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.