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!"

Wednesday, January 30, 2013

On the agenda for today

Now that we are all healthy again, it's time to get some stuff done!!! Today is an errand running day.

First, back in early November I bought a living social deal for a facial. I have had to reschedule it a couple times but today I'm finally going to get it done. It feels like I spent a lot of money when really I didn't. And, it's rare I do anything for myself so today I can without feeling guilty because I bought it months ago. LOL

When that's done I have a fun errand to run! All of the documents and paperwork I need to do for the adoption is complete. Today I'll be dropping that stack off with the homestudy agency. Tomorrow is our homestudy visit. Once our background check comes back (sometime next week I hope!)  our homestudy will be complete and I can send everything off to Serbia!

I must get something done in the house! I'm behind from the last couple weeks of sick people!

Tonight I start back to dog school. This time I'm not teaching, but Roman and I are taking a class. We've been out for a really long time so it will be good to get back. And, it makes me get out of the house and do something fun one night a week. Dean has bowling in the winter or golf in the summer. I have...ummm...nothing. I really do miss teaching too. Maybe once we get our new son home I'll get back in the ring. Surely I will have even more spare time once we add another. Right?

Monday, January 28, 2013

The Plague

Over Christmas the plague hit our house. Dean was the one most affected. Angela has missed school a few times since then.

And then it hit, for real! On Sunday, January 20th, Angela started that barking cough that tells me it's time for the nebulizer. Monday morning she woke up with a 103* fever. She was SICK! The every-four-hour neb. treatments started as well as Tamiflu and doling out Tylenol at regular intervals.

She slept, and slept.

On Wednesday Axel woke up with a 102* fever. He laid down and just cried. He was miserable, poor kid. Tamiflu and Tylenol for him! By afternoon Dean was in bed with a fever too.

Angela still slept.

Wednesday night I realized I was now nebbing Angela every 2 1/2 - 3 hours. That means that the inhaled steroids were't cutting it anymore so it was time for a boost. We headed to the E.R. Thankfully it was the fastest E.R. visit EVER and they got us in and out of there pretty quickly. She was given oral prednisone along with a prescription for z-pack for the sinus infection she'd also developed.

The whole week there was a lot of this going on.

By Thursday Axel was acting better but I kept him home anyway. Angela was still on the couch and still getting nebs every 4 hours, sometimes a little more frequently.

Saturday the boys were feeling better so they went to my friend's house. Poor Asher was going a bit stir crazy with the rest of us doing nothing but laying around! But throughout the day Angela was going downhill. Her fever was gone but I was having to give her neb treatments much more frequently, and by late afternoon I realized we were down to every 2 1/2-3 hours. This is much too frequently and an indicator it's time for stronger meds and rule out pneumonia.

She and I took a trip to the ER. She was really dehydrated again, making me feel a bit defeated because I had been forcing her to drink a large glass of water every hour for days. Unfortunately the rapid breathing she'd been doing causes her to still dehydrate no matter what I do. She was started on an IV and they added steroid meds to it as well. These help reduce inflammation in the lungs. She had a chest X-ray done to rule out pneumonia. Thankfully she didn't have that but the did have lungs that were hyper inflated from trying so hard to move air. The person is trying to breath deep, but the inflammation causes the air to get trapped in the lung.

Even with the IV steroids she was needing to be nabbed every hour and a half so she was admitted. There was period when she needed continuous nebs for awhile because she just couldn't get over the hump. By midmorning on Saturday she turned the corner and was back to only needing nebs every 4 hours. She was discharged after dinner and so far, so good at home! It'll be a few days before she's able to return to school. She's missed several things last week that she's not happy about!

Axel returned to school today, although he's still seeming a little bit off. He doesn't have a fever or any other symptoms, he's just very quiet. Makes me wonder if he has fluid in his ears or something. Dean also went back to work today. I think he was about ready to go nuts with all the laying around!

Thankfully Asher and I were able to avoid the crud last week. I kept praying, "Please, God, if I'm gonna get sick, make it be when the kids go back to school!"

Wednesday, January 23, 2013

Perfecting skills


Yesterday I showed you the video of Asher perfecting his jumping skills. He's been working really hard at this. "Obsessive" is a good adjective to use right now. He's jumping over lines on the floor, doorway thresholds and all kinds of things I can't see. When he bends over to pick up something, he doesn't stand up, he jumps up! LOL It's quite cute actually. He'll be bebopping his way through room and just...jump...totally out of the blue. What a riot he is!

But now he's working on a new skill. I don't really know what to call it though. It's one that makes me scratch my head!
video

Monday, January 21, 2013

Jump!

Asher has been trying to jump for several months now. "Bend your knees and JUMP!" is something we have been singing around here for what seems a very long time. He will stand in front of me, hands on his knees, waiting for me to sing it.

When he first started learning to jump, I'm sure he felt he could reach the ceiling when in reality his feet never left the floor. Instead he kind of got up on his toes. It was so cute!

Then, a couple of weeks ago, he realized if he held one hand for balance, he COULD get off the floor. Only a fraction of an inch, but he was jumping. He practiced, and practiced and practiced some more. Like a toddler learning to stand for the first time, Asher was determined to jump.

Finally. Finally he got himself off the ground in a REAL jump!

Yesterday I decided to see if he understood the concept of "Jump OVER!"

He has jumped "over" 3,402 times since then.



Thursday, January 17, 2013

Communicating

We have two boys here who are in the midst of a communication explosion! Unfortunately one of them has gotten things mixed up.

Earlier in the week I picked Axel up from school to bring him to therapy. His teacher told me that during snack time he had signed "cinnamon bar", indicating he wanted the same bars for snack that one of his friends had. He had done it on his own without any prompting. I told him we would stop and pick up more snacks.

Later, after therapy we stopped at the grocery store, only it wasn't our regular store. The one we were at was about twice the size and layed out differently.

Axel stopped me at one isle, "Snacks school." he signed.

"Oh thank you for remembering you need snacks for school."

He lead me down the isle and half way up the other until he found the cereal bars. "Cinnamon bar." he signed and picked out a box of cereal bars.

"Good choice Axel. You chose your own snacks."

Then he spotted different bars with a strawberry on the front. "Forgot strawberry." he signed. He put his boxes back and chose two boxes of the strawberry bars, placing them very carefully into the cart. "School snack backpack" he signed.

"Yes, when we get home you can put those in your backpack, then bring them to school tomorrow."

The following morning Axel reminded me his strawberry bars were in his backpack.

"Oh that's right! You need lunch money too!" I quickly wrote out a check, stuck it in an envelope and said as I wrote on the front, "Axel's lunch money." He put it into the folder in his backpack. Later I got a text from his teacher. "Axel came into the room and signed, "Lunch money backpack" as soon as he got here!

This is a HUGE leap in communication for Axel! Talking about things that are out of context. Reminding me that he needs things, AND telling me things without any prompting! Way to go Axel!!!!

Asher, too, is doing more communicating. Just today Angela's behavioral staff came to the door. Asher ran to the door barking....just like the dogs do.

We'll have to work on that more.

Tonight Dean was leaving for Thursday night bowling. He asked Axel if he wanted to go along. Axel said yes , got his jacket and put his shoes, coat and gloves on. Asher got very excited about this! He dropped the toys he'd been carrying around and ran to me.

 "Jacket, jacket jacket!" he signed. Asking me if he could put his jacket on.

"I'm sorry Asher. Today is Axel's turn to go along to bowling."

Asher's lower lip stuck out as he dropped to the floor in protest. He put is face down on his hands. A few seconds later he stood back up.

"Me me me" he signed, which is his way of signing "my turn, my turn, my turn".

"Asher, I know you want to go with daddy..."

"Daddy daddy daddy."

"Yes, you want to go with Daddy but..."

"Go go go!" (signed and SAID the word)

"Honey, you are staying home with mom."

"Home." he signed with a sad look as he watched Axel walk out the door. He ran to the window and watched Axel climb into Dean's car.

"Daddy daddy daddy!" he signed.

He came running back to me in the living room.

"My turn. Daddy."

I gave him a hug.

"I'm sorry honey. You are staying home with mom. Next week Daddy will take you along. I promise."


Sunday, January 13, 2013

Old Movies

Tonight I was working on a video project for Cherish Our Children International. While digging around in my account I found some old videos I haven't watched in a long time. I thought you might get a kick out of this one. This is Angela when she was around 9 or 10, explaining the EEG equipment she was wearing. She cracks me up!

Thursday, January 10, 2013

EEG

This has been a really long week and it's only partly done! Ok, I had to change the title of this post because I started writing it on Wednesday. LOL

Axel has been having episodes since the day we brought him home (December 2010 at age 10) that we have always chalked up to institutional or self-stimming behavior. When school started this fall, everyone decided these episodes had gotten more frequent and look a bit like simple partial seizures. We decided to get this checked out because they're affecting a significant part of Axel's day.

The first step is to take measurements of Axel's head, then mark and clean specific spots where the electrodes will be glued.



Then it was time to start gluing everything on. Axel was not thrilled with this process!!! In the institution, because of the way he'd been restrained, he developed some pretty awesome self-protective maneuvers using his feet. He put them to good use during this process. 

This is the "I'm not happy and not going to look at you any more." look. 

Wrapping everything under gauze so it stays nice and secure overnight. 

The wrapping is done. All the wires are plugged into a computer. 

The computer is placed inside the backpack so moving around our "hotel room" is easier. There is a telephone cord that tethers the backpack computer into the central system. This cord is about 20 feet long and allows Axel to move to the bathroom if needed, but for the most part he's supposed to stay sitting on the bed. There is a camera in the ceiling and they'd like to be able to see his face and eyes. 


Hanging out on the bed for a full 24 hours! There is a button hanging on the headboard that I push any time I see questionable activity, or the episodes we've been noticing. I noticed several within 10 minutes of starting the test. Every time the tech would come into the room and ask what I'd noticed, so that he knows what to watch for on the video. After awhile, once they were familiar with Axel, they didn't need to ask anymore.


It was a long night sharing that queen-sized bed with Axel. The kid flops all over the place like a fish! At home, about every 20-30 minutes he starts banging his head on the mattress, and each time lasts about a minute or so. (this used to drive me crazy hearing him do this all night long. He even did it when he had the halo screwed into his head! Finally a few months ago we changed sleeping arrangements and replace all our 1970's hollow-core bedroom doors with solid oak doors. This is allowing everyone to sleep much better at night without having to hear the banging) Axel didn't head bang at all during the study, but he did sit up and rock several times during the night. Rocking is a very common post-institutional behavior. We haven't seen him do it for a long time so I was surprised it happened on this particular night. Now, this was NOT a sleep study, which monitors the quality of his sleep. This was an EEG only, which is looking for seizures, and the overnight is to rule out nocturnal seizures. It's pretty clear that Axel's sleep is seriously disturbed and he doesn't get much quality sleep at all. We'll be doing a sleep study soon to address this. I could have had the two tests done at the same time but that would have required coming up with the idea beforehand and not in the middle of the night as I watched him rock in the dark.

Today (Wednesday) the neurologist's office called and said they were able to see all the episodes I had marked on the read out. There are definite differences in his brain waves at that time, but hey are not seizures. Instead they are "stereotyped movements", which is a fancy way of saying "just" self stimming behavior and nothing to be concerned about from a medical standpoint. We're not at all surprised that's what he's doing, as it's pretty common post-institutional behavior, but we needed to rule out that it was true seizures.

From a behavioral standpoint they ARE concerning because he completely checks out at this time. He looses chunks of time and takes a few seconds to re-orient when he comes back to us. The next question is what, if anything, do we do about it? The sleep portion is just one issue, but what about during the day when he completely checks out? I'm not really sure the best way to handle this.

Axel is on another planet so much of the time that it is sometimes frustrating. He is a very smart young man, but there are days...like today...that make me scratch my head. It is winter in Minnesota so Axel goes to school with boots on his feet and shoes in his backpack. Today I got a text from his teacher saying he had come to school with two left shoes.

How could this even be possible? At the moment he only has one pair of shoes that fit him. His orthotics are in his shoes.

We texted back and forth trying to figure it out. He had on one size 4 boys shoe, a gray high-top tennis shoe with thick, fluorescent green laces. Those laces match his jacket and his backpack. The other shoe he was waring was an 8W low-profile shoe (just happened to be a woman's shoe)  that has pink piping and gray laces. It was MY shoe!

Now, Axel has very good problem solving skills, but this morning when he (apparently) couldn't find one of his shoes, instead of looking for it he just grabbed the next gray one he could find. It just happened to be mine, several sizes too big, and included the orthotic I have for my feet which is very different from his orthotic.  To Axel this solution would work just fine. I keep going back to the fact my shoe was huge  on him, the orthotic probably felt awful! He ended up spending the day wearing his boots. I bet tomorrow he brings HIS shoes to school.

So, thankfully seizures were ruled out, and now he knows he has to bring HIS shoes to school. All we have to do is figure out how to stop him from leaving our world 20+ times per day. Believe me, the term ADD has been tossed around plenty!

Wednesday, January 02, 2013

2012 in Review

Here's a look back at 2012. Lots of pictures and a few videos to remind us of the year behind us.

January....this month was all about helping Asher adjust to life in a family, in a home, with a bed that hadn't been slept in by multitudes and clothes that were all his own.

A "family nap" was declared by mom!

Learning to cause and effect...

Learning to love a bath

Angela chose to get rid of unnecessary stress


While Dean and I decided to add to our stress. Brilliant idea with a new kid home just a couple of weeks. But really, is there ever a GOOD time undertake a major remodeling project? Why yes, yes there is! While you're vacationing in Tahiti for four months. Too bad that wasn't us. (I had no idea we would eventually be without a sink or stove for SEVENTY SIX DAYS!!!!)




February.....  Brought us a check up at Shriners. For those who are new this was a post-op cheek up for Axel after his spinal fusion for AAI.

Which brought us to our friend Nolan's house in Philadelphia. It's always fun to hang out with friends! (they were supposed to be 'resting'!)

While were on that trip, Asher had a major injury to his finger. Poor baby took the end of it right off. It was a long couple of weeks soaking it while it healed.

We spent a lot of time in stadium seats....

While Angela played some basketball

and earned some more ribbons for her wall!

The month ended with Asher getting a major tune up. (tonsils and adenoids out along with urological reconstructive work)







March.... Could it be the kitchen is close to done? NO...no...we still have weeks to go, but the sheetrock is done!

I made a 30 second decision to bail to a hotel with the kids while the floors were being refinished.

We decided on paint colors...or changing chosen paint colors....

And my amazing husband got all the painting done while I kept Asher out of it.

Axel got his first ever ride in the sidecar. In March. In Minnesota! Amazing.

Finally...finally the cabinets arrived!

Asher supervised the unloading

April...oh sweet April!!!!!

Asher started school!


And therapy


And thank God in Heaven, the kitchen was FINALLY done!!! (notice there are FOUR bar stools and we only have 3 kids here. Hmmmmm) 


Just in time for Easter!

Axel helped Dean in the garage

May.... In May Asher found the wonderful sunlight and spent nearly every day soaking up the vitamin D!

It also brought track and field, and Axel's first season to participate in Special Olympics!
 And more outside time.

June...Angela turned 16 this year!

and Asher learned about mowing the lawn

And sadly we lost my niece, Princess Destany, at 6 years old.



More track medals for the wall



Angela went to camp Wawbeek for the 5th year in a row.

July...found the kids and I packing up the van for a road trip to the NDSC conference in Washington DC




And meeting many friends along the way!






It also brought a check up at Shriners in Philadelphia where we found out that Asher also has AAI!


July also brought the sudden loss of my brother in law Tony, pictured here with his daughter (my niece) Tianna at her wedding last year.


August brought Axel's 12th birthday

and a trip to the dentist for everyone!



And since it's a quiet month around here, it also allowed for extra bonding time between brothers.


Then came September and school started! YAY SCHOOL!!!



Asher, at 8 years old, is almost a full two years older than everyone in his Kindergarten class, but he is by far the smallest.


We snuck in one last parade with the cousins!





We did some more work around the house.


We even filled in our HUGE pond! No more water worries with kids here!

We made our back yard a bit safer to access...


And went to the Step Up for Down Syndrome walk

October was really busy. There was some sadness at the sudden loss of my cousin Kim. 


 but the biggest events were Halloween and Asher's birthday which falls on October 31st!

Oh and Angela started cheerleading!!! You can find her in this video, she has short hair with a big bow on top and is wearing black pants. She comes out doing a somersault so is easy to spot.




November found the kids dancing at Asher's school sock hop




and Angela's friend Adam's birthday party. 




And finally....finally we've made it to December! 
We got the lights up on the house.

then we finally got our first good snow!

Axel was in a play at school. He was the fox in the Gruffalo.


On December 14th, 2012 I was going to announce the big news in our family. Instead I turned to Facebook and found our nation mourning as 20 innocent children and 6 teachers and staff were gunned down at Sandy Hook Elementary School in Newtown, CT. My friend's daughter Charlotte was in her classroom on that fateful day. We waited and waited for the names to be released. Seeing Charlottes name listed first at the top of the list took my breath away. My prayers continue to be with their family.

 A few days later, we announced our news. We have a new son coming to our family and hope he will be here in April! I cannot post a picture of him yet, though we have seen him. He's SO HANDSOME, full of life, with a giant smile that will surely brighten the days of anyone who sees it. We cannot wait to get him home.

Christmas day finally arrived. The kids were SO excited!

With Charlotte's passing came the reconnecting of old friends lost to time and distance. We were able to reconnect to Remember Charlotte's Light. We wore pink, Charlotte's favorite color.





Charlotte's favorite song was "Home" by Phil Phillips. The day before she was killed, Charlotte and her mom Jo Jo were in the car when the song came on. Charlotte loved to sing it at the top of her lungs, "Louder Mommy!" she said, as they sang together. I know a whole group of people who will always hear those words, "Louder mommy!" whenever they hear that song. We sang in honor of Charlotte.


As we say goodbye to 2012, we remember those we've lost with heavy hearts. We remember the joys, the smiles, the blessings God gave us this year. We look ahead to 2013 with hope for peace, love and that we continue to be blessed by God however he sees fit. We anxiously await the arrival of our new son and the adventures we'll have with him. Thank you God, for seeing us to 2013!!!!