to my son angel Robert

Happy early birthday baby. I hope you have a great one with your grammie n granny.
Momma misses you so much. My heart aches everyday for you. Time does help. But I still miss you more than life itself.
I see what your sisters are doing and wonder what would you be doing. Would you be getting ready for pre school and having daddy teach you those crazy boy things. Would you be momma boy? Would you be like your sister n have her disease? Would you have been healthy as a horse like your dad?
I grieve never hearing mommy I love you. Or even momma your mean. Lol. I love you more than you can imagine. Please keep watching over your sister n keep her safe. She has a long fight in her journey. I don't want her to join you anytime in the near future. I am scared that one day she will and I know you will be there. Still let momma keep her till I grow old.;)
Mommy loves you. Happy birthday baby. Your a big 3!

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I have got to remember to blog this so i can tell her when she's a teen!

So today we were in the car. K is having a horrid day with her disease. Stupid TAD! So Genesis says " mom it's not fair K gets to have her meds in her tube she doesn't have to taste how gross they are." Me: I am sorry dear. She has to have a tube bc she is sick and has a disease. G: Well mom I want one. Me: Um nope. You dont want the surgeon to cut a hole in your belly do you and put it in? G: the surgeon put it there?! me: um yes how do you think she got it? G: Mom, Dad told me God gave her one when she was born like you know when she was in your belly she had one! And mom I still remember when she had a spaghetti noodle down her nose! Me: (desparately trying not to laugh!) Um hun that was not a spaghetti noodle. that was a feeding tube too. And the surgeon put it in her tummy babe. A few minutes of thought passed then g said : mom i have changed my mind i want to keep my tummy holeless. me: okay good. Ah. what a good chat.
But it got me thinking. As far as she is concerned her baby came home with these things and at her young age. Yeah she probably thought god put it there in my tummy. But you must admit the mental image is hilarious!
She is definitely starting to comprehend more and asks alot of questions and alot of whys. Why did her baby have to be born with a holy heart, and why did her baby have to have a tube, and mom why do you always have to be at the hospital. Now I must say those get hard. I try to explain that God made her special and her body needs some help from the doctors but you know she just wants her family at home more. Or at least that is what she told someone at school. I will never forget when we stayed at baylor for a month and they stayed here she told this little girl that her mommy lives in texas and her daddy lives in Oklahoma and they see each other on the weekends. That broke me down but made me look at it in her perspective. At these times i feel so inadequate. Like I can't be a good enough mother. But then again. A normal mom has issues juggling time and lord knows when you have a child with special needs you cater to that disease! Alexus recently told me she wanted to go back and live with her granddad. I asked her why. She said mom you know its hard living with kenadie. I said why hun she says mom she is always sick. I know hun. Then she reminded me of how much her granddad means to her and you know what i used to get upset but I had/have that relationship with my grandpa so go for it! If that is what brings the peace and solitude in her life. More power to her. She is going thru alot at 4 years old.
So today lady k's system thought it was a great day to shut down and not work. I guess its acting like the nfl. Shut down go home. Only problem is her system did not get the memo important personnel has to stay that means all organs in attendance and going. So lots of vomits, dumping sessions, and now we have an acid burned bottom. Yup not a lovely picture but she can give pistol pete a good running right now with his bowlegged. We called the pedi and alerted him. I gave an extra dose of zofran and she has been a content sole for right now. I mean vomit wise. Dumping is still an issue 30 mins after she eats out it goes. Makes me want to scream bc I see her in pain. I have to say I am happy that we have avoided the er! So far anyways. Please knock on wood for me.
You know she always has this way to amaze me though. All 3 of my girls do. But tonight through k feel like doggy do, she got onto the bed and we do kisses and snuggles and she came up and started it. then tried to tickle me. I swear that kid knows how to make this mommy cry. Just because I see the fight she puts out even when her system lets her down. Then she said mom i wish you could make tummy feel better. Oh hun I wish I could.
this journey that i am on a mother with a child who has a very RARE disease is not an easy road. you have so many dreams and aspirations and when you hear the diagnosis and stuff your world tends go by the wayside but when she puts those arms around me and does our kisses and snuggles it makes this journey worth fighting for that much easier.

Two naps and I am still so tired!

I took a small snooze and then took another nap. I am so beat. So a review of the week. all 3 of the girls have/had strep. Alexus has strep and pneumonia. K well she is her usual self. She gets sick her whole system goes down. As I started to write this blog k started vomiting. Ugh. We had a conference with dr b. He said that we have to figure out what is going on with her pacemaker. It is going below the settings and the only way they can figure out why the pacemaker is not catching it is her ans system is tricking it. The pacemaker expects a few beats to be off and her ans can cause one beat to be off. We seen the cardiologist on thursday n this is what the cardi said too. So they both agreed to put a holter monitor on her. I hate them just because I have to remember to drag the cell and to make sure i wake up and push the alerts on the phone during the night when we dont have a nurse. We discussed her application going to the NIH. We are praying we get approved. I love our pedi so much.. He does so much for us and not just medical stuff.
I am praying we get some answers on our pm.. I am not sure she can endure another surgery or I.

Warning it has been a crappy day!

Yep just what the title says. It has been on heck of a day. My car was broken into last night after i came home from the gym. I was going to come back out and get it and kenadie was having an issue. Yes my doors was locked. They stole everything they could easily get their hands on. Then they decided to take themselves a little shopping trip to walmart and spend 800.00. Stupid bastards! K's report from Cleveland was in there. ugh You know how hard it is going to be to get my paws on those reports?! Its going to take an act of congress almost. I called the credit card companies, bank, paypal, i need to call the credit bureau to let them know. Then re-order my drivers license tomorrow also get new ssn cards. This really does suck. We also have to go down to social security to change k's payment method. I called dhs that works with her stuff to let them know too. Just in case.

So saturday was genesis last basketball game of the season. It was awesome to watch how much her team has grown they all are newbies! lol. So it was hilarious! I can't believe how much she is changing and I feel like I miss so much of it. I remember giving birth to her and sitting outside of my work and crying for 20 mins because I was going to miss so much and my grandma was wonderful about letting me experience it first too. I never thought I would miss because of me being too busy for her. I try though. I love to hear what all she does why I am gone too. I have to say though my small circle of support was great during the basketball season. If i could not be there her daddy, nana, papa, and/or godparents were their routing her on!

genesis getting her basketball trophy.

Genesis played her last season game of basketball today. Good job g!

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Thoughts for today.

So today has been quite the day. I had clinical today and that alone was a challenge. My good friend who is usually by my side through this was not there. She would no longer be there. It was hard to walk in there and hold my head up. I wanted to cry all day long. For once I took a lesson from it. I can not want to do things for other people. I need to want to do it for myself. (I am sure this statement did not make sense) But I have to want to become a nurse for myself. Not for my family, my friends, or anybody or anything else. And today I realized that I want it so bad for myself. I love the job. Today was not a very positive day but every patient I saw I tried to help or make a small positive impact on.
One thing I find difficult is relating to normal people now. This girl was in the hospital and says she was upset because she had been in for 2 days. I was like really seriously 2 days. I have been in and out 2 years more in than out most times. But to them its a huge thing. I hate that the disease has changed my feelings and identity so much.I used to be able to say yeah my kids are driving me nuts and be okay. Now when i even remotely think of that I feel so guilty and any mom has the moments where they go my kids are driving me nuts.
So yeah. Starting this weekend I start my exercise routine. This should be interesting and you might read alot of ouchies. lol.
I will try and post a blog tomorrow. I have an email and stuff for american airlines to do. Wish me the best of luck. If it comes through I will share the news.

attempting to update while on the plane!

So as the title states I am on the plane back home. K is so far past over stimulated I believe it will be next year before she calms down.
So Tuesday we had clinic with Dr chelimsky both the husband n wife. It always so nice to see them. They are so understanding. While we are there they always make us feel like she is the normal one and we are all jacked up. Lol. So she said the nay sayers can call her. Trust me she is an irate British woman. I believe it would not be pretty. She think k gi tract is slowly going downhill. Which sucks. Everyone has to be able to absorb nutrients and poop. I know we all like to blush n pretend we don't that unless you are a man then you laugh n think you don't stink. So she wants to do a rectal monometry (sp?) Test, egd, rectal biopsy, and an ekg on the stomach to see if she is a candidate for a gastro pacemaker. Also she suggested we apply to the nih to see if we can get accepted for her rare disease stuff. So we are going to try our best. Please pray we do get accepted. This would be great for k n the Autonomic team.
So today clinic was okay. He thinks her system is in a funk right now due to not receiving her Ivig while in patient. I want to smack the terds at the hospital. So he said he wants to hold off on bloodwork until she feels better. I of course was fine with that. I hate to see her in pain. She has been in enough pain.
Overall the team agrees her disease has slowly progressed and you know that just blows monkey balls. It's hard. Especially when your spouse is thousands of miles away n he calls hey hun how was clinic today. That includes a deep breath and reciting the whole appointment in which is like another slap in the face. Ah.
So we will be venturing back to Cleveland in 6 wk and will be there for a while. Probably a week or two.
Now I have to manage my school schedule n my family. As far as school goes it is definitely a challenge. My good friend who carries me through is having her own issues. She is my sanity at school. I feel lost on what I am going to do. I already had my cry. Now I go tomorrow n keep on keeping on. I have to do what is best for my family n that is get my lpn then move to my rn. I know I can do it. Deep breaths after all we do get to add a member to our family after I finish school. So I gotta keep my eyes on the prize.

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