Tuesday, September 29, 2015

THIS is what the doctor ordered!! A couple days at the lake with my cousin and her lil daughter. Hands down so pretty! Madie was a good girl..had her moments but overall a good kiddo!
We just kinda sat and took in the scene...just a relaxing time. my cousin and I stayed up till probably 130!And with my lil poop holder in tummy pain at 6 am it was rough! LOL
Next day we took a little walk and lounged on the the lil beach nearby for a bit before we headed home. I always want to cry when I leave such relaxing pretty places...places where I just feel at peace...fearing that each time will be last time I go for awhile. Back to the homefront we went.
We have a lot of things to look forward to for sure! Trying to focus on that. Thursday we meet with the wheel chair guy and look at some new rides for madie! FINALLY! as the ol convaid looses screws and gets more and more scuffed up.. WOO HOO! And of course our TRIP! Oh I can close my eyes and see that sparkling white beach and that warm clear water and how much Madie and I will LOVE IT. How we will poke around the shops and have yummy meals and have a big cozy bed in our room to lounge on when it gets late.. Oh man! Sent some papers in after dad had to sign them and now I am still waiting to grab him for a few hrs to get our passports going! Hes NEVER able to go! And weekends the post office closes early...but oh we will figure it out no worries REALLY! lol
Um....lets see..
OH in couple of weeks getting that ol PEG tube outta there! whew. that dangly crusty thing is the life of me! LOL ok ok so its not that bad and I keep it very clean...but hey madie cant swim in the ocean with that tubie! :) :)! Also a nuero follow up which is pretty routine.. I swear that doctor is more like her pediatrician! Seizures have been pretty tame...knock on all wood products and products that LOOK like wood!!...Once a month she gets slammed...and sometimes in the mornings she has what I just call gasp seizures where she kinda gasps and falls forward whole self stiffening and then she gets back up...comes to her senses and it happens again...very nagging. and don't forget the head bonks on the side of her bed. boo.
I dunno kiddo...its just Madie.
SO yeah...
Still don't know who my lucky travel companion will be...I really don't want to go alone!? looking at the ol list of friends and its slim pickings...should I hold a raffle?? sigh..:/
I cant wait to see the dolphins!! And buy our picture too! :) my brain is on overload when I think about it. I never would have in a million years thought that after all that has happened the past...oh gee..three years...that Id ever apply for a wish vacation..Now if Reagans mom did not egg me on..LOL Shes in Hawaii NOW! :)
Hope everyone is good!
Well folks...I gotta get my bum movin..drag out the garbage cans and run couple easy errands..Ill keep you posted on Operation Mom and Madie to paradise or BUST! oh and pictures of madies new ride to come also.

Wednesday, September 16, 2015

vacations and Rambles.

Its been a month since my last Blog....
Let me just get my thoughts together.
I miss family ALOT. I miss the beach. I miss family dinners..they are the best! I miss laughing and shopping and seeing everyone on a spur of the moment..I miss game nights and BBQs... I am not included. And that is how life is. ALone. Downright depressing. Its a sad feeling. I still have a wonderful family and we all love each other so much but we barely see each other.
I sign into my blog and see the picture of my sweet girl...how I would do anything for her..how I wish things were different in so many ways.. But oh this kid..she keeps me going.

There are a lot of great things going on and I have so many reasons to be so very full of Joy..I still find myself quite depressed...I will stray from the depressing and tell the world (all 2 readers..lol) that Madie and I are going on a Make a Wish trip... we applied and we GOT IT> Off to Atlantis Bahamas in the next few months to see all we can see!! EVERYTHING IS COVERED. Gotta get the ol passports done and we BOOK it! I still don't believe that its real. How deserving am I of al this? WOW. and WOW. I don't feel like its real. NEVER in my lifetime did I EVER think I would ever go on a trip to the white sand beaches and gorgeous resorts...EVER again. I cant afford groceries let alone a vacation to paradise..
I don't know when we will go and I don't know who I will bring with me. How many people have told me that Miles should go with us I cant count...He would make the best helper for sure. :( But that's the scoop. I am obsessively making lists of what to bring...over and over..and gawking at the pamphlets and maps...

In Madie news..well its been over a month with her tube and she is doing just fine! We go to the GI guy on the 15th next month so she can get the button instead of this long tube hanging out.. my guess is that is going to hurt.
Next week we will go to Candlewood lake to relax and see my cousin and her lil one for a couple days..I really love that place. The house is lake front and has a nice deck to hang out on. Cant swim in the lake yet though with madies tube doh. lol but we will sure sit on the shore and the grassy yard. :) Have a lil dinner with my cousin and catch up.
Also going to meet with the wheelchair folks to get madie a new ride...!! I am so tired of the cruiser loosing screws and getting bent and just overall not being sturdy. BUt we are saying she has outgrown it to get a new one. THAT Is the story! lol.
Also a nuero follow up which is pretty routine....have her weighed etc..
I dunno...Hm...In no order..
In lil over a month Madie will be NINE. Yes NINE. Its her last year of elementary school and I don't want to think about it cause Ill ball my eyes out! I have thought about re locating after elm school is done...I guess to a more accessible place...a place where heat is included and there is no more drafty windows and OIL to beg for oil assistance every winter... A place with no stairs to carry madie... She is a lil sack of taters! lol Maybe a lil more than a sack of taters! lol But yeah. I also really love my town and the folks in it~ So is tough but Id also relocate for a lot of reasons...
SO in conclusion I try to keep my chin up and take one day at a time.
I hope everyone is well... I will blog soon...more going on but eh.. loosing motivation.

Thursday, August 13, 2015

Tubie Kid

Well its done! And I wont lie it was hard to get thru...
We had argued about getting Madie the Gtube for quite some time...and madies weight was not going anywhere..Everyone was so worried about her growth! There were lots of different opinions on weather to get this for Madie...too many to wrap my head around.. I just HAD to do this. I HAD to... it was really hard.
The whole surgery was 30 min tops... When Madie woke up she was very disoriented and scared...It was really tough to see her that way... I felt the tension in the little room was so thick between Miles and I you could slice it and spread it..... I knew he did not want to do this and I needed his support very much...I wanted to cry on his shoulder and him tell me it will be ok..that I had made right choice..that WE had made right choice! I couldn't let it break me down...I just couldn't. I knew madie would be ok and I knew he would be ok...eventually...We just stayed there and loved madie to pices and we were very much a family that weekend...
Day one was the hardest.. I opted to stay over the first night and would have gotten sleep if the machines kept quiet.. Oh sweet girl...in such distress. Saturday morning arrives and Miles comes in that morning while I go back home to sleep a little and eat something. Bed was VERY NICE. That day the nurses and various teams of doctors kept coming in and asking questions and gathering information... my head was pretty spun. We had hoped we would be sprung loose that day but to our weary tired selves we were stuck one more night. We both opted to stay over..both getting late night lessons in tube feedings. pretty exhausting but it was an adventure!
When I got home sunday after we finally were discharged and I had to go out of the way to Target to get Madies antibiotics and rush cause the PUMP was getting delivered that night I was pooped. The pump did not get delivered till around 8 so I kinda hurried for nothing which was annoying but we were all set! I was a little emotional really wanting Miles by my side helping me and being here..I just wanted hugs and comfort and a tall glass of wine...:( Maybe a rain check? lol
But I was here. I was a bit nervous on round one of this dang pump and we texted back and forth and he gave me a good cheat sheet... so...SUCESS! His Brain just absorbs the spoken word so much easier than mine...like I need freakin pictures and note taking...LOL Exhausted but alive.
Fast forward over a week later...two weeks after her surgery and she is doing fine!!
Its still a little crusty around the area but I keep it good and clean and she is drinking just fine from her sippy with minimal force feeds.... I am going to try to JUST use the pump at night... been doing four hour feeds and sure it goes off at like 1am and I am tired as all hell but she's hungry in the morning and I don't worry about her throwing up...cause THAT was a blast! I kinda blamed myself getting a little tube crazy and overfeeding her little tum tum....
She is her little usual self! with an annoying PEG tube hanging out...lol ON OCtober 15th we will go to Hartford and get the button put in..which will we MUCH better to tuck under her clothes...SHe has only pulled on it a few times and that kinds makes her give you a strange look...
I cant believe the new school year will start soon! Slow and steady I have been getting her some new clothes and even a new pair of sneakers :)
Other than that all is going I guess...just happy that we have no apointments for awhile and can just have summer break time... I wish I was at the beach so badly.... like ache for it ...
Hope everyone is well and hangin in there. If I can do it you can!!


Monday, July 20, 2015

The Scoop. And some Jamie Rambles...

Just Type in "Plastic Rain Sticks" into a Google Search and you can find some links to the exact one Madie has in her picture! They are about 10 bucks and WORTH every penny. :)

Anyhoo here I am. (rock you like a hurricane...lol er something)

A lot going on. I am just happy that this week we do not have to go to Hartford for any appointments. WHEW
Nothing scary just kinda routine stuff... EEG was good..they only see spikes when she is sleeping which to me makes sense cause she only has seizures when she is half asleep or sleeping..but not all the time! We kinda joked how we should just keep her awake all the time now. lol Dad can deal with THAT meltdown! LOL
Also met with GI guy I am slooowly moving forward with Gtube process but no appointments for surgery have been made. Kiddo is doing good but she has yet to gain any weight. That is to be continued....baby steps!!
Also met with an Orthorpedic doc..was thinking maybe some AFOs for her footsies would benefit her but she recommended some Velcro braces for her knees that always bend when she bears weight on her feet making her ankles bend backwards and not giving her stable support. these will make her sit more with her legs OUTward which I am more than sure she is going to HATE with a passion. My little frog sitter... I believe the report said "frog lateral" which kinda made me laugh.
She was SO high energy this lady...I was taken back by her. She spoke fast and had unruly grey streaked hair and those hiking shoes by Merrel on...she was something and was able to show us just how madie stands without even making madie "stand"...
We waited an hour in that small room for a 30 min appointment and an "OK get these knee things" diagnosis.
NEXT please!
We will go in August to get checked out for those or fitted or whatnot.
I dunno other than that not much really...get lost in my thought a lot. Have not been to the beach and miss it terribly. Dad lives near the beach now and can take madie on weekends which is good...she loves it! I dunno its a whole family dynamics thing. I really have no idea when I will be going there again.. Makes me cry.
Feeling very left out. I love them all so very much and don't want to be a burden...Im a tough cookie but when it comes to family they all mean so much to me. Therapist said I have abandonment issues...YA THINK?? ME? NAHhhh!! Lmbo. HOLD ME!!

Enough about depressing stuff.....
Its another hot one in my neck of the woods and for a long while I did not have an AC...unless I wanted one that cooled more than 2 square feet I was not going to be cool and I was going to spend a ton of money which well was going to the last rubber check...SO...I just grinned and beared it. And seriously was pretty use to it! Than one day I turned to FB and asked if anyone out there had an older used AC they were wanting to get rid of for a good price I and that I would snag it. I get a message from an old friend I went to school with in grade school and she asked me my address....I was pretty stoked thinking she has an old AC she is going to send me and for her to let me know the cost and the shipping etc and I could pay her! NOPE. out of the kindness of her heart and or some kind of angel watching over me....three days later a new AC arrives in the mail and a note saying she was thinking about us and to stay cool.
I cried. I couldn't thank her enough...WHO Does that?!
There are so many times when I feel like nothing is going to work out and that the world is just a lonely place..and when I least expect it something great happeneds.....I never feel deserving when I cannot give anything in return...how could I ever repay all the nice things that people have done for me? I cant go sending them all on vacations! I wish!
The world still gets lonely at times and I really have a wish list for life a mile long...lol Its very colorful actually! Love.... I am tough to handle sometimes and I am moody and I leave my clothes on the floor and I am a terrible housekeeper...lol But I am Jamie. OH this is not a dating website?? LOL If someone takes care of me I take care of them and the other way around. Takes two. And we learn from each other. ya know?!It gets exhausting putting in all the effort only to feel alone... Oh my achy breaky heart. (shout out to billy ray when he had a mullet!)
Sigh...who knows. bah.
Well enough of my rambles for today. Lawn guy is outside making noise and the ADD is kicking in... Gotta get myself moving I guess. Happy kiddo off to summer school wheelin her down the driveway laughing as we narrowly miss some kind of animal guts/intestines...gotta love all the feral cats!

Hugs from The Ville! Kiddie pool is on today by 1. NO skinny dipping! That's only on Thursdays.