we have a date for ohio!

Hello all.. Please forgive my abscence. Trust me I have been so busy. Hmm where to start.. The diva showed her true colors a couple weeks ago. With a lovely hr of 42bpm while she was awke. So that bought her a trip to the cardiologist. He put an ekg monitor on her and it will stay for 30 days. What a pain I might add. But it will determine if it is all autonomic or if she has av disease. She also went to the ent doc and he said he wants to scope her throat to make sure her vocal cords are fine bc of the swallowing issues she is having. That is scheduled for january 16. Then we finally got a date for Ohio. Febuary 16-18. But that is subject to change. I want to be able to go when my fil can go. He is my rock support when we are out traveling. So we are going to see if they have another date when he is off work.
Right now.. she is having some issues. I think it is just too much for her. All the family visits, the shopping, just a bit of everything. I do forget that she gets hyperstimulated. But it is hard to just leave her at home with the nurse or a parent. And right now. Lord dont get me on our nursing. That could be a LONG ordeal! lol. I think with her going with me and stuff it keeps some normalcy I guess. But it is going to have to change. She is just not dealing with it. Not sleeping well. Crying alot. ugh.
Personally, it has been a bit tough lately. I am having my surgery on monday and wondering how the hell I am going to juggle it all. I am sure in the end. Everyone will be breathing and living. But I just dont know. Then I get the kind reminders everyday that my child is not "a well child". Wether it is her temp, her issues with hyperstim, purpling which i might add is a little funny when you are out and a stranger freaks lol, just those little things. I dont feel like I connect much anymore with those who I used to be able to connect with. I get easily irritated with people on small things now esp when it comes to their children. Like hello dont treat child x like that. You have a healthy happy child. Cherish that.. enjoy that! And sometimes.. I have this overwhelming feeling to want to go slap person x.. but that might not look good on me when i become a nurse. ;)

Angel ramblings

So this is a rambling post. I will wait to get back from the pedi's to discuss the diva. Lately my emotions are all over the place. The holidays being here are hard. Its hard knowing my son should be 1.5yro and he's not here. I seen some really cute boy toddler clothes and just longed to be able to buy them for my son. I see my relatives son and just have that tug. I sat and typed a text message to my godson's mom about how much he means to me and just cried.

I love the 3 children I have and I am so thankful for them. I thank God everyday that he let me have the 3 I have. But I do miss the one's I lost. The holiday season brings alot out in range of emotions. This would have been the fun thanksgiving and christmas. I see the joy that my godson's mom and dad have with their son and miss the fact that my husband does not get to experience that. We only get a paper that says our "embryo" was a male. I am not going to say I am jealous or not jealous. One thing that gets to me even though I know people are joking around is when they say oh you can only have girls huh?! We had discussed with someone about adopting through dhs in about 1.5 to 2yrs and they said oh you dont want to have any more girls huh. No you nip whit. I can't have anymore children.. It can KILL me. I think my children need a mother. :D
(was meant to be posted but forgot to push the post button! lol)

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.

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!

PLEASE PRAY FOR KENADIE

Hey all. We are in need of some prayers. Kenadie is in the ICU in dallas texas. She kept having brady spells. Please pray for an answer!

Can we just get the surgery done!?!

Hello.. this could be a lengthy post. I warned you ahead of time! lol

Hello all! We are all alive. It has been one major rollercoaster. So my last post i said that ms k could not have her scan done bc her tummy was so freaking slow. We went to it on that tuesday and got word that her gut is slow. Well what more did they expect. Her stomach is 92mls big. (really for those not in the med field that is a bit over 3oz) so not enough to sustain life really for her. So we are moving to the j tube. One of these days. When.. I have no idea. Then the missy wanted to throw in a special side of hers. Her d tube and jtube are supposed to be lovers essentially.. well a piece of intestine connects them. .So the "threesome" as her gi calls it is not so awesome as it slows things down tremendously as she grows. Can they fix it you ask? No the risk outweight the benefits right now. So we will continue with our plan of the tube and then press on with the 92mls during the day. Yes she will have her little pump going. But hey that is fine. I had a great emoitional break down as my goal for her going down there was to come home tube free. Instead we learned the missy has to have it for long term outlook now. But would i expect anything different from the diva. Nah. We also have deemed her Jill's diva. If you knew jill and her heart bling.. you would get it! LOL. Love ya jill! She is my diva when she is being a good girl medically!
So we are home now. We came home about 1.5 ago. I got into a disagreement with k's caseworker who wanted to put her on a med that possibly could cause respitory distress. Oh she says there is a minute slight chance. OKay folks i know i dont have to tell you how minute chance she had of going into chf was. So i kindly well not so kindly told her umm NO! So she says well since y ou dont want to try this then you can go home thursday. Oh yes mam! I am going! Plus they said we need her bed.. wth! eh whatever! Same folks that said they would call cps (oklahoma's dhs) on me if i would not allow a nj down her. Btw i won that battle and told them exactly what they could do with putting my name and cps in the same sentence. If every abused child was loved as much as kenadie they would not have a fing job.
Right now we could use some prayers. We are really struggling right now. My work check did not come out to be like it was supposed to. So if you know of any national resources or local then please send them our way. We are also debating on applying for the homemake over show. Our foundation is going to crap. And obviously no way to fix it at all!
oh and please keep the diva in your thoughts.. (as if i had to ask that) she has had cold clammy sweats 3 nights in a row. I am calling her pedi monday!

a mini update

Hello all. My life has offcially went crazy! So right now the diva is taking a much needed nap. Her papa came down for a few days and it was well needed. Since my last post we haven't gotten much done. She had a swallow study that was crap! Pooling by her vocal cords and something else. Oh and her jaw is weak.. ya think?! Then we went for scan on her stomache yesterday but could not do it because she had not digested the barium from the day before. So we have to come in on tuesday.

please forgive the short post.. i fell asleep typing in.

A diva update

Hello all. The diva is snuggle in her bed fast asleep right now. She's had a rough go the past couple days. Yesterday she decided vomitting was her cup of tea. Mind you she has had the surgery where that is NOT supposed to happen. So yes it freaked me out. It was while she was sleep and i heard her gasp and then bam.. ACK! I called the nurse who was no where to be fing found! ugh. I got her supervisor and got things taken care of. Then radiology calls and says can't do your scan tomorrow due to the camera broke. Well sh*t! Then she would not eat and then had a blow out. It was NOT our day at all. So today i took her to the GI nurse after she would not eat her breakfast. She says it anatomical that is what's wrong with her stoma.. which we figured out that. Did not take a rocket scientist. Then the hossy called us and says hey can you come in now. So we did. (We are at baylor her testing is at childrens of dallas) We get there and they tell us they are behind by 45 MINS! ACK! I had nothing to eat by then it was 230pm.. so i ran downstairs to get something to eat. Brought her back. She burped and choked. IT was nice. not. Then we waited and waited. Come 320pm i was getting ansy. So finally they let k eat at 335pm and starts her test. They were really nice and kept k entertained. The tech blew bubbles and played with her. After the test was over she asked me if i wanted a peak.. Sure! It did not look good. :( 37.3% when we should have 55-60% and i have been telling this for MONTHS! Iwanted to shout i told you fing so! We will speak to the doctor tomorrow or in the near future and then go from there. The nurse told me the likely hood that k will have her tube long term. And i am more at peace with it. It is who she is right now and as long as i have my child i dont care! If people have a problem with it. .Shut your damn eyes! :)
Today i got my feathers rowled up. I was told to not be upset by any of it and this is because i SINNED! Lord Jesus please tell me i misinterpreted her comment bc if not... i know what she is eating for lunch next time. A bible sandwhich. I swear we are idiot magnets.
As of right now.. I think i need to withdraw myself from the other parents at the place.. for a day or so.. or just walk away from the idiots. I thought i was going to go ape nuts. But i surprisingly kept my mouth shut. lol. Another complaint i have.. is why the heck can the nurses NOT KNOCK? I mean seriously this is like my home. Not that i am doing anything that i should not. But man when you are changing jammies.. or whatever. please. and no we dont have a bathroom in our room. We have a communal bathroom. Any suggestions this momma will take them.

hello an update and possible surgery

Hello all. So here goes an update folks.. Prepare for the long ones now! lol. Ms K has been quite the diva lately. Since we have been here she has managed to learn how to reflux and asperate again. Destat once. And not want to take her food. She lost 7oz in a weeks time. So they bumped her cals back up on friday to 27 and we have not been there is a while. Since then.. she has gained 5 oz back!
Friday we went to the GI docs across town.. and man dallas traffic is no fun at all! The doc he is a bit unusal. He seen kenadie and was like this is not a simple task like he was told on the phone by case management. He also said he wants to make sure the heart is okay.. cause that can cause reflux. And lord knows we do not put heart and kenadie in the same damn sentence! lol So we have to do 3 studies on her tummy and an echo. Then he is going to do surgery on her stomach. Some of those are thursday at 9am. Then we see the gastrostomy nurse that afternoon at 1pm. She has to look k's g tube over and we are going to decide what to do with it until they relocate it.
We have been told we may be here for 3 to 4 more weeks. It is very hard being away from my family. They have come down on the weekends but still it is hard. I do not have a job anymore now. So I keep praying that all will work out some how some way but right now my daughter needs me and my attention. For those wondering from my house to baylor it is about 4hrs without heavy traffic.
For those who have asked how you can help.. i have to provide breakfast and lunch for myself here. So gc's. Please know this is only for those who ask me. I am not asking. And i love starbucks! It keeps me sane on those rough days.
If you have any questions on kenadie or anything.. please ask away! I will be glad to answer them!
btw i did not realize this was posted on an edited post.. i posted it yesterday.. 7/20/09

hello all. we are still alive and k is in texas at baylor hossy.

Hello everyone.. Please take my apologies.. I have been so freaking busy with Kenadie, my job, my girls, and my husband. So much goes on.. I dont know what to write sometimes.. I feel like when we have a good day/moment then it goes down hill. ugh..
So anyways. We did 1 week in the hospital with the diva.. Got us nowhere really. Then we got our referral down to baylor and that was a struggle in a half. So here we are. We are working on teh tummy. We found out the misses is protein intolerant and has an immature stomache. So we are looking at yet another g tube surgery. She starts therapy tomorrow.. So tomorrow i will elaborate more.

In paitent stay is coming our way on monday!

So Monday morning we will check in the hossy.. Her pedi is needing to run some scans on her belly find out the "real" story. Since we found out the EGD was not done right. Stupid bas*ards! So as we know right now she will be in house for 1wk or so. It is going to be here in oklahoma at the hospital i prefer i guess. I dont really like the pedi care in oklahoma but hey i will take b over ou anyday! So I am really not looking forward to this. Her pedi says she needs to "document" her gagging when fed babyfood and needs to "document" her formula coming out of her stomach. I swear people I am not a mom to make up the stuff about my kid. She says this is what we have to do to get her down to baylor or wisconsin. So whatever. I am just not looking forward to this. We are detoxing her system right now. Not allowed to have ANY gi meds. So this is going to be one hell of a week. Then we will check in and the nurses will feed kenadie. I am just praying they see what we see at home 90% of the time. She better not decide to have her "good" days while she is there. They are also going to do a scan on her tummy to see exactly how big it is and if it is going to grow on its own. If it is delayed then they are going to put the other tube in. :( So here goes nothing! Pray for my sanity because i am going to need it!

The diva's update

Hello all.. So life here has been very interesting. The diva decided to have a severe bluing spell on me on Tuesday. We took the girls swimming and as i was getting her ready.. totally blue and purple. She was alert but lathargic. It scared me just a touch. But we always have the rescue O2 with us in the van. So 4liters of flow by and bam she was good. Scared the crap out of the people at the pool but eh whatever. Then folks were getting a good chat about her tube. Seriously people you have seen her button.. She is not a display or anything to sit there and talk about. I almost threw this snobby lady in the pool. She was like eh what is that?! You should cover that up! Umm lady.. you need to cover your body up.. no one like that should be in a two piece. My poor hb was like come on alisha.. dont mind them. She is a baby really dont point and laugh.
So on to other news.. We are going to Wisconsin. We dont have our date yet but I got our packet and filling it out. We are just waiting on the nurse manager to call us and let us know. I am nervous as this is our last straw before the gj tube. We are headed down to dallas on july 24th also. We will be seeing our cardi and the gi down there also.
I personally need some prayers. I am confused as what to do with my professional life. I am trying to decide if i should continue to work. It soon may not be a choice as my boss has let me know that if i can't be there like i should then i will be let go. It is hard to deal with. But then again.. how do we afford this or that. kwim.

An update our rollercoaster!

hello all. sorry i have been the world's worst blogger. but here coming up soon you are going to be like does she ever shut up! lol. if we get put in wisconsin.. then my computer and school work will consume me! :)

So.. what to say first. K is stable. Weight not gaining but maintaining. We need her to gain just a smidge more so we can lose some of it when we do our feeding therapy session. We have not been offically accepted anywhere yet. Everyone keeps saying oh she is too young. But we keep facing roadblocks. She is having a ton of problems with her motility now. (not pooping) Then her fluid just pours out of her stomach. So now the pedi is talking about putting a GJ tube in (more invasive). I really dont want to go this route. I want her to be able to stay with the G if we have to have one at all. Her pedi did tell us to start coming to the realization that she may have to have one for the rest of her life. You know right now.. if that is all she has to deal with. Bring it on! I know it is not ideal but you know what none of this situation is ideal. And if a man can not love her with her tube.. then crap on them. She is a very beautiful baby. :)

We are also trying to get in to see peds cardi. All her cardi's keep going on vacay and stuff. So that makes it a lil difficult.

I just got a call from wisconsin while i was typing this. They are sending our info packet in the mail so we can fill it out and get our date to come! Crossing my fingers!

An update, rambling,and emotional business.

Hello all. So here is the update. I took K to the pedi on friday and you know it is never good when she comes out and says I am putting you as the last appt today.. I need the time to talk with you. F***! So we go weigh.. 16.10lbs..25.5 inches.. and can't remember head stuff. She comes in and does her assessment. Then says that she is a bit concerned as k is going backwards on some developmental stuff instead of forwards. Eh whatever. Then says.. well dr t called me. Says he is concerned that K's stomach has not grown in mths. UMM COME AGAIN?! Same man that came out of the OR and told me all went well and he does not understand why she is having motility problems and does not understand why we are seeing flashes of blood? F him and his crap. Btw my pedi is pissed bc he passed the damn buck on her AGAIN! A little history.. when she had her major surgery.. he went on vacation that next day and left her to do all the ICU work and everything. Boy she was fired up when she found out I did not know! She casually states yeah he sent me a letter stating his concern about her stomach not growing. Then called her after the fax. Beautiful. (not!) So both her and I kind of stared at each other in disbelief. Then we discussed our options. GI here in oklahoma sucks monkey balls so NO that is not an option as they have already consulted on her. Then I mentioned the feeding programs in Texas and she says Alisha you do the research and I will back you up. Okay so I am/did. I have found many programs. But I want to know they have a good heart dept too just incase we are in need of caridac help while we are there. Now most of these programs are 6-8wks long. And I will practically have to move to another state for acouple months to go and be with her. I dont know what I am going to do. I am going to bounce some ideas off my pedi.. But my daughter comes first and foremost. I have emailed NC, Florida, and Cali thus far. I am also going to email Phili and Utah.
Now the emotional part. Right now I feel like I am letting her down. I am supposed to provide the best and stuff and right now I just feel like I am not cutting it. I dont know how i am going to choose between my job and her care. I am sure it will all work out but right now I just dont know. Her SSI is supposed to go through but when I have no idea it is the goverment. So you never know how that is going to go.
I am supposed to be taking her to the test tomorrow and to the pedi but I know if i call my boss then I am screwed. Why why why?!?????!!!!

Ms. K rocked the OR and an update on her cousin!

K before her surgery in waiting room. :)

Hello all. So ms K rocked the OR yesterday. She was such a good girl. She is in a bit of pain but we are staying on top of it. There were a few bumpy spots but that is due to the lovely institution that we were at. (LOTS of sarcasm inserted there). There was an agreement that K would be in observation for 24hrs after her procedure. But the charge nurse in step down told them she thought it was not necc but that is the only reason why my pedi agreed for this one doc to do it bc that is what he agreed to. Then the anth doc. Lord please bless her with more understanding for patients. I tried telling her k's symptoms and what not on the heart related side and she wanted to hear not a word. She just told my husband that "she LOOKS very healthy". If you recall from my last blog post or so.. I was going to punch someone that said that. BUT since we were stuck with her I figured I should not hit her. lol. I called the pedi and let her deal with it and she was FURIOUS that they sent us home. So ms K has been on her pulse ox for 24hrs and has only had one destat. We have rescue o2 at home so that is not an issue. :) Today she is back to her gummy grinning self. btw she has 2 TEETH NOW! My earliest teether.

Alexus had to go to the hossy last night also. Lots of wheezing and stuff and 5hrs of waiting finally got seen and they do two things and out the door we went. They have diagnosed her as having childrens asthma. We kind of already knew it but they can not give the diag until they are 2yros. Just sucks bc yet again I feel like I did something wrong. But whatever. Anywho.

Then K's cousin has ALS Leukemia. 90% cure rate for his age. He is on his second dose of chemo. And is holding up pretty good right now. Parents aren't but that is to be expected.

The diva being the diva and K's cousin needs some prayers fast.

Good morning everyone. Today is another day on this earth! So our weekend has been rocky. Diva keeps wanting to sleep after her bottles. Not like her normally. Then on saturday the diva decided grey feet were going to be good. (a note for those that dont know.. grey is NEVER a good skin color) So on went the pulse ox. Low it was a swift breath of O2 and she was good to go. Oh and a bit of lasix to help us along. Her granuloma (sore) is not any better. In fact her tummy is warm to touch so she is going to pedi this am to check and see if it is infection or what.

Then yesterday K's cousin Picklepuss (7yro little boy named Aaron on my dad's side of the family) was diagnosed with Leukemia. What kind we dont know right now. They are doing a bone marrow biopsy this morning to determine that. He went to the hossy very early sat am bc of a fever and not being responsive. They did bw and it came back + for leukemia. He is in fair condition in the Icu right now. My family is just in shock. We went and spent easter with him. He loved all over my mom and kenadie. He is a very onery and vibrant 7yro little boy with blonde hair and all. His mom is obviously in devastated. She went from thinking oh he has a virus to omg my child has cancer. I can not relate a bit to her but what i can relate is on the icu game. Btdt and I know the feeling of praying that your child lives hour to hour. Those machines can either drive you nuts or you can make a song out of the beeps of them. Yes if you are wondering I did. What's a mom to do when she is in the ICU for 23 hrs a day. LOL.
So yesterday after I recieved the news. I just sat and bawled in my van. I was hearing them talk about the ICU and it just brought back so many emotions and knowing that I might have to endure this game again well just sucks.
We are going to try and lend our support as much as possible. However with a heart diva that is hard to do. But we are going to try.
Many prayers are welcomed and some comfort and peace for the parents would be greatly appreciated.

eta: if another person says what is wrong with your family why do they have a black cloud or are they cursed i will punch them and then claim insanity.

Sooo.. here it is.

Hmm I dont know what to say this morning. I am okay one minute and then not okay the next. So my Diva's ticker is not behaving like well the avg ticker should post repair. First please let me tell you that I have been yelling at the top of my lungs that ms K has been having swelling and puffiness for MONTHS! I get oh it is normal or some other random thing. (not from her pedi. her pedi is with me on this) So back to the ticker issue. K's ticker has mitro valve regurg.. which we knew about. We were keeping a watchful eye on that. So forward to yesterday. I got greeted with tricuspid regurg, stenosis (can't remember the first name), and pressures are a bit on the high side. Now Kenadie's pressures have NOT been off in a while! So this slammed me hard. I work so damn hard to make sure she is healthy, does not get too upset, has the best care possible. And now I feel like I have failed her. I know in my heart of hearts there is nothing that I can do or say to make this better or go away and thatI could not cause it. But as a mother you want to do what you can. Anywho.. back to echo again. So if we had one or the other we would be okay. But now we have both. And frankly that just sucks. That is like when she had her asd and vsd. I mean if we had A and not V she would have been fine. So dallas has been called and they say there is not a contraindication for her to have the surgery so we can still go forth and if a problem should arise.. she is to be on the first helicopter to dallas!
So let me back up a bit. Yesterday I got the call from her surgery case manager. Lets call her C for this instance. C says "Hello alisha.. I am dr. t's case manager and I was just calling about Kenadie's echo since you emailed me and wanted to know about it." Alisha" okay great, let the results rip!"C says" Now I do not know much about caridac to save ones soul but I talked to cardiology already" Alisha"gulp" C says" So Kenadie's echo showed some things normal like no leakage around the asd and vsd BUT we have xyz that has come back abnormal" Alisha"oh umm really?!" C says" well i guess this is okay since cardio says that she can go forth with her surgery" Alisha"please call her cardi in dallas and make sure it is okay" C"okay great will do". So I am a bit unsettled that a case manager called me about her results. I mean umm hello.. Information you know. Thank goodness we go to dallas. They called meback and was like yes it is not good but her pressures are not crazy right now and her regurg is on the moderate side so go ahead with tummy surgery BUT know you are coming down to dallas after recovery. Okay fine with me. Her thoraxic doc is going to peek at the echo but he has already sent the email and says I WANT MY OWN DONE! Man this sounds just like him in person too! lol. Their machines down there have awesome clarity and digital gadgets and stuff. It was crazy looking at her holes in her heart when we went down there for the first go around.
Please do not say:
alisha at least it can be fixed. I DONT WANT TO HEAR IT! HEART SURGERY IS NO FUN GAME! Ask a few heart parents they will gladly tell you their thoughts of the bypass machine!
alisha at least she looks healthy. you might be missing your two front teeth.. i am tired of hearing that! looks do not get you anywhere. and IF you knew the heart kiddos i have met. you would not know they have a heart condition unless you ask their parents.
and please dont tell me that at least she does not have cancer. i might go ape nuts and have to claim insanity when i go to court for going ape nuts! lol.

So the final word on the echo and my feelers are really hurt. another echo update.

So 3 days later and we have an idea on the echo.. So fasinating! Anywho... My diva does not like to have the same results two times in a row.. I mean that would not be her! So last time our mitro valve was regurging not too bad and doing well.. Well what do you know. The regurging is a bit worse than they would like to see it at 6mos old. But we are still going to manage growth and work on our vascular till she is over 1yro. Then we are going to talk about fixing it. I am just so over this business. One moment the pressures are great and beautiful the next well mom it is a bit off. Thanks.. love it. (sarcasim) Btw we are going forth with tummy surgery and then a quick trip to dallas after we recover so they can do THEIR echo. Love it when her docs get possessive.
So i have to have a rant. I went to school yesterday to see if i could get a reprieve on my grades.. and the counselor who assisted me.. not the normal one i work with. Said just tell them in your reprieve that you were not stupid just easily distracted. EXCUSE ME?! COME AGAIN?! I explained to her that i have been living in and out of doc offices and hospitals I dont think I was distracted easily. She says well mam school should be a priority if you are going to attend. Um right.. I had to tell myself to calmly walk the hell away or I would be going to jail. This lady really needs a new line of work. I felt like a failure like I just dropped the ball on it all. I am about to graduate and had to put it off for a semester for a GOOD DAMN reason. My daughter! But I still let it get to me last night. I felt like a piece of dunk. Like i should have managed better or something.

update: i got some bad news from her echo other than what we know. i am upset right now and dont want to talk about it. when i can catch my composure i will come on and enlighten folks. please understand i am just really upset.

Happy Mother's Day and an update

Good evening. I hope everyone has a blessed evening. Today was a good day. For mother's day my husband took me on a nice quite romantic dinner that had a lakeside veiw, he scheduled the babysitter for all three, and everything! We did that last night. Then this morning he brought me a carmel frap in. Oh sweet heavens! Also one rose for every child. 5 Roses. Genesis, Alexus, Angel Robert, Angel Maddy, and Diva (aka Kenadie). I thought that was so so sweet. I went to weight watchers today too.. well lets just say DO NOT weigh after you been out to eat on a date night. But to my defense i stayed within my points. :) Anywho.. I am down 6.6lbs in 3weeks. Slow but steady and that is the best kind. Then we went and visited my mom who is still in alot of pain and got an update on my dad. He is STILL in the ICU right now. He crashed last night again on them. So no reg floor for a bit. This really does suck bad. So that was my mothers day. Oh yeah.. Diva decided for mothers day that she would give me 4 POOP EXPLOSIONS! She usually has problems just getting one bowel movement every 3 or so days but i think the bowels emptied out and just so happens it was mothers day. We went through 5 pairs of clothes! LOL!

So sorry for the lack of updates. Life has been crazy still. So we have just been on germ mode really with the diva. When we know she has a procedure coming i am even more on overkill with germs. I am too scared for her to get sick and stuff especially post op. BTDT post heart surgery that was a nightmare in itself. So i talked to the case manager this week and we are still on. We have to get some pre-op stuff done this week. We are so not used to doing all that crap outpt. I dont understand why they just can't do it when we get put in house but of course nothing is that dang easy especially at children's. Did I mention I hate it there?! Anywho. She also has to have an echo done this week. Unfortunately Diva's nurse heard a murmur this week. I about crapped my pants when she called me. Saying the m word in my house equates to the f word in other peoples houses. I am PETRIFIED of the M word. So we had our appt with the pedi on thursday and weight wise eh we are almost 16lbs now! Go chunkers go! She has two teeth that were teasing the pedi. Pedi said they would be in soon. Btw she got one last night/this morning. Happy moms day to me! lol. Anywho. The pedi and i both said echo at the same time. It was really funny. But we agreed we needed to see how that mitro valve is doing. It is the one that likes to regurgitate its food (blood). So needless to say i am very very very nervous about going for her echo. I know it can be the same or be worse. Now if it does have change we are NOT going forth with the tummy surgery. She will be on the FIRST trip to dallas. Kenadie has had her chances at a fair game and we all know how she likes to play her deck of cards so her pedi says one move and down I35 she goes! lol. She is still having purpling episodes also. Again makes me very nervous. But I have come to have a bit of peice about it. Other people not so much. lol. She is also going to have her bladder and kidney scan done while she is there at the hospital. She is having some reflux with them and we need to make sure that she does not need surgery on that also. If so they will do it while she is there.
I personally am not ready for her surgery. I hate having her sedated. With heart kids it is always a bit show when they have to go under sedation. But I know what I am doing for her is the best. Another thing that is bothering me lately is people asking about kenadie's developement. I try and beat around the question but does it really matter if she is doing "tricks"? No she can't hold her bottle consistently, grasp, or roll, but as my cousin pointed out she is kenadie and she is who she is and we will love her for that. She is a happy baby that loves to smile and just light up everyone's day. Trust me if you have met her in person you know what I mean.
I also have not learned on how to not answer a few phone calls. It would help if they called from the same number. lol. But I recieved a call and I dont know if this person does it intentionally but when they call it is so insensitive it is beyond belief. I am almost in tears when this person talks to me. Yeah i try and hang up but I also want to keep calm waters in my family. kwim.
Lately i have had more night mares too. I dont know if it is a mixture of the surgery coming up and the recent phone call. But last night I woke up crying and put my hand on her chest to make sure she was breathing and okay. It did not help that she had a severe sweating episode thursday night either. Well that is about it. I will update after her home health nurse comes out tomorrow. She has one serious granuloma on her gtube. I am very concerned about it and infection.

A Friday update!

Good morning all. Hmm where to start with everything! First this is ms K in her bath earlier this week. She just loved it so much! Oh and btw I blew a raz at my 4yro daughter while we were playing and she did it too! It was hilarious watching K trying to immitate me. Good entertainment for a while. :) Oh and I have to share this hilarious song about the swine flu! http://www.youtube.com/watch?v=t-FV-9HqXH4 Love it!

So we have a date. May 20th. May 19th I have to call C to find out what time are we admitting. then on the 20th we shall have our tummy surgery. We are not sure how extensive this is going to be due to part of it being an exploriatory surgery. So i will definitely be sending out updates all day that day. I have a new trusty laptop! Just hope I remember the battery! lol.

I have an interview on monday for a nursing tech position. Just to kinda get me in the doors. And then I take my nurse entrance exam on may 12th. I am praying this is my time to get in the career. If not it is okay. I will try again some other time.

I love these lyrics.

Matthew West - MoreFrom the album Happy
Take a look at the mountainStretching a mile high
Take a look at the ocean
Far as your eye can see
And think of me
Take a look at the desert
Do you feel like a grain of sand?
I am with you wherever
Where you go is where I am
And I'm always thinking of you
Take a look round you I'm spelling it out one by one
CHORUS:I love you more than the sun
And the stars that I taught how to shine
You are mine, and you shine for me too
I love you yesterday and today and tomorrow
I'll say it again and again
I love your more
Just a face in the city
Just a tear on a crowded street
But you are one in a million
And you belong to me
And I want you to know
That I'm not letting go
Even when you come undone
Repeat Chorus
I love you more, yeah
Shine for me
Shine for me
Shine, you shine, you shine for me
Repeat Chorus
I love you more than the sun
And the stars that I taught how to shine
You are mine, and you shine for me too
I love you yesterday and today through the joy and the pain,
I'll say it again and again
I love you more
I love you moreI see you, and I made you
And I love you more than you can imagine
More than you can fathom
I love you more than the sun
And you shine for me

I was having an issue with my diva this am.. she is having motteling going on with her and i heard this song on K love. I love it. I love my diva more than she will ever know.

Sit tight for a long post! Plus ms K is 6 mos today!

Good morning. So i am in a blogging mood today. So much on my brain. Hmm where to start. I will update about our weekend first.

So Friday I finally went to the doctor for myself. She thinks I could be diabetic. Eh whatever. But i will keep an eye on it. I had a sinus infection and she raised my zoloft up. Gotta keep this momma sane! lol. Then friday evening the girls did not want to come home with me. They wanted to stay at granddad's. Okay fine. So he let them. Aaron and I went and picked some things up from the store with ms k. It is such a difference when you only have one child. lol. Then saturday morning aaron and I went to breakfast with ms K. Went home and took a nap. After that one of the residents i work for asked to keep kenadie for a bit. So we went to dr. r's house. She had a good time. She was there for 2.5hrs. I had a panic attack and had to pick her up. Baby steps i will have to take. After that i went to pick up the other two kids and drop them off at home. I went to see my dad. And that is where my life goes back to hellish!
I walked in his room and notice he is laboring really hard to breathe. I ask my mom how long it has been like this she says for a while and that she could not get anyone to come in. So i go get the nurse. His pulse ox is 66! WTH! Then the resp girl and I got into it. She thought he was fine! Maybe a bit stressed. Umm what. His pulse ox is supposed to be 96! So i told her i want something done and NOW! I demanded the supervisor and finally got things on the road. They did an EKG and that showed bumpy waves, then their was NO breath sound around his left lung, and his CO2 sats were horrible! I could beat me some nurses! What crap! So they rush my dad downstairs (ICU) due to him being on max O2 flow. While that is going on my mom starts spitting up big blood clots. So i rush her to the ER downstairs. They tell us have a seat and dont even do her bp. I call 911 they wont do anything because she is on hospital property which is crap! A gun shot victim was brought in by his "homies" bc he was shot in the leg. And i am sorry.. but the terd can sit in pain. He was dumb enough to go get himself shot. And yep i heard how he got shot straight from his "homies" mouth. *shakes head* Anywho they told us that they were too busy. Then went on divert. So we got to St. Anthony's and they were of course busy. No nothing can be damn easy. We got there about 8pm and did not getback to a room till about 245am. My mom was in alot of pain. But of course was like first come first serve. I am sorry but a woman spitting up blood clots and dizzy is a little more acute than a kiddo that hurt his eyeball. Call me cold or whatever. Anywho.. her sinuses are full of blood right now due to how her face is fractured. So i finally got home around 9am sunday morning. Only about 2hrs wink of sleep yesterday and then told aaron i was going to bed early! That plan would have been great had ms k behaved her little self. She is just having issues with her belly. Poor girl just arches back and screams. I usually vent her tube and put some tummy meds in there and she is all better. Then a lovely family member of mine called. Lets call this person.. C. C called to say alisha i am so tired of my child only wanting to eat mac and cheese and chicken nuggetts.. umm i am sorry. I would love for kenadie to be able to eat all her meals by mouth. Sorry not much sympathy coming from me. Then C says how are the girls doing with the wreck. I tell her that genesis thinks every brown man is going to hit her. C says just tell her to get over it and to get in the car. What excuse me? Then proceeds to say if you are going to die or whatever then that is the way God has it. Umm excuse me?! What?! Come again?! I thought icould not hear the most insensitive crap in my life. So like one advised me.. I pay for Caller ID for a reason and use it! lol. Some people get to me. Then when she was asking about kenadie she says well she weighs more than so and so and just think she is alive and not mentally retarded. Come on.. I have been through hell and I really dont want to hear this crap. Yes she is alive and yes she is not retarded. But they are still issues to us that is hard to deal with. I am finding it is easier for someone to say stupid stuff when they have not been through it. So I found myself crying my little heart out after that phone call.
So today has been a typical monday of sorts. Satin oh i mean co-worker.. is being herself. But I am not letting it ruin today. Kenadie is 6mo old! I am so proud of my heart diva! 4 mo ago i would have not thought that my cv-icu baby would be 6mo old! Go ms K!

An update on everyone

Hello all. The update is here on my dad and family. My dad is in the step down unit. He has several injuries. He has a chest tube at the minute to help with the fluid on his chest. My mom is out of the hospital but is going to have to have surgery on her face and knee in due time. Her left oribital bone (eye socket) is fractured. She is in alot of pain. They have her on a pain patch. Genesis (my 4yro) thinks that everytime we go in the car we might get into a wreck. Which makes me a very mad mother. My child should not have those fears at the age of 4!!! Also she had a pretty big bruise on her abdomen. Alexus has a laceration on the head that should have had stitches but the trauma team did not even clean it or anything. I know their main focus was life threatening injuries but please clean a deep cut. Also her hand got injured. Pedi says that she probably just bruised it. So now i am trying to also help with my grandma's care because my mom usually does it and she is out of commission and my grandma is very picky due to some very good reasons who handles her doctor appointments and stuff. So for right now we have grandma taken care of also.
Ms K.. well hell that is a whole nother story. Ms K is having issues with her G tube. So we go see the surgeon on Tuesday at 1pm. He will let us know when he is available to do the surgery. So we should have a specific date for that. When they do they might have to redo her pyloricstonotomy (loosen tube that goes from stomach to bowel) due to her slowly digesting her feeds. They are also going to scope her little tummy and keaster. She is slowly getting over her respitory virus that she had. Still needing her neb treatments. K will be going back to vascular in may. We have decided it is time. Ms k does not like holding her O2 stats when she is held upright and her bp goes north when doing so too. So here we go onthis wildride again.
I am also taking my nursing school entrance exams soon. Please pray i make it in because Lord knows i have a great fund of knowledge but only a business degree. So I am ready. It would be such a blessing to my family.
Thank you everyone for supporting us through this journey! We appreciate it all!

Finally getting a minute

Hello all. I am finally getting a minute to update about our crazy weekend. First off Ms K went to the heart walk this weekend. We had such a blast. We are holding another fundraiser. We are going to make t-shirts that say help fight ped heart disease. They will go on sale next week. All sizes are available. I will post the website when i have it.
So now comes my weekend and week thus far. Ms K had a severe allergic reaction to the meds on sunday. She destatted and had to go to the hossy. While i was at the hossy i recieved a call that my mom, dad, and kids were involved in an accident and a very serious one at that. They had to use the jaws of life. Now this was horrific to me as i am here at a hossy with my daughter and my husband left his keys in the diaper bag. It sucked! So I called one of my attendings who called a resident of mine and he helped us so much. My mom was hit by a drunk illegal alien who left the scene of the accident. Luckily he showed up to the hospital to get some care. I am very angry right now and have a bit of hatred going. My dad is in the step down unit now. So he is progressing in the right direction. My mom and dad have extensive injuries that are going to require rehab and stuff. My kids only have minor scratches and bruises thank God for carseats.
Ms K is pretty sick right now with respitory issues. We have an appt tomorrow. So please pray for my sanity right now.

Gtube infection and another surgey on the horizons and a bit of a rant

So the title really explains it all. We went to a local hospital one that i love and is a 2nd home almost. They got us in fast due to her not needing to be around germs. The doc came in and says wow that hb is fast. Hmm yep. Oh btw her temp went back down but we still had a pulse of 196 while sleeping. So not good. Anywho. She does not have traces pneumonia at this time. And umm she does have an infection so we have to keep an eagle eye on that.
So yesterday we go to our pedi.. the pedi calls our surgeon for the gtube and what do you know. He says he has to take it out and redo it. Well this sounds easy right?! Wrong! When you have a heart child. NOTHING is easy! They have to take extra precaution especially when it comes to the diva. So she has three more scripts that she has to take. She is getting a bigger gtube also to help with some of the drainage stuff.
Okay here is my rant... Yesterday I am at the mall.. We were walking.. Kenadie was fussing and so i decided to let her comfort nurse. Although she does not get a whole lot of her calories this way we still try often. But trust me i was not in anyway exposing myself. I have the watch dog aaron. lol. So we are over by the little toy machine things and some employees from chickfila were making fun of me and making comments. Finally i was like how immature are you for snickering and staring and making fun of a mother. I am just damn happy i can try. I did tell them if my nursing bothered them thenthey needed to put a blanket over their heads. (thanks ivillage!)
So my other rant and loads of rambling because i need to get it off my chest.. hmm lets say person X (for confidentiality reasons, due to family members reading this) calls me and says i am so irritated. I have two children one that is healthy as a horse and another one who is sick all the time. I am like oh yeah.. She says I hate that she has sniffles and sneezes. HUH?! Okay please I know that having a sick child is hard.. Do i know that. But please dont call me and complain about your child. I was like yeah Kenadie is sick too and it sucks. She was like oh you dont understand. Okay.. sure. Then person X was like alisha..remember you wanted Kenadie and you signed up for this. Hmm so what did i want to tell her.. Hefer I did not call you.. You called me. I was not complaining. You were. But what did i say. NADA! Then the unmentionable question was asked yet fing again! Do you think that your meds caused this?! Okay.. I am going to get a recording so when some dumbass says something I can press the response i have prerecorded. Also please dont ask me for an update if you dont want to hear the good and the bad. Kenadie has days where she does great! Where i can say oh she held her bottle. But we have many setbacks. so when i have to convey those.. Dont yell at me about them. I cant help it! Being a heart mom is not an easy job! If your not with me and support me in a positive manner go the heck away! Example.. family member E gets mad because i forget to give updates then yells at me. How i am not keeping them in the loop and how i am not being a good _______. Ask any heart mom out there you have too much on your plate to make sure every tom pick and harry and informed. If you know i speak to a certain relative ALL the time.. heck call them and make my life a bit more easier. Also dont tell me i am TOO EMOTIONAL. You try going through what my husband and I am going through and then let me know that i am too emotional.
Okay.. I am done griping right now!

Oh i love it when the diva is being a diva! Plus a few pics!

Btw if you can not tell by now.. That is load of SARCASIM! So yesterday my grandma says that the diva is really sleepy and had only had 3 bottles. What... GMA SHE HAS A TUBE FOR A REASON! But my gpa refuses to force feed my daughter. I dont think he gets it that she is a special needs child! I mean I am learning to accept the fact that no she is not like everyone else and yes she has some needs and demands that are different from my others. Hello this is not new. It has been going on for what.. Almost 6 MONTHS! So we get home last night. Nope does not want to eat. Okay you asked for it. She is getting tube feeds now. :( Then her pump decided to go ape nuts last night.. Speaking of I am going to call her home supplies company and let them know that i have a pos for a feeding pump. Actually while i am typing this i am on the phone with them now. So anyways. I gave her some boluse feeds and she was okay. I thought she was running on the warm side of things last night. But kind of blew it off. Then today nope I was right. She has a 102 Fever. Now my little lady is not supposed to run a temp above 99.5 due to her precious little diva self. So she better get this in check or her pedi says to the hossy we will go. hmmph! Now i called her home health nurse this morning for her to come check her out. She was like she is a baby she is going to get sick. And i related that back the pedi. Oh she is hot! She is like we can not and will not throw caution to the wind with the diva. She said i tried that once before and it bit her in the ass. So she says not on her watch will she allow it! So i have a feeling that a home health nurse is getting her arse chewed on and spit back out. So i will wait to find out what we are going to do. I feel a blood draw coming on.

So as soon as i get off work i think we are headed to the ER. Her pedi says no rush but she is not comfortable now that it is 102.8

Hello All!

Hello! Another week started. I hope everyone had a great easter. Mine was good. So I shall catch you up from Wednesday on.
Ms K had to go to the doc on Wednesday evening due to an infection in her eye. We then decided that she is going to go to Cleveland Clinic for her purpling issues. Her pedi was so happy to see her. She says I missed my baby. Umm my baby thanks! lol. We put K's eye drops in and her eyes almost swell shut. Okay severly allergic to Vigamox. Then my tooth broke and I was in some excruciating pain. Thursday morning I went to the dentist accompanied with my kids godmother and they pulled all four wisdom teeth. OUCH! Is all I can say. Honestly it was better than that nagging pain. Then I went to the Gyn well I did not like what he said. He says a hysto is in my very near future. I dont want to part with my "ziploc container" as my father in law says. I dont know why. I mean tubes can be untied these days but as far as I know there is no such thing as a uterine transplant. lol. I know I don't want anymore bilogical children but I just am not ready. I am in my 20's.. Maybe when i turn 30.
So Friday I decided to take my kiddos and I up to tulsa to see family. We had a great drive with my mom. Kenadie wanted to be a diva in her seat as usual. Turkey butt. We got there and then she decided oh wait I am going to leak my G tube everywhere. It was really hot and red. I was like damn we can't go anywhere without drama! lol. So we are waiting on our home health nurse to come look at it still. Saturday she decided that she wanted to change a bit of color, sweat, and have her G tube go nuts. AH! Fun right.. not! lol.
I am so tired after it all too. I need some good sleep. Sleeping on a couch.. does not get you too far.

So much for that medical break! edited at the bottom due to ms k's recent activity

So i have had this attitude where i dont want to talk about it, think about it, and do anything about her medical issues. This morning at 652 am Cleveland Clinic calls me and says good morning Ms. diva's mom. After reviewing her records our vascular medicine docs would really like to lay eyes on the diva. Hmm now before my experience in temporary hell i would have jumped at the chance. But I told them that I would like them to speak to my pediatrician before I go anywhere and take any time off. She totally understands. However the chairman proceeded to let me know it could be a serious issue that might need to be dealt with. Hmm people like i dont know that. But i am not traveling all the way to Ohio for them to say eh she is fine and go back home. kwim. So i want my pedi to talk with them so we can be on the same page. It is a bit financially straining to be traveling the united states for care. I wish shriners could help but that has been ruled out for now until we go see the orhtopedic doc for her foot that turns horribly to the left.
Today i feeling a bit on the emotional side. I can not stop bleeding to save ones soul. Again please vote for Alisha to be the president of Always company. It has been 5mths and some change now. I am very exhausted. I think i have a virus or allergies of some sort and i am just run down. I am going to the doctor for myself tomorrow and i will have him do blood draws.

ETA: My mom just called and said that ms K is having a tough time this morning. She said she is a bit rattly in the chest, very nasly, and her eye keeps matting. ERH! So we go to the doc today at 1130am. Lord can you keep this baby healthy for a bit for me!

Hello!

Good Afternoon! So far life over here is going. We got an approval to go to the Cleveland Clinic. But I am not going anywhere until they review her records and see a need for it. Also at Duke they want us to come in. Again. It is not down the street my friends so we want charts and what not reviewed.
Overall we had a descent weekend. We went to the MDA beauty pagent. It was okay. Live and learn. I will never put my child in one again. I dont care if it is for chairty. I will send a check and tell my office to go shoot ducks! lol. We also finalized a deal on a van.
We went to church for the first time since ms K has been born. It was nice. We went to my cousins church. It was so nice to see her family. People just loved on K and my cousin put her to sleep for me. We were doing good until we got home. She had a cynatoic (destat) episode when i got home. :( And frankly i am done with them. Just over them. I was at walmart with her God mom when it happened. I think she could see the disappointment in my face. On friday she had a really hard time with gagging and wretching. We have not changed a thing in her diet at all. I dont know what is her issue with that. I vented her tummy and she was good but had a lot of risidule. So i will talk with her pedi next thursday about it. She is having too much risidule at times. Like her tummy is not moving along properly again.
I have also decided to apply to school. I had to drop out this semester due to all my glorious activities that have went on. I am hoping and praying I get accepted in the distance learning program that way me leaving wont be such a deal. Either way. Eh it will all work out as my husband has told me.

Just a few pics from my champ!

Hello all! Just thought i would share a few pics of my champ! She sure is a happy girl with all things considered. She was such a happy girl this morning.

So right now we are taking a week off. Her pedi is out sick this week so we are using that to rest our brains somewhat and give ms K a break. She has all her monitors and what not at home so we are good to go.

Today i am having one of those days. She inspires me so much so I think i just need to take a look at her pics when i get down or hear a stupid comment.

When we were in memphis.. a family member asked me.... now alisha.. are you sure the meds you took during pregnancy did not cause this? Really i am going through a living hell do i have to get made to feel this way? DO I NEED TO MAKE A SIGN FOLKS?! So i politely say medical research points to NO! We dont know why ms Kenadie is the way she is but really i think she is pretty freaking special.

You know some things also trigger me other than people's stupid comments. Sometimes i will be doing my work and all of the sudden it seems like a flash of her being in the cv-icu flashes in my brain. Why? I have no idea. Maybe i am not supposed to forget it. Like one could.

Oh my i have to tell you this. We went to my cousins car place yesterday to find a car and salesman M says oh i lost my son when he was 10yro due to renal probs. He said you know the stupidest comment came from a lady we knew so well. She says M you know i know how you feel.. I lost Ruby when she was 7yro. He says really who is Ruby? Ruby is their DOG! Okay folks i am an animal lover yes indeed but losing a dog does not compare to losing your child! I can't even relate to that. I can relate to the fear of losing her. Btw just for the record. We have had that same exact comment from a dr i work with. Yes she is still living. Security prevented me from throwing her out of the window! LOL. JK!

When we get our van i will have to show a pic. Kenadie needs this van as much as mom does. We have her apnea monitor, pulse ox, emergency O2 that has to travel with us everywhere, feeding pump, and normal baby equipment. Then you add my other two girls to the mix too. Yes we need the room. So uncle sam. All my taxes are back at ya helping the economy. :)

Btw Jen.. Thank you so much for your gift. I so appreciate it. If there is anything i can do for you please let me know! Your an angel dear!

Also i want to thank you all for you support and prayers you people really help me stay sane. I have a couple people irl that are helping me with my sanity. My cousin.. who has been and is being amazing. She listens to me cry, get angry, and she gives me great advice. (mother of the other K) Jill she is from the heart group. Man that woman is amazing. She can endure all my smart ass remarks and help me come up with a few too. :) She has heard me cry and as a fellow heart mom she knows the fears and what not that comes along with it.

Well i shall post more when i talk to her pt and her home health nurse. I am crossing my fingers it was a great day!

A long update. Sorry for the lack of.

Very crappy internet signal here. I have to cross my toes just to type this. lol. So we are going home probably today or tomorrow. I never thought i would find a worse hospital than the one i dislike in oklahoma. WRONG! Sad when the nurses admit it too. You tell the public you are at L in memphis and they are like omg i am so sorry. Wow. That makes me feel great. So from the start it has been crappy. We get here at 330 am after being on the road for 8hrs (could not fly as they were ginormous amounts of money, but am flying home.) No body knows who the hell we are even after telling me that the ER would. Trust me it was not because the ER was busy bc they had one back in the ER and that is it. The lady even said wow we are dead right now. Well they only have 12 beds to begin with. So yeah. Then they tell us to go burn time till 9am. Okay then say better watch your backs the crime rate here is worse than detroit. Holy lord what have i gotten myself into. So i am nuts and have not ate since 4pm so i am like lets go. We go to denny's and find out just what they are talking about. Oklahoma is so calm compared to some places. Then we get back at 6 am and the nurse bless her heart puts us back in the procedure room and let us sit back there. I call our nurse manager still nothing. So i finally get ahold of my pedi who calls Dr. K and we get the show on the road. Now the admit girl lord i would love to know how she got that college degree that was hanging on her window. She was slow and i dont mean pace either. We finally get up to our room at 10am and they tell me K has to be NPO. Okay fine. Then they echo tech comes in and does her scan he says well i heard you are in the OR in the morning. Umm DO WHAT? Then she has her ekg.. that was fine. Then they say after she has had nothing to eat or drink since 6am that oh yeah we can't get the tests done. So they ask me for the 5th time what she eats. I told them Alimentum. The nurse says oh i dont know where to get that at. WHAT?! She says oh she is going to have to wait. By that time i was ready to go home. People their attitudes and crap here was HORRID! Lets just say they were not happy we were here at all. Then finally around 7pm dr. K comes in and says get comfy let us figure out what is going on and i am too tired to do it right now. So after 40+ hrs of no sleep i was a bit dilusional. The nurse that night had to give me a play by play till i told her to HUSH! Dont wake me up to tell me she X amount of pee in her diaper. Then she was supposed to be npo at midnight. The chick does not turn her pump off till 4AM! There is no such thing as commuinication up here. It is horrible! So after all this is done and said. Ms K has a leaky valve in her heart. They are just watching that. Her patches look beautiful. Which is great. She has a vein malformation that does not connect to the heart which we found out why dr. K is not going to touch it. Then her bladder and kidneys are refluxing. So they are going to do a test on those when we get home. They are also going to do another test down her throat to figure out why she can not consume more than 2oz at a time. Personally i want nothing more to do with this hospital. Dr. K is a wonderful surgeon when you have that problem right there. He has touched so many lives. But as he told us. I am not confident i can do this so i am not. I will leave it for someone who is more versed. Now that is fine with me. However WHY did we come to TN?! I just dont get it. I am a bit rundown emotionally and right now i think i am going to take time to sulk and i will pick back up and be back in the game. As for Kenadie. We are told it is not going to make her "DECOMPOSE" so i am going to back off trying to find an answer right now. There may never be a true answer for what is going on and you know as long and she is happy and her O2 levels can bounce back. I am good. I am just so disappointed.

I need a bit of help! WE ARE HEADED TO MEMPHIS!

For those that asked if they could help financially and i said i would let you know. Well i am saying it now. We just got a call from our pedi saying they need kenadie down there tonight. AA wont let us have a medical flight unless they have 5 days notice. :( So i have to pay out of pocket for a flight to get there. It is 9 hrs drive time.
email me if you would like to. please dont think i am asking just to ask. i am addressing this to those who have asked.

if you are an iv mom.. email me if you live in memphis. hancock _ alisha @ hotmail. com (without spaces)

A good laugh and a good cry

So this morning i shall start with a good laugh. Sometimes i think God has a way of cheering us up. Yesterday after work i went to go pick up my girls from my gma's house. I see 1 huge box, 1 medium box, and 1 small box from our home supplies company. I am like okay small box is formula. Medium box is bags for machine. Wth could be in the huge box. So i see medical straws on the outside. Hmm okay they did this before to disguise her syringes and what not. So i open it up.. people.. i died laughing. It is 15000 INDIVDUALLY WRAPPED STRAWS! On the front of the box it has kenadie's tag and everything. So my gpa and I got a huge kick out of it. We were like man kenadie is going to be drinking ALOT if she needs straws already. And this is for one month supply! lol. Ah it provided good laughter. They sent us a nursing home shipment and the nursing home got our shipment. what they are going to do with baby g-tubes, syringes, and more formula.. hmm i'll never know. Maybe they were trying to make them feel young. ;) lol.
So yesterday.... I called my pedi in the AM because i wanted to convey the info about TN. I had also recieved a call from Cleveland Clinic saying that she has been approved to come to their clinic. However we would love TN first. So my pedi called me right back. That NEVER happens and it is not good obviously if she does. Esp when you have results pending. lol. So she says Alisha this Donna.. Umm hun i need to talk to you about K's bladder and Kidney scan. Okay.. Then i knew it was not going to be fine. She says something is not right with her bladder and kidneys. The bladder is dilated and so is the kidneys. Now this would not concern me but with everything else she has going on it does. And her pedi said hun i dont know how many more times i am going to have to deliver bad news. She told us she loves kenadie like her own daughter and it is getting harder each time. So then she got down to the meat and potatoes of it and just told us that her bladder and kidneys aren't working they are supposed to. :*( DAMN DAMN DAMN! I just fell silent and she asked if i was okay. NO I AM NOT OKAY. I AM TIRED OF THE SETBACKS! But i calmly said okay umhuh. She said they need to sedate K and do a dye test in her bladder and kidneys and check the quality of blood flow and what not. Then she will have another procedure to fix what is going on with her little body.