3 days post op

And the pacemaker is already getting a workout. Last night her pm kept firing off. The nurse got very concerned. She called the attending and they did her ekg. Well they have not a clue why it fired off at 60bpm but it did. I suggested it was bc when she trends down it skips a beat. The resident was like oh no. Cant be it. Um yes can be it. I suggested it to the dr and he was like yep mom I think you may just be right. It detected the off beat and whack spanked it butt in gear. ;) She almost bought her a one way ticket back to the icu. Frankly I am so over with being in the hospital. I am ready to go nuts. So that would not have been plesant.
Today she is dumping, vomiting, and well sweating like you have her in a sauna. I want to say fix the vomiting and let me take her home. They want to nit pick which I am happy about bc we cant do any infections. But resident x seems they know everything under the sun in the past 4 months of their resident career. HA. Resident x and i had a very cordial talk and they found out I am NOT stupid by any means and yes I do understand it is pretty rare which resident x says mom you know not alot of people have it so their isnt a whole lot we can do about it. NO WAY.. i thought that was what rare meant. Again I am to my not pleasant state when people dumb down me.
Today I am full of anexity. I live I dont know how many miles away from nc and we are going to go home with this implanted device. I am scared if something goes wrong or whatever. I am scared for so many things. This brings a new life for us in several ways. As you may remember a pacemaker is not a cure. It is to help her quality of life. It wont stop her from passing out or the hr from getting low. It will stop the heart from stopping though and making it go back to 80bpm so maybe the spells wont reak too much havoc on her body. Which btw the antibiotic she is on right now. It is killing her autonomic system. Playing some very dirty games! ugh.
Right now I could go for a good margarita and some good music. I miss my older children. I hope they understand why mom has been gone for two weeks. I hope one day they dont think I am the worst mom imagineable. I would have done it for them too. I love them beyond words can say. I hope it shows.

pretty sure I am exhausted!

Today was one of the hardest challenges I think I have faced. Going thru the ohs with just my mom. Granted I could call whoever I wanted n talk its not the same. I had to prep myself for the good, badn the ugly. I actually had the thought what if she passes away? What if something happens? My brain was not to kind in the world of me. Heart surgery sucks. I wish we didn't have to put her through this but we did. This was our one shot at a quality of life for her. Not quantity people. This is not a cure n today I had to face that too. I pray his has a good plan for her. I hope the good lord uses her in great ways.

My letter to my daughter. Kenadie. I want you to know I love you with every beat of my soul. You have such fight and will. I hope you can show others just what a champ and inspiration you are. I love you more than life. I am so scared every time you go back in that or it will be the last time I see you. It kills me to watch you struggle. Know I love you and would do anything just to keep you happy n healthy.
Love
Your mom.
this post was done on the night of her surgery.. i have no idea why it says tonight.

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0 is NOT a good number!

So.. we are up in north carolina. We arrived on tuesday. Went to the dr on wednesday. K was having some issues. Her hr dropped severly 3 times during the day. Causing her to wipe out. Then thursday we seen dr kanter. He took a few looks and goes in pt you need to go. So here we are. Thursday night was a pia. We got into our room approximately 7 pm. Then all the admit stuff. Then they decided to wait till 2 am to poke my kid for an iv. Say they are getting her an mri at noon, noon rolls around and bam no mri so she got stuck for no reason at all and was npo. But she did get her echo. Then they drew blood. I could have kicked her ass from here to oklahoma. She dug and dug. My mom told her to STOP! I was in the shower. I come out.. I was like one more and then LEAVE! they weren't vital labs. So she rested the rest of friday with lots of low hr. Then the resident bright and early this morning said mam her alarms kept me up alot last night. Well excuse me ms.. but you are training to be a dr right?! Get used to it. ugh. So the day progresses and she passes out this time she has a spell of asystole! That means 0. Nada! For 3-5 seconds. Then she popped right back out and was good to go. Then she did it again. I wanted a dr to speak with. But of course I got a resident. Much love to them but I want THE dr I flew half way across the country for.
That I have to say was one scary moment. I never thought I would have to push a code button or er stat button but i was pretty close 3 times tonight. I just wish they would get their shit together and get her pacemaker in. This can't be right. ugh.

Ohio trip

Today we are on our way home from Ohio. I am so ready. I love our friends there but I miss my kids so much.
Dr s said nothing has really changed beyond lower number. He wants blood draw to be done in 5 week then be seen in 6. He thinks her TAD is what is kicking her blood. He was happy with her then we went for some rest.
Tuesday we seen the Autonomic group. They determined that she is getting worse.:( her vitamin/amino acid treatment has not been helping at all. They dont want to mess with it until we get done with nc. They agree this baby needs some help with her heart. It will give her the best QUALITY of life. N that is my goal. No one is god n they can't tell us how long we will live. But I want her to be comfortable. So. We head back in a month on Christmas break to do some stuff depending on what goes on with nc.
My mind is shot right now. I am tired. Drained. N just ready to relax some. It's hard hearing she is getting worse even though I have been preaching it this. I just don't understand any of this but what am I to do. I was put on this earth to be her mom.
We have the holidays coming n may not even be home for them yet again. Which is small crap. I just want my older girls to get to enjoy them.

One thing I want to reiterate is that not every special needs child has the look. Blood n organs can't talk. N just nc they act out does not mean they are spoiled or brats. It means they have a medical condition. K gets easily over stimulated n then we are paying for it bc her body n brain can't figure how to process it. So it gets difficult.

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this might make you as irate as I am.

So everyone wants to know what and why they wouldn't do anything for kenadie. Well about 2 months ago we went to the cardiology appt n they said they would work with her disease and that she would get a pacemaker come next October. Well she has this huge episode and having 20-40 alarms a day now. They don't want to do anything now. The Dr said that he thinks nature is trying to take its course. But you know what we don't say that with any other disease. This is bullshit. Don't tell me well we are going to just let her die. Go f yourself. I hope they can sleep at night with that shit. I want someone who is going to be proactive for my daughter. I will fight for her till my last breath. I might have to sell my ARM n aeg but hell I don't care this is my child. Please pray we find someone can help her.

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pretty sure I was so mad I could see red

On Monday kenadie got her first Hizentra infusion. I was watching them talk about her dose. I knew what another company had said about the dose for her. They had said 2000 mg. Well her Dr said it is 6000 mg. I knew it was not right. I knew it. She was showing symptoms that night. Bc it is sub cu meaning under the skin not direct in blood she would not show the full effects of being od until Wednesday or so. Well I called her Dr yesterday in Ohio the nurse said she was to get 2000 mg every 10 days. I knew it. So I rushed her to the er. We are waiting for more bw to be done. It can throw them in chronic kidney failure, lung swelling, systemic menengitis, brain swelling. So now we sit n wait. She is running a fever then runs very cold, vomiting. I am so hurt by what has happened. I feel like I let her down. I am supposed to keep her safe. My trust in drs yet again been broke. I work so hard to keep this child alive. Someone's carelessness puts that in jeopardy.

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Just the experiment!

Hello... Tonight is how I am feeling about this situation. I feel like she is just the experiment. I know in essence we are and that is how things are found and cured. But for one time I would like a clear answer and easy cure. I know that is not how it is meant to be. After all if that were the case I would not have met half of the people that support us. Then I am trying to help people in a positive way through my experience and I am glad I got to help one. I share with you a letter that a mom sent to me.
Alisha,

This is Jill, Mike's wife that you met at 50 penn place. I just wanted to say, thank you so very, very much for referring us to Dr. B. That was so very nice of you to take the time to tell Mike all about him and send us that direction. We love him!!! We are so relieved after the first appointment with him that we have a new, positive direction for our lil Riley. We have you to thank for that! We wish you and your family the very best! May God bless you as you have blessed us by your story and referral.

Thank you!!!


Jill

Tonight that letter boosted me up. I am glad the resources that I have can help in some sort of way. I pray when i become a nurse I can help more parents that are thrown in this ring of fire.
Tonight I am frustrated bc alexus has strep. Kenadie is sick. We cant start treatment until she is somewhat healthy. WEdnesday we do yet another blood draw. I hate to see her get poked. It just really sucks. I am hoping her body takes to the antibiotics and helps her with what she needs.

Ramblings tonight while at starbucks.

So I am sitting here at starbucks supposed to be studying and figured I might just get on my blog today.
I would like for people to have more understanding of my daughters disease but I am not sure they are open to getting it. I can't just pick up and go anymore like I used to with her. I have to think will she be touching anything, do i need to get her mask, is this something I can wait to do. Its not fun trust me. I would love to go hang out with whoever but that is just not in the cards anymore. I have to ask has your kid had the sneezes in the past two days, snots, fevers, rashes, diahrreha, and the list goes on. HEll i have to do a medical assessment on them pretty much.Good thing I am going to nursing school.
My nerves are at an all time high tonight. Tomorrow we have a phone covo with the dr to see what we do about the medication that kenadie is going to be recieving through iv. I am nervous. Its a change. As soon as I get a rythym of goingn to this doc or that dr all hell breaks loose and we get another change. I am scared that she wont do good on the drug and have crappy side effects like she does with most drugs we try her on now. I dont want to see her get poked all the time either. It really sucks she can't have the port. Plus tomorrow forces me out of denial land. I like to keep my vip membership and i have a feeling an eviction notice is coming. My brain loves to see kenadie beautiful smart and healthy on the exterior bc she does not have that outside markers that she is sick such as a facial deformity or whatever. So if she has her good days your brain drift off to denial land. But when I realize a big dr appt comes my aneixty and panick attacks suck. Especially when i deal with peoples remarks too.
Just the other day someone wanted to know kenadie's beginning story and they asked me from the beginning so i told them how the pregnancy and stuff went. So the comment I got was do you think your body was trying to get rid of her and you tried to hard to keep her?! WTF?! I really thought I heard it all but I guess not. It was a person on the floor where i was taking care of pts. I swear they get so desensitized some times. They need to remember I am a mother and I have feelings like anyone else does. She is my child not specimen or something.

Btw keep your eyes peeled for a resale shop i am going to be opening. It will have childrens clothes, toys, and good stuff in it. all like new or with tags on. All proceeds will be going to flights to cleveland and amino acid treatments.
we also are going to hold a birthday/charity party for kenadie! October 30! Keep your eyes peeled for where and time! You can always be there in spirit.

ramblings!

Tonight I am blogging from the phone so bare with me on my spelling and punctuation.
I am finally getting better with the idea of kenadie diagnosis. BTW she has immuno complex deficiency disease, total dysautonomia, mitocondrial disease. feel free to look them up. I will post links on my Facebook on the type of Ivig that she will be getting. the medicine will be given through a sub q method. she can not have a port. with the immune disease she has the port can kill her. so that's out now. we are praying insurance covers it. they don't cover out amino acid therapy. please do me a favor. keep your Google results to yourself unless its a cool treatment option. I prefer to not Google it to death. with kenadie she is pretty rare anyways so I try not to worry more than is needed.
for those that dont know what an immuno disease is basically you have fighters that kill of bacteria n diseases n she does not have any fighters to do so.
the Dr will be talking to us about the adjustments that we need to make tomorrow. I have a couple worksheets that I will scan in so those who are wondering can look.
as of this moment I feel like I could have a big cry any one moment. I don't get it. but we will keep pushing on. sorry I am getting tired. I will update more this weekend.

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Strawberry margaritas and doctors!

hello. tonight is an interesting night. sitting here sipping on my strawberry rita reflecting on this clinic that we just got done with. so they were running late with clinic n the pa came in talked to us evaluated her symptoms n her body. the Dr concluded that she is getting worse. he evaluated her bw and thought something was alarming. so they called the immuno doc n he said that he needs to see her ASAP. the doc was on vacation that specializes with her needs so we have to wait till Monday. I am very nervous.
we are staying with a friend that live in Ohio. they have been fantastic. considering the Ronald house was not a good experience yet again. we decided to leave the Ronald early. its nice having someone to joke with.

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Post cardiac electrophysiologist!

So before i get started. Some of you might be scratching your head trying to figure out what kind of cardiac doc she went to. She went to one that deals with the electric in the heart. Your sa node is the body's natural pacemaker and it creates the electricity that you have to pump it with. ;) So breif review there.
Well her ekg was as good. So was the bp, temp, and hr. We would have liked to see it higher but she has to show her doctor that she can perform for him at anytime. So dr P came in and said she looks beautiful. He asked her if he could listen to her heart. She said NO! MY HEART! He said well can i listen to your juice? NO MY JUICE. Then he said can i tickle your belly. She said NO MY BELLY HURTS! Lets just say.. she was not into letting him touch her. He listened to her ticker finally after she gets to put the stethescope on her heart. Said it sounded good. A smidge different but nothing crazy! So yeah. Then we sit and have the talk. She is devloping on an amzing level. But unfortunately her brain HATES communicating to the rest of the body. Her highway gets blocked too much. lol. Your brain needs to send the message to the sa node so you can have a beating heart. So if you dont get that message then you dont get that. So he then discussed pacemakers. I have always known since she has been diagnosed that this might be an option for her. My husband and I have thouroughly discussed this also. He said we can do a trial and error. The hard part is kenadie has a rare disease that might not even have a true label for now. With all her bloodwork going ape nuts. So if it gets deemed mitocondrial then she can not get the pacemaker because then it would be a fight with the cells and the machine.One accomplishment we made today is the doctor agreed that kenadie is passing out from her hr going from 140bpm to 40. I know i am n ot crazy just wish people would listen.
If it is her immunodefiencey disease then we can get one. However she is not eligible unless it gets really bad or we can keep status quo until she turns 3. She can not get one right now because they will have to recrack her chest open put the drain tubes and all that stuff in. Her body can't handle that right now. When she turns 3 they can put it in through the artery. So we obviously would prefer that. We now have to do heart monitoring every 3 months for 1 month long. So we can make sure we dont have any deteriation going on that we dont know about.
So much relies on the bloodwork and the testing that is going to be performed in the next couple of weeks. There are some very hard decisions that will be made. I pray for the strength and the comfort and pray for my support system. Being a mother to a special needs child where there is not even 15 in the us like your child is so hard. I will try to type more tomorrow after the pedi.. I am just so tired and emotionally drained.

Well Crap!

I typed a blog post last week and somehow it was not on there. :( Guess my laptop was being a pissy little thing. ugh.
So in the past MONTH..ALOT has went on. Lets update on my other two princess before I update on the DIVA!
Genesis: She tested for early 1st grade entrance and missed it by 4 points. :( But her teacher said she is going to use her as a leader and will get some 1st grade material to keep her challenged. Her teacher is ms M. She sounds really nice. Then my daughter got attacked by a little boy at her learning center. One of the rare times I dont pick her up and her dad does this happens. He of course did not ask any questions so i blew up that phone to see what the heck happened. My daughter knows that momma will eat her lunch (figure of speech) if she misbehaves. So I asked and was told the little boy has a known anger problem and got mad at the teacher and proceeded to turn around and punch my child on the orbital bone. He was asked why and he said because she is white and a girl. WTF?!?!@?!?! Guess i should be glad I did not pick her up because knowing me and my mouth I would not have had it shut. I would have went off! This little boy is 2 yrs older than her too. Just gets me that they knew he had these tendencies and only suspended him for 1 day. They can not descriminate against medically challenged children. Okay. Wth.. He PUNCHED her! So needless to say I am not letting her go back there as she told the therapist that councels us for family counceling that she does not feel safe. Veiw it how ya want but she is not going back. One thing I can provide for her is that much. So yea. Tonight she lost her first 2 teeth! TWO! OMG my baby is growing right up on me! She has the total redneck missing teeth going on right now! lol. I should put her in overalls mess her hair up and pretend their was a tornado and take her picture! LOL!. So yep. Oh I also am enrolling her in soccer tomorrow. She is so excited to be playing. If you guys want to know how it goes I will post about it! :)
Alexus: She is going to be 4 in a couple weeks. I can't believe it is around the corner. She is so excited about her birthday this year. We have it marked on the calendar and everyday we mark another off. We are also moving her to a new center on thursday and I have never seen this child so excited! She is getting her afo's for her legs soon to help with her muscles. We are also done with therapy for her sensory issues. We are hoping to get recertified as it helped ALOT! She loves doing anything genesis does right now.
A side note about her birthday coming up. It is a bit emotional as I am having it at the same facitility where I announced to some people that i was pregnant with Angel Robert. The exact day is the same I found out too. Yes for those that are scratching their heads. I am a dates person. ;) Lately its really getting me too. I am not sure if it is because of all the stuff that we are going over in school or what. His loss date is coming soon too.. So i ususally go through a few boxes of kleenexs then. I love seeing my children playing outside and wish i could see him playing with them. I see other little boys with their daddy's at school where the girls go or just places and I try to keep it in check but some days nope. The girls just had their pictures done and I feel such an emptiness there. I know my family is not complete either. One of these days it will be. Just not right now! :)
My mom had a knee replacement done at the beginning of the month so I am missing a big huge part of my support system. She really means the world to me. My fil is awesome too but just not momma.. kwim.
Where to begin with kenadie?! Hmmm.. well I was going to post about her leg biopsy stuff. But lets jump to the big guns. Kenadie had some bw done 1 wk ago this past friday and we found out she has an immunodeficency disease. So for those wondering her immune system army is almost gone. Something in her body is eating it up and spitting it out. lol. On a serious note.. There is not a cure. Her heart knocks her out for alot of the treatments. We do more bw tomorrow to help us find out what else is going on with her.
Post will be continued.. gotta get kids to bed.

Hello! Warning.. lots of crazy ramblings! lol

Hello all. Its going to be a late night as I have plenty of studying to do and a paper over tuberculosis to write. I decided to do my blogging first since my mind is racing and blogging helps it clear out.
So.. A little update since my last blurb. I got yet another call from ohio that said mam I can't tell you the results but Dr. Kerr said he is synthesizing Kenadie's information and will get back with you in 6wks. But she does have some abnormalities. Okay first of all.. Why call me and tell me when I can't know this top secret info. I mean isn't that like dangling a steak in front of a homeless man and telling him he can he eat it just not right now! Lovely!! I know not all of her results are in so I know I need to be patient. I just want to know what is wrong with my daughter so I can get the best possible treatment I can for her. So yet another Ohio trip is coming this time we will aim not to get our stroller stolen!
Now K decided vomiting in her sleep is a good thing.I am definitely not the one that taught her that one! ;) lol. Her nurses are like WTH is going on with the diva?! Then she showed her nurse that a low pulse ox is beautiful. Per say 86 when her normal is 98. And throw in alot of brady spells! Ah.
Speaking of... this week is going to be a week. She has an appt with her cardiologist next Monday. But this Monday she has her pedi visit where we sit and chat a bout the diva's latest antics and how we really don't like people who annoy us in the medical field. Her pedi is nice he joins with me and dishes on his annoyances bc basically Dallas does not want to communicate with him and ohio well they are the snobby ones and wont call. So we have that lovely deal. Then I have exams after exams this week. Plus studying. Then we decided we are going to take a small family trip down to Dallas since I have to go anyways. Mom is going to meet me down there Sunday so Aaron can come back that night with the older two girls and come home. We never know how the cookie is going to crumble so I cant let them stay down there with me.
Now for me.. well.. it has been rather crazy trying to lead this one woman circus of school, doctors, and family. But I say in the end it shall fair out at least with school. I am having to do some sweeping out of high maintenance folks in my life. I can't afford to cater to their whims and when the cookie doesn't crumble their way all the time then i am f'd. Sorry I have way more things to do in my life. I still would like for my family to step up and help and care about what is going on with kenadie. But I can't make them. So if they want to be that way fantastic! Let them be. If they can't understand I cant be there for so and so's game, recital, or whatever because I have a special needs child who has issues that come whenever the wind flys by then tough cracker jacks. But you know I know we say no to 90% but inviting us does make us feel like part of the family and cared for. kwim. For me I grew up in a rather large close knit family. I would stay the night at my aunts n uncles houses with my cousins. My grandpa said we would throw a party when someone grew a new nail. Now sad to say I can't tell you when the last time I have heard from people. In my i guess demented mind I prayed that K's condition would bring my family closer together. Nope! far from it! That does hurt alot too. But again I am trying to let it be. Just hard.
Another thing I have to ramble about is people just having to tell me about crappy parents n how they dont take care of their children. I for one am sensitive about that. No I dont live in a dream world. I just don't like hearing it. I pray to god no one is in the situation we are but you would understand if you were. It hurts to hear the rambling and know they have this beautiful healthy child. Who does not deserve the treatment they are getting. It hurts knowing I have a son who I will never get to see and would give him all that I could just like I do for my girls. It hurts knowing I have a sister who would give the world to a child n has not been able to get pregnant or my friends that want a baby so badly it rules their lives! NO I dont want to hear it! And one of these days I hope to help a child who has that parent who can't take care of them. Yep.. we want to adopt a boy from the foster care system. One who can be loved beyond all means, have his sisters spoil him, and have him protect his sisters back. We dont care on the race.. just a healthy baby boy! And for those that have negative comments I am not hearing them. We will start this journey after I am almost done with school and after ms k gets her pacemaker. Gotta be able to chase her brother around. And yes when we do I will keep everyone posted. But we have made the final decision and we will be adding one more to our brood! Hmm think I will gain adoption weight?! ;) Can i use that for my mood swings also?! Okay.. done rambling tongiht.
Please know we appreciate all the support that is given. It keeps me going! :)

My heart gets torn out again!

Here we go. So I got a call from the PA today. She said mam I was calling to let you know that K biopsy came back normal. My heart just felt like someone took it out. Again left with no damn answers! ugh. Why I can't understand why we can't get something so basic to just show! You can't tell me why my child's head is burning up but not the rest of her body?! You can't tell me why her heart rate plummets?! Wth! I just dont understand at all. Why can't kenadie get a diagnosis. She deserves one! She has been vomitting for almost 1.5 wks now. And they can't tell me why. she passes out and they can't tell me why. I know sometimes we have to wait for some doc to die and then it will come to light. Well kick the can or give my answer before he kicks the can. How would you feel if you had to live wondering if the next episode is what might put her a vegetable or what might put her in a coffin. Yeah not pretty!Then someone says hey you might want to up your depressant so you can handle it better.

The diva decided no sleep for mom!

Hello all.. Sorry for the lack of updates on the diva. Days have flown so fast with school keeping me busy. 10 chapters + is quite a bit. Ms K decided tonight her heart rate was going to be 50. I dont play those games with her. I promptly plopped my hiney next to her bed with my laptop and here i remain. She is behaving. I try to leave the room and heart rate goes down. ugh.
So today was a very eventful day. We got up this morning. She decided to vomit three times in less than 5 minutes at a time.

Hello all. Another late night for me tonight. I have to wait on her night nurse especially since she thought 58 was good must a minute ago. Seriously. I am so over this mess. That is not even one beat per second. I am going to call her cardiac doc in the morning. We were going to talk about putting her on a drug till we get our pacemaker. I know they don't want her to till after the surgery but come on. She literally passed out today. Like went from standing to deer in headlights look. Scared me cause she hit her head on the way down.
Tomorrow I also start back to school. I am nervous. She has so much going on right now. I know I can do it. I am determined. I am so frustrated while I am typing k keeps beeping. Can't get her ticker to behave.

the date and place released.:)

soooo our tenantive date is June 30th admit and July 1 st for surgery. We have to check in Cleveland on the 29. They are calling Monday or Tuesday so I can get flights booked.

trying a post from my phone.:)

Hello. Forgive me for the errors. I am posting off my new phone. I am giving a try since I am always on my phone. Good thing they have unlimited plans.
Anywho. We still do not have an answer for the diva. I can pray that since Dr Brennan will be back then we will get answers. Today I noticed her tummy was really distended after she vomited. Their was a bulge on her left side. So we need to go see Brennan tomorrow anyways.
I just hope Dr k stops being an Asshat. He is in Ohio and refusing to do what we need. He does not have to live with her. Just so freaking frustrating. My baby is suffering bc of their tug of war. Ugh.
Anyone with advice I am open to it.

Where are we going?!?!

That's the million dollar question of the night. I was hoping we would have an answer and we dont just more questions now! ugh. Ohio called dr m said i want her to see dr x before we go in surgery. ME: WHY? what is the reasoning? Dr M: Just to see if we meet eye to eye on this then plan your surgery. Me: Oh hell no! So dr m says they will call me back later. Btw they were supposed to call me back when we left ohio to let me know all the details of appointments. No they have to be terds. Literally talk to their staff and you will spewing venom. So the nurse that was supposed to come out or whatever. Never called or anything. So I was the lone stranger. Then I called arkansas childrens hospital. I said i am calling from ok for dr b's office and trying to find out if you do this procedure. One min.. cheif of surgery. Yes mam we do. ME when can you get her? Next week. ugh.. Please let this come through. She needs it bad!
I Call the neuro doc and she is just as frazzled bc the sect in ohio was terribly rude to her. Does not surprise me! But alas lets remember why we are doing this. For ms K! So tomorrow ms L from dr b office is calling ohio to bug them! She said I will have an answer for you TOMORROW! She said i dont have pt's till noon so they will hear from me every 30 mins! She is serious too! So say some prayers that we can get her what she needs.
Btw we took older girls with papa and watched shrek 4. they loved it! I got me a new car bc mine was totaled. Then btw my roof has a leak thanks to the freaking hail. We are hoping to do a car wash in august for ms k..and hopefully get our t-shirt sales going this coming month.

A plan for a few things.

So as i am trying to gather my mind to put it to rest i was like oh go blog! So I have to tell you about alexus at the dealership today. She is potty training and no potty was available as they are closed on sundays.. She went pee by a tree. She said mom I peed like a dog does. Omg rofl. It was hilarious!
So my update is that I have passed most of my finals. I find out on wednesday for sure. I start back on the 14th of June. I am excited to keep going. Due to the lovely hail storm my van got totaled so that is why i am looking for a car. I think I found one.
Friday k went to the doc. I wanted to yell, scream, and cry. And you know what?! I did all 3 and the doc just said mom you do it! So kenadie's disease is irreversable. Her labs came back poopy again. Ohio said they wont do her test until we get all the money together. Which is poop! So we dont have time like that on our hands. So tuesday I will be using my unlimited cell phone minutes calling a bunch of hospitals. We also will have to know approximate dates. Her pedi will put her in the hospital to get our surgery asap! Our home health is going to send an office person to my house to help me call! Hopefully we will be in the hospital fast! If you can help with any donations for our flights or anything please let me know. We will be there about a week. So anything can help!
Also I need some advice. First I want to ask all my readers a question... What is family to you? What do expect from your family in a crisis of such?
Okay so my advice part.. I have a person in our lives who is in denial about kenadie. And everything seems to be about that person. Why dont I tell them xyz but when i do I cant handle xyz. What do you do about them?! I would love to go deep in this but i have more than enough to deal with but deal with more drama. I honestly dont know what to do. My dh says forget it and dont bother with it. My brain says fix it with my fists and/or mouth. But my heart says alot.. and it really hurts. When i grew up. I stayed the night with my aunts and uncles. I always seen my family. I would like to think we were somewhat close. Now.. ha! So i just want that for my children. I have some people like ab who stays in contact with us. I feel like if i need to i can call anytime. Then my supportive people. But really those who could just pitch in an hr once a month or something. We are not asking you for your life or something. God forbid anyone finds them in our situation. I pray it never happens. so advice on how to handle tis please.
so this week.. be on the look out where we will be going to for surgery. it will be release on the blog first! :)

Link for the first fundraiser!

MS. ERIKA HAS SAID SHE WILL DONATE ALL PROCEEDS FROM SALES TO MS KENADIE!
LINK:CraftyRika.blogspot.com

come on and lets help the diva!

I can't sleep!

so lovely lady decided to throw some irregular beats tonight. Her nurse is finally here but i still can't sleep. So i thought i would share this link about mitocondrial disorder which is what they are suspecting she has. Blood work is lining up with it. http://my.clevelandclinic.org/disorders/mitochondrial_disease/hic_mitochondrial_disease.aspx
Okay so we talked to cardiology this morning 2x's. First time i was told maybe your tired and over thinking it and she wont die so she is good. The second time it was a total different story. He called and got her 30 day monitor from her okc tracing and it show quite a few bradys and tachys. So now we need to catch a good episode again bc the one transmission i sent did not go through. Then we will talk about it in clinic in july. They could possibly admit tomorrow depending what her pedi says.
i just dont know what to think. I broke down after talking to her cardi after the 2nd time. I dont know what to do or think or say. My heart feels broke for her. I am so scared something will happen to her. I am trying my best to make sure she stays healthy.

Craziness going on with the Diva!

Lord only knows what to say about the diva. I am full of emotions as i sit here in her room and her hr is 70. Okay so I will start whre I left off. Kenadie had arrived in dallas on Tuesday. Had a blast playing with the kiddos down there. Then check in at 6am. Let me tell you I hate seeing 5am esp when i have to explain dysautonomia to 10 different residents that think my child must be a circus. How much should I start changing for admission?! So then we met with the anastetic doc came in and said btw kenadie has a minor heart block. umm SAY WHAT?! We were not called by our cardiologist. So we just said okay and kept going on. She was cleared for the procedure though. So she has it done then they spring it on me that she has to be npo the rest of the day along with strict beddrest and no they are not giving a sedative! WTH are we in cruelty punishment now?!This is total bull shit! She is an active 19mo and she loves to play. But she was a great trooper and as long as momma laid in bed so did she. She had one heart spell fornanna with a nurse who did not understand the disease so that is always a journey. Nanna did great. So we come home and I take k to the doc on friday for a regular check up after we get back. He has to see her make sure she is in tact i guess. Thank god we like him! He is the one that explained the 1st degree heart block to me. Then I got some labs in the MAIL! Yes you read that right.. The mail! Her protien, liver, and pancreas are off. So I took them up today and he just happen to hear me talking and came out to talk to us. He said I think it is mitocondrial disease. Not the most common type either. Well knock me while i am down. He stated he wants us in cleveland right now. Hello I dont have a dime yet for this trip. But we will do whatever. I will put my house up to ensure my daughter gets a good quality of life. So they will call us this week to tell us what to do next. Friday night kenadie had a 6 minute non responsive to stimuli spell for her nurse. Then I am in her room right now bc she gave her nurse a few of them tonight. I am so stressed. I have 6 more finals to do and this. I dont know how to do it all. I am scared I am going to lose my daughter. I really need our family of friends and peoples right now. Until we get some clarity. She is an amazing little girl. She is strong. I know we can get through all of this!
Btw our little buddy might get to go home this week. Maryn. She needs to get in playing shape! ;)
Also i would like you to keep ridge in your prayers. He is a handsome baby that we met in the hospital some time back. His momma is an awesome one and deals with his stuff great. I should take lessons! ;) He has a RARE bleeding disorder in his intestines. Gets lots of blood. Please pray for no bleeding so they can be at home and for God to heal his bleeds!

About to head south again! Hoping to head north too!

Yep just what the title read. However the North part is.. We are hoping Kenadie's friend Maryn can get well enough we can come visit her! She lives in Nebraska! Please pray for her! We want to come up! :)
Okay.. on to business. So first off.. the older siblings. Genesis is having some jealousy issues. She rarely has shown any but now she is and BAD! She is making up for the few years she did not! lol. So daddy and I took her to get her hair done, shopping, and let her pick her resteraunt. We are going to try and do their day once a month with just mommy and daddy time. She said i had so much fun. Just depends on how the funds are looking. :) We are also going to have her councelor start helping in that area too.
Ms alexus is on her second set of castings. Btw for those that wonder what they are for. It is to slowly stretch the muscle. Her heel cords (muscle in the heel) are so tight she has no range of motion and they are stiff.. Think a really stiff neck! OUCH! So we are hoping this solves part of the problem. She will wear splints for a couple years after this. We are hoping to avoid the knife. She also has an mri and cat scan coming of the brain, neck, and spine to try and determine her muscle issues out. We pray with an answer that we can handle! Her sensory issues are touchy. One day we have a good one the next well you just pray the next day is better. Again our councelor is working with her therapist to see if we can get this to help her more. We have seen a slight improvement. As for the asthma holy crapshoots! It is killin us! She is having her breathing tx about every 4hrs or so. Pulmicort and xopenex. They are adding an allergy med this week to see if it will help!
Now for Kenadie.... where to start on my lovely. Since my last brief post the lady bug has gotten gastroenteritis yet again. Still has some left over because her body prossess things very slowly! Everytime she eats she poops much like a newborn. We also have some malabsorption going on so that is not making things pretty either. Although let me tell you the best butt paste stuff.. It is called the poop goo. Its a combo of meds mixed and its AWESOME! Thanks to dr b for that one! Speaking of our pediatrician that we have now is amazing! We absolutely love him. Now he is very forward and tells you how the cow NEEDS to eat the cabbage but he is awesome to his pt's. He called the other night just to tell me he was thinking of kenadie and needed an update on her gastro stuff. Just the compassion is awesome. He reminds me everytime we see him that she is "NORMAL" in his office! It feels so nice not to feel like a burden when i call with questions! He takes them seriously too! So yeah. He was trying to get our muscle biopsy done while we were in the big d. I had my hopes up wich was my first huge mistake. He called today and left a message that ohio said she HAS to see their genetic endocrine doc then have the biopsy done there bc they have a special protocol they have to go by. Only center in the u.s. that is doing this. Well STINKY POO! If i may be honest i was upset! I figured she was going to be out might as well get it all done so i dont have to watch her suffer again and again. The test we are about to endure is cruel to me. She has to lay down for 8hrs straight! yes straight! umm i think they lost their minds! No sedatives bc it can affect the test. But we are asking about other options. We have done this one before and it wasn't pretty!
Btw i have finals next week.. An extra prayer would be nice for me. I have got to pass my anp class. The rest i am doing okay in.

An update from cleveland and more!

Before we start this post off.. please get your fundraising minds out..this mom needs your help! Okay to start with this. Kenadie's private insurance coverage was lost due her pediatrician not being able to see her. We finally found one we love and weren't using her private coverage only when we were traveling and so we had to make the choice. Dropping it. Now here comes the fundraising part. To see the docs we have to pay 200.00 out of pocket each time plus airfare! Mind you Kenadie's dysautonomia is rare so we can only see 1 group of md's in cleveland ohio. They dont take oklahoma medicaid either. So i dont know what we are going to do.
So speaking of cleveland. We seen the doctor on thursday. He was baffled as to what is going on. We are progressing in some areas with our dysautonomia symptoms (which you dont want to be). So he is really pushing for a muscle biopsy. He wants a live biopsy which is rarely done i guess. So he wants her to see this special gene doc then have the biopsy done while she is there in cleveland hopefully. Then wants to start her on a vitamin and amnio acid treatment to see if we can help the symptoms stay where they are and not progress. I have to say I am a bit scared when it comes to this.

clinic update and some ramblings

ello everyone. What a week it has been. So clinic on monday was eventful. Turns out no one has been communicating with our cardiologist in texas. I love when they say oh yeah i will send them a letter and it never gets done. erhh. So we had a sedated echo and she did not react well to the sedation. Passing out, thrashing, vomitting, and just body crazyness. We know she can't handle that sedation anymore. Tuesday we went to gi and well he was just irritating. One minute he is like i want the tube out the next he doesnt. Then ended the appt with no. On the way home we all were tired so it was a very long trip. Now we go to cleveland where i pray we get an answer. So I can shut her gi up! He kept saying well if they have anything to offer which they wont. Damn dont dash my hopes! Then says well you never mentioned her heart issues before. Um hello what system are you again?! GI!!!
So yeah. I am not banking my 10 cents that i have in my bank account on getting one though. I am just getting wore out on everything. For 18 months now we have battled. I want to say I am done. But when can you say that?! When is enough enough? Sometimes I want to kick the nurses out of my house, tell the docs we will see them at checkups only as if she was a normal child, and say to hell with it. But I know she has issues. She shows her little kester and lets me know mom.. I need my nurse. Per say her temp was 96.3 a bit ago. Her nurse is pretty new to our case so she gets in a frenzy each time we have a low or a high. Kinda funny.. But she will calm down soon.
If you can't tell I am struggling personally. I think this whole control freak is starting to kick my butt. I have always been that control freak. Since my mom had her stroke and I became boss! :) Learning that some things I can't help or alter gets to me. I am a planner by all means. Kenadie is slowly teaching me mom after 26yrs you have to change. Like it or not! Trust me it is going out kicking and screaming all the way!
Then I dont know how to handle my family. I would love for them to be more supportive. Come see her, call, email, and do whatever. We can corral around people when they have their issues. I have had an issue i need family support for 18mths now. I dont know if they are scared or what but trust me you WONT catch anything. Its genetic with her my friends.
I also think I am slowly building anger against some of those issues too. I have an i dont care attitude right now with certain things. Like since they weren't their for me tough shit type of thing. Just gets me!
Btw we are going to try and get the diva in swim classes. I can't wait. Genesis will be going to big girl swim lessons and so will alexus. :)

Ah speaking of ms alexus.. we went to her ortho appt on wednesday morning and well crap. Her physical therapist said she needed serial casting for her legs with botox injections. The dr said he wants an mri bc of the muscle tightness patterns. He also wants her back in the neuros office. So we go on monday there. I am nervous as to what he might have to say. Right now she has sensory disorder. We can't get the diagnosis for autism till we see the proper drs and get the dx but that is what the ptis leaning to.. I try not to think about this. But when she is so ridgid it is unbearable to almost live with her.. Its so hard. I want to just go cry. I am a good mother but somedays she just makes me feel like I do a crap job. And the next person that says it is bc i am gone too much I will kick them in their shins or accidentaly pour my cappy coffee on them! Its not all me! She has always been this way! Yes we do family therapy, individual counceling, and all that jazz. We do everything we can for her too! Some days I just feel inadequate.


Another thing.. My angel son's 2nd heavenly birthday will be on tuesday. And it just sucks right now. The pain does get better but you know.. Nothing will replace the son I lost! I miss him so much. I often wonder what he would be doing right now. Would he be going into his terrible two's? Would he be clingy with mommy or daddy? Would he be special needs? The list goes on. So on tuesday we will be celebrating his birthday in our own fashion. I will need some kleenex though.

Good morning.... Angel thoughts.

Morning. Just a quick post before class starts. I am really missing my angel this morning. I look at kenadie and see what she does. She is a loving child with such spirit. I wonder what he would be doing now. Angel will be 2yro on may 4th. Would he be having his temper tantrums? Always wanting mom or would he be a daddy's boy? Sunday is easter. I would have gotten him a nice easter outfit. They have some really cute ones. Last night I had one of those nights where I just thought about my baby.

What a few days it has been!

So, the weekend went by with a few hesitations it was good. Kenadie decided to show her ms d that she can show off still. Causing a good desat with her oxygen. Ms D told her lets act like a lady and keep those antics to herself. ;) lol. A few times gagging and one or two times trying to vomit but overall she has behaved. I am learning that when her tummy is starting to look like she's had a keg its time to cut off the food for a few hours and give those intestines a chance to do their job.. as lazy as they are at it though.
I called monday to talk to dr s in texas. I got our favorite nurse ms t. She is so sweet god bless her one day please! :) She listened and talked back but she loves ms k like her own grandbaby she said well we will just have to tell dr s what is going on with the love bug. I also told her how mean the resident was on the phone to us when she was having her enemsis issues. That it turned out to be an obstruction. Love it when the resident told me she could not poop if she had an obstruction. Ha she proved you wrong! Anyhow. She told me dr S would be calling me back in a day or two. Here i sit on Wednesday and we have not had a phone call. hmmph! We go back down south april 26 for kenadie's cardiac clearance for her gi study. So i know we will see him then. We are the only one who he lets just drop in clinic. :) Anytime we are in town he said YOU BETTER COME BY CLINIC SO I CAN LAY EYES ON HER DO YOU UNDERSTAND ME?! yes he was loud about it too! Unique guy. I just dont want to wait till then.
So today... one of kenadie's nurses who we liked site on sceen quit. No notice no nothing. Just called the agency and quit. I knew it was too good to be true to have a weekend nurse who we actually meshed with. She was so good with kenadie too. We were her first ambulatory case (mobile not bed bound). So needless to say I am irritated.
On a personal note. I got my class completed that I needed to complete. Finally. I handed in my papers and asked when my grade would be available. He said all you need to know is you passed! HECK FREAKING YA! Then he is the same professor that i have for college algebra. So he knows my situation and all that yummy stuff. I took one quiz today and got an 80% on that without cracking a book or stepping in his class. So yay me! Also if the stars line up.. I might get to have a night out with my husband alone. Our family friend sheshe is going to come watch k and her sisters for me. So we might go to a bnb. Not sure yet. We had one great experience at one in texas and would love to go back again. I just know we need 1 night together.. Have not done that in too long.

What a month this has been!

So far the month of march has been hospital month for us. Kenadie was admitted to the hospital on March 6. She had gotten a stomach bug, when we took her to the er her numbers were crazy and the liver decided to throw a tantrum. So we stayed got fluids. On the 7th I proceeded to get sick in her room. Vomitted my little self up. Thank god for a script left from my hysterectomy to get me through the vomitting. The nurse was so sweet that night. He helped me alot. Ms sheshe (a close family friend) came up and saved my day too. She let me vomit and die in misery! lol. K did well but she would not tolerate her feeds for a few days. We lost many iv's and had many blood draws. The count came to about 21. She got discharged on friday afternoon about 6pm and we went home visited some family and went to bed. Saturday morning she woke up. Pale and tummy looked rather big. I knew that things weren't going to go well. We still went on with our day. Then at 7pm my husband calls me to say that she is vomitting. Crap! So I come home tell nurse C that to watch her if she vomits again we will go back. She vomitted again so we went back. They said she is not going anywhere. This time we had a full obstruction in her jajunem (sp?). So we weren't going anywhere fast. They called dallas to see what our gi wanted to do. Since ours was not on service it was a tossup of who would take care of us. Dr S wanted her down there but i have a feeling that Dr Salesman made his pitch so we could stay. We had to wait it out. It was not fun at all for kenadie. She loves to eat! So if you had something you had to leave her room. Dont even bring a drink in. It was not fair to her. We got moved to a big room and enjoyed our little "home". Well as much as you can. You learn to do what you have to do to make the best of it.

We made some special friends up on the ward. She has a rare child also. His name is Rich. Please keep him in your prayers that God will heal him or not let his intestines bleed for a very long time! He goes through quite a bit of blood! So donate people please! :) When you make a connection in the hospital you almost feel normal. Like your child is fine. They know the challenges that you face.

There was another situation that was brought up to me while in the hospital. My family member not dealing with kenadie's issues. Please know I wont do just peaches and cream news. I can't. I dont get it that way. It hurts that some can't accept her for what is going on. I may be wording it wrong as accepting but I know that they dont like to acknowledge what is going on. I have to face the music 24/7/365. Deal with the naysayers coughs her old pediatrician.. WHERE IS SHE NOW!!!!!!!! Sorry had to get that out. Then my 3yro alexus does not want to be at my house at all. She says its not my house she thinks granddads is her house. Its where she feel stability at. Genesis likes to be with us but come night time she doesn't. She wants to sleep somewhere else where she feels like wont change. Where are they when all of this is going on? OR just ask.. how are you guys doing?! Personally i thought family banded together when the rough times start going. Am i wrong for thinking that?!

On a personal note I passed 2/3 classes and completeing the other one this weekend. I am now in clinical labs, doing a&p, and college algebra. Most of my professors are very understanding and have taken a personal interest in kenadie. I just pray I can do this and I dont get taken off the right track!

Trying to go back to blogging again!

I am going back to blogging again. I decided to change my url back to the same. I am not going to let some drama sway me from MY journal of how I feel. It is MY blog. My time to vent my feelers. Please know when i type. I am not thinking of who might get offended or what not. I am typing my feelings. I am going to try and keep some names anonymous due to some family possibly reading it. But other than that. My mother can attest I am a straightshooter and if I dont like something I will make it be known. My blog is going to talk about my children (living and my angels), marriage after having a special needs child, life, death, family issues, anger, and medical stuff with my daughther. Please know i have a sailor mouth. Far from clean. lol. But I am working on getting it better.

Now if you have any questions please email me at hancock _ alisha @ hotmail . com (without the spaces).

A good vent! (an interesting event lead to this vent..cps was a while ago though)

Hello all. I was going to come on here and rant and vent. But I am not sure where it would have gotten me. I have let my anger get the best of me. When i found out that cps was called on my house. I got livid and could on see fire. Like how and why could someone do such a thing to me. I love my children and try to give them the best. I took my anger out on some people that maybe I should not have and took any comment they made whether it was towards me or not offensive just so i could be angry and try to hurt them like i was hurting. In some aspects though I have to say you can only put up with some people bitchiness and attitudes for so long. And you try going in that office 2x's a month or more and deal with a bitchy staff. I might have been the cause for that bitchiness. But really if you can't hack it. Give it a rest. I can not help that you can't see kenadie's symptoms all the time and that it is not a prevelant thing at all moments and that she does not have a stamped diagnosis such as syndrome or whatever. But what I can say is that yes person x you did make a comment one day when i was on the phone with my mom. Maybe i misinterpreted it but i know one thing. I cant stand Joker faces! And I just found out there is a couple that I have been dealing with for a while. That is sad.. just plain sad. Hey if you are going to have a position on a certain important issue dont go to person x and be all down and then go to me and be chimey.. just not fucking right. Also.. let me be the first to tell you. I HAVE A POTTY MOUTH! Yes I know. Not a good thing for you to do and not a good thing for children to hear. But if i am typing it i am not saying it. So Yes I cuss like a sailor and if it offends any.. well sorry.