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Wednesday, March 31, 2010

Hope

I remember when I was pregnant with Ethan and I would secretly "hope" that they were all wrong.  Even when I was laying in the hospital bed about to deliver him, scared, trembling, crying and holding my Mom's hand like a little girl who had fallen down I still had "hope".  I don't think that is ever going to go away.  Since we received the call and Dr. T told us she suspected Mitochondrial Disease I still had "hope".  Yesterday I got a copy of the lab results and the numbers are in bold black screaming out from the paper....

Lactate - 2.8 HIGH (range is .05-2.2)
Pyruvic Acid - 1.2 HIGH (range is .3-.7)

And yet I still "hope".  I "hope" that we overcome this, I "hope" they find a cure, I "hope" that the Lactic Acid that is circultating his sweet little body doesn't overcome his brain and he stops waving to me or kissing me.  Oh, how I "hope".  It's all a different kind of "hope" now.  Not the "hope" for a normal kid kind of "hope" but the "hope" for a kid who is comfortable, knows he is loved and knows his Mama did everything she could to give him "hope"....

But now, Lord, what do I look for? My hope is in you

Monday, March 29, 2010

Will you help me?


If you are one of my family/friends in VA can you do me a favor and help me out, all you need to do is copy the letter below (the second to the last paragraph is personalized, so you might want to change that one), click here to forward an email to Jim Webb. Paste the letter below (that you already coppied into the message and forward it on.....please do this for Ethan.


Senator Webb,

Recently, Senator Barbara Boxer (D-CA) introduced the “Brittany Wilkinson Mitochondrial Disease Research and Treatment Enhancement Act”, also known as S.2858. I am writing to you to ask that you consider cosponsoring support this very important bill. I believe this measure will enable further study of mitochondrial medicine, which presents us with truly cross-cutting research.




Mitochondria are often called the “powerhouses of the cell.” They are specialized compartments within almost every cell and are responsible for producing the energy needed by our body to sustain life. Mitochondria combine oxygen from the air we breathe with calories from food to produce the energy required for all bodily functions. If the mitochondria fail to produce sufficient energy, the cell will not function properly and organ systems will fail.



Research has revealed that mitochondrial dysfunction is at the core of many common illnesses and chronic conditions such as Alzheimer’s disease, Parkinson’s disease, diabetes, heart disease, obesity, osteoporosis, cancer and even the aging process. Medical researchers have already determined that 1 in 4000 children will develop a mitochondrial disease by age 10. They are certain that the actual number is much higher. In fact, a recent study in the UK found that 1 in 200 healthy people carry the mutation that could develop into a mitochondrial disease.



S.2858 directs the National Institutes of Health (NIH) to establish an Office of Mitochondrial Medicine. The newly created office will be directed to improve the coordination of research related to mitochondrial medicine within the institutes at the NIH and with outside researchers. It also calls on the NIH to annually award five grants for multi project research programs related to mitochondrial medicine and five grants annually for integrated, multi project research programs related to mitochondrial medicine. In addition, S.2858 calls on the NIH to establish a “Mitochondrial Medicine Centers for Excellence” to promote interdisciplinary research and training related to mitochondrial medicine. It also calls on the NIH to establish a national registry for the maintenance and sharing for research purposes and creates a biorepository for DNA and tissues collected from patients with mitochondrial disease and dysfunction for research purposes.



As you can see, a greater understanding of mitochondrial function could lead to treatments for a wide range of conditions and potentially help millions of people, but it is also very personal to me.



Senator Boxer named this legislation after Brittany Wilkinson, from Clovis, California. Brittany was an affected teenager who bravely fought against mitochondrial disease while raising awareness. She worked tirelessly as an advocate for legislation that may one day help others affected by mitochondrial disease. Brittany lost her battle against mitochondrial disease on September 6, 2009. She was 18 years old.



My 15 month old son was just diagnosed. There is not a cure is what I am told, would this be good enough if it were your child? I didn't think so.....you can read more about our story here http://lovemy4littlehams.blogspot.com/.



As your constituent, I ask that you to help those affected by mitochondrial disease. I urge you to be part of the cure and become a cosponsor of S.2858

 
 
 

Sunday, March 28, 2010

Early Intervention Easter Egg Hunt

Early Intervention hosted the annual Easter Egg Hunt at Lee Davis HS.  The above picture is Ethan and Mrs. Deb.  She has started visiting Ethan once a week for "play time"  They roll around on the floor, play with blocks, blow bubbles....wow, doesn't that sound like a fun job!  Mrs. Vicki, his OT, was not there because she and her daughter were seeing Wicked!  How lucky!!!

Ethan met a friend and I wish I had snapped a picture of Ethan and Henry.  Henry is 2 weeks older than Ethan and has Down Syndrome.  Ethan and Henry had the best time playing with plastic Easter eggs.  It was so great to see Ethan with someone his age and interacting.  We are going to have a play date soon with Henry.

We had pizza for dinner!  Always a hit in the Hamilton House!!

Time to find some Easter Eggs...

She found the perfect one!

Friday, March 26, 2010

Awareness for Mito

A fellow mito mom from North Carolina put together the following video in an effort to raise more awareness for mito. The more awareness that is brought to this disease, the more funding scientists will have for potential treatments and hopefully a cure. Thanks to Amber Greenawalt for all her work on making the video.

To help us find a cure for Ethan and the many others suffering from Mitochondrial Disease please support the United Mitochondrial Disease Foundation, www.umdf.org.


Wednesday, March 24, 2010

Jake was attacked....

By some poison something or another that lives down by the creek....

So Jake and his friends love to play outside, water gun fights, riding bikes, playing down by the creek. All favorites in our neighborhood. It's all fun until someone get's hurt....HA!  We tried good old fashion calomine and benadryl but it just wasn't cutting it so off to the doctor's office we went.  They gave him some steroids so that should do the trick!

Saturday, March 20, 2010

We are home!

Ethan came home this afternoon!  We are all thanking God today and singing his praises.  It is a beautiful day, not a cloud in the sky and the temperature is 83 degrees AND all of my little hams are home.  Really, I can't think of anything better!

Ethan is on 4 new medications including breathing treatments and steriods.  Home health will be visiting us to go over our new pulse ox machine and oxygen.  He will only need the oxygen if his stats drop while sleeping.

He came home and ate lunch and took a nice nap with Daddy while I took the other kids to the Spring Festival at their school.  We had a great time!




Anna Claire had fun going up and down the big slide


Gracie and her friend Sheridan


Making Sand Art was a big hit!


Jake climbing the wall..



The girls had butterflys painted on their face.


We came home to play with this sweet boy.  Notice that Anna Claire has peanut butter on her mouth and Ethan has it on his eyebrow.  One guess how that happened.....



Everything is getting back to normal around here.  Jake & Gracie are fighting, laundry needs to be done and Ethan is trying to get away from his Big Sister.  I wouldn't want it any other way...

Wednesday, March 17, 2010

Rollercoasters....


For those of you who have a child in the NICU or in the hospital you know all about rollercoasters. These rollercoasters are not fun.  One minute things are looking up and the next you are about to fall out of your seat!  Well, that is the day we had today!

Ethan started the morning off by ripping out his IV.  I mean, you know, full on ripping it out.  He is drinking a little bit at a time and still having wet diapers so they are going to hold off on putting another one in unless it becomes necessary.  That one took 4 tries before they got it so I'm hoping he continues to pee!  He did perk up a little and play some in the morning, which was nice to see.  He LOVED his Nurse today.  That is totally not like him.  She was great!!



My dear frined Jen, you remember her right....the one who helped keep me from losing my mind the night before Ethan was born came and brought me lunch from my favorite place, Panera.  Here is a picture of us at our last Baby Mama Night out....I am so looking forward to the next one in April.  I need it!


Just when I thought things were looking up Ethan started having some trouble keeping his stats up so back to the oxygen we went. He is also not eating very much but did try a little chocolate chip muffin...


Our Pastor stopped by to see us and said a wonderful prayer over Ethan.  It just filled my heart with joy and my eyes with tears.  It reminded me of this scripture:

“Come unto me, all ye that labour and are heavy laden, and I will give you rest. Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls. For my yoke is easy, and my burden is light” (Matthew 11:28-30)

We also had a visit from Susan, one of our friends from church who owns a Basket Company and makes the most amazing baskets...see what she brought us!


Oh and thank God for my parents, who have been picking up the other kids and feeding them for us and just making things a lot easier...



Last but not least, look at this picture of Ethan's friends at Mrs. Kathy's house...you know, my AMAZING babysitter that I have had for over 9 years....


Guess my rollercoasters were not all that bad today, in fact Holland was ok today because I have the most amazing friends and family from Italy....

This is gonna be ugly

WARNING - this is gonna be ugly....raw...honest......

You see I am a control freak, Type A, OCD whatever you want to call it, I am it.  I keep lists and notes and  check things off as I go.  I am a planner, so this last 2 years has rocked my world.  Totally and completely not in my life plan.  Ha! I once heard a saying that if you want to see God laugh, make plans.  Guess he is laughing now!!

Last night after I got home, the kids got baths, I made lunches, did 2 loads of laundry and started picking up Ethan's toys off of the floor.  And that is when it happened.  It hit me like a ton of bricks that big ugly monster that creeps up on me just when I think I can't go any further.  Have you ever seen that movie Monsters Inc?  Well, it's like I'm a little girl in bed and a really dark scary monster is staring at me from the closest.  I can't breathe and I can't move.  He starts talking fast and I can't make him stop, here is what he said to me last night....

  • What if this is it? What if this is the last time you pick up Elmo and put him in the toybox?
  • What if  you should have been holding him more on Monday instead of mopping the floor and putting away laundry?
  • What if the next time you see him he is not sleeping peacefully in his Daddy's arms because he has gone to be with Jesus?  Cause this Mito is gonna get him.  This is something Mito kids die from, stupid colds that turn into pneumonia.  This is how it happens...you are gonna outlive him.

Oh I hate that dark Monster.  But just when I think I can't get up and fight him.  God whispers in my ear, Peace my child, I will not forsake you.  So I get up off of that floor and put Elmo back on the floor because Ethan will be home to play with him again and walk up the stairs to go to bed and find this:

A little "Peace" of Heaven after a day from Hell...

Tuesday, March 16, 2010

Ethan is in the hospital...


Sweet Ethan is in the hospital.  He was having trouble breathing and keeping his oxygen levels up so the doctors thought it best if he be admitted.  I can't say that I am totally upset by this.  Seeing your baby turn blue is not normal and not something a Mom should witness so he will be better off tonight with a nurse and his Daddy!  Chris and I stayed with him today and my wonderful parents picked the other kids up for us.  I came home to take care of the other 3 tonight.  It's always such a hard choice, whichever I choose, stay at the hospital or come home.....I miss out.  After I get them off to school in the morning, I will head back but for now here are some pictures from today....

Monday, March 15, 2010

Meatballs & Pneumonia....

Last night Ethan couldn't get enough of my homemade meatballs. I mean, really, I think he had 3 servings!!! He was happy and having a wonderful time with his sister but it went downhill fast....







And this is Ethan tonight....




He woke up in the middle of night with a horrible cough. He was very restless and uncomfortable and by this morning he was having trouble just keeping his head up. This is our reality now that we know he is a Mito Kid. Ethan has always had trouble getting over a simple cold or stomach bug but now we know why....guess that's supposed to make it easier?

We headed to Dr. T first thing this morning and Ethan was diagnosed with Pneumonia. He was having trouble keeping his oxygen up. They gave him 2 breathing treatments and that seemed to help a lot and after 2 hours he was able to keep his oxygen up so we headed home. Yeah! We are doing breathing treatments every 3 hours throughout the night and he is on a high dose of antibiotics. Hoping he does well all night and we don't end up in the hospital! That is the goal now....

Thursday, March 11, 2010

MITO WHO WHAT WHERE????



We know now after 15 months of searching and trying to get an answer we know that Ethan has a Mitochondrial Disease. We are not sure which string/type as we are waiting for yet another blood test result. But the other 6 came back that he has it....







And it all makes sense....the cold hands/feet, the hypotnoia, the fatigue, the developmental delays, the kidney issues, the fact that he just can't get a cold...he ends up in PICU with RSV for 10 days...it all makes sense now.




So we will continue on and meet with a Metabolic Doctor and take a little trip to Atlanta for a muscle biopsy and read and study and read and study and continue our visit in Holland because I have always loved tulips....




Wednesday, March 3, 2010

Don't be retarded...

I've said, you have said it, we have all said it. But only now that I actually have a child who has intellectual disabilities do I understand just how hurtful that word is. Today is national pledge day to stop the use of hateful and derogatory words that hurt people like my sweet Ethan. Won't you join us? http://www.r-word.org/



I am trying to make an effort when I hear other people say the word, you know the "r" word to stop and tell them what it really means when they say it. Sometimes that is not an easy conversation to have, but for this guy.....







Who enjoys watching Baby Einstein with his pal Curious George, I would do anything...