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MandyBeth
January 13th, 2014, 12:19 AM
As people may know, DH and I are adopting again. The young man has leg amputations which is how we met. And, thus he came into our home, bringing his sister with him.

Our beloved big girl has a few spinal issues, has had three surgeries already (shunt put in in native country, the whammy trio of Chiari decompression, freeing her spinal cord, shunt change in US by a very wonderful team, and another shunt change back to the prior as it's more comfortable to her), but she'll need at least two more - scoliosis is 80% likely, but we're going to try to avoid surgery. Fusion however is needed now.

She's in an Aspen cervical collar, the shunt #3 caught some instability that was grossly magnified by her improvement from second surgery when she gained more mobility. Thus, fusion is needed.

Which will be done first week of February. However, that leads to issues.

She's got mid back to waist length hair. She's already upset about the pin areas being shaved. I can't find cutting her hair short will benefit her mentally. The doctors agree it's not required, it's just drastically easier.

So, any hints on taking care of her hair? This will be 12-26 weeks, so while it may be a hassle, I figure we'll get used to anything. We're well set up for washing hair in the sink, but I figure keeping it detangled will be the bigger hassle. Plus, she'll be home or at doctor's only for a good majority of the recovery as she's too big for high back booster seats, but the HALO will make her top heavy. And there's no good way to tether the frame without a five point harness.

Kids here are busy sending all their doctors' great great grandchildren to Harvard.

kme81
January 13th, 2014, 01:09 AM
As for as styling goes:
Maybe cornrows? Or just a whole bunch of small braids? They would take time to put in, but depending on her hair type they could also last for quite a while.

MandyBeth
January 13th, 2014, 02:00 AM
Cornrows were tried before the most recent surgery, and she found even my loose braiding skills were pulling on her scalp. I suspect it's a lack of ever having braids in prior to adoption, but it's what it is.

She's in the very wurly to slightly curly camp. Microbraids I fear would lock up, and the removal and redo would be not good with the pins.

I do get why 90% of people go for short hair. But, we're not going that way. I figure even if we go to NWSO for the time - she's not going to be getting dirty or sweaty - it's not that bad. But, she's got the starting hormonal changes, so she's pretty oil prone.

However, if the hair becomes a detriment to the HALO, I'm cutting no matter what fits occur. Because hair grows back. Screw up the fusion, she's paralyzed from collarbone and down at least. And while there's some progress, it's still not great and it's a blankity blank to get even slightly better.

Latte Lady
January 13th, 2014, 02:05 AM
The only things I can think of are braids and dry shampoos to extend washing even further. You can also get a hair washing tray that allows a person to sit in a chair and have someone wash their hair. I saw a lady wash my Grandmother's hair in one when she was getting a home perm.

TiaKitty
January 13th, 2014, 04:52 AM
My curly girl can tolerate two braids, English style or twists, for a long period. They don't look great, but they're easy enough. Probably even around the HALO.

embee
January 13th, 2014, 05:26 AM
We're going to have to order a larger size crown for you, there's not enough room for all the stars as it is!

Is a topknot possible, or will scalp pain preclude this? Is frequent combing possible with her hair type? NWSO needs combing/brushin/preening and the scalp needs to be scritched.

MandyBeth
January 13th, 2014, 07:06 AM
I'm not sure on a topknot. I think it might work., but I'm also thinking the pins will be an issue.

Normally, her hair will frizz up with brushing. But, we aren't talking normal here. So as long as she's comfortable and the HALO can work, we're going for it. I also know we'll have a few weeks where it's whatever she can tolerate, we can fix the problems later.

Seems like braids are best. And if her hair is a mess, eh, it's only a few weeks and not that big of a deal. The doctors are used to the odd hair that's not washed, and that's it for public outings really.

Mustang Suzy
January 13th, 2014, 07:25 AM
MandyBeth - You might try a plastic expandable bun holder. I use one for my top knot and it holds comfortably all day. Here is a link for what it looks like.
http://www.mias-accessories.co.uk/en/dance-bun-nets-and-formers/760-black-plastic-bun-holder-decoration-expanding-pony-tail-holder-5023769094108.html

I think Scunci or Goody sells them in the USA. I bought the large version at Walmart. Good luck!

LauraLongLocks
January 13th, 2014, 12:01 PM
I would alternate a segmented ponytail into your list of potential styles. It's very quick, and if done with scrunchies, it doesn't pull at all.

spidermom
January 13th, 2014, 12:26 PM
2 french or dutch braids would be my choice

Anje
January 13th, 2014, 12:28 PM
I'm thinking you might do well keeping it sectioned and working with each chunk separately. A topknot for the hair above the level of the attachments, and pull back the parts below as necessary. Detangle and handle each section separately and try to keep the parts neat?

lapushka
January 13th, 2014, 01:16 PM
I think 2 French braids or simple English braids would be the most comfortable. Easy to detangle. Leave alone for a few days. Untangle, detangle, rebraid one side, then the other. Done!

torrilin
January 13th, 2014, 02:48 PM
I don't have any useful styling suggestions. But it sounds like she is used to long, loose hair and it helps her feel good about herself. If she's not used to updos, they can be uncomfortable. If her scalp is sensitive, it can be an issue even if she's doing her own hair. And she may not be real used to the idea of women wearing short hair, or she may think it's ugly. Find out what she thinks and what concerns her! As a kid I loathed twin braids because I thought they looked stupid, and I thought they always had to be done with bows and left down. And I didn't know about anything but plain English braids. Finding stuff she likes and is comfortable with should be doable, both for long hair styles and shorter hair.

I hope that her recovery is as pain free as possible.

GRU
January 13th, 2014, 06:46 PM
Since public appearances aren't an issue, I like the idea of dealing with each section individually and only washing when really needed (stinky/goopy, etc.). Brush a section with the Tangle Teezer, then braid / bun / caterpillar as desired. You can do different things on different days to give her some flexibility with style and comfort. And perhaps the sweet neighbor lady (Miss Pat?) could knit her an awesome cap that can go on around the HALO (with open slits and flaps and buttons, as needed)?

MandyBeth
January 13th, 2014, 07:43 PM
MandyBeth - You might try a plastic expandable bun holder. I use one for my top knot and it holds comfortably all day. Here is a link for what it looks like.
http://www.mias-accessories.co.uk/en/dance-bun-nets-and-formers/760-black-plastic-bun-holder-decoration-expanding-pony-tail-holder-5023769094108.html

I think Scunci or Goody sells them in the USA. I bought the large version at Walmart. Good luck!


I'm thinking you might do well keeping it sectioned and working with each chunk separately. A topknot for the hair above the level of the attachments, and pull back the parts below as necessary. Detangle and handle each section separately and try to keep the parts neat?

Topknot on top area sounds good, thanks! I'd have not thought of that, but I'm the frazzled mom. Then just maybe part from the pins, then braid each section on it's own. It'll look messy maybe, but oh well.


2 french or dutch braids would be my choice


I think 2 French braids or simple English braids would be the most comfortable. Easy to detangle. Leave alone for a few days. Untangle, detangle, rebraid one side, then the other. Done!

Yeah, a group of braids will probably be our main go to. Or segmented ponytails. Or whatever.


I don't have any useful styling suggestions. But it sounds like she is used to long, loose hair and it helps her feel good about herself. If she's not used to updos, they can be uncomfortable. If her scalp is sensitive, it can be an issue even if she's doing her own hair. And she may not be real used to the idea of women wearing short hair, or she may think it's ugly. Find out what she thinks and what concerns her! As a kid I loathed twin braids because I thought they looked stupid, and I thought they always had to be done with bows and left down. And I didn't know about anything but plain English braids. Finding stuff she likes and is comfortable with should be doable, both for long hair styles and shorter hair.

I hope that her recovery is as pain free as possible.

Hair relates to prior to her first adoption. And I'll leave it at that for her sake. Honestly, if she's in this get up for 6+ months, I can't see how shorter hair will be helpful, we'd wind up needing a trim or two and THAT is just a guaranteed mess with everything. If this was a shorter time frame, I might feel differently. But she's in the camp of 6-8 months is likely.


Since public appearances aren't an issue, I like the idea of dealing with each section individually and only washing when really needed (stinky/goopy, etc.). Brush a section with the Tangle Teezer, then braid / bun / caterpillar as desired. You can do different things on different days to give her some flexibility with style and comfort. And perhaps the sweet neighbor lady (Miss Pat?) could knit her an awesome cap that can go on around the HALO (with open slits and flaps and buttons, as needed)?

Miss Pat is our old neighbor, but heh, she's already knitting her an octopus hat. And since she's got to wear a halo, she needs a hooded sweater with a pattern knitted in of wings.

But I kind of forget that this isn't normal in a way. She's got to have the fusion, and she's got to wear the HALO. She's old enough to get that. She's also old enough to know full well what she wants to do with her hair. So why am I going to just set up for a battle with that? It's not worth my time and hassle and I'd just lose. She's ok with (for now) that if her hair does cause problems with the HALO, she'll getting a short cut that'll be meh at first from me, but she can get the full blown, pampering fun spa day with a pretty cut once the HALO is gone. We'll go for a spa day either way (come on, 6 months without a proper shower and wash?), but that's just helping her know that there's an end.

School - that's fine. She'll have a para daily, if she feels up to it, they'll have a classmate or two come out for the day. Everyone's been fine with the Aspen, so it's not bad now. Yes, the whole shebang will be a huge shock, and it's kind of ick looking at first, but we'll keep moving forward.

Sleep - meh. She's happiest in the recliner, I don't see a need to change that. J camps on the couch at night with her. J helps get all the pillows snuggled up right so she can sleep, and they think it's fun to camp in the den. Both are sleeping fine for now at least. If she needs to sleep in another place/position, we'll do that.

But all that is written out twelve times over. I get all that. But everyone says it's easier to cut hair than keep it. Probably true for a toddler, but not a stubborn 11 year old.

embee
January 13th, 2014, 08:01 PM
Well, for sure you can't really force the issue - that would be plain mean with all the other stuff. But you have some ideas here and that's worth something.

At least it *is* hair, and it *will* grow (back). :)

MandyBeth
January 14th, 2014, 01:16 AM
That's the EXACT reason I will never force image issues so long as she's healthy.

9/11 of her life, she had no control or say over her image. That set up her concept that chaos and denial of her basic humanity are the acceptable normals.

Now it's 2/11 of stress and chaos because she doesn't have a concept of normal and several hard surgeries and family stability issues convince her that we'll remove her dignity again.

So, if I demand X will happen to her, but refuse to guide her through why and try to see if any of her concerns can be addressed - bam, remove two years of progress and she'll have no means to trust me.

I'm so growly about her hair. Because all the HALO groups say pixie cut. Which is for the caregivers convenience, not for her. Then because she really, really wants the pins anodized to blurple. Her teams said that's fine and several have said absolutely because it is a part she can control. But, forums, I'm coddling to her demands. Yea? So the frack what. She's a hurting child, I always comfort them. This is nasty, she'll have extreme limitations on everything. So she's getting anodized pins, knowing if they aren't behaving, she'll have to get them changed.

Yes, all my babies have stability issues. By now, BTDTHTT. That's our normal.

Mustang Suzy
January 14th, 2014, 05:37 AM
:blossom::grouphug: for you Mandybeth. Take the Halo forums for what they are worth. Unless a doctor says it is a medical/health issue - continue to do what is right for your child. Eleven is a hard age - not a kid but not a teenager either. I applaud you for taking her wishes into consideration. In the long run it will build trust between the two of you and reduce the "friction factor". You are amazingly strong and will continue to handle this situation gracefully.

embee
January 14th, 2014, 08:48 AM
Well said, MandyBeth and more power to you. Maybe it will be easier to just *read* on the HALO forums - the way we long hairs have found it better to quit talking about hair in the Big Blue Room. We can talk here, but not there.

Obviously a shaved head growing to pixie will be "easier" for somebody, but not if you damage the child and the relationship. Also, her hair care will be another bond between you, which is vital. Be sure to take pictures of the different styles you come up with, because they can always be tossed if she doesn't like them, but they are great life markers, family markers. I would suggest purple flowers and ribbons/bows for the HALO as well, if that is permitted.

I was in a wreck way looong ago, and had to wear a body brace for months. None of my clothes fit over it, and the front of my hair had been shaved for stitching up a face/scalp wound. But I have no pictures from this time, which makes me sad. Some of the clothing I came up with was rather pretty in a muu-muu or maternity tent way. :) Color, pattern - bright and happy. Heaven knows, I was alive, and not paralyzed, something to be happy about.

mindwiped
January 14th, 2014, 09:45 AM
You mentioned sink washing, and after a couple of weeks you may be able to do it, but the first few weeks I see your DD feeling too top heavy or in pain to manage the sink...I'm sure you know, but there are no-rinse 'shampoo' caps to help refresh, and they might help with things if her hair gets that puberty/oily scent. I know you'd have to dissect it to fit around the HALO, or put it over your hand and just scrunch it through her hair, but it could help. I googled 'no rinse shampoo cap' and found results on many reputable web sites. The Comfort brand that's on drugstore.com is the ones that the hospital I work at uses, and it helps greatly for people who can't traditionally clean their hair. A parent of a long haired child I cared for said that she cleared the counter next to the sink, and has her daughter lay on the counter face up with her head in the sink. It might be a way to get it shampooed, since it won't require as much stamina or balance.

I agree that its worth it to do your best to let her keep her hair long, especially with the trust issues, and the fact that she sees you value her opinion in the matter is important. I hope that you can make it work, and that if it's needed that she understands that it wasn't a change you undertook on a whim. I wish your entire family the best and will keep your daughter and you in my thoughts.

MandyBeth
January 14th, 2014, 09:32 PM
The "fun" of damaged children - my youngest cannot, to this day, handle washing her hair in the shower for 95% of the time. We're well set up for counter washing. Both girls are quite petite, DH and my 16 yos can easily pick her up while fully supporting her head. So that's the easy part.

One mom contacted me, her daughter had a shorter cut and she found it much worse. With longer hair, it's easier to stretch washes out normally and since she'll be limited being out, it's even less of a BFD.

Yes indeed, once she's feeling better, the whole gear will be decorated. Because she can. No glitter, boo, but ribbons, flowers and crystals.

But, honestly, I just don't see this as anything special. What am I supposed to do? Seriously, I grew up with my crappy health, and even as an adult my parents did everything possible for me to get the absolute best possible care. Heck, my massive knee explosion and repair, my Daddy was with me the ENTIRE time, which was week after week after fracking week and out of state. I always had a stable, safe, loving home. But, I still got screwed up by the chaos from my health. My girlie knows nothing but chaos. So, we are working to help her relearn what normal is. Which means we respect her desires for herself so long as they are safe. If not safe, we work with her to make safe decisions.

mindwiped
January 15th, 2014, 05:29 AM
...
But, honestly, I just don't see this as anything special. What am I supposed to do? Seriously, I grew up with my crappy health, and even as an adult my parents did everything possible for me to get the absolute best possible care. Heck, my massive knee explosion and repair, my Daddy was with me the ENTIRE time, which was week after week after fracking week and out of state. I always had a stable, safe, loving home. But, I still got screwed up by the chaos from my health. My girlie knows nothing but chaos. So, we are working to help her relearn what normal is. Which means we respect her desires for herself so long as they are safe. If not safe, we work with her to make safe decisions.

And that's what makes your parents and now you and your DH unusual parents in my experience. Not whining or bemoaning the situation, but finding the best solution for the situation and thinking ahead and planning a solution before it's an issue. Not every parent deals with it so complacently, and I worked with all too many who expected me to solve all their problems, so I may be viewing this at an odd angle from your perspective. Thank you for working so hard on your children's behalf to create normal in a society that relishes drama. I know from reading what you've written that you view it as your duty as their parent, but all too few do anymore.

If there is anything I can offer in advice or support please feel free to ask, I know I'm new here, and you all are getting to know me; since I lurked before joining I feel like I know some of you more than I know you know me. I'm trying not to push in, but I thought I might be able to offer a solution you might not have thought of for letting her keep her hair long and being able to wash it as needed through the healing period.

I do think it could be distracting and entertaining for her to create hairstyles around the HALO, and seeing how she ends up decorating it to make it hers would be fun.
I know I tried to have a friend help me braid my hair back tightly enough to survive the first few days after I had an elbow surgery. It didn't make it 24 hours, and I'm not at all tender headed, so it was a tight braid, I just have very stubborn hair, and before surgery I couldn't open a door without pain, so getting it back tightly enough by myself was not possible. In the end, hair was part of my PT...getting it pulled back and under control made me try to use it, and left me with greater range of motion than just babying it would have. But I had no motion restrictions after surgery other than 'you'll know when you've pushed it too far.'

Juanita
January 15th, 2014, 06:27 AM
I was thinking something like multiple braids maybe above and below to fit around the halo. And coiled around themselves. Can then be combed out individually and also cleaned individually.six to eight braids depending how thick her hair is. Best wishes to you all as a family.

MandyBeth
January 15th, 2014, 03:38 PM
Nope, you aren't pushing in at all! My concern with the caps is if the product will be irritating to the attachment points. I'm checking with her team on that, but they may work fine later on. Certainly will be nice if her length gets icky or goopy to avoid the whole setup.

Trust me, I'm whiny and irritated about everything. But, this is the only option for her, we are not giving her up. So, I need to get ideas on what to consider now vs when she's sore post surgery and has a matted, gunky mess going on. Plus, I'm the worried Momma Bear, I some days don't function normally. So I have no shame in begging for help.

But, we've glued eyes to a scrunchie for her topknot. I'm not sure if it's an octopus or a spider. I just know it's cute. Otherwise, she wants the setup to be a UFO. We aren't normal.

Oh well, countdown is on.

embee
January 15th, 2014, 06:34 PM
I think it all sounds great. :) Seriously. And when you make spiders, octopi, or UFOs please make pics. It will be about impossible for her to explain 20 years from now. :D Personally I fail to see what is not normal about your aims, ideas, and plans. She's a kid, this is gonna be rough, try to find some fun and enjoyment somewhere in it.

I would start with a number of braids that can be worked around/between the points and can easily be taken out one at a time and combed, cleaned, rebraided. The fewer tangles the better, especially at the start.

Googly eyes for the spider..... Sometimes Momma Bear is what you've got to be.

swearnsue
January 15th, 2014, 07:32 PM
Just a thought, could you start braiding her hair now to get her used to it? Maybe comb and braid while relaxing together? This would get her used to the feeling of braids and give a positive association with relaxing and braids.

Each evening do a different thing, one time 4 braids, next time 7... make it fun and creative?

MandyBeth
January 15th, 2014, 09:00 PM
Not normal because hrmph, stupid HALO forums don't think we should make it this fun. Frack that. This isn't fun at all. We're just trying to get through. She's ok now, but a bit iffy because every surgery makes something worse at times. First the arm issue, now the instability. So, we are trying to get by.

She's ok with English braids now, French/Dutch are not ok yet. But, the topknot is ok, so spider or octopus it is.

Juanita
January 16th, 2014, 02:35 AM
What aren't happy relaxed children allowed? I thought the best thing is too make it as positive as a bad situation can be made. What ever can be done to ease their stress. They don't sound like nice people on those forums.t must be remembered that there is a person not an object receiving the treatment and mental well being is just as important as their physical well being.

mindwiped
January 16th, 2014, 05:22 AM
Nope, you aren't pushing in at all! My concern with the caps is if the product will be irritating to the attachment points. I'm checking with her team on that, but they may work fine later on. Certainly will be nice if her length gets icky or goopy to avoid the whole setup.

Trust me, I'm whiny and irritated about everything. But, this is the only option for her, we are not giving her up. So, I need to get ideas on what to consider now vs when she's sore post surgery and has a matted, gunky mess going on. Plus, I'm the worried Momma Bear, I some days don't function normally. So I have no shame in begging for help.

But, we've glued eyes to a scrunchie for her topknot. I'm not sure if it's an octopus or a spider. I just know it's cute. Otherwise, she wants the setup to be a UFO. We aren't normal.

Oh well, countdown is on.

The issues with it working with her HALO, is part of why I mentioned the specific brand that my hospital uses, obviously, with everything medical, have it checked over, but I know they use this brand in house with pts who have all sorts of hard wear, shunts, drains, screws....

Whiney and irritated maybe, I don't see it, but planning ahead, and thinking of solutions before they're a problem is what really impressed me. I know you've been dealing with the medical stuff for a while now, but your willingness to do whatever is necessary to make her quality of life better makes me want to nominate you for mom of the century. Not every parent is so good at trying to be forethoughtful.

Would anybody else here be willing to send MandyBeth's DD any fun cool hair toys? I would, but hate to just step in and demand your physical address. I know you said she likes purple and isn't used to having her hair any way other than down loose...maybe some cool hair toys would help her manage to keep it restrained enough to keep clean during recovery. If you didn't want to share your actual address (completely understandable), you could set up an Amazon wishlist. It would let us ship something without the loss of your privacy.

For a way to keep the loose feeling, but have it restrained a little, maybe something like this would work: http://www.etsy.com/listing/153884967/vintage-style-pink-gingham-mini-snood?ref=sr_gallery_9&ga_search_query=ponytail+snood&ga_order=most_relevant&ga_view_type=gallery&ga_ship_to=US&ga_search_type=all She does custom ones, so I'm sure you could get one in purple. Or maybe your crafty neighbor would be willing to knit/crochet one, it's a pretty easy pattern.

Something like this could work too, since it could be worked in around her HALO: http://www.etsy.com/listing/129651724/charcoal-black-polka-dot-rockabilly?ref=shop_home_active_3

As everyone else has said, please post pictures of the fun things you come up with. I might need your experience with what works one day for a pt, but I'd also just love to see what you've come up with.

embee
February 11th, 2014, 02:56 PM
Which will be done first week of February.

Well, how did it go? Been thinking about her and hoping she's doing ok.

truepeacenik
February 11th, 2014, 03:27 PM
How would she feel about a Mohawk? Looks like side hair is the biggest PITA, while looking at web images.
Maybe a purple Mohawk?

And maybe get or make a pony scrub cap or three.


and if every third kid has multicolor casts, why can't a kid stuck in a halo get to be a little fun in a sea of suckage?

MandyBeth
February 13th, 2014, 09:16 AM
Surgery got bumped back - now it's on Monday. There was a potential issue with her shunt and they want that fixed first. There's always the potential for issues later, but didn't want two at once if we can avoid it.

Good part to her - since her hair is still thin from before, I can actually braid big enough parts to hopefully limit shaving if it's needed at all. I love her surgeon, he's got a preteen daughter, he gets the issue.

I can't post pictures of her legally (foster kid, potential of issues from country of birth), and I've never been willing to post pictures of kids until they're eighteen. Kids lose so much of being kids too early, I try to keep some privacy for them to not worry more about if pictures are being stolen and used inappropriately.

embee
February 13th, 2014, 10:10 AM
Thanks for the update - it was odd seeing nothing when the OPost said "early Feb". And you were still posting elsewhere so you all hadn't fallen off the earth. ;)

Understand about pics posting, but what a shame we live in such a world that it would be a problem. :( Still, you *take* plenty of pics for her records, make her a scrap book of it or something. It's grim, but it's also something to celebrate and so easy to forget things over the years.

Best wishes to the child, she's got a grand support sytem team! :)

MandyBeth
February 13th, 2014, 07:53 PM
Yeah, my bad. I was going to update once she'd had surgery since there's no real changes.

Yeah, we take a lot of pictures. Both of what she can do and what she wants to do. Then, come this time next year, hopefully we can have those wants as done. We've had drama - major hysterics that were justifiable because social worker kept making sure we knew the long term care, hard on families, blah de freaking blah. She just flipped out that we'd get rid of her. So I went psychotic Momma Bear on our now ex social worker. Yes, I know there are long term care requirements. Which of the other kids hasn't had long term issues? Considering there are some that I'm not even bothering trying to fix, that's not a deal breaker. DH and I can both work from home, plus Grandma is coming out for a few weeks at least, my cousin is still here and can help, the adoptive grandmas who help neighbor are claiming time with the kids here also. It's going to be stressful and mayhem and all of us are going to have crap days. But I figure just like every time before, we won't all have breakdowns on the same day, so we can get over a bad day while the others help. I don't take kindly to implications that my bratty, obnoxious, rotten hellspawn aren't worth my time or interest or care. They may be rotten monsters, but they're my rotten monsters. Plus, erm, what do I want with some sedate, healthy, angelic child? That'd last an hour before we corrupted the kid. Because I've long given up on what they listen to - I do still restrict videos at least. Mostly because DH forgets Rammstein has a song and I have listened to NIN so often and now don't really hear lyrics until a kid goes What did he say? Oops.

GRU
February 13th, 2014, 08:27 PM
Please let us know when the surgery day is so we can keep her (and the whole family) in our prayers!

MandyBeth
February 14th, 2014, 04:49 AM
Surgery is Monday, she's first up and the only morning surgery. With the final tests, she'll be admitted Sunday.

In my crazy world - I have a ton of contacts. And since she's already a HUGE hockey fan - I emailed my friend because dang it, I can and my girlie could use something fun. WAY better than I ever imagined. She's got a hoodie for now and a jersey for later. Signed in purple. By every single player, coach and former players who are around. Our team is the BEST! Way better than SOME teams *cough*any team who has signed a certain sucker punching thug*cough*

(Yes, GRU, I had to cough, really)

{For those confused, I despise any team who has signed Bertuzzi. Despite being a die hard Avs fan, I really didn't hate a certain team that I should hate until the signing. But that removed any remote like that even goalie fights don't make up for. Yes, I know, they won the favorite fight, it was still awesome.}

embee
February 14th, 2014, 07:29 AM
It must be challenging for a social worker to explain everything to the parents, not leave out the kids, not freak out the parents, not freak out the kids. I know for Parent/Teacher conferences I wanted to include the kid, after all, that's who we're talking about, I'd like to hear what the kid had to say on the subject. It always threw the teachers for a loop. ;)

Gee, and we thought "MB" stood for "Mandy Beth", now we know it means "Momma Bear"! :D You go!

Holding you all In The Light - including the happy, well-rested, dedicated surgical team.

Crabbyco
February 14th, 2014, 08:45 AM
Mandy Beth, I love your posts about your kids. You inspire me to be a Momma Bear!
My kids have asked "What did they just say?" or "Mom, do you understands what they are talking about in that song?" I try to use it as a conversation opener. We live in a big scary world and while I would love to lock them away from it, that just doesn't help them become mature adults. The best is when they play this "really cool" song for me and are shocked that I already know the words.
Its sad that the Social Worker needs to tell you the hard facts about the long term care for child. That tells me that there are people in this world that have promised to take care of a child and when the going gets tough they bail. Sure your a foster parent but that doesn't matter to the kid. For whatever reason their birth parents aren't in their lives and they all deserve a Momma and Daddy Bear!
I will pray for your family, doctors and nurses. God Bless you all.

GRU
February 14th, 2014, 03:36 PM
(Yes, GRU, I had to cough, really)


You know I love my Red Wings team, but I am *totally* on board with the whole Bertuzzi thing!

Please post updates on Monday if you have time, or shoot me an email/text and I can post here for you. Hugs to our girl!

truepeacenik
February 14th, 2014, 06:02 PM
Red wings suck.
Sorry, that is reflexive.
;)

(Heck, I watch college hockey. Started with the DU Pioneers, realized it was often on in the bar by my office, so I'd pop inand watch to get away from ringing phones and BS.)

Sending my best thoughts to your lively hell spawn on her hellish day.

(You don't think your social workers read this board do you?)

And tell your friend that the story of the hoodie and jersey brought tears to eyes.

GRU
February 14th, 2014, 07:52 PM
Red wings suck.
Sorry, that is reflexive.
;)


It's a requirement to live in CO, isn't it? LOL

Honestly, I don't even watch the Wings anymore -- my own kid plays plenty of hockey for me to watch!

MandyBeth
February 14th, 2014, 09:59 PM
Being an Avs fan these days guarantees more hate than late 90s era hate. Thugtuzzi issue.

Started with USHL local team (They suck, but I love em still.). Then best friend was next door in the dorms to a few hockey players for the brand new team, so followed them in all their crappy play and still will always love my UNO Mavericks even though we're in DU territory now. NHL was fun, but then saw the rats raining down on the Avs and I was a diehard Avs fan. Further helped by getting way too much amusement out of a certain neurotic, quirky goalie who was prone to fights. Dumb refs, didn't let Roy and H‚sek fight in 02.

Now I'm just corrupting more little Avs fans/Dead Wings haters. Even if they're worthless traitors who support DU vs UNO. Eh, they're ok until they support Michigan State. Ick.

MandyBeth
February 14th, 2014, 10:30 PM
New social worker finds it funny that the kids get called rotten by us, since he got right away it's not mean spirited at all. He gets that if a kid fits us - that's it, we're family, no matter how bad it gets. But, seriously, the "worst" issues these two have are lack of security. It's dang hard. It's frustrating for them to be forced out of chaos into "normal" because chaos is normal. Having your own clothes is strange and scary if that's never existed before. Being hugged, rocked, tucked in at night are extremely odd and put them in risky positions. But, heck, btdt but with the addition of no stability at all. Add in the reality that you'll be moved again with no notice or warning. Yeah, we have some kids who are really damaged in many ways.

Do I want to deal with very serious medical problems? No, not really. I can't think anyone thinks this is fun. It's not. It flat out sucks. But it's surgery or paralysis at a fatal level. I don't consider option two to be an acceptable risk. Really, unfortunately, I'm entirely too well versed in medical crap from myself and kids. So, it's not this unknown world. Which helps. I know what areas to push on (limited shaving if possible, anodized titanium pins) vs no way (extreme restrictions on travel, proper care of pin sites), so the teams are more willing to see what can be done even if that's not the preferred standard.

embee
February 15th, 2014, 07:34 AM
Glad you have a worker who can read your tone of voice and your look of love at the kids. Sounds like maybe a real person for once. :)

When DD and I were "in trouble" with each other (about age 10 and up), we spent a good deal of time dancing around to music, slow dancing because there's more hugging there.... and that was the point, hugging. Now that she's in her 30s we still will dance when she's here (all too seldom, lives soooooo far away).

truepeacenik
February 15th, 2014, 10:14 AM
Yep, music kept Spawn and I bonded. We are, basically, friends today.

I'm part of his Advisory Board, and he will bounce things off of me.


On knowing one sport but not another.
Eventually, I'll recognize the Raiders who get massages at the clinic.

You could put. Patrick Roy on my table today and I'd recognize him! but a currently playing football player? Nope.

Weird. I should be a Raider Hater, but I feel I have no horses in that race.

I'm familiar enough with baseball, thanks to my partner, and a love of baseball movies.
I do dislike LA, but the only live games I've seen were in SF, so....territory.

Hoping an easy ordeal for your beloved hell spawn.
She should still get purple hair.

MandyBeth
February 15th, 2014, 10:45 AM
Oh, she's getting purple once she's up for it. At least past her shoulders. Because, really, isn't now the best time with limited washing.

Can't say we are friends exactly yet, but I don't say that's bad. I'm a parent first right now, and I have horrible, whiny teenagers some days. They're usually pleasant, good kids - but some days, I think locking them in cages wouldn't be too bad. I can be a friend now and they'll hate me later. Or they can hate me now, we can hopefully be friends later bit they'll be decent, responsible adults at least.

MandyBeth
February 17th, 2014, 08:04 PM
Very long day, blech. MIL is here with us now, so I can update.

Surgery took a bit longer due to prior surgical involvement, but that was expected. She came out well, but very fussy and clingy. That's actually a decent sign, prior crap, she doesn't want anyone due to the lack of care for most of her life. The rest have been equally fussy, clingy and whiny, nurses think she's very calm for normal cases.

Started getting her rock smudging headaches, again expected. Everything is fussy right now, so there's additional swelling and her shunt was too slow. So adjusted that, got the pain back down. Got a little pre nausea type deal, but that settled with meds and a popsicle. But, only cherry popsicles work. Caffeine free Coke gone flat is helpful also. She doesn't like the fizzy bubbles.

She might be a bit spoiled. Maybe. Grandma's privilege. Because she NEEDS three stuffed animals. Plus a purple kitty wearing a HALO. And a special hospital blanket and pillow. And purple fleece gripper socks. And purple hospital gown cover. And newly added purple braid covers, so her braids stay covered to not get anything more on them along with satin liners to hopefully limit snarls. I'm ready to puke with all the purple, but she likes it.

Best news to her - her parts were just big enough to avoid all shaving! Scrubbed her up, rinsed after everything was in. It's going to be an unholy mess for a while, but it's ok. Worked oil in some after, but since we're going for doing nothing to her hair as much as possible, the dryness shouldn't be too bad in the end. If it is, we can deal later.

Everything looked as expected. Hopefully out around August. Doctor said MAYBE June, but we're not preparing for that. Also, her gear will provide some scoliosis support. If it works enough, we'll know the long treatment, but avoiding surgery will work. Otherwise, we'll be back for another summer surgery next year. She wants until August, as she really, really wants to avoid more surgery.

But, it's been very long, so she's asleep and I'm going to nap a bit.

GRU
February 17th, 2014, 09:24 PM
But, it's been very long, so she's asleep and I'm going to nap a bit.

Thoughts and prayers to you all.... rest while you can!




(And I don't know what your problem is.... purple is obviously the BEST COLOR in the world!!!)

MandyBeth
February 17th, 2014, 10:11 PM
Got a nap. Eh, my sleep cycle is jacked up more than normal, so I'm awake.

Purple is fine, I like it. But it looks like a purple unicorn exploded in her room. But, she's happy, so exploded unicorn it is.

And I'll put up with nearly anything to have a fussy, clingy, purple worshipping kid awake with full ROM in what she can move and no numbness or tingling. Made me VERY happy when she was all kinds of melodramatic crabby because one foot had gotten uncovered and it was cold and she wanted the blanket back but was way too blitzed on pain control to actually move her foot back under the blanket. And proof we have corrupted her - a resident checked her feeling in her feet, for about the 50th time. As he goes to squeeze her foot, she blurts out "If you poke me, I'll kick your a**." Then totally forgot anything had occurred two minutes later and was getting annoyed at Grandma still snickering. But that was fixed with another popsicle. She's so high, but she's not hurting and is reasonably comfortable. Oh well, if nothing else, it's funny. In an I'm a horrible, horrible person way.

styric
February 18th, 2014, 12:20 AM
As people may know, DH and I are adopting again. The young man has leg amputations which is how we met. And, thus he came into our home, bringing his sister with him.

Our beloved big girl has a few spinal issues, has had three surgeries already (shunt put in in native country, the whammy trio of Chiari decompression, freeing her spinal cord, shunt change in US by a very wonderful team, and another shunt change back to the prior as it's more comfortable to her), but she'll need at least two more - scoliosis is 80% likely, but we're going to try to avoid surgery. Fusion however is needed now.

She's in an Aspen cervical collar, the shunt #3 caught some instability that was grossly magnified by her improvement from second surgery when she gained more mobility. Thus, fusion is needed.

Which will be done first week of February. However, that leads to issues.

She's got mid back to waist length hair. She's already upset about the pin areas being shaved. I can't find cutting her hair short will benefit her mentally. The doctors agree it's not required, it's just drastically easier.

So, any hints on taking care of her hair? This will be 12-26 weeks, so while it may be a hassle, I figure we'll get used to anything. We're well set up for washing hair in the sink, but I figure keeping it detangled will be the bigger hassle. Plus, she'll be home or at doctor's only for a good majority of the recovery as she's too big for high back booster seats, but the HALO will make her top heavy. And there's no good way to tether the frame without a five point harness.

Kids here are busy sending all their doctors' great great grandchildren to Harvard.

Does she have EDS? This combo of CCI-Chiari-IHT is common in us EDS folk. If she does, I would expect her hair to fall out and thin quite a bit. I would really recommend biotin, and also cutting it back due to weight. The less weight on a healing fusion, the better. Dry shampoo is your friend, but I would honestly cut it short.

I can put you in touch with a friend who got decompressed and fused a year ago if you like.

embee
February 18th, 2014, 07:01 AM
Good to hear the surgery went with out troubles. Good about all the purple and no shaving... Good about the bitching whineyness, good about the feeling. :)

Sending best wishes and support to the family and the patient. And best support for the good doctors and other med staff who get cussed at! :)

.... uh, and I think she's gonna be a real handful when she gets out of all this!

Crabbyco
February 18th, 2014, 07:12 AM
Yaaa! for a clingy, crabby purple girl! Still praying for you all.

mindwiped
February 18th, 2014, 08:52 AM
Glad things have gone well, and very happy for her sake that she didn't have to shave anything. She and the entire family are in my thoughts. Thanks for updating us.

truepeacenik
February 18th, 2014, 09:38 AM
Purple kitty in a HALO for the win.

But exploding purple unicorns was a close second. Here's hoping they are far from the pinky side. Because that is truly nauseating.

How long will they keep her high on pain meds? Because I see that as a good thing. She has had enough pain for a while.

Get some good sleep when you can.

MandyBeth
February 18th, 2014, 11:32 AM
No real changes, so same as yesterday. But, we'll take that.

Not EDS per Dr F via phone consult.

ArienEllariel
February 18th, 2014, 01:36 PM
Keeping you all in my thoughts and prayers. An extreme purple explosion is definitely making the best of the situation. I had to look up what a halo was and I have to say that would drive me crazy to have to wear one but considering the alternative, it's necessary for a happier healthier life. Kuddos to you for being patient through this and so supportive. <3 *hugs to you and the purple unicorn girl* :)

MandyBeth
February 18th, 2014, 08:14 PM
Embee - heh, she's actually really a very kind natured kid normally. But, yup, annoy her to the extremes and she'll push back. Way less checking today, plus not quite so loopy from anesthesia so she's not bothered by the checks.

True - her main spinal doctor is very clear. First part is that she does not hurt needlessly. Yes, most surgeries, the goal is up and moving. But, this fun, she's really out of balance, a fall is not at all safe, they can do more to stop vein clots but next to nothing if the fusion falls at her level. Damage at her level is either fatal or has less than good odds at even a year out. To the point, he doesn't feel treatment is ethical. So, keep her comfortable, keep her reasonably quiet, they'll deal with getting off pain control later. A big part for her is the anti anxiety drugs, but I've seen the reports without them and she is very panicked and will try her hardest to avoid being touched. Yeah, give those please. Fun of special needs Eastern European disrupted adoption.

I'm not trying to totally dismiss EDS. But, in countries with appropriate standards of medical care - yes, the three are common with EDS. There's a few other issues that like to add this crap, but with the medical care, either the problems are fixed very early or aren't allowed to develop to needing surgery. She didn't get that care, she gets the problems now. Yay.

But, sibs came by. Little minion stayed, those two are still giggling while plotting world destruction I think. So it's not all bad. My big minion is actually in there still. Hey, at least it gives the nurses a break from current tween pop music.

MandyBeth
February 20th, 2014, 08:44 AM
No major changes, still doing well. Braids loosened a bit up top, but she's liking gentle scalp scritches now.

Besides, worse case - her hair locs up. It's not dried out and stripped of all oils. I do know very well how to get this out without pulling. I'm starting to suspect her texture is loose enough, locing isn't the issue my little minion has.

embee
February 20th, 2014, 05:12 PM
Thanks for the update, I check here every day just to see. Hope things continue going well.

truepeacenik
February 20th, 2014, 06:53 PM
Mandy Beth, we need a cast list for your kids!
I've lost track of how many, etc.

MandyBeth
February 20th, 2014, 08:08 PM
Eight of em -

CK and K are 16.

M is 13, full sibling to N and L.

N is 12, full sibling to M and L.

Big minion - use Y on other forums - is 11. She's the one with the HALO and is related to E, unclear on full or half siblings.

E is 9.

J is 8 - he took over J from youngest - he's the one with Drac.

L, formerly J is 8 and the youngest. Best known here as I've had eight million questions on her very curly hair. Full sibling to M and N.

Boys tend to pack up and cause general mayhem and mess, just like DH.

The girls, frequently called minions, are payback for my teenaged years. I love my boys, but my girlies and I have fun being in charge at home.

truepeacenik
February 20th, 2014, 09:32 PM
Karma really bites you in la butt, nu?

All adoptees?

Natalia
February 20th, 2014, 10:18 PM
Hmm im not terribly familiar with HALO's though an acquaintance did have to wear one for quite a while last year. When I was volunteering most of the little girls who had them did large box braids inbetween the points. Larger braids are easier to undo for washing and depending on thickness you may only have 4-6 braids to re-do afterwards. Im not of much help sadly but hope you can find a good solution to get by

MandyBeth
February 20th, 2014, 10:28 PM
Eh, we NEVER felt the kids were karma chewfests. But, yeah. I am this bullheaded, stubborn brat. My girls are the same. It drives me crazy at times. But, then, duh. I love their strong, self assured, powerful natures. I'll take going crazy for these awesome girls who will be positive leaders as adults. I'll love the mess and mayhem of six boys for the strong, caring men they're turning into. I'll worship this screaming insanity for the people of quality they are.

Yes, all adopted. Well, six adopted, two in process. I'm spayed, DH has disconnected pipes. But, my genes are crap. There's no moral or ethical reason for me to pass them on. Plus, I'm on category X medication. Thalidomide is well known, methotrexate makes thalidomide look like a scrapped knee.

Oh - I do still use J here for youngest. Mostly as that's how people know her, and not much reason to mention her brother here as he likes his buzz cut.

MandyBeth
February 20th, 2014, 10:35 PM
Anyone who just says hi, or that I'm not coddling a brat by letting her keep her hair, is help!

Right now, she's got braids that have dividing points at pin sites. Those are still covered, but doing well. Pin sites look great, everything is as comfortable as possible. Her scalp is very tender yet, so scritching gently is all she can stand yet.

lapushka
February 21st, 2014, 03:18 AM
MandyBeth, I have nothing much to add, but offering you lots of hugs and support for the next few days. The worst has passed, hopefully! :grouphug:

embee
February 21st, 2014, 05:25 AM
Say hello to the child from Smokey the feral cat:

http://buncombe.main.nc.us/~mbbweb/cats/SmokeyWashing.jpeg

He has his challenges too - mainly being terrified of people. But he's getting some loving twice a day with his food. :)

MandyBeth
February 22nd, 2014, 06:42 PM
Heading home Tuesday it looks like. Kid is doing very well, issue has been getting her shunt back in line, swelling has done down, so it was too fast.

But, did carefully brush her sections of hair, oiled from shoulders or so down, then put back in braids. Not too bad with the Tangle Teezer. Didn't move the parts yet, just loosened the scalp areas a bit, that's more comfortable and it's fine to check and clean the pins like this.

Surgeon checked her, gave full support to her hair. A big issue is hair tangling around the pins or supports. But with her hair confined and us keeping a very close eye to stop the tangles immediately, he thinks this will be easier. With a pixie, we can't keep her hair confined.

embee
February 22nd, 2014, 07:22 PM
Sounds great. bet she's ready to go any time. :) Glad the hair is working out well. Sounds like the surgeon is inspecting her with mind and heart, which is very nice.

embee
February 25th, 2014, 06:00 AM
Best wishes for a safe trip home and a comfy adjustment to the "new" environment with HALO in place. :)

MandyBeth
February 25th, 2014, 10:48 AM
Thanks Embee!

She's home, feels rough from everything, but she handled it like a trooper and is now back to sleep. Zero, world's laziest JRT, has realized if he hands her things when asked, she lets him stay in her pillow nest and he can snooze in extreme comfort. Plus, the other dogs don't bug Zero in his chosen den, thus they're also not bouncing on my big minion. Win for her, 90% win for Zero since he has to do some work like pick up the remote from two inches from his nose. Don't strain yourself Mr Lazy AntiJRT.

MandyBeth
February 25th, 2014, 07:29 PM
Still doing ok. Very tired, but that's normal. Can walk some, but not real comfortable on her own. DH and my big boys can carry her easily, so that's her reality for now. Dr thinks she'll get used to everything and be mobile in a few weeks, but let her move at her speed.

Zero may be a lazy butt - yet he's smart. She tells him to touch, he comes, finds an adult (or near adult), sits and taps his paw against your leg. Same as Dracula does. Hey, more effective than her yelling. Zero discovered he alone gets a special treat for touching, so that's ok work.

The girlies are snuggled in after dinner, busy watching the 10th Doctor. Still den camping. Recliner is extremely comfortable to sleep in - best $25 from Craigslist even if it's a nightmare to defuzz. I think the chosen couch is an uncomfortable option, but the kid likes it so whatever. Then again, I think she's got twenty stuffed animals with her, so she probably sleeps on them more.

The purple fairy riding a purple unicorn exploded in there, but oh well. I'm happy we're all home again. Social worker visited, one of the boys made gagging noises about the purple, but SW said we're looking good. Probably early - mid October to adopt. Erm, I think I was planning insanity around that time 4 years ago. Then I forget it's been four years. Because it's 4 years next week that DH and I considered getting married. Life got a bit crazy.

I do love the crazy. Best stuff ever.

PamelaViktoria
February 25th, 2014, 07:35 PM
Could you make braids above the halo, and below?

Larki
February 26th, 2014, 12:26 AM
A parent of a long haired child I cared for said that she cleared the counter next to the sink, and has her daughter lay on the counter face up with her head in the sink. It might be a way to get it shampooed, since it won't require as much stamina or balance.
When I was 12, I had a leg cast for four months and this is what my mom did with me. Worked great.

embee
February 26th, 2014, 06:45 AM
When I was in my body brace for my fractured spine I do not recall washing my hair at all, but surely I must have. I was in my 20s and a perfect greaseball. My guess is that I knelt by the tub and DH poured warm water over my head and it all dripped into the tub - but it is very possible that I bought one of those hose/spray things you can attach to the tub faucet - I have vague memories of a turqoise colored one of those! (It was, after all about 50 years ago! :D )

I do remember the delight and terror of my first shower without the brace. I was sure I was going to crack in half and die. Even though the doctor had me doing exercises in the bed several times a day without the brace for weeks before I was allowed to stand without it.

Sleeping was a terrible problem at first as they got me a *hard* bed. I was very thin and my hips and shoulders and body felt bruised all the time, to the point of "going to sleep" numb - getting a latex foam mattress was the most wonderful thing! Sleep! Wonderful soft peaceful sleep!

embee
March 8th, 2014, 10:05 AM
How's the HALO girl doing? Time for an update! :)

lapushka
March 8th, 2014, 04:04 PM
How's the HALO girl doing? Time for an update! :)

Most definitely! :agree:

MandyBeth
March 11th, 2014, 09:44 PM
Sorry! We're our usual busy selves.

The pins itch a bit, but so far her hair hasn't been tangled up.

Britax sent a seat, so she can travel much easier.

She did feel well enough to go to a concert. A friend is running the lights, so she happily sat with him and got to help a tiny bit (band had given the ok, she just pushed a button when told). She had a great time, I'm glad we stayed in town for that. Every bit of normal helps, even if the kids are pretty dang spoiled from DH and my crazy contacts.

Today she just slept more, but not hurting just drained. Still worth it.

Worst for her right now is the scoliosis. It's just very tender from forced position. Another specialist reviewed her file, he's done more with EE adopted kids and their added demands. He believes surgery will be needed, but possibly less is needed post bracing. He will see her in October for an evaluation. Team here would do surgery, but his record is spot on for long term success. He finds the team to be outstanding, so that's making all of us feel better.

Juggling working with their original country, they acknowledge their prior adoption was complete, so we are thus legally mandated to adopt via US citizenship. Big issues are why the adoption failed and was anything done inappropriately. They weren't Hague requirements at the time, but the disruption is not to their standards and they fear paperwork may have been mishandled to get initial approval. But, they did sign off legally and will not challenge that. First in person visit at least, they will not come along until we are comfortable that adoption status won't change. But, country does have the right and obligation to know what went wrong, why it went wrong, how it went wrong, who was involved in the errors and how can problems be prevented.

truepeacenik
March 11th, 2014, 11:31 PM
Ha! Get the techs started young!
My son was patching cables by age 10.
Sold merch and glow sticks by six.

Your friend isn't a Stubby brother by chance?

MandyBeth
March 12th, 2014, 12:35 AM
I did tech work from 11 and on. Even now, if my friend needs help in my area, he begs me. Which is how I know a ton of people and get away with minor children at 18+ events.

Long story turned short - I had just graduated HS (so 16), and my Mom sat next to this guy's brother. He called to see if brother knew of anyone in the area, he needed help. So bro asked Mom if I could work, Mom said yes but I was underage. Friend had me come up anyway. I was a spider monkey, so he always got me to get up on anything. Now he just sends me info when he's around and we go do the geek side, then concert. I send him cookies. He likes the arrangement more than me.

Thus, my kids think this is normal. I forget it's not. Seriously, I've grown up around some bands, this is reality for me. Heck, we talk drummers, my first boyfriend (epic fail, we kissed and both of us jerked back and said it was like kissing a sibling) has worked with a lot prior to various bands, and he drug me around with him so yeah.

embee
March 12th, 2014, 05:43 AM
I'm happy to read that kid is doing ok, has some "normal" life in her cage. :) Glad the hair problem is not a problem. Neener neener to those who said "cut". :D

Hope all the adoption stuff works out for you, I don't understand half of what you wrote as I've never done anything in that field. ;) Paperwork is a b*tch.

MandyBeth
March 12th, 2014, 12:22 PM
Yeah, she's not out much, but if there's something after her needed appointments, we go. It's a long haul in that mess, doing nothing is boring. She just sat with our friend and another guy for the concert, had as much fun as my wild crew because she got to push buttons that were important. She's slept for two days, but so what.

mindwiped
March 13th, 2014, 03:31 AM
Have you managed to confine the "purple fairy riding a purple unicorn exploded" to one part of the house, or is she getting to the bored enough to spread the girl explosion everywhere in the house? In a way I hope she is, simply because that means she's not hurting too much, but I understand the struggle to live with a girlie person if you're not one. I swear at times I thought I'd do better sharing a dorm room with a boy, simply because I understood their motivation and lifestyle better.

MandyBeth
March 16th, 2014, 08:07 PM
Same as before. No change is good for now.

Papi was out for the weekend, so she got quite coddled for the time. But, she deserves all the cuddling she wants - 9 years is a lot to make up.

Gramma is staying probably the entire time. Thank God for her!

Purple is everywhere, but I do have another daughter. Outside of their bedroom and their current room, the purple gets well covered by six brothers.

Embee - Charlie and Asher sent a note. Gramma can stay forever because Papi spoils them rotten. Charlie has a ramp circling several rooms with rails so he can't fall off. Asher leads him up and down. They get gourmet raw food. Seriously, they've been served capon. That's why that move was far less stressful than with this insane asylum. Their sitter had to meet with them and FIL FIVE times and FIL called twice a day to speak with the cats.

MIL says I can't say she's spoiling her grandkids, since she's not nearly as bad as FIL with the cats.

MandyBeth
March 17th, 2014, 06:10 PM
Dr appointment went well. Healing is on target, HALO is stable, no problems.

lapushka
March 17th, 2014, 06:38 PM
Dr appointment went well. Healing is on target, HALO is stable, no problems.

That *is* good news! :)

Aingeal
March 17th, 2014, 07:31 PM
Wow! You've had quite an adventure! Glad to hear she's doing so well!

embee
March 29th, 2014, 10:59 AM
Any more updates on the kid? Hope things are going well and she is not bored out of her mind.

MandyBeth
April 3rd, 2014, 01:02 AM
Was out of town, so thus another delay.

Same as before in healing.

But, yay! Her hair is easy to wash, the team showed how to stabilize her head in the car so she can easily travel and she's stir crazy. So, with her three times a week checks, she's in school those days. She's so happy to go to school, everyone has been really helpful and while everything does look scary, it's now something everyone is used to. She can't do recess or gym, but her gym is when the oldest duo have lunch, so she's being allowed to go eat with them again. Recess, she prefers to go lay down in the nurses office, it's a lot of work on her. Since she's in enough, she gets the assignments for the days off, then Gramma works with her on keeping up.

Local team was used to either very young kids (the gear is way too heavy for much activity) or trauma (thus other reasons a kid isn't up and moving), so the concerns are not nearly that severe. The other team sees the older kids, and find this normal.

No, the local team wasn't wrong. Her problems are fixed here while very young, not at 11. Plus, with her history of nerve irritation from surgery, that was a concern. I'm glad for the problem warnings. I'd rather know the warnings and not have problems than not have the warnings then have major problems.

Still walking with her hands in high guard, but no other concerns on tests. She says it's easier to balance like that.

embee
April 16th, 2014, 07:57 AM
I'm glad she's going to school. I hope that means they won't make her "repeat the year" because she's missed too much - a stupid rule if I ever saw one. She's wise to guard herself against bumps and thumps and missteps. And very wise to nap when she can. Sleep is good for healing. :)

MandyBeth
May 25th, 2014, 01:11 AM
Updating finally!

It will be HALO until August. Due to prior malnutrition, she's pretty damaged physically and her bones are softer than normal and it takes much longer to heal. She's stable, no negative changes. The gear is still an energy drain, and she walks with the high guard for balance. Both relate to malnutrition. I'd happily kick certain butts then treat them exactly like my babies. Both are highly functional for their disorders. Similar kids are easy to adopt, even in country. But, they were tied in cribs because they're Roma. I hate people.

But, sigh. She's going to need scoliosis surgery sooner than later. The bracing is barely holding her spine stable.

And because we are insane, we're adopting another boy. Same orphanage and foster parents. I met with the country's ministry. Usually, we'd have too many SN kids. But, they were really pleased with how we care for our kids. This kid has so much promise, but his needed surgery isn't done there. Best options would be Germany or US. No one has been interested in him before - totally baffling to me, he's just so perfect as a brother. Ministry will let us adopt because there's no future there for him and no one else wants him.

Ugh. Part of me thinks no way, stop, no more right now. I recognize the problems with everything we are doing. But, DH asked about him before I said anything. Several kids independently told DH how Granddad (my father) told them about their new brother. I can look at any other child and feel sorry for the hell they are in, but they're not family. I see this boy and instantly I see my son. This feels complete. I give up to what logic says. Because I can make a 50 page list on why not easily. The only reason for is because he's our family and that outweighs everything.

GRU
May 25th, 2014, 02:30 PM
Luckiest. Kids. Ever.

embee
May 25th, 2014, 06:31 PM
Blessings on you, Mandy Beth for your new son.

And best greetings to the HALO girl, she's being so brave and tough!

MandyBeth
June 27th, 2014, 02:08 AM
Still healing. It's going well, but slow. It sucks for summer since she can't go do anything fun, but we have next year.

But, yay, straight As and Bs! On to 6th grade next year.

embee
June 27th, 2014, 05:00 AM
Good to have an update. :) Yes, summer is tough in a cast... been there done that. But the clothing situation is easier in summer.

MandyBeth
July 31st, 2014, 04:17 AM
Drum roll folks.........

Come Tuesday, the HALO is leaving! Her neck looks fantastic, everything is solid. She'll have to wear the back brace until they can safely do the scoliosis surgery, but that she can at least take off for an hour or so a day. Plus her Aspen collar until her back is entirely fixed. It will unfortunately be another summer of surgery, but she's ready to tough it out. Got some PT/OT to go for, mostly reestablish her balance, center of gravity and her gait. She's walked in high guard the entire time - the new walker hands out and up position like Prince George in the birthday pictures.

Hilarious thing - she's a big kid, no need for a "baby" seat but she put up with it because it was that or staying home. She got a Britax seat (went from Britax to Clek to Swedish Britax) and now loves her comfy seat. Her friends like the seat! She's be in it for a while with the back issues but we can flip forward in a month or so.

Her team now feels keeping some length of hair is a benefit. She's the first patient who hasn't had hair snag up on the pins. So neener neener boo boo to all the naysayers.

So that's been our summer. Plus adding number 9 still, adopting these two goofballs and all the rest.

Cania
July 31st, 2014, 05:12 AM
I've just spent a good chunk of my morning reading through this thread. MandyBeth, I'm now convinced you are neither man nor woman but an angel sent to give all these children a second chance at the life they should have had... while making the rest of us look bad! I was seriously in tears reading some of this.

Best wishes to you and your family. I am so excited for your big girl, she'll be in my thoughts on Tuesday for sure.

butter52
July 31st, 2014, 06:59 AM
I've just spent a good chunk of my morning reading through this thread. MandyBeth, I'm now convinced you are neither man nor woman but an angel sent to give all these children a second chance at the life they should have had... while making the rest of us look bad! I was seriously in tears reading some of this.



ABSOLUTELY

Im in shock and crying hahahhahaha OMG MB you are an angel.

Also I have no idea what a HALO is.

lapushka
July 31st, 2014, 07:14 AM
Great that the HALO can come off. She'll be in a brace, but I bet that's going to be a bit "easier" on you guys, and on her. Wishing you all the best!

embee
July 31st, 2014, 10:45 AM
Ha! She's gonna make it! :) This is great news - and it's really cool about the hair. Hahahaha! Neenerneener indeed. I hope you got *plenty* of pictures as this is a huge thing in her life. And more pictures when it comes off and there she stands with just the brace and collar. Whooot!

She's going to take a while to be walking without High Guard - and probably a good thing, until her muscles readjust. I remember well coming out of my brace and having a psychological fear that I would break in half, snap. Of course it didn't happen, but the mind is a funny thing. But my exercises were essential.

Balloons and fireworks! :) And a toast to one spunky kid and fab family. :)

MandyBeth
July 31st, 2014, 08:36 PM
No way am I an angel. I'm hell on two feet with a hellhound companion. I like it that way.

http://m.kidshealth.org/parent/question/medical/halo_brace.html This has basics on a HALO. It's been a long few months, but she's made it.

She can walk "normally" if asked. But this gear is heavy, she can't move any part of her spine or neck in the gear, it throws her center of gravity way off and she's top heavy. So high guard it is. It'll be a long term effort, the bracing for scoliosis won't help much plus that surgery. But that's what PT/OT are for. None of the doctors are concerned, so other than general Mommy worrying, I'm saying ok. Granted, there's life long impacts as she'll lose spinal mobility to an extent. But she'll have a 90% normal life post surgery, vs very severe life threatening crap that would kill her before 18. We'll take the 90% happily.

Yup, got a bunch of pictures these last months, we'll be getting more. Plus she's got a reserved seat with our friend at any nearby concerts. We've already got some planned. I have two little girls who are extremely excited about one. I'm going to be dealing with glitter in curly hair again.

butter52
August 1st, 2014, 12:19 AM
Ugh I thought it was a spinal brace, didnt know it even went up to the head.
Warrior girl you got!

Mandy, if Hell is giving a chance to children and giving them tools for life, HELL BE IT EVERYWHERE! i really admire you.

Sagi1982
August 5th, 2014, 05:25 PM
I admire you and your little girl. :flower:

lapushka
August 5th, 2014, 05:36 PM
She can walk "normally" if asked. But this gear is heavy, she can't move any part of her spine or neck in the gear, it throws her center of gravity way off and she's top heavy. So high guard it is. It'll be a long term effort, the bracing for scoliosis won't help much plus that surgery. But that's what PT/OT are for. None of the doctors are concerned, so other than general Mommy worrying, I'm saying ok. Granted, there's life long impacts as she'll lose spinal mobility to an extent. But she'll have a 90% normal life post surgery, vs very severe life threatening crap that would kill her before 18. We'll take the 90% happily.

That's some good news! :D

MandyBeth
August 16th, 2014, 07:47 AM
Well, she's just a normal kid these days. She's helping with the honey bees, loves the chickens, trots along behind the rest of the crazy pack of kids.

With limited hair washing, the excess gunk mostly stopped, she's still needing to wash daily but conditioner only is fine. So she's getting more ringlets vs waves. Plus her hair is now almost all purple except for a few bits of lime green. She likes it.

So no real update besides life is back to some degree of normal.

truepeacenik
August 16th, 2014, 03:48 PM
I hope she has a great time at the concert. You ALL deserve a party evening.