I thought we were done with trips to CHOP for a few weeks, but on Wednesday, I received a call from Children’s Hospital requesting that I make an appointment with neurosurgery.
I called neurosurgery, and was given an appointment for today.
It turns out that Evangeline will be having surgery in two weeks to remove the bone spur that pierces her spinal cord.
Then she will have a second surgery, probably in the summer, when a veptr will be used to stabilize her spine.
The bone spur needs to be removed because a big growth spurt or pressure placed on the cord from the veptr surgery could cause the spur to sever her spinal cord resulting in paralysis. Even though there are risks with the surgery, it just isn’t safe to leave the spur.
The veptr surgery is necessary because she has a 50* curve, and her spine has already begun to fall. It will continue to fall over time and further compromise her nerves and vital organs, specifically her lungs and heart.
We came home and drew a few pictures and explained the plan to Evangeline. She is taking it all very well, but she did say, “Mommy, I think so, I have a lot of surgeries. It hurts. Why?”
We really would appreciate your prayers for Evangeline and Eliza, and for our family as we move into this next phase of major surgery.
Evangeline has had a lot to adjust to. Her feet are nice and straight in her braces, but she cannot walk at all without them. She cannot even stand in the shower. The surgery had to be done, but she has lost a lot, and it’s tough for her to accept it and tough for us to watch.
Eliza cried for an hour when she heard I would have to stay at the hospital for a few nights. She does not want me to leave her. She has bonded so intensely with me and never wants me to leave her side.
Our biological children seem to be doing well with it all, but the girls do demand a lot of attention from me. I try to balance everything, but there is only so much I can do because the girls do constantly vie for my attention.
I know they finally have a mommy after years of waiting, and I completely understand that this is an expected stage.
They are precious and sweet and so very loved.
We covet your prayers, and are ever so thankful for God’s presence here with us as we walk this healing path with our girls.
Blessings,
I will be praying for Evangeline and your family with her upcoming surgery. This is the surgery that Emily had in October. It can be a super long procedure to chip out the bone. Emily’s took over 11 hrs. She came out of the surgery with better sensation in her feet and less bladder troubles. Before the surgery she tripped a lot and couldn’t walk in flip flops. Please email if you would like more details on the recovery , etc.
Praying for peace as you guys process this news and next surgery that Evangeline’s going to be facing, and so quickly. She’s not had an easy road – and, by extension, neither have the rest of you – but you all seem to be handling it with remarkable grace. Evangeline especially (not trying to downplay what you have said about some of what you’ve seen with the manipulation, etc.) – especially when it’s not just been the pain and physical side of it, but to some extent, I’m sure, the loss and not even necessarily understanding fully the ‘why’ behind all of it given she’s not been here ::that:: long yet and so between her age and language, having some degree of limitation in that regard.
It’s so evident that God truly handpicked your family for her to be with – and that He’s giving you strength and wisdom and grace to navigate this journey, even with the many unexpected twists and turns that you’ve encountered. Seeing that, too, just in how your other kids have responded – another demonstration of God’s grace in putting her in just the right family.
I’ll especially be praying for Eliza, that this would actually end up being a good thing. That the time you’ve invested in rocking her, trying to help her feel more secure, would really have taken root, and she’d see that all is well when you’re back again. And, as much as it’s hard when you’re in the hospital with Evangeline, and all of her needs and just the lack of real rest you ever are able to get in a hospital setting, I pray too that the time away from Eliza’s neediness and clinginess would give you a bit of respite.
I know it’s several hours from you (not sure how close you really are to CHOP – so I did the distance from CHOP) but perhaps at some point something like Jill’s House (under the umbrella of McLean Bible Church) would be a resource that might be helpful to you guys for Eliza (not sure if Evangeline would qualify? It used to be that any siblings could go certain weekends, then they changed parameters, and now I think it’s only for those with some degree of special need, physical or mental…though at the moment the website makes it sound like it must include some degree of mental disability, and I don’t recall if Evangeline has any?) In any case, it is an INCREDIBLE place and I know families that said that the respite it’s allowed their family has been incredible – and that their kids with special needs have just LOVED it! The kids of one family in particular, though not very verbal because of a degenerative dx, can’t WAIT to get to go to Jill’s House. Anyway, just was thinking it might be something that would be a blessing to allow you guys to reconnect with your other kids on a weekend when perhaps both E/E could go to Jill’s House. http://jillshouse.org/?page_id=2 And then maybe be worth the distance? They cater everything specifically for each child and their needs…it’s truly amazing – and with a great faith foundation.
Reading your post tonight made me think of it and that maybe it was something that’d be worth at least mentioning so you could file it away for sometime down the road. There is an upper age limit though, but I think it’s 18. Anyway, just a thought!
Mostly, just know you’re prayed for!
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Dear Diane,
It must be hard for you to divide your attention over all your children… You just don’t want to do any of them short… For your Chinese girls in their puberty the rationale is so different from the emotion… You can reassure Eliza that you need to be with Evangeline and that you will of course be back with her, but the thought of it alone makes Eliza feel so unsafe. And Evangeline can be told that the operations are necessary, but she’s been through so much, she knows it gonna hurt and maybe put her back right after surgery and she doesn’t want that. Poor girls. Give them love, love, love is really all that you can do about it. And you are already doing that big time!
Take care Diane, you will all get through this challenge and be even stronger bonded afterwards!
warm regards,
Claudia
I will pray for your family and those sweet girls. I’m so sorry she has to go through so much for such a young girl.
May GOD bless you and your family!
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What a tough season! We are definitely still praying for all of you – supernatural peace, patience, strength and healing.
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Diane
Hi,
Remember I work at CHOP and if I can be of any assistance for your family Please give me a call 267-246-6958
.Its Joe Cerone from LEARN
Our prayers are with your family
I’m torn as usual between being so sorry she has to go through all this, and so grateful that she is finally getting all the medical attention she has needed for so long. And all the love she has needed for so long, too. Prayers for you, her and also Eliza. G-d is holding you all in his hands (not that you need me to tell you that!).
Something to think about…perhaps Eliza could stay overnite at the hospital with you? After Evangeline is stable, but also while she’s medicated and sleeping more. You could spend some quality time with Eliza and be able to get in her “rocking” time. And, maybe the other girls could take turns staying, so they get some special Mama time. I know that most hospitals even encourage these stays, as it helps prevent the patient distracted from pain and lessens anxiety and depression.
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