Heavy Heart...

First off, everything is OK in the Hamilton House and Ethan is doing MUCH better.  I hate to jinx myself but today is 4/30 and if we can manage to get through the day without an overnight hospital stay than this will be the first April since Ethan was born that we haven't spent in the hospital :)

Now, on to my "heavy heart".  Most of you by now have seen the horrible destruction left by the tornadoes in Alabama. 

My heart has been heavy and I have been praying for all of those who lost homes and family members.  My "Mom" (ya'll know, the woman who "raised" me) grew up in Alabama and has cousins who lost their homes.  Thankfully, our family all survived and we are so thankful.  I have been trying to figure out a way to help -  through one my favorite webpages that I check everyday in an effort to find the best deals - Living on Love and Cents,  she posted a link to a site Saving toward a better life (very cool site that I will be following with great ideas on saving money) who posted another great link to another really cool site that I will sooo be following now (don't you just love the blog world :)) Couponing to Disney. Here is a an excerpt from her site:

Wednesday my town was hit by a tornado. We suffered loss of homes, businesses, vehicles, etc. Praise the Lord we did not suffer many losses of life. Unfortunately, it wasn’t over. Later in the day, more tornadoes touched the ground in Alabama killing at least 194 people. This line of storms spanning 7 states took a total of 298 lives and more than 163 tornadoes reportedly ransacked the south.

Southerners are in dire need of some of the most basic necessities and I am working with my local church to start an online donation drive to help the victims of these storms. If you have any items that you would love to mail to us, we will gladly take them. Here are a few things that we are in need of:

toothpaste, toothbrushes, shampoo, conditioner, soap, deodorant, dishwashing soap, laundry detergent, hand sanitizer, clothing in all sizes, shoes in all sizes, blankets, small toys for displaced children, ziploc bags, bandaids and other first aid products, femine products, baby formula, diapers, baby food, toilet paper, Kleenex, food, individual juices, pet food and treats etc

We will gladly take anything that you are willing to send.

You can mail your donations to my church. We will ensure they get into the right hands. You have my personal guarantee that all donations will be distributed:

 

Disaster Relief

c/o First Baptist Church of Moody

902 Church Street

Moody, AL 35004

I prayed and asked God to show me how I could help and as always he answered my prayers. I wish I had big bank account with lots of extra money to donate but since I don't, I can use my sewing skills to help!  I am currently working on a University of Alabama Tutu Dress and during the month of May I will be donating 100% of the profit from any College Tutu Dresses that I sell to the Disaster Relief Fund at First Church of Moody. I will have pictures posted on my Etsy Shop - Made in the 'Ville and on my Facebook Page by the end of the weekend.  In the meantime here is a picture of a UVA Tutu Dress that I made for a customer.  Don't worry if you don't "Roll Tide", I will customize a college Tutu Dress of your college choice :) 

Please pray for strength and guidance for all of those affected by the tornadoes last week.

Pneumonia....again....

I guess the excitement of Spring Break has caught up with Ethan.  Poor guy started running a high temp last night and breathing irratically. I could hear some wheezing and was able to get him to the doctor first thing this morning.  His pulse ox was in the 80s but with a breathing treatment we were able to stabalize him and he was back in the 90s after his albuterol.  They ran a strep test which was negative but even after the treatment the crackling didn't go away so Pneumonia it is.  The first two years of his life we have spent some of March and April in the hospital dealing with surgeries and respitory issues.  I am still holding out hope that we are gonna fight this one and not end up in the hospital this April!  I've got a week so pray with me for this little boy...

The reality is that this kid goes down quick and pneumonia is one of those nasty things that will take a sweet life like Ethan's so we don't take it lightly.  The alarm is set for every 4 hours and will be getting up for his treatments for the next 48 hours. We go back on Friday for a recheck unless he gets worse.

In moments like this I hold tight to Deuteronomy 31:8

It is the Lord who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed.”

 

Happy Easter!

Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead... ~ 1 Peter 1:3.

Easter Egg Hunt

Last week we took Ethan to his last Easter Egg Hunt with the Early Intervention Team :(  He had a great time and so much has changed since the hunt last year!  This year, he actually was able to participate! 

Movin on up....

Ethan has moved on from the Babies Class at Romp n' Roll but luckily we have our same teacher and we just LOVE Ms. Emily! I'll be honest, I was very nervous about the transition.  We were comfortable in the babies class, it was small and quaint but Ethan needed more.  He had outgrown the class and so last week we tried out the next class up.  This class is designed for toddlers age 10 months to 24 months.  Most of the kids are walking in the class but not all so Ethan fit in just fine!  He loves all the musical instruments.  The drums and symbols are his favorite.  I can't say enough great things about what Romp n' Roll has done for Ethan.  I love how all of the staff love and treat Ethan just like one of the kids...

This is how we roll....

We spent most of the afternoon doing this....

Gracie conquered her fear and now can ride a bike without training wheels!

 I love how determined he looks here!

 Big brother showing little brother how its done!

 Watch out Anna Claire, Ethan is coming after ya!

Happy Saturday, go out and get your roll on :)

Still looking for answers...

Today was our appointment with two genetic doctors at UNC Chapel Hill Children's Hospital.  What a great facility.  It makes such a difference actually being at a facility where all they do is specialize in children.  I didn't have to get "Mama  Bear" once today!  Our appointment was at 9 and they had us back by 9:05 and spent 3 hours with us.

Ethan and Daddy reading some books while we waited.

Before Ethan came along, sure I noticed special needs kids, you know the one in a wheelchair that you see and you kinda look over and smile uncomfortably at the Mom 'cause you don't really know what to say.  I was that typical Mom going on with my life never thinking that one day that might be me.  You see some stuff in waiting rooms of children's hospitals that would scare the hell out of the most brave man.  Today, a young teenage boy was in the waiting room laying on a stretcher with a machine breathing for him.  He was paralyzed. Waiting his turn to be seen.  His Mother looked like an old pro at this game and it made me sad.  Made me sad for the other Mother sitting across from me with a newborn baby hooked up to an apnea monitor ...beep beep beep, the sounds were unfortunately familiar to me.  Ethan stayed on one for 6 months.  That poor Mother is just beginning down this very long and uncertain road. Don't know exactly all the details of these kids issues, but one thing is certain, we all share a bond.  The bond of the unknown.

The doctors we saw today were so kind and patient.  I was kind surprised because most genetic doctors are pretty abrupt and to the point. If you are in the NC area and need a genetic doctor email me and I will give you the contact info.

To wrap up our appointment I can tell you what we do know now:

• Ethan has had every test that is currently available in order to make a diagnosis for his "symptoms" all have come back negative for any known disease or syndrome

• The genome sequencing testing that we are trying to get into at the NIH may gave us an answer but it may not, just because they are able to sequence all of the DNA they may still not have an answer

• We are going to celebrate the small accomplishments and his progression no matter how long it takes

• Medical technology advances every day, because we don't have an answer today doesn't mean we won't next month, next year or in 10 years

• We will never give up

The only other 2 syndromes that he has not been tested for and fits "most" of the description of the symptoms can be tested with a blood test.  Our insurance doesn't cover it.  Another $2,000 for what the doctor said is a 50/50 chance.

For those that are interested the 2 syndromes are :

Simpson-Golabi-Behmel Syndrome - People with Simpson-Golabi-Behmel syndrome have distinctive facial features including widely spaced eyes (ocular hypertelorism), an unusually large mouth (macrostomia), a large tongue (macroglossia) that may have a deep groove or furrow down the middle, a broad nose with an upturned tip, and abnormalities affecting the roof of the mouth (the palate). The facial features are often described as "coarse" in older children and adults with this condition.

Other features of Simpson-Golabi-Behmel syndrome involve the chest and abdomen. Affected infants may be born with one or more extra nipples, an abnormal opening in the muscle covering the abdomen (diastasis recti), a soft out-pouching around the belly-button (an umbilical hernia), or a hole in the diaphragm (a diaphragmatic hernia) that allows the stomach and intestines to move into the chest and crowd the developing heart and lungs.

Simpson-Golabi-Behmel syndrome can also cause heart defects, malformed or abnormally large kidneys, an enlarged liver and spleen (hepatosplenomegaly), and skeletal abnormalities. Additionally, the syndrome can affect the development of the gastrointestinal system, urinary system, and genitalia. Some people with this condition have mild to severe intellectual disability, while others have normal intelligence.

Aarskog Syndrome - Aarskog syndrome is an inherited disease that affects a person's height, muscles, skeleton, genitals, and appearance of the face. Inherited means that it is passed down through families.

  

Causes, incidence, and risk factors

Aarskog syndrome is a genetic disorder that is linked to the X chromosome. It affects mainly males, but females may have a milder form. The condition is caused by changes (mutations) in a gene called "faciogenital dysplasia" (FGDY1).

Symptoms -  Belly button that sticks out, Bulge in the groin or scrotum (inguinal hernia), Delayed sexual maturation, Delayed teeth,Downward palpebral slant to eyes,Hairline with a "widow's peak",Mildly sunken chest (pectus excavatum),Mild to moderate mental problems,Mild to moderate short stature (which may not be obvious until the child is 1 - 3 years old),Poorly developed midportion of the face,Rounded face,"Shawl" scrotum, testicles that have not come down (undescended),Short fingers and toes with mild webbing,Single crease in palm of hand,Small, broad hands and feet with short fingers and curved-in fifth finger,Small nose with nostrils tipped forward,Top portion of the ear folded over slightly,Wide groove above the upper lip, crease below the lower lip,Wide-set eyes with droopy eyelids

The doctor asked us the following question: "If I can give you a definite answer of a diagnosis today with no cure, would it make a difference in the way you love and treat Ethan"?  The answer to that is NO and NO we wouldn't ever want to change him. We just want him to have the best and most comfortable life we can give him.

So today we will celebrate this sweeet boy with some Oreos:

PS - We getting ready to leave for Ash Wednesday service and I am giving up chocolate for lent, ya'll pray for me, k?