Happy Halloween!
Love,
Jonah
Saturday, October 31, 2009
Thursday, October 29, 2009
yet another miracle
Wow! What a day! When the nurse took Jonah's weight, and we saw what it was, I just started crying. Jonah was looking at me like I was a crazy person. Isn't it funny how we, as parents, tend to FREAK OUT (with reason... most of the time anyway), but all the while our kids are like, "It's cool. Whatever." So nonchalant. He never even acknowledged the fact that he was pushing me (not really him but the circumstances) to the edge of a mental breakdown. Sweet, oblivious, 18 lb 3 oz child. How I love thee!
And just to clear things up for those of you who have just begun reading or don't know much about EB - You may think I'm crazy for talking g-tube for a (previously) 17 lb 11 oz eight-month-old. And if he were a "normal" baby, we would be. But the problem is not how much he weighs. The problem is with his growth curve. Any time he starts falling off his growth curve (and a month without gaining any weight was doing that), we have issues. There's a lot to consider with EB, but nutrition is #2 (I consider #1 to be infection). Like I said in an earlier post, once EB kids get behind, it's a real struggle getting them caught up. They need MANY more calories than "healthy" kids, and their bodies require lots of EXTRA to heal the blisters they do have and to regenerate new skin. Healing takes a lot out of you.
So... I hope that explains the urgency of the last couple weeks. And there is still a great chance that we are not out of the woods. I don't think this is the last time we'll be dealing with this (although God can do anything, so we wait in hopeful expectation), as there is so much to consider. G-tubes are good for so many reasons for EB kids - adequate nutrition, a happy alternative to shoving lots of meds and vitamins down your kid's throat, and one I've thought about a lot: a way to nourish them if they fall down and hit their lips or mouth. Can you imagine? Big blisters, days of healing, and the inability to eat. I can see why many EB parents get them. Actually, the idea of the g-tube itself sounds pretty good... it's just the hospital stay, the surgery, and mostly the intubation that scare the you know what out of me.
But anyway, for today I am SO happy, SO grateful, SO completely amazed at what God has done over this last week. EIGHT OUNCES!!! Wow! The most he's ever gained in a week is six ounces. And I just love you guys to pieces. Ninety-eight comments on a post about my kid gaining eight ounces! I can't say enough about what a great support you are to us, and to me especially. Knowing that Jonah is being prayed for all over the country and the world gives us so much hope and strength. We feel so blessed that God has given us the gift of YOU! Again and again I ask for you to pray VERY specifically, and again and again, God says, "Okay. Since SO MANY of you asked, I'll do it." You can just back and read my daily prayer requests from the NICU and see directly how God answered each and every prayer. Isn't that amazing? So many times God answers prayers or works in our life, and either we're too busy and miss it, we chalk it up to coincidence, or we realize it but then forget about it a week later. I am so BLESSED to have this blog. Not only do I have a record of Jonah's life and medical journey, but most importantly, I have a written record of God's miracles in his life... in our lives. That's just so neat to me. Sorry, I know I'm rambling. I'm just so excited for the day when Jonah can read (and truly understand) where he was, how far he's come, and the many, many things God has done for him.
And maybe by that time, he'll be completely healed.
Faith as a mustard seed...
It's coming, friends. Just you wait and see. 
(My friend, Katie (Quinn's Mom), took this photo of Jonah and me on the hayride at The Pumpkin Patch. I just had to share it. She did such a good job. Look at that sweet face!)
And just to clear things up for those of you who have just begun reading or don't know much about EB - You may think I'm crazy for talking g-tube for a (previously) 17 lb 11 oz eight-month-old. And if he were a "normal" baby, we would be. But the problem is not how much he weighs. The problem is with his growth curve. Any time he starts falling off his growth curve (and a month without gaining any weight was doing that), we have issues. There's a lot to consider with EB, but nutrition is #2 (I consider #1 to be infection). Like I said in an earlier post, once EB kids get behind, it's a real struggle getting them caught up. They need MANY more calories than "healthy" kids, and their bodies require lots of EXTRA to heal the blisters they do have and to regenerate new skin. Healing takes a lot out of you.
So... I hope that explains the urgency of the last couple weeks. And there is still a great chance that we are not out of the woods. I don't think this is the last time we'll be dealing with this (although God can do anything, so we wait in hopeful expectation), as there is so much to consider. G-tubes are good for so many reasons for EB kids - adequate nutrition, a happy alternative to shoving lots of meds and vitamins down your kid's throat, and one I've thought about a lot: a way to nourish them if they fall down and hit their lips or mouth. Can you imagine? Big blisters, days of healing, and the inability to eat. I can see why many EB parents get them. Actually, the idea of the g-tube itself sounds pretty good... it's just the hospital stay, the surgery, and mostly the intubation that scare the you know what out of me.
But anyway, for today I am SO happy, SO grateful, SO completely amazed at what God has done over this last week. EIGHT OUNCES!!! Wow! The most he's ever gained in a week is six ounces. And I just love you guys to pieces. Ninety-eight comments on a post about my kid gaining eight ounces! I can't say enough about what a great support you are to us, and to me especially. Knowing that Jonah is being prayed for all over the country and the world gives us so much hope and strength. We feel so blessed that God has given us the gift of YOU! Again and again I ask for you to pray VERY specifically, and again and again, God says, "Okay. Since SO MANY of you asked, I'll do it." You can just back and read my daily prayer requests from the NICU and see directly how God answered each and every prayer. Isn't that amazing? So many times God answers prayers or works in our life, and either we're too busy and miss it, we chalk it up to coincidence, or we realize it but then forget about it a week later. I am so BLESSED to have this blog. Not only do I have a record of Jonah's life and medical journey, but most importantly, I have a written record of God's miracles in his life... in our lives. That's just so neat to me. Sorry, I know I'm rambling. I'm just so excited for the day when Jonah can read (and truly understand) where he was, how far he's come, and the many, many things God has done for him.
And maybe by that time, he'll be completely healed.
Faith as a mustard seed...
It's coming, friends. Just you wait and see.
(My friend, Katie (Quinn's Mom), took this photo of Jonah and me on the hayride at The Pumpkin Patch. I just had to share it. She did such a good job. Look at that sweet face!)
PRAISE GOD
The nurse just came and took Jonah's weight.
After a month of not gaining even one ounce, Jonah weighed in today at:
18 pounds and 3 ounces
That's an EIGHT ounce gain from last week!!!
Praise God!
After a month of not gaining even one ounce, Jonah weighed in today at:
18 pounds and 3 ounces
That's an EIGHT ounce gain from last week!!!
Praise God!
Wednesday, October 28, 2009
jonah update
Just a short post tonight. I feel very tired and it's my night with Jonah, so I'm trying not to be up too late. Plus, I feel like I should spend some overdue time with my hubby and pretend to care about The World Series... ya know, cause that's what good wives do.
Jonah ate 20.8 oz today and maybe about an ounce of solids.
I gave him the Periactin today before his nap, and he slept for three and a half hours. I don't know if that's because of the medicine or because he was so tired from not having napped yesterday/doctor's appointment today. His sheets were bloody (not unusual) when he woke up and I could tell his nose had been bleeding (unusual), so I'll have to keep an eye out for that. If the new meds dry him out too much, we'll have to stop them... bloody noses and corneal abrasions are the last thing we need. He also seemed VERY itchy from the time he got up from nap to the time he went to bed... strange considering the new med is an antihistamine. AND he was irritable.
So anyway, those things could be coincidental, but I just want to stay on top of it. If the same stuff happens again tonight, and he wakes up irritable and itchy tomorrow, I'll discontinue it. Any of you EB peeps ever tried that med?
Okay, off to wash dishes and mix milk (and pretend to care about baseball).
Jonah ate 20.8 oz today and maybe about an ounce of solids.
I gave him the Periactin today before his nap, and he slept for three and a half hours. I don't know if that's because of the medicine or because he was so tired from not having napped yesterday/doctor's appointment today. His sheets were bloody (not unusual) when he woke up and I could tell his nose had been bleeding (unusual), so I'll have to keep an eye out for that. If the new meds dry him out too much, we'll have to stop them... bloody noses and corneal abrasions are the last thing we need. He also seemed VERY itchy from the time he got up from nap to the time he went to bed... strange considering the new med is an antihistamine. AND he was irritable.
So anyway, those things could be coincidental, but I just want to stay on top of it. If the same stuff happens again tonight, and he wakes up irritable and itchy tomorrow, I'll discontinue it. Any of you EB peeps ever tried that med?
Okay, off to wash dishes and mix milk (and pretend to care about baseball).
GI appt
Our doctor's appt went well this morning. I feel VERY confident that Dr. S is on top of things, researching EB nutrition, g-tubes, and talking to the right people. He had even already emailed with Dr. Fine!!
But, because there's just kind of a natural plateau around eight months and Jonah's not losing weight, he's still in the wait and closely monitor stage. He said things will change if he starts losing weight, stops eating in his sleep, or goes a few more weeks without any weight gain.
He's talking with the surgeons and anesthesiologists at Brenner's so we can go ahead and get everybody up to speed and start discussions of what would need to happen if we did have to get the surgery.
And he's been started on Periactin just to see if it might work. Periactin is an antihistamine that also increases appetite. He just wants us to try that before we take more drastic measures.
So that's where we stand right now. No plans for surgery in the immediate future, praying that the Periactin will work at increasing his appetite and that Jonah will show interest in solids... especially the yogurt which has lots of nourishment value (as opposed to other stuff that's more just getting them used to eating food.)
Thanks for praying!
But, because there's just kind of a natural plateau around eight months and Jonah's not losing weight, he's still in the wait and closely monitor stage. He said things will change if he starts losing weight, stops eating in his sleep, or goes a few more weeks without any weight gain.
He's talking with the surgeons and anesthesiologists at Brenner's so we can go ahead and get everybody up to speed and start discussions of what would need to happen if we did have to get the surgery.
And he's been started on Periactin just to see if it might work. Periactin is an antihistamine that also increases appetite. He just wants us to try that before we take more drastic measures.
So that's where we stand right now. No plans for surgery in the immediate future, praying that the Periactin will work at increasing his appetite and that Jonah will show interest in solids... especially the yogurt which has lots of nourishment value (as opposed to other stuff that's more just getting them used to eating food.)
Thanks for praying!
Tuesday, October 27, 2009
eight months today
Hi Friends!
But then Mom will start jumping up and down and screaming, and I get distracted and roll back to my back. And I just smile and smile like I've already accomplished the goal. (And really, I have, because, little does Mom know, my only goal is to make her jump up and down and scream like a crazy person.)
Sometimes Mom helps me roll over. The OT calls this "facilitating the rolling over." I call it "Mom shoving me over on my face." Semantics.
But when I do get over on my tummy, this is typically my reaction:
When I'm in a decent mood, at least. Mom feels like it will be just a matter of days though. Because I am so close. If I could just figure out what to do with my stupid elbow.
I'm still not sitting up, but sometimes I can do it on my own for about five seconds. Then I either tip forward or fling myself back. Mom can't wait til I can sit up and support my own weight more. She says I'm getting heavy.
I'm sleeping mostly through the night (this week anyway), but Mom and Dad are still getting me up around 3:30 for a feeding. Most of the time I go right back to sleep. Sometimes I stay up for two hours. Depends on my mood. Some days I nap for two to three hours. Some days I sleep for two minutes. I like to keep The Big People on their toes. Makes life a lot more interesting.
I have a few favorite toys. I really like my dog whose ears flap up and down. Did you know he can sing? He sings "Do Your Ears Hang Low?" and I think he's really funny. I also like my soft, colorful Very Hungry Caterpillar. I like to chew on his antennas. Granny keeps calling them his antlers. She's so silly. Silly Granny, antlers are for mammals. And my Aunt Katherine just got me ALL. THREE. WONDER PETS.
I know, I know. I'm one lucky boy. What's that? You're jealous? You shouldn't be. Thou shalt not covet thy neighbor's Wonder Pets.
I also love another toy. The Big People call him "Deac." I don't know what a Deac is exactly, but I think he is awesome! Every time he comes near me, Mommy says, "Say, 'Hey Deac!'" And I just smile and kick my legs and try to get my hands on him. Sometimes he'll let me pet him, and he tolerates me pretty well. Notice I said "tolerates." I certainly wouldn't say he feels quite the same affection for me as I do for him.
He likes to sit at this distance.
Some new things this last month - I like to play a game Mom refers to as "respiratory distress" where I suck air in and make a scary noise. Mom comes running to realize that I'm making that noise completely on purpose and cracking myself up. (What she doesn't know is that I'm laughing at her.)
My favorite song right now is "You Are My Sunshine." That seems to change from month to month though. What can I say? I'm a man with refined tastes. I need to change it up every now and then.
Okay, I'm off to bed. Mom says I have a really important doctor's appointment tomorrow to decide about my g-tube. I ate 29 ounces today!!! True, I spit up about four of them, but still, that's so much better. The reason I ate more is because I did not nap at all, so I was really tired all day. Mom could feed me every two to three hours and I would just take a 15 to 20 minute cat nap while she fed me. And then I was all done... with both eating and sleeping.
Could you pray for me and The Big People? Mom just needs to feel what the right decisions are. She needs certain doors to open and others to close, so she'll know what to do. A new fear has clinched her heart tonight - that maybe the intubation from the g-tube surgery will lead to scarring in my trachea which will lead to a tracheostomy (now that I'm finally a silent breather with NO STRIDOR)... if not immediate, then down the road. So now, although she was feeling more content about the surgery (not the who and where of it all, but at least the getting the g-tube part), she's all upside down again in her head and heart.
It's hard being eight months old. Lots of big decisions and tough choices. Mom and Dad know I'm so strong though. They know I can overcome any obstacle and that God will get me through it. And like Dad says, I may have some physical setbacks, but EB can't do anything to my mind and heart. And Mom says they're stronger than just about anybody's. She says she couldn't love me more if her life depended on it. Her heart's about to explode, she says. Don't worry. I'll make sure she gets that checked out.
Today I turned eight months old. Wow! I'm getting so big.
I currently weigh 17 lbs, 11 oz and have for the last three and a half weeks.
Mom says I'm just as cute as ever... especially now that my hair has started coming back. It's getting so thick on top. Mom's favorite thing is to put it up in a mohawk after my bath.
And it will stay up without ANY Aquaphor, although it pretty much always has Aquaphor in it. I'm greasy, and I like it.
Socially and cognitively, I'm right on track. I make lots of sounds and love to talk. I think I get that from my mom. She never shuts up. Seriously Mom, I don't need to know everything. Really, some boundaries are okay. And don't think I didn't notice the other day that you kissed my bare hiney. I'm not letting that one go.
I regularly make the sounds ma, da, na, geh, and I sort of roll my r's. Mom's excited about that one. She says that will serve me well in my Spanish-speaking endeavors. Too bad it's a very slobbery skill at this point. We are going through many burp cloths around here. My favorite sound is my "machine gun" sound - eh eh eh eh eh eh. You get the idea. I make this face when I do it:
I've also learned to put my feet down when I'm lying down and arch my back up. I kind of jump up and down in that way, and I just think it's the best. Mom doesn't share that opinion when it comes to dressing change. I've just added it to my repertoire of things I do to make dressing change a little more complicated. It makes me really happy, though, so ultimately Mom thinks it's great too!
I am SO close to rolling over. See?
But then Mom will start jumping up and down and screaming, and I get distracted and roll back to my back. And I just smile and smile like I've already accomplished the goal. (And really, I have, because, little does Mom know, my only goal is to make her jump up and down and scream like a crazy person.)
Sometimes Mom helps me roll over. The OT calls this "facilitating the rolling over." I call it "Mom shoving me over on my face." Semantics.
But when I do get over on my tummy, this is typically my reaction:
When I'm in a decent mood, at least. Mom feels like it will be just a matter of days though. Because I am so close. If I could just figure out what to do with my stupid elbow.
I'm still not sitting up, but sometimes I can do it on my own for about five seconds. Then I either tip forward or fling myself back. Mom can't wait til I can sit up and support my own weight more. She says I'm getting heavy.
I'm sleeping mostly through the night (this week anyway), but Mom and Dad are still getting me up around 3:30 for a feeding. Most of the time I go right back to sleep. Sometimes I stay up for two hours. Depends on my mood. Some days I nap for two to three hours. Some days I sleep for two minutes. I like to keep The Big People on their toes. Makes life a lot more interesting.
I have a few favorite toys. I really like my dog whose ears flap up and down. Did you know he can sing? He sings "Do Your Ears Hang Low?" and I think he's really funny. I also like my soft, colorful Very Hungry Caterpillar. I like to chew on his antennas. Granny keeps calling them his antlers. She's so silly. Silly Granny, antlers are for mammals. And my Aunt Katherine just got me ALL. THREE. WONDER PETS.
I know, I know. I'm one lucky boy. What's that? You're jealous? You shouldn't be. Thou shalt not covet thy neighbor's Wonder Pets.
I also love another toy. The Big People call him "Deac." I don't know what a Deac is exactly, but I think he is awesome! Every time he comes near me, Mommy says, "Say, 'Hey Deac!'" And I just smile and kick my legs and try to get my hands on him. Sometimes he'll let me pet him, and he tolerates me pretty well. Notice I said "tolerates." I certainly wouldn't say he feels quite the same affection for me as I do for him.
He likes to sit at this distance.
I like it when he sits here.
Some new things this last month - I like to play a game Mom refers to as "respiratory distress" where I suck air in and make a scary noise. Mom comes running to realize that I'm making that noise completely on purpose and cracking myself up. (What she doesn't know is that I'm laughing at her.)
I still stop whatever cute thing I'm doing when Mom gets out the video camera and make crazy eyes. Drives Mom nuts. I'm still digging bath time for the most part, and Mom can't wait til I can sit up and she can cushion a seat for me so that I can actually be in the water. She just knows I'm gonna love it. I'm starting to laugh more frequently and with more gusto than before. And, oh man, when Dad comes home, I just go nuts... kicking my legs, flapping my arms, grunting, smiling. I'm so happy to see him!
My favorite song right now is "You Are My Sunshine." That seems to change from month to month though. What can I say? I'm a man with refined tastes. I need to change it up every now and then.
Okay, I'm off to bed. Mom says I have a really important doctor's appointment tomorrow to decide about my g-tube. I ate 29 ounces today!!! True, I spit up about four of them, but still, that's so much better. The reason I ate more is because I did not nap at all, so I was really tired all day. Mom could feed me every two to three hours and I would just take a 15 to 20 minute cat nap while she fed me. And then I was all done... with both eating and sleeping.
Could you pray for me and The Big People? Mom just needs to feel what the right decisions are. She needs certain doors to open and others to close, so she'll know what to do. A new fear has clinched her heart tonight - that maybe the intubation from the g-tube surgery will lead to scarring in my trachea which will lead to a tracheostomy (now that I'm finally a silent breather with NO STRIDOR)... if not immediate, then down the road. So now, although she was feeling more content about the surgery (not the who and where of it all, but at least the getting the g-tube part), she's all upside down again in her head and heart.
It's hard being eight months old. Lots of big decisions and tough choices. Mom and Dad know I'm so strong though. They know I can overcome any obstacle and that God will get me through it. And like Dad says, I may have some physical setbacks, but EB can't do anything to my mind and heart. And Mom says they're stronger than just about anybody's. She says she couldn't love me more if her life depended on it. Her heart's about to explode, she says. Don't worry. I'll make sure she gets that checked out.
update on tripp
Here's an update from Tripp's Caring Bridge.
Hey it's mom. Well, we certainly knew that a tracheostomy was in the near future, but weren't really expecting it today. He went into surgery around 10:30 this morning and the plan was to go in and cut some tissue that was blocking his airway so he could breathe better. Well, when his ENT came out into the waiting room, I knew as soon as I saw her face that something was wrong (she has gotten VERY close to Tripp and our family, we LOVE her.) Anyway, she said that his airway was so swollen and had what she thought was some granulation tissue. She showed us pictures of the scope... pretty intense. Don't know how the little man was even breathing. She said that it was so swollen that she didn't think it would help to make the cuts. So the decision was pretty much made right there for us. THAT was tough. He is now back in ICU and doing well. Everything went fine, thank GOD and thank EVERYONE who was praying for our little fighter. He is starting to breathe a little bit on his own, so they are weaning the oxygen a little at a time. He is the most beautiful little thing... even more so now. I just love him so much and respect him so much. He is so strong. Stronger than I could ever be. He's amazing. I just can't wait until the initial shock and aggravation wears off and he can know what it feels like to actually be able to breathe!! And I am having serious withdrawals because I haven't held him and rocked him in like 3 days.. AHHH... I just want to pick him up and squeeze him and tell him how proud I am of him. Randy and I thank you from the bottom of our hearts for all of your thoughts and prayers. We need them so much and all the encouragement really helps us in such a difficult time. THANK YOU.Well, I just wanted to let everyone know that he now has the trach and everything is so far so good. I will try my best to keep you updated.
All my love, Courtney
So anyway, obviously a tracheostomy wasn't the desired outcome, but of course, the ultimate outcome is that Tripp can breathe easier now, which is what everyone wants. Courtney said that his skin is good, and he only got one little place on his arm from the blood pressure cuff. Pretty amazing.
Thank you for praying.
Hey it's mom. Well, we certainly knew that a tracheostomy was in the near future, but weren't really expecting it today. He went into surgery around 10:30 this morning and the plan was to go in and cut some tissue that was blocking his airway so he could breathe better. Well, when his ENT came out into the waiting room, I knew as soon as I saw her face that something was wrong (she has gotten VERY close to Tripp and our family, we LOVE her.) Anyway, she said that his airway was so swollen and had what she thought was some granulation tissue. She showed us pictures of the scope... pretty intense. Don't know how the little man was even breathing. She said that it was so swollen that she didn't think it would help to make the cuts. So the decision was pretty much made right there for us. THAT was tough. He is now back in ICU and doing well. Everything went fine, thank GOD and thank EVERYONE who was praying for our little fighter. He is starting to breathe a little bit on his own, so they are weaning the oxygen a little at a time. He is the most beautiful little thing... even more so now. I just love him so much and respect him so much. He is so strong. Stronger than I could ever be. He's amazing. I just can't wait until the initial shock and aggravation wears off and he can know what it feels like to actually be able to breathe!! And I am having serious withdrawals because I haven't held him and rocked him in like 3 days.. AHHH... I just want to pick him up and squeeze him and tell him how proud I am of him. Randy and I thank you from the bottom of our hearts for all of your thoughts and prayers. We need them so much and all the encouragement really helps us in such a difficult time. THANK YOU.Well, I just wanted to let everyone know that he now has the trach and everything is so far so good. I will try my best to keep you updated.
All my love, Courtney
So anyway, obviously a tracheostomy wasn't the desired outcome, but of course, the ultimate outcome is that Tripp can breathe easier now, which is what everyone wants. Courtney said that his skin is good, and he only got one little place on his arm from the blood pressure cuff. Pretty amazing.
Thank you for praying.
Monday, October 26, 2009
pumpkin patch, part 2
We went to J. Razz and Tazz Farm. I thought it was pretty fun... lots of things for the kids to do, but the pumpkin patch is kinda small... basically about 20 to 30 pumpkins sitting under a small batch of trees.
Shaina took all these photos. I played around with them in Photoshop.
I have decided that I like color.
Jonah's girlfriend, Quinn, and her dad, Nathan.
Jonah and Quinn in the pumpkin patch.
Looking at the pumpkins.
Apparently I picked the wrong one.
My niece, Ainsley, and Quinn's big sister, Rory.
The Cow Train.
Turkey in the straw. Jonah in the corn.
It took me two days to blur this corn. Make sure you appreciate it.
Shaina took all these photos. I played around with them in Photoshop.
I have decided that I like color.
Jonah's girlfriend, Quinn, and her dad, Nathan.
Jonah and Quinn in the pumpkin patch.
Looking at the pumpkins.
Apparently I picked the wrong one.
My niece, Ainsley, and Quinn's big sister, Rory.
The Cow Train.
My brother, Peyton, his wife, Amy, and Baby J... watchin' the Cow Train.
Peyton... don't ask.
It took me two days to blur this corn. Make sure you appreciate it.
Asher and Ainsley in the corn bin.
eating update 2
Quick update and I'm also hoping to get some pics up tonight...
Jonah had 22 oz on Saturday with 2 oz solids.
He had 19.8 oz yesterday with maybe an ounce of solids.
And he ate 20.5 oz today with NO SOLIDS.
When we were really struggling with solids before this past week, he would keep his mouth clamped, but he would usually loosen up a little for about a half an ounce or ounce of food, and I could work it in that way.
Then, he started opening his mouth for it, and I thought we had made a breakthrough.
NOW, he not only clamps his mouth even tighter than before, he's also learned that if he shakes his head back and forth, he can avoid the spoon completely. And I don't push it. One, because there's no way to get it in without holding him down even if I wanted to. And two, because I don't want to create yet another food aversion.
So... I'd say 99.5% chance we ARE getting the g-tube. I guess I'll know more after Wednesday morning, but the more Matt and I discuss it, the more we feel it's what Jonah needs. He's just not picking it up nor is he showing ANY desire for solids. Twenty ounces is just not enough to sustain and grow him.
So now it's...
Do we do it here at Brenner's, trust that God will provide very humble, compliant doctors, educate them ourselves and just have them contact doctors who've done it before?
Do we go to Chapel Hill where they have one doc who has some experience with EB kids (vague and limited info on this one... have to check into it)?
Or do we try to do all this in Cincy? (Many days away from home, out of town dressing changes, many hours of driving either way, Jonah in a car seat for many hours post-operation, Matt with very little time off etc.)
Lots to figure out... trusting that God will make it clear. Feeling like we're probably in a time crunch and things need to start falling into place really soon.
***********************************************
Haven't gotten an update on Tripp yet. Worried, praying, hoping for good news really soon. Will pass it along as soon as I hear something. You can follow his Caring Bridge Site Here.
Jonah had 22 oz on Saturday with 2 oz solids.
He had 19.8 oz yesterday with maybe an ounce of solids.
And he ate 20.5 oz today with NO SOLIDS.
When we were really struggling with solids before this past week, he would keep his mouth clamped, but he would usually loosen up a little for about a half an ounce or ounce of food, and I could work it in that way.
Then, he started opening his mouth for it, and I thought we had made a breakthrough.
NOW, he not only clamps his mouth even tighter than before, he's also learned that if he shakes his head back and forth, he can avoid the spoon completely. And I don't push it. One, because there's no way to get it in without holding him down even if I wanted to. And two, because I don't want to create yet another food aversion.
So... I'd say 99.5% chance we ARE getting the g-tube. I guess I'll know more after Wednesday morning, but the more Matt and I discuss it, the more we feel it's what Jonah needs. He's just not picking it up nor is he showing ANY desire for solids. Twenty ounces is just not enough to sustain and grow him.
So now it's...
Do we do it here at Brenner's, trust that God will provide very humble, compliant doctors, educate them ourselves and just have them contact doctors who've done it before?
Do we go to Chapel Hill where they have one doc who has some experience with EB kids (vague and limited info on this one... have to check into it)?
Or do we try to do all this in Cincy? (Many days away from home, out of town dressing changes, many hours of driving either way, Jonah in a car seat for many hours post-operation, Matt with very little time off etc.)
Lots to figure out... trusting that God will make it clear. Feeling like we're probably in a time crunch and things need to start falling into place really soon.
***********************************************
Haven't gotten an update on Tripp yet. Worried, praying, hoping for good news really soon. Will pass it along as soon as I hear something. You can follow his Caring Bridge Site Here.
Sunday, October 25, 2009
pumpkin patch, part 1
We did make it to the Pumpkin Patch today, and I have many more pictures and some words to go with them, but it's already after 11:00, and Jonah's decided that he likes to wake up at 6:30 at least every other morning.
So...
More pictures to come, but here are a couple of my favorites. I'm still learning Photoshop so these two took me MUCH LONGER to edit than I care to admit. I'm embarrassed actually... but learning.
So I'll try to work on the others and get them up... ya know... sometime relatively soon... maybe.
Three important lessons I learned today:
So...
More pictures to come, but here are a couple of my favorites. I'm still learning Photoshop so these two took me MUCH LONGER to edit than I care to admit. I'm embarrassed actually... but learning.
So I'll try to work on the others and get them up... ya know... sometime relatively soon... maybe.
Three important lessons I learned today:
1. If you take a hay ride with your almost eight month old baby, do NOT sit right next to the farmer man whose trying to give the tour of the farm. Because your baby WILL scream the entire time, and you WILL spend the whole ride clapping his hands for him (because he thinks it's really funny) and singing "You Are My Sunshine" in his ear over and over again, holding your breath, hoping that he'll please, please be quiet... your baby, that is, not the farmer.
2. You should probably go to the pumpkin patch to get cute pics and maneuver your child into ridiculous poses at the beginning of the trip, when he's still in a semi-decent mood, rather than waiting until last thing. It wasn't pretty, people. Just wait. You'll see. (You know, sometime in the ambiguous future.)
3. And finally, meteorologists are full of poop. Up to the time we left the hour by hour forecast was saying it was going to be 65 degrees and sunny. Not so much. It was cloudy, and it couldn't have been over 55. CHILLY.
We had a good time though... definitely made memories... just not the kind I was expecting. :)
**********************************
prayer request for baby tripp
Hey Everybody!
It's me, Jonah.
This is my friend, Tripp. He is five months old.
He has Junctional EB too.
That really stinks, huh?
Anyway, my mommy told me that he is in the hospital again tonight. He has had to be in the hospital a lot lately because he's having a lot of trouble breathing. They've moved him into the ICU. See?
Anyway, they scoped him, and his epiglottis is swollen, and tomorrow he has to have surgery to get some tissue cut in his throat. They are worried that it might cause blistering or scarring, but they don't have any other choice. It's either this or a tracheostomy, so they want to try this first.
Would you please pray for my friend? His mommy is so sweet and has been such a big support to my mommy, and I hope to get to meet Tripp one day really soon. He already has a g-tube, so he's trying to help me feel not as scared about having to get one. He's very brave.
Maybe you could also visit his Caring Bridge Site and leave him (and his parents) some messages of HOPE and LOVE! Mommy remembers when I was in the hospital with breathing problems over Easter, and she was so scared. She says this g-tube stuff is nothing compared to breathing issues.
So please pray for Tripp and his parents, Courtney and Randy.
All EB kids are SOOO amazing, but Tripp holds a special place in our hearts.
Thanks y'all! You're the best!
Saturday, October 24, 2009
eating update
Just checking in... Very tired and determined to be in bed, asleep, by 10:16.
Jonah did a little better today. He took a little over 22 ounces by bottle, which is a great improvement over the last couple days. Unfortunately, it's still probably not enough. And it's a little easier to get it in him when Matt's here, because when he refuses to eat for one of us, sometimes he'll eat for the other one. He probably ate about two ounces of solids.
We have a GI appointment at 8:30 on Wednesday morning, so I suppose I'll find out more then about our timeline, how many ounces he'd need to be taking, how much weight he'd need to gain etc to NOT have the g-tube. Or maybe they'll schedule surgery. I don't really know what we're going to find out at that appointment.
We were supposed to go to a pumpkin patch today, but since it was rainy and gross for a lot of the day, we didn't get to go. But I am determined to have that memory with Jonah, and tomorrow will be our last chance, so we plan on going tomorrow. Unfortunately that means we won't get to go to church because we'll have to get dressing change done before we go. Bummer. Typically I wouldn't put a pumpkin patch before church, but since we can't really get out during the week, if we're going to go, tomorrow's it.
Okay, I'm off to bed. Thanks for continuing to pray. We have faith that our miracle is coming... exactly what form it will take and when we don't know.
But hey, if God decides to give us an appetizer miracle of Jonah eating and no g-tube followed by a big ol' helping of complete and total healing, we'll sure take it. I won't even ask for dessert.
Jonah did a little better today. He took a little over 22 ounces by bottle, which is a great improvement over the last couple days. Unfortunately, it's still probably not enough. And it's a little easier to get it in him when Matt's here, because when he refuses to eat for one of us, sometimes he'll eat for the other one. He probably ate about two ounces of solids.
We have a GI appointment at 8:30 on Wednesday morning, so I suppose I'll find out more then about our timeline, how many ounces he'd need to be taking, how much weight he'd need to gain etc to NOT have the g-tube. Or maybe they'll schedule surgery. I don't really know what we're going to find out at that appointment.
We were supposed to go to a pumpkin patch today, but since it was rainy and gross for a lot of the day, we didn't get to go. But I am determined to have that memory with Jonah, and tomorrow will be our last chance, so we plan on going tomorrow. Unfortunately that means we won't get to go to church because we'll have to get dressing change done before we go. Bummer. Typically I wouldn't put a pumpkin patch before church, but since we can't really get out during the week, if we're going to go, tomorrow's it.
Okay, I'm off to bed. Thanks for continuing to pray. We have faith that our miracle is coming... exactly what form it will take and when we don't know.
But hey, if God decides to give us an appetizer miracle of Jonah eating and no g-tube followed by a big ol' helping of complete and total healing, we'll sure take it. I won't even ask for dessert.
Friday, October 23, 2009
matt's answers
Do you think Jonah takes more after you or Patrice and why?
Jonah is loving and strong-willed. These are two adjectives that I think anyone who knows Patrice would use to describe her. Being strong-willed is what makes him a fighter, so I wouldn’t have it any other way.
What first attracted you to Patrice?
I was attracted to her for the first time on our senior trip after high school graduation. She had just gotten out of the shower. Seriously. (Note from Patrice: I was fully dressed with a towel on my head. Don’t freak out, Dad... See? Inappropriate. I told you guys.) It was because of her playfulness and sense of humor. She was and still is so much fun to be around.
What is something that you have learned about Patrice since you had Jonah?
The fact that she became Supermom did not surprise me. I expected this all along. It’s one of the reasons I married her.
Her ability to adapt did surprise me. I would have never have imagined how quickly she adapted to caring for an EB baby, and how quickly she used the resources available to her to make the best decisions for Jonah.
Do you think you have the coolest wife ever?
Yes.
What do you love most about Patrice?
What I love the most about Patrice is her laugh. If she laughs, I laugh. There are few things in this world that make me feel more alive than her laugh.
What do you respect most about Patrice?
She is herself all the time. You may have guessed by the transparency on her blog, and she is like that in real life. You don’t have to wonder where she stands on any issue or how she is feeling at that moment.
What do you think is her most beautiful feature?
Her eyes. I am so thankful that Jonah has her blue eyes.
What is one thing about Jonah that makes you smile?
Jonah laughs at the pictures of himself on the wall. He loves looking at himself. He must get that from me. Patrice says that I look in the mirror a lot. I also think it’s funny when he farts.
What is the single most important event in WFU sports history and why?
In my lifetime, many would say the most important was winning the ACC football championship in 2006 and playing in the Orange Bowl and proving that WFU can contend on a national scale. But I would have to say that my favorite event was the 1995 ACC Tournament in which Wake won by beating Duke, UVA, and UNC in the championship game. Randolph Childress (my favorite basketball player of all time), broke the single tournament scoring record with 40, 30, and 37 points respectively.
What is your perfect date? If you had 4-5 hours of date time with Patrice what would you do to sweep her off of her feet?
Humphrey Bogart once said, “A hot dog at the ballpark is better than a steak at the Ritz.” That said, my dream date would be a couple of hot dogs at a baseball game followed by a trip to Waffle House for a cheese steak omelet, grits, and hashbrowns scattered (on the grill), smothered (with onions) and covered (with cheese). If you’d like, you can also get them chunked (with ham), diced (with tomatoes), and topped (with chili).
Oh wait, the point was to sweep Patrice off of her feet? Oops. I am not much of a romantic, even though I wish I were. Patrice likes to eat, so I would definitely take her to a restaurant. Somewhere where we could sit outside that had some nice scenery. She also likes to take walks, either through downtown, on a beach, in the park. No movies and no sports for sure.
How many Target charges appear on your credit card statement each month?
Wow, so far in October only four. I would estimate eight to ten per month.
What do you eat for breakfast, lunch, and dinner?
For breakfast, Pop Tarts. Usually Frosted Strawberry.
For lunch, usually leftovers at work during the week, but on weekends, usually a double decker fried bologna sandwich on toast with Honey BBQ Fritos.
For dinner, whatever Patrice cooks. If she doesn’t cook, then Chick-fil-A. Sunday night is always pizza night.
I don’t claim to eat healthy, but at least the Pop Tarts that I eat are low fat.
What do you do for work? Is your work supportive of some of the extra needs Jonah has? Are they willing to work with your schedule?
I am an accountant for a staffing company. I would tell you the name the company that I work for, but the last time that it got out some freaksickle called me at work while Jonah was in the NICU and told me he could help Jonah if I could convince the hospital to use his machine along with water treatments. I don’t know exactly what kind of machine it was, but I am imagining that it is like the death machine in The Princess Bride that takes a year off of your life every time you use it.
My work is super supportive of Jonah’s special needs. I work a little bit of a modified schedule and I also have the capability to work from home when needed.
What are some of these “hilariously inappropriate” things that Patrice is referring to?
Hilariously inappropriate? She may be referring to me constantly quoting lines from some of my favorite movies, wholesome flicks like Clerks, Dogma, Old School, and Wedding Crashers or maybe the fact that I am too open with my bodily functions.
We know that Patrice wants more kids? What is your perspective on this? Do you want more kids?
I used to joke that I wanted nine kids so I could have my own baseball team. I definitely want more kids. It is tough to come to terms with the fact that we will most likely never have another child that is genetically ours. That being said, Jonah is more than enough for me in that respect. So, yes, I definitely want more kids. Patrice and I have discussed embryo adoption. She wants to get this process started sooner than later. I just want to be able to sleep past 9:00 a.m. one Saturday before we have another kid.
Are you sarcastic?
Yes. I would try to think of something sarcastic to say to prove this, but that just seems like a lot of work.
Do you speak Spanish?
I can understand it better than I can speak it. Patrice and I were in the same Spanish class our junior year and senior year of high school. Patrice was very good student, and I liked to watch TV. I made a higher grade than her when we had a test on a play we had to read “La Dama del Alba.” The test also had some vocabulary on it. Patrice says I only made a higher grade than her because she didn’t know there was going to be any vocab on the test, so she didn’t study it, but I didn’t even read the play. I use this one instance to illustrate my superiority over Patrice in the world of Spanish even though she is fluent and I can’t even order at El Maguey.
Matt’s Spanish lesson for the day- How do you say “I would win”?
GanarÃa
Say it out loud.
What words of wisdom/fatherly advice can you pass on to first time parents?
You think you know, but you have no idea. I didn’t realize the constancy of it all. It is 100% full throttle all the time. You have to be able to put your needs aside and focus all of your energy into someone who is totally dependent on you, and it’s totally worth it. At the same time appreciate every little moment, because you never know when it will be taken away.
How did you propose to Patrice?
I proposed to Patrice the day she got back from three weeks in Argentina. She had been there over winter break. When she came home, we went out to eat at a Japanese steakhouse and then to my apartment to exchange Christmas gifts, and I had our song “Blue Sky” by the Allman Brothers Band playing and I had written her a letter so that when she was done she would see me down on one knee with the ring. She said yes and also gave me a baseball card autographed by Marcus Giles. That was a good night.
What is your favorite dish that Patrice makes? Can I have the recipe?
My favorite dish that Patrice makes is bacon wrapped beef tenderloin and baked potatoes stuffed with cheese, onions, and mushrooms.
Recipe: Wrap meat in meat. Take potato and put cheese, onions, and mushrooms in it. Patrice can probably give you the real one.
Do you like Target?
Target is okay. I like it best when Diet Dr. Pepper is on sale.
Do you like Chick-fil-A?
Yes, I love it every bit as much as Patrice. I get a #1, no pickle, value sized with Diet Dr. Pepper. And of course Chick-fil-A sauce, which I have you guys to thank for.
What is your favorite sport? Who is your favorite pro and college team?
What an excellent question. Living on Tobacco Road, I would have to say that basketball is my favorite sport. I am also a huge fan of baseball and football. My favorite college team is Wake Forest and my favorite pro team is the Atlanta Braves.
What is your favorite ice cream flavor?
Edy’s Girl Scouts Somoas Cookie Ice Cream.
What is your most favorite food ever that you swear you could not live without?
Well, my favorite food is probably pizza. I think I could live without it though. The one thing I could not live without is Diet Dr. Pepper. My dentist asked me if I was going to stop drinking it after I had nine cavities one visit. I said no and quit going to that dentist.
Do you use insensitive remarks and/or stares as an opportunity to educate others about EB?
I have not gotten any insensitive remarks yet, but we get a lot of terrible stares. I just stare right back. If we are outside, I make sure to take off my sunglasses so the person knows I am staring at them. I know it’s bad. I am working on it.
If you could give Jonah one pieces of advice to help him in life what would it be?
I tell Jonah every time that I am dressing him that we are putting his pants on one leg at a time just like everybody else. It is important that he realizes that he is no different than anyone else, and can still do anything that he sets his mind to, but won’t be given anything either. He could be a missionary who brings people to Christ or he could be a doctor that finds a cure for EB, but he will have to work for it. He may be physically limited, but the power of his heart, soul and mind are limitless. EB cannot touch any one of these things.
**************************************
Don't miss the post below if you'd like a Jonah update.
Jonah is loving and strong-willed. These are two adjectives that I think anyone who knows Patrice would use to describe her. Being strong-willed is what makes him a fighter, so I wouldn’t have it any other way.
What first attracted you to Patrice?
I was attracted to her for the first time on our senior trip after high school graduation. She had just gotten out of the shower. Seriously. (Note from Patrice: I was fully dressed with a towel on my head. Don’t freak out, Dad... See? Inappropriate. I told you guys.) It was because of her playfulness and sense of humor. She was and still is so much fun to be around.
What is something that you have learned about Patrice since you had Jonah?
The fact that she became Supermom did not surprise me. I expected this all along. It’s one of the reasons I married her.
Her ability to adapt did surprise me. I would have never have imagined how quickly she adapted to caring for an EB baby, and how quickly she used the resources available to her to make the best decisions for Jonah.
Do you think you have the coolest wife ever?
Yes.
What do you love most about Patrice?
What I love the most about Patrice is her laugh. If she laughs, I laugh. There are few things in this world that make me feel more alive than her laugh.
What do you respect most about Patrice?
She is herself all the time. You may have guessed by the transparency on her blog, and she is like that in real life. You don’t have to wonder where she stands on any issue or how she is feeling at that moment.
What do you think is her most beautiful feature?
Her eyes. I am so thankful that Jonah has her blue eyes.
What is one thing about Jonah that makes you smile?
Jonah laughs at the pictures of himself on the wall. He loves looking at himself. He must get that from me. Patrice says that I look in the mirror a lot. I also think it’s funny when he farts.
What is the single most important event in WFU sports history and why?
In my lifetime, many would say the most important was winning the ACC football championship in 2006 and playing in the Orange Bowl and proving that WFU can contend on a national scale. But I would have to say that my favorite event was the 1995 ACC Tournament in which Wake won by beating Duke, UVA, and UNC in the championship game. Randolph Childress (my favorite basketball player of all time), broke the single tournament scoring record with 40, 30, and 37 points respectively.
What is your perfect date? If you had 4-5 hours of date time with Patrice what would you do to sweep her off of her feet?
Humphrey Bogart once said, “A hot dog at the ballpark is better than a steak at the Ritz.” That said, my dream date would be a couple of hot dogs at a baseball game followed by a trip to Waffle House for a cheese steak omelet, grits, and hashbrowns scattered (on the grill), smothered (with onions) and covered (with cheese). If you’d like, you can also get them chunked (with ham), diced (with tomatoes), and topped (with chili).
Oh wait, the point was to sweep Patrice off of her feet? Oops. I am not much of a romantic, even though I wish I were. Patrice likes to eat, so I would definitely take her to a restaurant. Somewhere where we could sit outside that had some nice scenery. She also likes to take walks, either through downtown, on a beach, in the park. No movies and no sports for sure.
How many Target charges appear on your credit card statement each month?
Wow, so far in October only four. I would estimate eight to ten per month.
What do you eat for breakfast, lunch, and dinner?
For breakfast, Pop Tarts. Usually Frosted Strawberry.
For lunch, usually leftovers at work during the week, but on weekends, usually a double decker fried bologna sandwich on toast with Honey BBQ Fritos.
For dinner, whatever Patrice cooks. If she doesn’t cook, then Chick-fil-A. Sunday night is always pizza night.
I don’t claim to eat healthy, but at least the Pop Tarts that I eat are low fat.
What do you do for work? Is your work supportive of some of the extra needs Jonah has? Are they willing to work with your schedule?
I am an accountant for a staffing company. I would tell you the name the company that I work for, but the last time that it got out some freaksickle called me at work while Jonah was in the NICU and told me he could help Jonah if I could convince the hospital to use his machine along with water treatments. I don’t know exactly what kind of machine it was, but I am imagining that it is like the death machine in The Princess Bride that takes a year off of your life every time you use it.
My work is super supportive of Jonah’s special needs. I work a little bit of a modified schedule and I also have the capability to work from home when needed.
What are some of these “hilariously inappropriate” things that Patrice is referring to?
Hilariously inappropriate? She may be referring to me constantly quoting lines from some of my favorite movies, wholesome flicks like Clerks, Dogma, Old School, and Wedding Crashers or maybe the fact that I am too open with my bodily functions.
We know that Patrice wants more kids? What is your perspective on this? Do you want more kids?
I used to joke that I wanted nine kids so I could have my own baseball team. I definitely want more kids. It is tough to come to terms with the fact that we will most likely never have another child that is genetically ours. That being said, Jonah is more than enough for me in that respect. So, yes, I definitely want more kids. Patrice and I have discussed embryo adoption. She wants to get this process started sooner than later. I just want to be able to sleep past 9:00 a.m. one Saturday before we have another kid.
Are you sarcastic?
Yes. I would try to think of something sarcastic to say to prove this, but that just seems like a lot of work.
Do you speak Spanish?
I can understand it better than I can speak it. Patrice and I were in the same Spanish class our junior year and senior year of high school. Patrice was very good student, and I liked to watch TV. I made a higher grade than her when we had a test on a play we had to read “La Dama del Alba.” The test also had some vocabulary on it. Patrice says I only made a higher grade than her because she didn’t know there was going to be any vocab on the test, so she didn’t study it, but I didn’t even read the play. I use this one instance to illustrate my superiority over Patrice in the world of Spanish even though she is fluent and I can’t even order at El Maguey.
Matt’s Spanish lesson for the day- How do you say “I would win”?
GanarÃa
Say it out loud.
What words of wisdom/fatherly advice can you pass on to first time parents?
You think you know, but you have no idea. I didn’t realize the constancy of it all. It is 100% full throttle all the time. You have to be able to put your needs aside and focus all of your energy into someone who is totally dependent on you, and it’s totally worth it. At the same time appreciate every little moment, because you never know when it will be taken away.
How did you propose to Patrice?
I proposed to Patrice the day she got back from three weeks in Argentina. She had been there over winter break. When she came home, we went out to eat at a Japanese steakhouse and then to my apartment to exchange Christmas gifts, and I had our song “Blue Sky” by the Allman Brothers Band playing and I had written her a letter so that when she was done she would see me down on one knee with the ring. She said yes and also gave me a baseball card autographed by Marcus Giles. That was a good night.
What is your favorite dish that Patrice makes? Can I have the recipe?
My favorite dish that Patrice makes is bacon wrapped beef tenderloin and baked potatoes stuffed with cheese, onions, and mushrooms.
Recipe: Wrap meat in meat. Take potato and put cheese, onions, and mushrooms in it. Patrice can probably give you the real one.
Do you like Target?
Target is okay. I like it best when Diet Dr. Pepper is on sale.
Do you like Chick-fil-A?
Yes, I love it every bit as much as Patrice. I get a #1, no pickle, value sized with Diet Dr. Pepper. And of course Chick-fil-A sauce, which I have you guys to thank for.
What is your favorite sport? Who is your favorite pro and college team?
What an excellent question. Living on Tobacco Road, I would have to say that basketball is my favorite sport. I am also a huge fan of baseball and football. My favorite college team is Wake Forest and my favorite pro team is the Atlanta Braves.
What is your favorite ice cream flavor?
Edy’s Girl Scouts Somoas Cookie Ice Cream.
What is your most favorite food ever that you swear you could not live without?
Well, my favorite food is probably pizza. I think I could live without it though. The one thing I could not live without is Diet Dr. Pepper. My dentist asked me if I was going to stop drinking it after I had nine cavities one visit. I said no and quit going to that dentist.
Do you use insensitive remarks and/or stares as an opportunity to educate others about EB?
I have not gotten any insensitive remarks yet, but we get a lot of terrible stares. I just stare right back. If we are outside, I make sure to take off my sunglasses so the person knows I am staring at them. I know it’s bad. I am working on it.
If you could give Jonah one pieces of advice to help him in life what would it be?
I tell Jonah every time that I am dressing him that we are putting his pants on one leg at a time just like everybody else. It is important that he realizes that he is no different than anyone else, and can still do anything that he sets his mind to, but won’t be given anything either. He could be a missionary who brings people to Christ or he could be a doctor that finds a cure for EB, but he will have to work for it. He may be physically limited, but the power of his heart, soul and mind are limitless. EB cannot touch any one of these things.
**************************************
Don't miss the post below if you'd like a Jonah update.
another day, another update
Jonah finally slept well last night... the first time in a while, and I think he would have slept all night, but we got him up for a feeding. He went down around 9, went right back to sleep after his feeding, and slept until about 7:30 this morning. It's my night tonight, so we'll see how it goes. Unfortunately the six and a half hours of sleep I got last night didn't make up for many many days of sleep deprivation. I told some people today that, because he only eats when he sleeps, I don't get a break unless he goes down for a real nap. His little catnaps I spend shoving a bottle down his throat. And at least half the time, after he's finished eating, I go to lay him down, and his eyes pop open, and he's all done. But today he slept for two hours so that was great!
We took him to the doctor this morning because I was afraid he might have an ear infection. Since he hasn't been eating or sleeping well, I was getting a little worried, and then he started messing with his left ear the last couple days so I just wanted to be sure. But no ear infection. I guess he's just discovered his ears. He did get his first H1N1 shot but will have to have his follow-up shot in four weeks. I hate that we might have a hospitalization before he gets fully vaccinated.
Hospitalization... YUCK! Although there are countless benefits of the g-tube, and I'll probably think it was a great decision, the idea of another hospital stay, intubation, and surgery make me shudder. I spent all nap time today researching surgery tips, anesthesia tips, and g-tube info for EB kids. It's overwhelming... everything from simple things like having a pulse-ox (you remember what a disaster that was in the NICU, right?) and taking his blood pressure to the big things like intubation and surgery technique require major modifications. What if I don't mention something? What if a nurse comes in while I'm sleeping and handles him incorrectly? What if they insist on taking all his bandages off while they do surgery?
Answer: I will kill someone.
I'm not kidding. Let's just say I'm not still teaching high school for a reason. Someone was going to get hurt, and it wasn't going to be me. I have a lot of inner rage. What can I say? Mishandling Jonah brings out my inner Roseanne. And I kinda like it.
All of that to say that unless we have a miraculous turn around in the next week or so (he only took 16 oz today), we are getting the g-tube.
Sigh.
He did take an ounce of yogurt today AND an ounce of squash with cinnamon and OPENED HIS MOUTH for almost every bite. What a champ!
I keep saying things like, "No pressure Jonah, but if you don't start eating you are going to have to have a tube put down your throat and have surgery and be in the hospital and and have a feeding tube put in your belly and give your Mom a panic attack. But no pressure or anything."
My hair is falling out like crazy (I thought it was a post-pregnancy shed, but now I'm wondering if it's stress related), and Matt's getting gray hairs in his eyebrows.
We're going to be completely gray headed and/or bald by the time we're 29. Sexy.
(He's about to finish up answering his questions, so look for that post comin' up soon!)
We took him to the doctor this morning because I was afraid he might have an ear infection. Since he hasn't been eating or sleeping well, I was getting a little worried, and then he started messing with his left ear the last couple days so I just wanted to be sure. But no ear infection. I guess he's just discovered his ears. He did get his first H1N1 shot but will have to have his follow-up shot in four weeks. I hate that we might have a hospitalization before he gets fully vaccinated.
Hospitalization... YUCK! Although there are countless benefits of the g-tube, and I'll probably think it was a great decision, the idea of another hospital stay, intubation, and surgery make me shudder. I spent all nap time today researching surgery tips, anesthesia tips, and g-tube info for EB kids. It's overwhelming... everything from simple things like having a pulse-ox (you remember what a disaster that was in the NICU, right?) and taking his blood pressure to the big things like intubation and surgery technique require major modifications. What if I don't mention something? What if a nurse comes in while I'm sleeping and handles him incorrectly? What if they insist on taking all his bandages off while they do surgery?
Answer: I will kill someone.
I'm not kidding. Let's just say I'm not still teaching high school for a reason. Someone was going to get hurt, and it wasn't going to be me. I have a lot of inner rage. What can I say? Mishandling Jonah brings out my inner Roseanne. And I kinda like it.
All of that to say that unless we have a miraculous turn around in the next week or so (he only took 16 oz today), we are getting the g-tube.
Sigh.
He did take an ounce of yogurt today AND an ounce of squash with cinnamon and OPENED HIS MOUTH for almost every bite. What a champ!
I keep saying things like, "No pressure Jonah, but if you don't start eating you are going to have to have a tube put down your throat and have surgery and be in the hospital and and have a feeding tube put in your belly and give your Mom a panic attack. But no pressure or anything."
My hair is falling out like crazy (I thought it was a post-pregnancy shed, but now I'm wondering if it's stress related), and Matt's getting gray hairs in his eyebrows.
We're going to be completely gray headed and/or bald by the time we're 29. Sexy.
(He's about to finish up answering his questions, so look for that post comin' up soon!)
Thursday, October 22, 2009
jonah update
Just a quick update tonight -
Jonah has struggled again today, but it was a slight improvement over yesterday. I'm not sure his total ounces, because Matt's feeding him now as I type this up in his nursery. I don't think he'll hit twenty. He has done better with solids today. He probably ate about two ounces total - apples, yogurt, peas, squash, sweet potatoes, more yogurt, mango. We tried it all. He actually opened his mouth about ten times for the yogurt which was so great! He hasn't opened his mouth for solids yet (except maybe a few isolated bites) until today. True, it was just for the yogurt, but it was something. I was so proud, I kept saying, "Good job, Buddy. You did it!" over and over again, and then he smiled at me, and then I started crying. I know he thinks I'm completely mental. Maybe I am. :)
I did speak with Dr. B, his pediatrician, today, and she agrees with me that things aren't looking good. The home health nurse came and weighed him again today, and it's the third week in a row that he hasn't gained weight. Dr. B is very concerned by this. He's definitely teething (two teeth coming in!), but she said it shouldn't be affecting his eating this much. She had a sense of urgency about her that just validated everything I've already been so concerned about. In a way, it was good to know we're on the same page. On the other hand, I wanted her to tell me how crazy I was, that he's doing great. I knew the truth before she said it though.
So where are we now?
She's working to get his GI appointment moved up (he wasn't scheduled for another one until Dec 2nd), and we're both trying to do research about EB kids and g-tubes. I'm going to email his dermatologist in Chapel Hill and see if there is a pediatric surgeon there who has done a g-tube on an EB child. The EB registry used to be in CH back in the day, so I'm hoping some of those docs will still be there. I think it would make me feel better if it was a surgeon who knew a little something about EB. If it were up to me, when the time came, we'd be on a plane to Cincinnati (where the EB clinic is) to get it done there, but there's no way I'd put Jonah on a plane right now. Talk about germs!
We're still hoping and praying for a miracle, but from talking to Dr. B on the phone today, I'd say we don't feel like we have much time left. I don't want to give it too many more weeks. We're on week four now of no weight gain, and I don't want him to keep falling behind.
He's already on 27 to 30 calorie per ounce formula, and he's still gushing every couple days, so I'm hesitant to put any more junk in his bottles. It seems his tummy can barely handle what we're already giving him.
So anyway, that's where we are. Thank you so much for praying. I attribute today's solids "success" to all the prayers going up for him. Please keep it up! I had moments of feeling peaceful about the whole g-tube thing today and moments of terror and crying. I know God is in control and that my plan isn't His, but it's still alittle lot hard to swallow at times.
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Matt's enjoying working on your questions, but only has time to answer a few at time. He said he should be able to finish them all up this weekend. He's trying to answer all of them, so it's taking a while. :)
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Thank you for praying for Jonah. I don't know why it keeps surprising me how much he's loved and how many prayers are going up on his behalf, but I continue to be amazed. You'd think I'd be used to it by now, but nope. STILL COMPLETELY BLOWN AWAY.
Thank you from the bottom of our hearts.
Jonah has struggled again today, but it was a slight improvement over yesterday. I'm not sure his total ounces, because Matt's feeding him now as I type this up in his nursery. I don't think he'll hit twenty. He has done better with solids today. He probably ate about two ounces total - apples, yogurt, peas, squash, sweet potatoes, more yogurt, mango. We tried it all. He actually opened his mouth about ten times for the yogurt which was so great! He hasn't opened his mouth for solids yet (except maybe a few isolated bites) until today. True, it was just for the yogurt, but it was something. I was so proud, I kept saying, "Good job, Buddy. You did it!" over and over again, and then he smiled at me, and then I started crying. I know he thinks I'm completely mental. Maybe I am. :)
I did speak with Dr. B, his pediatrician, today, and she agrees with me that things aren't looking good. The home health nurse came and weighed him again today, and it's the third week in a row that he hasn't gained weight. Dr. B is very concerned by this. He's definitely teething (two teeth coming in!), but she said it shouldn't be affecting his eating this much. She had a sense of urgency about her that just validated everything I've already been so concerned about. In a way, it was good to know we're on the same page. On the other hand, I wanted her to tell me how crazy I was, that he's doing great. I knew the truth before she said it though.
So where are we now?
She's working to get his GI appointment moved up (he wasn't scheduled for another one until Dec 2nd), and we're both trying to do research about EB kids and g-tubes. I'm going to email his dermatologist in Chapel Hill and see if there is a pediatric surgeon there who has done a g-tube on an EB child. The EB registry used to be in CH back in the day, so I'm hoping some of those docs will still be there. I think it would make me feel better if it was a surgeon who knew a little something about EB. If it were up to me, when the time came, we'd be on a plane to Cincinnati (where the EB clinic is) to get it done there, but there's no way I'd put Jonah on a plane right now. Talk about germs!
We're still hoping and praying for a miracle, but from talking to Dr. B on the phone today, I'd say we don't feel like we have much time left. I don't want to give it too many more weeks. We're on week four now of no weight gain, and I don't want him to keep falling behind.
He's already on 27 to 30 calorie per ounce formula, and he's still gushing every couple days, so I'm hesitant to put any more junk in his bottles. It seems his tummy can barely handle what we're already giving him.
So anyway, that's where we are. Thank you so much for praying. I attribute today's solids "success" to all the prayers going up for him. Please keep it up! I had moments of feeling peaceful about the whole g-tube thing today and moments of terror and crying. I know God is in control and that my plan isn't His, but it's still a
****************************************
Matt's enjoying working on your questions, but only has time to answer a few at time. He said he should be able to finish them all up this weekend. He's trying to answer all of them, so it's taking a while. :)
****************************************
Thank you for praying for Jonah. I don't know why it keeps surprising me how much he's loved and how many prayers are going up on his behalf, but I continue to be amazed. You'd think I'd be used to it by now, but nope. STILL COMPLETELY BLOWN AWAY.
Thank you from the bottom of our hearts.
Wednesday, October 21, 2009
prayer request
I'm feeling weary and frustrated tonight. Jonah's feeding issues are becoming worse, and things are starting to feel insurmountable. It's no secret that feedings are a struggle and that he only eats when he sleeps, but it's getting worse. I'm having to fight him even harder for his 9 am feeding, he'll barely eat three ounces for his 1 pm feeding, he typically won't eat again until 8 pm, and even then, it's SUCH a struggle. He only took two and a half ounces tonight before bed. And last night, he wouldn't eat at all overnight. He just screams and screams. And today was not the only bad day. It's been going more and more downhill. He only ate 15 ounces today.
I'm praying my heart out that something changes and fast. I do not want a g-tube, but I have to think about what's best for Jonah. I'm out of ideas. I have nothing left. All I know to do is pray.
I know many EB kids have g-tubes. But I also know that a g-tube means surgery. I know that a g-tube means yet another blistering sore on my child. I know that it is yet another site that will infect easily. And it scares me.
I'm tired of having to make these hard decisions. I'm tired of him (and me) having to struggle at every feeding. I'm tired of feeling scared that whatever doctor has to do this operation (if it comes to it) may not handle him right or might not take the right precautions. I'm afraid someone will mess up, and Jonah will pay the price.
I've been in tears tonight over all this. I'm out of ideas. I don't want advice. I don't want comparisons. Jonah just needs prayer. I feel that it's getting out of control rather quickly. We're going to watch what happens over the next week or so, and if things don't get better, we'll have to start talking to his doctors to discuss our options.
Maybe this sounds rash to some of you, but the problem with EB is that once a child falls behind in weight/nutrition, it's almost impossible to get him caught up. So how far do you let it go? The key to EB is nutrition. And unfortunately, the key to nutrition is the g-tube.
Please pray for Jonah. I keep begging God to let him be able to eat. I can't believe that I'm having to pray for that. I'm having to ask God that my child be able to eat... who should have to pray that? I'm just so tired. I've tried everything. I don't know what else to do.
I'm praying my heart out that something changes and fast. I do not want a g-tube, but I have to think about what's best for Jonah. I'm out of ideas. I have nothing left. All I know to do is pray.
I know many EB kids have g-tubes. But I also know that a g-tube means surgery. I know that a g-tube means yet another blistering sore on my child. I know that it is yet another site that will infect easily. And it scares me.
I'm tired of having to make these hard decisions. I'm tired of him (and me) having to struggle at every feeding. I'm tired of feeling scared that whatever doctor has to do this operation (if it comes to it) may not handle him right or might not take the right precautions. I'm afraid someone will mess up, and Jonah will pay the price.
I've been in tears tonight over all this. I'm out of ideas. I don't want advice. I don't want comparisons. Jonah just needs prayer. I feel that it's getting out of control rather quickly. We're going to watch what happens over the next week or so, and if things don't get better, we'll have to start talking to his doctors to discuss our options.
Maybe this sounds rash to some of you, but the problem with EB is that once a child falls behind in weight/nutrition, it's almost impossible to get him caught up. So how far do you let it go? The key to EB is nutrition. And unfortunately, the key to nutrition is the g-tube.
Please pray for Jonah. I keep begging God to let him be able to eat. I can't believe that I'm having to pray for that. I'm having to ask God that my child be able to eat... who should have to pray that? I'm just so tired. I've tried everything. I don't know what else to do.
Tuesday, October 20, 2009
answers, part 3 and "ask matt"
Where do I get my sense of humor?
Both of my parents can have funny moments, although neither of them is known as the “funny guy,” especially not my mom who is, in fact, a gal. Actually, my grandmother (my mom’s mom) had a really sarcastic, sometimes slightly inappropriate sense of humor, which I found hilarious. Maybe I get it from her. If you can learn a sense of humor, I’d say my brother taught me a thing or two about being funny. He’s the most hilarious storyteller I’ve ever known. But he’s also done a lot of really stupid stuff so he has lots of good material (a post on all that coming soon to a blog near you).
Matt strikes us as quiet and reserved. Is this true or is he just as "witty and sarcastic" as you are?
If I were one to use the term LOL (which I’m not), I’d use it here. “Quiet” and “reserved” are definitely not words I would use to describe Matt. “Loud”, “crazy”, “hilariously inappropriate” might be a few terms I’d use. Let me put it this way: he should have been on Broadway, I think, although he says his dream job would be a game show host. He is a lot more private than I am though, and I would definitely describe him as “slow to warm up.”
What kind of early intervention do we have for Jonah? Is OT or PT coming out to work with him?
He is seen, in our home, by a Nutritionist and an Occupational Therapist. We get both of these services through our local CDSA. The OT comes maybe once every other month and checks on his development. He is definitely delayed by several months in his motor skills, but that is to be expected. So far, she’s mainly just observed and shown me a few things we can do to work with him, although I think as he’s get older, we’ll be able to do a few more “exercises.” We may start working with him on the feeding issues, although these will require a lot of mouth manipulation, which worries me as far as blisters are concerned. Either these exercises will have to be greatly modified or we’ll have to pray for the best, because I’m not doing anything that will cause blistering in his mouth. Then you’ve got an issue of not being able to eat, rather than just not wanting to.
What about using honey on Jonah's wounds like Sam does?
I don’t know anything about honey. I thought I might ask around about that, with other EB folks, but it’s not something I plan on trying anytime soon. I wouldn’t want to risk it. Jonah’s dermatologist doesn’t really seem to be into “alternative” treatments (just my perception… not what he’s said). I’d also like to try this stuff called Alwyn Cream which many of the EB parents swear by.
Could you do a post from Matt's perspective?
It’s really important to me that I don’t speak for Matt, so I’m going to let him do it for himself. On that note, we’re opening up this post to questions for Matt – so you can know all you’d ever care to know (that he’s actually willing to share) about the man behind the Jonut. You are welcome to ask him anything you’d like, but he reserves the right to NOT answer anything he doesn’t want to. What can I say? It’s my blog, and he’ll delete if he wants to.
Both of my parents can have funny moments, although neither of them is known as the “funny guy,” especially not my mom who is, in fact, a gal. Actually, my grandmother (my mom’s mom) had a really sarcastic, sometimes slightly inappropriate sense of humor, which I found hilarious. Maybe I get it from her. If you can learn a sense of humor, I’d say my brother taught me a thing or two about being funny. He’s the most hilarious storyteller I’ve ever known. But he’s also done a lot of really stupid stuff so he has lots of good material (a post on all that coming soon to a blog near you).
Matt strikes us as quiet and reserved. Is this true or is he just as "witty and sarcastic" as you are?
If I were one to use the term LOL (which I’m not), I’d use it here. “Quiet” and “reserved” are definitely not words I would use to describe Matt. “Loud”, “crazy”, “hilariously inappropriate” might be a few terms I’d use. Let me put it this way: he should have been on Broadway, I think, although he says his dream job would be a game show host. He is a lot more private than I am though, and I would definitely describe him as “slow to warm up.”
What kind of early intervention do we have for Jonah? Is OT or PT coming out to work with him?
He is seen, in our home, by a Nutritionist and an Occupational Therapist. We get both of these services through our local CDSA. The OT comes maybe once every other month and checks on his development. He is definitely delayed by several months in his motor skills, but that is to be expected. So far, she’s mainly just observed and shown me a few things we can do to work with him, although I think as he’s get older, we’ll be able to do a few more “exercises.” We may start working with him on the feeding issues, although these will require a lot of mouth manipulation, which worries me as far as blisters are concerned. Either these exercises will have to be greatly modified or we’ll have to pray for the best, because I’m not doing anything that will cause blistering in his mouth. Then you’ve got an issue of not being able to eat, rather than just not wanting to.
What about using honey on Jonah's wounds like Sam does?
I don’t know anything about honey. I thought I might ask around about that, with other EB folks, but it’s not something I plan on trying anytime soon. I wouldn’t want to risk it. Jonah’s dermatologist doesn’t really seem to be into “alternative” treatments (just my perception… not what he’s said). I’d also like to try this stuff called Alwyn Cream which many of the EB parents swear by.
Could you do a post from Matt's perspective?
It’s really important to me that I don’t speak for Matt, so I’m going to let him do it for himself. On that note, we’re opening up this post to questions for Matt – so you can know all you’d ever care to know (that he’s actually willing to share) about the man behind the Jonut. You are welcome to ask him anything you’d like, but he reserves the right to NOT answer anything he doesn’t want to. What can I say? It’s my blog, and he’ll delete if he wants to.
Monday, October 19, 2009
you know you're a stay at home/new parent when...
You know you are a Stay-At-Home/New Parent when...
... so it's ALL GOOD.
10. A trip "all the way across town" to the mall sounds as challenging as a trip across the country.
9. You hear yourself whining and saying things like, "Oh man. This is the exact same episode of Wonder Pets they showed yesterday," and "Ugh. I hate Puzzle Time."
8. You have a very strong preference between Steve and Joe from Blue's Clues.
7. Breakfast consists of a Diet DP and a Fudge Round. Lunch is some Honey BBQ Fritos and the Halloween candy your husband encouraged you to get way early (bad idea), and dinner is something somebody else better be figuring out because a certain little someone only slept twenty minutes total that day.
6. Movie watching is a lost art because sleep is just more important. Although Netflix only costs $9.60 a month, you've had the same movie for four months. The cost of that one movie alone is almost $40 and counting.
5. You are so used to having to pee with the door open, you have to be really careful when company comes over that you don't share a little too much.
4. Eco-Rangers, Moose and Zee, from Noggin are the ones who've convicted you to be more energy efficient.
3. Your friend says, "Have you heard that new song, __________?" and you think to yourself that unless it's sung by The Backyardigans, you most certainly have not heard it.
2. You have regular conversations with your dog, and of the two of you, he is definitely the more interesting one.
1. You get to hang out with this guy all day...
... so it's ALL GOOD.
podcast is ready
Just wanted to let you know the podcast of the radio show is up now.
http://encouragementcafe.com/podcasts.php
http://encouragementcafe.com/podcasts.php
Sunday, October 18, 2009
another weekend - by: jonah
Hey Everybody!
Mom says you guys love it when I take over her blog, so here I am. Aren't you so happy? That picture up there is from Friday night. Mommy, Daddy, Kathryn, and I went to Ham's to celebrate Kathryn's birthday. It was this past Thursday. Mommy says to tell you I was a complete nightmare. But I'm not going to tell you that. Let's just say there's a reason I don't have a picture of me and Kathryn to show you. It could be because I cried my eyes out the whole time we were there and nothing Mommy did could make me happy. I couldn't rightly say.
Then, on Saturday, Mommy left me with Daddy for four whole hours. Can you believe she would do something like that? Who does she think she is? Her own person or something?
But anyway, she got to go out to lunch with a friend and then she went to a radio station and got to do a radio show. I'm pretty sure she talked about me the whole time, so I guess I'll forgive her for leaving me.
Here she is with the two ladies who hosted the show.
Boo Mama joined them on the phone, as well as a lady named Renee who has a blog called budgetsavingmom.com. Mommy says she has a blog about saving lots of money and coupon and rebate tips. I said, "What's a rebate?" She said, "Nevermind."
Mommy felt like it went really well, but she was nervous at first. She said she got really nervous when Ms. Luann said, "Hurry! Put on your headphones! We're in the Cone of Silence." Mommy said, "What the heck is a Cone of Silence?" I told her it's not nice to say heck.
And this is me at the Chicken Stew.
I know. I know. I'm adorable. Mommy loves her little Russian Baby.
You guys don't know what a Chicken Stew is??? Don't feel bad. Saturday was my first one. Well, Mommy says I went last year when I was in her tummy (and she was mentally unstable), but I don't remember that.
Anyway, allow me to educate you.
From Wikipedia:
Southern chicken stew is a traditional dish from North Carolina. It is a type of stew consisting of parboiled whole chicken in a cream or milk based broth, butter and seasoned with salt, pepper and other ingredients. Traditionally, the stew is served in the late fall and winter months. Often the term "chicken stew" refers to an event or gathering where the dish is served.
Recipes for southern chicken stew vary slightly from person to person, but it is usually made by first cooking a whole chicken by boiling or parboiling, allowing a rich broth to form. The chicken is then removed from the pot and the meat is pulled from the bones or cut off with a knife. The skin, bones and fat are removed as well. Sometimes boneless, skinless chicken breasts are used instead of a whole chicken. A thickening of flour and milk or cream is made and added to the broth. The chicken is then added back into the liquid along with salt, pepper and butter or margarine. Various other ingredients may be added to the stew according to local tradition; a more common addition is varying amounts of Texas Pete hot sauce.[1]
The stew varies in color from white to pale yellow, depending on the amount of butter or margarine used. It can vary in thickness from very thin and soup-like to thick and creamy. Saltine crackers are commonly served with chicken stew, either on the side or crumbled into the bowl.
Because of its low cost of preparation and reputation as a local comfort food, chicken stew is often served at large social gatherings such as church fellowships, family reunions and community fundraisers. It is a tradition at these gatherings to prepare the stew in a large cast iron or stainless steel pot, often outdoors over an open fire. Bowls of stew are sometimes complimented with coleslaw, rice or grilled cheese sandwiches. In North Carolina, "chicken stews" are usually held during the colder seasons, with most events occurring September through December.
So now you know. Mom said she had NO IDEA it was mostly a North Carolina thing. She says she sure is glad she lives here. She disagrees with the above statement that it can be thin like soup. That is totally wrong, she says. She thinks it should always be really milky and creamy. Mom also says that Chicken Stew is more than just a food. It's so good, it's the name of the event too. You don't say, "I'm going to a Taco" or "Tomorrow night we're going to a Pizza." BUT you DO say, "This Saturday we're going to our annual Chicken Stew." It's the dish itself, bonfires, cold weather, hanging out with friends outdoors, and making Smores (PLEASE tell me you have experienced Smores!). It's a Fall Tradition.
Here are my best bud, Jude, and me.
We are adorable. Jude is the coolest. Mom is so happy she finally got Jude to laugh at her. She has been trying for his entire 11 month existence to get him to think she's hilarious. Before Saturday she liked to refer to him as Jude the Unimpressed. But now, he thinks she's pretty funny too. I had to have a little talk with him. It worked. I think he was intimidated by the hat. You just can't argue with the ears.
These are my friends, Mason and Maddie.
They are both wonderful. Mason is especially in love with me, and he always comes up to me and says, "Hey Baby Jonah." He prays for me every day. I can't wait til I'm old enough to play over at his house.
Here are me and Ms. Gina.
And finally, here is my mom and me. This is after she switched to my other hat because the blue one wasn't staying on well. This one is a really cute one that Cousin Todd and Cousin Keila gave me over the summer. Mom thought it was the cutest thing ever.
Mom says you guys love it when I take over her blog, so here I am. Aren't you so happy? That picture up there is from Friday night. Mommy, Daddy, Kathryn, and I went to Ham's to celebrate Kathryn's birthday. It was this past Thursday. Mommy says to tell you I was a complete nightmare. But I'm not going to tell you that. Let's just say there's a reason I don't have a picture of me and Kathryn to show you. It could be because I cried my eyes out the whole time we were there and nothing Mommy did could make me happy. I couldn't rightly say.
Then, on Saturday, Mommy left me with Daddy for four whole hours. Can you believe she would do something like that? Who does she think she is? Her own person or something?
But anyway, she got to go out to lunch with a friend and then she went to a radio station and got to do a radio show. I'm pretty sure she talked about me the whole time, so I guess I'll forgive her for leaving me.
Here she is with the two ladies who hosted the show.
Boo Mama joined them on the phone, as well as a lady named Renee who has a blog called budgetsavingmom.com. Mommy says she has a blog about saving lots of money and coupon and rebate tips. I said, "What's a rebate?" She said, "Nevermind."
Mommy felt like it went really well, but she was nervous at first. She said she got really nervous when Ms. Luann said, "Hurry! Put on your headphones! We're in the Cone of Silence." Mommy said, "What the heck is a Cone of Silence?" I told her it's not nice to say heck.
And this is me at the Chicken Stew.
I know. I know. I'm adorable. Mommy loves her little Russian Baby.
You guys don't know what a Chicken Stew is??? Don't feel bad. Saturday was my first one. Well, Mommy says I went last year when I was in her tummy (and she was mentally unstable), but I don't remember that.
Anyway, allow me to educate you.
From Wikipedia:
Southern chicken stew is a traditional dish from North Carolina. It is a type of stew consisting of parboiled whole chicken in a cream or milk based broth, butter and seasoned with salt, pepper and other ingredients. Traditionally, the stew is served in the late fall and winter months. Often the term "chicken stew" refers to an event or gathering where the dish is served.
Recipes for southern chicken stew vary slightly from person to person, but it is usually made by first cooking a whole chicken by boiling or parboiling, allowing a rich broth to form. The chicken is then removed from the pot and the meat is pulled from the bones or cut off with a knife. The skin, bones and fat are removed as well. Sometimes boneless, skinless chicken breasts are used instead of a whole chicken. A thickening of flour and milk or cream is made and added to the broth. The chicken is then added back into the liquid along with salt, pepper and butter or margarine. Various other ingredients may be added to the stew according to local tradition; a more common addition is varying amounts of Texas Pete hot sauce.[1]
The stew varies in color from white to pale yellow, depending on the amount of butter or margarine used. It can vary in thickness from very thin and soup-like to thick and creamy. Saltine crackers are commonly served with chicken stew, either on the side or crumbled into the bowl.
Because of its low cost of preparation and reputation as a local comfort food, chicken stew is often served at large social gatherings such as church fellowships, family reunions and community fundraisers. It is a tradition at these gatherings to prepare the stew in a large cast iron or stainless steel pot, often outdoors over an open fire. Bowls of stew are sometimes complimented with coleslaw, rice or grilled cheese sandwiches. In North Carolina, "chicken stews" are usually held during the colder seasons, with most events occurring September through December.
So now you know. Mom said she had NO IDEA it was mostly a North Carolina thing. She says she sure is glad she lives here. She disagrees with the above statement that it can be thin like soup. That is totally wrong, she says. She thinks it should always be really milky and creamy. Mom also says that Chicken Stew is more than just a food. It's so good, it's the name of the event too. You don't say, "I'm going to a Taco" or "Tomorrow night we're going to a Pizza." BUT you DO say, "This Saturday we're going to our annual Chicken Stew." It's the dish itself, bonfires, cold weather, hanging out with friends outdoors, and making Smores (PLEASE tell me you have experienced Smores!). It's a Fall Tradition.
Here are my best bud, Jude, and me.
We are adorable. Jude is the coolest. Mom is so happy she finally got Jude to laugh at her. She has been trying for his entire 11 month existence to get him to think she's hilarious. Before Saturday she liked to refer to him as Jude the Unimpressed. But now, he thinks she's pretty funny too. I had to have a little talk with him. It worked. I think he was intimidated by the hat. You just can't argue with the ears.
These are my friends, Mason and Maddie.
They are both wonderful. Mason is especially in love with me, and he always comes up to me and says, "Hey Baby Jonah." He prays for me every day. I can't wait til I'm old enough to play over at his house.
Here are me and Ms. Gina.
Did you know that Ms. Gina called into the radio show and made Mommy cry on the air? She is so sweet. She loves me a lot too.
And finally, here is my mom and me. This is after she switched to my other hat because the blue one wasn't staying on well. This one is a really cute one that Cousin Todd and Cousin Keila gave me over the summer. Mom thought it was the cutest thing ever.
Well, I better go now. It's waaaay past my bedtime. Mom says she'll have to teach you guys the right way to make sweet tea in another post. She says I can't talk about that because I'm not allowed to use the stove yet... or drink tea, for that matter.
But she says to tell you to seek out a North Carolinian and have yourself a good ol' Chicken Stew before Spring. You might just decide you want to move here. You'll be putting your house on the market by April. Consider this fair warning.
Oh yeah, we made it to church this morning. HOORAY! I made it through all the beginning songs AND about ten minutes of the sermon before I got tired and Mom had to take me out in the lobby. And it went really well, overall, until I had a big ol' gusher all over myself, the chair in the lobby, and Mommy's dress pants. Luckily we were going straight home afterwards, so it didn't really matter. Mom says it was TOTALLY worth it... just what the doctor Jesus ordered. :)
Saturday, October 17, 2009
quick saturday wrap up
I'm very tired tonight and wanting to get as much sleep as possible (it's my night to be up), but we've had a great day. Lots of stuff to post about later.
The radio show went really well, and I had a great time. The podcast isn't up yet, but I'll let you know when it's available.
Matt took care of Jonah from 12 to 4 today, and he did a great job - gusher and a poopy diaper and all. I got to go out to lunch with my friend, Sandy, before the radio program, and it was fun, relaxing, and just what I needed. Mmmmm... Chili's Cajun Chicken Pasta. Divine.
Tonight we went to a chicken stew at our friends', Greg and Monica's, house. It was with all our Sunday School peeps who(m?) we haven't seen in forever. I miss them so much, and it was great to hang out with them again. Do you northerners have chicken stews? If not, you are DEFINITELY missing out. It would be so hard - no chicken stews AND no sweet tea...
We are determined to make it to church tomorrow. I'm needing the good night's rest to get me through the tough day tomorrow if we do get to go. A late dressing change during Jonah's usual nap time could equal a minor meltdown. We will not be deterred, friends! ONWARD!
The radio show went really well, and I had a great time. The podcast isn't up yet, but I'll let you know when it's available.
Matt took care of Jonah from 12 to 4 today, and he did a great job - gusher and a poopy diaper and all. I got to go out to lunch with my friend, Sandy, before the radio program, and it was fun, relaxing, and just what I needed. Mmmmm... Chili's Cajun Chicken Pasta. Divine.
Tonight we went to a chicken stew at our friends', Greg and Monica's, house. It was with all our Sunday School peeps who(m?) we haven't seen in forever. I miss them so much, and it was great to hang out with them again. Do you northerners have chicken stews? If not, you are DEFINITELY missing out. It would be so hard - no chicken stews AND no sweet tea...
We are determined to make it to church tomorrow. I'm needing the good night's rest to get me through the tough day tomorrow if we do get to go. A late dressing change during Jonah's usual nap time could equal a minor meltdown. We will not be deterred, friends! ONWARD!
Friday, October 16, 2009
answers, part 2
What are our specific needs at this point?
How are Jonah's hands doing now that they are completely unwrapped? Can he pick up and play with toys without hurting himself?
Ugh... I hate answering this question, although it touches my heart so much that you'd be willing to ask it. I'd say we are stable as of now financially although that has so much to do with you and your generous donations and magnet buying. Magnets are still for sale (see my sidebar) and Pinedale Christian Church in Winston-Salem still has an account set up for us too. Just put Jonah's name in the for line. Jonah's supplies are mostly covered by insurance although there are months we still get a $600 -$700 bill for them. (They cost anywhere from three to seven thousand each month before insurance.) As far as supplies we have to buy over the counter, we always need Aquaphor, alcohol swabs, Chux (blue waterproof) pads, and Polysporin. Thanks for asking, but please know that we don't EXPECT anything. Oh yeah, now would be a good time to say that I've used many of the Similac coupons you've sent, but I think we're good to go for now. Partly I can't use them fast enough and some of them are expiring before I can use them and partly I'm buying formula on Ebay a lot (which I would recommend). If I can find an auction with free shipping, I can typically get his Alimentum for $12-15 a can rather than $25 ($20 with a coupon) at the store. Just a nifty little tip for ya!
How are Jonah's hands doing now that they are completely unwrapped? Can he pick up and play with toys without hurting himself?
See for yourself.
So in a way, not so good. But it could be so much worse. The very first time I tried unwrapping his hands (soon after we came home from the hospital), they swelled up completely and blisters encased many of his fingers. So we are thankful for this! They have new blisters every day. Sometimes we have a great day where I only have to drain one or two little ones, and sometimes it's really bad and I have to drain ten to twelve blisters... some of them being the big, angry blood blisters.
He can grab (still working on this one) and play with toys, but we try to keep them on the soft side. He has just started shaking things and patting things within the last couple weeks, so we are excited to see that. He is still unable to hold heavy things. I may or may not have let him attempt to hold my cell phone. It may or may not have dropped on his face. I couldn't rightly say.
I don't see a direct connection between holding/playing with toys and increased blistering. I think he does most of it by rubbing his hands together, rubbing his hands on us and things around him, and chewing on his fingers.
Will Jonah's limbs and body always have to be bandaged even as he gets older?
We are not sure, but unless something changes he will have to bandaged his whole life. Maybe he'll get a little tougher as he grows, but there is no way to know. Every case of EB is different. The non-lethal form of Junctional (which we think he has) is labeled a "moderate" type of EB, but Jonah, at this point, seems to lean toward a more severe moderate. Any part of him that's not bandaged blisters. And his feet chronically blister despite being wrapped. We'll just have to wait and see. But we are praying for a miracle and have faith that one is coming!What is the one thing I'd want people to know about Jonah's EB?
I guess I wish people knew what it was without me having to explain it. But if I can't have that, I just wish they knew that 1) we didn't hurt him and 2) he's not contagious. I think that would cut down on a lot of the dirty looks. And even though they make me mad, I worry more for him as he gets older and starts noticing the staring himself.What is the one thing I want people to know about Jonah that has nothing to do with his EB?
Man, I could write a book on this one. I guess I want them to see him for who he is. He has such a sweet, content personality, and he is soooo funny. His laugh is THE SWEETEST THING on the planet. I often laugh so hard at him laughing I can't continue doing what was making him laugh in the first place.Do we plan to have more kids and how does the EB gene affect that?
We do plan on having more kids (as much as you can "plan" something like that), although we do not plan on having any other kids that are genetically ours. JEB is a recessive disorder, so Matt and I are both carriers. That means there is only a 25% chance that any child we have will have EB. However, we are two for two, and unless God has a different plan, we won't risk it. EB can be isolated only after an egg is fertilized and since we feel the baby is already alive at that point, "crafting" an EB-free baby is not really an option for us. We are considering both embryo adoption and traditional adoption. I'm leaning more toward embryo adoption (where IVF couples are finished having kids and donate their remaining frozen embryos to adopting couples... I would be able to carry, deliver, and breastfeed the baby). With traditional adoption, I am so scared that the birth mom or dad would change their minds. I would rather experience the heartache of the embryo transfer not "taking" over bringing a baby home, only to have him/her taken away. I don't know. We have a lot of praying and thinking to do. I'm ready to start that thinking now (just in case whatever process we choose takes a long time), but I don't think Matt's quite there yet. (He's still rejoicing that he finally has his not-pregnant - therefore a little more sane - wife to hang out with for a while. :) ) The only fear I have with embryo adoption is that typically they would implant two to three embryos (I think there's only a 30% chance that ONE of the embryos would result in pregnancy), which means there's always the possibility of multiples. Don't get me wrong, if we end up pregnant with twins someday, I will count my (double) blessings and be totally pumped about it, but imagining (right now) having an EB toddler and twins makes me want to pass out a little bit.What do we do for Jonah throughout the day? How is his general care modified for EB?
I get Jonah up in the morning and immediately change his diaper and lance any blisters on his hands and face that have popped up or refilled overnight. Then, I let him play in his high chair while I eat breakfast, check email, read blogs etc. I then attempt to feed him some oatmeal with fruit or yogurt with oatmeal which he mostly refuses. I then get his bottles ready and spend from about 9-10:00 feeding him and watching Regis and Kelly. My help arrives around 10, and we try to start dressing change by 10:30. Bath and dressing change take about two hours (depending on how many new blisters he has on his feet), and then I feed him again afterwards. Then I try to get him down for a nap, but typically he'll only sleep for twenty minutes or so. After he wakes up we play and hang out until he starts acting tired again. So I try to take advantage of the sleepy time to work in another bottle (he's still only eating if he's asleep), and then try for a nap again. Sometimes it works. Sometimes it doesn't. Matt usually gets home around 5, we eat dinner, attempt feeding Jonah solids again, set up for tomorrow's dressing change, and hang out with Baby J until we start the bedtime routine around 7:30 or 8. We fix his bottles (which always have different meds in them), change his diaper, and lance any new blisters on his hands and face that have popped up since dressing change. We Aquaphor his face and hands before bed. We feed Jonah and read The Chronicles of Narnia until he finishes his bottle. He's asleep by then and we put him in bed.
We can pretty much do everything normally but just more gently. He obviously can't wear disposable diapers, so we mostly use FuzziBunz (exciting diaper news coming soon!). I have to put a disposable with the elastic cut off inside the cloth diaper, since my cloth are no longer absorbent. Aquaphor + Cloth Diapering = DISASTER! Now I'm using Northern Essence Diaper Salve which is supposedly safe for cloth diapers, but it's too late. They're toast. I can use wet wipes on his bum and face as long as they are plenty wet and I don't rub. It's more of a gentle wiping off than a rub. Then I lather his bum up with the diaper salve (every time) and diaper him up. We have to be careful picking him up. You have to scoop him up with one hand under his back and the other under his bum. Picking him up under his arms will cause friction under his armpits. When he spits up, we blot instead of wipe. We put Aquaphor on his bottle nipples to help reduce friction in his mouth.
Can we hug and snuggle him as much as we want? Can his skin handle hugging and rubbing through the bandages?
Besides his feet, his skin is fairly durable if bandaged. So yes, I hug and kiss all over him all the time. I do rub his back although I'm not sure if he can even feel it. Basically it's the picking up thing that's different... and just making sure you move him carefully when changing positions (lying back in my arms to on my shoulder), to make sure you don't rub his skin at all.
I'm still working on the rest of your questions and will get the final installment up in the next couple days. Thanks for caring enough to ask!
Hope you are having a great Friday.
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