On the Moshing Floor

It has been a LOOONG and lame few weeks. I wish I could do something to comfort my son. To stop the progression of his disease. To find a treatment. Ive got nothing. I heard about a free concert in town. FREE. IN TOWN. There were a few bands that I know my son has been listening to and studying. (do you remember doing that? pouring over their lyrics like fine poetry?)

High Flight Society



Ashes Remain




A Rotterdam November


AND......



RUTH

Ive listened to them and approve. I am sooo nosy like that. So I called my husband who was just about due home from working 20 hours...

I quickly grabbed these:



and headed out. Then realized that I was old. So I grabbed this guy. Who is by far the best friend and young man I can think of. Love this kid.

Later in the night, I ran around the floor with my lame camera and snapped pictures of polie kids up REAL CLOSE. They didn't appreciate the flash much. Good times. Thats where this picture came from :)


It didn't occur to me to drop my "child" off. Oh no. There I was standing on the floor realizing that somewhere along the line I have gotten old.



Note,the big Goliath looking guy there. Now, HES old. Ancient. He got off work very late and screeched into town to stand guard behind his sweet daughters and protect them from the Mosh Pit and sweaty, stinky boys. He took a few elbow jabs to the ribs. Man, I wish he were there during my punk show days. At one point, during a slow song, he took out his Iphone with a Zippo lighter application and waved it.
I guffawed VERY VERY loud, even with ear plugs in.

Scleroderma-Good news

When we first got Nate's diagnosis of Sceleroderma we were told we needed to see an oral surgeon. It has only been a short period of time and we have been contacted a few times to make sure that we going to see an oral surgeon. The oral surgeon is not covered by our insurance. I called and asked them why we needed to see them. It is obvious even to me that Nate's *jaw* is crooked and I was told they want to find out the amount of bone loss. We did get skull X-rays that showed no bone loss but this is different. We needed to pay $70 for the consultation and $110 for the X-ray.

We prayed about it and decided to make the appt. and not wait until we really had the money. (that may never happen :) We were given an unexpected $100 the day before th appointment.

We saw Dr. Tyler Wilson, DDS. Great. Great guy. He sat and spent a ton of time with us and he had really done his homework.

Nate's bite is perfect. It is "slanted", what I called "crooked" but both jaw bones are crooked together and his bite isn't effected. WOW.

The Oral surgeon had a reccomendation for surgical implants for Nate's cheek bones. It is "only" cosmetic and we won't look into it right now. At this point, it seems wise to work on any treatments to stop progresssion. Technically, this is an untreatable, progressive auto immune disease. There isnt a known treatment to stop progression. There are a few alternative methods that we are looking into. Although we are concerned about Nate's facial features, Our bigger concern is that this disease can get painful and he could lose use of his mouth and eye.

We have had some comments that the disease must be very quickly progressing because just a few months ago it wasn't noticable. It has actually been going on quite awhile (6-7 years) we just werent able to get a diagnosis. The amazing thing is that the damage really isnt that noticable and you arent aware of it until AFTER it is pointed out :)

Under the Weather or Life Ahead, Ellers Down (A Week in Review)

It has been an odd few days. I feel like we haven't done anything but as I'm thinking it through we actually have. Want in on my thought process? Here we go...

Wednesday- We found out about Nates Scleroderma and spent time talking to other people about it and trying to figure out what to do. At first, I kind of liked the idea of there not being a medical treatment. meaning that we could search out and do what we see fit without refusing anything. But Im beginning to wonder if this will be even harder becasue there is no clear path and no way to pay for it and we may blame ourselves for not treating an "untreatable" disease.

Thursday- Was a Boy Scout court of Honor. Both my boy scouts have outgrown their pants and their patches didnt get sewn on. I stapled them on on our way out the door. A new family just moved into town. I have been wanting to meet the wife, she approached me several times and I said the oddest things. She said, "HI. my name is__________we met at the homeschool meeting last week." I looked at her totally empty and blank and said, 'Did I go to that?" Uh, yeah, apparently I did. She is a sweetheart and kept trying. She eventually asked me a question that I gave a long, honest answer too. That would be "me." She and her husband just moved her and JUST had their sixth baby, by C section. They want to have us over for lunch. I'm excited and beating myself up too.

Friday-We "did" art and Science with friends. My son got a much needed haircut.

Saturday-Hubby worked. My older son worked on a freind's Eagle Scout project. We stumbled upon a firefighter fundraiser.

A freind came by with birhtday cake and presents. Cake did not sound good to us (this may be foreshadowing to future events)

Sunday- Church was wonderful. They are praying for Nate and there were no lame comments. I got a "lead" on a naturopath.

Monday- Josh had breakfast with a friend and felt very encouraged. We spent time talking (we never get a chance to do that) By midday, I cried. ALL day. That night, I felt feverish and really uncomfortable. Our property manager came over to say that "we'd" be getting a new roof between 7 and 8 the next morning.

Tuesday- SIck in bed. SIck SIck. made plans to go somehwere to escape hammering. Couldnt get out of bed.


Wednesday- Still not out of bed. Friend made me a huge, beautiful pot of chicken noodle soup. My husband took our children down to find sand crabs, They also had a seal come to shore.

>Dr. called to say that Nate would be seeing an oral surgeon tomrrow morning at 8:30. Say What? I called and rearranged appt. It seems to be VERY important. Hubby reminded me that we dont have dental insurance.

Thursday-Husband back at work. me still in bed. Intersting day. Turns out the garage had nothing but wood with huge spaces and shingles over it. My husband figured this out in the middle and ran back and forth to the garage with sheets and tarps. The contents of our garage are now covered in a few inches of dirt, grunge, sawdust and nails. I got up and tried to clean a path to do laundry.




My nine year old daughter followed me out there. I think she accomplished more than I did. Friend from homeschool group called and wants to feature our family (and this blog) in the homeschool newsletter. She brought me lunch. FUN stuff :) Our Satelite dish no longer works. I tried to troubelshoot for far too long and the sound of my children sent me back to bed.

Friday-I got up to greet the satelite repair man. Made coffee and did school. Took care of medical paperwork and ran errands. Went by Grandmas to have patches sewn on properly. Visited thrift store and Dollar Tree looking for the Family wall vinyl I read about in bloggy land :). Felt tired. Came home and did more and more laundry then dinner. What am I thinking I should be resting!

Saturday-My husband got called in for an "extra" shift. My older boys went to a leadership meeting with boy Scouts. I had trouble getting out of bed. After our house was trashed beyond recognition and my nine year old near tears I strapped my babies into their carseats and headed out to get coffee and go to yard sales. Did I mention that I ran out of coffee? Didn't help my "get up and go" one bit. We came to a yard sale and my three year old convinced me to let him out of his car seat (first mistake) A few weekends ago (near his birthday) I took him to a yard sale with a TON of kids clothes and a TON of toys. Toys were a $1.00 a bag and clothes 25 cents each. While I sorted through clothes I let him fil a shopping bag with toys. He politely asked before each toy and was so grateful. I kept encouraging him to fill the bag. WELL, I created a monster! This yard sale the toys were 50 cents each and it turns out I had $1.50 in my wallet. Maybe that was actually mistake number ONE. So, there I am with this three year old with no concept or money filling his little arms and hands with toys. I am feeling so tired and should be in bed. Oh what fun.

Sunday- Was wonderful. Church was great. A family from church wants to pay for Nate to see a Dr. that they reccomend. Can we do that? After church, we attended a BBQ picnic with our homeschool support group. GREAT PEOPLE with GREAT KIDS. Fun fun.
A few smiling people that I hadn't met before approached me and said that they had read my blog. I stood there dumbstruck. Again, not good with small talk. I said some pretty lame things. Im not sure what I was feeling. Exposed? No. I dont know. Need to work on a nice polite retort in case this happens again :)Any suggestions? Anyone else had that happen and stood there like a deer caught in headlights?

Im feeling like Im getting nothing done and then again feeling like there is way too much going on in this blog post.. And wondering if anything is worth sharing..hmmmm. I hope I can be an encouragement to others feeling the same way. Im not trying to "do it all" or "have it all" or outdo anyone and some weeks I feel pretty beaten up by life. It is my prayer that I can make good decisions about the care and management of our family and sneak some fun and good memories in there too.........

Scleroderma

>
My 13 year old son, Nate, has had this dark spot on his chin for what seems like forever. He and I have tried to figure it out. Everyone else keeps saying it is "nothing." Nate and I have poked at it and talked about it and tried to figure it out. We have asked other people and have gotten, "it's just a shadow." He has also been getting a little attitude with me and doing this lip snarl thing.

His pediatrician said that she has never seen anything like it in 43 years but she knew who would get to the bottom of it. She made a referal and we went to see him today.

My son has Scleroderma en coup de sabre There is no treatment and the damage that is done is done. The lip snarl is degeneration and shifting. His nose also turns to the side. We have taken X-rays and the damage is *only* muscular not skeletal. (Praise God) the shifting in his back is a scolitoic rotation and seemingly unrealted. God is good.

This is only the beginning of us figuring this all out. While we are sorry to be affected by this disease, we are sooo grateful to learn that it is localized and not systemic, or fatal.

Dining Table? Where are you??

Friends, I need direction.

I have been on a financial roller coaster more than normal. I had a death in the family with a lot of emotions. I was offered a house (paid off) I was offered a new vehicle. I was then offered $10,000. I started thinking and praying about ways to use that money to actually change our day to day struggles. What actually came of it all was $800 (and a silver tea/coffee service:) I am grateful for the money. Very. Im trying to get my mind and all it's plans to calm down and re-adjust.

Then I thought we could get some nice functional furniture for this small space that we are in all day. **We do get out in the fresh air and exercise and we do socialize :)

We are now using a borrowed (for 6+ years) futon that is sooo worn and not really functional. We have a pretty nice dining room table, but it seats 6 with both leaves in and we are now 7. The chairs are very worn and were recovered without cushions as in there needs to be a funky shaped octagon cut out of wood to staple padding to. We dont have the tools to do that. Right now, material is just stretched over the open space. Not really functional or comfortable :) We are renting and the dining room is tiny and wont fit anything bigger. I dont think. We are now eating on carpet. Im wondering how much space we would "gain" by moving the dining room table to the living room and switching things around....there may not be enough room for that and we really do LIVE in this room.


Here is our living room currently. The camera is ON a another wall, flanked in bookcases :) I dont know if I can squeeze anymore space out...

I think you can see in this picture how funky the legs are..You cannot add more chairs. Can you see how small the space is too? hmm....



I saw these at JCPenney.com:


HERE (I can add a leaf and seat 8..in theory) I wonder if I could add a bench for $60.00 too....

I dont normally buy new, but I'm having trouble finding anything used that would fit us on craigslit, the classifieds and yard sales. I fell in absolute LOVE with a table at a furniture store that will "let" me make payments for a year. I cant make payments. There just isnt enough to have "extra." There has to be an obvious design solution, right? Is there an online office furniture place that I could purchase a sturdy table from? Could I have my current chairs recovered by some great go getter for less than new? Can I get anything for under $800. Can I squeeze in a Jcpenney bench and buy my back injured hubby one good comfortable chair and pray for a new rental? Has anyone else dealt with this? What would/did you do?