A Kid Is A Kid Is A Kid....

So this blog is usually about my kids, but today I'm going to talk about three other kids:

Monika Martic, Alex Skrabski & Kayla McCauley--They are high school kids doing college course work and work study through Ohio College Tech Prep.

I've never met these kids, but my husband is mentoring them through his work, Avery Dennison. He has done this for several years and this year these hardworking kids have managed to win the regional & state competetion for the mobile app they designed and can now move on to 2011 SkillsUSA National Leadership competition. 

Or can they?

They expected to receive more financial assistance from their high school, but they are not. Avery has kicked in everything they can and a couple of other companies have kicked in some cash, but they are still about $3,000 short of their goal.

This blog explains the project.

They might not be my kids, but they are someone elses hardworking kids and they deserve this chance to shine.

If you can spare a few dollars and help them out, please donate here.

Look at it as an investment in all of our futures!  

Thank you!

Going Up

Nolan's platelet count was 369,000 today. That is awesome news!
Raegan, Nolan's nurse, (ironic, huh) warned me to not get too excited as they could still fall, but we'll take this victory and try not to think about it for one week when he has the next blood draw.

I still can't help feel like I need to hold him back from being rough and tumble with his sister and friends. I've told him NO so many times when he asks to do things that it has become my standard answer. He has taken it all very well and, for the most part, not done the things I've told him to do. His gestapo sister has also helped keep him in line. They were playing at the neighbors (diagonally behind us) and I was sitting on our deck and I could hear her telling Nolan, "remember you are not allowed to bounce in the trampoline."

We will just keep doing quiet things, like visit our animal friends at the zoo, play at the Botanical Garden, and visit all the local libraries, while slowly working back in the other stuff.

A Breath

Nolan's count on 5/20/10 was 203,000! That is a great number and in the normal range. His little body just has to keep producing those platelets and not eating them up. He has a blood draw next Wednesday, so we have a few days to catch our breath until then.

Keep those prayers coming!

Nolan got a message from Sacramento, CA for his "Prayer Pics For Nolan" from my friend Nancy

And Today's Number Is....

Platelet count for today 67,000. Normal is 150,000-450,000.

Before the treatment yesterday, they were 23,000. At that number they restrict kids from anything that could cause a bruise or internal bleeding. No trampoline, no bike riding, no bouncing on the bed, etc. I've even read that doctors have taken away kids rocking chairs when they go below 20,000. (What made that story even harder to swallow was that the child had autism and that was his comfort mechanism.)

Keep the prayers and thoughts coming that these #'s continue to rise and stay there.

They consider anything over 50,000 out of the danger zone for serious (and internal) bleeds, so that takes a little weight from my shoulders for this moment.

He sure doesn't look or act sick, does he?

Here is another "Prayer Pic for Nolan" from my friend, Samantha. She and I were co-workers and were pregnant together.

I can't say it enough, but we are so thankful for everyone's thoughts and prayers. Friends have added him to large prayer groups, Reagan told the lady parked next to us at Aldi about him today and she said she would pray for him, and all the virtual hugs and thoughts are a comfort. As our friend, Diane, who brought us a great quiche and two pies for dinner (thanks again Diane!), said last night, "how could he not get better with all these people praying for him!"

It is hard for me, as his mom, to not focus on the negative of the research I've been doing (google is your friend....sometimes!) . It is the hardest thing you have to do when you have to watch your child suffer and you can't do a darn thing about it.

Today's rise is a step towards victory, but there is still a long way to go, and as we've learned quickly, it is a roller coaster.

Nolan Update

I took Nolan to the hemotology clinic at CCF (which is also the children's oncology clinic) this morning. The plan was to be seen and treated there instead of being admitted to the hospital as long as I was comfortable taking him home.


the numbing cream was put on his ridiculously bruised arms, I met with the doctor and fellow who will be on Nolan's case. Of course, there will be no immediate answers. This could resolve in a few weeks, months or never. It's just wait and see and we all know how patient I am.

They decided since the IVIG didn't work as they hoped, that we would try a new medicine, WINRHO. Two blown veins and three sticks later, the IV was finally in. It was terrible. My heart actually hurt for him. The transfusion took a lot less time than the IVIG, 20 minutes as compared to 4 hours, so I was thankful for that. We are home now, but have to go back in tomorrow for a blood draw.

Today's experience was way more traumatic than the ER/ambulance/hospital stay for both Nolan and I. The blown veins were painful for him and hard for me as his parent to watch him be poked over and over with no success.

The reality has set in that this is something that is going to affect our lives for the indefinite future and severly limit the activities Nolan (and therefore Reagan) will be able to do.

Once again, your thoughts and prayers are appeciated by us all. We are lucky to have so many caring people in our lives.

Today's Prayer Pics For Nolan....And He Needs Them

Nolan's platelet count dropped to 18,000 so it is back to the hospital for him on Tuesday morning for another round of IVIG. Of course, he couldn't be in the 90% that only need 1 round and are fine. :(

As I posted yesterday, my friend Ashley started a "Prayer Pics For Nolan" campaign and we got some really cool ones today. Thanks again, Ashley! It is heartwarming to know that people took the time out of their day to think of my little guy (and his twin sis, too.)

The Zahn family- Clearwater FL.

The Lin Family Chesterland, OH

Mercer Babies San Diego, CA 

 The Augustine Family Eastlake, OH

Eadon Family, Cleveland OH

Fatima Gomez- Catalina Island, CA

(I would really like to visit Fatima and thank her in person, beautiful, right?!)



Thank you everyone that has posted messages on facebook and called us. We all appreicate it very much.

Prayer Pics for Nolan

I received an email from my friend, Ashley, today. It made me cry until Nolan came along and saw his name on the computer and thought it was really "cool beans."

It touched me deeply, that even though Ash is far away and has way more than enough on her plate (she is a Navy Wife and currently a single parent to two little ones while her hubby is off keeping us safe and catching the bads guys while aboard the USS Vinson), she is still thinking about my little boy.

Here is the email.....

"So I read this blog a while back that this lady wrote, and her baby was sick. She asked her readers to say prayers, and as evidence that they were listening they took pictures of the babies name in cool places. She ended up getting pics of his name by the Eiffel Tower, at the beach, ect. ect.


So since I can't do anything else to help out- I am started "Prayer Pics for Nolan." (and of course for Reagan too.)


Here are ours- sidewalk chalk.

Prayers headed your way from San Diego. I think you should spread the word ;)
Good luck with everything. Thanks for keeping me updated."


So, if anyone is inclined, send me a picture and where it was taken and I will post it.

I know so many people have us in their thoughts already and for that, our family is thankful. Nolan's had a few challenges in his short life already and this is yet another one we will tackle together; with the thoughts and prayers of our friends and family holding us up.

Blog Goes Up, Blog Goes Down....Just Like Platelet Counts

Just to keep the fam/friends not on facebook up-to-date (sorry it wasn't sooner, blogger has been down for almost 2 days).....

We got a call on Wednesday that Nolan's counts were up to 69,000. A nice jump from 37,000. He was still not allowed to be "normal" though and we were told once his counts get over 100,000 then he can go back to being rough and tumble with no worries for internal bleeding. They told me to make an appt with our primary doc and have his levels rechecked in one week. As soon as we hung up, I got that appt. scheduled.

Thursday rolled around and I got a call from the Cleveland Clinic that they want to monitor Nolan a bit more closelyand had assigned a hemotologist to him (my guess is because of his cranio surgery, but no one is telling me that.) They wanted him to get bloodwork on Friday to check the count.

I went about my day on Friday thinking they were going to call back and tell me Nolan could go back to riding his bike and bouncing on the trampoline. That was not the case. When they called back at 3p with the results, his platelet count dropped to 48,000.

What does this mean? More bloodwork on Monday. If the numbers are down again then he will be readmitted to CCF.

This is one roller coaster I don't want my boy to be on.

He seems outwardly fine. He doesn't complain about anything and wants to do all the things he is not allowed. It is so hard to keep him down!

Full Circle

So I never imagined I'd spent another May 10th in a hospital. The last one was pretty eventful and certainly could never be topped.

But, as fate would have it, there we were in the wee hours of May 10 back in a hospital.

We were missing one. And missing her a lot. When Nolan's night nurse came in for his 4am vitals, she wished him a Happy Birthday and he said, "Yeah, and its my sister, Reagan's birthday too. She is home with Dad. I miss her." My gosh, that boy knows how to get to me.

 Nolan was diagosed with Immune thrombocytopenic purpura; ITP. Idiopathic thrombocytopenic purpura is a bleeding disorder in which the immune system destroys platelets, which are necessary for normal blood clotting. Persons with the disease have too few platelets in the blood.

It was looking like we would spending the whole day (and another night) in the hospital, in fact Miss Sarah from "Child Life" came by to plan a birthday party for the twinadoes, but when that news came down that  Nolan had responded so well to the first IVIG infusion that he would not need another and we could go home!

They waited for Reagan to arrive and then they brought the cake and sang and then came the gifts. Three for each of them. Three really nice gifts.

Of course, I cried.

It's a rarity that your child has to spend his birthday in the hospital, but the folks at Cleveland Clinic sure made it a day to remember. Even if Mommy wants to forget parts of it! Reagan made out, no pain and she still got the loot!

We were in the car on the way home when 1:05pm struck. The moment Reagan was born. And then a minute later, Nolan.

I didn't care. We were together and that was all that mattered.

Nolan's Big Ambulance Ride

So here is the whole story of how Nolan and I ended up on our first ambulance ride together today.

Nolan had been really sick starting 10 days ago. We took him to the doctor a week ago Saturday and was told it was "viral" and would run its course. He was not better by Wednesday and started to complain (I mean Nolan doesn't complain about much, but he was really fussy and uncomfortable) about his ear hurting, so we went back to the doctor and they gave him a 'script for Amoxicillin to get filled "if he needed it on Thursday." He was not any better with just the ibuprofen, so I got the script filled and started giving it to him on Thursday.

He has seemed fine since then and had a ball at his birthday party on Sunday. When Bill was putting his PJ's on Sunday night, he looked shocked when he pulled down Nolan's pants and saw his shins COVERED in bruises. We thought maybe he just played hard at his party, but when he got up Monday morning, it was apparent that the bruising issue was getting worse. He got a large purple welt in his elbow and that is when I called his peds office.

They asked me to look on his body for a red pin-point rash and sure enough, we found some spots under his left arm (more appeared on his back later.) She said that with those symptoms she had to advise me to get him to the nearest ER. She asked which was closest and I said Lake West and I said I’d rather take him to Hillcrest since they have a peds ER. She said she could not tell me to do that since she had to advise me to take him to the nearest ER, but if it was a matter of a couple of minutes than I should make the choice. So, off to Hillcrest we went. Bill was home sick, so we all went thinking it would be a quick trip. Not so. The ER doc knew what it was pretty much right off the bat and bloodwork confirmed it. (If you ever need to take your kid to the ER go to Hillcrest. We've experienced both Hillcrest and Lake West and there is a world of difference.)

Idiopathic thrombocytopenic purpura (ITP). Idiopathic thrombocytopenic purpura is a bleeding disorder in which the immune system destroys platelets, which are necessary for normal blood clotting. Persons with the disease have too few platelets in the blood. With Nolan’s cranio history, they did not want to take any chances of a brain bleed, so they transported us by ambulance (and a very cute life flight crew) to Cleveland Clinic’s main campus downtown.

He began a 4 hour course of IV treatment called IVIG that is supposed to “re-set” his body so it will start creating platelets and not attack them.

Fingers crossed that this works and he will only need one course. That is the case in 80% of kids.

I asked if I missed any signs and they said no. The bruising is the first.

We’ll probably be celebrating the twinadoes 4th birthdays in the hospital, but that is OK, we will all be together and that is all that matters.

Thanks again for everyones emails, texts, calls, posts, and thoughts and prayers. Our family appreciates it.

Good night from M50.

Daddy brought Nolan all his "stuff" he needs to sleep with. Lightning blanket, bear from the buena vista in san fran, and a glow in the dark star. special thanks to Aunt Jan Ross who started the nightly singing of Twinkle, Twinkle tonight....Mommy didn't have it in her.

Another Loss

I got another one of those calls last night. Just like that call that came January 5 to tell us about Jimmy's plane crash. This time it was my friend. Tragic circumstances.

Thank goodness Bill is home today working in the yard with the kids because I am walking around with my mind in a daze and constant tears. I sit here trying to think of how I'm going to tell them about their friend.

You see, Stephanie and I have known each other almost since we were born. Our birthdays are 5 weeks apart and we met when I moved to the neighborhood in July of 1973. I had just turned one (we literally moved ON my first birthday) and she was lived down the street. Steph's mom, Connie, and my mom became best friends and still are today. We used to trick-or-treat together.

Stephie moved a few years later, but our families still kept in touch. I used to love to go to their house in Perry. It had a great yard and lots of room to run and play.

You remember that Duran Duran concert? The one where my Dad drove us and sat in the parking lot in a giant snowstorm? Steph and Connie were with us.

In high school and college we didn't keep in touch much, but I always knew what she was up to since Connie and my mom remained close.

Steph was at my wedding shower, my wedding, my baby shower. She held my kids when they were just days old.

 She would come over with her mom and my mom and babysit for us. She cleaned up my kids "kitty barf" the night my mom gave one of them too much candy. My kids loved her and she them. She has pictures of them all over her office and house.

We bumped into each other at Old Navy in December. We talked about getting together some Friday for lunch when the weather got better. What were we waiting for and why should the weather have stopped us? Regrets, I've had a few. Add that one to the pile.

I sit and think of how I'm going to explain this to my kids. Steph,along with her two beloved cats, died from carbon monoxide inhalation from a kitchen fire. The fire put itself out and no one knew anything until the next day when she didn't show up for Easter dinner.

Ironically, for the past few weeks my kids have been into talking about fire safety. They know stop-drop-roll, call 911, feel the door before opening, they have a ladder in their room, we check the batteries in our smoke detector and they know the family meeting spot outside. Nolan worries about fire and sometimes at night asks me if we will ever have a fire in our house.

There is a lesson here, but I have no idea how to teach it through the pain.

Yesterday while we were cooking dinner, some bread got left under the broiler for too long and the alarm went off. Nolan was heading for the door until we reassured him that it was OK to stay in the house. Maybe that was Steph on her way to the other side, stopping by one more time to say goodbye.

Friends, and you all are my friends if you are reading this.....please check the batteries in your smoke detector. If you don't have one, call your local fire dept. Ours will come and install them for you FOR FREE. They will even give you reminder calls to check your batteries. No one needs to go through this pain.

Hoppin Our Way Towards Easter

I have been lax in blogging, so thanks Ash for the email to get me back on track!

Here's what we've been up to:

Nolan likes the bunny this year!!!!! We went to the mall last week and he was cuddlin' up to the bunny telling him that he wanted a forklift and a Grave Digger monster truck. They also got to ride the track-less train with Grammy.

We also visited Peter Rabbit's Egg Factory (a program put on by Lake Metroparks). There are lots of games, a chance to visit the Easter Bunny, an egg hunt, and a really cool egg factory where you get an egg to start and you wash it, color it, dry it, weigh it, and send it through the pipes to see if you are a "good egg." It's a really cute set-up and a lot of work, especially when the egg hunt has to be inside due to rain & wind. It was fun to see so many of our Moms of Multiples friends, too.

The bunny giving Reagan's egg an x-ray.

 Oh, I hope it comes down this chute!

 Indoor egg hunt.

 decorating cookies.

They gave the bunny a great big squeeze and it looked like Nolan was going to take a bite out of him!

Then it was on to an ice skating birthday party for their friend, Cora. The twinadoes have never been ice skating and where very excited to give it a try. Nolan took to it like a duck takes to water. Reagan; not so much. She did finally give it a try about 30 minutes before the end of the party with a little bribery from cousin Taylor. To all of our surprises, she liked it! I hope she learned the lesson about not giving up and giving new things a try. She did great!

Miss Jen giving Nolan a little help for his first time on the ice. It was cousin Taylors first time, too!

 Nolan and his new "best friend" Michael.

 Reagan giving it a try!

The kids also figured out how to get their bikes "stuck" so the back wheel would just spin and spin. Of course, they figured this out right over a big puddle. What they did not figure out was that they should not be behind the bike when the rider starts peddling. Or maybe I am wrong and that was the most fun part!

We took in an "eggstravganza" at the local library. There was lots of singing, stories, and a craft. I had to laugh when we got there.....there is all this space to sit down and this is how they ended up.

I love that they have each other. It makes this only-child so happy to know that (when they want it and even when they don't) they will have a playmate, a friend, a sibling. It was just one of those moments to remind me how grateful I am that things worked the way they did for us.

Bill and I are very lucky parents.



Ka-Chow

We got to see the life size versions of Lightning McQueen & Tow-Mater. I'm not sure if the kids were more excited or if I was. I really, really like the movie Cars. It is the only Disney movie my kids will watch, so it means I only have Cars merch all over the house and not a million princess' or robots.

The tour stopped at Great Northern Mall, which might as well be in Indiana as far as I'm concerned. The weather was awful, driving rain and gusty winds, but that didn't stop us! Luckily, Aunt Jan and Aunt Deb went along for the ride.

The mall has a cute (brown as opposed to the Great Lakes Mall's white bunny) Easter bunny and a train that goes through the mall; no track. It is $3pp and about a 10 minute ride, but it beats 3 times around the oval at other holiday events that cost the same.

Since we were on that side of town, a stop at Fatheads for lunch was in order.....meaning Bill got his growler (that he so kindly left in my car this morning as a hint) filled with Imperial Headhunter IPA. No matter what he says, I am a good wife ;)

Long Time, No Post

Wow. It's been a month.

February was full of editing. I did a job for Kirtland Elementary School's Princess Prom that was 200+ portraits of father/daughters and then a bunch of candids. I also did a marathon session with Baby Amelia, a cousin.....of sorts. Not sure how I left the session without packing her in the props bin. What a doll.

I also have started < drum roll please > working out. And enjoying it.  I am not allowed to swim the "normal" way yet (another 3 months probs) and haven't given the kickboard method a try, but the heavens have opened and somewhere I found a piece of the mojo I had before the twinadoes came along.

Actually, Deb joined the Y and basically said I'd better get there with her or else! I like having a work-out buddy as it makes the 40 minutes on the treadmill go pretty fast. We've had a few good laughs too. Like the other day when I nearly strangled myself to get my headphones plugged in to hear an access hollywood interview with Simon LeBon and John Taylor of Duran Duran. Guess Deb now knows how far my Duran love really does run.

So it's been about 6 weeks of 3x/week working out. 2+ miles on the treadmill (40 minutes), 2 miles on the bike, and a few minutes on the arm bike to help my shoulder in the recovery process. Here's the kicker. The first 3 weeks I got on the scale once a week and hadn't lost ONE FREAKIN' POUND. I stopped getting on the scale because it was driving me insane. I know that I am moving 12 miles more per week than I had been. I have more energy. It feels good to sweat. It has to be having a positive effect somewhere.

In another "heavens open" moment, we (Bill and I, yes Bill AND I) have gone out TOGETHER the last 3 Saturdays and have another one coming up this weekend. Mark your calendars, friends. This hasn't happen since April 2007. We hit up a friends and fam night at Harvest restaurant, Michael Longo's awesome new place in Solon, a birthday party, a co-ed baby shower (at Buckeye Beer Engine--genius), and coming up this Saturday we will be attending, what Deb has dubbed, "The Coranation of Bob." Our Bobabooey is being crowned, "Exhaulted Ruler" (no joke) at the Elks Lodge. Big props to my Mom, Jen, and Taylor who have allowed this to happen.

So, I looked back at the pictures for March and this is what we have done:

2 Dr. Seuss' Birthday celebrations

I photographed Orchid Mania at the Botanical Garden had lunch at Mama Santas

Went to a "Meet the Opposum" program at the Wildlife Center/Pen Glen

Uncle Bob came into town and he was the kids "special guest" at story time

It snowed. A lot. Two Fridays during the month were a complete mess.

Nolan's yearly follow-up with Dr. Papay. All is good. Better than good, actually.

Twinadoes earned a trip to Chuck E. Cheese by filling up their marble jars.

St. Patrick's Day Parade, enjoyed from the 8th floor balcony of the Embassy Suites.

Cousin Jim's Art Show at Pen Glen

1st trip to the zoo of the year, with a stop at Happy Dog on the way home.

There's still 7 more days left, too!

Sunday, Sunday, Sunday

As a parent, you do things for your kids that you never imagined yourself doing.

cue < Crazy Train>

It was an interesting event to photograph and the freestyle stuff at the end was fun, but the rest of the show was an entire commercial for monster truck jam merch with a bit of WWF action thrown in for good measure. The 4-wheeler racers, some from CLE and some from Pittsburgh, got into a "fight" after their race. Helmets were thrown, dirt was kicked up, and gums were flappin'. Exactly what we want to be teaching our children about good sportsmanship, right?!

I guess all that mattered is the kids had a good time and the only crap we came home with was a program and 2 jolly roger flags with Grave Digger Racing (in very small letters). I can handle that, as opposed to the foam Grave Digger hat filled with cotton candy that was going for $15.

Next year, (if there is a next year for us) I think I'll sit it out and have it be a twinado/Daddy/Uncle John/Sam event. Once was plenty for me.

Pictures here.

Happy Valentine's Day

I am lucky to spend the day with my two sweeties and then the evening with Aunt Deb at a library presentation about ghosts in downtown Willoughby. Romance Smomance.

Here's my Valentine's from their very first Valentine's day. I so wish for them to be that small again. Too many life-changing decisions to make as they grow up so fast!

Nolan was only 5 weeks post cranio surgery in these!

Day 27 - A Picture of Yourself and a Family Member

This was the first time Papa met the twinadoes. They were 11 days old. He was their only Great-Grandparent and my last Grandparent. He was a character! He left us this past June. I'm glad my kids got to know if a little bit.

Day 26 - A Picture of Something that means a lot to You

1979 Bally's Supersonic Pinball Machine. My Dad and I bought one of these together when I was about 18. We played it for hours. When the novelty wore off for me, my Dad still played it. He would go do in the basement with his beer on a weekend and play and play and play.

The Supersonic is now in my basement. It needs some work. Some lights are out and things aren't hooked up just right. That doesn't matter to my kids. They love it.

I know my Dad would have loved to have played it with them.

Day 25 - A Picture of Your day

Had another post-op visit. Shoulder is too stiff for the surgeons liking, so I got some cortisone. It's not that bad. Just like a bee sting. Hoping this aids the recovery. He said I should notice a huge improvement in a week.