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 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.