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!"

Thursday, July 21, 2016

GOOD NEWS Check up!!!

Today Angela had a check up with her liver specialists and surgeon. First she had an ultrasound to check the bypass they put in back in April. Her liver looks great and now, for the first time in her life, is  normal size for her body! There has been A LOT of revasculature of the tiny vessels, so more and more blood is being carried to her liver. This is exactly what we wanted to see.

Angela gets a shot of Lovenox, a blood thinner, every morning. She has done very well with them, but it is no fun. She has major sensory issues about the alcohol wipe because she doesn't like stuff on her skin. The shot itself burns and leaves giant baseball-size bruises on her arms and hips where she gets the shot.

Today the doctors gave Angela some good news!

Dear Kim

I'm going to address you personally, since you are obviously obsessed with my family and would like to pick apart my parenting. Unfortunately I accidentally hit "delete" on your most recent comment instead of publish. (reflexive action, as I get a lot of spam and your comment was mixed in with several of those and my finger was clicking away. Sorry about that.)

You don't like that I used the word "inconvenience" about having to deal with my son's chemical dependency issues. As has happened many times, you missed a very large point in my post, which happens quite frequently in your comments.

*edited to add* one of the many things discussed in family therapy with chemical addition is the affect on the rest of the family, INCLUDING "inconveniencing" family members by the addict's choice to use drugs. You said went through alanon as a kid, but have you as an adult? Because it is often discussed.

Yes, it is a HUGE inconvenience to me to have to drop everything in our lives to deal with the bullshit of addiction in an adult who hasn't wanted contact with our family for 10 years. I did it anyway, because he is my son.

It is a HUGE inconvenience to Dean, who is not his father and has never had a relationship with my son - because of addiction - to drop all of his plans for a weekend away, something incredibly rare for him, to deal with the addiction in my adult son who hasn't wanted contact with our family for 10 years. The lack of contact was because of addiction.  He did it anyway, because this is my son.

It is a huge inconvenience to me to find someone to help Dean for the day with 6 kids. Because yes, he can absolutely manage the kids on  his own, but he was also in the middle of a major project here that NEEDS to get done, and he can't do any of it while watching two toddlers (Amos and Audrey are virtual toddlers)  and keeping he peace among the other 4. So yes, I had to find someone to help Dean, with very short notice, for an entire Saturday in July. This is NOT easy to do. But I did it anyway, because this is my son.

It is a huge inconvenience to me to drive my giant van 12 hours over the course of 3 days (that's a drive to Chicago and back) when I wasn't budgeting to be spending that kind of money in gas. I don't have another vehicle to drive. But I did it anyway, BECAUSE this is my son.

Do you get it now????? That it doesn't matter that something is a major inconvenience BECAUSE this is my son, so as a parent, I did it ANYWAY because that is what parents do.


Thankfully I did it. Because I was able to hear some great things from my son. About lots of different things. Most importantly I was able to hear where he has "been" for 10 years and how well he's doing "today" as he makes his plan for "tomorrow". I used quotes because I'm talking figuratively, and you might miss that.

I blocked you on FB a couple of years ago, and I'm going to tell you now, I'm done with you here too. I will not publish your comments anymore. You have nothing good to say, and normally I don't have any problem publishing comments from people who don't agree with me. (I have been posting most - not all - of yours for years, haven't I? Some you have written just to push my buttons and I deleted instead of posting them.) I can have sensible discussions with people without having to agree with them. But that's not why you're here, is it? You have nothing good to say about my family so WHY DO YOU POST HERE??? I don't normally post comments from trolls (because there are plenty of those in the adoption community) but have chosen to post most of yours because I know (knew) you in real life. But I am breaking up with you on my blog. I am done posting your comments. I will not post even one more. Go ahead and post. When I see a big long paragraph of a comment with your name attached to it, I'm deleting without reading.

Sunday, July 17, 2016

The Refresher Course

Yesterday was exhausting.

It didn't have to be.

I could have chosen not to go.

After all, he is 29 years old and responsible for his own decisions. Why should I go and sit through what I already know? It is a huge inconvenience to make the two hour drive, spend the entire day dealing with heavy emotional stuff, then drive two hours home.

Because it is "family education day" at the treatment facility, and I am his family. I am his mother. I went.

And I had to talk about tough stuff. About the decisions I was forced to make as a parent. About my past.

When I was around 10 or 11, until I was around 14 or so, I spent a lot of time in Alateen. I learned at a very young age that whatever choices were made by my loved one were not my fault. I was a child and had done nothing to make that person choose to abuse their chemical of choice. I learned it wasn't because I was a bad kid. I learned it wasn't because I didn't clean my room. I learned there are NO SECRETS, and that hiding the problem just added to the problem. I also learned I never wanted to use drugs or alcohol because I never wanted to put my family through all of that.

Then I became a teenager myself, and at age 17 I joined the army. In the army in 1985 I could drink as much as I wanted as long as I wore my uniform to the bar on base. I had a lot of fun, but I also found myself in a few scary situations. I was drunk nearly every night of the week, staggering back to my barracks with my best buddy. At some point I realized I was headed the wrong direction and stopped. I remembered things from my life I didn't want repeated. When I came home my friends were doing a lot of drinking and partying. Sometimes I joined in, and sometimes I opted not to. One night my boyfriend and I were at a party. There were lots of drugs being passed around and I had to make a choice. Be "cool" and give it a try... or walk away. I left the party, and my boyfriend, behind and never looked back. I was 18 years old.

My first son was born one week after my 20th birthday, and my second just 15 months later. I can't give all the details of the next several years, because although there should be no secrets about chemical abuse, some people from my past have a right to tell their own story. I, and my kids, are no longer involved with them so they have a right to keep their own secrets. Suffice it to say, my kids were exposed to situations that went against everything I wanted for them. I got them out as soon as I was able,  but not before the damage was done.

As my kids became teens, and I a single parent of kids struggling with budding mental health problems, I had to fall back on the learning I had done at 12 years old. That even though these were teenagers, and I was giving them the tools I knew to give them, they still made their own choices. I got them help whenever they would cooperate, and I remained as available as possible for them. Before I knew it they were adults, and my ability as a parent to help them was significantly limited.

And I cried. Oh how many nights I cried for my boys, but my mother tears couldn't fix the problems. I watched each of them sinking, then swimming back to the surface trying to grab my hand, only to sink below the surface again. Eventually one found his "rock bottom" and accepted help, but the other.....my heart broke into a million pieces whenever I saw him. I leaned heavily on God, asking...no begging him...to keep my son safe. When we would go weeks, then months without hearing from him I would check the area jail rosters, and google his name looking for some hint of information. My best days were when I found him on a jail roster. I knew that he was in a bed, had food - even if it was just a balogne sandwich - and wasn't lying in a ditch somewhere. Anytime there were unidentified bodies on the news I read the descriptions carefully. When there were surveillance videos of robberies in the area I knew he wandered, I looked close at the person's build to see if it was him.

For 10 years, this has been my life. While some of you think I'm all 'wrapped up" in the kids in my house, I can assure you, there have been countless hours spent worrying and looking for that one kid. On his 26th birthday I wrote this to him and posted on my Facebook page, hoping he would login and see it:

26 years ago, at 4:18 a.m on July 3rd, 1987 I looked into your eyes for the very first time. I was just 20 years old. I will never forget the way you felt in my arms. Your baby smell. The way your hair felt. The sound of your cry.  You made me a mother. You are something to me that nobody else can ever replace. My first baby. My first son.
You were the easiest baby ever. So calm and quiet. Always content with the world, and yet so inquisitive.  
Our lives were never easy. I guess God had lessons for us we couldn't learn any other way. I tried so hard. I tried to always be there for you, to pick you up when you fell. To let you fall on your own when you were ready. To keep you out of harms way. Angry when I couldn't protect you from everything.   If only you knew how many nights I have laid awake crying for you. Praying for you. Asking God to please just keep you safe one more night. If only you knew how much I miss you.
I'll never forget you learning to pedal your first trike, your blonde hair blowing in the breeze, your big blue eyes looking back to make sure I was right behind you. "Coming Mommy? Coming?" you kept asking. I've always been right behind you Noah. I've never left. I've always been right here. I will always be right here.


And then one day a few months ago, on the day of Angela's life-saving surgery,  came this:



Note: I chose to share the headline, and mugshot, because it is public information and easy to find. And, there are no secrets about drug use. My son is a drug addict. *

Do you see that darling little boy on the tricycle? Do you see the strung out man below him? That is the stranger I drove to treatment on June 15th. I can't even fathom how that adorable, innocent little boy who always wanted to know I was with him had morphed into THAT person!

And so, yesterday I attended that refresher course.  I was reminded, once again, that its not my fault. That I did not do anything to cause his problems. I wasn't a bad or neglectful mother. Tomorrow we will sit down, face to face with his counselor, and have a very painful discussion. All things that need to be will be brought to light, both good and bad. As a 12 year old girl I wrote, then read the required letter to my loved one. Today I have written my letter that I will read to my son, and he will read  his letter to me. There will be things I don't want to hear. There will be things I need to hear. There will be emotional pain, and there will also be healing.

It is up to him from here. Whatever  happens from here is 100% up to him.

If you are a parent, and suspect your child is using drugs or alcohol, even if they are an adult, please, get yourself into an alanon meeting. Learn what it means to be "co-dependent". Learn what it means to be an enabler. Learn how to take care of yourself, and how to love your child through their addiction. Learn to find help so you can find healing.









SaveSave

Time hop after Cancer



Every day the Timehop app reminds me of some event over the last few years. For some things, I don't need a reminder. Like a birthday or anniversary their dates are stuck in my head.

July 17, 2014

That date marked my last round of chemo. It was the hardest of all my rounds. Not just because chemo side effects are cumulative, but because I had opted to skip the Neulasta shot that caused so much of the bone pain. Normally I bounced back from each round in about 10 days, but that last one took six weeks.

This week I will go for my two year check up. Once you have breast cancer, you are forever a cancer patient. Forever. Its possible you will will never develop breast cancer again, or you could within just a few months. Because my risk of recurrence in the first five years is relatively high, my check ups always come with a lot of anxiety. Because I've had a mastectomy, there will be no lumps to look for. Because I have implants there will be no mammogram. There is only blood work to look for tumor markers, and PET scans to find active cancer cells. If cancer is found, I will automatically be stage 4.

But for today, I continue believing I am fine, I am healthy, and I am here. 

Update: Snails Pace

Amos my love. This kid has stolen our hearts completely. He is a character for sure! He can be naughty and adorable at the same time. He'll be 12 in just a couple of months, wearing 5t pants. His jawline and face are beginning to change, as boys do. A "tween" in a toddler-sized body.

In June Amos and Audrey switched to a different school with a different approach to teaching that will be better able to address their post-institutional needs and behaviors. I LOVED their other staff, it just wasn't a good fit for those two.  They are now in the same school with Abel, and the three kids make up one class.  The staff are spending the summer program getting to know the kids, and in the fall will have their new plans in place. So far this change has been very positive for all three kids! Before they didn't acknowledge one another's presence, but now are seeking out each other! Amos' behavior at school is already improving. At home he's just a happy guy!

Amos' previous family has decided they will support moving forward with the adoption plan, but they will not be paying any of our legal fees. Thank you SO MUCH to those who contributed to the gofundme, as well as the t-shirt fundraiser. We were able to come up with half the attorney retainer fees, and Dean and I scraped together the rest. We're hoping to have our last $2500 by August 1st. Since there are three states involved we expect this to be a slow, complicated process that quickly eats through our retainer funds. 

Sunday, July 03, 2016

T-shirts! T-shirts! Get your T-shirts!

My friend Lisa has started a T-shirt fundraiser for us. Proceeds go directly to our adoption expenses. I have ordered shirts from TeeSpring in the past, and I LOVE them! The sweatshirts are my favorites. When the weather is right, they're my GO TO sweatshirts. My kids all have 3:21 shirts and they are very comfortable and hold up to my kids's rough and tumble ways. If you would like to order a shirt, please CLICK HERE. Please, don't be shy about sharing. ;-)


Saturday, July 02, 2016

The Phone Call

It was one of the coldest mornings of the winter of 2014 in Minnesota. After a late night with Angela who was sick, I was buried under the blankets of our bed, sound asleep when the  phone rang at 6:00 am. I looked at the number but didn't recognize it. I was going to ignore it, but instead at the last second slid the green "answer" icon.

I waited a second before saying anything, you know, to just remind the person it was really too early to be calling people. It wouldn't even be light out for another 2 hours!

"Hello."

"Mom?"

My heart skipped a beat. I hadn't heard his voice in months. 

"Mom. I'm so cold. Can you come get me?"

"What? Cold? Where are you?"

"I'm in a barn. Mom its so cold. Please come get me. The guy left his phone on the back step for me to use but he told me he wants me out of here. Please mom. I'm so so cold. Tyler will know where I am. I'm at the barn in Waconia."

Tyler had spent the night with us. "Tyler, wake up. We have to go get Noah. Hurry, get up!" 

The sun hadn't come up yet. It had been snowing and drifting for the previous two days, and we made the 50 mile drive as fast as my minivan could safely navigate the roads. Tyler directed me to a dirt farm road. We drove a ways before he pointed. "Here. I think this is the driveway." It was hard to tell since it was drifted over. On the prairie, its hard to tell how deep the snow is if you're not familiar with the terrain. We could see someone had driven through the snow earlier, but it was starting to drift over again. It was a long driveway, and the thought of getting stuck in the cold, in the middle of nowhere made me hesitate.

But then I looked past the driveway and saw a small barn near the house. My boy was in there. 

"Hang on!" I said, as I punched the gas, plowing through the snow drifts, praying with each slide to the left and right that we woudln't get stuck. 

I pulled into the central area between the barn and house, just as he appeared in the door of the little barn. I got out of the van and went to him. His face was deathly white, his teeth chattering uncontrollably, so cold he could barely speak. I hugged him, and realized he was wearing several layers of sweatshirts.

He started sobbing. "M-m-mom. Its so c-c-cold. What t-t-took you s-s-so l-l-long? I c-c-couldn't stay aw-w-wake anymore b-b-but I w-w-was s-s-so afraid to f-f-fall asl-e-eep." 

I pulled him to the side door of my van. "Get in. Get all those shirts off. They're holding cold air and you need the heat of the van to warm up." I helped him pull of layers, shocked at the skeletal figure that was my son.

"C-c-c-can you g-g-get m-m-my s-s-s-tuff?"

I looked at Tyler, and together we got out of the van, shutting the doors to  keep the heat inside while we went to retrieve his things from the barn. 

To this day I wish I'd had the forethought to take a picture. Somehow I knew years later I would want it, to show him on the days he needs a reminder.  Inside the barn was a small room, about 10x10. I don't think it was insulated, just tin walls. I guess I don't really remember. What I DO remember were the conditions. A bare mattress on a dirt floor. Well, I'm assuming since it was a barn it was a dirt floor. It wasn't visible under the foot of empty booze bottles and trash. Just the thought turns my stomach into knots that my kid was living there. My "kid" who was 26 years old.

Tyler and I gathered up the few things he wanted. When we returned to the vanI asked when he had eaten last. "Two days ago my buddy bought me a couple hamburgers from McDonalds."

We got him home where his clothes were immediately deposited in the washer and him in the shower. Once he was warm, clean, and had a full belly he went to bed. He slept for the next 28 hours. Drugs will do that to you.

I prayed then he would come around. That he would realize this wasn't a way to live. That *this* would be his "rock bottom". That as an adult he was responsible for his own decisions and couldn't blame anyone else. He could't blame me, his dad, his former step-dad. This was all on him. I knew not to accept any blame for those same choices, nor would I support those decisions if he continued to make them. Yes, I know all about enabling.

We had been down this road so many times before. We had a meeting, he, Dean and I. I layed it all out on the table once again. He was using and could not stay here. No questions. If he agreed to treatment I would help him get it sorted out. If he completed treatment and was clean he could stay for a few months while getting his feet back on the ground. The choice was his.

He left the next day.

He chose the drugs over love from his family. That is the lie a drug addict believes, that the drug is better. Always better.

Being the parent of someone with a chemical addiction is not easy. You love your child and don't want to see them fail while at the same time knowing you cannot enable the behavior. But where is the line? What is "enabling" vs "actually helping". If you are living with someone with self-destructive behavior and/or addictions, get yourself into Al-Anon or similar group, and learn about enabling and co-dependent behavior. Being supportive of your adult child who is using is NOT the same as enabling, but being supportive does NOT mean you have to let them stay with you while you fix it for them. You, the parent, cannot accept blame for the decisions of the grown adult sitting before you. I do not accept responsibility for the decisions of my adult child. His choices cannot be blamed on anything from my life or his father's life. They are his own choices and he alone has to accept responsibility for them. If he is making a concentrated effort to fix his life then he has my full support. But he has to be sober.

If you are struggling with a teen or adult child who is using, please get support for yourself. Learn about enabling and co-dependent behavior. You can read more about it here.



Tuesday, June 28, 2016

Happy birthday to me!


Its my birthday today. Another year older. I'm 49 today.

49.

So close to 50.

I have never been shy about telling my age. I have lived what seems like three different lives, maybe even four, each birthday feeling like a badge of honor. But I have discovered once you survive a life-threatening illness, like cancer, birthdays take on a whole new meaning.

I am alive today!! Life is GOOD! Even if I was sick and still on chemo this birthday would important. Another year here on this earth, with my family and friends, loving my children, loving my Dean.

The birthday wishes have been flooding in on social media (the Facebook creators were brilliant at making us feel special!) and it has been so fun to see greetings from people I rarely get to talk to, and those special words from close friends and family who mean so much to me. Enough that I'm sitting here in a doctor's waiting room with a tear running down my cheek.

Thank you everyone, for celebrating this special day with me. With us. Makes me want to have a bonfire or something. 

Sunday, June 26, 2016

The long version...

Note: *Hitting "publish" on this post comes after much internal struggle. We're desperate, and nothing less.*


He first came to us for respite in March of 2015. A family in crisis, a marriage dissolving. Parents who were at their wits end dealing with emotional stress combined with institutional behavior they couldn't manage. Two weeks, then he went home. The other family couldn't believe how much more "settled" he was in just a matter of two weeks. Even his school staff commented on the difference. His sign vocabulary had increased dramatically, and he seemed truly comfortable. He loved it here, and we loved having him. He fit right into our family. But his coming wasn't for a new family, the purpose was to give his family time to pull their lives together a bit. He was a guest in our home.

A few weeks later we were asked if we would take him permanently. We said yes. Power of Attorney papers were drawn up so that his medical and educational needs would be met. He could get services here that had been lacking, in addition to a family experienced in managing his many institutional behaviors. Releases signed so all medical and educational records would be transferred. Thirteen months he has been here.

He has done very well here. We didn't really expect it, given the level of institutional effect on his little self, but he has attached to our family. He has bonded with several of the kids, and he has bonded with Dean and I. This is especially surprising given his fear of men when he arrived here. You can see his pure JOY with us in the pictures from the beach trip back in February.

Clearly, in the past year, there has been NO intent by the other family to parent this child. Never an inquiry into how he was doing. No questions as to where he was going to school or how it was going for him. What doctors did we bring him to? Was he healthy? No financial support for him at all. Nothing. I voluntarily sent pictures of him living life. An update that he had learned to feed himself, dress himself, potty training, etc. Those updates were never asked for, I just sent them. Surely they would want to know he was ok? Never a question where we were moving with him. Nothing. No desire to know. Hands were washed and dried.

His adoption should have been finalized ages ago, but couldn't be because of one loose end on their side, and attorney fees that weren't paid as agreed. Until Thursday. Thursday the other family paid the retainer fee to the our attorney. Clearly their desire was to get this process done once and for all!

The very next morning.  Friday. After a full year, one parent decided maybe this might cost them too much in legal fees so they want him back. Their reputation might be damaged, never mind that he has been out of the house for a full year!!! So much documentation we have about him NOT being wanted. After paying our retainer, demonstrating they want us to complete the adoption, suddenly "Oh wait. Never mind, I want him back now." On the other hand, the other parent, seeing how well he has done here, has granted us a new full Power of Attorney until the matter can be resolved.

Now we have a dilemma on our hands. Sure we take the easy way out. We could throw in the towel, avoid a legal battle and send him go back to a situation where he's not truly wanted. But what is "right" is not always the easiest path, is it? No, we are not willing to do that. We are not willing to sacrifice the welfare of a child to save face for the parent who didn't want him, who couldn't manage him, who is in over their heads with other adopted kids still in their house. No, we're not willing.

And so we come to you. I know we will now likely be blacklisted in the community who doesn't know all that has transpired. Who has listened to "Woe is me" stories over the past year but never questioned. Time is of the essence with a child's welfare at stake. Over the weekend we will need to raise $5000 for the attorney retainer fee, plus an additional $5000 to cover additional fees when those first funds are quickly eaten up by the attorney. $10,000. The whole situation sickens me. We just bought a new (to us) house with every penny of equity from the old house used as the down payment, and to fence the yard to keep everyone safe. We had only a few hundred left over to set things up for the kids, with a plan in place to rebuild our safety net over the next few months.  After all, we weren't expecting a legal battle to start today.

If you feel inclined to help us...Nothing goes directly to us. Funds are being collected by a trusted friend, to be paid directly to our attorney. There is a chance we will lose this battle. That even after spending thousands in attorney fees he will have to go back. We're not worried about saving face. We're about a boy.






Saturday, June 25, 2016

Parenting out of love or preserving one's reputation, who pays the price?

An adoption battle. A parent's nightmare. Unexpected attorney retainer for actions that must be taken immediately. Monday. Because we're not about "saving face", we're about a boy. I want to tell you so much more. I want to tell you about a culture of adopting kids with special needs when parents have no idea what they're doing. I want to tell you about parents in over their heads, trying to do whats right. Then I want to tell you about the other side. About abandonment. For privacy reasons for all parties involved we can't give any further details.

If you feel so inclined to help, all funds go to a trusted friend, to be paid directly to our attorney.



Wednesday, June 22, 2016

The Stranger in My Car

A few weeks ago I was called by a county caseworker. Given my name by an inmate in her county jail, she asked for my assistance in getting him from the county jail to a chemical treatment facility. It would require a full-day commitment due to distance, but I said yes. This person is estranged from his family, and having experienced that before I understood how difficult it can be to advocate for someone when they didn't really want the help.

I arrived at the county courthouse to sit through the person's public sentencing hearing. When he walked in I was taken aback. His body spoke of hard drug use: blonde, with a fresh haircut and shave, his eyes were bright and clear yet he was the thinnest human I had ever seen aside from the orphans I have met over the years. He had been in the county jail for a couple of months. I don't doubt he had actually gained weight during his stay.

His public defender explained to the judge she had spoken with his extended family about his history, how he started using drugs at the age of 15 or younger , first recreationally, later as a means to escape the situation his family had been involved in. He struggled with clinical depression without the aid of medication. He spent his high school years in alternative learning programs designed for "at risk" kids due to his mental health needs. The judge accepted the recommendation of the prosecuting attorney and stayed his sentence of 58 months in federal prison, instead sending him through "drug court" and the county's new chemical treatment program. Although only two years old, with the very intensive counseling and on-going supports they have in place, this program is seeing the highest 1 year sobriety rate of any similar program in the country. So, so lucky this boy. I prayed for him. That whatever got him to this point would be helped with this program. That he could feel the love of his family he didn't want contact with. Why didn't he want contact with them?

He loaded his meager belongings into the back of my van. A backpack and small box of keepsakes was was all he owned. We mostly rode in silence, me making small talk here and there as I tried desperately to talk to this stranger sitting next to me, but he was withdrawn and angry over some situation that had happened just before the hearing. He seemed resentful of my help, and I wanted to tell him how difficult it was for me to get there. I realized although he is about to turn 29, he seemed much younger. When teens start using drugs, their brain development stops at that point. This "kid" had started using at 15, which matched his current, very teen-like attitude.  I wanted to ask "How did you get to this point? "  and "Why don't you talk to your family?" and "Is  this your "rock bottom?" But this was his thing. He is an adult, after all.

We arrived at the treatment facility.  He followed me through the automatic sliding door as I gave his name at the front desk. I turned to introduce him and he was gone. Through the glass doors I could see him on the railing along the front walkway, his hands shaking as he lit a cigarette, his knee bouncing in nervousness. The staff intake person, John,  gave me a knowing look. "Here's a cart to bring his things in. I'll be right here if you need me."

The cart was a bit awkward to steer, and I knocked it into the side of the building as I approached him. "Lets go get your things." I said, as I dragged it past him, opening the back of the van. I stood behind the open doors and took a breath. "Please God. Help me help him through this. Give me the words. Give me wisdom. Show me when to speak and when to back off." Like a young boy he watched as I put his things on the cart, reluctantly following me back inside the building.

John greeted us again. "We'll be going to the in-take area..." and I could see the kid's eyes flashing panic as John listed the items not allowed in. "We're big on family involvement here. There are several times over the next few weeks when you can invite family to participate in counseling sessions." I hoped he would involve his family. It was all up to him now. "Well, shall we?" John asked, as he gestured toward a locked door.

"Do you want me to go with you?" I asked? Oh, how I hoped he would say yes.

Without looking at me he mumbled his answer "I know you have things to do. Just go."

I understood. He was upset, maybe even embarrassed, by where he had gotten himself.

I gave him a hug anyway.

This stranger. I hugged this stranger, feeling his bony shoulders as my stomach twisted itself into knots, tears threatening to spill from my eyes.

I sat in my van and cried the tears known only to mothers with broken hearts.

My son.

My baby boy.

Please God, help him.






Wednesday, June 15, 2016

Loving Home

It's safe to say we are absolutely loving our new house and yard. Our summer is going to look a lot like this.

Tuesday, June 07, 2016

Doctors, please listen to the parents!

Remember Angela's whole liver craziness? Remember the first time we found her in a coma, she rode by ambulance to the hospital, and I got raised eye brows over the mysterious coma?

Remember when we found her in a coma the second time? Then the questions started about who could have put something in her tube. And I refused to do her cares or feeds while she was in the hospital because I knew...somehow...it went back to when Angela's gtube was placed.

Our pediatrician was recently at a conference of the American Academy of Pediatrics (AAP) in Minneapolis. One of the speakers discussed "Listen to the Parents", and this slide appeared on the screen.


Our pediatrician was excited. "Hey! That's my patient!" 

On the far right side, under "discussion", can you read the last sentence? It says, "...leading to the unexpected diagnosis and proving that her parents were right all along." I won't lie. It feels good to be validated. 

Apparently Angela's story is making the rounds. I hope that physicians are learning something from it. I know I have learned to trust my instincts even more. 

Monday, June 06, 2016

20 years

20 years ago today, listening to the sound of a helicopter land on the roof of the hospital where I lay on an operating table, the doctor pulled her from within me.

 There would be none of those first, lusty newborn cries. There was only silence.

The "ooh" and "aahs" she should have been greeted with were replaced by hushed whispers in the corner of the room.

Helpless, with the doctor's hands still inside me, I carefully asked, "Why isn't my baby crying?"

I would spend the next 20 years asking "Why".

Why is she breathing when you said she never would?

Why is she celebrating her first birthday when you said she never would?

Why is she walking when you said she never would?

Why is she talking when you said she never would?

Why is she reading when you said she never would?

Why is she so happy when you said her life would be miserable?

Why has she been so wonderful for our family when you told us to hide her away?

Why do I feel so proud when you said she would be an embarrassment to our family?

Why does everyone who knows her smile when she is around?

Why does she find delight in even the smallest of life events?

Why do I find myself wiping tears of joy from my eyes on this day, 20 years later?




Wednesday, June 01, 2016

Because PURPLE

Dean and I have  needed a new mattress for a couple of years, but it became most apparent after I finished chemotherapy. My back started to be quite a problem, especially in the mornings when I first got up, or after sitting for longer than a minute! Then in February when Angela was in the hospital I had a terrible night on one of the hospital parent beds, which landed me in the orthopedic office. It was discovered my entire spine is full of arthritis. Thank you Chemo, for the gift that just keeps on giving! 

Anyway, we kept saying we would get a new mattress when we sold the house, but neither of us wanted to spend thousands of dollars on a mattress! Last year we stayed at a Holiday Inn Express, and that mattress was the best thing I had slept on EVER. I researched that mattress, but couldn't bring myself to tell Dean the price. (over $2,000). Then I stumbled upon the mail-order mattress industry! After more research I had settled on one particular brand, and was just getting ready to purchase it when PURPLE was brought to my attention. 

I dug. I read. I compared thousands of reviews and watched video comparisons of the three main mail order mattresses. Finally, we settled on PURPLE. 

I placed the order on May 13th. I received an email with a video attached showing exactly how to unwrap the mattress when it arrives. On Youtube we had seen videos of other people opening their mattresses incorrectly and having a really tough time wrestling their mattress onto their beds, so we felt like we were well prepared. LOL 

The mattress shipped via UPS, and I was easily able to track it. Finally the UPS truck pulled up at  noon on May 31st. I raced to the door!

I knew from the UPS tracking this thing weighs 140 lbs, but I really needed a nap, and I really needed a nap on our new mattress! Only I'm not very patient and didn't feel like waiting until Dean got home from work. The company asks that you NOT try to move this by yourself. Note to self: I will never be able to commit a crime that involves hiding a 140 lb object! 




I tipped it over so it fell inside the door. 



Now what? I have to get it up 1/2 a flight of stairs! There are several handles on the packaging so I managed to stand the giant PURPLE thing up and get it onto the stairs. 

Getting it to the top of the steps was...well...interesting. But I am determined! 



Whew! That was TOUGH, and I needed a drink at that point. But the hardest part of getting it up the stairs was done, so there was no way I was quitting! Dragging that 140 lb thing to the bedroom wasn't easy either. 


Thankfully getting it onto the bed wasn't too difficult. 


One end of the packaging contains a zipper, and behind it is your tool for cutting through the packaging. Its a very sharp razor, so don't let your kids get hold of it. 


You also get some eye thingies, (do people really use those things?) and samples of the magic purple stuff that makes this mattress so special.


Cutting through the packaging is a breeze with the tool provided. It even cuts right through the zipper. 






Unfortunately this is where I discovered a problem.


Needless to say, a damp foam mattress isn't going to be staying in the house. Can you imagine the mold growing in there? 

I called customer service and the automated system said I was #7 in que, with the wait around 15 minutes. Finally at 22 minutes I was told I was next in line. Just a few more seconds and I was rolled over...to another recording! This one said they are very busy and to please leave my name and number for a call back. Only I wasn't able leave a message because "this mailbox is no longer able to receive messages." because it was full. 

Grrrrr

I hopped on their Facebook page and was very quickly able to connect with a customer service rep. who said with the Memorial Holiday weekend they were a bit behind. The rep instructed me to send an email to their customer service department describing the problem and they would send me out a new mattress immediately. I don't yet know how long that takes, or how they go about picking up the damp one, or who hauls the new one up the stairs because...yeah...I'm not really wanting to do that again! 

Anyway, the mattress, though a little damp, stayed on our bed because I was determined to sleep on that thing! 



The first thing I noticed was I can lay flat on my back and text people, which is something I can't normally do because my lower back hurts to bad. But on this mattress the support seems to be in all the right places. Because I was anxious about some things yesterday I didn't sleep very well last night. However, I didn't wake up this morning with my back hurting, OR my hips. Usually I have a really tough time getting out of bed in the morning, but not today! Dean did say his back hurt a little bit this morning, and it doesn't usually. I'm very curious to see how we sleep tonight!

Oh, I also got a free PURPLE seat cushion with my purchase, but its still in the box so I don't know what that's all about yet! LOL






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Monday, May 23, 2016

We did it!

We completed the move, and it was as smooth as moves can be, I guess! Several amazing people came to help out, and we could not be more thankful. I honestly don't know what we would have done without them. Thank you SO MUCH!!!!!! Also some good friends who took 5 of the kids for the entire day Saturday so we could move without tripping over kids. They even made us an amazing dinner so we could refuel afterward. We have some pretty amazing friends.

The house is everything I've been dreaming it would be the last couple of months. We are absolutely over the moon to be in this space. So much more room to spread out, an AMAZING  yard for the kids, and a beautiful neighborhood. Several neighbors have come to introduce themselves, and we're also now living in the same neighborhood as several other families who have kids with a variety of special needs.

So far we've only lost one dog - twice, and one kid - also twice. The dogs are now in training for the invisible fence, and installation for the kid fence begins tomorrow. I'm sure I'll have bald patches on my head before its completed.

Do to some kind of communication error, we have no internet access at home until Friday so I'm currently sitting in my rental car at Starbucks. Rental car? Why yes, because the week we moved my new van was re-ended by a teenager on her cell phone, so the van is in for repairs.

And now, I must return home to Boxland, where every few minutes is like Christmas all over again when I find things I forgot we had! 

Wednesday, May 18, 2016

The New Beginnings

Our family is preparing for a lot of new beginnings. Putting an era behind us, something many families do. A move is a new start, right? Today we are leaving even more behind.

Today Angela had a swallow study. Let me give you a Reader's Digest version of the past  year.

Angela has always had trouble swallowing. As an infant and toddler she had a tube because she couldn't swallow liquids without aspirating them into her lungs. Then around age 7..or maybe 10...she was diagnosed with cricopharngeal achalasia. Lets just say, it is a really bad swallowing disorder. At 14 or so it got much worse and we had to seek treatment in Boston. (we live in MN).

We had 19 years of weird medical problems, manic behavior, aggression, seizures, stroke, TIA's. All chalked up to "well this can be part of Down syndrome." We swallowed that pill and always moved forward. Angela was on a slew of antipsychotic medications.

Then in April 2015 she developed aspiration pneumonia. Then again in July...and September. We did a video swallow, stunned to find she had lost the ability to swallow ANYTHING safely. Absolutely everything went into her lungs, and solid foods stuck right in front of her airway. Her swallow was completely uncoordinated and dangerous for her. We were devastated, and telling her she couldn't eat anymore was beyond hard.

In October she had a tube placed. She entered the hospital her peppy, sassy self, and left on her very special formula depressed. She stopped smiling and started sleeping all the time. We called it depression until one day she wouldn't wake up. We found her on the floor of her room, face down in the carpet. I thought she was dead. She wasn't, she was in a coma.

And ambulance ride. Can't get an airway. Intubated. Weird IV line thingy jammed in her leg (what the hell was THAT? It looks weeks to heal!) 24 hours and she was awake and smiling. Nobody knew why, but I suspected it was some kind of reaction to that amazing formula we put her on.

Two weeks. Another coma. Lots of head scratching and even some finger pointing (Maybe we drugged her?) I refused to take her home until they figured it out. I told them to give her that formula, there was a problem, I knew it. A call to metabolic specialists lead to the first ammonia test, which was the super fast ticket to the Intensive Care Unit and a rescue drug that would clear the ammonia from her blood....at the risk of killing her kidneys.

A whole new life of protein restriction because her liver couldn't process it. Crazy formula and drugs to the tune of $30,000 per month. Potential rare disease diagnosis (OTC deficiency) while we waited for the necessary genetic testing. More ICU stays. More confusion. No longer responding to the rescue drug. One smart doctor who never stopped digging, on a whim ordered a liver scan.

There it was. Abernathy Type II malformation. The rarest of rare liver malformations. Blood not going where it needed to go so the liver couldn't do its job. A move to a different hospital who would know what to do. They sent us home while they researched a possible fix. Consulting doctors all over the country to come up with a plan.

April 8th. An experimental procedure they've never tried before. It worked!!!! She is a whole new person!! Manic moods gone. Aggression gone. Seizures gone. Happy. Always smiling. A totally new person. Maybe her swallow was better too? Ammonia affects muscle tone and control, maybe it was the cause of the swallowing problems? It was a long shot. We started letting her eat more. Drinking liquids. She was doing it without developing pneumonias. No sputtering. No choking.

And then today. A new swallow study. Truly stunned.

She passed.

100% oral eating as of today. She is whole again.

She's not done. She has one more surgery that will be done in September. It will be the final fix for her liver, but it will be much less involved that the surgery in April. Her gtube will stay in place for a full year. She needs stay pneumonia free, and make it through the next cold and flu season without problems and then we can pull her tube.

It two days we will move to a new home. We are leaving far more behind us than this house. We're leaving behind the nightmare of the past many years. Two really. We have had two years of hell on Earth - cancer, comas, frequent and long hospital stays - and we're ready to leave it all and start over. Praising God for the miracles he has brought to our family.



Saturday, May 14, 2016

Six Days

In 6 days we're moving. Our post institutional kids who are in the only home they have ever known, are having problems. Some were bounced from one horrible institution to even worse places, suffering severe neglect and abuse at every one. One was in 3 institutions and two homes by the time we adopted him at age 10. Some have not yet recovered from being ripped from their home countries, language, smells, people, and everything else.

There are a lot of language barriers. All of the adopted kids are non-verbal and communicate using broken ASL, since none ever developed a first language. We don't know exactly what they understand since the cannot relay it back to us. We're reading lots of books, with lots of pictures about moving and packing. We look at pictures of the new house, talking about who will sleep in which room. We drive past the new house near every day (sorry to the sellers who I'm sure feel as if they're being stalked!) talking about the day we will move there, sleep there, cook dinner there. But, with each box and item placed in the POD, the anxiety level increases. One is doing a lot more scratching and acting out, and isn't sleeping well. Another hides in the basement therapy room, refusing to join the family for anything. Who can blame him when he's already lost one adoptive family and has only been here one year? Another spends most of her time moaning and rocking, her noise level increasing a little more every day. One who grinds his teeth non stop so badly that his gums have now started bleeding.

But I think how things would have looked if we moved one year ago, when I originally wanted to. (My timing is always off!) It could have been so much worse, but back in February we went on a family road trip, and the kids learned that although we were temporary nomads, we stuck together. My very good friend said something profound and her words have stuck with me.

When I think about you all away together and know as a family how important that is, it just makes me smile. For each of those kids to know that this is their group, these are the people who love you and have your back, with all the other people who have been in and out, etc, etc, etc, it just makes me happy.
And so we continue to put out small fires of anxiety here and there, and attempt to maintain our regular daily schedules. In just a few more days the kids will see our family's possessions emerge from the POD, they will watch me put their beds together and replace their bedding. All together. I will make a dinner and we will eat around our new table. It will take awhile to adjust, but I hope it doesn't take long for each of them to feel it again. Us. All in a different home, and still a family.  





Thursday, April 28, 2016

Orange and Pink

Angela is doing great! She had a few rough days last week, but seems to have turned the corner now. She isn't able to tolerate bolus feeds yet, (bolus feeds are relatively fast tube feedings) instead needing them timed for a full hour. I'm hoping to work her up to bolus feeds before she goes back to school next week. In the meantime, she is putting in appearances at various social events. Today her music group performed a couple of songs for the annual Highland Friendship Club's "Be A Friend" luncheon. Angela is in her element when she's mingling in a crowd or in front of an audience. This is Axel's first year in HFC and Angela was more than happy to introduce him to everyone. And I do mean, "everyone"!


In just 21 days we're moving to our new house!! This move was my idea. It took me eighteen months of seed planting to convince Dean this is a good idea. Mostly he didn't want the work that comes with a move. He had just warmed up to the idea when Audrey started having trouble sleeping. She and  Angela have shared a room for the last two years, but that didnt work so well once the not sleeping boycott started! We ended up moving Angela's bed to the basement playroom where she has been ever since. Suddenly we were out of space! We put the house on the market in June but had already missed the Minnesota spring real estate rush so the house didn't sell. We took it off the market in September, put on a new roof, new carpet in all the bedrooms and a few other little projects in preparation to try again this year. The first week of March we found a house we fell in love with! We listed our house March 11th and it sold the same day. We close both houses on May 20th!

The little kids are fascinated with the POD and spent half an hour exploring every inch of its emptiness.



Did I mention this move was my idea in the beginning? I remind myself with each box I pack. Moving with 6 kids, five of them being kids who can have problems with change is interesting to say the least! I think our trip back in February ended up being good preparation for the move. The kids understand we all go together, that they are safe, and that even in a different place all their needs are met, AND we're still a family! So far they seem excited about the move.

Because Angela has been a year without a space of her own I promised hers would be the first bedroom decorated. She informed me her new room colors should be orange and pink. Ideas quickly flooded my head, and Angela and I have been looking at bedding to go in her new room. Here are her favorites so far. Oh, and of course occasionally something else slips in there, like dolphins. LOL




As for Dean and I, we are both ready to move on. This house has served us well, and we have added 6 kids to it since we met in 2003. Now its time for someone else to enjoy this space. Let the packing begin!!! 

Sunday, April 17, 2016

She's home!

We had originally planned for Angela to be in the hospital anywhere from 2-4 weeks, allowing her liver time to adjust to it's new blood flow, and her gut restart all its processes. We're thrilled that she's home on day 10!!!! 

Our patient is currently resting on the couch, and has had nothing but Tylenol all day, which is pretty amazing. She has handled this whole event so very well, and accepting some very difficult circumstances. She was even thanking staff after having to do something unpleasant like start a new IV line. We are so proud of her! 

We go back to the surgeon in two weeks for another ultrasound and blood work to make sure all is functioning as it should. Then she'll have several months for her liver to continue to grow and adjust. It will likely be September before we look at the next, and what should be last, step in her liver repair! We are so very thankful for the amazing doctors who are treating her!

Another teenager in the house!

Thirteen years ago today, in the city of Belgrade, a baby boy was born. He was very much wanted, planned for and loved while in his mother's womb.

And then he was born.

Things changed from that point on. At two days old Abel was sent to live in the institution in Belgrade. Left alone for the first three days to "cry it out", a practice meant to teach babies that crying is ineffective, Abel didn't stop crying like he was supposed to. He spent the next 10 years surviving.

Then three years ago this week, Dean and I made our first appearance in his small, sheltered world. He was so tiny, yet SO STRONG!!!

That day we made a decision to love this little boy no matter what. It was his birthday, and the staff could no longer manage him. Had we not agreed, he was being moved to the adult facility in Subotica. Abel was not a happy little boy. He cried constantly and was a bundle of high anxiety. We knew that life with Abel would not be easy, but we chose him anyway.

It took some time, but Abel learned that our showing up every morning and afternoon was a good thing!



Let met tell you how amazing this young man is!!! He is the most observant young man I have ever met. His communication has bypassed most of the other kids. He is strong as an ox, and if you need something heavy moved, Abel is your man! He will happily lug that large object wherever you want it.

Abel is a happy young man now, with broad shoulders and the shadow of a mustache. He has found humor and joy in life. He knows there are people who love him, and he returns that love in his own ways. Although he appears to spend a lot of time in his own world, he is very much connected to the here and now. Although he is not attached to the people here, he IS attached to our home and routine.

This post can't be written without acknowledging the woman who sits weeping on the other side of the world. She has not seen Abel since the day he was born, but still, I know she weeps.

Abel, we are so happy God brought you to our family! You have added the element of surprise, and a special sense of humor. We wouldn't have it any other way!




Happy 13th Birthday Abel!!!!

Wednesday, April 13, 2016

Whew!

I can't believe it's been five days since Angela's surgery. It has both dragged on and sped past, all at the same time. Hospital time is like island time; everything happens at a different speed than the rest of the world. Sometimes it's too fast for me, and other times not fast enough.

I posted about the change in procedure for fixing Angela's liver. It has been nothing short of amazing! Without the need for any scavenger medications, Angela' ammonia levels have been in the 20s. Can you even believe it? The surgeon had warned me the incision would be large. Still, it was a shock to actually see it in real life. Then there is also a 6 inch incision on her thigh where the graft was harvested from. (pic posted with Angela's permission)


Now, I need to be clear. We have been allowing Angela to eat a few things by mouth for "social eating" as her doctors referred to it. Telling a teenager who loves food that suddenly she cannot eat a single thing does some pretty serious things to that kids' mental health, so we allowed a few things, all zero or very low protein items, and only very small amounts. Plus, when she is well, she is able to keep her lungs clear a bit better, particularly when her protein level is down. We even let her drink a little bit. BUT...that is on a good day! Not when she is high on narcotics that affect muscle tone and her protective reflexes, so in  her current state ZERO eating is allowed. Everyone here knows it. There is a band on her wrist, a sign on her door, and its written on the white board next to her room. Immediately after her surgery she was allowed to suck on toothettes to keep her mouth moist, and an occasional ice chip. As in, a single chip of ice which is nothing.

On Sunday we were moved out of PICU and into a regular room. A couple hours later I left the room to get some dinner. While I was gone one of the nurses gave her tylenol and her reflux meds by mouth. Angela was quit excited to show me her red tongue! I quickly brought to the nurses attention the fact Angela aspirates everything and there are NPO signs all over the place.

Later that evening I left the room to make a phone call. When I  returned Angela had an entire 16oz cup of ice chips in front of her that she was just finishing. (So yeah, great. Let her mouth and throat get nice and numb and expect her to swallow safely, while on heavy drugs!) I said something to the nurse who pretty much blew me off like it wasn't a big deal. I was NOT happy and said something to the charge nurse about it.

We had been waiting for Angela's GI system to wake up and start making noises so she could start getting food through her gtube. Finally it was making quiet noises so we were anxious for the surgical team to do rounds! Monday morning she was doing really well and there was talk of her being discharged by Weds! I had to leave for two hours to switch vehicles with Dean. Two hours. When I came back Angela was just finishing a yogurt cup. She was very exited to tell me, "I had yogurt, and pudding, and jello, and grape juice!" and stuck out her tongue to show me it was indeed stained purple. I immediately called the nurse it. "Why is she eating, and who gave her the food?" The nurse responded, "Oh, the surgical team lifted the NPO orders and said she could go to full liquids (pudding and yogurt count as full liquids) The nurses did not realize Angela's NPO orders had nothing to do with surgery. A few hours later her very wet cough started, so we were all pretty sure she had aspirated. I was very quick to get the patient rep, surgeon, charge nurse and nurse manager involved. Everyone is now on the same page, but I have not let this drop. This was a major negligent act on their part.

That was just the beginning of a very difficult night. Swallowing problems aside, when the doctors lifted the orders for Angela to get food, they did not mean an entire meal worth. "Take it slow" is the rule after major work like Angela had done. Angela's GI system rebelled, shutting down once again. Her abdominal cavity started filling with fluid, and by 2:00 a.m. she was writhing in pain and had bruising showing up all over her belly. The surgical resident was called who was very concerned with what was happening and suspected the graft was no longer working. He ordered an ultrasound for first thing in the morning. In the meantime we couldn't get Angela's pain under control and she was miserable the rest of the night.

Finally and ultrasound was done around 9:30 in the morning. The graft was still working but there was a LOT of free fluid in her abdomen. Also her liver didn't look right but they think its because the liver is adjusting to new blood flow so there are physiological changes happening to it. We came up with a plan to help with the excess fluid. Her poor belly looks like she's 10 months pregnant. Since surgery 5 days ago she has gained TWELVE POUNDS, which of course is all fluid!!! Thankfully the incision is holding tight, but because she is on blood thinners she now has bruising all over the place, with a couple softball size bruises on her belly.

Today (Weds) her belly is still huge, but her pain seems slightly better. Her hemoglobin is very low so they're watching close in case she needs a blood transfusion. But, when her pain meds are doing their job she is game to sit with volunteers in the playroom and do some crafts, or take a walk around the unit. She tires very quickly though. She's not yet ready to try food in her belly yet so we're still discharge is still several days away. When she does come home she'll be on daily injections of Lovenox to prevent clotting since she is at really high risk.

I think that brings us about the current. I'm hoping the next couple of days things smooth out a bit. I have Monday in mind for a discharge goal. I guess we'll see!


Friday, April 08, 2016

A functioning liver

For the first 19 years and 6 months, we didn't know that Angela's liver wasn't able to function properly. We spent 11 years treating crazy wild mood swings, *severe aggression*, seizures, grogginess, a stroke and eventually two comas before figuring out that she had an Abernethy type II malformation.

A normal ammonia level is 15-45 mcg/dl. When we first discovered the hyperammonemia, and they thought she had a Urea Cycle Disorder, our goal was to keep her ammonia levels under 50. With heavy scavenger drugs it was a struggle, but we could do it. Then suddenly in January she started spiking again, and not responding to the rescue drug Ammunol. A very intense and dangerous drug, with one dose being a 24hr IV drip in the intensive care unit, only she needed two back to back doses then spiked again. That's when they finally moved to additional testing and found she had the portal liver shunt.  The old goal was tossed out the window. Now it didn't matter how high her ammonia was, they told us not to bring her back unless she was having seizures or fell into a coma again. Really, not very comforting, but they needed time to discuss with other doctors around the country an come up with a fix for this. She was discharged from the hospital with her ammonia at 175. 

When we set a date for surgery, her medical team had come up with a plan, something that had never been attempted before. Over the course of 3-4 surgeries the would use a graft vein from her groin and gradually close the shunt, a little more with each surgery, allowing her liver time to adjust to this new blood flow.

This morning her doctor came in and explained they had change of plans, and yesterday met to discuss this new idea. It is what they did today. Without going into the long explanation, they used the graft vein to make a smaller shunt, small enough that with her next surgery it can be occluded in the cath lab without having to make another huge incision in her belly. They also found a bunch of tiny shunts that went "every which way" into and out of her liver, and were able to just clamp them without problems. 

What does all this mean? It means that Angela's liver now has adequate blood flow and should be able to cleans her blood without ANY of the nasty drugs she's been taking for the last few months. It means she gets her independence back. It **MAY** mean she will no longer need her feeding tube because her swallow is so greatly affected by the ammonia and that will no longer be an issue. So this afternoon, three hours out of surgery, her ammonia levels were checked. Her liver ROCKS!!!! Her ammonia is at 28!!!!!! That is without ANY SCAVENGER DRUGS!!!

Just the thought of all this, of the potential for her life, of this new young lady we have seen emerge from the ammonia fog....all of it...has me sitting here sobbing tears as I type. This is a true miracle for Angela. For us. 

Pain management has been an issue this afternoon. Now that I've updated everyone here, I'm going to take a nap while she has a few minutes resting quietly in the Intensive Care Unit.  I cannot thank you all enough for your love, support and prayers!!!!! 

Update from the OR

This morning we were given fantastic news. Angela's surgeons met again yesterday to discuss a new option for closing the Portal shunt. (Later I can make a video and draw it out) He felt it was very possible the could close the shunt in one surgery, but if not they could place a graft, making a smaller shunt, bringing the number of surgeries down to one or two, instead of 3 or 4. It would also mean an end of having to taking the horrible medication.

Just now they called from the OR. We're 4 1/2 hrs in. Unfortunately they weren't able to do it all at once, so have just started phase two, which is to place the graft. Still, before this it was estimated less than 1/2 the necessary blood was going through her liver. This step means her hepatic blood flow has increased significantly.

Friday, April 01, 2016

One week

I've been a bit quiet, I know. I need to post updates on Audrey. It has been a *very* long two months, with another couple of months go, getting her through this knee reconstruction. I don't think we were at all prepared for how physically demanding this process was going to be. It was not explained well to us at all. Getting Audrey in and out of the big van isn't easy, and that combined with Angela's liver related hygiene issues have left us largely home-bound. Like I said, its been a long two months.

One week from today, on Friday April 8th, Angela is scheduled for the first of  3-4 surgeries. This will be an attempt to gradually close the vascular malformation in her liver. This procedure has never been attempted before for this type of malformation. 

I'm pretty much scared.

The only thing that scared me this much was being told I have cancer. Actually, I think this scares me more.

I cannot convey to you the seriousness of this surgery. I cannot convey to you how high risk it is. But I can show you some more images.


Do you see the large blue vein that runs behind the organs? That is the Inferior Vena Cava, or IVC. It brings the blood from the body back to the heart to be re-oxygenated. It is huge, to handle the high volume of blood. In front of it lies the Portal Vein, which brings blood into the liver to be cleansed of impurities, like ammonia. Do you see, right at the base of the liver where the portal vein starts to branch out into the liver? In Angela that first branch is inside her liver. However, instead of just moving into the liver, it re-connects to the IVC right there. It is a very large connection, which causes the majority of Angela's blood to go straight back to her heart without being cleansed of ammonia and other toxic blood waste.

Once inside the liver, the portal vein branches out into hundreds of tiny little vessels, which bring the blood further into the liver so the liver cells can do the scrubbing. Remember the car wash? These are all the little stalls in the car wash where the individual cars get washed. Its a crazy mess of vessels.


Unfortunately in Angela's case, because the blood flow through her liver is not adequate, those collateral vessels are not fully formed. Some are there, just smaller than they should be (similar to a balloon that has never before been inflated), and some are completely missing.

When God created the liver, he created a miracle right there. And then God created doctors, giving them the smarts to understand all this stuff and taught them how to fix it when it  doesn't work just right.

Next week three smart doctors will take a small section of veinous material from Angela's leg to use as a patch. In this first surgery they will only close a small section, attempting to reduce the junction by about 1/4. As the doctors slowly close off the huge opening, blood is going to suddenly fill those little vessels. Angela's hepatic pressure (blood pressure within the liver) is already very high at 14+. When the blood flow inside the liver is changed, the hepatic pressure will either increase or decrease, depending upon how the vessels react. If the pressure increases those vessels can begin to rupture. This would cause massive hemorrhaging. If the pressure decreases, the vessels can slowly adjust to the new blood flow. So the doctors will place the patch, then sit back and wait for a bit, constantly measuring the hepatic pressure, with a goal pressure between 10-12 right now. Once they feels she is past the most dangerous time they will finish up the surgery.

Angela will have this surgery repeated 3-4 time over the course of several months, in the hopes the junction can be fully closed and the blood vessels start to function as they should. If successful, it will change her life. It will save her life. After each surgery the biggest risk will be massive blood clots. There is already an old, calcified clot sitting in Angela's portal vein. (The doctors think its possible it was a small piece of this clot that caused Angela's original stroke as an infant.) Angela will be on daily injections of blood thinners for the next several months. As long as it takes to through this process.

If this process does not work, the only option left for Angela is a liver transplant. We really don't want to go there.

I do have some specific prayer requests...

That God comfort Angela as this surgery date approaches. She is so anxious right now. She is starting to pick at her skin and hair, which is how she shows anxiety. I pray for her peace. A calm and quiet body. We also suspect her ammonia levels are climbing. She hasn't been herself.

...for Angela's health, between now and surgery day. She's currently fighting yet another sinus infection and started on antibiotics tonight.

 Angela is going to have a huge incision. They told me the same or similar to the incision if she was having a liver transplant. (whatever you do, DO NOT google "liver transplant scar"!!) I pray that God guides the nurses, doctors and myself to keep Angela's pain to a minimum, and what pain she does have is well managed.

...for wound healing. Some of you have known Angela long enough to remember the horrible problems she has with wound healing. When she was seven she was in the hospital from November to March with a huge open surgical wound that would not close! The doctors think its possible the high ammonia levels were responsible for the poor healing. Each of the surgeries she has for her liver will go through the same incision...again...and again...and again. I pray that God knits these incisions closed with a breath of healing.

...for the nursing staff. We had grown attached to the staff at St. Paul Children's Hospital. When we moved over to the University of Minnesota I didn't feel as comfortable with the care Angela was getting. I don't know if it was just a lack of familiarity with the staff and routine, or if there was truly a difference. Whatever it was, I was  not comfortable leaving Angela alone. My prayer is for Angela to be assigned caring, attentive nurses.

...for the schedule. This is going to be a long hospital stay. We were told anywhere from 3 days to 2 weeks in intensive care, followed by the very slow process of re-introducing food so her liver can slowly adjust to its new workload. This is going to be hard on our family and our finances.

...for Dean. He will be alone with the other kids a lot. We need to get PCA's set up who can help him a couple days per week. I pray for his stamina and patience. I pray for his health that can be affected by the increased stress level.

...for the other kids. Again, this is going to be very hard on our family. When mom is gone a lot it throws off the routine, and at least one of our kids does NOT do well with changes to the routine.

And lastly, for myself. I need to stay physically healthy to keep up with the insane schedule looming before us. The emotional and physical stress really took a toll on me a couple months ago, and I don't want that to happen again. My emotions are already a bit frazzled as I deal with my own anxiety about this surgery.

..for Dean and I as a couple. We have very good communication between us, and it needs to stay that way.

My blog is set up to post to twitter. If you don't already follow us there, you can find us under @GardenofEagan I'll be posting updates throughout this week, and during Angela's surgery day to keep everyone informed.