Little D is in surgery.
As Winnie the Pooh once said, "It's like déjà vu all over again!"
The lady who checked us in recognized us.
Several of the nurses recognized us.
We have the same anesthesiologist.
Same surgeon, of course.
We know our way around the day surgery area which is helpful when you are flying around like an airplane because your surgery is later than expected :-D
They started an hour late, so our scheduled 3 hours is now from 830am to 1130am.
I am not holding my breath that doc will be done in that amount of time. No prob, doc, take your time!
I will keep you posted.
Pray this isn't as painful for David as we are expecting...
(((hugs))),
Chris
I will praise you forever, O God, for what you have done. I will trust in your good name in the presence of your faithful people. Psalm 52:9
Showing posts with label Medical. Show all posts
Showing posts with label Medical. Show all posts
Friday, June 1, 2012
Thursday, May 31, 2012
Tomorrow is David's Surgery Day!!!
Can I get a WOOT WOOT! up in here!!!
We are packed.
We are not coughing.
We are ready.
We have been talking about surgery all week.
From inside our shiny new bubble wrap, of course...
It is sorta freaky how much David understands about what is going to happen.
He will tell us how we will get up early when it is still dark, then Mama will take him to the hospital and Baba will take care of Josh and Sammy. And then he will put on the hospital pajamas. And then he will put the mask on his face. And then he demonstrates breathing deeply and falling asleep. And then he says when he wakes up, doc will be done fixing his mouth and it is over! And then he says Mama will stay with him all the time, and we will sleep for one night at the hospital (oh man I hope it is only one~insert a prayer here), and when doctor says we can go home then we go home! He knows he has to drink before we go home, and he tells me all the choices he will have at the hospital. He says he can have apple juice, or popsicles, or applesauce, or Jell-O. And he says he wants to ride around the hallways at the hospital in the wagon just like Sammy did. He tells me he won't be able to walk (Sammy couldn't stand up right away because his IV was in his foot). And he says he will be able to talk better and drink from a straw and blow a horn after his surgery.
Freaky, eh?
We'll see if he sleeps at all tonight.
Please pray for the doctors to sleep well tonight.
Please pray for God to guide our surgeon's hands tomorrow.
Please pray for David's little body to handle the surgery well and for his palate to be closed during this one surgery.
And pray that his palate stays together after surgery, and that little David heals quickly.
Do we need anything else?
Just prayers. Thanks.
(((hugs))),
chris
People were also bringing babies to Jesus for him to place his hands on them. When the disciples saw this, they rebuked them. But Jesus called the children to him and said, “Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these. Truly I tell you, anyone who will not receive the kingdom of God like a little child will never enter it.” Luke 18:15-17
We are packed.
We are not coughing.
We are ready.
We have been talking about surgery all week.
From inside our shiny new bubble wrap, of course...
It is sorta freaky how much David understands about what is going to happen.
He will tell us how we will get up early when it is still dark, then Mama will take him to the hospital and Baba will take care of Josh and Sammy. And then he will put on the hospital pajamas. And then he will put the mask on his face. And then he demonstrates breathing deeply and falling asleep. And then he says when he wakes up, doc will be done fixing his mouth and it is over! And then he says Mama will stay with him all the time, and we will sleep for one night at the hospital (oh man I hope it is only one~insert a prayer here), and when doctor says we can go home then we go home! He knows he has to drink before we go home, and he tells me all the choices he will have at the hospital. He says he can have apple juice, or popsicles, or applesauce, or Jell-O. And he says he wants to ride around the hallways at the hospital in the wagon just like Sammy did. He tells me he won't be able to walk (Sammy couldn't stand up right away because his IV was in his foot). And he says he will be able to talk better and drink from a straw and blow a horn after his surgery.
Freaky, eh?
We'll see if he sleeps at all tonight.
Please pray for the doctors to sleep well tonight.
Please pray for God to guide our surgeon's hands tomorrow.
Please pray for David's little body to handle the surgery well and for his palate to be closed during this one surgery.
And pray that his palate stays together after surgery, and that little David heals quickly.
Do we need anything else?
Just prayers. Thanks.
(((hugs))),
chris
People were also bringing babies to Jesus for him to place his hands on them. When the disciples saw this, they rebuked them. But Jesus called the children to him and said, “Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these. Truly I tell you, anyone who will not receive the kingdom of God like a little child will never enter it.” Luke 18:15-17
Wednesday, May 23, 2012
Rescheduled
David's surgery is rescheduled! Yahoo!
He will have his surgery at the end of next week. It will be sort of deja-vu-ish... Same time, same surgeon, same anesthesiologist, same surgical team at the hospital, same place--day surgery center. Except it will be just David and I heading down for surgery so Jason can take care of the other two boys. We think it will be too soon to leave Sammy with someone else for a long period of time, since he will only be two weeks post-op.
So now we pray that David totally gets rid of his cough and stays healthy.
(That's deja-vu-ish too, eh?)
If you are looking for us over the next week and a half, we'll be right here in our bubble.
(((hugs))),
chris
And now, just as you accepted Christ Jesus as your Lord, you must continue to follow him. Let your roots grow down into him, and let your lives be built on him. Then your faith will grow strong in the truth you were taught, and you will overflow with thankfulness. Colossians 2:6-7
Tuesday, May 22, 2012
Recovering
Before this surgery, a friend of mine said she hoped the recovery this time would be better than we expect. I heard her, and thought to myself, "Ya, right. We have been through this before. We know how it goes."
But I guess we never went through a lip repair-only surgery yet.
It has been a little better. Just goes to show you where me and my bad attitude got me.
It is still really hard to see your kid in so much pain. It has to be unbelievably hard to be the kid. Sammy's whole face swelled up so he couldn't smile (not that he would want to yet) and could hardly open his mouth. He is on a soft diet which is really nice because we can feed him regular food and he can actually get filled up.
Liquid diets suck, my friends...
So since he can't open his mouth much, we give him his liquids (drinks, soups, smoothies) with a syringe. It hurts to open wide enough even to take a regular cup. We use a tiny baby spoon to feed him soft foods like yogurt and mashed potatoes and mac 'n cheese. Any other spoons are too wide and it hurts him to open up that much. Sammy is our meat-eater ~ I swear the kid could eat meat all day long if we let him. Yesterday we cut up a hot dog and a piece of chicken in tiny little pieces about the size of peas and fed it to him. He was so happy!
So it has been a little better this time around, but we are still dealing with "stuff". Like being helicopter-parent worrying about anything bumping Sammy's face for fear the stitches will split. And if the stitches split, his face splits. Scary stuff. I feel like we are constantly barking at the boys, "Keep that away from Sam's face! Don't swing that around! Sammy get down from there! Be careful! Blahblahblahblah!" And then there is the "stuff" like the short people being super-needy and whiny and demanding. Sammy is understandably super-needy, but David has amped it up in the neediness arena already. We see so many up stretched arms and carry around kids who are 30 pounds, give or take a few... it feels like when we just got back from China all over again. At least my back feels that way :-D It's that two-fer thing where you can't adequately meet both adopted kids' intense and pervasive needs at the same time. So we opt to tend to Sammy and sometimes David just has to wait a few minutes.
David's time is a-comin' though. Oh, baby.
And I do think we realistically know what to expect with David's recovery. He will be in lots more pain than Sammy is in now. And it ain't gonna be fun, but it will be so exciting when David can speak even more clearly. We are excited to hear his "new" voice, because we know it will immediately sound so different.
I was praying this morning and I suddenly realized that it is important to keep our eyes on the finish line, and to keep things in perspective. Thank you, Lord. Our goal with the surgeries is to have our kids be able to speak clearly and to have as little visible cleft scars as possible. These cleft surgeries will cause them pain, but it is temporary. It will be beautiful in the long run.
Keeping our eyes on the prize at the finish line,
(((hugs))),
chris
Give thanks to the Lord, for he is good! His faithful love endures forever.
~ Psalm 106:1
But I guess we never went through a lip repair-only surgery yet.
It has been a little better. Just goes to show you where me and my bad attitude got me.
It is still really hard to see your kid in so much pain. It has to be unbelievably hard to be the kid. Sammy's whole face swelled up so he couldn't smile (not that he would want to yet) and could hardly open his mouth. He is on a soft diet which is really nice because we can feed him regular food and he can actually get filled up.
Liquid diets suck, my friends...
So since he can't open his mouth much, we give him his liquids (drinks, soups, smoothies) with a syringe. It hurts to open wide enough even to take a regular cup. We use a tiny baby spoon to feed him soft foods like yogurt and mashed potatoes and mac 'n cheese. Any other spoons are too wide and it hurts him to open up that much. Sammy is our meat-eater ~ I swear the kid could eat meat all day long if we let him. Yesterday we cut up a hot dog and a piece of chicken in tiny little pieces about the size of peas and fed it to him. He was so happy!
So it has been a little better this time around, but we are still dealing with "stuff". Like being helicopter-parent worrying about anything bumping Sammy's face for fear the stitches will split. And if the stitches split, his face splits. Scary stuff. I feel like we are constantly barking at the boys, "Keep that away from Sam's face! Don't swing that around! Sammy get down from there! Be careful! Blahblahblahblah!" And then there is the "stuff" like the short people being super-needy and whiny and demanding. Sammy is understandably super-needy, but David has amped it up in the neediness arena already. We see so many up stretched arms and carry around kids who are 30 pounds, give or take a few... it feels like when we just got back from China all over again. At least my back feels that way :-D It's that two-fer thing where you can't adequately meet both adopted kids' intense and pervasive needs at the same time. So we opt to tend to Sammy and sometimes David just has to wait a few minutes.
David's time is a-comin' though. Oh, baby.
And I do think we realistically know what to expect with David's recovery. He will be in lots more pain than Sammy is in now. And it ain't gonna be fun, but it will be so exciting when David can speak even more clearly. We are excited to hear his "new" voice, because we know it will immediately sound so different.
I was praying this morning and I suddenly realized that it is important to keep our eyes on the finish line, and to keep things in perspective. Thank you, Lord. Our goal with the surgeries is to have our kids be able to speak clearly and to have as little visible cleft scars as possible. These cleft surgeries will cause them pain, but it is temporary. It will be beautiful in the long run.
Keeping our eyes on the prize at the finish line,
(((hugs))),
chris
Give thanks to the Lord, for he is good! His faithful love endures forever.
~ Psalm 106:1
Wednesday, May 16, 2012
Only 42 Hours to Get Healthy...
Yup, we have a sick one. D had a fever on and off on Sunday, Monday and Tuesday. Today no fever. He has also been coughing.
Anesthesiologists tend to not like fevers. And they tend to not like any chest congestion. They are so picky like that.
If David has either, it would mean a big negatory-good-buddy on D's having surgery on Friday.
I don't hear any congestion from just listening to David when I put my ear to his back. He has a shallow, dry cough. That is my professional medical opinion, just so ya know.
I wonder if both munchkins will have their surgeries on Friday.
Samuel will still have his surgery whether David has his or not. We have our Plan B ready to go.
Praying for one of those quick miraculous recoveries that kids tend to do.
And I bought a new bottle of Tums today.
Have I mentioned that I am a bit of a dork? I have no idea why the picture is backward. Nor do I know how to fix it. I crack myself up.
I guess I will take my "SMUT" when I need them...
(((hugs))),
chris
P.S. I will be updating our blog on Friday as we go along with the surgeries.
Give thanks to the Lord, for he is good! His faithful love endures forever.
~ Psalm 106:1
~ Psalm 106:1
Friday, May 4, 2012
T minus 3 and 14
OK, we are officially in the countdown to surgeries!
In three days, Samuel will have his dental surgery. Which, despite my acute fear of anesthesia, seems like nothin' in comparison to the big-daddy-type-surgeries to follow.
In 14 days both Samuel and David will have their big-daddy-type palate surgeries.
I have been thinking back to our last palate surgeries... ugh... the poor fellas were miserable! And I can't blame them. From what I have heard, the hard palate surgery is the most painful to recover from. Which makes sense, since they are having their bony top of the mouth fixed. This means their existing bone is sliced thin kind of like sliced lunchmeat, then layered across the top of their mouth and secured so the bones can heal together. (That is such a medically accurate description, I'm sure... not...)
Sammy had that last time.
David gets it this time.
So thinking back, the munchkins were in aLOT of pain for about two weeks after surgery. We kept them on their mega-pain killers for almost that long - around the clock for Samuel.
~~Memories of the munchkins (understandably) regressing and turning into little needy-bombs... and never being able to comfort both of them at once when they both needed it...
If I had to pick the hardest thing to live with as a parent of a munchkin recovering from a cleft surgery, I would have to say the worry that they might bump their face or stick something in their mouth and rip the stitches (aka their face or mouth) wide open. Everything else was draining and tiring, but getting past the "danger zone" and into the "healing zone" was the worst for us.
In three days, Samuel will have his dental surgery. Which, despite my acute fear of anesthesia, seems like nothin' in comparison to the big-daddy-type-surgeries to follow.
In 14 days both Samuel and David will have their big-daddy-type palate surgeries.
I have been thinking back to our last palate surgeries... ugh... the poor fellas were miserable! And I can't blame them. From what I have heard, the hard palate surgery is the most painful to recover from. Which makes sense, since they are having their bony top of the mouth fixed. This means their existing bone is sliced thin kind of like sliced lunchmeat, then layered across the top of their mouth and secured so the bones can heal together. (That is such a medically accurate description, I'm sure... not...)
Sammy had that last time.
David gets it this time.
So thinking back, the munchkins were in aLOT of pain for about two weeks after surgery. We kept them on their mega-pain killers for almost that long - around the clock for Samuel.
Aaaaahhhhh, sweet sweet memories~~~
~~Memories of not sleeping for three weeks until the arm restraints were off...
~~Memories of LOTS of coffee... truly a gift from God...
~~Memories of LOTS of coffee... truly a gift from God...
~~Memories of taking the boys potty every time they needed to go...
~~Memories of the boys being in so much flippin' pain and feeling so insufficient to help them...
~~Memories of the boys being in so much flippin' pain and feeling so insufficient to help them...
~~Memories of feeding the boys every. morsel. of. food. that. went. into. their. mouths. for. three. holy. moly. stinkin'. just. shoot. me. now. weeks... (except the sweet, sweet soups and smoothies and drinks that could go in open cups that they could feed themselves ~ cue the angels singing~~~~)
~~Memories of said open cups containing high-fat and/or thick liquids spilling all over the place ~ at least once every meal or snack time...
~~Memories of the munchkins (understandably) regressing and turning into little needy-bombs... and never being able to comfort both of them at once when they both needed it...
~~More memories of the munchkins waking up several times a night either in pain (poor guys) or just plain ol' uncomfortable because seriously, arm restraints suck...
~~Memories of being THE HELICOPTER-PARENT-ON-STEROIDS so they didn't bump their faces and tear open their stitches and need another surgery...
~~Memories of taking lots of Tums to calm my new ulcers...
~~Memories of in-and-out, in-and-out, in-and-out of the car with arm restraints on...
~~Memories of taking lots of Tums to calm my new ulcers...
~~Memories of in-and-out, in-and-out, in-and-out of the car with arm restraints on...
~~Memories of loving those boys like their lives depended on it. But of course, their lives do depend on it...
If I had to pick the hardest thing to live with as a parent of a munchkin recovering from a cleft surgery, I would have to say the worry that they might bump their face or stick something in their mouth and rip the stitches (aka their face or mouth) wide open. Everything else was draining and tiring, but getting past the "danger zone" and into the "healing zone" was the worst for us.
Prayers would be most appreciated. Don't worry, I will remind you again right before their surgeries ;-D
(((hugs))),
chris
The Lord will guide you continually,
giving you water when you are dry
and restoring your strength.
You will be like a well-watered garden,
like an ever-flowing spring. Isaiah 58:11
giving you water when you are dry
and restoring your strength.
You will be like a well-watered garden,
like an ever-flowing spring. Isaiah 58:11
Thursday, March 22, 2012
Surgeries Update
We have finally scheduled a tentative date for the surgeries ~ this date is in mid-May.
"But it's March... That's two months away!", you say...
Yes, it is two months away. In my ideal world-according-to-Chris, if I was Queen-of-the-Universe, we would have had these surgeries scheduled in early April so our 6-week recovery would be complete before summer.
I am so glad I'm not in charge :o)
We took Sammy to the dentist and he also needs some dental work done under anesthesia. Our medical insurance company likes to give doctors a hard time... approval for David's dental work (also under anesthesia) took two weeks to be approved. So as always (in the end anyway) I am so grateful the Lord is driving this party train... By having the surgeries two months out gives our dentist time tofight with the insurance company again have Sammy's dental work pre-approved and have his dental work completed before his lip repair.
Why is this so important?
Because when you have dental work done under anesthesia, they STREEETTTTCCCHHHH out your lips to get in to work on your teeth. You can't STREEEEEETTTTCCCHHHH out a lip that has just been put together without risking detaching some muscles up in there or even unzipping the whole lip. Good idea to fix the teeth first, eh?
Thanks again, God. You really do know best.
(((hugs))),
chris
Lead me by your truth and teach me, for you are the God who saves me. All day long I put my hope in you. Psalm 25:5
"But it's March... That's two months away!", you say...
Yes, it is two months away. In my ideal world-according-to-Chris, if I was Queen-of-the-Universe, we would have had these surgeries scheduled in early April so our 6-week recovery would be complete before summer.
I am so glad I'm not in charge :o)
We took Sammy to the dentist and he also needs some dental work done under anesthesia. Our medical insurance company likes to give doctors a hard time... approval for David's dental work (also under anesthesia) took two weeks to be approved. So as always (in the end anyway) I am so grateful the Lord is driving this party train... By having the surgeries two months out gives our dentist time to
Why is this so important?
Because when you have dental work done under anesthesia, they STREEETTTTCCCHHHH out your lips to get in to work on your teeth. You can't STREEEEEETTTTCCCHHHH out a lip that has just been put together without risking detaching some muscles up in there or even unzipping the whole lip. Good idea to fix the teeth first, eh?
Thanks again, God. You really do know best.
(((hugs))),
chris
Lead me by your truth and teach me, for you are the God who saves me. All day long I put my hope in you. Psalm 25:5
Tuesday, March 20, 2012
No News is...
no news...
Unfortunately.
Jason and I are trying to reel in our impatience with getting surgeries scheduled.
Tick tock, tick tock, the clock is a-ticking.
No update on our doc being able to use the nearby kids' hospital so we can have both surgeries done on the same day.
Just a whole lotta nuttin' new...
Just waiting...
We decided to schedule Samuel's lip repair as soon as we can (doc can do that at a different facility), and we're waiting for a call back from the scheduler-extraordinaire at our doc's office to make that happen...
That would mean David's palate surgery would probably happen later, maybe(??) sometime in the summer. Yuck, two recovery times for our family as well as a summer recovery does not fall in the funfunfun category IMHO...
All in God's perfect timing, right?
Come on, Lord, please move a mountain on this one...
(((hugs))),
chris
I love you, Lord; you are my strength. Psalm 18:1
Unfortunately.
Jason and I are trying to reel in our impatience with getting surgeries scheduled.
Tick tock, tick tock, the clock is a-ticking.
No update on our doc being able to use the nearby kids' hospital so we can have both surgeries done on the same day.
Just a whole lotta nuttin' new...
Just waiting...
We decided to schedule Samuel's lip repair as soon as we can (doc can do that at a different facility), and we're waiting for a call back from the scheduler-extraordinaire at our doc's office to make that happen...
That would mean David's palate surgery would probably happen later, maybe(??) sometime in the summer. Yuck, two recovery times for our family as well as a summer recovery does not fall in the funfunfun category IMHO...
All in God's perfect timing, right?
Come on, Lord, please move a mountain on this one...
(((hugs))),
chris
I love you, Lord; you are my strength. Psalm 18:1
Monday, March 12, 2012
Medical Update
Both boys are ready to go on to their next surgery!
Hurray!!! (insert jump and click heels together here)
Samuel will have a full lip repair ~ meaning that his lip muscles will be attached in the correct place and doc will make his lip look symmetrical with minimal scarring. Unfortunately, it seems that the fistula in his hard palate is a big one as far as holes-in-the-palate go, and there isn't much on the tooth side to attach the palate to. We might just let him grow, and look at getting him an obturator. An obturator is a prosthetic device that closes off the hole in the hard palate, and is helpful for speech. We are so excited that he will have his lip repaired.
David is ready to go with his hard palate repair. Yay! If you remember, he was the one we weren't sure about ~ the parts of his palate that he does have needed to grow more before he could have surgery. I guess what the doc did inside his mouth during the last surgery has helped to pull tissues so they would expand and grow. Doc thinks he could get David's hard palate closed in one surgery... maybe, maybe... You never know what will happen, but that would be such a blessing!
Our curveball is that the hospital our doc uses (and where we were for the last surgery) is closing their pediatric unit. Our doc found out very recently that this was happening, so he is working on getting privileges at the children's hospital up the road. We should know in a week or two if privileges will be expedited, and if we can have surgery sooner than later. If privileges are not expedited, then we can expect about a three month wait until our doc has privileges at the children's hospital. The good news is that our good friends' daughter has had surgeries at this children's hospital and they have been so happy with the hospital overall. So we will have that to look forward to :o)
We are praying that these surgeries can be scheduled very soon. While there is no harm in waiting for surgery and no medical urgency, sooner would be a blessing for a couple reasons. The most important is that, at 4 years old, David is really old to have a palate repair. He is losing precious time to learn to speak clearly. And Samuel's lips can't close properly to help him speak clearly. So time is ticking away ~ the longer they go without the ability to speak clearly, the harder it is to undo the bad habits and relearn how to talk intelligibly. It is also important socially for the boys to look more like their friends and to talk more like their friends.
Our doc said he should know within two weeks after our appointment whether privileges will be expedited or not...
Two weeks is today on my calendar.
I'll be calling the doc this morning :o)
(((hugs))),
chris
We can make our own plans, but the Lord gives the right answer. Proverbs 16:1
Hurray!!! (insert jump and click heels together here)
Samuel will have a full lip repair ~ meaning that his lip muscles will be attached in the correct place and doc will make his lip look symmetrical with minimal scarring. Unfortunately, it seems that the fistula in his hard palate is a big one as far as holes-in-the-palate go, and there isn't much on the tooth side to attach the palate to. We might just let him grow, and look at getting him an obturator. An obturator is a prosthetic device that closes off the hole in the hard palate, and is helpful for speech. We are so excited that he will have his lip repaired.
David is ready to go with his hard palate repair. Yay! If you remember, he was the one we weren't sure about ~ the parts of his palate that he does have needed to grow more before he could have surgery. I guess what the doc did inside his mouth during the last surgery has helped to pull tissues so they would expand and grow. Doc thinks he could get David's hard palate closed in one surgery... maybe, maybe... You never know what will happen, but that would be such a blessing!
Our curveball is that the hospital our doc uses (and where we were for the last surgery) is closing their pediatric unit. Our doc found out very recently that this was happening, so he is working on getting privileges at the children's hospital up the road. We should know in a week or two if privileges will be expedited, and if we can have surgery sooner than later. If privileges are not expedited, then we can expect about a three month wait until our doc has privileges at the children's hospital. The good news is that our good friends' daughter has had surgeries at this children's hospital and they have been so happy with the hospital overall. So we will have that to look forward to :o)
We are praying that these surgeries can be scheduled very soon. While there is no harm in waiting for surgery and no medical urgency, sooner would be a blessing for a couple reasons. The most important is that, at 4 years old, David is really old to have a palate repair. He is losing precious time to learn to speak clearly. And Samuel's lips can't close properly to help him speak clearly. So time is ticking away ~ the longer they go without the ability to speak clearly, the harder it is to undo the bad habits and relearn how to talk intelligibly. It is also important socially for the boys to look more like their friends and to talk more like their friends.
Our doc said he should know within two weeks after our appointment whether privileges will be expedited or not...
Two weeks is today on my calendar.
I'll be calling the doc this morning :o)
(((hugs))),
chris
We can make our own plans, but the Lord gives the right answer. Proverbs 16:1
Tuesday, October 18, 2011
Inquiring Minds...
I have heard this question (or a version of it) a lot, "Are the boys done with surgeries now?"
Oh, no, my friend. Oh, no.
And that question is followed up with some version of, "How many more surgeries?" or "What else needs to be fixed?"
Do we know how many or what kinds of surgeries they will need? Nope.
Sorry to be vague. It is a kind of "wait and see" process. I think we'll only know what should be the next step as we go along.
The boys just had their first surgery. We only know what is next. Samuel will have his full lip repair done in about 6 months. That means they line everything up and attach all the muscles under his lip. He doesn't look much different now from the front (you should see the roof of his mouth though :) it's very amazing and exciting), but he should after the next surgery. With David, we wait for him to grow and then the doc will attempt to close up the top of his mouth (his hard palate). How long will that take? Who knows. How about we evaluate again in 6 months. I predict that David's palate will take several surgeries to close.
I'm not being pessimistic, just being realistic. Wouldn't it be a pleasant surprise to only have one surgery to close up David's palate, eh?
I also predict one more lip revision for David. I double-checked with my crystal ball on this one :o) I think there is still a loose muscle in there that needs to be fixed. Perhaps it was fixed this last surgery, but a flying book or no-nos rubbing on his face made it detach...
Once the lips and roofs of the mouth are closed up, and the boys are talking more clearly, we'll be able to see ~ or rather hear ~ if their soft palate is working properly. Your soft palate is the flappy part at the back of your throat that keeps you from sounding like Nasal-Nelly all the time. You need to close your soft palate to make certain sounds when you speak, especially the plosives like "b" and "p". If the boys can't seem to do this, they can be evaluated to find out the reason. I think they can put some sort of camera in their nose and take a look at what might be causing the trouble ~ whether the soft palate just isn't moving (velopharangeal incompetence) or it isn't long enough (velopharangeal insufficiency).
If their soft palate isn't closing because it is not big enough, then they will need that fixed surgically. I think there are two ways to do this. The docs can either reconstruct the soft palate or make a "speed bump" out of tissue so that the soft palate can close. I'm not sure at what age this would happen... so I'll guess around 5-6ish.
After their permanent teeth come in, they will need a bone graft in their upper teethridge (the alveolar ridge). I think the docs usually take bone from the hip to do this. All kids with clefts that go up into the roof of their mouth need this, since there is a split in their gumline. I have heard this surgery falls into the "not fun" category just like the hard palate surgery... ouch...
As they grow, we'll see if their jaw and upper teethridge are growing at the same pace. Sometimes the upper teethridge doesn't grow fully with all the stuff that's happenin' in there, so surgery is needed to line the top and bottom up. I think that happens later, maybe in the late teen years when they are at their adult size.
And all along the way we'll keep an eye on their ears in case they need new ear tubes.
And fistulas will not be our friends. Those mean more surgeries. We love our plastic surgeon, but not that much...
So that's surgery-land as I know it.
I bet Igot something wrong will learn more as we go along.
I have to figure out a short and sweet answer to the question, "Are the boys done with surgeries now?"
Ask me when they are in high school and we'll have a better idea :o)
(((hugs))),
chris
Give all your worries and cares to God, for he cares about you. 1 Peter 5:7
Oh, no, my friend. Oh, no.
And that question is followed up with some version of, "How many more surgeries?" or "What else needs to be fixed?"
Do we know how many or what kinds of surgeries they will need? Nope.
Sorry to be vague. It is a kind of "wait and see" process. I think we'll only know what should be the next step as we go along.
The boys just had their first surgery. We only know what is next. Samuel will have his full lip repair done in about 6 months. That means they line everything up and attach all the muscles under his lip. He doesn't look much different now from the front (you should see the roof of his mouth though :) it's very amazing and exciting), but he should after the next surgery. With David, we wait for him to grow and then the doc will attempt to close up the top of his mouth (his hard palate). How long will that take? Who knows. How about we evaluate again in 6 months. I predict that David's palate will take several surgeries to close.
I'm not being pessimistic, just being realistic. Wouldn't it be a pleasant surprise to only have one surgery to close up David's palate, eh?
I also predict one more lip revision for David. I double-checked with my crystal ball on this one :o) I think there is still a loose muscle in there that needs to be fixed. Perhaps it was fixed this last surgery, but a flying book or no-nos rubbing on his face made it detach...
Once the lips and roofs of the mouth are closed up, and the boys are talking more clearly, we'll be able to see ~ or rather hear ~ if their soft palate is working properly. Your soft palate is the flappy part at the back of your throat that keeps you from sounding like Nasal-Nelly all the time. You need to close your soft palate to make certain sounds when you speak, especially the plosives like "b" and "p". If the boys can't seem to do this, they can be evaluated to find out the reason. I think they can put some sort of camera in their nose and take a look at what might be causing the trouble ~ whether the soft palate just isn't moving (velopharangeal incompetence) or it isn't long enough (velopharangeal insufficiency).
If their soft palate isn't closing because it is not big enough, then they will need that fixed surgically. I think there are two ways to do this. The docs can either reconstruct the soft palate or make a "speed bump" out of tissue so that the soft palate can close. I'm not sure at what age this would happen... so I'll guess around 5-6ish.
After their permanent teeth come in, they will need a bone graft in their upper teethridge (the alveolar ridge). I think the docs usually take bone from the hip to do this. All kids with clefts that go up into the roof of their mouth need this, since there is a split in their gumline. I have heard this surgery falls into the "not fun" category just like the hard palate surgery... ouch...
As they grow, we'll see if their jaw and upper teethridge are growing at the same pace. Sometimes the upper teethridge doesn't grow fully with all the stuff that's happenin' in there, so surgery is needed to line the top and bottom up. I think that happens later, maybe in the late teen years when they are at their adult size.
And all along the way we'll keep an eye on their ears in case they need new ear tubes.
And fistulas will not be our friends. Those mean more surgeries. We love our plastic surgeon, but not that much...
So that's surgery-land as I know it.
I bet I
I have to figure out a short and sweet answer to the question, "Are the boys done with surgeries now?"
Ask me when they are in high school and we'll have a better idea :o)
(((hugs))),
chris
Give all your worries and cares to God, for he cares about you. 1 Peter 5:7
Thursday, September 29, 2011
We are going home!!!!!!!
Chat at you from home!!!!!
Thanks for all the prayers and well wishes!!!!
(((hugs))),
Chris & Jason
Good Morning from the Hospital
It's about 10am, and the boys are awake and happy enough finally to color with crayons in their coloring books. Praise God!
Last night was sort of long. Jason ended up spending the night. There would have been no other way to be happy and restful last night without both of us here. Jason slept in bed with Samuel, and I slept in bed with David. The rooms here are set up for one patient, so our two adult-size beds and two IV poles and extra monitor pole and two tray tables is quite cozy :o)
Samuel slept pretty well. He is not a fan of the nurses and doctors, so when they come around he gets upset. We are keeping him on his pain meds even if he's not grumpy, just to keep ahead of the pain. He's not drinking much this morning, so it's too early to tell if he can go home today. He is still spunky little Sammy.
David slept not as well last night. Until about 1:30am, he kept waking up about every 20 minutes or so. He seemed afraid and anxious, but would calm quickly after I reassured him that I was still there. We think he has memories of his first surgery over in China, and we have no idea how that experience was. After 1:30am, David and I got longer blocks of sleep and we were even able to stretch out time between his pain meds. This morning he ate a full bowl of Cream of Wheat and is slowly drinking apple juice. It is possible that David can be released today. He already asked me for a few kisses this morning. Still sweet little David.
(((hugs))),
chris & jason
Last night was sort of long. Jason ended up spending the night. There would have been no other way to be happy and restful last night without both of us here. Jason slept in bed with Samuel, and I slept in bed with David. The rooms here are set up for one patient, so our two adult-size beds and two IV poles and extra monitor pole and two tray tables is quite cozy :o)
Samuel slept pretty well. He is not a fan of the nurses and doctors, so when they come around he gets upset. We are keeping him on his pain meds even if he's not grumpy, just to keep ahead of the pain. He's not drinking much this morning, so it's too early to tell if he can go home today. He is still spunky little Sammy.
David slept not as well last night. Until about 1:30am, he kept waking up about every 20 minutes or so. He seemed afraid and anxious, but would calm quickly after I reassured him that I was still there. We think he has memories of his first surgery over in China, and we have no idea how that experience was. After 1:30am, David and I got longer blocks of sleep and we were even able to stretch out time between his pain meds. This morning he ate a full bowl of Cream of Wheat and is slowly drinking apple juice. It is possible that David can be released today. He already asked me for a few kisses this morning. Still sweet little David.
(((hugs))),
chris & jason
Wednesday, September 28, 2011
The Party's Ooooverrrr!
David is back in our room now sleeping a sound morphine-induced sleep. ZZzzzzzzz
The doc was not able to close his hard palate. David's soft palate was closed up (that's the part toward the back of the mouth that closes off your nose when you talk so you don't sound all nasally).
Nasally. That's a technical term that I just made up.
David will still sound nasally and be hard to understand when he talks since his hard palate is open. The doc said David will have to grow more before we're able to close his very wiiiiiiiide hard palate. I have a feeling we're looking at multiple surgeries to close his hard palate. The doc also did some work on David's lip and nose. The specific thing worth mentioning is that David's upper lip muscles were not attached at all when then did the lip repair in China. These muscles are now attached. I think the little man already looks a little different in his nose/mouth area even with the tape and stitches and swelling and blood goop.
Samuel is still sleep sitting in Jason's lap. He will be the munchkin in the most pain.
Please pray for a quiet night and that we can keep on top of the pain meds.
Love & (((hugs))),
chris & jason
The doc was not able to close his hard palate. David's soft palate was closed up (that's the part toward the back of the mouth that closes off your nose when you talk so you don't sound all nasally).
Nasally. That's a technical term that I just made up.
David will still sound nasally and be hard to understand when he talks since his hard palate is open. The doc said David will have to grow more before we're able to close his very wiiiiiiiide hard palate. I have a feeling we're looking at multiple surgeries to close his hard palate. The doc also did some work on David's lip and nose. The specific thing worth mentioning is that David's upper lip muscles were not attached at all when then did the lip repair in China. These muscles are now attached. I think the little man already looks a little different in his nose/mouth area even with the tape and stitches and swelling and blood goop.
Samuel is still sleep sitting in Jason's lap. He will be the munchkin in the most pain.
Please pray for a quiet night and that we can keep on top of the pain meds.
Love & (((hugs))),
chris & jason
One down, one to go
Samuel's surgery went well. It went five hours, and the doc was able to close up his palate. They did the lip adhesion too which means they put Sammy's lip parts together. His lip doesn't look a whole lot better now because it is pulled pretty tight. It will look better over time, and the next surgery (his lip repair) will fix him up so he looks even better.
Sammy is still oh so uber-cute you wouldn't believe it :o)
David is in now and we don't know how long his surgery will take. The doc planned for about 4 hours and they started around 1pm. The reason we don't know how long is the doc doesn't know how much tissue they have to work with in his palate until he gets in to take a look. If there is lots of tissue to work with, then the doc may be able to close up the whole palate and that will take longer. If there isn't alot to work with, then they will be done sooner. That's the palate part. If he does do a lip repair, we're not sure how much the doc can get done as far as cleaning up scar tissue, redoing his muscle connections, and lining things up better. So who knows how long that will take.
David has charmed and won over the entire surgical staff...
OK, time for more pain meds... then Mama is going to try to nap. HAHAHAHA
(((HUGS))),
CHRIS
oops caps lock issues with my one finger typing hehe
Sammy is still oh so uber-cute you wouldn't believe it :o)
David is in now and we don't know how long his surgery will take. The doc planned for about 4 hours and they started around 1pm. The reason we don't know how long is the doc doesn't know how much tissue they have to work with in his palate until he gets in to take a look. If there is lots of tissue to work with, then the doc may be able to close up the whole palate and that will take longer. If there isn't alot to work with, then they will be done sooner. That's the palate part. If he does do a lip repair, we're not sure how much the doc can get done as far as cleaning up scar tissue, redoing his muscle connections, and lining things up better. So who knows how long that will take.
David has charmed and won over the entire surgical staff...
OK, time for more pain meds... then Mama is going to try to nap. HAHAHAHA
(((HUGS))),
CHRIS
oops caps lock issues with my one finger typing hehe
Happy Surgery Day...
We are going to use our blog to update all our peeps who are thinking of us and praying for the munchkins while we're here at the hospital.
First, we are humbled by all who are praying for the boys. Thanks and love and hugs to you all.
~~~~~~~~~~~~~~~
This morning started early for all of us. I woke up Samuel last night at 10:30pm to get some food in him. He ate only a little bit, then had a little juice at 4:30am today. He seemed OK and not starving this morning.
David ate this morning at 4:15am. He didn't eat much, unfortunately, and he is hungry already. Thankfully he can have clear liquids up until about 10:00am, so hopefully he will be happy with that.
Samuel just went in for surgery. When we all went back to the prep area, Samuel started screaming and crying. He saw plastic bins (like the ones the phlebotomist has the vials in at our lab) and he absolutely freaked out. (side note: I don't know if I shared that he has had two blood draws with no luck because he was so freaked out and traumatized by the first evil-phlebotomist who dug around in his arm for way too long) He was inconsolable for a while, and eventually came out of it when Jason held him. When the anesthesiologist came in, he gave Samuel a mask with bubble gum scent inside. We played with it for a while, and he put on a surgical glove, and Jason made a surgical glove balloon... He seemed OK at that point with the docs and nurses walking in and out (thank you Lord). Samuel seemed happy when Jason carried him back, and only fussed a little when the mask was on him and blowing in his face. We waited in the waiting area for 20 minutes, and the ENT came out and said he was done with his part... so far so good!
Now we can just hang out for about two hours until they need to prep David.
Hang out andgrow an ulcer relax and keep David distracted from his growling tummy. It is a beautiful day for a walk. We even brought David's hot pink stroller we bought in China :-)
We are blessed with amazing people taking care of our munchkins today: the anesthesiologist, the plastic surgeon, the ENT, and each of the nurses we saw this morning.
More to come in a few hours when we know more...
Have a beautiful day,
(((hugs))),
chris
First, we are humbled by all who are praying for the boys. Thanks and love and hugs to you all.
~~~~~~~~~~~~~~~
This morning started early for all of us. I woke up Samuel last night at 10:30pm to get some food in him. He ate only a little bit, then had a little juice at 4:30am today. He seemed OK and not starving this morning.
David ate this morning at 4:15am. He didn't eat much, unfortunately, and he is hungry already. Thankfully he can have clear liquids up until about 10:00am, so hopefully he will be happy with that.
Samuel just went in for surgery. When we all went back to the prep area, Samuel started screaming and crying. He saw plastic bins (like the ones the phlebotomist has the vials in at our lab) and he absolutely freaked out. (side note: I don't know if I shared that he has had two blood draws with no luck because he was so freaked out and traumatized by the first evil-phlebotomist who dug around in his arm for way too long) He was inconsolable for a while, and eventually came out of it when Jason held him. When the anesthesiologist came in, he gave Samuel a mask with bubble gum scent inside. We played with it for a while, and he put on a surgical glove, and Jason made a surgical glove balloon... He seemed OK at that point with the docs and nurses walking in and out (thank you Lord). Samuel seemed happy when Jason carried him back, and only fussed a little when the mask was on him and blowing in his face. We waited in the waiting area for 20 minutes, and the ENT came out and said he was done with his part... so far so good!
Now we can just hang out for about two hours until they need to prep David.
Hang out and
We are blessed with amazing people taking care of our munchkins today: the anesthesiologist, the plastic surgeon, the ENT, and each of the nurses we saw this morning.
More to come in a few hours when we know more...
Have a beautiful day,
(((hugs))),
chris
Sunday, September 25, 2011
T minus 3
OK, I had to do another T-minus post, you know, since I got gypped out of T-minus posts before we left for China. Remember? We went from T-minus 10 to T-minus 3, like, overnight... Actually, literally, overnight. Just when you think you have 9 days to get ready for an adoption trip, surprise! you're leaving in 3 days :-)
All in God's absolutely, perfectly, magnificently, perfect timing.
So today we're 3 days out from surgeries. Jason and I are a little nervous. Nervous about this upcoming mouth-reconstruction-type surgery, nervous about the painful recovery, and a little nervous about the illness that is still visiting at our house. The cold/cough situation does seem to be waning a bit. David still has a cough when he first wakes up, but he doesn't cough much throughout the day. Status quo for #1 and #3, so they are no worse off. And still no fevers.
Thank you all for your prayers. God is listening :-)
Here are a few pictures from our picnic yesterday (including the new pic at the top of our blog). Have a beautiful day!
(((hugs))),
chris
2 Corinthians 6:3-4 We try to live in such a way that no one will be hindered from finding the Lord by the way we act, and so no one can find fault with our ministry. In everything we do we try to show that we are true ministers of God.
All in God's absolutely, perfectly, magnificently, perfect timing.
So today we're 3 days out from surgeries. Jason and I are a little nervous. Nervous about this upcoming mouth-reconstruction-type surgery, nervous about the painful recovery, and a little nervous about the illness that is still visiting at our house. The cold/cough situation does seem to be waning a bit. David still has a cough when he first wakes up, but he doesn't cough much throughout the day. Status quo for #1 and #3, so they are no worse off. And still no fevers.
Thank you all for your prayers. God is listening :-)
Here are a few pictures from our picnic yesterday (including the new pic at the top of our blog). Have a beautiful day!
(((hugs))),
chris
2 Corinthians 6:3-4 We try to live in such a way that no one will be hindered from finding the Lord by the way we act, and so no one can find fault with our ministry. In everything we do we try to show that we are true ministers of God.
Wednesday, September 21, 2011
Surgery Update
One week from today. That's when the munchkins' surgeries are scheduled.
I am stressing about this waaaaaay too much. I am not in control. I am not in control. I am not in control.
OK, not doing well turning it over to the One who is in charge.
Let me back up for you. When we scheduled these surgeries, we decided that having the surgeries on the same day is best for our family. Some people think we're nuts, and some people are super-supportive. It seems the super-supportive people are the ones who have done this sort of thing themselves, or who know us best, or who work at the surgeon's office. Anyhoo, the surgeon and the ENT were available together on September 28th so we grabbed that date up. The operating room peeps needed to juggle some surgery rooms around, but they made it work and got us in. Now the next day that both docs were available was November 22nd. So IF we can't do surgeries next Wednesday, September 28th, we're looking at postponing for months. And who knows if November 22nd is still available for both docs. And wouldn't it be not fun to be recovering around the holidays?
The reason it is best for the munchkins to do the surgery sooner is this: the sooner we close up their palates, the sooner we can start speech therapy so they can start learning to use their mouths correctly to eat and speak intelligibly. In the U.S., we do cleft lip surgery around 1-3 months old, and the palate surgery is done around maybe 7-9 months old. Yes, the munchkins are still young and they should do just fine, but David is already three years past when U.S. docs would have closed up that palate. That's alot of time in kid-years.
The reason I am stressing: we have a cold and cough living in our house. Great time to visit, you $@*)!# stinkin' cold/cough! Josh had the cough first, and he seems to be doing better already. He still has a runny nose. Now David has the cough, and today he is the one I am most worried about. Samuel has a runny nose, but I'm not sure that is anything new and he isn't coughing yet.
Please pray for the munchkins to get healthy. At least healthy enough to have surgery next Wednesday.
In the meantime, I'll work on trusting that it all will happen according to God's plan. I know it always does.
The Lord is my strength and shield.
I trust him with all my heart.
He helps me, and my heart is filled with joy.
I burst out in songs of thanksgiving.
Psalm 28:7
I am stressing about this waaaaaay too much. I am not in control. I am not in control. I am not in control.
OK, not doing well turning it over to the One who is in charge.
Let me back up for you. When we scheduled these surgeries, we decided that having the surgeries on the same day is best for our family. Some people think we're nuts, and some people are super-supportive. It seems the super-supportive people are the ones who have done this sort of thing themselves, or who know us best, or who work at the surgeon's office. Anyhoo, the surgeon and the ENT were available together on September 28th so we grabbed that date up. The operating room peeps needed to juggle some surgery rooms around, but they made it work and got us in. Now the next day that both docs were available was November 22nd. So IF we can't do surgeries next Wednesday, September 28th, we're looking at postponing for months. And who knows if November 22nd is still available for both docs. And wouldn't it be not fun to be recovering around the holidays?
The reason it is best for the munchkins to do the surgery sooner is this: the sooner we close up their palates, the sooner we can start speech therapy so they can start learning to use their mouths correctly to eat and speak intelligibly. In the U.S., we do cleft lip surgery around 1-3 months old, and the palate surgery is done around maybe 7-9 months old. Yes, the munchkins are still young and they should do just fine, but David is already three years past when U.S. docs would have closed up that palate. That's alot of time in kid-years.
The reason I am stressing: we have a cold and cough living in our house. Great time to visit, you $@*)!# stinkin' cold/cough! Josh had the cough first, and he seems to be doing better already. He still has a runny nose. Now David has the cough, and today he is the one I am most worried about. Samuel has a runny nose, but I'm not sure that is anything new and he isn't coughing yet.
Please pray for the munchkins to get healthy. At least healthy enough to have surgery next Wednesday.
In the meantime, I'll work on trusting that it all will happen according to God's plan. I know it always does.
The Lord is my strength and shield.
I trust him with all my heart.
He helps me, and my heart is filled with joy.
I burst out in songs of thanksgiving.
Psalm 28:7
Thursday, September 1, 2011
Clefty Updates
Today was Cleft Palate Clinic day for us!!!
At the clinic, docs from all the disciplines that we will need for the munchkins were there to evaluate them. There were probaby 10 kids at the clinic, and we all just rotated through visiting the various docs. We saw a pediatrician (who coordinates the program), an audiologist, two orthodontists, two oral surgeons, a pediatric dentist, an ENT, a plastic surgeon, and a speech pathologist. The speech pathologist also helps coordinate the clinic, and she was the one who spent so much time on the phone with me before we traveled to get the munchkins.
The orthodontists, oral surgeons, and dentist were all in one room, as were the plastic surgeon and the ENT, so it wasn't as lengthy and overwhelming as it sounds :)
Our next step is to schedule surgeries. Here is where we're going to start:
Pros for having surgeries on different days:
We're both leaning toward doing the surgeries on the same day. Please pray with us for clear direction on this decision.
(((hugs))),
chris the crazy two-fer momma
1 Chronicles 16:11 Search for the Lord and for his strength; continually seek him.
At the clinic, docs from all the disciplines that we will need for the munchkins were there to evaluate them. There were probaby 10 kids at the clinic, and we all just rotated through visiting the various docs. We saw a pediatrician (who coordinates the program), an audiologist, two orthodontists, two oral surgeons, a pediatric dentist, an ENT, a plastic surgeon, and a speech pathologist. The speech pathologist also helps coordinate the clinic, and she was the one who spent so much time on the phone with me before we traveled to get the munchkins.
The orthodontists, oral surgeons, and dentist were all in one room, as were the plastic surgeon and the ENT, so it wasn't as lengthy and overwhelming as it sounds :)
Our next step is to schedule surgeries. Here is where we're going to start:
- David will have a palate surgery. He has a very wiiiiiiiide cleft, so the surgeon said he will try to get his whole palate closed up, but we may need to do the closure in stages (i.e. multiple surgeries).
- Samuel will have a combined surgery - a lip adhesion and palate surgery. The lip adhesion means that his lips won't be completely fixed, but first the sides of his top lip will be attached to his funky lip bump (which is actually called a prolabium if you want to get technical and doctor-ish). This way his upper lip can start growing back toward a more normal position while it heals. So it will still look funky after surgery. In the same surgery, the surgeon will close Samuel's palate, which should be completed in just one surgery. (Samuel's next surgery will be about 6 months later, and his lip will be fully repaired at that time, including repositioning muscles and lining everything up.)
Pros for having surgeries on different days:
- Only one munchkin at a time will be recovering and in pain, and coming off anesthesia.
- There will be only one munchkin potentially waking us up at night due to pain/trauma/anxiety/post-surgery issues.
- Only one munchkin at a time will be uber-needy because they just had surgery. (I'm not sure how this differs from our every day uber-neediness especially a month ago when we first met them... but I'm sure it's probably worse.)
- Both munchkins will be recovering and in pain and coming off anesthesia together, rather than us doing it all once and doing it again a month later.
- We'll potentially be up anyway with pain/trauma/anxiety/post-surgery issues, so we might as well get up with both boys (i.e. we'll just be sleepy for one block of time instead of two).
- We have experience with both munchkins being uber-needy at the same time.
- Jason only needs to take off work for one short block of time instead of two.
- We're pureeing food for three weeks of the recovery time anyway, might as well make a double batch!
We're both leaning toward doing the surgeries on the same day. Please pray with us for clear direction on this decision.
(((hugs))),
chris the crazy two-fer momma
1 Chronicles 16:11 Search for the Lord and for his strength; continually seek him.
Sunday, June 5, 2011
Random Clefty Thoughts
What causes a cleft lip/palate? A cleft lip and palate happens when the tissue that forms the roof of the mouth and upper lip don't join in the first couple months of pregnancy. It could be due to the mother's poor living conditions, exposure to chemicals/pollution or poor prenatal care. The cleft can be unilateral (occurring on only one side of the lip/palate like Samuel's) or bilateral (occurring on both sides of the lip/palate like David's). A cleft lip and palate opening goes from the nostril, through the lip and gum line, and all the way through the roof of the mouth to the uvula.
How does a cleft lip/palate impact everyday life? Having an open palate (roof of your mouth) can cause problems breathing, feeding, hearing, or speaking. We'll have to see how the munchkins' cleft issues affect them after we get to know them. Most kids with cleft issues eat most foods just fine. Sometimes food can get caught in their open palate, and we will need to use a booger-sucker (technical term) to get the food out. Yum! If we don't get all the food out, well, we will definitely notice the munchkins' cleft issues when they sneeze... and food comes out their noses later! Kids with cleft issues have more frequent ear infections which can cause hearing issues, and will usually need ear tubes at some point. Many kids with an unrepaired palate can speak, but may not be intelligible to those who don't know their "accent". Sometimes kids with an unrepaired palate are mostly intelligible, but speak with a nasally voice. I suspect we will be comfortable with day to day management of our boys' cleft issues by the time we get home from China.
So, if the open palate causes no problems for the munchkins, why do they need surgeries? The number one reason is speech. With no way to close off the air that escapes through their noses, it would be all but physically impossible for them to say certain consonant sounds. They will need speech services to help them learn how to correctly use their new palates and speak clearly. Having corrective surgery will also help to stabilize their mouths. It is common to wait until 4-6 months after any surgery to start or resume speech services. We'll have to see what our doctors say when we get to that point.
How many surgeries will they have? We have no idea. David already had a lip repair in China. His palate is still wide open (extra wide since he had a bilateral cleft), so he will at least need a palate repair. Many times kids need additional surgeries as they grow. Samuel may or may not be able to have his lip and palate repaired at the same time. I think that depends on the surgeon, and the extent of the repair. Other possible surgeries would include ear tubes -- not a huge surgery, but a surgery nonetheless. We hope for one palate surgery for each boy, which needs to heal correctly, with no holes, and function correctly as far as speech goes. Sometimes after palate surgery, a fistula (or hole) opens in the palate that needs to be surgically repaired. Down the line they may need a procedure to "release" the lip if it healed tight after the lip repair surgery. A tight lip will impact the jaw and teeth. As they grow, they may need bone grafting to fill in the gum line. Sometimes a surgery is needed to lengthen the back of the palate as they grow. There will probably be some dental procedures depending on how their teeth come in. These surgeries will happen over the span of years. Certain things will need to grow and develop before they can do some of the corrective surgeries.
Thinking of every possible procedure and surgery all at once is too overwhelming to think about. Our plan is to really just live a very normal life day-to-day. The munchkins' cleft issues are just one small part of who they are.
Hebrews 10:24-25 Let us think of ways to motivate one another to acts of love and good works. And let us not neglect our meeting together, as some people do, but encourage one another, especially now that the day of his return is drawing near.
How does a cleft lip/palate impact everyday life? Having an open palate (roof of your mouth) can cause problems breathing, feeding, hearing, or speaking. We'll have to see how the munchkins' cleft issues affect them after we get to know them. Most kids with cleft issues eat most foods just fine. Sometimes food can get caught in their open palate, and we will need to use a booger-sucker (technical term) to get the food out. Yum! If we don't get all the food out, well, we will definitely notice the munchkins' cleft issues when they sneeze... and food comes out their noses later! Kids with cleft issues have more frequent ear infections which can cause hearing issues, and will usually need ear tubes at some point. Many kids with an unrepaired palate can speak, but may not be intelligible to those who don't know their "accent". Sometimes kids with an unrepaired palate are mostly intelligible, but speak with a nasally voice. I suspect we will be comfortable with day to day management of our boys' cleft issues by the time we get home from China.
So, if the open palate causes no problems for the munchkins, why do they need surgeries? The number one reason is speech. With no way to close off the air that escapes through their noses, it would be all but physically impossible for them to say certain consonant sounds. They will need speech services to help them learn how to correctly use their new palates and speak clearly. Having corrective surgery will also help to stabilize their mouths. It is common to wait until 4-6 months after any surgery to start or resume speech services. We'll have to see what our doctors say when we get to that point.
How many surgeries will they have? We have no idea. David already had a lip repair in China. His palate is still wide open (extra wide since he had a bilateral cleft), so he will at least need a palate repair. Many times kids need additional surgeries as they grow. Samuel may or may not be able to have his lip and palate repaired at the same time. I think that depends on the surgeon, and the extent of the repair. Other possible surgeries would include ear tubes -- not a huge surgery, but a surgery nonetheless. We hope for one palate surgery for each boy, which needs to heal correctly, with no holes, and function correctly as far as speech goes. Sometimes after palate surgery, a fistula (or hole) opens in the palate that needs to be surgically repaired. Down the line they may need a procedure to "release" the lip if it healed tight after the lip repair surgery. A tight lip will impact the jaw and teeth. As they grow, they may need bone grafting to fill in the gum line. Sometimes a surgery is needed to lengthen the back of the palate as they grow. There will probably be some dental procedures depending on how their teeth come in. These surgeries will happen over the span of years. Certain things will need to grow and develop before they can do some of the corrective surgeries.
Thinking of every possible procedure and surgery all at once is too overwhelming to think about. Our plan is to really just live a very normal life day-to-day. The munchkins' cleft issues are just one small part of who they are.
Hebrews 10:24-25 Let us think of ways to motivate one another to acts of love and good works. And let us not neglect our meeting together, as some people do, but encourage one another, especially now that the day of his return is drawing near.
Sunday, January 16, 2011
Cleft
I have been doing research on cleft lip and cleft palate, and honestly I am overwhelmed. I studied speech-language pathology as an undergraduate for a year before changing majors to special education, so the vocabulary used in discussing cleft lip and palate surgeries and therapy is familiar to me. I knew there would be many surgeries, but I am reading about people having between four and eighteen (that's 18!) surgeries... yikes! And the recovery time after each surgery, while it does vary, requires a liquid diet then soft diet and "no-no's" until the child is beyond the point that they can hurt themselves. "No-no's" are removable arm braces that keep the child from being able to bend at the elbow. They keep the child's hands out of their mouth until they heal enough that they can't undo whatever was fixed during surgery. Recovery instructions vary greatly depending on the doctor, so we'll see what our recovery instructions will be when we get there. None of it sounds like much fun for the boys. Or for us. We'll need lots of prayers, that's for sure!
I have no idea how we would do this if I was working outside our home.
Another thing that's for sure is that God is on this journey with us, leading us to these boys. We feel His love every day, and He prepares us for each obstacle we come across. He brought us here, and He will be with us for the whole ride. He has prepared our family for dealing with cleft issues by my education, our choice to have me stay home, an amazing pediatrician with a heart for orphans, and Jason's unbelievable patience and strength.
Psalm 18:32 It is God who arms me with strength and keeps my way secure.
I have no idea how we would do this if I was working outside our home.
Another thing that's for sure is that God is on this journey with us, leading us to these boys. We feel His love every day, and He prepares us for each obstacle we come across. He brought us here, and He will be with us for the whole ride. He has prepared our family for dealing with cleft issues by my education, our choice to have me stay home, an amazing pediatrician with a heart for orphans, and Jason's unbelievable patience and strength.
Psalm 18:32 It is God who arms me with strength and keeps my way secure.
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