Thursday, December 13, 2012

It's Beginning to Look A Lot Like Christmas

Last year, our Christmas tree lights didn't go quite as planned. The bottom portion of our tree just didn't light up. This year we bought all new lights, just not enough. So after a second trip to Home Depot we officially have lights that work ALL over the tree. Quite an exciting feat around here.

For whatever reason, maybe because it was like 90 degrees outside when we decorated the tree, we didn't whip out the camera. However, Neil managed to catch a few shots from his iphone.

Will was very intent on helping, more than last year (if that's even possible). He was very serious about getting the ornaments on the tree and making sure that his two favorite's, in order - a merry-go-round and a Santa bell that jingles - were at his eye level.

Final touches
I'm also VERY happy to report that we will get to see every single person on both sides of our family on Christmas Day. I don't know why this makes me so excited, but it really does.
Will helped me order some items online this weekend, one in particular for our new cousin, Baby Sophia (Neil's brother and his wife). He has asked me to pull up the photo of the gift multiple times and he is soooo excited to have Baby Sophia come over. This kid needs a sibling :-)

Wednesday, December 12, 2012

A Professional Change

I don't often blog about my professional life, my career if you will. A lot has changed for me at work in the past year.

I have always worked at a public relations agency. I love what I do, it's fun, different and something is always blowing up - literally and figuratively. A long-time fear I think of many new moms is that their career will suffer or change after you have kids.

Usually it does change, but it's not all that bad. You get a new perspective on life when you have a baby. I know I did.

My perspective changed even more when Will was 15 months old and we were told to start therapy and to figure out what was medically wrong with him. Luckily, I had worked with the same team for many many years and they worked with me on a lot of it. Then, we found out what was going on with Will and while I was falling apart, my team helped me hold it together at least professionally.

Sometimes going to the office was a welcome relief to my day. I could put aside all my fears, worries and sadness and just focus on doing good work. Then, it just got to be too much. My manager helped me to work out a new work schedule where I reduced my hours and started working 10 a.m. - 4 p.m.

That was a huge live saving change for us.

Fast forward a few months and out of the blue I had an old client email me to see if I knew of any freelance pr consultants, or would I possibly be interested in the job? It was something I knew I had to consider, plus I really like the people and the client. It's very rare to have a client fall from the sky. So, we ran the numbers and I resigned in September.

This wasn't a typical resignation I suppose. I cried, I wasn't unhappy with my job or the people I worked with. These people have been a huge support system and part of my life for nearly nine years, but it was the right thing for me and for my employer.

So, since October 1, I have been self employed, working from home, working at my new clients office and actually, working for my old employer! They hired me as a consultant for a few projects. It's been so busy that I haven't even had time to really tell anyone. Just in passing or as I email/talk with someone I haven't talked to in a while.

The first two weeks were really hard. I was still carrying 10+ years worth of "panic" that I was going to miss something. Then the panic changed to "I can't screw this up" and now I have what I would call, appropriate panic to do a good job for everyone.

It's changed the way I think about life, work/life balance and what I can do for Will and our family. I wouldn't have been able to do this without Neil's support. I don't have to count up my vacation days and pray that we won't end up in the hospital eating up days and days of time that I should be able to use to do stuff like take Will to have breakfast with Santa or go on an actual vacation!

One day, I even got a mani/pedi during my self-appointed lunch hour. I felt guilty about it, but then I realized that doing that every once in a while is actually healthy for me. (or so I told myself). :-)

My logo, thanks to the very talented Jimmy Egeland.

Monday, December 10, 2012


I guess it's that time of year. I've realized I've been hibernating - only doing the bare minimum of things required to keep Will happy.

We started the SubQ IVG in November, the weekend before Thanksgiving we found out that our second attempt at getting pregnant did not work. Then all the Thanksgiving festivities happened. Neil and I decided to go on an impromptu ski trip, so we went. It wasn't what we had hoped, but it was still time off. We got back this past week and I've enjoyed every minute of being home with Will.

I guess the past month has just been a heavy month.

The SubQ IVG stuff is a huge win for Will, but it's very stressful to get all the equipment, tubes, pump and meds ready, then jab a needle into Will and then watch him sit there for two hours while the IVG slowly drips into his body, forming a large lump of liquid under his skin. This is a weekly, ongoing procedure. This last time was especially unpleasant as it was the first time he complained during the process.

We try to make it a party - order pizza, have a family member or adult friend come over, have a picnic in the living room, watch a special movie. But that only gets you so far. My brave little boy.

I haven't felt thankful, everyone kept talking all month about how thankful they are... I know I am thankful for so much. I'm just so frustrated with this pregnancy thing. We are using an egg donor since it's my eggs that carry the Leigh's mutation. We're out of eggs from donor #1 and our doctor recommended starting with a new donor, a proven donor. So it feels like we are exactly back to square one, exactly where we were a year ago. It's hard to believe I've been jabbing needles, patches and pills in my body for a year and I don't have anything to show for it (the bruises are gone now) :-)

Our vacation was good, albeit some heavy conversations and bad weather all but one day. I think we were both just relieved to be home and with Will.


I know I need to do more for and with Will right now. We are in a peak time right now. We made a choice not to take Will out to a lot of places this winter eg. birthday parties, malls, large crowds.... Just want to give our bud a chance at health this winter season, but still do some fun stuff. It's maybe one of the hardest balances to strike.

I actually got my act together and started making Christmas gift lists and budget. Ordered a bunch of stuff online, still have quite a ways to go, but at least it's finally started.

At least I have recognized I'm in a hibernating funk and that it would be a good thing to snap out of it. That will likely have to just happen this week, as I know life is more fun on the other side.

Merry Christmas, Happy Hanukkah, Happy Holidays - whatever you celebrate, or don't, enjoy this time of year. I love seeing the magic of all of it through Will's eyes. I don't know if I'll ever forget the day we went to Target and we were rounding the corner into the Christmas section. Will's eyes filled with amazement to see all the lights, trees, ornaments etc. He was chatting non-stop about it. We walked up and down all the aisles. He kept asking who did all this, I said the people that work here. He told me (very authoritatively), No mommy, it was the elves from the north pole. Seeing the Christmas magic through his eyes, his pure little heart, is really awesome.

Sunday, December 9, 2012

Thanksgiving 2012

(A tad late here...)

We ate, we played, we gave thanks....

The "traditional" cousins picture in front of the turkey attempt... Had to post the series of photos, just too funny not to.

Adding in Baby Sam, my cousin's new little baby boy!

Things quickly falling apart.

Juice after playing hard outside

Dee Dee helping Will put on his special art project from school.

Sitting at the "big kids" table this year.

Ok, this necklace thing is not working for me lady....

Relaxing on the couch post-turkey with Papa
Gobble gobble!

Friday, December 7, 2012

Leigh's Clinic!

Some pretty exciting news from Will's Mito doctor!
"We are happy to announce that the UT Mitochondrial Center of Excellence will be opening the first Leigh syndrome clinic in January 2013. This clinic will be held on the second Friday of every month and will be dedicated to the care and research of patients diagnosed with or suspected of having Leigh syndrome."
This is incredibly awesome news for us as Will has Leigh's disease. In no way am I "downgrading" other mito diseases - many of them are fatal - but Leigh's is as well. To have a time to be in the clinic with only other Leigh's patients is going to be awesome.
It's a good opportunity for the doctor to find commonalities, issues and perhaps even better treatment options if all the patients come in during the same time period.
Happy Friday!
Cousin Carson and Will "going to work" with Papa's ties on

Thursday, November 15, 2012


Will had a decent nights sleep. He had a lot of coughing till about 10:30 p.m. then  I managed to get him to sleep sitting up for a while to help with drainage etc. He woke up coughing during the night a couple of times, but nothing like I thought it was going to be.

This morning he woke up like a new little guy. Smiling, snot was nearly gone. Literally yesterday it was a constant drip. His cough is still here, but it's not like anything it was. I really had no idea what to expect today, and was assuming it wasn't going to be good. I guess when you throw everything except the kitchen sink into the little guy, good things can happen.

Still not in the clear yet, but looking and sounding much better. His energy level is much better. His appetite seems good - he chowed down some pumpkin muffins that a friend dropped off (thank you Christi!) and he helped me make banana bread this morning.

One thing that became crystal clear to me though is this... we need to rethink our pediatrician situation. I mentioned in my previous post that on Tuesday we took him to the pedi. I love the pedi office we go to, everyone is very nice, attempts to be understanding about mito and our doctor is very proactive.

However, they simply don't get how aggressive you have to be with mito. I don't know if I fully understood either until just now. On Tuesday, the temporary pedi that you just get assigned to when you call in sick and the whole place is booked up was nice, pleasant and meant well. She gave me a prescription for antibiotics that I could choose to have filled.

Now granted, it was a full 24 hours later when the immunologist saw him and he had continued to decline and she's a specialist, not a pedi, but she was AGGRESSIVE on treatment. Much more than the pedi. I'm not sure what I'm going to do about it, but I wish there was a pediatrician who worked in the mito clinic. I just realized how much more careful, aggressive and vigilant I should be when it comes to Will being sick. (I often think is that actually possible, but I realized I could be).

I just reread my sentence, there are many people who simply wish they had a mito specialist that practiced in their area, much less some special pediatrician who understands mito. We have a long way to go with mito, but we are so in the right place with Dr. Koenig, Dr. Pacheco and the clinic. For that, I'm very thankful, a girl can dream though right?

One week till turkey day! Looking forward to visiting with family!

Wednesday, November 14, 2012

Surprise: IVG Starts and He's Sick

Well, the SubQ IVG started today and Will is sick so great timing.

On Monday,  we finally got a call from the immunlogist's office (Dr. Pacheco) to schedule the start of IVG with a start date of Nov. 20; then that didn't work out with the IVG provider; then the date moved to Dec. 4. Fine, a long time away, but fine. I pushed back a little bit, but that appears to be the date. Will started a runny nose, congestion and cough during the weekend. It's just kind of progressed fairly rapidly by the end of Monday.

On Tuesday his congestion and cough were bad enough to keep him home and head to the pediatricians office. He was all clear - no wheezing, ear infection or chest congestions! (IVG) About 3:30 p.m. I get a call again from Dr. Pacheco's office asking if we can come in the next morning to start IVG, we agreed to 8:30 a.m. Talk about random - to go from Nov 20 to Dec 4 to Nov 14.

So, on Wednsday morning, Neil and I get down to the med center after a few unpleasant Will time-outs. He seriously woke up on the wrong side of the bed. About 9:15 a.m. we are notified that the IVG company is "on their way" - from where I'm not sure. She arrives and we get back to a room about 9:45 a.m. (Just to clarify, yes, that 1 hour and 15 minutes AFTER we were told to arrive).

I'll explain the IVG process below, in a minute.

Since we were at the immunologist's office, Dr. Pacheco did an examinamtion of Will and ordered an antibiotic and steriod to help with the cough. We also did his flu shot at the same time. So, I'm not sure what Will did not get today... IVG infusion, antibiotics, steriods, flu shot and all his usual meds. I'm sure his little body is saying HUH?? He's laying in bed coughing as I write this so I'm sure it's going to be a long night. We'll just have to wait it out till it clears, at least we have medicine and Nose Frida on our side.

The IVG process.... you can read more about SubQ IVG on a previous post. Essentially, it's a couple of tubing, the medicine, a needle and a pump. The nurse was great and walked us through the assembly. First you numb the area and wait 30 minutes for it to take affect; then you hook up all the tubes, get your materials and meds ready; then you take a butterfly needle and "like you're throwing a dart" pinch up a chuck of fat on his upper thigh and insert the needle. Tape it down, turn on the pump and wait for the meds to drip in.

Any when I say wait, I mean wait... it takes an hour and 30 minutes for everything to drip into his system. Neil stayed for the fun part then had to get to some meetings; I was so thankful he was able to change his schedule so last minute so we don't screw it up on next weeks infusion.  My partner in crime is pretty awesome. If all else fails, there is a large manual we were sent home with, complete with pictures and an oncall nurse.

After the drip finished, Dr. Pacheco came in to exam him. See assessment above. We did the flu shot and off we went.

So yes, we arrived at 8:30 a.m. and did not leave the med center till 12:30 p.m. How very festive. We did leave with about six stickers (one for both cousins), three bandaids, a bag full of IVG supplies and a VERY pooped Will (and mom).

It's crazy though on the IVG, you are pushing 10 ml of liquid into the fatty part of your thigh, right under the skin. The liquid slowly distributes through the body over the course of 24 - 48 hours. So, it looked like he was growing a golf ball under his skin. It has since gone down significantly and this is a normal side affect. There are other less pleasant ones that I won't bother to describe, but suffice to say we have two EPIpens in the house now in case things go really bad. Which they shouldn't, but just in case.

So, moving forward we are to do these infusions weekly, every seven days is the goal, but you have some flexibility. In regards to him being sick, we're going to keep him home from school at least tomorrow and likely Friday as well to get him back on track. Plus, we want to keep a close eye on him after the infusion. Since it takes 24 - 48 hours to absorb, any effects will take just a long to see.

I actually think I might be going insane though. The ipad with the movie to keep Will occupied died midway through the infusion;, listening to the non-stop coughing; we caught literally every single red light home today; I shamelessly drove thru Whataburger for lunch and they didn't include Will's chicken nuggets.

Tomorrow is going to be a better day. Today was a good day in the grand scheme of things, we started the IVG which we hope will ultimately keep him here longer.

There are so many things afoot this week in our life and this has been a surprising turn. I guess that's good so I didn't have to dwell on the whole "grab a chunk of fat and throw a needle in your kid" thing.

Will spent the afternoon on the couch watching his favorite purple dinosaur. I spent the afternoon doing Nose Frida, boogie wipes, refilling the humidifier, filling and administering meds and in general loving my little guy.

I had great intentions of cooking dinner. HA!

Monday, November 12, 2012

Happy Halloween

Eh, I know I'm late, but better late than never. Will decided to be a pirate this year for Halloween.
We started the day off with a Halloween parade at school, special snacks and then trick or treating with my parents, my sisters, bro-in-law, Carson, Cameron, the Gell's and whoever else we happened to meet along the way. My sister took at the trick or treating pictures, so the Halloween parade will have to suffice for this post.

Arrr Matey!

Star wars, Uncle Sam, Pirate, Wonder Woman and Spider Man looking like they are up to no good during the Parade.

One of Will's many girlfriends :-)

Cameron aka Woody from Toy Story was NOT into his costume this year.

Will and his angelic teacher, Ms. Monica

Where is the candy people?
We also celebrated in spirit with Will's new and ONLY girl cousin, Sophia!! The cutest witch I've ever seen.

Wednesday, October 31, 2012

MRI Results

Well, I’m not sure how to feel. We got Will’s MRI results back on Tuesday morning.

It’s good, bad, and an expected result situation.

So, 18 months ago (March 2011) we had Will’s first MRI done to try and figure out what was going on. I laughed a little Tuesday morning remembering that I had told myself, 18 months ago this was it. The MRI won’t show anything and we’ll be done. We had already spent many months trying to figure out what was going on.
Those MRI results came back and showed four lesions on his brain near the deep cerebellum. Little did I know we had just begun.

The expected. Now, 18 months later, it appears that that tissue has died and has scared over. She described it as having little holes in his brain. She also gave a good analogy – imagine you have a big deep cut on your arm. It’s red, inflamed, “juicy” and just not looking good (that was 18 months ago). As time goes on, that red, inflamed, juicy cut will scab over. (Side note, your arm tissue doesn’t die however).

I guess that was the expected part. We already knew he had the lesions, but Neil and I didn’t really know what that meant for the future. The first “good” part is that Dr. Koenig explained that the younger children are the more capacity they have to compensate for missing pieces of the brain. She said that some people can live for a long time with a huge piece of their brain missing. So this makes sense, or as much sense as a hole in your brain can make. The technical name of what happened to the brain tissue is called encephalomalacia. Clearly I have some new research to do.
The bad. There is a VERY small spot on his brain stem near the periaqueductal region. This area is responsible for moving spinal fluid etc. The brain stem controls body temp, breathing, heart rate and so on. BUT and this is a HUGE BUT, Dr. Koenig said she is not even close to worried about this.

Apparently you could only see this spot on only one cut of only one slide of all the MRI slides and it was so incredibly small that it’s “not of concern” – from her lips to my ears. I asked if it might have even been there 18 months ago on the first MRI and it was missed and she thought that might be possible. So this could be an old spot, but new to us.

This is just really hard to internalize. You’re told a part of your child’s brain is dead, scarred over and that little tiny glimmer of hope I’ve been holding on to to fix those lesions – stem cell research – is squashed; then you’re told there’s a new spot, but don’t worry about it. (HA!)
Then you’re told the GOOD, which is what shocked me the most. Will’s brain appears to be stabilizing for now. The old MRI showed a brain that was a "hot juicy inflamed area" but now it seems as though the brain has cooled off and things are stabilizing for now!. Dr. Koenig thinks this might be because of EPI-743 and how good he is doing. So, the theory is, keep him on EPI and start the SubQIVG and this all should bode well for my little Wiggles. Or, as he corrected me last tonight, “my name is William Martin mommy, not Wiggles.”  

I am supposed to be feeling good and happy with the results. I’m struggling with that. My thought process hasn’t caught up with my feelings yet. I just heard dead tissue and new spot and kinda lost it for a few minutes. I actually had to tell Dr. Koenig, say the good part like three more times for me so it will sink in. We laughed and she obliged.
The sentiment that I’m going to try and hold on to and trying to ignore all the really terrible things I didn't want to hear, is a direct quote from Dr. Koenig, “Will is doing darn good.” Now, in addition to keeping him stable and "healthy" I am on a mission to fix this shit. Pardon my french, but in some regards I have more incentive to find treatment and a cure for our buddy than ever before.


Tuesday, October 30, 2012

The Past Five Days

Whew! I think this kinda captures our life.

Friday, my sister Julie and I took Will and Carson to The Woodlands high school football game. This is a HUGE deal. Julie used to teach there and occasionally takes Carson to the games. Well, Carson loves going and got Will all pumped up to go. They have been asking us to take them for a month, seriously, a full month.

On the field before the game, watching the football players warm up.

Singing the national anthem

Up close and personal with the ladies... Excuse me fellow The Woodlands High School alumni (ahem, Lindsey K.), it's not just some pathetic little drill team - it is The High Steppers. Check yourself ladies...

Pretty happy after chowing down on a some sour patch gummy straws. I'm always amazed when Will eats gummy stuff. Just a year ago he would have choked on it.
Saturday morning we woke up and went to Pump It Up for a birthday party – shout out to the Granello’s for an awesome time. If you’ve never been to Pump it Up, it’s kinda my worst nightmare for Will. Bounce houses, germs, he refuses to wear his leg braces because no one else is wearing shoes, kids running everywhere and just one squirt of anti-bac before they go consume pizza and cake after bouncing for 2 hours. BUT, Will loves it so we do it. We show up a little late to avoid too much jumping, then I follow Will around and try not to sweat the whole time. Will slept in so late that I was afraid we'd miss the whole thing!

Playing air hockey

Neil and I both hoisted our nearly 40 pound kiddo up a fairly steep set of stairs so he could go down the big slide. I was pretty sure I was going to lose my footing and fall on the children behind me, but thankfully I didn’t. Whatev, I’m sure all the adults were jealous that we got to go down the big slide.
So my camera kind of sucks sometimes and I was only able to catch Will at the very top of the slide. I really wish I had gotten a picture of Neil coming down it. That would have been classic.

I was so proud of Neil and I (and Will). There was a piñata, and Will marched on up and had his turn without any help from us. Normally, one of us would have helped him so he could really get a good hit, but he managed to swing, hit it and not fall over.
Waiting in line for the pinata with our two favorite Bilski girls!
Came home and took a nap. Phew.

Saturday afternoon we hustled down the street for a Halloween party for our neighborhood friend Maggie. So much fun! We painted and decorated a pumpkin and Maggie also was a pirate, just like Will. We brought her a sword to share and they chased each other around in the back yard.

As lame as this sounds, I am pathetically afraid to go to other people’s homes for parties like this 1- don’t know the lay of the land so I don’t know if Will can really get around 2- other families / parents who don’t know our situation judging (ok, I really don’t worry about them, but it’s just irritating) and 3- food I didn’t cook or know where it came from ie. Choking hazard.

Luckily, this Halloween party was awesome. The parents were super nice as were the kids. The spider cupcakes were delicious and most importantly Will had fun.

Sunday morning

6:30 a.m. – Will wakes up puking. Clean up. Back to bed.
8:30 a.m. – Will pukes up the three sips of pedilyte I managed to get him to drink. Clean up. Barney time

Manage to get him to eat some food, drink Gatorade (negative on the pedilyte, not worth that fight)
2:30 p.m. Wakes up during his nap, projectile puking. Feels warm.

3:30 p.m. Leave for the ER
9:30 p.m. Leave from the ER to come home.

Luckily, he didn’t have any more pukes at the ER, but we managed to get him on fluids quickly to keep his body from dehydrating. He had a low fever in the ER, but after the fluids started it went down by itself which was nice.
Of course, I had packed like we were going to stay for five days, or get puked on five more times. Whichever. J The lady who did his IV was not, shall we say, experienced? Plus his veins were pretty crummy because he wasn’t hydrated. It was a bloody scene and they changed the sheets thankfully.  Will was NOT a happy camper.

We all slept well Sunday night and he had a great appetite on Monday morning. We got to hang out with him all day J Neil and I tag teamed working from home and hanging with Will so that was nice.

I had a doctor appt. on Monday morning – just needed to do some labs. Will came with me and held my hand while I did my blood draw. He told me I was very brave and good job for not crying. I wanted to cry after that.

Tuesday: Will was back to school and Neil and I ventured over to the med center for the MRI results. It also happened to be my mito appointment, so we chatted about those items too - nothing to report on me. I will post MRI results soon, just digesting.
Whose ready for the weekend? ME!!!
Will showing off his mad chewing skills - a huge piece of gummy candy in his mouth. Carson looks a little disgusted if you ask me. :-)


Friday, October 26, 2012

New thing

I feel like I shouldn't have posted what I did on the MRI regarding the "new thing" - I was just too lazy and tired to write more and I don't know enough about it.

It's not new to the medical community nor is it some life changing thing for mito kids. It's just SubQ IVG.

Now for those of you without special kids now know why I was lazy, for those with mito kids it's nothing earth shattering.

Will's mito and immunologist doctor have a theory, if you will, that doing SubQIVG for Will is going to help with a few things. 1) IVG has been shown to reduce brain inflammation and swelling. Maybe that will help the four lesions on his brain. 2) IVG will help keep Will healthier and less sick which will in theory, keep him from being hospitalized or weak.

So what the heck is SubQ IVG?

SubQ - subcutaneous injection is administered as a bolus subcutis, the layer of skin directly below the dermis and epidermis, collectively referred to as the cutis. - or fatty tissue. Subcutaneous injections are highly effective in administering vaccines and medications such as insulin, morphine, diacetylmorphine and goserelin. Here is a "how to give" from the NIH.

IVG - Intravenous immunoglobulin (IVIG) is a blood product. It contains the pooled, polyvalent, IgG (immunoglobulin (antibody) G) extracted from the plasma of over one thousand blood donors. IVIG's effects last between 2 weeks and 3 months. It is mainly used as treatment in three major categories:
Until somewhat recently, IVG fluids have been administered through an IV, not SubQ so essentially you have to be in a hospital or in-patient setting. Now, with SubQ, we can do this at home.

I haven't had the training yet, nor have we started this. I don't even have the appointment time confirmed. Hence why I wasn't really talking much about it, all I know is what I can google and learn from other families who are currently using this.

So, this info could all change, but what I think I know is...
-Weekly infusions
-Takes about an hour
-You have to insert a butterfly needle into the fatty tissue, tape it down and wait for the IVG to infuse into his system.
-Yes, there are a variety of side effects, most of which sound pretty crummy. But, we've decided the good outweigh the bad. Plus, most others I've talked to (4 other families using it) have had fairly mild issues that go away quickly.
-I'm thankful we were able to get insurance to approve this, otherwise the cost would likely have been prohibitive.

So, I don't know much right now, other than the theory is it will hopefully help our buddy.

Whenever we get this started, I plan on amassing an intense video / movie collection and am hopeful that I don't screw it up.

In other news, we finally got a cold snap. Not as cold as his first snow in 2009, but hopefully we're heading that way.

Tuesday, October 23, 2012


Just a little update and request for prayers. Will had an MRI of the brain done this morning. He was, as always, a trooper.

I went a little "postal" through this process because of a variety of roadblocks, insurance, people not listening to me (can you imagine?) and so on, but at the end of today we are home and Will is seemingly doing well.

So why the MRI? It's for a baseline test for something new we're going to start trying. I'll post about that later, once I know more details and can better explain.

I just hate putting Will under. He's had this allergy (??) related cough since Saturday morning and I've been anxious since then.

So why did I go postal? Well, it's a long story, but the short version is... you don't get your time slot for an MRI type thing until the day prior. So on Monday about 1 p.m. I call up to the hospital since I still haven't gotten a call and find out that his time slot is 10:30 a.m. on Tuesday.

Not fine in my book. And not a lot of time for me to try and get this fixed. From the start of this, I asked for the first appt in the morning, said whatever day they could accommodate that request I would clear my schedule. Supposedly that day was today. Well, it wasn't.

Of course, I was trying to get it switched, but then the anesthesia coordinator didn't call me back after two voice mails. Apparently, she had a family emergency and had to leave. Well, honestly, that's just not good enough.

I should have just cancelled the dang thing and rescheduled, but I felt like I had reached the point of no return. We're waiting on this MRI to start the above mentioned "new thing" and I don't want that delayed any further. Plus, I refuse to ruin his Halloween.

Why do we need/want the first appointment of the day for something like this? Well, the longer Will fasts, the worse it could be. He has a neruo metabolic disorder. Metabolic = metabolism = not eating = not a friendly combo.

There was a 7 month old ahead of us. They do it by age. So one of my "going postal" comments was something along the lines of, "so you'd rather put my child in danger of additional brain damage versus a fussy 7 month old" - of course if I was the parent of the 7 month old, the story would be different and obviously there's something likely really wrong for that 7 month old. I just wasn't in a sympathetic place.

Anyways, it was a long day. We left at 7:45 a.m. and didn't get home till about 2:30 p.m. The only nice part of the day was spending some time with Neil and running into some mito friends in town for their doctor appointments. I couldn't imagine doing this and staying in a hotel or with friends. Just adds to the stress load.

I hate anesthesia. I hate that his little hands are clenched to my shirt. I hate hearing him cry and whimper. I hate watching them put him under and his eyes rolling back. I hate waiting. I hate waiting in recovery looking for signs of life. I hate seeing him get upset because he feels funny. I hate looking at my little angel with his mouth open laying on a bed with wires and monitors and most of all I hate that he now knows what's coming. He didn't want to put on his gown because he knew what that meant.

I hate all that because it mostly just makes me go to a bad place, thinking about his death. That makes today easier in a weird way. I'm about 99.9 percent sure everything will be fine on days like today, but there will be other days when I'm not so confident. I hate that feeling.

I hate this, but I sure LOVE my little brave buddy who did so good today. He feasted tonight and I happened to find some chocolate cake for him too!

MRI resutls, not a result I'm interested in finding out. I just don't have a good feeling. But, regardless this will help us move one step further towards a proactive "new thing" that we have hopes will improve his quality of life and general health.

Tuesday, October 16, 2012

The Great Flu Shot Debate

I used to debate in my head, should I get the flu shot or not? I spent most of my life, until pregnancy really, not getting one.

Then, I got pregnant and was "required" to have a flu shot done, then we had Will and we were "required" to get one for him and us too. Then, we found out we have an immune compromised child and we really are required to protect him, us and those around him from getting sick.

If Will gets the flu, not only will he end up in the hospital, but it could forever change the direction of his health. One viral infection could send us spiraling downward into a place where we will never get back to baseline.

This right here is my biggest fear. I know it's going to happen, but I'm praying, begging God, for one more holiday season with our Wiggles as we know him today - happy, vibrant and full of life. Last holiday season Neil and I spent most of it in a fog.

Anyways, if you read this blog and you are around Will as a caregiver, friend or playmate, I'm asking you to consider getting a flu shot this season. I know for many of you who are skeptical it will be a challenge. I'm not asking you to change your beliefs, thought processes or outlook on the flu shot - I'm simply asking you to consider it if you are around Will to help me protect his life.

To take it one step further, I also want to specify which kind. :-) I'm not pushy am I? This is mostly for the kiddos. I have learned/ researched some specifics on this...

FluMIST - this is a live strain of the flu that sprayed into your child.
FluSHOT - this is a dead strain of the flu injected into your child.

Neither sound like fun, neither sound safe nor "normal" to put something that could potentially harm your child directly into their body 

All that aside, there has been an article published by the FDA that basically says for immune compromised children, the fluSHOT is a better option. Will's immunologist also agrees with the fluSHOT as the best option for Will.
See page 7 for an exact mention of Leigh's disease.

I know every child is different. I know vaccination injury is real. I know my child is at risk for a lot of really crappy health issues. I know you want to protect your child too.

So think of it this way... you just had your child's fluMIST done, you take them to school, Will and the child play, laugh and share toys, meanwhile your child can fight this live strain, but mine can't. I know it's our choice to send Will to school, to put him into the world and expect others to think of his situation. But, as Will's advocate and mom, I am responsible to at least ask and inform those around us.

So, I'm asking you as an adult to stop in at CVS and get a poke in the arm for $15. I'm asking you as a parent to get your child the fluSHOT this season. I'm also asking that you are mindful of germs, snot and just general yuckiness when you and your child are around Will. What others can fight off, he can't.

So, I've said my very whiny, very self-centered peace about flu shots and why they are important for us. I have a bottle of "goop" as we call it by the front door. If you come over, feel free to grab a squirt. Don't be offended if we don't show up at a party because we've heard some kiddo is sick or if I obsessively squirt goop all over you and your family. It's because I love my little guy and just want him around for as long as I can.

For us, the pros outweigh the cons. Thank you for reading this and considering what's best for your family too.

Monday, October 8, 2012

It's getting Spooky Around Here

This time last year, just a few months post-diagnosis, I was in a fog. Last year for Halloween I went to the Kroger down the street the night before Will's school Halloween party and bought a $10 glow in the dark skeleton. While that's totally acceptable, I look back on it as a pathetic mommy move. (I know, I know... it's a stupid mommy pressure thing we put on ourselves - damn Pintrest - which I refuse to even log on to)

This year, we got a catalog in the mail. Maybe one came last year, I really have no idea. Mail wasn't a huge priority. Will picked out his costume, I ordered it and it's already arrived. BOOM! Go mommy!

What a difference a year makes... I am kind of proud of myself honestly. I know Will didn't know the difference last year (or maybe he did and I was so foggy and depressed that I didn't even notice) but I knew that's not what I wanted.

Now, he eagerly talks about his costume and Halloween and trick-or-treating with his cousin. This is what I wanted. Special Halloween paper plates I grabbed for a dollar at Kroger ALL month long to make his morning more fun.

I still remember his first Halloween we eagerly headed over to Party Boy to pick out our baby's first costume. It was a monkey - pretty fitting for him. Our little monkey. Pre-diagnosis, pre-therapy - it was just so pure and honest without any reservations of future Halloweens to come. It was just us hanging with our monkey. I miss those days. I miss just looking at him without fear or feeling like the moment is just slipping by too quickly.


If you haven't gotten your kiddos costume yet or perhaps you are a "big kid" and love Halloween as an adult, please consider ordering it online here:
15 percent of your purchase will go towards UMDF!

Hope you have a spooktacular October. I'm looking forward to pumpkin patch visits, trick-or-treating and finally some cooler weather! Likely Will is just looking forward to the candy :-)