Relay for Life 2014

This year Relay for Life was held out in Nibley at the Heritage Park.  I wasn't too sure about the venue at first, but I ended up really liking it.  I hope they do it there again!

Travis actually got to go on stage this year and play guitar.  He had an entire hour to set up, play and take down.  His mom and dad and Jamie came out to listen/watch him.  He did a really good job too.

My sister did some face painting as a fundraiser.  My kids loved it.

 Samantha performed with her dance group again this year.  They did all their dances they learned in the summer session.

More face painting photos

Final lap

It was nice to not be in charge of the silent auction this year.  I was a bit worried when I saw how high some of the minimum bids were.  I found out later that all but one item sold so I was happy to hear that.  It seemed like there were fewer items than what there has been in the past but it could have just been the way it was set up.

Our total $ number at the end of the event (not including the silent auction money) was just over $64,000.  I was disappointed to hear that.  Granted, $64K is still a lot of money, and we can turn money in until the end of the calendar year, BUT we've never had a number that low in the entire six years I've been doing Relay.  In fact, we've never done less than $90K as a final total.  I sure hope our numbers go up.  I can't figure out why our numbers were so low because according to our chair, we were on target all year long.  Plus, I know that my team did more money on site than we have EVER done.  We did over $300 in fundraising on site.  We never do more than about $50 and because of that we almost didn't take anything up there with us.  I'm glad we did!  I've already said I will help again next year.  I'd prefer not to do Sponsorship but now that I've done it 3 yrs in a row, it's a bit easy to do it.  It's really just a matter of making time to go out and make the contacts face to face instead of over the phone.  Mom and I have already started formulating ideas on how to improve our fundraising totals for next year.  Our team has done $838.30 and we still have another $150 to turn in so we will be sitting at $988.30.  That's not too bad since my team goal was $1,000 and it's generally (not always) just me doing the fundraising efforts.  I did like that Sam and Nash got in on the fundraising efforts this year.  Sam raised about $70 and Nash raised about $65 just by going to the teachers and staff at their school and asking if they'd like to donate.  I think it helped that they made it a competition between themselves too :)

Here's to next year!

4th of July

We had quite the busy Fourth of July weekend!  For the first time in quite a long time our dad was home for the holiday!  On the 3rd Sam was to perform at the stadium fireworks at the Romney Stadium.  We usually go to the fireworks at the stadium but we don't usually go up until about 8-8:30.  Sam had to be there at 5:30 and they were dancing right at 8 so we decided to head up when the gates opened at 7.  We took the other kids to Grandpa Scott & Grandma Kris's house and had dinner first and then headed to the stadium at 7.  We managed to get a good parking spot in the stadium without having to pay but I'm not sure it was worth the 45 minute wait to get out of the parking lot afterwards!  It was a good thing we left when we did because she really did dance right at 8!

 She did a great job and it was fun to watch her.  It was a long time for the other kids to be at the stadium though, that's for sure!  I think I prefer going up at 8 pm instead!

On the Fourth we went down and watched the Hyrum parade (despite knowing better).  I will say this year was better than last year because the parade was only about an hr to an hr and a half long rather than two and a half hours long.  The kids got more candy than usual too, so that was nice for them.

After the parade Trav's brother and his family came over to our place for a bit.  The boys decided they were going to call Grandpa Scott and Grandma Kris and ask if we could take the jet ski's out to Benson to play.  So, a few hours later we ended up out at Benson and stayed there until dark.  The kids had a great time.  Nash got up on his feet on the little jet ski for the first time too.

We even managed to not get too sunburned!

Mom's Allergy Test

So I had my allergy test scheduled for July 9th.  I finished all the steroid that Lindsey gave me about 5-6 days prior to my appt.  I really didn't think anything of it because it wasn't one of the medications that's listed on the paper they give you of medications not to take prior to testing.  Thus the saga begins....

I ended up being 15 minutes late for my appt because I woke up to a nearly flat tire.  Awesome.  I picked up my brother to take him to work and filled my tire up with air at my dad's shop.  I figured I'd just go in and get it looked at after my appt.  Um...no.  After I fill it up I can hear the air coming out of it.  Not awesome.  I dropped my brother off at work and headed straight for Les Schwab.  I was hoping it would be a quick 20 minute fix seeing as it was already 8:30 and my appt was at 9 in North Logan.  Turns out, it was not a quick anything fix.  I didn't leave Les Schwab until about 9.  Luckily it was only a rock that created a hole in my tire and they were able to at least fix it.

I made it almost to the allergy clinic when they called to tell me that if I wasn't there by 9:30 I was going to have to reschedule.  I had called at 8:50 and left a msg with one of the receptionists at the ENT's office (they run the allergy clinic too) about what was going on and she said she'd let them know.  Fortunately for me, I was just down the street at this point.  I finally get there and get in and they get the test started.  I was lucky, they used my forearms for the test rather than my back like they do on the kids.  About 10 minutes after they poke me a nurse comes in to do my controls.  She does the controls up on my right arm and says she'll be back in 10 minutes.  Meanwhile I'm waiting for my arms to start breaking out like mad because my right arm is starting to itch.  After 10 more minutes goes by the nurse comes back in and says, "Well that's weird.  You're reacting to one you aren't suppose to.  Let's do this again."  Thus I get the control shots (3) a second time.  Another 10 minutes goes by and she comes back to....surprise...the same results.  She decides that the 3rd time's the charm and does the controls yet again.  Another 10 minutes goes by and the same result.  She gets another nurse to come in and look at it.  She asks me "Why do you have to be so difficult?!"  I just look at her and said, "Well, you've met my kids, right?"  She laughed and said "Oh yea."  They decide to stick me with a rye and a grass and come back 10 minutes later.  The grass was about the size of a nickel and the rye wasn't too little either.  The poor girls are stumped as to why I"m having the reaction that I am having.  Sonya asks me if I've quit all the meds I"m suppose to and if I ate any of the foods I'm not suppose to.  I tell her yes and no.  She asks if there are any other meds I've taken like steroids.  I tell her that I finished  my steroids about Thursday or Friday of the week prior (it's Monday).  She looks at me and says, "Oh that is still in your system.  This test isn't valid.  You're going to have to come back and do this all over again!"  Crap.

For this test I had reacted to grass, sagebrush, a little bit to Box Elder and a little bit to Malt.  My grass reaction was very, very large.  Sonya told me she thinks I'm going to be super allergic when I do this test again because the steroid was masking my reaction.  Awesome.

So, I've rescheduled for August 5th.  Here's to hoping that I have a good end result

Mom's turn at the ENT

Last week I ventured in to see Dr. Blotter about myself.  It started shortly after Brooke had her prick test done.  I was talking to Travis on the phone one night and he had googled "What can I eat if I have a milk allergy."  Being a smart alec, I told him he should have googled "What can I eat if I have a corn allergy?" because that was what she reacted to the most.  So, being who he is, he did it.  He found this article: http://www.cornallergens.com/symptoms/corn-allergy-symptoms-history.php   It's a blog post that describes one woman's journey to learn she had a corn allergy.  Growing up she was diagnosed with multiple different medical issues.  Later in life she found out she had a corn allergy.  Once she eliminated corn, all her problems went away.  Travis told me he thought it sounded like me and that I should go get allergy tested.  I think it sounds like my dad too.  So, hence the reason I went to visit our beloved Dr. Blotter.

Anyway, I explained all of this to Dr. Blotter.  As he listened I could tell he didn't think I was completely insane.  He actually jokingly made the comment, "Ah, the matriarch of the family.  I've had my suspicions for years!"  After I finished telling him all of this he looks in my ears, throat, etc.  He was surprised to see I still have my tonsils.  He mentioned that they were large and "grainy looking."  He proceeded to tell me that the bacteria that causes strep can have rheumatilogical consequences (like rheumatic fever) that can actually present as arthritis like symptoms.  He said he doesn't want to just go in and take out my tonsils because I'm an adult and it's a rough recovery for an adult.  His theory is that he would give me a prescription that would kill any strep like bacteria to see if it improved my arthritis symptoms at all.  Since I"m allergic to penicillin, I got Bactrim (aka Septra).  I was suppose to take this prescription twice a day for ten days.  Before I left the dr.'s office I went over to the allergy clinic to schedule my prick test.  They couldn't get me in until July 9th so that's what I took.  In discussing all the allergy testing options with Dr. Blotter he told me that if I want to really be certain of allergies I need to have RAST testing done as well.  RAST testing is just blood work that tests for elevated levels of particular allergens.  Once I got the call from the dr.'s office telling my my insurance would cover all the allergy testing I went and got the blood work done.  That RAST testing, came back completely negative.  That means there were no elevated levels of any of the allergens that were tested for (all the food allergies and a few of the tree/grass/pollen ones).  I'm still scheduled for my prick test on July 9th.

I began taking the Septra on June 16th.  Since I didn't take any until that evening, I only got one dose that day.  It was Tuesday that I started my twice a day doses.  I noticed Tuesday evening/Wednesday morning that I was having pain in my feet and hands.  I was getting pain across the bottom of my toes and on the balls of my feet.  Behind my knees it felt like when I would extend my legs that a tendon was being pulled down into my calf.  My hands were horrendous.  My left thumb on the top - not necessarily in the joint but at the joint points.  Also the left pointer finger.  When either of those fingers moved pain would shoot down into my wrist.  But it wasn't into the center of my wrist, it was the inside and outside of my wrist.  On my right hand it was my ring and pinkie fingers.  If I tried to open my fingers to lay my hand flat it felt as though a string was attached to the tips of my fingers and it was trying to rip the muscle below all of my fingers up and off.  Each day got progressively worse and worse.  By Sunday it had hit my knees.  Not my entire knees though.  Just the inside of both my knees.  It's also been affecting my shoulders and my right shoulder blade area.  I've been telling Travis since about Wednesday that I either needed a lead pill or a mega dose of narcotics.  I've been trying not to take Aleve because that's one of the drugs you have to give up five days prior to your prick test.  I can take Tylenol though.  Tylenol arthritis hasn't touched it.  I had my mom drive me to Walmart on Sunday and I got some extra strength Tylenol.  It has helped a smidge more than the Tylenol arthritis, but that's about it.

I have quite literally spent the entire last week mostly in bed and sleeping.  This is highly uncharacteristic of me.  I can't even sit and watch tv without something to do with my hands.  I've been trying to get my "spring" cleaning finished and Relay stuff wrapped up.  This has put a serious kink in my day to day operations.  I have not been able to life B (or much of anything else) because when I do it feels as though my thumbs are going to be ripped completely off my hand.  What's worse is that after I lay down and fall asleep I'll sleep for like 4+ hrs at a time.  When I wake up I don't even move before I have a "Dear Lord how have I been sleeping!" sort of response.  Trying to move any muscles at all nearly puts me in tears.  My feet feel as though they did when I was pregnant with Caleb (stuffed sausages that are going to split open if I put any pressure on them).  It's all I can do to actually sit up.  Standing up and getting dressed has been rather painful and almost impossible.  Stairs?  Um, no - just no.  I probably should not have legally been driving today either.

On Sunday I was talking to my mom and she told me to call the dr. on call and see what they said.  I called and talked to Dr. Wood (not my regular ENT - obviously - and not my preferred choice but beggars can't be choosers at this point.  I told him what was going on and why I was on the medicine.  He asked if I had a rash.  I told him no rash.  He said that as long as I don't have a rash I"m good because the rash is what they are the most concerned with.  He did say that it sounded like it was likely a reaction to the Septra and to go ahead and quit taking it and follow up with Dr. Blotter on Monday.

On Sunday night I was literally in tears from the pain.  I finally decided to get into a hot bath because that's what helps the most when my arthritis is kicking my butt.  I had sent my mom a text a bit earlier saying "I want my mommy!!!!".  I told Sam that if grandma called or texted me back to let her know I was hurting bad.  Lucky for me my mom did text back and Sam did respond.  Mom got there in time to help pull my poor self out of the bath tub - otherwise I would have been stranded!  Lucky for me my mom stayed and helped get my kids in bed.  I went to bed and tossed and turned most of the night.

I called Dr. Blotter's office at about 11 am today.  I had to leave a message for the nurse on the nurses's line because they were on the line with someone else.  We finished dance lessons, did allergy shots, dropped Sam at a friends house, had some lunch and then B and I laid down to watch Alice in Wonderland at about 2.  I woke up at 4:15 to Dr. Blotter's nurse finally calling me back.  She told me she didn't dare not have me come in because it sounded like I was having a weird reaction to the medicine.  She told me to just come in right then and she'd get me in to see the PA, Lindsey (who we also really like).  So, I picked Sam up from her friend's house, dropped Sam off at dance and went to the ENT.  The boys walked over to grandma Kris and grandpa Scott's house and I took B in with me.

After talking to Lindsey she told me that she felt like it was a very rare allergic reaction to the Septra and that I should for sure never take a Sulfa based medicine again.  You don't need to tell me twice!  She said she wanted to blast me with steroids to get me feeling better and then when I"m feeling much better to try a different antibiotic to try the whole strep bacteria killing theory again.  I got a shot of Dexamethazone while I was in the office and she gave me enough of that same steroid to go for about ten days.  After that I will be on a double z pack to try and kill any strep bacteria.  So, here it is about 6 hrs post steroid shot and I have regained a painless use of my hands!  Wahoo!  My knees, hips and feet are another story entirely but I"m hoping that will come tomorrow or the next day.

A funny side note - when I walked back into the room following the nurse (it's once who works over in the allergy clinic too so we know her well) she told Brooke, "Why is your mom being such a trouble maker?"  B looked at her and without missing a beat she says, "Cuz."  I smiled and told her, "Don't you know by now?  It's what we do."  She laughed and said, "Yea, I know!"

A follow up with Dr. Blotter

Today we went back to visit with our ENT.  The appointment was scheduled as a follow up to B's prick allergy test last week and discuss the CF test/Immunologist appointment.

When Dr. Blotter first came in and asked how we were doing I just looked at him and said, point blank, "Please.  Do not EVER send anyone back to that immunologist.  Ever again."  He looked at me kind of surprised and said, "Really?  That bad huh?"  I proceeded to tell him that Dr. Firszt was the more arrogant, rude person I had met in a very long time.  I told him about how he was so rude about the food allergy testing, etc.  Dr. Blotter said he had only ever had to send a handful of people to immunology over the years and he hadn't ever gotten a bad report.  He did however have a friend that's a nurse at LRH that took her daughter to Dr. Firszt on his referral and she didn't care much for him either.  I told him if she was treated the way I was I don't blame her a bit!  He told me he was glad to get that feedback and would keep that in mind in the future.  Hopefully I saved someone a very aggravating experience.

Dr. Blotter checked both of B's ears.  In her left ear she has one tube open but the other is blocked.  Both tubes in her right ear are blocked.  However, even with 3 of her 4 tubes being blocked her ear drums aren't bulging.  Which happens to be a VERY big deal for little sister because her ear drums are ALWAYS bulging.  I told Dr. Blotter that since we had taken her off of all dairy that she has shown huge improvements - the perpetual rattle in  her chest is all but gone.  After looked in her ears he agreed that she has made huge progress.  Yay!

So, we have a couple options now.

Option #1:
Allegra, singular, continue strict no dairy diet, special drops under her tongue (explanation in a second)

Option #2:
Allegra, singular, continue strict no dairy diet, remove malfunctioning tubes, place new tubes in ears

Let me explain the drops.  I asked Dr. Blotter if B was a candidate for allergy shots.  I assumed that's what they would do since she had reactions to so many airborne.  He told me that right now she's too young so she's not a candidate for shots.  Apparently, in Europe, most people don't do allergy shots, rather they do this drop under their tongue.  This drop is a special mixture that acts like allergy shots.  Dr. Blotter said he believes that B will have a better response to it, it helps with some food allergies and it's safer for B than an allergy shot.  Here's the kicker.  The FDA hasn't approved the drops in America.  This means that they aren't covered by insurance and cost roughly $1,200/yr.  I'm assuming that he has other patients that do or have done them because he said that they have them made special at their lab.

And this folks, is why I LOVE my ENT and won't go anywhere else.
After thinking about our options, Dr. Blotter says to me, "You know what?  I'm going to make you a deal.  I will PERSONALLY pay for the drops for her if you will use them."  I told him I'm willing to try about anything with this child of mine.  He looked at me and said, "Ok.  I'll get the drops ordered."

Option #3:
The other option we have on the table right now is a little scary of an option but still one to consider.  This option is called a mastoidectomy.  According to the website medline plus: A mastoidectomy is surgery to remove cells in the hollow, air-filled spaces in the skull behind the ear. These cells are called mastoid air cells.  The way Dr. Blotter explained this to me is that they cut an opening behind the ear and go in and cut out a section of bone in or near the middle ear.  This surgery is a 2 1/2 hr surgery.  It is an outpatient surgery and they do have to put a compression wrap on after surgery for 24 hrs.  This option, however, is a much more permanent solution than yet another set of tubes.  I asked Dr. Blotter what would push us from yet another set of tubes to a mastoidectomy.  He said that if B has chronic ear infections or blocked tubes this winter that that is the route he would suggest rather than put another set of tubes in.  

Dr. Blotter did say that doing a mastoidectomy on a child is rare.  Doing a double mastoidectomy on a child is even more rare.  Apparently they do these an adults with chronic ear problems rather regularly, they just generally don't have kids like mine come across too often because tubes generally work for kids!

So, right now we are doing option #1.  We will begin a daily dose of allegra and singular,  We will continue to stick to a very STRICT no dairy diet and we will begin the special drops as soon as they are ready.  We did get word back from PCH that the CF test was negative (as we figured it would be) so that's great news.  We are still waiting on test results from Dr. Firszt's office so we are still playing a waiting game.  We did schedule a follow up for 6 weeks from now to check and see how things are going so hopefully we will get more good news at that visit!