meeting summery

When I told my husband about yesterday's eight hour meeting he summed it up this way:

"What are we going to do tonight Hunt Family?"
"The same thing we do every night, Ann. Try to save the World!"

Here they are

Here is my initial collection of Disney Princess inspired Temple Wedding Dresses.

The very first design is Arielle. She has a satin bodice with beading, and a full tulle skirt with beading.

The First one is Belle. This is a satin dress with detachable puffed chiffon overskirt and scarf.

The next is Jasamine. It has a bubble skirt, satin accents at neck and a thick brocaded chiffon for arms.

Third is Mulan. It's main fabric is a brocade of white on white with satin trim and frog closures.

Fourth is Snow White. If you remember how the plain clothes her wicked step mother put her in only made her true beauty shine out more.... we have a simple interlock knit for the bodice, skirt and sleeves with satin belt (with bow in back), and sleeve puffs. It is tonally embroidered around the neck.

Disney Princess inspired Wedding gowns

Well, in the spirit of this article, I did look and find the full collection on line and it was a slight letdown.

So in my own way... I created Disney Princess inspired Temple wedding gowns. (these will be added shortly).

Here is the couture
http://www.disneybridal.com/collections/cn/bridal/cn1.html

Collage Schoolarship here we come!

Air Clayton

Air Clayton, Clayton dribbling on the ball, Galen making a basket.

If you can't tell we got our basket ball hoop up this weekend. Clay took to it like a fish to water and Galen has always been naturally talented for sport.

Service and Love

Ponder with me for a bit on the interconnectedness of the concepts of service and love.

How do we show love? - not just hormonal desired for copulation, but real love. We show it by serving that person. We bake them cookies, run their back, watch a movie with them you wouldn't see otherwise. We do things we think will make them happy. We serve them.

What happens when we serve others? We learn to love them. When I find myself loving my customers I realize it is because I can serve them, I can meet their needs and make them happy. That makes me happy and I feel love towards them.

I have found that it works that way for almost all relationships. When we give service we are creating a bond and opening pass ways for friendship and love. When we forget to serve others these doors are slowly covered with spiderwebs over time and we loose that bond or that love.

It works both ways. I also find myself loving those who have filled some need for me. Like, I love my house cleaners. I love the man who takes my garbage out, who helps me laugh when life gets too serious. I love those who provide me with what I need most.

Of course receiving service only creates part of a bond, but when 2 people give and receive service frequently they create a tight bond and love is unfeigned.

So here is the challenge for the week- if there is a relationship- any in your life, business, church that you would like to strengthen- serve them this week and see what happens.

Fresh pics- taken this evening

I love the scale of Clay in front of our mini van.

snow fun

Can you believe it took until April for the kids to play in the snow?

And here Galen is trying to get Clay to sit in the hole for a pic.

Now we have Galen reaping his rewards of the hole digging.

And of course 2 cuties on the swing.

It s nice to be outside

We have Ewan on a bike and spinning his wheels in a way to throw dirt.
So boy!

And Galen and Ewan digging a pit in what was my garden last year.

Happy Birthday Amy!

And to honor you at your birthday I will tell you that something you once said has helped keep me going this last month.

"When you are going through hell, don't stop."

Surgery

Ian's Surgery is Scheduled for June 6th with a premeeting with the Doctor on the 5th.

Can I be ornery yet?

You would think people would let you off of work if you couldn't hold any reasonable conversation with out raising your voice, my husband even lets me off the hook at that point.

I am either pregnant or PMSie (it is not worth wasting $10 just to find out when natural will probably show you for free in a few more days) along with riding the emotional rollercoaster of that which has been so blazen as to call it's self a week.

I am tired, and want to throw in the towel, and yet I press on (only after a good nap though). Why? because I recognize that the only towels I should be throwing in are the dirty ones, in to the wash machine.

So now that I got that off of me, it is time to back track and tell you what happened with Ian since I last blogged.

We stuck around on Thursday, waiting for our appointment with Dr Raffle. But on Wensday night all my research pointed me in the direction of making sure Ian's bowels were clear, so the first useful thing I did Thursday was to call his GI doc's secretary and and ask for maintenance meds to keep him pooping. It's just a powdered stool softener that you mix with water or juice twice a day.

No problem they had a prescription for us and we were able to get that filled while we were waiting for the appointed time with Dr Raffle. We checked in 1 hour early to the appointment desk, and find out they canceled our appointment, but we were welcome to reschedule for 4:30. Of course by this time we had checked out of our hotel and were just dying for heading home, but after a lot of internal arguments we decided to stay and get those questions answered.

So at 3:00 they called us in, and we sat down with Dr Raffle and his temp nurse because the one who normally works with him and does all the scheduling is on vacation this week. and we began to ask our questions.

The answers were a lot shorter then we thought they would be, and of course in the end we only ended up with more questions. But here is the rundown of the questions and what we learned.

1. You mentioned that there was fluid in the spinal cord. What is the significance of this, what does it mean for function?
A: There is no discernible significance to this that we are aware of, it is normal to see some of that with the internal mencocloial.

2. IS there anything you do to fix that?
A: no

3. How are you going to fix the fluid sack?
A: We are going to take the excess skin of the sack and sew up the hole where the sack came out. I would also like to go in from the back and see if we can untether the cord.

4: You mentioned something about tightening up the glut and rectal sphincter muscles...can you give me more information on that?
A: You would have to talk to Dr. Moir on that.

5: What is the expected procedure? When are we looking at it? Are you going to use any special anastegia?
A: We consider this an elective procedure. There is no rush to have it done. Follow up will be in a few weeks and then a few months. Hospital stay about 4-5 days. The only difference in anastegia is that it won't be given with the muscle relaxant.

6: Now, I have a child with autism, which as we know is considered a neurological disease but is behaviorally diagnosed. What possibility what it be that he might have something like what are seeing with Ian?
A: I don't know much about autism, but there has been no connection made between the two.

Then we discussed the diagnosis of Dr Hussman and he said all those questions have to go back to Dr Hussman.

He also mentioned in there somewhere that they are not even sure he has nerves to the bladder and rectum, but that when he is in surgery they will find out because then he will see or not see them.

A catheter to my brain

The one thing I hate about the Mayo so far is that I have yet to sit down with a Dr and have him tell me good news.

I am so tired of spending several days in shock after each doctor consult. I really hope we are down to the lowest this is gonna get. I think I would rather sit through Dick Chenney's talk at the Y's graduation (in many political social beliefs I am very liberal), then to hear another doctor assign yet one more diagnosis with a not perfectly rosie picture.

So now you are all sitting there wondering if I am actually going to tell you anything useful. Well, I guess if I blog it now I can ignore you later.

Ian's new diagnosis is neurogenic bladder. That means the nerve signals to his brain doesn't signal well that his bladder is full and therefore hasn't been urinating when he should and so his bladder capacity is over twice what is normal for his age (bladders stretch to accommodate). The kidneys also seem oversized, but they do not yet know if that is significant at all. So far the kidneys show no scaring and they did not see any reflex from when the bladder lets loose.

Ian's squeeze ability for his bladder also seems very weak, and his sphincter is not as tight as it should be. The nerves that control the bowels are very close to those that control the bladder and it is not surprising to learn that they are the same nerves that can control erection and some reproductive aspects.

Dr Husmann did explain that what they have is a current diagnosis and that after the neurosurgery that many many things can change. He explained that in 6m to 1 year after surgery the nerves will heal and we will hopefully see positive changes for these functions.

Meanwhile because they are afraid of him not voiding completely (or even enough) they have prescribed intermittent catheterization. And a check up with the Doctor 2 days after surgery and 6 months after surgery.

Every learned how to catheterize your child? I don't recommend it if you are looking for fun, and we are suppose to do it 4 times per day. Are you praying for us yet?

today's tests

Ian did not care for 2 of the 3 tests today.

The first test used a catheter to fill his bladder with Iodine and then had pictures taken while he peed. It was not easy for him to want to pee. He also doesn't care for catheters. That test basically showed us that his uetheter is in place and looks normal.

Ian's next test was a renal ultrasound. He fell asleep during that test. It didnt bug him one bit.

His last test was a VCU- another test with a catheter, filling bladder and a sensor in his rectum and sensors on his skin to record muscle movements and pressure with his bladder function. Once all the tubes were in place he calmed down for it and enjoyed watching cartoon son TV. The test is supposed to last until he starts to pee. He didn't. They filled him with 375 ml and he didn't pee. It wasn't until we were back in the hotel room about 45 minutes later that he finally did.

worth reading

http://www.csmonitor.com/2007/0402/p01s03-ussc.html?page=1

And we're off

One more trip to Rochester. One more series of tests and doctor consults. One more week of eating out and lacking in real ground under our feet.

One step closer to action. One step closer to a potty trained Ian, one step closer to eternity.