Sitting and thinking

My mind is running a million miles an hour tonight. I have all the kids down to bed so I am left with quiet time. Alot has happened in the past 5 months. We have had a few deaths in the family. Russ's brother, a great aunt, and my dad (4/13/13). This has been a huge blow here. My dad was my world along with my mom. I am very close with my parents and grandparents. It was a huge blow to the diva also. Before my dad passed which was very unexpected we decided it is time We have kenadie's DNR on file with the hospital. She is to a point where anything can happen and this momma has to be prepared. She continues to have blood pressure highs and lows. She relys more on her pacemaker than one feels comfortable with at times. We also went to see our heart dr in march. Which might I add irked my sister off while we are there. She lives in NC. So we stayed with her and she went with us to the appointments. :) So that appointment didn't boad to well with us. As he didn't listen to what we had to say about our diva. Then referred us to the immunology dept who didn't have much to say other than we waited for a NP to come in and tell me we needed to stay another few days for bloodwork. Which was a waste of time. We opted not to. After our heart visit we got the clearance to go on our MAKE a WISH. I wish I would have blogged during it like i had planned.So we got home from our heart venture around march 13thish. Don't quote me. Then daddy gets ill goes to the ER and admitted and he passes in the hospital. Very unexpected. Then the following week we go to MAW. We all needed the wish. I can't thank MAW enough for that blessing that my family was given. It truly brought some peace. It also made my little diva feel normal if only for a week. The day we arrived she was upset about being special. The day we left she said mommy I don't mind it. I am like these kids. Every child she seen with a feeding tube made her excited because she had a belly button just like them. I bawled my eyes out numerous times. I definitely should have brought lots of kleenex with me. Then she got her wish and that was meeting Cinderella. The look on her face just made it all. the excitement and thrill was amazing. I got our photopass in the mail today. So there will be a slideshow coming soon. She seen Cinderella pictures today and went bananas. I tried to keep my facebook up to date when we went. Her page is Campaign Kenadie and mine is Alisha Hancock-Brown. So the diva now. She is still so up and down. I thank God her pediatrician deals with my wig outs. Her blood pressure never likes to cooperate. She passed out in the resteraunt two weeks ago. People just made harsh comments. I try to allow her to live a normal life but its hard. I want to put her in a little bubble. Protect her from what is not right or bad in the world whether that is germs or people. She is such a caring and loving child. Beautiful spirit. I can't wait to upload some of the disney trip now! Well bed is calling. I will try and blog more and not every 6 months.

It's certainly a Monday!

Well it's certainly a Monday! Our day started off with a lovely page on my pager at 0700. For those that do not know I am a cancer research nurse. Long explanation to it. I am specifically over breast cancer. Then the little diva needed a scan on her tummy today. They were looking at the gallbladder, liver, spleen, kidneys, and bladder. I for one get paranoid when they spend way too much time on one certain organ. From previous experience that is NOT good. So now we sit and wait. Her blood work came back and still have a craptastic level on her D counts. From there the kids got to go to work with momma for all over 30 mins. Kenadie assures me she wants to a nurse doctor. lol. Alexus said my job is gross and she wants to be a teacher. Well hmmph. From there it was one mini crisis after another with my patients. I give them my heart. I am a very passionate nurse. After work I picked up the lil ones. Then got greeted with the news that a dear friend of the family her dad has passed unexpectedly. 2013 has not been the year for us thus far. It is scaring the crapola out of me. So far just this year: my husband's brother, grandpa's brother, and now our friend's dad. Just not ok. Please keep them in your prayers. They are going to need it as her mother is fighting met breast cancer. So my emotional part of the day is I occasionally catch myself thinking I am not enough. Like today I took kenadie to the hospital for her scan and then felt like my patients were shorted bc I couldn't be there. I am the only one right now that could take her due to ailments going on. It's just my mom and I that take her to appts. Her dad does not feel ok to do such things and as the years have went by it's ok. I am fine with it. But bc I try and tackle the world I end up feeling like I am not enough. Like someone is getting shorted somewhere. Sigh. I am hoping it is just a monday. I will take a nap and hopefully wake up refreshed. Btw the results should be in by Friday. Well off to get school clothes ready then to snuggle warmly in bed.

New year with new goals and lots to talk about!

Hello. I am going to forewarn that I have lots to chat about. First off happy new year to everyone! It's a new year, so i look at that as a new beginning. Looking back at 2012 it was one heck of a heck. Russ moved in, we got married, kenadie had major surgery, she got approved for MAKE A WISH,and his brother passed. So going with the new year thing. I have some goals. I need to blog more just for more sanity to get it out. I am going to start kenadie a caringbridge page up. So those who just want to follow updates on her can. Plus MAKE A WISH recommends it as they like to stay in contact with their kids. Which is fine. Another one of my goals is to coupon more this year. Use wal-mart less. I don't like how they treat their employees for the most part. Not saying I won't shop there but I hear all too often how they are mistreated. Another goal of mine is to get healthier. Not just weight wise. But I have some medical issues of my own that are concerning and need to get them inline. I would love to come off some medication. I want to be a healthy momma for my kids. Then my last goal is I want to work on getting Campaign Kenadie more off the ground and going. I would like to help not only kenadie but other RARE children out there. So..Kenadie got approved for MAKE A WISH. For those that don't know what that is please check out makeawish.org it will. It is for children with life threatening illnesses. Kenadie has the odds very well stacked against her. She had her major surgery in Novemeber and we have seen quite the increase in autonomic disruption with her system. Where she just plays and her hr goes to 200bpm. That's not supposed to happen. She had to sit down in the grocery store today bc her heart was in her words "being a pain in the head". cuBut anyways. Kenadie's wish with her coordinators is to meet Cinderella. She can't wait. I would like to get her the stuff to do her room in cinderella theme when we can get the funds. So we have a few more steps to complete with MAW and then they will tell us our date. My feelings on this. In one way i am so flipping thankful and grateful and all those things. In another I sit down and go Lord why kenadie. Bc you know you have to meet their guidelines to be able to go. When people find out we are going they say a multitude of things: "oh lucky you, you get a free disney trip!" " how did you score that" and the list goes on. Let me say this. I would LOVE to have a healthy daughter and never go to disney in my life if that means she is healthy. But that's not the case and these people are helping her wish come true. Another thing. Kenadie would love to meet justin beiber. She can't go to a concert due to the noise volume. it would throw her in the hospital. But she loves his music. I have a video of her singing to his music. So in novemeber kenadie had a raux and y done with her intestines with a jujenostomy pouch. She has had a very rocky road recovering from this surgery. Our numbers keep bouncing. We have no clue. Kenadie's liver looked a little hazy prior to surgery also. thankfully those numbers are not all that wacky. her vitamin d is almost depleted. calcium is low and a few others. She still remains on IGG every 3 weeks via her port. if you ever have a question regarding kenadie please send me an email at hancock_alisha@hotmail.com subject title KENADIE. Tomorrow kenadie gets her liver, gallbladder, and kidney's scanned. She passed a kidney stone in october. So we have to follow up on those things. Genesis is doing well in school. Growing like all get out. She is still adjusting to the divorce and our unusal arrangements we have with that. Alexus is still my sprited child. Loves most things as long as they are kind to her. We are fighting the battle at school to get her help with learning disorder. That has been one heck of a rollercoaster. Well off to bed i go. Hope everyone has a blessed week.

the diva made it to 4 and the double k's!

Hello..We made it to 4 years old! What a journey it has been. Kenadie was so excited about her birthday yesterday. She had issues falling asleep the night before. It was so awesome to see her so excited. When i talked to her on the phone the morning of her birthday as it was her dad's weekend to have them she said mom it has tough getting here but I made it. She is so right. It has. Many times they have wanted to throw the towel in. I refuse to give up on her. I never did and she is such a happy little girl. I have been blessed to have some amazing people support us. She has had some wonderful care givers along the way. Many times I thought I would lose my mind and those people would listen. I remember when she was in the hospital feeding and growing to have heart surgery. My aunt stayed by her side a good part of the time. She listened to me ramble and allowed me to sleep. Looking back that was huge. Still our family and friends continue to stay by our sides. Yesterday as I looked at her I would break into tears. The gift the good lord give me. Just really amazing. Time on earth with her is no where near for granted. But we enjoy everyday and try to treat her like a normal child. Yesterday was no exception. She went to the pumpkin patch for some fun times. She went on a hayride, picked out a pumpkin, went to their petting zoo, and rode a pony. The grins and happiness from her were radiating.

This is the double k's. My cousin son and kenadie were born a few days within each other. It is awesome to watch them grow up. I have posted many times in the past with the both of them. He is such a sweet little guy! I can't thank our supporters enough for the support. It's so hard but it makes it a bit easier with those. Kenadie is angel here on earth. I continue to think that God has a purpose for her here.

Update on us.

Hello. So much again has happened since the north carolina trip. We came home from there and kenadie was put in the hospital for salmonella. Then got over that and btw we have never really figured out how this kid got it. But yep. Then the NC clinic has still not followed up on Kenadie for her immunology. Which reminds me I have to call and hound them again. So far she is doing pretty good. Pretty baseline for her. We have good days and really bad days. She has days where she just wants to lay around. But who doesn't.

An update on me and our life.

Hello. We are living. So that's the good part. Russ and i had our union on June 23rd. It was beautiful. Small..we missed having those that could not make it.
We are trying to out together a party a housewarming/oklahoma reception type of thing. We shall see. We are all still settling in our rolls. Adjustments. The kids are doing pretty good with it. Russ is a wonderful bonus male role model for them..their dad does a good job too.
Speaking of we had alexus birthday dinner and it went great. I am glad their dad n i have a relationship to where we can do things together still. Coparenting is much easier too. :)
So genesis had her parent teacher conference and it went great. Alexus has some things we need to work on as she has a learning disability, they don't want to give her help until 1st grade which is so irritating. Other than that they are doing great. We also downloaded some learning apps for alexus tablet she got..i am loving that thing.
Kenadie is doing good. She has her moments..moments when her muscles give out, moments she pours sweat when doing nothing. Her most scary incident lately is the blood in urine. She had to go to er. She was dehydrated. :( her liver came back streaked on a test and her kidney was questionable so we are having to keep a very close eye on her. We go to Ohio in october and hopefully they will have answers.
She is so fiesty. Loves to run, jump, do whatever her body allows her to do and then some.
We did another first. We took them to the fair. She rode the Farris wheel and loved it. I love watching her face light up. 

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a first for the diva.

i wrote this post i dont know where it went. i am guessing hyperspace. hmm.

so while we were in north carolina kenadie went to the ocean. my inner self was freaking out so bad. the bacteria, the sand, the rocks, how will she react?! well i calmed myself down and just said go with it. so we get there we all go out to the ocean water. she loves it. she didnt care two winks about the sand on her feet or the rocks. she absolutely loved it and bonded with her godpapi as she calls him and ms leah her buddy. they were two peas in a pod. mostly at the ocean though she had godpapi runnimg back and forth from the ocean. when we told her it was time to go she was so upset. mom i love the beach and feel free. i bet kid. she did get her first kiss of sun.

as i seen her enjoying these moments i cherished  them all. one thing kenadie has taught me is you dont know when the next time you will have them if ever. i cherish  everything my kids do now. i am a total different mom. i am the mom that crys at first. i hid my tears of joy at the ocean until i went to bed. i cried hard. just seeing my baby so happy especially as much as she has going on.

i also got the opportunity to bond more with Cameron (godpapi) and his awesome wife leah. cameron is my cousin who is enlisted in the marines and stationed at camp lejune. he came the day k went flatline at duke. she was in his arms drawing. ever since they have had a great bond. he was there for her check up after pm didnt leave her side. he got back from deployment before this round of check up and was there every moment.

her dr appt was so frustrating as the dr was mad he was not kept in the loop. so they did some bw and it came back craptastic. then referred us to the leader in immunology in the US. we wait for her to accept her. then go from there.i am somewhat against it. like why bother. her immuno has a baseline going. yes its so dangerous in the position that we are in. first good infection and we are out of the fight. but her poor body has been through so much.

so we wait to hear what is going on.

after clinic we hunted down some food had a great drink and they took her shopping..they had a blast. then after her halter was taken off she went swimming and loved that too.

she keeps saying mom i miss godpapi and Leah. i cant wait to go to the beach again. i cant either. she was so happy careless and free.

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