Ten Random things for Tuesday

1. Sophie got more metal in her mouth this week. She got an extender yesterday in addition to the braces that she got last week.

She is having A LOT of trouble talking and eating now. I also get to crank the extender every day. So every day I get to inflict pain on my poor daughter. I really need to remember to get some children's Tylenol at the store tomorrow.

2. Since we are on the teeth theme already the tooth fairy informed us she doesn't plan to visit anymore to collect teeth. Henry lost a tooth on Saturday and discovered that instead of her midnight visit she decided to just make a direct deposit into his "Bank of Papa" (which is where all his allowance and lawn mowing money goes). Sure enough he looked at his statement and there was his dollar from the tooth fairy.  Hopefully this will be an easier way for tooth fairy to handle the demands of her job. She is often so busy and takes days and days for her to get to my kids.

3. Molly played at her friend Julia's house again today. She loves going there. It is so nice to have a few free hours from Molly's noise and chaos. It is amazing how much school work we are able to get done when she isn't here to distract the students :)

4. My kids have been making up a Temple Run game outside and around our house. Evidently there are traps and obstacles that they have to race through. I guess this is a game that they have played on someone's ipod and they are creating a life size version in our house. They have been using all sorts of string, sticks, duct tape and balls to create it. I almost hate to call them in to finish their math or to take out the garbage. I love to hear them planning, construction and racing.

5. The weather has been so nice the last day or two. Cool, compared to the heat we had last week. I hope it continues a little longer. I like the spring like weather. I am not ready for Summer heat yet. This is another reason I am slow to call my kids in from their play. They won't be able to do as much outside when it is hot.

6. I mentioned already that I got the kids hymn books for Easter. We have been trying to learn a few different hymns but Molly insists on singing "Christ the Lord is Risen Today" every day. It is so cute to see her sing the Alleluia. Ian always picks "If you could Hie to Kolob".  Sophie is always picking obscure ones that I don't even know. Henry doesn't ever get to pick. He seems to always just let Molly have her choice. But at least he enjoys singing along even if he isn't always on key.

7. We've been able to eat Salmon two weeks in a row. We always eat Salmon for holidays and birthdays. It is too expensive for everyday eating. We have had two birthdays recently and my kids look forward to fish for dinner. I love to see my kids scarf down the Salmon so readily. I don't think I would have eaten it when I was their age.

8. I am often amazed at how my kids can keep all the different stories straight. We have several read aloud/ audio books all going at the same time. Anne of Green Gables in the car. Harry Potter in the house.  I read aloud all sorts of fairy tales and such each day. And my husband is currently reading the One and Only Ivan to the kids at night. This doesn't even count all the many different books they are reading to themselves when we aren't reading aloud or listening to stories.  I am just happy to think of all the many many books with which my kids are acquainted. They certainly have more stories in their lives than I remember ever reading as a kid.

9.  We either need to get more book cases or sift through our plethora of reading material. Our big bookcase is triple stacked on many of the shelves.  The kids shelves are all full too. I guess it is time to make a change somewhere.

10. My kids, Sophie especially, are Webkinz crazy!

They like to drag them all out and stage photo shoots.

How is that for 10 Random things!

Round Two Begins

We started to take Sophie into the Orthodontist when she was about 7 years old. She shortly got an extender that we had to crank each day to push her top jaw out to make it wider. She got braces shortly after and had them for almost 2 years as they prepared her mouth for the bone graft surgery she would need. She had a retainer for about 6 months while we waited for her surgery date. Once she had surgery the retainer no longer fit her mouth and the Maxillofacial surgeon didn't want anything to interfere with her bone graft. That was almost two years ago. 

Sophie hasn't had any orthodontics since that time because the Orthodontist has been waiting for her 12 year molars to come in. Lucky for us they came in before she turned 12.  A few weeks ago, at an appointment with her whole cranial facial team they (the Maxillofacial surgeon, plastic surgeon, and Orthodontist) decided it was time to start round two finally. Over the past two years her beautiful, straight (and expensive) teeth had reverted a bit to their original crocked state. 

Today she got braces again. This time she has brackets on the top and the bottom. 

She is going to have to have an extender put in next week to also help the process along. Wow! does that sound like a lot of metal in one little mouth. We are really hoping to correct her teeth and jaw with orthodontics rather than have to have jaw surgery again.

She has been very positive about the whole experience. She wants to see her teeth straightened. However, she certainly didn't like the spacers (little rubber band like things they placed between some of her teeth) which were placed last week. She took a bit of Tylenol to sleep at night and sampled a lot of popsicles to keep the pain at bay during the day.  I have a feeling I need to stock up on those two things while she goes through this process again. I can see this round is going to be a little more extensive than the first round.

Leaving the Doctors office in tears.

Today we had the 6 week visit with the surgeon who did Sophie's surgery. She had x-rays taken and everything is going great! He said there is all sorts of bone tissue up there and the bone is fusing and that her canine tooth is actually moving into place and may come through soon. Sophie has had such a large gap in her mouth on that side for years it seems. There is the hole for the tooth that she will never have because it is where the cleft actually is. The baby canine next to that hole fell out a few years ago but without bone for it to really grow into it never came through but thankfully it just was there just waiting and he said it was moving into the right position. So that is really good news. The surgery seems to be doing what it was meant to do. Sophie shouldn't need any more surgery until she is ready for her nose to be redone but that isn't done until she has finished growing. So of that we are all very happy.

After talking with the doctor for a little while we left. Sophie left with tears in her eyes. When I asked her why she was upset she explained that she was sad about still noting getting to EAT FOOD. The doctor said we should continue with the soft food diet for at least another month. We have been gravitating toward a more soft food rather than liquid diet the last week or two. Sophie eats peanut butter and jelly sandwiches, very tiny pieces of cut up meat, as well as a variety of other things I let her pop bite size pieces into her mouth and push to the back so that she only grinds it up with her back teeth. The tears were a result of her thinking he was saying she couldn't go out and get a burger. She is very tired of being limited in what she can eat. I asked her what food she was wanting and we would see what we could do. She couldn't really tell me anything. She eats pizza and all the fruits and even hot dogs at Costco. I just cut everything up in tiny bites like I did when she was a baby and just learning to eat solids. I don't blame her, it isn't a very ideal way of eating. But we are going to keep at the soft food diet for awhile.


I didn't leave the office in tears but if I had had tears it would have been tears of embarrassment or weariness or maybe tears of frustration. The doctor was very paitient with us but it is always a challenge when I have to take all the kids with me to the doctor's office. There is just something about the little dentist type chair in the room with all the buttons that control it's angle and height. The movable lights on the wall just scream out to be positioned over and over again as well as flipped on and off. The sink in the room calls out to Molly to wash her hand every two seconds. The drawers of tools and bandages and such have to opened and explored. I would have one sitting only to have the others up and getting into something. I think because Molly is two and into everything the boys seem to follow her lead and act like two year olds as well. They seem to forget how to behave when confined in the tiny rooms as a wait for doctors. As I walked out to the car I told the boys their behavior just cost them their Wii time on Saturday. So the tears leaving the doctor's office weren't mine but my boys who were hopefully regretting their behavior since it cost them the hour with Indiana Jones or Luke Skywalker.

I need to go make some pesto pasta with brocolli which is still Sophie's favorite meal that I make which she can eat. Now she doesn't even have to have ground up in the blender.

 

The pictures are from a swimming party we went to this past week. Molly was unstoppable. She went down the slide and jumped off the board. Thank goodness for the float she was wearing. She has no fear of swimming and going under the water. She just needs to learn how to swim. Everyone had a great time!

Returning to Normal

We function so much better when we are on our usual schedule. Holidays and sickness have thrown us off but today we really tried to go back to normal. We do school even during the summer because we need the set rhythm to our days. We are all happier and know what is expected of us when we follow our routine.

The past week was hard on us and it was nice to return to our everyday and normal life today.

We started a new read aloud this afternoon. I picked up Dinotopia from library last week and started reading it aloud to the boys (Sophie grabbed it off the shelf and has now read it already).  I also picked up a bunch of other Dinosaur books while I was there.

We aren't officially doing a dinosaur study but I just thought it would be fun. We study what we want, whenever we want.  This week we are going to be reading a lot about dinosaurs. We will see if there is any further interest in the subject. At the moment they love it. We read half of Dinotopia today as well as a number of the other books. They boys wanted me to keep on reading but I was starting to fall asleep. These warm temperatures make afternoon reads harder than ever. I have a feeling we will finish the book tomorrow and need to pick up another one in the Dinotopia series when we head to the library on Thursday.

Sophie too is returning to her normal self. She is totally off her pain killers. On Sunday she started to get sick from the Codeine so I stopped giving it to her. She had a few doses of regular Tylenol after that but hasn't had anything the last day or two. She is walking more and more normal but does get tired after a long walk.

She finally let me take the big bandage off her hip. I think she thought she needed the padding to protect it. All she has left is the tape on her hip. Her mouth doesn't bother her. She complains about some of the glue coming off but not about pain. The bruise on her face is turning a bit yellow on the edges so I know it healing. The swelling is almost completely gone. It is nice to see her smile and not look medicated.  She felt so good this evening she was outside enjoying a scooter ride standing with all her weight on that left hip too.

I love having a boring, uneventful, simple life!
Normal is good.

Liquid Diet

We are now only 3 days post op and we are already tired of the liquid diet. Sophie is feeling a bit left out when I make toast or stir fry some veggies. She normally wouldn't have been interested in the veggies but I think because it smells good she wants them.  She is craving things that aren't sweet. She is tired of juice, bananas, yogurt and milk. I think I am going to have to start experimenting with soups just so she can have a few other flavors.

I have tried to give her a variety of things to eat. We had burritos for lunch yesterday and I made some refried bean, guacamole, tomato mush for her which she ate but I know it wasn't the same as getting to have the real thing. Eating in front of her is awful. She looks longingly at the food but knows she can't have it.

Yesterday we went to a baptism (I know it seems early to take her places but she wanted to go and is bored at home) and I brought along a little yogurt drink for Sophie to have because there are always treats afterward. She was a little bothered by the cupcakes because she really wanted one but soon figured out how to squeeze the cream out of the cream puffs and into her mouth and had about 10 of those. She had a plate full of left over cream puff shells but she was happy to have gotten something yummy. 

Today I made her a regular old green smoothie. Lots of spinach mixed with some fruit and she drank it down without complaint. I should be happy with what she is able to get down. It could be a lot worse.

From the pictures above you can see that she is still swollen and a purple bruise is showing through on her cheek.  I still can't believe how well she is doing. Her pain doesn't seem too bad. We are only giving her a half dose of her Tylenol with Codine a few times a day. She doesn't ask for it but I can just tell she could use it.  So far so good.

Maxillofacial Surgery - Bone Graft

A Little History

Long, long ago on the day Sophie was born (almost 10 years ago) a plastic surgeon came and talked to us about what would be done medically to help Sophie repair her lip, palate and nose. It sounded like surgery after surgery but it sort of sounded far off in the future so we didn't worry about it. We were focused more on keeping her fed and changed and happy.

Sophie had her first surgery when she was 2 months old. They tried Adhesion surgery to pull the lip together to prepare for the actual lip repair. Since the cleft was so large however she broke the adhesion and we ended up having to tape her lip for a few weeks so the skin of her lip would be prepared for the Lip repair.

This lip repair was pretty much only cosmetic. The palate was still wide open so liquids and such still went right up into her nose. The palate surgery was done when she was about 1 year old. I guess because it is a much more extensive surgery they wait until the baby is a few more pounds before that one. During this surgery the ENT also put in ear tubes which is a very common need of children with clefts.

We have needed ear tubes replaced twice since the palate was done but these surgeries are very short and she goes home pain free in just an hour or so.

Over the years we have had a team of doctors that we see on a somewhat regular basis. They make sure she is hearing well, speaking clearly, and developing normally. Hearing well has been our only issue so far. This is why the ear tubes have had to be replaced a few times. We are lucky that there hasn't been any need for speech therapy. Sophie has been a talker from a very early age and it is amazing that she is able to speak so clearly.

At about 7 years of age they decided it was time to start visiting an Orthodontist to help push the jaw out a bit and prepare her mouth for the next surgery. She started off with an extender and then braces and she has enjoyed the few months she has only had a retainer while she waited for her surgery.

The Surgery

This is the first of all these surgeries that Sophie has really been aware of what was going to happen. She has sat through all the doctor visits as the surgeon explained the procedure and why it was necessary. She is old enough to understand what it all means. She was very nervous and I don't blame her. It sounded very extensive and painful.

What scared her the most however was the fact that they were going to put the IV in while she was still in pre-op.  She heard that and suddenly was visibly shaking. She couldn't focus on anything but the IV and the nurse who was supposed to do it. After one failed try, the nurse decided to give her a calming medicine and leave it up to the Anesthesiologist once they were in the operating room.

The calming medicine made her very foggy and she didn't even realize the surgeon had come in and marked her face and hip so they wouldn't make a mistake on the side they were working on.

She was just happy they let her take her cat, Crookshanks, with her. They even gave the cat a little blue hat just like her. I am glad they gave her the calming medicine she was really nervous and it helped her relax and pass the waiting time in pre-op much easier than it could have had.

Almost 5 hours later we were brought into the recovery room to see her. She was a bit shell shocked and was very groggy but very talkative all the same. She loved it that Crookshanks also had a bandage on her hip just like hers. This cat was her best friend through the entire experience. It didn't leave her side from the moment we walked into the hospital. 

Once they were sure she was fully awake and that she was breathing well and temperature was back to normal. I guess they keep patients very warm in the OR. The OR is actually kept very cool for the doctors but patients do better when they are kept warm.  She was sweating profusely and needed time to cool down a bit.

We spent the rest of the night in our own room in the pediatric ward of the hospital. I brought along the DVD of Harry Potter and the Goblet of Fire. Sophie has read the book but the boys haven't so she hadn't been able to watch the movie yet. So this was her opportunity. We only made it through about half that night before tiredness and drugs kicked in and she requested it be turned off and we head to sleep.

I really hate hospital stays. Nurses were in and out all night checking this and that or giving more medicine. And because Sophie was on an IV she was very well hydrated and therefore needed frequent trips to the bathroom. For a girl who has just had a bit of her hip bone removed this isn't easy to do.  So we were up often throughout the night walking her back and forth to the bathroom. But the walking is good for her. It is needed to aid in the healing process.

Sophie must have a high pain threshold. She did request pain killers but kept to the Tylenol with Codine rather than the morphine. She was determined to go home and did what she needed to do in order to get there. 

She gets to spend the next week or so working with a sore hip and the next two months she is to keep to an all liquid diet. She can't chew anything. They don't want her to use her new jaw at all. So we are going to have to find ways to feed her more than just milk and juice. In the hospital she was able to eat some jello, yogurt and very soft ice cream. Two months on liquids will be interesting. Thank goodness we have our new super blender so we can make lots of green smoothies.

I tried to get a picture of the actual work done but it is hard to look inside. She isn't supposed to stretch that top lip too much or else it will disturb the sutures. It is also hard to tell what is the graft and what is the glue the surgeon said was used to make sure the sutures stay in place.

This girl is doing amazingly well. She went home within 24 hours and is walking around all by herself. Very slowly and with a very pronounced limp at the moment but she is trying so hard to be independent. I think we have to work at slowing her down and making her rest more.

She is such a brave, strong girl! I am really grateful for doctors and what they are capable of doing!

A Funny Nose

A week or two ago Sophie made a "Journal Jar" at her weekly church group/activity. This jar is filled with topics to write about in your journal that day. Evidently the lesson on keeping a journal struck a chord and Sophie has been writing in it. I wouldn't say everyday but often, and totally on her own. The other day she brought me her journal so I could read her entries.  Most of the entries were about her favorite things and some of the typical events of the day. One of the topics, obviously from the jar, was about things she didn't like. She listed a few things like oatmeal and scrabbled eggs but then she added she doesn't like her funny nose. That is all she said. She didn't elaborate any farther.

I know she doesn't like that she is different than others. She is at an age where those things become more and more important. And I have heard her say many times that she wishes she hadn't been born with a cleft. When we were expecting Molly she was very worried that Molly would have a cleft too. I don't know if it would have made her feel better that her sister also had a cleft. She just feels a bit singled out I think. She is the one for whom we often have to go to doctors appointments. She is the one who has to have braces and ear tubes. A lot of these feelings are especially pressing right now because her braces are coming off next month and that means she is ready for surgery.

We met with the cranial facial doctor a few weeks ago to talk about this next surgery. This is the big one. The one where they take a bone graft from her hip and insert it into the space in her upper jaw. And if that doesn't sound bad enough, the doctor explained that they pretty much have to do a nose and lip reconstruction to do that. Since Sophie was right there in the room with us, while we were talking to the doctor, she knows exactly what is ahead. She is scared, and rightly so. It doesn't sound fun.

Today at our homeschool co-op there was a mom there with her newly adopted little girl. The baby has a cleft and is just starting the whole process. She is having her lip surgery next month and the mom was asking me questions. I know it was always nice to talk to other moms who had been through this too. It brought back a lot of memories to see her pull out the squeeze bottle to feed the baby. In fact it was the bottle that clued me into the babies cleft in the first place.

I was also sent a link to a blog where a mom who has recently given birth to a baby with a cleft and had just had her first surgery.  She has taken so many pictures of her little girl. I was a bit jealous that she has so many. When Sophie was small we were still using our regular film camera. We got our digital camera when she was almost two years old. I remember taking picture after picture of her trying to capture the smile. The night before her lip surgery I took a bunch more but since I couldn't see the shots until I had them developed, I never knew if I actually got them.

Digital cameras are such a blessing! I not only can check to make sure I captured what I wanted to capture but I can take as many pictures as I want and print only the ones I really like or as I need them. I wish that had been available back then. Digital was still new and so expensive not that long ago.

Here is Sophie with her face all swollen after her lip surgery when she was 3 months old.

She hated the "No-No"s but what person would. Doesn't that face just look traumatized!

Here you can see her black eye and stiches just a few days after lip surgery.

This was the day she got her stitches out.

This was taken on her first birthday. It was about 2 weeks after her palate surgery. It is amazing how quickly they bounce back.

This was taken when she was 5. Sophie was hamming it up for the camera but the close up really shows what a great job her plastic surgeon did. There is a scar and a funny little dip to her nose but when you see the before picture and compare, it is amazing!

I was a little sad to read that one line from Sophie's journal. She knows she looks a little different. I just don't want her to feel like her "funny nose" is some sort of punishment, or that she needs to feel ugly as a result. I have a feeling the coming years may be difficult as she goes through these preteen and teenage years.

Not Covered

Today we have officially started Sophie's Orthodontics. This was something we knew we would be dealing with the day she was born. And earlier this year our Cranial Facial Doctor told us that Sophie had finally lost enough teeth and was at an age to move ahead with the next surgery. But before the surgery could be performed she would need the orthodontics to move her teeth to make room for the bone graft that would be put in her gums. I know it sounds horrible and I cringe to think about what this means for my little girl. The idea of her having to go through this surgery and especially the bone grafting just makes me.... I don't know a bit scared for her and worried about the pain that it will cause.

We saw the orthodontist who is experienced with cleft pallet corrections for a consult a few months ago. Sophie had some very extensive x-rays taken of her teeth, jaws and whole head about a month ago. But today the real work began. Sophie had to go in and get spacers put in to prepare her teeth for the "appliance" as the Orthodontist called it. She also made molds of her teeth so they can make the extender to fit her mouth. We get to go in again next week for more spacers and such and then finally in two weeks she will have the extender put in place.

What is killing me is that this orthodontics procedure is necessary before her surgery (which is fully covered by our Health coverage) but health insurance doesn't cover the orthodontics. And dental doesn't cover the orthodontics either because it isn't really braces, it is a special procedure. So we end up picking up the entire bill for this one. And we have already been told this is only phase 1 of 3. It was somewhat breath taking to see what the estimate was for only this phase. I signed that contract and gave them the down payment but it is daunting to think how expensive this is going to be. I should be more grateful for the Health coverage we have which so far has completely covered all her surgeries (four so far) and doctor visits (which have been too many to count). We are really blessed to have the plan that we do. Thank goodness my husband has a stable job that provides this coverage with little out of our pocket.

It has never even been a question that we would do these orthodontics for Sophie. We were warned the first time we even saw the plastic surgeon, when Soph was only 1 month old, that the orthodontics wouldn't be covered. It is something we have always known was in the future. It has just always been something "in the future" and now we find it on us now. She will have a beautiful smile at the end of these years of extenders, braces and a few surgeries. That will be worth every penny!

For now she is already complaining about the pain the spacers are causing but is being so good about everything. The orthodontist's assistant said she was very cooperative and nice today.

Sophie is a trooper.