Sweet Dreams Indeed!What a very nice way to end my evening on the internet!
Looks like the little guy is healing up some (or at least showing a little more skin...what a cutie!). So glad that you are getting such great support from the EB community. I know those practical tips are making a huge difference in the amount of control and influence you are able to have in working with his doctors toward the best care possible. And it was so good also to see that Shaina was able to meet him in person!! Love you guys!
Night-night, Buddy! We'll be rocking in the glider soon.Much Love, Aunt Amy
I am sorry I have not written sooner. We have been praying continually since Friday as well as following all the updates here and on the facebook group. My Mom said she has been able to see you and I told her to pass on some hugs from the Florida crew. We love you all very much. What a cute little boy Jonah is.we love you,Daniel, Cristina, and Ben
He is so cute!
Heavenly Father, thank You for keeping your arms around precious Jonah. Thank you Abba Father for the miracles you are working even now.We cry before You with hearts full because we know without a doubt that You are God and we love You.Please give rest to his precious parents as you work Your miracles Abba. May You be glorified in and through Jonah's life in Jesus Name. Amen.***Goodnight sweet Jonah. Rest as the Holy Spirit ministers health and healing to your body. You are dearly loved by the LORD, your parents and all of us. Nighty Night..
What a gift God has given you in your sweet Jonah...
awww...precious Jonah...sleep well (and Mommy & Daddy too)!
That is the most beautiful picture :) I love how cute he looks. i hope mommy and daddy have some sweet dreams too.
night night squishy.
Sweet dreams Jonah. Your in my thoughts and prayers. Stay strong little man you can beat this.~Darlene
Dear Matt and Patrice, Thanks to angel intervention, I have found Jonah's story. Our baby was diagnosed with spinal muscular atrophy (SMA) at Brenner Children's Hospital in 1997. My family lives in Jefferson, NC, and my blogging partner (a fellow SMA mom) and her family live in Cary. We have just added an entry about your beautiful Jonah and included his picture.Lots of hugs and prayers for all of you -Helen Baldwin ('Lucy')
he is so handsome! praying for you...
oh, he is just beautiful. goodnight little man.
What a beautiful baby boy!!! I am praying for him and adding him to my prayer chain. Thankfully there is no problem too big for God and I am praying His grace, mercy, and healing will be all over Jonah's precious little body.I love that you have started your profile with the words, "I am a child of God.." Those words are words I dwelled on when the doctors did not know if my baby was going to survive or not (she was severely injured in a horrible car accident). You are a child of God...as much as you love Jonah, God loves YOU more and He loves Jonah more! Think about how much you already love Jonah in the short time you have already shared with him, and think about how you will do anything you possibly can to take care of him and make him whole....now find joy as you realize God has those same feelings for you and for your precious little one....You can trust God with Jonah's life and with your heart because you are His beloved child!When I read about your hallucinations from the sleeping pills and how you felt satan was all in the midst of it, I kept thinking, "That's how mean satan is...he kicks you when you are down and he kicks you where it hurts." That's why I take so much comfort in Romans 16:20 - The God of peace will soon crush Satan under your feet....I know how hard it is to talk to God right now....your mind is in a fog and you are probably in shock over all that has happened in the last few days. Just know, God is there waiting for you to call out His name. It's okay if you can't find the words, just call out His name. With just the mention of His name....just a touch of the hem of His garment.......with faith....healing takes place. God knows your heart, even when you can't find the words to tell Him what you need Him to hear.From my experience, when your child is fighting for life, you will go through many emotions, fear, happiness over improvements, sadness over setbacks, and maybe even anger at God. Just know these are all normal emotions and it is okay to be angry at God as long as you talk to Him about your angry feelngs and ask Him to give you peace....He will do it!And I know it's hard when your child is in ICU to even find a quiet, private place to talk to God.....I will confess that there were many minutes spent in the ICU restroom at Children's Hospital in Dallas when my daughter was there. I walked through the doors with a smile and, once the door was closed and the lock was in place, the tears would flow and God and I would have some of the most intimate, heartfelt conversations I have ever had with Him in my life. You will be surprised at how close our Father is when you are in an ICU restroom!I don't even know you but I wish I could just wrap my arms around you and pray with you!!! I know first hand the fear of uncertainty you are feeling as you are fighting for your child's life but I also know even better the healing powers of an awesome God!!! May He comfort you and give you peace and bring healing to your precious baby boy.Consider yourself hugged and prayed for by yet another someone you only know through Christ!!
Sweet Dreams Little Jonah!!!
Sweet dreams to you, too, Jonah! We're all praying for you! Patrice and Matt - thank you for sharing your story with us - the love that surrounds Jonah and his family is truly an inspiration.
So adorable. Praying for you and your family.
and that pictures....are the things dreams are made of!
Good morning, Matt, Patrice, and Jonah! I hope that all is going okay this morning. I only just found out what was going on yesterday, and got to read some of your blog this morning. I am so sorry that you guys are having to go through this, but as they say, God has a plan...whether we understand what it is at this point or not. Now that I know about your blog, I am going to be following it closely to keep an eye on Mr. Jonah...he is such a beautiful little boy. In one of the posts you had mentioned that it was okay to give advice/suggestions/etc. I don't have any experience with EB, but I do have tons of experience with the "rare & life-threatening conditions in a newborn" thing. My oldest son (now 16) was 2 in a million when he was born and wasn't really expected to live more than a couple of years. He's now 16, and while he's dealing with a few things, he is strong and in so many ways a normal teenager. Now, that said, the two best pieces of advice I can offer are these: 1) ALWAYS TRUST YOUR INSTINCTS!!!! I can't stress that one enough. You are mommy and daddy...if you think something is wrong, or just not quite right, bring it up...push for an answer. If I hadn't done that, my son would not have made it past 3 weeks old. God gave you instint for a reason, so make good use of it. If the doctors get annoyed, so be it...if it keeps your child alive, it will have been worth it twenty-fold! 2) As he grows older, treat him as 'normal' as possible. Yes, he will have medical issues, and yes, there will be limitations. But other than that, teach him that he is just like everyone else on the inside and that he is strong. Bryson is the strongest person I have ever met in my life, and that's because we taught him that he was strong. He never gives up, because we never gave up. Okay, now that I've written a novel (sorry about that), I'm going to work. I'll check back in later today and hope to see good news...hang in there, guys, and God bless all of you....
Good Morning! I just started following you recently and wanted to introduce myself. I am an RN and work on mother/baby at Forsyth. It is always a blessing to find someone on a blog that is close to home. I am praying for you and Jonah and hope he gets to go home with you soon! I know they are taking wonderful care of him at Brenner's, they have some wonderful nurses there. I love looking at your sweet baby boy, he is precious! Take care~
oh what a beautiful picture! How sweet!Just a question - is that tape on his chest/neck? I don't want to be a downer about this perfect picture, but I really hope that is NOT tape or any kind of tape. NEVER, NEVER, NEVER let them put ANY kind of tape or adhesive on him - EVER!! NO, not even paper tape! I really hope that you and daddy got some sleep and that Jonah had a fantastic night!God Bless you All!Janel
sweet dreams, little man! we prayed for you again tonight at youth group, and i sent all of the kids over to the prayer group on facebook. it is amazing to see how God is working through Jonah and sharing his story with so many. i miss being there and send you the biggest hugs.
Patrice and Matt- Tara passed along your blog and a cry for prayers. I'm praying for you guys and I know God has His had in this situation! Your little man is too cute!I'm praying-Becky Gibbs
Jonah is so beautiful - you all are in my prayers. God Bless youTammy
I think you have one of the most beautiful baby boys I've ever seen, Patrice. I'm super encouraged that his torso didn't need to be wrapped! I sent out an email asking people I knew to pray for you guys, and I got a response that I wanted to pass along. She didn't know how to comment, so I'm doing it for her. Not sure if it'll be helpful or not, but here it is:I just read all the information about precious baby Jonah. He and his family are in my prayers and I am busy passing this info on for others to keep him prayed up.I did know where to make any comment but I will share with you that I would suggest they call Mannatech in Copel Texas, tell them the situation and see if they would DONATE (as they do love to help children in need) Ambrotose. That isn't for the pain but it was FDA approved a couple of years ago for Stem Cell Regeneration. It is what I took for my RSD (HORRIBLE NERVE DAMAGE PAIN) way back when it wasn't FDA approved and I didn't care that it wasn't. Mannatech is a Christian Food Supplement company. There are hospitals in different parts of our Country that know about it and have used it. It's a powder that could be put in tiny amounts into his tiny amount of formula. FOOD for thought. When I started taking it I had already had 35 gangleon blocks, radio frequency burns, two years of morphine and two years of methadone. I can only begin to imagine the HORRIBLE pain that Precious Jonah is experiencing and doesn't even have any idea whats going on.My heart ACHES for his wonderful Mom and Dad and I soooo admire their Faith and strength. I'll continue to check on their website and pray that God will bless Jonah with Good health and the day will come they will look back on all of this and say, Wow, God is AWESOME and Jonah you are very strong.
What a beautiful picture of baby Jonah. Praying that he sees the ENT doctor today, and Jonah is able to eat. His belly looks great. Keep fighting, Jonah.GailAnnapolis, MD
Matt & Patrice:I have reframed so far from commenting here although I have read every post and every comment. I know you think of me as hard like the rock of Gibraltar because that’s how our family was raised. Just take one look at Debbie with her jaw locked in place against whatever is coming next. She and I, although not very close in everyday life, have been through these painful life experiences too many times before. Know one thing, its not ever easy being the shoulder others are leaning on. I have often stated that my greatest fear in life is something happening to one of my children or grandchildren. Now I am living through it for the second time through you. Unknown to you I was devastated the first time and words can’t express the feelings rising up inside of me this time. The older I get the more emotional I become for someone who has seldom cried in life. Now I can’t seem to stop crying as we all deal with this. Most of the tears aren’t what you think. What touches me is the active caring involvement of others, even total strangers especially the EB mothers and nurses. I completely lost it this morning as I read the comment from Tiffany with Charlie, my grandchild, praying for your child. Good luck with your interview today I hope it goes well and everything works out for the best not only for you and Jonah but for the thousands of others, complete strangers, whose lives have and will be touched by what is transpiring in the NICU as the impact of Jonah’s story expands and literally reaches around the world. We never know what life will deal us it is only for us to make the best of the life we are dealt. Love, Uncle Chris
Dear Patrice, Matt, and Jonah:You are still in my prayers. I know there are lots of us praying for Jonah and falling in love with him too. What a sweet and precious baby, and I too am happy to see a sweet little belly!I will keep praying, our God is so good!
Sweet baby, sleep tight baby Jonah. My name is Kelly and I stumbled upon your blog through "Kelly's Korner" blog (2 different Kellys!)I just want you to know that I am praying and thinking about your family daily. Although our children do not have the same conditions; I understand the raw emotions of having a child with special medical needs. We too are believers in our Mighty God and we know first hand that God is still in the business of performing miracles. I would like to place Jonah on our caringbridge site so many can pray for your little boy. Please feel free to check out our caringbridge site at www.caringbridge.org/visit/owencarrWe will be praying the gates of heaven down for your sweet family. Blessings from Indiana,Kelly
My heart just hurts for you. He is so precious. The glory of God evident through a gorgeous baby boy.Praying!!!!! Put your icon on my blog to recruit prayer warriors.Hang on...He hears you and LOVES you."And so we KNOW and RELY on the love God has for us."1 Jn 4
What a sweet and precious boy!!! I will be praying my heart out for you guys!! I am praying that God does a miracle! Praying in Indiana!
Jonah is truly precious! A gift from God, indeed! I am praying for him & will continue to do so. Praying for God's peace to rest on your family.
Awww what a cutie pie! Love the picture! So sound asleep! He reminds me so much of when my daughter was in the NICU! Unbelievable…I noticed that you put a piece of mepitel on his neck. Good idea to keep the skin from rubbing too much. Love that he has more “EB friendly” wrappings on! YEAAAHHH for mommy, daddy and medical staff!!! =)…Hope he’s starting to eat a bit more…and that you are getting some rest. I can relate to the hallucinations w/the medication. I was taking percocets for the pain connected to my c-section but I had to stop! I was not sleeping well - very live vivid nightmares and passing out every time I would bend over to pick up items or just to go to the bathroom. I found myself passing out – not remembering a single thing – and waking up like an upside turtle in my bathtub! No fun!Hope everything continues to go upward. Also, don’t get discouraged if a little something happens to his belly by mistake…I unwrapped Bianca’s torso periodically and then ultimately by the time she was 9 months old I did not have to wrap her torso ever again (say a prayer/knock on wood!!). She does well…gets her little nick/cuts/blisters here and there but they heal right away!!!All my thoughts/prayers~Sally Contreras
Praying for healing of your precious little one.Blessings.
What a precious baby boy you have, and what a fighter! It is great to see his belly, so cute! We are praying hard right down the road in High Point and are so excited to read about his daily improvements. I hope you saw that ENT first thing this morning and that you have some answers about the feeding issues. We love you all and Mikey, Ali and Coleman are so excited to have a new baby cousin to add to the bunch. I can't wait until we can take his picture with all the others!Love, Heather and Adam
So sweet...just precious!
What a sweet face to wake up to this morning. I can't get over how beautiful he is. God's handiwork is evident in Jonah!
oh sally! thank you so much for clearing that up for me!! I have never used the Mepitel, so I didn't know what it looked like! FREAKED ME OUT!! I have been just baking and praying all day!! I cannot wait for another update! I really pray that the whole family had a great night and are having a great day together!!
He looks so sweet and peaceful.
God is so super good! He looks lovely. We are still praying... but it looks, at least to me, like miracles are happening!Love and prayers from Indiana,CeCe Garrett
How sweet! We're praying for you guys! Hang in there!
He's so beautiful! We are praying you and Jonah! May God bless you.
Would it be possible for you to post an address for Jonah at the hospital?
I know that all of us EB moms have given you way more information that you can possibly process, and I am so glad that you have been in contact with DebRA. They are extremely helpful. I just wanted to throw out the offer that I live within driving distance of you all and am more than happy to come visit one weekend and help in any way I can. My email address is katiegalex [at] yahoo [dot] com. We are praying for sweet Jonah.Katie
Such a sweet picture! I posted and linked up to you guys today - you are all in my prayers!
I am anxiously awaiting an update on the most beautiful baby in the world!!!Praying so much.Stephanie from Tennessee
What a sweetie pie, I am praying. Clarice
He's perfect! Prayers are with you and your family!
He is a precious gift from God. We're saying a prayer for your son.
Praying for your sweet Jonah. May God bring complete healing to his body. He is beautiful!!
Patrice- I work with your mom and know what an amazing person you must be as well. Jonah is an amazing and beautiful baby! I have been reading your blogs several times a day and think that you are a true inspiration. Your strength is incredible! I pray for strength and healing for Jonah. Keep fighting little buddy! =Lindsay
My dear Patrice and Matt, Sweet Jonah is now the background on my computer. A constant reminder of how incredible God is to bring your beautiful son into this world to show thousands how a tiny mustard has the strength and determination to grow. God IS with you. All my love to you both, Debbie, Gerry.
We are praying for Little Jonah. He is beautiful, I posted your button on my blog. I know the plans, I have for you,"declares the Lord", plans to prosper you not to harm you, plans to give you hope and a future. Jeremiah 29:11
Praying for your little guy and for all of you. Jonah is very beautiful and so very loved. I can hear it in your words how much you love him! Carol
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