Supporting her brother.

A Breakthrough!

After four years of attending the clinic at Hopkins, Wyatt had his blood pressure taken without crying, sitting on anyone's lap, and without clowns or nurses blowing bubbles and acting goofy! A great day at the pulmonary clinic! It seems like no big deal, but it makes me feel so good:)

Congenital Diaphragmatic Hernia Awareness Day 2012

What have we been up to lately? Wyatt is four and a half now. As you can see by the pictures, Wyatt has been enjoying a normal life: T-ball, gymnastics, preschool, and music class. He still attends weekly PT sessions at KKI and Infants and Toddlers. He is still tube fed and on oxygen while he sleeps. We are going to attend a six week feeding clinic this summer and he is currently going through genetic testing. We just discovered he has an abnormal hip which explains the delayed walking at 3 1/2 and abnormal gait. We are not going to let that stop us from having fun and getting involved!! He is a smart little boy full of wonder and enthusiasm. We are so proud of all his accomplishments. He is eating more solid food each day. My goal for Wyatt is to be totally independent from the feeding tube and oxygen. He has one more year before Kindergarten, so I think we can do it!! We pray for all the CDH babies who are angels and for the babies that are fighting for their lives now. Research says that half of all babies survive, hopefully that number will increase with more awareness.

Wyatt turns Four years old!

This post was written on Wyatt's birthday and I just discovered it in the drafts on March 31st.

Wyatt is four! It is his very first birthday that he is walking with out assistance, so we are having a birthday month! I reflect on how things are different than Wyatt's first year of life and how some of them are still the same. I would never call us normal, but we have a "new normal" that we are happy with! I remember praying daily while Wyatt was his sickest in the hospital. I prayed for him to be happy on Earth with us. Miracles do happen and I have a very happy, energetic, full of personality kid! I am so happy of all his accomplishments so far. It's his personality that got him through the most depressing times. He has experienced so much stress and handled more in his four years of life than some adults do! It is my mission now to limit the stress in his life and let him enjoy being a four year old little boy! Here are some updates:

Wyatt is still on oxygen while he sleeps. He is on 1/4th to 3/4ths at night, napping, and in the car. We have had two sleep studies and I have even tried to turn off the oxygen while he is sleeping (while hooked up on the pulse ox) and he still destats while sleeping, so he continues to remain on oxygen.

Wyatt still has his feeding tube and gets fed all night long 75ml/hr and four bolus' during the day time.

He still sleeps in our "dining/playroom"

We still have nursing to monitor his progress while I work and while we sleep.

Wyatt still has PT

Now on to the things that are different!

Wyatt is now walking, running, and jumping! It is not a normal walk, but he is progressing. We are working on his endurance, so far we can walk the length of the driveway and then wants to be carried!

Wyatt is experimenting with food and showing interest in all kinds of food. He is not consistent, but he will try to swallow more food. I recently made an appointment at the feeding clinic at Mt. Washington and the next available is in April.

Wyatt is above average in speech and is doing great in school. He is cognatively meeting his developmental milestones. He can write his name, identify letters and numbers, carries full conservations with adults, plays music (guitar and drums), sings, loves books, etc...

He is potty trained! At least during the day, I don't expect anything at night since he is fed all night long.

Things we are working on:

Socializing more. Wyatt enjoys to "hang out" with adults more so than kids his age. He can carry a full conversation with a grown up, but is shy around kids. Because his physical limitations, he can't keep up with kids on the playground, on a field, etc...Also Chloe has many friends that come over to play, but Wyatt does not. Thank goodness for preschool and having a sister 14 months apart, we are working on this.

Pure Sweetness

Going to have a long day at Hopkins tomorrow for Wyatt- general surgery follow up, blood work, x-rays, PT at KKI.  I just think about his sweetness and all that he as been through.

Preschool

One of the best decisions we have ever made was enrolling Wyatt in preschool.  He had an opportunity to socialize with his peers and just be a regular kid: playing, talking, reading, singing, being crafty, etc....  It was such an ideal situation for him.  I was so nervous to send him to school the first day, but I think because of preschool, his day nurse, and PT is the reason why he is walking and thriving.  Recently Wyatt had his end of the year celebration and it was bittersweet.  He has progressed the most out of all the kids in his class.  He entered preschool not wanting a snack, not wanting to wash his hands or put his hands in finger paints (because it made him gag), not walking, and the list goes on.  He ended preschool wanting to eat his snack and drink, making a project using finger paints (my Mother's Day present), walking, and not protesting when washing his hands.  It was such a successful year!  Wyatt made friends (and I did too!) which I hope last a long, long, time.  In the evening, Wyatt and I went on a date together to Chick Fil a!

Endocrinology Update

Wyatt's awesome GI doctor noticed a pattern in Wyatt:  he is not growing like average three year olds.  His growth curve pattern is on a decline from 25%, 5% to 3%.  A healthy three year old should be growing and the curve should stay steady or go upward.  This is not the case with Wyatt.  We recently took Wyatt to see an Endocrinologist who did some extensive blood work and an x-ray of his hand.  We got the results, which indicated we needed more testing:((  Wyatt's blood shows high amounts of Alkaline Phosphatase- http://www.nlm.nih.gov/medlineplus/ency/article/003470.htm and his hand x-ray showed an abnormal growth plate.  What does this mean??  Who knows?  It could indicate malnutrition, which the doctor phased out because his other blood work was fine and we control his nutrients through a feeding tube, which is monitored by a doctor.  It could be trauma to major organs (which could be his case), and many other conditions.  So we need to get more blood work and an x-rays of his hand and kneee.  Wyatt also did not begin to walk until age three, his walk is not a normal walk, and he still has hypotonia (low muscle tone).  The doctor said most endocrine issues are treatable, so we will take each step at a time and deal with whatever is given to us.  It just goes to show that CDH is never ending and I think it's Wyatt's mission to make my head full of gray hair!!!

CDH Awareness Day- March 31st

Thursday is CDH Awareness Day.  Wear turquoise in support of CDH Awareness in hopes that one day doctors/researchers find a cure and take the survival rate from 50% to 100%.  For now, because most CDH babies receive numerous blood transfusions, you can give blood.  Here in our household, we have a shirts picked out and ribbons made for the BIG day!!!

Here are some facts so that you can help spread awareness:

1.The survival rate for CDH babies runs at 50%. Approximately 1600 births a year; 800 babies survive.

2. CDH occurs in approximately 1:2500 births

3. There is no known cause for CDH.

4. There is no way to determine if your CDH baby will or will not survive. Some babies that have severe CDH survive, while other more mild cases do not.

5. There are several types of CDH with the left sided being the most common (this is where our case falls).

6. Many families have never heard of CDH until they are diagnosed with it.

Pulmonary Check Up

It's sideways, but here is Wyatt's most recent check x-ray dated 1/21/11.  We just had our pulmonary check up on Friday, so all the results were explained to us.  Bascially it's unchanged from previous x-rays.  It's not a normal chest x-ray, but it's normal to us!!  Here is the report:

" Pulmonary vasculature seems asymmetrical , ie. decrease in the left.  Faint left infrahilar density.  Somewhat blunt left lateral costophrenic angle.  Moderate distention of the lower most portion of the esophagus.  Metallic suture structures projecting to the left lung base.  VP shunt projecting over right hemithorax and right hemiabdomen as far as included.  Transcutaneous enteric tube, tip projecting to the the left upper abdominal quadrant, medially.  Left lower lobe atelectasis, consistent with relative left-sided pulmonary hypoplasia. "

Did you get all that??? 

Radiothon

Thank you to Johns Hopkins Children Center and Mix 106.5 for helping to raise awareness for CDH and raise money to a worthy cause.  Wyatt's interview aired this morning.  I actually heard it on my way to work and I only have a 5 minute commute!  I thought that was a little freaky:)) 

Below is the link to his story.  The audio file of the interview is on the center of the page.

Click here for- Wyatt's CDH Story and Interview

Mix 106.5 Radiothon: Wyatt then and now

Tune into the Mix 106.5 Radiothon to help the Johns Hopkins Children's Center Wednesday, Feb. 23rd- Friday, Feb. 25th.  Wyatt will be one of the featured stories.

Wyatt has come a long way. Every time I look at him, I am in amazement of his success. With 50% survival chance, he kept me on my toes with many more gray hairs popping up. After every success, their seemed to always be a set back... I thought at his birth, he would be "too healthy" for ECMO, but he wasn't. I thought he would remain healthy on ECMO, but the machine that saved his life, gave him a brain bleed on the last day from the required Heparin. After he was extubated, I was so excited to hear his voice, but he was silent because of a paralyzed vocal cord. I thought we would dodge a feeding tube, but we didn't. I thought when we got home finally 5 months later, we were home for good, but realized after 3 reherniations and 10 surgeries we weren't. I followed many CDH kids and it seemed that they always got some kind of break, but we never did. But then I realized.... we did get a BIG BREAK... I have a handsome, alive, little boy!!! This experienced has showed me what life is all about... family, friends, and love. We treated Wyatt like a healthy newborn baby in the hospital. We read books to him, played music, brought in toys and pictures, and told him stories. You can only handle what God gives you and Wyatt is one tough little boy!

Today he is a robust, funny, caring, "older than his age", three year old who is thriving and loves life! Wyatt is catching up, people are amazed that he doesn't eat, walk, and still needs oxygen while sleeping. Well actually, he eats everything in sight, but doesn't swallow. At age 3, on Jan. 15th he stood up by himself for the very first time. He has been experimenting with taking steps since then and is now learning to walk. He knows everything a 3 year old knows... his ABC's, numbers, colors, talks in a billion word sentences. You can hold a great conversation with him all day long! I am amazed at him every day and so proud. Today, we have a new normal and life is a little different. I still follow stories of his CDH friends, take him to many therapy and doctor appointments a month, welcome a night nurse every night to make sure he does not aspirate. He is connected to a pulse ox, food pump, and oxygen all night long.... but I wouldn't trade it in for the world!

Thank you to the doctor's, nurses, and therapists at John's Hopkins and Mt. Washington Hospital for saving my child's life. Please check out the Radiothon this Wednesday Feb 23rd-Friday, Feb. 25th and donate! Wyatt will be featured on the Johns Hopkins website and Wyatt's story will be featured on the Radio- Mix 106.5.

Hopkins- http://www.hopkinschildrens.org/

Mix 106.5-  http://mix1065fm.radio.com/mix-106-5s-22nd-annual-radiothon/

Below are pictures of him when he was on ECMO, just a few days old

Holding him for the very first time at 5 weeks old...

A couple of months later...

Loving life at age 1 !

Wyatt today at age 3

Sharing friend at preschool with his teacher...

Standing up by himself for the first time...

Making his valentines for his friends

Playing in a band...

Hanging out with his preschool friends

Wyatt's preschool

I got to be one of the "Party Parents" for Wyatt's valentine's day party at his preschool. He also happened to be the sharing friend too. He decided to bring his Dinosaur Train dinosaurs that his Gran and Grandad gave him. Wyatt was a great presenter! He stood up in front of his class and told the class the names of his dinosaurs and told everyone who gave them to him. I was a proud Mommy:) He also got to be the bell ringer to signal clean up time! I also popped into Chloe's class during their "recess" time too!

Wyatt in school~ he does a great job playing with his friends:)

Chloe during "recess" doing an obstacle course