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!"

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. 

Thursday, March 31, 2016

When prayers are answered

Years ago, December 2011 to be exact, I traveled to Serbia to meet a little boy we would come to call Asher. During my visits there I met a tiny boy who touched me in a way no other child ever has. I blogged about him then, calling him "Ivan" to protect his privacy.

"Ivan" had a volunteer named Slobodanka, aka Boka, who came to visit him nearly every day. She LOVED that boy. She really wanted to adopt him but her husband was not in agreement.

Fast forward to spring of 2013, and Dean and I met Boka again, only this time her husband was there! They were on the playground with "Ivan", and he didn't even look like the same child! He had gained a bit of weight, but most importantly, he was no longer crying. He had found love. Boka had given me her contact info but sometime in our travels home I misplaced it.

Tonight, imagine my THRILL to find this article, and pictures of my boy Ilija (his real name) living with Boka and her husband as his foster family. I am overjoyed, to say the least. This child's face has haunted me for years, and now I know he is safe and loved!

You can find the article about Ilija and his new family here.

Thank you God, for answering this prayer!

*note* In the blog post about "Ivan" I talked about a boy I called "Tommy". You'll be happy to know "Tommy" is now called Abel.



Thursday, March 24, 2016

Remember that one time when I had cancer?

Two years ago today I posted this. Its been months since I've read it, because I cannot read it without tears stinging my eyes. I remember that person. The one who was so scared and couldn't breathe for what seemed like days. I remember the way the words, "I expect this to show you have cancer" cut through the air like a razor blade. I remember trembling in a way I didn't know was humanly possibly and being unable to make it stop.
Two years. I'm a different person now. I am a woman who survived cancer and it changes you. Cancer made me stronger in some ways, and weaker in others. It made me more compassionate and willing to step out and be kind to others in a way I that had never occurred to me before. Before cancer. My life is now "before cancer" and "after cancer".  If you haven't had cancer you won't know what I'm talking about, and may accuse me of being a bit dramatic. You don't know. You can't know. I chose to share my story with you anyway. A story which prompted many of you who had been stalling to get your mammograms done. (and two of you being diagnosed with cancer!)

So, here it is. My words from two years ago, from that time I found out I had cancer.
*********************************************************

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.

Wednesday, March 23, 2016

Dear Department of Homeland Security

Dear Department of Homeland Security,

As part of our adoption finalization process it has been required we verify the Certificate of Citizenship for (Amos). Although we had only received this document from you two weeks prior, per your request we returned it to you. You then overnight shipped it back to us.

Today, two months later, you have requested a copy of the back of said document. Enclosed please find a copy of the back side of the Certificate of Citizenship. Please note this is a quality copy, and all items appearing on the original document are visible on the copy.


Tuesday, March 22, 2016

Happy Coming Home Day!

Two years ago today, three exhausted people arrived at the Minneapolis St Paul International Airport: M
e, Axel, and newly adopted Audrey.

A lot has happened in her two years home. She is an amazing part of our family, and we can't believe we ever lived without her.
March 22, 2014

March 22, 2016

Monday, March 21, 2016

World Down Syndrome Day 2016

Monday, 3/21 is World Down Syndrome day 2016, to honor the three copies of the 21st chromosome, which is what makes Down syndrome. 

We have lots of reason to CELEBRATE our children. Down syndrome is just a small part of who they are (but it is absolutely a part of who they are!) But our world isn't all about Ds anymore. Its about living, learning, and joining in society even when the world deemed our kids as worthless and of no benefit to the community which some of them were born. Down syndrome is our normal here, and I forget about it most of the time. The purpose of World Down Syndrome Day is to bring awareness to the fact people with Ds, our children included, are people with worth and are valuable members of society.

Angela: If she just had Down syndrome, life would be so much less complicated. Now that we know the medical secrets hiding in her body, we know that NONE of her health issues have ANYTHING to do with Down syndrome. Just getting rid of the high ammonia level has affected her ability level in drastic ways. Suddenly she can write much better. Her speech has changed for the better - even with her hearing loss! She has impulse control like she has never had before, and her ability to reason has also improved. She's even reading better. She is a completely different person than she was just six months ago. Down syndrome is not her issue, it is everyone else's problem.

Axel: Such an amazing kid. A true caretaker who would make an amazing dad someday. He frequently goes behind the people in the house, putting away things we've left out because we were going to use them again in 2 seconds because we are apparently not capable of cleaning up after ourselves. Axel's speech was profoundly affected by his years in the institution. Years of nobody talking to him, or caring for him on a daily basis, left him unable to make the words he needs. Axel has a lot to say though, he just has a tough time getting it out. It is amazing to me how much Axel has recovered since becoming part of our family. No, Down syndrome is not his issue. It was everyone else's problem which is why he is left without a voice.

Abel: Number two without a voice. Sadly Abel is probably the most institutionally damaged child of all our adopted kids. Home 3 years, he is still very much a feral child. I don't talk about him much here because, to be very frank, sometimes it is hard for me to find positive things to say. He *IS* making huge progress thanks to the amazing staff at his school. Everyone from the office staff, to his teachers and support staff, to the phy. ed. teacher have helped him to make great leaps in his ability to function in the world. But I won't sugar coat things here. Abel will never live independently. He will always need extremely close supervision to keep him and others safe. Down syndrome isn't his issue. It was everyone else's problem which is why he was left to develop such primal survival skills in order to have his most basic needs met. Imagine having to threaten his institution caregivers with physical harm just to get a drink of water or an extra bite of food.

Asher: A third child without a voice, stolen because of one culture's fear of those who are different. A problem solver with an amazing sense of humor. Asher will never talk more than a (modified) word here and there, and yet he is an amazing communicator. There is never a question what he wants or needs, or of what he's interested in. Down syndrome isn't Asher's issue. It was a problem for everyone else and it is the fault of a society that he has no voice.

Audrey: Our fourth child without a voice. Our fourth child who has to learn to function in a world after 8 1/2 years locked away, severely neglected, because she has Down syndrome. A child so smart, so capable, who now appears to others to be severely autistic and ambivalent to the rest of the world. But those who know her well? They can see who she really is inside there. A strong, opinionated young lady who knows what she wants. Down syndrome isn't her issue. It was a problem for everyone else, and is they who hid her away from the world, preventing her from becoming the capable young lady she was meant to be.

Amos: Child number 5 without a voice. who will probably be forever a toddler because the world in which he was born didn't feel he was worthy of life. So smart and cunning with amazing problem solving skills. The child who, because he had no exposure to LIFE, spends much of his time with anxiety so high he laughs maniacally while staring at the ceiling. Down syndrome is not his issue, it was the problem of everyone else who didn't want to be responsible for a child "like that".

Our kids have Down syndrome. No, they cannot do "anything they set their minds to". Two, at least, would like to drive a car but never will. All want to talk but for at least three of them its unlikely to happen. All want to cook for themselves, but for at least two it will never happen. All want to have purpose in life, and for two of them that will likely never happen. But all the limitations facing them are not because of Down syndrome itself, but due to society setting limits upon them at birth, forever changing the course of their lives.


Thursday, March 17, 2016

The countdown




Every day Angela asks me, "How many days until my surgery?" 

We're both anxious, but I think for very different reasons. I have explained to Angela several times that she will still have her gtube when this surgery is done. Unfortunately it doesn't matter that we have the conversation every day, even multiple times per day, she is convinced this will be the end of the tube. She wants her life back, and in her mind her gtube represents when her life changed so drastically.

But Dean and I, we are anxious as parents tend to get. This surgery is completely expiramental. It has never been tried before. There is no way to predict how her liver, or her body, will respond to the changes about to be made. She has a history of wound healing problems, and there is no way to know if this will still be a problem, altbough the doctors suspect it was due to undiagnosed hyperammonemia. And then there are the wounds themselves. They will be huge. Oh my baby girl. I hate this for her. 

And then there are the logistics of the hospital stay. Angela will be in intensive care for several days (a week to 10 days was the guess) then another week or so before coming home. There will be lost income and much juggling of the other kids, but I think we're as prepared as we can be. 

Today we went to the hospital for ultrasound imaging of Angela's legs. Her doctors wanted a good look at her vasculature as they plan to use one of the veins to close the defect in her liver. We were both glad to be one step closer. Two days before surgery we will go back for bloodwork to get her typed and crossed as they anticipate she will need blood during surgery. She was all smiles waiting for her ultrasound.

Thursday, March 10, 2016

Asher 3rd grade program

It was just a little over four years ago (December 2011) that we brought this tiny little boy home. We named him Asher. He was so very tiny when he came home. Seven years old and looking like a mere toddler.



His 8th birthday, his first with us, he wast just starting to understand about birthday celebrations, and he loved it.

We waited a few months before Asher started school, starting kindergarten just before his 9th birthday. The first few months were tough for him, learning to function in a school setting. There was SO MUCH going on in a classroom for him to process, in addition to not understanding English. But then, after much discussion and many meetings, the school district agreed to give my suggestion a try and hire a 1:1 interpreter/assistant to work with him and give him communication as well. That is when Ms. M. entered his world, and she has been nothing but a gift ever since. 

Ms. M. has given Asher a true voice in his school. She has helped him learn to navigate the playground, lunch room, and classrooms. She is teaching him his first sight words and his first friendships, I have  no doubt Asher would not be where he is today without Ms. M.

 Every year Asher has participated in his school music program. Tonight was his 3rd grade program, and I am so very proud of him. He has come so very far. 
There are two people who really want to see this video. I'm sorry he's so far away. (click on it to make it bigger)  He's on the far left, front row in the bright blue plaid shirt. For those who haven't been here to see him every day, I wish I could describe to you how much change is represented in this video. From that tiny baby of a boy who came home 4 years ago to now. 


Thursday, March 03, 2016

Meeting of the Minds: Abernethy Type II Malformation

Today we met with the surgeons at the University of Minnesota to discuss our three options for treatments of Angela's liver malformation, Abernethy Type II Malformation.

As I mentioned in a previous post, we have three options:

1) Medical management: This is what we're currently doing. Everyone on the liver surgical team agrees that medical management is not going well for Angela. The drugs cause side effects that are not just unpleasant, but life-altering. She has lost all independence, is limited to how much time she can spend away from home, and is now embarrassed to have friends over. As for me, I do what I need to do, even if that means donning a hazmat suit for the cleanup that must happen multiple times per day. Ok, I don't *really* need a hazmat suit, but I feel like I do. And, it doesn't matter how careful we are with planning and timing, the moment we're due to walk out the door, or the bus arrives at our driveway, or we arrive at a desination, we have a major problem that requires not just a trip to the restroom, but a full shower for Angela. You can read about the medication and its effects here.

2) Liver transplant: Angela qualifies for a liver transplant, and we could put her on the list now, however she would never get a liver. She isn't sick enough. Her liver cells themselves work fine, they just don't get enough blood to do the work that is needed. There are a lot of people on the list who are far more sick than her, and in end-stage liver failure. And even if we put her on the list, that doesn't solve the problem of #1.

3) Lastly, the surgical fix: This is where we're at. The team has proposed a multi-stage process to attempt to close the defect. It is complicated, it is risky, and it has never been tried before in her particular variant. The good news is, they think she is a really good candidate to give it a try. If it fails, she would then go on the transplant list and be more likely to get an organ because her options would have decreased. Because Angela has a history of wound healing problems they'll be talking to her previous surgeons to come up with a pro-active plan to manage this. However, its very possible those problems were caused by the high ammonia levels we didn't know she had. The biggest risks for Angela are blood clots and stroke. (and it is suspected her previous strokes were caused by this disorder, as there is an old, calcified clot inside her portal vein, and vascular malformations in the liver are often accompanied by vascular malformations in the heart, spleen, and braid.) The surgeon expects 3-4 surgeries to get through the repair process, 10-12 days in the hospital with each phase, and somewhere around two months between each phase She will be on anticoagulants shots for the entire process (the first surgery through to several months after the last) in hopes of preventing her from developing clots.

I am waiting for a surgical scheduler to call me back, but we are looking at scheduling surgery for the beginning of April.

So thats it. That's where we're at with this. Deana and I are scared to death about the potential for problems with this surgery but really, we don't have any other options for Angela to have any quality of life if we don't at least try.



Monday, February 29, 2016

Let me see your tooth

Its very tough to get into Audrey's mouth. She is very good about letting me brush - even demanding requesting her teeth be brushed when I start doing everyone else's. But brushing is as much as she allows where teeth are concerned. She won't allow "inspecting" of teeth, or any kind of close look.

A couple of weeks ago I noticed Audrey and Asher both have a couple of loose teeth. Kids with Down syndrome have a tendency for their teeth to not fall out on their own, partly because many just don't wiggle their teeth like typical kids do. Thankfully Asher will let me wiggle his loose teeth, but Audrey is a big fat NO!

Tonight, while doing her range of motion stretches, I noticed she had one tooth sticking out of her mouth and ready to come out. I was able to pull it before she even knew what was happening because it was barely hanging on. She was fine with it, but like most kids, once she saw the tooth in my hand AND that she was bleeding, she freaked out. Oh she was M.A.D. at me!!!! But Daddy!!!! Daddy can make all things better and she let him clean up the what looked like a crime scene. Then it came time to check the other tooth. Yeah, she's not really going to let that happen. (when I wiped my mouth it wasn't because I was wiping off her kiss, but that her mouth was all bloody. Ewww) Audrey may be non-verbal, but she has no trouble getting her point across.

Thursday, February 18, 2016

Bits and Pieces, gained and lost.

I hate when the information comes in bits and pieces. Just give it to me all at once so we can figure out what to do, make decisions and all that stuff!!

Today Angela had a Hepatic Venogram (also called and IVC/Portal Venogram) The purpose of this procedure was to take a closer look at the portal shunt inside her liver as well as measure the pressure inside the portal vein. We have known its high, but how high? The procedure was done under general anesthesia. They put a catheter through both her neck and groin and ran the catheter into her liver and injected die so they could get another picture of the shunt. The doctor showed me the images and the pretty much mean nothing to me. LOL I can totally understand ultrasounds, but these make no sense to me, except where she injected the dye into the little veins. And they are little! Less than half the size they should be and unable to support even 1/4 of the blood flow they need to be carrying. 

When the portal vein pressure was measured, its is at 14. The radiologist explained to me this puts Angela at significant risk of vessel rupture. So much information. I do better when I have information in print so I came home and looked it up. 

The normal HVPG value is between 1-5 mmHg. Pressure higher than this defines the presence of portal hypertension, regardless of clinical evidence. HPVC > or = 10 mmHg (termed clinically significant portal hypertension) is predictive of the development of complications of cirrhosis, including death. HVPG above 12 mmHg is the threshold pressure for variceal rupture. 


But that's as much as we know. Now we have to wait to talk with Angela's medical team and hear what they have to say about this. What do we do with it? Can they fix it? Is it too big to be fixed? (the radiologist did not sound very positive about this based on the size of the communicating vessels) When we met with the liver specialist last week she listed the options as surgical fix, manage medically (with  the medications and protein restriction she is currently on) or transplant. We really do NOT want to manage this medically. Angela has lost huge areas of independence from her life. The drugs have caused her to have *major* GI problems that are very unpleasant to deal with, both for her and a caregiver, and she cannot manage it alone. She can no longer just go hang out with friends. She can't spend the night at friends' houses. She can't leave her school program campus (which I don't even remember the last time she was actually there) without a nurse with her. She really cannot attend anything or go anywhere, without a caregiver with her. She can no longer swim thanks to last week's increase of the drugs. She went from being able to spend time home alone to never being alone. From being dropped off at a social event to having a caregiver within eyesight at all times. Although she is taking all these changes in stride, we can see her sadness. She sees pictures of friends attending parties that she was not invited to that she normally would have attended. She misses being away from mom and dad and hanging out with her friends. She misses eating food. She misses school. She misses everything she has lost, and we miss it for her too. We don't want to "medically manage" this problem. We want it fixed. We want for her to have her life back. 

Saturday, February 13, 2016

On the beach

This trip wasn't about fancy. It wasn't about 5 star restaurants. I didn't pack any make up. We didn't pack and "nice" clothes, just our every-day stuff. The owner of the house in GA asked if we'd like to have some family photos taken. Wow! We have never done that. Ever. We opted for pictures on the beach.

I panicked. Oh my word! What are we going to wear? I looked at the kids, at the boys who *all* were in desperate need of haircuts, as were Dean and I.  I had nothing but t-shirts along for myself. Oh man, these were going to be the real US! The real deal! No hiding under brand new clothes or make up. Just shaggy heads, frumpy mom, sandy faces.

And I love them.

I love every single one of them. I have very few pictures of myself with any of my kids, and now I have pictures of me with every one of them. And pictures of Dean with every one of them. And pictures of all the boys together, and my girls together. And Dean and I....oh how these pictures of Dean and I together mean the world to me. Here are some of our favorites. You'll see everyone's personalities, from those who don't really care for hugs to those who are a bit more mischievous, the serious, the "Teen who can't smile for the camera", and the one who loves the camera most.

I want to say a special thank you to Tamara Gibson Photography, who so generously gave time to our family. These pictures mean the world to us.