What we didn't know.

When Axel's teeth were rotting out of his head, we just assumed he was in pain. He gave us no indication that he was, but how could he NOT be?

When he ate, he very carefully, and with great intention, used his tongue to move bites of food around in his mouth to what we assumed were less sensitive spots.

It's been a week since his dental work was done. Saturday he ate THREE bowls of cereal for breakfast. He hasn't done that again since, but man! Guess he was hungry!

Last night I was having problems sleeping and was sitting on the couch at 2:00 a.m. when I kept hearing his strange, rythmic noises. I had no clue what it was, but figured it had something to do with the wind we've been having here.  Finally after about 15 minutes I went to investigate. The noise was coming from Axel's room. He was laying on his stomach, banging his face on his pillow. I've only seen him do this a couple of times, but never has it lasted so long. Apparently his face doesn't hurt anymore so he can do it for prolonged periods.

And finally, the latest discovering was made this morning. When I went in to wake him up for the day he was sucking his thumb. I've never seen him suck his thumb, nor does he do ANY finger chewing like so many kids with Down syndrome do. Angela's hands are full of callouses from her doing it in her sleep. (she used to do it when awake too, but we haven't seen it in well over a year.....knocking on wood.) Axel has no such callouses so this habit is either brand new, or reborn since his teeth no longer hurt.

We are home!

We are home, and Axel is comfortably sitting on the couch with his Papa. He has a glossy ad in hand, so life is all good! He did eat some pudding (the first time he's eaten in 24 hours.) and I'm sure he's going to want more of something before he goes to bed!

Thank you so much, everyone, for your thoughts and prayers for Axel today. They were very much felt and appreciated!

Also, a couple people have posted comments saying they can't find my email address on my blog. if You have something you'd like to ask me about privately, look over to my right sidebar and find my profile. At the very bottom is a "view my complete profile" link, where you can find my email address.

Goodbye teeth!

Tomorrow morning is Axel's dental surgery. I'm SO NERVOUS for several reasons, the first one being the initial intubation.

Remember last month, when I posted the pictures of Axel's MRI that showed just how his spinal cord is compromised? That issue requires Axel to undergo fiber optic intubation.  I found a website describing training someone to do the procedure. Guess what? I am all for allowing student doctors to work with my kids, but there will be no newbies assisting in intubating Axel tomorrow. A friend of mine suggested writing "Do Not Hyper-Extend!" on his chin! LOL

So, once the intubation is done, Axel has LOTS of work to be done in that little mouth of his! *Disclaimer* Since there are several new readers here, Axel was adopted in December 2010. He did not have dental care available to him where he was, so we've spent the last 2 1/2 months getting all of his medical issues addressed.*

Those holes you see where upper teeth should be are where he has teeth that have broken off, and there are still pieces of teeth in the holes. I think he has four teeth that need to be removed, a few that are abscessed, and several that need crowns. One one of his c-spin xrays taken back in January, I did notice he has a couple adult teeth that haven't yet erupted, so hopefully this damage to his baby teeth hasn't affected his adult teeth too severely. Also, his front lower gums are SO swollen! We just are not able to brush his teeth well right now (or since we got him home almost 3 months ago) because the cementum  is exposed making the teeth too sensitive to brush. We sure try, but it is so hard to watch him wince in pain. We know that if he winces, it's bad enough that one of us would be going through the roof. Axel has learned from his years in an institution that complaining won't get him help, so he doesn't. Oh I feel so horrible for him!

Oh, is poor little mouth is going to be miserable tomorrow! But in a few days, he's going to be feeling SO much better, and will no longer be in pain. That means he'll also be able to eat without having to be so very careful where all the food is in his mouth!

Once the dental work is done (or maybe before? I forget!) they're going to take him back to the the CT scan that we weren't able to get last week. The CT scan is needed for the spine surgeon at Shriner's, so he can see all the veinous and arterial structures in his neck prior to surgery, just to make sure there are no surprises when it's time to do his spinal fusion in May.

Tomorrow is a big day. Please pray for peace for Axel, and a very quick healing of his mouth. If you could say a prayer for the mama too, I would sure appreciate it.

A Post By Axel: The Dentist

Yesterday Mama and I picked Angela up early from school and brought her to a little building. There were people there, and the were putting things in Angela's mouth! Angela has shiny things on her teeth, and the lady put more of them on. Poor Angela! I was very worried about her, but I was more worried that someone would put ME on that chair! I didn't talk to ANYONE there, and I didn't look at anyone either. As long as I couldn't see them, I was safe. I was very relieved when Mama said we were going home. Angela seemed fine though. I patted her on the back when she was done, just to make sure she knew I was worried about her.

Today Mama and I took Angela to that place called school, then we went home to play, just like we do every day that Angela goes there. Usually I have to wait all day for Angela to come home again. One day I saw her get off a giant yellow vehicle. Mama says it's called a "bus".

But today was different. We were only home long enough for one Signing time video, and I jumped on the jumper thing, and played counting on the iPad. Mama showed me pictures on the computer. There was a man looking in a boy's mouth, and putting things in just like the lady did to Angela yesterday. Mama said he is called "dentist". She showed me the sign for "dentist". The boy in the pictures was smiling. Then Mama said wit her hands, "Axel, get your shoes on. We're going to the dentist." I don't know what that means, but then she signed "Angela" so I knew I was going to see my sister again! I love seeing my sister.

We went into Angela's school and said hello to everyone while Mama did something with papers. When we got back in the car Mama said, "Axel, now we're going to the Dentist." I knew she was talking about me, because she signed, "Axel", and "Dentist" again. "Dentist" puts things in the boys mouth. I felt worried, but I wasn't sure why.

When we got to the big building, Angela showed me to push a button for "up". Mama and Angela both signed "up".

We went into the little room, and Mama said, "Push 4", but I like pushing LOTS of buttons, and which one is "4"? Mama helped me find "4".

Angela sat in the big chair, then a woman came and put things in Angela's mouth. Angela never stopped talking the whole time, and she didn't seem very worried. Mama brought me to the other side of the chair so I could watch. Mama signed some things with her hands, but the only signs I knew were "Angela finished, Axel turn" then she pointed at the chair. I felt VERY worried now!

A man came. Mama signed "dentist" again, then the man looked in Angela's mouth. Angela looked happy to see him, and called him, "King".

Soon Angela was all done, and she got to take a toy out of a small box. Mama said this was a "prize".

Then Mama said the worst thing! "Axel, your turn." and told me to sit....in...that...chair!

I didn't want to let go of Mama, but she signed, "Big boy" and "Good boy", then "Prize". Prize is when Angela got to get a toy out of that box. I patted the chair and smiled at Mama.

Mama helped me climb in the big chair. It wasn't so bad!



Then a lady came and gave me a toothbrush. I LOVE toothbrushes! They feel good on my tongue, but not other parts of my mouth. Then she gave me a little mirror to look too. That was fun!




Then "King" came into the room. He smiled at me.


Mama signed, "Lay down". HUH?



and the chair started to move. I was SO SCARED! Chairs are NOT supposed to move! I grabbed onto Mama and held on for dear life!

Mama stopped taking pictures and held onto me. I was very scared. I sat on Mama's lap and hugged her. Then....then they started tipping me back. Oh, I was scared, but Mama was holding me, and smiling. She did not look worried. Angela did not look worried. My head rested on King's knees. Mama said, "Aaaahhh" which is what we do when we brush our teeth. I opened my mouth a little and King put that little mirror and my new toothbrush into my mouth. He started saying numbers and letters, and big words like, "Abscess" and "crown" while he counted.

I saw Mama get a tear on her cheek.

Then Mama signed, "All done!" and handed me the box that is "prize". The lady told me I could take two!

When we got back to the chairs Mama wrote on lots of papers. Later we called Papa on the phone, and Mama said words like, "Surgery" and "anesthesia" and "xrays" and "heart".

I have no idea what she was talking about, but I know Papa was on the phone.

Tonight at dinner Mama said, "Tomorrow doctor" and something about Papa too. I hope nobody is going to look in my mouth again.

**Note from Mom**
Axel has four abscessed teeth that the dentist was able to see, along with one questionable front tooth. He can see many cavities, but all that is only a cursory look before Axel went into full-out panic. All of the damaged teeth he saw so far are permanent teeth so when he has surgery soon, he'll also have spacers put in (kind of like a bridge) to keep his good teeth from moving around too much. The dentist said there is NO WAY Axel is not in pain, and yet he's never shown us any indication of pain, which just tells us he's been living this way for a very long time.

Tomorrow we got to the International Adoption Clinic, where he'll be seeing several specialists. He'll also have his AAI screening done, and we'll get referrals to cardiology and ophthalmology so we can get in sooner than if I scheduled them myself. He'll also have an OT assessment, and then a LOT of blood drawn! Thankfully, Dean is going along.

About Those Teeth

I think I mentioned on my other blog that Axel's teeth are a mess, which is putting it gently. Thankfully he'll be going the the dentist the first week of January. (Please pray his insurance is in place by then! There was a small glitch in paperwork.)

When I first got custody of Axel, he LOVED the vibrating/spinning toothbrush, but I couldn't really get in there to actually see the condition of his teeth. By about the 3rd or 4th day I could see that what I thought were missing teeth in front were actually teeth that had broken off. I still can't brush his teeth very effectively, but I can at least get into his mouth. Although he does not not act like he's in any pain, when I brush his teeth his mouth bleeds like I've severed an artery. But I understand the pain tolerance thing, because Angela is the same way. Her neurologist says that kids with DS are lacking pain receptors, given them a very high pain tolerance.

Tonight we were playing a game of "open wide!", and I used the camera to show him what it looks like when he does. He thought this was lots of fun, and I realized I could get some good pictures of his teeth! (sorry, these were taken before he brushed his teeth for the night.) Remember you can click on any pictures to make them bigger.

First, we got a cute smile. Not quite "open wide" though.

then he helped me out a little bit. Check out the tooth on the bottom left.

Check out the rotten bottom left tooth and major gum deterioration on the bottom right.

His top teeth are the worst, as far as I can see at this point. Where the teeth are missing, there are actually pieces of the old broken tooth still stuck in the gums. You can see that the next tooth back on both sides is broken off and completely rotted. Who knows what the tooth behind that looks like.

I can't see to the back of his mouth to see what he has for permanent molars. I don't think he's gotten his 12 year molars in yet. Most kids get them around 10 or so, but kids with DS often get them late. Angela didn't get hers until she was 13.

I know of a couple kids who've come from Eastern Europe and came home needing some, or all of their teeth pulled, but they've been baby teeth. I don't know what happens when they have to remove permanent teeth this young. Do they put implants in? Does anyone know???

Dean and I have said several times, Axel is our warm up as far as adopting older children go. We know that Ianna's teeth are going to be in MUCH worse condition.

What I don't get is why these kids are not provided with basic preventative dental care. Axel had been in a foster home for 2 1/2 years, and I know the family took good care of him. I think most of this damage was done before he was moved to the foster home, while he was still in the institution. And, maybe the dental care just wasn't made available to foster family to access for him. Whatever the reason, it's going to be awful oral surgery for him. So unfair to have to put a child through that.

Snaggle tooth

See the tooth to YOUR right?  (the left side of her face) The one that's kind of sticking out funny? Yeah, while I was in Serbia/Bulgaria the new tooth came in. Except that, as is common for kids with Down syndrome, and has happened with almost every one of Angela's baby teeth, it didn't fall out, just pushed out. Except that she had braces on, so it pushed her braces out of line, messing up everything ELSE! UGH!

We're walking out the door now to go have that tooth pulled. This is the last of her baby too that's allowed to fall out. There are 5 others that are missing adult teeth behind them. Because they're all together in one spot (three on top, two on the bottom) if they fall out we'll have to put implants in because she'd loose bone. So, we're hoping they stay at least a few more years, but that's kind of wishful thinking.

Update on the choppers

Angela had her twice yearly dentist visit today. Here's the run-down.

Right side, top of the mouth:
Where Angela recently lost a tooth, and there's no new one visible behind it, there IS on xray, but it's very high up and only the very tip is visible on xray. The dentist said it looks malformed and will likely have to be pulled based on the way it's coming it. However, it's so high up it's going to be a long time before/if it ever comes in.

Right side bottom:
She has one baby molar she hasn't lost yet that does have a new one right behind it. He's surprised it's not loose yet, and that one may have to be pulled so the new one comes in straight.

She has one 12 year molar just coming in, but there isn't any room for it.

Left side top:
Everything looks great! One molar with no adult tooth behind it, but baby tooth is still good and firm.

Left side bottom:
no 12 year molar visible or on xray.
Two baby molars with no adult teeth behind them. So that's 3 teeth together with no baby teeth behind them. They're not very stable, which is probably why she doesn't chew on that side. He said once those teeth become loose we'll put implants in to prevent her bone from breaking down.

No cavities, but serious risk of gum disease because her brushing isn't very good. (thanks to those pesky poor fine motor skills.) Dentist told her "You can brush in the morning, but Mom gets to brush at night." Then he put her on a trickle file where about once a month he'll call and leave a message for her stating the same.