And I cried...

So, after Ethan's big surgery (you know the one he had at 3 months when they repaired his kidney obstruction, gave him blood transfusions and revived him not once but twice) we came to the realization that Ethan not only had some medical issues we were going to have to deal with but he had some developmental challenges.  I remember laying in bed one night, crying for what could have been, for what should have been and what wasn't going to be.  I feel asleep that night praying that God would give me an answer.  I prayed for his guidance and help.  The next morning I set out to find help and as he always does, God led me right where I needed to be....

I still remember the day that his "team" came to our home for the first time.  So, I was slightly overprotective, OK, really I was way overprotective.  I remember thinking to myself that I have had 3 kids, do I really need someone to come to my home and tell ME how to help my own kid. Ha!  Well, the truth is, I did.  Dealing with a child with Special Needs is like being a 1st time Mom all over again.  I had lost all self confidence in my Mama Skills.  I couldn't help my child do simple things like lift his head, roll over, eat, crawl or stand.  I was lost.

Until I let Mrs. Vicki, his Occupational Therapist into his life. Once I got over the fact that I needed help, that is. She made me feel confident again, she answered all my questions, gave me ideas about how to help Ethan and always treated him with so much love and kindness. Even when he wasn't "feelin" it. I'm not sure how I would have gotten through 18 months without her. 

Ethan is transitioning to Physical Therapy and today was Mrs. Vicki's last visit with Ethan.  And I cried...yep, sure did. But I wasn't crying for what could have been, for what should have been and what wasn't going to be. I cried because I'm gonna miss her, I cried for all that he has accomplished and I cried because I know in my heart God has sent her to our family to help us so that I could become this confident Mama again...

Thank you from the bottom of my heart...

Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus. 1 Thessalonians 5:16-18

Teal Toes

September is Ovarian Cancer Awareness Month.  Did you know that?  Do you know what Ovarian Cancer is?  I do, I know family members, friends, bosses, real woman, young and old who have lost their life to this deadly cancer. I'm at risk...and you may be...

Even in its early stages ovarian cancer has symptoms. Research indicates that 95 percent of women with ovarian cancer had symptoms and 90 percent of women experienced symptoms with early-stage ovarian cancer. Symptoms vary from woman to woman and many times depend on the location of the tumor and its impact on the surrounding organs. Many of the symptoms mimic other conditions such as irritable bowel syndrome.



The Gynecologic Cancer Foundation, the Society of Gynecologic Oncologists and the American Cancer Society, with significant support from the Alliance formed a consensus statement on ovarian cancer. The Ovarian Cancer National Alliance has endorsed the consensus statement, which was announced in June 2007. The statement follows.



Historically ovarian cancer was called the “silent killer” because symptoms were not thought to develop until the chance of cure was poor. However, recent studies have shown this term is untrue and that the following symptoms are much more likely to occur in women with ovarian cancer than women in the general population. These symptoms include:



•Bloating

•Pelvic or abdominal pain

•Difficulty eating or feeling full quickly

•Urinary symptoms (urgency or frequency)

Women with ovarian cancer report that symptoms are persistent and represent a change from normal for their bodies. The frequency and/or number of such symptoms are key factors in the diagnosis of ovarian cancer. Several studies show that even early stage ovarian cancer can produce these symptoms.



Women who have these symptoms almost daily for more than a few weeks should see their doctor, preferably a gynecologist. Prompt medical evaluation may lead to detection at the earliest possible stage of the disease. Early stage diagnosis is associated with an improved prognosis.

So if you are getting a pedi this month, why not get 'em painted Teal to show the world you care...to learn more go here ....Teal Toes

Back to School....

Today was Back To School for The Hamilton Kids....

Jake AKA "Cool 4th Grader"

Gracie AKA "Sweet 2nd Grader"

Anna Claire AKA "Sassy Pre-schooler"

And of course we can't forget this Sweet Boy who is loving his new Personal Aide/Nannie more and more every day!

Still no answers...

Today we met with Dr. Teasley to review the results from Atlanta.  Here is the overview:

Ethan's current score for diagnosing him with Mitochondria Disease Clinically is a 4.  That puts him in the "possible" category.  Probable is 5-7 and Definite is 8-12.

His Biochemical Criteria score is 1.  Anything between 1-7 is considered normal.

His Genetic Criteria is currently still be tested.  They are currently studying the banked muscle for mtDNA or nuclear DNA mutations.  That won't be back for another month or so.

So basically, his scores right now are  low and that is why Dr. Shoffner put in his conclusion that he was leaning towards him not having Mitochondrial Disease.  If some reason the DNA Mutations come back with some crazy results than that would change everything.

The good news is we know he definitely doesn't have Prader Willi, Angelman Syndrome, Leigh's Disease, Rett Syndrome, fatty oxidation disorders, glyco storage disease or Pompe Disease.  Thank God.

Dr. Teasley said she has spoken with Dr. Bodurtha (our Genetics Doc) and they feel that right now Teasley can not do anything else to help him and that Bodurtha will take over.  We see her in the middle of September.  Dr. Teasley did say that Dr. Bodurtha will talk to us about  some testing that can be done in Bethesda at the National Institute of Health's Rare Disease Center.

So we are still looking for answers....

The results are back from Atlanta...

And so I got the email from Dr. Shoffner's office in Atlanta, you know the secure one labeled Hamilton Biopsy Reports.  I fumbled about 5 times trying to remember my password until I finally figured it out and viola 63 pages of medical reports came spilling out. 

I quickly scanned for an overview or a conclusion and finally came upon it....

"The data supporting a mitochondrial disease in NOT very convincing, Patient does have a small defect in the Complex I. "


Hmmmm.....so I'm thinking to myself that it's good news that my kid doesn't have defects in the other complexes and only a small defect in Complex I but what does that mean exactly?  Guess we will find out next week when we meet with the Neurologists, Dr. Taylor and Dr. Teasley. 


Although further down the report it does indicate Shoffner wants a follow up in Atlanta with us and recommends another live muscle biopsy because even though he has some of Ethan's thigh muscle frozen for further testing he wants another live one to test for some other Mito stuff.  Um...NO....and thats all I'm gonna say about that for now...He does want him to have some testing for Muscular Dystrophy, specifically myotonic dystrophy" http://www.mdausa.org/publications/fa-mmd-qa.html.  Any body heard of it?

So our journey continues for a "DIAGNOSIS" or does it?  Chris and I are divided.  Its not that I don't want a pretty diagnosis to wrap up in a box with a great big ribbon but come on.  We have been dealing with the what ifs since I was pregnant with Sweet Ethan.  I think if he's healthy and he is progressing (even if it seems sometimes at a snails pace) than just leave well enough alone and lets enjoy him.  Chris seems to think we need to go until we get an answer.  I don't know whats right, maybe Dr. Teasley can give us some advice.  I'm just tired of putting our life on hold, I want to enjoy him and not think everytime we have a holiday that I better take a lot of pictures because it might be his last.  Ugh...

So onto better thoughts....he is doing great with his glasses!

And Gracie started cheerleading practice this week and I somehow let them talk me into being an Assistant Coach.  Actually, I am enjoying the time alone with just Gracie and being able to give her my attention, it makes her feel important.  Now if it just wasn't 100+ degrees.  Ahh, maybe I'll lose some pounds with all the sweating I'm doing :)

What is up with Ethan?!?

Hey - It's Ethan, my Mom has been lame about updating the blog this month, so I'm here to fill you in on whats up with me....

I've spent some time chillin in the pool because it has been one HOT summer here in Virginia!

It's a tough job but someone has to do it!

.

I got fitted for some glasses, they look like this except mine are blue.  I had a great time and was a good boy at the doctors office.  All the old ladies just loved me.  My Mom should have taken a picture of me sitting up on the counter getting fitted with my cool glasses but well you know sometimes she is a little crazy and forgets to take the camera.  Don't worry folks, when they come in next week, I'm sure she will take enough pictures of me wearing them and tell you all about it.

I also got measured and fitted for my new wheelchair/stroller thingy that is suppossed to help keep me from slumping over and keep me in.  My Mom is all excited 'cause she can turn the seat around so she can see me, not sure why she thinks that is such a great idea? Not really my idea of a fun outing...but whatever...

I went to my friend Ava's 1st Birthday Party and she was just smitten with me but I mean really can you blame her?

Look at her, going in for the big kiss...girls these days are just sooo forward.  I mean, I'm not complaining or anything....

And because I'm so cool and all I gave up my bottle.  I think my silly Mom was a little sad about that.

I've been pulling up to standing and I did it 5 times yesterday for Ms. Deb who comes to "play" with me once a week, she is part of my Early Intervention Team.  I have not pulled up yet in front of Mrs. Vicki my OT because I like to mess with her.

Our AC went out in the middle of the night and we all got to have a sleepover downstairs on the floor.  That was pretty fun.  Although, my Mom was a bit grumpy I was cool with it all.

I had to do my pulse ox study the other night.  I LOVE the fact that my toe lights up bright red and think it is soooo awesome to pull that off.  My Mom get's all mad about it and we didn't get much sleep that night.  I still can't figure out what her deal was, I mean it's no biggie I got to nap the next day so the fact that we didn't get much sleep that night shouldn't get her all bent out of shape.  Geez...

My brother and sisters have been going to VBS this week so I joined them one evening and lasted and hour and a half.  Pretty good for me.  I had fun playing with this little boy until he tried to tell me what to do...I wasn't feelin that so much.

I will leave you with a little video from my play therapy date yesterday...

Later folks, I gotta get ready for a big outing on Friday, my Mom and her bestie are taking 7 kids to Busch Gardens...yep, they are crazy!

Congenital

It is not often that I have a minute alone with just one of my kids.  So when I do, I treasure it, I drink it in and hold the memory tight because before long I'm sure I will have a very quiet house.  Gracie and I have a standing date on the 1st Sat of every month.  It may be something small like going to Starbucks and having Hot Coco and just talking or it may be going to get a Pedicure or just hiding out in my room, locking the door and watching a movie.  Whatever it is, I try to make it special because girls need their Mamas!  I will continue this with Anna Claire when she is a little older.  I don't often get special time with Jake because, well, I'm just not cool enough to hang out with Jake....or so he thinks!

But this morning, after making lunches, getting kids dressed, dropping them off in different places all before 7:30 I realized that I had Jake in the car all to my self.  So we talked ...about random stuff but I listened, really listened, no interruption from my blackberry or the radio just me and him and here is how our conversation went:

Jake - "Mom,  we have a kid at camp who has something wrong with him"

Me - "What do you mean, wrong with him"?

Jake - "Well, his ribs stick out really far and he has trouble breathing, he can't run and play like the rest of us and sometimes he has to use oxygen, I think it's a congenital issue".

Me - "Congenital"?

Jake - "Yeah, you know Mom, born that way, how God makes you before you are born"

Me - "Hmm, so what does he do all day"?

Jake - "Me,  Draven and Gavin and ask him to sit with us at lunch and we invite him to play games like board games and stuff that won't make him tired"

Me - "That is very nice of you boys"

Jake - "I guess, I wouldn't want my brother to not have anyone to play with if he was at camp because of his congenital issue so I figure maybe God will remember that when Ethan is my age and someone will play with him when I'm not around"

Me - (hiding behind tears falling behind my sunglasses) "You're a good boy, Jake, God made you that way you know, right?"

Jake - "Geez Mom, your not crying are you?" "You can't drop me off like that, get it together..."

And that is how our 3 minute conversation went on the way to summer camp today and I will drink it in and forever hold it close to my heart.....

Proverbs 22:6

Train up a child in the way he should go: and when he is old, he will not depart from it.