Moving Up

Today is Angela's very last day as an 8th grader. Today is the 8th grade field trip, which she has waited three full years to be able to attend, and I have heard about it at least 4 days a week since she started 6th grade!

The staff at Angela's school has been amazing! It's going to be tough to say goodbye to them. Each and every one of them holds a special place in Angela's heart, and they know it by the hugs I'm sure they will get from her today.

My girl is growing up! When she gets off the bus today, she will officially be a high school Freshman! I am SO proud of her, and how far she's come in the last three years.

Six Months Today

Six months ago, I dressed this little boy in very special clothes. It was the day of our adoption ceremony to finalize our adoption! While he really liked his new clothes, he was a little confused as to why this woman who didn't know how to talk right ,was hiding behind the camera wiping tears off her cheeks. This woman who called herself Mama.

Six months ago today, I signed the papers that said, from this day forward, Axel Djordje Spring would forever be my son. Forever. My son.

At the Social Center in Kragujevac, Serbia, Axel stood before a crowd of people who cheered for him. Excited that he had found a forever family. That he was going to America, where his future has no limits. Where he could go to school, make friends, and reach his full potential. In a family. OUR family.

He delighted in everything he saw. He didn't understand the long car ride to the big city, nor the significance of that event. He only knew that things had changed. Some people were gone, and now there was this new woman, and we were living in a beautiful apartment. This must be home!

It was a busy week, chasing papers around the city of Belgrade. A few days later I woke him up at 3:30 a.m to drive to the airport. I watched this video today for the first time since coming home. Axel is SO different now. Clearly not the same little boy.


After being AWAKE for 30+ hours, Axel came through the doors at the Minneapolis/St Paul International Airport where he met his Papa and Angela for the first time.


Our lives are so different now. We had fun before Axel joined us, but now Angela has a partner in crime!

Angela takes VERY good care of her little brother, and is proud of the fact she is the "big sister". She waited a long time for this! She loves to make lunch for him....

Or teach him new things, like how to shovel snow...

Or how to brush hair without pulling...

And how to bake cookies!

She really loves her little brother.

She felt terrible for him when he got his neck brace. (even though she secretly wanted one for herself!)

She makes sure he has everything she does, like sunglasses.

Axel has had so many "firsts" since coming home. Every day we get to see the pure joy that explodes out of him!

We were all worried sick for him when he had his spinal fusion done just 3 1/2 weeks ago. 

He was treated like the Serbian prince that he is. Royalty who our family is allowed to rub shoulders with.

So even though we have to deal with this little speed bump in life, we know it will give us many more years with Axel. Years that we get to wake up to this smiling, handsome young man. No longer the shy little boy I met in Serbia. Instead a confident, smart, capable young man who has the world at his finger tips.

Hypnopompic and Hypnagogic Hallucinations

Hypnagogic imagery (-hallucinations) - Vivid sensory images occurring at sleep onset but particularly vivid with sleep-onset REM periods;�feature of narcoleptic REM naps.


You've probably done this at some dome during you're life. You're just about to fall asleep (but not quite "there") and you get a flash of a dream, either with or without sounds. But it's just a flash. You might hear a voice (often I get a voice that yells my name) or someone screaming, or a dog bark or something like that.  It might bring you bake to "awake" or you might keep going into real sleep.

These are called Hymnagogic hallucinations. I had forgotten there was a name for it. In the first two naps today I've had them. On the sleep study monitors it will show that I'm in stage 4 (REM) sleep, but I'm very much aware of what is going on, and feel like I'm kind of still awake. You might term this "just drifting off".  That's because only PART of my brain has gone to sleep, and another part is still trying to get there. (In re-reading this last sentence, it sounds an awful lot like I'm describing something else! But that's another post...ok an entirely different blog. One not written by me! LOL)

Hypnopompic hallucinations are just the opposite, happening as a person is waking up. This is when episodes of sleep paralysis happen, which can be really scary. Thankfully I haven't had an episode in years, at least not that I can remember.

Most people only have these episodes once in awhile. I have them every time I fall asleep. They're kind of annoying, really. Sometimes I think there is someone in the room with me. Sometimes it feels dangerous. Did you know there are people who are able to manipulate these sensations into lucid dreams, and actually control their dream state with them? Freaky!

Ok, two naps down, three more to go. The tech did say that based on my first two naps I will probably be here for all five. (Honey, that means I won't be home until around 9:00 tonight. Just in time for bed. LOL) Eventually I'll be done with this test and can get on to posting about other things. YAY!

What is Narcolepsy?

I guess I didn't snore as much as I do at home, because they never came in to make me put on the c-pap mask. I know I was awake a lot because I woke up every time I rolled over. Normally at home I close my eyes for the night, then the next thing I know it's morning and I'm still exhausted! Very symptomatic of two things: Sleep apnea and Narcolepsy.

Now for the naps! Because I have known narcolepsy, diagnosed during a similar test 12 years ago, I have to do a nap test. This is a series of five scheduled naps, taken every two hours, each one lasting half an hour.

Narcolepsy is a problem with the brains ability to regulate sleep cycles. It's common for people with Narcolepsy to skip sleep cycles, and also to have symptoms of Cataplexy and Sleep Paralysis. I've never had Cataplexy, but sleep paralysis is something that I had for years. (it's been several years since I've had  sleep paralysis.) Sleep Paralysis is VERY scary, and would cause me to be afraid to go back to sleep because you feel like you can't breath.

So my overnight study is done, and now it's time for the nap test.

The purpose of the nap test is to check your level of daytime sleepiness. So you wake up for the morning (I fell asleep around 10:30 last night and didn't wake up until 10:00 this morning!) and fill out a questionnaire about how you slept the night before (which they use to compare with the actual information gathered by all the wires and monitors you're hooked up to.) Then two hours later you take your first nap of the day. Most people, those not having sleep disorders like apnea or narcolepsy, will not sleep during this nap. *Some* might reach stage 1 or 2 of sleep, and it will probably take them 20 or so minutes to get there. Sorry though...the nap is only 30 minutes long. LOL You will take five of these naps, spaced two hours apart over the course of the day.

Then there is me. During my last sleep study 12 years ago, not only did I fall asleep within two minutes for EVERY nap, but I skipped stages 2-4 going from stage 1 (which is light sleep) to stage 5 (deep sleep) and stayed there until I was woken up 30 minutes later.  I did that for ALL FIVE naps, and then was also dozing off between naps.

I don't think my narcolepsy is as bad now as it was 12 years ago. I did sleep a little during this first nap, but it's different sleep. I have a dream state when I'm not yet in stage 4 or 5 where dreaming normally occurs. It is very strange, unless you have narcolepsy. ;-)

So I feel like I just woke up and am groggy, but I see that according to the clock, it will be nap time again in 40 minutes. Thats the thing with Narcolepsy. If you are sitting around with nothing to do, you get groggy. Getting up and being active helps, but the narcolepsy makes you have very low energy levels too. People with narcolepsy often do thing like "eat out of boredom" when what they're really doing is trying to stay awake. Needless to say, weight gain is a problem. People with Narcolepsy are often looked up as being lazy, or having no ambition. That's because sometimes it's all we can do to stay awake, much less get anything done. We can get our days and nights turned around VERY easily, and many people with Narcolepsy find they do better with overnight jobs than daytime jobs.

When I was first diagnosed 12 years ago, I was given Ritalin to help me stay awake. I hated the Ritalin, as it gave me HORRID headaches. (but very different from my migraines, which are also awful.) My doctor told me to stick with it just a little bit, because a new drug was coming out called Provigil. It was incredibly expensive when it came out and it took about a year on the market before my insurance would cover it.

The first time I took Provigil, it was like someone gave me speed. After three days I had gotten more done around the house than I had in 3 months. I'd also lost five lbs! What I was feeling is what you normal people feel. I was awake. At age 30, for the first time since I was around 15 years old, I knew what it felt like to be awake.

I took Provigil off and on for a few years. As my jobs changed so did my health insurance and sometimes it wasn't covered. Then I was without insurance for awhile, and my doctor said in order to continue getting my Provigil refilled I had to have a new sleep study done. That was about 4 years ago and I haven't had Provigil since.

And I'm sleepy. I'm sleepy driving, and any drive longer than 15 minutes poses a problem for me. Sitting in a waiting room is HORRIBLE, because I really struggle to stay awake. If I'm in a sleepy phase and I suddenly have to talk to someone on the phone or in person, they might notice my speech is slurred.

Last night when I was getting wired up, the tech was asking if I take any meds for my narcolepsy (you have to be off all sleep meds for the test) When I said I hadn't taken any in four or five years she told me that there are two new meds out that are even better than Provigil was, because they actually replace the chemical in the brain that is deficient. It sounds heavenly.

Being awake sounds  heavenly. Maybe I'd feel like exercising again.

But what about the sleep apnea? Unfortunately, I don't think this sleep study did what Dean hoped it would do, which is get me on a machine to stop my very loud and annoying snoring. Sorry Dean. :-(  My goal in getting this study done was just plain find out why I'm so flipping tired all the time. Yes, I have narcolepsy, but it had seemed a little better the past year or so, making me thing this problem was actually apnea related.

The tech informed me last night that narcolepsy does that. Seems "better" for a year or so, then gets suddenly worse.

Lovely.

I just want to be awake. I'll meet with the doctor tomorrow to find out what I can do to make that happen.

Where's Wal..I mean Leah?

Where am I now? Does this picture give you a good clue?

Yep, having a sleep study done. The last time I did one was about 12 years ago when I was diagnosed with Narcolepsy. But a few months ago, someone....ahem...started complaining that I'm snoring a lot. Maybe even enough for someone....ahem...to sleep on the couch occasionally. Between that, and the fact I'm even MORE sleepy than I normally am (which is a LOT thanks to Narcolepsy!) it was time to get restudied. 

I just finished trying out the different masks. OMG...the full mask makes me incredibly claustrophobic! Like I feel like I have to take a deep breath then put it on because I'm going underwater. It's horrible. The tech adjusted the settings a bit and it was a little better. I also tried two different nasal masks, and I liked one better than the other, and also better than the face mask. Still claustrophobic, but not as bad as with the face mask. We won't know if I need one of those until I have a certain number and type of apnea episodes, which there's a chance I may not, right? (I kinda doubt it!)

So here I am. Having a sleep study. Yay me!

Check it Out!

My friend Hope Anne and her husband are in the process of adopting their new daughter Katya. They have *just* returned from their first trip a couple days ago, and will be going back again in just a few days to bring Katya home!

Being a child with craniofacial malformations, Katya holds a special place in my heart, reminding me of a certain little girl in Serbia.

Hope Anne's family is trying to raise the very last bit of funds for the second trip and are selling some beautiful Ukrainian stuff! Go have a look HERE and HERE to see if there is anything you'd like to purchase to help bring Katya home.

Bug Love

Mama? Come show me the Bug Lady pictures. 

Ok. Careful Buddy, or you'll impale me with those bars!

Oh Axel, these are ishy bugs!

Mama, look! This is "bug". I love the bug pictures.

Oh, I love you Axel. Wait...hang on. You go this way...oops...there! A hug!

Mama, give me a kiss! 

Axel, it is hard to give you a kiss around the pins! 

Give me a REALLY BIG pucker and maybe we can both reach! Love you little buddy! Ouch.

About those Pins

Axel's halo pins are infected.

BLECH

On Friday I emailed pictures to his surgeon because the skin was starting to come away from one set. In fact, I sent pictures of some of the others as comparison because they looked great.

Operative word: LOOKED

By Sunday morning three sets of pins were looking horrible. One of the back sets, which is very difficult to see because of the hair and angle of the crown piece has a large ulceration just below it. Lovely. So I sent new pictures.

This morning a prescription for antibiotics was called in, and we start a new cleaning regimen. Years ago, about the time I started this blog, Angela spent an entire winter with an open wound on her belly that came from a reaction to gortex she had installed years prior. These wounds on Axel look very similar, like possibly he's reacting to the titanium the pins are made from.

Our old cleaning routine involved swabbing each of the pins with q-tips soaked in soapy water. Now it involves irrigating the wounds. This is no small feat when the vest ABSOLUTELY CANNOT GET WET...no matter what!!!! Also, irrigating involves hanging Axel's head off the end of a bed so the water can run directly into a tub. Fun. NOT! Axel doesn't really think so either.

I used to lay him the long way on the bed to wash his hair, then clean the pins when he was sitting in a dining room chair so I could see them as well as possible,  but to irrigate them...well I can't get to his pins with the bed turned that way so I need to rearrange his room a bit. In the meantime, he lays with his legs folded which, if you have  kid with DS, you know this is just a natural thing for them to do anyway! So here is all my materials set up.

And here is Axel hanging off the bed. It's hard to see in this picture, but  his head is all the way off the bed. This feels very scary to him, but the posts and hard vest are supporting his head completely, so while he feels like his head is suspended in air (well I suppose it is!) it's well supported.  I'll spare you from the grossness of posting pictures of infected pins.

First I wash his hair, allowing some of the water to run over the pins, loosening all the crusty stuff that has formed overnight. Next I take the q-tips and clean all that gunk off. After that I use syringes full of plain water to quirt into the holes around the pins, where the skin has pulled away, cleaning all the rotten gunk out of there so the skin can heal.

This is worse than when I had to clean Angela's wounds. It's all psychological I know. It's because the pins are going right into his skull for cripes sake, and that is really gross!

Open Letter to the Halo

Dear Halo,

How difficult it is to love and hate you all at once. how I hate what you've done to my child, how uncomfortable you've made him, the joy you have taken away from him. His ability to be a boy and enjoy his first summer in our family...gone. His body is sadly lacking in the bruises ands scrapes that come with being a boy.

How I loathe seeing you each morning Halo. Every morning as I sit Axel down to breakfast I'm reminded that there are pins to clean. Pins that are screwed into my child's skull, that today are infected and make him cry with each of the 50+ q-tips I will touch to them, only to repeat the process again before bed. I hate that you have brought my child pain and discomfort.

Halo, you have come to rule our lives. You have limited the fun the entire family can have. Being outside in 80+ degrees is supposed to be FUN. A time to splash in the sprinkler, or go to the beach. We'll be having none of that this year, thanks to you Halo. Motor cycle rides just aren't the same either, knowing we've had to leave one child behind. Ok, so he doesn't know what he's missing yet. Still YOU SUCK halo!

And yet, because of you, oh Halo, our boy will go on to live a rich and happy life. We won't have to jump every time he trips or stumbles. Next year, he'll be able to get bruised shins just like every other boy, all because of you.

So Halo, no matter how much I hate you and detest your presence in our lives, I will try to remember that it's because of you Axel will get to be a boy and experience everything there is in life.

Loving and hating  you,
~Leah~

The Girl...15...I'm stunned

I have no idea where the time has gone. 15 years ago I wanted to know what Angela was going to be like when she was grown up. Would she be able to live on her own? Would she ever learn to read? Would she have friends?

If you ask her, Angela IS all grown up already. A couple years ago she informed me, "Mom, I have bad news. I'm going to move far away, and you're not coming!"

I guess that answered one of my first questions! LOL At 15, I have a pretty good idea where Angela will be as an adult. If I were to base her living skills where she is right now, she'd be able to live with some assistance. Someone coming it to check on her a couple times per day to make sure she's taken her seizure meds and stuff like that, and someone to cook. But she's only 15, with several years left to learn the cooking skills she needs, and I'm confident she'll get there.

Would she learn to read? This was a more difficult skill for Angela to learn, mostly do to her incredibly short attention span. Angela is a pretty active young lady (and easily excitable!) so sitting still and concentrating wasn't something she was interested in. However, I'm happy to say that this year reading "clicked" for her. She's now reading for pleasure! She doesn't really care for books, but she LOVES teen magazines, and who needs any more information that what Justin Beeber's favorite food is? Certainly not Angela! LOL Yesterday she was reading my mail, and the day before that trying to read Axel's IEP, so I'm thinking my question about reading has been answered too!

Would she have friends? Angela has LOTS of friends. The ones she does the most with outside of school are those who she knows from Special Olympics. Special Olympics is a wonderfully social time for her. She doesn't do anything with "typical" peers anymore. They've long since left her in the dust. But guess what? SHE seems ok with that, it's me who has a problem. When you ask her who her best friends are, she never names kids from her mainstream classrooms. She names those she knows from Special Ed, or Special Olympics. THOSE are her true peers. Those are the friends who understand her, and TRULY accept her, quirks and all.

Angela's finds joy in everything she does in life, and it's infectious! I don't know how many times over the years I've been greet with this poses like these: (do you see a common theme?)

This morning when I took your picture, you popped out that pose yet again. As you appeared on my computer screen I realized....you're not my "little" girl anymore. You're 15. A young lady. With boyfriends and a social life and all the things that come with being a 15 year old.


So pretty girl, as I send you out into the world today, I do so knowing life is good. You're going to be fine. We're all going to be O.K. And I thank God once again for allowing me the blessing of being your mom!

When People Stare

While reading this post it's possible you will see my snarky side come out. Just say'in....

When my boys were little we stood out a little. Four boys within 4 years, two of them looking like twins might make you stand out. Sometimes.

What amazed me the most is the questions people....total strangers...felt they had the right to ask me when we were out in public places. That, and the fact they acted as if I owed them an answer. Some days I was cordial and friendly, but sometimes people just got under my skin. I came up with some scripts for when I really just wanted to put people in their place a bit, or at least mess with their heads some.

Question from total stranger: "Are they all yours?"

My answers:
"Umm....do you mean did I borrow some?"
Or turning around looking shocked, "What? I thought some of them were YOURS!"

Comment by total stranger:  "Wow, you sure were busy!"

My response: "What do you mean?" (in other words, you just made a comment about my sex life, but I'm going to make you explain your comment...in front of my kids!"

Comment from total strangers: "Took you awhile to figure out what caused that, huh?"

My response: "Took your mother awhile too, apparently!"

When Angela came along, the comments were of a different variety. First of all, she was beautiful (of course!) but she also looked MUCH younger than she was. At a year she looked like a 5 month old baby. At 2 she looked like a 12 month old, and at 3 she looked to be about 18 months. Even now, at 15, she looks like a 10 year old.

Not only did people ask how old she was, but when she was old enough to understand the conversation it really annoyed me that people would ask me questions with her standing right there, or talk as if she wasn't standing there!

Question from total stranger, who happened to be 60'ish, while standing in a check out line. Angela was about 8: "She's adorable. How old is she?"

Me, to Angela: "Angela, this lady asked how old you are." Angela to lady, "I'm 8. How old are you?"
stranger response: "Oh, I don't tell my age."
Me: "Not fair. You asked her age, she just asked you back. If you don't want to share, you shouldn't expect her to."

Don't get me wrong. Most of the time I will answer people's questions nicely, or even respond politely with, "I'm sorry, but I don't talk about my kids in front of them." It's only those who ask in a particularly rude way that get my snarky responses.

So fast forward a few years, and we now have Axel. Two kids with DS. I get the "Are they both yours?" question a lot. . There are times when it's appropriate to share Axel's story, and the possibility of adoption with others, and there are times when it's completely inappropriate. In that case I just answer with "Yes" and turn away to end the discussion right there.

But now Axel is in a halo. It's not every day you see a kid in a halo, in a restaurant looking and walking a bit like frankenstein. People are bound to want to look.

I don't mind kids staring. It is natural, and they're just curious. The don't know what the thing is on that kid's head and they have questions. It's the adult who tick me off. Twice in the last week grown adults have literally turned around in their seat to stare at Axel. I'll admit, I am not very nice about this. I have stared directly back at them until they finally peel their eyes off Axel and realize I'm staring back, at which time they quickly turn around embarrassed. I have also turned to them and said, "Staring is rude."

I have also had people come over to get a close up look at the halo. They want to get right over the top of him to see how the screws go into his head! No really...people DO THIS! I had people comment about the incision scar on the back of his neck (that is still kind of crusty looking.) saying things like, "I couldn't look at that every day." This one irritates me. You know, Axel has no idea what the back of his neck looks like, thank you, so SHUT UP!

The two biggest questions we get are, "Does it hurt?" and "How does he sleep?"

So here's your chance. Here's your opportunity to ask whatever halo related questions you can think of, and I will answer them as best I can so the next time you see some kid in a halo, you won't feel the need to stare. In fact, you can ask non-halo related questions too! And hey, if you can think of any good comebacks to these questions, please post them!

Catching up Pt 1

Going through my phone this morning I realized there are a lot of pictures and videos I haven't posted, I'm going to try to post a couple every day until I'm caught up!

Here's a video of Axel, taken the day before we left for Philadelphia to have his spinal fusion done. It's strange to me now to see videos of him without his halo. Apparently it's strange to him too, because he was watching this and kept pointing to his halo, then the video. I bet he misses that stupid neck brace!

Here we are (ok...so I'm behind the camera as usual!) at Ronald McDonald House waiting for our cab which will take us to Shriner's Hospital in Philadelphia where Axel will be admitted for surgery the next morning.

Dean and Axel, right before surgery. I was crying behind the camera.

Scratch That! :-(

Well, I guess NOT! Our caregiver we had lined up to watch Axel just canceled, so no ride for us tomorrow. I'm bummed. This is my most favorite-ist ride of the whole season. I'm going to go pout now.

It's That Time Again!

It's time for the 7th Annual Ride for Wishes! You may remember reading about it here last year. This is one of my favorite rides, for one of my favorite causes, of the entire year! If you're a rider, looking for a benefit ride, this is one of the most well organized rides we to participate in. Angela was a wish recipient four years ago (not sponsored through this ride, but it doesn't matter.) And we just found out not too long ago that Axel will be a wish recipient as well. This year there are two children's wishes sponsored by this ride. You can read about them here.

Angela and I were caught in a few pictures on last year's ride. We're easy to pick out! You're looking for the waaay cool sidecar! See the one right in the foreground of this picture? That's MY ride! Love my "Nooner & Spank"!

Do you see us in the middle of the group?

There is nothing more energizing to me than being right smack dab in the middle of a group of bikes just like this. Riding for a cause.

Here's our group at one of the stops. Right after this it started POURING!!! It isn't super fun to ride in a downpour. No...really it's not.  From left to right: My Sis-in-law Dawn, Me, Dean, Angela in front, my Brother in law Kelley.

Here we are, zipping past the State Capital. Kind of a cool picture.

After the ride and subsequent parade, there is a street dance with several different bands. Angela LOVES this part. This year Axel will get to go hang out and hear the music for awhile too.

Neither of the kids are coming along on the ride this year. Axel for obvious reasons, Angela because she'll be at her dads. But later in the evening they'll go down to the street dance with us, which they'll both enjoy.

So that's our plan for Saturday. What are YOUR plans?