Wednesday, May 6, 2009

Prayers for Ryan

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

23 comments:

Anonymous said...

Jenn, I have been thinking about you so much and am so, so sorry to hear this latest update. It all seems outrageously unfair and once again I commend you for your strong faith... I know God is holding you in this and I am just so sorry for the fear and sadness. My family and I will keep praying for Ryan and you all. Love to you, Anne Koetting

Anonymous said...

Chris and Jenn, you guys are in our prayers during this difficult time. We were sadden by news from Aunt Joyce yesterday, and have had a candle burning since.

We are truly amaze how strong the two of you are, to be able to send out this BLOG. Thank you for keeping us informed. Love,
Uncle Ronnie and Aunt Maria

Anonymous said...

Chris & Jenn, Thinking about all of you and wanted to let you know my thoughts and prayers are with you during this difficut time. I will pray for strength for all of you and the hope that all news from now on is positive. Ryan is a beautiful child with wonderful parents. Thanks for the updates, Maureen Henigman

Zehr_Family said...

I don't know what to say, except I will be praying for all of you. I know we have never met, but you all seem so much like good friends from the blog. Your Faith and strength are so amazing it inspires me to keep trying to heal the problems in my family. Please know I will be praying for you and will post this on our prayer list. No matter what Ryan is in God's hands and will be cared for always.

Kristi Zehr
Colorado

The Frost Family said...

Guys,

Just wanted to let you know that you are in our prayers. God is holding all of you in the palms of his hands.

The Frost's

William, Megan and Avery said...

I can't even find the words to say... I'm praying for you and your precious family- for answers, and peace. God is faithful, He will carry you through!

Megan

Barb Vaughan said...

Jenn,
I am so sorry and sad to hear your news. Such a beautiful little family to have so many challenges seems so unfair! Continue to be strong and have faith. You all will continue to be in my prayers! Love, Barb Vaughan

Anonymous said...

Jenn,
You, Chris, Charlotte and little Ryan are in mine and my family's prayers. My heart is so heavy for you. I pray for you to feel Christ right beside you as you face this in the life of your family. What an amazing and precious family you are.
Love, Jennifer Bartholomew

The Smith Family said...

Jenn & Chris,

We are so sorry to hear what you guys are going through right now. Our thoughts and prayers are with you and little Ryan. I hope the MRI went well this afternoon, he is recovering well, and that you will get some positive answers very soon!

Justin, Amber & Nathaniel Smith

Anonymous said...

Jenn-
I am so sorry to hear about Ryan. I can not believe that your family is being tested again after al that you have already been through. I will keep your precious boy and the rest of your family in my prayers.
Julie Zarbo

Cara Chitwood said...

Chris, Jenn, Charlotte and Ryan. My heart and prayers go out to you all. God brought about many blessing with Charlotte and I pray he will bring Ryan through all of this too. We have an AWESOME God who performs AWESOME mircles.

John & Kelly said...

Jenn,

I don't have words to tell you how sorry we are to have to go through this. We'll be praying for your family. As always, if you need anything, we are just a phone call away.

The Heidts

saretta and alexis said...

Jenn & Chris,
As so many others, I would like to express my deepest thoughts and prayers for you and your family. I am shocked and saddened by the news as I know so many others are. Y'all have been through so much already, and I continue to pray for your strength and perseverance.
Love to you,
Saretta

Rebecca Lemasters said...

Dear Hawn family-
We are thinking and praying for you. Thank you for keeping us informed, let us know what we can do for you. If you need us to watch Charlotte day or night, please call. Love- Becky and Brad Lemasters

Anonymous said...

Can't believe everything you're going through right now! Thinking of Ryan and all of you constantly today! I love you all so much, please let me know if there is ANYTHING that I can do. Praying that they will find the answers for you, and that you will continue to have strength!!

Kathleen said...

Jenn,
I don't know you in "real life" but follow your blog from Sarah Dickinson's. You are very strong and have an amazing family. I am praying for you and your family.
-Kathleen Van Roekel

Anonymous said...

Jenn and Chris: I'm sorry you are both going through this right now. Anthony and I will keep you in our prayers. May God keep you strong, and be with your little one right now as he is struggling to hang on. May He show you the love and strength you both need to get through this, and may He walk with you and carry you as you are both going through this. We just pray that He is with your family. I am so amazed at how strong you are...first of all to deal with this, but secondly, keep your family informed. May God Bless you both, and keep by your side. Love, Megan Oliver (Laura Beth's younger sister.)

Anonymous said...

Jenny, Chris, Charlotte, and Ryan,

I don't know where to begin. I am sitting in our living room, reading over and over everything you have posted online. I am crying and thinking of you all so much. We wish we could be there to spend time with you and Ryan. After talking with Mom tonight...we just feel so helpless. We are thousands of miles away, and we want to be there with you right now. We love you all so very much, and we are praying for Ryan as much as we possibly can. We are so very happy that we stopped by to visit before leaving for England, because we got to see and hold the most precious baby in the whole world. He is so loved, from so many people. Please know how much Matt and I love you all, and that we are thinking of you and praying. With Love, Matt and Laura Beth

Anonymous said...

Jenn,I continue to be amazed at your strength.I am praying for you and know God is with you and your beautiful family. Our thoughts are with you. Melissa

summermiller said...

Hi Jenn. This is Summer. I just want to know that my thoughts and prayers are with you. We lost a son 4 years ago very unexpectedly to SIDS. I feel your pain and heartache. There are no good words at a time like this just rely on Jesus and HE will be your strength! Hang in there!!

Anonymous said...

Chris and Jenn,

This news is just devastating to me. I can't even begin to fathom it. I will be praying for you.

Rich Baker

Brad and Jamie said...

Chris and Jenn,
We have been thinking about you and your family. Just wanted to let you know that you are in our thoughts and prayers.
Stay strong.
Love,
Brad and Jamie White

Anonymous said...

Hi this is BreJeanna, I use to get in the pool with Charlotte and Ranken Jordan. After hearing of your news my heart immediatly went out to you and I wanted you to know that you and your family will be in my prayers. Remember no matter how it looks, there is NOTHING that God can't handle. Love and blessings, BreJeanna