Last weekend while Neil was in Austin visiting his brother, Will and I went to my parents house and we made the annual pumpkin patch visit. No surprise it was a hot Saturday in October with bad mosquitos, but we still had a lot of fun.
PS: Julie and I did NOT coordinate outfits for the guy. LOL.
Enjoy the pictures!
This is how the day ended... Carson was tired of taking pictures, Will was as red faced and baby Cameron spit up. Luckily, aunt Lisa was all smiles.
There has been a lot going on the past week and this blog ended up getting the shaft... I'm getting up to speed now.
On Friday, two families, the Schapper's and the Wehring's put together an incredible gift to the Mito Center for Excellence - a sold out golf tournament! A crew of our friends, guys that Neil met through business school, came together for a day of golfing, and based on what I heard some typical guys night out beers.
Andre, Craig, Mitch, and Peyton were the driving force behind the "Friends of Will Martin" contribution and Neil and Keith formed a Finial Group team and brought two guys from the office.
Who knows what they all really scored, but we really appreciate everyone coming together for this special cause. It means so much to us to have friends who are willing to go above and beyond to try and help find a cure. Every day that's what I pray for. A cure.
Writers block is in full effect for this blog, thankfully I suppose that means things are calm. So I'm going to do what I do at work, just start filling the screen and then edit it down and hope I didn't waste my time. Only on the blog I promised myself I wouldn't edit my thoughts, just spelling and some grammar. :-) Good luck reading this posting!
It's almost been 4 months since we found out. I'm sure people are sick of hearing me be sad, upset or feel like it's a never ending saga that is now our life. I'm getting tired of it myself. What to do though? On another blog I frequent someone posted this poem called "Normal" - I'm not ready to post it here. It's mostly a poem about the new normal is like after your child dies. A lot of it is still relevant to just a special needs child, just hit me in the gut and made me realize that our new normal really is just different and never going away. Our friends and family will either accept it, leave us or ignore it and never really want to know or care to understand, which the last one is kind of like leaving us. Eye opening really.
We brought Will up to meet Dr. Mark (our mental therapist) this morning. It was nice to connect the two for me visually. Will pretty much didn't leave my lap, but when it was time to go he gave Dr. Mark two of the best hugs I've ever seen. It made my heart heavy but happy.
There are two new people I now run "life choices" by - Dr. Koenig (mito dr.) and Dr. Mark.
Neil is going to spend the weekend in Austin with his brother so Will and I are heading to my parents house for a weekend of fun, pumpkins and likely lot's of photos. I'll be posting some fun ones.
I still haven't finalized the Halloween costume..... I am too competitive with myself. That mustache from last Halloween was really unbeatable. I feel like something generic like a devil or cowboy is just so blah haha.
Huge shout out to our friends who are already lined up: Andre (who is flying in town from VA!), Craig, Keith, Mitch, Peyton, Reed and Taylor. We really appreciate your support.
This will directly benefit Will as Dr. Koenig is the UT Mito Center co-director.
Wehring / Schaper Invitational Golf Tournament Benefiting the UT Mitochondrial Center of Excellence
What: 4 Person Scramble
Where: Stephen F. Austin Country Club
When: Friday, Oct. 28 (11 a.m. registration, 1 p.m. Shotgun start, 6 p.m. dinner/awards)
Entry fee: $400 / team. Includes green fee, range balls, cart, on course beverages, dinner and prizes
Let me know if you're interested in forming a team or donating money and I can email you the entry form.
Special thanks to the Wehring and Schaper families for putting this all together.
So I'm not going to lie, today still sucked, but it's ok. We move on, each day right now should be awesome because I get to see my little buddy - happy and healthy (minus a cough that has me paranoid right now). I made an appt. with the IVF clinic to discuss egg donor options. Oct. 20 is the appt, but again, just research. Not planning to get the petri dish out any time soon.
At the last minute Neil and I were able to grab our awesome neighborhood babysitter, likely one of the sweetest girls in the world, and escaped for a quick dinner tonight. It was much needed and one of those really relaxing good meals.
We decided we're going to get Will a real big boy bed and new room "stuff" in the next few months. What 2 year old doesn't want a new set of sheets and comforter for Christmas? :-) We're going to leave the guest room as such and turn his cute nursery into a big boy room. I suppose it's time to let our little boy grow up.
Though, he still loves him some baby! During a trip to my parents house this past weekend, Will showed Cameron how to work this toy, and enjoyed himself too. Cameron loves spitting up and Will is like the spit up patrol. Always ready to get the burp cloth and wipey. He's going to be an awesome big brother in his big boy room. Just need to make sure Will doesn't fall on the new baby and squash it :-)
I just love the expression on my future godson's face... Cameron is like, do what?? What is this big guy doing under here with me?
Let me rewind to July/August 2010. Will's pedi recommended we call ECI - Early Childhood Intervention - to get therapy started. Insert MAJOR skepticism on our part. Really? A state program that will provide therapy? This sounds sketchy.
So we got started with the ever infamous "case manager" and "assessment" process who helped us identify what we qualify for in regards to therapy. Insert Mr. George, as we affectionately call him.
I still remember our first appt. Mr. George brought in this $3 IKEA bench and an exercise ball. Will could not sit to stand off that bench. In retrospect, he really was a floppy mess. It was eye opening. Depressing and exciting all at the same time. We had NO idea what was wrong, but PT felt like we were taking action, making progress. And progress we made! (BTW: I now own three of these IKEA benches :-)
Mr. George, and the other ECI therapists we love and will receive a post soon, could technically have been called MY first (mental) therapists as well. He was this connection to a world I knew nothing about. I'm sure he dreaded seeing me with my unending questions about the future and how Will was REALLLY doing and what did he think was wrong. Luckily, Will is so stinking cute that George tolerated me :-)
George showed me how to help Will do exercises at home and a short four months into therapy Will took his first few independent steps and finally on Christmas day he just took off walking. Now, nearly a year after walking his stability has significantly improved and we're working on climbing stairs.
People joke that I have Will in 24/7 therapy. There was a really long time period where I ran around behind his every move to make sure he was in the correct form and using the big muscles instead of relying on this "tricks" he used to get around. I would make him redo it correctly if he cheated. Every night we came home and did ball exercises. I put on the music channel and we "danced" with the ball. So on... I've edged of some.
We have no idea if Will is ever going to be able to run, jump, ride a bike and so on, but George gave us a gift that I truly believe no one else could have done as effectively or with the same intensity of love, he gave Will independence.
I could go on for literally days about how wonderful Mr. George has been. He has left an impact on our lives that I didn't expect. Will absolutely loves this man. He shrieks with excitement when I tell him Mr. George is coming and waits by the door for him to arrive. I dread thinking of the day when ECI services end (at age 3, that's April...) and not having him be part of Will's life. What the most insane part about this is to me is George makes him WORK. I mean, he puts him through the ringer and Will still loves seeing him. Will grunts and is clearly working hard. Obviously their bond is strong.
Today I tried to capture some pictures from therapy. Please join me in saying a HUGE THANK YOU to Mr. George, his bag of tricks and his pure heart. He will always be part of our lives.
Got the weight belt on, getting warmed up.
I should bring another ball and do the exercises with Will too :-) They are HARD!
The only person I know who lets kids kick his toys and his cell phone.
Dr.: you can have more of your own biological kids
Martin's: Really? Are you sure?
Martin's: Ok, this is awesome. Finally a positive.
Mito Specialist Dr: Sorry to again be the bearer of bad news, but no, I would strongly advise against any more biological children.
That's kind of the conversation we've had with multiple doctors in the past two weeks (as you've seen on previous postings) and the last one happened this morning.
Mito really is a mess.
Here's your science lesson for the day folks. Each cell has it's own nucleus and cytoplasm (the liquid area around the nucleus inside the cell.) The nucleus has its own identical mix of DNA and mito, while each part of the cytoplasm has different mitochondria. Each cell has identical nucleus, but NOT identical cytoplasm mitochondria.
The IVF procedure we were going to do involved extracting A SINGLE cell from the 8 cells that make up an embryo on the third day and testing only ONE cell for the mutation. The mutation lives in the cytoplasm.
Therefore, we'd have to test all eight cells cytoplasm to see if they have the mutation in the mitochondria. If we did that, we'd have no embryo left to implant.
So, that means we're back to the egg donor option.
I can't tell you how crushed I am. We both are.
One thing people always tell me about Will is that he has my color of eyes and that they are really quite spectacular :-) There's something very narcissistic about that I'm sure, but to me it's this beautiful gift I gave Will. One that complements the dimples Neil and I both gave him. All these so-called gifts in our genetics.
I just have this overwhelming dread about when someone asks me about these other petri-dish kiddos "oh, who does he look more like?" Well, certainly not me! Granted we will pick someone that favors me and I know there is plenty of data that says biology or not, you end up taking on characteristics of your environment. Well today I say screw that. I don't care.
This whole other IVF option felt like finally something was going our way, it felt easy and controlled. We could plan out what we wanted without the help of an egg donor or adoption agency etc.
I know at the end of the day it will all work out.
It's kind of funny though. When we thought we could have more bio kids, we were so excited that day. It lasted about five minutes. It doesn't take away all the hurt, pain and grief we are/will experience with Will. In fact, it kind of furthered that anguish. Why did Will get the crummy end of the stick here?
I'll post something positive tomorrow, but for tonight. Misery loves company and since you've actually chosen to read this, you're by default, my company :-) I think I'll make scrambled eggs for dinner tonight; oh wait, I already have some scrambled eggs. haha. I know, that was a bad joke. Goodnight.
Hard to believe it's been three months since we found out Will has Leigh's Disease. Neil pointed out to me this morning that he thinks he has more gray hair. I have noticed my hair coloring appointments increasing in frequency myself. :-)
We've accomplished a lot in three months, but it feels like we have such a long road ahead. Ok, we DO have a long road ahead! :-)
Let's celebrate today some good wins though:
-Medicaid is almost signed sealed and delivered
-We researched, met with various doctors and found out we can have more biological kids
-Will hasn't been sick, except that one time with vomitting. Knock on wood. Seriously, do it right now.
-We were accepted to Stanford, went for the baseline testing and are on EPI-743
-Countless hours of therapy with Mr. George, Ms. Risa and Ms. Melissa. Need we forget the "24/7" therapy I try and do at home continue to improve his walking and stability.
-So much therapy that he's able to chew crackers now!
-Raised money and awareness for this disease
-Neil and I don't cry every day
Ok, blog friends, I can't decide. This coming from the girl who literally, every year, was a witch for Halloween. No tacky jokes are needed here people. (ahem...)
What should we do for Will's Halloween costume? I've asked him multiple times and get different answers... Everything from Barney to Macaroni and Cheese.
Here's what I've come up with so far.
-Fireman: see previous posts as to why
-Doctor: this ones a tad obvious, and perhaps too depressing
What else!?!? My craftiness and budget are is somewhat limited, so let's not get too crazy. And nothing that would be super hot to wear. We don't need an overheated pumpkin. Please post your ideas in the comments area!
I'm really sad though, the Halloween Parade at school is on a morning that he has a doctors appointment with an immunologist. On top of that, I have a work obligation that morning and can't go to the doctor with Neil and Will either. Guess that means we'll have to do some extra special fun on Halloween. :-)
Last year, Will was a pirate (or Italian gondola driver).
Back then he had something called S.P.I.O. suit. It was a black two piece long sleeve shirt and long pants. It was meant to help give him sensory input to help better understand where his body was in relationship to space. It really helped a lot and was the basis of my costume creation. I borrowed a red and white striped shirt from Will's cousin, cut up and knotted one of Neil's old shirts and preso! I think the mustache ala my eyeliner was what made the whole costume.
This was at the Halloween Parade at school.
At the park with Cheerleader Caroline
I couldn't resist... Caroline, her daddy and very pregnant Mommy on the see-saw at the park. Hopefully they don't denounce us as friends or godparents for this picture :-)
And now for a little monkeying around with Will's first Halloween...
So... I took a nice long break from posting anything really meaningful. :-) It's emotionally draining sometimes to do this blog, but I love doing it for many reasons. This blog has probably been one of the most surprising things I make time to do. I apologize to all those who have done something for us, but haven't received a thank you note. I have a long list, don't worry, it will come one day. I even managed to remember to buy stamps at the grocery store so I'm on my way.
I haven't been lounging poolside during this brief blog break. Some of you might remember my previous post on Medicaid. It's quite a process to get signed up and it's outlined in the "Things I Never Thought I'd Say" post, linked above, so I won't recap the whole process, but the last big step was completed this weekend - an overnight trip to a nursing home.
Don't ask why or how, just go with me on it. Let me add that some families have to do a 30 DAY stay, not just a 24 HOUR. I don't know if we could have managed that ugly experience.
So, there are only like five or eight nursing homes in the state of Texas that have a room set aside for children in this MDCP program. The closest one to Houston is Pasadena. They were booked till May. So, next closest - the big bustling town of Vidor, Texas, located just east of Beaumont. They had plenty of openings.
So, Will and I loaded up on Sunday afternoon, stopped for dinner in Beaumont - Vidor only has fast food - then headed on to check in and have somewhat an out of body experience. The people there were amazing, nice and very sweet. I can't say enough great things about their team. Very professional and efficient.
We said hello to a couple of the residents, those that were able to move around, and Will thought that was great. We did a bunch of paper work, did blood pressure and an overall body check and went to bed. A few hours later we hightailed it out of town, ate breakfast at McDonalds with all three of the Vidor Policemen and some pimply high school kids.
So all that sounds pretty normal. Here are some of the odd parts:
-The home is located in a neighborhood; imagine leaving for work and driving past the nursing home every day. It kind of creeped me out. There is a day care right across the street. "Kidz R Kidz"
-About 10:30 p.m. the night nurses knocked loudly and came in to introduce themselves. Mind you, Will and I are both asleep mashed up together on a twin bed, that creaked. Will sat up quicker than I've ever seen him do before, gave them a disgusted look and fell back in bed.
-The nurse couldn't figure out how to do the temp scan on the forehead. I asked her if she wanted me to try and she said sure. So I did it the same way she did, and it worked. ???
-There was loud music playing in the hall till about 4 a.m. ?? Couldn't tell if it was the residents or the nurses or a TV. I thought I was back in a college dorm.
-When you came into the building there was a fake fireplace with a "fire" and four leather LaZBoys with two leather couches. Modern in look. Then the rest of the place was like something out of the 1940s. I really wanted to take a picture, but I didn't want to be rude.
-Will thought the bird feeder out front was a fun new toy - that's not really weird, just kind of cute.
Anyways, overall, it was fine. I won't go into details on all the moaning, yelling and disturbing scenes as we passed the cafeteria during breakfast. Suffice to say, we checked the box.
I do want to send a special shout out to a wonderful lady, you know who you are. Thank you so much for trying to help us pull some strings with your contacts in Bellville and Austin to avoid this. We really, really appreciate it and one day, you'll get a thank you card :-)
Here are a few pictures from the 12 hour visit to, what I told Will, was called a hotel...
They really tried to make the room kid friendly with a cute lamp, rug and art on the wall.
Notice the small bag next to the bed. I literally only packed Will some clothes and my contact solution and toothbrush.
Saying Cheese before bedtime
Just turned off the ipad (the best money I've ever spent).
I called our MDCP case manager on the way back and he confirmed later on Monday that now we're just waiting for our ID number! The state has 45 days to respond with it, but Roderic said it usually only takes three weeks.
Let's assume we get an ID number by Nov. 1. If that's the case, this has been an amazingly quick process. Four months. That's insane! Of course, we've made this a big priority to get finished and Roderic our case worker is remarkably efficient. I really like him, good guy. After just paying thousands of dollars in medical bills (and that's with insurance) I'm just so relieved this is almost done, just in time for cold and flu season.
I just proofed my post and had to roll my eyes at myself. When did I get so excited about getting a government hand out?
Happy Tuesday! Who is loving this cooler weather!?!?
Have you been thinking about giving money to UMDF to help fund research to find a cure for Mito? Might I suggest tomorrow be the day!
REMINDER TOMORROW IS the Pittsburgh Foundation's "Day of Giving".
You can help the United Mitochondrial Disease Foundation raise valuable matching funds from The Pittsburgh Foundation on Tuesday, October 4th when you make a credit card gift to UMDF through the www.pittsburghgives.org website.
The Pittsburgh Foundation has designated October 4th as a “Day of Giving” and for a 24-hour period will provide matching monies to gifts given through “PittsburghGives.” The website -- www.pittsburghgives.org -- was developed by The Pittsburgh Foundation to help donors learn about the mission, programs, leadership and financial information of some 400 nonprofits like UMDF.
Please remember that the matching period is Tuesday October 4, 2011 from
Midnight to 11:59:59 p.m.
You will have 24 hours to give! All credit card contributions on the “PittsburghGives” site during this period will receive a portion of the matching dollars.
All are welcome to make a gift; you do not have to be a Pittsburgh or Western Pennsylvania resident to participate. To help UMDF raise matching funds you must go to www.pittsburghgives.org -- follow the directions, and make your credit card donation of
$25 or more to UMDF on that site.