Most of you don't know ... but a few years ago I wrote a series of kids books about Foster care. Two are completely finished, one is about to be. Never really did anything about them.
The other day, Zoe was looking at one and asked if I could write a book about her. She thought it would be a nice way to share with her teacher and classmates about cleft lip and palate.
Why not? What a great idea.
Anyway, I'm not an artist so I decided to just use her photographs. It would be almost like a photo album but include the words to explain about cleft issues such as tubes, surgeries, speech, etc. Besides, I think the pictures have a realism about them that artwork just can't convey. And as I got to showing it to a couple of people, they thought it might be nice for other families too. I don't know.
So I started to research and found VERY few cleft resources. The few that come up to the top of the search are fine. We've read them. They were just not what we were looking for. So maybe there is a small market for this afterall. So I'm considering it. I'm looking into printing costs versus the ebook option, etc.
If any of you are interested in looking at the very rough draft, please email me at goredan@hotmail.com and I'd be happy to send it to you. There are several pictures missing at this stage but you can get the idea.
Right now I have her copy ready ... it includes about 4 extra pages which include info about her syndrome that she has in addition to the cleft issues so it's highly personalized but I've left those pages out for a general cleft book.
If this idea works ... I have already started on a book for Manny about tube feeding, wheelchair, muscular dystrophy.
So that's what we've been up to lately.
May 31, 2011
May 25, 2011
Hap-E Birfday to Youp Zoe, age 6
6 years ago today (give or take a few days), a little princess was born. I've wondered about her birthmother's reaction to see the cleft face (and other obvious "deformities"). I wonder if she knew before the birth or not until then. I've wondered if she was young and unmarried or maybe married and thrilled to be having a baby. Who knows.
I've also wondered about the next few days and how the decision went to take her to a place and leave her. Who did it? Was it hard?
They do not know how long she was in this "finding place" before someone found her. (It is only by the Grace of God that she was found ... she was not left in a "traditional" place.)
She eventually was taken to a poor Orphanage and was TINY. With such a severe cleft, it was difficult to feed her. She wasn't doing well.
A wonderful Chinese lady (Hannah) was assigned to go to the orphanage that day and get a baby to take to China Care Children's Home. She picked Zoe. She probably saved her life that day. And by the Grace of God, I have had the honor to meet and become friends with Hannah. (Who but God could orchestrate such a thing?)
Once she arrived there, she was nursed to health, given surgeries and then placed with a wonderful loving foster family.
She spent most of her first year with her. By the Grace of God, I've been able to meet her too. And even go to her house! (Again, who but God?)
Her last day with this foster family was her 2nd birthday. 3 weeks later, we went to pick her up.
Before I got her, I wrote a song called ""One Day" . And once she came home, I put that song to pictures of Zoe. If you want to see it ... Here is "One Day"
On her 3rd birthday, she was with us. Our first birthday together. That morning, before we were even out of PJs, I told her it was her birthday. She started singing her own version of Happy Birthday. I grabbed the camera and caught THIS ... and in case you don't understand a 3 year old born in China with a cleft lip and palate, she is saying, "Happ-E Birfday to Youp"~ LoL
These are just a VERY few ways God has been involved with this little girl since before her birth. We are blessed beyond belief to be her parents.
Happy 6th Birthday sweetheart!
I've also wondered about the next few days and how the decision went to take her to a place and leave her. Who did it? Was it hard?
She eventually was taken to a poor Orphanage and was TINY. With such a severe cleft, it was difficult to feed her. She wasn't doing well.
A wonderful Chinese lady (Hannah) was assigned to go to the orphanage that day and get a baby to take to China Care Children's Home. She picked Zoe. She probably saved her life that day. And by the Grace of God, I have had the honor to meet and become friends with Hannah. (Who but God could orchestrate such a thing?)
Her last day with this foster family was her 2nd birthday. 3 weeks later, we went to pick her up.
Before I got her, I wrote a song called ""One Day" . And once she came home, I put that song to pictures of Zoe. If you want to see it ... Here is "One Day"
On her 3rd birthday, she was with us. Our first birthday together. That morning, before we were even out of PJs, I told her it was her birthday. She started singing her own version of Happy Birthday. I grabbed the camera and caught THIS ... and in case you don't understand a 3 year old born in China with a cleft lip and palate, she is saying, "Happ-E Birfday to Youp"~ LoL
Now today, I put this picture (below) as my Facebook picture. It's the earliest picture we have of her. You can tell she is tiny and frail. Today, a friend (who has been to China) said she's seen this shirt before. I asked when and she said last summer that a little boy arrived and he was so tiny that their regular clothes didn't fit on him. They found THIS shirt in the back of the clothing bin.
 |
| Zoe in the shirt ... about age 3 weeks. |
 |
| Apparently this little guy needed the same shirt last summer (I was told it was one of the few outfits small enough for him). So while I don't know who this little guy is exactly, I feel the need to pray extra for him. Join me will you? |
 |
| Just for perspective of how tiny he is and how tiny Zoe was. |
Happy 6th Birthday sweetheart!
May 23, 2011
Dentist and the ER
Zoe has been home sick with pneumonia and residual cough for almost a week. She felt finally well enough to go back to school today ... but not before a stop at the dentist first.
We knew her teeth were bad ...but I had no clue just HOW bad. (sigh)
When we first got home from China almost 4 years ago, we immediately took her to this dentist and he worked on 10 of her 15 teeth. Well... we're about that bad again. (Yes she brushes ... well. Cleft kids tend to have a lot of issues with porus teeth and cavities.)
After many xrays, they made their plan. They won't have an exact plan until he talks to the Craniofacial surgeon but he has his proposal. Basically, he will put silver crowns on several teeth (try to save them until it's time for them to fall out and the silver crowns are the best bet). He will also extract several teeth. The problem is... 3 of the ones he needs to extract (due to extensive nerve involvement) are IN the palate. If he takes them out, they run the risk of collapsing her palate. But if he extracts them and they immediately start working on palate expansion in preparation for the bone graft.
Basically, her 3 silver crowns she has are fine. Her 3 permanent teeth she has are fine. The rest ... ALL are getting work! There is so much work to be done, he wants to take her to the hospital and put her under and do it all at once. (Much more merciful this way.)
Now about the other reason we were there ... the Cleft surgeon wanted to get a Panorex (panoramic view of her teeth to see what teeth might be erupting soon). HIS take on it was that the bone graft would need to be done in about 6-9 months. But he also said this wasn't his call. Her xrays have already been forwared to the surgeon. But if she agrees, this means we need to start fairly soon with the Orthodontist to work on expanding her palate.
So ... now we wait for the VPI test (to see if she needs pharyngeal flap surgery) and if so, they'll combine the teeth and that surgery. If not, we'll do the dental work soon. In the meantime, she's on antibiotic as she currently has abcesses. (Poor baby! She must be in so much pain but never says anything.)
I eventually got her back to school. And then I noticed that Manny's one cast (remember, he wiggled out of the other one on Saturday) was slipping. Several of his toes were no where to be found. The toes I *COULD* see were turning blue and he was in pain. So I prayed about it and felt I needed to get him to the ER. In the van, I tried one time to see if I could slip it off (it was that low). And he SCREAMED. So ... no.
Into our Local ER. The front desk nurse couldn't figure out what I needed ... even though I provided him the script from the PT/orthotist which says this child is in a serial casting program, it's only for stretching, not for breaks or surgery. The note says if a child presents with pain, they are to remove the cast and not recast it. Seemed straight forward to me. I showed him the green line where his toes WERE and where his toes were now. Thankfully a second desk triage nurse understood and sent us right through.
Once in the back, we got a nurse we've had before. In fact, the last time I was there, she was telling me about her granddaughter who'd just been diagnosed with heart hole and wanted prayer and advice on a good cardiologist. So today I asked about her and there was a praise report!
And then the ER doc was one we've had before. He immediately knew what to do and calmly ordered the right equipment. The last time there, he was very concerned about Manny as his heart rate was almost 200. He was really trying to get to the bottom of the diagnosis. So today I told him that even though it was unrelated, we knew his diagnosis. He asked the complications and I told him. One is lung ... and he immediately walked over to listen to his lungs. (So sweet.)
I loved that it was a doc and nurse who knew us so they didn't think we were nuts or anything.
The guy cutting the cast off was ... uh, scared. I don't know why he was the guy but he was scared. He kiddingly asked if I'd sign a waiver if he accidentally cut the baby. I told him how they usually cut it off and coached him through it. He did great. He was much relieved when it came off. Manny was also thrilled and kept saying, "Boot off!"
The baby's foot looked HORRIBLE. There was a lot of skin abrasion. But the most concerning part was an actual cut on his foot (not from the guy who cut it off). I have no clue how there could be such an injury on his foot. Strange. His toes immediately started to look better. His circulation was being cut off quickly. I don't know how long it would have been before there was a major problem ... but not long. That's for sure. I made the right call.
We were in and out in like 1 hour. (record). And the whole time, Manny was quite entertaining. He was talking (which they've never heard because he's usually very sick when we take him there). He saw the number 3 over the bed and said, "QRS". I told him it was the number three. To which he said, "4,5,6". He was crackin' everyone up!
The rest of the day was pretty uneventful. (Well, if you count that I still have the flu uneventful.)
We knew her teeth were bad ...but I had no clue just HOW bad. (sigh)
When we first got home from China almost 4 years ago, we immediately took her to this dentist and he worked on 10 of her 15 teeth. Well... we're about that bad again. (Yes she brushes ... well. Cleft kids tend to have a lot of issues with porus teeth and cavities.)
After many xrays, they made their plan. They won't have an exact plan until he talks to the Craniofacial surgeon but he has his proposal. Basically, he will put silver crowns on several teeth (try to save them until it's time for them to fall out and the silver crowns are the best bet). He will also extract several teeth. The problem is... 3 of the ones he needs to extract (due to extensive nerve involvement) are IN the palate. If he takes them out, they run the risk of collapsing her palate. But if he extracts them and they immediately start working on palate expansion in preparation for the bone graft.
Basically, her 3 silver crowns she has are fine. Her 3 permanent teeth she has are fine. The rest ... ALL are getting work! There is so much work to be done, he wants to take her to the hospital and put her under and do it all at once. (Much more merciful this way.)
Now about the other reason we were there ... the Cleft surgeon wanted to get a Panorex (panoramic view of her teeth to see what teeth might be erupting soon). HIS take on it was that the bone graft would need to be done in about 6-9 months. But he also said this wasn't his call. Her xrays have already been forwared to the surgeon. But if she agrees, this means we need to start fairly soon with the Orthodontist to work on expanding her palate.
 |
| Zoe being a "statue" ... the only pic that turned out unfortunately of her dentist visit. |
So ... now we wait for the VPI test (to see if she needs pharyngeal flap surgery) and if so, they'll combine the teeth and that surgery. If not, we'll do the dental work soon. In the meantime, she's on antibiotic as she currently has abcesses. (Poor baby! She must be in so much pain but never says anything.)
I eventually got her back to school. And then I noticed that Manny's one cast (remember, he wiggled out of the other one on Saturday) was slipping. Several of his toes were no where to be found. The toes I *COULD* see were turning blue and he was in pain. So I prayed about it and felt I needed to get him to the ER. In the van, I tried one time to see if I could slip it off (it was that low). And he SCREAMED. So ... no.
Into our Local ER. The front desk nurse couldn't figure out what I needed ... even though I provided him the script from the PT/orthotist which says this child is in a serial casting program, it's only for stretching, not for breaks or surgery. The note says if a child presents with pain, they are to remove the cast and not recast it. Seemed straight forward to me. I showed him the green line where his toes WERE and where his toes were now. Thankfully a second desk triage nurse understood and sent us right through.
 |
| This doesn't show proper depth perception. But the big toe is about 2 1/2 inches down from the green line. The little toes are not visible as the foot is so far down and rotated. |
Once in the back, we got a nurse we've had before. In fact, the last time I was there, she was telling me about her granddaughter who'd just been diagnosed with heart hole and wanted prayer and advice on a good cardiologist. So today I asked about her and there was a praise report!
And then the ER doc was one we've had before. He immediately knew what to do and calmly ordered the right equipment. The last time there, he was very concerned about Manny as his heart rate was almost 200. He was really trying to get to the bottom of the diagnosis. So today I told him that even though it was unrelated, we knew his diagnosis. He asked the complications and I told him. One is lung ... and he immediately walked over to listen to his lungs. (So sweet.)
I loved that it was a doc and nurse who knew us so they didn't think we were nuts or anything.
The guy cutting the cast off was ... uh, scared. I don't know why he was the guy but he was scared. He kiddingly asked if I'd sign a waiver if he accidentally cut the baby. I told him how they usually cut it off and coached him through it. He did great. He was much relieved when it came off. Manny was also thrilled and kept saying, "Boot off!"
The baby's foot looked HORRIBLE. There was a lot of skin abrasion. But the most concerning part was an actual cut on his foot (not from the guy who cut it off). I have no clue how there could be such an injury on his foot. Strange. His toes immediately started to look better. His circulation was being cut off quickly. I don't know how long it would have been before there was a major problem ... but not long. That's for sure. I made the right call.
 |
| poor little foot ... doesn't do justice to how horribly painful it looked |
We were in and out in like 1 hour. (record). And the whole time, Manny was quite entertaining. He was talking (which they've never heard because he's usually very sick when we take him there). He saw the number 3 over the bed and said, "QRS". I told him it was the number three. To which he said, "4,5,6". He was crackin' everyone up!
The rest of the day was pretty uneventful. (Well, if you count that I still have the flu uneventful.)
May 22, 2011
Birthdays times 2
Maybe I should continue my audition/application for the Real Mommies Show. Last night we had company and by the time we got to bed, it was very, very late. Manny is struggling with a cough (we're monitoring round the clock to hopefully keep it from going to pneumonia again lest I get to go back to the hospital). As a result, he's sleeping IN our bed where I can prop him better, rotate him more frequently and help him as he starts to cough/choke.
Very early this morning I was having a dream that I was about to throw up. I was a pretty realistic dream. Finally woke up and realized, *I* had to throw up. I barely made it to the bathroom in time. (Other flu like conditions accompanied it and I'll leave it at that.) Crawled back to bed and couldn't believe it ... Manny slept until 11am. Seriously! NEVER has he done that. I know I needed the sleep and it was probably good for him to have the extra sleep considering whatever it is he's fighting.
But the flu conditions continued. The other kids had slept in too (thankfully), had made themselves bowls of cereal and were watching TV. They were a bit worried about us they said since it was so late. I eventually drug myself out of bed about noon. Dan made brunch.
Why didn't I just stay in bed? Today is party day. This year for the first time, we've decided to do a combined party for Luke (who turned 8 on May 9) and Zoe (who will turn 6 on May 25). And that day is today. People are coming. Cakes are baked. Presents are bought. I'd have TWO very disappointed kids on my head.
I convinced Dan to take all the kids to the park around the corner. It's shady so they won't melt in this heat. They need to run some steam off. And I can decorate these cakes in half the time without "help". I'm all about the kids helping ... and they do ... all the time. But this time, I didn't have the energy to let them.
Zoe wanted the Lego Cake.
Luke wanted a self-portrait.
Hope they like them. (Luke was very specific about how he wanted it to look including the "chicklet" teeth!
The kids decorated the wall. They hung the happy birthday sign. They put 6 yellow streamers (Zoe's age and favorite color). And 8 green streamers (Luke's age and favorite color). They cut out a 6 and an 8. Then they made their names out of streamers. I think it looks very festive!
Very early this morning I was having a dream that I was about to throw up. I was a pretty realistic dream. Finally woke up and realized, *I* had to throw up. I barely made it to the bathroom in time. (Other flu like conditions accompanied it and I'll leave it at that.) Crawled back to bed and couldn't believe it ... Manny slept until 11am. Seriously! NEVER has he done that. I know I needed the sleep and it was probably good for him to have the extra sleep considering whatever it is he's fighting.
But the flu conditions continued. The other kids had slept in too (thankfully), had made themselves bowls of cereal and were watching TV. They were a bit worried about us they said since it was so late. I eventually drug myself out of bed about noon. Dan made brunch.
Why didn't I just stay in bed? Today is party day. This year for the first time, we've decided to do a combined party for Luke (who turned 8 on May 9) and Zoe (who will turn 6 on May 25). And that day is today. People are coming. Cakes are baked. Presents are bought. I'd have TWO very disappointed kids on my head.
I convinced Dan to take all the kids to the park around the corner. It's shady so they won't melt in this heat. They need to run some steam off. And I can decorate these cakes in half the time without "help". I'm all about the kids helping ... and they do ... all the time. But this time, I didn't have the energy to let them.
Zoe wanted the Lego Cake.
The kids decorated the wall. They hung the happy birthday sign. They put 6 yellow streamers (Zoe's age and favorite color). And 8 green streamers (Luke's age and favorite color). They cut out a 6 and an 8. Then they made their names out of streamers. I think it looks very festive!
May 19, 2011
"Real Housewife" of Tampa
I have never watched any of the episodes of any of the "Real Housewives" series ... but here is my audition/application to be on a new series I'm proposing ... "The Real Mommies".
To Whom it May Concern,
I would love to be on the new show. I am a mother of 6 kids. That right there should qualify me but if it's not enough let me describe just part of my day.
After very few hours of sleep last night (and that included a child in my bed who has casts on that scratch a lot), I finally dragged myself out of bed. The poopie diaper couldn't be ignored any longer. The youngest daughter, home from school with Pneumonia, wanted salad for breakfast. Why not.
The oldest son had let his room get so bad there were varmin running FROM his room. So today was the day we were to tackle it. I wore my best "can get dirty in these" clothes. Thankfully I have a forklift license for all the loads of cr*p that were in there.
Before I knew it, it was time for lunch ... uhhhh ... hot dogs. (Cringe) It was the only thing I could do in about 10 seconds and get right back in the room to fend off the varmin and piles of looming trash.
The 5 year old wanted to get in on the action of cleaning so I started her on the "arts and crafts" closet. Just the two bottom shelves (where she could reach).
While back in the son's room, I was sitting on the closet floor sorting throuh clothes he wears and doesn't wear. It was an interesting conversation with him about why he would/not wear certain clothes. Some was about fit, some about holes, but most was about the way it felt ... texture. He refused to wear certain clothes because they "felt weird" (t-shirts, polo shirts, you name it.)
While sitting there, I found some dirty (and I'll leave it at that) clothes and as I picked it up, roaches ran ALL OVER ME. (I shudder just to re-live this moment.)
Eventually I picked up the kids from school, did homework, made lunches, got clothes out for tomorrow, made dinner, reassembled the closet the 5 year old was working on. Unfortunately, I went into the girl's room and decided that we should empty at least 2 shelves in there too. (I was already in a bad enough mood, what's a little more.)
Time for bed. Dispense evening meds. Dig out the obligatory buggers from daughter with cleft's nose. A few rounds of "get back in bed". And then put the baby to bed. (All through the day, I have to deal with his tube that keeps giving an error message.)
And now that it's quiet, time to clean the kitchen from dinner and take the long deserved bath. I think 2 baths might be in order in fact.
So that's how a Real Mommy lives her life. Then again, if this isn't enough, try me again tomorrow ... afterall, today was a slow day!
Thanks for considering me.
To Whom it May Concern,
I would love to be on the new show. I am a mother of 6 kids. That right there should qualify me but if it's not enough let me describe just part of my day.
After very few hours of sleep last night (and that included a child in my bed who has casts on that scratch a lot), I finally dragged myself out of bed. The poopie diaper couldn't be ignored any longer. The youngest daughter, home from school with Pneumonia, wanted salad for breakfast. Why not.
The oldest son had let his room get so bad there were varmin running FROM his room. So today was the day we were to tackle it. I wore my best "can get dirty in these" clothes. Thankfully I have a forklift license for all the loads of cr*p that were in there.
Before I knew it, it was time for lunch ... uhhhh ... hot dogs. (Cringe) It was the only thing I could do in about 10 seconds and get right back in the room to fend off the varmin and piles of looming trash.
The 5 year old wanted to get in on the action of cleaning so I started her on the "arts and crafts" closet. Just the two bottom shelves (where she could reach).
While back in the son's room, I was sitting on the closet floor sorting throuh clothes he wears and doesn't wear. It was an interesting conversation with him about why he would/not wear certain clothes. Some was about fit, some about holes, but most was about the way it felt ... texture. He refused to wear certain clothes because they "felt weird" (t-shirts, polo shirts, you name it.)
While sitting there, I found some dirty (and I'll leave it at that) clothes and as I picked it up, roaches ran ALL OVER ME. (I shudder just to re-live this moment.)
Eventually I picked up the kids from school, did homework, made lunches, got clothes out for tomorrow, made dinner, reassembled the closet the 5 year old was working on. Unfortunately, I went into the girl's room and decided that we should empty at least 2 shelves in there too. (I was already in a bad enough mood, what's a little more.)
Time for bed. Dispense evening meds. Dig out the obligatory buggers from daughter with cleft's nose. A few rounds of "get back in bed". And then put the baby to bed. (All through the day, I have to deal with his tube that keeps giving an error message.)
And now that it's quiet, time to clean the kitchen from dinner and take the long deserved bath. I think 2 baths might be in order in fact.
So that's how a Real Mommy lives her life. Then again, if this isn't enough, try me again tomorrow ... afterall, today was a slow day!
Thanks for considering me.
May 18, 2011
What a difference a year makes
One year ago today, at 7:45am, my world changed. HERE is the link to the blog post.
If you were following along back then, you know. We got a baby in March. 6 weeks later he ended up in the hospital with pneumonia. And then one year ago today, we got the devastating news that he had maybe a month to live. I captured it all on blog if anyone wants to go re-live that. But suffice to say, we were devastated. CHEATED is the word I used often.
As I type this today, I can't believe the difference a year makes.
He no longer has this horrible diagnosis.
He is stronger.
He is bigger.
He is doing many, many more things.
He can move body parts that were previously "stuck".
He is astonishing the doctors and therapists.
We are planning his 2nd birthday party! That's not something I'd dared to hope for a year ago today.
In fact, last year at this time, I had friends who had given me a cyber baby shower for Manny. Mostly clothes, most that fit right then. But there were a few things that were size 2T. When we got the news that he wouldn't likely live for another month, my first thought was those clothes. (Silly how our mind works ... when it can't handle one thing, it turns attention to something else.) I began to wonder if I should return them for something closer to his current size. And someone told me to keep them out of hope.
He's just about to grow into them! He WILL get to wear them.
So I just want to say on this anniversary of a horrible day ... I am truly blessed. Life over the past 365 days has been some of my most challenging days. I've mustered up courage, faith, hope and energy that I didn't know I had. I've been granted more mercy than one person deserves. I've been blessed with friends and support from unlikely places. I've seen miracle after miracle.
I've watched a baby learn how to use his hands, arms, feet, neck, back. I've seen him discover a wonderfully fun world. I've heard laughter from the depths of a child's soul. I've seen delight in making new sounds and playing with toys. I've noticed a sense of humor and a playful spirit. I've watched a child learn about cars and trains and airplanes and all things "boy". I've spent many times just watching him sleep ... in complete silence ... and in awe of the miracle of life.
I've also watched a baby struggle for breath. I've watched him suffer. I've watched as doctors and nurses did horrible, unspeakable things to him as I just stood by helpless. I've spent so many hours begging God to give him life, heal him, save him, give him breath. I've spent many hours thanking Him for doing just that.
And through it all, we have both become stronger. We both appreciate life in a way that we couldn't have had we not gone through this.
One year later... He is ALIVE. And that right there, defies all logic, all conventional medical thought. THAT is a miracle.
One year ago, I was asking God to let him live. At the time, I had no clue if He would say Yes or No.
God said YES.
What else is there to say.
If you were following along back then, you know. We got a baby in March. 6 weeks later he ended up in the hospital with pneumonia. And then one year ago today, we got the devastating news that he had maybe a month to live. I captured it all on blog if anyone wants to go re-live that. But suffice to say, we were devastated. CHEATED is the word I used often.
As I type this today, I can't believe the difference a year makes.
He no longer has this horrible diagnosis.
He is stronger.
He is bigger.
He is doing many, many more things.
He can move body parts that were previously "stuck".
He is astonishing the doctors and therapists.
We are planning his 2nd birthday party! That's not something I'd dared to hope for a year ago today.
In fact, last year at this time, I had friends who had given me a cyber baby shower for Manny. Mostly clothes, most that fit right then. But there were a few things that were size 2T. When we got the news that he wouldn't likely live for another month, my first thought was those clothes. (Silly how our mind works ... when it can't handle one thing, it turns attention to something else.) I began to wonder if I should return them for something closer to his current size. And someone told me to keep them out of hope.
He's just about to grow into them! He WILL get to wear them.
So I just want to say on this anniversary of a horrible day ... I am truly blessed. Life over the past 365 days has been some of my most challenging days. I've mustered up courage, faith, hope and energy that I didn't know I had. I've been granted more mercy than one person deserves. I've been blessed with friends and support from unlikely places. I've seen miracle after miracle.
I've watched a baby learn how to use his hands, arms, feet, neck, back. I've seen him discover a wonderfully fun world. I've heard laughter from the depths of a child's soul. I've seen delight in making new sounds and playing with toys. I've noticed a sense of humor and a playful spirit. I've watched a child learn about cars and trains and airplanes and all things "boy". I've spent many times just watching him sleep ... in complete silence ... and in awe of the miracle of life.
I've also watched a baby struggle for breath. I've watched him suffer. I've watched as doctors and nurses did horrible, unspeakable things to him as I just stood by helpless. I've spent so many hours begging God to give him life, heal him, save him, give him breath. I've spent many hours thanking Him for doing just that.
And through it all, we have both become stronger. We both appreciate life in a way that we couldn't have had we not gone through this.
One year later... He is ALIVE. And that right there, defies all logic, all conventional medical thought. THAT is a miracle.
One year ago, I was asking God to let him live. At the time, I had no clue if He would say Yes or No.
God said YES.
What else is there to say.
May 15, 2011
Mini vacay and Zoe cranio visit
Dan had his corporate yearly training meeting about an hour away from us. He already had the hotel room on a nice facility so we decided to make it a mini-vacation for us. The boys (Jacob, Sam and Luke) love to go to my Mom's house and play with my nephew. Zoe had to go with me to go to her appointment. Manny of course was going with me. So Kaley went too ... to help with Manny and also to not be the only girl in the all boy house.
We had fun in between the appointments. We went swimming. We went on a paddle boat. We hung out. Just the girls and the baby. (3 kids seems like such a breeze!)
Zoe's craniofacial appointment went much better than expected! First of all, her hearing was *mostly* in *almost* normal hearing range. That's great! She is in need of a lot of dental work (we knew that from looking at her teeth ourselves) and we have a plan in place to do it now.
Last year, they did a VPI study and it showed that the lateral walls of her throat were moving, the pharyngeal wall was not. (For those who don't know what I'm talking about ... a VPI is a study of the closure of the palate to produce certain sounds. The pharyngeal wall is the back of the throat, lateral walls are the side ones.) They scheduled a surgery to do a pharyngeal flap to help her produce those sounds. Surgery stopped.
This visit, I thought for sure they would immediately recommend her to do the surgery ASAP. But they said she sounded better. She does a lot of therapy (in school and with us). She is highly motivated and not frustrated so she works hard. She also does a lot of errors in her speaking (especially some odd tongue movements). So they couldn't tell what was going on. The surgeon didn't even feel comfortable doing the surgery without doing the test again. So ... if she fails it, we will do the surgery. If she doesn't, it's off. (So now you know the specific prayer we're asking.)
Secondly, we know that about age 6, this team does the bone graft. Zoe is 1 1/2 weeks from being 6. So I thought they'd want to do that immediately. But they said she was a bit on the small side and would love to wait until she is a tiny bit bigger if they can ... to give her more time to grow, especially her hip (that's the bone they use for the graft).
The surgeon and the Orthodontist were talking about the plan. When they want to do the bone graft, her mouth is like a triangle, very tiny in the front and wider in the back. They will have to do an expander first. The surgeon and I were talking and saying that she is already starting to lose teeth so she might NOT have the time to wait. They looked at her last panaromic view of her teeth and realized there was a fairly mature tooth root ... and that was almost 2 years ago. (They are trying to do the bone graft JUST before the teeth would naturally erupt ... they provide an "anchor" for the face.)
So the plan is this ... get a new panoramic view of her teeth this week. IF the teeth are not due to erupt soon, we can wait. But if they are any where close, we will need to start the prep work for the bone graft.
In summary, we are facing 0,1 or 2 surgeries in the near future based on the results of these 2 tests. We know we will eventually need the bone graft no matter what. But the P-Flap is something we're hoping to avoid.
The next few weeks will be full of visits for Zoe.
We had fun in between the appointments. We went swimming. We went on a paddle boat. We hung out. Just the girls and the baby. (3 kids seems like such a breeze!)
Zoe's craniofacial appointment went much better than expected! First of all, her hearing was *mostly* in *almost* normal hearing range. That's great! She is in need of a lot of dental work (we knew that from looking at her teeth ourselves) and we have a plan in place to do it now.
Last year, they did a VPI study and it showed that the lateral walls of her throat were moving, the pharyngeal wall was not. (For those who don't know what I'm talking about ... a VPI is a study of the closure of the palate to produce certain sounds. The pharyngeal wall is the back of the throat, lateral walls are the side ones.) They scheduled a surgery to do a pharyngeal flap to help her produce those sounds.
This visit, I thought for sure they would immediately recommend her to do the surgery ASAP. But they said she sounded better. She does a lot of therapy (in school and with us). She is highly motivated and not frustrated so she works hard. She also does a lot of errors in her speaking (especially some odd tongue movements). So they couldn't tell what was going on. The surgeon didn't even feel comfortable doing the surgery without doing the test again. So ... if she fails it, we will do the surgery. If she doesn't, it's off. (So now you know the specific prayer we're asking.)
Secondly, we know that about age 6, this team does the bone graft. Zoe is 1 1/2 weeks from being 6. So I thought they'd want to do that immediately. But they said she was a bit on the small side and would love to wait until she is a tiny bit bigger if they can ... to give her more time to grow, especially her hip (that's the bone they use for the graft).
The surgeon and the Orthodontist were talking about the plan. When they want to do the bone graft, her mouth is like a triangle, very tiny in the front and wider in the back. They will have to do an expander first. The surgeon and I were talking and saying that she is already starting to lose teeth so she might NOT have the time to wait. They looked at her last panaromic view of her teeth and realized there was a fairly mature tooth root ... and that was almost 2 years ago. (They are trying to do the bone graft JUST before the teeth would naturally erupt ... they provide an "anchor" for the face.)
So the plan is this ... get a new panoramic view of her teeth this week. IF the teeth are not due to erupt soon, we can wait. But if they are any where close, we will need to start the prep work for the bone graft.
In summary, we are facing 0,1 or 2 surgeries in the near future based on the results of these 2 tests. We know we will eventually need the bone graft no matter what. But the P-Flap is something we're hoping to avoid.
The next few weeks will be full of visits for Zoe.
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