Trach Ties

Today I posted over at Trach Ties if you (the only person who still reads this blog) want to check it out. :)

Preparing to Hibernate

We've been busy

I know we have pretty much let our blog die.  I'm sorry.  We've be busy.  After moving for the 4th time in 2 1/2 years I am ready to lay down my roots. Here are a few before and afters of what we have been working on.

before

 during

after

 before (plus a few bricks)

during

after

 before 

during 

after

 before

during

after

and that is just the beginning. :)

Spring Break in Zion

We took a three day trip to Zion's Nation Park for Spring break.  As usual Maaike's changing table made the trip too.  Our adventures started at the historic Cove Fort, pictured below.

It was extra windy that day so we papoosed Maaike and took the tour.

It was a full Krommenhoek/Swenson Family trip, all 13 cousins.  The kids had a ball.

On day two we headed into the park.  We started with the Emerald Pools.

And ended with Weeping Rock.  

Maaike hardly knew what to do with herself.  Since she just came out of winter lock-down she has had to get to know her cousins all over again.  And just like her two older siblings, she can't get enough of them.  The Hotel halls echoed with our children's voices as they ran from room to room.  We swam in the pool, got great Mexican food, and had a blast.  It was the perfect combination of the majesty of nature coupled with the comfort and fun of family.

Our new place

The first time I took my brother to drive by our new house he thought I was joking.  The outside leaves much to the imagination,but that is one of the things that I love about it.

Unassuming on the outside. Amazing on the inside.

 The house was built in 1962, but the seller's gut the upstairs to make the beautiful open layout that it has now.

We won't move in until June, but that will give the yard just enough time to fill in and get the rope swing on the side yard ready.

And the last reason why I fell in love with this house: the view.

If you haven't heard already...

We're on the move again...

...and our house is up for sale again.

http://provohome4sale.blogspot.com/ 

News Interview

 

(to watch the interview of us and another LM/VM family click here 

and then select the 10PM Vascular Anomaly Patients)

To read more of my thoughts and feeling on the subject click over to my trach ties blog.

Sclero, sclahro. Potato, potahto.

* Warning.  Photos in this post are not for the faint of heart*

"You're just going to have to have faith."  Uncommon words coming from a doctor, but that was precisely what our pediatric radiologist said to me.  We are currently taking a pretty aggressive stance against Maaike's cysts in hopes that we are creating a future for her that is filled with words and food.  We decided to move away from the advice of our local doctor and follow the path that the doctors at Children's Hospital in Boston.  Thus far Maaike has undergone two rounds of sclerotherapy, with 10 to 15 more treatments to go.

Sclerotherapy involves injecting large or macro cysts with different agents so that they then collapse on themselves leaving a skin tag of sorts.  Several different injection agents are used, but one of the more common agents, and the one we are using, is chemo.  Because the chemo is injected directly into the cyst and not in her blood stream she will not have the same side effects as a cancer patient, although some sclero patients do experience hair loss in later treatments.

The actual procedure is done under general anesthesia with the injections guided by ultrasound.  First a needle is used to extract fluid from the cyst followed by a second needle that replaces an equal amount of fluid with the chemo drugs.

The big question: Is it working? The Answer: I don't know.

Immediately following the procedure there is no visible difference.  By the next morning swelling sets in as a natural response to the needles themselves.  Next is bruising and hardening of the cysts which can taken weeks or even months to dissipate.  And finally the ultimate collapse of the cyst.  This far we haven't made it to collapse and so we are striving to keep the "faith" as we push on through more therapies.

This photo was taken in the ER on day 3 post her first injections.  She received 8 injections of Bleomycin in her tongue as well as the sclero treatment of 6 surface cysts in her neck.  We had been discharged the night before from the hospital and woke up the next morning to this.  Over night swelling caused her tongue to split on the right side.  We were readmitted to the PICU and then discharged again two days later.

Here is Maaike another week later.  She is such a trooper!  No feeding tubes.  She went to a Pediasure liquid diet for three weeks until the swelling went down and we slowly introduced soft foods.  It took about 6 weeks to get her tongue back to it's normal large size...or maybe slightly smaller.

 In consultation with our radiologist we opted not to treat Maaike's tongue in her second round of sclero.  I wondered if the pain from her neck injections would be more pronounced without all the tongue trauma, but one dose of Tylenol and a good nap later it was as if nothing had ever happened.  We went home that same day.  Now the question is if we will treat her tongue again or not.

So why would we ever put Maaike or ourselves through all this?  The answer: Hope.  Hope that this will provide her with the best chance at the best life that she could possibly have.  Hope for a life full of words and food.  Hope for a life without a trach.  Hope that one day she will join Trevor Cunningham as one of the kids who made it through the battle with many tales to tell.

Guest blogging

Today I am oh so honored to be guest blogging on This Little Miggy Stayed Home speaking about being a special needs mom and life with our dear Miss Maaike. 

Going to Mecca

The last six weeks felt much, much longer.  I packed.  We moved.  Maaike got RSV.  We tried to unpack and get organized.  We passed Maaike's tracheotomy one year anniversary.  We shopped and tried to reinvent our house.  But mostly we waited.

Our last trip to the hospital confirmed my fears that Maaike's next surgery wasn't years away, but was right around the corner. And though we have been pleased with our local doctors and hospital they have never seen someone like Miss Mike before.  Through emails, research, and phone calls across the ocean we were directed over and over again to one particular doctor in Boston.  As soon as we got the go head, and in less than 24 hours, we collected every scrap of paper, slide, x-ray, and scan of Maaike and sent it off to Boston.

We were told the review would take about two weeks.  At the end of two weeks we could expect a phone call that would tell us if they would take Maaike's case or refer us back to our local doctors.  As usual the two weeks came and went.  We waited and waited some more.

Then finally, last week, they called.  We're in!  When your child has a rare condition you want the best, the very best.  Worshiping in your local shrine is great for everyday needs, but when you are seeking a miracle it is time to pack up and pilgrimage to Mecca.  For now our Mecca is Boston.  Boston here we come.

We will probably be making a couple of trips to Boston this year.  This first trip will be to meet with all the specialists and run some tests.  We are hoping they will take care of her stoma surgery on this trip (to enlarge the hole in her neck for a bigger trach), but her tongue reduction and other treatments will most likely have to wait until the doctors can all confer.

It seems unbelievable that we have a child who's health would necessitate a move around the world and then flights to the other side of the country to get her the proper care she needs.  China is just a distant memory and our day to day life revolves almost completely around Maaike's care, but we are happy.  We are happy to be together, to be back in our house, to be surrounded by people who no only love us, but who drop in, at all hours of the day, without being asked to help.  So while Boston may be our medical Mecca, the location for the Mecca of our lives is right where we are.

One year ago today the world changed. Happy Birthday Maaike

My dearest Maaike,

You were such a big baby! 8 pounds 14.5 ounces. Too big, in my opinion, for an all natural delivery, but it was too late. Right after your arrival they plopped you on my tummy and I was able to told you for just one moment, but in that moment our bond was solidified and you became mine. I tried to listen to what the doctor was saying, something about lasers and "it's only cosmetic", but I was being distracted by stitches and imagined you had webbed fingers. Then they brought you to me, your purple lip perfectly pursed. We had no idea what lay ahead of us and, thankfully so, as we had one day together blissfully unaware that anything was wrong. It wasn't until the next day after your bath that my lotion filled hands would caress a magnitude of tiny bumps hiding in the sweet fleshes of your neck. You can thank me later for not allowing them to send you to another hospital with a wet-nurse for an MRI. Instead we held you close and made dozens of long distance phone calls. Everyone rallied to get you quickly home, your doctors, the embassy, our families, and even Li Ayi. You set us on a whole new course, a new continent, a new consciousness. Our lives are so much better for it. Thank you dear Maaike for coming to us. These next few years may be though at times. You will have more surgeries and challenges to climb, but today on your birthday let us be as blissfully unaware as the day you arrived and only enjoy each other and the knowledge you are mine. Happy birthday.

Love,
Mom

This old house

In 6 days we bid farewell to the farm house and close another major chapter in our lives.

Thanks for being there for us when we needed you.

Don't worry, we'll be back to visit often and bask in the shade of the incredible maple tree.

  

Our Puj Video

I'd love to know what you think.

Boomerang House

The time is steadily approaching that we will move back into our house.  If you remember, we sold everything before we moved.  Lesson learned = get a storage unit.  When we first moved into the farm house and life with Maaike was pure survival I would find myself fantasizing about all the stuff we sold.  It wasn't that the stuff we had before was that awesome, granted there were a few things that we loved, but most of it was either stuff we liked or stuff that we pulled from a dumpster in Michigan.  Most days I would just remind myself that "stuff is stuff and that's it."  But on other days I was mourning it, but not because I wanted the stuff back, but the life I had with it.  Those first 4 months after Maaike surgery I could hardly breath let alone imagine how they would ever get better.  But they have.  Life with Maaike right now is pure bliss.  She is doing so great.  We had no idea where she would be cognitively, because we had no idea for the first 3 weeks of her life we she was desaturating more than a 100 times per hour!  Now each and every milestone reached is cause for celebration.  And cognitively she is right on target.  It feels like we are stepping out of the dark woods into a bright and sunny day and in the distance we see our house and it is coming closer and closer.

Now a days I don't think about our old stuff.  It seems funny to me know that when we walk through our old neighborhood we will be greeted by a lot of the things our friends bought from us, but no worries by dear friends, we do not want it back.  The fact is we are so lucky.  Amazing blessed to have Miss Maaike, but just plain lucky to have this unique opportunity to start a new.  Our family has grown and changed so much in the last year and we can redefine our space to what ever we want or need.  Old furniture! You can't hold us back! Who has a great excuse to go on a wildly huge decor shopping spree?  I do! I do!

Being home bound for the last 7 months has taught me a lot about stuff.  1. Stuff is stuff, it is just stuff, and I can let go of it.  2. but on the other hand, stuff can represent a lot of stuff  3. when you love your stuff it makes you feel happy to be home.  The new challenge is to find stuff we LOVE.  Stuff that is worth renting a storage unit for when you move to China.  Stuff that "rises up to greet you" (thank you Nate).  I had no idea how hard that would be, but we are definitely up for the challenge and it will be nothing like our house was before.  Curious?  I'd like to introduce our very first piece of furniture for the boomerang house:

Orange side table meet my friends

Baby Diva

She is sunshine in my soul

Over the last 6 months, as Maaike has been home bound, my husband Sid and I have traded off Sundays for church.  Its not ideal, but it has its perks too.  The unwritten rule has become that whom ever is staying home with Maaike that week is in charge of making dinner.  Before this ritual began Sid had three dinners in his repertoire:  fried rice, tri-tip steaks, and grilled chicken, each dish being seasoned to perfection.  But it is now not uncommon to find Sid on a Sunday morning perusing the internet for his next master recipe.  But this last Sunday that was not the case.

Sid's oldest sister is an ER nurse and last weekend she and her family moved into a house about 5 minutes away.  She so kindly offered to watch Maaike for us so that we could go to church together.  It was such a special treat.  We got several stares from those who know we can't attend together and I'm sure they were wondering where Miss Miaake was.  We used to sit on either end of the pew so as to corral the kids, but this time the kids were pushed to the side so that we could sit together.  It was sweet...but still a little bitter...we were still not complete.

The service was nice, but the tears came during the closing hymn.  When Sid saw what the selection was he nudged me and whispered, "Of course, it had to be this song."  I had no idea what he was talking about.  He then pointed to the lines of the second verse, "And Jesus listening can hear the songs I cannot sing."  (LDS Hymn 227).  Then the tears began to freely flow.

I didn't know that Maaike would lose her voice with the trach.  Tracheostomies are placed in the trachea below the voice box preventing airflow to cross over the vocal cords.  Another trach mom had clued me into this before Maaike's tracheotomy and so I asked our ENT about it.  He assured me that Maaike would have a one way valve that would all her to vocalize on the exhale, like Christopher Reeves.  Having never been through this before I assumed that it was a different kind of trach and Maaike would therefore keep her voice.  I wont get into it now, but I was wrong to assume.  When I first saw Maaike post surgery and she was back arched screaming without any sound coming out I became frantic that either something went wrong in the surgery or they placed the wrong kind of trach.  The fact is that the one way valve that allows vocalization is on a small "button" (called a Passy-Muir valve) that is place on the end of the trach and we wouldn't even see one for many months and are still only able to use it for minutes of the day.

Life with a speech-less child equals constant watching.  I watch her on a video monitor as she sleeps because I can't hear her cry when she wakes up.  She is never left alone because if I can't see her face I don't know what is going on.  There have been times when she was crying in my arms, but until I looked down at her I had no idea.  As time has gone on I have gotten better at noticing the changing sounds of her breathing.  She sleeps at the foot of my bed and before she is even fully awake I'm up because the pace of her breathing wakes me up.  I still can't tell the difference between crying and laughing without looking at her, they make the same static shushing sound, but as she has gotten stronger she has been able to force air past her trach and make little squeaks.  We have started signing with her and plan to give her language and communication in what ever way we can.

But regardless of notes sung for ears that can hear, I am thankful today to believe in a God who listens with His love to the sweet songs of a very little girl who audibly cannot sing.