,but I wanted to be available to her if she needed me!Turns out we still missed each other from time to time,but atleast she could get me and we could reconnect in a few!She was one of those moms who can do it all,she had a daily chore list like none of you have seen I'm sure,and yet she still smiled and held out her hand for any in need of her.She is truely an amazing person,she even had a church family and a strong faith that she shared on a daily basis with out being preachy,or ashamed as some are.Her children were well behaved because she loved them and expected them to behave.Her friends all love her,because she was an amazing friend,always there with a hand,a shoulder,wisdom of her faith,any support you needed she had to give freely.She was a devoted mother and wife,a loving daughter and sister a generally GOOD person,and I LOVE her for all that she is,and all I hoped we'd do together.

I got a very terrible phone call from her husband 15 days ago telling me the worst news I could hear,her life was taken!She was not with us any longer and he knew she'd want me there.I couldn't really comprehend the information,my legs crumpled and my hands shook as I had to listen again and gave the phone to my DH so he could tell me I was wrong! He didn't of course,he held me and wept along side me.I had to know more,I had to talk to her husband and find out what I could do.Our thoughts went immeadately to her children and parents and how could I help them?I tried to function and care for my own family,but my mind was in total chaos actually I think it still is!Her church family stepped right in to assist her family,and friends of her husband came to his side.Her parents said come when you can,the house is full and we're trying to manage with the children.We are not alone,so please don't worry!!! Even in their most darkest moments they have grace and concern for me and my family.I love them too.I got to them with another old friend who seems to be there when he is very needed,I feel so lost without her,and so worried for her family.I'm so far away from them and am limited in what I can do,but so want to do everything for them.She'd be so mad at me for being so down about this.She'd tell me to take care of my children,and don't worry about her,just like I'd tell her about me!!!She was happy about our buying the house,and kept pushing her horse on me.She wanted him to be used and loved but to still own him,so I was the perfect solution for her!She so knew how to get her way!!!!

Well I'm here but not sure how long,I'll try to be better,but we are having a closing soon,and so then a move.Much to do in the next few months,but I'm still trying to be happy but find it harder than before,and I'm getting up and functioning for my childrens sake,but feel so helpless and useless and even poor at my own job as a mum!We'll see how things go and I'll try to be better,more like her,she's definitly one to strive to be like!I still haven't said goodbye as I really can't,and when I go to her place it feels like she's still there,I love being there,I miss her daily calls and txts,and FB has lost it's fun,but I'm staying for her!She brought alot of people together and I'm greatful for meeting them,and re connecting with others.My boys don't really get it,and so another goal of hers is that I'm trying to find a church that'll fit with my beliefs yet can explain this situation better to them.Life is a crazy up and down roller coaster,and I'm trying to saty in the damned car!!!!

Sunday, June 21, 2009

Birthdays,movies and rain

My cousin and her hubby came to help celebrate the babies second birthday.Like most of the childrens birthdays,and christmas,we had our traditional 3 cakes and small parties.We can never seem to get everyone to commit to coming the same day.I've given up trying to tell you the truth,so yes our children believe that everyone has 3 small birthday parties and gets 3 cakes just like they do!Also I'm worried that they may start to think Christmas is more like a week instead of a day!Must work on that!!!

My cousin is great though,she always tries to make it an easy visit on me wether we go to her house,or they come here.They brought this wonderful banana bread baked french toast yumminess thing,with cantaloup on the side,and they even brought me a fantastic ice coffee!She spoils me and I so don't deserve it,but SO LOVE HER FOR IT! She is the BEST!When they were getting ready to leave,I was trying to get the boys in to wash up as I was going to take them to see UP,courtesy of my neice another nice girl!Well with some to do about it we got in and washed and then into the car to go get Gramma who said she'd stay with the babies while we went,as papa was at work.The boys had never been to a movie theater before,and with their sensory issues I wondered if we'd make it throught the film,and by GLory we did! They were little champs,they got up and fidgeted a few times swapped seats and sides a few times,but thankfully SMITTY"S is actually set up for this type of moving around to not really bother others.Also the reclinable car seats were fun for them to play with and comfortable too!I think the highlight of the movie for them though was when their cousin came and sat with them and shared her reeses pieces with them.They all share the same birthday,and they think she hung the moon,stars and the SUN!

We woke up to a very rainy day cold rain,not warm so we stayed in watching mindless tv on animal planet,Disney channel,and Nickelodeon!They did get a bit worked up and need to jump on the trampoline alot,and they had mini relays with each other through the house,but over all they were pretty good.I'm working on geting house rules,chores,have to lists,and scheduals set up and all written down on poster boards so that everyone who helps out with and loves them will all be on the same page and we'll keep the rough times down,maybe! Well I can dream can't I?!Hoping the sun will shine again soon so we can get out and play and walk,hike and bike!!!

Saturday, May 30, 2009

surprise book!


Wow,look what came in the mail for us! We won a contest we joined on MothersClick.com This is a fantastic book with all kinds of cool stuff hidden in it.The boys are LOVEING it!Take a peek

Thursday, May 28, 2009

some cool sites to check out!

here is a great contest,and cool site check it out http://mommosttraveled.com/recaro-vivo-giveaway/

Here is a great site for Maine moms,and others, http://raisingmaine.mainetoday.com//

Definitly check out this site she is fantastic with the coupons,I'm really taking notes,if she can do it I can ........I think! http://thirteenandfrugal.blogspot.com/

Check out this money stretching mama, http://jane4girls800dollarannualbudget.blogspot.com/

Tuesday, May 26, 2009

a great site to check out!

so you gotta check out this site if you too have multiples! check out the give aways are back! http://www.gotcrazytwins.com/?p=909#comment-810
Great site you'll love it!

House hunting?

YES,That's right we're house hunting!We are hoping to find a lovely little place with a bit of land to call our li'homestead!We have a few that are at the top of our lists now,and waiting on application with first time homebuyers and rural developement to result in our certificate for us to be able to make a bid.We want to be as self sufficient as possible.We'd like to have a few chickens for eggs and such,and ofcourse a lovely garden to give us an abundant of fresh herbs & veggies. I found a lovely organic apple orchard this weekend,and am hoping to plant a couple pretty harty type trees on out land when we get it!Say does anyone know if we can grow lemon trees in Maine? Whenevr I see lovely fruit trees in bloom that PPM song jumps into my brain,"Lemon Tree" I've just gotta have one so I can sing it every morning!We can picture it all dogs romping with the kids and chasing chickens around the yard as mum works the garden,while papa and Dman chop and stack the wood!Quiet evenings around the fire pit swinging or gliding watching the stars from our own yard!Not sure life could get much better,unless there was the soft sound of horses chewing and nickering in the pasture and the soft lowing of a Scottish highland or two along side them! Ahhh,yes still ever the dreamer!Wish us luck and keep us in your prayers!

sensory evaluations!

Hello all,it's been awhile again.We brought the boys last wednesday in for their formal eval for a sensory dx. Looks good for them to get to go to the clinic during the summer for one-on-one time with an OT of their own.Meaning each will have their own OT!YAY,for them!They'll both get what they need now.I'm so very thankful for Diane for getting us on the right track!The lil'guy goes this wednesday for his eval,and in June the oldest goes.They would really like to see the big guy as it sounds to them as though he was a missed sensory kid.Well all I can say is if it helps get him back on track I'm all for it.I know he's very frustrated with how school is going.

The boys start kindergarten next year,and I'm hoping to have everything in place to make the transition easy and the year go well for them.I don't want to have to battle with the school system for another 9-12 yrs.The boys are very happy that school is over for the summer,and looking forward to having play days with their best-bud from class.We'll be looking into summer day camp again hoping to get them in with kids from last summer to make that transition easier.We're looking forward to camping this year,hoping our cousin will come with his family and getting in some good hiking,biking and of course some fun letter boxing!

Wednesday, April 15, 2009

Amazing first pony experience for Princess P

Well we're still going strong with no tv,and my wee ones have actually stopped asking for it,or gesturing for it as the case maybe! The boys too are doing well,accept in the van they feel there they should ask for a video.We have taken them out to a park almost every day this week,as well as they've played outside more this week.Without the option of tv they're choosing outside play.They ask us to go to parks,as we've found some really wonderful ones around us that they love to go to.They have the added plus of being great for the younger ones as well.We also got some great library books to keep us going trying to really get the mind tvs working for these guys.I wish for them to experience books the way I did,I use to feel I was in the book,the writting was a vivid picture in my mind for me.I wish they could enjoy it as much.
We went for a picnic hiking outing this afternoon.We packed the lunch up grabbed them from class and headed out.We decided to stop at a friends farm and visit with ponies and her new foal!The boys enjoyed the farm environment as a boy should,dirt, animals,tractors,mud and room to run and dogs to run with!Does life get any better?Two of the boys were abit nervous especially the noises the horses make are loud in the barn,and unfamiliar so papa took them outside and walked around and visited with ponies outside.They all handled it well.My lil'wild guy proved to be pretty brave and inquisitive,which was great!They got to brush a pony if they wanted,and sit on her too! Wild man took advantage of this and then decided he'd join papa and his brothers and off he dashed.Now let me play out the princesses response to this visit.
Once she was out of the van on her feet and noticed we were heading towards animals in the distance,she was trying to get in full run mode while yelling excitedly and pointing.I don't know if she realized what they were from the distance,but I can tell you as she got closer her excitment did not diminish! When we realized there were a few yearling foals in a small paddock close to us we walked over and an older pony there to babysit no doubt greeted us first with a muzzle thru the fence,well Princess P grabbed the big soft nostrils in each hand and pulled her face in for a full cheek on nuzzle!I just melted,she was not afraid,no fear at all she even let babies wuffle her hair and cheeks! I was speechless and in awe of this small person who I love so much and didn't think I could have anymore emotion for and yet I was over come that my princess seems to have my love of animals and horses!!!YIPEE!!!!Since my own days in Pony Club,I watched my friends with their parental supports and not having any just couldn't wait for the day I could be a pony club parent! I may actually get my dream.I know I'm insanr to pray for bankruptcy,but I can't help it,other horsey folks will understand,I'm elated!
Oh and that wasn't all,let me continue...with perma grin already firmly inplace we walked thru the barn with Ms.B the owner and a friend to her new foals stall.Well when the door opened and P saw not one lovely pony,but TWO and one her very size I literally had to restarin her,and she threw fits trying to get INTO the stall!!! It was amazing,poor Ms.B trying to get the foal closer and keep kids safe and momma pony happy!It was a site,but it sounded awful but was actually quite sweet as all she wanted was to get close to that baby pony!I could have cried I was so happy she isn't afraid of those big heads with those huge nostrils blowing warm sweet horsey air on her.Horse people will get this and understand.Next Ms.B brought out a pony for the kids to pat and brush and of course P took to it like she'd been doing it all her life,did you all remember she's not even 2 yet? Just checking,anyway,wldman and P brushed and then he asked to sit on her and he did this was not acceptable to P she wanted to be up there,and said up!Well she put her up there and then wildman decided he should go see papa and the brothers,so off he shot,and P decided since it was just her she should be able to move! She started squeezing her lil'legs and rising up and said out,she wanted to go for a ride!Ms.B was as impressed as I was I think.When brushing the pony,P stopped and hugged and kissed the ponies front leg,after all that's all she can reach at her height!Ms.B said I've got goosebumps that's so sweet!She kept getting under her head trying to touch her lil'pony nose,but they were both just too small to reach each other.It was one of the most precious times I've ever wittnesed.I'm sure it's happened before that a wee girl or boy has so loved horses so much at first meeting,but I can't recall ever seeing it.I do know it felt akin to my first meeting with horses.I hope she has this love forever!
Ms.B took the kids for a ride on her polaris mule tractor thing,and well it was a huge hit!The boys and P all enjoyed themselves,and the boys both asked to come back!Yay!I think we'll be going back routinely on foal watch as she's got a few due very soon!Then we said our thank yous and good byes and headed off for a snack and a walk in the woods!It was great weather for it and the babies walked the whole way,as they got tired P got independant,so just a little letting go and watching for the right moment to take the hand again,but it was great to be out with them and have such a nice after noon.They all enjoyed themselves,with really only one small melt down,only one boy got a trail map and so the other wanted to get one when we got back ok no problem,accept that what he meant was he wanted to get a map and go back out so he could pick which way we go!!!!Small melt down,but luckily some of the junior cub scouts were still near the tables and it took his mind right off of it and we all headed out together to the parking area!We had to promise to come back soon though! I love spring and I LOVE my twintastic life,thanks great spirit for a wonderful day without TV!

Tuesday, April 14, 2009

No TV for a Week,WHAT?!?!?!?!.......yup!

Well I know that next week is the week with out tv thing,but my oldest will be with his dad,and out of my control,so we moved it up to this week!DADADADUM! He's not very happy,he is a video game junkie!Literally he has no ability to control his time playing,and he gets very angry when you make him get off,he gets over it well though,but his initial response is crazy.I did expect a hard time from him though so I'm just staying strong and we'll get through it.I'm actually getting more flack from the little kids than I expected though so now I'm extra glad I'm doing this.
Papa played outside with the boys and baies after the boys came home from class until he took Nono for his speech,the good news is next week is his last appointment.I guess she feels he's met all her goals for him and that's great!D man went fishing with his friends after school,and that lessened his gaming drive.We took the lil'kids to one of their favorite parks to play,and as they snoozed in the van we took that time to look at a couple more properties.We'll hopefully be going for a couple showings later this week,we'll see.
I got a surprising snap from papa when after I put the boys to bed I came down to find him playing chess on line,we told Dman no comp or vid games and here he was playing- which is really wierd as he never does this.I mention he shouldn't and he yells you do these things just to crucify me!What a choice of words!The man who says he doesn't watch tv was at a loss with out it and thus spent the most time he has on computer.He made me say we can use comp for email & educational reading & researches.I was ok with no comp as well. This being only the first day,I'm pretty sure they all just are trying to adjust.I know it's really for the best as we apparently ARE watching too much TV! I read alot to my snugglesaurus boy,and he and princessP and I danced around alot in the morning.I even banned the video in the van for the week.The kids wanted to watch it as soon as they got in!Praying for nice weather all week so I can make it through this trial for my family.I have a few trips loosely set in my mind,and good projects we can all work on to keep us busy and am hopefully getting the book Tale of Despareux for week long reading to cap off with movie rental for sat eve with the littlies as D man will probablly be gone by then.On his way to sit for a week in front of a tv playing video games until his eyes pop out his dad WILL let him!Well atleast this week I can give his brain a much needed break from the constant bad stimulation!Hope you all have a great week,and I'll try to keep you up to date.

Some Easter fun pics!





We had a great day just the children and me,poor papa had to work,and he wasn't happy!We all the children and I worked on these.YES,even the grumpy D man! He did a great job,and was pleased with his outcome.I'll get a pic and post 'cause I'm so proud of him! Anyway,the little boys got in bed with me,and I read them a wonderful book called The First Easter,we picked it up at Wally world,but it was actually a great book to try to really explain the day's meaning to 4yr old twin boys with sensory issues.Not scarey,nice pics,and fairly easy for them to grasp.We read it again at bedtime,and I read it at bed time tonight again,it's getting them asking questions and sparking those neuropathways to keep firing.We rested in my bed a bit then drama king wandered down and saw the baskets and that was that!
He yelled to his brother as he shot up the stairs man that kid can move!The easter bunny had come and we gotta get the CANDY!!!They devored their goodies,well not really they played with their toys,had their egg hunt & found their new movie,watched it while I dozed.Gave D man his basket after waking him up,and then opened their baby bro & sis character eggs to make it easier for them! Aren't hey the sweetest,thinking of the babes that way! LOL When I was in the kitchen after the babies came down and had their basket,I heard giggling and attempts at coercing their lil'bro to look at me!look at me,you baby!!!I wandered in to find drama king had found my mobile phone and was snapping pictures with it.They amaze me,it took me almost a week to figure it out and they just know what to do,go figure!I figured I'd add his handy work cause well it's pretty good for a 4yr old and a mobile phone!
I think they have way more fun than I do sometimes,and I'm glad ,as it reminds me to value and cherish my little monkeys daily and I DO! We had a lovely ham dinner,with lemon cupcakes decorated with whipped cream & springy sprinkles.I capped the evening by finishing watching Seven Pounds!Enjoy the silly pics,and hope you all had a great day!

Monday, April 6, 2009

Lukes journey III




















Here are surgery photos, in his room after surgery,his sister waiting for him,day after surgery,his nurses were amazed at how little bruising he had.Hanging with Princess P,and finally a smile!
Getting out of the bed for a ride,sleeping with his blankey & pouchy,tearing up the hallways around midnight.
Starting to take the bandages off,mumma help!!!
look at that lovely rounded head,finally free of my drooping visor!Fianally eating when sister got there.
Showing sister girl around the unit,finally busting out!Aaaah the real world,strolling around the back yard,and getting some papa love!

Luke's journey II








this is a pretty good shot of the shape of his head about 3 weeks after his birth.
good examples of the differences in their head sizes
awaiting his MRI,last pick of his mohawk just before sugery,and a birthday pic that shows his head shape pretty good.

Lukes journey



From when we first brought our youngest son home,we knew we were blessed,but we knew also that something wasn't quite right.There was nothing wrong,just something not right.You know that nagging feeling you get as a parent.Having had to battle for action with our doctor previously with the boys we were not shy about questioning him at every visit.We were told everything is fine,he's growing well and meeting his milestones we'll watch him,but there's nothing wrong.As he grew older we noticed that his head although it was getting larger as it should wasn't rounding out as it should,we did the rubbing during the first weeks of home life,and we changed his position often as we'd read to insure we weren't accidentally causing the shape some how.Some research into infant head shapes lead us to craniosynostosis.This is a condition affecting the skull,where the sutures fuse to early,making the skull not grow as the brain does.The result is abnormal skull and malformed head shape.
When correctly diagnosed if surgery is needed it can repair the malformation and allow normal brain growth without any neurological issues.Our son went undiagnosed until he was a year old.There are different areas that can fuse,and so different titles given,our little guy had saggital synostosis,the midline suture along the top of the head.He had a ridge at birth,which only got more prominent as he got older.Family didn't want to touch his head as most family love to kiss little ones on the head,people avoided his and most cousins questioned why he was like that.We had no answers at first.He also had a pretty severe hernia that needed repair,and underwent repair surgery at 3 months of age.Due to the hernia he was in pain often that he could barely move without screaming.I guess that could be part of why his skull issue was over looked by the doctor.We questioned at every visit though.We found it amazing that he had the exact same kind of hernia as his older brother,who was also a twin,and carried on the same side and was also the heavier twin.Pretty wierd huh? We didn't think about taking pictures of his head to see differences as we never saw changes,until we had surgery.
When we went to the twins 12 month appointment,we again questioned why the shape hadn't changed,and we agreed his head was growing,but it was growing in strange areas.His forehead was expanding as was the areas over his ears,and the back of his boat shaped head was becoming more pronounced also.The doc gave us one of those pat on the head type of ok,lets try an x-ray to shut up these parents. That x-ray lead to an MRI which of course lead to a neurosurgeon and surgery.We were very worried as the info we'd found to read up all talked about most children having this type of surgery before they were a year old.Our little guy was already a year,the neurosurgeon didn't think he had any neurological damage yet though.He did exhibit some behaviors we felt were maybe not so normal,but were informed they were nothing to worry about yet. He likes to rock back and forth in his high chair(slam himself back)he walks on his toes,and likes to lick windows and metal railings,also shopping carts,he also rocks back and forth when sitting on the couch,and when in a rocking chair he rocks so hard that it makes a slamming sound and moves backwards across the rug(we have a glider type rocker).I question more things these days due to our older twins who have lead poisoning and sensory issues.There are more posts about that on going journey elsewhere in the blog this is just for Luke,but wanted to mention why I question the docs so much!

Monday, March 16, 2009

Seems like forever!

Well,I haven't been on for a bit as the whole house has been up & down with some GI bug!It has hit everyone,and it's slow moving and very draining! The babies got it the worst,and are just starting to really feel better.My sister said it hit her house a few weeks back,so we could have gotten it from my nephew,or the boys from school,or papa from work,just no way of knowing,but I'm so glad it's moving on now,FINALLY!
I'll try to find some time to catch up,but still learning and exploring on the sensory frontier.Started playing the music therapy cd at bedtime with the babies first,and they're sleeping a little better.Will try with the boys when we get a used radio as they destroy everything.No luck with preschool yet,they still treat as behavior,I'm trying exercises in morning with them before school,we'll see.

Wednesday, March 4, 2009

Tuesday, March 3, 2009

busy work day

Well today was just a busy work day,I made phone calls to get things in motion for the boys CDS assessment for kindergarten readiness.We may end up with a diagnosis out of it. Having spoken with the lead nurse and her agreeing with the OT and me in that the sensory issues caused the lead poisoning.We want to focus school issues on sensory instead of lead as then they'll have a focus as to where to go and what to work on with the boys.They won't get labeld incorrectly,and no one will be trying to manage and diagnose my poor wee men as they go!I'm glad to see the CDS folks again,they were very helpful to us.I look forward to our OT talking with them,as with the Head start crew.I had a meeting with a nice woman from head start today,seems Marco Polo made an appointment and forgot to tell me!All went well anyway,I filled her in on what I want for the boys and the direction I'd like them to try. Got the boys next blood draw orders called in to the lab.All while mini super heroes flew around the house! The weeest of my wee folks were super heroes today thanks to papa! Left overs for dinner,followed by strawberry cake!

guilty pleasures.......







So I'm feeling like my guilty pleasures list is getting smaller.Kids grow,shows change or get CX'd,life happens,but we need our secret pleasures to keep us going!Hope you can share your secret/guilty pleasures now that I have!

* I loved watching "the Girls Next Door",scratching your heads? I can't explain it,but I loved it. It's now over as the girls have moved on....

* I love Dove Chocolate-I know so do many others,it's very yummy!

* Having a dog in our home,I miss my girl Scooter all the time.....

* Having horses of my own around....

* making yummy desserts to eat.....mmmmmm!

* girls nights with my nieces...movies,junk food,and being girlie!They're growing up and not much time for aunts these days,I miss them!

* watching the boys play Pooh sticks!

Enjoy your day,and try to squeeze in a small pleasure when no ones looking! I'm going to make a cake,and watch a GND clip while it's baking! hehehehe

Monday, March 2, 2009

my cousin's for a snow day!










Family fun snow day in
January at my cousin's
house with his wee girl too!

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