Feeling better!

Hello all. So I just had a talk with the hh agency. I feel so much better. I had posted previously and irritated based on just a nurses comments. So now I do feel better. Also I am looking for a support program here locally for chronically ill children. I definitely need that extra support. As for the pedi.. Well today we got new orders and NO i did not know about them. I wish she would tell me these things before my home supply company does! That is not cool. She wants to change her formula back to alimentium. NO NO NO NO NO! She has done amazing on elecare. Less fussiness, less everything. Why mess with the potion if it is working?! I know she is over 12 months now and they would like to see them on a different formula. But come on.. she is doing good. I swear sometimes they just like to see if it is going to mess her up. I know they dont but that is how i feel!
Ms K is doing descent this week. Few breaks off of her pump bc of her tummy. Tonight we had about 50 cc left in there after 3.5 hrs of having a bottle. Yah.. not yummy! I could tell bc her tummy was distended then i asked her nurse what time she last ate she said about 430pm. So nurse took off the extra off of her tum tum and she was ready to head to bed. We had one instance where the kiddo's hr went down on sunday. But we really do have a wonderful night nurse. Lord bless her soul. We wish we could kidnap her so we could have her all of the shifts. ;) I like to call her Gramma D. Funny thing is when i first met her she was very rough and i was nervous for her tobe in my house. But after giving her a chance.. Now we would be lost without her. She has been our main constant through all this mess. Lord do give her an extra gem in her crown. Plus she puts up with my venting at night. :D.
So as for the diva.. we are waiting on going where ever we are going. As of right now it is looking like ohio or nyu. Me personally.. I kinda would like to go to new york. Never been.. So it would be a nice thing. We are trying to get a definitive answer on the diva's diagnosis. If indeed she does have t his. What are we supposed to expect. What is her prognosis. I would love to know. But only God knows truely what our prognosis is anyways. ;)
We are on this horrendous rollercoaster ride right now. I have to say thanks to those who are supporting us through this whole endevour. Somedays its about all i have.

I have started several posts

but have not been able to finish them. I am sorry. Life has been turned upside down over here. I feel like one of those snowglobes that kids turn upside down and swirl it all around. Yep that is us right now. I came home from kenadie's pedi visit a few weeks back and a nurse at our house... let's call her nurse S, made a few comments. Nurse S said I overheard a convo with your pedi on the phone and she said that they think you are making these things up. WTF?!?!?!?! Yeah eat shit. Well I confronted them about what was going on and of course both of them beat the bushes and dont want to tell me anything. Well a few more days goes by then we have serious matters on our hands.
These people dont understand what is going on. I am to the point now where i want to just dig a whole and take my kid with me and go enjoy our lives. I want to say f the pump, the pulse ox, the EVERYTHING. I can't do this anymore. I keep fighting a wall. Why can't they see this crap when she does it. Why can't i have nurses who report crap right?! Speaking of I am so sick of the home health now. Backstabbing baby wipes. (eh attempt at being nice)! They say one thing and then do another. I am just over it. DONE DONE DONE. How am i supposed to fight anymore for her?! When do you say enough is enough?!

where to start?!

Hello friends and family. I hope everyone is doing well. The ladybug is doing okay. We went to texas on October 20th and had her appt. She had a partial blockage in the tube . The tube was blocked due to a lovely nurse. (sense my sarcasim!). We almost had to stay. We can't do a texas trip without a bit of drama. lol. The GI knew what was going on and he pushed us out of his office to the main hospital quicker than you could say i. We ended up needed a brand new tube. The dye process was horrible but getting the new one was a peice of cake!
We celebrate her 1st birthday. That was emotional for me. It was hard reflecting on the 1st year of her life. I am so happy to have her here with us. But getting here has not been easy at all. We have a battle to face and we will keep marching on. She has a pedi appt tomorrow. Right now her stomach does not want to work at all. So it makes things a bit challenging. Then missy thinks that a low hr is good. Speaking of on her birthday i happen to run into a cardi that has worked on her case and he mentioned a pace maker when she turns 2 or so. Due to her hr being brady and tachy. more for the brady. ;) But it is not a done deal.
Today we had a physcial therapy appt and the therapist said her legs are getting worse. Especially the right one. She asked if she had a brain bleed and i said NO! One thing we did not have at birth! She said she needs to see ortho pretty quickly and get a handle on this. She wanted to know why she was not in hip braces when she was born. Hmm our pedi said she did not need them. But ortho never consulted. However i am with her pedi. We had to work on the heart first! So the missy will be fitted for her orthotics and i have no idea from there on. I hope to pull some strings and get in quicker than later. They tend to have a wait.

Today is the day!

Today is the day of the little miss birthday party. Theoretically she does not turn one till tuesday but we wanted to be able to invite all of our family and friends to come. I will be posting pics and giving more of an update. I am going to try and focus on the year of positives today. However, i had nightmares last night that did not help with the positive attitude. The little lady has been struggling with her temp lately. She loves to be in the low 96's and upper 95's. Not a pretty thing for her! lol. Leaves her relatively cranky. Well i just wanted to put a blurb on today and will update a long post about medical business, texas trip (p.s. i kinda think her gi doc is cute.. shhh dont tell anyone! lol), and the home health nurses.
Have a great day!

If looks could kill!!!

I would be having a dead hh. Today was a rough day. We got a new one that had not orientated with k. I guess she had gotten lost on her way here and was just bitchy to begin with. NOT good! So I tried to remain optomistic about her. But when she came in and snapped at A.. oh heck no. I get mad at dh when he snaps at her! lol. So needless to say I called the agency and said do NOT ever allow her in my home again! The on call girl did not call me back until 3hrs later. I was a bit miffed about that! Then second guessed me. She said I guess these are valid since you aren't complaining she is using your microwave or something. Sure i am bored and wanted to bug you. NOPE! Then she got quite understanding when i said i called the case manager on her cell. ;) lol.
Today has been an off day for her. Her G tube is blocked! ugh. So it looks like an early trip to the ER in texas on monday. We could live without the G port. But that is where she takes her meds when she refuses them by mouth. She has a J port also. So that saved us tonight so we did not have to go back. And if her hh nurses were flushing they would have discovered this. Eh oh well. Wish us luck! We leave on monday!

A weekly update!

Hello all! First I have to say thank you so much to the readers that read this blog. I can't say how much we love your support even for those that dont post! ;)
So life has been a bit chaotic as of late. Our godson was born on the 13th! He is so handsome! Of course I might be a bit biased. Genesis told me mom since you could not keep my brother in your belly I have a godbrother. Let's just say I bawled my eyes out. (btw i have not really told her about angel robert! kids they know!) Then I took G up to the hospital to see her aunt tonya and she got so upset bc she thought that aunt tonya was going to have to be there for a very long time just like kenadie and mommy had to be. Again I cried. I almost feel like I have ruined my child. ugh. Then tonight I had to take K to the hossy and she says bye mommy I will see you tomorrow. You will sleep at the hospital and I will sleep in your bed like I usually do when you are gone. At least she keeps my side of the bed warm! ;) lol. So you read that right I had to take k to the ER tonight. Which i was very nervous about doing bc of the H1N1 crap. WE might have had the flu but even the docs were like RUN out of here when they dc'd us! lol. K's intestines are moving slower now so we are having problems with her tube. Just part of her AD. Then she got spastic on us which made her home health (hh) very nervous. But she remained calm. Then we got home and her hr plunged down to 64. Good thing I dont really get excited anymore. Now her nurse did a bit. Just bc this is the first time for her to experience it. she did good. Whish we could keep her around more. :)
K has gained almost a lb since getting her new tube! So we are so excited about that. She is pulling up all the time now. Can't keep this girl sitting anymore.
I am having a hard time lately. It is hard to accept reality when you are so busy you dont allow yourself to. Then nights like tonight slap you in the face. :*( I don't get it. I dont understand. How does a worthless peice of poop get a child kill it with abuse and my baby has to endure this stuff. I know it could be worse and pleases dont remind me of that. I have had plenty of those reminders. When we checked in the ER the lady took one look at k and goes are you sure she has these issues. Nah we are just bored and had nothing else to do. lol. But when they seen her temp bottom out. The nurse quickly changed her tune. Btw the triage nurse. She needed a good drink or a good night with a man! She was so RUDE! The docs on the other hand knew us. So we were in and out very quickly. :) When momma cried the hh nurse was so sweet. She was like you are doing a great job with her. She's beautiful. Thanks but this is the hardest job God gave me. Well i am off to do some farming on my fb. lol. Night! Please email if you have any questions. I am an open book about her condition.

Holy SWINE (H1N1) Flu!

Yep that is right. We have H1N1 (piggy) flu going in our house. Tuesday Alexus starts running a fever and I asked the school that she goes to if they are having flu going around. The director says no no. Well it knocks me on my a** on wednesday night. My body hurt so bad. I could not move my joints. I was so congested that I wanted to punch something it was so frustrating. Well i went to urgent care and he says yep you are + for Flu A. SOB! ugh. Then k runs a 103 fever so I have to take her to the pedi. She is + and put on O2 due to low stat. Then I find out Alexus is + and Genesis is + too. Lord I am going to go nuts! K is kicking some piggy butt though. She is doing awesome! I have to attribute that to the tamiflu! I love it! Plus the moment I n otice them sick i run their butts to the doc and the doc said that was the key for the tamiflu.

So not much has gone on this week. She has gained 9 oz of weight with her new tube! We are so happy with our gj. It took me months of fighting for it and now that she has it she is doing marvelous with it. She has more energy. Having more bm's. Is doing more of her milestones. Her pedi is like Alisha you knew. Yes mam! I am happy that we are having progress. She is now trying to pull up on things and when she gets up on things she is taking side steps! My lord my baby is about to be walking! As she becomes more mobile we are having more autonomic issues with her temp and purpling issues. But we are learning to cope with those. We should have homehealth care started on tuesday. I pray. It has been a month in the works. We NEED the extra help as she gets really rigid at night and it is hard to calm her down and be able to get any rest at all. I will update as soon as i can. Gotta head to bed.