Friday, April 10, 2015

still kickin...

Here I am...
Well feeling alot on my plate..not only with Madie and just wanting to whisk myself away on one of those Eat Pray Love journeys...or a beautyful white sand beach with a cold drink and the blue water with handsome strangers bringing me towels and massages...shoot.A place where I wont feel like a fatso in my bathing suit! throw in a crazy love affair..why not!

Things are going...its still cold and the heat is still cranking out oil that I have never had money for and bills are waiting impatiently to be paid...a new laptop feels about as far fetched as a tropical vacation! :(
Madie continues her grand maul a week trend...and its just how it is...what kills me most is that for a LONG time it was good....now off her keto diet feeding her tons of sugar and carbs to try to put some weight on her small frame...its how it is.
Talked to her school social worker and she was going to see if Madie qualifies for anything weathor it be services or money for this and that...says I deserve these things...
A non working mom with bad anxiety and living on her alamony..I feel people will look down on me and tell me to JUST get a job..get up and work while Madie is at school! I try to explain that its hard for me to jump up and join the workforce...I feel like a loser. Some have no idea how much school Madie misses....when she gets sick its for a WEEK...when she has a seizure the night before she is all out of sorts the next day..maybe Im just making lame excuses. throw in apointments...we are about to add two more new doctors to the mix..a GI doctor and an orthopedic doc... going to get her fitted for AFOs and with GI talk G-tube..and possibly back on keto diet but Im not sure yet...
I am so worried with her seizures and her growth.... it makes my brain wizz.
Then throw in the complexity of Miles and I.... sigh. that is a whole other 18 hundreds pages.
Spring/winterthatneverends break is this coming week...I had no idea of this till a few days ago so really did not psych myself up for it but its here. rumors of 65 degrees but I have to see to believe at this point. ugh.
Sorry to be such a debbie downer.. just feeling burned out. I dunno..feeling lonely for love and family. trying to stay afloat. Hope everyone is well and healthy and hopefully warmer than we are.
Have to add a happy note in here and say I had a pretty good Easter. last minute drive to Jersey to see some family folk. was pretty good time with LOTS of food! seeing all madies lil cousins was a hoot. hilarious kids! Patrick sang his Easter Jesus song while Gracie plugged her ears..LOL sooo funny! felt very blessed. :) I hope the summer brings beach trips and family get togethers. I miss it so much.

I guess thats all I have to ramble about today. just me and kiddo tonight and we will see dad tomorrow :)
hugs everyone

till next time.

me

Thursday, April 2, 2015

Eeasterr

here I am. No real set plans for Easter...may stick around or go to Jersey and see some family. uncertain.
Hope everyone is well..Im pretty tired today..have kiddo home with god knows what illness this time as she sleeps the day away only popping her head up if I put my head down so I give up..like really.
Seizures have been the same at once a week I am spent. My surrender flag is up. Another G>I apointment next month and if there is little weight gain I want to try the tube..I cant take it. baby girl is 8! she gets sick so much and the seizures...ugh. will they ever stop?? her teeth have been bothering her too...not falling out...not growing in..I surrender to that too.
going to start making foods for madie...whatever I eat pure` that moe foe up! I have already made chicken noodle soup and apple sauce. yummm but will she eat them? prolly not but we shall see..
Can you pump in pure to the gtube? I wonder...
Anyhoo..not much to ramble about...Had Madies school meeting and her oral motor has been shot ouyt the door as of lately shehas no tolerance for any type of mush food in her mouth. nor will she let therapist touch her face...full meltdowns.
The meeting itself went well...it saddens me when they say the kids spend less time with Madie as they get older and their brains are busy learning science and reading etc...it breaks my heart that Madie is the way she is...I wish we could have some kind of breakthru but truthfully shes 8 and still doesnt do the majority of things the other kids do..not even eating real food...I think for me hardest thing is her inability to walk...run..play..explore!! I would buy her the best sneakers out there... my hopes diminish sometimes..I wish I knew. Getting her AFO'S has been suggested to us to help give her more support when she is in a stander as the backs of her ankles bend out like shes in a skiing position instead of being locked strait..so0o thats another thing...sigh.
she is certainly a girl who knows what she likes...and makes it known when things arent going her way. She is pretty ticklish too on her feet and loves noisy toys like rainsticks and vibrating light up things.
Ohh my little bug. Oh Mama..
Shes also a great hugger.
I dunno... I can hear my princess awake now and dont want to get her angry..lol Hope everyone has a great Easter. I basically forgot about it till last week!
Till next Time.

Tuesday, March 24, 2015

Its goin!

Ok here goes...im getting alot of error messages and typing on a teeny tablet keyboard...my awesome mother in law gave me this lil tablet to get me by with no laptop..which I broke the screen on! Each time I get all excited to buy pretty new Dell laptop a bill doubles or more bills come and I get swamped and it becomes no way in hell that I will get a laptoop...and by no means is it the tablet failing me its my joke of an internet provider..lol
Anyhoo... all is going in the ville..Madie is compleatly off her keto diet and I cant say I am jumping for joy about this cause it really helped her seizures..poor baby girl has a big one every week like clockwork...every week. The bottom line was she was not growing..her weight had stayed the same for year! It was kinda scary...we went and exhausted our options and it came down to G-Tube in her belly or no more diet...It was very frustraiting..I felt alone in the decision but knew that I was not alone at same time...I know Miles does not want to give her the G-Tube and I dont blame him...I want to give Madie a chance OFF the diet very badly but to see seizures is so hard..When I am here alone and its 3 am and she is seizing I am literally sleepwalking into her room and i turn the music on and make sure she is covered up and her diaper is dry then let her ride it out...sometimes I goy back to bed cause Ijust dont want to watch and I am sleepwalking.... sometimes if it hapends earliere I sit with her and comfort her till she falls back asleep...then I get sad...nd I thinka I am comforting her who is comforting me? The cat?:(I become resent full twards Miles and its not fair. seizures aren't fair! Its no ones fault she has seizures..
.
Madie has been doing OK..hoping the illnesses are behind her..this winter is still going I CT and I am trying not to loose hope in Spring and Summer....hoping we have a season that is longer than a week..bah.When Madie gets sick she usually ends up on antibiotics to nip it in the butt after one too many days of being sick. Poor kiddo.
She has been good lately...happy and drinking her Boost well..knock on wood!
Miles and I are OK too... Its complicated sometimes but I still love him and worry about the jerk sometimes...lol I still don't really understand him....he puts himself into work and still sees Madie every weekend with ocasional ski trip or Sunday flight out to the windy city...but we are always in touch. Its complicated. Lol
Anyhoo...its all quiet here and I'm kinda lost in my thoughts...maybe I do isolate myself a lot..maybe I have big fear of letting people in..with fears of rejection! Or would my therapist say I have Abandonment Issues! Yep. Maybe I am protective of my world...maybe I just want a simple life with family and lots of love...Is that needy of me? :/
Hope everyone is well... no sickies and dreams of spring hay fever..lol Gonna make a late corn beef dinner this week and hoping to break out of isolation as well.Whos hungry? Just me and kiddo Friday night as Miles is going to a fundraiser that raises money to dig fresh water wells to Africa! I asked him if he would go to Africa on this mission and he said hes not gonna pay to go there on his own dime...lol I told him he better get shots in case he digests the poo water...yup. it went on..LOL
Alrighty....typing is getting tricky on this lil thing...glad I could get a few blabs out today. Till next Time.
me.

Tuesday, December 9, 2014

Holidays Shmolidays

One of the hardest things about my little family not being under the same roof is when the holidays roll around... I need to get over the fact that I am not automatically going to family gatherings anymore...that I am flying solo.. :( I miss the other side of the family so very much and try to not thing about it too much..
For thanksgiving he did not want me there...he said he"just needed the day" I have to just try to understand it.. but I wont lie I cried the whole day wishing I was there... I LOVE turkey day and I love cooking some killer side dishes and pigs in blankets and eating tons of cheese and crackers and seeing family....
I decided to make the best of it ...I made my own turkey! I went on my cool AP for Target called CARTWHEEL and got some mobile coupons for oh..nothing big..5%..10% off certain food items... I say I did all of thanksgiving for under 50 bucks. It ended up me and one friend who came over and we just ate and had some wine. It was nice and she was nice to come over. Oh and madie was with me too :)
Its really hard to imagine all this long term..Is this LIFE? IS there anyone else out there for me with half a brain? Is there anyone else who I can love as much? I really cant answer all that right now.... Some say GET OVER IT> MOVE ON> cmom JAIM you can do this!
Sigh.... Cut me a break eh! lol. I still love him and I still get nervous when I see him...I still try to imagine how life will be...I cant give anyone a guarantee that I will have another love right now. It not really in my cards... Solitary is ok right now. I am ok with it. :(

As Christmas comes along I am looking forward to a "Very Jersey Christmas" as I call it this year...Every year its so worth the trip. I miss my side of the family very much as well! SOmetimes Chritsmas is the only time that we ALL can get together...And as far as bringing Madie I really dunno yet..Its alot of work and its a very busy day... This is all a week before actual Christmas so I am still uncertain if I will see his side of the family then or not...I try not to think about it too hard and just see where it goes. :/ Wait for the invite per say??
No matter..I am blessed with SUCH an awesome family on both sides who love me and love madie. Although we dont see each other much anymore we are still and always will be family. IT means so much to me...Family. Maybe its why I put up such a fight with Divorce...I JUST wanted my family to stay together...:( It meant the world to me. I had to realize that I cant change a person...that I had to take care of ME and having a bottle of wine a night was NOT the way to do that. OR for Madie...who needs her mom!
My sweet girl is sick today and sleeping on her blanket next to me..I call it her Blanket Oasis... lol She is snoring thru her stuffy nose and I could not love her little self more. She keeps poppin her head up in typical madie fashion fighting her nap...but she overall in a decient mood..Ya still reek of sickies kiddo! lol

In Seizure news...well they have not been great...one a week..past month... :( We have been messing with her diet...Nutritionist and Doctor wants her OFF her Keto diet...Yes OFF. Bottom line is she is not growing and is not gaining weight and it is not healthy..:( Our choices were: Begin a regiment of Boost Kid Essentals 5.1... OR get her on the Gtube continuing the Ketocal diet....
Before I opt for tube in madies belly we are trying the BOOST. And with the messing around trying to just GET the stuff ordered and get enough and having to stop and continue due to ordering problems....sigh.... and the one seizure a week while all this is going down...is not encouraging. I also want to be on the same page with Dad about it too...
Now there are thoughts of what if the tube causes problems..what if she has it FOREVER? what if she NEVER eats real foods? What if what if what if??? :( SO....slow and steady one boost at a time...we wait. and pray she gains ANY weight..
IF IF seizures get even worse I am not going to hesitate to get her BACK on the diet...And sadly opt for the tube. I cant and wont watch her go thru seizure overload. Its a gamble. Its scary. I try my best to do this and make the right choices... Dad and I DO talk about it and are in an OK place and we dont hate each other (I hope) BUT I am the one who sees madie all week...IM the one who would have to clean and make sure her tube is ok...and worry while she is at school too. I feel she will be ok! I really do! I think it will help. AND if she was ON her Keto and getting the FULL diet instead of the half sippies she would eat.... the G.I team would be very good helping me figure it all out and ease my fears... and Madie would grow! What will this kiddo EAT? Nothing really...and if ur lucky enough a few spoonfuls of mush food...:( Very frustrating. I feel I have alot on my plate and I just try to go one day at a time...its all I can do.
I still have my days...and its been little over a year since I let him go his way....and I am a stronger person but its does not say that I dont miss him alot and wish he was here with us... I dont think his grass turned out greener...
I am going with BOOST Kid Essentals 1.5 with hopes...but I just dunno yet..Im kinda nervous about it. My Gut tells me we will end up with G Tube in the end... I dunno... TO be COntinued!
Well anyhoo.....Just want to get thru the Holiday standing tall and strong.
The Tree is up and plans for a Very Jersey Christmas are in full swing..
Hope all is well with everyone and all our kiddos..my tummy is hungry so time for something to eat while madie sleeps.
One Day at a time.
Is it just me or is a new post like a fresh brain fart....LOL

Happy Holidays Shmolidays.
BAH>
Me