I've shared before that the girls both attend a Magnet School for the performing and visual arts. At the end of every school year, the school hosts an open house whereas kids artwork can be displayed as well as see various performances throughout the campus. Today was our school's open house.
Rachel's class learned and performed the Virginia Reel. They then taught three other classes how to do the dance as well. Rachel ended up being one of the lead couples! She is the one in the blue gingham dress and pigtails.
Wednesday, May 25, 2011
Tuesday, May 24, 2011
Rachel's "Special Tooth"
Rachel had this tooth that was in the cleft of her alveolar ridge (the clefting in the gum). It was high up in her gum, and you really couldn't see it unless you lifted her lip. We've always called it her "special tooth".
This tooth has been a constant headache for years. It's hard to brush and hard to keep clean.
When Rachel had a dental appointment in March, this tooth had developed some decay on the backside of the tooth. Since her bone grafting surgery in November, the tooth had adjusted a little bit and was more exposed.
After consulting with Rachel's plastic surgeon, he gave his okay to have the tooth filled or extracted. She was far enough post op that either was fine.
We opted for the extraction.
So this afternoon, Rachel had her special tooth pulled. While this picture is blurry, this gives you an idea of how Rachel's upper teeth looked, prior to the extraction. You can see a tooth that is a little darker on the top, growing in sideways, that is her 'special tooth'. Or shall I say "was". It's now in a little treasure box waiting to be placed under her pillow.
It was a little sad watching this tooth we've referred to as her "special tooth' be pulled. It's just another step in this journey.
Our Pediatric dentist is awesome! Her prescription for pain relief...a free yogurt at Golden Spoon!!! Which is totally awesome because that's always where we stop on our way home from dental appointments. Here Rachel is holding her Rx, mouth full of gauze, and red marks on her nose from where the nitrous gas mask made indentations.
Rachel did awesome with the extraction. Our dentist is the best and makes sure there's no pain and the experience is overall a pleasant one, which in Rachel's case, with as much work as she's had done on her mouth and will have in the future is a huge bonus!
This tooth has been a constant headache for years. It's hard to brush and hard to keep clean.
When Rachel had a dental appointment in March, this tooth had developed some decay on the backside of the tooth. Since her bone grafting surgery in November, the tooth had adjusted a little bit and was more exposed.
After consulting with Rachel's plastic surgeon, he gave his okay to have the tooth filled or extracted. She was far enough post op that either was fine.
We opted for the extraction.
So this afternoon, Rachel had her special tooth pulled. While this picture is blurry, this gives you an idea of how Rachel's upper teeth looked, prior to the extraction. You can see a tooth that is a little darker on the top, growing in sideways, that is her 'special tooth'. Or shall I say "was". It's now in a little treasure box waiting to be placed under her pillow.
It was a little sad watching this tooth we've referred to as her "special tooth' be pulled. It's just another step in this journey. Our Pediatric dentist is awesome! Her prescription for pain relief...a free yogurt at Golden Spoon!!! Which is totally awesome because that's always where we stop on our way home from dental appointments. Here Rachel is holding her Rx, mouth full of gauze, and red marks on her nose from where the nitrous gas mask made indentations.
Rachel did awesome with the extraction. Our dentist is the best and makes sure there's no pain and the experience is overall a pleasant one, which in Rachel's case, with as much work as she's had done on her mouth and will have in the future is a huge bonus!
Wednesday, May 11, 2011
Playing Catch Up
It's been almost two months since I've blogged on any of my three blogs. It seems life has just been busy, or I've been too busy, which is probably the better thing to say.
The last few months have had a few events worthy of sharing...
In Mid April, Rachel's 1st grade class, along with another class, walked about a mile to the local Stater Bros for a tour. Thankfully it was a nice overcast morning and the walk was actually quite nice. Having known someone who's worked for the company for 40+ years (my Dad!), he worked his magic of knowing the right people and we had an amazing tour! Just as good as the one Rachel had when she was in preschool. Although on this trip, the kids each received little nylon Stater Bros backpacks! Which was really cool!
Two weekends ago, Rachel participated in her very first Tae Kwon Do Tournament! She was so very excited for the event and did awesome! She got 2nd place for her Purple Belt Form, and she came in 4th for sparring! She was very pleased with herself and her trophy, so much so that she took the trophy to school the very next day to share!
Last week marked the one year anniversary of Rachel receiving speech. She's come a long way over the last year and I think we're finally on the homestretch of nearing the end of weekly therapy. Rachel loves to talk, and sometimes talks nonstop. Over the weekend she mastered two new words with the "R" sound we've been working on - 'Dork' and 'Nerd'. It's nice to be paying out the bucks for speech therapy so that you can understand when you're child calls you names. LOL.
Rachel has less than four weeks left of the 1st grade and is doing extremely well! When the end of the school year approaches and it's been a great school year, with an awesome teacher, I tend to get sad. And that is exactly how I feel in regards to Rachel's teacher. She's absolutely amazing and I am so glad I've been able to be a part of her class every Monday morning and be available to help her in various other ways throughout the school year. Teacher requests have already been made for next school year and hopefully Rachel will have the same teacher Hannah had for 2nd grade and it'll be a good school year once again.
In two weeks Rachel sees her dentist and will more than likely have what we refer to as her "Special Tooth" extracted. This tooth is where her cleft was in her gum and always been quite a challenge to keep clean. Now that the back is exposed more, thanks to the bone grafting surgery in November, the back is decaying and it either needs to be filled, or extracted. After consulting with our plastic surgeon, he said since it's been at least 3 months since bone grafting, then either route is fine. Since it is a baby tooth we'll probably go the extraction route. We'll wait and see what our dentist wants to do the day of the appointment.
It's almost been 6 months since Rachel's surgery. It's hard to believe it's been that long, and yet, hard to believe it's only been that short of time. We have a follow up appointment the first week of June with her plastic surgeon and it'll be nice to hear what he says and thinks 6 months post op. That appointment also falls after Rachel's dental appointment, so he'll be able to see how that went as well. The cartilage in Rachel's nose is finally starting to loosen. Her nose has been so hard since surgery, and now, just as Dr. Martin had predicted, it's all softening. I've been following the story of a 9 year old boy who had his bone graft surgery this week, and all I can say is, I'm so thankful to have that part of the journey behind us...
The last few months have had a few events worthy of sharing...
In Mid April, Rachel's 1st grade class, along with another class, walked about a mile to the local Stater Bros for a tour. Thankfully it was a nice overcast morning and the walk was actually quite nice. Having known someone who's worked for the company for 40+ years (my Dad!), he worked his magic of knowing the right people and we had an amazing tour! Just as good as the one Rachel had when she was in preschool. Although on this trip, the kids each received little nylon Stater Bros backpacks! Which was really cool!
Two weekends ago, Rachel participated in her very first Tae Kwon Do Tournament! She was so very excited for the event and did awesome! She got 2nd place for her Purple Belt Form, and she came in 4th for sparring! She was very pleased with herself and her trophy, so much so that she took the trophy to school the very next day to share!
Last week marked the one year anniversary of Rachel receiving speech. She's come a long way over the last year and I think we're finally on the homestretch of nearing the end of weekly therapy. Rachel loves to talk, and sometimes talks nonstop. Over the weekend she mastered two new words with the "R" sound we've been working on - 'Dork' and 'Nerd'. It's nice to be paying out the bucks for speech therapy so that you can understand when you're child calls you names. LOL. Rachel has less than four weeks left of the 1st grade and is doing extremely well! When the end of the school year approaches and it's been a great school year, with an awesome teacher, I tend to get sad. And that is exactly how I feel in regards to Rachel's teacher. She's absolutely amazing and I am so glad I've been able to be a part of her class every Monday morning and be available to help her in various other ways throughout the school year. Teacher requests have already been made for next school year and hopefully Rachel will have the same teacher Hannah had for 2nd grade and it'll be a good school year once again.
In two weeks Rachel sees her dentist and will more than likely have what we refer to as her "Special Tooth" extracted. This tooth is where her cleft was in her gum and always been quite a challenge to keep clean. Now that the back is exposed more, thanks to the bone grafting surgery in November, the back is decaying and it either needs to be filled, or extracted. After consulting with our plastic surgeon, he said since it's been at least 3 months since bone grafting, then either route is fine. Since it is a baby tooth we'll probably go the extraction route. We'll wait and see what our dentist wants to do the day of the appointment.
It's almost been 6 months since Rachel's surgery. It's hard to believe it's been that long, and yet, hard to believe it's only been that short of time. We have a follow up appointment the first week of June with her plastic surgeon and it'll be nice to hear what he says and thinks 6 months post op. That appointment also falls after Rachel's dental appointment, so he'll be able to see how that went as well. The cartilage in Rachel's nose is finally starting to loosen. Her nose has been so hard since surgery, and now, just as Dr. Martin had predicted, it's all softening. I've been following the story of a 9 year old boy who had his bone graft surgery this week, and all I can say is, I'm so thankful to have that part of the journey behind us...
Wednesday, March 16, 2011
Update: Speech Therapy
It's been a while since I've updated about Rachel's ongoing speech therapy.
Rachel continues to receive one on one Speech Therapy once a week here in the comfort of our own home. We are so blessed to have a speech therapist that comes to our home to do speech therapy with Rachel. Dr. D'Antonio spends countless hours outside of therapy time preparing and planning for Rachel's speech. We know how lucky we are, for if Rachel was receiving Speech Therapy at school, it would be in a group setting, and not tailored for Rachel's specific speech needs.
It's hard to believe that we're coming up on eleven months of therapy. With the exception of three, maybe four times, we've had therapy every week since May of last year! It's encouraging to see all the hard work paying off through compliments of other people, and the clearness of Rachel's speech.
We've recently moved on to the last sound that Rachel needs to master. That sound is the sound of the letter "R". This task will take some time and then it'll be on to some "R" blends and ultimately working on carrying over things learned to conversational speech.
A lot of weeks, Rachel doesn't open up and talk excessively with Dr. D when she comes to do therapy. Dr. D will ask about Rachel's school day and the previous weekend. Sometimes, most of the time, it's like pulling teeth to get Rachel to talk. Which is frustrating because at the dinner table she's the last one eating as the rest of us have finished eating as she's been talking the entire time. LOL. So today, we did speech therapy in a different way...
Today, we went to lunch with Dr. D'Antonio and then went to Toys R Us to help point out some games that could easily be converted to games she can use for speech fun. Being away from the kitchen table, the usual place of therapy, proved to be very helpful. Dr. D'Antonio said at the end of our time together that what she got today was equivalent to what three weeks of therapy would have been. Rachel was talkative and relaxed and had fun looking for sounds she's worked on in the kids menu. It definitely was a nice change for therapy. It also gave Dr. D an idea as to where to go from here. It was a successful outing that may have to be worked again.
Rachel continues to receive one on one Speech Therapy once a week here in the comfort of our own home. We are so blessed to have a speech therapist that comes to our home to do speech therapy with Rachel. Dr. D'Antonio spends countless hours outside of therapy time preparing and planning for Rachel's speech. We know how lucky we are, for if Rachel was receiving Speech Therapy at school, it would be in a group setting, and not tailored for Rachel's specific speech needs.
It's hard to believe that we're coming up on eleven months of therapy. With the exception of three, maybe four times, we've had therapy every week since May of last year! It's encouraging to see all the hard work paying off through compliments of other people, and the clearness of Rachel's speech.
We've recently moved on to the last sound that Rachel needs to master. That sound is the sound of the letter "R". This task will take some time and then it'll be on to some "R" blends and ultimately working on carrying over things learned to conversational speech. A lot of weeks, Rachel doesn't open up and talk excessively with Dr. D when she comes to do therapy. Dr. D will ask about Rachel's school day and the previous weekend. Sometimes, most of the time, it's like pulling teeth to get Rachel to talk. Which is frustrating because at the dinner table she's the last one eating as the rest of us have finished eating as she's been talking the entire time. LOL. So today, we did speech therapy in a different way...
Today, we went to lunch with Dr. D'Antonio and then went to Toys R Us to help point out some games that could easily be converted to games she can use for speech fun. Being away from the kitchen table, the usual place of therapy, proved to be very helpful. Dr. D'Antonio said at the end of our time together that what she got today was equivalent to what three weeks of therapy would have been. Rachel was talkative and relaxed and had fun looking for sounds she's worked on in the kids menu. It definitely was a nice change for therapy. It also gave Dr. D an idea as to where to go from here. It was a successful outing that may have to be worked again.
Friday, March 04, 2011
Save Smile Train
It's no surprise that we have a soft place in our hearts for children with cleft lips and palates.
Rachel's lip was fixed at 5 months of age. We in the United States are very blessed to have the health care we have, despite the threats of changes that might someday come.
Children living outside the United States aren't so fortunate. Some children with cleft lips don't have their lip repaired until their well out of of their toddler stage, some even as old as ten years old, sometimes older.
There are two organizations that go into these countries and help provide the surgeries to restore smiles to these children. Operation Smile and the Smile Train are both known for their efforts in this area. And while they both focus on the same sort of problem, their approach is very much different. It wasn't until Rachel's Speech Therapist came into our life last May that we really learned the difference between the two.
Operation Smile takes medical teams into the areas for a few weeks at a time and provides the surgeries for these children, when their time is up, they leave.
Smile Train goes in and teaches the existing doctors in the country to perform the surgeries themselves, thus being able to ultimately treat many more children within their country.
Currently, there is an attempt to merge the two organizations. There is a petition circulating for people to sign, to bring to the attention of the New York Attorney General to stop this merge.
The petition is to save Smile Train and it's way of practice.
The greater the numbers on the petition, the better, so if you would, would you please follow this link and sign the petition.
Your support would be very much appreciated!
Save Smile Train - The Petition
Rachel's lip was fixed at 5 months of age. We in the United States are very blessed to have the health care we have, despite the threats of changes that might someday come.
Children living outside the United States aren't so fortunate. Some children with cleft lips don't have their lip repaired until their well out of of their toddler stage, some even as old as ten years old, sometimes older.
There are two organizations that go into these countries and help provide the surgeries to restore smiles to these children. Operation Smile and the Smile Train are both known for their efforts in this area. And while they both focus on the same sort of problem, their approach is very much different. It wasn't until Rachel's Speech Therapist came into our life last May that we really learned the difference between the two.
Operation Smile takes medical teams into the areas for a few weeks at a time and provides the surgeries for these children, when their time is up, they leave.
Smile Train goes in and teaches the existing doctors in the country to perform the surgeries themselves, thus being able to ultimately treat many more children within their country.
Currently, there is an attempt to merge the two organizations. There is a petition circulating for people to sign, to bring to the attention of the New York Attorney General to stop this merge.
The petition is to save Smile Train and it's way of practice.
The greater the numbers on the petition, the better, so if you would, would you please follow this link and sign the petition.
Your support would be very much appreciated!
Save Smile Train - The Petition
Thursday, February 24, 2011
Spring Pictures 2011
We recently received the girls' Spring pictures back and I couldn't be happier with how cute Rachel's turned out!!! 
This is her first professional picture with her new nose and isn't she absolutely adorable? :) Our baby is looking so grown up!
This is her first professional picture with her new nose and isn't she absolutely adorable? :) Our baby is looking so grown up!
Thursday, February 17, 2011
3 Months Post Op
On one had it's hard to believe it's been 3 months since Rachel's surgery. And on the other hand it's hard to believe it's ONLY been 3 months since surgery.
Rachel is doing great. Totally back to normal. Nothing to report other than just updating with a 3 month post op picture! She just keeps getting cuter and cuter...
Rachel is doing great. Totally back to normal. Nothing to report other than just updating with a 3 month post op picture! She just keeps getting cuter and cuter...
Wednesday, January 12, 2011
Rachel's Journey Through Pictures: Updated
Three years ago I put together a slide show of Rachel's journey up until that point.
With the most recent hurdle of this journey now behind us, it was time to add pictures to the slideshow...
God is Good, isn't He???
With the most recent hurdle of this journey now behind us, it was time to add pictures to the slideshow...
Monday, January 10, 2011
Post Op Appointment - Almost 8 weeks
We saw Rachel's plastic surgeon this afternoon for another post op appointment. He wanted to see her to continue monitoring how things went as the stitches continued to dissolve and swelling continued to decrease (all the visible swelling to us is gone, but to a plastic surgeon he sees differently). 
The visit was quick and sweet. He checked her over inside and out and was very happy with how the surgery had gone. He'd been looking at her pre-op pictures before coming into the room, so he was able to compare what was 'before' and the 'now'.
We'll see him again at the end of February. Prior to seeing him, we'll get an X-Ray of Rachel's bone graft to check it's progress and make sure it 'took'. He said he doesn't expect to see that it didn't take, as there would be other signs of rejection at this point. But an X-ray of the area will be the confirmation needed for future orthodontic work that is in Rachel's future. After a few pictures for her chart, we were on our way...
For those wondering how Rachel's incision on her hip is doing, it looks amazing! Dr. Martin said that in a year, because it's so paper thin, you might not even see the scar at all!
Again, we're so thankful to have this behind us, and for all the prayers that have been said for Rachel and for us. We are so blessed, so very blessed...
The visit was quick and sweet. He checked her over inside and out and was very happy with how the surgery had gone. He'd been looking at her pre-op pictures before coming into the room, so he was able to compare what was 'before' and the 'now'.
We'll see him again at the end of February. Prior to seeing him, we'll get an X-Ray of Rachel's bone graft to check it's progress and make sure it 'took'. He said he doesn't expect to see that it didn't take, as there would be other signs of rejection at this point. But an X-ray of the area will be the confirmation needed for future orthodontic work that is in Rachel's future. After a few pictures for her chart, we were on our way...For those wondering how Rachel's incision on her hip is doing, it looks amazing! Dr. Martin said that in a year, because it's so paper thin, you might not even see the scar at all!
Again, we're so thankful to have this behind us, and for all the prayers that have been said for Rachel and for us. We are so blessed, so very blessed...
Monday, January 03, 2011
Some Tips Following Bone Graft Surgery
When we learned back in August that Rachel would be having her bone graft, I immediately went on a search for other families that had already endured this surgery. I searched and searched for personal blogs, message boards, somewhere I could ask my questions and get answers from another Mama that had already walked in these shoes.
My search was unsuccessful as far as those places.
Eventually, I did find one Mom through a Facebook page who's son had had a bone graft this last Spring. I sent a private message asking if I could ask questions. It took weeks for her to answer. And when she did answer, all of her answers to my questions were extreme, it was borderline anxiety producing thinking that's the road that soon laid ahead for Rachel, and for us.
One of my goals of keeping this blog has not only been to keep family and friends up to date with Rachel and her going ons of having been born with a cleft lip and cleft palate, but it has also been my goal to help journalize the cleft specific things to offer help, ideas, and encouragement to all the families that are behind us on this road. I've 'met' many a wonderful Mama's all across the United States, and some even outside of the U.S, where we share the common bond of having a child born with a cleft of some sort.
For the past six weeks, I've been jotting down notes, tips, and suggestions for all of YOU, who will someday in your child's future face a bone grafting to the alveolar ridge. I hope that this post is of help to someone...
******************************************** Length of Surgery
The length of surgery will be different for every child depending on the severity of the alveolar cleft. When I asked at our pre-op appointment for an estimate as to how long surgery would be, we were told 2-3 hours, but that our plastic surgeon doesn't stop until he's completely happy with his work, which is a nice quality to have in a plastic surgeon when having work done on ones face. :)
Rachel's surgery took two and a half hours from start to finish, and that included a nose revision.
Dietary Restrictions
Following surgery, Rachel was placed on a soft food/no chew diet. She was allowed juices, ice cream, soups. Once home, we did applesauce, ice cream, frozen soft yogurt, pudding, mashed potatoes, soups, shakes, graham crackers broken into pieces and soaked in milk.
At our post op appointment, just 5 days after surgery, Dr. Martin told us we could do a soft food diet that included soft foods such as mac and cheese, scrambled eggs, refried bean cups, broken up soft french fries, anything soft that could be chewed with the back teeth.
To get protein in Rachel, we tore up slices of cheese, tore up lunch meat, cooked and diced hot dogs, I took spaghetti and cut the noodles into tiny pieces with my kitchen scissors and served with marina sauce.
After another post op appointment, we went a little further. Cooking and dicing up chicken tenders, mandarin oranges broken into pieces, apples diced up into bite size pieces.
She was not allowed anything hard or sharp, such as chips or crackers. And nothing that required taking a bite with her front teeth, things such as sandwiches (although I did make a PB&J sandwich and cut into tiny pieces to eat in the back of her mouth), chicken wings, pizza, etc, etc.
Rachel was on a soft food/ easy to chew diet for 3 1/2 weeks.
One of the things I found helpful was using plastic spoons. One of the local frozen yogurt places has these great spoons that I save and use in the girls' lunches. They came in handy for Rachel's recovery. They have a very skinny end that allowed for successful dropping into Rachel's mouth the week following surgery. We did not want to take any chances of a metal spoon hitting that sensitive bone graft area, so we used the plastic spoon, and we fed her the first week post op.
Rachel was also not allowed straws or sports top bottles for 3 1/2 weeks following surgery. I found the best thing was to have paper cups sitting on the counter for her to use. A paper cup, if the upper gum or lip should be hit, would be less painful than a hard plastic or glass cup. When she returned to school, I sent a paper cup and a water bottle to sit on her teachers desk.
Feeding Rachel was been VERY difficult. Coming up with things for her to eat has been very stressful. She's become very picky since surgery and sadly has lost 2 1/2 lbs, which on a little girl, is very noticeable. For almost two weeks after Dr. Martin lifted all food restrictions, Rachel was very hesitant to eat. Getting her to eat was very difficult and very stressful as we did not want to see her loose any more weight. But once her fears subsided, and she even began chewing and taking bites with her front teeth, she's been an eating machine! And that's okay with us!
Physical Activity/Restrictions
Rachel was up and walking hours following surgery. It is said that the most painful part of having a bone graft is the pain that comes from the donor site, the place where the tissue was taken, and in Rachel's case, it was her left hip. From Day 1, she had no limp, no pain to complain of from her hip, nothing.
Once school resumed, two days shy of being two weeks post op, Rachel did not participate in PE, or recess. The chance that a ball hit her nose was too great, and would be extremely painful. So I packed her a back pack of new coloring books, new crayons, a tablet of paper, and some other fun things to do while she was 'benched'.
She resumed Tae Kwon Do class, two days shy of it being three weeks post op, and that might have been a little bit too soon, as she woke up the next morning complaining of her leg (specifically the leg where tissue was taken) hurt. It was probably too much jumping and kicking about.
When Rachel was just a few days shy of four weeks post op, she went back to playing at recess and is participating in some PE, she still sat out on the days that PE involved a ball. LOL.
We're thinking that once she returns to school next week, after our three week Christmas vacation, she can go back to playing without any limitations, at that point, she'll almost be eight weeks post op.
Pain Management
Rachel received morphine while in the recovery room for pain, but once in a room, and upon being discharged, she received Tylenol with Codeine. We were told that the only reason she was kept overnight in the hospital was due to the pain and the access of having better pain control as an inpatient.
There were two times in the night that I had the nurse page the on call doctor because it was evident that the pain medicine was not enough. Sadly, our pages were never returned and come morning, we discovered that Rachel had been severely under medicated through the night. When she should have been receiving 10ml of Tylenol with Codiene, she was only being given 2ml, the dosage appropriate for that of an infant. Once we got the proper amount of pain medicine in her system, things changed drastically for the better.
If you should suspect that the pain meds you're child might receive following a surgery might not be enough or doing it's job the way a pain drug should, be persistent about bugging the nurses to page the doctors on call, double checking they are paging the right doctors on call, even questioning the nurse that what she is administering is the proper dosage.
We were sent home with Tylenol with codeine, the proper dosage. And for the first three days, we gave it like clock work, every 4-6 hours as directed. For two nights, we even set our alarm in the night to get up and give her something in her tummy and give her a dosage of pain medication. It was important to break the pain cycle.
With Rachel, you could tell the pain meds began to wear off about 30-45 minutes before the next dosage was due. By Post Op Day 5, we were giving Rachel regular over the counter Tylenol. And by 1 week post op, she was pain free.
Bruising / Swelling
When I initially asked at our Pre Op appointment as to how much bruising we should expect with the nose job, I was told that because they were working with cartilage and not bone, there would be no bruising. That was not the case for Rachel.
Rachel's face began to swell the day after surgery. The worst of the swelling was at 3 days Post Op. And then from that day on, the swelling started to slowly decrease.
As for bruising, the bruising surfaced under her eye and her upper cheek bone on the side of her face where the majority of the work was done (her right side) on Day 4. It was a yellow bruising which usually is an indicator of deep tissue trauma. The bruising was gone within a week.
Nasal Stents
The morning following surgery, Rachel hated those nasal stents with a passion. She screamed, she hollered, she wanted them out! She continued to complain about them, but never once did she try to take them out.
Our plastic surgeon explained to me at the first post op appointment that Rachel's nose had a lot of scar tissue and scar tissue has a tendency to go back to it's original shape very easily. So he always prefers to leave nasal stents in place anywhere for one to three weeks post op. He also told us that it could take up to 6 months Post Op for the nose to settle down and become the new permanent look.
Rachel had nasal stents for twelve days. She was not self conscious about them. She went to church with them in, went out in public with them in, even went back to school for one day with them in.
Returning to School
This is one area that will be different for everyone. We scheduled Rachel's surgery for a time in which she was off track from school. She missed NO school due to surgery, or the time it took to recover afterwards. Rachel returned to school on the very first day back from vacation, which was 12 days post op.
******************************************** These things were the things I felt most important to share and offer some advice.
However, if you're reading this post, and you have questions, perhaps something I didn't cover, please leave a comment, or sign Rachel's guest book and leave your email address and I will email back!
I would love to be able to answer questions or put aside any fears you might have if you're on the brink of having a bone graft done to your little one.
My search was unsuccessful as far as those places.
Eventually, I did find one Mom through a Facebook page who's son had had a bone graft this last Spring. I sent a private message asking if I could ask questions. It took weeks for her to answer. And when she did answer, all of her answers to my questions were extreme, it was borderline anxiety producing thinking that's the road that soon laid ahead for Rachel, and for us.
One of my goals of keeping this blog has not only been to keep family and friends up to date with Rachel and her going ons of having been born with a cleft lip and cleft palate, but it has also been my goal to help journalize the cleft specific things to offer help, ideas, and encouragement to all the families that are behind us on this road. I've 'met' many a wonderful Mama's all across the United States, and some even outside of the U.S, where we share the common bond of having a child born with a cleft of some sort.
For the past six weeks, I've been jotting down notes, tips, and suggestions for all of YOU, who will someday in your child's future face a bone grafting to the alveolar ridge. I hope that this post is of help to someone...
The length of surgery will be different for every child depending on the severity of the alveolar cleft. When I asked at our pre-op appointment for an estimate as to how long surgery would be, we were told 2-3 hours, but that our plastic surgeon doesn't stop until he's completely happy with his work, which is a nice quality to have in a plastic surgeon when having work done on ones face. :)
Rachel's surgery took two and a half hours from start to finish, and that included a nose revision.
Dietary Restrictions
Following surgery, Rachel was placed on a soft food/no chew diet. She was allowed juices, ice cream, soups. Once home, we did applesauce, ice cream, frozen soft yogurt, pudding, mashed potatoes, soups, shakes, graham crackers broken into pieces and soaked in milk.
At our post op appointment, just 5 days after surgery, Dr. Martin told us we could do a soft food diet that included soft foods such as mac and cheese, scrambled eggs, refried bean cups, broken up soft french fries, anything soft that could be chewed with the back teeth.
To get protein in Rachel, we tore up slices of cheese, tore up lunch meat, cooked and diced hot dogs, I took spaghetti and cut the noodles into tiny pieces with my kitchen scissors and served with marina sauce.
After another post op appointment, we went a little further. Cooking and dicing up chicken tenders, mandarin oranges broken into pieces, apples diced up into bite size pieces.
She was not allowed anything hard or sharp, such as chips or crackers. And nothing that required taking a bite with her front teeth, things such as sandwiches (although I did make a PB&J sandwich and cut into tiny pieces to eat in the back of her mouth), chicken wings, pizza, etc, etc.
Rachel was on a soft food/ easy to chew diet for 3 1/2 weeks.
One of the things I found helpful was using plastic spoons. One of the local frozen yogurt places has these great spoons that I save and use in the girls' lunches. They came in handy for Rachel's recovery. They have a very skinny end that allowed for successful dropping into Rachel's mouth the week following surgery. We did not want to take any chances of a metal spoon hitting that sensitive bone graft area, so we used the plastic spoon, and we fed her the first week post op.
Rachel was also not allowed straws or sports top bottles for 3 1/2 weeks following surgery. I found the best thing was to have paper cups sitting on the counter for her to use. A paper cup, if the upper gum or lip should be hit, would be less painful than a hard plastic or glass cup. When she returned to school, I sent a paper cup and a water bottle to sit on her teachers desk.
Feeding Rachel was been VERY difficult. Coming up with things for her to eat has been very stressful. She's become very picky since surgery and sadly has lost 2 1/2 lbs, which on a little girl, is very noticeable. For almost two weeks after Dr. Martin lifted all food restrictions, Rachel was very hesitant to eat. Getting her to eat was very difficult and very stressful as we did not want to see her loose any more weight. But once her fears subsided, and she even began chewing and taking bites with her front teeth, she's been an eating machine! And that's okay with us!
Physical Activity/Restrictions
Rachel was up and walking hours following surgery. It is said that the most painful part of having a bone graft is the pain that comes from the donor site, the place where the tissue was taken, and in Rachel's case, it was her left hip. From Day 1, she had no limp, no pain to complain of from her hip, nothing.
Once school resumed, two days shy of being two weeks post op, Rachel did not participate in PE, or recess. The chance that a ball hit her nose was too great, and would be extremely painful. So I packed her a back pack of new coloring books, new crayons, a tablet of paper, and some other fun things to do while she was 'benched'.
She resumed Tae Kwon Do class, two days shy of it being three weeks post op, and that might have been a little bit too soon, as she woke up the next morning complaining of her leg (specifically the leg where tissue was taken) hurt. It was probably too much jumping and kicking about.
When Rachel was just a few days shy of four weeks post op, she went back to playing at recess and is participating in some PE, she still sat out on the days that PE involved a ball. LOL.
We're thinking that once she returns to school next week, after our three week Christmas vacation, she can go back to playing without any limitations, at that point, she'll almost be eight weeks post op.
Pain Management
Rachel received morphine while in the recovery room for pain, but once in a room, and upon being discharged, she received Tylenol with Codeine. We were told that the only reason she was kept overnight in the hospital was due to the pain and the access of having better pain control as an inpatient.
There were two times in the night that I had the nurse page the on call doctor because it was evident that the pain medicine was not enough. Sadly, our pages were never returned and come morning, we discovered that Rachel had been severely under medicated through the night. When she should have been receiving 10ml of Tylenol with Codiene, she was only being given 2ml, the dosage appropriate for that of an infant. Once we got the proper amount of pain medicine in her system, things changed drastically for the better.
If you should suspect that the pain meds you're child might receive following a surgery might not be enough or doing it's job the way a pain drug should, be persistent about bugging the nurses to page the doctors on call, double checking they are paging the right doctors on call, even questioning the nurse that what she is administering is the proper dosage.
We were sent home with Tylenol with codeine, the proper dosage. And for the first three days, we gave it like clock work, every 4-6 hours as directed. For two nights, we even set our alarm in the night to get up and give her something in her tummy and give her a dosage of pain medication. It was important to break the pain cycle.
With Rachel, you could tell the pain meds began to wear off about 30-45 minutes before the next dosage was due. By Post Op Day 5, we were giving Rachel regular over the counter Tylenol. And by 1 week post op, she was pain free.
Bruising / Swelling
When I initially asked at our Pre Op appointment as to how much bruising we should expect with the nose job, I was told that because they were working with cartilage and not bone, there would be no bruising. That was not the case for Rachel.
Rachel's face began to swell the day after surgery. The worst of the swelling was at 3 days Post Op. And then from that day on, the swelling started to slowly decrease.
As for bruising, the bruising surfaced under her eye and her upper cheek bone on the side of her face where the majority of the work was done (her right side) on Day 4. It was a yellow bruising which usually is an indicator of deep tissue trauma. The bruising was gone within a week.
Nasal Stents
The morning following surgery, Rachel hated those nasal stents with a passion. She screamed, she hollered, she wanted them out! She continued to complain about them, but never once did she try to take them out.
Our plastic surgeon explained to me at the first post op appointment that Rachel's nose had a lot of scar tissue and scar tissue has a tendency to go back to it's original shape very easily. So he always prefers to leave nasal stents in place anywhere for one to three weeks post op. He also told us that it could take up to 6 months Post Op for the nose to settle down and become the new permanent look.
Rachel had nasal stents for twelve days. She was not self conscious about them. She went to church with them in, went out in public with them in, even went back to school for one day with them in.
Returning to School
This is one area that will be different for everyone. We scheduled Rachel's surgery for a time in which she was off track from school. She missed NO school due to surgery, or the time it took to recover afterwards. Rachel returned to school on the very first day back from vacation, which was 12 days post op.
However, if you're reading this post, and you have questions, perhaps something I didn't cover, please leave a comment, or sign Rachel's guest book and leave your email address and I will email back!
I would love to be able to answer questions or put aside any fears you might have if you're on the brink of having a bone graft done to your little one.
Wednesday, December 29, 2010
6 Weeks Post Op
Today marks 6 weeks since Rachel's surgery and I am so happy to report that things are TOTALLY back to normal! 
About a week and a half ago, Rachel finally started eating like her old self. For a while she was afraid of biting with her front teeth, due to the bone graft to her upper gum. And while she still shows a little favoritism at times to biting things when she can with her back teeth, she is back to eating!! And we are sooo happy about that.
Her eating was really the last concern we had. She really is totally back to normal and we're so very thankful for that!
About a week and a half ago, Rachel finally started eating like her old self. For a while she was afraid of biting with her front teeth, due to the bone graft to her upper gum. And while she still shows a little favoritism at times to biting things when she can with her back teeth, she is back to eating!! And we are sooo happy about that. Her eating was really the last concern we had. She really is totally back to normal and we're so very thankful for that!
Monday, December 27, 2010
A Pool Party...In December???
The week before Thanksgiving found our Pastor and his wife waking up in the middle of the night to a house flooded by an overflowing toilet. Their house has been packed up and put into storage, the drywall has been cut three feet up the walls, and the flooring all ripped out. And they've been living in a hotel for the last six weeks.
We now sometimes call the boys Zack and Cody and how they're all living the "Suite Life".
As tragic as it all is, living in a hotel for six weeks thus far, and really no end date in sight, does have some advantages!
Today was their youngest sons' birthday. He's Rachel's pal at church and at school. And this year, for his birthday party, they had a pool party because the pool was an indoor pool and was heated!! The kids had a blast!!!
After swimming Rachel wanted to see where Isaiah's been living and together we boarded the elevator and went to see his Suite. 
One things for sure, this birthday party will be a memory for years to come. Rachel and Hannah both had a blast swimming in an indoor pool...just two days after Christmas!
We now sometimes call the boys Zack and Cody and how they're all living the "Suite Life".
As tragic as it all is, living in a hotel for six weeks thus far, and really no end date in sight, does have some advantages!
Today was their youngest sons' birthday. He's Rachel's pal at church and at school. And this year, for his birthday party, they had a pool party because the pool was an indoor pool and was heated!! The kids had a blast!!!
After swimming Rachel wanted to see where Isaiah's been living and together we boarded the elevator and went to see his Suite. 
One things for sure, this birthday party will be a memory for years to come. Rachel and Hannah both had a blast swimming in an indoor pool...just two days after Christmas!
Beware of the Neighbor Kid
If you should happen to spot something resembling that of a periscope looking over your fence, beware of the neighbor kid, for she's spying on you!!
When we took the girls to Toys R Us a few weeks back to get some ideas for Christmas presents, Rachel spotted this Backyard Safari Periscope and she LOVED it! After that day, I looked for it a few places and couldn't find it.
But yesterday afternoon, as we were out doing some after Christmas shopping with gift cards and money we'd all received, we found one at Toys R Us!!! There was no hesitation in what Rachel was spending her money on!
Today, was a beautiful day and we spent some time outside putting up the girls' tetherball court and enjoying some sun and Rachel enjoyed her new toy!
When we took the girls to Toys R Us a few weeks back to get some ideas for Christmas presents, Rachel spotted this Backyard Safari Periscope and she LOVED it! After that day, I looked for it a few places and couldn't find it. But yesterday afternoon, as we were out doing some after Christmas shopping with gift cards and money we'd all received, we found one at Toys R Us!!! There was no hesitation in what Rachel was spending her money on!
Today, was a beautiful day and we spent some time outside putting up the girls' tetherball court and enjoying some sun and Rachel enjoyed her new toy!
Saturday, December 25, 2010
Rachel's Christmas in Pictures...
to do 'photobooth pictures'! It was hilarious!!!
Friday, December 24, 2010
Christmas Eve
This year, Rachel was in the Children's performance for our Christmas Eve service whereas she played two roles, a shepherd, and a wise man. The kids have been practicing following Sunday morning services for weeks and their practicing and the organization from the ladies who arranged it all, directed it, made costumes, props, etc did an amazing job and the performance was absolutely adorable!
Following our church service, we did something different this year for Christmas Eve, we went to my parents house along with my brother and sister-in-law, and our nieces, for dinner.Following dinner, it was time to get into more comfortable attire! I bought the four girls matching jammies and did they ever look cute!!! This might have to be a new tradition.
There were presents from their Great Grandma and Great Aunt and Uncle and cousins to open as well. And Papa and Gramma gave the girls their big combined present - a tetherball court!! My girls were beyond excited!
It was a relaxing evening, and not too late. The four girls had so much fun laughing and playing with their new things and just being silly. We headed for home around ten, it had been a full afternoon/evening that resulted in Rachel falling asleep on the ride home, which is only about five miles!
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