Christmas in Review

Prematurity Awareness

November 17 is Prematurity Awareness Day, AND the day that we celebrate 7 years since my amazing girls came home to be with their family after spending the first 110 days of their lives in the Neonatal Intensive Care Unit. There is not a day that goes by that I am not reminded of all that they endured to survive, and the lingering effects of their much too early birth. For better or worse, we have learned so much on this journey and are forever grateful to have these sweet and wonderful kids in our lives.

Happy Homecoming Day to my loves!

We've come such a long way...

Tonsils and Adenoids - Gone

First of all, I really want to say a giant THANK YOU for all of your tonsil and adenoid stories on my previous post. They were really, really helpful in letting me relax a bit and feel better about our decision to go ahead with the surgery for Eden.

Eden's T&A surgery was last Monday, Nov 7th, with a hospital arrival time of 1:45pm. This was our first shot at an afternoon surgery, and it definitely wasn't pleasant keeping her without any food or drink after 6:45am. Morning surgeries are definitely the way to go if you have a choice!

She and Holland both got a little weepy and emotional that morning as Holland was getting ready for school. They were feeling nervous, worried, and sad that they were going to "miss" each other, and we did have some tears. Once Holland was off, they each perked up and were fine until the drive to the hospital. Then Eden started to get all teary and emotional again, and I overheard her telling her doll "Pinkalicious" that she was afraid that she was going to die(!). That freaked me out a little - but I didn't show it. I just gave her a lot of reassurance that everything was going to be fine and it was no big deal - at the same time reassuring myself that this would be the case.

Once we were at the hospital and she had met the team of doctors she seemed to be feeling okay and didn't cry at all as they took her back for the surgery. We asked to be brought back to recovery ASAP because we were worried about how she would be waking up without her hearing (cochlear implant). She wouldn't be able to hear what they were saying, and we didn't want her to be afraid.

The surgeon was unable to do a "typical" T&A with Eden because the use of cautery (or anything electro/magnetic) during surgery can interfere with the internal component of her cochlear implant. Instead, they did what they called a "completely cold" procedure and we chose an ENT who has experience specifically doing the T&A on kids with cochlear implants. My understanding is that with this type of procedure there in increased risk of bleeding during surgery, but maybe less pain in long-term recovery. We asked to be kept overnight for observation (to watch for bleeding and to keep her hydrated), and they agreed to keep her.

The surgery itself took less than an hour, and we were brought back right away. The hour following was by FAR the worst part of the whole experience. She had a very difficult time coming out of the anesthesia, felt sick to her stomach, and was literally writhing in pain. At the same time she was figuring out that it was painful to swallow, breathe, and talk. It was awful to see and brought back a whole flood of memories and emotions. Once we finally got the right amount of pain medication on board and I picked her up and cuddled with her in the rocking chair, she was able to relax.

Four hours later they wanted to wake her up and start her on oral pain meds so she could "prove she could take them." Since we were staying overnight on an IV, I insisted that that first dose post-recovery be given in her IV, and that she be allowed to sleep. (This is where all of our NICU/hospital/surgery veteran experience proves handy;)) We agreed to wake her after a good 8 hour stretch of sleep to start the oral meds. This was the 2nd worst part of the experience. I got them in her, but it wasn't fun. Luckily it got easier each time. Even though the medicine was disgusting and she hated it, we were at least able to reason with her (and have a tasty drink handy to help her wash it down).

This surgery was done at our local University hospital, rather than at the hospital where we spent plenty of time in the NICU and pediatric unit, so it was a bit of a foreign environment. We had to share a room rather than having our own space. As (bad) luck would have it, the girl in the bed next to Eden was moved out at 10:00 pm. At approximately 2am a parade of people began coming in the clean the room, move furniture around, and bring in a new patient. The best part was when I woke up to see them actually taking off the foot of Eden's bed and PUTTING IT ON THE BED so they could move the other bed out of the room. Insane. I seriously think someone should do a Saturday Night Live skit about what it is like to "sleep" overnight in the hospital. It should start with a doctor telling a patient to make sure they get enough rest so they are able to heal..... I got a combined total of about 2 hours of seriously disrupted sleep. I finally just resigned myself to staying awake because it was less painful. Lucky for us (and for them), Eden is deaf and wasn't bothered at all by the noise. Between that, and the fact that it was just one night, I was able to find the humor in the situation and let it go.

At 5am the morning following surgery Eden woke up saying she was hungry and proceeded to eat a whole cup of vanilla hospital ice cream before falling back asleep. By 8:30am she was asking for scrambled eggs and french toast. One of my biggest concerns going into this was regarding weight loss and regression in eating, and I am happy to report that this really has not been a problem.

Another thing I stressed about was the expected "voice change." Eden has always had a really soft voice, and I was concerned that any additional muscle weakness resulting from the surgery would make her voice even softer and more difficult to understand. This hasn't been the case. Her voice is definitely different...maybe a little more nasally and a little bit "funny" sounding, but she is still intelligible and maybe even a little louder?? It will be interesting to see how this goes as she heals.

On the pain scale with the faces, Eden was rating her pain at 10 the first day. We were down to 8 by day 2 (between medicine doses), 4 by day 3, and 1 or 2 by day 4. At day 5 she told us she was a 0 and we weaned her off of the Lortab (vicodin) and onto straight Tylenol. Yesterday we increased the time span between doses to 6-8 hours, and quit waking her up at night for meds.

During the very first night I could hear an improvement in Eden's breathing during sleep...even with all of the swelling and gunkiness in her throat. The past couple of nights she is SO silent when she sleeps that we have to get really close to her to make sure she is still breathing! This alone is a great relief. We are very hopeful that this winter will bring fewer throat infections, less sickness overall, and an easier recovery when she does get sick. Only time will tell.

Today Eden went back to school. It was so nice this morning to walk her in and to hear all of her little friends exclaiming, "Eden's back!" They all smiled, waved, said hello, and a few came up to give her high fives. The best part was the huge smile on her face when she realized that she had been missed, and that everyone was happy she was back!

Sweet Cupcake and Pretty Kitty

Happy Halloween!!!!!!!!!!!!!

My Darling Daughters

School, Solutions, Schedules, and Surgery

The girls are finishing their third week of first grade today, and I am happy to report that at this point I am feeling optimistic about what the rest of the year will bring. They are in the same class at a new school, with a new teacher and principal. Eden was able to keep the same aide (this is their fourth year together) and that has definitely helped to make the transition go much more smoothly because Ms. Jess already knows Eden really well and doesn't need any training on equipment/transfers, etc.

I am so pleased with the overall positive vibe that I get from the school. So far, they have been very open to working with us, as well as kind, and most importantly ***solution-focused***. They seem to embrace the whole concept of inclusion (rather than just tolerating it). I don't think I will have to put up a fight this year over things like "I don't want a stranger taking my kid to the bathroom," "I don't want my kids to leave school 15 minutes before the end of the day," "I don't want my daughter to ride the bus to the field trip by herself," or "I don't want Eden always sitting in the back or on the sidelines." So far, the staff seems thoughtful and proactive in working to include Eden in all of their activities. And, even better, their teacher seems very interested in getting to know...and teaching...ALL of her students.

That said, we are still making adjustments to the plan and working to get all of the right equipment and support in place. It looks like we finally have a desk that works with E's wheelchair. The desks with the storage cubby under them do not seem to work because they are too high and difficult for her to get things in and out of. We are trying to figure out a good system for storing her books and supplies where she can get to them independently. We are also looking for a new floor sitting solution. She has used a straddle-sitter the past 3 years and it worked well, but this year E is finding it really uncomfortable on her legs, as well as "embarrassing", and difficult to get in and out of. She has been sitting independently on the floor some of the time, but still prefers to w-sit which isn't good for her hips. We are hoping to get ahold of another Child Rite chair as this works well at home.

I talked to the team about Eden's progress with the walker this summer, and our hope that she will use it at school this year. We came up with some good ideas/times that she will practice walking. I took her walker in to gym yesterday, and she spent the first 5-10 minutes walking laps across the gym. She did SO WELL, and it was clear that she was showing off! Transporting the walker back and forth everyday will be a challenge, so if we could find one cheap or used it would be helpful. She is using a size 2 Kaye Products walker. If anyone happens to have one lying around that they are not using please let me know!!

One of my major goals for the year is to get assistive technology in place to help Eden with writing. She is able to write, can form all of her letters and draw simple pictures, but it certainly not easy for her. Her letters are large and can be difficult to read. Ideally we are hoping to get an iPad for the classroom for assignments that require writing. This is going to be a challenge - at least definitely a learning curve, for all involved, (namely ME) but Eden is very adept with technology and I foresee that she will eventually do all of her written work on an iPad or computer so I am willing to learn. I hope to get the ball rolling on this very soon (which means figuring out the red tape and what hoops I need to jump through asap).

The schedule has been a major adjustment. The girls went to pm preschool for 2 years, and last year were in pm kindergarten, so have gone to school from about 12-4 for the past 3 years. They didn't have to get up super early, and we were able to spend adequate time feeding them. Now...they have to get up at 7am to have time to get up, dressed, potty, teeth, hair, breakfast, shoes, potty again, and out the door by 8:15. The morning's are a hustle, but we're managing. Another, more pressing challenge, is the fact that they are in school all day now, and "eat" lunch at school... They have to stay in the lunch room for at least 10 minutes before they can be dismissed for recess... Anyone who knows anything about my kids and how they "eat" can only imagine how well this is going... Let's just suffice it to say that we still need to work on it.

Eden was scheduled to have her tonsils and adenoids removed (today actually), but we had to reschedule because she has been congested with a bit of a sore throat and minor cough this week (the usual back-to-school virus). Her sickness is pretty mild, but we really need her to be in top form going into the surgery. We've rescheduled for November 7th. I am super nervous and stressed about it. In a way, it would have been nice to get it over with so I wouldn't have to keep imagining terrible scenarios over and over in my head. Eden has very large tonsils (they almost touch each other). We contemplated having them taken out when she was 3, but at that point we weren't really sure whether they were contributing to her feeding difficulties and didn't want to put her through an unnecessary surgery without knowing it would help. Last winter the girls had strep a few times and it was especially difficult for Eden to recover. I am also convinced now that at least part of her difficulties with swallowing and snoring (especially when she is sick), restless sleep, and morning grogginess, are due to her large tonsils. So I do think it's best to get them out before we are full on into another cold/flu season, but I am still incredibly nervous and worried about how she will recover... I have heard some negative, terrible stories that I am having a hard time shaking... Will welcome any positive outcome tonsillectomy stories to help me get through the next month!

A Friend

Eden got this letter from a first grade girl that she met on the playground yesterday. She was literally beaming when I picked her up from school. Last night she wrote a letter back that said, "To Abby, Yes I will, Love Eden!" Inside she drew a picture of a flower.

So thankful for parents who raise sweet kids.

And They're Off!

Holland and Eden's first day of 1st grade...I've got a good feeling...

Play Ball!!

Look what HOLLAND can do!

It's easy, on this blog, to focus more on Eden's progress and accomplishments, and to sometimes gloss over what Holland can do. It's a blog. I only update a couple of times a month, and generally highlight only the most monumental events in our lives. Eden's disability is obviously more severe, and everything major milestone she reaches is celebrated as spectacular - which it is! She has to work SO hard to achieve the things that come so easily for most of us, and we rejoice so much in Eden's accomplishments.

But I don't want to overlook the wonderful and amazing things that Holland is learning and accomplishing as well. Holland has a disability too. She was diagnosed with mild hypotonic cerebral palsy when she was two years old and just learning to walk. She also has a mild left hemiplegia - meaning that the left side of her body is more affected and has developed more slowly than her right. She has made really great progress physically over the past few years, and is able to run, jump, climb, and generally do most of what other kids her age can do. It is easy for us to forget that Holland even has CP when it's just the four of us, because we have only Eden to compare her to. The only time it really becomes apparent to us is when we see her around her peers, particularly when engaging in a physical activity.

Holland has a hard time keeping up with other kids her age. When she runs, she still pumps with her right hand fisted, and with her left hand open out in space. We have to remind her to "use your left hand!!" She does a great job of climbing up the play structures at the playground, but has a hard time getting herself back down. When playing a drum beat, she can move her right hand about twice as fast as she can her left. She still has a hard time dressing and undressing herself, let alone her dolls and Barbies. She gets tired pretty easily, and at events that require a lot of walking, will still ask to be carried at least part of the time. Writing is also a challenge - she is able to write and draw nicely, but tires quickly and gives up easily. Attention and anxiety are also issues that we deal with - nothing severe enough to warrant formal diagnosis at this point, but challenges nonetheless.

I say all of that just to highlight the fact that Holland's accomplishments are a BIG DEAL to us too! She might not have to work quite as hard as Eden to do simple tasks, but she still has to work a lot harder than your average kid.

This summer, like last, Holland did two weeks of gymnastics camp and two weeks of art camp while Eden was at CLC. I was particularly impressed with how well she did at gymnastics this year. She was able to run completely across the gym, on a squishy padded floor, without falling! She was able to jump really high with BOTH feet on the trampoline, without falling! She was able to hold herself up longer on the bars! She was able to hold herself up on the rope swing! And probably the most notable difference was that this year she could walk the length of the balance beam without falling - she couldn't do this at ALL last year!!! :-)

Check it out!!




She also brought home some really cool art projects, and seemed to do a good job of making friends.

An elephant made out of glitter clay...



A bird, in his natural habitat, made from sand clay...



And a pencil sketch of her family...



Way to go Holland! We are so proud of you and think you are amazing too!

Stepping It Up!!

Just 3 weeks into her summer camp program at CLC, Eden walked out of her classroom at the end of the day pushing a Kaye walker with NO support. I was stunned, amazed, and oh so proud. I still am. It takes my breath away.

Her progress these past 4 weeks has truly exceeded all of our expectations. Walking with this Kaye walker was a long term goal in the back of my mind...something I had hoped we would work toward into her teen years. To see her doing it now, at the age of 7, is more than I had dared to hope.

I am so thankful to the staff at CLC for their dedication to helping kids like Eden achieve their fullest potential. It truly is an amazing place.

They have asked us not to take pictures or videos at the school, so we made this at the hotel tonight after dinner. Eden was excited to share, and said, "Are you going to post it to YouTube?" Then she said, "I am going to be very brave and smile for the video."

So here is Eden walking...very bravely, and with a smile.

Seven!!!!!!!

Happy 7th Birthday to our beautiful girls! I cannot believe it has been seven years. It truly boggles my mind. Where has the time gone???

To celebrate we went on an overnight trip to Chicago and hit the American Girl Store. We also had dinner at the Cheesecake Factory, saw a surprise performance of the Pinkalicious Musical, and went to the top of the Willis Tower (formerly the Sears Tower - who knew?). Thank you to our wonderful family and friends who sent cards and birthday money to help make Holland and Eden's birthday wishes come true. It was all worth it to see their faces light up and to hear their squeals of excitement. It was so adorable to see Eden talking to her doll, showing her how to drive her power chair, and to see the look of pure joy on her face when people told her "Your doll looks just like you!" It made my heart so happy to hear Holland say with complete excitement, "This is the BEST day of MY LIFE!!!"

Holland reminded me today that I needed to put pictures on the blog and told me that I should write "This is the day that Holland and Eden got their very first American Girl Dolls." So here it is!

This is the day that Holland and Eden got their very first American Girl Dolls!

Sunshine

Yes, we have done it. We closed on our new house on May 25th. The girls finished up kindergarten. We packed up 10 years and 2 kids and moved. We became landlords when a new family moved into our old house on July 1st. Then, on July 10th, with a garage still full of unpacked boxes, we packed again and headed out of town for another 4-week summer camp at the Conductive Learning Center for Eden. The house we stayed in last summer was not available, so we are at a hotel this time. It's definitely pricier, so we are planning to head home on the weekends to save money. This is good on the one hand, because I will be able to get a little more unpacking done at the new house, but bad on the other hand because we are doing So. Much. Packing.

Camp is going really, really great, and we are actually having a nice time. Holland is doing her own day camps over the next few weeks to keep her busy with something fun and productive to do. This week she did "Clay Everyday". The kids made sculptures out of sand clay, chocolate clay, fruit scented clay, and glitter clay. She has brought home some really great projects and is really excited about making a new friend. Next week she is going to a gymnastics camp (same as last year), and she is super-excited about that as well.

I have been hitting the gym with a vengeance, and it feels GREAT for both my body, and my spirit.

This year is definitely easier because we know where everything is and have been able to settle into a routine a lot more quickly. Eden is happier because she is in a class with older kids (she is the youngest). Last year she was with the 3-6 year old group. There was a "crier" in her class (he was very sweet, but had a hard time adjusting), and it made it a lot more stressful for Eden. She did well, but even now remembers last year as being really "loud." A lot of this has to do with the fact that she has one cochlear implant, and it is a lot harder for her to hear in environments with a lot of background noise. This year the kids are older (6-8 years, I'd guess), and the overall setting seems a lot more calm, quiet, and organized. Eden is enjoying the fact that it seems like "school" and she is learning at the same time she is "exercising." Her class theme this year is "Have you ever wondered?" The kids are learning unique facts about animals, science, and nature. She has been super excited to go to class every day, and has a lot of information to share at the end of each day. She is also working hard, with a LOT of practice standing and walking. Today she walked out of class with her walker, and it was the best I ever saw her walk.

We really miss the "cheese house," but the pool at the hotel has been a major hit...especially because I have been able to master my technique at taking both kids (both who are non-swimmers, and one who is a non-walker and precarious sitter) to the pool by myself safely. It takes a great deal of patience, planning, stamina, and confidence (I often have an audience), but we've got it down now, and it's a blast.

These girls of mine, they keep me on my toes, but they are so cute and funny and cool that they make everyday brighter.

Here's just one example of why...

Eden's school, CLC, is affiliated with the PETO institute in Hungary. Several of the conductors for the program come from Hungary to work at the school. Two of the Hungarian conductors are in the United States for the very first time this summer. I was telling Eden about this yesterday. The conversation went like this:

Billie: It must be interesting for them to visit the US for the first time. It is very different here than in Hungary.
Eden: Well, do they have a sun?
Billie: Yes, they share the same sun as us.
Eden: Do they have ground?
Billie: Yes, they have a ground.
Eden: Do they have green grass?
Billie: Yes, I am sure they have green grass.
Eden: Well, do they have green trees?
Billie: Yes, they have green trees.
Eden: Well then, what's different? It sounds the same to me!

Oh they make me laugh!!

Still Alive!

Last Day of Kindergarten!

Goodbye 2010-2011 school year! Can't say that I am sad to see you go...

Looking forward to SUMMER vacation, moving into our new house very soon (!), heading to Grand Rapids in July for another 4-week session of Conductive Education for Eden, and a fresh start at a new school for first grade in the fall!

Home Sweet New Home?!

We found a new house!!!

Our current house has been on the market since July of last year and is just not going to sell for the price we need. Because of current market conditions, we would have to take a pretty significant loss, and we are not in the position financially to be able to do that. Recently, the opportunity to lease our house to a family who would like to rent for a couple of years, with the hope that they will then be in a better position to purchase, presented itself. Doing so would allow us to go ahead and purchase a new house that would be more suited to our needs before the girls start first grade.

I am not 100% comfortable with this...the idea of two mortgages is pretty daunting, particularly when thinking about all of the "what ifs." What if the renters don't make their payment, or leave us in a lurch??? Yikes. We really can't afford two houses.

When the offer first came up, I told them we needed some time to think about it. Then, just a couple of days later, we had a showing scheduled for our house. In the meantime, I had a house bookmarked online that I kept going back to. It had "disability features" listed as one of it's selling points, and I was intrigued as to what that meant. I had driven by the house a few time, and had driven John and my mom past. It looked good from the outside.

Somehow, the stars aligned...a new possible opportunity for leasing our house was on the table...a showing was scheduled on our house...we decided that we should go take a look at this other house. I told myself that I just wanted to an idea of what was out there. I was thinking along the lines of "what if someone made an offer on our house?" We didn't have any prospects in mind. I had been to look at several houses and hadn't really seen anything that would meet our needs. Even houses that looked to have good potential online would have numerous little *things* that wouldn't work for us. Mostly, the houses I was looking at were either too small, not laid out well, or had at least one or several *steps* making them less accessible. There were also issues with me (or John) not liking the neighborhood, not liking the yard, too much work needing to be put into it, etc, etc... I really hadn't had any luck finding something that I really felt would be *the one* so I wasn't too worried that our house wasn't selling.

So we went to look at this house. It was a Sunday, and we had to be out of our house for a showing, so John and the girls came with me for the first time. We knew shortly after entering that this was IT. It was the first house that I had been in that really felt like it could be our home.

It is 4 miles from our current home, in the same school district (good), but at a different elementary school (also good). We love the layout...all one floor with no steps at all. There is a ramp in the garage, and another to the back doorwall, making it wheelchair accessible. The doors and hallways are extra-wide, with pocket doors to the bedrooms and bathrooms. One of the bathrooms has a barrier free shower, with a built in bench seat, hand-rails, and two shower heads...one high and one low. All of that work already done!!! Almost too good to be true. On top of that, the kitchen was recently redone with all new cabinets and counter tops. I'm sold. I have to have it. This kind of house doesn't come along everyday.

We made an offer, and it was accepted. We met the family interested in leasing our current house, and they signed a 2-year lease. We are well into the process of obtaining a second mortgage. We are hoping to close by the end of May, spend the month of June packing and moving, and be completely moved out and moved in by July 1st.

This is such a huge, life-altering commitment and change. We can't help but be completely freaked out, stressed, and apprehensive. But at the same time we are also feeling really excited and hopeful. I have visions of Eden being able to go anywhere in the house, whenever she wants, independently. Being able to play with her toys in the playroom, go get in her bed at night, and never having to worry about the other kids running upstairs to play without her. As she gets older, I have visions of her using a walker to go to the bathroom and learning to transfer herself, independently. I see her as a teenager and young adult, being able to use the bench and rails in the shower to bathe herself, independently. This house will help us achieve those goals.

I feel sentimental about our current home. This is our first house and we have lived here for 10 years. It is our home. We have been through SO much here, having babies and raising them for almost 7 years. I will definitely be sad to leave. But I have such huge hopes and dreams for the new house. I feel like it is a place where we can watch our girls turn into big kids, then pre-teens, teenagers, and young adults, while we grow old together. These past 10 years have gone by so fast. In another 10 Holland and Eden will be 17...in high school, at the same age John and I were when we started dating. Another 10 years, and I am sure I will feel as sentimental about the new house and I do now about the old.

So here we go!!! Wish us luck as we make our way on a new adventure, a new house, a new home, and a new journey toward independence for Holland and Eden!

One Day at a Time

Just one more day until Team Holland and Eden heads out for our 6th annual March for Babies! If you are interested in supporting our team and helping us reach our goal, now is the time to make your donations. Thank you so much for your support in our efforts over the years!

As soon as this big event is behind us, I will fill you in on the details of our recent major, exciting, life-changing news...

Before you ask...NO, I'm not pregnant.

Hoppy Easter!