"What lies behind us, and what lies before us are small matters
compared to what lies within us."
- Ralph Waldo Emerson

Thursday, January 12, 2012

Philly Trip: Part 2

So, you've heard all the good stuff about our trip, now here comes the tough part. I even dread writing about it.

After Victoria had millions of x-rays, I thought we would go back and meet with the doctor and have casts put on Victoria to help her legs bend. That was my plan.

I actually thought I had a plan! Ha!

Dr. van Bosse said casting her legs were the least of Victoria's problems. First, he wants to do a surgery that will fix the fact that both of her hips are out of joint. This involves something called a spica cast. The cast will begin at her chest and go all the way down around her feet. She would have to wear the casts for at least 6 weeks.
Here is a picture similar to what Victoria would have, except that her feet would be in casts too.


I think my brain kind of got fuzzy and numb at this point.


The surgery has to be done fairly soon, before she is four years old, otherwise it will be too late. She would be able to walk without this surgery, but she will probably have a lot of pain as she gets older. She will probably develop arthritis by around age 40 without the surgery. She could even end up confined to a wheelchair. But, it also might not happen.

I can't imagine my sweet baby in terrible pain and stuck in a wheelchair as she got older. Then again, I can't imagine my sweet baby in terrible pain now.

The orthopedic doctors I met with here in Atlanta said they didn't think hip surgeriey would really help Victoria, so I never really thought about it again. Of course, these are the same doctors that told me that "walking was never going to be Victoria's strong area". So perhaps I never should have given what they said much credence.

At least she will have her hands, that is, unless we do the other surgery the hand doctor wants to do at the same time.

Which brings me to the surgery she needs for her thumbs. Her thumbs are supinated, which means they kind of work more like an extra finger and it does limit her a bit. The doctors can break her thumbs somehow and do some skin grafts and make her thumbs more functional, which is great. The only risk is if they cut the growth plate on her thumb. Then she will have two year old thumbs for the rest of her life.

Yikes.

Of course, there is the risk of anesthesia.

She will also need a surgery on her feet since one of her bones, called the talus bone, is not in her foot correctly.

See how this talus bone is lined up with the other bones in the foot? Victoria's talus bone is basically vertical, pointing down, which puts alot of pressure on that bone. As she gets bigger, that is going to cause pain too.


The doctors also think she has distol arthrogryposis, which means she has a 50% chance to passing Arthrogryposis along to her own children. Just great.

Finally, she will still need her legs casted too, eventually. Which kind of doesn't seem like the big deal I thought it was.


I'm sure there is a lesson here that I am supposed to be learning, but oh, my poor baby!


Truthfully, I feel like running and hiding somewhere. Part of me wants to do nothing more, not take the risks of surgery and just deal with the "what if's" later. But, I can't, not even for a little while. Decisions need to be made and I have to figure out what is the best thing to do for Victoria.

I just hope and pray I make the right decision.

Because she is worth it.

26 comments:

  1. Oh sweet baby. We got the same or similar news about our son today. Sometimes it can be so overwhelming

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  2. Hugs my friend! Talk to people and ask lots of questions and the right decision for Victoria will become clear!

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  3. Oh dear. Poor sweet beautiful baby girl. She just looks soooooo amazing now!! I love that she has a chance to reach her potential. Praying for her and for your heart.

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  4. BIG HUGS! BTDT with 2 kiddos. It is WELL worth the surgery. She is tiny, so the spika cast won't be as difficult. My son had it done at 6 and Erika at 9.

    It was a hard few days, then everything calms down, and there is a lot of care to keep the cast dry.... other than that, it is not too big of a deal. Our son was in one for over 3 months. Then straight leg casts in a series after that....

    These decisions are hard, but if it will keep her out of pain in the future, (and help her to walk better) that would be a great thing.
    Deep breaths my friend!

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  5. Praying for peace and strength for you and your precious Victoria.

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  6. There is life after spica. Like the other poster said, she is tiny so it won't be too heavy and after a week or so you just get into a routine with it and she'll get used to it too. Just take it one procedure at a time :)

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  7. Poor thing. I think if I were her, I would want you to do as much as you could to benefit me later in life.
    This whole process will likely be harder on you than her, but she will thank you for it in the future! Hang in there - we are all cheering you on.

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  8. Catherine-

    I have prayers flying prayers out to you tonight. What a rough set of choices ahead of you. I think you are an awesome mother...just hang in there, breathe, and pray.

    Sending you strength,

    Jane

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  9. I don't have much more to add, I know the right decision will become clear to you. Can I tell you about my aunt? She was born with severe scoliosis in the 1940s, had many surgeries, a shoulder-to-hip cast, and was bedridden for years as a child. She was a bit older: grade school age. I believe the last surgery was in 7th grade. She looks back on it now as being physically uncomfortable (itchy), but doesn't remember surgery pain. What sticks out most for her, is the love of her mother (my grandmother). She was doted on and that is what she remembers the most.
    And I also want to share the story of my husband. He was born with a birth defect and had several surgeries throughout childhood. His mother abandoned him when he was three, and he grew up with a (mostly absent) alcoholic father. His memories of surgery and recovery involve being alone and scared in the hospital. One nurse sitting by his side, feeling bad that he had no visitors. This same nurse that sat with him when he was 4, happened to be his nurse again at a surgery 10 years later. She still had a picture that he had colored for her, hanging at her workstation. He remembers that. He remembers feeling alone, scared and sad. He remembers physical pain, too, but being afraid to tell his father that he was hurting. This led to more infections, more surgeries, more scarring. To this day, my husband can't walk into a hospital without turning gray.

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  10. She is so very worth--well, just everything. Seeing her lean on your shoulder is wonderful.

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  11. http://baseballsbutterfliesblessings.blogspot.com/ This blog has some really good info about spica care, her little girl has AMC too. She really recommends a cast cooler http://www.castcooler.com/spicacastlp.html as well.

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  12. My son will have his hip surgery with Dr. VB on Feb 2. I too dread the spica cast but I am hoping it won't be as bad and will become routine after a while.

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  13. Poor baby! I will be praying for you all as you make the decisions and as you go through this journey one step at a time.

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  14. I want you to look up to the top of your blog page and see that frail and timid little person withdrawn into herself .... now scroll down to the bottom and see this robust and loving child snuggled on your shoulder. Victoria is a fighter. She is resilient. She is awakened. She is loved. She will be ok despite these difficult decisions. She will have you and the rest of her family to love her and tend to her and demonstrate to her that she will be ok. Thinking of you while you make these decisions. Oh ... and on a lighter note ... look how happy that little boy appears in his spica cast ;) Also - Britax makes a car seat for kids in spica casts. Bet you could rent one if needed.

    Janet
    http://mylittlewarriorprincess.blogspot.com/

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  15. A baby at our church had this kind of cast. She was 18 months at the time. She wore it for about 8 weeks. She did great with it. The first couple days or so were hard cause of not being mobile but once she adjusted to it she was great. Victoria will be fine. I think it's harder on is than them. My son had to wear a cranial helmet and the first day I cried the whole way home worried I was doing the wrong thing.

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  16. I got your blog from a friend - your kids are beautiful! Anyway - I have been through the VDRO surgery twice with my daughter who has a brain injury. So we have doone the psica thing twice. She is also 4. I do understand they can do it beyond 4yo too, btw. Anyway - on my blog you can look at the tags for hips and see our journey with it - including tips and tricks! And of course, contact me anytime!

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  17. I'm pasting a link to a friends blog for you. Her four year old has been in spica casts twice. She said her email is accessible through it as well, if you ever want to ontact her. Good luck with the difficult decisions! http://colofisch.blogspot.com/

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  18. http://www.youtube.com/watch?v=jFERUGyV0S0

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  19. Praying for that sweet lovey and you!

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  20. I had several hip and leg surgeries as a child that required me to be in spica casts. My parents made the decision to have them all done to give me the best shot at not being in a wheelchair or in pain for as long as possible. Doctors projected I'd be wheelchair bound by 13, but I made it to 30 and I'm still not in pain at 38. I really don't remember any of it beyond getting a Cabbage Patch Kid one year because I was in Henrietta Egelston on Christmas. I am so grateful that they gave me the chair free years I did have because I packed a lot into them so now I don't have much self pity or a feeling that I'm missing out.

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  21. Aww, just love that photo of sweet Victoria snuggling against your shoulder. It's true what that other person said--look at the scared, withdrawn, sad child she was back then and look at her NOW! She's got the Lord and her family on her side--there is NO WAY she can fail! Even though I don't envy your decision, I know you will make the one with her best interests at heart. Kids ARE resilient--after all, look what she's survived so far? Time has a way of helping too. She may not even remember those casts but I bet her legs will ALWAYS yearn for a chance to walk! Hugs and prayers.

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