So much to say....yet not much to tell...

Ok, so, we went to the nephrologist and had a kidney scan done. It was not a pretty sight. Luckily, this time Little M was sedated. Last time was a nightmare. I don't mean any 'ole nightmare...I mean heartbreaking, soul crushing, yelling, screaming and crying kind of nightmare.

After he was sedated, which the medicine they used the nurse's call "milk." It is a white medicine that is supposed to make you drowsy and fall asleep, but can be easily woken up. Not only that, but it is supposed to help you forget about what happens, in other words, him being cath'ed again. Well, it took the child 5 doses of the stuff to knock him out. The nurse's and tech's were amazed at how much it took.

Finally, he was out and I watched the nurse like a hawk as she cath'ed him to make sure it was being done in a sterile fashion. Last time, we ended up in the hospital for 5 days with a life-threatening kidney infection from a non-sterile cath. Even with all the sedative in him, he still squirmed and winced when they put a cath in him.

After all was said and done and he was out and cath'ed, my eyes were glued to the screen, watching as the lasix went into his kidney as I sat right next to him, holding his foot. I watched as the lasix went into his kidney and then down through the tube that connects the kidney to the bladder (ureter). At one point, the nurses/techs said "Oh, it's going into his bladder now." I said, "Nope, not yet." Sure enough, sadly I was right... His ureter filled and finally the contrast went into his bladder. His ureter was so big and with this only kidney he had, let me just say, it wasn't very good.

I waited a week for the doctors to call me to find out what the next step would be. I got a call back from the urologist pretty quickly (same day!) and he said that Little M's ureter wasn't so good. The doctor wants to be on the conservative side because another surgery having to do with the ureter could make things worse instead of better. Little M's ureter is like a balloon full of water with a little tiny leak. The balloon tries to empty through this little leak but stays full because the hole doesn't get any bigger. The urologist is afraid that if he makes the little hole any bigger than it could lead to urine refluxing (going back up) in to the kidney.

The urologist suggested a test that will show Little M's true kidney function, but the nephrologist has to order it. So far, even though I absolutely love Little M's nephrologist, still no call back from him. I will be following up with him this week though.

The plan was to have the catheter out before Little M woke up, but that didn't happen. He woke up just a little bit too early and the nurse took it out while he was awake. Not a pretty sight. Like I said before, the medicine was supposed to make Little M forget what had happened....well, not my little one!

Later, after he was coming out and we had gotten home, I asked him what he remembered and he told me just about everything that had happened. I was in shock. Luckily, I keep meds on hand for painful urination and he took the meds pretty well. Probably because he is getting older and can understand a little more.

So....that's what has happened so far. The plan? Once I get a hold of the nephrologist, we will get the test ordered. After we get the results of the test, we will then test Little M about 3 months later and see if the numbers change. If the numbers change, then we will decide what to do after that. Options are limited and it looks as if he is headed for dialysis within the next 10 years (if we're lucky, otherwise, sooner).

For now, it's the hurry up and wait game.... this game SUCKS!

Stefanie

Here we go again...

Here I go again...feeling down. What's up with that?? I'm usually so upbeat and always a happy-go-lucky kind of gal. Maybe it has something to do with the fact that the school took the IEP off of Little K. That was a hard blow. He's so smart and although his autism is on the less severe side, it has taken a LOT (and I mean a lot) of work to get him where he is...will taking his IEP away slow down the progress?? They give him a donut to sit on and a band for his chair so he is comfortable (he has this thing about sitting on a hard floor, he just won't do it). They say they won't take it away, but without an IEP, how is the new teacher going to know he needs them, or how are they going to justify letting him have them. The good news about him is that they are going to suggest that he go in to a super advanced class for 3rd grade, but that's not until after next school year. He's so intelligent, it's almost sick. He is 3 points away from being considered a savant child (and I think he was just tired of testing when it was administered to him). His school counselor said she had never, in her 15 years of being a school counselor, worked with a child or known a child with an IQ as high as Little K's.

Maybe it also has to do with my little Meryck...an ultrasound is coming up on Tuesday and I am super nervous about it. The doctor's said that if his hydronephrosis stays the same or gets worse, then we may be looking at another surgery. He has these dark, yet red circles under his eyes, which also makes me very nervous because I know he doesn't have allergies. We are testing him for cancer. It's not uncommon in Prune Belly children, it's actually more prevalent. He's not drinking enough, even though I push fluids, he's not peeing enough, even though I constantly remind him too.

Then there's the teenager. I just don't know what to do with him...I love him so much, maybe a little too much... My DH says I'm too soft on him, but I know I'm not. I think he feels lost. We moved at the end of his Jr. year in high school, he doesn't have any real friends out here, he sits in his room all the time on the computer and I have to constantly remind him to do his chores. He's not eating well, I just feel in my bones something is up with him. This is the child I grew up with, the child that has taught me so much, my rock, my one constant. I want so badly for him to talk to me, and sometimes he does, but sometimes he shuts me out and it hurts. I know it is typical for teens to shut their parents out, I get that they think that parents' rules are lame, I remember being a teen myself, but I've always striven to be a better parent than my own parents. I want more for my children.

I know there are so many other parents out there that have special needs children that have much harder lives than mine. My heart goes out to all of them. I'm told all the time how strong I am, but really, am I? Many people tell me what a great mother I am, but why is it that I always feel like I could be better? Some people tell me they admire me, but why? Because I do what I have to do for my children and family? Wouldn't any other mother do the same? What is there to admire about that?

In trying to get out of this funk, I've decided to list a few things my kids have taught me and some things I am grateful for, so let's see what I can come up with...

1. My kids have taught me patience, and a lot of it. I used to pray for patience, but I don't do that anymore. Why you ask? Because every time I've prayed for patience, I get a lesson from God in patience. Now I ask for assistance in getting through a situation instead.

2. I have become a stronger woman. I stand up for my children and am their voice when they cannot be. I educate myself so that I know almost as much as the doctors so they cannot walk all over me or use my children. It is because of my children I am strong and it is for my children I am strong.

3. Perseverance. When I feel the options have run out, I am always looking to find more options even if I have to think "outside the box." I plow through the things that must be done, regardless of sleep, food intake, migraine, headache, loneliness...nothing matters but reaching the goal, whatever it may be for that day.

4. Humility. There are times when I need help, emotional, physical, mental...When I had my hysterectomy in 2005, I could not work for 3 months, my job laid me off and I had 3 kids to support by myself. Not to mention it was near Christmas. I went to churches for food for my children, had a now ex-friend move in with me so the children could be cared for (long story not worth getting into as to why she is an ex-friend). I made sure my children were cared for by just about any means I could.

5. Faith. Through this all so far, my faith is unwaivering. I do not ask "Why me?" I know why me...and this is why for any of us that have special needs children - You never will know true joy unless you know sorrow and you never know sorrow unless you know true joy. I know with all my heart that He will provide, no matter how hard times have been or will get. Hard times will not end for me, but I know He will be with me every step of the way.

6. Love. I love my children. My children love me. Just as my husband's job has to come first because he is military, so my children come first for me. They have to. Without their love, I would be lost. I am a mother, a true mother in all sense of the word. Being a mother is what I do best, what I am meant to be. Caring for my children is my life, sometimes to my own health's detriment.

7. I am grateful that God has loaned me my children. I pray every day that they will outlive me and they will grow up to be wonderful, caring men.

8. I am grateful my children picked me to be their mom. They must have known I would take good care of them, or God would've had them pick someone else.

9. I am grateful for a simple smile on my children's face.

10. I am grateful that Meryck hasn't had to have any surgeries in a little over a year.

11. I have learned to cherish every moment with my children. Not just because Meryck is sick, but also because I look at my teenager and wonder where the time went.

12. I have learned that it's the little things that make them happy. I took them to the store the other day to pick out a paint for their rooms and Little K picked the color for the little ones' rooms. It is a beautiful blue. I won't forget the smile on his face when I thanked him today for picking such a beautiful color.

13. Teaching an autistic child to tie his shoe is not an easy task.

14. I learned how to wash Little K's hair so it doesn't hurt his head (he is sensory sensitive and a basic wash bothers him).

15. I'm thankful I try to give my children as normal a life as possible. I do not use their special needs as a crutch, nor do I allow them to use it as a crutch either.

16. I've learned that being a mother involves a lot of teaching. Teaching how to take a shower without help, how to pick up a mess without making more of a mess, how to wash their faces properly, how to brush their teeth, how to look be optimistic.

17. I've learned how to speak a whole different English. I taught myself to speak positively, in other words, I don't ask them to stop unwanted behavior, I tell them to behave properly.

18. I've learned to practice what I preach. I use manners so my children will do the same naturally. I do not curse in front of the children because I don't want them to curse more as adults.

19. I've learned not to make promises unless I can deliver.

20. I've learned to point out more things my children do right instead of only seeing what they do wrong.

21. I've learned to look at the bright side of everything. There is always a silver lining, sometimes you just have to look harder than others.

I could continue, but I feel a little better and I really want to go spend some time with my teenager. I have a gut feeling he needs me, so I'm off. Thank you for anyone reading this rant of mine. My upset cannot shadow my children's needs...Things will get better....one day...

Stefanie