Strong and Determined

The Chinese attributes for the Morningstar Lily, which our Lily is named after, are strength and determination. Lily may not be able to talk, she may not be able to walk, she may be months and months behind her peers in her development, but this little girl has so much inner strength and determination, she blows me away.
Today we started out very early with appointments. First we went and picked up her new braces - yeah! We are very happy with them, we are looking forward to working with her in them.
Then we went to get fitted for the take home EEG. Basically they took goop and band aids, stuck 25+ electrodes to her head, and mummy wrapped her head with gauze. With a big cord coming out the top of her head attached to a little computer pack we were supposed to go happily on our way and proceed normally through the next 72 hours - haha - real funny!
We actually did pretty good at first. Lily even had an awesome therapy session. We came home and had dinner, but come time for bed the S & D kicked in to overdrive. Lily was bound and determined that she was not going to go to sleep with those things on her head.
Mike had his hands full while I was at my EMS refresher class. By the time I got home it was after 9:30 and she was still wide awake, but taking a break from her attempts to dislodge the electrodes. I wish he could have taken video of her because I know some of you will just think that maybe Daddy didn't know how to put her to sleep, but that is only because you have never seen this girl when she is on a mission. When I did get home she had already managed to get all of the gauze and tape off and was working on the electrodes themselves. Imagine a writhing baby crocodile, a very, very mad baby crocodile. She refused to let Mike change her clothes or even touch her head, except for when he told her he was just going to take some of the gauze off. Hmmmm......this girl knows what she wants.
Mike had managed to call the clinic's help line by this time and they said just take everything off because if the electrodes are moved or not seated properly the test won't work. So we took all of the stuff off. Washed Lily's hair to get all the goop off and she went right to sleep.
Defeated by the strong and determined one. We are declaring a temporary vacation from all doctors and all doctor's tests. Mike and I pretty much feel the same way Lily does right now. We're going to bed.

Big Day

This picture about sums up Lily's attitude through out her first day of pre-school! She was quite the happy and excited little student. I was a little worried that she would get overwhelmed by the noise and craziness because she has, from time to time, been overwhelmed in the Sunday school preschool. There was no need for me to worry. I stayed for the 2 1/2 hour session, mostly just to observe her for signs of stress, and she did great. She jumped right in and actively engaged anyone who came with in her reach and charmed her classmates and teachers alike with her very best smiles. She even brought out a couple of kisses for the coordinator. Hmmm...I think somebody knows exactly who to butter up too!!!

Knit One Purl Two?

Now I am not a knitter, I am a crocheter, so forgive me if I have the terminology incorrect, but I understand the basic principles:-) One or two needles are used with yarn to create a series of knots. In both knitting and crocheting a pattern of "knots" is generally followed to produce an expected outcome (a hat, scarf, socks, etc.).

King David claimed God to be a knitter.

Psalm 139:13
13 For you created my inmost being;
you knit me together in my mother’s womb.

There is something very comforting to me about imagining God sitting in His big God rocking chair knitting me together. It also will help me explain, I think, what we found out today from Lily's test results.

We got back several test results all at once today. Lily had a genetics consult back on the 1st of August at which time they evaluated her to see if she fit the criteria for genetic testing, which she did. Basically she has had ongoing delays with an unknown cause so they can legitimately ask for an analysis of her DNA to look for genetic syndromes or other issues with her DNA. Genetics were also concerned that she may have misshapen vertebrae in her spine so they also wanted x-rays. Due to the seizures that started last month she also had an MRI of her brain done last week (genetics wanted one as well).

MRI came back as unremarkable. That means perfectly normal!! Yeah God! There has been an off chance all along that Lily could have mild cerebral palsy or some other type of brain abnormality. The more and more we have come to know our daughter the less and less we believed those possibilities, but the doctors needed proof and now they have it:-)

The spinal x-rays, as well, came back completely normal.

Now to explain what they found in genetics. First what they did was comb through all of Lily's chromosomes to make sure she wasn't missing any or that she didn't have any extra. Then they look even closer to see if any of the chromosomes are formed differently than what they believe to be standard. There are variations within standard so sometimes it is hard to tell what is actually enough of a deviation to cause problems.

Lily has the perfect 46 chromosomes, 23 pairs. However, on chromosome #2, she has a tiny add on. When a chromosome has extra material or is missing material it is described as positive, negative, or undetermined. Lily's addition is classified as "undetermined" because it is such a small amount of additional material that it may be standard. Another reason that it is classified as undetermined is because so few people have been discovered to have this deviation. One way we would have been able to establish if her deviation was standard would have been through family history, which of course we do not have.

From the limited research that had been done on this chromosomal difference three traits have come up fairly frequently (geneticists are only just beginning to understand what each chromosome does). The three traits are delayed gross motor development, delayed intellectual development, and febrile seizures. The other trait, common to many children with any type of chromosomal issues, is difficulty "growing". In Lily's case, gaining weight.

So what does this all mean and what do we do now? First off it means we praise God!! We are so thankful that we have answers and good answers at that. I know some of you might be thinking that this is horrible news, but really it is truly amazing and wonderful news to us. Lily does not have some horrible disease or syndrome. Her brain is completely intact, functional, and perfect. Her body is strong and healthy and growing stronger and healthier every day.

There is no ceiling on what Lily can achieve in this life. She may have to work a little harder and a little longer to get the same results as her peers, but there is nothing standing in her way to physically stop her from doing anything she is determined to do. God had meaning and purpose when He had us name her after the Morningstar Lily, which stands for strength and determination. God, and the strength and determination He has gifted her with are all she needs to succeed in this life. We will throw a lot of love in there for good measure:-)

A master knitter doesn't use a pattern - they create the pattern. There is also no such thing as a mistake to the Master either. The Master makes all things beautiful. God gave Lily an extra stitch because He wanted her to be an extra special girl.

Summer

This picture just about sums up the summer:-)

God is Good, and Weird, Apparently

Finally! I can officially report that I do NOT have thyroid cancer!!! After thinking that I had the all clear after surgery two weeks ago we got some unexpected bad news last Friday at my check up. The complete pathology had come back with the discovery of some "weird" (doctor's words) looking cells. Their pathologists didn't know what they were so my samples had been sent out to the Mayo Clinic for further diagnosis. Talk about bummed out!! If the cells were determined to be cancerous that would mean that I would have to have the surgery all over again to have the remaining thyroid half removed.
I got the official word this afternoon that after FOUR Mayo clinic pathologists reviewed my samples they were determined to be benign. The nurse said my samples were very popular due to their weirdness:-/
I guess this falls under the category of "fearfully and wonderfully made" in God's creation department, lol!

Nothing to report on Miss Lily yet. She has not had any more seizures for which we are thankful. She had her MRI yesterday and has an EEG on the 7th. We will just have to wait and see what all of the test results say and go from there. She just keeps forging ahead with her typical good natured determination.

I am just glad and thankful that God is allowing me to focus my full attention back on my little girl:-)

Weekend Round Up

Wow! What a crazy week last week. Dad had major surgery to repair a herniated diaphragm on Wednesday, I had my thyroid surgery on Thursday, and Lily had another seizure while I was in the hospital. I think we have had enough medical drama to last us for say, another 30 years or so:-p
So - Dad is doing pretty good. The surgery was pretty extensive so he has been in ICU, but they are hoping he will be out tomorrow. My surgery went perfectly. The doctor was very pleased and told me I had a beautiful neck for operating on (gee thanks doc:-/). The biopsy showed no signs of cancer. They will still be doing a more thorough pathology that I will get the results of next week, but at this point it looks highly unlikely that they will find anything. I have much less pain than I was expecting and I feel remarkably good. Praise God!
Now Miss Lily. Lily had recovered very well from what we thought was a fever induced seizure (febrile seizures) back on July 30th. She obviously had some kind of virus because she continued to fight the fever for several days after the initial onset the day she had the seizure. She was back to her normal self and we didn't think too much of it. Febrile seizures are very common in little kids.
Thursday, the day of my surgery, she was her regular happy self up until about an hour after they took me off to surgery. At that point Mike said she went into major meltdown mode. He assumed that she was upset that she hadn't had her snack yet. Eventually he got her calmed down and was able to feed her and then she fell asleep. I was coming out of surgery by this point and it was as they were wheeling me into my room that Lily started seizing in her sleep. I was with it enough to know what was going on, but out of it enough not to care too much. I just told Mike to go and not worry about me because I was falling back to sleep anyway:-/ Mike immediately got her down to the ER and the docs took it from there. No fever this time and since it was her 2nd seizure in less than two weeks they automatically did a CT scan. Everything came back normal.
But now we are in a new realm of medical concern because we need to figure out why Lily is having seizures if they are not being caused by a fever. She will be seeing a neurologist this week and getting a complete MRI of her brain next week that will be looking for any abnormalities that could be triggering the seizures. Aside from epilepsy there are a whole host of medical conditions that can trigger seizures so we may be playing medical detective for a while. In the mean time, until we find out exactly what is going on, the doctors have put her on a low dose anti seizure med to make sure she doesn't have any more seizures.
Mike and I have a very, very strong hunch that Lily is experiencing what is called a Psychogenic Non-epileptic Seizure (PNES). It is basically a stress induced seizure. Even before Lily had her first seizure we had read a lot about internationally adopted children, who have come from hard beginnings, who have experienced these type of seizures. Many times they will be misdiagnosed with epilepsy, but eventually the doctors figure out there is nothing wrong with the brains of these children, it is the emotional and psychological trauma that is manifesting itself in the form of a seizure. It is especially common in children who do not have effective communication skills, and more common in girls than in boys. We will go through all of the testing just to make double sure, though.
To say that our little family has been stressed out for the past couple of months is certainly an understatement. We have done a lot of traveling, Lily's therapies have changed from in home to at facility, Lily has been experiencing tremendous physical and developmental growth, my health issues, Mike's new business, my busy work schedule, and it just goes on and on. It is amazing that we all haven't been having seizures!
Thank you all so much for your prayers and support. It means so much to us to know that we are not alone and that so many of you care so deeply.
Anyway - that is the gist of what is going on with us at the moment. I think you will all understand that we are taking some major steps back from a lot of our commitments in the coming weeks and just focusing on one another.

Diva Alert

This girl has been practicing her diva! Does she look like she means business or what?! As you can see she has made a full and complete recovery from her little virus last week. In fact, I think she has come back supercharged!

Feeling Better

Well we were supposed to be leaving for Minnesota this morning but things just did not work out this time around. With Lily's rough weekend and my impending surgery we just decided that a 9 hour car ride was not in our best interest at the moment. Lily's fever seems to have subsided and she finally got a good night's sleep last night (hopefully that means mom and dad can get a good night's sleep tonight).
I heard from my sister that Lily's cousins got to go on pony rides at the fair this past weekend so I thought I would share a picture of Lily on her "pony ride" while we were camping. I am thinking she might have been a little more enthusiastic about the real deal - lol! The wooden pony just isn't cutting it for her.

Wow, what a day it is has been.

Hmmmmm... where to start. Let's start with the good. Enjoy the video posted. It is from a few days ago at one of Lily-an therapy sessions. She has amazed quite a few people lately especially the therapists she sees. They are amazed at times I think. Lily has been getting stronger by the day. Her muscles are developing and you can see them now when she uses them. You can see her determination in the video. We are seeing this everyday with what she is doing. She is grabbing onto things and holding on. Her grip is very strong. She is bringing both hands together and grabbing things. This is a huge developmental stage for her. Means that both sides of the brain are communicating with each other. She is getting more vocal with situations around her. She is more attentive to what is going on around her and turning her head to see what is going on. You say her name and she looks at you. It just keeps getting better. She so bad wants to move and determined to do it. She isn't content with sitting on the floor now. She doesn't like crawling all that much. We go over to her or come near her and she reaches for us. She wants to stand up. So, we position her legs on the floor and have her stand. She stands from sitting now. She comes up on her knees from the floor. She initiates all of it. We are here to guide and help her but let her do it all. She wants to do this at home as well as at therapy. It is getting really interesting really fast. She is growing up right before us now. What a change in a short period of time. I can't wait to see what happens over the next 6 months. We are both excited for this and amazed at the change before our eyes. We will keep posting all the good stuff so everyone can keep up. Words really can't express everything. There are changes coming our direction. We have been getting this feeling for the past few months and Jennifer and I have been talking about it more and more now. Especially after today - will explain later. We have both been realizing the importance of our family, the 3 of us and what our responsibility is as parents to Lily-an. We both feel God is working in our lives and He is giving us a feeling of change coming. We trust in this feeling because it has happened before, how do you think we ended up here in Wisconsin, along with other things. I know not all of you are believers so you may not understand what I am saying. But, it is where Jennifer and I are at in our faith journey. We try our best to put our trust in the Lord for guidance through life that we are living out his will for us. We do make mistakes, quite often, but we always try to listen to he is trying to say to us. We do this through prayer, fellowship, reading the bible and more. The way things are looking is Jennifer will be scaling back considerably on her work in the sewing world. She has worked extremely hard the last 8 years and now things are about to change. My business is doing ok and the way things are going, I am picking up more work. We have felt that our family has been a little out of sync since we adopted Lily-an and more so lately. With the fact the Jennifer is facing surgery in a few weeks is the perfect opportunity to re-evaluate things and start a new direction. She is starting to not take on work. Only what she wants to and if time allows. Her main responsibility will be to take care of Lily-an now with sometime spent in the shop. Not the other way around like it has been. These are important times for Lily-an and her development. We feel it is necessary to help her progress and develop as much as possible. We need to do our part now more than ever. We can't the way we are doing things. Things have to change. I will pick up the hole that will be left by Jennifer. We both know it will not be easy but with God guiding us, we can do. We know He will provide all that we need. We may not get rich doing it but we will have our family and it will be a strong family which is what is so needed now in these times we live. Our emphasis will be on family and the time we spend together. I will work at my shop restoring and repairing cars as much as I can. I have work through the end of the year for sure and with smaller side projects coming in, I will keep busy. We ask that you keep us in your prayers as we adjust to this change and that God provides exactly what we need to do it. This is a huge adjustment for us but we know it is the right thing to do. Now, a little note about today. Our morning started at 4am with Lily waking up crying. This has happened before but not for a while. Jennifer got up, gave her some juice and Lily didn't want to go back to sleep. Jennifer brought her to bed with us so she could at least rest with her. I noticed Lily was extremely warm, almost hot. Confusing since we have a/c and it is on. Soon, Jennifer says she is taking Lily-an on an early morning walk and off she goes. Things are good, right. She returns and soon wakes me up about 7:30am, something isn't right. Lily-an is having a seizure. She was warm. Thank goodness we are emt's and have some training to understand what is going on. Off to the ER by ambulance. Her temp was 103. Kind of low for febrile seizure. After a few minor tests and some Tylenol, her temp comes down to under 100 and she perks up sits up and is starting to look like herself. She is very tired and exhausted which is completely normal after this. Oh, she is also a little ticked off. Things look good, tests come back negative and the only thing the Dr can come up with is a virus spiked her fever and caused it. Makes sense as talk about it and we leave feeling comfortable with what he said. We have monitor her temp now. If it is a virus, there is nothing really that can be done, just need to run its course and give her ibuprofen and tylenol to keep the fever at bay. Normal thing to do. We called the on call pediatrician at Lily-ans dr's clinic and he agreed with what the er doc said. Just what kind of virus is it is the question. The ped. Dr. is thinking foot/mouth virus. It isn't flu season here and what happened is characteristic of foot/mouth virus. And this makes even more sense because Lily-an is in the stage of putting her mouth on everything she can and putting everything to her mouth she can. Like parents haven't seen their children do that. The seizure/fever is usually the first signs to show up with this virus. The physical signs (blister, red spots) show up a few days later. This afternoon, Lily-an was her normal self and we are doing great. Her temp is great, she is eating like she always does, bathroom as normal and is very playful and active like normal. We are going to monitor her temp over night and give her meds if we have to. That is about all we can do within our ability. We are praying God will heal her, correct her body, take care of the virus, no more seizures and that he gives us wisdom, peace and understanding through this process. Today was a day that we couldn't fix anything. Lily-an was in the palm of God's hand and he was taking care of her. We could only pray. Talk about helpless and useless. This is one thing, we couldn't fix or do anything about. Making a few decisions was about it. We believe God answered our prayers but we are not giving up, we are going keep praying for Lily-ans health(maybe our sanity also). Today really made us look hard at our situation here and it confirms more and more that we are on the right track. Most people would think we are out of our minds, yeah, maybe we are but with God, it will all be ok. We believe that, we have faith in that and it will. Pray for Lily-an that she is healed. No parent wants to be in our shoes and today I stood in someone elses. I have a greater understanding for the little patients I see and their parents. I can relate now where I could never before. Now I know. What a lesson today was. My heart breaks over what happened today. I was helpless........but I knew Lily-an was in good hands.

Little Rocky!

If I were computer savvy enough I would edit the theme song from Rocky into this video, but I'm not so you are just going to have to imagine it:-)

Lily-an went crazy in therapy yesterday! We have started working on moving from sitting to standing the past couple of weeks because she has seemed interested. Well no question now, that is all she wants to do. Her therapy session in 45 minutes long and that is all she did the entire time - sit, stand, sit, stand. And not just easy, tentative, beginner sitting and standing! She was using her arms to pull herself up (it took a few tries to get the message to her glutes to help out, but they got it) and then we moved her to the mini trampoline where she practiced more pulling up and the therapist helped her stand upright and bounce, and bounce, and bounce!

Of course she got to finish the session on the swing - her favorite. She has that figured out:-) She knows the therapist won't move the swing if she isn't holding on with both hands (doing anything using both hands has been difficult for her) but she put both hands on the ropes immediately and was very insistent that the swing move, even turning to swat at Kelly to make the swing move.

She was so excited and proud of herself! She was absolutely beaming through her exhaustion - and she really was exhausted by the time we got done. She had a quick snack between PT and speech but she still only made it partway through speech before she needed more food. And then she zonked out hard on the way home.

I am so proud of her and it is so amazing to see the desire and determination just steam rolling out of her. This little girl is going for the knockout!

Awakening the Beast

The dark haired little girl sat perfectly still in her chair as a small river of golden nectar trickled down her chin. Still silently, her large black eyes got even larger and blacker as she sunk her teeth in the juicy flesh of the innocent peach. Warm on the outside and cold on the inside from being freshly blanched and skinned, explosions of new, intense, and wild flavors burst forth with every bite.

There was no turning back.

Transformed from a small, quiet, docile girl into a peach crazed, wild eyed beast! Screeching, clawing, flailing, anything to bring the delicious peach back with in her reach. Formerly nearly mute, the child let loose a cacophony of growling, gawing, mmmming, and yeahhhing.

Now she rests in her lair, gorged and full of juicy peach flesh, mmmming herself into an afternoon reprieve. Every once in a while she will lick her lips and growl.

Run little peaches, run while there is still time! I know a soft little pastry shell where you can hide;-)

Update

Got the results of my biopsy today. Not good and not bad. The cells they were able to remove showed the presence of a suspicious lesion. They cannot confirm whether or not it is cancer, not enough of the right type of cells were harvested. So that means surgery to remove this nodule at the very least. I haven't talked to the surgeon or my doctor yet(she is on vacation until Tuesday) but from what the nurse was able to explain to me they will remove the nodule and, while I am still under anesthesia, biopsy the whole nodule to determine if it is cancerous. If it is cancerous they will then remove the entire thyroid. If not, I will be good to go.

I am sure I will find out more after I talk with my doctor and surgeon. I am just glad (and relieved) to have at least some useful information. Now I can start doing useful things like getting my schedule in order to prepare for surgery (now there's something to worry about!!). I will try to get the surgery done as soon as possible because then I am that much closer to recovery.

On a funnier note, I kind of felt bad for the nurse when she called me back (I had called and she had originally told me I wouldn't be able to get my test results until the dr. came back on Tuesday). Just the fact that she was calling me back so quickly gave it away for me - lol. Poor lady was more upset trying to break it to me that I was going to need surgery and that I might have cancer than I was. I am sure she is used to dealing with slightly more emotional and hysterical women. She kept asking me if I was o.k. I probably sounded abnormally upbeat to her, but I was! I was glad not to have to wait until next week and the news wasn't terrible. I almost feel like I need to call her back and make sure she's o.k. - lol!

That's all for now, folks!

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.