Sunday, May 22, 2016

But Wait, There's More

As if potty training and housekeeping, and potty training were not enough, we are at the busiest time of our school year. As in we had a piano recital. And the girls have a play. Which means my mother-in-law has been driving them to practice, through horrible traffic, every day this week. I french braided Audrey's hair and showed off my bad make-up applying skills. Eye-liner what? I can't wait to see all the hard work come together this week-end, and next. I'd tell you to come see it, but I think all the shows are sold out. It's going to be that good. The little kids are  enjoying all the practicing too. And many times a day we have interactions like this:

Me: Fiona, hold still so I can get your new panties on.

Malachi: I see Fifi's butt.

Me: Yes, now watch out for that puddle!

Malachi: (laughs) but I can see her butt!

Me: Its not a big deal. You guys take baths together.

Malachi: (walks off) starts singing, There is a castle on  a cloud.......

Fiona will climb to the top of the swing set and like a  town crier,  lets the  neighborhood know:

A     more   day!      A     more    day!

I'm sure they are all on pins and needles to know what happen will happen tomorrow. But every day, there is  still one day more. As announced by Fiona.

Events have been so stacked, Kateri had to choose between her piano recital, and play practice. She chose the play. Cyprian had no other competing engagements. Plus there was a cookie reward at the end. Which is the main reason the kids go to these things. So we kept his name on the performance list.

I gave the babies their baths early recital night, as curtain time was 7:00. And because they had popsicle in their hair. Otherwise I'd have skipped it.

Malachi was super stoked. 'Homeschooler piano recital! I've got just the outfit!'


As I had to wrestle Fi into her clothes, I was happy to have Malachi dress himself. I had gotten him new shoes as well as Fi, so he  now can get himself completely ready when we need to go anywhere. Which is great. Though some times he could use a little supervision. He insisted on wearing socks with his crocs. Fine by me. Hey, the orange actually matches his shirt! Good job. But then, apparently, for no reason I could guess, he decided to ditch the pair and move on to a new color for the other foot. Still fine by me. It actually ended up matching his red coat. I guess he was thinking ahead. 

He only stuck out a little amongst the other suit clad children. We sat in the back and he actually did really well, only falling off his chair five times. Fiona was a little more bored, so Shane took her out to walk our old schooling grounds. Where she  found a puddle and successfully rendered her shoes useless for the evening and came back barefoot. Also fine by me. I got to sit back and enjoy the recital, with Fi being entertained by left over rain and Malachi trying to see if he could cheat gravity one more time (he couldn't).But it didn't hurt so I let him continue his science experiment. I encourage my kids to find every opportunity for learning, and sometimes inspiration strikes at your brother's piano recital. Very fine by me.

Somewhere between Bach, Beethoven, and Burgmuller, Malachi released an important service announcement. He had to pee. Normally he just does his business and we carry on. I panicked when I checked and found he had decided big boy undies would really complete his look. I was so glad he had alerted me to this fact, and had given warning with enough time to slip out to the restroom. He acted like it was no big deal, humming 'there is  a lady all in white...'

Cyprian played well, and I was  able to video his performance unmolested, as Malachi was testing the gravitational pull in a new field, several chairs down from me and not anywhere near my elbows. So win-win. (one for gravity, one for me, Malachi 0). And then it was cookie time so Malachi felt like a winner too.

Fast forward one week. The play is out and going strong. I got to see it last week-end. Shane gets to go this week-end. I only cried three times. Cyril was dry-eyed the whole show. It's such a good story and all the kids did fantastic jobs. Plus, two of them were MY children. It was a very emotional evening. And that was before I got lost and took 50 wrong turns on the way home. Probably didn't help I hadn't eaten lately. But that wouldn't make a road that was there last time I remembered to disappear. After lots of u-turns and scandalizing/scaring the soon to be new drivers, and showing them how not to do it, I decided to cut my losses and take the long way home. Which worked.

Shane showed me an audio direction thing on my phone. But that will involve being able to HEAR the directions.  So that might not be a help to me. At least I didn't have screaming babies to complicate things. We picked up a snack on the way home. The babies were already sleeping so we were able to crawl right into bed. After my bed time snack.

        Put on weight with this one weird trick! A glass of half and half with a Snickers just before  bed.

Which I am happy to report, is working. Shane and I went to a wine dinner last week and I was kind of excited to pick out something to wear that was Not maternity, and didn't have to be nursing friendly. My first thought was, 'do I even have any of those?'  And are they totally out of style? I actually didn't care about that second part at all. It was more like, have they been eaten by moths?

It turns out, I do not own a single pair of jeans I can wear anymore. (Hurrah?!) Ok. So we still have a lot of stretchy cotton fibers. Check.  But not the yoga pants I wear  every day. Plus, I think the nicer pair had chocolate melted onto it. Ok. A  stretchy skirt. So what if I wore it when I was pregnant? It is  actually NOT maternity. But then I ran into the ever present problem of shoes. No slippers. Fine. Flipflops were casual-summer-fun, but not the safest for my  already numb feet+evening+wine+cold. It was a very warm day but if the event was air-conditioned, or the evening got too cold my feet would turn to blocks of ice and I'd beg Shane to carry me home and that would be a bummer.

Ah ha! Boots. And a long skirt. And a sweater to add if it got cold and I got chilly, which it did, and I did. So it turned out very well. And some day I might actually get a real outfit that fits my current state. I was super surprised and pleased when the boots actually fit my calves and didn't make them look like tooth picks playing in  my grandpa's boots. So as restricted as my wardrobe options had become, I was happy to know I've been on the right path. Eventually I'll add some muscle building too, but my personal trainer said not until I get more reserves added. (Needless to say, Shane is my personal trainer and keeps me supplied with all my nutritionally dense meals as well.)

I'm sure you are all wondering if we've heard from Italy. So far, Florence is still being coy and playing hard to get. But that's ok. We are comfortable being forward, though there is a fine balance between forward and Creepy American Stalker. But I think so far we are keeping it uncreepy but still alive and very interested. So hopefully that is all good.

And then today, I got a call from Chicago. Chicago? Who's Chicago? We applied there months ago, then they stopped talking to us. It felt like we were on the 'do not contact list'. I can take a hint, so we Then Shane looked some more and decided we could stay a nicer hotel, a little ways away. So we cancelled the first one and booked the new one. Now, even if they don't accept me, it will feel like a little vacation in the nicer hotel.

It was kind of a whirlwind of emotions. We didn't hear from them for a month and had almost written them off. Then all of a sudden they are flooding  my inbox and CALLING me!  We've been revisiting all our correspondences with them ad going over the protocols and I started hounding the Chicago HSCT forums for more intel about what it all means and how soon it might mean anything etc. Some people were accepted at their evaluation. Some people were put into the control group, meaning they are on a second tier drug and if they get worse they will then cross over to the treatment group and get the procedure. If  they did offer drugs, I'd have to decline, as all the  second tier drugs have some unpleasant long-lasting side effects. And because I'd hopefully be heading off to Florence soon.

I know/feel it's kind of crazy to be courting so many clinics. At the same time. But the way things move you have no idea who will be able to move the fastest at any given point, or at what point they may stop considering you at all,  so you apply and keep the doors open until you get on the plane. 

                                                            And then THIS happened!

I don't have Shane's pictures of their brunch at the Space Needle and the Star Trek event they happened upon earlier that day. But it seems it was a great day ending with a great meal, and cake, at Grandma and Grandpa's house. Then this week, we will finish up some last lessons and parties,  and summer vacation will officially start!

We are so excited!!!!

Tuesday, May 3, 2016


I figured whatever I came up with for a title would make about as much sense as that. (If you are from Reykjavik I meant no offense). But I would like to point out I spelled Reykjavik correctly the first time I typed it. I think that was due to all the Scotland Yard games we played when I was young. 

So many things going on, its hard to keep them all straight. Not that I needed an excuse. It has been very warm today. I mean, so hot the kids didn't want to be outside. Yet when they did, they felt completely comfortable to strip their clothes and pick up sticks as they pranced around the spent embers left over from a cook-out in the fire-pit. And when they tired of that, they took off  their diapers. I was alerted to the Lord of the Flies re-creation when Fiona came running to the back door wearing only one shoe. One new shoe. Which I had just bought that day. So even though I would like to have stayed in the cool house, I was inspired by the thought of keeping the shoes together for at least a whole day and followed her out. It was on the way she told me what was going down.

And I mean down. There was Malachi, completely naked. His diaper was lying  in the pile of dirt which is the kids inspiration for all kinds of fancy soups. And in an instant can also be used as war paint. And at that moment was the dumping ground for what used to be in Malachi's diaper. And was now on Fiona's shoe.

Her new shoe.

After cursing the poo gods, I cleaned up the yard, scrubbed her shoe (plus Malachi's for good measure) and went back to doing laundry. Fiona followed me up and I could hear her playing and talking about squirrels, her favorite, and then I hear the papery Velcro sound of a diaper being removed! I ran to catch her just in time. Sort of. If by just in time I mean before she painted the carpet and walls with her excrement, then it was in time. I swooped her up and plopped her onto the toilet to see what sewage we could salvage. And if by salvage I mean smear what was on her all over the toilet and seat, then we were definitely salvaged. Oh so much salvaging these days.

It was at that point I realized I had no diaper wipes to clean her so I carried her to the other room to find some. Finally got her cleaned up and went back to doing laundry. When I put away the towels I discovered I hadn't quite finished  salvaging, so I grabbed the Lysol wipes and went to town.   I finally finished putting the bed together along with whatever unfinished tasks I happened upon. Leaving plenty for the next day as well. Potty-training two kids is really quite an effort. And I don't actually do much. Just give reminders and clean up messes. I don't know what I am going to do once we've finished. Oh, I know! I'll finally finish the rest of the unfinished tasks I didn't get to. Haha!

We  still lave not gotten our Skype with Florence re-scheduled. Every day goes by and I can imagine all the other prospective patients chatting with the Dr. packing their bags, losing their hair, and going home. I know everyone is busy, but it really is ridiculous how slow the communication is. We applied to another clinic and sent all the required paper work plus more. By this time Shane has put together a comprehensive introduction packet  with CDs so there is no latency on our end. A couple weeks later, they asked for more. We sent them more. Two weeks later they said they might have us fly in for an evaluation. Shane said whatever, whenever. We are available. A week goes by. Shane reaches out. Three weeks go by. A month. Nothing.

So we are left with lots of time to think, re-think, search, and re-search for any bit of information I have not yet learned in all my researching. Of which there is much. Researching and what I have not learned. Sadly, in some exploring, I have come across something that makes my blood boil. Many people have benefitted from HSCT and their MS has been stopped. What has not been stopped is the fallout from all the steroids prescribed for them over the years. Many times I was offered steroids for various 'presents' courtesy MS. I asked if it would help long term. No. It will just help you walk sooner, see sooner, swallow better, or return to whatever is your nee normal sooner. But it has no long term benefit on actual disease course. I totally get why people do it. If you've got a job, and  a family to take care of, a few days can be the difference between being able to do that, and not . So, why not.

 I considered it when I had walking issues when Fi was a baby but I decided I'd rather not disrupt her nursing and lose sleep over her being sad. So in the end I went with more sleep and declined. What no one ever told me ever in all the 24 years of relapses, is that an irreversible consequence of long term  high dose steroids is AVN , avascular necrosis (not to be confused with bird ailments though birds do  have hollow bones, so maybe there is something there.) Avascular necrosis is a condition where the blood supply to the bones becomes clogged and the bones starve to death. And crumble. If you have read Marc's blog, you can see how painful and debilitating this is for him, because MS wasn't enough. So far the only treatment is a joint replacement, if you are not too bad off to handle it.
Just to note, three alcoholic drinks a day for several years can also contribute to developing AVN. Again, thanks to pregnancy and lactation, I've also been spared this opportunity. Though it is said to be a 'rare' side effect, it seems its not too uncommon in the MS population.

 I'm thankful I have never partaken of it, though it was not do to the warning labels I was never even given, or the due diligence of doctors informing me of the risks. From what I can tell, not many people were aware of the risks, and now that their bones are disintegrating and they can't walk again, this time not due to MS, say they would never had chosen it had they known.

Then Shane brought a recent trial to my attention involving the brightly colored unicorn poop MS treatment, Gilenya (Fingolimod). Apparently, when patients came off the pills, they soon after suffered huge relapses, which steroids could not even stop. It opens one up to opportunistic infections, including PML, a deadly brain infection. So if you start it and want to get off the zombie train, you are in for a really rough ride.

And yet when patients bring up HSCT to their doctors, they are warned. Chemo! That's risky and overkill. And oh wait. It works! Where all the pills and shots can do is cut down on relapses, none can completely stop progression. Which HSCT does for 80-90% of patients.

So my next project is to research all the drugs used in HSCT and their long term consequences. Most clinics do use steroids in certain  phases. Though Singapore does not do this. I don't know what the benefit of doing/not doing it is, or if there are alternatives. I believe it is given with  the  chemo to help minimizes reactions and not in large enough doses as to put one at risk.   So maybe its ok. But I want to understand it all, so that will be my project for the next while as I wait to hear from Florence.

That and the myriad of random tasks I'll be handed by regular family life. Fiona got hold of and ink pen and decorated a couch cushion. When I whisked the cover off to give it an acetone bath, Fiona crabbed the unprotected cushion and ripped the cover, sending feathers floating about the room. (Again with the birds!) So then I had to hunt down a needle to fix it. I haven't done much sewing of late, its  best for everyone that way. I finally found one needle that had rust spots all over it. Yeah!  Feathers AND Tetanus. Then the thread kept breaking, though it was advertised as silky and strong. Whatever. I gave up and threw the cushion on the big pile of other unfinished projects. I'll probably take another stab at it tomorrow. Get it? Stab?