And of course there was another surprise, since that's just the way things go with newly adopted kids with little medical history and when I haven't got a ton of knowledge about their condition. I will be the first to admit that I know little about CP aside from the fact that I am ready to LOVE and willing to LEARN as much as is needed to help Wesley live a good, happy, healthy, and adventure-packed life! :) I didn't go in totally unprepared, but there's only so much that a book can teach you.
If you have CP or have a child with CP, you'll likely read this and say "yeah, could have told you that!" but I wasn't expecting this, and I'm just on the beginning side of any research, so I'd love to hear if there's "another side" to the story (reasons why not to head on how we're at this point planning to).
Today at the ortho the doctor said that since Wesley scissors so badly, his hips are (as we thought) completely dislocated. His adductors are also so tight that he recommended surgery to release those as well as to relocate both hips. We discussed the idea of leaving the hips dislocated, him saying that we have no idea if it's been 2 weeks, 2 months, 2 years, or even 5 or so years that they've been out. He said that often times if the hips have been out for years, there's very little success in putting them back in. In most cases, the femur has to be broken and the hip socket 'reformed' and it's a pretty lengthy and intricate surgery.
Then he said about 1/3 of patients with dislocated hips have some sort of pain associated with it during their lifetime. He suggested that 'most' of those cases are of kids with a higher cognitive ability, and from seeing Wesley interact with his environment (he was shredding the paper on the exam table), he guesses that Wesley is very aware of his body and surroundings and would be concerned that the hips would become a source of pain at some point.
And so... We made an appointment for 2 months from now to go back into the office, and decided I'd go home and talk it over with Michael. The ortho said he is comfortable with whatever decision we make and since he IS newly home, he's comfortable waiting as long as we want to in order to do the surgery. It's not like it's a new problem that wasn't there for the foreseeable past.
After talking it over, we know surgery would likely be scheduled for April/May if we call tomorrow and say "go". And that puts him in casts until (worst case) June. With the possibility of a need for another surgery in the fall. That seems (weather-timing wise) to be a good timeline... So we think we'll go ahead and do this now.
If you have any info on the surgery, questions we should ask before committing, knowledge of the length of time in the hospital after surgery, or any practical tips to dealing with the spica casts or post-op hip patients, I'd love for you to share your knowledge!
As I said, we weren't really expecting this appointment to be a "let's schedule a major surgery" visit, so we want to get our knowledge base together before committing to it right away.
Also, for bonding and attachment and such... I am comfortable doing the surgery in April/May. It is approximately the same timeline we did Emma's surgery in (home March 08, open heart surgery August 08) and though he's a VERY different kid, I have at least some bearing of how things may be at that point post-placement. That is also about the timeframe that we left James in (to go to Ukraine) and again, he was very much bonded and "a part of the family" at that time.
Any advice, questions I should ask, or other info I wouldn't think to even ask you for?? Thanks in advance for continuing to cover our family in prayer!!
**PS: Wesley is NOT in pain right now with his hips out. He also is not even irritated laying on his side and prefers to curl up (fetal) and lay on his side to sleep. We are thankful that it's not causing him pain right now! Also, fixing his hips will allow him to do weight-bearing which he cannot do with his hips out. Even if he doesn't ever walk, it's still much more healthy for him to be able to do weight bearing exercises and really... who KNOWS what he may be capable of once he has the opportunity!! :)
((HUGS)) Meredith I know what it feels like to go into an appointment thinking one thing and coming out with a total new ball game to think about.
ReplyDeleteI have no advice on the hips, but I do have about 10 weeks of a SPICA cast experience under my belt. If you decide to go that route and want to talk about anything let me know.
Decisions..Decisions...Decisions.. God has lead you in the right direction with all your beautiful children thus far, he will give you strength and wisdom to make the right decision here too!! Thoughts and prayers
valerie rieben has dealt with spica casts for Evan multiple times. my friend tracey schalk had surgery for her hip sockets as a child, do you know her? she might be a good resource. does Wesley also have arthrogryposis as you previously mentioned? it would be important to determine if its the amc or the cp causing the problems! both cause contractures but of different etiology. we are looking at osteotomies for sophie in may. (cutting the femur and reorienting the bone in the correct position rather than changing the hips.) good luck in your decisions. I love seeing Wesley in your photos looking like a REAL LITTLE BOY and not a baby. he is looking so beautiful and healthy.
ReplyDeleteIt IS one of the very common CP related problems. Here in the US kiddos are routinely x-rayed starting very young. Wesley probably has been dislocated for quite some time. I agree with your plan. Weight bearing even for a non-walking child is extremely important for all-around good health and like you said, who knows what he might be capable of given the chance.
ReplyDeleteWe had of course done a ton of research on CP too since Alina has CP, but we were also blindsided at Gillette CP center with 'well since she scissors her legs when you pick her up or put her down, we need to make sure her hips aren't dislocated and that she doesn't have hip dysplasia'
ReplyDeleteI think my jaw hit the ground! She'd been walking and moving around, bearing weight and wasn't in pain, so we didn't expect this. They did an x-ray and she doesn't show signs of dislocation or hip dysplasia now or ever, thank God, but wow I know that blindsided feeling!
And you are right, you never know what that little guy will do when he's given proper medical care. :)
Meredith, do you know Sue Mayer? She has Sam, with Ds. He has Perthes disease, which is a break down of hip sockets. He just had major surgery, and he's been in a similar casting situation. I don't know how relevant Sam's experience is to Wesley's, but it might be worth a visit to her blog to see.
ReplyDeletehttp://www.suemayer-specialneedsmom.blogspot.com/
I know there's many foster/adoptive parents who have dealt with spica casts on the message boards at fosterparents.com. If you register there, you can ask for info and you will get many "hits" as I've seen spica cast info on there quite a bit over the years.
ReplyDeleteI have no ideas about this but I know you all will make the best decision for him. So glad he is not in pain. I will keep you all in our prayers
ReplyDeleteHi. My child has spina bifida and has had both hips relocated, and in spica casts. We used pads (like Tena pads) tucked inside the cast, with a larger disposable nappy covering the pad and cast. It means only sponge baths for the period they are in the casts. Clothing - I made/used a size larger pants, which I opened down one leg, and either put in a zip or velcro, so that the pants could be pulled up over one leg, then fastened around the other leg. Car seats posed a problem - a booster type seat may work better than a typical car seat, as they are flatter near the base; a stroller with a pillow across the footplate supported both legs. It is awkward, but I'm sure you'll manage; we had the spica for longer - 8 weeks for one surgery, and 12 for another, and then she was in a removable splint (batchelor splint) for another two months. However, it will be so much better for Wesley; being able to weight bear will give him protection from future fractures, improve his circulation and digestion, and assist his ability to sit comfortably. God bless.
ReplyDeleteHi Meredith - I know nothing about spica casts but I do know that they do make waterproof arm/leg casts. My daughter broke her arm when she was 3 (in the summer, in Arizona) and we got a waterproof cast for her, I believe we had to pay out of pocket for it but being able to bathe her normally and not deal with the smell, etc was so worth it! I would definitely look into whether or not they can use the waterproof casting material for the spica cast. Good luck!
ReplyDeleteI know car seats are the last thing on your mind with this issue and I don't know where you would have the surgery, but Arnold Palmer would be your "go to" as to whether his car seat he has now would work, or whether he would need to use a special one made for hip spica cast kids. At one time they rented them out, so you didn't have to shell out hundreds of dollars for a seat you would only use for a few weeks. Let me know if you want to talk one on one and I can find out who to refer you to over there. It's been a while since I was certified in special needs seats, so I may be rusty on a few things, but can certainly get you some info or point you in the right direction.
ReplyDeleteI think u should go for it even though I have never had this surgery. (My cp is mild ) it will allow him not to have pain when he is older
ReplyDeleteHello...I have never commented but have been reading your blog for quite some time and I enjoy it thoroughly! For 7 years I was a nanny for a kid who had severe CP, he could not talk or interact with us and we were told he would never walk by himself. He was also blind. After working with him for years on walking, he learned to walk by himself which made everything SO much easier for us (not as much lifting and carrying). We had to steer him where he was going but he DID learn to walk by himself! I always tell people to never underestimate those with disabilities because I have seen some amazing things happen with the correct therapy. Walking was the one thing that made him happy. He could not communicate or see but he LOVED it. It will be interesting to see what Wesley is capable of. Praying for your sweet family!
ReplyDeleteHi Meredith, May I suggest getting a second opinion? My nephew, who is now 34, was born with his hips dislocated. My sister took him to local doctors who frankly did more harm than good. The finally ended up at the Scottish Rite Crippled Children's Hospital and were able to repair much of the damage, but not all. He walks with a very pronounced limp and I know is in a lot of pain on a regular basis. Make sure the doctor has significant experience with this type of thing. Praying for God's wisdom for you.
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