Off Topic

Generally this blog is meant to be about Lily and our adventures with Lily. But tonight I am going to use it to explain myself, mostly because this is the easiest route to reach so many of you that I care about and that care about me.

Over the last couple of months I have been on a crusade to figure out why I have been so stinking tired and worn out lately. To make a long story short the crusade led me to an endocrinologist who discovered I have an enlarged nodule on my thyroid. This is very, very common, especially in women. However, as with any enlarged nodule found any where in your body, it must be checked for cancer. I had a biopsy done this morning I will find out later in the week what the results are.

Mike very lovingly told me tonight that my attitude toward this whole ordeal may seem to others to be cold, uncaring, or seemingly unresponsive to the threat against my mortality. He held a mirror up for me to see myself as others may be seeing me, and I have to agree with him, that I am probably not clearly communicating my thoughts and feelings in a way that allows others to understand how I have come to deal with this. In most cases I haven't been communicating at all and this will be the first most of you are hearing of this.

If you were to ask me how I feel about this my general response has been "It is what it is." or "There's nothing to worry about until I get test results.". That's it, end of story.

Seems simple and straightforward to me. But apparently this isn't the reaction most people are expecting.

Let me begin by saying there have been so many times in my life when I have wept and cried and worried and wailed over things I was afraid would happen. And they never did. Then again, sometimes horrible things happened and I was entirely unprepared. This resulted in me feeling cheated out of my entitled to moaning, wailing, and gnashing of teeth - NOT!

I didn't feel one bit cheated. Over time I came to realize that the real cheating and stealing that was going on in my life was happening when I would spend countless hours, days, and weeks worry over things that I couldn't do anything about.

When Mike got sick, oh so many years ago now, I realized that every minute that I had him in my life was precious and that if I was going to have him for 6 more months or 60 more years, I didn't want to spend that time constantly worrying and fretting.
Now don't get me wrong, I still worry and have anxiety about all kinds of things every day. I am not some super woman who has everything under control. But I know who does. God has a perfect plan for my life, He sees the future, He has everything under control.

Have you ever had a passenger in your car start freaking out because they thought you, the driver, were going to hit or run into something? But because you were in the drivers seat you had a vantage point that they did not so you knew everything was going to be o.k. I am the passenger in this car ride called life. I have no idea where I am going or how to get there, but my Driver knows and I trust Him completely. The unexpected places He has taken me so far have been incredible and breathtaking. The route He took to get me to those places were not of my choosing but I would not undo one single twist or turn. What more amazing and incredible places might He take me if I quit trying to grab the wheel away from Him?

Psalm 62: 5-8
Find rest, O my soul, in God alone; my hope comes from him. He alone is my rock and salvation; he is my fortress, I will not be shaken. My salvation and my honor depend on God; he is my might rock, my refuge. Trust in him at all times, O people; pour out your hearts to him, for God is our refuge.

It is very, very doubtful that I have thyroid cancer. But even if I do God has a plan to use that in my life in some amazing way if I just let Him.

For those of you who feel better with statistics, 80% of thyroid nodules are non cancerous. Thyroid cancer is curable by removal of part or all of the thyroid.

Forgive me if my responses seem short, cold, or irreverent. They are not meant to be. In addition my clinical, practical, pragmatic approach to this situation, I very uncomfortable with being comforted, especially for something that I don't think I need to be comforted over. I appreciate the support of all my friends and family, but don't expect me to come cry on your shoulder right now. Not enough information yet. In the mean time I am just planning on loving every minute with my precious daughter and awesome husband, friends, and family.

Love, Jennifer

CCAI Reunion 2011

We have been looking forward to our first CCAI reunion for a year and a half! Today was the big day and it was sure worth the wait.
We have been here in Colorado since Thursday evening visiting with the Stroh's. What a great time getting to meet their other two boys (Caleb and Gabriel) and just hang out and reconnect/compare notes about the past 20 months. The girls (Elizabeth Grace and Lily) had an awesome time together. Elizabeth Grace is just a month older than Lily.
Today at the reunion, along with the Stroh's, we also met up with the Grippo's and Salsmans'. The girls in our four families are the closest in age of all of the kids from our travel group. We may have to name them the Firecracker Quartet or something along those lines because this group of 3 year olds is something else (I know, Keesa isn't quite 3 yet)! What amazing transformations they have all gone through.
Mike and I also had a chance to finally meet face to face some of the people from CCAI who played a major role in making Lily's adoption possible. What an awesome group of people!
It is hard to explain the bond that takes place among a group of total strangers when you go through the "birth" of your children together. We may not have a single other thing in common with each other, but we were together for some of the best and worst days of our lives for 16 days on the other side of the world. We are blessed to count every single one of them as part of our family. Wish all of you could have been there today, but you were certainly in our thoughts and conversations!

What a difference a year makes!

It is amazing to look back at the past year and all of the changes that Lily has undergone. From a little girl who could hardly sit up on her own to one who is sits proficiently, confidently, and is rapidly moving through crawling to standing and walking. From a little girl who was startled and distressed by any unusual or unfamiliar sound, who was silent in any group setting, to a little girl who is finding her voice and the confidence to use it.
Jeremiah 29:11
11 For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.

New Doctor, New Adventures

To say we have been crazy busy around here would be quite the understatement! It is the peak of bridal season for me in the shop, Mike has had people coming out of the woodwork with automotive projects, and then we decide to switch pediatricians for Lily.
Switching doctors in and of its self was not really a big deal, but combine it with everything else and new tests and more appointments makes for a little bit of craziness:-)
So why switch doctors now? Well we weren't exactly unhappy with our old doctor, but we weren't really pleased either. She was adequate, I think, but Lily was never really "sick" in the typical sense of the word. The little contact we did have with her was for basic well baby visits or to have her refer us out for Lily's club feet or hearing issues. We never consulted with her for therapy because Lily qualified for therapy though Wisconsin's Birth to 3 program. But Lily is going to be 3 in a few short weeks, which would mean that we would have to go to our doctor and request continued therapy for her, much more than is typically allowed per year through insurance. And we just didn't feel like this doctor would fight for Lily to get her the treatment she needed. So we said good bye and found a doctor who would fight for any and all treatments Lily might need.
Our good friends Roy and Kari found this doctor through one of the specialist's their daughter Mei sees at the UW Children's Hospital in Madison. He is awesome!!! He specializes in internationally adopted children and children with special needs. It was very obvious that he had extensive experience with children like Lily who come from difficult backgrounds. The questions he asked and the interest he showed in what we knew of her past told us that he knew what he was doing. He immediately ordered a whole battery of tests on her thyroid, liver and kidneys because he is concerned about her continued low weight even as she eats 5 full meals a day. She is still below the 3rd percentile for weight. He also referred us out for a genetics consult just to make sure we are not missing some weird or rare syndrome.
He also gave us strict orders not to discontinue any therapy what so ever and told us he will sign off for any and all therapies that her therapists requests. Yeah! We were really afraid that once Lily turned 3 that we would have to cut back and slow down or lose the progress that we have made so far. And she can keep her same therapists which will be awesome for her.
So far all of her blood work has come back normal. I think we are still waiting for a couple that will be back next week. The genetics consult is scheduled for August - I am looking forward to that, I have always been fascinated by genetics.
All I can say is it sure is nice to have a doctor who is so intensely interested in your child - we have some one who is a partner with us now who will advocate for her medical needs.

Momentous Day!!

Our little girl who can't even talk or walk yet(although she is working mightily at both) has decided that she wants to potty train herself. For about the last month already she hasn't been wetting at night. At first we thought it was a fluke but it soon became obvious that as soon as we would open up her diaper in the morning she would visibly push/grunt to relieve her bladder. She was sick of peeing in her diaper. She also started getting very agitated at different times during the day, which we have come to discover is her way of trying to tell us she has to potty.
So we started working on the sign for potty with her and just this weekend we got her a potty chair of her very own. We sat her on it a few times with her clothes on just so she could get used to sitting on it and she did very well. She has been on it a total of maybe 4 times with her diaper off. She has been rather puzzled by the new routine, but I just sat her on it for the heck of it before I got her dressed for the day, and what do you know! Lily peed on the potty!!! She was loving all of the praise:-)
I am not sure where this will go from here. We want this to be entirely positive and driven by Lily's desire, not ours. She continues to amaze us everyday. She maybe can't walk yet, but she sure is letting us know there are other things she can do and she is going to do them!

My Favorite Day

Today is the day I get to celebrate being the only thing I ever really wanted to be - a Mom.
Long awaited and most cherished. Thank you Lord for the most blessed daughter a mother could ask for.

Starfish

It was Lily's last day of swimming lessons today!! Her first report card and graduation all in one. She is officially a Starfish:-) And to top it off, it was her best day ever in the pool. She was relaxed and enjoying herself the whole time which hasn't happened before today.
For those of you who are wondering about her awesome green suit, we decided to invest in a wetsuit for her after her first lesson. The poor girl was so cold after her first time in the pool that she was literally turning blue and she wouldn't straighten her arms or legs. We found this company that makes kids wetsuits that are adjustable and will probably last her several years because it can expand as she grows. It made a huge difference! Hope you enjoy the videos!

Little Things

Lily had a week of awesome progress so I just had to share. Of course progress in Lily's world is marked in what, to most of us, are very small increments. But these seemingly little accomplishments are huge for her and have taken such incredible effort and determination on her part.
To put this in proper perspective let me just say that she had a horrible week in therapy last week! Lily who never cries about anything and hardly even complains cried through both of her physical therapy sessions to the point that I thought her therapist(Kelly) was going to start crying. Normally she is great for Kelly. We were all puzzled and worried, trying to figure out what we were doing wrong. Was she in some kind of pain, were her ears bugging her, her teeth are all in now so it shouldn't be that.....we had no idea what was wrong.
I could tell, when Kelly came in Tuesday morning, that she was nervous and worried about how Lily was going to do. No need to have worried. Lily blew us away. We have been working with Lily since last summer to help her figure out crawling. Well Tuesday all of the pieces finally came together. Now before you imagine her crawling across the room like a typical toddler, scratch that idea. She has come up with her own way of doing things, this may have been the source of the dramatic meltdowns last week! She wanted to do what we wanted her to do, but in a different way that felt safer to her.
Rather that getting fully up on her hands and knees Lily has devised several other options for propelling herself around the room.

The Frog - she will bring her knees up under herself just enough to push herself forward, sometimes coming almost full height on all fours, but not quite.
The Lever - this one is weird - sitting up with one leg bent and the other straight she will push off with her straight leg for leverage and scoot forward.
The Gymnast Scoot - this one is just crazy - sitting with both legs out in front in a really wide V, she will press into the floor through her heels and lift her butt off the ground several inches, somehow managing to inch forward?!?!?

Basically what we are theorizing (since Lily can't tell us) is that even though Lily has made great gains in strength she hasn't fine tuned the control of that strength yet. It would be kind of like driving a car that only had two speeds, dead stop or 90 miles an hour. That would be scary!! Up to this point we, without realizing it, had been asking her to go drive around town in that car:-) Being the smart girl that she is, she resisted until she could show us a safer and smarter way to get around town until we could get the car fixed completely. Because she doesn't feel like she can control her body in the traditional crawl position she has made her own modifications that allow her to move forward but still feel safe.
All of that isn't even the biggest little accomplishment she made this week, though. The biggest accomplishment for her has been finding the motivation/desire/inspiration, whatever it is, to want to move forward. To realize she doesn't have to stay where she has been put and that she can want something and fill that need herself. Tonight she was playing on the floor with her toys like she always does, but she realized she didn't want to play anymore and that she wanted Mike's attention. She left her toys and scooted over to where he was sitting in his chair and started batting his leg until he picked her up. Such a tiny little step forward yet I can only imagine the gigantic shift that is going on in her little brain, for her to realize this is a different world than where she came from. The world she was born into didn't allow for her basic needs of survival to be met, let alone wants, wishes, or dreams.
I think that over the coming days and weeks we will see a new, stronger, more vibrant, more expressive Lily than we have ever seen as her discoveries really start to sink in. To watch the transformation in her spirit is utterly amazing. We are so blessed that God has seen fit to allow us to be part of something so incredible and breathtaking.

Lily-an at 2 years 8 months

Everyday Improvements

At least it wasn't 3 months since last post! With everything going on I am surprised I remembered this. We (all 3 of us) are doing great. Jennifer has been getting busy in the shop. I have been working at my shop. The Healey will keep me busy through the summer. Most importantly, there is Lily-an. She is doing great. She is doing more and getting her strength. After the cast was removed she had no interest in wanting to crawl. She would just sit or lie down. Now, it is the opposite. She isn't crawling, but her strength/endurance is improved greatly. With her therapy sessions we have been working on strength and fine motor skills. Both, very important to crawling. She is on all 4's a lot. When we support her, she will go side to side but not forward or backwards. We have noticed her strength in her hips is weak. She gets a little wobbly. That is getting better though. Her legs are getting stronger and she loves to stand up. She sits very well and is well balanced. She sits on our knees with her feet on the ground and she will play that way for awhile. She really enjoys that. Her speech is doing great. She talks a lot now. Mostly for us. She is shy around others and doesn't say a lot. I should say, her talking is all kinds of noises. We are hearing more consonants sounds from her. She laughs and giggle a lot. Her non verbal communication is very good. She "tells" us when she wants more, when she is done and keep going. Her interest level in things going on around her is very good. She is aware of people, she looks up when you say her name or when she hears something. So much has improved lately. The little things that we are seeing are milestones. We enrolled her in a beginning swimming lesson course at the local gym. The first 3 times were not so good. We noticed a lot of anxiety. Other kids screaming, laughing seemed to upset her. We weren't sure what to do. One thing that we did notice is she was cold. She would latch onto us and wouldn't let go. She was so tense we couldn't get her legs straight. We knew this wasn't a good thing since we didn't want her scared of the water. We figured we would end up dropping out but then we started to talk about it and thought about a wetsuit. Do they actually make them that small we thought. Well, they do make them that small and even smaller. We located a company out of California that made them and ordered her a bright lime green one. It is adjustable so she can grow into it. We also ordered a headband that covers her ears. When we were reading up on the information provided on the website it was evident that little ones get very cold and get cold easily. Makes sense with Lily-an. There is no body fat on her. It came a fast 2 days later and the next day we ventured to the gym to try it. Let me say that some kids have absolutely no respect for others around them. That 10-13 age of kids. Kept bumping into us and well..... enough of that. Frustrating. Lily-an did great. She wasn't cold anymore and wasn't tense. We were able to move her arms and legs in the water and she seemed like she wasn't as anxious as before. After about 30 minutes we decided it was time to go. Lily-an was tired and figured it was time for a nap. Went to lessons a few days later and she was relaxed and doing very well. Then came the surprise when the instructor said it was time to "dunk" the kids. I was watching from the chairs and Jen was in the water with her. I didn't hear the instructor say that. I was watching Jen and Lily-an and all of a sudden under she went and out she came. Somewhat startled look on her face, rubbed her eyes and she was fine. Momma was more apprehensive than anything, I would have been too. Lily-an was playing with a beach ball and it went well. Lily-an was actually kicking her feet at the end and started to laugh. It was a good day. And, she was warm! Can't wait to see what comes out of her during the next classes. As the class was ending she started to kick her feet and actually was laughing. What a good thing. There has been so much change in her lately. Tonight we went out for some fish fry. She likes fish. One thing she has been doing a lot and that is grabbing at her food dish and pulling it towards her. Another one of those non verbal communication things she does so well. Well, tonight at dinner, she put her hands in the mashed potatoes. So then Jennifer took her arm and guided her fingers to her mouth and what do you know, Lily-an put her fingers in her mouth with food and sucked off the potatoes. I about fell out of my chair. We have been working on that for quite some time. She has such an adversion to putting her hands to her face but she proved me wrong. She did this a number of times tonight. I think it is time for things to get messy. We are going to start putting food in front of her and letting her go at it. Maybe that is why she has been grabbing at her food dish. She has been trying to say she can do it herself. Who knows. Something so minor, something we take for granted and don't even think about is such a huge deal for us. That is so important to her development to do that. That shows right brain/left brain communication, spacial, depth and more. We were so happy to see. Then she starts to laugh and giggle about it like she was saying "I told you I could do it but you kept moving that dish away from me". It will be interesting. She is growing and weighs about 22 lbs now. She eats anything you give her. Loves fish, yogurt, refried beans, Her hair may need a trim now. Will wait until it gets warmer out. It is growing and getting thicker. Maybe if we cut it a little it will grow like a weed then. Well, another week is gone. Lily-an is sound asleep and it is past my bedtime. Keep us in your prayers and especially Lily-an. God is doing such great things with her. I do believe God is putting in on our hearts about adopting another. That is still a few years off, but it is there. Every now and then we go to our agencies website and look through some of the pictures/information of the special needs children and they just grab you by the strings and pull. If we could, we adopt them all. So adorable. I don't know how we have been doing as well as we have been. Somedays we are so tired and wore out. We want to put as much as we can into Lily-an and make sure all her needs are met. I think Jennifer and I kind of let our needs go for each other at times. This isn't healthy. I have been trying to relax more. I have cut way back on EMS as I felt my stress level getting out of hand. I feel better now. I sleep better at night and I try to take time to relax. It has helped. I know God is sustaining us and giving us the strength to do what we do. 5 or 6 therapy appts every week plus our "jobs". We always do our best so both of us are with Lily-an during her therapy and doctors appts. Rarely, do either one of us miss. All I know is that I (we) can't picture our lives any differently than they are now. Take care everyone, God Bless.

Where did the time go?

Can't believe it was Thanksgiving since our last post. Hard to believe that was 2 months ago already. With everything going on for Jennifer and I we sometimes don't know what day of the week it is. Well, since the last post a lot has changed. For the good I might add. Lily-an finished her series of casts and had surgery on December 6th at Childrens in Milwaukee. She also had tube put back in that day since the first set had came out. They only lasted 6 months or so. Not really sure on that. The surgery was to help lengthen the achilles tendon. This is a very simple and short procedure. Her incision was about 1/4 long and that was it. Unfortunately, she had a cast put back on and she had to have it on 4 weeks. This was to allow the tendon to heal properly. Between both procedures she was gone about an hour. We were able to leave for home around noon that day. She recovered well and had no side effect. We started to notice some changes in her regarding her speech. It was long after the tubes that she started to vocalize more. She seemed much more expressive. Now that it has been 2 months since they were done there is a night and day difference in her. She is much more aware of her surroundings. She is very expressive if she is frustrated. She "talks" more. A lot of voice inflection. The tubes must have helped her hear. She is making more consonants now. We think her speech is coming along nicely. He left foot looks great. It has a much wider range of motion and the surgery was successful according the the doctor. She is working on crawling and so bad want to move around more. She get around quite well as it is but she know she can do it better. I think crawling is around the corner. We are noticing that when we try to help her, you can feel her legs wanting to move but her arms don't want to yet. She is getting stronger and her arms and shoulders are doing much better. She is determined. Sometimes I wish I could have her determination. She is strong willed that's for sure. Right now we have therapy 5 times a week and every other week, she has one more session where the coordinator comes and checks up on Lily-an's progress. They all have said she is doing very good and progressing very well. Once that cast came off at the beginning of January, she really started to move around. The cast kind of kept her in one spot making it difficult to move but once it was off, watch out. He did gain a little weight so that is good. Today she weighed in at 21 lbs 5 oz. She has gained about a lb since surgery so that is good. She eats like a horse and will eat about anything. Her chewing is getting better. Probably in part to all but one of her teeth coming in. We really don't think about it, but her muscles are weak also in her mouth, jaw, her tongue, cheeks, etc. They also need to build strength to help with chewing and talking. She is chewing food nicely and her muscles are building. You can tell when she gets tired of chewing. She eats whatever Jen and I eat. That is good. We don't have to mush it up any more. We just cut it into pieces that are the right size for her now. Easier for us. We still have to feed her but we have been working on that too. She now takes the spoon and will bring it to her mouth and feed herself. We just help guide it to her mouth. If we don't, she plays with the spoon and drops it. Than Oscar, our dog, gets to have some treats! He doesn't complain. He waits patiently under her chair. She hold her cup now and will drink out of it then put it back down. We help her hold it and bring it to her mouth and she does the rest. There have been so many changes the last few months it is hard to keep track of them all. Everyday is an adventure and we love it. Yes, we are tired a lot more. Sleep is precious for us. Lily-an will sleep 10-12 hours a night. Sometimes wake up at 4am laughing and playing, but give her a bottle and she is soon out, sometimes. We think we figured that out, she is hungry. We feed her a snack before bed and that seems to have worked. I don't know of many children, let alone, anyone else that wakes up with a smile on her face and is laughing and giggling. That is what we get to experience everyday. What a joy it is to share in her happiness. That makes everything worth it. No matter how much we are tired, sick, rundown, whatever, that smile and laughter makes everything else go away. Yes, we are busy. Most of our day is consumed and disappears because of what we are doing with Lily-an, therapy, drs. appts., whatever, but, we will not trade it for the world. We don't have a lot of time to ourselves or really with each other anymore, but that is life and that is what happens when children come into the picture. Especially one that has some needs and you have to be there for her all the time. I don't take anything for granted anymore and I doubt Jennifer doesn't either. Our life is our daughter in a way. We love doing it. Parenting is a responsibility and we can't take it lightly. We would not go back to our lives before we got Lily-an. We both say that. Life was good before, but empty in away. It isn't empty anymore. We do almost everything together as a family. Both of us are with her during her therapy, unless one of us in on an EMS run. We schedule our days around Lily-an and what is going on with her. It is so much fun watching her grow. She is blossoming in so many ways. It won't be long and she will be crawling and moving about. That will be sooner than later. Looking back over the previous year and everything that has happened, going on, whatever it may be has been a whirlwind. Days go by fast and time does disappear. But, we wouldn't change it for the world or want it any other way. (maybe the next post will be sooner than 2 months) God bless everyone, keep us in your prayers for strength, wisdom, serenity. God is good and we owe everything to him. He keeps us grounded and gives us strength when we need it. Most of all, He is working through Lily-an. She brings joy and happiness to everyone she meets!

A Thankful Day.

Hard to believe that today is Thanksgiving. That means winter is coming and the way it feels outside I would say it's close. We have had a very nice fall. Warm temps, a lot of sun, little rain. Until this past week. I think all that nice stuff is gone for now. Started thinking about Thanksgiving and what it means. Think back to the original settlers who started it and why they did it. Then I started to think about what I am thankful for this year. I am not a sentimental person or anything like that but I do reflect on a lot of things. I thank God for this past year first and foremost. I try to thank him daily so this is nothing different. We have a roof over our heads, clothes on our back, some food in the pantry and a few other things. I am thankful to be a father. I have a beautiful daughter who has taught me so much. I would never go back to life before her. Some people may look at us wonder why did we adopt a daughter with special needs. You had a choice, you could have had a "healthy" child. Well, God didn't have that in mind for us and if we had chosen to stay in the traditional program, we would still be waiting. Even with all the appointments during the week and the recent trips to Children's in Milwaukee it is all worth it. She brings so much life and energy to our house. She is rarely sad or unhappy. The smiles and her laughing can make anyone laugh no matter how they are feeling. It's hard to believe that a child with a very rough start in life has that attitude she has. I am thankful for that ray of sunlight she brings. Jennifer and I both agree that life is so much better now. That one piece that was missing for so long is no longer missing. Life is full of blessings everyone. Sometimes they are hard to see but they are there. I am thankful for a wife that puts up with me. I am a stubborn person sometimes. Must be that Norwegian in me. She loves me no matter what. We have been together over 20 years now. :) So thankful that Lily-an is growing, developing and doing so well. She is a strong willed child just like her Chinese name means. Who would have thought. So much to be thankful for this year. So much has gone on it feels like a whirlwind at times. But still thankful everyday that God has blessed our family so much beyond anything we could have imagined. I don't know how we do it somedays but we do. Thankful God is there to guide us through. Sometimes we have to make decisions, thankful that God is there to help with that. Thankful for a great year. Thankful in advance, good or bad, for the year to come.

A prayer for Lily-an

I can't believe how fast this past year has gone. I haven't blogged anything since we got home. I know Jennifer has been doing it but I haven't. She seems to do a better job at it than me. Today was a rough day. It was hard for Lily-an but also Jen and I. We knew going to Childrens today might be an upsetting day for her. Anytime a doctor has to look in Lily's ears or mouth, it is a struggle. She flat out does not like it. Well, after our last ENT visit in July the doctor recommended that she clean out Lily's ears. We opted not to because we knew it would upset her but also we had an appointment to get her legs casted for braces and didn't know what to expect and figured it would be too much. The casting went ok but she was upset which we expected, not bad though. Today, I had kind of had the feeling it wasn't going to be an easy day at the clinic. The nurse practitioner looked in her ears and said there was wax and she couldn't see the tubes clearly and thought they had come out. There was also dried blood. Not such a good thing. Well, she said she would have to clean the wax out so she could see. Oh boy, was that rough. Lily-an was one very mad child. She was pissed to say the least. The NP could only get a few small pieces of wax out and wasn't able to see a whole lot more. Lily-an was making noises we had never heard before she was so mad/upset. She had no bones telling us either. The NP prescribed a ear drop medication to help soften the wax and clean up the ear canal. We go back in 2 weeks for a follow up and we pray the ears are cleaner so she can see the tubes and ear drums. There is a possibility that Lily-an will not need tubes put back in if the ear drums look good and the fluid is draining like it should. We have to put drops in her ears twice a day she said. Well, 30 minutes later she was still upset. She was telling us what she thought of that. It is hard to hold your little one down like that. She doesn't understand and we can't explain it to her to help. It is just something that has to be done. I am guessing it will be done every 3-6 months now. I don't think we will have a choice. Maybe it will get easier.
Tonight went well. She fussed only a little when putting the drops in and then was her happy self. Then off to bed.
As for the ortho doc, he said there is a possibility that she won't need to have the surgery after the casting is done. If the foot stretches enough then she may not need it. The good thing is we talked with ENT and Ortho and they would be able to the 2 surgeries at the same time. That would be nice. It would be easier on Lily-an. Both surgeries would take 5 minutes total. Very quick to do. I am asking for prayer for Lily-an. We know God has his hand in all of this and is doing wonders in Lily-an we get to experience everyday. Pray for the doctors, pray for Lily-an that she wouldn't need either surgery - yes, we do believe in miracles, pray that Lily-an is comforted through the whole ear thing and the next 10 days with the drops. In 2 weeks that the ears are clear and the fluid is not built up behind the ear drums requiring tubes. She is one tough child. She will take it all in stride and if the surgeries are required, we will do it because we know it is best for her. Last but not least, pray for us the we have the wisdom to know what to do. Peace is always good for us. It was a stressful day for us.

Another First

Well, this wasn't a first that we were expecting to record today, but what parent is ever expecting to bring their child home in their first cast? Luckily no broken bones are involved!

Lily had a standard check up with her orthopedic doctor this morning to check the progress of her feet. She has been wearing new braces since July to help correct her foot positioning and to stretch her achilles tendon. When a child is born with club feet, basically the achilles tendon is to short/tight and this causes the foot to curl. The tighter the tendon the more severe and debilitating the condition becomes. The standard treatment is to have the infant wear a series of casts that increasingly stretch the tendon and then to maintain the position achieved by the casts by having the child wear braces at night until they are old enough to walk(Lily had this procedure done in China). Once the child is walking the weight of their own body will keep the feet properly aligned and the achilles tendon lengthened and they will no longer have to wear braces.

In Lily's case the casting/braces worked well on one foot but not on the other. Normally a child her age has been weight bearing on their feet for quite some time. Lily is not and that is probably a contributing factor to her left foot reverting to its old position.

Now in addition to the series of six casts that she will wear over the next 6 weeks, she will under go surgery to lengthen her achilles tendon. It is hard to have to put her through this, but this is something we have to do now otherwise we are risking her future ability to walk and run and play. The older she gets the less and less flexible and malleable her joints and tendons will become.

Lily has taken this all in stride. Not one single complaint out of her so far. Thankfully we only have to do the one foot. She is such a trooper!

Connections of the Heart

As Lily ushers in her second year of life I can't help but think about how different her life is today compared to her life in China. Even as she makes miraculous strides in development, in many ways they serve as a stark reminder of just how extremely deprived and damaging her first year and a half of life really was. Something as simple as walking underneath a canopy of trees is a stunning and delightful experience for her. Yet with all of the new and beautiful things and experiences at her finger tips, she still withdraws to her private, personal shell (though less and less). And while it may seem like every parent's dream to have a child the rarely if ever cries, for me, it is a gut wrenching reminder that humanity proved to her early on that crying does no good and no one cares anyway.
Our little flower is getting stronger and healthier every day, but it will take a long time and constant, intense care and love to help her set her roots deep to give her the stability she will need to bloom in abundance.
And in answer to the many unspoken questions and concerns - yes we know Lily isn't doing all of the things normal 2 year olds do. No we are not oblivious to her delays, nor are we glossing over them and hoping they will just go away. I think many people are worried that we are simply blinded by love and don't see the reality of how significant her delays are - rest assured we know. What we do have is a strong and deep faith that God will help Mike and I help Lily reach the full potential the He has in mind for her. I don't even try to imagine what plans God has for her, because if I try to do that with my limited imagination I might unwittingly inhibit a potential that is beyond my comprehension.
I hope this posting doesn't seem heavy and depressing because it isn't meant to be. Lily is such a tremendous joy and blessing. Every day she teaches me new things about love, life, strength, determination, and above all else, faith and hope. The scripture that we started this journey with is even more true and fitting today than it was then: Hebrews 11:1

"Now faith is being sure of what we hope for and certain of what we do not see."

I cannot see the future, but my hope rests in God who brought about the miracle of this little girl in the first place and took us on the most amazing journey to unite us as a family.

New Month, New Adventures

Can we really be in March already?! Time gets screwed up when you have kids I am finding:-) It feels like just yesterday that we brought Lily home, and at the same time it feels like she has been with us forever.
Lily is changing so fast we can't even keep track of all of the progress she is making on a daily and sometimes hourly basis. She is getting so strong and she is really beginning to develop her own personality. She is sweet and quirky and a little goofy.
What can I say - we are so blessed by God to have this little firecracker of a girl in our lives. I can't even begin to describe what it is like to watch God working so directly and evidently in our lives - in her life.
Thank you God.

Jennifer

Valentine's Day/Chinese New Year 2010

Thought you all might like to see some pictures of a little girl who is blossoming into the most amazing little personality. I think it is pretty easy to see the difference from the pictures at Christmas time to the ones we took today.
Two weeks ago Lily had tubes put in her ears and the advance hearing test done that tested her brain stem response to sound (ABR test). Once again God has answered our prayers and shown us His amazing power of healing and restoration. Her hearing test came back with 99% perfect hearing. They are going to watch her right ear because at the very lowest tones there was a questionable response but they are fairly certain that is because of the considerable amount of wax that was in that ear in combination with having the tube inserted that was causing the questionable reading. Even if there is a small amount of hearing loss at the lower level it is not anything that will cause her any kind of impairment - most of you who have ever spent any time listening to rock and roll probably have more impairment than she does:-)
It is so easy to watch God answering prayers for this little girl because it is so easy to believe that she deserves to have these prayers answered. But God loves each and everyone of us just as much as He loves her and He wants to show us that, if we would just ask Him to come in to our hearts.

"Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows. " James 1:17

Jennifer

Praise God!

A lot changes in the course of 6 months! Last May/June we were looking at the file of a little girl who was stealing our hearts with her smile. A little girl who we were told had serious hearing loss and serious developmental delays and possibly mental retardation. We prayed a lot. God is this the little girl you have chosen for us? God are you sure we can handle all of these medical/developmental problems? What if she is too broken, God? What if we don't love her the way you do? We can't see the future, God, but we can see all of the big and scary what if's, so what if? We can't see where this is going God!

Back to the verse with which we started this journey:
"Now faith is the substance of things hoped for, the evidence of things not seen."

We could not see the beauty and purity of spirit that we have come to find that our Lily possesses. We could not see the inner strength she carries in her thin and delicate frame. We could not see her determination or her boundless joy and enthusiasm for life. We had no assurance of healing for her delays and physical difficulties.

Yet we hoped and prayed for all of these things.

On Monday Lily went for her hearing test. Not only can she hear in both ears, and pretty well at that, her hearing will be dramatically improved with the simple procedure of having tubes placed to remove fluid build up in her middle ear - a common problem that so many children have. She does have considerable fluid build up, and has probably had that most of her life. Because of her age and how long she has had difficulties the doctor will also do a more advanced, thorough hearing test at the same time as her tube placement to pinpoint exactly what she hears and the quality of that hearing. At this point it looks like any hearing loss she will retain after the tube placement will be minimal!

Lily is daily growing in strength and in personality:-) To think that we could possibly have missed the beauty and wonder of this little girl is an unbearable thought! Thank you God for giving us the faith we needed to trust in your plan for us and for Lily.

Jennifer

More Pictures

I especially love the picture of Lily with her cousin Parker:-) Lily seems so tiny and delicate, but look how long she is next to 3 year old Parker?!! She would be almost as tall as he is if they were standing up - LOL!!

Time Flys!

Well, here we are, nearly the middle of January already! Wanted to get a few pictures up from the holidays so here they are. Lily sailed through the craziness of Christmas without missing a beat.
She is continuing to gain strength and size. We weighed and measured her at the end of December and she had gained 2 1/2 pound and 2" in length since the end of November!! She sleeps 12 hours a night and takes a two hour nap almost every day. She eats like a horse, pretty much every two hours she needs food. I guess I would eat everything in site and sleep the rest of the time if I was growing that much too:-) She is at a total of 18 lbs. and 31". Of course she still looks like a string bean because she is growing in length so much, but she has definitely filled out.
Looking forward to meeting with the Ear/Nose/Throat specialist at Children's hospital next week for an evaluation of her hearing. Anxious to hear what they determine her hearing abilities to actually be. Other than that Lily is just plugging away at her physical, occupational, and speech therapy every week. She has a more complicated schedule than we do! - LOL
Enjoy the pictures!