I got the chance to talk to the people at Scottish Rite yesterday.
They said that the MRI shows an osteochondral lesion...go on kids, go look that up...basically it means that some of the cartilage that covers the femoral head is worn, probably because of the mis-shape of the bone, and because it's worn it's causing pain...just like old people arthritis.
They want to do a Hip Dislocation Surgery...which is exactly what it sounds like...to look at the femoral head to see if something can be done to cut into and reshape the femoral head. Once it is a better shape they can smoosh the cartilage back on there so that it covers where all the pointy parts were so that everything is cushy and comfy again.
Okay, so maybe I'm paraphrasing a bit...
There are some big old answers to prayer if this is the surgery that they go with. The anticipated recovery is much better than we had hoped. Sounds like full crutches for 6 weeks and crutches for long distances and as needed for about 3 months...but then she should be good. No wheel chair. No walker. I asked especially because she does NOT want to be in a wheel chair if possible, apparently the fascination has completely worn off on those modes of travel.
That's all the news that is news. I only talked to the nurse, as her doctor is out of town, so we still aren't positive this is the final surgery. We won't have another appointment until May 13th. Beanie is a bit disappointed with the date being so late because it may mean that she will be unavailable to compete at the state level with her 4-H Food Challenge team at the beginning of June...but we will see. It would be a disappointment for sure...but to get this over? Oooh...that would be so good...
The Winning Dish - Poached Egg Surprise with Herb Crusted Onions
Seriously, I've written at least six beginnings and accidentally dumped two started posts.
I suppose I should begin by saying that we went to Scottish Rite again yesterday to have an MRI on Beanie's right hip. I should also say that at this moment we know absolutely nothing.
As I stare at this blank page, fingers poised over the keyboard, I find that I've forgotten what I've actually told you. I think of the audience for the blog as different people than the audience/community that is Facebook. I know that you are by and large the same people. I find myself writing on the blog for different reasons. I actually write here for my family mostly. It's funny, in a way, I write for my grandmothers, both deceased, who did read it. I know that for a long time I had a few friends that were just bloggy...I don't even know who I'm writing to anymore. Maybe you all know this already. I do know that I write HERE to find it again. This is the closest thing to a memoir that I may have.
Anyway.
Have I told you that I'm divorced? It's been two years and 5 months since anyone has called me a wife.
Have I told you that Bean is almost 16 now and pestering me to let her drive MOST every time we leave the house?
Have I told you that Bear is an incredible just-turned-twelve-year-old who still cracks me up most of the time and who has become such a great hair stylist/make up artist that I have to check her before I plan to leave anywhere so that she doesn't LOOK like a 24 year old...because she's 12, darnnit?
Have I told you about my baby, Monkeyface? Do you know that she is a fish tank owner and drawer of many things and is one of the best huggers on the entire planet?
Have I told you that I have a ten month old gigantic puppy that I've named Teddy the Wicked?
Have I told you that we are happy most days? Finally.
I don't know that it matters. But for the record, y'know, maybe understanding my viewpoint today might help me (us) to understand where I am should you be reading only the Legg Perthes posts.
So over the last few months Bean has been having some increasing trouble with her right hip. It started with a pretty awful locking incident when we were on a family trip to Arizona last July (2014). Then the girls went to Colorado with their daddy in October of 2014 and Beanie had quite a few problems that she "dealt with herself" because she's a teenage girl who WON'T bother her father. I wish she had because they hiked the WHOLE trip and she didn't tell him. He would have chosen differently had he known.
Sometime around Christmas, it was getting too much for her to handle alone.
After I knew what she had been dealing with, I called, got an appointment for the standard visit, X-Rays, conversation with our doctor etc. That was a couple of weeks ago. At that visit, the bones looked about the same, meaning that more than likely something has changed with the soft tissue. Perhaps a tear or some other damage. It is finally time to explore a surgical option to address the many issues of this hip.
I count March 7, 2007 as the beginning date of this disease for us. There was some stuff before that, but March 7, 2007 was when we had a diagnosis of Legg Perthes in the left hip. March 7, 2009 is when we had the diagnosis of Legg Perthes in the Right hip. She did a photo shoot back then in the very same room that we were in yesterday...same baby doll, same little pretend MRI.
Today is March 3, 2015...we are getting pretty close to 8 years of this. This is only the second time since that first diagnosis that we've been in a position to consider surgery. The first time we considered it was within the first few months of diagnosis. It was terrifying back then.
Now, to a certain degree, it's about time. Beanie at 15 is not the same person that Beanie at 7 was. She has grown into an incredible young woman. She always was, but chronic pain has shaped her differently than anyone that I have ever known.
Don't get me wrong, she's still a teenaged girl with all her silliness and crankiness. She still argues about things that are pointless.
But she is calm, and ready, and unafraid (mostly). Or, at the very least, knows how to stick her chin in the air and carry on...Oh, to be more like her. Maybe when I grow up. ;)
The MRI was yucky...and okay. They had to inject a contrast dye directly into the hip. They also injected her hip with pain killer and then a further steroid that should kick in in a day or two. BUT...the doctor (whose voice reminded both of us of Jane Lynch, so much so, I had to look at her face when she talked or I couldn't concentrate) told her that no matter how much pain reliever they give her, "bones don't like to be poked" and that it would be "uncomfortable". Beanie said that was the only part that really hurt.
Leg Perthes kids are BEASTS when it comes to pain. Seriously. If SHE says it hurts...it'd put the rest of us on the floor cryin like a little girl. I don't want to know what "REALLY hurts" feels like.
The only other part that was hard was being still. They were dealing with that Right hip, but she's also got that Left hip that doesn't like to be held completely still...and so that obnoxious thing, not to be ignored, "locked" up while she was laying there. When she told the tech, the tech said that she couldn't move it without starting over. Given the choice to move and begin again or be still...Beanie toughed it out.
BEAST, I tell you.
So that's where we are this morning. Waiting to see what's next. I'm struggling to let her deal with it all as an almost-woman-growed while still feeling very much like a momma-bear. I wish I could say that I was completely at peace with whatever may come...but let's be real, shall we?
If you are praying, and I hope you are, pray that we get the "good" answer. I don't know what that is, for me the one that causes the least pain and the quickest recovery...for her...she wants to be able to run...play softball...ride a horse...be a "normal" kid...so the one that FIXES that stuff. I'm not doing the research that I did originally. I just don't have it in me. Maybe I will once the options are all on the table, but for now, I'm riding the 8 year relationship we have with our doctor and the trust that my Lord, who has been with her from the very start, will lead us to the next place. I'm trusting He will give her the stamina to survive the pain and recover...and that He will provide the strength for me to be able to support her physically should she be non-ambulatory.
I'll keep you posted.
There is no good place for this in this post, but Bean and I had some
time to ourselves yesterday so we decided goofing off with a song that
we've been playing with for awhile would pass the time. Like I said,
this is a remembering place...I want to be able to find it again, for
me.
So that child...you know the one...with the funny hips, that drives me crazy? Yeah, her. Well, since November she has been Sah-wimmin'. And swimming and swimming and swimming...
Through the winter it was 2 hours a week...but since June it's been every single day for an hour. She has a great coach who, understanding the implications of these hips, in May, INSISTED that she MUST swim every single day she could this summer. He has also been saying all summer, "You should go to a meet...you can compete...". To which she has replied, time and again, "I can't...I don't want to...I'm not ready"
Well, she changed her mind.
And for the first time in her life, ever, she competed at swimming today. She didn't win the event...but she gave some definite competition...and the best part? She WANTS to do it again. I call "VICTORY".
Aaaahhhhh...Scottish Rite. Nothing quite like Scottish Rite. Fabulous hospital. Fabulous doctors. Nice, new cafe. Lovely art. And place whose very name renders all my strength and courage into gelatinous goo.
But they make us come. They make us have X-rays.
They make us wait. A.LOT.
We often get very bored...and sing louder than we should...(please note the bend-i-ness of that child's left leg in this next picture.)
Sometimes I even push Bean across the floor on the very-speedy-doctor's-stool...I ALWAYS make sure to look the other way in the doctor comes in...wouldn't want him to think that I, too, was bored. Bored enough to put my very grow-up feet on her hiney and SHOVE her with all my might across the room so she can feel like superman for a moment...(alas, I didn't get a picture.)
Eventually, they come in and tell us what we want to know...
That her left hip has rounded the corner...after 2 years and 7 months there is some growth there...WOOOOOOOOOOO HOOOOOOOOO!!!!! And her mobility is great in that leg. It ALMOST moves normally...and you'd have to MAKE her do something to prove that it doesn't move normally for you to be able to see it.
That her right hip is still in the fracture stage and it's GOING to fracture pretty close to the same amount that the left did...it's heading toward that C status that means 50%...all I can really say about it is "PRAISE GOD for growth plates!!" Apparently it can't fracture much further than the growth plate, so I, for one, am glad she's young enough to still have them. The mobility in that hip isn't GREAT, but is well within normal ranges for the fracture stage...and I will say, so much better than it was in May.
Having spent the last 2 years and 7 months looking at her left hip...this right hip is breaking down FAST! It's hard to tell you exactly HOW close the two are in the digital X-ray that they wave in front of me...but between the growth on the left and the break down on the right, the femoral heads look to be within a couple of millimeters of one another in size. Now, a couple of millimeters is still quite a big difference when you are talking about break down or growth; but where the left femoral head looked like an orange rotting as it broke down (you know slowly diminishing)...this one looks more like someone took an electric sander to it. Sorry for the heebie jeebies that visual might have caused.
AND they made us give back the walker and the zoomy pink wheelchair. Now to be fair, we haven't used the walker in a couple of months. And the wheelchair only really gets used at Walmart and Costco. And, I really do have to say, they did offer to let us have it until they could order us one...so it's probably unfair to say that they MADE us give it back. But we don't have it anymore and we left it there...sooo... They do think she is stable enough to go without it most of the time...(sigh)...and this really is a good thing. A VERY good thing. If only I could get my irrational fears and "what ifs" to pipe down already.
So there it is. The event that I let wreck me on Sunday...the one that made me burst into tears turned out to be not such a big thing. My head knew it was gonna be okay...that we would deal with whatever came...my silly ole tear ducts just didn't get the message. Just keepin it real.
She's good. She's still broken...but her body is doin just exactly what they said it was gonna do...and we don't have to go to that wonderful (terribly stressful) place again for another six months...God willing and the crick don't rise.
Yesterday, we decided that it was time for Beanie to have some new tennies. The heel lift that she wears in her left shoe makes her outgrow shoes much faster than ever before.
So after lunch, I took Beanie and Bear shopping. Monkey Face went home with Daddy. After trying on shoe after shoe...and agonizing over the increasing ugliness of the choices, we came across those little pink Converse. I thought those would work, and I have always thought they were cute. And I know we are no longer IN the 80's but y'know, retro is cool.
So I went in search of bigger Converse. Well, of course, NOWADAYS, the girl Converse are low top (at least in this store). We tried them on, hoping against hope...Boy, were they cute...but to no avail. Bean's heel-lift is a 12mm which pretty much puts her right out of the top of most shoes and this was no different.
So before I allowed tragedy to reign...I thought..."Hey, maybe there will be something in the boys section...I mean c'mon, Converse are Converse, RIGHT?" So off we trudge with Beanie making those, "Don-wanna-wear-boy-shoes" faces. Come to discover, old mom is right, Converse ARE Converse...and black is cool.
Back to our trying on spot...I stuffed the heel lift in there...and then I sat cross-legged on the floor dealing with the unlacing and re-lacing that comes with a new set of Converse on a kid who can't bend her legs.
You should have see her face when she stood up. Positively beaming. And then she cantered about the store..."Mom, MOM, my heel lift doesn't slide in these...I don't feel like I'm going to fall...Mom, I LOVE these"..."yes, dear, now come over here and shhh, people are staring"...No, I didn't really say that...I thought it a teeny bit, and then got over myself.
Anyway, one look and Bear wanted those EXACT same shoes. Never mind that she NEEDS sandals...no, she was having the same shoes as Beanie. I caved. I am a child of the 80s who never got my very own pair of Converse...I borrowed a pair from my friend...it wasn't the same and frankly, it makes me weak in these situations.
So then came the next difficult portion...finding a 13, wait, no a 12, oh wait, you look like a duck, maybe an 11...in black. There was a black one with flames that BOTH of the girls decided was too boyish...I'd have had them...flames are cool. Anyway, in time the proper sized black all-stars were procured.
Of course, they couldn't have matching shoes and leave Monkey-Face out. My kids are considerate that way. And determined. "Mom, just think of how she would feel...oh, Mom, pa-lease, look at how cute these pink ones are...C'mon Mom, you know she loves pink...Plllleeeeeeesssssseee!!" So what happened? I don't know why you ask...you can see the picture right there...I melted...just like a marshmallow in the microwave. Just sad.
They tried to talk me into getting a matching pair myself. They were so cute, searching up and down for just the right shoes for mom, while I, dutifully searched for the new pair of sandals I actually needed...and they found some pink ones. But I was strong. Number one they were low tops...not my favorite...AND they weren't the plaid ones...if they had been I'd have been lost.
So for awhile, you'll be able to recognize me around town...I'll be the one with the herd of Converse traipsing behind me.
Our trip was decidedly pleasant. The check up portion was pretty good. We had a new "resident" "fellow" or whatever they are called. He was so cute with Bean. He had her at "Hello, you must be the famous Sarah Hamlin I've heard so much about"...and just kept her charmed from there. It helped that he was young and pretty...she notices that stuff, now that she's 10.
Anyway...the X-Rays were just ugly. I ordered them and will post them when they come (here are the last ones I posted)...but suffice to say...the left has a little regrowth but not much...and the right is definately breaking down. On the upside, her left hip has even better mobility than before...as a matter of fact it looks almost normal to me (I caught her in criss-cross applesauce position with that leg yesterday...woo hoo), but what do I know???
The right. What to say about the right hip? Young Mr. Doctor probably said it best when he said, "That's an angry hip." It's very inflamed. She still has very limited mobility in it. As they were trying to rotate it they got very little rotation in anything but her whole pelvis because that hip is basically locked for the time being. But for now we are still just waiting it out. Our main doctor thinks this will calm down just like the other hip did as the break down progresses. He did say that at least at this moment the right hip seems to be maintaining it's height, so we are hoping that it won't break down as far as the left, but it still is too soon to tell.
As to how she is. Overall she's pretty good. We need the wheelchair on long distances...things like any store or the library...and she uses her walker for a while first thing in the morning...but she's starting to recognize when she'll be able to "walk it out" and when we've got a problem and need to get the ice going. That has been a huge blessing, because it's helped her to realize it isn't ALWAYS going to be terrible pain.
After the business portion of our trip, we got to go up to the children's ward and visit everyone. That was so much fun. All the kids and nurses and physical therapists called her by name and stuck around us the whole time we were there. We got to check up on their status and play a few games and go outside and toss tennis balls up against velcro "gloves"...even WITH the velcro gloves we legged folk got a run for our money chasing down the overthrows. It was fun and very funny and heartwarming. Beanie said that she wished she could come and play everyday...and in some ways I wish she could, too.
On to other news...she turned 10 on Wednesday. She is SO excited to be double digits, dontcha know. Bear says, "I won't be excited until you are TRIPLE digits!" Ain't sisters grand???
Well...remember I said that I blog on the upswing...this last week has not EXACTLY been an upswing.
We've been pretty busy with our standards...you know, homeschool, soccer, church, random photography endeavors...and dancing...there's been a fair amount of dancing...oh, and laughing...a good portion of laughing...
But we also have an appointment on the books with Scottish Rite next week. That always puts a rock in my stomach. Sort of like the test you didn't study for in high school...I've got a mixture of fear and dread going on...and it isn't exactly pleasant. I gotta tell you, this parenting thing...it ain't for sissies.
Her? She's just fine. Looking FORWARD to it, in fact. Hmmmmm...maybe I just need a tattoo...
Well, today marks 24 days from that most terrible day and 11 days since we've been home from the hospital...and I really think that I can say that Sarah-Bean is better.
Now, I need to qualify that better.
She is still sleeping a lot. I've made her lay down with me every day since we've been home...at first it was because I needed the nap, now it's because if I don't lay there, she won't close her eyes. Once she closes her eyes she is out for a couple of hours. This is out of what used to be the norm for Beanie. Perhaps this will settle when she finally catches up on her sleep or maybe this is just how her body is healing right now. I'm okay with it as long as I keep seeing the increased mobility AFTER her nap...and I am seeing that right now.
She still gets sore much more quickly than was normal in the past. She still gets cranky BEFORE she realizes that she is sore, but that cycle is pretty common place so at least I can see it coming.
I think the worst part for me is that she's really not ASKING to go out to play right now. She used to ask me many MANY times every day to go play...and I used to have to gauge how she was feeling, what the weather was like, who she was playing with, what time of day...oh and if the moon was in the 7th house...and then tell her yes or no. Now, she might ask once, if it's bright and sunny...so that is different and not better.
BUT...she is SO much better. We finally went to church again yesterday. She was able to get completely dressed except for her shoes and socks...she still can't reach her right foot. She also ARGUED with me that she didn't want to take the wheel chair...that she wanted to walk...um No. She ARGUED with me that she wanted to take the OLD wheel chair instead of the pink one for some odd reason known only to 9 year olds...again I said, "No." She TRIED to manipulate me with tears. Tears, over something silly, as we are trying to walk out the door is one of her favorite old past-times. She tried it long enough that I pulled out my old stand-by, "Knock if off or you are staying home!"
She's baaa-aaack!!! Praise the Lord!!
It says in the bible, in Philippians 4:4 Rejoice in the Lord always; again I will say, rejoice!
You know, I NEVER thought I'd rejoice in the sass. Weirdly enough, the Lord gave me back my girl during that 3 minutes of strife.
I don't know how long it'll take to get used to this new normal. I don't know that we'll have to get used to it...maybe she'll go back to her old Legg Perthes normal, she's making such strides right now. But normal, in whatever form, is returning, praise the Lord.
And she should get a chance to practice that attitude a lot because school starts today. Nothing brings out the angst in a 9 year old quicker than math or a writing assignment. Think I'll pull out both today, just for the fun of watching the show.
I know, I know, I've been promising more posts...the last one you got at the hospital said she was to be in traction 24/7 for 5 days...and now here she is at home some 7 days later and we're doing more traction here...what is GOING ON?
Alright, let's back up.
Saturday was when I wrote that post. But FRIDAY is when all that stuff happened.
Friday night she started having muscle cramps when we took the traction off, first her feet then her calves. By about 9 am Saturday, I'd had enough of THAT. I told the nurse, "look, at home I'd give her calcium/magnesium, I'd move her around a lot, I might give her tylenol or motrin, I'd take her out of traction, for awhile. What do you suggest?" She went and got us a banana and some milk and the doctor. This was our lady doctor (she is a Resident and a Fellow, and I don't know the difference...but she was the only lady doctor that I saw) and she agreed that we could go on traction 4 hours on 1 hour off. Sarah was VERY happy with that.
Having an hour out of traction was just lovely. It still only meant about 2 times per day during the time when everyone else was awake...the night time always messed us up because somebody always "forgot" to put her traction back on...shhhh...of course it was me...I only got about 3 hours of sleep most nights and unless the nurse woke me, I slept. After one nurse decided to put Bean back in traction by grabbing her RIGHT (painful) leg and flipping her over (lovely) I asked that they please just wake me...and most of them forgot.
Anyway, she used her 1 hour to visit friends around the hospital and to go outside and play.
Every evening at 8pm when all the kids knew she would be out of traction, they'd gather in our room and wait for her to get into her wheel chair and then they'd all go racing around the halls. It was funny to me. She was the youngest of the group, and they were all MUCH better with their wheel chairs, but they waited for her when she couldn't catch up, didn't crash into her when she made 90 degree turns in front of them and played hide and seek with an exuberance that masked the fact that there are only so many places you can hide in a wheel chair.
I have several pictures, but of other people's kids, don'tcha know.
On Sunday, we knew that we were going to have some child care issues at home. My parents were coming but needed a few extra days. So I talked to the doctor and told him that we would need to leave on Wednesday, but that we could come back Monday, if he felt that was necessary. He didn't, on the condition that she was doing well, no further pain.
There was no further mention of the 30%, but I did ask our Resident what the significance of that 30% was. That 30% ensures that the femoral head CAN tuck under the socket. So then I asked our physical therapist if Bean had 30% mobility and she said, "Well that depends...", on some of Bean's motions she has 30%, some she has more than 30% and some less, but because he didn't qualify WHAT had to be 30%, she didn't know for sure. And I still don't know today. But we are continuing traction at home because in the shorter doses it worked. Plain and simple. It helped with pain. It seemed to help with rotation. And if we can do it here, we'd rather that than the hospital.
On Monday, Bean had an MRI. It was MUCH less stressful for all involved than the first one. She was not sedated, I sat in the room with her, they walked her through everything. Later that day, they asked all the kids (and moms) on the playground if they would come do an MRI photoshoot for some literature they were making. Since Bean had just had an MRI, she said, "SURE"...and here is one of those pictures...the photographer is the guy in the PRIME photo location...
And this is the message that greeted all comers on St. Patrick's Day...written in my girl's own hand...
In my right mind, I consider myself a realistic optomist. Really thinking about it, I'm not sure that is how my nearest and dearest would classify me...I certainly have had many completely unfounded fears in my life. I've certainly been teased about my doomsday mentality on SEVERAL occasions. Even with those instances, I'm a pretty happy person and especially in recent years, I'm much MORE likely to look on the bright side.
So it's a little odd to be feeling absolutely fine one minute...thinking normal, random, benign, happy girl thoughts like "Wow, is it beautiful today or what"...to turn around all of a sudden, OUT OF THE BLUE, feel like I just can't breathe right now in this beautiful day.
We've had so many days in a row of laughing our heads off and then crying our eyes out. And it's hit EVERY one of us...well, Bubba doesn't cry much...but he does his man-cave thing.
If this is depression...it's not at all like the commercials, at least yet. It's more like the ocean...when it is calm...you can see the sand on the beach...you can float freely or kick hard, as you choose...you can see the kids around you and splash and laugh with them...the bad parts are like when you body surf and hit the wrong part of a wave that is too big and it rolls you a long way...where everything is a solid mass of water and bubbles and sand...you want to breathe but can't figure out which way is up...all you can taste is salt water and sand...and you land in a lump on the beach...trying to clear your lungs and eyes...a little more afraid of that ocean than you were 18 seconds ago.
Reality...Beanie is going to be okay. Whatever that means. Her normal may be completely different than other kid's normal, but this WILL settle. I know that with my head.
But my confidence has holes in it...and now and then I'll hit a hole and fall through.
If you wonder about the regularity of my blog...know that I blog on the upswing. I'm feeling pretty good this morning, nevermind how depressed this post makes you feel...
I'm going to try to get in a few more of the pictures from the hospital today, because tomorrow may be a down turn...it seems to be how I roll...
We got home yesterday about 1:00 pm and I have a few blog posts that I need to work on.
Still I thought I'd sneak in a quick one (no formatting or pictures), until I have time to untangle the mess we've got over here from momma being gone for 7 days. Thankfully Daddy was on top of everything, so it's really just restocking and regrouping with the kids.
Anyhoo...I'm stealing from an email that I wrote earlier when I say...
Sarah is "feeling" better...but she is still having a hard time bending at the hip...and the longer she is out of traction the worse this is getting. I don't know that we won't be back in the hospital in a flash, simply because the more stiff that hip is, the more chance we have of that nerve getting pinched again...plus...if it gets too bad she won't be able to sit upright, even in her wheel chair. Think about sitting straight up...your legs make about a 90 degree angle to your body...in hers, she's bending her lower back to be upright because (at least last night) her hip won't rotate.
The biggest roadblock is how fragile she is right now. I can't plan to do anything or be anywhere because I don't know that we won't have to go back into the hospital because of another pinched nerve or even just because she keeps getting worse.
I did take her to the chiro today with some positive change...although now that the hip is IN the socket the pressure is different...not worse just different than it has been. Our chiro ALSO wants us to figure out traction at home. Bubba thinks he has the hardware part figured out...and I think I have the foam boot thing figured out...so we are working to get that settled sooner than later. In case this sounds scary, go look at the picture again...it's not full traction we are talking about and at the hospital I did it every single time she went in and every single time she went out...I know the angles they were doing and I fixed the weights every time they fell off (yes, fell off)...so I feel pretty confident that we can mickey mouse something together that would be adequate.
Anyway, there is indeed more to tell...but these are the most current high spots. UNLESS something gets worse, we won't see the doctor again for 4-6 weeks. Here's to hoping it goes like that.
To those of you locally...thank you SO much for your support over the last few days. So many of you offered and helped with the little girls, visited us, brought us food (psst, Bubba and the girls ate ALL those lemon bars, Mr. Matt) and called just to say you loved us.
And to those that sent packages...MUAH! (that's cyber-speak for a kiss) You should see her little eye sparkle. She's working on the thank you cards now...so look for those in the mail...and save 'em will ya, someday I may want to make a scrapbook or something.
We really are so blessed.
To add to the blessings, my folks are going to be here sometime this weekend. Grandpa will drop off Grandma and do a few jobs in the general vicinity and then come back to us and either take her home or stay as long as we need.
Well, I talked to our doctor last night. Hmmmmm...
I think he and I are in conflict of what our final goals in this thing are...
I don't want an osteotomy... He agrees she's not a candidate for an osteotomy... CHECK
I want her to be able to move about a bit more...her back is getting sweaty and sore from the constant pressure...her legs are constantly bumpy with pressure marks of the foam boot... He said we can work that out... CHECK
I want her to be as pain free as possible while we ride out this first few months of Legg Perthes in the right hip...knowing that the first couple months can be painful and stiff enough as the hip errodes... He wants her range of motion to be a 30% before we leave the hospital.. UMMM...hmmmm...this is the beginning of our problem.
One of the ways to get her to 30% is to sedate her and rotate it while she's under sedation...this seemed to be a surgical option to me...but I need to ask again...if it's a simple adjustment situation, I probably wouldn't balk to badly...but it sounded more like under anesthesia, scoping and such...which doesn't sound like it's going to be LESS pain.
The other way mentioned was casting with a bar between her legs to put it at some angle for 4 to 6 weeks. Again...this doesn't sound LESS painful to this momma. Nevermind what it may mean for us as a family as this would be a situation that was monitored in the hospital...as in she wouldn't be coming home.
I need to figure out WHY 30%. I realized this morning that I didn't ask that question...please forgive me...I'm beyond tired. I'm pretty sure that she wasn't at 30% mobility for the first at least 6 months the first time around...but I could be wrong on that. It's possible that 30% has a much greater significance than I understand right now. As of this moment the Doctor wants us here until mid-week next week, at which point we will re-visit the options. He will not be here Monday or Tuesday so I'm hoping I'll get my questions answered before he goes out of town.
So, that's where we are.
I do need to say how very VERY blessed we are. Sarah is BORED...and uncomfortable but otherwise really good. She is not in any pain. She CAN walk to the bathroom, the only trouble she has is FIRST thing in the morning...then she is pretty stiff and needs her walker. There are much worse cases here...Kids who's problems break my heart, who make me realize just how blessed we are.
Keep us in your prayers...we still have a bunch to decide on and understand.
Here are some pictures from yesterday...We had a MESS o visitors...it was lovely...But I only got pictures of the first group...my friend Mrs. Mudd came with her two girls Guinevere and Ophelia (not their real names)...but Mr. and Mrs. Underdog (blog)and all their kids came too...JB from a few posts ago is their daughter.
Hmmm...well, not really. This has been a pretty uneventful day. A lot of waiting...a lot of sitting...A LOT of TV watching...A LOT. After this is through, I'm not sure that we'll EVER need to see another television show. I'm not sure I could even be tempted by Planet Earth...and I dig Planet Earth...
Sarah was so excited that she got to have to roommate. She's a sweetheart little girl who is recovering from hip surgery. They are getting to know one another and have been making me laugh all afternoon with their conversation and their dueling T.V. volumes.
So...here is the rig...
Here are the weights that are the traction part. She is wearing a foam boot that velcros around her legs...and there is a metal bracket on the bottom of the boot that connects to the weights via a thick string through a small pulley. Mr. Danny used some handy dandy scout/sailor type knots which he CLAIMS he could not teach anyone else how to tie to attach the boots to the string to the weights. She's not nearly as frowny as she looks in these pictures...she was trying to play a motorcycle playstation game and, well, she's not very good at it...ehem...AT ALL.
We still don't know a lot. Our doctor wants her in traction 24/7, except when she goes to the bathroom or during physical therapy. This makes her less than happy, especially at bed time (she's a side sleeper all the way). I know that as of this morning he wanted us here for the full five days...and we don't talk to him again until late afternoon/evening tomorrow so we won't know until then if anything is going to change.
This constant traction makes for interesting outings. Yes, I did say outings. They come in with a couple of nurses, unplug her bed and wheel the whole shebang wherever they wanna take her. The pictures above were taken in the Child Life center which is a really cool room full of all sorts of stuff. There are several gaming systems, a couple of computers and then just a TON of toys and interesting things...She tried to get me to untangle her so she could dress up...yeah right!!!
I did let her wear SEVERAL helmets...not EXACTLY dress up...but funny...
They also took us to the library/school room for a game party. Voluteers come to play games with the kids...there were probaby 15 kids and a MESS of grown-ups/young adults playing cut throat uno, connect four and checkers. I got my clock cleaned in checkers by a spunky 8yo and Sarah FINALLY won uno after 3 of the 5 players had been really close...and she did it from the tippy top of her bed, while they sat at a low table and handed her cards.
All in all, things are going well...I think I see more flexibility in that leg, but it's hard to tell for sure.
One other thing...I can't get to facebook so I hope you all followed me here...
Look what I found when I came down from grabbing a load of laundry.
Apparently the oatmeal NEEDED stirring within the 120 seconds that I was gone. I swear, I need to tie that girl to the chair.
Now, to be sure, she was scolded, and she is not allowed to unbuckle her seat belt without me in the room. But...I thought it'd make you all happy to see that she is FEELING better. Remember the whole 72 hours??? HAZAAR!!
Now onward toward mobility, eh?
I've found out that we are to be admitted at 9 am Thursday. I've found out that she can receive packages and such, just no latex balloons, mylar is fine...please send cards, notes or whatever. She could use your words.
I've found out that the address information is...
Texas Scottish Rite for Children 2222 Welborn Street Dallas, TX 75219
make a notation...for Sarah Elizabeth Hamlin
I've found out that I will have at least limited internet connectivity... I've found out that I will have a sleeping place in her room...
I still have NOT found out how long we will be there...we are hoping for a weekend release, but I'll keep you posted.
I've got some good news and some bad news. Guess I'll go with the good news first. Monkey Face has BEAUTIFUL round hip bones. The little stink didn't limp even ONCE today. Whatever, I'll take it...Thank you, LORD...for a little bug with perfect femoral heads. (There's a thank you I'll bet you never thought you'd hear, huh?)
On to other news.
It has been confirmed. Beanie has Legg Perthes in BOTH legs now. The incident on Saturday was "symptomatic" and evidentally something that is pretty common in LCP patients (sorry LCP=Legg Calve Perthes, the other name).
Weird enough, we were diagnosed exactly 2 years ago Saturday with the first hip. Seems March 7 is a red-letter day in this journey for us.
Anyhoo...once again our lives will change. At this moment we are preparing to admit Beanie into Scottish Rite later this week for a few days of R&R. Well, they call it physical therapy and bedrest...but tomato, tomahto. I'll be joining her, so we are lining up our childcare, preparing lessons to take on the road, preparing meals for the ones who are staying home so that they don't get stuck with PB&J EVERY night. There is much to be done...
I still really don't know much at this point. I don't know how compromised the right hip is right now and as always we don't know how bad it is going to get. I don't know if the nerve pain that she experienced has caused any lasting damage...there are some weird personal things going on. I don't know EXACTLY how long we'll be at the hospital. I don't know when she'll walk again. Scottish Rite wants her OFF her feet other than going to the bathroom (which is allowed with a walker) for the moment. We'll see how she responds to her R&R. I don't know if I'll have a bed there...or if I'll have internet access...
But we do know that it is definately Legg Perthes...and we do know that she got a new wheelchair on loan. It's hardly a consolation...but at least it's a really cool pink...
Below...our wheelchair and the new one that actually fits and is all zoomy from SR...
Okay, ya'll...the bird died last night...trying once again to lay an egg. Apparently domestic parakeets have "ISSUES" with egg laying...not enough light...too much light...not enough various minerals, etc. We thought we were going to lose her once before...so it's not terribly surprising...but it couldn't happen at a worse time for Beanie. It's getting to the point that I either need to laugh or I'm going to cry...and crying is not an option today...
On that note, I've decided to sing the blues...
Feel free to sing along...
Got one kid a'limping...one in a wheel chair too... So much fuss and trouble...now the bird just died too... I got the blues (insert guitar riff) I got the Legg Perthes, nerve pain, bird died egg layin BA LOOO HOOOS
I got the blues...
Goodbye Chicken-the-bird...we loved you very much...
Actually to be fair, something started happening Friday night, 11:00 pm.
Friday morning, Beanie woke up RARING to go. It was BEAUTIFUL outside...SHE got to wear shorts...SHE wanted OUT of the house. So off we went. She wanted to go for a walk, a big walk at a local nature museum.
I said, "OKAY...let's do it". We went...we renewed our year membership (as we do every spring).
But along the way, I noticed she was stopping a lot. She was slowing down and showing the other girls things that were interesting so they would slow down...
She went from walking with them, to seriously lagging behind...
But she made it...still pretty much smiling...but quiet.
When we got home, everyone layed down for a bit...then Bubba came home early from the training he'd had all week. The girls wanted to play with him. For some reason, Bean didn't want to play soccer, which was odd, as soccer is THE game right now. She wanted to throw the ball...so he threw the ball with her.
At some point during all this, I suggested that MAYBE she was a little sore...MAYBE a bath would be in order. At first she poo poo'd this notion...but by about 6pm, she said she thought that was probably a good idea. Hmmmm...
The rest of the evening was uneventful...we ate, talked, watched some TV, had story time and went to bed.
11:00 pm...Bean woke up in HORRIBLE pain. She couldn't move her right leg and any movement of either leg caused pain to "squirt" down her right thigh.
I could give you a blow by blow...but I won't. Suffice to say that NOTHING we tried helped for very long. By 8:30 am she'd had 4 epsom salt baths, 2 doses of motrin, Quercitin, various massages, a heating pad, rice pillow, 3,457,239 ish position changes and virtually ZERO sleep.
Around 9:00 am I started calling all the health care professionals I knew...Scottish Rite...my pediatrician...my family doctor...my chiropractor. None were available. All said, "in case of emergency call 911". While that was definately a consideration...the Lord had another plan. See, I have a neighbor who is a chiropractor. His family are our good friends and fellow homeschoolers that I've spoken of before on this blog. I called on the outside chance that Dr. Bo was still home.
He was, and when he heard how bad Beanie was he raced over. For the rest of the day he was here about every 2 hours. He helped us move her safely. He helped adjust her gently. He counselled us on helpful pain management for nerve pain...and he is the one that figured out that it WAS nerve pain.
See, we'd been operating under the assumption that it was muscle pain...for muscle pain WARM is good...for nerve pain COLD is good. Now warm FELT good at the time, but it was bringing more and more inflamation to that nerve and, let's just say it's a very good thing he got there and corrected us when he did.
It's hard to explain how much pain she was in. My words fall phenomenally short. I guess I'll just say this, I now know EXACTLY what the words "screaming in agony" mean...and I'll tell you what...you don't WANT to know.
It's hard to explain how helpless we felt, watching her shake and scream in pain...not being able to touch her for fear of making it worse. Praying that she would sleep, only to watch her fall asleep and as soon as her body relaxed have her jerk awake with a scream because the weight of her body relaxing triggered that nerve once again.
It's hard to explain how in love with Bubba I fell once again when I watched him help his baby girl...as I watched him gently lift her and hold her dangling...the only position that didn't make her scream. As I watched him sit beside her helplessly while she clutched him, crying.
But it is NOT hard to tell you how OVER THE MOON I was this morning when she woke up and that nerve was no longer sore to the touch. When she was able to use the bathroom in private and was able to take the two steps into my arms from the toilet.
God did a miracle over here and you all need to know it. Go ahead and tell me she made it through the inflamation cycle...I don't care how it happened. I just know that she smiled today...she didn't cry even ONCE. I knew this morning when I woke up that I needed to be with her...and that if she was better SHE needed to come to church, however I could get her there.
When she finally woke up at 7am...I RAN to her. She didn't move...she said, "mom, I don't think anything hurts." I said, "Really?"...and then she started poking all the parts that we couldn't touch yesterday. Then I started moving her feet and her legs. Then I "walked" her to the bathroom...and she was right...she still couldn't walk unassisted but the majority of the touchable nerve pain was gone.
Technically, Dr. Bo said that something was wrong with her sacrum . He also said that the pain was firing along her lateral femoral cutaneous nerve. Why? I don't know. Sometime this week we should know...but for today all I know is that I spent from 11 pm until about 3 pm the next day afraid to touch my baby because I didn't want to hurt her anymore...so what's that?? 16 hours?...and from 3 until 9 watching her get better and better...so 6 ish hours...so 22 hours total terrified she'd taken her last step...and today she was given back to us...not perfect but wonderful nonetheless.
We have an appointment with Scottish Rite this week for BOTH Bean and Monkey Face. Beanie will be attending in a wheel chair for the first time. And she will be in a wheel chair NOT because of her Legg Perthes hip directly. They are going to have to tell me why.
Until then, I'm praising the Lord. I'm praising Him that Dr. Bo was there...that he loves her and that he was so kind. I'm praising Him that she feels so much better (the inflammation cycle can last up to 72 hours, so I'm expecting her to feel better still). I'm praising Him that we OWN a wheel chair. (that's a story for another time, but we do NOT own a wheel chair because our daughter has Legg-Perthes...the wheel chair pre-dates Legg-Perthes by AT LEAST a year.) I'm praising Him that we already HAVE an appointment on the books with Scottish Rite...I don't have to call and wait, we're in and right soon. I'm praising Him that she DID go to church this morning and she DID get to feel human for a couple of hours. I'm praising Him for how many people told me they loved me today...told me they WERE praying, had prayed, would be praying...people that didn't know the whole story, but felt like today was the day to say it.
