Friday, August 20, 2010

Our Adenture-and YES, it was a Drs Appt.

So, Daddy worked yesterday as he always does and then had to go back in last night to work the midnight shift to have today off for
Hunters appt. Loooong day for me. I thought it would NEVER end. I lay one kid down for bed, the other gets up. Back and forth at least 3 times.
So daddy gets home this morning. Had the kids fed, diaper bag packed and DVD player charged. We were ready.
On the road by 830 for Hunters 1030 appt. We got there right on time. Sign in and he isn't even brought into a room until 1100. OK, patience mommy. The waiting room was packed. Going to be a long day.
The nurse checked his eyes, and noticed that with his left eye, he is tilting his head just a little to the left to compensate for his left eye that has the Duane's in it. His eye muscle will not move the way it should. It doesn't move unless he looks to the right without moving his head and then it shoots upwards. But, his eyesight in general, was perfect. She tells me that his eyes do need to be dilated and then after dilation, the wait would be about an hour before the Dr. calls us in to be checked.
OK, patience mommy, we can deal with that...
So the kids started getting hungry. When aren't they, honestly. No problem. I had packed PB&J for the kids to eat while we were there. NO MEDS!!!! The kids had taken their enzymes out of the diaper bag. They can't eat and they were starving. So, we resorted to a couple bags of fruit snacks for them and held them over for about 5 mins.
So, I'm thinking, we are 2 hours away from home and no meds for them to eat. We have lunch and dinner to go. Hmmmm, lovely.
So, then the lady calls Hunter in to go in for his drops. Well, Hunter in the bathroom Miss. She tells me, "It will only take a min for the drops." By that point, I was just frustrated. I'm like, "Hunter is in the BATHROOM!! You can't give him the drops now." Um, are you serious?!?!
So Hunter finally came back and was screeeeeaming when he was getting the drops put in. Hunter has extreme Dr. anxiety and this did not go well at all. Finally got them in.
I called the kids' nurse and nutritionist while we were there to see if we could just go up a couple of floors in the hospital to pick up some enzymes for the kids so they could eat. Thank you Lord, she called back and we got some meds!!! Yay!!!
The whole appt took 2 1/2 hours. It seemed more like a CF clinic visit rather than an eye appt. I drove home and it was literally back to back traffic. We were lucky to move 50 ft in 45 mins.
My stress level was high.
We finally got home around 4 and what a day. I am beat, hubby is beat, and the kids are WIRED!!!
All in all, it was a good appt. only because Hunters results came back great. We don't have to go back for another 9 months, unless of course his eyes get worse. Okay with me!!!
HOME SWEET HOME--the sweetest words I can say right now.

Thursday, August 19, 2010

Stress and Anxiety

That's me in a nutshell. Stress and anxiety. I've had it pretty much since I can remember. Never thought anything of it when I was in my late teens or early twenties. Until...Hunter was born. It all started brewing. I always thought it would be something I could, myself, control...wrong.
Having a child can be stressful in itself. No doubt. I've never really told the story of how Hunter was actually diagnosed. All of it.
When Hunter was born, at that time there was no CF testing with the newborn screening, all was great. He passed the meconium ileus that he needed to, we went home. A couple days later, we noticed his skin turning a yellow color. Jaundice. He had to be put on a machine that would help control it. That got better in time. Hunter was downing 8 oz. of formula 6 or more times a day at a "newborn" stage. Never thought anything of it. Just thought he was a little porker, despite the weight gain that he was not doing. I would literally prop the bottle up in his mouth with a pillow and he would just gulp it down. Until the day came when I sat him up and EVERYTHING came flying back out. Ok. Thought maybe he just got too much at one time, or he just wasn't feeling good. Um...yeah.
Until it happened again, he was gagging. First time mom, not knowing what was going on, hubby at work, and extremely worried. Took him straight to the pediatricians office and they told us to go up to Rockford Memorial Hospital. Through the ER he went straight to the operating room. Come to find out he had a bowel obstruction, part of his intestines removed, and diagnosed with CF at that time, while staying 2 weeks up there. Stress/Anxiety was very apparent.
Ok, so got Hunter under control and then Ren. 5 times in the hospital her first year. RSV when she was 3 weeks old in the hospital on top of bleeding from the mouth. Brandon and I later figured out (NOT THE DR'S) that it was due to not enough applesauce with enzymes. Go figure, who knew?? Hunter was staying with my parents and I told them to go get him tested for RSV as well. He came up positive. So, a child in the hosp with RSV and bleeding and a son 2 hours away with my parents with RSV. Frustrating. Everything in the end came out fine, as it always does with the faith in God.
Fast forward 3 years later. A lot, granted, has happened in those 3 years and I will blog another time about the things that did happen.
I was diagnosed with having anxiety and put on meds for it for anxiety disorder just last year. Is it possible for someone who has a child with a "condition"/CF ( I don't EVER put disease because it WILL be cured) not to have stress or anxiety. I went off of my meds this week and could tell a whole world of difference. Just needed a refill, that's all, and I would rather spend that copay on the kids than myself, BUT it's something I know now I need. Today proved it. I need to take care of myself.
I HATE having to rely on meds. Thinking I can control myself. I have so much going on now, that I know a little bit of help doesn't hurt, especially if I'm taking meds for anxiety disorder.
I guess I would appreciate in knowing if I am the only one. Am I the only one that stresses about their children and the CF? I think not, but how do others deal with it?
Am I the only one that has literally a million things going on in one day and try finding the time to get it all done?? I think not.
Am I the only one who home schools their children and takes on that responsibility myself?? I think not.
Why do I feel so overwhelmed.
I wouldn't have taken on all I have if I didn't know I could.
I chose this life, I want this life, I wouldn't give this life I have up for the world itself.
Just feeling like I need to take on the world and not sure if I can.
As long as I can take care of my kids and husband that's all that matters.
Meds, treatments, homeschooling, hockey, the house, meals, naps for Ren. I know I say it a lot but you know what? I am so proud of myself for taking these on. Because I KNOW I can do it
and it benefits my family most of all.
Thanks for listening.
Much Love.

Wednesday, August 18, 2010

Yes, I Am Also A Teacher

So school has officially started. Started this last Monday. The kiddos are having such a great time with it as am I. Serenity has been really great about giving me the time I need to be with Hunter to teach him. I just give her something to do, as in her own homework. She loves to be included, as any child would be. Sometimes, it gets a little trying, but that's when I realize I need to find a different or new way of teaching.
I think I have found a schedule to go with, I think. At least it's working this week. I have to fit in treatments, breakfast, lunch, schooling, naps for Ren, then figure out what in the world dinner will be that night, and then hockey practice too. It's working though.
I never ever imagined I would be doing as much as I am as a mom. I wouldnt trade it for the world at all. I know my kids are safe, I know they are healthy. They are getting all they need from here at home and outside of home as well.
It's not easy by any means. Some days I just don't "feel" like doing some things. Then, I think to myself, I don't really have a choice. I NEED to. These kids depend on me for so much. I can't let them down as a teacher, nurse, etc., but most of all their mom.
The one thing I want my kids to do when they get older, is to look back and know that their mom did anything and everything for them and their benefit. I want them to be proud, most of all.

Tuesday, August 17, 2010

Special Moments

Tonight is a night where it's time with the family and the kids. Dinner, baths done, and now playing Dinosaurs. I love the special moments I have like this when nothing is planned but playing. Video taping the special moments to look at in the future and enjoy those special moments.
My kiddos are my life. I think that if anyone knows me or knows of me, they know this. Although I am having a hard time balancing treatments, homeschooling, the house, laundry, etc... these times are to be cherished and I don't need a clean house to do this. Cleaning is saved now for the weekends, and lucky daddy!! :)
I hope to figure out how to post video on here, because I just can't and photos (slideshow), but I will. I want to share these moments with everyone in the world.
These are two very special kiddos that God has blessed me with and it would be selfish of me not to let the world see this.
Time to be a T-Rex!!
Later y'all!!

Monday, August 16, 2010

Hunter...Something A Lot Don't Know

Sure, CF...everyone knows that my son and daughter have it. Well, those that know us anyways. With this disease, it's silent. No one knows unless you tell them.
Hunter was diagnosed at 3 months with CF but then he was diagnosed with something called Duanes Syndrome as well.
Duanes Syndrome affects the eyes. The muscles in the eye do not move the way that they should. This is occurring in his left eye. Noticed this when he was a baby, but was always told that it is normal for his eyes. They said that since he was still so young, his body needed to basically grown into itself. Well, it continued to happen. Hunter was in therapies, so many until the age of 3. Speech therapy, Developmental Therapy, and Sensory Therapy. The therapies seemed to be working, so I thought.
The speech therapy was great for him. He still has a hard time pronouncing certain letters in a word, but what kid doesn't? Or adult for that matter? Homeschooling gives me that extra time with him to work with him.
He still has sensory issues. BIG TIME. I have never seen a child scream and run when he sees a fly. Not just a little scream, SCREAMING, like something terrible has happened. We were in a restaraunt one night, the server sat us at a table by the window. Big mistake. The whole restaraunt turned and looked--he was screaming so bad we had to change tables. Is this normal? Will he ever get passed this? He is starting to affect Ren now. It's hard for because just to get in the van is a chore in itself anymore. God forbid there be a fly or mosquito in there, all hell breaks loose. No one can really understand the extent of this unless they see him going through it.
So, back to the Duanes Syndrome. Most people look at it as if it's lazy eye, but it's much worse than that. He has it in his left eye to where the muscles are so tight that when he looks to the right and up, his eye shoots up. He has to compensate for reading, playing, watching tv and position his body so. He's doing well with it to this point, but if it gets a lot worse, he will need surgery. Having surgery on the eye scares me. What if something goes wrong? What if he's worse than before it? I don't know, all these thoughts run through my mind.
His original eye Dr. last year wanted to do surgery on him that following week. We went to Childrens Hospital where they get their CF care and the Dr. there said it wasn't necessary at this point. It would be more cosmetic than anything. We see his eye getting worse when he goes through a growth spurt. Thank God for second opinions and a mothers gut instinct.
We have this Friday another routine check-up up at Childrens for Hunters Duane Syndrome. I'm praying all goes well and ask for prayers too.