Monday, April 13, 2009

i have my camera now







Jonah is eating like a champ, regaining his strong voice, having less mucus, and breathing easier. I'm pretty sure he is just spoiled rotten, wants attention from smart, important medical people, and knows there are pretty nurses at the hospital. The great manipulator. He's having a very awake, content day and is seeming more and more like the old Jonah - happy, bright eyed, NOT starving.

However, we can't ignore the stridor, hoarse cry, and other symptoms he's had, and we still don't know what we're going to do. It could be he just has a cold that's caused all his symptoms. It could be that the acid reflux has caused some of the breathing issues and the mucus and gagging. OR IT COULD BE AIRWAY PROBLEMS. It's hard to know. If we scope and don't need to, we could cause him damage and actually contribute to what we're trying to avoid. If we don't scope and need to, he could suffer respiratory distress down the road. It's a hard call. Please continue to pray for wisdom for us as we make this decision (you guys talk so much about my instincts, and I just feel like my only instinct is to put my head in the ground), and wisdom for the doctors as we decide the best coarse at this point. Scoping is scary (scope going down, possible IV, sedation etc)... Waiting and seeing is scary...

... but we are not given a spirit of fear...

86 comments:

Jane said...

Great pictures Patrice and so glad to hear Jonah is doing better and to hear he is eating like a champ. What beautiful blue eyes! I am sure you will make the right choice whatever it might be. Just so happy to hear all is better. I know Leigh is looking forward to seeing all of you tomorrow. I will be keeping Seth. May God Bless and guide you, Matt and the doctors to make the right call. You all are constantly in my thoughts and prayers.

Anonymous said...

Jonah looks great - those big blue eyes are so expressive and just melt my heart! Praying decisions will be made and Jonah continues to eat and regain his strength.

Gail
Annapolis, MD

precious 3 said...

I absolutely LOVE the new photos! Now to go back and read the post!

Kristen said...

We are still praying.every.single.day. I can't imagine the decisions you are having to make, so I continue to pray as much as I can. :) Love and blessings to you all.

April said...

Jonah has the most beautiful blue eyes! I pray for Jonah multiple times a day and will continue to do so! Thank you for sharing all the great photos! Next time, you should have one with you in it! :)

precious 3 said...

I'm so happy Jonah is feeling better! I will be praying for his continued improvement, wisdom for you and his doctors, that you will know what he needs, and when to act, and that if he needs a scope, he will be protected from further injury. Enjoy this day, with your beautiful bright eyed Jonah!

Carla said...

Such CUTE pictures!!

Teresa @ Grammy Girlfriend said...

Such a cute boy...still praying...

Intelligence said...

He is too cute!! Glad to hear he is doing so well :)

APA and NBK's Mom said...

That little guy looks so content with his Daddy. So precious.

Praying for Jonah and praying for wisdom for you.

Peggi said...

I think Jonah is one of the cutest babies I have seen. Love his expressions. Glad he is feeling better.

Amber Schmidt said...

He is absolutely gorgeous! LOVE the first picture!~ So glad to hear that things are looking up!

Still praying in KY!

Anonymous said...

The new picture of your son are gorgeous..he is absolutely adorable. .we continue to pray for him and hope he continues to improve..EB will give you that "what should we do" confusion for the rest of his life..and there usually is not a perfect solution to anything you'll encounter..you just have to decide which is the lesser of two evils...and that choice will be up to you guys..go with your gut instinct..Don't spend so much time worrying about the next step that you miss the wonders of today..appreciate every moment and every milestone..time passes quickly..make the choices that put you at peace as you are the one that will have to live with them..As EB moms we all care about your son and your family..we feel in some way we must help you but each child is different so we just offer our experience/advice and you pick through it and find what pertains to your little one..Enjoy your day ...

Penny said...

Oh Patrice!

Those beautiful pictures, I love his eyes and he certainly does seem to be content.

I know you are nervous and scared. Try to enjoy these magical moments when Jonah is absolutely adorable. Find medical Drs. with experience with EB and try try try to let God do the hard work. As a parent I really have to force myself sometimes to let God make the big decisions..... Like I know more or care more about my babies.... good grief.

Thanks for sharing, he is absolutely precious....

Still praying for Jonah, you and Matt and the wisdom of those caring for your sweet baby. Let them see him as the precious child of God her is and not just a diagnosis......

Anonymous said...

Jonah boy has to be the cutest baby in the world!!!! And smart to! ;)

Mindy said...

These pictures are beautiful!! I am so glad he is acting more like Jonah!!

Ronda said...

Jonah is so beautiful! Those blue eyes are gorgeous! Prayers continue for wisdom and patience for you, Matt and the doctors.

Mommy said...

He is such a beautiful baby. God has truly blessed you with a miracle.

Christina

Tara said...

Those pictures are great! I love the one of Jonah resting on Daddy's shoulder. He is such a beautiful baby! You are all still in our prayers each day.

Cindy said...

Patrice we are continuing to pray for all that is waying on you. All I know is that Jonah just keeps getting cuter and cuter!

Nicole said...

Praying for your wisdom as you face these big decisions. So glad to hear he is doing better... Please keep us updated so we'll know how to pray! Blessings from Indiana!

Anonymous said...

Dear Patrice and Matt, I will not panic on a day that you do not email since you have said that you may take a need to take a break from time to time. The pictures are so gorgeous. I don't know if I mentioned to you that I have a 5 month old grandson (Matt and Taylor's child) so I compare pictures. Jonah is so bright eyed and it won't be too long before he starts responding to your smiles with a big grin and then he will laugh when you laugh. Each day is more and more exciting. Amidst the worries, I hope that you have time to marvel at how wonderful he is and enjoy the fun. I continue to pray daily. Love, Barbara

Baby Bird said...

...but of power, love and a sound mind! I grew up on this scripture...was a very fearful child and my mom taught me this scripture...and then Byrd was a fearful little girl when she was younger and I taught this scripture to her as well!
Praying that God's peace and overwhelming wisdom will be yours and Matt's as you make these important decisions!
God bless you both!
Love, Aimee Pence

Julie said...

I love all the pictures of Jonah...he is just adorable.

Praying for you...always.

Isaac said...

Glad to hear things are better today. I LOVE the new pics! Those blue eyes are amazing!

Hope said...

He is a gorgeous baby! I'm praying for wisdom and knowledge for you all. I know how scary a stridor can be. ((Hugs))
I hope he doesn't have upper airway issues like my baby. He has enough to fight already.

Anonymous said...

This is my first post but not my first prayer. Jonah has been in my prayers for a long time and I will not cease to pray for all of you. I love all the pictures and the are really a blessing. I saw that you all went out to visit with Gabe. Could Jonal be suffering from a case of pollen? The pollen is really bad right now. Love,Prayers and Blessings

Jennifer said...

Sweet pictures. Still sending prayers to you all.

Joanne said...

He is too beautiful for words! So precious. Will continue to pray for wisdom and for his healing (and peace of mind and rest for Mommy).

Beth said...

I have read our blog from beginning to current over the past few days... you are such a strong family and what a beautiful little guy you have!

I hope Jonah continues to improve and becomes stronger everyday!

Stacey said...

Thank you for sharing your little man with all of us. Those pictures are the best, he is adorable. He has beautiful eyes that sprakle!
We're continuing to pray for your decisions.
Take Care,
<><

Cynthia said...

He is so beautiful! I just melt when I see his precious little face! Thinking of you guys often, even though I don't know you, I feel like I do! lol!

Kirsten: said...

Love those baby blues!!! He looks GREAT!!! Hoping you figure out the best decisions for your sweet lil boy soon!!!

Anonymous said...

The fear of the Lord is the beginning of wisdome.
He's so beautiful! Love those baby blues!
Daisy

Kalley said...

He is such a cutie and what beautiful blue eyes! I just want you to know that First Presbyterian Church in Amarillo is praying for you through multiple bible studies and our Elders. I think about you often. Parenting is tough stuff and you are doing an AWESOME job!! I have a little girl and boy, and I hate it when people tell me to trust my instincts, because my first instinct is to panic:) I just faithfully pray for God's guidance and my ability to hear Him. I pray that for you too and just that you will enjoy every minute with him (even the tough, no fun minutes) because our little ones are so precious at each and every stage of life.

Hannah Grace said...

I love the pictures he is sooo cute he is most definitly a champion he is such a fighter. My Family and i are all praying for yall... Love ya

Kelsey said...

Those pictures are so precious of Jonah!

dg darling said...

Praying for you...He is so incredibly cute. I know how hard it is to trust your instincts. Especially about your child's health. I always second guess myself! Hang in there...I am praying for Jonah's health and that you will find the answers you seek and extremely clear inspiration from our Father in Heaven!

Anonymous said...

Thanks for the pictures. The are just so sweet. I will pray that you make the right decisions. God is the only way to go.

Anne

Tara said...

Those blue eyes are so cute! I'd say he is going to be a heartbreaker. Praying for those decisions. Glad he's doing better. Your on my heart!

Hugs from Iowa,
Tara

RLR said...

I usually try to read the posts before commenting, and I am sure all of them say something about how absolutely beautiful Jonah is, but I'm going to go ahead and say it again. He is just precious!
Sometimes those Mommy instincts try to fool you, Patrice. My son was hospitalized at 3.5 weeks old. He had only one issue that we were dealing with, so I only imagine how you may be questioning your choices. It's ok to want to bury your head in the sand - God will still find you :)
Praying for you, for Matt, and that precious little boy!

rindie09 said...

I found your blog through MckMamma's site. I can't even imagine what you are going through and facing, but I am praying for you and your family daily. I know our God is mighty and faithful. The pictures of Jonah touched my heart today...he is so handsome and precious! Those blue eyes just melted my heart. God bless!

Lindzerelli said...

I found your blog through MckMama's. Your son is absolutely beautiful! Such a cute little snuggle bug! Your story melts my hear and I greatly admire you,your husband and the faith you've shown.

Anthony said...

He is SO PRECIOUS!!!!!

Patti said...

Love the pictures, what a sweetheart. We are praying that God directs you to the best care for this sweet little angel. Lord, make the right decisions obvious!!

Leslie Baker said...

Beautiful little Jonah...those eyes! The picture of him and Matt is so loving! You are AWESOME parents! And you do have the right instinct...you have to protect your sweet boy. Vent to us, vent to us, vent to us...because your concerns help brign answer from other EB moms who truly know this condition and know what type of care is best. Thank heaven for the internet...look at the advantages it has brought to you...great advice, prayers and more prayers!

MelH said...

Patrice and Matt,
You have created one of the most gorgeous people I have ever seen! He is downright beautiful!!! What joy it gives my heart to see such wonderful pictures of he and his daddy. So, glad to hear he is eating better. You will always remain in my prayers.

Much love
Mel

nancy said...

Well we all know Jonah is and has been quite the manipulator from the beginning! He loves to keep mommy and daddy on their toes! Boy, he is adorable! He looks so healthy and bright eyed! In one of the pics he even looks like he is about to smile! I love it when you post pictures and have a good story to go along with it! It makes me want to get up and do a dance or just gives me a second wind if I am feeling down! You will come up with the answer on what to do about scoping or not? Maybe since he is doing so well now and eating better, I might would want to wait?
I am glad you are letting us know what is going on and thank you for the AMAZING pictures of that little miracle!
Love and prayers daily,
Nancy:)

K said...

What a beautiful baby boy. His eyes are gorgeous. I've been told many times to follow my instinct as a mother - but I regularly second guess myself. At least we can be sure that if we make a mistake, God will still turn it out for good.

Libby said...

Beautiful, beautiful baby boy. I'm glad he is doing better and will continue to pray.

Michelle in Va said...

He is so cute!!! You "sound" much more at ease. I know it is easier said than done, but just enjoy each day with your sweet baby. I know you have heard from other eb moms about their experiences but each and every child is so different and what happens to one child is different for another. The drs are drs for a reason and they do know what they are doing and talking about. Trust in them. Jonah will pick up when you are so stressed and that stresses him. I know it is hard not to worry, but again, just take it a day at a time and enjoy every minute!!! You and that sweet angel so deserve it. You have the Lord and a very special guardian angel on your side. Continuing to pray each and every day!!! God is so good!!!

Our family page said...

Honey, with a precious angel like that looking up at you, I can't imagine you ever wanting to put your head in the ground! I am praying, behind is still big, but I have plenty to pray off! ;o) So glad to hear your happy voice back in your post! Love, Missy in Mexico

Jill said...

What a cutie! Thanks for posting more pics - I love to see how he's growing and changing.I cannot imagine how difficult it must be trying to distinguish between general "baby stuff" that you might see with any infant and what may be a complication from EB. I will definitely pray for discernment and wisdom for both you and Matt, and continued healing for the little man!

Jenny said...

What a BEAUTIFUL BABY BOY!!! He looks wonderful! I am praying for you often here in Kansas:)

Anonymous said...

Yes he's a looker, but you know what else he is? He's happy. Look at him. He knows he's loved. You can tell that intentional, purposeful smiles are coming in the next week or so. Why? Because he's smiled at and feels the love in those smiles. What a God we serve!

Melissa said...

I am so happy to see pictures of your beautiful Jonah and to hear that he is eating well again. He looks fantastic. Still fasting (3 days/week) and praying for your precious boy's healing.

Erin said...

Oh he looks just wonderful! So glad to hear that he is eating well again. I will continue to pray for God's wisdom as you and your husband make decisions

Debbie,mother of two said...

Adorable pictures! Trust in the Lord that he will guide you, that is what I am praying that he will guide you in decisions that you make for Jonah. I am praying for you all and I am glad Jonah is eating better.I understand the risk you feel because I am an O.R. nurse. I will continue to pray for the breathing issues.

G & H said...

Can I Just say how incredibly gorgeous Jonah is!!!! OMG Its crazy!!!! Praying for you guys like crazy!

Anonymous said...

I am in LOVE with the fourth picture down! Those are some seriously gorgeous baby blues...his eyes are incredible! What a sweet picture. I'm very glad to read that he is feeling better!

mommieof2 said...

Beautiful pictures!!!!

Anonymous said...

You undeniably have the cutest baby in the entire universe.
God Bless this sweet, sweet child.
I think about little Jonah every day and pray that you all will make it through this.

Girl Child said...

EYE HEART JONAH.. and Gabe too.

I check in with you daily to see how u r holding up. I hope all is well for you and ur family.

Maddie's Mommy said...

Awww those are the sweetest pictures of your little boy!.. He is beautiful with his big bright blue eyes.. he looks so happy and content!!

Stephanie said...

HOW HAPPY WAS I TO SEE THAT BEAUTIFUL BOY'S FACE???
I am so sorry you are going through the daily heaviness of this, Patrice.
Praying-
Stephanie

Anonymous said...

We love the new photos of Jonah! He is so alert and his eyes are beautiful. My sons state that he looks very, very "better"---Keep up the good work, we are praying for him over and over again to continue eating and getting stronger! Thinking of you everyday and praying! Robin @ TR and the gang!

SavedbyGrace said...

Jonah is so handsome with those big, beautiful blue eyes. The presents from the Easter bunny are precious especially the yellow duck. I am happy to hear the he has an appetite and gaining strength. Hopefully he'll be strong enough to return home soon. Your family is in my thoughts and prayers. May God bless you. Christina

Anonymous said...

Someday you will look back at this time in your life and understand why you have some weak moments. You will have this "Why did I feel so guilty when I struggled emotionally" feeling when you remember these extremely difficult stressful times. Give yourself a HUGE break. Go easy on yourself. Don't feel bad if you have moments or days or weeks when you are not sure you can go on. No one in your situation could do it better than you do. Jonah is so blessed to have you for his Mom and Dad. Remember you are doing the best you can in very very difficult and stressful circumstances. I cannot think of too many paths in life that would be more difficult than the one you are on. You are walking it with courage, dignity and grace even with the weak moments.

Tabatha said...

Such precious pictures!!

Amber said...

He is so beautiful!

Michele said...

I know I've said this before, but Jonah is just SO CUTE!!!

Nadine said...

ah....he looks so good!!!
Could it be allergies causing him these breathing difficulties?
We had to take out all the carpets out of the house...and voila..our boys could finally not end up in the hospital in huge respiratory distress...
Now I know EB and asthma are not even in the same category...but hey...you could ask if allergies could be making things a little harder for the little guy...

Never hurts to ask the docs right?!
After all....if he does better in the hospital...then there has to be something different there then at home...

It sure changed our lives to take the carpets out...

God Bless

Nadine

Robin said...

Hang in there, Patrice. We are all fighting with you on Jonah's behalf. I'll be asking God specifically that He give you and Matt wisdom beyond your years and experience to know what's best for your BEAUITFUL baby boy.

Love,
Robin in Dallas

Melissa said...

He is just a cutie. He is very bright eye's and is very alert. Take every day at a time. And enjoy every minute.

Anonymous said...

He is the most beautiful baby! Praying for your entire family!!

Stacie
Blacksburg, VA

Jenn said...

What a stunning baby! Keep up the good work, you guys are doing an AMAZING job!

Strength.

Susan said...
This comment has been removed by the author.
Susan said...

He looks just like you, Patrice! I know he just melts your heart! What a sweet baby boy! :)

Lavonne said...

I have loved every single picture of Jonah where his eyes are open. You have a beautiful blue-eyed baby boy.

Jenifer Parris said...

Oh my goodness Patrice! He gets more beautiful each time I see pictures. I have that quote in my little girl's bedroom...the one about stealing a kiss from a sleeping child...that it's the only thing worth stealing...steal some extra kisses for those of us out here in internet land that would love to get one of that sweet baby boy. I am praying for you. I know with God's leading you'll make the best choices for Jonah.

autadv said...

The strength and faith you show in your posts is so humbling! I stumbled upon your blog the other day and I've sat here for two days reading...you are amazing, Patrice! I have a son with special needs and I become consumed sometimes with his care and his future...but I look at Jonah and I am humbled to realize that Im so self centered. At any rate, you are an amazing encouragement to me and my husband. Thank you for so honestly and bravely sharing your feelings and requests. You are in my prayers and I know that God just has an amazing plan for your family. Jeremiah 29:11.

Julia said...

ADORABLE!!! What a cutie! Praying for you all.

Toni said...

Jonah is such a beautiful baby. His little face is gorgeous. I believe by the grace of God that this little boy's complications will all be taken away as he grows up. You are a wonderful Mom. He is so lucky to have you and your husband as his parents. Keep up the faith. You're doing great.

Autumn said...

What a beautiful baby! I continue to pray for complete healing.
Autumn from NC

Lizard said...

bandages, blisters and all-that is just a cute baby!!

Mandy Mae said...

He is really beautiful. His face is like a little angel. I haven't followed much, but wanted to tell you that.