Feeling the love

In response to our Puj video I got this email:
"Dear Rian - I stumbled across your Puj video from a recommendation about Puj's products. We have two little girls, our eldest will be three in October and our youngest is just about to turn 16 months. Your family is so beautiful and your eagerness to expose your children to the new and unfamiliar is just wonderful! I will be thinking of you, your work and love for your children, and of course your youngest girl for a long time to come. At the risk of coming across wrong, but wanting to avoid (to me) the greater risk of not engaging, I had to ask you ... what can we do to help?
Yours,
Louise"

I happened to get this email after a long day of battling our insurance.  I cried reading it.  I racked my brain for an answer.  What could someone I don't know, who doesn't live near me, do for us?  Here is a clip from my response:
" I have thought and thought and wondered and contemplated.  In the end it seems to me that the biggest help is what you have already done: reaching out.  I have truly felt so loved and cared for by your message.  To have someone step through the fear of being misunderstood and extend their friendship is so powerful.  Thank you."

With time and the help of a few web sites (http://www.liamsland.org/lm-faq/ and http://www.kotm.org/) I have compiled a list of a few more.

•  Donate money.  Find an organization that funds research for a child's particular condition, organizations they are involved in, or what hospital they attend and make a donation on behalf of the child or person you wish to help.
•  Donate your time.  Help with a fundraising event for even do one on your own.  Collect inspirational quotes and send a thoughtful email of encouragement.  
• Donate your faith.  A friend recently shared this piece of wisdom with me, "When someone is in the depths of sorrow or stress they cannot be expected to pray.  Their plate is too full.  We then must be there to pray on their behalf."  
• Donate someone else.  Do you know a boy scout who is looking for an eagle-scout project? A business who needs some tax write offs?  A youth group in need of service?  Get them involved.
• Donate your talents.  Do you sew? Help modify clothing to a child's special needs or make them a Snug Hug if needed. Do you like to cook?  Make them dinner or prepare snacks for their next hospital visit.  Like to read? Do some online research about the child's condition.  Loan a book for the parents to read during then next procedure or audio tapes for a long hospital ride.
• Donate your thoughts.  We have been the grateful recipients of a few care packages.  One was full of family games to help get us through the long house-bound winter.  One arrived just yesterday.  It had puzzles, Valentine candies, and other fun presents.  In the end it wasn't even what was inside the package that meant so much, it was knowing that someone was thinking about us.  Or, like the woman this post started with, send an email.  It doesn't cost anything, but it can make a huge difference.

In the end I don't think it matters what you do, just that you do.  Thank you Lousie and the rest of your kind.  My life is bettered because of you.

Keeping Germs at Bay

This is posted on our front door.

It's our nice way to tell our friends and neighbors to stay away.   :)

It is hard and even impossible to keep germs from entering your house.  I have received advice from every extreme. From: "You are being way over protective.  She needs antibodies. Take her out. Let her get sick." to "You need to have everyone shower right when they get home to wash all the germs out of their hair and then change their clothes."  Honestly, the right choice is going to be different for everyone.  So far what we are doing is working for Maaike, but that may change.  Maaike is doing awesome right now and it is easy to start letting things slip a little, but the facts are that a tracheostomy opens a straight passage to the lungs and things can go from bad to critical very quickly.  Here is what we do to try and keep germs at bay:

• from October to May Maaike is house bound, she takes rides in the car, but only gets out for therapy and doctor's appointments
• the sign on the front door (above) 
• we wash hands and change our shirts when we get home from work, school, or church
• bottles of hand sanitizer at the front and kitchen door 
• we go directly into a room at the doctor's office, no hanging out  in the waiting room
• Synagis shots every 4 weeks during the cold and flu season (the RSV vaccine. It is very expensive and took several appeal letters for our insurance to accept it, but they finally gave in. :)
• I nursed Maaike until she was 14 and a half months to boost her antibodies
• keep our fingers crossed, hope, and pray

Despite all this Maaike did come down with RSV last June.  Thankfully, I'm guessing mostly in part to Synagis, it was a fairly mild case and she was not hospitalized.  It was however a very long and isolating winter.  This year I feel much more prepared to weather the storm.  This year we have 50 hours of nursing help per month so that I can go shopping, help at our daughter's school, meet my husband for lunch, or just go for a walk.  I can't say enough to the importance of a the care taker getting away for a little R & R.  Every parent needs that.  It can be really stressful to leave your child with someone, but be diligent to find that right person so that you can browse the produce aisle in total confidence.  My husband did phone interviews with 15 nurses.  I then did face to face interviews with his top 5.  I didn't leave the house the first little while that our nurse worked for us to make sure that we both felt confident.  And now I am hoping that she will be available when I need a nurse one day.

Other tactics for staying sane over the cold and flu season? I overdosed on craft items at Joann's.  My husband and I are getting better at stay-at-home dates. I made my husband buy me a treadmill and I actually use it.  I eat too much ice cream, hence the need for the treadmill.  And lastly, I reach out to my circle of trach moms.  They know.  They understand.  They've been there or are there and survived.  Some days hearing that makes all the difference.  How about you?

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. 

To the woman in seat 8C and all "other kids"

On our flight to Boston we were seated next to a business woman.  She was nice enough to let us move from the aisle to the window, but it came up very early in conversation that she didn't have kids.  I took that as the "so please keep your baby in check, I'm not up for it" kind of a statement.  She and Sid talked business while Maaike and I snacked and snoozed.  After a while she started to soften.  She wanted to know about Maaike. What was her story?  Why were we taking her to Boston?  She even shared two of her in-flight purchased sliders with Sid.  She was pleasant, but distant.

Then, without turbulence or warning, she started sobbing.  With only an hour left on our flight she decided to make her move and become unglued.  Through her tears she shared about her younger sister, born with down syndrome.  Her sister died just 5 years ago.  She loved her sister.  She learned so much from her.  But, "don't get me wrong," it was hard.  It was hard to have a sister who needed her parents so much more.  It was hard to not some how feel less loved when you require so much less time.  It was just hard.

Next came her plea.  "Be careful.  Don't forget your other kids."

She was able to regain composure in the telling of the horse her parents bought her.  She knew they loved her.  She still rides horses competitively all thanks to her parents.

"But still it was hard.  Don't forget your other kids."

I will never forget Coy's prayer just after they got back from China.  "...and please bless that Mom and Dad will care for us as much as they do for Maaike."  Indeed, finding the right balance between Maaike's tender health and Coy & Kees' tender feelings is no simple task.  We have tried, but there are days that feel like Sophie's Choice.  Last week we missed Kees' only soccer game because Maaike was in surgery.  Tonight I left Maaike crying hysterically with the nurse so that I could go to Coy's basketball game.  The choices are never easy, but I am learning to and trying to let go of the guilt, because I am doing my very best.

To the woman in seat 8C and all the "other kids": I hope you know you are not loved any less.  You are not less valued because you need less time.  You are not less important because you are healthy. You are loved.  You are valued.  You are so important to us.  I hope you know how special you are.

The things people say

To the lady at Disneyland who put me in tears: My daughter is not a freak.

To the window washer guy who came to our door: She doesn't just "seem" to have pretty eyes.  Maaike has beautiful eyes and that isn't the only thing she's got going for her.

To the mother at Coy's swim lessons: Don't punish your child for being brave enough to ask me about Maaike instead of just staring.  When you punish him you teach him not to reach out, not to connect, and that there is something shameful and wrong with being different.  Being different is beautiful.

To the other kindergarten mother:  Having a healthy baby isn't the only thing that matters.  What matters is that no matter how they come they are ours to love, care for, and cherish.

To say that we were not prepared for people's reactions to Maaike is a gross understatement.  I could not have fathomed the things that a few people have said.   On the drive home from our Disneyland trip we were at our tipping point.  The pointing, the staring, the waving their friends over to gawk, had brought us to our edge so when we stopped into a restaurant to grab a bite to eat and  over heard a woman say to a man, "OMG. Did you see that baby," we were ready to snipe back, "Maaike do you see that crazy lady with red glasses and ugly hair."  Definitely not our best moment, but a needed release and catalyst for our new stratagem.

Years ago I was moved by the story of a neighbor of ours who had two special needs children.  Their oldest daughter was born with Trisomy 18 and miraculously lived til she was almost 16 years old.  Their 4th daughter was then born with down syndrome.  On one occasion she was out with both mentioned daughters as well as their other 3 daughters when someone pulled up behind her vehicle and yelled at her for parking in the handicap parking when she was obvious perfectly ambulatory.  I think she had every right to lose her cool, but instead she walked over and lead the passenger out of their car and over to her van's side door to introduce her daughters.  They apologized.

Learning a lesson in grace from our neighbor's reaction, our new approach is to step forward and introduce our dear Miss Maaike, because the moment you meet her you can't help but fall in love.  I am still in process of summoning the courage and holding back the tears, but it feels right and absolutely imperative for Maaike to know there is no need to shy away from outside world or fear what ignorant people might say.  Being different is beautiful.
  

Waiting and praying

Tomorrow was to be Maaike's first sclerotherapy treatment.  We had hoped to get things started sooner than later so that her subsequent treatments would not linger into RSV season, but a sight temperature and a sometimes howling cough will push us back another 3 weeks.  While I am disappointed I am also relieved.  The thought of her tongue and cheeks swelling exponentially has me on an anxious edge.  It will come eventually, but that day is not tomorrow. 

Tonight was a battle to keep her oxygen levels up.  Thankfully they have yet to drop below the 80's, but even at just one percentage of deviation the alarm goes off.  I sometimes get to feeling that her machines are yelling at me.  We tried all the usual stuff: up her oxygen, suction, wake her, but all in vain of a restful nights sleep for all of us.  Then came the kneeling and the pleading.  "Please help her. Please help us. Make it so the alarm stops."

I read the entire manual of her pulse-ox trying to figure out how to reset the alarms to go off below 88% instead of 90.  That would help a ton and at those levels there is really nothing I can do, but alas the machine is somehow locked.

Then some inspiration.  A deep suction, down below her trach, and then elevate the head of her bed.  And so far it is working.  We have dropped from 5 to 10 alarms a minute to 5 alarms an hour.  I'm still uncertain about our nights sleep, but I am at least feeling we will get something.

I do not think there will ever be words to express to Maaike in her later years of all we went through, all we felt, and all the sleep we didn't get in order to save her, but even so, even now, it is worth it.

The alarm is sounding.  I must go...

To Boston, to Boston to try a new doctor

Our trip to Boston was everything we hoped it would be.  The specialists at Children's Hospital knew all the right questions and had all the right answers, granted some of those answers were not easy to swallow, but we feel confident moving forward with their recommendations, after all, they have actually seen cystic hygroma before.  Amazing.  The next step will be 3 to 4 rounds of sclerotherapy and then a tongue reduction in the spring.  Thankfully one of the colleagues from the Boston Children's office just relocated in July to our hospital, Primary Children's hospital in July, so Maaike will receive her treatments here.  We will most likely fly back to Boston for the tongue reduction, but one step at a time.

Bringing baby home

I had no idea what I was up against when I brought Maaike home.  Thankfully it is doable, but there are definitely some things I wish I had known before.

1. Before you are discharged a nurse and and respritory technician should be scheduled to meet you at home.  They are not coming empty handed.  They will bring at minimum 4 machines and several boxes and about 15 bags of medical supplies.   When you are at the hospital there is a giant supply room where they hind all the stuff you didn't know you where using and many of the machines are built into the walls of the hospital.  So have someone clear out a closet. And take home any bins they offer you at the hospital to organize all that stuff.

2. Take notes. Amazingly you will remember almost everything you have been told about how to care for your child, but for the 10% you don't remember and for teaching other's how to properly care for your child in the future, you are going to want every detail.  On our first night home the RT didn't leave until midnight.  I was exhausted, didn't take notes, and it would take many phone calls to get some simple information.

3. When we were discharged my husband Sid was still back in China with our other two kids so my mother-in-law drove up to follow me home.  I was therefore alone in my car with Maaike in the back seat.  Her pulse-ox alarmed several times and I found myself scrambling for places to pull off on the free-way.  Don't drive home alone.  I could have easily arranged for someone to be in the car with me, but I had no idea how nerve racking it would be.

4.  Don't discharge on a Friday.  It may seem like the best idea, especially if you spouse or family is more available on the weekends to help you get settled into your new life, but the problem is that many services, yes, medical services, are not open on the weekend should you need the help or have a question.

5. Just say "yes".  If someone offers to bring in meals or help watch your other kids or mow you lawn let them do it.  An old neighbor of ours organized friends in a different city to drive up meals to us for 15 days after we got home.  I tried to graciously decline the excessive service, but my dear friend is stubborn and wouldn't have it any other way.  I don't know what I would have done without their generous offering.  We needed every single one of those meals and all the leftovers to make it through that first month.  If no one has offered such help this is the time to speak up and let your stubborn friends know that you are going to need some help and could she/he please take care of it. Just say "yes".


6.  Take time to just be a mom and not your child's nurse.  This amazing advice came to me from another trach mom Somer.  She said, "Remember that Maaike is not as fragile as she may seem.  She is still a baby and will love baby things.  I had a therapist tell me to stop treating Maisy like a patient and start treating her like a baby and it made a huge difference.  I started to remember what my other kids liked at that age and to really play with her instead of just taking care of her."  


7. Take a deep breath and remember this is possible and you can do it!  This can be such an isolating time, but the fact is that you are not the only one who has or will go through this.  After all, I'm here. 

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 "its only cosmetic", but I was being distracted by stitches and imaged 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
                                                                                                       

Have trach, will travel

We just got back from our road trip out to California.  It was relaxing, bonding, and, as my husband put it, empowering.  We only had one small snag at the very beginning, one and a half hours into the trip in fact, when I realized that the one thing I had forgotten to pack was Maaike's oxygen tanks.  It was definitely one of those, "you have got to be kidding me!" moments.  I didn't forget the sunscreen for the beach or gummy snacks for the car, but I did forget a major piece of life saving equipment.  After a relay of calls from the top to the bottom of the state, two oxygen tanks and a trach clip where reserved and loving placed in an unlocked vehicle for our after hours pick up in an up coming town.  Disaster averted.  On to fun and games. 

 Maaike only uses oxygen when she is sleeping so we would hook her up to the rental tank and drive as far as we could while she snoozed.

 We kept the pulse-ox in between the front seats to watch her stats.

 The mirror above her seat is an absolute essential.  That way I can watch her pull off her "nose" (HME) while I'm driving and hopefully see where she throws it to retrieve it when I pull into the emergency lane.

On our first day at Disney Coy said we were, "probably the only people here with a kid with a trach."  I said we probably were, but who knows.  On day two we found out we weren't as a little boy in a stroller passed us with his trach and matching suction bag.

I want to be like Mike!

We had another appointment up at the hospital this week.  It didn't go as we had hoped and now we are finding ourselves having to make some really tough decisions for Maaike's future, but more of that later.  One good outcome of our appointment was a little more research that brought us to two beautiful boys who are just like our Mike.

Liam is just a few months older that Maaike and his parents have started a foundation to pave the way for more research for cystic hygroma.  We have been emailing back and forth with his parents over the last couple of days which has been tremendously therapeutic and informative.  To find out more about Liam and their foundation go to http://www.liamsland.org/

 Kody lives in England and is at least a year older than Maaike.  He has already undergone some of the suggested treatments for cystic hygroma and we are anxious to learn more.  You can learn more about Kody at http://www.mymultiplesclerosis.co.uk/million/kody-barrowman.html

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Sunglasses for a vampire baby

Being homebound for the winter did more than perpetuate Miss Maaike's silky white skin.  I never would have thought to anticipate this, but with such little exposure to the outside world Maaike's eyes turn red and watery at the first glimpse of sunlight.  Thank goodness the fashion powers that be make tiny shades for little babes.  I choose the goggle style because I knew that if the frames narrowed her view she would never keep them on.  And yes, they have 100% UV protection!  Her tiny button nose hardly keeps her glasses up, but she didn't mess with them.  I figure she has enough tough things in her little life to get down about so stepping outside is a great time to see that with a little perspective, and some great sunglasses, everything is coming up rosy!