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!!

Me.

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.

Me.

Tuesday, June 23, 2015

Beach and Rambles


Here we are.
Oh how I love the beach. Its the most calming place.. I wish I lived at the beach so much! Cant really rent near the beach...SOmeday I hope to live near the beach I just love it. But who knows! Each time I go there I just soak it in....
A lot of appointments coming up for madie..each week we have one. Next week is GI and week after that is EEG and week after that is Ortho for her AFOs..in meantime summer school will be in full swing but till then she still has another week and a half. Not doing much this week feeling a little cabin fever and its been boiling hot outside not that I am complaining cause the winter was horrendous! Just a couple dog days and it will get more comfortable soon :)
The school year is out and second grade is done. One more year at her elementary school and its off to middle school...pretty freaky. Cant and wont imagine madie without her Para.. I have been itching to relocate sometimes but Ill see where life take me. I dunno...
All has been going I guess.. Had to have Dads car towed from my place yesterday the poor car is on its last leg... But miraculously STILL up and running just barely after the mechanic fixed the starter! Unbelievable! I wanted to tell him that if we were married a new car would be more feasible...LOL but nah... Ill keep my smart ass quiet. I hope he finds something...wonder if he would like a fine lookin dented 2007 civic? Just kidding... Yeah I thought the old car would certainly be the end...I stayed positive and kept hope! Nine lives that car has...nine lives!
The AAA tow guy has no teeth... LOL
ANyhooooooo... not much to ramble about today just feeling antsy as all hell. None of my neighbors had any mail in their mailboxes and I have one bill....LUCKY Me.
Ready for the weekend for sure.

Me.

Wednesday, June 3, 2015

SHoo Wee One Month!
Well here I am hangin in there!
Still no laptop but I did acquire a monitor that I can hook up to my broken screen laptop and EUREKA I am online with a keyboard. HA
In Madie magoober news she is getting big for sure and if your not a FB friend of mine I am sharing some pictures :) BUT first in news....
Adding TWO new docs into the mix...A G.I doctor and an Orthopedic Guy ;)GI is very important and hoping that when we go we will see SOME kind of weight gain...
I have to go into my shpeal....bear with me.. Part of me is anxious to GET her the G-Tube button and part of me is hesitant... I believe that the button will alleviate the stress of worrying that she is not getting enough nutrients... I will literally liquefy fruits and veggie and feed them to her...AND yes she STILL will drink her sippy which she is very good at! And loves her water and her occasional apple juice treat...Eating has been SUCH an issue with her...I am tired of her being on supplements...I want real food... And don't forget the terrible constipation! :( THEN there is the what ifs...what if her tummy totally rejects it and she vomits or she gets sick or she ends up with the tube forever? I look at her and of course to ME and Dad she is PERFECT and is certainly Dads physique lol Tall and skinny! But oh my baby girl.... I just look forward to meeting with the GI doc and all three of us talking about it and learning more about it and HOPEFULLY making the right choice. Been waiting awhile for this appointment! We both love Madie to the moon and back and just want to make the right choice... Baby girl needs nutrition! In the land of supplements she is SUPPOSED To have SIX boost essentials EVERY day....lucky on good days to get 4....so. yep. :(

THEN there is the Orthopedic.... Well this in not so scary nor is it a hard choice...we are going to get her fitted for AFO's on her feet...It will help give her extra support when she does her therapies...she just had no muscle tone and strength... when she bears weight on her feet her the back of her ankles bend out behind her.. So....hopefully in next few months we will have them.!

And in Mom News...well one day at a time! All is going. No earth shattering news. I think I have about a dozen tomatoes on my tomato plant! lol
Oh and how can I deprive you all any longer of some precious madie pictures!!
Be well everyone Ill keep you posted!!
Me