Random pictures

Here are some pictures from the last couple of weeks. I still have some on my phone I need to upload that show Axel's new brace, which is much more comfortable than the one he's wearing in these pictures.

Axel can make a cervical spine brace look cool!

It's even better when you have a cool sister! (she wants her own brace! LOL)

Waiting for Papa to come home. ALWAYS waiting for Papa. He's the favorite.

Zurri...need a haircut maybe?

Yep! Time to turn the kitchen into a grooming station! Her haircut was only *slightly* better than Axel's.

Hope In One Hemisphere

The community of parents who have children with special needs is a tight one. We band together and support one another through the trials and tribulations that are part of raising our children; both with and without special needs.

As parents of children who have special needs, sometimes we're faced with some very difficult decisions. Being supported by our community of parents walking the same path is something I can't even put a value to. When it's something rare you're dealing with, that support is even more precious.  Here's a video that describes just that kind of support all of us parents need from our community. These are families who have had to make the same incredibly difficult decision. They did the only thing they could to save their children.

Hope In One Hemisphere from Julie & Jack Epsteen on Vimeo.

Our weeks ahead

What's up the next couple of weeks? Let's see....

Angela does not have school tomorrow due to the holiday. Well, even if she did it would probably be canceled since we're in the middle of a blizzard here. Funny, although there have been 60-some inches of snow here so far this year, there has only been one school closing in our district due to weather this year.

Thursday Axel has a CT scan with contrast. (read, getting an IV and this is NOT gonna go over well!) This is so Axel's surgeon in Philadelphia can see how much bone he's going to have to work with as he plans for Axel's surgery. The more bone there is, the better! When kids are little their vertebrae still have a lot of cartilage, which is why the AAI screening x-rays should not be done before age 3. When kids are little and need spinal fusion due to AAI, they usually need bone taken from their hip to help support the screws and other hardware, and to encourage bone growth to stabilize the neck. Because Axel is older, he will hopefully have more bone to work with and NOT need any of his hip bone taken. The other parents I've talked to who's kid have had fusions done say the hip was the more difficult part of recovery for their kids.

On March 2nd Angela has an appointment with the pediatric ophthalmologist. Just a check up so we can order new glasses. Axel will be very jealous since I had to take away his play glasses due to unnecessary roughness. LOL

On March 3rd I'm having surgery to have new tubes placed in my ears. Usually for adults they can do it right in the office. Due to other issues they have to put me out like they do for little kids. Hey, any excuse for a NAP, right? It's a nice quick procedure, and the last time I was driving myself home by noon. (shhhh don't tell anyone that part! I was supposed to have a "responsible adult" with me, and I did...only he was not able to drive me home.)

Somewhere in there we hope to have Axel's oral surgery done. Just waiting to hear from the pediatric dentist. Once that's done we can schedule his spinal fusion! I'm guessing there will be a surprise dr. visit or something along the way as well! LOL

MRI pictures

Here are pictures from Axel's MRI done a couple weeks ago. I put an arrow to the problem areas. It is important to remember when looking at these that Axel did not have one single symptom!!!! As his surgeon put it, he was "one bad cough away from catastrophic injury".

First, here is a picture of a normal Cervical Spine MRI. You can see how the spinal cord maintains it's shape up the entire spinal column, and there is a pretty equal amount of spinal fluid around it all the way up the length as well.

This first picture shows a couple of things. First, the arrow points to where the C1 vertebra is pushing against the spinal cord. Also, you can see on the front (left) side of the cord, between the C2 and C3 vertebrae, the disk looks different that the disks between the other vertebrae. That's because it doesn't have enough fluid in it to provide a cushion between the two vertebrae.

This pictures shows the Cerebrospinal Fluid (CSF) that surrounds the spinal cord. It is the white area around the cord. You can see where the arrow is how the CSF fluid is being blocked from getting to the brain. Thankfully it can also get to the brain on the back side of the spinal cord as well. Also, the spinal cord itself is more narrow in that area because of the movement of the C1 vertebrae.

Gesundheit

There are big things coming. Very big things. Go read through this website. God is amazing. That's all, just amazing. Soon I'll be able to share more. God has brought together a group of people who otherwise would not know the other existed. Only God can orchestrate things like this. ONLY GOD.

Decisions made

The title of this post makes it sound like we had a choice as to weather or not Axel needed surgery. We knew going into this, when we first found out a few weeks ago, that there would be no choice. Axel needs surgery...soon...to repair the instability in his neck.

Dr. Samdani showed me from the MRI we had done a couple weeks ago where the problem is. (and I had seen it myself, since I downloaded the program so I could look at the scans myself. LOL Those who know me will not be surprised by that.) There is an area where the C1 vertebrae is pressing against the cord, interfering with the Cerebrospinal fluid (CSF) That means the CSF in the brain is low as well. It's unusual that Axel hasn't complained of headaches at all...that we know of since how would he tell us?

The biggest question is what do we do with his TEETH? 

Dr. Samdani, the surgeon, confirmed what I was thinking. They do NOT want ANY type of infection in his body when they do this surgery since it would put his brain and spinal cord and  at risk.

We need to get his dental work done as soon as possible, using fiberoptic intubation (I didn't know there was such a thing!) Surgery to have his spine fused can be done 4 weeks later. So, the very soonest we'll be looking at doing his spinal fusion is the end of March.

There is  GOOD NEWS too! When the little kids have this done, they usually have a piece of bone taken from the hip, which is used to screw everything together since there isn't enough bone otherwise. Because Axel is older and has more bone, they will probably be able to use synthetic bone replacement (I can't remember the name of it) which makes for a faster recovery. 

Also, with little kids they are usually in a traditional halo with pins in their head for 6 months.  This is because they don't have enough bone to support all the screws and hardware. Because Axel is older and has more bone, he will probably not need a traditional pinned halo. The doctor said he won't know for sure until he gets into surgery and can actually see the bones for himself. So, Axel will come out of surgery either in a traditional pinned halo, a non-invasive halo (it is MUCH more comfortable for the child, and doesn't leave the scar from pins, but is more of a pain to care for the child because you can't even wash their hair.) or...the best possibility...just a neck brace! 

If he has to have the traditional halo, it will only be for a few weeks and then he'll be switched to a non-invasive halo or brace which will stay on for 6 months. 

Oh, and Axel got a new brace today which looks much more comfortable for him. 

So to wrap it all up:

1) Get dental surgery done at home using fiber optic intubation.

2) Do neck surgery in Philadelphia.

3) intensive care for 2-5 days after surgery, then in a regular room for several more days. "Home" to the hotel for about a week before returning home to Minnesota. 

Now, we're going to go find some dinner, and try to get rid of the migraine I have. Please pray tomorrow's flight home is uneventful. My migraines usually last 3 days, plus the ear trouble I have flying. Oh....Please Lord, work a miracle on my head!

well crud

Ok...see...when I leave town there is a lot to think about. Either it's because I'm getting a new child and am trying not to jump out of my skin with excitement, or because we have big decisions ahead of us and I'm worried. Add to it the fact I have the mom job...packing for the kid coming along, all the paperwork that has to go with us (almost as much as for the adoption!) and thinking about the other kid's stuff too. The one who's staying behind, and trying to make things as easy as possible for Dean.

So is it any surprise I forgot to bring pajamas for me?

Anyone who knows me knows that all the reasons listed above have NOTHING to do with the fact I forgot my pj's.

We are here!

WE arrived safely and without any unusual events. Axel enjoyed the flight, particularly the take-off and landing. ;-)

When we left Serbia it was snowing and cloud, and the de-icing stuff covered the window so he couldn't see out. He really had no idea we'd left the ground. Today he enjoyed the pretzels, and the pop, and the iPad while Mama dozed off and on. He was a little worried about the tears running down my face during the plane's decent.

Let's just say as soon as I know when Axel's surgery is, I'm scheduling to have MY surgery for my ear tubes to be re-done. The last 45 minutes of a flight is excruciating. And I still can't hear well.

My friend Colleen and her son Nolan picked us up from the airport, and we were able to enjoy dinner together! What fun to get to know someone I've known online for years! We  met on downsyn, my internet "home" for the past 5 years or so.

We're all checked into the Ronald McDonald house, and have Skyped with Papa and Angela. Tomorrow's appointment with the surgeon is at 1:00 (12:00 pm at home) and you KNOW I'll be updating after that!

Thanks for your prayers everyone.

Headed Out

Ok, I think I have all the documents I need for this trip, stuff to keep Axel (and me) busy on the the plane. Laundry done so if Dean and Angela have to join us out in Philly he can easily pack a bag for them.

Next post from Philadelphia. Oh, I'm so anxious to get this visit done!

Oooh falling behind

Well, I am over 300 votes behind the leader in the Reader's Choice awards. That is a long way. I haven't had a chance to look at that blog yet, it must be a popular one.

So come'on out and vote everyone! You can ready the write up about my blog here.

Trouble in the bedroom and the plane

I have a terrible time flying because of eustachian tube dysfunction. I have trouble with this when I'm standing on solid ground, much less in the air on a plane.  I can tell you when the plane I'm in is descending LONG before most people can feel it because my ears suddenly feel like someone is jamming ice picks into them.

No really. Ice picks.

Once on the ground again it takes anywhere from several hours to 6 weeks for my hearing to return to normal, during which time my ears hurt constantly. It is not fun. And yes, I'm whining.

Last spring, just one week before I went to Serbia and Bulgaria, it occurred to me I was going to be on 8 flights in a matter of 2 weeks. I knew I was going to be absolutely miserable if I didn't do something! I went into my ENT. Having explained the problem over the phone he scheduled me for the end of the day so he could put tubes in my ears right there in the office. They do that with grown ups. LOL No need to knock out big people who can sit still while their ear drum is sliced open an a small appliance stuck through it.

The doctor numbed me up in various places with sprays, and stuck cameras in several orifices, and told me what I already knew. My eustachian tubes were closed. Clearly I needed tubes, but there was a problem. Because I have Menieres disease, using novocain on my ear drums would also affect my inner ear, causing me to have a Meneires episode, rendering me unable to stand up, much less drive home! I would need to have it done under general anesthesia just like the kids do. And by the way, did I know my septum was severely deviated?

"What are you doing tomorrow morning? If you can get someone to drive you home, I can squeeze you into my surgery schedule tomorrow morning."

And so, I had the tubes put in, and a week later, when my first of many flights touched ground and I was pain free, I was ready to sign up to be a flight attendant. Flying was suddenly FUN!!! Over the next 9 months I was on 16 flights without a single problem.

So, about two weeks ago I started having a lot of ear pain and I just knew my tubes had fallen out. Lets see...how many flights will I be taking over the next several months? TOO MANY TO COUNT! There is back and forth to Philly many times, plus a couple other trips that are in the works that require several flights each. Today I went into my ENT again who confirmed that my tubes were indeed out, and he put me under the microscope to get them out of my ears. (Axel was pretty intrigued watching this process! I'm pretty sure he was glad it wasn't him for once. LOL) We discussed my upcoming flights. He said right now my eustachian tubes look good, so I might just be ok. If I have problems with the flights this week I can call and schedule surgery over the phone and he'll get me in as soon as possible, hopefully before I have to fly again.

Then I told him about the bedroom problems. The one where Dean says, "What is WRONG with you? You're snoring so loud I can't sleep at all." Funny, because he was always been the snorer. Funny.  I haven't heard him snore in ages. I wondered what he'd secretly done to solve the problem? It never occurred to me I wasn't hearing him because I was snoring myself! Perhaps my own snoring is causing such severe sleep deprivation that would account for the fact I'm asleep before I close my eyes sometimes.

My doctor responded with "I can't believe you haven't had more problems before now. Your septum is severely deviated. You're not moving any air AT ALL on that side."

Well, I HAVE been having problems with my breathing for years. I just didn't bother to do anything about it. That was before I understood the secret benefits of a nose job. LOL I've had previous sleep studies with NO snoring at all, nor any apnea episodes, but I'll need to have another one done.

The doctor gave me some spray that, when used in the office, seemed to help me breath better for...oh... about 15 minutes. I'm to try that for a couple of weeks and if there are still complaints from Dean I can go back and see about  a more permanent fix.

For now, if Axel ends up in a shared hospital room, and I have to sleep in there with him, I'm apologizing in advance to the other people in the room. And the nurses. And anyone else I might have forgotten about.

When he hurts

Axel is in pain tonight.

At least we think he is. We really don't know.

He has no way to tell us. He doesn't cry. He doesn't complain or point.

Tonight, and a couple nights in the past week, he's seemed depressed. He didn't eat much dinner tonight...or lunch for that matter. He is just here with us, watching t.v. sober faced and occasionally makes kind of a sucking motion with his mouth.

I'm pretty sure it's his mouth that hurts, and he must be miserable. We can't even fix it for him because of his neck. (for those who are new here, Axel came home with several broken and abscessed teeth and needs a lot of oral surgery to repair his mouth.) My poor baby. No child deserves to be in pain like this. I can't think of anything worse than mouth or other pain in your head.

Please pray we can keep Axel as pain free as possible while we get this all sorted out. For now I'm going to get some Tylenol into him and hope that helps.

It's that time of year

Tax preparation time, that is! I have mine all done, just have to wait for the Adoption Tax Credit form to get done. I heard it was out but it's not showing up in TaxCut yet. (it said it wouldn't be ready until Tuesday if I remember correctly)

Dean still has to do his taxes. Last year I *think* he had them done by midnight on April 15th. LOL

Thank you

I'd just like to thank everyone who has posted Axel's button on their blogs. The closer our visit to Shriner's gets, the more nervous I become. Reading the report from his MRI certainly doesn't help. (although looking up the meanings of all the big medical terms certainly gave me something to do!)

Axel seems to actually LIKE his neck brace, and is more than willing to put it back on after a bath or eating. This makes me think that he feels safer with it on, and clearly is comfortable. He still has just enough movement in this brace to worry me.  I'm hoping when we get to Shriner's he'll get a different brace.

Really, we can't get to Shriner's soon enough. I just want it done and over with. I don't even want to take Axel out in public right now for fear he will get bumped into or jostled. As it is he ran into one of the dogs the other day and got knocked over (they collided coming around a corner) and I about had a nervous breakdown right there on the spot. He wasn't hurt at all (that I could tell) and was more worried about why I jumped so quick to help him up, but then when I got to him decided I should let him get up on his own...like I would an accident victim. I really didn't know what to do.

Checking on him at night, and seeing how he sleeps is no less worrisome. Even with his neck brace on he manages to contort himself into positions I can't imagine to be comfortable.

My prayers for now are that 1) we can keep him safe until he has surgery 2) that Thursday just hurries up and gets here already and 3) that he has surgery as soon as possible. The sooner the surgery, the sooner we can stop worrying every any time he's on his feet....or asleep....or eating....or in the car....Oh the car scares me to death. What if someone rear ends us or smucks us? Oh...that would be horrible for Axel. 4) that we can get everything arranged at home to keep the ship afloat!

Thank you again for praying for our little prince!

Don't forget

To vote, that is. GO HERE to vote for my blog in the Reader's Choice Blog category.

News in Ukraine

There is an interesting article that has appeared in the Kyiv post. Oh, I'm sure this will make some waves over there where orphans are concerned. I PRAY it makes some waves. Change doesn't happen from still, calm waters.

Who Knew?

When I was a kid, a staple food was rice with warm milk, sugar and cinnamon. Mmmm Just the thought of that stuff makes me hungry! When Mom and Dad weren't going to be home in time for dinner, it was a toss up which one I'd have, cereal or rice.

A couple weeks ago I was cruising through Target for nothing in particular, just a place to get Axel out of the house for a bit. Those are the most dangerous trips, really. My word I can spend more money there on absolutely nothing that I've suddenly decided I need.

So there we were at Target when I stumble upon this thing

Do you know what it is? I didn't. I had no clue, but it looked like a gadget I would be interested in, so I picked up the box and read it.

A rice cooker/steamer thingy!

Says it cooks rice (the real stuff, not minute rice!) in a matter of minutes. AND AND AND you can put the top tray on and steam veggies or meat in the top, essentially cooking an ENTIRE meal at one time. Seriously, it showed an entire meal in there on the box! All.in.one.container!

This is a device designed just for me! I had no idea such a thing existed, but that's really no surprise since I usually avoid the kitchen at all costs. (my adult kids and Dean can tell you why they're glad I do.)  I quickly went from kitchen gadgets isle to the grocery area and picked up rice. Lots of rice. I was going to relive my childhood.

As I drove home with this treasure in the car, all I could think of was rice with warm milk, sugar and cinnamon. Axel and I carried our things into the house and I opened the box, popped the thing on the counter and put it all together. It looked like a mystery...hmmm...ok fine I'll read the instructions. This thing is SO SIMPLE to use. I know, because I can use it.

Fifteen minutes later Axel and I were enjoying a heavenly snack, and my tummy was happy. Axel seemed to like it too! Not too long later Dean came home, saw what we were having and he dove in too. Then called his twin brother and said, "Guess what I'm having!" because apparently this was a snack the two of them had shared a lot when they were growing up.

Life is good now. I can live off rice and cereal, I'm pretty sure. I'll probably gain 30 pounds and develop problems with my blood sugar, but my tummy will be happy.

Oh, and the full meal thing? Yeah, I haven't tried that yet. Why? Who needs anything besides rice?

Product Review: Bed Alarm

I didn't really want to put "bedwetting alarm" in the post title, but that's what I'm talking about here. Just so you know.

A lot of parents who have kids with Down syndrome or other special needs struggle with the issue of night time potty training. When is the child ready? How come he can be dry for 2 or 3 nights and then is wet for like 20? What's the KEY?? Keep in mind it is perfectly normal for kids to still be in night-time diapers at age 4 or 5. Usually be age 6 most kids have reached night-time continence.

This was a problem for Angela for several years until, at the suggestion of a friend, we tried the Rodger Wireless Bedwetting Alarm Systme.. According to the reviews by parents on the website, most kids were done with the alarm by around day (or night) 10. I found this to be true with Angela, although about 18 months later we had to use it again for just a couple of nights.

Fast forward two years to Axel joining our family.

Axel's foster mom had told me he was nowhere near ready for night-time training, and woke up wet almost every morning. I was really glad I'd brought a package of pull-ups along with me! His foster mom was right. The first 3 mornings he woke up soaking wet.

And then he woke up dry for the next 12.

A miracle? I don't think so. I think it had more to do with the fact I was following a strict routine, which just happened to NOT include drinking Coke right before bed. ;-)

We came home on day 16, and he woke up dry his first morning home which kind of surprised me. You know, being exhausted after 27 hours awake. In fact, he had three dry mornings and then it stopped. He was wet EVERY morning. We went through a month's worth of pull-ups and I told him (using crazy gestures and lots of pantomime since he didn't understand English) that when that pack of pull-ups was gone, there would be no more.

That was all good in theory but didn't work at all, probably because he did not understand what I was talking about. The first morning he woke up with every piece of bedding soaked. When I pointed out the bed was wet, along with his pajamas, he looked at me like, "Who peed in MY bed?" and was quite offended.

After 3 or 4 mornings of washing bedding, I was done. I mean, around here the bedding is usually the last laundry to get washed, and doing all this bedding was interfering with getting the other laundry done. I had a soaker pad and on the bed too, but Axel practically swims in his sleep and covers every inch of the bed so the soaker pad really didn't serve it's purpose.

I knew from our stay in Serbia that Axel was perfectly capable of keeping his bed dry all night. I decided it was time to try the alarm.

The Rodger Wireless Bedwetting Alarm consists of three pieces: The receiver that plugs into the wall, the "magic underwear", and the transmitter that plugs into them. (While there is a battery in the transmitter, there is no actual electricity hooked to your child.) The system comes with two pairs of the underwear. You will want to order a few more pairs! (6 is a good number.)

How it works: The receiver is plugged into the wall, and you set the alarm for whatever sound you want, and the volume you want it to be at. It's important that it be loud enough to wake the child AND THE PARENT, because the parent needs to participate in the middle of the night discussions. The child puts on the magic underwear, which has wires sewn into them, then the transmitter is snapped to the underwear. These wires are very sensitive to moisture, and when the child pees even a tiny bit the transmitter tells the receiver to sound the alarm! The purpose of the alarm is to interrupt the thought process the brain is going through so the child tunes into his body and is aware he needs to either get up to pee or control his bladder.

The first night I showed Axel the alarm, we went through the motions of what to do when he hears the alarm. I had him pretend to be asleep in bed then I hit the alarm button. Per the company's instructions, I taught him to get out of bed, turn on the light, turn off the alarm, go into the bathroom and sit down on the toilet to pee. (even if he'd just emptied his entire bladder in bed!) We practiced this routine about 15 times and I know for a fact Axel thought I'd lost my mind. As soon as he'd sit on the toilet I'd say, "Yay! Ok, pull up your pajamas, let's do it again!" We even did the routine with the light off. I wanted him to be independent with these steps so that HE could take responsibility for the problem, which is an important part of the process.

The first night the alarm went off around 1:30 a.m. I went into Axel's room and he was still sound asleep with the alarm BLARING just 2 feet from his head. I woke him up and said, "Axel, the alarm is going. Look, you peed your bed. Get up and turn on the light...Now turn off the alarm." etc. and walked him through the steps again. I could see the wheels turning in his head. "Didn't we do all this last night? So THATS what all the nonsense was about!"

We got his clothes and bedding changed, and he went back to bed, putting on a clean pair of magic underwear. We talked alot about the "wet" bed, and the "dry" pajamas he changed into and the "dry" sheets on the bed. (here's a tip, put layers on the bed! If you use soaker pads, put a sheet with pad on top, then another sheet with pad on top, so you can just strip the top layer and not have to remake the whole bed in the middle of the night.)

The second night the alarm went off around midnight, and I waited to see what he would do. I still had to wake him up to go through the steps. All the while talking about "wet", "clean" and "dry".

Nights 3 and 4 he woke up on his own, going through all the steps. I went in when it was time for the new "clean" and "dry" pajamas and bedding.

Night 5 the alarm went off but his bed wasn't wet! Only the underwear! WOOT WOOT!

Night 6 the alarm went off and his underwear weren't even wet enough to change them. Just a dribble! Oh, this was PROGRESS!!! He had stopped peeing as soon as he heard the alarm.

That was the last night the alarm went off. We're now on day 12. That's six nights of uninterrupted sleep and clean bedding! WOOT WOOT!!! Axel will wear the alarm until he's been dry for 10 nights IN A ROW, and then we'll put it away.

We have used this alarm with two kids, and I highly recommend it. It has worked for both of them by night 10. While it's on the expensive side, it was well worth the expense to be done with the expensive pull-ups and washing of bedding! The Bedwetting Store has several different types of alarms available (including a vibrating watch that we used for Angela at school a couple years ago. Worked great!) allowing you to choose one you think will work best for your child.

Here's to dry beds!

Star Sighting

Yesterday we had an unexpected visitor. She has recently starred in hits such as "High School Musical", I, II and III, "The Sandlot" and "Sandlot II", along with many others! In fact, I was forced to attend every audition and rehearsal, and listen to all the songs as she learned them. I even attended EVERY performance! And yes...they all took place in my basement. I got some candid shots of this star as she breezed through yesterday.

To All My Philly Peeps

Axel and I will be in Philly next week. We'll arrive late afternoon on the 16th and have that evening open, clinic on Thursday the 17th, then Thursday evening will be open for socializing as well. We are scheduled to fly home on Friday morning, but that is subject to change.

We would love to meet up with some of you! I don't know the area at all, of course, and I'm still waiting to figure out where we're staying. (trying to get a room at Ronald McDonald house since it's nice and close...and cheap.) A couple people have offered to let us stay with them I just don't know how close anyone is to Shriner Children's Hospital. I prefer to be close where I don't have to worry about traffic.

When Axel has his surgery Dean and Angela will be coming out as well, and Dean and I will take turns in the ICU. I think. I really don't know WHAT we're doing and am working on plans B, C and D. LOL