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!

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...

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???

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...

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...
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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.

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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.

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!

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!

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!

Saturday, December 25, 2010

Rachel's Christmas in Pictures...

From now on we shall call Rachel - Ramona!
This girl can make some of the silliest faces!!
My Uncle bought the girls each one of these!!!
How about a picture of the new nose she got this holiday season?!? LOL
Getting some love from Papa.
My sister in law had this wall background with props
to do 'photobooth pictures'! It was hilarious!!!
It was a great day of hanging out and playing with the cousins!

Friday, December 24, 2010

Christmas Eve

Merry Christmas from our House to Yours!
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!

Thursday, December 23, 2010

Eye Exam

For the last few weeks, we've wondered if Rachel might need her eyes checked. We weren't sure if it was her having trouble seeing, or just the adjustments of still learning to read.

This morning, Rachel, Hannah, and Steven, all got their eyes checked. I went last April, so it was everyone else's turn, and for the girls', it was their first time to have their eyes checked outside of the simple screenings they do at school and at their Pediatrician's office.Rachel cooperated very well for the exam, and turns out she's a little far sighted. And to make a long conversation with the doctor short, Rachel will be given a very mild prescription for glasses to wear during her homework and reading here at home, and if she says she can see better when reading, then perhaps she'll then take the glasses to school for reading there as well.

She was pretty excited about getting glasses. And she sure looked cute trying on the different frames. It didn't take long and we settled on a frame and then the technician went to work on measuring and mapping out where her pupils land with the glasses on, etc. And here is how Rachel will look in her new glasses once they've been fitted with her prescription.Good thing we got her nose fixed last month! She's always had trouble keeping sunglasses on her face because of the shape of her nose, and now the glasses will fit just perfectly!

Sunday, December 19, 2010

Rachel's New Nose

I took this picture on Friday morning when Rachel's class was doing a book exchange. She was having so much fun and I just love the expression and smile I captured in this picture. In the last month, we've seen Rachel's nose change drastically. It really is an entirely different nose than what it was.

There are times when I just sit and stare at her little face. A lot of people now say she looks so much like Hannah with the new nose, which is absolutely amazing to me that people see that, and yet it was the work of a plastic surgeon that made her nose to look that way.

There are times when I think her nose is big, shaped a little funny, too this or too that, and then you know what, I look around at all the kids in her class, at the school, in Sunday School, even her little cousins, and they all have some silliness to their nose in some way. LOL. It's just how people's noses are and I'm simply not used to seeing such a 'normal' nose on my girl.

And just like the days and weeks following her lip repair, when you go through a time of missing that 'wide smile' that once was the center of your babe's face, you go through it again after a nose job when the nose has changed so drastically. There are at times I miss her little squishy, lopsided, and flat nose...

Friday, December 17, 2010

Christmas Performance

The entire first grade put on a Christmas program this week titled "December Celebrations". The songs and poems showcased the different ways that cultures and countries celebrate in the month of December.

Rachel's class sang "Feliz Navidad" and the girls were dressed cute in bright colored skirts and used maracas in their song.On Wednesday, all 100 first graders walked next door to the Senior Center/Apartments and performed in the recreational room for seniors who came to watch. They did a great job and had a warm response from all those who came to watch.This afternoon, they did the performance for all the parents. Again, the five classes did a great job, and it appeared that our class' song was a huge hit and got the best and most response not only from the audience, but the other classes started moving about and doing the hand motions as well. LOL. It was a great performance, and as always, I enjoy seeing my girls, and the other kids perform.

Monday, December 13, 2010

Almost 4 Weeks - Post Op Appointment

This afternoon was Rachel's 3rd Post Op appointment, Wednesday will be 4 weeks since surgery.

It's always a long shot to guess how long we'll have to wait to see Dr. Martin. At our appointment 2 weeks ago, we sat in the waiting room for less than twenty minutes, in a room, seen, and walking back out to the car within forty five minutes, record time. The time before that over an hour just in the waiting room. Needless to say, we always go prepared. Today, the three of us would have made a perfect picture for an Apple ad - each of us on a different Apple product to pass the time. LOL. After being placed in a room, I asked the nurse if I could weigh Rachel as her weight has been a little bit of a concern. And sure enough, she's down another pound since two weeks ago. She weighed 50 1/2 lbs today, 53 lbs at her pre-op. Her limited diet and her lack of an appetite is taking a toll on her little body. Dr. Martin said everything is healing up very nicely and looks great. Said the tissue in her nose will start to soften over the months. I asked him about the discoloration of her nose last week (that is now peeling) and sure enough, the reason was just as I had suspected. Because her nose swelled so much following surgery, stretching that skin, it was now dying thus changing colors and peeling. A little facial moisturizer will do the trick.

As for the inside, the bone graft and palate are healing nicely. And the best news is that Rachel can resume a normal diet!!! Whoo Hoo! She is free to bite with her front teeth, brush her teeth at the bone graft area, and can go back to using straws and her sport top water bottle! He said to ease into foods the next few days, but that by the weekend he didn't have a problem with her eating chips and crackers, etc. Things a little more sharp, etc. This was wonderful news and upon leaving Dr. Martin's office, and after picking up Hannah from Gramma's, we went to In and Out Burger to celebrate!!! Rachel ate an entire hamburger! I think this was the first meat (other than lunch meat and hot dogs) that she's eaten since before surgery.As we were waiting for our next post op appointment to be made, Dr. Martin came to the desk and told us that they were comparing todays picture to those that were taken the days before surgery and what a difference there was!

Our next appointment is for January 10th. Dr. Martin wants to see us back after all the sutures have dissolved, etc. At that time, she'll be about 8 weeks post op!

Home Sick

Rachel managed to not miss any school as a result of her surgery, but unfortunately, she's home sick today. The sad thing is that she had perfect attendance up until today.

She woke up early Sunday morning complaining that her arms and legs hurt, to the point she was in tears they hurt so badly. Her little body was burning up, but she had no fever. Her and I stayed home from church as a result.

But after a short stent sitting the bath tub, she felt tons better and we managed to make it to church for her to participate in the dress rehearsal of the children's Christmas performance that will be presented on Christmas Eve. There was no sign of her being sick, so she went ahead and went to Gramma and Papa's house for an afternoon of cookie decorating with the cousins. As the afternoon went on, she went downhill.

This morning, she couldn't handle eating breakfast without a meltdown, a sure sign of her not feeling well, so we told her she'd be staying home school, that made her terribly upset as she really wanted to go to school. When I returned home from taking Hannah to school, she was back in bed, with her TV on, sleeping. She's not eating much, and really hasn't been much since surgery. And when she does eat, admittedly so, her diet has not been a well balanced one. It's hard to come up with foods that are soft or can be eaten in the back of the mouth without taking a bite with your front teeth (ie sandwiches, crackers and peanut butter, cheese, etc). We have a post op appointment this afternoon and we're hoping that she'll be released as far as her diet limitations are concerned.

But as for her not feeling well, we're not sure what it is. A virus perhaps??