Raising Rare Boys - Cure Hunter Syndrome

Support us and the National MPS Society with our CrowdRise fundraiser, if we get 10 donations of any value starting December 9th we could be one of the fundraisers/charities entered to win $10,000 USD. Thank you!

 https://www.crowdrise.com/raisingrareboys/fundraiser/amycherrstrom

Surgery Day + GivingTuesday + 9 Days until Nick's 4th Birthday

Today is a big day for our family.

Nicholas (Nick) is 3 years old and has MPS II, Hunter Syndrome, a rare and devastating disease that only affects boys.  This disease causes him to be missing a key enzyme that facilitates the break down of waste cells, and without this enzyme he cannot purge these waste cells from his body.  This waste acts as a toxin, and builds up and gums up the works of vital organs, joints, including one's brain.

Nick's Surgery

Today, Nick is getting a port implanted to begin his participation in a clinical trial.  This is a tough day for us, as no one wants to see someone so small suffer or go through a surgery, and all surgeries carry risks.  For our family though, we're a rare disease family, we're accustom to facing these things head on with all the courage and bravery we can muster.

Please think of Nick today, and our family.  Help us hope for the best possible outcome.

Giving Tuesday

Interestingly, this day, a momentous day in history for us aligns with the start of #GivingTuesday (Giving Tuesday ends the 2nd of December). This is the start of a season of giving where we support our favorite causes, those that speak to us. Please consider picking us as your cause.  Alex is home today in Cleveland, as he does not qualify for this clinical trial.  We currently don't have any treatment options to affect his brain, and improve cognitive function.  We would love to win one of the monetary prizes CrowdRise offers (up to $250,000) for MPS II research!

Here is a link to our CrowdRise

https://www.crowdrise.com/RaisingRareBoys/fundraiser/amycherrstrom

Maybe consider giving $3, $4, $9, or $25 in honor of two things - Nick's upcoming birthday on December 3rd where he will turn 4 and today's date where he will become part of a clinical trial that our Hunter Syndrome community holds dearly to help save our children.

If not consider supporting some of the precious organizations that provide so much hope to our families, here are a few:

http://mpssociety.org/

http://globalgenes.org/

Ann & Robert H. Lurie Children's Hospital, specifically the Genetics Department (Dr. Burton)

Nationwide Children's Hospital, Center for Gene Therapy, http://www.nationwidechildrens.org/

University Hospitals, Rainbow Babies & Children's Hospital: http://www.uhgiving.org/uh-giving, specifically Rainbow Rehab (speech therapy, audiology)

Have a wonderful holiday season!

The Cherrstroms

Friendship

Color for Alex - Show him he has Friends!

https://dl.dropboxusercontent.com/u/23993460/Al_Pal_Coloring_Page.pdf

One weekend Nick said to me, "I have a best friend.".  I said, "Really, who is your best friend?".  He said the boy's name, and then he said, "He is my best friend."  I said, "How do you know he's your best friend?".  He said" because I like him and we play".  I said you have other friends too, and we listed them out.  He said, "he is my best friend." That's the kind of conversation that just warms your heart.

We mostly think about surviving Hunter Syndrome, but the quality of a person's life is just as important. Nick is living a good life with a best friend.  How endearing!  We don't think about this until we have to...each clinical trial visit there's a parent interview where I have to answer a lot of questions about our kids.  There's one question that is absolutely beginning to destroy me.

"Does Alex have any friends?" 

In my mind I think...

Jack has a best friend.  Nick has friends.  Does Alex have friends?  I don't think he does. How could anyone not have friends?  He has to have one...think, think.  He has his brothers but those are his brothers.  I think he stands by people but does that make them his friend?  People try to play with him but that's probably not a friend either.  I know children have been told to be his friend. I wonder if the other special needs children have friends in his current class.  I know Jack appreciates special needs kids more and that they need friends too. Maybe he has friends and I just don't know about  it.  She needs an answer to her question, answer her...the answer is "No".

Then this comes out: "Would you be friends with Alex?  He's big and intimidating.  He doesn't talk very much so there's not much engagement.   In typical classrooms, I see children run away from him or look scared. It's sad.  I cannot completely blame them because he used to bite or pinch but he doesn't do that anymore. I am hoping this improves.  I hope he gets a friend."

Alex is not only being robbed by Hunter Syndrome of his ability to communicate verbally, to have a healthy body, even his life, but he's being robbed of friendship...the gift of friendship and I know it is a gift. Alex is a child who has feelings, has deep love, and we receive a lot of his affectionate hugs.  I know he has the desire for a friend.

I recently told one of my friend's mom's, "that being friends with your daughter is a gift".  It's a treasure, a gift like no other gift. The gift of unconditional love that doesn't come from a sister or a brother but someone who chooses to be your friend.  I would never be described as really emotional (until I turned 40!!) but this will likely sound like a love letter about friendship.  Every breath I take, every tear that drops, the deepest of laughs, or the strength I exert is felt by my friends. I can tell.  I just know it.  I can't tell you how much comfort I take in friendship.  I feel some of my friends deep in my soul.  Some don't even live close to me but I feel their love and support, and I truly love them back.  I feel their pain, and their triumphs, I know when something really means something to them or is just a passing annoyance.  Friends make the simplest of gestures that mean the most; a hug, a look, a like, a post, a text, a RT, a call cleverly inserted into your calendar, a meet up, a quick phone call, or an IM to tell you they admire you and sometimes opening your wallet for something you know hurts your friend the most - their cause, their drive, the life of their child. Every gesture means something, something great because it's the one you personally picked.  I have read all of your words and they'll never, ever be deleted from my mind. I have heard your stories, sometimes of normalcy or not, sometimes hysterical, and sometimes not but your every word means a lot. You might not think I am talking about you but I am.

This is one of my wishes for Alex, the gift of friendship.

So there will be an event in the coming year, called "Friend Fest"because there needs to be some action here.  We'll have a big play date somewhere fun for all of us to be!  You'll bring a friend, and he'll bring a friend, and they'll bring a friend. There will be shirts that say "I'm Alex's Friend". Then I'll never have to say "No" to that question again.

Until then we made this coloring page! Color for Alex, show him he has friends!  https://dl.dropboxusercontent.com/u/23993460/Al_Pal_Coloring_Page.pdf 

Color the page, post in it your window at home, on your refrigerator, post your pic on my Facebook page,https://www.facebook.com/amy.cherrstrom, tweet me a pic at  @AmyCherrstrom with #Alexismypal #Art4Al or pin it on Pinterest: http://www.pinterest.com/cherrstrom/

https://dl.dropboxusercontent.com/u/23993460/Al_Pal_Coloring_Page.pdf

The Cherrstrom Family

Jack

Everyone has been asking how Jack is doing?  How does he cope with his brothers' illness?  Is he more mature?  Jack is often referred to as our unaffected son as he doesn't have Hunter Syndrome but he lives with it every day.  How can anyone really be unaffected?

A few months ago we met with Ohio's Senators and Representatives about Rare Disease, each meeting everyone kept inquiring about Jack, which was very kind and compassionate.

So lets find out how he's doing, here's a recent interview with him. We had to ease into some of the serious questions, and you'll see he's a man of few words!


Amy: If you could feed your brothers anything for dinner, what would you pick?

Jack: Gum

Jack and Nick

Alex & Jack, throw back to 2010

Amy: Do you have a favorite brother?

Jack: No. Both.

Amy: Do you want a sister?

Jack: No.

Amy: Are you going to be a Dad when you grow up?  How many kids will you have?

Jack: Yes, I am going to have 4 kids.

Amy: Wow, 4.  That's a lot.  Are you sure?  4.  That's how many I grew up with...

Jack: Yes 4.

Amy: What's your favorite sport?

Jack: Baseball

Amy: Do you want to be President?

Jack: Yes.

Amy: What platform would you run on?  What would you change, how would you get elected?

Jack: School would be 5 hours a day, 4 days a week

Amy: What do you want to be when you grow up?

Jack: A paleontologist.

Amy: I wanted to be an Oceanographer so I totally get that

Amy: What's the best way to make money?

Jack: Sell used golf balls.  Everyone wants the Pro V1s.  Those sell fast.

Amy: What's your favorite animal?

Jack: Buffalo

Buffalo by Jack

Amy: What's the best animal on the planet?

Duck Billed Platypus drawn by Jack

Jack: A duck billed platypus

Amy: What's your favorite seafood?

Jack: Crab

Nick chimes in Chicken Nuggets.

Amy: What's the best thing about living in Ohio?

Jack: Good schools

Amy: Is that what you really think?

Jack: Best roller coasters (Cedar Point)

Amy: If you could go anywhere in the world, where would you go?

Jack: England

Amy: If you could go anywhere in the United States, where would you go?

Jack: California

Amy: What would be your dream vacation?

Jack: Cedar Point for a week

Amy: If you ran a crabbing boat like on the show "Deadliest Catch", how many crab would you catch?

Jack: 3,313
Nick: 4

Amy: What's your favorite TV show and why?

Jack: Modern Family, it's so funny

Amy: Here's a multiple choice question:

Would you:

A.) Climb Mt. Everest
B.) Play with your x-Box all day
C.) Ride a wild buffalo

Jack: Climb Mt. Everest

Amy: How many days do you think you and "Man vs. Wild" could live in the woods?

Jack: 1,000,000 days

Now to your brothers

Amy: If you could do a fundraiser to raise money for MPS, what would you do?

Jack: Long Drive contest

Amy: What are you raising money for?

Jack: To pay for medical bills.

Amy: Well, sort of in a way...preventing more medical bills. We pay those ourselves.  We're raising money for research to cure MPS II, Hunter Syndrome.

Amy: Do you worry when Nick and Alex are getting their weekly infusions?

Jack at Lurie Children's Hospital in Chicago

Jack: No, but they have to get stuck with a needle every week.

Amy: Do you think it is hard when we go to Chicago and see all of their Doctors?

Jack: We have fun but I am sure they are sad.

Keeping It Real for Alex before the Clinical Trial in Chicago

Amy: Do you remember when Nick and Alex had surgeries?

Jack: Yes, I remember.  I felt bad for him.  Alex had a big cast on his neck.  

We cannot take credit for how wonderful Jack is, it's him!  He's such a great kid with a kind heart, and a calm, easy going demeanor.  He takes everything in stride and has such a positive attitude about pretty much everything in life including his brothers' illness.


We love you Jack!

The Cherrstrom Family

The Long Drive II Survive Results are in!  It was a tough competition!  Thank you to everyone for your generous donations and support! Congratulations to the winners!  The boys will be presenting your prizes in the coming weeks!  xoxo The Cherrstroms

*Team Alex winner was 93 yards.

Pictures from the Long Drive event:

This is used to measure the distance!

Fore!!! Long Drive II Survive Competition

We just tee'd off our first fundraiser after Alex was diagnosed with MPS II, Hunter Syndrome, in October of 2009, and Nick shortly thereafter in 2010! The boys are excited to compete in a Long Drive competition!  For each donation, one of the boys will drive a ball, and the donor with the ball that's driven the farthest by each boy will win a special prize!

Donations will go to the National MPS Society to benefit MPS II research, here's our fundraising site.

https://www.crowdrise.com/longdriveiisurvive/fundraiser/amycherrstrom


We're 102% of Goal!  We're overwhelmed by your support!  Thank you!

Some inspiration, these boys are ready to go:

Brothers and friends

Jack - a throw back to Halloween!  Born to be a golfer!

Nick has his all business face on

Don't count the little guy out! 

The Big Dog 

Perfecting his grip

The Warm Up

Golf is in their blood

Brothers Forever

You took the Words Right Out of my Mouth

In early June, I participated in a meeting by webcast hosted by the Food & Drug Administration (FDA) to learn more about the neurological manifestations of inborn errors of metabolism. What all that means is advocates and patients gathered to discuss what it's like to be a patient with or the caregiver for someone with an inborn error of metabolism, and what the impact of those diseases is and also provide a chance to make our points regarding what the FDA should consider in reference to clinical trials involving patients with these diseases. MPS II (Hunter Syndrome) and the family of MPS diseases fall squarely into this disease category but also PKU, Batten disease and many other disease patients and caregivers/parents were present and well represented. This meeting might have had a huge impact on the FDA as they learned about our diseases but it had a huge impact on me as a parent.

I didn't need to say anything the parents and patients in attendance took the words right out of my mouth...but we'll get to that in a second. Let me respectfully share with you some of the comments that resonated with me, and that I now think about frequently...these comments are burned into my mind but left an indelible mark on my heart.

From one of the parents about Batten Disease (paraphrased), My kids loved baseball. My kids ran around and played baseball. Now my child needs a machine that runs 24x7 to ensure he does not drown in his own saliva.

My take away - My kids love baseball too. They can walk, they can run, and I cherish that now but that could change too soon, and it's precious. It also made me realize that today is today and tomorrow is not guaranteed. I need to do everything I can to preserve what I can and help them how I can, and hold on tight to what we have now (minding that one of my sons is not doing as well as the other).

I have two children with MPS, and I heard a parent describe that in their particular disease one child was starting to decline more rapidly than another, and the other child asked if that was going to happen to her, and was in fear of what awaited her, and eventually she did end up in the same state as her sibling. 

My take away - This was heart wrenching to hear. My kids are young. I wonder how much they know about the effects the disease has on each other. I see them look at each other when their weekly infusion is delivered, when their brother gets a needle put in his chest. How much do they notice about each other? I know my 8 year old wishes his 5 year old brother would talk and would be OK but how much are they beginning to fear by seeing the disease in one another? 

I learned so much from these parents about what kids do who are frustrated because they cannot communicate. Children crying because they can't communicate their basic needs, and that is unbelievably frustrating. Parents also offered examples where someone might perceive a child is acting out by throwing a cup at them but really the child just can't communicate that it's empty and doesn't know how to communicate that or can't, or can't put the cup down.

My take away - My son gets what he needs done by pointing, pulling or guiding your hand, and also sometimes using his words. He gets very, very frustrated trying to understand no. I felt understood by these other parents, and found new perspective on what I might be seeing in my own son.

I learned about PKU. While these patients will live, they have to live with very restrictive diets where one patient talked about having to eat processed cheese. It was very interesting but also a notable struggle.

On the subject of the FDA and Clinical Trials comments most moving to me are:  


Parents said why are we trying to prove efficacy of these drugs on kids who are different every day, every hour. It's hard to prove efficacy in this space. Let's focus on safety and get these drugs/medicines out to these kids, most of these children are dying from their disease and need something before it's too late. Families mentioned trials that had come and gone because of the efficacy requirements they couldn't meet, or trials they couldn't gain access to...

I would have said this but didn't have to...

Why are children from other countries benefiting from drugs and trials that children in the U.S. can't have? Why are other governments making decisions based on the same data set and allowing their patients to participate in trials? Let our kids have access too.

I would have said that but didn't have to...

This was a great, well run meeting, and I am hopeful that this helps the FDA along with our children and families. The parents were just simply amazing, had all the "right" things to say and I was in awe of all that the human spirit can endure, and devastating effects that I can now so visibly see through their eyes. The pain, the suffering, the drive to do something, anything, those who had lost children but didn't want someone else to lose theirs. It was one of the most moving experiences of my life. Then as that meeting concluded we went back to our own battle with Hunter Syndrome.

Fast forwarding to the end of June, we traveled to Chicago to be considered for a clinical trial for one of our sons, trying to meet some stringent eligibility requirements as this trial is in the efficacy phase. The does it work phase. All over the hotel, I saw these really fun loving people wearing these Superhero shirts. Every elevator ride I took, one of these Superheros was in the elevator! All of them really fun folks! One group of guys asked me why I didn't have a beer in my hand, and my response was "even though you're on vacation, you're never on vacation from being a

This guy made the laundry.

Mom but I hope a beer is in my future but first it's laundry." I headed to the laundry room to do my Mom job before any beer is in my short term future. These folks were so happy and celebrating and they were everywhere in the hotel!
Next elevator ride, I asked the guy in the elevator "why are you wearing a Super Man shirt?" He said "my grandson has pediatric cancer, and this is for him, Sammy's Superheroes. We raise money for pediatric cancer. There was nothing to treat his rare cancer and we raised money for the hospital (Lurie Children's)." I told him I was there for a clinical trial for my kids...he wished me heartfelt luck, he knew our battle and said there isn't anything out there to treat kids, everything is experimental. I exited the elevator, doors closed, and I thought wow, what an amazing thing to hear...and I went off again encouraged to wage our battle, and encouraged that so many had rallied around Sammy, and that yet again someone understood in a way what we're facing. Later, I thought my car was being brought around at the hotel by the valet and it turned out to be one of the Sammy's Superhero's. Same. Exact. Car. So I have a Superhero ride, I need to save the day for my kids!

Here's their site, check them out: http://sammyssuperheroes.org/

So I leave you with all this bravery I've witnessed in June. This intense love, intense frustration, a deep sense for the human spirit, some defeated in their battle, some victorious but still scarred, some trying to save others, and these silent battles that aren't becoming so silent any more. These threads that bind all these groups together and make us able to "take the words right out of each others mouths". 

The Cherrstroms

Photos taken by Jack during our Chicago Clinical Trial visit

Hancock Building

Playboy Mansion

Water Tower Place with the Lego Store!  Sorry about all the Lego guy/gal heads Nick spilled on the floor!

Our IEP Experience

Fresh off our first annual review of Alex's progress on his Individualized Education Plan (IEP), setting some goals and the plans for summer, and his next year of school, we'd like to share our experience with the IEP process. I've read a lot of articles and publications about IEP meetings and services, as I have zero, zip, nada experience with IEPs and Special Education Services.  Some of the articles seemed to indicate you'd have to fight for what your child needs, call meetings to air issues about services not provided, etc.  The articles and tips were really concerning going into our 1st year with an IEP making me think it was going to be a really combative experience. Our experience was polar opposite to those articles...I found our IEP process to be FUN!  Yes, I said fun.

Here's our experience and our learnings from this process after our first year.

1. Be Yourself.  I found that if I was comfortable, respectful and in control of myself, it made everyone else feel comfortable too and the conversation went well!  I love humor, and was able to weave that into the discussion making everyone comfortable seeing that I was approachable and human just like everyone else in the room. Going in with a positive attitude expecting the best was the best choice for us, and it delivered in so many ways just having the right attitude.
2. Bumps in the Road will happen.  These are children not robots who act according to plan, that's why the plan has to be flexible and adapted.  Alex did some things that weren't exactly to "plan".  Hunter Syndrome carries with it some aggressive behaviors.  Sometimes these behaviors happen in peaks and valleys and when you can't communicate well that just compounds the issue.  We talked things out, always.  We supported the school and the teachers but also communicated what we thought was best for Alex.   In the end, we're happy with the plans we had and the plans we had to adjust on the fly.
3. It is emotional.  I found myself getting a little choked up on the way to the IEP meeting.  There's a lot of discussion about if your child is making their goals, if not what's the next step, and what you want for their future. We didn't want him to have to deal with such an awful disease, and have to fight for his life; every medical or development discussion brings this right front and center again.  It's painful but we try to focus on the fact that this discussion is to help him gain, help him live, give him a chance to get into a clinical trial and save his life.  It's not a plan or about the short term, it's a mission.  It's a mission to save Alex.  
4. It's not your only chance.  Yes the IEP process is formal and there's a lot of documentation.  We found our team though to be  flexible, willing to work with us, willing to adjust whenever we needed an adjustment within reason.  So each review, each change to the plan isn't your last chance, it's one chance of many to adjust and form, and adjust and form the plan to what your child needs as he progresses along or faces setbacks.  
5. Gain Advocates, make everyone want to be on your team and inspired by your motivation. We built a strong relationship and now have 8+ advocates for our child.  The teachers, therapists and staff help us when we need a different perspective on our child or need them to write a letter outlining their view of our child.  This team is always there when we need them.  They've helped us find the right techniques to ensure Alex can participate in the clinical trial, and they've been a sounding board when we're struggling.  They know our mission is to save him, and they're on board, doing all they can.  Feeding back to us what we need to know every point along the way.  This by far is the biggest benefit to us as parents, we feel so supported by this wealth of experience and resources.  I am never afraid to say to them, is this weird or what do your think about this or what do you see in the classroom? I too think it reminds them why they are so motivated to be teachers, therapists and aids.  
6. Future Goals don't have to be profound.  When you are looking back at a year, and trying to forge what the future is going to look like I found myself focusing on goals that say, "I want to live, I need a better treatment or cure, and then I want him to be what he wants to be...an astronaut, a fireman, whatever that is...instead of those hard, lofty goals we settled on the basics continue to build, and build and build on his progress, continue the good work and the focus on him and his achievements.  He's smart and we know he can do it, we know he can improve and settling with "non-profound" as I put it but very sound basic goals really helped us.  

We hope sharing our vantage point on the IEP process helps you in some way find your own comfort with it. We can't thank our school and all of the staff there enough.  They are an amazingly experienced team, and they help us feel so very supported in a battle that is so hard every day.  It really does take a village.

The Cherrstroms

A Life Lesson from Great Wolf Lodge

Alex wiped out from water park fun

At first this might seem like a little bit of a superficial story but I can assure you this has great meaning in our lives. We kept asking other parents which water park we should take the kids to this year.  Our kids love the water and swimming and we've never been to a water park before.  We received all sorts of input, and saw everyone's awesome pics on Facebook, and finally took the kids to Great Wolf Lodge.  We knew it would be a challenge with 3 kids, ages 8, 5, and 3, and that they would certainly run off to 3 different places once in the water park.  We talked my sister, my brother in law, my nieces and nephew into going.  We literally couldn't have gone there without them!  Thank you so much to them!!  They made the trip fun, and really possible.  I should mention too that I was so impressed with the life guards there, what a well run and serious operation.

Dan was with Alex most of the time, and I was with Nick while Jack was running from ride to ride.  As parents we always align ourselves to the child whose weight and strength we can handle, as these guys grow my abilities become more and more limited!  We started to relax and really enjoy these precious childhood moments.   There are tons of parents and grandparents there and it's a great anthropological exercise on how people parent.  That's when I saw this beautiful Mom walking casually through the water park with her daughter.  There were a lot of Dads stealing a glimpse of this lady. She was one of those Moms who was unbelievably gorgeous, dark hair, tan, the whole package.  This Mom was so beautiful she was wearing a Target bikini and making it look like it was custom made for her.  If you've been inside Target this season, it's the turquoise polka dot bikini front and center in their bathing suit section.  At first she appeared just to be a regular Mom, but then we saw her at the snack bar.  Jack and Nick hadn't made their choices yet so I told beautiful Mom that she could go ahead of us.  She approached the snack bar, and I noticed that her daughter started to fling her head all over in excitement, and was having trouble controlling her body. Her daughter was a special needs child afflicted with some terrible condition.  As I watched them ahead of us at the snack bar, I saw her Mom pick out ice cream which made her daughter shake even more and rock.  The Mom ordered a light beer for herself. Then picked up her goods, and slowly and casually extended her left arm back as if she was just escorting her daughter off to a dance.  Her daughter placed her arm in hers, the Mom picked up her beer, and then went along laughing and smiling off to enjoy both of their treats.  Their walk was slow, and beer was spilled but the Mom looked confident, joyful, and appeared to not care that everyone was looking at her.  Was this Mom thinking well just go ahead and enjoy the view?  A simple scene of course but this really hit home with me, I am always proud of my kids but relaxed, casual and in control is something that's just evolving in our world of living with Hunter Syndrome...and really, 3 boys.  What I took away from this Mom was that I can take very good care of myself, I can be casual with my kids in public, I don't have to sprint after them or apologize all the time if something isn't perfect or possibly what people expect.

By looking for just a few moments through this woman's window into her world, I learned a whole bunch about mine.  I can have a light beer, and relax and enjoy life!  When things get hard, it's so easy to stay in your home, and frankly hide from the world.  Difficult diseases demand a lot including time and attention, things happen, and many times things don't go to plan or you're surprised by surgeries or hospital visits, yep in the moment these need your attention but in times when life might be at a steady pace it's not a bad idea to take care of yourself.  I've been running a lot to take care of myself, and leave some stress on the treadmill or pavement, and it feels great! My time doesn't come easy but I have learned I have to take it or I'll never, ever get it!  Somehow I am not selfish enough, and there's always something I place as a priority over me. Just even writing me, me, me feels selfish.  I am so proud of these Moms and especially proud of Moms and Dads with special needs or medically challenged children.  I often hear one my friends call his wife a MILF, and that makes me happy because they remember who they are and it shows their strength and love for one another.  Whether you're a MILF on the inside, a MILF on the outside, or lucky enough to be both, I am so proud to see you all go out there and get life!

As Dr. Dre puts it, "By no means average She's on when she's got to have it Baby you're a perfect 10, I wanna get in Can I get down so I can win" 

Dan, my husband, still says to this day that he has no idea who I am talking about which is funny because I think just about everyone in the entire water park saw this gal.  We'll let him think I believe that (he proofs this blog with his input too).  For that single day of joy and enlightenment, I want to thank the turquoise polka dot bikini lady for making me see what's possible!  Thank you, you've just made my family's life and mine a whole lot clearer and better!  We've been taking the kids to more events, keep challenging and pushing ourselves to get out and about and enjoy the world!  We revel in every event we're able to complete with 3 to even 7 boys in tow!  Like the recent monster truck event we went to, who knows maybe we're even working up to boarding a plane and finally taking a much needed vacation this year!  We're not going to put any limits on the possibilities.  Sometimes it takes seeing someone else in action to know what you're capable of as well.

Nicholas & his cousin

The Cherrstroms

Why We Live in Cleveland - Part II

The Real Story - Part II

When we arrived in Cleveland, we didn't have a home to move into yet.  My grandma graciously vacated her condo so we'd have temporary housing until we found a house.  Her place is great and she loves it very much.  All of her neighbors are about 80 years old and up, so it's a perfect place to move a family of five.  I am not making any of this up. One day we were outside with my grandma and a hearse drove by and Jack asked what's that car.  An elderly lady had passed away just a few condos away from us and the hearse was picking her up.  My grandma told Jack someone died and told us that was a regular occurrence around there with old people. The kids had a blast in her condo though.  They loved it.  Alex found a bird feeder with a silver pole positioned directly outside a retired man's window to slide down like a fire pole.  He's quite girthy so the feeder would sway giving to his weight.  The man came out and wrapped caution tape all around it like there had been an accident, and only grunted or shuffled away when we tried to talk to him. Everyone was pretty friendly but it was clear we didn't fit with this crowd, and we weren't making many friends.

There was also a lot of fishing done by the boys in the nearby pond.

Growing up during the depression makes my grandma a very thrifty lady, nothing goes to waste including her garage.  For my home office, she set up a bunch of old furniture in her garage where I could shut the doors and have complete privacy.  That's right when in town, I was working out of a garage.  Big things start out of garages and I embraced my garage office except when the lawn service would come through mid-conference call and I'd have to run into the laundry room to hide from the noise of the leaf blower.  Otherwise it was a great office!

Nick at Great Lakes Science Center

On the weekends we didn't know what to do with ourselves so we gravitated toward the city.  We'd go to
Tremont and play in the play lots outside Cleveland City Schools, and that lovely Lincoln Park.  We went to the Aquarium, the Great Lakes Science Center, and the Natural History Museum.  We've been to the Q quite often, and the friendliness of their staff is wonderful, and it makes for such a nice experience!  We're only a short drive away from Cedar Point, and frankly going there with Jack is the most fun I've ever had, ever!  Kiddie Park is adorable. Ah, and Lake Erie is close by and it's quite beautiful!

Jack at Huntington Beach

Alex at Kiddie Park

The West Side Market is amazing!  It's an awesome gem.  The food scene is well developed, and delicious, everything from comfort food, to ethnic foods made by people who really care about good food.  Falafal is a regular part of our diet now.  We don't get out as much as we'd like but when we do there's just about everything you'd ever want.  Momocho, Chez Francois, Lola, Fahrenheit,  and Strip (keep it clean it's a restaurant) are palate pleasers.  Touch Super Club, Hodge's, Flying Fig and some others are on our list once we're able to make it out again.  We also haven't been to the amazing Theater District, and the Art Museum.

We really found that Cleveland is an amazing city that has so much to offer, and rather than dwell on what can be improved we should be proud of what's here.  It is really, really nice!!

Clevelanders are some of the nicest people, but interestingly we organize ourselves by Westsiders and Eastsiders.  For a fleeting moment we considered looking for a house on the East side, but having grown up on the West Side it's completely foreign territory.  If we did that, we might as well move to Europe because we know nothing about navigating the East side.  When it snows here, the East Side also receives at least +1000 inches of snow compared to the West Side. Even Dr. Dre points out in his song California Love, "Let's show these fools how we do this on the west side Cause you and I know it's tha best side".  How can you argue with Dr. Dre?   So we're West Side residents.

With all the high points, there have been some low points.  When we first moved here, Nicholas had an extreme onset of severe asthma.  He took many trips by ambulance down to Rainbow Babies due to breathing issues.  It was a really bad and scary time, and we couldn't figure out why this was happening when he had been fine in Chicago with the exception of when he was born and stayed in the NICU for breathing for 17 days.  In our new house, we found that he was severely allergic and asthmatic due to a specific kind of dog.This meant we had to rip out every shred of carpet, and spent thousands putting hardwood floors in.  We also put in a black light system and humidifier in our HVAC system just to ensure his breathing stays on the up and up.  We can't really go to other people's houses if they have pets.  One exposure, and Nicholas spends weeks recovering.  So we really stay in our little bubble as much as we can.  Slowly we're overcoming this obstacle as well.

The best part about Cleveland has been reconnecting with all of our friends and spending great, quality time with our family!  This is a great city that has so much to offer and we can't wait to keep exploring all its great treasures!

The Cherrstroms

Nick at the Children's Museum

Nick at the fishing pond

Alex at the fishing pond.