3 Months Home

April 19th was the day Willow became an Osowski and today July 19th she can spell it! She understands that we are all Osowskis. Last night she said, "in China me Huixian; in America Willow. How come?" I asked if she'd like us to call her Huixian or Xian and she said No, me Willow.

Willow's hair is getting longer

Her legs are healing and she is not in constant pain. Most of her pain seems to come from sitting for too long in one position or going outside for too long. We have bathed her 3 times since surgery and she is still very anxious about taking the braces off. (Maybe they kept her in casts for a long time?) I've told her "we'll see" so she doesn't worry about the day. I still need to do my homework on what she can do when they do come off.  Her foot positioning has been better but not as good as I'd like. I called the ortho we plan to use in Cincinnati for additional options for splitting her feet. His response was "some kids do fine and others don't (regarding feet that pronate) and he said we will discuss at our scheduled appt in 3 weeks.  I am not impressed: what happens to the kids who don't do fine? 

     Willow's English is getting better every day. She even made us all laugh the other day. She was talking about shanghai and said "my frien" (friend) to which Evan responded "you have a muffin in Shanghai?" thinking that is what she said and she cracked up and said "not muffin, my frien." 

    She is a very loving child and gives me hundreds of kisses a day almost to the point of annoyance, not because I don't appreciate the love but usually because I am trying to carry her to toilet or out to the car. She is interested in everything but not focused on anything for more than a few minutes. I usually have to put her on the couch where she can't constantly move about and give her a few things to look at or play with and leave. She then seems to allow herself time to concentrate. Every day is something new, something learned, something understood.  To God be the glory.

P.S. today she seemed to have nerve pain in her feet which though we tried many remedies we could not make her comfortable. I told her I would pray and I did. After about 5 minutes, she said God no take her pain away. She began to get upset and said "I not know Jesus."  My heart fell hearing the despair in her voice and me with out the language to tell her. I of course told her in English that she could have Jesus and He was with us but I'm not sure she understood. Praying the peace of Christ to rule in her heart.

2 weeks post op

These last few days (or rather nights) have been very difficult. After the first 8 or 9 days the pain seemed managed and she didn't want the pain meds. I had backed off the narcotics a few days earlier and she was only taking ibuprophen and tylenol. I should have kept on. I learned that during the day, pain is more manageable due to the activity and distractions.  After getting her to sleep, which usually took @ hour, she would wake up just as we were going to bed and then toss and turn fitfully for 2 or more hours. I'm not sure how she was functioning during the day; I was barely making it.
   But worse than little sleep is the feeling like I might not be doing the medical part correctly.  We are still trying to build trust with her and not only allowing pain in her life but at times, needing to cause it erodes this trust. Recently, it has become evident that her feet are pronating to the point where they are not lining up with her knees. She has until the last few days complained of pain in her feet and wouldn't let us near them. We have encouraged her to try and straighten her feet and at times it seemed like she could but last night I felt like we needed some guidance. I contacted some OI moms and was told by one it was ok and by another it needed immediate intervention.  What this meant is that  I would have to intentionally cause pain to my daughter. I called a friend who is in the medical field and we splinted the feet after giving Valium to calm her and reduce pain. In the last few days, I have gotten more sleep but my days are filled with lifting, transferring, toileting, cleaning. It is completely exhausting yet I wouldn't change it. I know God is working here and I pray that my eyes are open enough to witness what He is doing.
    With each adoption, God has shown me a part of his heart. With this one, I knew I would learn about suffering. I remember being with my mom last summer in her last weeks and discussing why she was going through pain: Did God still love her?  Did He still hear her prayers? Suffering will do this to you: it will make you doubt things you know to be true. One of the things I told her was that sometimes a parent needs to have a child go through pain in order to bring healing. It is a mystery but at that time last year I knew I was looking forward to my own life with my future daughter. I didn't know a lot about O.I. but had been told by two people that her legs would need to be rodded to strengthen them. This child that we worked so diligently to make ours would by our own decision go through pain. Of course we could see that she was already in pain and her body was broken. Her suffering would bring her to a better place. Suffering is a part of life - everyone acknowledges this - but what most don't want to see is that it is often a good thing. Not good as in pleasant, but good as in part of a plan to bring us to perfection, to have us live the life we were intended to live.
    God is good all the time; not in spite of our pain but through our pain.

Bandages are off

I'm not sure who was more nervous about taking off Willow's bandages: her or me. One moment she seemed ready but the closer we got to bath time the more hesitant she became. We had gone out (our 1st since arriving home 6 days ago) and arrived home much later than intended due to a traffic jam. I didn't want to wait another day because I knew it was looming over her. With the advice of other OI moms I put her in tub with the brace and took it off there before adding water. She is very careful of her left shin which seemed to have the most padding, but with six incision sites on each leg, we had other choices.
   This girl continues to amaze me with her courage, resilience and humor. She was trying so hard to stay cheerful while doing something she was fearful of. I told her we would go slow and could stay in tub as long as we needed to. We played, used shaving cream and listened to Disney tunes (thank you Marissa) while bravely peeling back one bandage after another. She wanted to save the lower leg for tomorrow but I told her they would be wet and stinky. Finally after more than an hour, the last bloody bandage was removed and the water let out. She was dried off, brace put back on and she said, "no tung." meaning no pain. It may seem like a small thing but for a child who may not ever have had anyone constant to rely on, it was important that she knew without a doubt that I would never intentionally cause her pain.

The medical side

Anyone who knows me well knows I am not a medical person. While I don't faint at the site of blood, I have fainted (only once) seeing my child in pain. I came close with Willow in her surgical recovery. She was waking up and vomiting when the nurses told me her bed was broke and they'd have to move her. The thought of her being moved after having 4 major bones cut made me light-headed.
This is a new road I am walking. There is so much I don't know: such as how we will lift her with this big brace? How will we clean her for the next 4 weeks? What will she need when the lag braces come off? I am just feeling my way through this. I don't think she knows this. She trusts me to do the best thing. I know this because she will say "mommy carry; no avery carry or mommy push; no boys push, they no gentle."
   I had thought shed be coming home with 1 leg splint and she would have some mobility but with the double leg brace she is more dependant on me. Whereas she had some independence with toileting before she is now in diapers. I think we could manage the toilet with a few adjustments but she is fearful of the toilet causing pain so we will use diapers a little while longer.
  I am very thankful that She has not been in pain for the most part. She came home with meds but no plan for reducing so I am trying to figure out (with limited English) what she needs to be comfortable but not overusing any med. After talking with other OI moms I ditched the valium and began cutting back on the hydrocodone. Her only complaint is the bottom of her left foot. This seems preposterous considering she had 4 major bones cut and spliced; however a doctor who stated she has learned much from kids with OI stated she has observed that they have learned to ignore bone pain and are more sensitive to skin pain. Maybe the brains way of coping.
  In other news, she prayed for the 1st time tonight (I think I heard God smile) and she gave me my second real " I love you" not the love ya phrase we usually hear her repeat. This was coupled with a long hug and her telling me "you're nice."  I put that treasure in my memory bank for later.

Recooperating

As most of you know Willow was discharged from Omaha's children's hospital on Friday; however, it wasn't as smooth as I'd hoped. Her hemoglobin was pretty low that morning so a transfusion was ordered.  She ate a little but just had not gotten her appetite back. I had brought her wheelchair and car seat up to the room to measure whether or not she would fit with the brace. The width of her brace with waist support was 16": too big for both. We had been told that PT would help us find something that would work for us but PT said they had nothing that big and we'd have to just look around ourselves. All you moms who have ever spent time with a sick child in a hospital know how little time you are able to sleep. I really had felt pretty good but I think the enormity of the task ahead of me (getting this child in fragile condition in the car and tolerating a 12 hour car ride) must have been weighing on me. When the case manager came in at my request I got emotional (I hate that.) I had told PT if she could find something, fine. If not, we'd use the car's seat. This wasn't optimal for a fragile child but we were going to get home. I had hoped to discharge by 3pm but PT thought they found a seat (too small) and then ended up finding a New one made for children with body casts. First we had to try her in it (she wasn't happy with me) then we took it to car. The seat Sat up @ 8 inches which required buying 4 pillows to prop her legs up. We finally got her in the car at 5 drove the half mile to hotel.
  After getting meds I thought we were good and then she had a bowel movement which was loose. How to clean a child's bottom when she can't move legs and can only lift her bum a half inch? It was messy and neither of us were at our best but we got it changed.  I really could have used a good night sleep but I suddenly realized I would have to wake up every 2 hours to give her meds.
  We left Omaha at 8:15am and made it 3.5 hrs before we ditched the car seat. It caused her pain and restricted any movement in her upper body. Once we switched to a regular seat with pillows she actually slept. 12 hours later and we were home! It was actually done. Thanks be to God Almighty.