OK, I was doing SO well.... Then I got the flu. Just a quick note to all those who have redone plumbing inside. NOT a good idea to get the flu. I am not feeling sick anymore, but I am pretty wiped out.

I went to Back to School Night for the boys, only saw 2 of the 6 teachers I needed to see and was just too pooped to do more ( for those wondering - yes I still only have 4 boys but 3 of those boys have special ed teachers or resource teachers as well as general ed teachers). I sent Daniel to see 2 more teachers to take notes, and did a phone visit with one more. I missed Jonahs general education teacher completely. (sigh)

This morning I went to see Daniel deliver his campaign speech (he is running for school treasurer) and now, if you will excuse me, I think I will go take a nap now....

hmmm, remember way back when I said about half of the patients with EC develop lactose intolerance? Well Hooray!  I am in that half. ( oh joy...) I switched to lactose free milk in moderation and it makes the world of difference to my tummy.

I am actually doing really great right now. Two days in a row I have done morning routine, gotten the kids off to school, picked them up, and did all their homework and therapy with them all by myself! 

But then comes the fun part. Nathan is LOVING the book The BFG  I am reading to him for books and stories. Jonah and Ben are just loving having the  mom bedtime routine back in place. Daniel is reading Holes and I get so tickled because he begs to read "just one more chapter Mom PLEEEEEASE....". I love to see that excitement for reading.

Wish me luck to keep up this good streak. By the end of the day I am pretty exhausted, but hey, even when I was 100% well, I was pretty tired by the time I crawled into bed each night.

Its all good. I just love finally seeing marked improvement  ~ well other than the not eating thing, but hey, that will come in time and I have the feeding tube to make sure I get nutrition, so how can I complain :).

What is that old saying, "true friends are like diamonds precious but rare"... I used to take that sort of thing for granted ~ SO busy with the hub bub of making sure this kid had that thing ready, or the oven had SOMETHING in it for dinner, or the dishes had to be put away or cards for every kid in the boys classes had to be finished, or heck even bread had to be baked (yes I baked my own bread and yes I was insane).

Friday I  had a lovely afternoon. We were able to go visit some very dear friends down south in beautiful Escondido. You know, they are only about 40 miles away yet we didn't get down there nearly often enough. It seems so much further than that and I don't really know why.  Both sets of boys (mine and hers) get along beautifully and I truly enjoy just visiting with everyone in the whole family. I have decided I need to make sure I take the time for the things that really count in this life. Friendships are one of those "counting" things.

There are lots of  things that "count". The great part is, your list might be different than mine. I challenge each of you to first imagine that you only have a short time to live ~ but then are granted a reprieve. Now grab a pen and write your "count list".

Here is just a tiny portion of mine.

*kissing owies that kids swear will make their arm fall off (or so it seems with all the dramatic screaming)  so they can go back to fighting with their brothers.
*watching the look on your kids face when you say you are so proud of them
*snuggling with your child until that bad dream gives way to peaceful sleep.
*watching Saturday morning cartoons with your kids even though you can not stand Dinosaur King, Yu Gi Oh, or the millionth episode of Sonic X and can't get that STUPID theme song out of your brain
*figuring out how to reassemble Legos for the 7 millionth time.
*letting your little one tenderly  "help" you up the stairs when it would be much easier to cling to the railing
*the wonderful things kids say that make grown ups sputter a lot, bite their lip, turn away,dip their face or cover their mouth really fast. Me~  I'm a combination mouth cover-er and face dipper.
*David and Goliath skits
*touching your sweethearts face to your forehead
*holding hands
*making sure your siblings know you love them- after all- WE were the ones who used to fight and get the owies...
*calling just to hear your parents voice
*calling just to hear your sweethearts voice ~ even though he only ran to the store a minute ago
*watching the kids wash the car - and themselves - and the driveway- and the  neighbors lawn- and the sidewalk- and the (imagine the print getting smaller and smaller , fading off into the distance)...

To me things that count ~ well, they have always centered around family, but lately have shifted a bit. No more homemade bread.

I'm OK with that.

Dates are not right on these pics, 

I had a possessed camera at the time and it put what ever date it wanted...

Ok, the other people that helped left on a certain date with a certain amount of surety when their stay ended. Poor little Haley didn't have that! She had been going home on some of the weekends, but came back.  The last time she went, that is what we thought was going to happen, but it didn't. It just kind of worked out that we are ok now. SO once again, I could not thank the person (face to face) who had helped our family so very much!!! Grrr.... She will be back when I get my dilation done, but until then,   ~~~

Haley, for all the dishes you did, the trips to the park with four little boys on bikes, the care, patience and love you showed your brothers and for all the stuff I can't even come close to covering in this little space,  Thank you,  (again , the words "thank you" just don't seem to cut it... ) and I love you.

boys first day of school. A bit wiped out, but all in all a good day. Very very happy with the kids' teachers this year.

P.S. Ben's teacher was pretty sure he introduced himself to the class as "Incredible Hulk"...

And I am serious guys, I need help with this pic!! What IS this???!!!

OK, so I went to the ER yesterday to have the feeding tube stitched back in, had a barium swallow and tried to get some I.V. fluids, but my veins kept bursting. (ouch BTW).  I am fine now though. Just tired and a bit bruised.

Cary had the three younger kids with him as he dropped me off and they were able to have a bit of fun while I was in there. On the way to come pick me up, he got a bit of a jolt though. As he was on the corner of 3rd and San Vicente, he heard 2 gunshots fired! He ordered the kids to get down on the floor of the car and he drove like crazy to get out of there! He called 911 to report it, and the operator didn't act like it was a big deal at all!!!  It made for quite the long and repetitive conversation on the way home though. Every kid was very keen on hearing that the policeman would catch the bad guy.

Looks like I will be going in to have my feeding tube stitched back in today. I MAY even have an upper GI done ( a barium swallow) but Dr Soukiasian said it is too early to have a dilation done. Too dangerous he said. We will wait about a month for that one.

4 things today.

#1 Cindi, my sister, you passed up your chance for pranking me, I changed my password to the blog. It is no longer "this sucks" Sorry.

#2 I am SO grateful we have insurance. I am beginning to get the insurance Explanation of Benefits they love to send out, basically stating "this is not a bill" and how much the hospital charged, how much the insurance is paying under their contract and how much I am or am not responsible for.

Cary and I estimated that my medical bills the insurance is paying out is approaching close to a million dollars.

That figure just makes my knees buckle. It actually made me grateful to set up the payments for "our share" .

#3 I popped my last stitch holding my feeding tube in and now it reminds me a bit of a trombone. I have to be extremely careful now as I don't want another trip to the emergency room if it comes out.  It is also looking like I will have to have a dilation to stretch my stomaphagus so I can swallow.

#4 I REALLY need help figuring out what this sign if for. "Poke Lady in Armpit"?  "Apply Deodorant"?  I am perplexed and need closure...

Working through the pains in my back, I think I have not been walking enough. Gotta get those muscles up to speed. I only feel them when I am up and about or sitting in a chair that does not give adequate lumbar support. I also think I need to improve my posture...I slump forward too much when my stomaphagus and innards hurt.

I just liked the bum on the top right...J-Lo got nothing on this guy!

(I do wonder about my strange and convoluted thought patterns ... but only sometimes...)

Still having trouble swallowing, but I have found that if I clench my teeth, I can get down stuff a bit easier, but I am not going to push it. 

Oh my gosh, I just have to blog about the boys skit today. Nothing to do with cancer, it just totally cracked me up.

Since we couldn't go to church today, (my fault) I taught them about David and Goliath, then they took turns filling in the roles of the various characters, King Saul, a soldier, David and of course, Goliath.

The costumes were pulled from the toy room's dress up box, so Goliath resembled more of a pirate, the soldiers armor looked suspiciously like ninja pants and a Nerf dart vest, David looked great in a red bathrobe and a towel fastened around his waist with a church belt, and King Saul's robe looked a bit like Daniels Ringwraith costume from last year.

Ben REALLY wanted to be Goliath first and it was SUCH a crack up! He said his lines standing up on a small chair and saw absolutely nothing funny about it. He ended up still being shorter than "David "(aka Nathan). Don't tell him that though, He delivered his lines with great gusto.

I love being a mom.