Recent Doctor's Visits for Cody

On Monday...Cody and I headed to Syracuse to get 2 appointments out of the way.  At our Ortho visit, they moved the wire a little and that was that.  These visits have become quick like that as we are waiting for some adult teeth to come in before we can really start to do much work.  So for now we are maintaining the progress we have made.  The good thing about that is the visit is quick and not that painful for Cody and our time inbetween visits have gotten longer.  We talked about his front teeth.  There is nothing left to these teeth.  They have been worn down as far as they can without disappearing (key word).  Dr. D said we will most likely have to pull these as there is just nothing to grab onto to wiggle them loose.  We left though with a "don't need to see you till March unless something happens".  Awesome!  March...we get the winter off!  Yippee!!!

This is the "progress" we have made!

So after we left Dr. D....we headed down the road for our 6 month check up with Dr. Tatum.  He noticed that his scars were a little pink and asked about that but I told him those only get really pink when Cody has a cold.  He checked out his ears and the right ear we need to keep our eye on.  He couldn't see the tube, saw some fluid and when he did the tympanogram he wasn't liking what he saw.  So he said to watch for ear infections and if we happen to notice the volume of the TV going up.  The tubes may need to be replaced.  After all, these tubes he has had in since he was 2.  Pretty good tubes if you ask me.  So we will watch it.  Hopefully we will get by till summer when we have our team visit again. 

Fast forward to Tuesday night....Cody says to me "Mom, am I supposed to have a tooth here?".  I turn the light on...."um yah you should".  Where did it go?  That has become the million dollar question.  Where is the tooth!  I could rub my finger on the tooth and feel something.  So I took pictures like Dr. D. told me to do and sent them to him. 

This is his mouth now.  See where the wire stops by the teeth - that tooth is gone.  Look at the picture above and the tooth is there.  So I play some email tag with Dr. D.  He was thinking the tooth fell out - I said no.  So instead of driving for an hour we headed to ur local dentist.  It also gave me a piece of mind that I wasn't crazy.  This tooth just didn't fall out.  She took x-rays and sure enough, there is the tooth - IN HIS GUM!  So I emailed Dr. D back this picture:

You see two rows of teeth.  The top teeth are his adult teeth.  The bottom are the baby.  You can see the wire and above that is the tooth in question... "the missing tooth".  So today I talked with Dr. D again.  (Thank god for cameras)  He said that basically as an adult tooth is coming it, it eats away at the root of the baby tooth.  Once the root is gone the baby tooth falls out.  Because Cody's tooth was not a normal shape and did not hang below the gum like a normal tooth it didn't just fall out.  So now we wait for Mother Nature to take it's course and for that big adult tooth above it to move on down and continue to eat away at that baby tooth.  He said that we will probably never have a tooth 'fall out" so now the tooth fairy has to get creative in what we do to honor this tooth.  We will watch the area for any redness or if the wire bother's him.  If nothing we will still go back in March. 

I'm praying for March! 

Oh and if you wanna know the secret to taking that picture of the x-ray......hold it very close to the light bulb and turn off your flash and Presto.....a picture! 

Team Visit

Our morning started early.  Off we went to Syracuse for 2 doctor's appointments.  Nice to get them all done in one trip though.  Today was Cody's yearly team evaluation.  We get to see a slew of doctors and with any luck, walk away with good news.  We got just that!  He did awesome - as always!  He's my big kid and knows he has to go with the flow of things.  First up for the day was dental x-rays and molds.  He did the x-rays and all is well.  We got in the room to do the molds and I told her he had a palate expander in his mouth.  She continued.  I could of told her it wasn't going to work - but hey, I'm not the hygenist.  She mixes it up and in it goes on top.  As he is gagging and hating it but keeping his cool, she pulls it out and YEP, it didn't take.  All of that goop is all stuck to his expander.  We are trying to get it out, not pretty!  Come to find out after our visit with Dr. Dillingham, he had told them to do the x-rays and molds but he said he didn't think he had to tell them to put WAX on the expander so the stuff wouldn't stick to it.  I really am still ticked about that.  Then she did the bottom teeth.  I joked that maybe his loose tooth would fall out.  Sure enough - the mold came out with the tooth in it.  Glad the tooth is out...he likes to hang onto them for dear life.  Dr. Tatum was next although we didn't get to see him.  He got called into a meeting.  The guy that filled in for him was OK however, I didn't get the warm and fuzzy when he didn't even know who Dr. Dillingham was.  Thankfully I really didn't have any major concerns.  Cody has been dorment for surgery for a few years now.  I just know that will change.  It's not "if"...it's "when".  They are thinking bone graft at 8 and jaw surgery at 15-16....of course these are estimates and who knows maybe we will dodge the bullet a 100% and not need either.  Hard to say but not likely that will happen.  Hearing is perfect, met with gentics - nothing new from them, got his pictures taken.  I realized that my kids can't have a camera in front of them and NOT smile!  :)  OOps!  Met with Speech.  Eileen is very happy with him.  He's having a hard time with the /s/ sound still and the /f/ and /v/ sound.  These have a lot to do with placement of tonge and teeth and jaw and all of those go against Cody right now.  So we will practice. 

We had a few hours to kill until we met with Dr. Dillingham so we ate lunch and hit up Target.  Target is where I realized why I DO NOT shop with my husband.  OMG!  He was looking for a backup pair of swim shorts and it took forever.  And he thinks I'm bad to shop with. 

Dr. Dillingham's visit went good.  He moved the wire and bonded it to help push out the front teeth so they stop wearing on the bottom teeth.  Now that Cody has lost the bottom front 2...we can't have his upper teeth wearing on the bottom and causing damage.  He filed down a front baby tooth that is basically dead.  We are waiting on the upper 6 year molars to come in.   He's getting his bottom two now.  When the uppers come in - we will switch out expanders and he will start to wear the head gear.  Time line for that is in about 9-12 months.  Until then, we maintain what we have.  We did find that a piece of the expander wire has broke.  We both think it happened at the dental clinic with the mold disaster.  UGH!  So he repaired what he could and we'll have to watch it.  We don't see him till October! 

I got an awesome shot of the inside of Cody's mouth today...but have to wait to post the picture as I just packed my camera cord. 

Cody's Endo visit

Today was Cody's endo visit...our last one was in September.  He had been doing really good and for a while I just thought this would be a routine visit.  For the most part, it was but I had a couple issues to discuss with the doctor. Cody gets to the point and it's 8 o'clock and the kid needs to sleep.  Which is fine but he seriously lately has been loosing his mind if he can't get to sleep.  So I thought it was odd and night time has become a real chore with him.  Crying, upset, can't sleep - I had no idea what to think or what was going on.  A friend told me that his thyroid could be off.  So today I told Dr. Wu about all the recent over tiredness and explained that not much has changed. If anything, his daily activity has gotten lighter with school being out. You can be more relaxed at home. Dr. Wu said that would explain his blood work. His TSH level is high. Last September it was 2.54 and today it was 5.5. He said that we need to increase his daily dose of medicine but because the range is high at 5.0 and Cody is just over that he is only increasing us a ½ a pill every other day. So every other day he will take 1 and ½ pills and 1 pill on the other day. Probably going to get confusing. He said that before the dose increase he was looking to take us off the med to see if his body had re-adjusted but because of the dose increase we are looking at another 1 to 2 years and then who knows. If we have to increase again then we are probably looking at something more long term. He wants to re-test the blood in 4 weeks and then he’ll let me know. He said he doesn’t need to see me unless those numbers come back really high or higher than we are at today. Right now we go back in Feb.

He said he is growing fine though. He weighed 60lbs and is in the 50th percentile for weight and height. So thankfully this thyroid issue is not affecting his growth. Which is good.

I explained it to Cody – I forget how big of a kid he really is when he has to be. I told him he has to have his blood taken again and he was OK with it. He had a good experience the other day when Brett took him. Matter of fact he just keeps reminding me that I promised him silly bands and haven’t gotten them yet. Although, he said he would take any “toy”, like a Bakugan! :)   I just told him he was so tired and the pills help him not be as tired. And his body needs more of the pills so he won't be so tired. He said “I understand mom, I still love being me”. Yah, I could of cried! 
So I knew something was up with my Cody. He has never had such a hard time falling asleep before. He’s been pretty attached at my hip lately too. And I have no idea why I let others make me feel like I don't know what I'm talking about or doing with him.  I DO know him, I know him like the back of my hand.  I've got this!  We are a great team and even though Brett is there and has been very involved and great with Cody - Brett has always said he trust me 100% when it comes to things with Cody.  So darn it, no more of that.  If I feel like something is wrong - it is going to take a Doctor or more to prove to me that I am wrong! 

Falling in love with a new smile, a new face

But I just can not forget the face that we welcomed into the world. This sweet face. Ok, who am I kidding.....there were days that didn't want to look past his eyes. I didn't want to see his lip that way. And yes...I'm ashamed to even type that but it's how I felt at times...not all the time, just sometimes. That first surgery (6 years ago today) is a memory like the day they were born. A memory that I will never forget. So far there has only been two of those moments. The lip and palate surgery....I remember the other 2 but not as vividly. I remember it took 5 hours. I remember the doctor coming to talk with us and telling us that surgery went well and that one of us could go see him. I hated that both Brett and I couldn't go. But we both knew I was the one going. I followed the nurse and rounded the corner and heard him crying. I had NO IDEA what he was going to look like....this was not what I was prepared for!So much bruising and blood. That sweet little face. I wanted the cleft back....He just looked like he was in so much pain. We got up to his room and he was hungry. So Brett prepared the formula and I held him. He would fill a syringe up and I would slowly push it into his mouth. He ate like a champ. Night time was rough. He wanted no part of his crib. So I held him in my arms and we slept. The nurse didn't like it but I really didn't care. We left the next morning to come home. With this surgery also brought us the first time we were away from Dylan. I hated leaving him behind.
We got home and everybody was so anxious to see him. Recovery got better every day. A few days later the steri strip came off and you could really see that new little face. I loved it. I couldn't help but kiss it. He now had 1 whole lip......

Over the years his face has changed and his scars have evened out. Most people look at him and don't even see the scars. I look past them now but at times I still see that wide smile of his. I will never forget where we started on this journey......

Ortho Update - Gum highlight

Cody had another orthodontic visit today and I am so happy that there weren't a lot of tears. A few tears this morning when he woke up but once we got in the car and he was settled in with his DVD and breakfast - he was good to go. We had a morning appointment so Brett could come with us and I am thinking that made a world of difference. I know it did to me...I felt like I had my rock with me and we could share that quick glance during the appointment and know exactly what the other one was thinking.

We did our normal first - put the cheek guards in and took our pictures....

To most of you it looks about the same....his front two teeth are loose. Not really wiggly loose but he told him to wiggle 'em and loosen them up. While looking at the picture above, on the left hand side you can see a bulge in his upper gum...that was where (as a baby) his gum was split in two. Well the dentist said that in that spot is now an adult tooth. Which is really a good thing...where there is a tooth there is bone and that's what we need.

Dr. Dillingham came over and took a look inside and noticed that the wire needed repaired. The spot where it was sottered together had worn down and he needed to fix it. So it had to come out. He popped it out and I could tell Cody was moving his tongue all around in his mouth. It must of felt weird. Then he looks at me and said "Mom, my appliance is out....(pause).....(eyes got really big).....CAN I HAVE GUM"........................OMG...yes, of course! So I called the assistant over and asked and she said sure. Thankfully I had gum in my purse. I gave him a piece and he chewed away. He loved it. The dentist thought it was wonderful. I explained to them how he has been so good and understand at what he can and can't have. How at times he has a meltdown and just wants to eat sticky food. So chewing gum is a big deal. I got out my camera to capture him chewing and the dentist wanted a picture too. He suggested holding up the gum pack. Here is my SUPER HAPPY boy chewing his G.U.M......

Those 10 minutes went by quick. He spit the gum out and back in the appliance went. He did great getting it back in, no tears! He was so proud of himself too as he reminded his Dad later that he didn't cry. Dr. D is very happy with his brushing habits (yep, patting myself on the back), and the great thing is we don't have to go back for 8 weeks...which just so happens to be my birthday! :) Thinking that trip if it's nice will be a Zoo day!!!

....bully...update!

Thanks to all of those that read and commented on my previous blog post. (I don't mean for all of my blog writings to come over to facebook but somehow I turned that feature on and can't figure out how to turn it off). However, since it does it also has allowed me to get great feed back from other's that have walked these shoes. And if you don't know me....that means a lot to me.

Anyway, I talked to Cody's teacher this morning when I dropped them off at school. She agreed with me and my request but said that her hands were some what tied as the student who did it was not in her class. Last night as I was going through Cody's bag I found that he had a nurses note so I felt that if the teachers knew, the nurse knew...the principal should know. Punching is a pretty big deal. He (the principal) agreed with me! He was not happy. He was concerned as to where the 4 aids were that are outside with the Kindergartners. He asked for the story and who the child was. I shared what I knew and he promised me he would get to the bottom of it. He felt that a good punishment would be to take away recess time. I agreed. It happened on the playground - so take the playground away. That is what happened. I am hoping the parents were notified and I really hope that the little boy understands that you can't punch somebody else.

Cody seems fine today. He didn't give me a fuss about going to school this morning. I honestly think that Dylan is more ticked off about it. As I was putting Dylan to bed tonight, he told me that he asked "boy J" why he punched his brother and the kid didn't answer. :) Dylan is a very big protector of his brothers. He might want to smack them around but don't let anybody else. :) That my friends, it just what it means to be brother's!

Kindergarten Bullying......."really?!?!"

I probably shouldn't write/act/talk about it as it all happened today and I'm pretty upset by it all. Who knows...maybe over reacting a little. However, it's my child and if I didn't, what type of parent would that make me. Honestly, I think my little boys are lucky that I have their back! :)

The morning started out good. Although I am still trying to catch up on that hour of sleep that seems to be kicking my butt every morning but whatever.... We were running 10 minutes behind. The boys were eating quickly and as they started to get dressed, Cody tells my mom and I that his head hurts. OK. So I gave him some tylenol and out the door we went. Got to school, dropped them off and he just looked a little out of it when he got out of the car. So, I got to work and decided to email his teacher to let her know. The day went on and I didn't hear from her or the school so I assumed the headache was gone and he had a fine day. It wasn't long before I was due to leave and go for my daily drive to pick them all up from school that the teacher wrote me back. Said he was fine all day .... but..... there was an incident on the playground today. As I read what was next my blood started to boil. Cody was on the playground and a boy "showed him his fist and then punched him in the stomach". Wow! Are you kidding me!

I left work to go pick them up and called my sister. I was angry but of course did not know the story. She suggested that maybe I don't speak of it first and see if they tell me. Good idea. I did just that. They got about 2 steps out of the school and Dylan spills it. So I talked to them a bit. Cody was on the playground playing with 2 friends "G" and "A". Girl "A" is not in his class. Then next comes over two boys. (one of them a few weeks ago pushed Cody).....the other boy "J" showed Cody his fist and then punched him in the stomach. All because Cody was playing with Girl "A". The teacher told me "J" apologized but Cody says not. Maybe the kid just apologized to the teacher/Cody - who knows and honestly I don't care!

I haven't spoken with his teacher but wrote her back. I will see her tomorrow at school. I am requesting the principal be notified and I am hoping something goes home to the parents. This boy isn't in either of Cody or Dylan's class. Is this a form of bullying....to me it is! You don't punch a kid because he is playing with somebody you don't want him too. And yes, I am very sensitive when it comes to Cody. I am only guessing I will be this way if it's the other 2 as well. I do know that Cody has enough fears and anxiety that I have to deal with - that are medically related. I am NOT adding school to the list....IN KINDERGARTEN! I have no tolerance for a bully. Yah, kids can be kids...I get that...but darn it - you don't let kids punch another kid. I don't let his brother's do it. And they are brother's - they fight! I've also asked what is the schools policy on bullies and what does the school do to prevent them. Yah, this kid just punched him, but in 3 more years when he's 9-10 years old...but is he doing. Perfecting the punch. So yah, for now...this child has hit the wrong kid. I'm not going to be quiet. I only hope that if my child did it to somebody else - the school and other parent would be just as upset.

Ortho Visit - 8 months

It all started a couple of nights ago. I noticed that Cody's top wire had moved and that all the bonding was gone. The wire was in front of his top tooth. I asked if it bothered him and he said no so I decided to watch it as we were due for our checkup in a couple of weeks. Well yesterday after school he complained all day that it hurt. I looked at it last night and didn't think we could make it to our next appointment. I tried to push it back behind his tooth but could not get it to stay. He said it hurt and I noticed that is was poking his lip. I called our ortho office this morning and they got us right in.

I talked to Cody about it last night. After he finally settled down and let me explain things he said he understood why he had to go. He knows that when the wire gets moved it hurts and honestly who wants to have pain. So once I picked him up from school today *early* he was so upset he had to go. We came home to pick up our goodies and he just sat on Brett's lap and cried. All the way to Syracuse he would pipe up and say "mommy, if I let you move the wire, will you turn the car around". Finally we made it and he cried like I've never seen before when we reached the parking lot. The "mushy" mommy wanted to sit in the back of the car with him and cry too. Just cry to get it out..cry to say damn it this isn't fair...cry because I hate to see him cry or in pain ...cry because at times I HATE this road we are on. However, the "mommy in the armor suit" showed up and I let him cry for a few minutes but then I told him that I wasn't turning the car around and we weren't leaving the parking lot without going to see Dr. D. So he got on his coat and we went inside.

He really wanted to play but after we visited the bathroom and brushed his teeth, they were ready for us. This time he picked a stuffed animal from the arch and in the room he went to watch Nick. By the time Dr. D came in he was calm and he did FANTASTIC! I was so proud of him. Dr. D cleared away some old bonding and re-positioned the wire. He said that his upper tooth is sloped on the back and that I wasn't going to be able to just pop the wire behind the tooth. (That made me feel good that we didn't do the drive for something I could of done at home) He said his top two teeth are loose but no idea when they will be ready for the tooth fairy. As he was working he had Cody bite down and he said to the tech "appliance is doing it's job but isn't going to finish it".........OK.......I let that go and let him continue to work. When he was done - I pounced! :) I asked him what he meant and he said that the appliance we have in now is moving teeth and widening the front but won't complete the job. When Cody's top 6 year molars come in he will change the appliance to the type where we will turn a key every night and he will hook the head gear to it to bring his jaw forward. Right now though Cody is just getting his first bottom molar so not sure on when the change will happen.

I was really really hoping we wouldn't have to do the jaw part of this...or have to wear the head gear. I have no idea about that and will be doing my part to hook up with parents who have "been there/done that" as that is the best way to learn. (So if you are one of them reading this - we need to talk! :) ) I think about Cody's anxiety issues and can't imagine what the next step will be like for him. Just hoping that with time and age he will be able to understand more. Of course I won't talk to him about the next step until it's time and we have dates in mind but that doesn't mean I won't be thinking about it. I need to prepare myself first. It just hit me hard tonight. Maybe it's because we have "family" that I think truly believes that once Cody turned 1 and had his palate fixed that all of his issues went "bye,bye".....they truly suck at giving support. Thankfully it's a small part and can be over looked. So yah, I had a pity party tonight. All I can say is that yes, what we have happening in our life might not be the "worst case out there" and there is always somebody "worst"...but darn it - this is the worst for "our" family. This is what we know. This is what I know and I know I have to keep it together and keep it strong to get Cody through it all. So I will blog, I will cry to those that lend me an ear, I will hug my mom as she cries too, I will talk to my sister and get my strength back, I will sit with Brett's arms around me and know that we will get through this and Cody is going to do just fine!

Here is his bite 8 months into the palate expander.....

It's been 7 months....

Even with cheek guards in - you can see the smile in his eyes! I love this little boy!!!! And this is our progress. Teeth are touching but sides still aren't in alignment with each other. As the doctor said "we are making progress but still have progress to make". We had a nice ride to Syracuse today. As we got off the exit I hear from the back seat "mommy, I don't feel good, I want to go home". He had me nervous but he didn't get sick. His nerves had kicked in. We got to the office and he wanted to play but we got called right back. He got the big TV all to himself. These offices do amaze me at what is available to the kid in the chair. Spongebob came on and we took our pictures. First them and then it's my turn. It doesn't look like much progress but those top teeth couldn't even touch his bottom - they do now. His palate tooth is moving. It's still in his palate but we have a wire hooked to it and we are moving it. His upper right tooth is still hanging on. Not causing issues for Cody so we leave it. There is no wire hooked to it. Dr. D said that it's really a "tooth fairy tooth" but right now he is gaining confidence in Cody so he is leaving it alone. He feels that when it does become loose there isn't really anything for him to grab onto and wiggle so he will most likely pull it...but for now...we leave it alone and address one thing at a time. The expander and Cody's anxiety. The other thing I love is right after Cody got in the chair and Dr. D started moving the wire and said something about tooth glue and Cody started to loose it. Dr. D reeled him in real quick. He got a little stern and told him he needed him to be his helper and that's all it took. So proud of Mr. Cody today. It is hard on me to sit in the chair and just hold his hand. After we were done we visited our normal - McDonald's.....We go back in 6 weeks.

Welcoming 2010....

I have no idea what she has in store for us - but I am excited to find out........

We had a great New Years weekend. I told the boys they could stay up but nobody made it. Brett woke up long enough to see the ball drop. After I watched some of the show - I made my way to bed. We were going to get together with my sister - who was also home, doing nothing - but with us both having kids neither of us wanted to go out in the cold after midnight. Boring, I know! Then my Dad reminded me that there was years where he couldn't keep me home on New Years....guess that is what kids do to you. I did tape the ball drop to show the boys and out of Dylan's mouth came "that's it....that was boring!"

On New Years Day I took Dylan to BCC to go ice skating. We also went with my sister. Shaun can skate and so can Karly so the 3 of them took to the ice. Dylan LOVED IT! It was his first time and he had a blast. Thanks to Uncle Shaun for showing him how to skate. He used the bar for support and did really well. Wants to go again. So now I'm checking into skate classes as he wants to get into hockey next year. Then we had a great dinner and when the kids went out to play in the snow - us adults had some Wii time! :)

I can't forget too that Cody finally lost his bottom right tooth on New Years day. It was in his mouth when he woke up. Finally it fell out. So the tooth fairy came and he's sporting a new smile!
Saturday we were off to Karly's first basketball game. She is cheering for St. Anthony's and she loves it. Can I just say how weird it is to see her on the court. I remembered back to when it was me. I loved cheering. She did great and they have a great coach and I can't wait for their competition.
Then Sunday came the day of getting my house back to normal. Our toy room looks like a mini toys-r-us anyways and then add new toys from Christmas and I felt like I was tripping. With the tree down, the room opened back up and we feel "put together". Very anxious to get the toy boxes that my dad is making. My lights are still up outside but those are going to wait for warmer weather.

Next up......Brett has surgery on the 12th to have his tonsils and adenoids removed. Plus they are shaving his uvula and trenching his palate. Yah, he's gonna be sore. But even bigger, Cody and Dylan turn 6 in less than 3 weeks. I have NO Idea where that time has gone. So we are busy planning a party and they are super excited.

So much to blog...

Well I need to write about our fantastic Christmas weekend but I'm tired and I don't think I could keep all of my thoughts straight. :) So I'll come back to xmas, promise!

I do think of my blog as something to reference back to about Cody and his journey. On Christmas eve his right bottom tooth (which has been loose) became extremely loose. I thought maybe that Santa and the tooth fairy would be coming on the same night. But.....Cody freaked out when he saw the blood and wouldn't let me near his mouth. So it has stayed. Last night, with a little brotherly help, the tooth got hit again and again more blood and it's so super loose. Just barley hanging on. He won't let me just pull it. He goes into hysterics and cries. He says things like "why do I have to loose my teeth". Forgive me but a part of me laughs cause it's a tooth and he will get an adult one, but then a part of me crumbles because he won't get an adult one for every tooth. And at the ripe age of almost 6, he has had a lot done on his mouth. Way more than most adults in a lifetime. So the tooth is still very very loose and still in his mouth. I am waiting for another "brotherly love contact" and it will be out.

Today thought he really got to me. He woke up the other morning with an itchy rash. This morning it was still present and after talking with my sister she convinced me to call the doctor. So after I got the appointment, I called home to tell Cody that I would be home to get him. What I got next I wasn't expecting. He told me he didn't want to go to the doctor, asked why he always had to go, why doesn't Dylan, how he wished Dylan was born first and not him and then Dylan would have to go, and then I faintly heard him say I wish Dylan was born with a cleft. OK.....that last one got me!!!!! Thankfully, I was at work and he quickly gave the phone to his dad. I really hope he doesn't think he has all of this because he was born first. What do I say to him? That god thought he was super special. While I agree - I question it at times. So friends...family....I'm puzzled....what have you said?

Ortho Visit 12.08.09

Not the best picture (I forgot my camera so I used my camera phone) but this is Cody's bite as of today. And for most of you it doesn't look that good but trust me - this is. Before the appliance you couldn't see his top teeth as they sat behind the bottom ones. He is coming along great.

Dr. D was very proud of his clean teeth and that he wore his special t-shirt. (They give a tshirt to all the kids wearing appliances and if you wear them you get a raffle ticket for a Target gift card). At first Dr. D tried to use some bonding material and glue the wire to the top teeth. But after he did it - it all came off. He is working with very little teeth. So instead he bent the wire and repositioned it. He still has one loose tooth on the bottom that we need to try and wiggle out of there. On the top the dead tooth is still holding on. He moved the wire from it as there is nothing to work against. He said he'll leave the tooth though as long as it doesn't cause him issues. So we will just watch it.

We don't have to go back for 6 weeks. Yeah! The weird thing is that is AFTER their birthday! UGH - they are turning 6 right around the corner. Crazy!

Meetings with our 2 favorite doctor's

Cody had a pretty busy day today. He got out of school at noon to ride to Syracuse to meet with his 2 favorite doctors. We saw Dr. Tatum first. It was a great visit. Cody is very fond of him and I really do love to see the patient/doctor relationship building. His ears are good. Tubes aren't in perfectly but are in enough to leave them alone. He has had this same set for 3 1/2 years now. He checked for the fistula but honestly said he couldn't see much of one. He said there is a small hole and asked if we were having any food out of the nose (no we aren't), any speech issues besides the slight slurring from the appliance (no) and said that we'll just leave well enough alone. No need to go digging for trouble! I couldn't agree more! We talked about a bone graft but he said right now it all depends on those adult teeth. He will leave that call up to Dr. Dillingham and when he says it's time - Dr. Tatum will do it. I trust them both that that is good enough for me.


So we left from seeing Dr. Tatum and had an hour to kill. Leave it to me to find a shopping center. We went and walked around Target. Found the card game Crazy 8's that the boys have a new found love of thanks to their cousin Karly. It is a cute game!



We got to Dr. Dillingham's a little early. Brushed his teeth and they were ready for us. No waiting today. I like that! Cody got the cheek guards in and pictures taken. I brought my camera along and got a shot myself. Here is Cody's bite 4 months after having the palate expander put on:

Pretty cool, huh? He can almost touch top to bottom. We need to push out the top front teeth to hopefully get his bottom ones behind his uppers. His top right tooth is about dead. Although it's not causing him any pain so we are leaving it for now. He moved the wires to help push the upper teeth and immediately Cody felt the pressure. He got his prizes, we go back in 4 weeks and we were out of there by 4:11......4 minutes before our regular scheduled visit. I was excited. I thought maybe we would get home early..................my luck ran out.

We pulled into McDonald's to get his special treat "chicken nugget happy meal" when he says, "mom, I don't want my food". What? What is wrong? He says he doesn't feel good. I looked back and saw the look..he was going to get sick. I threw him a plastic bag I had and he got sick in that. We ordered food and went and parked and he said he was OK. I left him another bag "just in case". I got down the road when he kept getting sick. Oh my heck....I am all by myself. I turn into a parking lot and get out - the bag broke and he was covered. Along with the car seat, seat and the floor. Wonderful! I have 2 napkins in my entire van. I look around and saw the lone Wiggles blanket - sorry blanket you're all I got. Thankfully I had an extra shirt for Cody, so he rode home in that and my coat around his legs. I will be better prepared next time and every other time. That was horrible as I needed to drive. Thankfully he just slept and was fine. I think he worked himself up so much and then the pressure from moving the wire that his stomach just couldn't take it. :(

Cody lost his first tooth

Yeah! Cody is so excited to have finally caught up to his brother. The tooth has been loose for a little bit but Cody was nervous to have it come out. He would work it a little with his tongue but that's it. So tonight, as I was telling the boys not to screw around cause somebody would get hurt.......two minutes later Cody comes crying with blood on his hands. After quick review, I told him his tooth was out. But "where" was the tooth??? Got a washcloth to help the bleeding, checked the clothes....then Dylan says "my sock got caught on his mouth"....(ah hah, so the sock did it)........checked the sock, no tooth. Cody was getting sad thinking the tooth fairy wouldn't come without a tooth. I told him we would write a note. We went back to the "scene of the crime" (the porch) and got on my hands and knees and I found it! It is safely under his pillow and waiting for the tooth fairy to arrive!!! :)

Cody's missing tooth!

Cody holding his tooth

Caught off guard....

So today, I had a conversation with the grade-mom in charge of Cody's class room. She is the head person in charge of communicating amongst us volunteers for parties and such. (first experience with that too)....But as we were talking and because you don't have much inter-action with the parents as we did in pre-school, I asked her who her child was. She said "john". Oh Ok...I've heard Cody talk about him but that's it. She says to me "Who's Cody, what does he look like?"....

I'll be honest, I wanted to say "he's short"..........ha,ha,ha....but then thought "duh Kelly all the kids are short - they are in Kindergarten". I hate to admit I came out with "he has blondish/brown hair"...(Yah that must of narrowed it down for her)..............but I will be darned if I was going to say "He's the kid with scars on his lip". I almost told her that but then thought I will not/can not describe Cody to another parent of which I don't know and who doesn't know Cody that way. He is way more than those scars. I'm not used to describing my kids, either they are with me or people just know what they look like. So I have to come up with something. But she caught me way off guard! So go ahead....ask! "What does Cody look like"????

He:

• has blondish/brown short hair
• has an amazing smile
• has big brown eyes
• has long eyelashes
• wears a blue winter coat.
• carries a Pokemon backpack

If you happen to notice he "has scars" then good for you! If you wanna know why, ask! But I will not describe him that way!

Ortho Update

Cody and I ventured to Syracuse for another ortho check-up. Dr. Scott was very proud of his clean teeth and the fact that he worse his special t-shirt so he got 2 more raffle tickets and got to pick a prize from the "big" prize table. So that was a big deal!!!!

The appliance is doing it's job. He said he can almost clench down and hit teeth to teeth. Yeah. But...with good there is bad and we have a few issues to watch. His top right tooth has been worn down so much from the cross bite that he is now exposing nerve. I don't think a lot of nerve as Cody has not complained and I imagine he would. However, we had our last visit 4 weeks ago so all of this stuff has happened in that amount of time. So we need to watch it unless I call and say we have an issue. If the nerve becomes more exposed then they will need to pull it. He took a few new x-rays to send to Dr. Tatum. It appears that he is missing 2 top adult teeth. I was hoping for only one - at the site of the cleft where his gum was split as a baby. But both adult teeth - one on either side of his front teeth is missing. So down the road we will be talking options for adult teeth. Implants, teeth on a retainer, moving back teeth forward and re-shaping......

Then the most hard to swallow news was that he has a fistula. For those outside the craniofacial world - that is an opening in the palate. Right now his is like a pin-hole size. It's not huge as I could only see it as his head was tilted back with a bright light shining on it. Dr. Scott sprayed some air up there and it really bothered Cody as it was going right into his nasal cavity and tickled horribly. I was extremely sad to hear that news. We need to watch it to see if it gets bigger. Of course with the hole comes the possibility of speech issues and food/drink coming out of his nose. So we wait and see what we are up for.

I hate to admit it but I did have my little pity party in the car for like 5 minutes. I'm entitled right? I think so. I hate that at the age of 5 we have to think about "adult" teeth and the lack of them. I hate that his palate is opening back up. We've been so lucky that ours hasn't. I know that there are many kids that do and are much bigger - but this is my child, our situation and I only know that. Not to mention I am taking Tyler to the hospital tomorrow for another surgery and it just plain ole sucks! We see Dr. Scott back in 6 weeks.

A very funny story though.............as Dr. Scott had Cody in his chair he asked Cody how old he was? Cody said 5. Dr. Scott said "when will you turn 6"? Cody replied "on my next birthday"!!! We all laughed. Dr. Scott realized he walked into that.

Cody's team visit update

Cody had both his yearly craniofacial team visit and his first orthodontic visit since getting his palate expander on yesterday. We had a long day in Syracuse but it yielded good results. I'll break it down by visits.

1. First we met with Dr. Tatum's staff as he was performing an emergency surgery. The lady who first looked in Cody's ears said "tubes are great". I got a puzzled look on my face and said "really?" Cause we were just here in March due to ear issues and Dr. Tatum said tubes were on there way out. I got back to the waiting room and told Brett I didn't exactly trust that opinion. The other's wanted to talk about all things in the distant future and to be honest they were things I knew and things that I never even asked about. She felt the need to tell me that they can't fix his nose until his finished growing. Some days I feel smarter than them. (Sigh)

2. We met with Eileen in speech. I was very curious what she would offer about his speech since getting the palate expander on. He repeated his phrases (even the one when she said "speak up nice and clear cause I'm getting old"). She said a few of his sounds 'ch'/'sh'/etc are a little garbled but it is due to the expander and it will get better when that comes off. He should have no lasting speech issues from the expander. No air escaping out the nose still - good news! So over-all she was very impressed with him and his speech! Yeah!

3. Then came hearing. They checked his ears and said tubes were OK although they said they couldn't see them as clearly as the first person made it out to be. He passed his hearing test with flying colors and we were out of there.

4. Next up were pictures. They take lots of pictures of all different angels for their records to help them watch his growth. This time the photographer said "not for the cover". Meaning - he is the same guy that took Cody's pictures before for the craniofacial brochure that he is on.

5. Met back up with Dr. Tatum and crew. This time a different outcome on the ear tubes. Yes they are in but they are not in straight but "funky" as the doctor put it and he told me to notify him of his first infection and we'll have to talk. (at this point the little person inside me wanted to scream I was right, but didn't) He was very impressed with the palate expander. All the students in the room got to take a peak too. I asked what is next and he thinks bone graft although we aren't sure on a time frame yet. Could be another year. He had us ask Dr. Dillingham to send over x-rays so he could take a look and then the two of them would talk. Dr. Tatum told Cody he is "double studly" for having that palate expander in his mouth. Cody just smiles! And it's always nice to have the doctor tell the room that this is their "poster child". I'm very happy that he stands behind Cody's repair. I completely agree but I am probably bias.

6. Our last stop of the day was genetics and really a complete waste of time. I realize it's important to see them to notify them of family changes but we have none. No new children, no illnesses, nothing. Just for him to tell me again that they have no idea why clefts happen and that there are no test to be done. Again, I knew this much. I swear the kid was just out of college. Sorry that is probably mean but at this point it's a huge waste of time. And Cody would of much rather been playing in the play room.

To finish out our doctor day, we met with Dr. Dillingham for our first visit. Cody wore his special t-shirt and got a raffle ticket. Then he had very clean teeth and appliance and he got another. Next time he gets a prize from the "big table" and prizes are very important when you are 5. Dr. D made a small adjustment to the wire. Then he used some bonding material to hook the wire to the tooth better. The tooth is small and doesn't give the wire a lot to push against. Cody wasn't pleased with having an adjustment made but handled it well. We didn't know he had to so therefore we didn't tell him and there was no time to get himself worked up over it. While that works I still like to be honest with Cody about what is going on. Dr. D congratulated Mom and Dad on great teeth cleaning. I'm sorry for that one I have to take the congrats away from Dad as he hasn't done any of it. Cody and I are a great little team and we have found what works to make teeth cleaning fun! We go back for another visit at the end of September.

In between visits we had a little bit of time and went over to the Carousal Mall. I've only been once and Brett has never been. We had a nice little lunch with Cody and let him shop around for a special prize for the day. He of course found another bakugan that we just HAD to have and then he was searching for a little something for his brother's too.

I didn't get to speak to anybody about his anxiety fears. He'll have a good day and I'll think to myself that everything is fine and it's just a phase but then other days something will rear it's head and I'll be lost. Yesterday we did good with the doctor visit - it came time when we went into the building and had to ride the elevator that he started to cry cause he didn't want to. We were pressed on time and there was no option for stairs and he just did it. And it was fine! We rode it down and he was fine. We were at the mall and went to go from one level to another - and went to take the elevator and OMG he LOST it. He cried and ran away from us - people looking at us like WTF - he did not want to ride that elevator. So we didn't. But I have no idea where that fear came from. So.....I still haven't heard back from the psychologist but will make another call as I think it's necessary.

We will see Dr. Tatum in 6 months unless something comes up with his ears and Dr. Dillingham in Sept.

Right Decisions

For the past couple of days Cody has complained that his mouth hurt. I would have him tip back and open wide and take a look but I just couldn't see anything. Then he wouldn't say anything about it. Last night we came to bed and he said his mouth hurt. This morning when I woke up he said his mouth hurt. Then my mom called this afternoon and I knew I had to make a call. The complaining was getting shorter and shorter. I must say I really do love our choice for an orthodontist. He wasn't in the office today but after speaking with his staff - they gave me both his home phone and cell number. So I call the cell and he answers. Doesn't seem bothered by the call AT ALL. We chat. Cody says that his tooth hurts and it's the tooth where the appliance is resting against - 3rd one on the right. Dr. Scott feels a piece of food could of become trapped and has now infected the gums. He told me to brush that area with peroxide, rub a little benadryl on it and give tylenol. Then he gave me his home number and told me to call over the weekend if I need anything. Wow - and all of this while he is on his boat fishing! Now that is what I call a doctor committed to his patients. We brushed tonight with peroxide and the bristles and mouth foamed up so I am thinking his gums are in fact infected. Hopefully this will work and will mask the problem till we see him on Wednesday for our check up.

I also decided yesterday that I would look into the recent anxiety issues with Cody. I tried to talk with our ped. and for the first time I felt like she just didn't get it. So I emailed our team coordinator to check if there was a child psychologist on the team that we could talk with. We don't have one but the director called me back with a name she highly recommends. She already talked with him and he said he would talk with me. So I am very thankful. I guess I just need to talk with somebody that can either tell me "yes there is an issue" or "it's OK mom, he's fine".

It just all started with his palate expander. Up till this point, through all doctor visits I have had a great relationship with Cody about telling him what is up. He does great at team visits and seems to understand. Then again he is only 5 and there is really only so much a 5 year old can understand. Heck I don't understand it all the time. His anxiety kicked in over drive when he got that expander on. Then it was like two weeks after that he started crying before bed. To the point of being sick. However, right about that time we were getting ready to go to my brother's. A place he had been before. While there he went to bed fine. We got home and it started again. He told me he is "nervous"....but I have no idea over what. He hasn't wanted to go to the park with his brothers - but would rather stay home. It's almost as if he doesn't want to do anything new. I told him about a museum we are going to and he cried. He's not in school so there are no kids to pick on him. Although I'm not looking forward to him starting Kindergarten where there are many new changes ahead. He is home with just his brothers and my Mom - the way it's been forever. I'm not entirely sure what is up so that is why I am thinking a child psychologist could help. Somebody that might also have dealt with kids that have had many medical procedures. It does take a toll on them. I am not crazy and will do whatever I have to to get to the bottom of it. Patience is the start. However, knowing that we have a team of great doctor's on Cody's side means the world to me. It is during these times that I know we made the right decision for who is involved in his care.

Bedtime...Update

It's been a few days since I wrote about our bedtime issues with Cody. We went on vacation for 4 days and not once while on vacation did he give me a fit. So that was a big break through. Our first night home (Tuesday night) he cried a little and told me he was "nervous" but that was all I could get out of him. He fell asleep pretty quick. The past 2 nights have been good. He's fallen asleep with no crying. Maybe it was just anxiety about our vacation. Even though he has been to my brother's house before. Maybe it was over going on a boat ride that we had talked about doing. He was pretty sure he didn't want to 'leave the land'. He stayed with Kevin and Kristie while we went on the boat and was fine with that. So maybe he just had some anxiety about doing something new. We will still watch it. His team visit is 8/12 and I plan to talk with them then.

Bedtime....

We had a great night tonight. All the kids had a great day playing outside - even Cody. He was actually the first to be dressed and wanted to go out and play. Yeah! He had a great day. Tonight we met my sister at Friendly's for dinner and then went to the grocery store so they could pick snacks out for our trip to OC. While there they each got a plastic bag and could pick from the bins. Cody did mention at one time, "it's OK mom I know I can't have anything gummy." I didn't say anything but found him some "cool" other kinds that he could have.

We get home and it's time for bed and yep, the tears started again. I have to say not as bad as last night. He's asleep as I type. There was no throwing up this time but he had 3 trips to the bathroom. He became very teary eyed and I tried to divert it to something else. He wanted to be held - so I held him and then I think his eyes just wanted to close so he said he wanted back on his pillow.

I asked him if something was wrong. He tells me "no"....but then why all of a sudden are we having night time issues. We haven't had them before. I've done some searching today on the internet but I'm not a doctor. I don't want to jump to conclusions......but I sometimes can't help myself. He has a lot of the symptoms of PTSD.....but is it really that? Can just getting a palate expander on cause that? And if so, what on earth are we in for when he has an actual surgery again. I don't even want to think of it. I'm not saying he has it....and maybe this will all pass. Maybe we have hit a bad week for some reason.

This is from one website I found:
A child with PTSD may also re-experience the traumatic event by:
- developing repeated physical or emotional symptoms when the child is reminded of the event (while I don't remind him that he got on the palate expander every day - he is reminded of it when he has to make choices about his eating. He just can not have anything sticky in his mouth. He is reminded of it everytime he moves his tongue. It's in his mouth - how can he not be reminded of it everyday)

Children with PTSD may also show the following symptoms:
-losing interest in activities
-having physical symptoms such as headaches and stomachaches (just stomachaches to the point of throwing up at times)
-showing more sudden and extreme emotional reactions
-having problems falling or staying asleep
(these 4 things he has to some degree.)

Oh heck...I don't know. If anybody can shed some light - I am all for it.