Okay. So i will type this update out. Plus.. A birthday project!

Okay. As i was saying. With the conflict that has been going on. It has severly congested the communication highways with our pedi. What am i supposed to do about it? Any advice beyond wanting to punch the nurse? I know it is cold, flu, piggy flu, and croup season.. but she is the one that decided to manage k's care. She told her GI that she wanted to do it all. Okay so i believe it is going to take some work. she is a DIVA here. lol.
J-tube news: So we got our j tube in last monday. Overall it was horrific. They did not sedate my child like they said they would if it took longer than 20mins. She has a malformation in her bowels that creates some very skinny passages. So the radiologist was having a really hard time. Frustrating! I ask multiple times and they finally called the doctor and her doc was on the wards so the one in clinic would not authorize for it. It was major bullshit! 1hr and 20 mins later they got it in. I was so furious! She is tolerating her J feeds so well. Little to no leaking out of her stoma. And you can tell the girl has packed on some weight. She most definitely has her momma's thighs!
So on the homehealth front. Well that is an act of congress. Anyone willing to sign my petition i would appreciate! lol. We FINALLY got our letter on friday! So now we have to wait for OHA to come out and verify if in fact kenadie lives here and she needs the help. Like i would be asking for any other reason.
We are getting ready for Kenadie's big birthday bash. If anyone wants any information please email me about it. hancock_alisha@hotmail.com. We have had a few people ask about sending her items. WE dont mind at all. If you will email me i will give you her mailing address. Handmade birthday cards are cool too. If you will put your state on it. We would love it that way we can show here just where she is being supported from and all of the states!

hello. just an update.

Hello all. Just a lovely update from us. I am typing during a disappointing ou game. They are losing right now. :( So anywho.

We are all living and trying to stay sane right now. Kenadie is being her usual diva self. Today she decided to have some purple legs while we were interviewing a homehealth nurse. So at least we got to see how she was going to do with it. lol.

We have clinic this Friday and it will be interesting. We have had quite the conflict with our doctors nurse lately. Messages not getting to where they need to go. (message was typed last night but i went to bed before completing)
starting a new post. just an ocd thing. lol

9 months post op and now we wait on big D again!

(i started this post the other day but the diva came calling!) Hello all. First i have to celebrate the fact that yesterday marked 9 months post op! I am so excited. The first year is the scariest from what I have been told then you slowly move out of the danger zone. But remember it is K so we kinda always stay there! lol.
So lately life has been nuts. K had pneumonia and we were trying to treat that. Then she lost all of her fluids a week ago friday. So we had to run to the ER for that. We were there until 445 and they made us be in an office 30mins away from us by 8am. It sucked. So we went there and they gave her a shot. Then I was at her aunt tonya's baby shower and her daddy called saying her tube fell out while she was sleeping and that i needed to come home. Well i came home and low and behold the whole thing include some granulomas were out saying hello to where i could not place it back in. So yeah that was another er trip.
Then we seen the pedi in office this past wednesday. All i can say is i am so frustrated right now. Her nurse drives me nuts and everything is being blamed on her AD. Then we are waiting on Dallas for her tube. Finally after me yelling at them 5 times this week we finally got the call that they got it in. So we are leaving for dallas tomorrow for the placement. I am ready but i am so scared. I am out of my element yet again. What if i fail at this or something. Ugh. When i get comfy with my daughter they go and change things.
I have a vent right quick.. If you think i am getting personal nursing care because i dont want to take care of my daughter you can go jump off the highest building there is. I am getting nursing care for her so i can be a mother to her and not a nurse all the time. I want to know what it is tobe a mom to my child. Not just a caretaker and advocate.
My heart is hurting right now bc i honestly can't tell you within the past 11 months where i have truely just been able to enjoy my baby. We have moments but that is about it. That is one thing i want to be able to do.

2 years yesterday! (Angel Robert post)

2 years yesterday I lost my angel son. First I did not know it was my son. Too early. He was only in mommy's belly for a short time then flew off to be with GG. That day was horrific if i might add. Details I am sure are in my blog somewhere. Part of me is happy for finding out thanks to a nimrod RE but then again.. I have quite a bit of sadness still. My heart longs to know what it is like to be a mother to a son. I love my daughters to pieces but I still feel like something is missing in my heart. I touch those blue clothes and my heart breaks. It really does suck bad. I have a godson coming next month and I should feel nothing but happiness but part of my heart breaks. He is supposed to have a buddy named Angel Robert. And not one that can be his guardian angel either. But he does. I am so excited for them.. but you know your heart still hurts some. Yesterday I wanted to go hide in a hole and just stay there. But I couldn't. I went to the fair and tried to be optomistic about the day. Just so many memories come rushing to my head when that certain day of the year comes. That and may 4th.

Angel,
Mom loves you emmensely.. I thank you for all the work that you do when you watch over your sisters. Lord knows Kenadie needs double time. I miss you tons. I would have loved to be watching you grow.. See when your first steps would have been. Seeing just how much fun you would have had with your daddy. I bet he would have taught you xbox before you could have said momma! My heart hurts tons baby. I think of you often and I know you are having a good time. I finally talked to your papa. He's a great man. He is kind of hurt knowing he could have had a grandson. We were in the hosptial with your sister and some social worker was bugging me and I broke down. And papa was there to hear it. It was good though cause now papa talks to me about it often and acknowleges you. You were/are my baby..I may not have been able to give birth to you. But my love grew for you the day I seen a + on my pregnancy test. I remember when I told daddy i was pregnant with you. I was sick and went and got a pregnancy test at 430am. Took it and it came back +. We never in a million years thought we could get pregnant on our own. There it was. I ran to your dad who was still asleep and said "OMFG" i am pregnant. He thought I was pranking him. Then he got so excited. Then I had to tell nana and aunt tonya. Your nana was with me when I found out you passed away. :( Dr. Houk was a sweet dr. He said our baby is now in heaven and watching over us. I miss you tons sweetpea. Keep watching out for your sister. Momma loves you to peices and has her candle lit for you.
Love,
Your momma who misses you so much!

Weekly report here. Diva is sick!

Hello all. This is coming from a very sleep deprived mother today. So it has been 8 days since my last post. Life has been CRAZY. So after our first night inpt the diva decided she would crash with some meds that she was given the next day. I got into it with a doc bc all the sudden her AD is to blame for everything. ERH! Then the pee on of a resident really he was only a p1 i think said I AM NOT LETTING HER HAVE IT ANYMORE ON MY WATCH! Ha! I bet he got his ass chewed. But we are appreciative. Then they sent her home right after it and I was ticked. Hello people you should observe her! So her pedi did not call me back for 5 days. She finally did and she got an ear full and she was mad that some communication was not getting to her. I took her in and she is running a fever. ugh. She of course likes to blame the AD on the phone but once we got there she was like no she is SICK! One more check mark for mom! So she listens and hears a sound above the heart. Not a murmur or anything lik ethat just a scratchy sound of sorts. So we had a chest xray and lungs looked funky and heart look a bit big. She thinks the heart is bc k was pissed and the lungs well she thinks k has aspiration pnuemonia. Tell me how that happens when her fundo is "in tact?!" *Shakes head* Anywho.. K is back on continous feeds as of today and we see her GI tomorrow. She is very sick today. Barky cough, fever, losing all her fluids, and all that beautiful stuff. Mom has had maybe 50 mins of sleep or so. I smell like digested Elecare and have given up on changing shirts after the 5th tube spray. Anyone want to come volunteer to help with laundry?! Man it is stacking up today.
I will try and update tonight when we arrive in dallas. We are avoiding the hospital at all costs well in dallas then her pedi said for me to call her tomorrow night and give an update and she may admit at our luxiourous hotel called baptist!

Deep thoughts and Night one in the hospital

Hello all. I am forewarning there is alot of deep thoughts and emotions going into tonights post. ;)

Very very first things. We met a lil family in the waiting room their 7 mo son named Walker was just diagnosed with Cancer in the Kidneys and a few spots on the lungs. He was having one of his kidneys removed today. Please pray for this family and wish that mom tons of lovings. She was one of the sweetest ladies I have met in person. She was just so open to hear our trials and they just got their diagnosis 4 days ago.. So it is very very fresh. She said even though K does not have cancer she has her own battle and she gives me and my family such strength! Blessings to walkers family!

So first things first. We got down to dallas last night a lil before 8pm like true diva fashion she was being a diva. Cranky, then broke out in a freaking rash, and sweating. UGh. So I called the GI on and they said just her AD that all is fine. Whew! So it was a very long night. Only about 2.5 hours of sleep and that was NOT consecutive either. Then we get up and moving at 545am and get to hossy by 630am. We were not rolled back to the OR till 11am! My poor kid had to suffer. Thank god her tummy empties slowly! lol. They get her back and they have a minor complication due to the ms emptying rates and then call us and say ready to roll. Papa and I get there and she is not doing so well. She is in alot of pain. She was very horse and rattly in the chest. She has never been this way post op. So I am a bit nervous about it. Today was horrendous. She just cried so hard till I rattled some cages and got her some meds. Then of course she threw up on me which sucked and peed on me. Gotta love being a mom! ;) It is just so hard to watch her struggle and know that she is in pain. If i could I would take it for her. Just so I would know my daughter would catch a break. So tomorrow we will do a scan with the probes and we will have some results on friday. Answers are always appreciated. :)
Oh and for those keeping up with saga on the reach team. We happen to see the gen ped doc that seen k in the hossy and made the referral today while walking to SB. He said oh ms h.. Where is k and i said she is on # floor doing her tummy biz and he was like oh.. really. I was like yeah.. Not here for attention today just not my cup of tea today. He said just for the record I did not want a cps involvement. Eh whatever dude. My daughter is in the or right now. Then he went on how unique k is and how rare you see these symptoms.
So tonight I am battling some feelings of anger,resentment, and just plain sad. I dont get some things. I dont get how this cracked out lady gets to have a healthy baby and abandon it at some hotel(seen it on the news). While this mom of walker just begs for God to let her keep her only child on the freaking earth! I dont get why the girl next door to us is only 4yrs and will need basically a body full of new organs to live. It seems so jacked up to me. These children are so freaking innocent. Where did they do something wrong to deserve this. Most of the parents I have met have been so sweet and compassionate. Why?! If this is to teach me a lesson. Please I beg for mercy I am done!
Also I have the anny of my Angel loss coming. September 20th. It hurts quite a bit still. I catch myself thinking would he have been healthy, would he have had any of this, and would he have mastered it like the diva. lol. I just plain hurt still. I see the lil boys that are about to be 2 and my heart sinks. Holding a little boy still stings so much.
My god son is coming next month... and I am so looking forward to it. I asked my angel son to please keep this baby safe and sound in his mommy's tummy and he has been. I think he will help me heal in some aspects.
well i am off tobed tonight. any questions please shoot an email. i am pretty wiped out.

How to summarize K's past few weeks..

Hello all. First let me say my apologies for not updating like a good lil momma should. I am mark my words going to do better. Since we have a diagnosis I am going to try and update our blog at least once a week. I will be writing about our feeling, what's been going on, the life with an AD kiddo, and just life in general.
So Kenadie was to have a heart appt on August 24th for her 8 month post op appt. Well we were having some problems with kenadie on the friday before hr and pulse ox. So i just watched her more. Saturday was horrid. 10 alarms with a hr going down in the 60's. Then i got nervous and told dh that we need to go to texas early sunday. I was not feeling comfortable with this. We got their sunday and she had this rash all over her body. She has been in anaphelatic shock before so nope mom does not play with rashes. So I rush her to Dallas ER and her hr is nuts. We get their and they swear it is not an allergic reaction. (rolls eyes whatever) But then got concerned by her hr dipping. So that bought us an overnight stay with a whacko. Well the whacko doc did not know what deteriorated motility means (slowed down) of the intestine. So she brady's and becomes unresponsive at 49bpm. They call a met team and rush her up to the CCICU. Her core temp was 94.1F so yes. We were having some issues. Then 1 day passes and the lovely does not have one spell. Temps were so so. So we got to go down to the regular floor. The moment we get down there BAM she goes back down to 94.1 and hr of 49bpm. SHIT! So they rush around the P1 resident almost pisses her pants she has only been on the job less than 2 months. Then she stays brady 2 hours later. Why we didn't know. Her temp was 94F then too. So missy was hypothermic and trust me our room was no ice cube. They had doc order to have it 80+F in there. It was a sauna! lol. Then the stupid stupid people call dhs on us because we were not at a local hospital. Lord that is a long one. But needless to say after calling my attny and the hospital administrator and having my fil gripe people out. It was solved. So no we aren't looking for attention, yes i want my baby, no i am not an alcholic, yes i wanted the pregnancy, and yes i am on an antidepressant and yes i am a damn good mom on it! LAter we found out their reasoning was so discremanatory that it was unbelieveable. Pedi has it on a recording for me. They claim they were worried bc i am on a antidepressant for postpartum depression. WEll hell yes,.. Look at the hell i have been through. NExt! So Finally we get a diagnosis. They claim the missy has an autonomic disorder. And she lines right up with it too. So now we will be in and out of hossy again trying to get things tinkered with. It does not get better it stays the same or gets worse. We are testing for a metabolic do too bc they can have similar stuff but her pedi is almost 100% that we have an AD. which it blows but hey we do what we have to do.
Right before we came home they wanted to put k in a children's nursing home essentially. Umm NOPE! Not my kiddo! I unkindly let them know how i felt about that. She is my child and hell no! It has been a rollercoaster from hell lately. We are headed back to dallas tomorrow for our stomach stuff. PRay that SW stays out of my room cause if not.. Please bail me out of jail! lol. I will try and keep my blog updated. Thanks so much for the overwhelming support! Please email us at hancock_alisha@hotmail.com or campaignkenadie@hotmail.com we would love to hear from ya!