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, July 11, 2017

Oncology check up and The Anxiety Monster

Today I had a check up with my Oncologist.

First, let me tell you, three years out and I still have trouble saying things like, "Today I'm seeing my oncologist" without my stomach turning in knots. The word oncologist doesn't belong in *my* vocabulary. It belongs to other people. THOSE people who have cancer. Oh wait...that was me, wasn't it? Three years and I'm still not used to saying it. A life-time of oncology appointments to go.

I once said to my doctor, "I need to stop thinking of myself as a cancer patient. I don't have cancer anymore. You took it out. Chemo killed what was left. You people rebuilt my body. Why can't I just move on?" I could tell from his face he has had this same conversation many times with other breast cancer survivors. "You had breast cancer. You will forever be a cancer patient. Some days you may not think of it at all. Other days you may feel fear, anxiety, and even panic. For some people this will decrease as time goes on, but for others it gets worse. All of it is normal."

Why all the worry? Every year out from diagnosis is another year that cancer could rear its ugly head again. We are given a long list of symptoms that, if noticed, warrant a call to our oncologist: back pain, unexplained fevers, unexplained fatigue, abdominal pain, bone pain, loss of appetite, severe headaches, seizures...the list goes on. You probably notice these can be normal, every-day aches and pains, yet for the cancer patient they can trigger worry. "My back hurts. Why does my back hurt? I haven't done anything for my back to hurt. Maybe there is cancer in my spine!  My belly has been tender for days. Why? Maybe  I have cancer mets in my liver!"  Take me for example. The last couple of weeks I've been running fevers for no apparent reason. One of the chemo drugs I was on causes Leukemia in approximately 10% of those who received it, and the survival rate of those with  chemo-induced leukemia is next to nothing. So, when I started running fevers for no reason, it has been difficult not to panic. In my head I say, "The chances of actually developing that leukemia is very low. 90% of patients on that drug do NOT develop it, so stop worrying." But, if you've been reading here for any length of time, you know that rare is the norm in our house.

So, as I said above, today was my three month check up. Well, really it was 6 months, but anxiety preventing me from going three months ago. I know, I know, that doesn't even make sense! But I just couldn't do it. Walking into that building causes me to break out in a cold sweat, my heart races, and I always...always...end up crying in the exam room for some odd reason. Today I was not going to do that. Today I would walk in, get my blood drawn (OMG! Maybe this time they will find tumor markers in my blood!) I would ask my questions and get the heck out of there! I don't drink wine, but today it sounded really good.

Well, wouldn't you know, they have a new thing in place at my oncology clinic. It is a quality of care survey that will remain in my chart, and they wanted me to put down how important various things are related to my care. Think healthcare directive here.

"On a scale of 1 - 5, how important is it for you to be pain free in your final days, if "pain free" means you take medications that make you unable to function or think clearly."

Seriously?????

I felt my chin begin to quiver. Doggone it! I was NOT going to cry at this appointment! I started to take deep cleansing breaths.

"On a scale of 1 - 5, how important is it for you to receive nutrition by any means necessary - such as a feeding tube - if you are no longer able to eat by mouth."

As I looked at the paper, the tears were threatening to spill from my eyes. Blinking would have made them fall for sure. The paper became blurry as my eyes filled. The nurse finished her tasks and left me alone with that form.  I quickly reached for the box of tissues, dabbed my eyes, and shoved the tissue into my purse. "I will NOT cry for the doctor this time. I will NOT!" How does one answer these questions when one is not dying? What if I say today I don't want a feeding tube but in that situation I change my mind but can't voice that decision? This is a stupid form!"

I finished the form and pushed it away.

Finally my Oncologist entered the room. He had to do a double take, looking at the  name on my chart then back at me, since he didn't recognize me. (that is another post.) I told him about the fevers. He looked at my blood results and said it looked fine from his perspective but encouraged me to see my primary doctor if the fevers continue. He did his exam and gave me the all clear to not return for 6 months. (WOOP WOOP!!!!!) And do you know what? I didn't cry for him today. Nope! I maintained my composure. I asked intelligent questions, and I made it out of there without hearing those words "you have cancer" again.





Friday, July 07, 2017

Trying again - Running for Amos

A couple weeks ago I posted about Amos, but for some reason the link wouldn't work so I'm attempting again.

Back on April 3rd we packed up the family for a 10 hour road trip to Amos' sending state to finalize his adoption. FINALLY he would be forever hours. We were so excited! He has been with us two and a half years, it is high time to have this done.

Only it didn't happen that way. We arrived in the sending state to appear before the judge, only to be told we would have to start all over here in Minnesota. All the money on attorney fees we had spent was thrown right out the window. Whoever said adopting from he US is less expensive has no idea how difficult, and expensive, it actually is. You can read the whole story here, and why I'm "Running for Amos" to raise the last of the fees needed to complete his adoption once and for all.

******The widgets aren't working on blogger, so please CLICK HERE to read the full story and find out why we're having to start over. And if you feel like it, please share.*****

Saturday, June 17, 2017

Running for Amos

"Adopt from the US!" they say. "It's easier!" they say. Yeah...not so much.

We were so close to completing Amos' adoption! Back in March the only thing left was for us to make a court appearance so the judge could sign the decree. Only it didn't happen quite like that.

Sunday, May 21, 2017

Four years home, and the Argument for Medical Cannabis

The use of medical cannabis is a hot topic in the disability community these days. I mean, what? People are considering giving POT to their kids? How can this even be considered a good thing? Let me tell you...

I think it is safe to say, everyone who knows us knows which of our kids is most challenging. Abel is so severely damaged by his first 10 years in institutional care, and we took a huge leap of faith by agreeing to add him to our family. Every moment in Serbia with him we questioned if we were doing the right thing.  We knew the alternative. Because Abel was basically a wild animal and the institution staff could no longer manage him, in just a matter of days he was being sent to the adult institution in Subotica. (Soo-buh-tee-tsa) It is a bad, horrible place that no animal should ever experience, much less a human being, and certainly not a 10 year old boy.

After several days of twice-daily visits to the institution we were allowed to take Abel back to our apartment in Belgrade for the weekend. As we walked out the front doors, the last thing his caregiver said to us was, "Oh, and he sleeps great!" I turned to Dean. "You know that means he doesn't sleep at all, right?"

We took a child who had slept in the same institution his entire life, had the same food day in and day out for 10 years, and brought him to an upscale apartment owned by my friend. With people who don't speak the language or cook the right foods. We were scared to death. I don't know what we were more afraid of: that he would destroy the apartment or that he would destroy us. With the shortest attention span I have ever seen in a 10 year old child, we tag-teamed until bedtime. Finally, all three of us exhausted, we put him to bed for the night. That caregiver's words came back to us. This is what he did the entire night while our hearts broke, wondering if we were every going to be able to help him.



The following Monday we brought him back the institution as scheduled. Again, we were asked if we wanted to move forward with this adoption. We could not walk away with the knowledge of his imminent transfer on our conscience.  We knew this would be hard. We knew we were taking a risk. We felt we had all the tools available to us to make it work, if it was possible for it to work. We also knew that even if it didn't work, even if he could not function outside of institutional care that he would still be better off in the US than in a place like Subotica.

Abel has made great strides since joining our family four years ago. He is reading sight words, doing some addition and subtraction, building vocabulary at lightning speed, and has more than doubled in size. He turned 14 in April! But to say this has been easy would be a lie. Abel challenges our patience more than any other child in the house. He is a very intense young man. I don't know how to explain the energy that emanates from his every pore. It is electric. Like a static shock when you touch metal, you can feel his energy when he comes near you, and "near you" is an understatement. Abel doesn't  yet understand personal space and the phrase "please back up" is commonly used here.

Abel doesn't play with toys. He has some things that he likes to use for self-stimming behaviors. If he is allowed, he will spend hours of every day spinning a ball on the floor, or dangling a small stuffed animal. (remember his block he had in Serbia?) While it would be really easy to just let him do what he wants all day, we don't. Thankfully he DOES like to have a job. He is our go-to man when we  need something carried heavy up the stairs, like a basket of laundry or groceries. He LOVES to carry the groceries because then he's the first to see what we brought home. ;-) He is still very food obsessed and spends many ours of every day orbiting the kitchen in hopes we will feel sorry for him and give him another snack, even though he may have just had a snack five minutes before.

We have discovered a way to burn some of his energy. Both at home and school, as a reward, Abel earns time on the treadmill. He runs between 3-5 miles on the treadmill every day. Did you catch that? *As a reward*!!! When he's not running on the treadmill he's jumping on the trampoline. He jumps high. He jumps hard. He jumps at a steady pace.

Those activities I've described above are Abel's life. It is no surprise that last year he was diagnosed with severe Autism and PTSD (as were Audrey and Amos) With Abel in the throws of puberty, his energy became even more difficult to manage. His intensity increased. His anxiety, which is through the roof, became worse. He started digging holes in the palm of his hand and digging at the end of his nose. He bit holes in his socks and rubbed his big toe to the point of blood blisters. Thankfully he doesn't really acknowledge the other kids are here so it is very rare there are problems between him and the other kids. Still, he was escalating with Dean and with me, and we didn't know what to do. He has been on a cocktail of anti anxiety and anti-psychotic meds since he came home. Some have been beneficial and others were not.

School was pretty rough too. He has an amazing team of staff at his school but it was all starting to fall apart. Finally he hit a point he was no longer functioning at school. As much as school is our respite from his intensity, it wasn't working for him anymore. We opted to shorten his days and do the majority of his schooling at home.

For the last year we have been researching the use of medical cannabis for kids who have Autism and related behaviors. In Minnesota the use of medical cannabis is approved for children if they meet a specific criteria. Abel has very severe tics (some related to autism, and some we know are related to severe PTSD) which interfere with his ability to function much of the time. Abel tics 5-10 times per minute while awake. The doctor submitted her approval to the State of Minnesota, and we in turn jumped through all the necessary hoops to get Abel started on medical cannabis.

In Minnesota the use of medical cannabis is highly regulated. There are a couple of approved labs, and quality and purity are closely monitored. All of that comes at a high cost. Since insurance does not cover medical cannabis we pay it out of pocket. Because it is state, but not federally mandated, schools cannot administer it. If we fly we cannot take it on the plane. We cannot cross state lines with it. And yet, nobody has a problem if we give him a cocktail of anti-psychotic drugs with an laundry list of side effects. The cannabis has no side effects. None.

This video was from Abel's first day on Medical Cannabis. I wish I had thought to take a video the day before he started. He had NO attention span and there is *no way*  he would have attended to this task, or tolerated the frustration of me correcting him.


Abel has been on medical cannabis for two weeks now. The effects have been dramatic! He still has tics, but they are much less intense, and he's no longer injuring himself. He is no longer obsessing over food and when we're going to eat, and doesn't feel the need to constantly orbit the kitchen. The three hours per day he is at school is now cooperative and and back to fully participating. In fact, if there was more time left in the school year we would put him back to full days. It is clear to us that choosing to try Medical Cannabis for Abel was a good choice.

Four years. Four very interesting years. We sure do love this guy!!





Monday, May 08, 2017

How did this happen?

She's turning 21 soon. Lately I feel like I'm not doing enough. Suddenly "adulthood" is here, and there is so much left to teach. Its not about cutting myself some slack, because I know I have done plenty. Its about realizing there is just still so much! Where do I begin to teach the rest of it? I feel like I've left out so much. What do I teach the next one now so I don't feel the same when he turns 21? Or will I always feel this way, no matter their age? Have I not focused enough one one area or another?


These are the thoughts of a mom, when the house is quiet at 2:30 a.m.

Saturday, May 06, 2017

What causes this to happen?

With the arrival of each new child I have purchased or acquired developmental toys at their level. Although they had never seen toys, much less experienced playing with them, my hope is always to get them interested in toys and attempt to teach appropriate play skills. 

It has never worked. 

I have quite the assortment of toys to teach various skills: a toy kitchen to teach pretend play, shape sorters, puzzles, stacking toys, etc. You name it, I have likely purchased it. 

Yesterday morning I stood in the family room, staring at the shelves full of play things collecting dust. As much as I hate garage sales -well I like going to them, I just don't like the work involved in having one - I decided it's time to have one. I would wait until the weekend and start going through stuff. 

Later in the day I was looking for Angela. I called for her several times with no response. I looked in her usual places. I finally found her, totally engrossed in the toddler toys. Angela was never one to play with toys. She was always so difficult to buy gifts for. Now here she was playing with a toddler car track thingy. At 21 years old.  

What causes this phenomenon to happen? The one where the mom thinks about getting rid of stuff so the kids start playing with it? 

Friday, May 05, 2017

Spinners! All the rage in 2017

These things:

Some people got them for their kids who have sensory processing needs, such as those who have ADHD or are on the Autism spectrum. They are a good thing. Unless....

Unless you are a classroom teacher and suddenly every kid in your classroom has one. Now they're not just a tool, but an annoying toy that has quickly taken over schools across the country. Teachers are throwing up their hands in frustration!
They're showing up in news reports. Some schools boards are banning them and letters are going home to parents.

Is all that truly necessary?

The other night Dean and I were out, and met up with a 4th grade teacher. She happens to have Autism. She also happens to have a couple spinners in her purse. She has done a marvelous job of incorporating them into her classroom.

A friend of mine brought up a good point: Kids don't know limits and boundaries with things like these spinners. I couldn't agree more. It is up to us to teach them what is appropriate at school and what is  not. Does flat out banning them teach the boundaries? Hmmm yes, but I think its a pretty harsh move. It also teaches kids to be sneaky.

What can you, as a teacher, do to use this current fad to your classroom advantage? Here are a few suggestions:

1) Set goals, "When everyone is finished with (insert learning activity) we can have 5 minutes with the spinners." or maybe "if everyone completes X this week, we can have 'Spinner Friday' for the last 30 minutes of class on Friday.
2) Learn from them. Have the class research on how they were developed, why they were developed, how they are made, etc.
3) Use them for math activities. Graph the colors of spinners kids in your classroom have. For older kids, research the money involved, "How much money is the investor earning?" and I'm sure there are lots of other math activities that could be done.
4) Make it a class-wide fine motor activity, "On the last Monday of school we'll have a spinner olympics! Start learning your tricks now!"

What else could teachers do to incorporate the spinner craze into their classroom activities? Please post in the comments.



Friday, March 24, 2017

It's my Cancerversary!

Cancerversaries are an odd thing. As survivors we celebrate that we are still walking on this earth to tell our story, living our lives. The day also brings with it a flood of memories of "that day". The day when our lives were forever changed. The day we learned we're not going to be around forever. The day we learned we, as humans, are just walking around with targets on our backs! People who have never had cancer will say "Oh, get over it. Its behind you. Move on with your life." And we do that, mostly. For me, every check up with my oncologist will bring with it trepidation.

Here is how my story began, three years ago.

......................................................................

Thursday

Audrey saved my life.

My new daughter, who we just brought home, saved my life.

I had to have a physical for my adoption. This is standard procedure and required. I've had the same physical four times now, as every adoptive parent does. My doctor reminded me I was due for my annual mammogram. I scheduled it for a few weeks later then, in the excitement of getting ready to travel I missed the appointment.  I would have forgotten again but this time Dean reminded me. His previous wife had breast cancer and he wasn't happy with me for skipping a mammogram last year.

Dean insisted on coming along for my 9:00 appointment then we would get a coffee afterward before dropping him off at work.

 First I had the mammogram done. Nothing like having your breast pulled down all the way from your chin!!! The imaging screen was behind me, out of view. When all the images were taken the tech put them up on the screen so she could make sure they were good images and nothing needed to be re-done. I turned around to see them myself.

Suddenly I couldn't breathe.

This didn't look like my mammogram from 2 years ago. No. No it was very different.

The radiology tech said she needed to have the radiologist review the films. When she returned she told me I'd be having an ultrasound. I was brought to a little waiting area while they got the ultrasound ready.

There were a couple other women waiting with me, all of us in our white, scratchy clinic robes. I wondered if they were just getting screened. I wondered what they knew about their breasts. I wondered if they were as scared as I was. 15 minutes ago I wasn't scared, now I was petrified.

"Leah?"

The tech put the wand to my breast. I asked her to turn the screen a bit for me so I could see. I was in school for a year for sonography. I didn't finish (we adopted Asher instead) but I was there just long enough to know what I was seeing on the screen. "That's not a cyst." I said.

In my head I was screaming, "Oh my GOD that is NOT a cyst. I know that is not a cyst."

Breathe Leah. Just breathe.

I went back to the little waiting area again, but this time I was alone. There were no other women waiting because they had their mammograms and got to go home.  It was only a minute before the nurse came back to get me. "Do you have anyone with you today? The radiologist would like to talk to you."

I wanted to vomit. They don't ask to talk to you, and if you have someone with you, when everything is all good. This was not all good. I could feel it, all the way in my bones. Every cell of my body screamed "RUN!"

I waited in a small conference room while the tech left to retrieve Dean from the lobby. I noticed a box of tissues on a nearby desk and quickly grabbed a handful, shoving them into the pocket of my scratchy robe.

Dean came in and sat down by me.  I couldn't talk. I wanted to vomit. I was afraid if I opened my mouth some kind of floodgates would open and the result would be really bad. And then the radiologist, in her white lab coat, stood before us, the tech at her side with her blonde pony tail and her pink and purple scrubs.  "I've reviewed your mammogram and ultrasound. You do have a mass there that is small, but it needs to be biopsied."

That is when my world started spinning.

I buried my face in Dean's chest and sobbed.

But see...here is where the doctor didn't follow the script that was in my head. It was at this point she was supposed to say, "This is just a precaution. Chances are this will come back fine."

But she didn't say that. She just stood before us, waiting patiently while I composed myself. She said nothing.

She told us we would have the results back by noon tomorrow (Friday).

The radiologist and tech left to prepare the procedure room while Dean and I sat and waited.

"I can't have cancer." was all I could whisper. It was all I could think.

Couldn't this biopsy wait until Monday? Let me digest this for the weekend? No...no...they do not waste any time here. This is a breast clinic and this is what they do. There would be no waiting.

Just a few minutes later they came back to get me. Dean disappeared to the lobby while I laid down on the exam table. The radiologist put the ultrasound wand to my breast and I stopped her. "You see these all the time. What do you expect these biopsies to show?"

She took a breath. Her words were gentle and soft, but very firm, very clear. "I am honest with all my patients. You're scared and you want to know so there is no reason for me to be vague. I expect this biopsy will show that you have cancer."

"I need a number. Can you give me a percent?"

"Well...I would say I'm 95% sure."

And then I cried. One of those silent cries where you want to say something, I needed to say something, but my throat was too tight to talk and...again...I couldn't breathe enough to talk.

"I'm ok. I'm ok. I'm ok....." I said. While I tried to breathe.

And then I told her why I was upset. About our family. Audrey. Everyone. I can't have cancer.

I cried some more.

Finally I said, "Ok...lets get this done."

The doctor was so patient with me. How many times has she had a freaked out woman on this same table asking the same questions?

She put the wand back to my breast and I told her what I understood of the image on the screen. "You would have made a good sonographer." she said.

She painted my breast with antiseptic. She explained she would be inserting a needle with novocaine (or some other numbing stuff, I don't even remember.) and it would hurt a little. It did hurt, but not as much as my tooth last month. Then she inserted a second needle for deeper numbing behind the lump.

"Next I'm going insert a special needle. When I'm in the right position I will activate it. It makes a loud clicking noise but it should not hurt. If it hurts please tell me." The whole procedure looked just like this.

Courtesy Mayo Clinic Health Library
I waited for it to hurt. My whole body tensed up with the waiting.

CLICK

I tried not to jump but I did anyway. It sounded like a staple gun. There was a small tugging sensation, but no pain.

"I need to do three more just like that. I will tell you each time so you don't jump."

I asked her to show me the sample that was taken. It was about an inch long, and a thick spaghetti noodle. "There's my cancer." I thought.

I started taking deep, cleansing breaths like when I was in labor. Long, deep breaths to take me somewhere else. To a beach, with sunshine. Anywhere but here.

"Ok. Here is the next one."

CLICK

I exhaled. I didn't know I was holding my breath.

"Alright. This will be the third. I'm activating now."

CLICK

"Ouch. That one hurt a little bit. Not bad. Like a pin prick."

"That was the deepest one. This last one you should not feel at all. Activating now."

CLICK

"There. That was the last one. Now I'm going to place a small metal clip, about the size of a grain of rice, into the lump. This marks it for future reference so if a new lump were to appear we know this is the original one."

The tech bandaged me up. Then the doctor asked if I have a picture of my kids. I showed the pictures I took back in August, then of Audrey on the day she was removed from the institution. Skinny, with her head shaven and in ratty clothes. Then I showed her a recent picture. "She's beautiful." we said together.

"This is a small lump. I can't say for sure until we have the biopsy results back, but typically this is treated with a lumpectomy and 6 weeks of radiation. Very rarely is chemotherapy needed for this type of lump. Six weeks of radiation won't stop your life. You'll be a bit tired, but it doesn't knock you down like chemo does. I expect that you'll be meeting with the oncologist and surgeon on Monday. But sweetie, you are going to be ok. This will likely show a very slow-growing cancer. Its gonna be ok! YOU are going to be ok."

I hung onto those words. No, I clung to them as if they were a life-ring tossed to me while I bobbed and floundered in the ocean.

They handed me a bright yellow sheet of paper with post-biopsy wound care instructions, then walked me back to the small waiting area. There were three other women waiting. I sat down in a chair in the corner. I started to cry. I couldn't stop. The tears just kept coming. Here were three women, waiting for their own  mammograms, and here I sat, golden ticket in my hand, sobbing. One woman wiped a tear from her eyes while the other two hid behind their magazines. I realized I was freaking them out and tried to compose myself. I picked up a magazine. What does it say? I couldn't really focus on the words or content. There is a puppy in the picture. Cancer. Do I have cancer? I don't like how the room on this page is decorated. What will the biopsy say? I couldn't concentrate on anything but the words screaming inside my head.

Yet another tech came to get me for another mammogram. This one is needed to make sure that little metal clip is in the right place. As she started to position my breast on the plate, my whole body started to tremble. Like I was freezing only I was dripping with sweat. "I need to sit down." I said, and she quickly moved a chair to me. Apparently I was a bit pale. I just needed a minute. Just a minute. Why was I shaking all over? I realized I was a bit shocky, probably from being really tense about feeling pain during the biopsy. Probably from just being told I have cancer.

I needed to talk to Dean. He didn't yet know what the doctor said in answer to my questions. He didn't know the doctor said this was going to show I have cancer.

We took the couple of mammo films that were needed and I was finally allowed to get dressed. I got into the changing room and pulled out my phone to text my sister. My hands were shaking so bad I dropped my phone twice. I sent her some garbled text about "its not good."

I walked to the lobby and spotted Dean. He came to meet me as my phone rang. It was my sister. "I can't talk now." I said, and hung up on her. I couldn't breathe. I was starting to hyperventilate. I wanted to run..run away...I felt trapped. "Get me out of here." I mumbled to Dean. Really, I needed him to lead me because I didn't know where to go because I couldn't think.

We left the lobby of the breast clinic, and the eyes of others waiting, and stepped into the bigger, main lobby of the clinic. I lost it. Never in my life have I cried so hard. Dean just held me as I sobbed. I felt my legs give out under me and Dean held me up. Through choking breaths I told him what the doctor said. That she expected this to be cancer. "I can't have cancer!" I cried. I cried so hard. Dean cried with me and held me, there in the lobby of the breast clinic. And I became aware of women coming off the elevators, moving into and out of the clinic, going about their business, seeing this woman freaking out and knowing in an hour that could be them. Or for some, that was them just months ago and they know. They know the shock. The disbelief. I didn't want to be part of them.

Finally, after several minutes, I was able to catch my breath. Everything about today was about breathing. It was so hard to breathe all day. I had to call my sister back. I looked at my phone. A little over an hour.  In one hour I had a mammogram, and ultrasound, a biopsy, and found out I probably had cancer. It was only 10:30 a.m.



Yesterday I was fine, today I have cancer.

Thursday, March 23, 2017

Take Two

One year ago in April, Angela had surgery to repair her liver. It was a procedure that had never been attempted before, but it worked! We couldn't pull her gtube yet though because the rule is she has to make it through flu season without any pneumonias, then we can pull it. Yippee! We made a final follow-up appointment with her liver surgeon for the end of April, with plans to pull her gtube May 1st 2017. Angela wanted to plan a party for it.

Then the last week of February, everything went south. Angela was wheezy and her nebulizer treatments and inhalers were't cutting it. She went to her nephew's birthday party, was gone just a few hours and came home a mess. I took her into the ER with what I suspected was aspiration pneumonia, and I was right.




CRAP!!!!

Her swallow had been doing so well! I became suspicious that something was up with her liver so started watching for some of the more subtle signs. I didn't need to watch very long. Within a few days Angela became very irritable. She complained of a headache. She became "flat" with no emotion and no ambition to do anything. She didn't even want to leave the house or go to school. Not wanting to go to school almost qualifies her for an ambulance ride. LOL Looking back at the very subtle signs she shows, we think her ammonia had been slowly climbing for about 6 weeks. I knew....

On March 3rd Dean had his right knee replaced. That same day Angela started declining. I had to leave him in surgery and run to her school. I ran her over to the University of Minnesota Discovery Clinic to get her bloodwork done.


 She was at 51. 20-50 is considered normal, so she wasn't super high, but she was acting like hers was higher. She was acting the way she used to act when she was in the 80's. Very odd. but enough to make a noticeable difference in her behavior and mood, which are our only indicators. That, and as you can see in the picture, she looked terrible. A few days later we checked her again and she was in the high 60's. Still not even close to extreme (she's been in the 280's before) I think maybe her body finally got used to functioning within normal levels so that little jump really made a difference for her.

We started her back on the ammonia scavenger drug Xifaxin (it is actually an antibiotic which, in very high doses, acts as a scavenger drug) until we could we could assess what was happening inside that liver of hers. She had an ultrasound done and I could see on the screen that jump graft was bigger than it had been in August.

Angela's team had a big meeting to go over everything and today she and I met with her surgeon to discuss their findings. The jump graft had, indeed, opened more than what it was in August. We are setting a surgery date to make another attempt to close it off. This will be done by the Interventional Radiologist.

In this procedure they will use a large needed to go though the liver into the portal vein, then guide a wire through to where the jump graft is and attempt to close it off. She will stay in the hospital overnight for observation, then come home and be back to herself!

However, if this attempt doesn't work, she will need an open procedure done. They will re-open her abdomen like they did last time.

Needless to say, we're hoping that doesn't big surgery become necessary. That was a very rough recovery for Angela.

Angela knows there is a surgery coming up, and in true Angela form she's excited for that. "What? I get an I.V? YAY!" She graduates from her transition program this spring so we're praying 1) the simple needle procedure will work and 2) we can get it scheduled without her missing any of the pre-graduation festivities at her school.

So, that's the Angela update for now!
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Sunday, March 19, 2017

Sneak peek

Someone has a very special day coming up. 
Can you guess what it is?
 
 

Halo Shirts

Some of you were around six years ago when Axel had his cervical spinal fusion. That was quite a time in our lives! Waking up in a halo brace is pretty traumatic for a kid, not to mention the pain involved.





Axel had a bone graft taken from his hip, which was actually more painful that the actual spinal fusion.


Then, the body doesn't like the halo, and the muscles of the neck are constantly fighting the restriction so neck spasms were frequent for the first couple of weeks.

What I didn't know about ahead of time was how difficult it would be to dress him in a halo! They are big, they are bulky, and they are awkward. They also don't fit in a shirt! I searched the internet for some kind of pattern. Axel was shirtless for two weeks until I eventually came up with what I'm about to show you. I very likely found it in my search but I don't have any idea where. I'm just now posting it because 1) A friend's daughter is having the same procedure done and 2) I had a really hard time finding anything when I was looking.

First, I use iron-on velcro. It has adhesive on the back so it will stick where you want it while placing it, then iron it on. It holds up in the washer and will stay on a t-shirt for about as long as your child wears the halo. If you can sew, or know someone who can, you can use sew-on velcro if you prefer. For one child medium t-shirt you'll need approximately 29 inches.

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You need a shirt a full size bigger than what they usually wear. Start with your shirt laid out flat.

Measure on both the front and back of the shirt, starting at the sleeve/shoulder seam, 5 inches.



Here's how I make the cuts. Please excuse kid and dog noise in the background. Its a busy house!


Where to place the velcro


Here is how you put the shirt on. Keep in mind when your child has the halo on, he/she won't be able to look down to see their feet or to put their hands in the sleeves. It is better to have them sit in a chair to put their feet in, then stand up to slide the shirt up. Until they're used to their new view you'll have to help them find the arm holes.


Axel wore his halo shirts everywhere.




Friday, February 03, 2017

Blast from the Past

When we moved into the new house, summer had arrived! All I wanted to do was be OUTSIDE, enjoying our beautiful yard with the kids. Painting and decorating would wait until fall weather moved in. We managed to get the two boy bedrooms painted, then the next day the Toilet Crime of 2016 happened. All plans of decorating came to a screeching halt as we demolished, then rebuilt the lower level of the house, and parts of the upper level. Then it was the holidays, and here we are! February. Its time to get some pictures up on these walls people!

For months I have had a particular project in mind but have had to put it off again and again. Today, finally, I am going through pictures so I can get this going. I found this video I don't remember taking. (It was while I was going through chemo, and I really don't remember much during that time) This video is bittersweet to me. Abel, when he was still trying to talk. He stopped long ago. Audrey, newly home, still not understanding English, instead giving us her fake barbie doll smile. (You'll see it. It was very fake! It was a "survival smile", that she used even in Serbia when she didn't understand what was going on. Look how little they are! Abel is a young man now. His voice has changed, and he's taller than Angela. Audrey, looking pretty lost, has recently gone through a huge developmental leap, is trying hard to say words and just seeming more aware of her surroundings.



Thursday, February 02, 2017

Three months and I'm back!

I don't think I've ever taken such a long break from the blog. Is there anyone still checking in????

So much has happened in the last 3 months, I don't even know where to begin. I will say, my hiatus was precipitated by "The Toilet Crime of 2016".

Yes, there was a flood. A flood of very dirty water from a toilet on the upper level of our new house. The last week of August. The week before school started.

I woke up that morning hearing Abel laughing his "oh I did something naughty!" laugh. I was so sleepy and groggy. I opened one eye to find the sun was barely up, and Dean had already gotten up so figured he would deal with whatever Abel was up to. Then I heard Abel laugh again, and an odd thump sound, like somebody had fallen.

I jumped out of bed to investigate, as I approached our bedroom doorway my foot splashed in water.  step splash, step splash splash splash....what the heck? In the hallway I was standing in over an inch of water. Still not awake I hollered.

"DEAN!!!!!! DEAN!!!!!!!"

Where was he? Why was Abel upstairs? What is going ON???"  There were clothes floating out of the toilet, making it clear this was an intentional disaster of the type Abel enjoys. Yes, he likes to plug toilets then keep flushing over and over again as the water runs out the toilet. This one was especially pretty since there was also poop now floating on the bathroom floor.

I threw open the bathroom linen closet to grab towels, only there were none there. There never are. UGH! I splashed my way out of the bathroom to find towels, and realize Abel is dripping this wet - that must have been the thud I heard. He must have fallen in the water - and is laughing as this dirty toilet water is tracked all over the house. GAH!!!!!! I ran to the lower level for towels. When I turned the corner into the lower level hallway there was water coming out of the light fixture. "OH MY GOD!!!! DEAN!!!!! Where ARE YOU????"

I turned into bathroom. Axel was sitting on the toilet looking stunned. Probably because directly over his head was the bathroom vent, with water pouring out of it and onto him!!! "AXEL! Get UP!!!!" I pulled him off the toilet. "DEAN THERE IS WATER COMING OUT OF THE CEILING!!!!" Just then I heard Dean come in the door. "Whats wrong?" he hollered. He had run to the store for milk before the kids got up for breakfast, not realizing Abel was already awake. I went back to the hallway and looked in all the bedrooms. Axel/Abel's room was fine. Audrey's room was fine. Asher/Amos' room was a different story. There was water pouring out of the ceiling and was still running. How could there be so much water???? (we never did figure that out. He probably flushed the toilet 10 times or something)

That dirty water caused major damaged through two levels of the house, which resulted in an SOS call to the insurance company. Within a couple of hours there was a demolition crew at the house, destroying it!!! They had to GUT the upstairs bathroom (floor, sheetrock and vanity)  upper hallway (wood floors) lower level hallway (ceiling, carpet, sheetrock)  bathroom (floor, vanity, ceiling, sheetrock) and one bedroom (that I had just finished decorating the day before, now destroyed carpet, walls and ceiling)  We spent the first week of school living in a hotel room with 6 kids and two dogs.

Once the demolition was complete we had to wait for the other part of the insurance cogs to turn. We had two months of the 8 of us using our small 1/2 bath in the master bedroom. But it could always be worse, right? There were several times over the course of the rebuild that we had to be out of the house for several days at a time. Since the carpet in the lower level was destroyed in the hallway and one bedroom, we ended up having to replace all the carpet in the lower level and main level (because it's all tied together). Money we weren't really intending to spend at this particular point in time!  Because the wood floor in the upper hallway had to be replaced, and you can't just replace one area and think its all going together with the rest of the wood floor, we had to refinish the entire wood floor in the kitchen and dining area too. (thankfully that was covered by insurance!)

Anyway, the last of the project was completed the first week of December. Then we RACED to put the house back together because I had major GI surgery on December 7th. ;-) (All went well, I'm fully recovered and back to normal)

And here we are. February already! Our first Christmas in the house was beautiful. Even with all that was going I feel so much more at peace than I have in years. I'll try to post some pictures from the last few months. 

Sunday, October 30, 2016

Therapy Room Project


When we were looking for a new house, one of the things on our list of "must haves"was space for a therapy room. In our old house we had that space in the basement, but it was tough to find such a space in the houses we were looking at, especially since it also had to have a kitchen that didn't need remodeling. LOL 

Then we found THIS house.  It originally had a two-car garage, but at some point that was made into a workshop, with an additional 3-car garage added to the front. This is what it looked like when we first looked at the house back in March.


When we first saw it, my mind said "Therapy room!" 

Dean's mind said, "Woodshop!"

"Therapy room!"

"Wood shop!"

As summer moved along, thoughts of winter started moving through Dean's head and he remembered what a sanity-saver this space can be for us. First, we had to finish the odd area between the house, which became a mudroom. (I'll do a different post on that space.) Then we were interrupted by the Great Toilet Crime of 2016, which involved a toilet, lots of water, LOTS of damage, and a LOT of stress. It has been a two-month process to get the repairs done, including vacating the house for several days at a time because it just wasn't safe for the kids at some points. In fact, we'll have to vacate one more time while the wood floors are repaired. 

When we were a bit overwhelmed when it was time to start the therapy room. In the realestate pictures it was so nice and organized, then we moved in! LOL Somehow there were a lot of boxes marked "shop", that happened to be full of tools and shop-like things. Ummm sorry honey!



Dean was determined, and got it all cleaned out!




Finally, with lots of late nights of hard work and painting it all came together! 











We have a few pieces left to add, including some shelving to store smaller therapy items and changing the fluorescent lights some recessed LED lights. Last night we had a large family gathering. All the kids LOVED this space!! It was absolutely perfect. 






























Friday, September 16, 2016

Another 12

My dearest Audrey,

Today you are 12.  Two and a half years ago you arrived on US soil a scared, traumatized, anxiety filled little girl. You couldn't do anything for yourself yet, but you were ready to take on the world. 

Audrey you will always hold a special place in my heart. It was you who saved me, forcing me to find out about cancer before it could progress any further. Its a good thing you're cute though, because man you can sure get into mischief! 

Now you do so much for yourself. Even when there is something a bit beyond your skill level you're still more than willing to give it a shot. You're so very close to swimming on your own, and I can't wait until next year to see what you can do! 

I have to tell you something. Your birth mother, she loved you very much. So did your sisters and, most specially your aunt. They are thrilled to see how far you've come. How much you've grown and changed. I know today their hearts are heavy missing you. 

There are people all over the world who love you to the moon and back, Audrey! 

12

Thursday, September 15, 2016

12

This guy...12 years old today. His second birthday with our family. When he got up this morning, as he was coming up the stairs Dean and I started singing "Happy Birthday". He got the BIGGEST grin on his face. "Happy happy" he signed. "Cake. Birthday!"

Oh this boy! He has changed so much since finding his way into our family. He has gotten taller, and heavier. (size 5/6 bands now, and 6/7 shirts) Dressing himself, trying really hard to brush his own teeth, feeding himself all his meals and chewing all his food. FINALLY drinking from an open cup with very little spillage.

His favorite activities are jumping on the trampoline with Audrey, riding in the big van, or anything with water. Right at the end of summer he was just getting brave enough to get into our pool and stand on his own two feet, bouncing his way along the side. I hope next spring it doesn't take  long for him to start again.

Happy Happy Birthday Amos! We sure do love you!

12


Tuesday, September 13, 2016

The Lasting Effects of Neglect

This is circulating around social media today. What happens when an infant is severely neglected, goes hungry, and then grows up?

 This happens. I see so many things, with three of our kids in particular. My hearts still breaks for them.


Sunday, September 11, 2016

Parenting Our Children with Reactive Attachment Disorder (RAD)

My friend Meredith Cornish is the parent of many biological and adopted children. She periodically "thinks out loud" as she processes things that are happening in their journey as a family together. Today she has written the description I have thought so many times but could not ever put into words. What Meredith has to say is brilliant, and needs to be read by EVERY.SINGLE.PERSON who works with or loves our children. I mean it. Every one! Maybe, just maybe, some will stop thinking all we do is yell at our kids. Maybe some will stop thinking we're so incredibly strict and our kids are just never allowed to be kids. What Meredith has to say explains why we prefer to have family get togethers in our own home, and why bringing our kids into the homes of others is nothing less than torture for all of us (our kids and us!) Why in someone else's house we can't let our guard down for even an instant and we're always on edge. Why when people come to our house, even familiar people, our kids start testing every limit (moreso than a typical child will.) And why we have to become MORE strict when someone is here!! All the whys...there are just so many whys!!!! So, I will just copy and paste all of what Meredith had to say here. Please read it. Please stop talking about us behind our backs about how "Mean" we are with our kids. How we're "So strict" with the kids, etc. What you are saying is hurtful, and yes it does get back to us. You have no idea how difficult this job is, and how isolating it is.

"Parenting isn’t easy on any front, and parenting a child with RAD can feel like a series of tactical moves that are executed, challenged, held to, reevaluated, intentionally changed, and continuously re-aiming at a target that is in motion and has no idea that it is in motion. (Yes, I realize this can apply on some level to most kids!)
Children with RAD often are caught in the current between opening up enough to feel happy and in control and closing off enough to not be hurt. There are barriers that shoot up at a moment’s notice and others that are overwhelmingly out of bounds the next moment. It is often a challenge to them to test every directive given to them and see how much of it they can take under control and manipulate it to what they see as their best outcome without any regard for anything outside of their own circumstances. “Put your shoes on” may be accomplished but challenged by putting them on the wrong feet. “Go to the bathroom” is done by urinating on the bathroom floor, or going into the restroom and not toileting, or by taking off a random piece of clothing and putting it back on inside out, or throwing it in the garbage, or not ever returning from the bathroom and just camping out there until someone comes and gives them attention by looking for them. Does any of this sound familiar?"
**Some of our children's staff are reading this, and specific behavioral situations are coming to mind.**
Children with intellectual disabilities and RAD often appear to be socially much ‘higher functioning’ (for lack of a better term) and intellectually ‘lower functioning’, because of their innate desire to adapt to blend in when they desire and to stand out as much as possible at other times. When something is asked of them, then playing ‘dumb’ is a skill. Intentionally not following directions to control a situation is often done through a blank look and feigned dependence.
In our house we refer to this as "learned dependance". Some of our kids have moved past this, and some are in the thick of it now. All of our kids are very capable learners, but some have pulled the wool over the eyes of school staff  members. It is not your fault, they are just trying to have control over a situation. And, when you *think* they've learned a new skill and they realize you know, they will suddenly self-sabatoge it and intentional do that skill incorrectly. (shoes on the wrong feet, not be able to match colors, etc.) You can test a self sabotage situation. Here's an example: Little A (all of our kids start with A. ;-) ) is suddenly unable to match colors. You were sure he had this down, but he noticed your excitement. The attention and excitement causes the wiring in his brain to zing a bit. You are "proud" and that comes with attachment, and he is afraid of attachment. He doesn't know what to do with that "proud" feeling and so he destroys it. Shoots it down. Suddenly he can no longer match colors. He is back to being in control of the environment and the emotions shown around him. If you remove your excitement, and just say "when you match all the colors you get x (probably a food reward) suddenly he can match colors again. Then you know, it was all about control. 
Whenever I wonder how we’re doing with this whole parenting thing, I have to remind myself that there’s a battle over the heart and soul of my children with RAD, and that the battle began well before our kids came to our home. The two children I’m referencing here each spent 6 and 8 years of their lives without permanence. They had rotational caregivers, many of whom were not kind to them. The people who had any type of long term relationships with them are the ones that gave discipline-- often harshly-- and who gave them cold baths and stern words to get large groups of intellectually disabled people directions. Those people who came in and out of their lives for a few hours or days at a time-- missionary visitors and other humanitarian volunteers-- are the ones who gave them candies and hugs and kisses, who snuggled them and pushed them on swings, and who whispered and sang and were kind and sweet. The strangers in their lives before their adoptions were the ones they had fun with and who had no boundaries when they were around. The caregivers who were there on a semi-consistent basis were the ones who weren’t to be trusted and who weren’t kind. Then there was the issue of the caregivers leaving, or the child transferring institutions. Any type of bonds that were formed had been broken repeatedly. When a child is adopted out of an orphanage situation, their brain is wired not to trust the permanent caregivers, and women especially since that’s who a majority of their daily interaction was with. Instead, the brain is wired to accept and yearn for strangers and their affection and attention. There was less risk of ‘love and loss’ with strangers, and the strangers weren’t as likely to have any reason to have to establish any boundaries. 
As a parent of children with RAD, we’ve had to re-wire our parenting to recognize this hurt, traumatic past, and the way that our children are thinking that’s different than children who were born to us or given excellent care by long term loving individuals before coming to us (though we recognize that any child who has a need for adoption has experienced some level of trauma). 
Our kids with RAD often have two modes. I call them “home” mode, and “visitor” mode. Home mode happens when there is an established adult authority figure that they know they must obey. This adult cannot be established from a ‘transfer of authority’, but must prove themselves. There’s got to be a secure way of giving consequences that are meaningful for this adult to establish control of the situation, and it is VERY important that the adult establish themselves as the authority figure or ‘visitor’ mode will kick in. 
In home mode our kids listen, are well behaved, and though there are specific behaviors that tantrum, they will generally follow a well-established routine. Home mode is also where most of the testing comes out and most of the obstinance, because there’s the conflict with not wanting to be able to attach to a caregiver because of past hurts. Home mode sees the worst of the behaviors that show anger, resentment, and defiance. These behaviors usually will be aimed at the primary caregiver, often the mom of the household (remember the women caregivers at the orphanage?). These tough behaviors are usually saved for AT HOME, or in a very familiar area with familiar adults, because of the desire for control. Kids with RAD often are very obedient around strangers when under the care of an established adult authority figure.
Home mode doesn’t mean a child is “at home,” it simply means that the child recognizes that the rules, authority, and routines that have been well established within their home apply to the situation. Home mode could be with the parents in the home, with the parents in a different environment, or with other trusted and established authority figures in the home or another environment such as school or church. In "home mode" children feel safe because they know the established boundaries and consequences.
Conversely, if a child is with a “visitor” or an adult figure who has not well established themselves with meaningful consequences which cause a child to recognize them as an authority figure, then the child will enter ‘visitor’ mode. Visitor mode is how the child would act when they go off with a humanitarian visitor or missionary that doesn’t have any established authority and who has no means (and historically a likelihood of no desire) of giving any type of meaningful consequence for outrageous behaviors. A child may go into all-out behavioral overload when they feel released to have zero boundaries. They also feel very unsafe in this situation because there’s no assurance that this adult won’t attempt to serve consequences and the uncertainty of what the consequences may be if they are given out. Because of the feeling of insecurity, there’s a hightened sense of protecting at the same time that they are going wild, and even a slight maneuver that feels like it could be someone establishing authority will be severely reacted to. The reaction could be rage, mania, self harm, harm of others, or anything in between. There’s a high occurrence of repeated behaviors that give the child feedback that they enjoy and have figured out that they can get away with such as playing in a toilet, flipping light switches, running away, screaming, tearing at projects being done, throwing, stealing from others, undressing, and the list goes on… These behaviors are probably not seen very often in “home” mode unless the child feels a sense of independence that they’re not sure what to do with (in other words, mom and child get ‘comfortable’ and mom lets down her guard… then these may come along at home, but probably not as regularly!). 
We’ve had to learn that if we’re not within our home or another established location and we put on a ‘sweet tone’ and give a direction, our children with RAD have the high possibility of flipping to “visitor” mode, and they’re unable to listen or obey. As soon as we give in to a behavior that’s asking for something in an inappropriate way, they may turn back to “visitor” mode. If we let a rule that was established as a result of some of their ‘gateway behaviors’ go because we don’t want to hurt the feelings of someone who doesn’t know that this behavior has significant consequences to the child’s mind and then behavior, then we have to quickly re-establish that the rules haven’t changed, we are still the same parents, and the rules all still apply.
 For instance, our son wants to be held by every stranger, but if someone picks him up, he will begin clawing at them and pulling at their clothes and grabbing their face. We have to determine that we will NOT allow him to climb people, because that is a gateway behavior that leads into him losing control and doing all these other difficult behaviors and often melting down in a short time.
 In the same manner, when someone who is truly a ‘visitor’ in our children with RAD’s lives (a teacher, therapist, babysitter, even family member that doesn’t have an established authority with the child) tries to take on an authority role, it will take a significant amount of intentional time with consequences that are meaningful to that child in order for the child to be able to determine that that adult is someone who they can trust and who they must obey the rules for. Additionally, the rules and ‘gateway behaviors’ that have been established with the parents have to continue to be effective for the additional caregivers with the same (or an acceptably similar and meaningful) consequence. 
When our children go to school, the school staff are "visitors" in their world. Remember they have never been in a school setting before, and some have changed settings since joining our family. Keep their world SMALL for quite some time. Remember for a long time when Abel started at his current school staff who did not work with him were instructed to NOT interact with him? No eye contact, nothing. This is exactly what Amos and Audrey need now. They need to have NO visitors into their world until they are secure with their current staff and understand those staff are not "visitors" but have a consistent set of rules and boundaries. Remember do not allow even one behavior that you do not want repeated. If you allow it even once, you have damaged your ability to establish your authority in the school setting. You will likely never be able to take them on a community outing if you do not establish yourselves as the authority figure in the school setting. 
This write up was just a brain dump for me, a reminder that my kids have trauma that has shaped the ways that their brains work, that their emotions work, that their thoughts process, and that their love is expressed. It’s also a way I can see how much we’ve come in the 2-6 years that our children have been home. Progress is amazing to see in hindsight. Baby steps are seen all along the way.  
We still have a long way to go, but the journey is one for the heart and soul, which means that our biggest way to combat the frustration and difficulty of parenting children with RAD is PRAYER. We can’t change the way our children’s brains are wired, but we can strive to understand them and to have the patience to deal with them, and we can spend time in PRAYER because GOD CAN.  
If you do not have experience with parenting a child with RAD, please remember that children’s disabilities aren’t always visible, and RAD isn’t something that many people would know or understand if they’ve not had first hand experience with it. Sometimes I want to carry a sandwich board that I can put on that says “I’m not being mean, I’m being consistent because my kid grew up in an orphanage and if I’m not consistent then there’s no hope of us having a successful life together, so please cut me some slack! This IS how I show I love them, I promise I’m not being mean!” But really, then I’d need another that says “sorry, can’t stop and tell you our life story right now,” “nope, not all the same daddy- EIGHT daddies (and 8 mommies too!),” and “I don’t take our play group grocery shopping.” :) 
Got to keep laughing. Got to keep smiling. Got to keep praying. Then we’ll make it, day by day! God is good, even in the hard stuff!
The small print: I’m not a doctor, psychiatrist, or otherwise have any credentials to write this post except that I’m in the ‘trenches’ so to speak, as my husband and I parent two children with attachment disorders (one formally diagnosed with RAD and the other with similar challenges and attachment issues) and nine more kids. This is written from the perspective of our family with the knowledge and collaborative efforts of many other parents of children with attachment challenges or diagnosed disorders. That said, here we go...
A huge THANK YOU to Meredith for putting her thoughts to print and sharing it with the rest of us!!!