Freaky Friday

Six Kids, No Water, and Men vs Women

I'd like to think I've grown up in the last 15 yrs, in the way of being able to speak up for myself. Sure I struggle every now and then, but for the most part, I don't let people smash me or my dreams.

Freaky Friday is PERFECT for what's been happening over the last few days....First, most of you know, that in a couple days, our "Krazy Bunch" is headed on a Make-a-Wish vacation to Walt Disney World in Florida....The kids are climbing the walls and sooooo excited!

Our family has been without water in our home since Wednesday morning. I guess the well pump, or the tank, or whatever, just decided this was a good time to test the wills of this already stressed out mommy! LOL

But we figured it would be an easy fix and headed to out much anticipated Urologist appointment. Poor Riley had a severe reaction to the procedure and we ended up in the Urgent Care, then in the ER....thus being old, it was a muscle spasm and kidney stone.

Thursday -- Still no water, and despite my best efforts and beating claustrophobia (trying to fix the well tank) we spent the evening making rounds, stopping first at Tina's for dinner and bath's for Brook and Rachel. (A BIG HUGE THANK YOU), and a load of laundry. Then to Linda's for the rest of the gang to shower up.....we finally got home at 930 at so, and the kids went right to bed.

Friday--still no water, but I called a few places, and I won't name names (Pat's Plumbing) was kinda rude to me, treating me like I was just some dumb woman, who couldn't possibly know ANYTHING about wells and pumps.....I mean, who was the one who climb her fat butt down that hole and spent a couple of nice cozy hours trying to fill the tank with air? MUAH! Thank you very much! I scheduled a service call anyway, and was told the call started at 100.00, no matter what.

Tina, gave me a few more numbers to call, and I got the best price when I called B&B plumbing....The guy was sweet and polite....and showed up a few hours after the call. I called the above non mentioned place (LOL) and cancelled the service call and told them I had some advice....that they needed to treat their women customers better...and reminded them that when people have good experiences with places, they tell one or two people...but when people have BAD experiences, then tell 10-20. :) Happy Blogging! heeheehee

I'm sooo ready for this vacation.

Another set of news, on a more serious note.....Bailey's MRI results, now requires us to see a Neurologist. Please keep her in your prayers. I will update everyone on her issues, as I learn more.

Thanks and God Bless

2 and half more days until Florida!

Thriving Thursday

I want to Thrive...I really REALLY do. But I tell you, some days....I just would rather jump off a cliff. The day started off, waking up to no water in the house! Ackkkkk! The well and the pump house has gone CRAZY!!!!

I needed to worry about that later, because Riley and Braden BOTH had urologist appointments that I had to race to. It's amazing just how much one depends on the water from the sink...LOL and I surely missed it this morning!

Baby wipes and bottled water got us through the brushing of teeth and the washing of hands....and I just ignored the mounds of laundry that is already beginning to pile up in the middle of the hallway. :)

We made it to the urologist where both Braden and Riley had to have a test called a VCUG.....Riley had to wait, while Braden went first. This test requires a very full bladder, so Riley was squirming around and very uncomfortable waiting her turn.

Both tests, came out as expected...although I was told for the first time that Braden has high blood pressure.....possibly caused from the increase in his ADHD meds....or NF, or the combination.

Riley will start "muscle re-hab" which means 6-wks of once a week visits to the clinic...Ughhh. But I hope this will help Riley, with her issues. (These issues are not NF related--Riley does not have NF)

After we left the urologist, we headed to take the kids back to school, when Riley began to scream in pain. Curled up against the car window, she cried all the way to Braden's school....I called the urologist and told them about Riley and they said she could be experiencing muscle spasms from holding in her urine for so long....and to give it an hour, she should be better. After the hour, she was WORSE! Another call, prompted me to take Riley into the Urgent Care clinic......Deer Park Urgent Care, sent us right out of there, to the ER.

SIX hours at the ER, we left with the same answers as when we went in. Severe muscle spasms. I hated leaving the ER with Riley in pain....I kept thinking..."What if this is something more... and these dumb Drs are missing it?" Everyone was ready to go, though....Brooklyn and Riker were winding themselves up in the separating curtain, and re-arranging beds....and pretty much bouncing off the walls.

We left....determined to figure out the water issue. I was feeling quite overwhelmed, but very grateful that something more wasn't wrong with Riley. It's 10pm and the water issue is still an issue---I won't be able to get to it until tomorrow.

These types of things make me feel extremely frustrated and crazy....like I want to fix it, but I am totally helpless. I can't do anything at all to change this....grrrr makes me nuts!

I guess I still managed to Thrive.....I still managed our "Family Meeting" to talk about our Vacation coming up....Prayers, "High-Low" and give hugs and kisses....the kids thought it was fun to use bottled water to brush their teeth....we got through another day....and sometimes even when you just barely make it through your day....You Thrive.

Like the 'Little Engine that could'.....just keep going....and going...and going---or is that the Energizer Bunny? :)

Turn it around Tuesday

At 14 yrs old, I was an awkwardly plump child, who wore glasses, had short tom-boyish hair. A girl who struggled with classwork, but just did enough, to make her teachers happy. I was shy, and I could count my friends on one hand.

I knew I was different, but no one knew just HOW different I was. I had seen Drs...Had physicals, and even with NF in out family AND with its tell-tale marking on my body, it would go undiagnosed for years!

I remember one time, while getting dressed for gym class, and slipping the gym shirt over my head, a girl making a comment about my "dirty back". "Ewww, Kristi, You need a bath!" I had never looked at my back before, I mean, who really needs to, right? But I knew I wasn't dirty. Another girl came up to me, before my shirt had fallen to my hips and poked me, "Ya, and what are all those bumps?" I just slammed my locker shut, fixed my shirt and walked out of the locker room, with my shoe laces flying.

I walked around the corner, out of site and reached my hand up my shirt and felt my back...I felt tiny bumps all along my spine and around my hips and I began to cry. I slid down the wall and put my head in my knees. The anger was welling up inside me and my breathing became fast. I tied my shoes and wiped my face. I looked over at the group of girls in my class who were laughing and pointing at me. I wanted to run away! What was this , that was happening to me? Why weren't my parents talking to me about it? Why haven't the doctors said anything?

I am now a mother of a beautiful and wonderful 14 yr old daughter. Like me, she has NF1. Like me, also struggles in school. Like me, she has few friends and is socially awkward. Like me, my daughter possibly could have gone "undiagnosed" for years. But, unlike ME, Bailey has someone to talk to, someone to trust. Breaking the cycle is what I am all about. I am so proud, that Bailey is proud of who she is.....because when I was 14 yrs old, I was so far, from where Bailey is.

I don't blame my parents, or the doctors for not recognizing the NF in me, in fact it just proves that we need help in educating EVERYONE. My mom, to this day, is in denial about NF and its affect on the family....she doesn't really have a clue about the ins and outs about the seriousness of it all, and just wants to avoid it all. Neurofibromatosis is scary, no doubt about it, but avoiding the symptoms will not solve anything. Not talking about the issues involved with NF, will only make them worse, when you eventually DO decide to talk about them.

We have been open and honest with our kids from the start. Explaining, guiding, sharing and we have found this to be a much better way to deal with the hugeness of Neurofibromatosis. It works for us. It amazes me...so much, but it does. Bailey seems to have taken off and become passionate about standing tall in her own NF and I couldn't be more proud!

Standing tall - is all part of breaking the cycle...and TURNING it AROUND! HAPPY TUESDAY!

Sorry for missing my Motivational Monday....I will post some pics of the MAKE A WISH PARTY SOON! :)

Thriving Thursday

Well we had some good news at the Ophthalmologist today. First off....No more patching!!!!! Rachel HATED being patched...and I mean HATED! I practically had to hold her down and force her to wear the darn thing! We call that our "Mommy Torture"...LOL

During the exam Rachel was determined and focused and paid close attention. She read off the letters, only missing a few and going backwards on a few others. But for the most part, she did GREAT! The left eye is still seeing quite a bit different than the right, but the lenses that Rachel is wearing seem to be doing okay.

The reasons given to me by the doctor, for the vision loss (and she was sure to tell me that she had done some hefty research on our case during our 3 month time period) Was because of the complexity of Rachel's brain and how NF has affect her.

The brain tumor is one reason, but another reason is Rachel has underdeveloped corpus callosum and narrowing of the optic pathways. All of this is really not explained well by her pediatrician...so it's very frustrating. But the Ophthalmologist says that her research shows this is very likely the reasons behind Rachel's vision loss.

But today's visit went well....we got answers, and the testing was at least as good as last time...and not worse!!

After dropping Rachel off we went to the store to pick up the parts to repair her bike and I promised to have it all finished when she got home from school.

I'm not paranoid...It's just everyone is out to get me!

I'm used to being stared at. People look at me because I am carrying a 6-pack of kids, wondering how (or why) I do it. Or sometimes I get people looking at me wondering about my disorder.

Yesterday, I took two of my children out to run some errands, stopping at the Doctors, the bank, then Wal-mart.

I definitely have days where my NF seems more noticeable then other days( probably more to ME than to others)...and it seemed this was the case yesterday.

I had a nurse behind the counter at the doctors office look at me, snicker, then look away. I am very sensitive to this and I KNEW what they were looking at. I fixed my hair over the tumor on my eye brow and shifted my eyes to the ground. I finished my business, frustrated and wondering how and why people could act this way.

Our next stop was the bank where I made some deposits. We decided to walk into the lobby, instead of using the drive-up, since the kids needed to use the potty. I walked up to the teller and she looks at me and gives me this unpleasant, pity look, avoiding my eyes. "What the HECK?" I think to myself. She must see the tumors too. "I'm a freak!" My pulse was raising at the ignorance of these people. I just wanted to get my errands done and get home!

One more stop and I COULD get home. Wal-mart. I needed to stop and pick-up my contacts, so I went right in the vision center and sat down with a very nice lady to get my new contacts. She says to me, "Honey....Do you know you have paint or marker on your face?"

I looked in the mirror and saw a big purple streak running up the left side of my nose up to my forehead! Yeah. Nice. Seems the marker fun I had with Brooklyn that morning carried over that whole day.

I spend so much time worrying about what others think of me...I wish I would learn to just chill out and not worry so much.

So that's my Wacky Wednesday Story....I can look back now and laugh....I'm kinda wondering why my 5 yr old didn't point out that mommy had purple on her face....but maybe to him, that's normal....which is kinda cool!

Have an AWESOME and COLORFUL DAY!