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!!!

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.

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. :(

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.

Palate expander pictures

Here is my brave man just minutes after we left the office. He realized that is wasn't "so bad" and that nobody could see it. He was all smiles, he loved the fact that he got to keep his teeth to show and that a new Bakugan movie was in the player playing for our ride home.

Then he opened wide so I could take an inside shot. We have our first follow up appointment on 7/29. So far, he is doing really well. He is back to his normal diet. His speech seems OK however I am watching this. I have noticed as he gets tired he gets harder to understand. So I just find myself listening better. When we see the team in August the ST will probably give me a better understanding of things. He hasn't really complained of having it in. Again when he is tired, he gets a little weepy and says he wishes he didn't have to wear it. I wish that to! BUT! It was a little sad having to tell him NO he couldn't have a piece of laffy taffy (he loves that stuff) and to watch his smile turn upside down. I just explained that he couldn't have it now but will be able to sometime in the future. He was fine with that and moved on to sweat tarts! :)

Palate Expander is on

Today Cody got his palate expander on. Since our last ortho visit I have talked with Cody - not every day - but at different times to try and get him to understand just what was going to happen. Last night the anxiety came to head and he cried. As best I could, I held back my own tears and told him everything would be OK.

Our morning started out at 6:30 as we got in the car for our hour and a half ride. As we were pulling into the parking lot he got that "look". We got him dressed and went inside. He didn't want to play and I could see the tears coming. Thankfully Brett was wish us cause lord knows somebody had to be brave and not cry. To see Cody cry broke my heart. We've been so quite in this journey of ours and now to start a new chapter and one that Cody will remember, it got the best of me at times. So Brett and Cody played with some ball game on the wall and I chatted with a mom who was there for their first visit - her son is 2 and was also born with a cleft. Next came our name in the rotation and Cody went to the bathroom for the 3rd time. That allowed me time to tell the nurse and doctor that he was having some anxiety with this.

Well I love our ortho - Dr. Scott - He sat Cody in the chair, gave him his mold of his teeth and told him to keep em to "show em off"....then showed him how the appliance was going to work. Cody got very emotional and Dr. Scott asked him to tell him what was wrong in his big boy voice. Cody said he didn't want to be there and didn't want that in his mouth. Dr. Scott worked his magic and in it went. It didn't take long. The office has a reward program. So Cody received his special tie dyed t-shirt to wear on future visits. He was also given a raffle ticket and after 3 raffle tickets - he gets a big prize. Then our name is in a drawing for a Target gift card. We headed out and went to McDonald's. Luckily, this is just down the street and we will get to know it well I am sure. Sad thing to a 5 year old though is they don't serve french fries at 9:30 in the morning. He wanted eggs and bacon so we got him that. I think he ate about a 1/2 a piece of bacon but did drink all his chocolate milk.

Upkeep tonight has been tylenol every 4 hours, he's had milk shakes, eggs, toasted cheese sandwich. His activity has been great. I've not noticed any big changes in speech. I've read that some people can tell immediately but he's doing very good so far.

My surprise came tonight when the phone rang and I saw on the caller ID that it was the doctor. He called to check up on him and make sure he was doing OK. That means sooooooooo much to me. He told me to give him a squeeze and tell him he was very proud of him. He told me to watch the next couple days as he may complain of his teeth hurting as the teeth are starting to move. So we'll keep tylenol on hand and more milk shakes.

We go back on 7/29 for another check up. Dr. Scott said the appointments will get easier and easier from here. I have pictures - just not tonight.

Finding the right words...

Ok....I really think I will be put to the test in the next couple of weeks. Cody had a pretty rough night of sleeping last night. Woke up a lot and just sat straight up. Now I don't know if it was from the dental visit but I can say he hasn't done this before and yesterday was our dental visit and he did experience some pain and discomfort. Tonight, I was sitting with him and we were talking about the rings on his teeth and I started to tell him that he was going to have to get them back on and that the dentist was making him something he had to wear in his mouth. He just covered his little mouth and started to cry and said no. Really, how on earth am I going to do this? How on earth do I really explain this to him? I told him it was to fix his mouth and all he wanted to know was how long. I can't even explain that as 9 to 12 months seems like an eternity to him especially when he is trying to get down the days of the week still. We've talked about the cool fact of eating lots of ice cream and stuff. His last surgery was when he was 2 and I doubt he remembers that. Ever since then it's just been check ups and things that certainly didn't change how he feels. So where do I find the words to explain this to him? Especially when at times I don't understand the "why" in all of this either. This next step has been an emotional one for me so I don't doubt there will be a lot of tears shed. I guess for now I just need to talk with him a little bit everyday as those 2 weeks will be here before we know it and we will be back in that car. For any of you that have traveled this road and have some advice - I welcome it!

Ortho Visit - 2 week count down

Cody and us went to Syracuse today for a meeting with the orthodontist. This trip was for pictures and measurements and discuss what type of appliance he will get put on and when. He did fantastic - he always does fantastic. At times I really hate that he has to be so grown up. I really had no idea what the visit was going to be like so it was hard to prepare him for it. They first got out this tackle box looking thing filled with all different size metal rings. The rings are made to go around the molars and will be the anchor for the appliance. After about 6 different tries - we found our number. #30 in size. (whatever that means) Putting these on did not look pleasant and as I am standing from a far telling Cody it will be OK and reaching my hand into him - did I want to snatch him out of the chair and call the whole thing off. Do we have to fix his mouth? I know we do but........SO then we moved on to a mold. That didn't look pleasant either. His mouth was full of this foam/cement and trying to breath out his tiny nostrils wasn't working so they had him panting like a dog and that worked. We just had to keep reminding him to breath. He did a great job and was rewarded with a new bakugan.

Dr. Scott said that we won't have a typical palate expander in his mouth. This one will be stationary with no screws for us to turn. Which is best for Cody and us as far as maintenance. Yeah....all we will need to do is keep his teeth brushed and the appliance clean. Doesn't seem to bad. He said that the back of his palate doesn't need expanding as it's got a good shape - it is just the front of his palate that has collapsed like a "V"....so the appliance will turn that into a "U". He will have to wear it for 9 to 12 months. It will have a spring like movement to it and will work somehow. Great explanation huh? LOL....I have no idea how it will work as I have no idea what it looks like. He is making one.

I have to say I really love this dentist. He is WONDERFUL with Cody. In the way he talks with him......telling Cody he is "his helper", "handsome", giving him encouragement. That is exactly how a pediatric doctor should talk to his kids. Then as he was talking with Brett and I and answering our questions and explaining things I could see how he already knows what he will do and where Dr. Tatum will pick up. The two obviously work great together and the two sides just mesh together. Such a great feeling to have.

Now the mommy nerves will take over for the next two weeks. We go back to Syracuse on 7/2 and his appliance will get put on. He said for the first few days he will need to be on a liquid diet until he feels like eating regular. He said it's hard for the kids to understand it's OK to touch the wires with their tongues but once they do they tolerate it well. I can get sick to my stomach just thinking about him putting this on and not knowing 100% how it is going to feel. I can say "It's OK" but I really don't know that. I need to figure out a way to tell him what is going to happen but am not sure how. He looks at me with those big brown eyes and I can see the questions. Honestly I am NOT looking forward to that day...7/2....but the 3 of us will get through this together as we always do.

Teeth, Teeth and Teeth

Today has been a "toothy" day! It all started this morning as the boys were in the kitchen eating for the hundredth time before noon. I guess maybe they were done eating and cleaning themselves up. I wasn't in the room but as I piece the puzzle back together I'm assuming Dylan was chewing on a wash cloth (cause he likes to) and Tyler decided it would be fun to yank it out of his mouth. Except Dylan wasn't giving in - so a tug of war began. Next I know, Dylan came running in the living room his mouth all bloody and Tyler went running up stairs. I try to figure out where the bleeding is coming from when I realize - he lost another tooth! This make #2 for him. I didn't even realize it was loose. Certainly wasn't loose like his first tooth. But it's out and we can't find it. So we have to write the tooth fairy a note explaining and hope he stills leaves the cash behind!
Cody goes to see his orthodontist tomorrow to have xrays and molds taken of his teeth. Then we will sit down and discuss what appliance he will wear and I am guessing get a date as to when it will get put on. Very nervous about tomorrow. So I wanted to take a picture of his mouth pre-ortho! (And if you can tell from the picture - if a tooth looks yellow it's really not. That is where his bottom teeth have worn the enamel off the top teeth. Nice huh?
Our Saturday was pretty un-eventful. We had a nice weather so I dug out their pool and we got out the water balloons and got wet! I realized never to trust an almost 4 year old with a hose - he soaked me! :) Today we had a 1st birthday party to attend. It was at a really nice park and the kids had a lot of fun.

Things I realized

There are a few things I realized today. I realized that I am so very proud of Cody. Ok, this isn't the first time I have figured this out but he was such a trooper getting his blood taken. Brett and he arrived at the hospital and he came walking down the hall carrying his backpack. I was curious.....he felt the need to bring his turtle, turtwig, dolphin, juice cup, baggie full of gold fish and donuts - all for a few minute trip to get blood taken! How cute is that! They drew the one vial and the guy put a bugs bunny band aid on him. The guy made the comment "he probably doesn't know who that is"....you are so right. Thankfully, they did have Spongebob stickers and he got 6 of them. He was so happy as he didn't have to ask for some for his brothers.

That vial of blood is going to determine our next step. If his TSH level comes back elevated again, I will contact the pediatric endo and set up an initial visit. If the level comes back normal then I will contact Dr. Tatum and see what he suggest our next step is in following through on the adenoids.

Yesterday I realized something else. My little boys aren't so little anymore. We have moved onto different toys. I actually had to go on line last night to look up Dylan's new favorite - Tech Deck. They have a website for this and an online community. Really! In case you have wondered what you do with these little skate boards that are way to small for anybody to stand on - well......your fingers become the "person" and you can do tricks on them with your fingers! So of course I need to figure this out! This is gonna be good. Then I went onto the Bakugan website - I swear they have a website for everything. I finally figured these things out too. The little ball has a magnet in them. In order to "battle" you need to place the magnetized card on the floor and roll your ball to battle. These come with accessories too - a battle ground, shooter and carrying case. Santa, Santa, Santa.......read up!

My last realization came last night. I realized that you can get a head in this world if you know somebody. Last night I read the online newspaper from my hometown area. I came upon a story with the word "smile" in it. I was intrigued so I clicked on it. It was about a little boy that has a cleft lip and palate and how he got his surgery done through Operation Smile. What I know about this organization is that they don't offer "free" surgeries to anybody in the US. They do all of there surgeries for other countries. While I won't say anything bad about that as they do offer great work - I know to many families living and struggling with this diagnosis right here in the US. So I choose to stay home on this issue. The family got to this organization because the mom's father works for a company and the owner of that company knows the CEO/Founder of Operation Smile. That is neither here nor there. Very happy the family/little boy is getting good care and it's not costing them a penny. However, at the end of the article they give Operation Smiles website and fundraising plea. What I know is that it is so misleading. If the family - two towns over read the story - and then a week later had a baby with a cleft and they lived in the US - Operation Smile is not going to offer them free services. I once contacted them about an Amish family and I got the "thank you for thinking of us, we can't help you, maybe these people could" response back. So......I know I am getting off on a tangent here BUT I guess this article just shows you can't believe everything you read. This family got free surgeries and travel cost because somebody knew somebody. NOT because this organization does this for families in the US.

I did however, contact the editor of the paper and ask to be put in touch with the writer with hopes of coming into contact with the family. I would like them to join Lucky Smiles and become a part of our NY family. Regardless of where/how they receive care, they are walking the same road as I am and so many other families and we are here to support them.

Ortho Visit #2

We met Dr. Scott today. 2 words - LOVE HIM! Now onto the details.......

As we were waiting in the lobby, Cody played in the real boat that's in the office. Once inside the doors we were given a great tour of the entire place. The inside of this office looks like the inside of a ship. Awesome. Dr. Scott came right in and one of his first words to Cody was "I can't wait to be your friend". After some looking, poking, prodding, talking, questions, you name it - this is what we got.

On the questionnaire was a question on thyroid. I marked it as "testing" so we first talked about that. What were the signs - Cody always being tired - so then he looked at his profile xray and said "those adenoids are huge". (Not the first time we have heard that). He asked if Cody was a mouth breather - "yes". Basically being a mouth breather, you don't release the carbon monoxide out of your lungs. So your heart has to work harder to pump blood to your body. Hence could be why Cody is so tired. He said though to continue testing the thyroid because of his TSH level being high like it was. So we really don't have an answer about that. He also said that being a mouth breather - your tongue sits behind the bottom teeth. When you breath out of your nose - your tongue rest behind the upper teeth and snug up against the palate. In children and during their development, their tongue can help guide their upper jaw forward as they grow. But if you can't breath out of your nose then that won't work. Well because of Cody having his palate repaired and any scar tends to tighten up - that scar brought his palate in. So the thought is - we should look to clear his airway and get him breathing out of his nose and then with the help of an appliance and Cody's tongue and growth his palate will move out to make a better U shaped arch and his tongue will help guide his jaw forward. Hopefully preventing a jaw distraction later.

What does this mean.....well not a 100% sure yet. Dr. Scott will discuss with Dr. Tatum. Dr. Scott would like the adenoids to come out. I am hesitant to remove them completely as that tissue helps Cody's soft palate close off therefore when Cody talks he does not sound hypernasal. Back 2 years ago when Cody had his tonsils removed, Dr. Tatum said the adenoids were large but instead we tried to shrink them with nasal spray. We saw the xrays today and could see Cody's airway. It's not completely closed off but it's not as open as at the other end. (picture a garden hose) I will follow up next week with Dr. Tatum and see about a consult with him. We would normally see him in Dec. anyway. My heart is telling me surgery down the road. Dr. Scott would like to start the expander in the spring. He would do it sooner but because of the drive and our lovely northern winters - we are waiting till spring. It should be a 6 month treatment (hopefully) and it would be out before he started Kindergarten.

Things we have to do.......Dr. Scott gave us tongue depressors and would like us to place them behind Cody's upper teeth and have him bite down and try to move those front teeth forward. Right now they are at an angle. Keep brushing!!!! Talk with Insurance and see who is going to pay for what and how much out of pocket we need to come up with. Today was a shocker of $93. Hopefully insurance pays some of that back. Treatment plan is $850. Let the insurance battle begin.

Dr. Scott handed out many compliments. He asked me at one point if I was a nurse. No, but I sure do feel that way most days. I just choose to be a very involved parent. He said Cody's dental hygiene is awesome. He couldn't get over Cody's repair. He said it is fantastic and the lines are so symmetrical.

Other teeth things - Cody's palate tooth is a "hybrid". Meaning 90% baby tooth, 10% adult. He said if it falls out there doesn't appear to have an adult tooth behind it. If it stays, then we can pull it into place and reshape it and whala - a tooth! He also commented on the amount of bone in his gum. He really feels that if we can get the palate widened out - that growth will help to push that gum line together even more and maybe bone will grow on it's own. Otherwise, a very little bone graft. (which Dr. tatum has told us before).

That's for staying with me........What we decided so far. While we loved Dr. Mark, we believe the place for us is with Dr. Scott. The two teams really do do things differently and Dr. Scott is very in tune with what Dr. Tatum wants. Brett and I both left feeling extremely happy and it was Brett that made the comment first that that was "home".

After all of this - Cody being a huge trooper the entire day. Really charming the entire staff. We headed to the hospital for our photo shoot. Can I just say he has "Flower" in him and was very photogenic. They got several shots and I really hope what they were looking for.

Any questions - fire away!!!!

Ortho Visit

So today was our much anticipated Ortho visit. I get so nervous/worked up before these visits. Not only at the appointment but even to call and make them. We have been "quite" for 2 years now and I know it's going to change - just not sure when. Thankfully it's going to remain quite for now. Now the details.......We got to Dr. Mark's office and was in ahh. Their office is beautiful and very friendly. Once signed in we were showed the "game room" and Brett thought he was in heaven. This was the one time you wanted them to be late but they weren't. We went over all the paperwork with Lynne (who also has twins) and felt right at home. Cody was given some teeth molds to play with and he thought that was pretty neat. Dr. Mark came in and hit it right off with Cody. Some of the paperwork they had given us was a Favorite Things for the child. One question was "favorite music"....well at 4 do you really have 'favorite' anything....doesn't it change like all the time. So I had wrote "Wiggles". Although we don't watch them anymore he likes their music. Dr. Mark (who has 5 kids) instantly started talking about the Wiggles and Greg being his favorite. I shared my up-to-date knowledge about Greg. Then I laughed because it's not often you can talk "wiggles" with a doctor. Dr. Mark is great! Cody then sat and listened and followed direction while he was examined thoroughly. I haven't said yet but I am so proud of my little man. Then we all talked. Dr. Mark said he would do whatever we wanted based on our report from Syracuse. But he feels in his professional opinion it's best to wait a little bit. He said Cody does have a cross-bite although not severe. His midline is off just a little bit and actually shows characteristics of a unilateral palate instead of a bilateral. Which is better for fixing. He said really only one side of the palate would need to be expanded. It does make sense as Cody's gum line was only split on one side and not both. He said Cody has good strong jaws.....he is missing his incisor at the cleft spot, but may have an extra one in the palate itself. He could see his adult teeth (from the xray) and is actually thinking he may need teeth removed in order to fit all of his teeth in his mouth. He really recommends not doing anything now and would like to monitor his growth over the year and see us back next year.

I do agree with everything he said. I trust this doctor as I have seen his work. We will though keep our other Ortho appointment for October 1st in Syracuse to see what is suggested then. If both doctor's concur then we will stay local and see Dr. Mark. If not, well then I'm not sure what I'll do as I will be totally confused. Probably will discuss it all with Dr. Tatum to see what he says.

But man...can I say one more time how proud of Cody I am. He got a few ants in his pants as the doctor and us were discussing things and Lynne asked if he wanted to go to the playroom. Off he went - by himself - when we went out he was playing with a friend. He just "goes with the flow" of things. Never complains and is such a trooper. Made my heart very proud of him!!