A few rambles!

Good morning. Its too early for me to function even though its 9am. lol. I want some coffee but have not had any in over a week now. I have lost count. So I need to get some ramblings off my chest.

First: For mothers day I got a mothers ring that has all my children listed on it. Yes it has angel Robert on it and his birthstone. Well Alexus was like mommy who is that on there! There is only 3 of us here. I briefly explained it. Now she wants to tell everyone she had a brother who passed away. She says mom he is in heaven and one day when i am old and I can't move I am going to see him. I kinda laugh and say yes one day when your really old. Well I found out by her care provider that she likes to talk about it quite often. I don't know why. However I dont agree with people yelling at me for talking to her about it. She will know that mommy had a baby who went to heaven and his name. I am sorry you do not feel comfortable. And it is not YOUR position to tell me well i lost x babies and I don't count them. I honestly dont care how you manage this. I cope the way I cope. I Will talk to my child about her feelings and why she wants to talk about it. Also do not tell me well i lost mine alot further along than you and we do not talk about it so I should not. I am sorry you feel that way. I really wish people could be sensitive to other people.I will talk to her about this though. That she can talk to mommy about it and to just refrain from telling others.

2nd thing on my mind: Ms k counts are low as we had discussed before. Now we are debating about having her port put in. Poor girl has no veins for her blood draws. It takes multiple trys. Like 4 or so. Then she is so upset and over stimmed that it is so ridic. Her immuno dr in cleveland has to make the ultimate decision on the port and he sent me and email and said its up to me. I need to weigh the pros and cons.
Last I checked I dont have my MD yet. lol. I have thought about it. ;-)

Also we heard there is a tummy bug going around. Please pray that she does not catch it. Genesis threw up the other night. K counts are low and it is an automatic admission and it usually takes us about 2 weeks to overcome it.

A well needed update!

Hello to those who read my blog. I am sorry for the lack of blog updates it has been so chaotic. At least I try to keep my fb updated. So.. Since may kenadie has had her blood drawn and it has came back low. :( She is not responding to her IGG infusion like she had been. Her vitamin D, alk phosphate, lymphocytes. Yeah a list of them. So we are going to increase her infusion rate, going to increase some other meds. She is such a fighter. her pediatrician god bless his soul is amazing he will email me or call me whenever i need him. He is so dedicated to her and helping us with her stuff.

One thing I made a decision on was that Kenadie will be a DNR in the pedi world they call it AND (allowing natural death to happen). If something should happen and she has no heart or is not breathing I am not going to allow her to be resuscitated. Yes some of you may not agree with my decision on this however as a parent I need to know what is best for her. To me I don't want her living on machines. We are still doing all of our treatments I just have this lined out in case something should ever happen.
Unfortunately as a special needs parent with a chronic disease these are some things you have to think about. It is not the easiest either. However it has brought me some peace that I know what I want for my daughter.
The other day I was thinking that no parent should ever have to think about their child's mortality and such. But the world is not fair so some of us have to and some have had bury their children.
Another thing her pedi and I talked about is the way we choose her treatments now. Is this for her or to her? For her is to keep her quality life a happy one. To her is being selfish and making her miserable. Also viewing life as Enjoy the day and make the most of it because you have it not because you might not. Hell anyone of us could kill over tomorrow. So you have to just enjoy the day bc you do have it. Since having these discussions it has made viewing treatments and stuff alot easier. I can cope with the impromptu appointments better.
Last week we found out that ms k has a cyst in her urethra and some tissue is covering her vaginal area. We are doing hormonal treatments and going to go to the uro dynamics doc. She cries in pain so much because her vaginal area hurts so bad when she pees. But we have been trying to get pee from this kid for a week and omg it is so hard. She knows we are trying. We have tried u bags and a hat. everything. Silly girl.
Well thats a mini update i will try and do more now.