Just wanted to let you know that I haven't fallen off the ends of the bloggy earth. Our laptop is in the shop, and getting five minutes to come upstairs and post on the desktop is just that - about five minutes.
So hopefully I'll get back to more frequent posts in a couple days when the computer is fixed. (But more than anything, I want it back for dressing changes... no DVD distraction is KILLING me, and isn't so fun for Baby Jonut either.)
Very productive day - took Jonah to the GI, to the pediatrician (for a questionable looking place on his finger... think it's okay), mowed the lawn (with my mom's help), and was just finishing up dressing change when Matt walked in the door. So Jonah has just fallen asleep for his afternoon nap (he only slept for an hour after lunch) now at 5:45pm. You know what this means, don't you? UP. ALL. NIGHT.
We're just gonna hunker down. It's gonna be a long one.
(Oh yeah, a couple of you have asked about his breathing. Still the stridor, but only when he sleeps. I mentioned it again today at the Pediatrician's office, and they still seemed unconcerned. His color is great, and besides being raspy (because of the acid reflux???), he breathes easy when he's awake. He's not retracting and doesn't seem to be struggling at all. But man, it scares the dickens out of me. I guess they just expect him to grow out of it, but I'm keeping a close eye (ear) on it for signs of change... Thanks for asking!)
Wednesday, July 29, 2009
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21 comments:
Always praying for your wonderful family! We love you guys!
Erin in VA
Thanks for the update! Praying that what the doctors said is with wisdom given from the Lord and that Jonah will grow out of it!
Praying Jonah doesn't nap long right now and then sleeps good tonight!
Thanks for the update! Praying!
Cxx
specific prayers for computer. maybe i should pray 4 mine instead if SCREAMING at it.
prayers always,
2shoes
I just thought you'd find interest in knowing that there is another christian family who had lost 2 babies at birth and now has their baby daughter, Hope who recently has been diagnosed with EB (link to their blog is below in case you are interested). I just thought it may be a nice place to go to for support. Still praying for Jonah!
http://www.babybolte.blogspot.com/
Happy to hear good reports from both docs..every time you say Jonut I immediately think about krispy kreme donuts..just like Jonah, sweet & awesome (Ha).
Thanks for the update about his stridor, I know that worries you, it would me too. I went to Boone last night (came home tonight) & going back tomorrow (my daughter is moving from student apartments to her own apt) & as I go through Winston I talk to Jonah (as if he can hear me, but God does)
Hope you can get the video up when your computer is working, I love some Jonah on video.
Praying for a good night of sleep.
Jonah is truly adorable. I'm so thankful for his life and thankful for y'all. He's blessed to have such wonderful parents.
I loved all the pictures. He's a sweetheart.
I'm continuing to keep Jonah in my prayers.
Glad the breathing thing seems to be ok at this point. Thanks for updating! Hope you're not up too late tonight and not up too many times! Praying for you all.
Hugs
My son had the breathing thing...tracheaomalacia, or soft trachea. They called him the happy wheezer. It was scary at times, esp when he got sick or choked. He grew out of it at about 3 yrs old. They said most preemies have it and had no idea why a full term baby had it. Just one of those things. Maybe this is what he has? Praying for you all in Texas!
My now 8yr old has Laryngomalacia (literally, "soft larynx"). She was a VERY noisy infant, but had no troubles breathing - ever. She was supposed to grow out of it, but I still hear it when she really gets to laughing.
Your mention of Jonah's stridor reminded me that I was going to post to you about it. My son, now 1 year old, has severe reflux. He has very frequent stridor and what I would call a rattling sound. He doesn't have trouble breathing, but the sound really disturbs me. The Pediatrician also said he'll grow out of it and that it's just from the spit-up and vomit getting into his respiratory system (or something like that). Jonah's sounds so much like Jule's! Hope he grows out of it quickly for you! Reflux can cause so many odd things! I would guess that is what you are hearing too and that it's unrelated to blisters. Praying so.
I was driving down to Lexington yesterday and I saw a Jonah maganet on a car and I said I read that blog.. and it reminded me to pray for you guys. They look great by the way!!
Patrice - you are just so funny! I get such a kick out of your posting!
Jonah is just the most precious little boy. He is getting some hair I see!
I have been keeping up w/your little family. It may help you to know that my now 20 yr old use to throw milk up like you would not believe - oh did it smell , we used soy they said it would help and it did I guess what really helped was when he could go on regular milk. Another thing my son's breathing was always loud at least till he was much much older and then still loud and raspy almost like he was going to stop at night but again when he got older he got better. We lost our first one in a late term miscarriage so the next two we watched like a hawk. Just thought might ease your mind
Hi! You don't know me but I found you through another blog that I read faithfully. You are doing a great job taking care of you little guy. I am looking up to you more and more lately. I am a foster Mom and we have a new little boy that came to live with us a week ago. He has an extreme case of eczema. It cover most of his 3 year old body. I've had to do a lot of bandaging in the last week too. He is getting better slowly. But I can see a time in the near future when I can stop. So I just want to give you a little encouragement to keep up the good work. I also wanted to mention that we have another little boy who is 3 and a half. We have had him since he was 4 months old. He had stridor until he was about 1 and a half. He just all of a sudden grew out of it. So maybe Jonah will too. I was very concerned about the way it sounded when he was sleeping at first, but slowly I got used to it. But I remember other peoples reaction to it and it would remind me that his breathing wasn't normal. So hopefully one day soon you won't even realize he's out grown it. God Bless you! Susanna Krahn
Hi! You don't know me but I found you through another blog that I read faithfully. You are doing a great job taking care of you little guy. I am looking up to you more and more lately. I am a foster Mom and we have a new little boy that came to live with us a week ago. He has an extreme case of eczema. It cover most of his 3 year old body. I've had to do a lot of bandaging in the last week too. He is getting better slowly. But I can see a time in the near future when I can stop. So I just want to give you a little encouragement to keep up the good work. I also wanted to mention that we have another little boy who is 3 and a half. We have had him since he was 4 months old. He had stridor until he was about 1 and a half. He just all of a sudden grew out of it. So maybe Jonah will too. I was very concerned about the way it sounded when he was sleeping at first, but slowly I got used to it. But I remember other peoples reaction to it and it would remind me that his breathing wasn't normal. So hopefully one day soon you won't even realize he's out grown it. God Bless you! Susanna Krahn
Hi Patrice -
Glad Jonah's breathing isn't anything too out of the ordinary - will pray that it (and the reflux) settles down completely. Hope he just took a little catnap this afternoon!
Continuing to pray for all of you!
Love,
Laura
Just an FYI my son has had acid reflux since day 1 and he is now 18 months and STILL to this day he is a little raspy. He is still on Prevacid and whenever he gets an type of infection we add Mylanta in the mix and it helps tremendously. My point it if he has reflux chances are the raspiness and stridor are just associated with that. I was worried forever that my son had asthma but turns out nope just awful reflux!
http://www.youtube.com/watch?v=Sv-Kof3wNKM
Is this the song that you are referring to?
I have been following your blog for a while, dont think I have ever left you a message. He is such a beautiful baby and a tribute to his loving parents.
Katie :o)
My comments are few - but my prayers are many! Donna in Clemmons
Jonah is just such a dolly!
My son was a noisy breather as well. It was either tracheaomalacia or laryngomalacia - I forget which they finally decided he had. Either way, it used to scare me half to death. He would grunt and snort and just plain sound like he couldn't breathe. His sats were always fine though. So I would say try not to worry about that at least - it sounds scary, but they do grow out of it!
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