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.
See ya around...
Monday, March 30, 2009
Guess what
They've all slept the last two nights in a row.
Guess what else...they've all taken at least a 2 hour nap for the last week.
See ya around...
Guess what else...they've all taken at least a 2 hour nap for the last week.
See ya around...
Tuesday, March 24, 2009
Sleeping in my house...
Sleeping in my house has become something of a timed sport.
Bear, as you might recall, is 6. I have found that so far all my children go through a spurt between 5 and 6 where they have a LOT of dreams; good, bad and nightmarish. These dreams cause them to wake their mother, a lot.
Beanie used to have these dreams and in the spirit of not waking the whole household, would walk into my room and stand about an inch and a half from my face and just WAIT. It wouldn't take long for my Spidey sense to kick in and the feeling that something was in my space would cause me to open my eyes to a GINORMOUS head in my line of sight. This would, of course, cause me to rear back and utter whatever guttural sound comes from a person who has just awakened to a terrible sight...which would then ensure the wakefulness of Bubba and usually Bear, who was still nursing at the time. Yes, indeed, the whole household awake in a thrilling fashion.
Bear has her own style. She's been having these dreams for a goodly amount of time at this point. She's past the screaming in her bed until I come. She is mostly past the whimpering until Beanie invites her into her bed. Now, Bear stomps into my room and sneaks into our bed wherever she fits. Last week it was on Bubba's side. Last night, there was room on mine.
She doesn't wake us, she usually just fits whatever space is there without touching us, however, last night she did not know what to do with my extra fluffy pillow, so she put it on her head. She must have been there some time when I put my hand out (on the bed, I'd thought) to turn over and leaned (hard) on her person. Imagine the rearing back of that instance, when the pillow, which was all I could see, made a guttural sound of it's own. So here we are, startled, Bear trying to catch the breath I pushed out of her. All of us awake and aware of each other in the bed and then trying to go back to sleep.
Bear, being awake, could not resist touching me, just barely, with her toes. She didn't do it constantly, just consistently as I was falling asleep. Finally, being wedged between two of the warmest people in the house, on the warmest night we've had so far, I suggested that MAYBE Bear could go back to her bed because I was too hot. In typical, logical Bear fashion, she said, "Oh no, momma, we can just uncover you...that'll be fine."
hmmmmm...
THAT'LL BE FINE???
Well, as you may have guessed, I kicked her out. Now, I did walk her back to her room and tucked her, as needed, into her bed...and then proceeded back to my much LARGER space to fling my covers around as I thought best.
A short time later, we heard Beanie crying. So, I found my glasses and FLEW in there thinking she'd gotten stuck on one side or the other as happens when you have a hard time moving your own legs. Nope, another bad dream. This one that *I*, her mother, told her to run away and never come back. Hmmmmm...I hugged her and kissed her cheeks and told her she had a silly head...and suggested that maybe she and I could run away and find someplace with two beds and nobody to wake us until morning.
Course, at this point it was a little after 5 am and if I wake up anytime after about 4 am my body thinks it's time to party...so that is why, at 6:34 am, I am here, writing to you, dear reader...and have been up for over an hour.
Now, lest you think this is an isolated event...let me clarify. While Bean and I were at the hospital, Bubba only slept one night alone. One or the other or both children woke with bad dreams every other night. That memorable Friday night that set off this difficult time for us?? Bear was the one who FLEW to my bedside because she'd been in bed with Beanie when it all started, due to an earlier bad dream. Bear has been waking up for about 6 months pretty regularly...but it's been MUCH worse since that Friday.
But this curse of wakefulness seems to be farther reaching than I thought. You see, my parents arrived Sunday. Apparently, for the last few times that they've come, my mother doesn't sleep well the first night she is here. Now, she doesn't have bad dreams...no, her problem is that the bed is SO comfortable. Something will wake her in the night and instead of falling back to sleep she lays there pondering the wonder of my comfortable guest bed.
So I guess the bottom line is this. Feel free to come visit me. Allow me to feed you, play games with you, watch T.V. with you, entertain you mightily. But consider carefully a suggestion to "sleep" over, because due to forces beyond my control, that is not possible here.
See you around...
Bear, as you might recall, is 6. I have found that so far all my children go through a spurt between 5 and 6 where they have a LOT of dreams; good, bad and nightmarish. These dreams cause them to wake their mother, a lot.
Beanie used to have these dreams and in the spirit of not waking the whole household, would walk into my room and stand about an inch and a half from my face and just WAIT. It wouldn't take long for my Spidey sense to kick in and the feeling that something was in my space would cause me to open my eyes to a GINORMOUS head in my line of sight. This would, of course, cause me to rear back and utter whatever guttural sound comes from a person who has just awakened to a terrible sight...which would then ensure the wakefulness of Bubba and usually Bear, who was still nursing at the time. Yes, indeed, the whole household awake in a thrilling fashion.
Bear has her own style. She's been having these dreams for a goodly amount of time at this point. She's past the screaming in her bed until I come. She is mostly past the whimpering until Beanie invites her into her bed. Now, Bear stomps into my room and sneaks into our bed wherever she fits. Last week it was on Bubba's side. Last night, there was room on mine.
She doesn't wake us, she usually just fits whatever space is there without touching us, however, last night she did not know what to do with my extra fluffy pillow, so she put it on her head. She must have been there some time when I put my hand out (on the bed, I'd thought) to turn over and leaned (hard) on her person. Imagine the rearing back of that instance, when the pillow, which was all I could see, made a guttural sound of it's own. So here we are, startled, Bear trying to catch the breath I pushed out of her. All of us awake and aware of each other in the bed and then trying to go back to sleep.
Bear, being awake, could not resist touching me, just barely, with her toes. She didn't do it constantly, just consistently as I was falling asleep. Finally, being wedged between two of the warmest people in the house, on the warmest night we've had so far, I suggested that MAYBE Bear could go back to her bed because I was too hot. In typical, logical Bear fashion, she said, "Oh no, momma, we can just uncover you...that'll be fine."
hmmmmm...
THAT'LL BE FINE???
Well, as you may have guessed, I kicked her out. Now, I did walk her back to her room and tucked her, as needed, into her bed...and then proceeded back to my much LARGER space to fling my covers around as I thought best.
A short time later, we heard Beanie crying. So, I found my glasses and FLEW in there thinking she'd gotten stuck on one side or the other as happens when you have a hard time moving your own legs. Nope, another bad dream. This one that *I*, her mother, told her to run away and never come back. Hmmmmm...I hugged her and kissed her cheeks and told her she had a silly head...and suggested that maybe she and I could run away and find someplace with two beds and nobody to wake us until morning.
Course, at this point it was a little after 5 am and if I wake up anytime after about 4 am my body thinks it's time to party...so that is why, at 6:34 am, I am here, writing to you, dear reader...and have been up for over an hour.
Now, lest you think this is an isolated event...let me clarify. While Bean and I were at the hospital, Bubba only slept one night alone. One or the other or both children woke with bad dreams every other night. That memorable Friday night that set off this difficult time for us?? Bear was the one who FLEW to my bedside because she'd been in bed with Beanie when it all started, due to an earlier bad dream. Bear has been waking up for about 6 months pretty regularly...but it's been MUCH worse since that Friday.
But this curse of wakefulness seems to be farther reaching than I thought. You see, my parents arrived Sunday. Apparently, for the last few times that they've come, my mother doesn't sleep well the first night she is here. Now, she doesn't have bad dreams...no, her problem is that the bed is SO comfortable. Something will wake her in the night and instead of falling back to sleep she lays there pondering the wonder of my comfortable guest bed.
So I guess the bottom line is this. Feel free to come visit me. Allow me to feed you, play games with you, watch T.V. with you, entertain you mightily. But consider carefully a suggestion to "sleep" over, because due to forces beyond my control, that is not possible here.
See you around...
Sunday, March 22, 2009
Catch up post...
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...
Seems a great ending to me.
See ya around...
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...
Seems a great ending to me.
See ya around...
Saturday, March 21, 2009
Depression in waves...
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...
Just keeping it real...
See ya around....
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...
Just keeping it real...
See ya around....
Thursday, March 19, 2009
We're Home...
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.
Thank you so much for your continued prayers.
See ya around...
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.
Thank you so much for your continued prayers.
See ya around...
Saturday, March 14, 2009
A little discouraged this morning...
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.
This is Ophelia, Guinevere and Sarah Bean
And here they are WATCHING TV...
See ya around...
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.
This is Ophelia, Guinevere and Sarah Bean
And here they are WATCHING TV...
See ya around...
Thursday, March 12, 2009
So you wanna be a rockstar????
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...
Talk to you more tomorrow.
See ya around...
C'mon everybody...Here we GOOOOOOO...
Alright...it's just about time to go...
I'll talk to you all later today from the "hot spot" in the hospital...wherever that may be.
See ya around...
I'll talk to you all later today from the "hot spot" in the hospital...wherever that may be.
See ya around...
Tuesday, March 10, 2009
Scottish Rite Information...
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.
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.
Monday, March 9, 2009
Back from Scottish Rite...
Well here I am...back from Scottish Rite.
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...
See ya around...
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...
See ya around...
Didja ever wanna sing the blues???
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...
See ya around...
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...
See ya around...
Musical Monday
This one right here...this is how I feel today...
And no, I don't know how to imbed it...just click it.
See ya around...
And no, I don't know how to imbed it...just click it.
See ya around...
Sunday, March 8, 2009
Of Agony and Rejoicing...
Yesterday, something happened.
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.
Thank you, Jesus...Thank you.
See ya around...
Friday, March 6, 2009
Birthday fun!!!
Well, hmmm...Bear's birthday came and went in mid-February. I even took pictures...but the problem you see...well the problem was that we were sick...and by we, I mean each of us in turn. I kept meaning to plan the party...but everytime I said to myself, "Okay, Stack, today is the day. Invite the folk. Call the place. Let's get 'er done"...someone would have a fever. Bear did it to me TWICE, four days apart.
Now lest you feel sorry for me for all my woe...let me just say, NOBODY was THAT sick. Seriously, we had a day of fever and fatigue and then nothing...and really the fatigue wasn't even that big a deal, Beanie didn't even slow down on school...but she DID take a nap (shhhh...don't tell anyone, it is apparently the utmost disgrace for a 9 year old to 'rest her eyes').
All that to say, I have a least a dozen really good excuses why Bear's birthday spanned 8 days. See, we have a rule...on anyone's birthday, we don't do school...so we got her birthday off. Then, of course, because it was the weekend and we wanted to give her the choice, she chose Sunday dinner out...we went to Friday's and they sang and it made her little eyes sparkle. But wait, there is more.
I, finally, the day OF her birthday said, "Okay, nobody is sick, whadaya wanna do...quick??" Well there was some thought of a tea party (the tea party place closed, bummer), a sprinkler party (ummm...hello, February, time of completely erratic temps in Texas) and Chuck E. Cheese. I've gotta tell you when she said, "I want a Chuck E. Cheese party", I actually felt my legs go cold. But then I thought, hmmm...maybe during the week it'll be okay.
So I emailed a couple of our closest homeschool friends, got on to the Chuck E. Cheese website and scheduled the party for 11 am on a Thursday. It was actually dreamy. I had one of our favorite almost teenagers come to help wrangle kids...we had 15 kids that ranged in age from 3 months old all the way to the 12 year old...most in the 2-9 range and 5 adults. The kids ran and played and got tickets and ate the sad little cake I brought and met Chuck E. Cheese.
And I didn't have to do the dishes, except the cake pan...which I felt was the best part.
The following picture is of the FIRST cake I made. We decided that artificial colors were banned for Bear's birthday, so I tried a homemade cake from Nigella Lawson...I must say, it was pretty, but we were underimpressed with the density. It wasn't THAT bad, I mean, we ate it...
And here she is with Mr. Cheese himself. It was all very exciting. He did NOT eat any cake (standard white box cake...much lighter and more moist...
Here is some of the fun...
Air Hockey, AGAIN...this time with Beanie and her friend JB (see her momma's blog). Looks like JB snuck a good shot in on our own reigning Air Hockey Champ...
And here is Beanie, irritated with the length of the freebie Chuck E. Cheese ride...
I have many other pictures, but no permission from other parents...suffice to say, we had a blast.
So after 8 days, 6 balloons, 2 cakes, a lunch and a party...Happy Birthday, Bear of mine!
See ya around...
Now lest you feel sorry for me for all my woe...let me just say, NOBODY was THAT sick. Seriously, we had a day of fever and fatigue and then nothing...and really the fatigue wasn't even that big a deal, Beanie didn't even slow down on school...but she DID take a nap (shhhh...don't tell anyone, it is apparently the utmost disgrace for a 9 year old to 'rest her eyes').
All that to say, I have a least a dozen really good excuses why Bear's birthday spanned 8 days. See, we have a rule...on anyone's birthday, we don't do school...so we got her birthday off. Then, of course, because it was the weekend and we wanted to give her the choice, she chose Sunday dinner out...we went to Friday's and they sang and it made her little eyes sparkle. But wait, there is more.
I, finally, the day OF her birthday said, "Okay, nobody is sick, whadaya wanna do...quick??" Well there was some thought of a tea party (the tea party place closed, bummer), a sprinkler party (ummm...hello, February, time of completely erratic temps in Texas) and Chuck E. Cheese. I've gotta tell you when she said, "I want a Chuck E. Cheese party", I actually felt my legs go cold. But then I thought, hmmm...maybe during the week it'll be okay.
So I emailed a couple of our closest homeschool friends, got on to the Chuck E. Cheese website and scheduled the party for 11 am on a Thursday. It was actually dreamy. I had one of our favorite almost teenagers come to help wrangle kids...we had 15 kids that ranged in age from 3 months old all the way to the 12 year old...most in the 2-9 range and 5 adults. The kids ran and played and got tickets and ate the sad little cake I brought and met Chuck E. Cheese.
And I didn't have to do the dishes, except the cake pan...which I felt was the best part.
The following picture is of the FIRST cake I made. We decided that artificial colors were banned for Bear's birthday, so I tried a homemade cake from Nigella Lawson...I must say, it was pretty, but we were underimpressed with the density. It wasn't THAT bad, I mean, we ate it...
And here she is with Mr. Cheese himself. It was all very exciting. He did NOT eat any cake (standard white box cake...much lighter and more moist...
Here is some of the fun...
Air Hockey, AGAIN...this time with Beanie and her friend JB (see her momma's blog). Looks like JB snuck a good shot in on our own reigning Air Hockey Champ...
And here is Beanie, irritated with the length of the freebie Chuck E. Cheese ride...
I have many other pictures, but no permission from other parents...suffice to say, we had a blast.
So after 8 days, 6 balloons, 2 cakes, a lunch and a party...Happy Birthday, Bear of mine!
See ya around...
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