Blogging about life and raising our five kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Friday, July 29, 2011

Joshua

My heart is breaking for the Parker family today. Several months ago they brought home two little girls from Ukraine.  I knew they also had a son, Joshua, who was having some medical problems but I didn't really know what all they were, other than it's complicated! I remember reading that she had two kids sharing a hospital room at one point and my heart broke for the whole family and what they must be enduring as they try to juggle everything. It is hard to have one medically complicated child, they are dealing with two.

My friends, due to progression of Chiari Malformation (among other things) that is no longer treatable, Joshua is on hospice care. Next week, on August 6th, they're having a 5 1/2 birthday party for him. Please go to my friend Lorraine's blog and read about the birthday party. Lets help make Joshua's day the most special of all!

It's COMING!!!!

Do you see it? Over there...on my left sidebar...that green box with a countdown going. See the countdown going? We are SO EXCITED to be getting that darned halo off!!! I've been trying not to complain, but the thing has truly destroyed our summer. There won't be much left of it when Axel's halo does come off, and he'll still be under restrictions, but he will NOT be encased in lambswool anymore, and he WILL be able to get wet!!!! Oh, how I've been waiting to get this boy in the water! How I've waited to see him RUN and PLAY...and get DIRTY like a little boy should.

Not only that, but just 3 days later is his 11th birthday. His first birthday party every. His first birthday with HIS family. The first time he'll have a day that is all about HIM!!!!  I can hardly wait!

Thursday, July 28, 2011

Conflict of Interest: What is it?

Are you involved with a non-profit organization and concerned about conflict of interest? Do you wonder what's o.k and what's not? "Conflict of Interest", when it comes to non-profits, is a commonly misunderstood problem. It's important to make sure the organization you're working for or with has taken steps to avoid issues revolving around conflict of interest. Several people have come to me lately, asking what I know about "Conflict of Interest" when it comes to non-profit organizations, and I told them I would do some digging and answer their questions here. Keep in mind I am NOT an attorney. Not even CLOSE in fact! It has also been several years since I've sat on the board of a non-profit organization.

I know conflict of interest is discussed a fair amount in board meetings, and I remember voting on a conflict issue when I wasn't completely sure I understood the problem. One example presented to me by a reader was this, "If a non-profit requires a client to work with a specific company, when an employee of that company sits on the board of the non-profit, meaning a board member is profiting off the decision of the non-profit to require people to work with that company. Would that be seen as "conflict of interest?"

From what I'm finding, and what I remember from previous board decisions, yes, that is a very clear case of Conflict of Interest. In that particular case, the non-profit could avoid conflict of interest by offering several different choices to the client. Those choices should offer the same or similar level of services and be competitively priced with one another, which would allow the client to choose who to employ rather than being forced into that decision.

You can go here to read more about how to avoid Conflict of Interest with non-profit organizations. I hope you'll find it helpful. I found it kind of interesting to read as past issues with non-profits came to mind.

Wednesday, July 27, 2011

Children all over the world

There are children with and without special needs all over the world who meet the criteria of "orphan". The care these children receives varies from country to country. There are MANY countries who will allow adoption of children into the U.S, some are Hague Convention countries and some are not.

You can look up the information about adoption from ANY country by going here. There you will find information about how to adopt from each country along with statistics on how many children have been adopted into the U.S. from each country on the country specific pages. (however, I don't know how accurate those are. The Immigrant Visa representative from the U.S. Embassy in Belgrade says the Serbia statistics listed are inaccurate. The page lists 12 adoptions for 2010, and he says there have been closer to 50.)

There is also the ISS. International Social Services which may be helpful when dealing with a country in which no U.S. adoption agency has a program.

Be brave. Step out in faith.  Contact other countries. But also BE SMART! Work closely with the U.S. Embassies in each country to make sure you're not being taken advantage of financially. Find U.S. based child-centered non-profit organizations working in these countries to help you. You really don't have to dig very far to find this kind of information.

I've recently made some contacts in another Eastern European country that has only adopted a couple of children into the U.S. Hopefully I can post that information soon!

Tuesday, July 26, 2011

And so I slack....

I have become a blog slacker. What can I say? It's summer, and since Axel is stuck in this God awful halo, and it has been hotter than Hades for like a month, our summer has been very boring! I don't even think I've taken pictures since the 4th of July.

The other part about blog slacking is my blog reading. If you don't use Google Reader, you will spend a lot of extra time clicking around to all your favorite blogs. With GR, all your blogs are in one place! You can see who has updated and read their posts right there. It even puts the number of unread posts behind each blog name.  It's great. It's convenient. It's a time saver. But I haven't even been doing that. I am behind on my blog reading, so those little numbers behind each blog name have been growing at a rapid pace.

There is a special place on Google Reader where you can "mark all read" and start over. It will wipe out all those numbers behind the names and you won't be behind anymore...in theory. But I can't do it. I can't click that button. I feel like if I do I'm going to miss out on something; some big announcement, a child coming home or amazing pictures of someone's vacation.

So this morning I went to google reader and I did it.

I checked the box.

How's that for an exciting summer?

Thursday, July 21, 2011

The Michael's Incident

Awhile back I had an incident in Micheal's craft store. I'm sure you've had a similar experience yourself. You know, when you go into the store for one small, inexpensive item, and spend...more. There was a similar incident five years ago, when I came home with a Xyron 900 (used approximately 7 times since purchased.)

On this day I was at the store to get velcro to modify Axel's shirts for his halo. Velcro. It only costs a couple of dollars.

But there is something about a store like Michael's, and all the "how to" books, and shiny jewels, and and and. It all just makes me feel so CRAFTY, and I feel that tiny little creative gene buried deep in my DNA squirming around. It says, "Set me free!"

The next thing I knew, I had done just that! I had FAR more stuff in my cart than I ever needed. But I was going to CREATE stuff, all with Polymer clay. No really! But you can't just buy the clay, you have to buy the really cool gadget tools too. Like the pasta machine (really!) and rollers and cutters and other little gadgety tools that I'm sure I'll use eventually. And books. Lots of books!

Some of you have have been around a couple years, and might remember when I got a bug to create clay babies. There are people in this world who can do some amazing things with polymer clay, and I wanted to be one of them. My results were not quite what I had in mind....



It's o.k. to say you're afraid. I was too! They're scary looking. I decided polymer was not for me, and I swore off clay babies for good. I would just have to admire them from afar. 

So how is it I now had a cartful of clay tools and stuff again? Because THIS time I got smart, and decided to stay away from realistic looking things. I mean, if it resembles something real, like a baby, it's too easy to see the flaws, right? 

This week I have finally had time to play with my clay. (somehow that sounds wrong.) First I made this guy, (it's a baby in a walker for those who have even less imagination than I!)  and I loved him...

That was until I took a picture and realized how unforgiving photographs are! Every little nick and blemish shows. Have I mentioned I am not the most careful person in the world? (There is a reason Dean won't let me paint wall in this house!) I'm pretty sure this has to do with my short attention span. Anyway, I was determined to try again, and this time FOCUS on what I was doing and not have little problems glaring back at me. So then I made these guys:




You might have noticed a color theme going on. For those unfamiliar, this blue and yellow are the colors that represent Down syndrome. 

So that's what I've been doing the last couple of days. I'm just going to keep practicing and practicing until I get good. I have an idea in mind that has been there for years. But whatever I do, I promise to never touch a clay baby again! 

*disclaimer* these items were created using the step-by-step instructions found in the book "Polymer Clay Characters" by Annie Lang, but don't look at the book and think mine look like hers. It's that short attention span thing.

Dreaming Under Prayers

I've spent days trying to formulate this post in my head. It deserved a post a week ago, but the words weren't coming.

It all started with a knock at the door.

It was the UPS delivery guy, bringing a package for Axel, addressed from Dean's cousin Mona out in California. Axel was very excited to get a package with HIS name on it!

Together we opened the box, and I pulled out the letter that was enclosed.

Immediately my tears started flowing. In the box was a prayer quit, and it is beautiful!!!!  It is beautiful, with different cowboy patterned fabrics. It is perfect for Axel! All made by Mona and her friends in the quilt group at her church. Mona asked that they make a quit for Axel, so that we would have a visual way to see all the prayers that are being said for Axel and the rest of us. Each knot in the quilt represents a prayer said, and as I touched each and every knot, I felt the love that came with each one of them.

But Mona could not know what God does. How PERFECT this quilt is for Axel. You see, Axel loves little "things", like yarn,  to roll between his fingers. It's how he comforts himself when he is stressed, and it's how he puts himself to sleep at night. Now, as he goes to sleep, he finds the tail of a knot and rolls it between his fingers. It's like he's rolling all those prayers between his fingers, feeling each and every one of them.

And I have no doubt that's exactly what he's doing.


Thank you to Mona, and the Prayer Quilt Ministry at St. Andrew's Lutheran Church in San Diego, CA, for covering Axel and the rest of our family in prayer.

Edited to add: Mona resPonded tonight, and thought I might like to know a little more about how the prayer quilt came to be. "...The ladies in the Prayers and Squares group at my church take requests from members and make these beautiful quilts. Then on Sunday morning, any quilt that was made that week is presented at the altar and the congregation is told why each particular quilt was requested. After the service the quilts are laid out in tables in the courtyard and members stop by to tie the knots and say a prayer...."

Tuesday, July 19, 2011

I'm home

This will be short, cuz I'm *really* groggy and am fighting to keep my eyes open.

First things first. I do NOT have esophageal cancer. YAY!

I do have some other issues going on, all of which can become more serious later on if not dealt with.

I have a hiatial hernia, which is why the constant pressure against my esophagus, and why it's worse when I lay down. It can also cause reflux into the esophagus.

I also have a Schatzki's ring. It was big enough for now that it didn't need to be dilated, but it will have to be watched. This is where my food is getting hung up, and why I feel like I have something stuck in my throat. Because I do.

Schatzki's rings are caused by GERD. Untreated GERD, combined with the other issues, put me at more risk of developing Esophageal cancer later on, so I need to get the GERD treated. Didn't know I had it. I have no heartburn or anything like that. So, I'll be having an overnight PH probe done. YIPPY SKIPPY!

I'm just reading the GI's report now, and it says suspect laryngopharyngeal reflux as well. The treatment for that is the reflux meds I already tried last spring, which did nothing, so I'll have to talk to her about  that.

I will finally say the C word now. Cancer. My biggest fear was esophageal cancer. I'll tell you know, if you have untreated reflux, you need to treat it aggressively! Untreated reflux is the cause of Barrett's esophagus, which leads to adenosarcoma of the lower esophagus. Once it's in your esophagus, by the time you start having symptoms it is very often already in your stomach.

Ok, I'm going to go take a nap now. Nighty night!

Climate Changes

In Minnesota, we get one, sometime two days out of the summer that reach 100*. I think we're on day 10 or 11 or something like that now. At the moment it is 99*.

The humidity level in the rain forest average between 77 and 88%. We are currently at 85% humidity here! Did I mention this is Minnesota???? 99* and 85% humidity. YUCK!!!!

It's still better than snow though. I'll take this over snow any day!

Monday, July 18, 2011

Entrapment

I *really* wanted to get a picture of this, but it would have been cruel to leave the child there to get the camera. It was tempting though.

Axel was playing with his train table. He was just barely out of my sight, but in full sight of Dean. He plays so nice and quiet, that boy!

Then Dean said, "Axel...? What are you doing?"

Silence

"Axel...are you stuck?"

A tiny voice said, "Yes." (YAY! A developmental milestone!)..... "GUCK" (stuck)

I went over to investigate. Apparently Axel had dropped one of his favorite booklets under the train table and sat down, and leaned under the table a bit to get it. That's when the bottom edge of the table became wedged between his halo bolts, uprights, and other parts. It took BOTH Dean and I to get him "un-guck".

He was probably there a full 5 minutes before we realized there was a problem. He never made a sound, just accepted the fact he was now trapped and resigned himself to that fate. A couple months ago he got his finger caught in the mechanical parts of a toy. He pinched it pretty bad, but no sound was made. I didn't discover it until I walked by his room, then did a double take when I realized he had an odd look on his face, while holding a toy in his hand. Or was he? Nope, his finger was badly pinched in the trigger of a nerf gun.

Never a sound was made.

So many people have asked how Axel has done accepting the halo. When he woke up with the halo, the look on his face was that of resignation. "Now I have this thing on my head. Oh well." He has never once complained about it. It's kind a sad, really. Axel is too accepting of things. He hasn't yet learned that he can put up a fuss. He can complain. He can express PAIN. He can YELL if he is hurt...or if someone does something mean to him. We know why he is this way. It's learned behavior. It's from years in an institution and having absolutely no choice in anything. From being imprisoned in some fashion or another. The emotional scars speak for themselves. Hopefully someday Axel will learn that he can speak for himself.

The Art of Distraction

The purpose of this post is to distract you. You know, like a slight of hand kind of thing, only this will be on your computer screen. Are you ready?

The Mystery of the Puddle in the Car

We bought a car in September of last year, right about the time we were trying to scrape together the cash to bring Axel home. It's a flood car. Do you know what that is? It's a car that's been in a flood, totaled by insurance, auctioned off, gutted, and the entire inside re-done, wiring checked out, etc.

We've bought flood cars from this same dealer before, as have many of our extended family members. This salvage dealer has always (and still is) great to work with. We bought a 2009 Toyota Camry with just 30,000 miles for less under $6,000. Car runs GREAT! Every thing in the mechanics and wiring is perfect. (Dean is driving our other flood car. Paid $4,000 and he's put 120,000 miles on it in 2 1/2 years! Its certainly paid for itself.)

Taking deep breaths as I remember I have a really big day tomorrow. Breathe in, breath out....

So no issues with the car. Drove it all winter long without issue. Drove it all spring without a problem. Vacuumed it out about a month ago, both front and back seats, and all was well. Love my car.

Until about 3 weeks ago, when I noticed a bottle of water had leaked on the floor of the rear passenger seat. There was standing water back there, so I soaked it up with a towel. Two days later there was another puddle there. There has been a puddle there EVER SINCE! I suck it up with my carpet cleaner and the next morning there is 1/2 inch deep puddle there again!

Trying not to imagine a tube being shoved down my throat.

Where could this be coming from? I could see if there was...like...water in a door or something, but FAR more than a door's worth of water has been sucked up from the floor of the car. And...wouldn't we HEAR the water in the door? I could imagine this happening if there were a leak in the floor and we were driving through rain or something, but it happens with the just parked in the driveway. IN.THE.SUN!

Really totally freaked out about what the results of tomorrow could be.

My theory is this car has a ghost.

Some of you may remember my posts about the ghost in our house. You know the one who turns the bedroom t.v. on half way, switches lights on and off, hides my keys and harasses the dogs when they're napping.

Whatever you do, don't google the symptoms I've had for the past 9 months. The searches never lead to anything good. I know, I've read the first 30 pages of the search results using a wide variety of search criteria.  

I don't think it's the same ghost. I think this is a car ghost. Why would a ghost leave a puddle of water in my car? I'm thinking I don't want to know, but I'm getting quite annoyed with it. It makes my car stink. It get stuff wet. It eliminates Angela sitting there when we're going somewhere as a family. I could have Axel and Angela switch seats, since Axel's feet don't reach the floor, but this is Angela we're talking about. Change is NOT going to happen.

I hope I remember to not eat anything after midnight and until my late afternoon appointment. I have a tendency to absentmindedly put food in my mouth when I'm on the phone. If you talk to me tomorrow, remind me, ok?

Dean didn't really buy my "ghost in the car" theory. I'm not surprised really, considering he also doesn't believe there's a ghost in the house. So I googled, puddle+rear passenger seat+camry.

Guess what? It's NOT a ghost! It's a plugged condensation tube! See, Google CAN be your friend when you're searching non-medical related stuff. WHO KNEW?! It it wasn't 100* right now, I would go pull the carpet out of my car to find that dang hose. Maybe tomorrow, when I'll need further distraction.

Saturday, July 16, 2011

Project de-clutter

A year or so ago we rented a HUGE dumpster, and filled it. Most of that stuff came out of our storage room that the mice had infested, along with our shed that was just as bad. Most of the stuff we ditched we hadn't seen in years, so it didn't really make a visible difference.

Thursday was a bit trying for me, and really threw me for a loop. I keep telling myself that I'm imagining the lump, and they're not going to find anything anyway. And then I swallow again. Or take a pill and it gets stuck. And oh yeah...the doctors felt it.

My mom said she is coming down for the endoscopy. My mom lives 4 hours away, and while she is often in "the cities" for various ministerial obligations, I don't remember the last time she had time to stop in. But now she's coming down for this. I will be honest...that freaked me out more than the fact the doctors felt the lump too. My family is pretty medically knowledgeable, and my mom rearranging her schedule to come down for this two hour procedure...well..wouldn't YOU get freaked out?

So, the clutter in my house has been driving me crazy for several weeks, but I just haven't had the energy to do anything about it. Somehow Thursday put me over the edge. As the kids' PCA was leaving we set her schedule for next week. She'll be keeping Axel busy (Angela will be away at camp) so that I can work on the de-clutter project.

Then Friday happened, and as I sat at the kitchen table I could feel the kitchen closing in on me. It was crushing me; the cabinets, the stuff collected on the counter tops, the cabinets I'm afraid to open, the poor use of space because of the previous owner who installed them. My heart was racing and I couldn't look away from it. I think I was having a small panic attack. And now my mother is coming.

I emptied the worst but also most-used cabinet when I realized I needed containers. Axel and I went to Target and got some "stuff" to help me organize. At midnight last night I had one wall of upper cabinets done. (One coffee drinker in the house and 38 coffee cups? I think that's called "excess"! Had my mother opened that cabinet, a cup would have fallen on her.)

I also attacked the school corner, which for weeks has been a collection of bags and piles with nowhere to put the stuff. Oh, and I put the Nativity set away. ;-)

Today and tomorrow I'll be taking a break because I have to pack Angela for camp, and make the four our one-way drive tomorrow to drop her off. Monday I'm back to de-cluttering.

Oh, and for those who are wondering, Tuesday is my endoscopy. I know they won't find anything. I just know they won't, because I'm only 44 and I'm not in a high-risk group. Very rarely drink, don't smoke, sometimes eat fiber (GREEN SMOOTHIES!) and I don't chew tobacco. Given all that, its very unlikely they will find anything. I would think if there were something serious there, it would feel worse than it does. I can eat, I can swallow (though sometimes stuff gets stuck) I'm not in pain...usually.  I'm fine. Really. But if they do find something, they'll be taking a biopsy.

Thursday, July 14, 2011

Well...wth?

ok, well I started this post three times, and then erased it. I have no idea what to say. I should probably just delete now.

........2  hours later....

I would like to start the entire day over, thank you very much. I just went to the doctor to rule some things out. That's all. I should know my track history with that is not very good.

Good grief...no clue what to say. It has been a long day.

.......30 minutes later.......

A few months ago, I would guess October or so, I started having some trouble swallowing. It felt like there was a lump in my throat, and food was getting stuck right there. It caused me to clear my throat constantly. I really didn't have time to do anything about it. I was getting ready to travel to get Axel and all the preparations that come with that.

After Axel and I came home I went to my ENT. He looked down my throat with a scope and from there couldn't see anything, and my vocal chords looked fine. The most common cause for chronic throat clearing is reflux, so he put me on Prevacid. I took that for 6 weeks, and there wasn't any change.

The throat clearing got better for awhile. "Better" being not "constant".

In May when I went back to Serbia, it was starting to bother me again. Worse this time. Sometimes when I ate, it hurt to swallow as food moved past what I felt was a lump. My friends in Serbia made comments about the throat clearing, which was now constant. Yeah yeah yeah...I'll get it looked at.

Then on Sunday, I was in the shower washing my face when a spot on my nose started bleeding....and bleeding and bleeding. Ok FINE, it's time to go in.

Today was the day, and the spot on my nose was still bleeding. What was on my nose appears to be Basal Cell Carcinoma. The plastic surgeon happened to be in today, so he removed it and sent it off to pathology. He's pretty sure, based on how it looked, that it was Basal cell. If there's a skin cancer to want, it's Basal Cell. My dad has Malignant Melanoma, and I'm glad that's not what's on my nose. Basal cell = remove it and move on.

My throat, on the other hand, is another story. I had already diagnosed myself with something related to my thyroid. It's easy to treat, and in the grand scheme of things not that big of a deal. Even if it was thyroid cancer, I could handle that.

The doctor felt all over my neck, commenting on the very large lymph node under my jaw. She did not feel any nodules in my thyroid, and it was of normal size. She had me swallow water, and as I did she could feel the lump I was feeling. In fact, if she put any pressure at all there while I was swallowing, it REALLY hurt to swallow. The lump didn't hurt, the swallowing did. She called another doctor in, and he felt it as well. They agreed, there is a lump, and it feels as if it's inside my esophagus. Now they're scheduling me for an endoscopy so it can be looked at, and a biopsy taken. By the way, they did a thyroid panel, and those results were just posted to my online chart, and my thyroid levels are well within normal limits.

Google is not my friend right now. In fact, I'm just going to stay away from it all together for a bit.

I do know that I don't have any of the "high risk behaviors" usually associated with things like....esophageal cancer. I don't smoke, I rarely drink, I don't chew tobacco, and as far as I know I don't have reflux.  I am about 30 lbs over weight, and my diet basically sucks. I also know that all of that doesn't really matter. A person can have no risk factors and still develop esophageal cancer.

I begged them to tell the GI doctor to put me all the way to sleep for the endoscopy. I don't want to remember it, and I don't want to hear stuff. I also don't want to feel the scope shoved down my throat. I'm a big baby, I know.

I will not lie. This pretty much freaked me out today, along with a couple other factors I haven't mentioned here.  Axel and I went to the grocery store and I wandered around there three times and still couldn't figure out what I needed to get. Ok, well that happens a lot, but this was worse than normal, I think.

Eyes of a Child




In the eyes of a child there is joy, there is laughter
There is hope, there is trust, a chance to shape the future
For the lessons of life there is no better teacher
Than the look in the eyes of a child

 On occasion you will hear me complaining about Zhen's eyes. Seriously, why couldn't the orphanage arrange to have his cataract removed when he was a baby? Then his vision could have developed normally as he grew. The sad truth is that in Eastern Europe, babies with disabilities just don't get the medical care that they need.

Then I stop whining. And I'm thankful. For I remember a bright and beautiful boy that I met at church in Ukraine last summer. Meet Andrei...


About two years ago, Andrei was having some problems with his eyes. His parents took him to an eye specialist in Kiev who recommended laser surgery! Cool huh?

After the laser surgery was performed, the doctor came out to talk to the family and said... "Oops, we made a mistake and your son is now blind in that eye". (Can you even imagine?! The word "malpractice" comes to my mind.) The doctors did not operate on the other eye at the time, (thank God!) but said that it would need surgery in the future.

Over the course of the next two years, Dema and Marina, Andrei's father and mother, home schooled Andrei because the doctor said that a blow to the head or a fall could make him permanently blind. Now, I ask you, is that any way for a young boy to live, in fear of getting bonked on the head or falling down? No rough housing with his little brother? No running?

Now Andrei is now down to 50% vision in his one good eye.

What a nice looking family! Andrei's father leads the singing at church and teaches young adults. His mother is the church pianist. This photo is a couple of years old.

Last Friday, Andrei was having some problems with his eye and so the doctor wanted to take his eye out (!!!) and coat with silicone to help preserve the eye. Well, instead of that (sheesh!) we would like to get Andrei to the United States as quick as possible so that the doctors here can work on him. Marina had an appointment today at the US embassy in Kiev and thankfully, she was able to get the visas they need to leave Ukraine right away.

In a couple of weeks Andrei and his mother will travel to Chicago. A doctor there believes that he can help save his one good eye. A nearby church has agreed to host mother and son for one month while Andrei receives treatment. The good doctor cannot treat Andrei for free, but he will reduce his fee. What a great opportunity!

In keeping with our mission to improve the lives of children in Crimea, Project TLC would like to assist this family with their expenses. We will dedicate contributions received over the next two weeks in order to preserve what is left of Andrei's limited eyesight.

The total projected need is at least $2000, so please share this far and wide, and donate as you are led. You can go here to donate,


Or you may send your gifts to:

His Kids Too!
219 – B Delta Ct.
Tallahassee, FL 32303

*note Project TLC on check memo
God bless you!







Wednesday, July 13, 2011

Hoops



Axel and I are gonna go buy hoops today. Maybe.

Tuesday, July 12, 2011

A first!!

Since Axel has been home for 7 months now, we don't see quite as many "firsts". When we do, we can sure tell, but there are times when Dean and I look at each other and ask, "I wonder if he's ever done this before?" We can only guess.

It is evident to me that Axel got away with A LOT of naughtiness wherever he was. Clearly tears were a tool for avoiding anything that appeared difficult to him. And when he thinks the boss of the place is out of eyesight? That naughty laughter starts almost instantly. He doesn't realize we can hear what he's doing. LOL

So for the past several months Axel and I have been sitting down to the table each day for school time. As long as we're doing something that is easy for him, he's happy to comply. The second something is introduced which is even slightly challenging to him, the tears start to flow. Well, it's not really tears, it's SCREAMING/CRYING.

When this first started, I would give him a minute to compose himself, then we'd start up again. Then it became an instantaneous occurrence, so I would remove him from the table and off to the crying spot until he calmed down. You know, it is SO EASY to see what is really happening when you're not in the midst of things, or are an outside observer! LOL It took me a couple days to realize the crying jags were lasting longer and longer each time. In fact, I think it was the time he cried for a full hour. Only it was a rhythmic, no-tears-involved kind of cry. Mr. Smartie pants figured out that the longer he cried, the longer he'd get to stay away from that table.

There is also another dimension to the cry. I'm pretty sure some of it is reflex. Like it is a learned behavior and normal for him to cry for hours at a time and once he gets going he can't stop himself. He gets a look of desperation on his face, similar to a child who cries then does the breath-holding thing. He starts to desperately point at random objects all the while crying this rhythmic cry. The first few times it was very sad to watch. After that it just became annoying. Frustrating. Sometimes he would get a look of total fear in his eyes, which made me wonder what memories are locked inside him mind. Ending our lessons on a positive note was nearly impossible some days. Some days I felt like the meanest, most evil mother in the world. Some days I felt like I'd lost all compassion. Some days even I avoided our lessons!

This behavior was NOT going to fly in school. I wanted to tell him, "Listen kid, you're in for a reality check pretty soon if you think you can do this at school!"  I needed to teach him a way to turn this off. I hate to compare my kids to my dogs, but there is so much about kid training and dog training that is cross applicable. With dogs, when there is an undesired behavior, you need to only stop the thought process, then predict the behavior so you can guide them to a different response the next time. Do this enough times and you will erase the "tape" that has been replaying over and over again in their brain, replacing it with a more appropriate thought process. How could I do that with Axel and his crying that so interfered with what were sometimes very minor tasks?

One day back in April, Axel was working on a letter activity with me. He could recognize all of his letters by that point, both upper and lower case. We were matching them together, an activity that was easy for him. We'd only done 3 pairs when he intentionally start matching them incorrectly. This is called "attention seeking behavior", and he does it a LOT! He would look at me out of the corner of his eye, then put an incorrect match together, then sign "wrong", and get the guilty look. He would do it again, and again, and again if allowed. I wouldn't allow it, instead removing all of his choices so the ONLY match possible was correct. Ohhh I was playing dirty and he didn't like it. The crying started. Loud, frantic, fearful crying.

"Axel, jump up and down like mommy."

He instantly stopped crying and started jumping. Seriously, I've never seen anything like this! The ability to STOP like you'd never been crying in the first place. Like you sneeze, and then it's done kind of thing.

"YAY! Ok, back our letters."

This worked two times, and then he was on to me. He didn't WANT to stop crying, because the crying is what kept him from having to work. It's more than a power struggle though, because once the crying started he couldn't turn it off without having his brain engaged with a different activity. It's slightly more than just distracting him. Can you tell I'm having a hard time explaining this? LOL

I asked myself, "What have I done that is really very hard, maybe even painful, that I needed to distract myself to relax?" Well, giving birth of course! And what are we taught to do? BREATH! Deep, cleansing breaths. Later that day, when we were just hanging out having fun, I taught Axel how to take "big breaths", and blow it all out. I spent a couple of days practicing this with him here and there. I even modeled how to use this when crying. I cried a fake, frantic cry, then put my hand on my chest and took a deep breath with a big exhale, then back to what I was doing.

Finally it was time to sit down and do some work again, and within a couple of minutes the crying started, "Axel, take a deep breath." He put his hand to his chest, sucked in, exhaled, and the crying stopped. Within just a few days he was able to make himself "relax" and take a deep breath, and stop the crying on his own. It was great!

And then he had his surgery.

A few weeks later, when it was time to start our lessons again, it didn't take me long to discover that he'd lost many skills, including the ability to calm himself. Even the easy tasks were now a challenge.

I was so frustrated. All that work down the drain. We started over.

Then yesterday happened. Axel and I worked at the table on LOTS of different activities, and for the first time ever, he didn't cry. He didn't shed one single tear AND he did a couple very challenging activities!!!  Axel felt success. He did it. He made it through the lesson without crying. He did some things that, while they were within his ability, were very challenging, but he DID THEM. I'm praying that both Axel and I can remember how good that felt, to get through a lesson without all the unnecessary stress.

Monday, July 11, 2011

School plans for fall: Pt 2

And so, just days before Axel's surgery, we met again to discuss observation reports and determine how to best meet Axel's needs in the next school year. With surgery looming and just days away, school decisions, bonding issues....this was a lot of stress at one time. I promised myself I would NOT cry during this meeting. Most who know me will say I am NOT usually a crier, and yet the people sitting around that table had seen me cry at every single meeting, and heard me struggle to maintain composure on every single phone call. Please God, just this once, let me be tear free!

The observations from the DHOH staff were all the same. Axel's communication needs were not being met in the classroom. There were times when Axel would...in sign... initiate conversation with staff, and either they didn't notice or they didn't understand him. There were other times when staff initiated conversation with him but they either forgot to sign, or signed incorrectly so Axel couldn't understand them. By early afternoon, Axel would stop communicating and start acting out instead. Please remember, this is NOT the fault of the classroom staff! It would be like expecting your child's regular ed. teacher to suddenly learn ASL overnight. It's just not possible. 

We discussed options such as an ASL interpreter. Axel does not have the ability to access an interpreter at this time. He can't understand this person is signing what that person is saying. Its too confusing for a child at Axel's level. We discussed the possibility of a classroom aid who is fluent in ASL. (there are a few in the district) That brings the question of who would be teaching him, and who would be assessing him? Neither of these options allow for Axel to have free and natural communication with his peers or classroom staff. The Dhoh staff recommended that Axel go to the ASL program. (Despite my prayers, I'm pretty sure I was crying by this point.) 

If Axel had even the slightest hearing loss, the decision would be easy...he could go to the ASL immersion program in the neighboring district. 

But Axel hears.

In the end the district agreed to write the referral to the other program, but because it's a program for deaf students, the other district has the option of rejecting the referral. Those seats in the classroom are meant for students who have hearing loss, not kids like Axel.

Two weeks ago I found out, informally, that Axel has been accepted into the other program! Not only that, but they are EXCITED to have him there! Just like me, they can't wait to see Axel SOAR with this new and constant exposure to a fluent language model. I know our home district is excited as well. There will still be kinks to work out, and behaviors to work through as Axel realizes that everyone there can understand him even when he's yelling at them in made-up signs. LOL 

Sunday, July 10, 2011

School plans for fall: Pt 1

*note* I originally wrote this as one long....very long...blog post. You would have had to go through an entire pot of coffee to get through it. It would have taken up all of your precious blog reading time. So I've split it into two posts, and you'll only go through half a pot and if you're really lucky, still have time to catch up on facebook or other blogs. LOL

The end of the 2010-2011 school year brought lots of changes in our house. Angela reminds me ever.single.day that, "Next year I'm a 9th grader. A freshman. I go to the high school! YAY ME!" Seriously, I hear some version of that multiple times every day.

Sometimes she'll ask me, "Mom, what's in September?"

I play dumb, "I don't know Angela. Is that when we're going to the moon?"

(slapping her hand to her forhead in Angela-like dramatics) "NO!!! That's when HIGH SCHOOL starts! You know, ME! I'm going to the HIGH SCHOOL!"

Gee, how could I forget?

Needless to say, transitioning to the high school requires lots of planning and some wringing of hands on my part. The bus comes EARLY, like 6:50 a.m. early. It's a half hour earlier than her bus came in middle school, but I think she'll be fine. She's so excited to get to school every day that only rarely did I have problems getting her out of bed. In fact, she often beat me to the kitchen! I'll be praying this year goes just as well.

The biggest changes in September will be for Axel. I have shed more tears about this child's education than I've EVER shed in all of Angela's 10 years of school. These decisions have caused me more anxiety than I ever imagined possible. I cannot explain it. I have no doubt I have caused some staff within our district to think I have totally lost my marbles. I think it's because I brought this child half way around the world to give him a life he could have never had otherwise, and I'm not about to let anyone or anything stand in his way. I also know that just as with Angela, I am Axel's voice.

Axel's communication is 100% ASL, with only a handful of words that he's able to say verbally. But in sign? He is SOARING! He is gaining, on average, 3-5 new signs EVERY DAY. If you show him a sign once, he's got it. He will play with the new sign a bit, practicing how to use it, and wanting to see me using it in as many ways as possible so he understands how the sign is used. He still usually only uses one sign at a time, but longer phrases are emerging. This morning he was outside with Dean. It is 85* out there, with 50% humidity, making it feel like 94. (Far too hot for a little boy encased in a lambswool vest!) He came in the door, "Mama! Mama! Hot...thirsty...water..hot!" This is a HUGE step! HUGE!

Being home with just me he was SO BORED, and he had started dreading our lessons. If I'd had a house full of kids I would have home schooled him in a heartbeat. But he needed kids. He needed friends. So off to school he went. The program he was in is not set up, nor does the staff have the appropriate training for a child who's signing at the level Axel is at. Axel has very unique language needs, which the staff was not prepared to meet. (nothing wrong with that, they can't be trained for everything!) I knew the very first day that it was the wrong placement, but during his assessment process way back in February I had no idea how far he'd really come with his signing, and how his communication needs were just not going to be met in that classroom. I came home that very first day crying. I couldn't believe I had under-estimated my son so badly. I couldn't believe I was going to leave him there, with him feeling lost and with incredibly limited communication with anyone. But he needed to learn about "school" and what happens when a person is there.  He needed to learn things like how to ride a bus, how to walk in a line, how to listen to and follow directions (from someone other than me. LOL)

n the 6 weeks he'd bypassed ALL of the goals written for the entire year. We'd just been guessing you know. Not really sure what exactly Axel was capable of doing. A year of goals, met in 6 weeks. And yet  he'd lost a lot of what I had taught him in early reading skills. His counting that was solid went he went to school was  now shaky. He learned to zip his jacket back in February, and yet one of his new IEP goals was to zip his jacket independently 75% of the time. OHhhhh I see!!!! Axel had clearly pulled the wool over some people's eyes and had them convinced he was needing help with things he could do on his own! (They're not the only ones who fall for this, by the way! Dean and I have both been fooled many times. LOL)

 If you've been reading here a long time, you know I didn't spend that 6 weeks Axel was in that classroom just twiddling my thumbs, waiting to see what happened. I knew of other programs in the area which would be more appropriate for him.  All were out of district, meaning it would be tough to get him  in. I had my sights on one program in particular. The problem? It's for students who are deaf or hard of hearing.

Axel doesn't have hearing loss.

This program is a full-immersion ASL program, with the addition of Cued Speech for those students who's parents want them exposed to it. I am a HUGE advocate of Cued Speech, particularly when talking about hearing students who are hearing English, but haves speech and language delays. Full immersion ASL would mean that Axel would be able to freely communicate with both staff and students in the program. It really is the Least Restrictive Environment for him. The downside is that, while he would still get speech therapy there, the emphasis in the classroom is not on speech. Guess what? I don't care! The emphasis in this classroom is LANGUAGE and communication. That is what Axel needs right now. His speech will come later.

So I asked my district for a couple of things. One, was to have the staff from our district's deaf/hard of hearing (dhoh) program to observe Axel in the classroom. They are the only ones who would be able to observe from the perspective of a student who uses ASL. My other request was for me to observe the other program. I knew a lot about it (I used to be in the field, and the staff there was familiar with my work with kids with DS who use Cued Speech, and had attended Cue camps with many of the staff.) but I hadn't seen the program in action in years. Maybe what I remembered was no longer applicable to the program. I wouldn't know without seeing it.

Our district granted both requests, with the agreement that we would meet at the end of Axel's six week stint in school to go over all the observation reports and figure out placement for fall.

One of the observations I'd made during Axel's first day of school was recorded here. This was my epiphany moment. Axel's very first day of school ever in his life. It was like getting slapped in the face.


Axel's sign vocabulary is already well beyond that of the classroom staff. Because of this, he will be missing many opportunities every day to learn new signs. One example is during their morning meeting time. The classroom teacher is not able to sign the numbers past 10 or 11, they counted by 1's, 2's, 5', 10's up to 122. As you know, a student learning to count needs to hear the numbers many times before they can do this on their own. Likewise, a student who signs need to see them just as often before they are able to sign them. The teacher counted money up to $1.22. (to match the number of school days thus far) Because the teacher does not know the signs for penny, dime, nickel, quarter, dollar, cents, etc. Axel did not have access to that vocabulary. I estimate that during that one hour block of time Axel would have been exposed to 50-60 signs he'd never seen before. If he saw them every day he'd be able to produce them after a few exposures. Staff was able to witness this today when I introduced the sign for "line up". Axel had never seen this sign before. I showed it to him twice, and how to form it himself. Half an hour later, the music therapist told the 1st graders to "Go lineup", and Axel signed, "line up".


So fast forward a few weeks, when I visited the ASL program. Although I wasn't there until 10:30 a.m., it just so happened it was calendar time. The students were counting (in ASL) how many days of school had passed so far, they were doing patterns (blue, yellow, blue, yellow) that were built into the lesson, counting money, learning new ways of greeting people, learning to ask questions of their classmates, days, weeks, months, year...all the usual calendar stuff. All in ASL.

I tried to keep the tears from spilling out of my eyes. I knew this was where Axel needed to be.

Then we went across the hall to the Cued Speech program. Most of the students there have cochlear implants and are learning to use the sounds they're hearing. Some of the students are deaf, and using CS for reading and learning English. The classroom teacher introduced Axel (all in CS w/voice remember) and each of the students introduced themselves. All in CS with voice from those who were able.

Axel is just learning to cue, but I am the only one he sees it from, and yet he is starting to produce cues on his own. Here he would see it everywhere, it would be encouraged and reinforced.

(More tears from me.) There would be no limits for him here.

Could I get our home district to agree to send him?

To be Continued.....

Saturday, July 09, 2011

Here and There

I saw you there
your smile so sweet
eyes full of wonder

I held you there
felt the bones beneath your clothes
caressed your scarred fingers

I promised you
in my heart and with my voice
promised to find find someone

I left you there
walked away wiping my tears
knowing what I had to do

I found someone
a mama to love you
to fight for you

I'm here
waiting for you
fighting for you

I'm praying for you
It is all I can do
Pray for you

You are there
I am here
He is with both of us

He sees you there
He knows your smile
He knows your eyes
He knows the bones beneath your clothes
He knows my promise
He knows my tears
He knows my heart
He hears my prayers

Legos

 There are lots of things about raising little boys that I'd forgotten about, like burping (intentionally) and farting, and dirty knees. And bugs. And little things shoved in the pants pockets. I could go on...

I thought my days of stepping on legos in the middle of the night were behind me. I was so wrong.

I also didn't realize how dangerous it is to build tiny lego vehicles with a boy in a halo who really wants to see ALL that is going on! That thing is dangerous to others!




Friday, July 08, 2011

This is dinner. Deal with it.

A couple weeks ago I stumbled upon a (new to me) blog. I don't remember how I got there, and I guess it doesn't really matter. What matters is that I enjoy the writer. She is "real". Ok, yeah I've never met her, but she SEEMS real, so that's good enough. After reading for a few days, she posted this post. If you read through the comments, you'll see one from me. I meant what I said. About the smoothies, not the running thing. I was lying when I said, that. Or drunk. Yeah maybe I was drunk that day.

So the smoothies have been haunting me. And besides, I didn't know where to buy almond milk.

Then today she posted about her love affair with coffee. It's possible I read that post right after a mad dash out of Target and my 5th trip to the restroom all because of my vice: Mountain Dew. It is my coffee. Every few months I get off the stuff, then one day out of the blue I buy one and there I go again.

...........sigh..........

So anyway, today I decided we were going to have these green smoothies for dinner.

Stop laughing.

I know that some of you are thinking to yourself, maybe even out loud to your spouses, "Leah decided to make Dean drink a green smoothie for dinner so she didn't have to cook."

That is just not true. Well, maybe it probably is a little bit. I mean, we ALL know that not only do I not belong in the kitchen, but the kitchen does not like me. Seriously, I'm pretty sure Satan's brother himself lives in my kitchen. It is THAT bad. I am THAT bad. My ideal meal is one we can drink out of a glass, I think.

So tonight at 6:15 I told Dean I was going to run to the store to get stuff for dinner. Yes, 6:15. I have a problem called "avoidance issues" when it comes to making dinner, probably because I am afraid of my kitchen. Anyway, Dean asked me what I was getting and I told him, "I don't know yet."

I was lying to my husband. I knew exactly what I was getting, but I knew that he was not going to be all, "Oh, that is a GREAT idea!" and I would then have to be all, "No really, this is good!"

While Dean had been napping on the couch I'd been googling "Where do you buy almond milk?" and discovered something amazing! That all I needed to do was walk into the ORGANIC section of our grocery store. Who knew??? Well, the store I usually go to had shelf stable almond milk, and that just doesn't seem right to me. "Milk", no matter animal, vegetable or fruit, should be cold. So tonight I went to the expensive grocery store. You know the one with carpet and elevator music? There, in the refrigerator section, was the almond milk.

I got the other ingredients and headed home. I called my sister and told her what I was doing and she laughed, said something about being cruel to Dean, and wished me luck with that.

When I came in the door with my bag of stuff, Dean was looking at me with that, "Well? What's for dinner?" look. You know the one you get at 6:50 p.m. and the man hasn't eaten yet? I sat down and read to him a couple of the blog posts I mentioned above. Some of us...ahem...have major blood pressure issues going on in this house, and all of the grown ups are fat and need to do something different. As I read the blog posts to him, I was trying to make them sound all light and happy, and "Look, we can get skinny LIKE HER!"

Finally Dean asked, "So what's for dinner."

"Green smoothies!" (insert GIANT toothy grin here)

Now I want you to find a clock with a second hand and stare at it for 30 full seconds. That is how long Dean stared at me.

He blinked once.

I walked to the kitchen to start making our green dinner when finally Dean said, "You know, a lot of people drink smoothies now. I know, because I sell them, and we sell a lot of that stuff."

Thank you God. I bow before your throne in praise of your grace and mercy. This could have been so much worse.

Dean drank his green smoothie, and other than the fact it wasn't cold enough for him, he didn't complain. And Axel? He drank his in record time. Angela was at her dads, but I know she'll be game.

So maybe this might be a breakfast thing, but if I can find some green smoothie recipies that would work for a real dinner, I'll use them. And to my sister? Neener Neener Neener!

Thursday, July 07, 2011

It's scheduled!

Axel is scheduled to have his halo removed in Philadelphia on August 10th. WOOT WOOT!!!!

 We were going to try to make a family event of it, especially since it's his birthday week, AND his first birthday in our family. Unfortunately I don't think finances are going to allow for plane tickets for Dean and Angela. Here's to hoping finances change in the next couple of weeks. We have a big birthday coming up!  Axel's first birthday in our family!!!!!

Axel Language Update

Last week I was looking at milestones where Axel is, and where he's not. You know what? I could CARE LESS about where he's not, because he's gained SO MUCH in the 7 months he's been part of our family. So lets take a look together, shall we?

When Axel came home to us, his language level was somewhere below 12 months. He'd never been given a way to communicate. I took custody of him on December 3rd, Just one day later on December 4th, he had figured out that these movements had meaning, and got  him stuff!  He was now imitating EVERYTHING I did, including things like scratching my nose.  You know, it might be something important I was saying! By December 6th he had 11 signs he was using on his own.

Needless to say, we've had a lot of fun watching Axel FLY through language milestones! He has gained approximately 18-36 months (his skills are scattered all over the place!) of language skills in just 7 months home. Here is typical language development for a 12-24 month old:


  • Produces considerable "jargon": puts words and sounds together into speech-like (inflected) patterns. Axel jabbers A LOT! Right now we get lots of " jdgsht skdgvguset wopstey....Kay?" Always with lots of inflection. Listening to him pretend to read is a riot. 
  • Holophrastic speech: uses one word to convey an entire thought; meaning depends on the inflection ("me" may be used to request more cookies or a desire to feed self). Later; produces two-word phrases to express a complete thought (telegraphic speech): "More cookie," "Daddy bye-bye." Axel is solidly at this place in his expressive communication. Now we're pushing him to give us 3-word phrases. Instead of just singing "play", we make him sign things like, "I want play". 
  • Follows simple directions, "Give Daddy the cup." Oh, Axel is able to follow any directions we give him as long as he understands the english word. For awhile he could only understand common phrases such as "Put your pajamas on." which is very typical for an English Language Learner. Now he can understand directions he's never heard before: "Axel, go get your sunglasses, then go to the car."
  • When asked, will point to familiar persons, animals, and toys. He's started doing this on his own now, as if to show me, "I know what all this stuff is called now!"
  • Identifies three body parts if someone names them: "Show me your nose (toe, ear)." He still sometimes mixes up "eyes" and "nose", but he can otherwise identify his ears, eyes, nose, neck, mouth, cheek, chin, hair, head, hand, fingers, foot, toes, arm, leg. Pretty good for being new to English!
  • Indicates a few desired objects and activities by name: "Bye-bye," "cookie"; verbal request is often accompanied by an insistent gesture. Axel requests certain music daily. Always "Signing Time" of course, but he can request the CD's by name, (he calls them by the picture of whatever Rachel is signing on the front of the case. LOL) He can request to watch T.V. or to go outside. Funny thing though, he thinks "outside" means the back yard, so yesterday when he was outside with me he kept signing "outside" and pointing to the back yard. LOL
  • Responds to simple questions with "yes" or "no" and appropriate head movement. Axel is just starting to do this, and it's not a firmly acquired skill yet. He will mostly just answer "yes". Having choices is something totally new to him so he's still learning that he CAN say no to something. 
  • Speech is 25 to 50 percent intelligible during this period. Axel's speech is largely unintelligible. His communication is ALL in sign. He has about 20 words he can actually say, but many of them are only understandable to those who know him. I would say his sign vocabulary is somewhere around 1,000 signs. That means his vocabulary is growing by approximately 4-5 signs per day! Right now I'm *really* pushing for sign clarity (correct, fully formed handshapes, placements and movements) as he has a tendency to be lazy with his signing, or to only sign one-handed even when he has both hands available to him. (I think this is just him playing with how signing works, because he sees me sign one-handed if my hands are full, etc.)  He'll be going to a new class in September, and he's going to learn real quick that people are going to expect him to sign correctly. 
  • Locates familiar objects on request (if child knows location of objects). Oh, we are well beyond this, as long as he knows the NAME of the object. Sometimes he has a toy that I haven't given him a sign for yet, etc. then he's kind of stuck. 
  • Acquires and uses five to fifty words; typically these are words that refer to animals, food, and toys. As I mentioned above, Axel is far beyond this number. He's somewhere around 1,000 signs. 
  • Uses gestures, such as pointing or pulling, to direct adult attention. Axel is pretty good at trying to get Dean to understand him. (Dean is just learning to sign, and Axel has long since bypassed him.)  Axel IS starting to express more frustration in his tone of voice and gestures when Dean isn't understanding him. This is where a communication device will come in handy, and I've now started working with him more on how to use the Proloquo2go program on the iPad.
  • Enjoys rhymes and songs; tries to join in. Axel totally loves this activity, something he clearly missed out on. 
  • Seems aware of reciprocal (back and forth) aspects of conversational exchanges; some turn-taking in other kinds of vocal exchanges, such as making and imitating sounds. Axel totally gets this now! Sometimes he needs to be reminded to wait his turn, which is not unusual. LOL

Headed to...?

I was doing some stuff outside when these two came traipsing past me. Wherever it was they were going was clearly very important!


Suddenly the leader said, "Follow me!" and they changed directions. 


Watch out people, she means business!


And he has a full load. Looks important!

They unloaded everything. 


Then the boss lady started dolling our directions. "You go over there, and I'll go over here."

A concert!  Right here in my front yard?? WHO KNEW?


Complete with dancers.


He wooed his audience...



While the dancers kept on dancing. 


The star of the show paused for a still shot.


It was over as suddenly as it started. It was a great concert, enjoyed by all. I hope another surprise concert happens again soon.

Family

It's not very often all my kids are here at one time. Noah and Tyler live a ways out of town, and transportation isn't the easiest for them. But Sunday was Noah's birthday so they came over for dinner, cake, and to spend some time with Angela and Axel at the carnival.







Axel's first corn dog. Yeah, you can make them at home, but they're just not the same! Axel's was still too hot so Angela (begrudgingly) shared a bite of hers. 


Angela was SO happy to see her brothers! She hadn't seen Noah in awhile so she stuck pretty close. She kicked his butt in Wii bowling, then made is girlfriend Sam ride carnival rides with her. LOL

Wednesday, July 06, 2011

Understanding Anhidrosis

Anhidrosis (also known as hypohydrosis) is the body's inability to sweat, or to sweat efficiently enough to cool itself.

When Angela was a tiny baby, we would be in the car, her riding along just fine, when all of a sudden her color would kind of change, with her cheeks going red and her mouth white, and she's start SCREAMING inconsolably. The first time it happened, she started screaming so suddenly I thought a bee had stung her or something. I quickly stripped her of all her clothing, which is when she promptly stopped crying.

Hmmmm

There was no bee, or any other bug or visible cause for her screaming. We had no idea what had happened, but the incident repeated several times that summer, and after the first couple of episodes I knew if I just removed her shirt and shoes she'd quickly calm down and be fine again.

When she was about a year old, after a round of respiratory problems, Angela was tested for Cystic Fibrosis. This test is done by collecting sweat using a special stimulation device on the skin. After the allotted time, the tech said they weren't able to collect ANY sweat for the test. The tech didn't say, "We weren't able to collect enough sweat." No, he said,  "We weren't able to collect ANY sweat. There must be something wrong with the stimulator."

A few weeks later we repeated the test, at a different children's hospital, with the exact same results. No sweat! That's when our developmental pediatrician diagnosed Angela with anhidrosis. I didn't know at the time, with toddler Angela, just how serious Anhidrosis is.

Anhidrosis is a life threatening condition because the person can suffer heat stroke very quickly, and under what, for typical people, are tolerable temperatures. For Angela, being outside in 70* weather in direct sunlight is too much. If it's shady, or a breeze is blowing she'll be ok. Once the temps hit 80*, she has to be watched VERY close because she can go from "fine" to "dishrag and ready to collapse" in a matter of minutes. Twice over the years she has passed out. SCARY!!!

Now Angela is pretty good at being able to say, "I'm hot. I need shade!" and will move herself if she's able. Unfortunately adults around her aren't always paying attention to her visible symptoms that say she's over heating, and those symptoms are there before she says something. Over the years we've learned that she just isn't able to be involved in certain sports, like Special Olympics soccer because it's just too hot for her. This year's national DS conference is in San Antonio TX, in August,  and we didn't even contemplate going because of the heat. It's a miserable place to be for a child who cannot sweat!

We've had very few nice days so far this summer here in Minnesota. The few we've had have been too hot for Angela, including 1 day over 100*, and several in the high 90's. Over this past holiday weekend, it was really hot here. We waited until evening to go to the carnival, but still she got too hot and asked to go home. A few minutes in the car's A.C. and she was much better, but still not well enough to return to the festivities. The 4th of July parade was really rough for her, as well as for Axel who is in a hard plastic vest lined with lambs wool right now!

After the miserably hot weekend I realized it was time to order Angela a  new cooling vest. They've really changed a lot in the past few years! I spent all morning shopping for a new one, using technology that best suits Angela's needs. The one I ordered was the Stacool Vest. I ordered this one because 1) it has a zipper front, allowing Angela to get in/out of it herself. 2) It is less bulky, allowing it to be worn under clothing. 3) When full loaded with cool packs it weighs about 5 lbs.


 I can't wait for it to arrive so we can get back to living the fun summer life we Minnesotan's spend all winter looking forward to!

24

This post is a couple days late. You see, it was a holiday weekend, one that holds many memories for me.

I was due with my first baby on July 4th, 1987.

On June 28th, for my 20th birthday, my sister, husband and I went fishing at a place that involved walking down a VERY steep path through the woods. Walking down the path meant also walking back up. I was HUGE. I started out the pregnancy severely underweight and gained 96 lbs over the previous 40 weeks. If I laid down felt a lot like a turtle on it's back. My sister and husband had to pull me back up that hill, which served them right for forcing me to go down it in the first place!

I started itching on the way home, and within an hour knew I'd managed to find a patch of poison ivy in the woods. OH how I itched!!!! I doused my entire body in calamine lotion to stop it, but nothing worked. Two days later, Tuesday June 30th, I went for a check up with my doctor, "What is all over you?" he asked. He laughed when I told him the story of the fishing trip and poison ivy. "Well, the good news is you're not even close yet, so you'll be fine by the time you deliver." He told me to take some benedryl. It did nothing.

On Thursday, July 2nd I felt a little funny, and by afternoon my husband and I, me still covered in calamine lotion, sat together on the couch trying to decide if what I was feeling was really contractions or not. I'd have one, then wait for an hour before there was another, then maybe 5 minutes later there would be another one. It was my first baby, and I had no idea what early contractions felt like.

Finally we decided to get out of the house for awhile to get my mind off whatever was/was not going on. We went to visit his brother and sister in law, where we could just sit and hang out, visiting around their kitchen table as we often did. My sister in law, mom to three kids, one of them delivered in the car, was convinced I was in labor.

We visited awhile, when I realized my sporadic contractions had started coming very regularly at 10 minutes apart.  The 3rd or 4th regular contraction started and I had trouble talking through it. It was just starting to subside when it started again!!! "Oh..I'm having ANOTHER one!" I said. When suddenly I felt something "pop" inside me.

Then the gush....

"Oh my god. My water just broke!" I said. I was sitting it a bucket-like seat, so I was now sitting in a puddle. "It did not!" my husband said, sure that I was just messing with him.

My experienced sister in law was the first to respond, "Oh yes it did! I can tell by the look on her face!"

My brother in law, who had delivered their second child in the car demanded, "Go...go now! I am NOT delivering another baby!"

Someone handed my husband a bunch of towels which he ran to the truck with. By the time I'd waddled out there he had them laid out...on the FLOOR of the truck! "Ummm honey? They're for the SEAT!"

He moved the towels to the seat, and we were on our way. "Slow down! This baby is not going to fall out of me, but we do need to get there alive!" I reminded him.

Once we got to the hospital I was checked, and not even a full centimeter dilated. I would have a long time to wait. We walked, we talked, we walked some more.

Finally, on July 3rd, 1987 at 6:03 a.m. Noah Allen entered the world. My first born, changing my life forever. On July 4th I watched the fireworks from the window of my hospital room. I looked into the eyes of my beautiful child and realized it would never be just me anymore. I was now responsible for someone else. This little person was 100% dependent on me, and I was ready for him! For the first time in my young life, I felt like I had a purpose! To raise this child to be the best that he could be.

Happy 24th birthday Noah! I love you, and I'm so glad God chose me to be your mother!

Tuesday, July 05, 2011

Resistant to Change and tattling

This morning I moved our dining room table. It's in the same place, I just turned it the way it usually is to allow more walking space. While I was moving it, Axel was watching me while eating his breakfast at the kitchen table. About an hour later his home-bound teacher came and they spent two hours doing his school work at the table I'd just moved.

Axel is often pretty quiet with me during the day. He chatters away for his speech therapist, OT and for his homebound teacher. But with me, he usually only talks when he wants something from me.

Papa came home at 5:00, and as usual Axel went running for the door, chattering away, and signing "table...table" over and over again. We didn't know what he was talking about except that Dean had just set his computer bag on the kitchen table. Whatever it was, it was VERY important, because "table" was signed with MUCH jabbering and voice inflection. It sounded something like this, "Bydheafe shtveget sheuggqwrtvb djvikesyev.... Kay?"

Then Axel went to the dining room table, pulled all the chairs out, and tried to move the table back to where it had been before I moved it.

He was tattling on me.

In Axel's way he was saying, "Papa! Mama moved the dining room table and that's not ok! I'm moving it BACK where it's supposed to be!"

So now we know. Axel doesn't like change.

Sunday, July 03, 2011

Selective Attention

Watch this video. Count how many times the team in white passes the ball.





It's amazing what you don't see when you're not looking for it.

Saturday, July 02, 2011

Philly Update

On Weds Axel and I boarded a plane for Philadelphia again. This time the plane actually took off! Going through the airport was really interesting. We had a backpack, a roller back, the wheelchair we had to bring back to Shriners (which Axel was sitting in since he needs to be in a wheelchair for long walks in big crowds, like around the airport) and also a walker that needed to go back as well. All with one mom pushing or pulling the various items.

The first step is going through security. I am becoming less and less patient with TSA. They're either a pain in the neck and useless, or TOO helpful, which is also a pain. LOL I wish there were a happy medium! Having been on 23 flights in the past 15 months, I have become an expert at packing to go through security checkpoints. I wear slip-on shoes, no belts (learned that mistake a year ago. LOL) no jewelry, nothing in my pockets, and NO liquids if I can help it.

So Axel and I get to security at the Minneapolis airport, and I quickly disperse the items that need to go through the xray machine. For Axel and I, that meant 4 bins, plus the walker (it fits through the machine!) and a backpack. Then they take Axel through, and I have to go through the metal detector. I learned after our trip on May to ask if they could please wait to check Axel until I had collected my things and could focus all my attention there instead of trying to watch him AND my belongings at the same time. They said sure! In the seconds it took me to ask that, someone (I think a TSA agent) had unfolded the walker for Axel to use. THANK YOU! Except that we don't need it since he's in a wheelchair AND I don't know how to unfold it. LOL Someone else had shifted my things around, moving all the tubs into one pile, except that my laptop was in one of them...on the bottom...making it look empty. Anyway, I quickly shoved things into their appropriate places and lugged everything over to where Axel and a TSA agent were waiting. They checked him over, I put his shoes back on, and we were on our way.

We arrived to our gate at.the.far.end.of.the.airport with 30 minutes to spare before boarding. SCORE!!! I was sitting there sweating to death from the long walk, when I had a thought. "Did I get the laptop?" As I though that, an announcement came over the loud speaker. "Would the traveler who left a laptop at security station D please return for it." I unzipped the backpack...nope. No laptop.

Crap!

I asked the gate agent if I could leave the roller bag and backpack there while I RAN back to the other end of the airport. No dice!!!! Axel and I made the trip VERY fast, and arrived back at the gate, dripping with sweat, just as they were ready to pre-board Axel and I.

My good friend Colleen picked us up at the airport. I cannot thank her enough for the immense amount of help she's been to us the three times we've been to Philly so far. From picking us up at the airport to driving us to Ronald McDonald house. This time we stayed with her, and she dropped us off at the clinic Thursday morning on her way to work, THEN had to drop her little guy Nolan off and get herself to work. She has really gone out of her way for us, and we can't thank her enough!

So the clinic visit: It was GREAT!!! I really didn't have a way to explain to Axel where we were going on this trip. It was really cute when we pulled up in front of the clinic, and he touched his halo and started jabbering. I'm sure he thought he was here for another traumatic event, and that we'd duped him into it!

 First, we checked in, and ran into Axel's surgeon, Dr. Samdani. He was really pleased to see how well Axel is getting around! Next went to the physical therapy department and got rid of the bulky wheelchair and walker. We have another wheelchair we had left with them in May that we'd be bringing home with us. It's a little too small for Axel now (it fit him just right in February!) but was good enough to get us home. Still, it was really nice to not have to be dragging the bulky stuff around!

Next we went to Xray where Axel had new pictures taken of his neck. I was anxious to see the new bone growth!

That done, we headed to the clinic to meet up with Axel's surgical team. They were all thrilled to see how well Axel was doing, AND how wonderful his pins look! You may remember that a few weeks ago Axel's pins were badly infected. I have to clarify something here. These "pins" are actually 1/4 inch SCREWS that are screwed 1/8 inch into Axel's skull,  and each screw has 8 lbs per square inch on the skull.  They NEVER come out except when the neurosurgeon removes them to take the halo off. That means Axel has not been able to have a bath since his surgery back on May 16th. Anyway, the pins now look great. A combination of 10 days of antibiotics (which ended a couple weeks ago) along with a new cleaning regimen, and things are looking perfect.

So, here is a picture of the computer screen with Axel's xrays displayed on it (you can click on it to make it bigger.) :


See  how long those screws are in his neck? BLECH! See the balls at the head end of the screws? That is actually the bone graft. If you blow it up big, you can see there are shadows in it, and on the picture on the left you can see there are clearly balls of bone. When we go back in 6 weeks they should be grown together into one solid piece of bone.

And, the best news of all? When we go back in six weeks, Axel will be getting his halo off!!!

Actually, if he wasn't head banging in his sleep, he would have gotten it off at this visit, but since he's so rough on his body it's really not advisable right now. That's ok! We're all for erring on the side of caution! When he gets the halo off, he will have no muscle strength to hold up his head, so he'll be in a neck brace just like the one he had before surgery. This will stay on for about another three months.

Axel was pretty relieved to be leaving the clinic without having suffered one single painful event! I can't wait until mid August when I can tell him that he's going to get that thing off! The removal itself is a quick procedure, taking just a few minutes. Even so he will have an I.V. placed, and be sedated for the removal so he....AND THE MOM... are not so traumatized. I've heard from good friends that the halo removal is NOT FUN, so I'm glad they said he'd be sedated.

I love this picture of Axel looking at his xrays on the computer monitor. I don't remember who this guy is. He's not Axel's surgeon, but he participated in the surgery. He's a very nice man, and had lots of questions for me about how I'm caring for Axel's pins, etc. Also, they haven't gotten many kids with DS who have active impingement of their spinal cord at the time of surgery, so he wanted to know if they could use Axel's xrays for teaching purposes.


So, if we're really lucky, we'll have no reason to contact Axel's surgeon before our appointment in August. And if we get our way, we'll have that halo off before Axel's birthday on August 13th. What a present for his first birthday in America!!!!