Sewing for special needs & spot lights

Before I could take Maaike home from the hospital I had to take a five day training course and then proficiently preform all of Maaike's care for 24 hours without nurses assistance. Each class was 4 hours long, 2 hours in the classroom and 2 hours at Maaike's bedside putting my new knowledge into practice. Day one was practically dedicated to the lifestyle changes we would need to make. I was questioned as follows:

"Does anyone in the house smoke?"

"No."

"Do you have any pets?"

"No."

"Are you a stay at home mom?"

"Yes."

"Do you have any family support in the area?"

"Yes."

"Well, you were meant to be a trach mom."

I wasn't so sure about that, but I was willing to humor her. On day four it was brought to my attend that some adjustments would need to be made in her wardrobe. It is suggested that trach kids wear V-neck tops to allow for airflow around the trach and decrease the likelihood of trach occlusion. Well, it just so happens I sew. On day five I was trained to give CPR with a trach and how to rescue breath via ambu bag. Though practicing on my own child was horrifying I found that my glory days as a lifeguard came back to aid me. At this point I was starting to believe I was meant for this.
I scour the local consignment shops for V-neck baby attire. Sometimes I hit big and sometimes I walkout empty handed, but that's okay, because I sew. When Katie contacted me about sharing our story on film I had no idea what I would wear, but there was no question that Maaike would be wearing something I made. One of my favorite patterns for Miss Maaike is this kimono pattern by Amy at Habitual. It's easy, it's quick, and it's oh so cute. I like to make it out of a knit material because it's softer and instead of having the inside tie together with a bow, like the outside, I like to use a simple snap to reduce the bulk a little. It's the perfect pattern for a last minute baby shower gift or a trach baby just home from the hospital gift. The first one I made took about an hour, but now I can whip one out in about 20 minutes. They are great for pairing with bright leggings, like Maaike's from Target.Miss Maaike is 10 months old today! I can't believe how fast she is growing! 10 months down and 2 to go until we party hardy!

A great day

I'm in love with this face. I just gush every time I see her. Today was a great day. Nothing amazing happened, but we were all happy and healthy.
One of Maaike's therapists came today and she oohed and awed over how well Maaike was doing and how far she has come. Next month Maaike has her 6 months therapy evaluation and I can't believe it, but I am actually looked forward to it. It will be a great reminder of all we've accomplished and worked for.

Our first weekend away with Maaike and her changing table

As we were driving home yesterday from our little getaway I caught myself thinking that life in that moment was perfect. The logistics of taking Maaike and all her gear on a trip seemed stressful, almost insurmountable, and just plain crazy, but with hopes of taking a family trip this Summer it was time to give it a test run close to home. We stayed at a hotel with a little indoor water park just 40 minutes from home. We figured if it got too crazy we could just turn around and go home, but thankfully that didn't happen. Instead we conquered fears, made memories, and proved to ourselves that with a changing table all things are possible. Maaike has never taken a real bath, let alone, gone swimming, but we felt it was important for her to be in on the action too, even if only ankle deep. A trach is an open port directly to her lungs, so you can imagine how Maaike and water don't mix. I have great anxieties having Maaike near water, but it was high time she got to experience a little water splashing.

Sid and I took turns playing with the water rats and tending to the land-locked little lady. It worked out rather nicely and I think we all had a wonderful time.

After swimming it was time for a movie in bed

We discovered a few tricks that will come in handy on our next adventure. First, the princess canopy. Maaike was able to have a dark corner under the hotel curtains while the rest of us took in a little March Madness.

Second, hotel furniture can be moved. We cleared out a lamp, table, chair, and ottoman to build castle de Maaike in this corner.

And third, never under estimate the power of a changing table. Back in July we put wheels on her changing table so that it could be wheeled throughout the house when she had to be attached 20 hours of the day. Now she is only hooked up when she is sleeping, but the wheels came in handy once again. It was so nice not to worry about disconnecting everything, finding a place for them to sit, and then reconnecting everything. It was a simple unplug, plop it in the back, wheel it into the elevator, and plug it back in. We are hoping to find a smaller cart for our summer trip as the changing table takes up almost the entire back of the van, but lessons learned and mission accomplished.

...and so the China dream lives on

I have been cruising the "Moms of special needs kids" blog scene over the past few weeks. Sometimes I get that "you know just how I feel" euphoria, but most often I end up in tears. I am so proud to be Maaike's mom, so proud of her, so proud of how far we have all come, but still longing for her to have a "normal life."

At dinner every night we have a little tradition of sharing our best and worst of the day (stole that from the wonderful Darringtons). It has been a wonderful way to get into my kids heads and learn about how they view the world. Coy is usually the ring master of the event and starts by describing a family member. Then we guess who she is describing and that person shares their best and worst. Maaike gets to participate too. Sid or I will be her spokes person and picking out her best and worst events of the day are usually pretty easy. Worst= throwing up, a common event. Best= wrestling with her Dad and siblings. Worst= crying through physical therapy. Best= bath and massage time. Being home bound for 6 months of the year it has been simple daily traditions at home that have kept us going.

I love sharing our best and worst of the day. I love when my kids say their best part of the day is "right now!" (i.e. having dinner together as a family). But I have a tinge of pain in my heart when it is Maaike's turn and she is described for the guessing. "This person has a trach...has a purple lip...breathes through her neck...has a huge tongue..." All these things are true and there is absolutely no maliciousness in Coy or Kees' descriptions, but I am trying to mentally brace myself for the things cruel and ignorant kids (and adults) sometimes say.

When parent of kids with special needs say, "I wouldn't have it any other way" I don't get it. Maybe I will feel that way in many years as I look back on how things have worked out, but I would have it another way. I would have Maaike not have to go through trach changes, surgery, and the stares of strangers. I would make it so our family could go to church together year round and not have to divide up for every activity. I don't want Maaike to have a nurse follow her every second of the day when she goes off to kindergarten... but the fact is that if this is what it will take to have her with us then we will roll up our sleeves and gladly do it, but I do wish she could have an easier way.

Maaike is napping right now, hooked up to 4 different machines, and blissfully unaware that the rest of us don't snuggle with tubes and wires as we snooze, but that wont last for too much longer. Soon she will start to realize that there are extra steps in her day and challenges the rest of us don't have to tackle. Oh baby girl, may we raise up to have patience with your differences and the confidence to share your beauty.

One of the last questions I was asked during the Puj-filming was in effect "Why the dream of moving to China and how has that changed?" In that moment an answer I had never before considered came. Personal revelation if you will. Part of moving to China was to open our children's horizons, let them see and experience first hand how other people live. So many of the other parts of the China dream have now fallen to the wayside, but through Maaike our children will still see and experience first hand how some other people have to live. They will know that differences are not bad, but endearing. They will see that we can all look different and still be beautiful. And hopefully they will feel empowered to accept the good in others and help lighten the burdens that are heavy...and so the China dream lives on.

(this is the one and only photo of the five of us taken in China)

Taking a bath

Over the Christmas break I fell into a giveaway addiction. I was determined to win a piece of furniture so we would have something to move into our home. Well, I didn't win any furniture, but I did win a Puj Tub! If you haven't heard of them before I can honestly tell you they are awesome! I randomly clicked on a link for a giveaway that brought me to, the inventor and founder, Katie's blog. Winning the Puj Tub wasn't just a nice win for us it was a revelation...a miracle.

If I am starting to sound over dramatic you must realize that I have a daughter with a plastic tube sticking out of her neck that provides direct access to her lungs. The thought of her slipping or rolling over in a bathtub is terrifying, so we stuck to simple sponge baths at the sink. Enter Puj.

Puj has been all over the place lately, like Ellen and Rachel Ray for starters. It's amazing to me I had never heard of it before...until I won one. I was so pleased with the product I emailed the above photo to Katie with a little thank you note. Then, about a month ago Katie contacted me, asking me if we would be interested in participating in a short documentary about us. I agreed and 3 weeks ago we had a living room filled with lights and cords and a camera. It took about 4 hours start to finish and that will be boiled down to about 5 minutes. It is currently under production and should be ready in a week or two. Crazy huh.

I don't really know what will become of it, but I hope it can serve as a spring board to connect and uplift mothers. I think the Puj could benefit so many other special needs babies that struggle with bath time. I'll let you know when the film is done. And soon I will post Maaike's outfit I made for the shoot, after all, I sew.

One year ago today

Its a bitter sweet anniversary, one year since we left everything we knew behind and embarked on an adventure of a lifetime. We have so many cherished memories from our time in China. We made life long friends, experienced the treasures of civilizations long gone, lived the big city life, and at least partially fulfilled a life list dream. Here are some of the best and worst of our Beijing days:

Worst: the flight to China on March 4th, 2010 Kees threw up all over himself at airport check-in and again and again as we flew through the air, checked in at our hotel, and moved into our apartment. In the photo below Sid and Kees are watching a movie between visits with the barf-bag. Notice the keyboard is covered with plastic-just in case.

Best: Watching our kids love and explore a new culture.

Coy loved to try to eat with chopsticks,

while Kees liked to use them for poking and stabbing.

At first it seemed impossible to find things they would eat,

but it didn't take long before they found their new favorites.

Worst: Commuting with 22 million people

This photo is Coy and Kees in the stroller on the subway

on our way home from the zoo. We purposely keep them

in the stroller so people would not squish them. Sid would read

books on his way to work by holding his book up at face level

with someone jammed under each armpit.

Best: Li Ayi our maid

This is a picture Coy drew of Li Ayi, her, me, and Kees (in that order). It really was as awesome as you would think. Everything in my closet was washed, ironed, and ready to wear. Kees' relationship will Li Ayi would go down hill as she became his non English speaking nanny while I was away in the US, but just yesterday he told me that he missed her.

Best: Hunting for Western products at the markets

Shopping at the markets, even food markets, was really fun. First there was the competitive element of trying to get the absolute lowest price. Then there was the feeling of being on a treasure hunt, never knowing what you would find. And it certainly was always nice to find a little piece of home, like syrup for pancakes.

Worst: Buying meat that was hanging outside

We never got sick and this is a common occurrence the world over, but we Americans like our meat in styrofoam packaged saran wrap.

Best: the fruit!

This little market was just outside our apartment complex. We would stop there on the way home from picking Coy up at school.

The mangoes, oh the mangoes! Juicy, sweet, divine.

Worst: Taking Coy to school

This is one of my favorite photos. We had to fight traffic and cross a major freeway to walk Coy to school each day. I usually walked the kids alone with the stroller, but on this day Sid made the journey with us. This was a worst because on most days Coy would cry as we left her at school. We felt terrible, but knew it would only be a few months before she would start picking up the language and make some friends. Unfortunately we didn't stay long enough to get to that point. Sorry Coy.

Best: Taking our kids on epic outings

We tried to have a family outing once a week. In the short time we were there we managed to make it to all the major sights and then some. Sid and I got to premier a documentary on China last week that Sid had a small part in. As the film flashed through Beijing it was an awesome feeling to know that not only have Sid and I been there, but we went to those locations as a family.

Worst: Never getting to say good bye

We loved our time in China. It's hard to pinpoint why. Maybe it,s because it was a dream come true for Sid and me. Maybe it,s because life seemed so free and easy when compared to the trials that came after. Or maybe it,s because we grew so much together as a family. If I had any idea I wasn't going to get to make my round trip flight back to Beijing I would have done a few things differently... like some major shopping, not put Coy in school and bring the kids back with me.

One year ago today we tearfully said good bye to family and friends in the States and set out to change our lives and live our dream. Today I finally feel ready to tearfully say goodbye to China. Maybe we will go back again someday, but if not, we had a great ride. And for now we will continue to write new dreams as a family of five.

New dog with old man tricks

Maaike has started to pull her tongue in more and more. We are hoping that is because it is decreasing in size. It seems to be, but it's so hard to tell. About a month ago we had a little scare when one morning we awoke to find her over sized tongue had swelled up even bigger. It was so big that she couldn't pull it into her mouth at all and it was dry and cracking. We followed her around with little wet medical sponges to try and keep it moist until we go her up to Primary Children's hospital. Many terrible things came to the table with the discussion on possible treatments, including removing the front portion of her tongue, but it was found that she also had an ear infection and there may be a connection between the two. Some of Maaike's cysts are lymphatic and could therefore become inflamed in response to an infection like a lymph node. After the appointment we picked up the prescription and said a prayer...and it worked! In just a couple of days her tongue was back down to it's usual size and now seems to be even smaller. It is such a joy and relief to see her pull her tongue into her mouth. We love it, even if she looks like she forgot her dentures.

Things I never thought I'd sew

I have so much to catch you up on. I have actually been sewing! Crazy I know. While my husband was back in China Kelli flew out to keep me company! It was awesome...minus Kelli throwing up on arrival and then getting the flu, but we both made three skirts while she was here. I shall post on them later when I have the time to go through the photos.

Today's post however is on yesterday's sewing project...arm restraints. Yes. I can't believe it either. Never in my wildest dreams did I think I would be sewing custom arm restraints for my daughter. But here we are.

Every day I have to change out her trach ties (aka the straps that go around her neck to hold the tracheostomy in). I usually swaddle Maaike in a receiving blanket to get the job done, but she has now figured out how to wriggle her arms out. Last week as I was cleaning the wound area she got one of her arms out, reached up, and decannulated herself (aka pulled the tracheostomy out of her throat!)! I stayed calm and cool in the moment, but after I got it back in her neck I let myself have a freak out. As trach kids get older it becomes more common, often as an attention ploy, but 7 months is a little young for that. So, for now, arm restraints it is. But, at least I made it pretty!

love this baby

destined for a corner office

Maaike's physical therapist Betsy, which is not her real name- only the name she goes by, made this custom chair to help Maaike work on her self-sitting. We lovingly call it "the cubical". This is where Maaike sits to eat as she is still too small for her highchair (we had to add a phone book to prop up our little miss in the cubical too). Looks to me like the cubical is in line for a little decorating.
We have started solid foods for Maaike with some veggies. Looking at her tongue you would probably think, "Well there is just no room for anything else in there." And you would be right. In fact, we have to use the handle end of the spoon to feed her because the actual spoon is too large to fit in her mouth. But, every now and again we manage to get a few ounces of pureed peas down the hatch.

None the less the cubical has done its job as Miss Maaike has found her tiny sit bones.

I am thankful for traches

For much of the past 5 months I have felt like Maaike's trach was my enemy. Such a small thing has changed our lives so drastically. The plan was always that Maakie and I would fly back to China to Sid and the kids until the trach came into play. It was our pediatrician in China that told us not to bring her back. "They (doctors in China) have maybe seen one or two traches in little kids before, if ever. Its just too risky. If anything went wrong..." And so we sold and packed up everything we owned... again. There are days when I look at sweet Maaike and pray that we made the right decision. Sometimes I still can't believe that we let them do this to our little girl, something so barbaric. But then I think back on the day when I went to the hospital to consult on Maaike's sleep study results. "Only 10% of her air way is usable...she is working so hard to breath you'll be looking at heart failure...its really the only option we have left..." That was a bad day.
But now, almost five months out from her surgery, I can see her, just Maaike, no trach, when I look at her. I am enjoying this baby stage like I never did before. Maybe its because we are forced to be home so I have to/get to take the time to enjoy her. Maybe its because the possibility of losing her seemed much more real with her. Maybe its because her beautiful fuchsia lip makes her smile pop out that much more. Or maybe its a gift for moms with babies who have special needs. No matter. I am loving being a mom more than ever and if its a trach we need to have Maaike here with us then a trach we will have. I am so thankful for traches.

6 month stats:

13.9 lbs (16th percentile! up from the 6th)

27.2 inches (95th percentile! up from 93rd)

Star of the Week

As part of Coy's kindergarten class each child gets to take a turn being the "Star of the Week." The parents get to make a poster all about their child and then come in at the end of class to brag about how wonderful their kid is and what kind of stuff they like and then share their child's favorite treat with everyone.

We took a few moments this morning to talk about what Coy would like on her poster and what her current favorites are. I knew most the of the responses: favorite food = my homemade chicken pot pie, favorite book= "What! Cried Grannie", favorite candy = gummies. But there were a few surprises too, like her favorite color is now light grey. Okay. Top of my list too.

Bragging on Coy is easy these days. She still has her freak out moments for sure, but she has caught me by surprise in the best ways lately. Most notably, the day I didn't wake up.

Getting enough sleep is a daily challenge. Between middle of the night feedings, to changing the pulse-ox probe every four hours, to the oxygen saturation alarm sounding, I average about 6 hours of sleep a night. I do pretty good most days, but one afternoon it all caught up to me.

After dropping Coy off at school and putting Maaike down for a nap I wanted to give Kees a little one on one time. We curled up in a chair with a few books to read and set an alarm on my phone to remind me when to leave to pick up Coy. I can't remember how many books we read or if I even finished one before I fell asleep. Kees stayed right there in the chair with me and looked at the pictures while I snoozed sitting upright.

I don't know what finally woke me, but as my eyes went to the bird clock I went into simultaneous shock and panic. It was 4:15pm! I was suppose to pick up Coy from school at 3:30, 45 minutes ago! I ran first to check on Maaike, fearing I had slept through her oxygen alarm, but thankfully she was still sound asleep and breathing well. I then grabbed my phone. not only had I slept through the alarm I set, but also through a call from the school asking me to come pick Coy up, and a call from my husband after the school had called him. We only have one car so he was powerless to help.

I tried first to call the school, but the line went automatically to the after hours voice mail. Then I called my mother-in-law. No answer. My sister-in-law. No answer. My brother-in-law. No answer. Sid. Answered and he had gotten a hold of my father-in-law. Knock on the door. Royce, my father-in-law, he would leave to get her straightaway. I was still in a groggy daze of shock, but went in to unhook Maaike from all her machines who was now stirring. Kees, Maaike, and I went out on the front lawn to wait.

I imagined the reaction she would have getting out of the carin tears, "Mom! I was the last one! Why did you forget me!?! Why didn't you come get me?" I felt terrible as it was. Over whelmed with Maaike's care I however determined to make sure that Coy and Kees still felt as loved and cared for as ever. I hated to think of a little kindergartener waiting alone in the office for 45 minutes. Just a few weeks before Coy had offered up this prayer at dinner, "...and please bless that Mom and Dad will care for me and Kees as much as they do Maaike." A piercing arrow straight to the heart.

When Royce's car pulled up my heart was racing and I started crying. Before she could say anything I started to tell her how sorry I was. But she was not crying. In fact, Coy looked just fine. She only stopped for a moment to say, "It's okay mom" and gave me a quick hug before she ran off to play.

I stood there crying for a minute, letting myself purge it out, but then took a seat with Maaike as we watched Coy and Kees play on their bikes. It was a beautiful moment, the sun was shining through the giant maple tree, there was a slight crispness to the early autumn air, and I was in awe of my five year old's resilience.

She's a Saint

Maaike just couldn't be anything else this year. How many things in this world come with a barrel under their chin? I colored one of her nose-piece barrels to match the Saint Bernard's. The only problem is what to do next year?

Cousins on parade.
Coy wanted a cat pumkin, I carved a trach for Maaike's (really the scariest of all), Sid went for the the Nightmare before Christmas, I finally ended up with a haunted tree, and Kees wanted a bat.
Next week Maaike goes back up to Primary for the trach clinic and more evaluations. It's always nerve racking wondering what they will or wont find, but it is comforting to know that regardless of or visit next week or next month Thanksgiving will come and sooth me to sleep with tryptophan.