Friday, February 20, 2015

Eden Needs a New Bike!!

Eden is a bike-riding super star and we were so lucky to have a bike donated to us from another family back when she was 5. She put a lot of miles on that bike, and had so much fun. Unfortunately (fortunately?) she has grown SO MUCH over the past couple of years and has physically outgrown that bike. She has also outgrown it in a mature, pre-adolescent manner as well, and is need of a bigger, cooler, faster, set of wheels. These adaptive bikes are obscenely expensive and well out of our price range. We have entered Eden into the "Great Bike Giveaway" and are really hoping to win a bike for her! Not only is it amazing exercise, it also allows her to participate with her sisters and friends hanging out, riding bikes in the neighborhood.

Please click here and help Eden win a bike!

Wednesday, December 17, 2014

Friday, October 31, 2014

Furbies in Wonderland?

Happy Halloween 2014!

Tuesday, September 02, 2014

Wednesday, April 30, 2014

Marching for Babies...Again!

In just 4 short days our family once again be walking with Team Holland and Eden March for Babies to raise money for the March of Dimes!

It has been over 9 years since our twins arrived way too soon and much too small, yet every day I look at them and still see those babies fighting for their lives in the NICU. I never take their lives for granted, and I am grateful for every day that I get to watch them grow and thrive. They enrich my life, and the lives of everyone who knows and loves them, every day.

We have come so far in the past 9 years. Holland and Eden are in third grade, reading chapter books and learning their multiplication tables. Eden continues to love horseback riding and Holland has earned her orange senior belt in Choi Kwang Do. Both girls are enjoying another year of Girl Scouts and are realllllly looking forward to summer vacation!

Despite all of the progress they are making and all of the joy that they bring, the long-term effects of their prematurity will always be a part of our lives. Eden underwent surgery on a paralyzed vocal cord at the end of March and received her second cochlear implant last Monday. This makes a total of 12 surgeries between the two of them. Eden also completed 2 weeks of intensive PT at EuroPeds in February, and we are planning a 4 week session of conductive education this summer in Grand Rapids. It never gets any easier watching them go through so much.

I am thankful for advances in neonatal care that made our girls' lives possible 9 years ago. I hope that with continued research into causes and prevention of pre-term labor, as well as improved treatment options for those born too soon, fewer babies will face the long-term consequences of such an early birth.

With the help of our family, friends, and online supporters, Team Holland and Eden has already raised over $34,000 for the March of Dimes. We hope to continue our tradition of being one of the top family teams in our region and we are setting our sights high! Please visit our page to make a donation and to assist us in achieving our goal of helping to save babies!

Thank you so much for you support in our fund raising efforts over the years, and thank you in advance for supporting Team Holland and Eden as we walk this year!

Thank you all so much for your kindness and support,
Billie, John, Holland, Eden and Violet!

Wednesday, March 26, 2014

So Much to Say

Daddy Daughter Dance 2014
Tomorrow morning Eden will be having surgery to hopefully improve her voice and give her better volume.  In January she was "officially" diagnosed with a paralyzed left vocal cord; a result of pda ligation surgery done when she was 12 days old.  At the time of her pda ligation, we were told there was a 20% chance that her vocal cord could be paralyzed.  We have since learned that with micropreemies (babies less than 2 pounds) this chance is actually much higher (perhaps as high as 67%).

Eden has always had a very quiet voice.  As a baby, when she would scream until her face would turn red and tears would flow, but no sound would come out except for some squeaks and hisses.  We have always suspected that her cord might be paralyzed, but we had so many other things on our plate that her quiet voice was not a top priority.

Now that Eden is older, the impact of not being able to speak up is becoming more apparent.  At home or in quiet settings when we are in the same room we can hear her.  It is tricky in situations where there is a lot of background noise, like in the car, restaurants, pool, as well as when she is across the house or in another room.  Sometimes we really struggle to hear what she is saying and she has to repeat herself a LOT.  It is also a struggle in social situations at school and in the classroom.  Eden is very social and makes every effort to participate in conversation, but she often has a hard time hearing what everyone is saying (because of only one cochlear implant), and they cannot hear her when she responds.  Kids are busy, and many times they do not take the time to listen closely or wait for her to repeat herself.  This has become more isolating over the years and she tends to gravitate now to conversations with adults who will make more of an effort to hear her (and make sure she hears them).

We initially learned of the reinnervation surgery from our friend Abby in Philadelphia.  Her daughter Hallie also had a paralyzed cord from pda ligation, and they were lucky to be near a voice clinic and one of the doctors who specializes in this field.  Hallie had the surgery over a year ago and they shared their good success with us. Abby was kind enough to talk to Hallie's doctor and surgeon about Eden, and she referred us to someone local who could help us.

Dr. Brown at the University of Michigan hospital did a scope of Eden's larynx in January and confirmed the diagnosis.  He was very optimistic about us pursuing the surgery for Eden and expressed that he feels that there is good hope for a positive outcome.  Hallie's doctor in Philly, Dr. Karen Zur stressed that this surgery should be performed within 7 years of injury, and Eden is 9 1/2.  This was not mentioned by our doctor in Michigan, but I feel glad to have the knowledge so I can have realistic expectations.

The reinnervation surgery will not "fix" Eden's vocal cord or make it move again, but over time it should help give it some additional bulk and tone, and prevent it from further atrophy so that Eden can get better vocal cord closure and more volume from her voice.  The reinnervation will take 6 months to a year to get full benefit, so at the same time Eden is having a vocal cord bulking procedure done which should give her some immediate results.  (Coincidently, another micropreemie friend Kaitlyn is having the same reinnervation surgery the day after us in Utah.  Eden and Kaitlyn had a fun Skype session this past weekend to hear each other's voices and chat about their upcoming surgeries (among other 8 and 9 year old topics of conversation:).

Once Eden has had a chance to recover from this surgery, we also have plans in the works for her second cochlear implant surgery on April 21st.  I just got confirmation on the date today, and am very happy to have worked it out on the first day of spring break so Eden won't have to miss any more school!  Eden's quiet voice is but one piece of the puzzle.  She also has a very hard time hearing other people in situations where there is a lot of background noise, like at school.  She has to concentrate so hard to filter out voices from background noise, and it really impacts how much she is able to catch from conversations going on around her. We have done a lot of research put a great deal of thought into this, before deciding that we need to pursue this option to help Eden hear optimally so she isn't missing so much.

It is really, really stressful on John and I (and Eden of course) to go through all of this after so long without any surgeries or hospitalizations.  We are feeling very apprehensive, rusty, and out of practice.  I would love to keep my kids safe in our bubble and never worry about any of this again, but life moves on doesn't it?  We are really, really hopeful that doing these surgeries will improve Eden's quality of life by making communication easier for her in the long run, particularly in light of the other challenges she faces.  Eden is very social and wants her voice to be heard.

She has so much to say.

Daddy Daughter Dance 2014

Daddy Daughter Dance 2014

Wednesday, December 25, 2013

Wednesday, December 11, 2013

Catching Up

While adjusting to Life with Vi, Holland and Eden rocked second grade, and the beginning of third.  We were so lucky to have a kind and amazing teacher for them last year, along with the continued support of the rest of the team.  They learned so much, and were able to work through some of their challenges.  They were also really lucky to be in a class with a great group of about 10 girls who became good friends.  It was pretty much smooth sailing over the course of the year.

This year has gotten off to a good start as well. We chose to keep them together in the same class once again.  They have two teachers who are splitting one job, but both seem to be good solid teachers and the girls don’t seem to have had any problems adjusting to the unique schedule.  Our biggest disappointment at the beginning of the year was that none of their girlfriends from last year are in their class.  I might have been more sad about this than they were.  They have made a couple of new friends, but we have also had some “girl drama” that we had been lucky to avoid up until this year.  It seems to be working out ok for now, and both girls are happy at school and seem happy when they get home.  We had conferences last week and their teachers had a lot of positive things to say about their personalities and behavior at school, which is wonderful to hear of course.  Both continue to struggle with math.  It is coming along, but it certainly doesn’t come easily.  They are both great readers and enjoy reading, but sometimes have a hard time talking about, summarizing, or explaining what they have read.  This makes it tricky to know exactly how much they comprehend when they read independently.  I am certain this skill will come with time. 

Eden loves to write, and has many fabulous ideas and stories to tell.  The physical act of writing continues to be a barrier, and we are always working on ideas for helping her get her ideas onto paper the most efficient way possible.  She has an ipad at school, and her aide often helps as a scribe, but a lot of the time Eden just wants to write it herself.  She is allowed to do this much of the time, but it slows her down and even though her handwriting has greatly improved, there are still times it is hard to decipher what she has written.  Eden has patience and determination in abundance, as well as a natural curiosity about the world, and will work diligently to achieve her goals.  Her current project is making rubberband bracelets using a loom.  This is all the rage at school for girls her age right now, and when we saw it at the store she HAD to have it.  We bought it for her assuming she would probably not be able to do it independently, but I enjoy that kind of thing and would be more than happy to help her.  Well, she once again proved us wrong and worked at it for a day or two before she was able to start making bracelets all by herself!  She is very proud and is working with dad to launch her very own website to sell some of her creations.

Holland also has good ideas and likes telling stories, but she really doesn’t like to do a lot of writing.  It continues to be a struggle for her to get started and to stay focused long enough to complete many tasks.  She does not have a lot of patience for tasks that require sustained mental effort, particularly writing and math.  She continues to have infinite patience and enthusiasm for video games and pretend play.  Her passion for Pokemon has dwindled somewhat over the past couple of months, to be replaced for the moment by Harry Potter (we just finished book three) and Animal Jam.

Both girls are doing Brownies again this year, and finished up two seasons of Miracle League Baseball at the beginning of October.  Holland started Choi Kwang Do lessons twice a week last February and recently tested for and earned her gold senior belt.  She is doing an awesome job with that!  Eden continues to ride horses 1-2 times per week at two different barns, one for hippotherapy and one therapeutic riding, though they are currently on hiatus for the winter.  Holland went to a week long drum camp over the summer, and has taken a few drum lessons.  Eden has had one piano lesson with her aunt (John’s sister) and is interested in continuing as we have time and can coordinate schedules.  Eden went to a sign language camp over the summer and really enjoyed that as well.  She would love to take lessons or a class to learn more but I just don’t think I can cram one more activity into our lives at this point.  Not and still maintain my sanity!

There are still so many holes in the blog due to the super busy nature of our lives. 

I never talked about the horrible illness Eden had last March that caused her so much pain and loss of function, and brought our lives to a major standstill.

I never talked about us looking into the possibility of a second cochlear implant for Eden, starting the process and the necessary testing. We are still on that path with another appointment coming up soon.

I never talked about ordering and receiving Eden’s new pink power wheelchair, a Permobil M300, and its pros and cons. That was quite a process (and still a headache).

I never talked about going to the Abilities Expo in Chicago in June, and all the cool things we saw and the nice people we met.

I never talked about our super-fun summer vacation to Michigan’s Upper Peninsula, Mackinaw Island and Tahquamenon Falls.  It was our first vacation as a family of five!

I never talked about Holland finally hitting a growth spurt and surpassing the 40-pound mark!  I also didn’t talk about her newfound love of mac-and-cheese for breakfast…everyday.  Who knew?

I didn’t talk about John and I celebrating our 15th wedding anniversary and our 20 year anniversary of being together as a couple.

What a journey it has been!