Ethan's First Cover!

This Sunday we are walking in the March of Dimes Walk here in Richmond. We are walking with Richmondmom.com in Honor of Ethan and can I just say how proud I am. Oh my, my cup runneth over....

Today, Ethan and another sweet boy were featured on the cover of our local Newspaper... he is a star!


Moms ready to walk for kids



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Published: April 28, 2010
By Melody Kinser
mkinser@mechlocal.com

Sunday’s March for Babies 2010 in Richmond is going to be a very personal experience for two Mechanicsville mothers.

As Cathy Motley-Fitch and Laura Meyer Hamilton prepare for the fundraiser formerly known as WalkAmerica, they shared their stories last week about how they became involved in an organization committed to the needs of moms and babies.

Cathy gave birth on May 29, 2009, to twins, son Grayson Howard and daughter Lola Jayden, who were due on July 29. Arriving eight weeks early, their birthweights were three pounds, seven ounces and three pounds, four ounces, respectively. Grayson was born at 1:51 p.m. and Lola followed at 1:52 p.m. They were delivered by Cesarean section.

In talking about their arrival, Cathy said there were no signs of any problems. “Both of them were perfectly healthy.” Grayson and Lola were Cathy and Alan Fitch’s first venture in parenthood.

A week later, the celebration came to an abrupt halt when Lola succumbed to necrotizing enterocolitis, which Google Health said “is the death of intestinal tissue. It primarily affects premature infants or sick newborns.”

Cathy said the illness that claimed her daughter “was highly preventable.” “We had no idea,” she said. “She was born on Friday and died on Thursday. The day she was diagnosed with NEC she died.”

For five weeks before she delivered the twins, Cathy had been placed on bed rest at VCU Medical Center. When Grayson and Lola were born, they were immediately placed in the Neonatal Intensive Care Unit (NICU).

After Lola’s death, Cathy and Alan remained in the NICU with Grayson for six more weeks. It was during that time period that she became aware of the role of the March of Dimes.

In trying to cope with the loss of Lola, Cathy discovered MISS, Mothers In Sympathy and Support. Alan, she said, is starting to work with “Daddy Bootcamp” workshops. “This experience has shown him how important it is to appreciate what you have.”

Team Lola Gray will be walking on Sunday at Monroe Park in Richmond. Cathy said family and friends will be taking part and she will sing at the kickoff at the Children’s Festival.

Cathy has teamed up with the March of Dimes with a lullaby CD, “Broadway My Baby,” that is being released today. Thirty percent of profits will go to the March of Dimes. More information on her CD can be found at http://www.cathymotley.com.

Grayson, described by Cathy as “a mile a minute happy,” “has gotten us through this.”

When she lost Lola, she found Share Your Story through the March of Dimes. “I turned to it to find other people who had gone through the same thing. You post your story, which I have not done yet. For me, you know my CD has been, I mean, that was my labor of love. I couldn’t say the words, but I could sing — that’s how we came to the March of Dimes.:
At Christmas, Cathy said “We made special handmade ornaments for Lola and everyone who donated to the March of Dimes got a lavender glitter. We raised $750. Then we decided recently to do the walk and we’re still raising money for our team now.”

By working with the March of Dimes, she added, she can help in the fight against prematurity. “We have to make something right out of her death. We had a minister say at her funeral not to ask why, but to ask what – what you can do, so that has been our mantra.”

Cathy said some walkers have received pledges of $1 per mile for the five-mile walk. “Others are doing a lump sum contribution.”

As she continues to deal with the loss of her daughter, she attends grief counseling sessions. “Other people going through it, it makes you feel – no one can understand it except for someone who’s gone through it because no one should lose a child.”

She is determined to become an advocate for the March of Dimes and said the CD is a first step. “I’d love to lobby for them and just do whatever I can to help preemie awareness and prevention.”

After Lola’s funeral, Cathy said they planted a fuchsia crepe myrtle tree in her honor and tied pink ribbons around it.

Laura’s involvement with the March of Dimes stems from her 16-month-old son Ethan, who has mitochondrial disease. Richmondmom.com has formed a team in Sunday’s walk for Ethan, who was six weeks premature and spent five weeks in the NICU at Henrico Doctors’ Hospital.

Only recently did Laura and her husband Chris learn of their son’s diagnosis. Born on Dec. 5, 2008, with multiple birth defects, he has undergone five surgeries and had multiple hospital stays. While Ethan was in the NICU, the Hamiltons got to know Lisa Roday, a NICU family support specialist with he March of Dimes. She has an office on-site.

“They actually reach out to the NICU parents. They come to each one of the parents and they will just sit with you if you want to talk. Having a child in NICU is a super rollercoaster — one minute everything is great and two hours later my son went into SVT (supraventricular tachycardia), which is a heart problem, and we weren’t sure that Ethan was going to make it that night, so the March of Dimes volunteers have actually been through what a NICU parent is going through. So they’re able to really relate to you and I don’t know how I would have gotten through it.”

“Going into my pregnancy we knew when I was 16 weeks pregnant that there was a problem. My blood work came back that there was a one in 51 chance of Down syndrome, which that number is a relatively pretty risky number,” Laura said. “They were pretty concerned” and called her to come in the next day for an ultrasound.

She met with a physician referred to as “a high-risk doctor” and was told her son “had three markers for Down syndrome. One of the markers were where his kidneys were.” She said they were “very enlarged and so they told us our baby was very sick and that we really needed to have an amniocentesis.” After undergoing that procedure, she was told it “did not come back positive for Down’s, but we started seeing multiple specialists for kidneys.”

Laura said “no one could really tell us a diagnosis until he was born. The whole time while I was pregnant we were so concerned about the kidneys. At 33 weeks, I was put in the hospital and given surfactante, which is a steroid that helps the baby’s lungs develop for premature babies. And then he was born six weeks premature because his kidneys had become so enlarged they were pressing on his lungs, so they had to take him right away.”

With three children at home — ages 9, 7 and 3 — Laura was well prepared when labor was induced. “I’m really good at this,” she said about Ethan’s delivery after four hours of labor. “When he was born we were concerned about this birth defect with his kidneys. My husband and I looked at each other and I said ‘Something else is wrong with this baby; he doesn’t look like our other babies.’ I just knew there was something else wrong. That night a genetic doctor from MCV (VCU Medical Center formerly was the Medical College of Virginia) came to visit with us and the testing began.”

“They did so many different types of tests,” she recalled. “He had so many little idiosyncrasies; it’s just been within the last couple of months that the mitochondrial disease has been diagnosed.” She said a trip to Atlanta is planned this summer for a muscle biopsy.

“Mitochondrial disease is extremely rare,” Laura said. “I have only met two other mothers here in Hanover — one little girl passed away at 5 years old and then there’s a little boy he’s 4 here in Hanover — that’s all that I’ve met.”

These days, Laura said, “It’s kind of my goal now to educate people in mitochondrial disease and that’s what we’re looking toward in September.” At that time a Family Fun Day fundraiser will be held. More information can be found at http://lovemy4littlehams.blogspot.com/2010/04/energy-4-ethan-car-magnets.html.

“Right now,” Laura said, Ethan has in-home care. “He takes multiple medications. He doesn’t crawl or stand up yet, or talk.” She said they are working with Hanover County Early Intervention.”

She also said her son “doesn’t have energy like most kids; he has very low muscle tone and it takes him a lot longer to do things than those children. Vicki Williamson is our PT (physical therapist) and she’s fabulous. She has really helped him he has progressed [in development] so much. She has been able to work with us at our home. He gets services six times a month from them.”

Laura said she contacted Richmondmom.com, also known as Kate Hall, after seeing an article in a magazine about her participation in the March of Dimes walk. That call, she said, was to the point: “Hey, I have a son and here’s the situation.” Last year, the team walked “in honor of a little boy who had died from Hanover. This year she offered for the team to be in honor of Ethan. His name will be on the back of the t-shirts. We’re close to $3,000 now as far as what we’ve raised.”

“God’s given us Ethan for a reason,” Laura said. “Our children are only given to us for a moment in time and it’s our responsibility to raise them the best way we can. And when it’s time God will take them back.”

For more information on Ethan’s team, visit Richmondmom.com.

Additional information can be found at http://www.marchforbabies.org/lovemy4ltlhamsAccording to the March of Dimes Virginia Chapter website,
http://www.marchofdimes.com/virginia/, “The money raised through the March for Babies will support lifesaving research, community services, education and advocacy that help babies get a healthy start.”

Get over it!

So yesterday we took Ethan to his 1st Eye Appointment to rule out any deterioration from Mito and I'm happy to report that the back of his eyes look great. The Doctor did warn us that this can change very quickly with Mito kids due to the metabolism issues but for now we will celebrate that good news. One day at time, right?

Then he told us that Ethan is far sighted and will need glasses. My heart fell to my stomach because nothing screams "special needs" kid like a baby with glasses strapped around his head. So for a little while I had a little pity party for myself but thankfully God jumped in and told me to "Get over It'.

How did he do this, you ask? Well, because our Mito friend Cooper has been really sick and has now been accepted for a transplant and I'm worried about some stupid glasses....Get over it!!! So we have the prescription for the glasses but he wants us to wait a couple of weeks to see if Ethan continues to cross his eyes and if so we will get it filled. If not, the doctor wants to wait until October (6 months) and hopefully his face will have grown a little bit and the glasses will fit better....So in the end, the glasses are really no BIG deal but will you pray for Cooper and his family? He is heading to Pittsburgh for his transplant...

And truth be told I do love me some accessories! So how about these cute glasses for Ethan? What do you think?

I was wrong and I was glad, thank you very much!

This morning while the big kids were in Sunday school I took Ethan down to the nursery to keep him and Anna Claire entertained.  They had a toddler/trike/bike and Anna Claire went right for it and here is how the conversation went:

Me - "Anna Claire, I think you are too big for that"

Anna Claire - "Ok, Ethan can ride it"

Me - "Oh no, he can't do that"

Anna Claire - "Why?"

Me - (thinking REALLY hard how to answer) "because he might fall"

Anna Claire - "So, you can just put him back on if he falls"

Me - "Hmmm...maybe you are right"

So we put him on and he LOVED it, he scooted his feet back and forth and amazed me.  I underestimated him, shame on me!  So this afternoon, we took some of his "baby" toys to my favorite consignment shop Kid to Kid and got a $15 store credit and bought him his very own riding toy and might I add that it only cost $6 so we actually made a couple of bucks.  Woot Woot! 

Feels good to be wrong.....

Milkin Cows and Such.....

This morning we packed up the little Hams and headed to the Children's Museum in downtown Richmond.  Today was the 8th annual Connections Fair, a resource fair for children & youth with special needs and the 1st 500 people got into the museum FREE.  Ya'll know I love me some FREE family time!  We had a great time.  They had all kinds of great information tables set up and my husband got him some SWAG....you know junk with companies names on it...he LOVES that stuff!  We did meet a couple of the sweetest therapeutic dogs and I wish I could say I got a picture of this awesome lab kissing Ethan on the face but I was a little busy dealing with Anna Claire who was screaming at the top of her lungs to not let the dog near her.  I won't even tell ya what she did when Ronald McDonald came walking up....you can use your imigination on that one!  Good times.....

This is the Cow....

That Anna Claire milked (but don't worry no real animals were hurt in this stunt)

Ethan LOVED this mirror...can you just imagine two of this sweet boy?

We hung out with dinosaurs

Jake fixed a car

Ethan met a friend

The girls hung out in a cave

and this little boy stole my heart once again....

How was your Saturday?

Energy 4 Ethan

Our commitee for the 1st Annual Energy 4 Ethan Gala was on Sat. evening.  We have a great group of people of helping to plan our 1st event and we are so excited.  The date has been set - September 25th.

Here is a flyer I created to help get the word out about Ethan.

I was also interviewed by a local newspaper and the story will be in next week's publication.  We have some exciting stuff going on around here....

Faces of Mito

Checkout this beautiful video that Jen put together, Mother of a sweet baby girl is with Jesus after suffering from Mito.... Ethan is towards the end of the video :)

http://www.onetruemedia.com/shared?p=abcd7ad4ed02f7e4e33826&skin_id=701

Energy 4 Ethan Car Magnets

I just ordered Ethan's "Energy 4 Ethan" Car Magnets and am soooo excited!  Our committee is meeting Sat. night to start planning our big event in September to raise funds for the UMDF to help find a cure and we will also be raising funds to help pay for Ethan's treatment.  Would you like to help spread the word about Ethan and raise awareness for Mito?  Order your car magnet today!


https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=BKCB7WG7WYKWS

Occupational Therapy

Today Ethan had OT and oh my was he a sight to see.  They put these blow up arm bands on him to keep him from bending his arms so he would be forced to stay on hands/knees.  Not a happy boy that made...

I love how he is looking at Mrs. Vickie, I think he is probably thinking "What the heck" Ha!!

Did you see the new logo my friend created for Energy 4 Ethan?  So excited.  Erin is the best.  She is a graphic designer.  Check her company out for all of your design needs http://www.alacartedesigns.net/.  Oh and she does awesome Christmas and Business Cards!!  So much talent....

Frustration

The title of my post seems to describe me these days....frustrated!  Ethan had his checkup on Thursday and has not gained any weight since November and has only grown 1/2 inch.  On Friday we went to the Pulmonolgist to review his sleep test.  The results were "not normal but safe".  We will retest in 3 months.  The doctor is also concerned about his reflux and the fact that he has not grown.  Before running a bunch of GI tests which are painful and expensive to determine if a Nissan is needed he prescribed a medicine for Ethan.  One which I learned that my insurance company will not cover unless we have all the testing done first.  Another $305 a month script....frustrated! Oh, and my insurance company won't pay for a fresh muscle biopsy....frustrating!  The test itself is over $10,000 plus the cost of our expenses to go to Atlanta so since our savings is almost depleted (which was our new house fund) we have decided to borrow against our 401(k).  I'm frustrated that I can't fix this for my son, I'm frustrated that my insurance company won't cover more, I'm frustrated that we make too much money (HA!) to get any aid for Ethan and I'm frustrated that I don't have money falling from trees to help find a cure for this awful horrible disease that will eventually take my son from me.  OK - all done being frustrated because really at the end of the day all that matters is doing everything I can to help this little boy.....

Easter 2010

Here is how our Easter went....

Easter Egg Coloring.....

Rice Krispy Bunny Making.....

Easter Baskets Filled with Lots of Candy....

Peep Eating....

Easter Outfits....

Bunny Shoe Wearing....

Church Going....

1st Easter Egg Hunting....

Kids Swinging....

Mama Loving Kinda Day......How was your Easter?

Easter Bunny

Ya'll know that I'm that Mom, the one who lets her kids color outside of the lines, have dirty faces and a lot of times messy rooms.  And my favorite kind of picture is one with a Bunny or a Santa Clause and a screaming kid.  Yes, I know, I'm a little strange but that is real life folks.  Kids scream and cry and pee in their pants in public.  Well, at least mine do!  So this year is no different.  I thought Ethan would be the one to have a melt down with the Easter Bunny but alas what do I know, I'm just the Mom.  Anna Claire lost her mind, she screamed so loud everyone in the mall had to look to make sure a kid was not being snatched up.  Nope, no kidnapping here, just a Mama abusing her kid by making her get her picture taken with the Easter Bunny.  Ahh.....don't worry she is not damaged, she woke up this morning and asked if we could go see the Bunny today and that she wouldn't cry because she wants candy in her basket.  Smart girl.....