Sunday, January 9, 2011

Sunday Morning Blues


Little one is still not doing well.  Thus, we are all feeling like we have gone 10 rounds this morning.  We think that he thinks that if he cries enough, we will take him back to that nasty doctor to get the casts removed.  Oh, how I dread Friday when we do take him back to get the casts removed, only to have the 2nd set applied.  I just don't even want to be in the room. 

For those who have asked - Yes, we are giving him over-the-counter drugs for pain.  He cries even with the drugs.  We are also giving him drugs for itching.  He cries anyway.  He is not allowing himself to sleep. Each time he drifts off, he startles himself awake with fighting, kicking, rocking - anything to ward off sleep.  Two sleepless nights so far.  Aaron does NOT take naps.  Not once since he has been home with us.   I think 6 years of being forced to lie in bed for 2-3 hours every afternoon, whether he was tired or not, was quite enough for him.  We think we are going to invest in some sort of mild sleep aid for tonight - either for him or for us.  Yikes!

We have set up a TV right in his little play area, and he has a nice little couch where he can lie and watch videos if he wants, which is a privilege because we usually limit videos fairly strictly. We're treating the casts like an illness. TV soothes him a little, but he is so exhausted and miserable that they only take the edge off.  He is holding onto his Pooh bear for dear life.  Thankfully Pooh is no worse for the wear.  We decided that Brown Bear needed to have casts on his legs like Aaron.  Poor Brown Bear. 




The reason Aaron's casts go so high on his legs is so that they can not only correct the angle of  his ankles, but also twist and mold his footbones into a more natural position. The insides of his feet are turned inward and down from birth, and we need to correct the whole position of his foot. The longer cast provides more torsion for making these corrections. An added benefit of casting above his knees is that we can also increase the range of motion in his knees, which has been limited from birth.

I just keep whispering to myself that this too will pass.  It is short-term agony for long-term gain.  He is loved.  He is not alone.  He has a family.  All will be well in the end.

28 comments:

  1. Julia,
    When my son was six he broke his leg and he was in a cast similar to Aaron's. I remember the itchiness,it drove him crazy! Our doctor told us to use the hairdryer to aim a little hot air at the itchy spot and it would make it stop. I thought it sounded crazy but we gave it a try and it worked like a charm. He was much happier after that.
    You and Aaron are in our prayers!
    Becky

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  2. Hang in there mom- the end will justify all of the current agony for all of you. I am praying he will adjust quickly.

    Kayla

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  3. Oh Julia, I'm so sorry that it's being rough . . . I am with you on Friday--I just about cry thinking about it. In the night when I was up with my children who are not feeling well, you were heavy on my mind. One thing kept coming to me . . . are there ANY books written in a simple format for Aaron that could help explain to him what is going on?? If not, put it on your "to-do" in a few years list! Because esp. if a lot of the kids going through this are adopted kids with a limited grasp of English . . . a simple book with photos and simple words could be so comforting. I know you could do it--your way with words and your photos are both talents that could be amazing with this. I have OFTEN wished for something like that for Turner's Syndrome (which our Dd has) and there is NOTHING that anyone knows about. Believe me I have dug deep and long and asked medical professionals etc. even. If you want to move on from arthogyposis (sure I didn't spell it right) to Turner's Syndrome, please let me know!

    Home from church with sick ones at this house, and the song, "I Need Thee Every Hour" is playing . . . let the words sooth and comfort your soul and heart right now. . . Hugs!

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  4. I would try to distract him while he is being casted. Maybe watching a movie/show on a cell phone or laptop while being casted. Worked very well for our son.

    His hypervigilance in trying not to fall asleep sounds like he may be experiencing trauma from medical procedures in Ukraine. If he does not improve significantly by Friday I would discuss prescription pain meds with the Doctor or even possibly a low dose of anxiety meds. Many children are on anxiety meds when going through medical procedures.

    We've been through casting with two children and it will get better. You and he will get better at coping with it. I know he is in a state of exhaustion but I agree with try to keep the routine the same as before. Distraction and not focusing on the casts works well with children.

    Best wishes,
    Carol

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  5. I can imagine a little bit what it must be like to watch your boy suffer, especially when he doesn't fully understand what's going on. So sorry for ALL of you in this trial... but yes, I trust it will be well. It is for good. God is in it, doing His gracious work.

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  6. Praying for you Aaron and your family. It makes us wonder how Madeline will do knowing her condition. You have a wonderful family that LOVES YOU SO MUCH. God is smiling down on you knowing that :)Hope Brown Bear feels better soon too.
    Carolyn, Madeline's Mama ( soon)

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  7. Keep hanging in there. I know it feels like it hurts them more than it does us. The little boy I nannied was in a body cast (down both legs and mid-way up his chest) for over a month. He was MR and non-verbal and he couldn't understand WHY this was happening. I spent many, many nights sitting by his bed holding his hand and listening to him cry. After the cast came off there were more hard weeks, but by summer he was happy and laughing and wonderful again. I'll be thinking about you guys.

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  8. Poor little guy! Does he have any of the Pooh dvds? We would love to send him one if he doesn't have any. We're praying for him!

    The Ristow 6

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  9. when our daughter had surgery on her foot to have it straightend when she was unconcious we had the dr cast her fav dolls foot as well..when she woke up she wasnt happy but saw dollys leg casted as well and we doted on dolly just the same and dolly had her cast removed the same time as isabelle.Worked like a charm,,maybe the dr can cast poohs legs??and mama can dote on pooh as well??

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  10. Does Aaron know why he is in casts? Has anyone been able to translate to him?

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  11. Praying for you and Aaron. It reminds me of how I felt watching Andreas grieve. Going back to his orphanage was so scary because I knew he would want to stay. I felt so awful to have to tear him away again. Have faith that what you are doing is in his best interest. It must be hard for our Heavenly Father to watch us hurting when can't understand why or see the outcome. Praying for the comfort only He can bring.

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  12. Julia:
    I concur with the poster above who recommended pursuing a prescription sleep aid/anti-anxiety med if Aaron won't let himself sleep. An exhausted/fretful 6 year old needs his mama to be his rock and you can't be that for him if he (and you) do not sleep. Are you able to make him understand ahead of time that he is going to have several casts so he will not get his hopes dashed when the cast is removed on Friday and another reapplied? Keep front and center that what you are doing now, while difficult, will allow him to lead a more normal, and safer, life later. Prayers for comfort and rest for all of you!

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  13. Oh Julia- I know that ache well- when your brain knows you are doing what is best for your child yet your heart hurts so deeply watching them hurt. And mine aren't 6 yet.
    Praying.
    Ellie will be in a body cast soon for 3 mts- your post today spoke right to me.
    Have you tried hair dryer on low for itching?
    Praying for all of you. Katie

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  14. Julia,
    I am praying for Aaron and I understand your mommy heart for him! I pray that you can feel Gods presence and soon the "calm" will be noticed.
    Thank you for sharing your story with us. It has changed and encouraged many people to think a bit deeper and to press in to the Lord to see what his will for adoption is for their family.
    You have a beautiful family!
    Love,
    Melody Wright

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  15. Praying for all of you. I follow a handful of adoption blogs and if you are going back to Philly on Friday, I know of another family who will be there. Their blog is
    http://waitingchild.blogspot.com/

    Both of your blogs are two of my favorites!

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  16. So sorry Aaron is taking it so rough. I pray that he will adjust and be able to be happy even in this difficult time. Praying for sleep for all of you and a better day tomorrow! God Bless - Pam K CA

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  17. You could try some Benadryl for both him and you! It is safe and it really helps!

    I pray that everyday gets better.

    Catherine

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  18. I too would recommend asking the doc for a script for sleep and or anxiety. Nothing will get any better without sleep, and a Momma without sleep can't do everything that she needs to when her men need extra attention. Poor little guy, it must be miserable, but to not understand how this is better for the long run. It is so hard to be a parent when you have to do what's best for your child, and you feel bad about it, BTDT and sending you TONS of love to help you get through.

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  19. Continuing to pray for healing! In my prayers!

    Sarah

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  20. Right on with the recommendations for perscription pain/anxiety meds. It might take the edge off and help with the lack of sleep. We are praying for your family !

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  21. Oh this post and the one below just breaks my heart to think of what you all are going through. I can only imagine how your mother's heart is torn and aching for Aaron and what he is going through, but knowing it is the right thing for him. I'm sure its been difficult with the language barrier to even explain to Aaron what is happening and why and how this will benefit him in the long run. How long will both sets of casts be on him? Praying that the days will get easier and that he'll find some peace to rest and sleep at night (and you too!)

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  22. Poor baby. :( Our son had to have a body cast with bars between for months.... It was hard, but we made it through....How is Aaron's English? Is he understanding what is going on?

    When Erika had her feet amputated, (4 months home)
    she had to just sit and wait until healing took place to get new legs and learn how to walk. It was a LONG process, but so worth it!

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  23. Poor Little Angel! I've been following your blog since you got home with him, and how sad it is to see his little eyes drooping. However, now he has the love of a family, the comfort of a mom and dad and two adoring siblings. He will probably barely remember this in the years to come, but he WILL remember the love and care he was given during this time as he learns to be comforted and understands the consistency of your presence and your love. Ultimately, he will begin to understand the unfailing love of his Heavenly Father through all of this, and that will be the greatest reward!

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  24. praying for you all - esp. Aaron

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  25. wrapping brown bear's legs was a stroke of genius

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  26. My heart aches for your poor little guy! My 13 year old brother has cerebral palsy, and just got his tendons cut in November, then was put in a full leg cast. He is constantly complaining about it, and he is older than your Aaron and understands what is going on. It hasn't made it any easier though! I am going to show him Aaron's story when he gets home from school. I am keeping your sweet guy in my prayers!

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  27. I pray the grace of God and the sweet angels surround Aaron in these days. I know we will be going down that road soon with Maxim... it's what he needs but our mama hearts.. OH JESUS please send your healing! Love and HUGS to all of your precious family!

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Loving words from kind people make our hearts glad!

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