Blogging about life in Minnesota, raising our six 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!"

Tuesday, May 31, 2011

Does Your Infant Require Thickened Liquids?

Today he FDA issued a warning to parents and physicians to NOT give "SimplyThick" to infants born before 37 weeks. Please GO HERE to read the full alert.

From the website:

"Do not feed the thickening product called SimplyThick to infants born before 37 weeks because it may cause a life-threatening condition.
This advice to parents, caregivers, and health care providers from the Food and Drug Administration (FDA) is based on reports of infants with necrotizing enterocolitis (NEC) in which tissue in the intestines becomes inflamed and dies....."

Monday, May 30, 2011

Announcement from Serbia

Yesterday I told you there would be news out of Serbia today.'s TODAY! LOL

On April 10th, 2010 I met Ianna. (not her real name)  I was introduced to her by the corrupt facilitator who was also the doctor at the facility. The facilitator begged my companion and I to advocate for Ianna, and to help find a family for her before she was transferred to the institution. The child who Dean and I decided to pursue, only to find she was not legally available for adoption. She now sits in an institution for older disabled children in Serbia, desperately in need of medical attention.

Together with Ianna was this little guy. This is Srecko (pronounced Srechko), and he was Ianna's BEST friend in the orphanage. He was like a brother to her, as they were in the same group and did everything together. Nearly every picture we received of Ianna, or that my friend Tammy received of Srecko had both of them in it. We were told Srecko often looked out for Ianna.
This child was perhaps one of the brightest lights of hope in the entire facility. He stood OUT! He was so happy. He asked, "Are you my new mama? Did you come to take me to America?" You see, Srecko had been told he had a new Mama and Tata coming, and he hoped we were them. He had waited a very long time, he was ready!

And then a mess happened, and everything came to a screeching halt. It nearly completely destroyed the friendship Tammy and I had.  But God is all knowing, and he knew what needed to happen. I thanked Him profusely when Tammy and I were able to pick up where we left off.

Finally, in recent weeks,  the Adoption Unit in Serbia was able to straighten out some things regarding Srecko's registration for International adoption, and a week ago his Mama and Tata were told to the time had FINALLY COME! 500+ days after committing to him, Srecko FINALLY met his Mama and Papa today!!!!

My heart is doing backflips today. For Tammy and her husband for sticking it out and seeing God's plan to completion, no matter what the hardships were. For Srecko who will finally know the love of a FAMILY, and will never ever ever know the fear of transfer to a facility for older children.

But my heart also breaks for one little girl. My Ianna. How many times Tammy and I talked of how wonderful it would be for both Srecko and Ianna to find their way home, so they could continue to see each other since we live relatively close to one another. She lost her best friend when she was transferred. Ianna...alone...rips my heart to pieces.

But today is a joyous day for Srecko, and I couldn't be happier for him. There was other news out of Serbia today too, which I'm not yet at liberty to share, but when I received it at 6:30 this morning, well let me just say I was walking on clouds. I wish I could say that it was about Ianna, but it was not. But it gave me hope, and I will never give up on her. Ever.

Thank you Lord for all your blessings given today! Now, if you'd like to follow Srecko's story, please visit my friend Tammy's blog and help them welcome their new son home in just a few days!

Corruption in the World

Corruption, and the practice of accepting bribes to "get things done" is a problem all over the world, but my attention is focused on Eastern Europe and the Balkan region, and corruption related to international adoption practices.

Being post Communist countries, it is difficult for people to get past the the concept that they will need to pay someone in order to get things done in a timely manner, and for officials to expect they'll be offered bribes in order to perform their duties expediently. It is no surprise that corruption in adoption in these areas is no different. Bribes are paid all along the way in the adoption process to get steps completed quickly: a quick medical appointment, a passport, SDA appointments, even to have the files of certain children presented to families when accepting a "blind" referral.

Transparency International is one organization who has been studying the practice of bribery around the world, and their reports get sent back to the UN and are also taken into consideration for countries that are making steps to join the European Union.

While adoption is at the bottom of the list as far as government concerns go in Eastern European countries, Americans participating in international adoptions and working with facilitators known to be corrupt just perpetuates the problem in that area of the system.  The bribes paid by facilitators to officials is what causes them to, in turn, extort money from adoptive families. I've said it before in a previous post, it's easy for a corrupt facilitator to see who the easy targets are when a family's financial information is put into their hands.

There ARE facilitators who are ethical, and work without paying bribes to government officials or trying to extort money from adoptive families. It's a shame that some agencies and organizations choose speed and the ability to get more information about children over ethical practices. This puts the safety, security and financial welfare of unsuspecting families at risk.

Adoption related agencies and organizations in the U.S. need to act when they learn of corrupt practices in their adoption programs.

You can visit the Transparency International website and do a country specific search to read the reports that have been completed.

*edited to add*
I forgot to mention that if you dig around on the TI website, you will find that they have hotlines to call if you're in country and feel you've been a victim of corruption. I'll post some Eastern European country specific information here:


Transparency Serbia / Transparentnost Srbija

Bulevar Despota Stefana 36/1
11000 Belgrade


Contact Person(s):
Mr Nemanja Nenadic
Executive Director

Phone :+381 (0) 11 303 38 27
Fax :+381 (0) 11 322 81 96


NGO Creative Union TORO

Egorova 17, Office 4,
Kirovograd, Ukraine 25005

Contact Person(s):
Mr Oleksii Khmara
Phone :+38 0522 27 23 15
Fax :+38 0522 27 27 54

Transparency International Bulgaria

3 Bistriza Str., 4th Floor
Sofia 1000


Contact Person(s):
Dr Ognyan Minchev
Phone :+359-2-986 7920
Fax :+359-2-986 7713

Ms Diana Kovatcheva
Executive Director
Phone :+359-2-986 7920
Fax :+359-2-986 7713


Center for Anti-Corruption Research and Initiative Transparency International Russia

Nikoloyamskaya ul. 6
109189 Moscow


Contact Person(s):
Mrs Elena A. Panfilova
Phone/Fax :+7-495-915 0019
Mobile+7 916 675 8429

Sunday, May 29, 2011


This video was produced by students at the University of St. Thomas here in MN. I am SO PROUD of the awesome job they did! I think every middle school, high school and college student in America should watch this.

Angela did her own message a couple years ago. It was even shown to some of the students at her school. Still that word is heard being thrown around the halls of her school for her, and all of her classmates with intellectual disabilities to listen to. Yet, if the "n" word were heard, or another racial slur, swift action would be taken. Maybe schools will start consider this the same type of slur.

Eastern European Adoption: Got a problem?

It seems that in the community of Special Needs International Adoption, everyone raves about their amazing experiences (ours certainly was!) but they are also afraid to speak up if they've had a problem! Someone has managed to put the fear into them that if they speak up, whole adoption programs will come crashing down! Guess what? I spoke up, and the Serbian adoption program is now better than ever, and even less expensive than it was.

Anyway, there is a movie that came out years ago that happens to be adoption related called, "Secrets and Lies". While that movie deals with secrets within a family, I really like the title, because it is exactly what is happening in the close-knit international adoption community of families adopting kids with special needs!

I think it's important to remember that secrets feed secrets. Keeping quiet about what happened to you while in country or stateside only allows for the same thing to happen to the family coming behind you. Don't you wish the family BEFORE you who had a problem had said something?

It's also important to remember that just because you didn't have a problem, doesn't mean others didn't. Every adoption experience is different, even when adopting from the same country, or using the same facilitator, agency or organization.

That said, I've been hearing an awful lot from the community about common practice on countries other than where my adoption occurred, yet still people are afraid to speak up. They've been told if they do they can bring an entire program down. If that's the case, it's a pretty weak program to begin with, with problems that should be addressed instead of just walked away from so the program can continue. I LOVE seeing all the kids coming home, I HATE watching families be knowing put into the jaws of wolves in sheep clothing. So I've created a place where you can feel free to tell your story without fear of being ostracized. You can find it by clicking HERE and visiting the TEEA group. Truth in Eastern European Adoption.

I am SO very excited

There is special news coming out of Serbia tomorrow! I wish I could say more, but I'm not the one allowed to spill the beans so I have to wait. UGH!

Saturday, May 28, 2011

A Day in the Life

Today was the first warm, pleasant day in ages. Ok, it was only 1/2 a day because a small but severe storm blew in late afternoon. Still we were able to mow the jungle back yard that needed before we left for Philadelphia but it was just too wet. So it waited another two weeks, which we really debated paying someone to bale the stuff!

We were still able to get some play time in. Axel helped me plant some flowers, but I forgot to take pictures. It was pretty funny, because he really wasn't interested in having that dirt on his fingers. He did it though. Cuz he's a trooper.

When that was done, someone needed to clean up the mess! Axel LOVED the broom, even if it meant a near heart attack for both Dean and I. What I loved is the REAL Axel is back, giggling away! I just love his giggle. We have no idea exactly what he's giggling about, but this is his "trouble" giggle, which means in HIS mind he's doing something potentially naughty. LOL I think he's trying to bug Angela in some way, but the rest of us were clearly oblivious to it. I don't know if you can tell in the video, but there are a couple times when he starts tipping backward. Then, just two seconds after I stopped recording, he went stumbling foward several feet, with me lunging from behind hoping to get hold of his shirt. (you know, the velcro one that would have given way!) Dean? Didn't even flinch. Yeah, that was the end of sweeping.

Then came snack time, and chillax'in! Angela is just getting over yet another sinus infection (I swear this is like the 10th...or 100th... she's had since November!) so her face is kind of a mess. But hey, she was OUTSIDE, which is very difficult to get this teenager to do sometimes!

How about some soccer? After the experience with the broom earlier, I wasn't about to let Axel mess around with running and stuff. Nope, not till that halo comes off! Don't you just love his laugh? He's trying to get the dogs with the ball. LOL But Angela and Axel LOVE kicking the ball with each other, so Axel wasn't about to let a little halo stop him.

Weather Axel realized it or not, he was tired after all this. After all, he did just have major surgery less than two weeks ago! How well I remember overdoing things myself! It was time for mom to help the little boy find a pillow and a blanket, and settle in for a nap. I was *really* tempted to join him, but a storm was coming in and there were a couple things to finish outside. I managed to get the strawberry bed weeded and play a little soccer with Angela before the tornado sirens went off.

When the day was over, it was time for one of our new evening rituals. Actually, this happens twice a day now. Morning and night, we have to clean Axel's pins. Dean has yet to do this, because he says it creeps him out. Really? What if it creeped ME out too? Then who would do it? Something tells me it's time for Dean to clean some pins. Anyway, Axel gets really chatty while we're doing this and I've been trying to catch him on video, but Mr. Smarty Pants stops talking when he knows the camera is going. Tonight was no different, but I still tricked him to talking a little bit.

So that's a day in our life. What did you do today? Do tell!

Parking Wars...for REAL!

Tonight Dean and I were watching a fun show. "Parking Wars". Have you ever seen it? We get a real kick  out of it, probably because it's not us having the problems. The episodes are usually filmed in Philadelphia, which we're quite interested in these days.

Tonight's episode had a segment about "No standing" zones. HUH? Clearly we are small town here in Minnesota, because I have never heard of any such thing except in front of an embassy. (don't try to take pictures there matter how cool the ornate wrought iron fence is. Ahem!)

So I turned to my trusty friend google, and looked it up. I found one of the funniest..albiet posts I've ever read. I think you might enjoy it, and, if you live in Minnesota you'll be glad. We're simple folk here, I think.

Axel Loves Rachel

*Note* For those who are new to this blog, Axel was adopted from Serbia on December 9th, 2010. When I took custody of him on December 3rd he was completely non-verbal and had no way to communicate. Nothing. At 10 years old he could not tell someone he wanted a drink, or to eat, or that he liked one food over another. He was communication starved!

I started signing with Axel the day I took custody of him, and within the first 24 hours he learned that he could tell me he wanted a drink, and he could even choose between apple or grape juice. Since Axel discovered the joy of communication, his world has blossomed! Along with being a former ASL interpreter, while still in Serbia I introduced Axel to Signing Time, which was the beginning of his love affair with Rachel!
So go back to Thursday, May 19th, when I got an email from Axel's teacher saying there was a Signing Time event in our area. Rachel, LIVE, for the kids to enjoy. She was coming Friday, May 27th.

Awwww man! Axel and I were scheduled to fly home that day and there was just no way I could turn around from a day of traveling, and drag him to a concert. I was bummed for Axel, even though he didn't know he would be missing anything.

But then we came home a week early! But I still couldn't order tickets yet. I mean, he just had major surgery, I really needed to see how he was feeling. Then by Tuesday I knew that by Friday he'd be ok. I bought our tickets. I WAS EXCITED! I love being able to surprise my kids with something they love!

But the boy couldn't go shirtless! I took Axel out earlier in the day and bought some cheap t-shirts at Target that I could attempt to modify with scissors and velcro. I thought this "American" shirt was very appropriate. ;-) Axel loved helping me with this project, and always made sure I had scissors, or the measuring tape, or something in my hand before I needed it. LOL (Later today we have three more shirts to do. ) Look at that smile! He was happy to have clothes too.

Then we got in the car to drive to our special destination. Axel had no idea where we were going, and I don't know that he would have understood the English if I'd told him. He was just happy to be in the car. For those of you who know the cities, I had to make it from my place, all the way across the city to Maple Grove in rush hour HOLIDAY traffic. You know the "up north" mass exodus of Memorial weekend?? UGH! The concert was to start at 6:00, but we had general admission seats so I wanted to be there by 5:00. We left the house at 3:30 and made it at 5:10. YUCK driving!

So we get in there and we're the first ones in line. Axel had a program in his hands, holding it in front of his face. If he'd moved it for a second he would have caught sight of Rachel and Leah giving those who'd purchased VIP tickets their pre-show and meet and greet. LOL But he didn't...he just thought I'd given him something with signing time stuff on it.

Then someone came out from the sactuary (it was at a church) and saw that Axel was in his wheelchair. She took down our names and arranged for wheelchair seating. We were allowed to go in a few minutes ahead of the crowd. So far we were the only wheelchair family there. Imagine my surprise to find our seats right smack front and center!!!!! Oh, I was dying to see Axel's expression when Rachel finally came out! For now he was just thrilled to see all the Signing Time logos. LOL

And then the Singing Time theme song started, and out came RACHEL!!!! I turned on my video to catch Axel's face. He was EXPRESSIONLESS! Why? Because he was in SHOCK! You mean Rachel is REAL????

Look how how old Leah is now! She's 14!!! Rachel said Leah is starting to get a little too old for this stuff. LOL But Leah was a good sport. Did you know Signing Time has been around for 10 years? I remember when it started being annoyed and skeptical of it, because any signing videos I'd seen for kids at that point had a lot of regional signs (signs used only in certain parts of the country) or were really Signed English. But Signing Time is different! Although there are a few regional signs once in awhile, even though Rachel speaks in English, she signs in ASL word order. This is a tough skill to learn (one that I used to be good at, by the way. ;-)

The first song that she did was the Rainbow Song. She picked Axel to sign "red", and up to the state he went. Notice he's still not smiling??? LOL At the end of the song Leah gave him him a bracelet and tattoo. OH...Axel was SO HAPPY Leah TOUCHED HIM! Also, during the video he starts signing "Hopkins" (the frog) because he REALLY wanted to see Hopkins! LOL

Ok, I don't know these girls, but maybe their mother will stumble across my blog, because these are just great pictures of her girls on stage!

Also, for those who have little ones who will be working on potty training soon, Rachel has a special project in the works! She has an APP that will be coming out, where you can play a little video (or audio, not sure) of Rachel congratulating your child on going potty on the big boy/girl potty, or wearing big kid underwear, and stuff like that. They don't know when it will be released yet, but watch for it! 

When the show was done, they told everyone to file around and make a line for the meet and greet. I had Axel out of his chair at that point (he was actually in the adaptive stroller, which has him sitting a little funny, which causes the vest from the halo to pinch his legs.) I was going to load him up in the chair again and the woman in charge said, "No! The kids in chairs (there were 3 of us now) can stay right there. Rachel will do a meet and greet with them right here." So we go to take his picture, and do you notice he's STILL not smiling??? He's totally blank faced! He was just completely STUNNED by this whole event. Of course, as soon as we got in the car he's laughing and chattering about Rachel and Leah, and Hopkins, and I heard "Signing Time" 5,000 times from the back seat! HA!!!!

After the show I spoke with the woman who put this all together. She did it all ALONE! There was no advertising, only word of mouth. This was a lot to put together! I volunteered to help her with next year, and while I'm at it, I might as well become a Signing Time Instructor, huh? Besides...Rachel said there is a convention in Vegas in July. LOL

Friday, May 27, 2011


Axel has been shirtless for two weeks. Look who has a new shirt to wear, just in time for our big night!

The Big Surprise

How fitting that today Axel woke up full of smiles and energy. He's now sitting in his room, singing along to a Signing Time CD, just smiling away. He feels GREAT! He is walking well (so I'll be taking that walker back to Shriners in June!) and is off all pain meds.

So, later today I'm taking him out for a BIG surprise! I'm almost as excited to see his face as he is going to be to get the surprise.

Thursday, May 26, 2011

What CBS has to say

What CBS had to say about the Glee PSA:

I Found the Nest!

Ok, I can't take the credit for finding it. My new bloggy friend Cindy, and photography IDOL pointed out to me in my previous post that I was looking right AT IT!!! So, I watched.....

And look who came back to keep building the nest! (Click on the pictures to view them full size.) It doesn't look like a nest yet, since it's still under construction. This nest is about 20 feet away from my living room window, and about 10 feet higher than me when I take the picture. I wonder if that other zoom lens I have sitting in a box would get me closer?

Look Who's Back!

There are lots of families returning to the area this year. Some of them reside in my back yard. The squirrel family lives right outside my kitchen window. The first brood of babies appeared out of the nest while I was in Serbia earlier this month, so I missed them. Ummm.. it looks like there will be more babies for me to see in a few weeks. 

And, my hummingbirds are back!!! I'm still trying to follow this bird to the nest. I know it's around somewhere, because the favorite perch is never very far away. He lands here about every 5 minutes throughout the day. I took these through the living room window so they're not very clear. Looks like I'm going to need to hang out on the porch roof this summer. Funny, right after he left from the photo shoot, he went to buzz the squirrels pictured above. They must be close to the nest!
Female RubyThroated hummingbird building her nest about 30 feet from the living room window.

2 1/2 inch humming bird nest about 30 feet from the house.
I have the feeders out now, and plants to attract the birds as well. I saw an Oriole the other day so maybe I'll be seeing more of them too. And, I just ordered some more feeders today because the humming birds don't really like to share, and last year I had 3 or 4 pairs!


We've been trying to get insurance to cover a bed rail for Axel. The regular kid ones, that slip under the  mattress, do not seem sturdy enough, or heavy enough, to actually stop him if Axel's rolling. Insurance said it's not "medically necessary", so they won't cover it. (if not medically necessary, why do medical supply stores carry them????) Apparently you're not able to roll around with a halo on.

So this morning this is how I found him. Tell me how in the WORLD does a person sleep like this???? (the red you see in the bottom of the picture is the kids desk I have pushed up against the bed for  now. But it's VERY light.)

Wednesday, May 25, 2011

Finding the Balance

Finding the Balance - Axel's balance that is! He's working hard on getting mobile again. He can now walk independently, but still needs someone RIGHT there should he loose his center of balance and start tipping over. This is especially true with cornering! LOL

Two days ago he sat in the little play chair and drew on the easel. This is the lowest he's gotten to the floor since his hip is still pretty sore. It's also the first time he's drawn a face without someone getting him started with a circle. After I put the camera away he added ears, hair, legs and arms. Gotta love the unibrow! LOL

Yesterday he played the Gone Fishing. He LOVES this game! It's pretty funny to watch his mouth as he's catching the fish. Anyway, having this game has been helpful in getting him to stand for longer periods of time, all while working on balancing and reaching. Even though I stand right there with him all makes Dean very nervous though. (if you watch closely, he signs the color of the fish he's going to catch next. Everything he does is always very purposeful.)

Today was a first: First time playing on the floor. He actually got there pretty easily considering how sore his hip has been, but had a difficult time getting up OFF the floor. We had to motor plan this together. ;-) Anyway, first he built his usual tower of blocks, then took it all apart and made a little more complicated tower. He has really missed his blocks! I think when his birthday rolls around real legos are in order! (Good thing we have the Lego store at the Mall of America just 10 minutes away.)

As you can see, he plays very carefully with his blocks. He's very intentional with them and when he's building something more than just a tower, he puts a lot of thought into which block he's going to use next.

Tuesday, May 24, 2011

A very short period of time

We have decisions to make, with a very short period of time to make them, only we don't even know the choices yet! UGH! It is a sticky.

Monday, May 23, 2011

Halo Clothes

Part of my detailed halo posts is for other parents who are going to be dealing with the same issues we are now facing. I've only been able to find a few websites. The people I know personally who've had to do the fusion surgery for their kids with DS, thier children are much younger and smaller, so we have a little different situation.  Each of our kids have their own unique circumstances to deal with.

Ok, we have tried a couple different options for shirts for Axel and the DO NOT work without alterations being made to them. Because of the width and positioning of the uprights, button-up shirts don't work. The one he wore home we cut at the shoulder and it was ripped to shreds by the bolts by the time we arrived in Minneapolis.

There are a few websites I've found that have patterns for altering shirts. One is by Capital Health, and another more detailed one by the University of Iowa Department of Orthopedics.  And since it's summer time, muscle shirts cut at the top seam with velcro placed there would work as well.

I am off to find a sewing machine, so in my spare time I can alter some shirts! LOL

My New Workout Routine

I have a new workout routine, and it is called "Axel in a Halo".  Here's how it goes:

First, get bowl full of bath water for Axel, and set up the bath station in his bedroom.

The next excercise is getting Axel out of bed. (When he's soaking wet because he slept twelve hours. Could be the valium we gave him last night?? LOL)  First, roll the child to his side, then lift him to a sitting position while simultaneously getting his feet over the edge of the bed. Axel knows what is supposed to happen during this excercise, and is getting better and pushing himself up off the bed. Next step is to scoot him forward and to a standing position.

Next, remove the soaked pajama pants. This involves Axel hanging onto my shoulders while I bend down to get the wet pants off. Only sometimes forgets to hang on and starts signing Signing Time songs (which means he's using his hands to sign instead of hang on!) and since he's so top heavy and still VERY off balance, he tips over. Tipping over with the halo on is BAD.

Now move him to the bathroom. When he first gets up in the morning his hip is stiff and painful, but it gets better within a couple of hours. Other than that he is now able to support his weight, he just has no balance, nor sense of space so knocking the halo on door frames is always an issue.

Getting him on the toilet involves lifting him onto the toilet. This morning was a little more tricky because I needed to leave him somewhere while I ran to get his bed ready for a sponge bath. He seemed to be balancing o.k. while on the toilet, but I wasn't 100% sure he wouldn't break out in song again. I stressed to him in my "this is very important" voice to "hang on tight!", and ran to get his bed ready. (stip off wet sheet and blankets, lay out large towel on the bed) It's just barely out of line of sight from the bathroom.

Pottying done, time to walk him back to the bed, sit him down, lay him down on his side, then on his back. Get him all washed up. NO getting the vest wet allowed. Thankfully this bedwetting incident didn't get pee on it. This is going to be a long several months! Washed off the top of his head too. Get underwear and new pajama pants on him, but not pulled up. Jeans are not comfortable for him yet since he has a large incision on the back of his hip. Which got wet, by the way.

Time to roll him over to his side again, sit up, then off the bed, and repeat the balancing act while I pull up his pants. I don't think he'll ever be able to do that himself as he'll tip right over!

Now we walk to the dining room. I have a choice of a kitchen chair which has a wood seat, or a dining room chair which is fabric. The dining room chairs have a knob on top which kind of catch the halo should he start to tip over. I get his breakfast (blueberry pancakes today!) and get it set so he can eat himself. My friend is picking up a tray and a cup I can use a straw with so he can be independent in this area.

One he's done eating, it's time to clean the halo pins. This is the gross part of the job. There are eight pins, and it takes four q-tips (the hospital kind) per pin, twice a day. That's 100 qtips per day. Axel does NOT like this part of the day. He cries real tears most of the time. The pin sites are red at all, and do not appear sore. I think he just doesn't like that he can't see what I'm doing. His job is to hold a tissue and catch any drips so they don't go in his eyes. He takes this job very seriously! LOL

Now I can move him to the couch to watch T.V. for a bit. (I'll be glad when his balance improves enough that he can play on the floor a bit!)

Total time elapsed: 90 minutes.

I'm ready for a nap already, except that I'm looking around at all the unpacking that needs to be done. LOL

Sunday, May 22, 2011


We are HOME and even more importantly, we are NAPPED! Well, Axel and I are anyway. ;-)

I have nothing but high praises to God for not only getting us all on the same flight, but getting Axel and I in first class! God is So GOOD!

Axel cried about 1/2 the flight. Sobbing tears kind of crying, which is very unlike him. He was grabbing his hip, and it was hard to keep him sitting in the seat because he kept arching his back, making his butt slide out from underneath him. My guess his he was having spasms in his hip, making him absolutely miserable. We had given him valium right before the flight, which finally kicked in about 3/4 of the way. So, by the time we got home he was quite goofy...headed the direction of naughty...which landed him in bed for a nap.

That nap had us making a list of things we need. #1 being a bedrail, #2 is a wedge for his bed. We put him on pillows and stuff for his nap put he's just not very comfortable.

Here's a video of him eating dinner tonight. As you can see, his field of vision is very limited now. (it will improve a little bit as his pain lessons and he learns to turn his body) But looking down is not doable. If his OT is reading this, I need something better than this cake pan to raise up his plate, and maybe some dycem to keep his plate in place better?

So, we are on to new things now. This week will be spent improving his balance and increasing his ability to walk independently. It will come just takes time. The bigger they are, the more difficult it is to overcome the top-heaviness created by the halo. Axel's surgeon told us that adults sometimes take up to two weeks to even be upright, and a couple more to walk independently without the aid of a person or a walker. I have a video of him walking yesterday, but the nurse didn't see that I was recording (something about holding the camera up in front of my face made it tough to see this) and started asking me questions about our insurance.

Saturday, May 21, 2011

Logistical planning

After going over what it would take to pack up our stuff, get to the hospital, discharge Axel, re-load all our luggage in a different cab, then get to the airport, all before 6:30 a.m. we changed plans.

We just busted out of the hospital! Axel is now back at Ronald McDonald house with us, and we'll leave for the airport from here in the morning. WOOT WOOT!

Friday, May 20, 2011


I'm beat.

Downright beat. And I didn't even take a single picture or video today!

We arrived at the hospital at 8:00, just in time to give Axel breakfast and get him up to use the bathroom. Then the resident came in to make the necessary adjustments to Axel's halo. That needed to wait until he was able to stand and sit upright for a couple minutes at a time.

Then it was time for PT, and we made a loop of the 5th floor again. (that's 280 feet for anyone who wants to know.)  Then we brought him down to the therapy play area where we could practice stepping up and down curbs since we will have to maneuver two steps to get in and out of our house. Axel was a little quiet during this time, which is about our only indicator that he's in pain. We brought him back to bed, and it was time for lunch so he ate and then took a rest.

When he woke up the PT was back. Our biggest concern is my back since I messed it up doing the very first transfer with him back on Tuesday. When we go home on Friday next week, it will be me alone with Axel, having to get in and out of cabs, in and out of the plane, etc. That, and I'll be alone with him every day so I need to be able to do transfers in and out of bed as well. There is a lot, and with the  halo on he weighs about 70 lbs.

The therapy play area has real car (though it's a two door.) and we practiced doing transfers in and out of the car. I was able to do it ok, but there is a lot to think about, like the fact the bars from the halo hit the roof of the car as he's getting in if I don't bend him over at exactly the right time, while at the same time making sure his butt is on the seat, but that he's leaned back far enough to REACH the seat with his butt!

 We transferred in and out of the car twice, and while I was buckling him back in the wheelchair, I lost it. I started crying and I didn't even know why. I think it was the combination of being tired, the thought that I'll be completely on my own doing this, and just all there is to think about when traveling with a child in general, then add in that I'll have Axel, luggage, wheelchair transfers, his pain, what if he has to go to the bathroom on the plane, etc. etc. and it was all just too much for that one moment. I hate when I'm crying and I can't even talk well enough to explain WHY I'm crying because really, I DON'T KNOW! And I asked God to just make me comfortable with all of this because my kid is depending upon me to manage it all safely....ALONE!

Half hour later, we were back in Axel's room when his surgeon came in to do rounds. He looked at Axel's surgical site and removed the bandages from his hip. It was the first time we've been able to see the hip wound. It looked great, and he said Axel is healing FAR faster than expected. He didn't see any reason for us to visit the clinic next Thursday unless there was some unusual problem, so.....we are free to FLY HOME! In a whirlwind of activity, with about five different people working at once, we were able to get my and Axel's flights changed so we can fly home with Dean and Angela on Sunday! We were able to get prescriptions for pain meds sorted out and all the other little details. The only one we're left to figure out is the wheelchair which....please God!....will be taken care of tomorrow!

So, the plan is to pack up everything tomorrow night, then arrive at the hospital about 4:30 Sunday morning, get him discharged out (paperwork is going to be prepared Saturday night) and be to the airport by 6:30 for our 8:00 a.m. flight. This puts us on the ground at home at 10:30 a.m.

Thank you God, for arranging all of this! I know it's because it really is too much for just one person to get him home by plane, and God knew I really needed Dean's support in doing it. Dean and I are a great team. Several times today staff told us how well we work together and communicate with each other. I know part of their job is to encourage us as parents, but it worked. It really helps that we have God guiding us, and an amazing little boy who we love dearly!

The end of a very long day

Just like today, this  update may be long, but it ends good. ;-)

I'm not really sure where "Yesterday" ended and "Today" started. I guess logically one would say midnight, but somehow it was all just one long day. Since we are really pushing fluids into Axel right now, our schedule completely revolves upon the next time he needs to get to the bathroom, and weather or not he needs to poop. Since getting him to the bathroom is back-breaking work, it's important to get him up and moving on his own as quickly as possible without pushing him too fast. It's a very fine line to dance! Needless to say, sleeping at the hospital isn't really conducive to parental rest when it takes three people to get him to the toilet, and it includes much screaming and yelling.

I wish I had a video of a bathroom run, but I can't do that and be one of the three people it takes to get him there. The halo is only supposed to be about 7 lbs, but since it throws off the center of balance, making the person top heavy, you're also supporting their entire upper body which is FORCING itself forward. So for Axel, that's about 25-30 lbs that we're struggling to move forward yet keep upright while not getting impaled with the pins or posts. Once we get to the bathroom

The next thing I know it was 8:00 in the morning and the surgeon (and his entourage) was with him. I was snoring on the roll-away bed. Lovely. Pretty sure I was drooling too. And you should see my hair when I wake up.

Dr. Samdani is very impressed with how quickly Axel is progressing, and I have to agree. Once that visit was done it was time to get Axel to the toilet...again...only this time he must have listened to what the Dr. said about how well he was doing, and he did GREAT walking to the bathroom. Still with 3 people, but with much less screaming and crying.

That done, we got Axel into his chair and went down to the front lobby to wait for Papa and Angela to come. I wish my battery hadn't died on my camera! I could have shared with you the first belly laugh we've seen since Monday.

Later in the day it was time for PT. Since kids are really top heavy when they get their halos on, they have to re-learn how to stand up straight, and the older the kid the longer this takes. The little kids do it pretty quickly, the big kids try to overcompensate, etc. Anyway, when PT Mark came the first time he brought with him a walker which helped, but Axel was still really pitched forward. Later in the day he brought a reverse walker. WOW! Axel stood right up, nice and tall! He walked the 10 feet to bathroom without any complaint. When we sat him up I was able to get a picture of his fusion incision. His hip incision is kind of underneath the vest and hard to see. (which makes keeping it clean really easy. NOT!)

Angela had spent the entire morning wheeling Axel's smaller wheelchair around and around the 5th floor, and Axel had been up a couple of times and stressed out by various things, so by that time it was 2:00 and everyone was tired. It was time for a family nap! Axel took the bed, Angela took his reclining wheelchair,  I took the roll-away, and Dean found a couch somewhere in an empty playroom. Angela wasn't really excited about taking a nap, but all I had to do was turn on the T.V., turn off the lights, and out she went! LOL We all slept for almost 2 hours!

One of the girls on the floor had a surprise birthday party yesterday. We all went down to have pizza and cake, but Axel was still sleeping so he missed out. But, the party was a pirate theme, and we brought him stuff! Last night Dean, Angela and I all slept at Ronald McDonald house, so this is how we left the pirate last night. LOL Terri, if you're reading, do you see the chain of fiddles you sent him? His favorite is the barrel of monkeys to shake!

Today I'll try to get a video of him walking. He'll be discharged somewhere between tomorrow and Monday. Since Dean and Angela are leaving Sunday, I have to be able to do transfers with him myself.

Wednesday, May 18, 2011

Sitting Up

Today was a day of changes for Axel. First, our surgeon Dr. Amer Samdani came in to see how Axel was doing. Because we started getting Axel up to pee yesterday afternoon (since he refused to have anything to do with the urinal) that put him slightly ahead of schedule in the recovery process. We'll just have to see if he stays ahead or ends up discharging at about the same time as the other kids.

As you read the rest of this post, know that every.single.step involved much screaming and crying. Some related to pain, and some just about the fact he now gets mad as soon as anyone walks into the room and he anticipates being messed with. He's still living up to the "spider monkey" nickname! Man, can he reach around behind him when you *think* you're holding his arm!!!

So, the first thing we did was remove the bandages on the main surgical site on the back of his neck. The incision is about 4 1/2 inches long, and sure looks sore. OUCH!

Next was to remove the drain from his hip where the bone graft was taken from. This was probably the worst thing of the day. Adults who've had this procedure done say that hip feels like it's been cracked in half. Between the fact they have to move and REmove muscle from the bone in order to get to it, plus they cut a hunk out of it, I can only imagine the pain! Then there is the nerve pain on the skin near the incision. Oh, and pulling the stitch that holds the drain in place. (Renee, the internal portion of Axel's drain was only about 3-4 inches long.)

After that was all removed, a lidacaine patch was placed over the top. This stayed on for 12 hours, then is removed for 12 but maintains it's effect. Another will be applied tomorrow morning. The purpose of the patch is more localized pain relief, allowing him a *slightly* easier time walking.

Next came pin care. Lovely. Cleaning the pins. They're not supposed to hurt, but there is definetly pressure. Axel's crying was much more pissed off than anything else during this fun stuff. Oh, and it was two nurses-in-training learning to do this so they got a lesson in "turning off" your emotions when doing difficult stuff like that.

We also ditched the oxygen he's been getting when he sleeps, and disconnected his I.V. narcotics, switching him to oral morphine instead.

So that was all done by about 10:00 this morning, and with all that screaming and crying he was ready for a NAP. So was I. :-)

At 1:00 PT came in. I can tell you that Axel does NOT like Mark, because Mark makes him do stuff. Like stand on an incredibly sore hip. But today was better than yesterday, and with three people holding him we were able to get him to the toilet to pee. (last night we were just using the camode by the bedside.) One discovery I made: My back is a MESS! Yesterday, the first time we moved him, I realized my back cannot handle bending over him, supporting him. That and in the airport in Minneapolis I managed to do something to my repaired wrist, and it's still not back to normal. So we've been trying to have staff do all the lifting, but I'm a control freak and sometimes it's just easier to do things myself than try to explain it to someone. I know this is bad, and I'm trying to just give it up so that my back is in good shape for when he is discharged and I'm on my own.

After the field trip to the toilet, Mark brought a special treat: A wheelchair! Axel was able to see this place he's spent the past several days, and even got to go to the giant playroom with Dean and Angela.
He stayed in the chair for about 2 hours, dozing off and on before we brought him back to his room for a much needed nap. Just like getting into the chair, getting out includes the same screaming and crying. Oh, and when he's standing and having to "walk" (because it is so not a "walk" at this point.) even though that hip is killing him he's able to stomp that foot in anger! I think I've mentioned his foot stomp before. It usually annoys me, but in this circumstance it kind of cracks me up because we can see his spunk coming back.

Axel did get one surprise tonight. Dean, Angela and I went back to Ronald McDonald house for a few hours so I could get a good nap (slept like a ROCK for two hours!) and dinner, haircut for Dean from a visiting salon, etc. When we came back to the hospital at 7:30 Axel had eaten dinner and was back in his wheelchair, sitting at the nurses station. But he didn't look very happy and wasn't smiling. I went to the room and took out something I'd been saving for a moment just like this. When he needs a favorite something from home.

You know those Signing Time videos? Axel not only watches them obsessively, but he LOVES the little booklets that come inside each dvd case! He has collected them, and at home keeps them all in a nice neat stack which he carries around the house with him. He ADORES these things! So, when I brought them out from behind my back his face lit up for the first time since Monday. OH HE WAS SO HAPPY!!!!!! He kissed the picture of Rachel, made the nurses look at the booklets, etc. He fell asleep tonight holding them. I don't know what we're going to do if these things ever fall apart.

Here's a picture of Axel having a very awake moment in the chair. I had just given him his Signing Time booklets. He was sound asleep again a few minutes later.

Tomorrow proves to be another big day. He'll be getting his vest and halo adjusted so it's straight. They have to wait to do it when he's able to stand up straight, bearing equal wait on both hips. For those who asked, no he cannot bathe with the halo & vest on. The vest does NOT come off except in extreme choking....The purpose of the halo/vest is to keep the bone graft 100% still so it can graft together and heal, and the halo is held in place by the vest, which is fitted to the body.

Kiss the Bear

Yesterday (Tuesday) Axel had just a few minutes where he was feeling semi good. It seems a long time ago already! Anyway, he was loving on his Bobo bear.

Right now I'm waiting for Dean and Angela to come to the hospital with clean clothes for me so I can get a shower. I expect him to get worse today since he's going to get up and moving with PT today, get his vest and halo adjusted, drain tube out of his hip, bandages removed from his neck and changed on his hip and other things he really wants nothing to do with!

Tuesday, May 17, 2011

How About Some Humor?

There are only a few situations in life where you can't find any humor at all, and I'm all about finding it even in the worst of them.

1) Axel has fantastic range of motion, even in the hip the graft was taken from. Yep, he can kick a nurse who's way up by his head square in the chest.

2) Axel can be in the middle of a mad, crying, painful rage, and still manage to say, "Signing Time" to make us forget what we're doing.

3) Axel is intentionally waiting for me to get right in his face to cough. What a sweetheart.

4) Axel grabbed a male nurse in the crotch while getting moved to the toilet.

5) Axel just peed a HUGE amount. More than he normally pees in a 24 hour period. He let out an audible "Aaaaahhhhhhh" when he was done.

6) A male nurse and I were just discussing the fact they cannot tuck Axel's hands under the blankets because it takes away his communication. The nurse proceeded to tell me how his good friend works at the area school for the blind and signs all the time. I'll let you process that one for a minute.

Not funny but VERY sweet, as we were getting ready to move him this last time, I was leaning over Axel's head to move some tubing. He was mad and screaming because he was anticipating being moved when he suddenly gave me a GIANT pucker, wanting me to kiss him. Poor baby!

Just in case

Just in case you wanted to know, (Ann!) Axel just peed 540 whatever-the-unit-of-measurement-is!!!!! It's a major event to get him up to pee, and in four hours we'll be doing it again.

A Very Rough Day

The morning started out pretty good. Axel was "de-intensified" (had his arterial line, catheter, one of his IV's and oxygen cannula removed) and he was moved back down to a regular room.

About 3:00 he was complaining and pushing on his belly. They scanned him and found 400+ mls of urine in there (about double what his capacity should be.). He was wearing a pull-up, but you know...he's TEN and not gonna pee in it. We tried a urinal, and that got him making his noise he reserves for the most annoying situations. Although he wasn't due to start moving until tomorrow, we decided to try getting him to the toilet tonight. That took four people. Lots of crying and screaming because the hip where the graft was taken was very painful! Got him to the toilet but he just couldn't settle down. Finally we gave up, put him back to bed (more screaming) and used a catheter to empty his bladder, removing 475 mls of urine. Poor baby.

Two hours later he was distended again. We scanned him and he already measured 200+ mls. That's what happens when the kid is doing great with drinking! So we brought him to the bathroom again, and this time he WENT on his own, which was a huge accomplishment. But when we stood him up (four of us crammed into the TINY bathroom area!) his belly was still distended. We scanned him while he stood there and he was still at 200. UGH! We sat him back down and I sat in the bathroom with him balancing him for about 1/2 hr. Still nothing. We finally gave up. We'll try again in just a little bit but if he doesn't go, we'll have to cath him since his bladder is so distended, which makes his pain management difficult.

Moving him to the bathroom right now is a huge ordeal, and my back does not like it one bit. Once he gets his IV out it will require one less person, and once he understands that he has to stand up straight (and not KICK those helping him) it will be even easier. I'm sure Axel feels like me, that life would be great if he (and I) could just blink and these next few days would be over.

News and Thanks

First, BOTH Axel and I got a good night sleep last night! WOOT WOOT! I didn't hear a sound out of Axel after about midnight, and even that was just for a couple of minutes. His nurse kept him loaded up on meds, and watching his monitors closely for signs of agitation before he even woke up. (changes in heart rate, blood pressure, etc.) Axel easily becomes hypothermic even on a good day, so his body temp is running a little on the low side, but otherwise he's doing just great. I've had a shower and everything already so I'm ready to start the day. (ok, well those who know me also know that by 10:00 a.m. I'm going to be contemplating a morning nap. LOL)

Dean and Angela stayed at Ronald McDonald house last night. I skyped with them around 8:00, and Angela got to see Axel for just a second. Dean said she was in bed all of four minutes before he heard her snoring. Hopefully Dean got a good night sleep too, because we're switching kids this morning and he'll be on Axel duty.

Today will be a difficult day as we start bringing Axel's pain meds down a bit, then tonight or tomorrow we'll move him out of PICU and back down to his regular room. Ok, I am off to find a toothbrush!

Monday, May 16, 2011

The set up

Here are a couple of pictures of Axel's room in the PICU. Most of the machines should be gone by tomorrow afternoon.

We got to see our boy!

Warning the pictures are not pretty. Poor baby is tellling us "I uh ooooo" (I love you) and signing the sweetest OK when we tell him to close his eyes and rest. He is in FULL restraints since our little spider monkey managed to kick a nurse right in the chest eventhough she was way up by his head! He has great aim thanks to years of having to use his feet as his only defense.

Out of surgery!

Axel is out of surgery and in intensive care. We're just waiting to go back to see him. We hear he has opened his eyes already!

Surgeon update

Axel's surgeon was just in to talk to us. The dangerous part of surgery is done! Now they need to close him up, clean him up, then put the vest portion of the brace on. That whole process takes around 2 hours. So probably 2 1/2 to 3 hours before we will see him.

A HUGE thank you

I cannot thank my friend Colleen enough for picking up Angela from the hospital this morning, and keeping her occupied for the day so that we could focus on Axel. You deserve a GIANT hug!!!!

Halo is on

The halo is now on and they're just making the first incision. That is the end of showers or baths until the halo comes off several months from now.

On another note, there is no internet access in the 7th floor.waiting room so we're headed back down to Axel's 5th floor room to hang out. And...there are twobeds in there.  ;-)

And he's out!

They took Axel into the OR about 5 minutes ago. He was hillarious on the happy juice! Laughing so hard he could barely breath. LOL

The surgeon did decide, after watching Axels stretch armstrong impersonations that the halo is an absolute necessity so no more questions about that!

This is the very last picture of Axel's head without scars. We sure love our little spider monkey!

On thier way up

OR team is on their way up to get Axel.

Sunday, May 15, 2011


Axel is in bed for the night. Not sleeping yet though. They put his I.V. line in around 6:30 tonight, and now at 10:30 they were hooking up the I.V. bag for the first time, so he's a little worried about what that machine is all about, and the line going to his hand that he was pissed off about to begin with.

My friend Tink and her daughter Anna came to visit us at the hospital. Tink is my twin from another mother, but we were never knew each other until we met three years ago. (Check out my "Epic Journey" posts!) Anyway, they brought us some AWESOME bread and Bruschetta (which I have not touched yet, but I know I will be getting into tomorrow!) and eight different flavors of ice cream for Axel to dig into. It was a welcome treat, and always refreshing to get together with her. I don't have to explain anything about myself to her because she is my twin. Oh, and Tink, just so you know, Axel is now blowing raspberries on everyone! ROFL

Dean is staying at the hospital tonight and Angela and I have come back to the RMDH to sleep. PLEASE PRAY that we don't have cab issues in the morning! When Axel and I were here in Feb, we waited 90 minutes for a cab after being told "10-15 minutes". Today we called at 10:30 a.m. to order a cab for 12:30. It came at 1:15.  Now I have a request in for a cab at 5:30 a.m. so we can be to the hospital by time for them to take him to surgery around 6:30. PLEASE PRAY OUR CAB IS ON TIME!!!! I'll be getting up at 4:00 a.m. to call again just to make sure.

Dean...I know you're reading...sleep well sweetheart, and give my boy an extra bunch of kisses from me and Angela. See you in the morning! LOVE YOU!

The little prince

The prince is enjoying his last meal. The cafeteria food leaves much to be desired here. The nurses say its much better during the week.
Check in to the hospital was smooth. Our only problem has been the cabs. We ordered a cab at 10:30 a.m. for 12:30, and it didn't come until 1:00. I called them again to order a 5:30 a.m cab for tomorrow morning. Dean is staying overnight with Axel so Angela and I need to be back here by 6:00 at the latest.( its only about 2 miles away.) They'll be taking him for surgery around 6:30-6:45 so our cab better be on time! If you remember back in Feb. We waited 90 minutes for a cab.

Headed to the hospital.

I forget that I have been throught this with Angela more times than I care to count, so it caught me off guard a bit to find Dean near tears as we waited for the cab that would take us to the hospital. I'll be fine until tomorrow but Dean could use your prayers.

Dean posted to his blog today for the first time since December. I know he'd love to hear from you.

Twitter and Such

I have a remote blogging app on my blog, but apparently it doesn't like to work. If you look on my left sidebar you'll see a twitter widget that DOES work so I can get updates there. Otherwise I'm praying there is wifi in the surgical waiting room tomorrow!

We're Here!

Other than an interesting landing --the kind where the plane is almost ready to touch down and it suddenly pulls up to a steep incline then makes a sharp-banked turn--the flight was uneventful. Oh, well and Dean kind of left me in security with four bags, two kids and one wheelchair, but we're all good. ;-) (he didn't know than when a security agent is rushing him along he can say, "You'll have to wait, I'm helping my wife and kids get all their clothing of, electronics out of bags, and everything sent through the scanner!" Next time sweetie.

Our flight landed at 2:00, and we waited to be last off the plane since they would be brining Axel's wheelchair from the planes belly anyway. So we finally get to the jetway and wait...and wait...and wait some more for the chair. Finally we decided that Dean and Angela would head to baggage claim and Axel and I would catch up to them.

So Axel and I waited.....and waited...and waited some more. There was another guy on the plane who was waiting for his electric wheelchair which wasn't showing up either. Finally the flight crew was making phone calls, and a guy brought us an airport wheelchair. "No. Where is OUR wheelchair? Can't miss it, since it's covered with American flags."


After a good 20 minutes they realized that both our and the other guy's chair had been sent to baggage claim by mistake, so we waited for them to bring them back to us then made the loooooooooong walk to find Dean and Angela. Can I just say, I am *so* glad we bought this chair for Axel? It is a life-saver during long walks through airports, and will be completely necessary after his surgery.

My friend Colleen picked us up and brought us to Ronald McDonald House. (Front & Erie street for anyone who's wondering.) By the time we got settled and everything it was 5:00 so we decided to head to the room for a little rest. (don't say "nap" to Angela!) Angela and I both slept, Axel rested playing with my hand, and Dean watched TV.

At 6:00 we went down to dinner, then got a surprise for the kids. There is a great game room here pool table, ping pong, air hockey, name it. Angela loves airhockey and we knew Axel would here so we showed them the table. The played for about an hour and thoroughly enjoyed it!

While they were playing Dean and I chatted with a young couple who just had their first baby two months ago via in-vitro fertilization.  He was born with a tracheal-esophageal fistula along with amniotic banding syndrome, and just had a gtube put in not too long ago. They'll be bringing their baby home for the first time next week, and are quite nervous about the whole gtube thing. I remember that feeling SO WELL! I was able to give them a few ideas about how to deal with the tube to keep it safe (he still has the foley in and won't git a mic-key for a  month or more.) and just give them some general assurance that the tube really will be no big deal once they're used to it, and that when they get home they can finally get on with learning all about living with a new baby...their firstborn...and loving on him without the interference of hospital staff!

We finally brought the kids back to the room about 9:00, had baths and got the two of them...and myself...tucked into bed. ;-)

Today is a big day.

Saturday, May 14, 2011

The Haircut

Last night Dean's parents brought dinner over. Oh, that was so nice not to have to think about dinner! We had a "shave the head" mini celebration. Axel needed his hair cut before Monday's surgery because we're looking at 6 months with no haircut and no hair washing. NICE! Anyway, I took lots of pictures. (blogger makes the pictures appear out of focus. Click on them to see them better.)