Latest News

Nephrologist visit

2012-01-23T15:52:00.000-08:00

"A little" freaked out by the 7pm Saturday night from the on-call nephrologist who was worried about the rise in Ben's creatinine. Saw the nephrologist in charge of Ben's care today who calmed us down a bit. We still need to "wait and see." Since I thought this was the month we were supposed to see a marked improvement if the prednisone was working, I'm having a hard time waiting some more while I observe the side effects of the horrible stuff. As long as the side effects aren't "so problematic they become intolerable," the plan is to stay the course for another two months.

One prednisone side effect is today's 154/96 blood pressure. So the HCTZ was changed backed to Lasix. And a second ACE inhibitor was added that may help, but since he is already on one, it may do nothing. If it helps, it might also help reduce the proteinuria. When the kidney is damaged (by FSGS or diabetes or whatever), it can't keep the protein in the blood as it should, and some protein filters into the urine. This causes FURTHER inflammation and scaring. A side effect of these drugs have been to drive Ben's potassium to critical levels.

So counteracting the side effect potentially creates a super dangerous side effect. Back to my photography analogy about it being all about balance. I guess all of life is. Which is why I need naps so my mind can quit racing and rest. Tell Racheal so she doesn't tell me I can't have one!

2012

2012-01-01T20:33:00.000-08:00

So far this year...

Found out Paper Zone where I get all my greeting card supplies is going out of business.
Found out Rach has to take Anatomy and Physiology 242 before applying to the Physical Therapy Assistance program which means the girls won't be moving out this spring. (Hopefully Amanda and I are able to cohabitate that long without bloodshed).
New blisters/rash are popping out on my hands. Treatment: steroid ointment. And my favorite treatment plan...eliminate stress.

None of this should be a big deal but is doesn't take much to through me for a loop when I have GPA and FSGS on my mind. Let me know if you have any solutions or advice for me!

2 Corinthians 4:16-18 ESV

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing us for an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.

Nephrologist visit

2011-12-19T15:29:00.000-08:00

Ben saw his nephrologist today. His creatinine was still 2.6, the same as the level that triggered his biopsy. The doctor did not expect to see any progress at this point so that wasn't a surprise. If the 100mg of prednisone treatment is working, it sounds like we should see improvement in that level next month.

Ben accidently hasn't been taking his full dose of blood pressure medication. It was doubled last month but he only took the new dose for a week. See? He really does need me to fill his weekly pill containers! The containers are the ones labeled AM and FM because he made a mistake and wrote FM instead of PM many years ago and it still makes me smile.

I could tell that Ben was retaining a significant amount of water because his eyelids were swollen! I was happy that the doc told him to double his HCTZ diuretic. Call me paranoid but I'm still nervous about edema causing seizures.

Todd and Ben went to this visit without me so I may or may not get more details.

more FSGS

2011-11-28T19:48:00.000-08:00

Ben saw his nephrologist today who pretty much told us in person what the nurse told us on the phone. That was good because I didn't want the news to get any worse. He said FSGS is not related to GPA but is an immune system issue. I can't find anyone else with the same diagnosis on the support group lists. Only .00003% of the population get GPA...even less are diagnosed as children. So the chances of this dual diagnosis seem really rare.

FSGS treatment brings remission 50% of the time. There is a "reasonable chance" he will respond. The doctor is "hopeful." He chose not to go into the gory details because he didn't want to dash our hope at this point. A problem is that Ben had less kidney function to start with. Another problem is the immune suppression (the very thing that is supposed to help him) and other major side effects from the massive doses of prednisone.

Ben has a list of things to watch for and chores to do (including 24-hour urine collections every two months). We won't know if things are improving for at least two months. Plenty of time for prayer. Especially these long, dark nights. I'll be celebrating when the days start getting longer.

FSGS

2011-11-25T11:53:00.001-08:00

Part of the reason the FSGS dx is so shocking is just last doctor visit the nephrologist said--
Things Look Good.
*Blood pressure is great

*Kidneys are stable

*GPA is asleep

*Cholesterol is controlled

*Blood work fine (aside from deranged calcium and potassium)

*I expect your kidneys to last 50-70 years

Thanksgiving

2011-11-25T11:52:00.000-08:00

Ben and I impressed everyone at our Thanksgiving table with his ability to catch the grapes in his mouth that I tossed across the table.

He also received the ultimate compliment from a friend, "There should be a BEN action figure." I agree!

Biopsy Results

2011-11-22T17:12:00.000-08:00

So...ignorance IS bliss. We found out on Friday that Ben's kidneys have a new disease unrelated to his autoimmune disease. This is called Focal Segmental Glomerulosclerosis (FSGS) and is causing significant inflammation. The doctor started him on 100mg of prednisone and said don't wait until tomorrow to start it. Eerily familiar words.

We don't know much. If the kidney filters become scarred, then they stop doing a good job filtering the blood and protein starts leaking into the urine instead of staying in the blood.

Focal = some
Segmental = sections
Glomerulo = of kidney filters
Sclerosis = are scarred

More at http://www.nephcure.org/fsgs-facts or The Merck Manual

We just know we are super sad and praying for a miracle.

renal biopsy

2011-11-12T09:56:00.000-08:00

Ben laid perfectly still as directed for six hours after his biopsy. Then he hopped up, put on his clothes, started pulling his IV, and rang the nurse to get his discharge happening. He was told to "take it easy" for 72 hours. Even people with sedentary jobs are asked to stay home from work. He left this morning for work...he promised he would only do light duty. More grey hair for me.

The earliest we'll hear results is Wednesday, three weeks at the latest. I used to want to name the monster. Now I'm going with ignorance is bliss.

Kidney Biopsy Tomorrow

2011-11-10T21:21:00.000-08:00

Ben's nephrologist is taking his jump in creatinine so seriously that after Ben's 4:45pm appointment today, he scheduled a 6:30am kidney biopsy tomorrow. He suspects a flare as there is no other obvious reason for such a dramatic decline in kidney function. Everything the doc said is on track with what we know from Children's. Ben had only seen him twice since switching to adult care.

Assuming Ben has no complications from the biopsy, it will be an all day outpatient procedure. Then two more days of rest. Then five days of lifting less than 10 pounds. After a week he can lift 50 pounds. I pray his boss is understanding.

On Monday, he was scheduled to see his ENT for a routine visit so the timing to check is nose for flare symptoms is perfect. Hopefully a sinus biopsy won't be necessary.

Confirmed

2011-11-07T21:26:00.001-08:00

Ben's creatinine level was confirmed so he will see the doctor Thursday to find out more.

A dream come true!

2011-11-03T17:17:00.001-07:00

Ben told me he's always wanted to do this.

Fall

2011-10-25T18:05:00.001-07:00

Mom is doing great. The way the brain can heal is an amazing thing.

Ben had a sinus surgery in the spring to remove scar tissue and improve drainage. He looked pretty awful after that but insisted that he go to his own house so he could go to class in the morning. He did, but the teacher sent him home.

We celebrated Ben's graduation with his fisheries class at Bellingham Tech without embarrassing him with too many tears. Ben would probably tell you that the highlight of his year was being drawn for a big bull elk permit in the Naches area. He is there right now.

That is a bit of a problem for his dear old mom's heart because his blood work came back and his creatinine took a giant leap which puts his renal failure from stage 3 to stage 4....a decline from about 60% function to 30%.

The nurse said he could wait until he gets back from his trip to be retested. If it is a chronic decline, there isn't anything to be done. If it is a flare, well, we know what needs to be done and it isn't pretty. And I'm praying for the third option. That the level will be back to his baseline when it is retested.

A bad day

2011-03-01T17:17:00.000-08:00

My best support person, my mom, suffered a stroke at Feb 18. She can only communicate with yes and no nods. She wants to talk but she just can't get the thoughts to form words. Not sure of swallowing or mobility yet. Probably caused by atrial fibrillation. My dad is by her side but he isn't a patient nurse. Wish I could look a year down the road. Crying and stress makes me literally gag so I'm just a joy to be around.

Feb 28 Trying to juggle everything here. My mom is doing amazing. Seems the tPA worked it's miracle. Her biggest problem is expressive aphasia. She starts speech therapy today. But I can't go because I am going to see what the ENT is concerned about with Ben (after seeing his CT scan).

Feb 11

2011-03-01T17:16:00.000-08:00

Counting my blessings. Yesterday Ben turned 20. Every day of the last 7.5 years a gift after several close calls. Today I got word that the fishing boat my 21 year old nephew was working on sank in AK. He was rescued and is fine. What does the Lord have planned for these boys?

Sinus Surgery Scheduled

2011-03-01T17:14:00.000-08:00

In January we went to Northgate to meet a new (insurance approved) ENT. Last time we met a new ENT it was a disaster. We liked him! But he did a CT scan and decided that Ben needs to have sinus surgery soon. I liked it that he said "you and me are going to be good friends for a long time."

labs

2011-03-01T17:13:00.001-08:00

Ben's lab results didn't show up today like I expected. Todd called (they assume he is Ben) the lab and they said they faxed the report on the Dec 30th. Well, that is funny since he had blood drawn on Dec 31st! They resent the results and his creatinine is 1.9 (down from 2.5 when he was apparently dehydrated from the lasix). AND his potassium was below 5! YAY

griping

2011-03-01T17:12:00.001-08:00

My current gripe is Ben is supposed to switch bp medication. After waiting a week to get it from the mail order pharmacy, it came today. A 15 day supply instead of a 90 day supply for the 90 day supply price. Plus he was supposed to get labs tested Saturday because of the high potatssium, but the weekend nephrologist on call never faxed the orders. Thanks for listening...I almost feel better already .

Rheum nurse

2011-03-01T17:11:00.001-08:00

Ben saw his nephrologist last week. He was scheduled to see his rheum 5 days later. He called the rheum who said he didn't HAVE to see Ben if Ben would just get a blood draw. We faxed in the Children's lab results. Today the rheum nurse called Todd (we have no idea why they think that is the primary contact number because we've told them it isn't) and chewed him out because the rheum cannot take care of Ben if he doesn't see him. Then she called back and apologized.

Still working on high potassium

2010-12-29T15:34:00.000-08:00

Ben changed meds while he was home for Christmas, and he probably should have gone in for IV rehydration. I'm out of practice and didn't realize how dry he was. We should have done those orthostatic blood pressures. I'm sure he would have begged to have "medicinal Mountain Dew" to raise his blood pressure and hydrate himself. So he just didn't tell me how bad it was. The labs showed a significant increase in creatinine (hopefully due to dehydration) so they took him off the lasix. Then they decided to cut the new blood pressure med in half and continue to take half the lasix. New labs tomorrow will tell us if this is working (assuming Ben remembers to have them drawn).

It is not a good time to be looking for a new nephrologist but the deadline is looming. He has an appointment with the new otolaryngologist in two weeks. The clinic is in the Northgate area.

Potassium

2010-12-11T11:03:00.000-08:00

The nephrology nurse got back to me from home on a Saturday. What a great person! She is one of two people who have been with us on this journey since the beginning. She said not to be overly concerned unless Ben's potassium level is 6 or over.

The rheumatologist starts to panic at 5.6. Good to know this differentiation so we know when to panic.

This permanent dietary restriction is really hard for my meat-and-potatoes son.

Potassium...again

2010-12-10T22:27:00.000-08:00

The nurse emailed Ben's labs but didn't say she was worried about his potassium level which is critical. When does this "always" happen on a Friday night? Did the doc notice the level and decide it is not big deal? Because they have sent him to the ER over this a couple times, but it was a false alarm. His level has always been lower after the rush (and cost) to recheck the labs.

I called Ben to tell him to eat NO high potassium foods until he can have his labs redone which was supposed to happen Monday anyway. His roommate called his mother who is a nurse. She called me to find out more. Todd called Children's nephrologist on call who offered to give Ben a kayexalate prescription but then withdrew the offer after he asked to have Ben's labs rechecked first.

Not sure how much to panic. Seems the best advice at this point is to have Ben drink lots of water to avoid dehydration. And pray. And call 911 if he feels lightheaded or a weird heartbeat. I would feel better if he would let me come up and sleep on his floor.

What???

2010-12-01T18:59:00.001-08:00

After trying to get an appointment at the University of Washington Medical Center ENT clinic since July, they just called today and said they do not accept our insurance! Which means he can't go to the nephrologist there either. Super frustrating. I'm pretty sure he won't go to a vasculitis clinic so it looks like Everett Clinic it is....for now.

Children's Hospital Check Up

2010-12-01T12:20:00.000-08:00

It was a productive visit at Children's today. After seeing the nephrologist and getting his blood draw, Ben got his flu shot, his medical records forwarded to University of Washington Medical Center, an x-ray of his hand, and an echo cardiogram. His blood pressure had crept up so there is a med change there. We have to wait to hear about the blood. His hand was broken in two places. I'm pretty sure Daryl thinks he deserved it. No more breaking down cardboard boxes without a knife.

Bovine Myology

2010-11-02T14:02:00.000-07:00

Bovine Myology

What every home butcher always wanted!

Hatchery Manager

2010-10-21T19:50:00.000-07:00

I don't know what all it entails but Ben is the manager of the Whatcom Creek Hatchery until June. That will beef up his resume!

Happy September

2010-09-14T16:54:00.000-07:00

You are in my bubble!

2010-09-10T08:08:00.000-07:00

Ben reminded me about this time last year when he first started the fisheries program. He was in a walking circles in a holding pond catching fish with a net. This huge Indian fellow kept getting closer and closer to him. Finally, just as Ben is ready to tell him to back off, the guy takes a big sniff and asks, "What kind of laundry soap do you use?"

And that reminds me of when Atticus was spending the night once when he and Ben were around 13 years old. They could tell I needed a break (or they were trying to bribe me for reason) so they made me a spa. It was complete with a facial, relaxing music, a movie, and a gourmet feast. The highlight was French Breakfast Puff muffins.

Later that night I could hear them giggling while on the futon in the living room. These were pre-voice change, high pictched giggles. I'm smiling right along with them. The giggles subsided, and I heard them talking about the sweet, moist muffins. Then Atticus said in all seriousness, "I just HAVE to get that recipe." It still makes me laugh to this day.

Farmer's Tan

2010-08-26T19:15:00.000-07:00

Ben went swimming last night. He was walking out the dock when some guy saw his farmer's tan and said "Holy shit! I thought you had a white shirt on!"

More Cozaar

2010-07-29T12:04:00.000-07:00

Since taking away the enalapril due to potassium issues, Ben's blood pressure has crept up as has his proteinuria. So his nephrologist is increasing his Cozaar/losartan. Not a big change but a reminder that things aren't always as good as they look.

Finally! A Primary Care Provider!

2010-07-20T11:33:00.000-07:00

Ben and I went to meet Dr. Dilworth at the Everett Clinic yesterday. You know that problem Ben was having getting antibiotics? He left with a prescription and 6 refills! And the doc said he can do most everything over the phone as long as it hasn't been over a year since he last saw Ben.

Dr. Dilworth read the Ev Clinic Rheumatologist's file (summary from Children's, recent labs, etc.) and understood the rarity and seriousness of WG and was impressed with how well Ben looks...farmer tan and all.

He suggested that Ben carry around his most recent labs in case of an ER visit so no one accidental OD's him mistakenly thinking his innards are as healthy as he looks on the outside.

Finding a PCP that does not need to be educated about WG is such a gigantic relief, someone who is informed to share the burden of decision making. He has a sense of humor, great bedside manner, knowledge, empathy... My impression is that he would be calm and caring during a crisis; I hope I never need to find out.

Now to meet the guys at the University of Washington medical center.

Potential Docs

2010-07-08T13:46:00.001-07:00

Dr. Greg Davis UWMC Otolaryngology

Dr. J Ashley Jefferson UWMC Nephrology

ENT & Neph appointments

2010-07-08T13:01:00.000-07:00

All good news. Daryl (nephrology) wanted to see Ben again so soon after getting rid of his Enalapril (ACE inhibitor) which was helping with proteinuria and hypertension but causing hyperkalemia (high potassium). The labs that came back are stable. Daryl is happy continue to see Ben as long as possible, but recommended a colleague at the University of Washington for us to check out.

Dr. Manning (otolarygologist) said every as long as Ben is asymptomatic there is no reason to dig around in his sinuses. He didn't say that the other doc overreacted. But he did say that they are personal friends and that they discussed WG on the porch over a beer the other night and the other doc should be up to speed now. Dr. Manning gave us the name of an otolarygologist also at UW who studied under the top sinus man in the world.

So after meeting the new primary at the Everett Clinic in a few weeks, the next step will be to meet the new otolarygologist. It just isn't going to work to have all the specialists come from the same place unless it is UW.

A special note...make sure your driver's license photo isn't hideous. When you go to Children's now you have to check in and wear a badge before you even register for an appointment or try to visit someone. Children's is connected to the DOL data base and will put the photo on a badge for public viewing.

My son the champion

2010-06-06T14:55:00.000-07:00

I am so proud of my son. At the college's end of the year picnic Ben not only dumped ice water on the dean of students (thinking he was a student), he represented the Fisheries program in the tricycle race and won.

He has been home most weekends so I haven't had the opportunity to visit his place since he moved in. Now his weekends are cut short by working Saturdays. I went up on Friday for a visit. We had a nice time. A trip to Costco, a tour of town, a guided tour of the hatchery, and great teriyaki. But he should buy some toilet paper and hire a maid.

Cenex

2010-05-30T18:23:00.001-07:00

Ben has an after school job! And one that is not controlled by the state budget like his work study was. He starts Tuesday. YAY!

2010-05-04T20:07:00.000-07:00

Ben took a friend along with our truck and boat for a weekend of fishing east of the mountains. His financial aid and work study were cut so it is time to polish that resume again.

All is Well

2010-03-31T19:57:00.000-07:00

Ben's potassium is normal now. Whew. He has scheduled to meet a new ENT at the Everett Clinic to try to get the antibiotic problem taken care of (his primary care provider doesn't want him to become resistant). And he plans to switch primary care providers but needs to decide if to go to the Everett Clinic or Bellingham. So far he still won't let me book him at the vasculitis center in Salt Lake City.

2010-03-17T15:50:00.000-07:00

Ben's potassium is 6 today. He has to stop taking one of his blood pressure meds that also protects his kidneys and start Kayexalate to try to reduce the potassium. I want to be with him watching for side effects and monitoring his blood pressure. But I can't.

Otherwise his nephrologist was very happy with Ben's overall health. He is fit, 15 pounds lighter since moving away from home. That might help reduce his cholesterol.

Amanda is driving her Blazer now. But I just got a call, "Tell Dad to come get me." Her first solo breakdown.

The Scout

2010-03-07T12:21:00.001-08:00

Ben told me that a guy in a Lexus had his checkbook out wanting to buy the Scout on the spot!

Mt. Baker

2010-03-03T15:54:00.000-08:00

Ben went on an overnight hike in the snow last weekend at Artist Point on Mt. Baker. I heard they had a good time and home someone took pictures.

Wegener's or Vasculitis?

2010-01-22T13:43:00.001-08:00

One interesting reason Wegener's Granulomatosis is now called vasculitis.

Ben's Theme Song

2010-01-18T13:04:00.000-08:00

Ben's Theme Song

Why didn't we know this???

2010-01-10T18:09:00.000-08:00

From http://www.yourhealthbase.com/database/a86d.htm

ROCHESTER, MINNESOTA. Water softeners are used to soften hard water (water containing relatively large amounts of calcium and magnesium). Hard water is generally healthy to drink, but can cause difficulties in laundry and dishwashers. Water softeners work by exchanging the calcium and magnesium ions in the water with sodium or potassium ions. Depending on the hardness of the inflow water the treated water can end up containing significant amounts of sodium or potassium. Although softened water was not originally meant for human consumption many people now use water softeners to clean up their water and then use it for both drinking and cleaning purposes.

Dr. John Graves, MD at the Mayo Clinic describes a recent case where a 78-year-old man with hypertension and diabetes suffered acute renal failure and hyperkalemia (abnormally high blood level of potassium) shortly after starting to drink large quantities (3 to 4 liters/day) of water, which had been treated in a potassium-based water softener. One of the reasons why the patient was drinking this water was that he thought it would help his hypertension. Dr. Graves estimates that the man consumed about 1000 mg (21-28 millimol) of potassium a day from water alone. Dr. Graves concluded that this extra intake of potassium was a major cause of the renal failure and suggests that patients with kidney disease, diabetes or hypertension be warned against drinking water treated in potassium-based water softeners.

Graves, John W. Hyperkalemia due to a potassium-based water softener. New England Journal of Medicine, Vol. 339, December 10, 1998, pp. 1790-91 (letter to the editor)

Potassium

2009-12-22T06:28:00.001-08:00

Ben's potassium level is critical again. There are two meds that can increase potassium. The rheumatologist wants the primary doc to adjust the medicine. She wants to adjust the medicine. But the nephrologist, the ones most worried about preserving kidney function, thinks it would be a mistake. The meds decrease the protein in his urine. If there is protein it damages the kidneys to the point of needing a transplant (like diabetic kidneys).

He also has a cold/flu. The first time he's needed antibiotics since July. His rheumatologist emphasized at this last visit that he DOES NOT want Ben to get an infection or irritated nose. He's been having nose bleeds (classic WG symptom). But the rheum thinks his nose is just dry, and Ben needs to use gel.

Researching potatssium led to this excellent Nutrient Data site.

3 Fish Carry...again

2009-11-27T14:57:00.001-08:00

I found out that the other link for the 3 Fish Carry wasn't reliable so here is one from you tube. Earl is going for a record of carrying 8 fish this year. Three Fish Carry

You can also check out Ben and his classmates at the Fisheries website.

Alvins

2009-11-22T14:56:00.001-08:00

The power went out in Bellingham and there were generator problems at the hatchery...and the person on the night shift was asleep...so the fisheries program lost about half of their eggs. But they were beyond the egg stage and to the alvin stage. I'll have to ask Ben what that means exactly. He is doing LOTS of guard duty at night and has chased off some bums and poachers and even found a gill net in the creek.

Success

2009-11-08T17:18:00.000-08:00

Todd, Ben, Ron and John

Elk Hunt 2009

Elk

2009-11-01T14:10:00.001-08:00

Ben left a message yesterday saying he and Todd both got spikes. I was up in Bellingham paying his rent. At least he remembered before it was over due. We are happy they got elk but our first thought was...does this mean they are coming home early??? =(

Ben's Apartment

2009-10-25T11:39:00.000-07:00

I am told not only does Ben have the best table, he has the nicest smelling house. That is thanks to the apple pie candle from Wal-Mart. I also found out he is holding a grudge since he was 5 and I wouldn't let him have the Morning Thunder Celestial Tea. Guess I know what to get him for Christmas!

Hunting Season

2009-10-17T12:56:00.000-07:00

Red and gold falling leaves. Black and red checkered shirts. A dark, gloomy sky. Sabot slugs and shot guns. Todd and Ben are enjoying opening day of deer season. They've come home once to change out of their soaked clothes.

Ben told me that the place of choice for hanging out in Bellingham is between his place with the best table and his buddy's house that has cable TV. Sounds like they play poker and cribbage. He is still loving his program; the teacher is a joker and that is perfect for Ben. His job at teh college with the grounds department is going good. His student loan check should be available soon. And he is enjoying security duty at the hatchery. He is even going to get to go elk hunting for part of the season.

My data entry hours were cut back again to the point that it isn't really a job anymore. I'm looking for something that I can do and keep my job with the college. Amanda and I are together day and night and still doing ok. I think knowing that it will end in January helps us enjoy our time together now.

Phones

2009-10-03T21:56:00.000-07:00

I think Ben is going for the world record book on broken phones. Mostly he gets them wet. He is going to try to put this one in some rice to dry it out because it only got damp. I think this one lasted a month. He had one that lasted about 5 days. Maybe he needs to stick with a land line?

He said he "had" to buy a fishing pole today so he could go fishing. He went with another fisheries student and they caught some big fish.

WDFW

2009-09-24T14:16:00.000-07:00

Ben took a class last night to learn how to spot poaching. I understood him to say it is required if he wants to volunteer with the Department of Fish and Wildlife.

Roller Coaster

2009-09-23T10:16:00.000-07:00

Ben seems to love everything about his program except the hour lunch. What do you do with the remaining 55 minutes after you eat your sandwich? Sounds like he is getting to know a variety of people. There is even a 70 year old woman in class.

He told us that the spawned salmon go to the food bank. He is excited about night time security duty at the hatchery while there are fish in the ponds. He wants the 2-7am shift. I am SO happy that Ben is happy. I must have missed the training on easy transitions because this spring and summer were super rough.

The dip of the roller coaster ride is my data entry hours got cut. So I am looking for work with a half an eye. The only decent opportunities I've seen so far are graveyard shift or commuting. Since Amanda has had to grow up so fast already, neither of those seem to be a good option. Let me know if you hear of any great opportunities.

He's in!

2009-09-21T15:59:00.000-07:00

Ben met with the grounds department and has his job as soon as he provides human resources with his birth certificate and SSN. YAY. He will be working 2 hours a day after class. The supervisor is going to work it so Ben can get his get his time in even though the department closes before his time is up.

Orientation was good. They went through a bunch of computer accounts stuff that was helpful and had a good lunch.

Class officially starts tomorrow. He is happy that his existing waders will work and he gets to spawn 1000 fish this week!

Ben's Apartment

2009-09-19T14:57:00.001-07:00

Grounds Department Work Study

2009-09-18T18:55:00.000-07:00

Thanks to career counselor Meagan at Bellingham Tech who whisked Ben down the hallway to the financial aid office when he actually went in to the college to set up a mock job interview, Ben is super close to having a position with the grounds department at the college.

He still needs to meet with the grounds supervisor Monday afternoon, but he signed the work study paperwork and should be all set. The money is not taken from his loan amount as we were told but will be in addition to his loans. YAY!

The financial aid person seems nice as well but told us Ben was 12th on the work study list and could not qualify this quarter. I'm not sure how Meagan got it to work. She also signed him up for college orientation. She is very sweet and persuasive.

Nephrology Visit

2009-09-16T16:35:00.000-07:00

Todd and Ben went to see Dr Darryl today. He repeated what Dr. Emery said a while ago...most people with WG have relapsed by now (6 years after DX) and that Ben might be "one of the lucky ones" that has a long lasting remission.

Darryl thought Ben looked great physically and his blood work was stable. He is taking him off Calcitriol. It is too soon to check his cholesterol after switching to a different statin. I hope he didn't say just keep doing whatever his is doing because he needs to stop fishing and get to school!

No Work Study

2009-09-12T09:03:00.001-07:00

Ben's work study fell through, something to do with limited state funds allotted to the college. So...back to pounding the pavement. This time he has a "combined resume" which is supposed to be the most eye catching.

3 Fish Carry

2009-09-03T10:43:00.000-07:00

This is Fisheries teacher Earl Steele demonstrating what Ben will learn in college.

See it live at: http://fisheries.btc.ctc.edu/Podcasts/Fish%20Carry/ChumCarry.mp4

Work Study

2009-09-01T22:07:00.000-07:00

Ben met with the career counselor at his school who gave him a lot of job searching tips, sympathy because of the limited job market, and great advice on setting up a work study position. Next Ben met with the Fisheries program director who was happy to have him in a position.

Then he met with the financial aid people where we were told with a work study, the financial aid department deducts the amount you earn from the amount you qualified to borrow as a student loan. So you don't have more to live on, but you have less to pay back. Now we "wait and see" if it works out.

Ben also got his student ID picture taken. He was worse than a little baby at Sears. Ask him if you can see it.

The following link should take you to an online presentation about the Fisheries program: http://mmbreeze.btc.ctc.edu/p64711696/

Financial Aid

2009-08-29T19:13:00.000-07:00

Ben's financial aid packet arrived. Between grants, loans, and a part-time job, I think he can do it. YAY!

Salmon Derby

2009-08-29T19:05:00.000-07:00

Today was our Ace Hardware's first Pink Salmon Derby. Great prizes for 1st, 2nd, and 3rd place. Todd and Ben went out with our neighbor Ken. They had engine problems in our boat. So they took out one of Ken's boats. First they swamped it. Then once they got it out in the water they discovered it leaked! I understand there was a LOT of laughing going on. After all that, Ben's fish was tied for third place until the last fish was weighed. The last fish weighed was two hundredths of a pound more.

The Bite is ON!

2009-08-25T22:52:00.000-07:00

Ben has another load of salmon in brine. I'm trying to tell him that canning it is as hard as catching it, and we should split the finished product 50/50.

He put in a bunch of application$ today and will to talk to the career coun$elor at Bellingham Tech next week who will help him hone his job $earch. No $urpri$e that "no one" is accepting application$. $till waiting to find out about financial aid. Trying not to worry too much and just keep plugging away. Ea$ier $aid than done.

His docs are worried that his statin isn't fixing his high risk cholesterol problems and are discussing switching to something else. Plus they are asking him to exercise more and eat less fat since his HDL is half of what it needs to be and his ratio is backwards. I guess reeling in fish doesn't count as aerobic exercise. His BUN (24) and creatinine (1.6) are high but steady. His potassium was right on the verge of critical again (5.0). Even though this stuff going on inside, he looks great. And since there have been lots of fish, there have been lots of smiles.

Ben and the Cops

2009-08-21T10:38:00.000-07:00

Ben got pulled over AGAIN last night. It seems to happen about every four months. This time the officer told Ben he needed mud flaps, he couldn't see the tabs, and the license plate lights were too bright! This is after installing the lights because the last officer complained that he didn't have any. I'm pretty sure they weren't stock in '62 when the thing was made.

Sounds like they had a nice long chat. The officer even mentioned seeing him and the Scout on TV. Hmmm...maybe that was the real reason he pulled him over? Just to check shake hands with a local celebrity?

Ben on KING 5 TV News Aug. 19

2009-08-19T20:07:00.001-07:00

Ben and Josh discuss deer population on Whidbey Island.

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Something New

2009-08-15T15:58:00.000-07:00

Time to gather things into a central location which means moving the blog here. If you are looking for 'Old News,' it is located at our website under Ben's WG DX or click one of the years below to see a pdf file of journal entries.

2003 2004 2005 2006 2007 2008 2009