DiRN's Journal

I guess the best way to describe the past week or so is it was ouchy. so...

C. got home from the hospital. He was still pretty sick and lots of respiratory secretions. Hospitalization is traumatizing to these little guys and girls, so he was pretty wild to care for the first couple of nights. All of the suctioning really didn't help matters at all. His oral aversion is just out of control, plus they changed his formula in the hospital. Now his feedings don't taste the same or have the same texture or consistancy. So...I worked with him, helped him get things sorted out. He is much better now...both physically and emotionally. I knew that I had won when he had a bad dream (He has a lot of them when he is stressed, same as me.) Instead of fighting me and making me be his recliner, he put his arms around my neck, laid his head on my shoulder and sighed. It was like he was saying "Oh, I'm so glad that you are here."

If he fights being belly to belly with me, I usually sit in my chair, set him in my lap, lean back a little and either rock or sway side to side. That's how I be his recliner! I don't blame him when he gets that way:between the trach and the G-tube, if you aren't careful you can hurt him. So belly to belly hugs are very threatening and as a rule, he only tolerates it from his mom and me.

Things did not go as well in court for his mom either. We had a hearing and they are talking

about extended weekend visitation. I do not even to pretend to know the rationale behind that

little ditty! The dad has seen him 1 time all summer. He has contributed $100.00 and a box of diapers to his support since May. He did not call the court counselor to give his side of the story until 2 months later. He hasn't shown up for court appearances. And now...THEY WANT TO WORK A SHARED CUSTODY AGREEMENT!!!!!. I haven't seen this much BS since I worked at the camp and cared for the Cows!!!! I just have to hope that they will catch him in some of the big lies he tells and maybe, just maybe, the judge will show some of the intelligence and common sense that got her into lawschool. You know, Right is right and wrong is wrong sometimes. I know that most of politics and all of the law is about coming to a deal. You get your piece of the pie, and the rest get a piece and we work out concessions that will supposedly make all the people happy.

Yet, there is an ultimate right and wrong and these thing get ignored in the deal. THIS THING WITH C IS WRONG!!!!! The doctor (his dad) could give a flying fart about the kid...His pattern of repeated behavior proves this. He's just saying the things he's saying because he wants to use

C. as a weapn against his  mom. THIS IS SO WRONG AND IT WILL BACKFIRE AND THE ONE THAT GETS HURT IS C!!!!! In case you haven't noticed, I am a little angry about this situation!

I'm being sarcastic. And they think he is more credible just because he has MD behind his name! I could have had MD behind my name if I had a totally different batch of people raising me! Doctors are more than capable of lying...same as all of us ordinary mortals!

To make matters even better, my relief nurse went on maternity leave early so I picked up more time. When I overwork, I get a mite cranky... But it was worth it. Christian is doing well.

Then there was the H1N1 or "swine flu". Yup, the flu popped up in my home. Beth had it worst, she is 25 and has never had a flu shot. She also hasn't had that many cases of the flu so her immunity is limited. Paul caught it next, and he was sick for 2 days. He's older, has had a chance to have and get over a lot of different strains of flu. That makes his body better able to fight it off. I only ran a low grade fever one night...I have had flu shots yearly since the 90's. That's when they moved health care providers into a "High risk, must immunize if possible" category. Once flu vaccine is released, somebody is trying to give it to you if you are a nurse, doctor, EMT etc. they really want you to have a flu shot. I probably am immune to most strains already.

Then there's Kylie... We got a blow from out of the blue yesterday. I knew that she was having vision problems, probably from the stroke. Her right eye wanders when she's tired. So she had

an appointment with an eye doctor yesterday. Come to find out that...She is near sighted in one eye, farsighted in the other. She has an enormous astigmatism, an abnormal curvature in the cornea, or clear outer covering of her eye. One of her retinas is scarred, the other one isn't attached at the edges so it curls up like a piece of baloney that has dried! In other words, she cannot see well at all. In other words, she is heading over to the Cleveland Clinic on October 15. We get to deal with and learn a whole new MAJOR Medical Center! There they will be able to help her, hopefully.

If this child was a car, she would be a LEMON! But she is my granddaughter and I love her with all my heart. I hate that we have to run her through more surgery, more procedures, all that jazz. This is the period where we are supposed to catch up, so we will be ready for the next surgery, the Fontan, about a year from now.

Well, as Aubrey put it "It isn't fatal, we'll cope" And she's right, we've seen our way through much worse and come sailing through. Just have to keep relying on God, he definitely hasn't failed us yet. He is faithful.

So, we went apple picking yesterday afternnoon, after the doctor's appointment. This is a  family tradition. Aubrey joined us for the first time back when she and Ron first started dating and she loves it. So...This was Kylie's first time apple picking and she had a ball. R and A have some great pictures and as soon as they email them to me, I will post them. It took us a couple of hours to pick a half a bushel of apples... we were playing more than we were picking. Many trees were climbed by Ron, Beth and Aubrey. I didn't have to haul Aubrey out of the trees like I did last year when she was 7 months pregnant.

They were getting a really cute family picture of Ron, Aubrey and Kylie up a tree when I came up. I had decided that it truly was time to get that bag filled and had actually picked some apples. It was so cute, but there was some sort of viney plant around the tree, just covering the trunk where my kids were sitting. It was turning red, but there was something about it...I looked at it more closely and I was so glad that I didn't touch it...It was poison ivy!!!

So Ron, Aubrey, Beth and Kylie have all been exposed to PI. Paul too and he gets it if he LOOKS

at it. OUCH!!! lol Oh well, it is this type of thing that keeps my life interesting and keeps me on my toes!

Love and Blessings, Diane