Hi friends.
Another great day with Jonah! It's as if he got the memo about the Non-Herlitz too! We've all had quite the spirit boost. His blood culture remains negative, although the one from his biopsy spot is growing a couple different "organisms." They are typical skin bacteria, though, so it's not systemic, and they don't seem concerned. I think they have him on the Keflex more as a precaution, as he doesn't seem to have an infection at this point. Praise God!!! His lymph nodes continue to be swollen, but it's probably just because his body naturally has lots and lots of drainage.
I have some cute pictures from today but am way too exhausted to post them. Be on the look out for those tomorrow (you know, unless life happens... as it tends to do).
We've increased his Ativan dose in hopes that we will be able to begin weaning him off the morphine, so he can come home on Tylenol. Tonight we did not give Tylenol and Morphine together (as we had been... possibly the reason he kept spitting it up), but gave only Morphine and increased his Ativan dose a little. This seemed to work out great. He was very relaxed and only cried out when we began to bathe him (one limb at a time). But he's clean, people. And smelling like a baby!!! I know he'll be all greasy and smelling of Aquaphor and gauze again, but for a moment it was nice to kiss all over clean skin and take in the baby smell. Hopefully if this combo continues to work, we can slowly wean him off the morphine and be one step closer to home. In one way, I can't wait, and in one way, I'm scared to death, but I know God will be with us. If you had told me three weeks ago that I would have been able to do all I've done in the last 23 days, I would not have believed you. The strength and comfort He has provided have been amazing. I can do all things...
May you feel His strength, peace, and comfort as He carries you down whatever road you're on.
Isaiah 40:29-31
He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.
They will blister, and they will heal.
Saturday, March 21, 2009
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49 comments:
Rejoicing in the non-Herlitz news and the joyful sounds of a Jonah getting to meet his doggy at home. Although I know Jonah was a little disappointed with the Demon Deacons NCAA run, I'm sure he'll forgive them next year and cheer them on all the same.
Still praying over you guys every time you come to mind. May God's strength continue to be with all of you!
Woo hoo! Glad you had a great day...you were on our minds ALOT! I am going to sleep now since I have had my daily Jonah update. We continue to ask God to help him fight any infection, and to give you guys continued strength. We love you much and hope to talk soon.
Much Love and Prayer,
Leigh
Praise the Lord! Jonah has been in my prayers daily, I will continue to pray for your family.
Yay Jonah! Sounds like you had a great day, and so did your mommy and daddy! You are one day closer to sleeping in your own house. Praying for an even better Sunday!
Gail
Annapolis, MD
happy that you are that much closer to going home with the little guy. i cant seem to go to bed without checking in on how he is doing. still pray for him, and you and matt every chance i get. god night patrice and have sweet dreams of your healthy jonah coming home.
Patrice, I am celebrating with you! I was thinking about Zofran for his tummy before the pain meds if it is needed. It has worked wonders. Hopefully he won't need it, but just a possibility.
Yea! Such a great report to hear at the end of the day. Thanks for sharing all the good news. Love you!
Been waiting for your post and so glad the day was good. Sounds like everything is going well. Jonah is a fighter for sure, sounds like he has the spunk of his mother. God is good Patrice and answering all of our prayers. Stay strong prayer warriors so precious little Jonah, that we have all grown to love, can go home soon. Just pray for that extra strength Patrice and it will be given to you. God has been with you thus far and He will continue to lift you up and accept whatever challenge you have. Sleep well tonight. Prayers continuing without ceasing.
So thankful for a GOOD DAY!
I am so happy for your good day. I am so thankful for all progress Jonah makes towards going home. I continue to pray for you, Matt and Jonah daily and will always. Sending lots of love and prayers from my heart to each of yours.
I'm so encouraged to hear baby Jonah had another great day! May the great days keep on comin'!
The Maurer family is rejoicing right along with you!
Amen Patrice! God gave me that same verse yesterday as I was praying for you and Jonah! I am rejoicing with you for another good day! Looking forward to those new pictures...he is one beautiful boy!
You are simply amazing. I know it's Christ in you, the hope of glory, that is completing you in every way, and I'm grateful that you are giving Him all the glory. That's all that He wants, and I know His very perfect plan is being worked out in your life. Continue to press into Him and be conformed to His image. We continue to pray for Jonah and for your family. Thanks for keeping us all posted.
Daisy (Alabama)
Hooray! I am so happy that the "lumps" were not an infection and that you all had a great day! Praying for another even better day today! All our Love!
I thought of you as I read the following devotional dated today (March 22). The website is:
http://www.crosswalk.com/devotionals/desert/
It's a good one to read as you are going through tough things. It's almost always a huge source of encouragement. I know you don't have a lot of time, but if you do, this is absolutely beautiful.
Daisy
I couldn't stand not knowing what was happening while I was on vacation! I even called a friend to read your latest posts to me over the phone. We prayed for Jonah so much. I am thrilled to read and catch up on everything.
The first thing I did when I got home was run to my computer and come straight here.
Praising God with you.
Stephanie in TN
Hi, I have been following Jonah's life on your blog and feel like I know him. It sounds strange but it's true. I am so amazed at how as parents are doing. You have so much to do to take care of him. But we just do what we have to do to take care of our kids. Moms are just great people. lol
My son was born with cleft lip and palate and I was terrified to take him home. He was so hard to feed and I was afraid of him choking. But of course I learned all the tricks and got better and better at taking care of him. Then at 4 months he had his first surgery and I had to learn new things again. More scary times. It stinks trying to figure out all the pain meds.
Anyway I am rambling and I just wanted to say I can see the improvement in Jonah and I am so happy he is doing well and with the diagnosis from Vandy. I live in TN. Vanderbilt is an amazing hospital. Good luck with everything and I will continue to pray for your family.
Holly
YAY Jonah, Patrice, & Matt! I'm so glad to hear that things went better yesterday. May God grant you continuously better and better days and a lifetime of love and togetherness...
That's so great that you all had a good day! I pray for many, many more!
On the day we celebrate our Lord, we will rejoice for all that he has given and not given Jonah (ie. Herlitz EB, systemic infection, etc.). What wonderful news! Thanks, Patrice! Dawn M.
This is the day that Lord has made. I will rejoice and be glad in it! What a mighty God we serve and what an awesome day to hold dear to your heart! You sound better and better as well and I'm thanking God for His continued strength and power flowing through you. You're such a great mommy! Love the updates and am always praying!
Love that clean baby smell, but remember with any little one, the smell of aquaphor is always better than the stinky diaper. If you need a laugh, check out my latest blog posting about the adventures of my 16 month old. http://mccormackspot.blogspot.com/2009/03/whose-clothes-are-you-wearing.html
Continuing to pray for all of you.
AMEN!!!!!!!
I'm so glad that Jonah doesn't have an infection. Patrice - may God continue to renew you daily!!!!
That is wonderful news. Our daughter Daisy falls into the same unsure area of Juntional as your son. For pain management we use tylenol and oxycodone.Daisy stop breathing on Morphine. We could not get her enough pain management with just tylenol. Diapers we use pamper swaddlers I cut the inside elastic out,the tabs off and leave the outside elastic,I use micofleece fabric to make frames to put over the the out side edges of the diaper, We tried cloth but they cause too much break down for us. I found for Daisy Vasaline gauze kept her skin to moist and it would slide off more easy. We use mepilex transfer on her arms and legs when she was little then slightly lubed the cling with aquaphor.Then put stocking net on her legs and tubifast over her arms it helped keep the bandage on and if you wash tubifast first it gets very soft and helps prevent them damaging there face when they rub.I also put tubifast just on her thighs over the stocking net so when she stools you have a layer you can change instead of have to redress the legs. We use clothes inside out so the seams don't rub. Our daughter is currently in Childrens hospital of Philly you can call my cell if you need to talk or have any questions. 908-244-8433
I will pray that you all get to go home soon.
Sincerely ,Dana Sherman
I was so scared to bring Alex home from the NICU, no monitors, but it was also wonderful! I cant wait to read about your home coming with your sweet boy.
p.s you are right before your boy was here you never could have imagined you could do allthat you are doing, and you will continue to amaze yourself!
Praise God. Sweet Jonah. You are truly blessed. Praise God for no infection, lessening pain and new options for home management, non Herlitz form of EB and for two amazing parents. I praise God for allowing me to follow your journey and to pray over you and your family. It's truly an honor to live in a Christ community among you.
So glad Jonah had a good day! He's such a cutie!! I know you will be fine at home, it's always scary bring home a child with health problems, but you learn one day at a time, and soon it becomes a routine and part of your day. It does get easier, hang in there.
Millie and Colin-HLHS
Praise God!!! We serve such an amazing God who can heal all things. It was such great news to hear no infection for sweet Jonah. Continuing to pray for sweet Jonah and you,Matt, and your families. It is amazing how strong you can become when you lean on the Lord Almighty!!
Rejoice in the Lord, again I say rejoice. We are praising God with you. Exciting news!
PRAISE THE LORD!!! Hope that you all have another great day today!
Love and prayers!
Aimee P
good to hear the great news!!
my daughter vomits up tylenol (she's nine and does not have the skin condition jonah has). we give her motrin instead and she does fine with that.
I wanted to let you know. This morning I was watching the news. They had a report on a children's wheel chair basketball team. They highlighted a little boy who has a skin condition that makes blisters form all over his body. I thought about Jonah, I am assuming this is the same/similar condition. The little boy was happy and enjoying the basketball league. So just a little hope!
Praising God with you every day. Each "little" step is a great victory for Jonah and a huge testimony for our Lord!!
Prayer and praises going up for you all in Indiana.
FREE diapers for Jonah?
Go to MckMama's blog cloth diaper giveaway and check out what is happening in the most recent comments about giving the diapers to Jonah. Don't miss the mothers who have already asked for themselves returning to retract their request and recommend the diapers go to Jonah. Check it out and add your comment at:
http://www.mycharmingkids.net/2009/03/cloth-diapering-101-giveaway.html
How wonderful to hear that you ALL had a good day. We are still praying for more good days and the time when you can take him home. God has a way of helping us all through our scary moments, and I KNOW with my whole heart, you will be a perfect caregiver for Jonah.
With love from Texas
I love your enthusiasm and honesty! I am so happy for you guys and I pray that days like this happen more and more and the bad ones just fade away.
Keep loving that little man!
I'm just lovin' all this good news!
Ah - Spring! Isn't it just the time for renewal and rejoicing!
Grannie in Florida
Still praying for you all in Louisiana.
Patrice,
It's been awhile since I wrote, but I wanted you to know that I'm still here...and still praying for Jonah. I am more than thrilled about the non-herlitz news!! You are doing so good my friend...keep it up. I pray the Lord continues to give you His strength...even in your weakest of times...
We're rooting for y'all.
Love,
Karen Safley
Patrice,
Savannah (2 yr) just came downstairs asking to see pictures of "my baby Jonah". That is how she refers to your precious boy & how she prays for him. She says "My baby Jonah at Gram Gram's hospital". Just wanted you to know that prayers are being lifted from all ages/vocabularies! We rejoice with your good news!
I love hearing when the days have been good! I'll keep praying since I know it's a roller coaster ride still, though.
I do have a questions: How long can he be on Tylenol before it begins to affect his liver? Also, a German study just showed that Tylenol prevents antioxidents so children on Tylenol tend to get asthma. Is ibuprophen an option, if you can rule out Reye's Syndrome? Then alternate between Tylenol and ibuprophen?
I just came to let you know I am still praying for Jonah, but then was so excited to see all the terrific news - praise God! He is SO SO CUTE!!! I have no EB experience or advice, but I HAVE weaned a baby off prolonged use of morphine before - if you need a shoulder to cry on there, you can email me through my profile. LOTS of continued prayers for you and that sweet baby!
I just found your site... we have a Jonah Alexander, too! Along with his twin brother Benjamin, he spent time in the NICU after his birth as well. We are hoping and praying your Jonah continues to improve!
Glad to hear that you all had a good day!!
I got tears in my eyes with the verse and your last comment. So true. So, so true.
God is more than all of this...but I'm still sorry that you have this pain in your lives. God is using you to show his love and power to so many...yet it is still so hard.
For some reason little Jonah's story has just grabbed my heart. I decided today I am going to collect butterflies for my shadow box and every one I get I will remember the children born with EB.
God is good! So happy to hear the good news. Jonah is beautiful. I want to kiss his sweet cheeks! Praying daily that God will take this from Jonah and all glory will be given to Him. God bless.
I'm so happy it's the non-Herlitz type! I looked up on this type just for a better understanding and stumbled upon an article that mentioned that an oral steroid has shown to help with it. I'm sure your docs already know that but just in case here's a link... http://www3.interscience.wiley.com/journal/117983851/abstract?CRETRY=1&SRETRY=0. I will continue to pray for more victories for little Jonah.
Look at that face, got his lips all pouched out..like he is telling you he is tired of being messed with. PRAISE GOD TO THE HIGHEST!!!!!!!you are taking that baby home on Monday, how awesome. Still praying, will keep praying for Jonah & Stellan. Wanda Wilkinson
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