Tuesday, July 7, 2009

Pray for the Hawn Family.

I have been following this blog for sometime now and I feel that I ought to ask for Prayer on behalf of the precious family. Little Ryan has been born with SMA-1 and Charlotte his sister has a similar neurological medical issue. You can read more on: http://thehawnfamilyweekly.blogspot.com/. I'll let them share their own story in their own words.


Prayers for Ryan(From May, 2009)


It seems impossible that we are sitting here typing this entry. But, we are and want everyone to know what is going on with our family so that all of you can stay connected with us in a time when we are not sure what the next few days may bring. We know you all care and your prayers are much needed.

Over the past several weeks, we have become increasingly more concerned about our baby boy. He was born early at 34 weeks, but sailed his way out of the NICU in 9 days and continued to grow and thrive at home for the first several weeks. We were VERY happy.

As Ryan grew a bit older and we started expecting him to begin meeting some of the basic milestones * holding his head up* and also started noticing he didn't move as much as usual babies, we also noticed that he had been breathing heavily for quite some time. The symptoms we were noticing seemed gradual and at one point we even questioned when they started?

We first turned to our cardiologist for reassurance since Ryan was born with an ASD and we wanted to be sure that his heart was not comprimising his body from working properly. From a cardiac standpoint, we were given reassuring news and told that his cardiac defect had not changed, but it was likely to resolve on it's own. This was just prior to his 2 month birthday. The Dr. also noticed that Ryan did have labored breathing, but thought he had a condition called laryngo-tracheal malacia, aka floppy airway, but that he would grow out of this condition between 6-8 months of age.

The following week, we saw his pediatrician for his 2 month check-up, discussed our concerns about his lack of movment/poor tone and discussed the cardiac findings and the probable diagnosis of larygo-tracheal malacia. At that time, we were also concerned that Ryan's feeding habits were changing... not eating as much, taking a long time to eat. At that visit, we were reassured that Ryan's difficulties could be related to his prematurity and we would reevaluate him in 1 month.

A couple of weeks went by and we realized that he was not improving despite our efforts to stimulate him more and work with him more. His feeding habits were worsening, going from taking 5 ounces, to 4, to 3 without much explanation why. We honestly thought that again, because he was breathing so hard he was just wiped out and couldn't do much else. We clearly knew that his breathing was abnormal and scheduled a visit with the pediatrician again.

When she saw him this time she agreed with our concerns. We explained that he had deteriorated more and we were told we needed to see a neurologist and to start physical therapy and probably have a brain MRI done. We scheduled a visit with the same neurologist as Charlotte has since he knew our history, but he was out of town last week and we couldn't get an appointment until 5/5.

The week went on and over the weekend, Ryan became weaker and weaker, only able to eat 1-2 ounces at a time... He was tired a lot and breathing very rapid all of the time. On Monday, I knew we couldn't wait for the neurologists appointment the following day. He needed help now. We called our pediatrician to tell her that he needed help and that we were taking him to the ER. We debated on where to take him, Children's Mercy or St. John's but ultimately chose St. John's because that is where the neurologist was.

Our trip there was full of hope, hope that we would recieve the help we needed and help calm our frears. From the moment we arrived, we were given the attention and care that Ryan needed. We were quickly told that he would be admitted to the Peds ICU and that they were very concerned about his breathing.

Immediately, blood tests began and tests were done trying to determine why Ryan was struggling so much. Dr. Mantovani, the neurologist was consulted right away and saw us first thing in the morning on Tues. 5/5. Some things were ruled out fairly quickly, and after assesing Ryan, Dr. Mantovani told us that he needed more tests to help him give us a diagnosis. He felt that the problem lie in Ryan's neuro-muscular system and that Ryan's weakness was very serious. His gag reflex was poor and his suck was also very poor. They did a test that evening called an EMG, where they attatched small electrodes to Ryan's muscles and a tiny needle was inserted into the muscle to measure the activity with stimulation. This would help tell the Dr. where the neuro-muscular dysfunction was in the pathway from the muscle to the brain. He was present with the test and came to give us results immediately following.

The news were were given was not good. There was hope in the beginning that this may be something treatable, but the test confirmed that it is not likely. Dr. Mantovani explained that Ryan's dysfunction lies in the part of the pathway where the nerves connect to the spinal cord. The disease that he may have is likely related to some genetic component. At first it was thought it was completely different than what Charlotte has, but after doing research last night, Dr. Mantovani has decided it is more likely that he has the same genetic disorder as she, just presenting in a much more serious way. Even if he has a different genetic disorder that has caused his illness, the prognosis for our son in not good.

At the present time, we are trying to support him with oxygen and he is not on any medications. He heart has become enlarged since our initial visit to the cardiologist due to his breathing efforts. We have also noticed that his blood pressures, like Charlotte's, have been slightly elevated. Currently, Dr. Mantovani is in touch with Charlotte's geneticist, Dr. Grange and is trying to put as much information together about him before he attempts to send any blood work off for a possible diagnosis, but as you know, we have not yet been able to locate the gene that has caused Charlotte's problems, and we may not ever know what it is.

As I am typing, Ryan's MRI is in progress and may take 2-4 hours. They are scanning his brain and spine. He has to be sedated for the test and will be on the ventilator for it. He will come back to the ICU with the breathing tube and hopefully they will take it out tonight, but he may have difficulty being extubated. We don't know. They will hopefully start feeding him through an NG tube tonight, and we may have results of the MRI tonight.

Right now, we do not know how long Ryan will be here. We are still at St John's and Ryan may only have a few months to live. The unknown is very very frustrating and scary, but Chris and I have watched our son deteriorate quickly in the past 1.5 months and can only hope that it doesn't continue. We are shocked, scared, numb, tired, restless, but most important, we know we are surrounded by love, friends, family and prayer. We are taking our time hour by hour, day by day and loving the little moments that we have been able to connect with our son. We will continue to update everyone through our blog as it is heartbreaking to tell our story over and over. Please email us if you have questions or just want to say hi or comment on the blog, and thank you all for your love.

Love,
Chris, Jenn, Charlotte and Ryan


I Cooked Dinner(From Today)


I am not sure how to recover from a day like today, but know that I must in order to move on to the next. Because I don't have a crystal ball to tell me what is ahead, somehow, I have to keep going to be ready...

Today, I already filled you in on the catastrophic events that unraveled as the day went on. I had no idea that there was more in store. There are a lot of details I will spare you and some I may share that make you cry with me. But, it is what happened and the reality of the life we are living.

Chris got home sometime around 6pm tonight after picking Charlotte up from school. Ryan had spent some time with me on the couch once he finally woke up from his long nap of the day. I bathed him and he was somewhat content until his evening nap sometime around 5 PM. I was feeling confident in myself after handling the events of the day and decided to cook dinner. I miss cooking and putting a meal together for my family and sometimes feel guilty for not taking on that responsibility in the midst of all this. Not sure why, just sometimes think I should still be able to cook a meal. So, Chris and Charlotte get home and I decide to move Ryan from the couch to his bouncy chair on his side so we can "play" as a family together until dinner finished. When the oven buzzed, I fixed our plates, set the table and we got the kids over. Chris and I just moved Ryan while he was in his chair still to the table. When he is at our level, it is our greatest chance of actually being able to eat the food in front of us.

As I turned around, I noticed Ryan's color didn't look good. I had Chris turn on the light and then go get the O2 sat machine to check him out. Sometimes I think my eyes are playing tricks on me. But, they weren't. As we put the monitor on his foot, we have to wait for it to "sink up". Usually the lower numbers will show and then it pops up to his "normal" numbers. The low numbers didn't change, O2 sat 40, heart rate 60's and I noticed that the signal on the machine was good. I had Chris run to get my stethoscope to know for sure if it was right. Time seemed to stand still, as I listened to the slow thud of his heart and instantly knew he was in trouble. The machine now read O2 sat 35, heart rate 50. It was real.

We rushed him to the couch, Chris sprinted for the suction, cough machine and cranked his oxygen up. We pushed his medication right away and worked together to bring our little boy back. He was the palest shade of gray I have ever seen and we were terrified that we were losing him... again. We got the Wing's nurse, Nikki, on the phone and told her to come as his numbers weren't improving fast enough. Somehow, amidst my silent prayer and the commotion in the room, Ryan managed to bring his O2 sat up to 85, a number at this time that we were thankful to see. He moaned for the next 30 minutes as his O2 sat and heart rate came up, breaking my heart with every whimper. His heart rate finally peaked back to 170's and his sat to 98. He has never crashed his heart rate like that before and this may be an indicator of more episodes like this to come.

We aren't sure what triggered this. He is still having loose stools and could possibly have been bearing down trying to go to the bathroom. However, there was no messy diaper and after he was stable and we helped him go (as we have to do every day) he didn't drop his heart rate when he pushed then. So, that theory is unlikely.

In the middle of everything, our poor little girl was placed on the back burner. We had already placed her in her booster seat for dinner. Chris thought enough to put a magazine in front of her and we just kept talking to her as we scurried about to save Ryan.

When it was all "over", there really weren't any words. I struggle knowing that this will happen again. In the middle of everything, you do all you can to save him, to get him to respond to something, ANYTHING. And then, when he finally does and all you can do is sit by his side and listen to him moan, I question whether this was the time we were supposed to let him go. I don't know that I will be able to do that. He is going to have to let go first... Because there is no amount of preparation or wisdom for me to know when the time is that we are supposed to let God take his hand. I just pray that when he is ready that he never forgets the way my hand felt wrapped around his too.

All we really want for him is to be well... He isn't well anymore. He hasn't been for a long time, but as parents, it is an impossible request for us not to do everything we know to do. If we have done all of that and Ryan still does not respond, then that is when we will know... to hold our little boy.
I have no words really to describe how I feel inside. I think many of you out there probably already know because your guts are aching with ours. It is a pain I pray that others never feel, but also painfully know that others do. The worst part is that each time this happens, and he thankfully comes back, I know it will happen again. How do you recover from this, just to prepare yourself for when it happens again? Tomorrow will come and the events of that day will also take me by surprise. Tonight, I just wanted to cook dinner and enjoy it with my family. But tonight, it sat cold on the table as we prayed for our son's life.
Love,
Chris, Jenn, Charlotte and Ryan

No comments:

About Our Family

My photo
Missouri, United States
Clinton and I live in Missouri. Clinton works for CED, Inc. It is an electrical distributing company. He works in Inside Sales right now and is training for Outside Sales. I am an Independent Marketing Consultant for Melaleuca. I work from home and I really love what I do. Cora is 3 years old and she is so excited about starting Preschool in the fall. She loves everything Princess and her favorite color is Pink! Miles is 2 and he loves CARS the movie and is really into Thomas the Train as well. He is a ball of Fire and keeps us on our toes! And in keeping with stereotypes, loves the color Blue. Well, Wyatt Evan Fisher is here now!! He arrived at 5:03pm on June 22, 2008!! We are so very blessed and so very excited! He's 7 pounds and 5 ounces, 20 inches long! Healthy and so very handsome! We are so blessed and so proud of our new baby boy! Precious blessing from God!

Fisher Farm Family Cookout!

Fisher Farm Family Cookout!
Cora was swinging with her cousins.

Fun Fall Pictures!

We had a blast taking the kids pictures! It was a gorgeous fall day and the kids were in great moods! We really loved Miles "cheese" face! We tried to get him to say something else so he'd actually have a smile instead of the "cheese" lips! :)

I have included some of Hannah, Major and Cannon. They are great friends of Cora, Miles and Wyatt. We have had a great time being neighbors and friends! We have been really enjoying doing things together.



Cheese Lips!

Again with the lips! :)

The Ulitmate Mud Puddle Adventure

Miles LOVES Puddles! We have had a lot of rain lately and so the dead end fills up quickly with the run off. This is such a great joy for Miles. He loves water and jumping into puddles and making quite a mess of things! Take in mind that it's October and quite chilly out~this means nothing to Miles~he feels no cold. Now, since daddy took the pictures, please excuse the fuzzy ones! :)

Painting the Pirate Ship!

Cora and Miles love painting! They had a great time painting and I had a wonderful time watching them, taking pictures, laughing, being amazed at how quickly they are growing up, in awe of their creativeness. I am so blessed to be their mom. What a precious gift God has given me. I am so thankful!

Puddin'

I decided that it would be fun to let the kids play with their snack as a sensory activity! So, we had chocolate pudding to "paint" and granola and dried fruit to "decorate the painting" and their bodies as the "canvas"! It was a hit!

Miles wasn't sure at first~he usually revels in messes, but this time Mom was "letting" him and he just didn't know what to think about that! It didn't take him long to get into it though.

Cora had a great time and she dug in right away! When Dad came home from work, she invited him to join the fun as well! He took off his shirt and soon he was the canvas that the kids were painting! Cora wanted to make sure that his entire back was covered!

Wyatt remained an outsider to the event~which I am sure he appreciated! He really enjoys watching his brother and sister play. He smiled and laughed and cooed a lot! It was a really enjoyable time for us all! If you haven't had fun with pudding, I suggest you try!

Cora and her "Pudding Art Creation"

Cora and her "Pudding Art Creation"
We have chocolate pudding, granola, and dried fruit!

Puddin' face!

Puddin' face!

Miles was just getting started!

Miles was just getting started!

Now we are getting the hang of it!

Now we are getting the hang of it!

Cora loved the feel of the "squishy" pudding in her fingers!

Cora loved the feel of the "squishy" pudding in her fingers!

Daddy jumping in the fun!

Daddy jumping in the fun!

HMMMM......

HMMMM......

Almost got it all......

Almost got it all......

The Finished Paintings!

The Finished Paintings!

Now with silly faces!

Now with silly faces!

Cora's First Day of School!

Cora's First Day of School!

It was chilly morning.

At School

At School
In front on her school.

Her Cubby

Mrs. Creason~Cora's Teacher

Mrs. Creason~Cora's Teacher

Oh bath time!

Oh bath time!

May I Help You?

May I Help You?

Here's lookin' at you kid!

Here's lookin' at you kid!

Wondering if we could just go on our walk already!

Please???

Please???

Wyatt always falls asleep in his backpack on our walks!

Playing in the sprinkler!

Playing in the sprinkler!

Hannah, Grant, and Cora~Umbrellas to "save them" from getting wet....didn't work out so well!

Hannah, Grant, and Cora~Umbrellas to "save them" from getting wet....didn't work out so well!
Hannah and Grant are our neighbors. Hannah lives next door and Grant lives caddy corner across the street.

Hannah's brother Major.

Hannah's brother Major.
Major and Miles are good friends~they love to play together!

Fort Umbrella~all the kids are inside.

Fort Umbrella~all the kids are inside.

Miles coming to join the Umbrella Crew.

Miles coming to join the Umbrella Crew.

Cora Loves Playing With Finn!

Cora Loves Playing With Finn!

Clinton Jumping Over Cora!

Clinton Jumping Over Cora!

We take Jason's Dog Disel, for a walk everyday! Cora likes to hold the leash by herself.

We take Jason's Dog Disel, for a walk everyday! Cora likes to hold the leash by herself.

Cora LOVES to ride her bike! Everytime we are outside, she's on her bike!

Cora LOVES to ride her bike! Everytime we are outside, she's on her bike!

Miles Messes

Miles loves to make messes! This montage of cereal was waiting for me one morning and boy was I happy about it..... This isn't the first (or the last ~ I'm sure) time this has happened. If you don't get him food the moment you hear him wake up~BEWARE! Oh the joys of parenthood!

Miles Helping Himself to Breakfast.....

Miles Helping Himself to Breakfast.....

Cora and Aunty A making Cheese Cake!

Cora and Aunty A making Cheese Cake!

BIG SISTER

BIG SISTER

Cora is always asking to hold Wyatt

Cora is always asking to hold Wyatt

How Sweet

How Sweet

Into the face paint from halloween.....

Into the face paint from halloween.....

Miles thought Wyatt needed some too!

Miles thought Wyatt needed some too!

Bath Time

Bath Time

4th of July

4th of July

Four Wheelin' Anyone?

Miles loves Uncle Paul's four wheeler! He just loves to run to the shed, get the helmet on (which used to terrify him) and climb on! If he can talk daddy into it (which isn't a hard thing), he gets to ride all over the farm!

Clinton Painting Cora's Nails

Clinton Painting Cora's Nails

Angela and Jeremy Reynolds

Angela and Jeremy Reynolds
This is my best friend and her husband.

Wyatt's first week!

We had so much fun spending Wyatt's First Week of life with Nani and Pop Pop! We drove down right after we were released from the hospital and Wyatt proved to be a great little traveler! He never made a peep! Cora and Miles were great helpers and loved having their baby brother in between them. Every time we got out of the car, Cora would say,"Mom! Don't forget our baby!" It was really cute. It was a lot of fun for the cousins to get a chance to spend time together too. It was a great week!

Our First Family Pic!

Our First Family Pic!

Playing Time

Playing Time
In Nani and Pop Pop's basement playing!

Balloon Swords!

Balloon Swords!
Safe Play?

Ping Pong anyone?

Ping Pong anyone?
Miles couldn't wait for his turn to play ping pong

Nani and Cora

Nani and Cora
They had matching hats! It was so much fun!

Proud Grandparents!

Proud Grandparents!

All the Kids with Nani and Pop Pop!

All the Kids with Nani and Pop Pop!

Diaper Head!

Diaper Head!
He decided that it would be fun to put his swim diaper on his head! He made the return trip home a funny affair!

Cora wanted to do diaper head too!

Cora wanted to do diaper head too!

The Arrival of Wyatt!

We were so very excited for the arrival of Wyatt! He arrived two weeks early, much to everyone's surprise! On June 22, 2008, at 6:30am, I noticed that it was going to be a very special day! I woke Clinton up and we began the "run around". We had to get everything cleaned and packed and ready for the next week. We arrived at the hospital and everything took off from there! He arrived at 5:03pm and was 7 pounds 5 ounces , 20 inches long. Just perfect! He was our smallest baby, but the size of a regular full term baby! He just seemed so tiny to us! And to think that most people have babies his size! We couldn't be more thrilled with our new little man! He is so precious to us! He is very content and sleeps very well! You can't ask for more than that!

Baby Wyatt is coming!

Baby Wyatt is coming!
I wanted a picture before Wyatt made his grand entrance!

Our Precious Little Man!

Our Precious Little Man!
Just a few minutes after he was born!

Mom and Baby!

Mom and Baby!
I couldn't be more thrilled with him!

Dad and his Son

Dad and his Son
He is so proud of his boy!

Big Sis and Wyatt!

Big Sis and Wyatt!
She sang "Mary had a little lamb" to him! It was so cute!

Wyatt Evan Fisher!

Wyatt Evan Fisher!
Our Precious Baby Boy! Loves to look around!

Nani and Pop Pop!

Nani and Pop Pop!
Happy Family!

Pop Pop and Wyatt!

Pop Pop and Wyatt!
Pop Pop was able to cut the cord! How cool!

Wyatt and Nani!

Wyatt and Nani!
We loved having Nani there for the Birth!

Uncle Jason!

Uncle Jason!
It was great to have Uncle Jason come and visit!

Summer 2008!

We are having a lot of fun this summer right in our own back yard! We got the kids a little pool that they love and a swing that I (Amy) love so that we could enjoy being outside together as a family! God has blessed us with great children, great weather, and so much love for each other. I am always thankful for how well the kids get along. I am looking forward to seeing how Wyatt will fit with our little family.

Cora is growing up so fast and she is "teaching" Miles new things all the time! Miles grows so fast "learning" from his big sister and he loves to copy her. He follows her and repeats what she says and does what she does. It is really sweet to see them playing together and learning from each other.

Umbrella Time

Umbrella Time
Cora loves her little umbrella!

Fun in the Summer Sun!

Fun in the Summer Sun!
They love their little pool!

Pool Time!

Pool Time!
They love Splashing in the Pool!!

Eatting Pluots!

Eatting Pluots!
Snack time in the pool! Can't get any better than that!

We love eachother!

We love eachother!
They are best friends!

Cora and Miles Club House!

Cora and Miles Club House!
They love this little house!

Painting!

Painting!
The kids discovered that if you get chalk wet, it makes "paint"!

Coloring!

Coloring!
Cora loves to color.

My yellow picture!

My yellow picture!
Cora wanted to make sure that I took a picture of her with her picture!

My Favorite Cuties!

My Favorite Cuties!
They are such posers!

My Studly Man!

My Studly Man!
Miles is such a big boy!

Precious Princess!

Precious Princess!
Cora is such a Princess!