Saturday, October 24, 2015

Pumpkins. New Rides and Rambles

((palms rubbing eyes))

Winter is coming..this fall has been beautiful visually but has not been gradual... Its cold. Its just too dang cold.
Hello. lol
Put in an order for Madies new ride...Im so excited for this awesome new STURDY ride!The hardware is going to be this awesome candy pink purple color with a black seat and pink accents...OH yes...we are going gurly. She fits great into it and we made a few changes that they will customize for her..(we saw a sample)I also like how it will have breaks in the handle that will help when its winter and slippery and mom needs to get catch her footing. lol Has a lot of cool little features. I like it a lot.
Also in medical news.. seizures are seizures have not changed really...same frequency and some mornings the drop seizures just are relentless. But she is happy and doing well for the most part. Also going in on Nov 3 to get Madies peg tube replaced with the mickey button. FINALLY. so tired of that dang thing getting pulled... Im a little nervous that it has to be such a putting her to sleep and booking an O.R.. thought it was going to be a simple thing..Well it is simple but they have to do it in an O.R..five minutes tops and no pain meds will be needed like the dreaded morphine. WHEW.
Also our Make a wish vacation is chugging along...Its been proven IMPOSSIBLE to get dad to come with me to get Madies passport ordered... I am exhausted from asking him..but it makes me nervous that this trip wont happen! AND OH IT WILL> I may just go drive to his place one day and be like SURPIRSIE its passport day!! Ugh.To Be continued....

((scratching head))
Been feeling ok in general..depressed sometimes...but keep on keepin on. I always miss Madie so much on weekends and wish I had her to do things with on weekends but if Dad is not in the picture I just need the break..and he adores her. she adores him! I ache a lot for...that feeling in my heart to go away..for my heart to feel full. If that makes any sense.. A piece is missing. And some weirdo from a date website or a bar is not going to fill that...
Ok really done talking about that.
A picture from our trip to the pumpkin patch. Every year I am determined to support the local farm of course but to mostly get pictures of Madie in the patch every year! I even got her on the hayride and left her chair at the farm stand and carried her thru the patch to find our pumpkin. These kind of things I miss so much doing as a family. The things that I treasured the most. Trips with the three of us. Major Holidays are the WORSE.
Id also like to thank the people on the hayride for watching me struggle to get back on the ride carrying a wiggly immobile child and a large pumpkin...and not grab the pumpkin for me..sigh..
Heres a pic from our trip to the lake to see cousins :) last of the warm gorgeous days! And a picture from a walk we took by the river..just cause its purdy.

I think my hair is seriously getting really. lol. haven't had my hair done in a long long time..:( Not much of a reason to blow 120 bucks..
Been getting a lot of help in I even have a food pantry available to me if I need it..and I tell ya when I have no money for groceries and checks are bouncing all over the place and I have negative 66 bucks in the bank...the Pantry is a godsent!! I have also been doing volunteer work at this awesome place that does food and clothing..I get such a huge joy seeing the ladies come in and snag a gap or an adorable baby outfit for the baby that is still in their belly :)! such awesome places exist if you need them! they give madie diapers every month and have also told me about the diaper bank which I have yet to check out! Takes such a load off and helps me rest easy. I also kinda secretly enjoy my volunteer sometimes they give me fresh produce from the farm that has JUST been picked! :)!!
I have a lot of blessings in my life and a lot of things to look forward too...mainly VACATION!! And some days its very hard to keep my head up and stay positive.. I miss a lot of things for sure. I wish for a lot of things for sure..not material things. (although a new laptop would be nice and a million dollars) I have a lot of love in my life..its those (pardon my French)fucking missing pieces that I ache for so very much dragging me down..
I will keep everyone updated on how things go with madies new ride and her tubie change too. keep us in your thought. donations are welcome. (IM KIDDING!)


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 I would do anything for 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 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 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 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 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!!