Wow! I can't believe that we are six days away from getting the dreaded cast off! We're in the final stretch and here's what's been happening since the last post:
Sophie went to Chris' house to spend the two weeks prior to Christmas. It didn't take her long before she figured out how to slide out of her bed at night and into the middle of her room. The only problem was that her feet frequently got tangled in her covers which resulted in a squall in the middle of the night. She slept great for about the first two nights and then all bets were off once she found new mobility. Chris spent a great part of the nights up and down as she was sliding off the bed.
As if that weren't enough, Sophie B also figured out how to slide off the couch! Chris isn't exactly sure how she did it; however, when he went into the kitchen to put water on to boil, she was on the couch. When he popped back in the den to check on her, she was in the middle of the floor on her tummy, smiling up at him. This girl has got some great determination! She continued to flip herself off the couch for the rest of her time there.
Sophie spent much of her time at Chris' house with Mimi (Bonnie) and I am sure that she loved having that undivided Mimi time. Papa Taylor came down several times and, with his help, the gals were able to make shopping trips to the mall, Wal Mart and generally get out and about. Sophie started her homebound with Ms. Douglas at Chris' house as well. Ms. Douglas told Bonnie that one day, Sophie pointed to the correct photo 5 out of 5 times. Go SOPH!
Sophie came back to my house on Christmas day. Since she is definitely OVER her cast, we've been trying to give her at least a little entertainment each day. Christmas took care of itself; as did the day after since Cori, Neill, Joan, and Ben came to join Chi Chi, Poppa, Susan, Jack, Sophie, and me at the hacienda for a post-Christmas dinner. Sophie loved opening presents this year. She was a quick draw on the wrapping paper and was enjoying checking out what was inside. Her favorite toys so far seem to be the Crayola Glow Station, the Huggums doll (if it will replace Belle, how happy we will be!), Laurie Berkner/Jonas/Imagination Movers performance DVDs, and a book from Ms. Kaye (just received today) called My Pretty Pink Purse. I think that book about sums it up for the B!
Sunday (the 27th), we ventured to church for the first time. I think Soph was thrilled to get out and see all of her church-related constituents. Joan rode in the back with Soph and entertained her throughout the trip while Jack rode with Ben. Soph was great about cuddling on the "couch" (as Jack calls the pews) and loved all of the music (it was "Lessons and Carols" Sunday after all). When we got home, she was exhausted. In fact, we all took a nap!
Monday brought some Homebound from Ms. Douglas. Sophie B worked hard! She was so exhausted afterward that she fell asleep sitting up on the couch. Together, The B and Ms. Douglas worked on matching, orienting a book, pointing to pictures, identifying objects from their photos, coloring, stacking, putting together a puzzle, drinking from a big-girl cup, and putting objects in a container. They also used some signs and an Augmentative Communication Device to request snacks and drinks. She did fantastic! Jack was fascinated and wanted to help; we had to promise that he could watch part of it on Wednesday.
Tuesday, Sophie's big excitement was going for a walk with Susan. Susan bundled her up nice and tightly and they took the big loop around the block. I think they were both worn out from that one - in addition to the weight of her casts, her wheelchair is awkward and heavy! Jack and I also attempted to help her with some Homebound skills; however, we are definitely not as skilled as Ms. Douglas. I think Sophie saw us as the amatuers that we are a chose not to work. We had fun getting ready though! Jack was excited to be a helper.
Wednesday, Sophie had Homebound again, this time in the afternoon. Again, she was worn out. While Jack went for a date with Daddy, Sophie and Susan stayed home and had a date of dinner and a movie with some cuddles thrown in. Today, our big adventure has been a trip to McDonald's for lunch. Amazingly, the whole family (Sophie, Jack, Susan and me) fit in the car with our friend, Miles. Lunch was enjoyed by all and the boys played hard on the playground. We are now at home where Sophie is lounging by the fire, enjoying her new book from Ms. Kaye and a football game and waiting for Susan to finish the hot chocolate. I think that we may try to hit the movies tomorrow.
This is the life! Much love.
Thursday, December 31, 2009
Wednesday, December 9, 2009
Movin' On Up!
Yes, that's right. . .we're making progress! Last night, Sophie went to sleep with only about 15 minutes of diva fuss beforehand. YAY!! She woke up this morning at 4:30, 5:30 and 6:30; however, unlike the screams of death that I would have heard for the past week or so, there were some whimpers which quickly stopped after the diaper was changed, sassy was replaced, or she was tucked back in. At 6:30, though, Jack was awake, too, and craved a cuddle with his sister; we did wake her up at that point. She may be tired today but - knock on wood - it looks like the worst is over!!!! Hallelujah!
Sophie had her follow up appointment with Dr. Piehl, our orthopaedist, yesterday and things are looking good. I posted her newest XRay above. If you look closely, you can see the pins on her left hip (Dear Reader, your right) that are holding the cadaver bone in place. Cool! Ultimately, we'll have to get those taken out; however, right now, things are looking really great. Her incision is healing nicely and we've decided to fore go the covering for now as long as she isn't picking at it. The incision site is quite large; Jack saw it this morning and thought it was "a bad boo boo." He wanted to know how long it would be around and we talked about the fact that Sophie would always have a scar. Hopefully it will fade some but at least it can be covered by a bathing suit in the summer. No cropped shirts for the B! : )
The D-Day for cast removal is January 5. Once she gets her cast off, Sophie will be able to go back to school with her regular wheelie. Yesterday, they trimmed the cast a little but last night it had already slipped down again. Who knew that a cast will slide down and move around as she wiggles?? I think at this rate, we're soon going to have the bar down at her ankles. . .or her feet will just slide right out. I think she'd be fine with that! She's so funny; she's now figured out how to make us laugh by lifting her right foot/leg up and waving it around. She thinks it's really hysterical. She did another Pilates move last night: "Rolling Like a Ball" was utilized so that she could continue holding on to her bar between casts as Mom made her quit sitting up and lie back on the pillows. She was thrilled with her brilliance. We all are!
Much love.
Monday, December 7, 2009
Two down; four to go!
We're at the two week mark. YAY!! Sophie B is doing well, although she's cranky as a hornet. Mom thinks she's bored, which she probably is. There's only so much you can do when you are lying on your back and I think she's tired of all of it. We try putting her on her side but - alas! - she scooches her hiney so that she's flat on her back. She did let me prop her up in the middle of the night last night. I think all that lying on her back finally got old. We've watched a TON of TV these past two weeks. I think Soph has probably seen every "iCarly," "Jonas," "Imagination Movers," and "Little Einstein" that has been created. We've moved on to some movies, which seem to help; she loves Beauty and the Beast and has enjoyed the Charlie Brown Christmas special.
We've started laying her flat on the floor and she seems to enjoy that. I think she feels like she has more freedom that way, even though she's limited to what's around her. We've given her some of Jack's toys from his room to make it seem more exciting and she does love that. (Gosh, Jack would die if he found out!) Wheeling her from place to place just isn't as cracked up as it used to be; she'd much rather sprawl out and let us come circulate around her head. She likes her people close to her.
One thing that seems to be getting The B down these days is her incision site. The site itself is okay; however, it's the dressing that's the problem. She managed to tear off tiny bits of the first three dressings that we put on and we are now down to medical tape and guaze. Susan did go on a quest today for the dressing that we got in the hospital as it seems to move more with her skin than the tape. Poor sweets; her skin is sooooo irritated from the tape. It's so fair and sensitive anyway that any kind of abrasion or irritation seems magnified a hundred-fold. Susan mentioned this morning that The B seemed to be squirmy in her wheelie and when sitting up this morning. I can't help but wonder if it's the tape.
We're still hanging on the Motrin. Sometimes, she doesn't seem to need it but I guess there are flare ups now and then. Susan actually went to get more on her quest for a wound covering today. At least we haven't backslid to the Tylenol with Codene. : )
Sleep is still. . .well. . .difficult. We've had trouble getting her down the past three nights, although it take less time each night. She has gotten used to being the principessa (as mentioned in an earlier post) and we're having some toddler boot-camp to get back into her routine. The other night, she woke at 4:30 a.m. I got her a snack, a drink, changed her diaper, put a sweater on her (in case she was cold), gave her Motrin for pain and Benadryl for sleep; in short, I couldn't figure out what else to do. We spent the next hour (4:45-5:45) with me stationed in the hallway listening for the fall of the sassy or the cup and her screaming her little lungs out. It's humorous really; it's something so typical that it makes me laugh. I am sure that if she could have stood up, she would have thrown herself on the floor in front of the door and drummed her heels and fists on the floor. I really had to laugh as I waited to rush back in, feeling like the King of Siam's servant as I averted my eyes from hers (thanks, SPY), and give her her sassy or cup back to encourage sleep. At 5:45, though, I decided to put her in bed with me where she promptly fell asleep. C'est la vie!
Even though she's been a little cranky, Sophie's still keeping us entertained, though! Susan and I did some singing for her yesterday and she actually danced a little - she got her hips hopping and her head bopping. It was nice to see. : ) Mom wants to paint her toenails but her little toes just keep moving and grooving underneath all that pink cast. I don't know how we're going to keep those piggies still!
Sophie has her first follow up with Dr. Piehl tomorrow morning at 8:45. Hopefully, he'll think she's doing as great as we do! If you have ideas about entertainment, please let us know! We'd love some suggestions! And, as always, feel free to become a "follower" or leave a comment. We'd love to hear from you and know that you're out there thinking about us! : )
Much love.
We've started laying her flat on the floor and she seems to enjoy that. I think she feels like she has more freedom that way, even though she's limited to what's around her. We've given her some of Jack's toys from his room to make it seem more exciting and she does love that. (Gosh, Jack would die if he found out!) Wheeling her from place to place just isn't as cracked up as it used to be; she'd much rather sprawl out and let us come circulate around her head. She likes her people close to her.
One thing that seems to be getting The B down these days is her incision site. The site itself is okay; however, it's the dressing that's the problem. She managed to tear off tiny bits of the first three dressings that we put on and we are now down to medical tape and guaze. Susan did go on a quest today for the dressing that we got in the hospital as it seems to move more with her skin than the tape. Poor sweets; her skin is sooooo irritated from the tape. It's so fair and sensitive anyway that any kind of abrasion or irritation seems magnified a hundred-fold. Susan mentioned this morning that The B seemed to be squirmy in her wheelie and when sitting up this morning. I can't help but wonder if it's the tape.
We're still hanging on the Motrin. Sometimes, she doesn't seem to need it but I guess there are flare ups now and then. Susan actually went to get more on her quest for a wound covering today. At least we haven't backslid to the Tylenol with Codene. : )
Sleep is still. . .well. . .difficult. We've had trouble getting her down the past three nights, although it take less time each night. She has gotten used to being the principessa (as mentioned in an earlier post) and we're having some toddler boot-camp to get back into her routine. The other night, she woke at 4:30 a.m. I got her a snack, a drink, changed her diaper, put a sweater on her (in case she was cold), gave her Motrin for pain and Benadryl for sleep; in short, I couldn't figure out what else to do. We spent the next hour (4:45-5:45) with me stationed in the hallway listening for the fall of the sassy or the cup and her screaming her little lungs out. It's humorous really; it's something so typical that it makes me laugh. I am sure that if she could have stood up, she would have thrown herself on the floor in front of the door and drummed her heels and fists on the floor. I really had to laugh as I waited to rush back in, feeling like the King of Siam's servant as I averted my eyes from hers (thanks, SPY), and give her her sassy or cup back to encourage sleep. At 5:45, though, I decided to put her in bed with me where she promptly fell asleep. C'est la vie!
Even though she's been a little cranky, Sophie's still keeping us entertained, though! Susan and I did some singing for her yesterday and she actually danced a little - she got her hips hopping and her head bopping. It was nice to see. : ) Mom wants to paint her toenails but her little toes just keep moving and grooving underneath all that pink cast. I don't know how we're going to keep those piggies still!
Sophie has her first follow up with Dr. Piehl tomorrow morning at 8:45. Hopefully, he'll think she's doing as great as we do! If you have ideas about entertainment, please let us know! We'd love some suggestions! And, as always, feel free to become a "follower" or leave a comment. We'd love to hear from you and know that you're out there thinking about us! : )
Much love.
Thursday, December 3, 2009
Post-Thanksgiving Thankfulness
The B is well and kicking today! Well, not really kicking but she is moving and grooving. She had a wonderful day yesterday: her appetite improved, she was happy all day, she waved and beamed at me whe I got home after rehearsal. All-in-all, she is feeling better, I think . This morning, after some nighttime party time at 3 a.m. and a brief wake up at 7, she went back to sleep and slept until 10. 10!! Seems like old times. . .I tried to talk her into watching Pretty In Pink; however, we're now watching "Charlie and Lola" after she giggled through "Lazy Town." You can see who wears the pants (or the dress) lately in this house! : )
In reading through the last post, I don't want you, Dear Reader, to feel that I am somehow traumatized by The Soiffure's recent wakefulness. I'm not, really. It hearkens back to "the good old days" when we realized just what partying at midnight was really about. It's just been a while and I'm out of practice. So, in light of the recent Pity Party Post, I thought it would be nice to show a little post-Thanksgiving thankfulness this morning. Here are all the things I'm thankful for regarding The B:
The way she waves at me accross the room when I return from somewhere.
Her smile with her little gappy front teeth.
Her sassy personality.
The way she hugs soooo hard.
Her sparkly blue eyes, especially sparkly when she waves accross the room.
The way she lunges in for a kiss with her lips puckered then manages to sneak her tongue in against my cheek at the last minute.
The way she loves tights and fancy dresses and smiles so big when we call her "princess" or Jack tells her that she is beautiful.
The way she is smart, way smarter than all of us, about what's really important in this world.
Her unconditional love.
I'm sure that doesn't cover even half of it. . .but it's a start! Right now, I think the B is thankful that Lola is a diva, just like her. Actually, she may be taking notes on some things to add to her principessa repetoire.
Much love.
In reading through the last post, I don't want you, Dear Reader, to feel that I am somehow traumatized by The Soiffure's recent wakefulness. I'm not, really. It hearkens back to "the good old days" when we realized just what partying at midnight was really about. It's just been a while and I'm out of practice. So, in light of the recent Pity Party Post, I thought it would be nice to show a little post-Thanksgiving thankfulness this morning. Here are all the things I'm thankful for regarding The B:
The way she waves at me accross the room when I return from somewhere.
Her smile with her little gappy front teeth.
Her sassy personality.
The way she hugs soooo hard.
Her sparkly blue eyes, especially sparkly when she waves accross the room.
The way she lunges in for a kiss with her lips puckered then manages to sneak her tongue in against my cheek at the last minute.
The way she loves tights and fancy dresses and smiles so big when we call her "princess" or Jack tells her that she is beautiful.
The way she is smart, way smarter than all of us, about what's really important in this world.
Her unconditional love.
I'm sure that doesn't cover even half of it. . .but it's a start! Right now, I think the B is thankful that Lola is a diva, just like her. Actually, she may be taking notes on some things to add to her principessa repetoire.
Much love.
Wednesday, December 2, 2009
Fighting Sleep
Sophie B is back at it. . .fighting sleep. This is a monster that we haven't faced in quite a while. In fact, we routinely congratulate ourselves on our luck to have such a great-sleeping Angel. Well, it was nice.
Sophie has gotten quite used to being the principessa around the home; everyone caters to her on a regular basis and it has gotten kicked up a notch since the surgery. First, her schedule was disrupted by all of her "attendants" at the hospital. Once home, she got to sleep in Mommy's bed for the first week. Then she got to stay up late the first few nights followed by jaunts to crazy town after that. Her constituents have flocked to her side, day and night, to bring toys, food, drink and entertainment. In fact, Jack and Susan have been regularly constructing puppet shows for her pleasure (Brooke starred as Baby Jaguar in last night's). It takes 43 people to dress and bathe her and she is carried or wheeled from place to place. What's not to love?
The past few nights (and even sometimes during the day), she has turned into what I like to call The "My-Super-Sweet-Sixteen-As-Seven-Year-Old" Sophie - nothing suits her unless we are all as close as possible to her head. It really is sweet but when she is literally screaming from her bedroom because she's not entertained to sleep, it gets old. Normally, she would crawl out of bed and rearrange her drawers, unload her toy basket, and make her way to her door to knock until someone answers and puts her back to bed. Since she is stationary these days, the alternative is an awful, gut-wrenching scream that sounds like she is caught in the jaws of life. Luckily, when one checks on her, she is all smiles and wrapped up in bed just needing her Baby Belle back from where she has thrown her on the floor in an angry rage.
Hopefully, this is but a moment and our sweet, sleepy darling will be back soon. The melatonin has been purchased and started again; perhaps we will have a better night tonight. I can tell you, the screaming did stress out all the members of The B's constituency, including favored little brother; luckily it passed after 15 minutes or so and she slept until 7:30 this morning.
Love and sleep to all.
Sophie has gotten quite used to being the principessa around the home; everyone caters to her on a regular basis and it has gotten kicked up a notch since the surgery. First, her schedule was disrupted by all of her "attendants" at the hospital. Once home, she got to sleep in Mommy's bed for the first week. Then she got to stay up late the first few nights followed by jaunts to crazy town after that. Her constituents have flocked to her side, day and night, to bring toys, food, drink and entertainment. In fact, Jack and Susan have been regularly constructing puppet shows for her pleasure (Brooke starred as Baby Jaguar in last night's). It takes 43 people to dress and bathe her and she is carried or wheeled from place to place. What's not to love?
The past few nights (and even sometimes during the day), she has turned into what I like to call The "My-Super-Sweet-Sixteen-As-Seven-Year-Old" Sophie - nothing suits her unless we are all as close as possible to her head. It really is sweet but when she is literally screaming from her bedroom because she's not entertained to sleep, it gets old. Normally, she would crawl out of bed and rearrange her drawers, unload her toy basket, and make her way to her door to knock until someone answers and puts her back to bed. Since she is stationary these days, the alternative is an awful, gut-wrenching scream that sounds like she is caught in the jaws of life. Luckily, when one checks on her, she is all smiles and wrapped up in bed just needing her Baby Belle back from where she has thrown her on the floor in an angry rage.
Hopefully, this is but a moment and our sweet, sleepy darling will be back soon. The melatonin has been purchased and started again; perhaps we will have a better night tonight. I can tell you, the screaming did stress out all the members of The B's constituency, including favored little brother; luckily it passed after 15 minutes or so and she slept until 7:30 this morning.
Love and sleep to all.
Monday, November 30, 2009
One Down, Five to Go!
Yay! We are one week down!! I can't believe it's been a week, yet I also can't believe we have five left. I know they will go quickly, though, and Sophie B will soon be back to getting into everything.
The last two days have been interesting. Sophie's visit to Crazy Town was repeated Saturday night with a final sleepytime arrival around midnight. That was followed up by a wake up at 5:45 after which The B never fully went back to sleep. Needless to say she was fairly cranky yesterday (although perhaps she was simply upset that Clemson didn't do their best on Saturday)! The crankiness was eased a little with visits from Carolle, Brooke, Jack, Chris and Charlotte. I think the new faces did her good; I'm pretty sure she's tired of mine!
The B also finally figured out yesterday that these neon pink casts on her legs are permanent - and was not too happy about it. She actually tried to do a chin-up on the bar between her legs and ended up in a V-sit. It was quite funny! I swear, that girl has abs of steel! Since then, she's managed to sit up fully by pushing herself up on her elbows and she LOVES the look of horror on our faces when she leans off the bed/couch to retrieve something that she has intentionally thrown down. In a couple of weeks, she's going to be all over the place!
Last night, Crazy Town ended around 10 p.m. and Sophie slept until 9:30 this morning. Yay! She has been much more relaxed today and her appetite is better. I think sleep has done her good. Today was spent with Legos, cars, and her plastic handbag. We also watched Tinkerbell on Disney and Barbie and the Three Muskateers. It's been a good day!
I'm adding on a photo of Sophie as we left the hospital with her nurse, Ebony. Enjoy!
Much love!
Saturday, November 28, 2009
She's a wild woman!
**DISCLAIMER: This content may not be appropriate for all audiences. To those readers with sensitive stomachs, please skip the first section.
LET'S TALK ABOUT POOP, BABY!
So, Sophie had her first poop after the surgery at 6:30 this morning. I swear, it was like being a doula or a labor and delivery nurse. First of all, this cast is not so conducive to pooping. She's got her legs straight, is flat on her back, and has a diaper snug around her waist. Not to mention that the cast itself makes an "A," not leaving a very wide area at the top. Fun times. What started out as a whimper from Sophie soon turned into a scream. I'm not sure if her hip hurt from the pressure or it just hurt in general; however, it was not a fun way for either of us to wake up. If this is an indicator of more things to come, I think we'll be purchasing some Prune Juice or something fairly quickly.
On to more "appropriate" topics. . .
IT HAPPENED LAST NIGHT
Sophie went to crazy town. The trip started around 8:00 and didn't end until she fell asleep around midnight. I don't think I've been pinched, grabbed, or manhandled by a 7 year-old so much in my life. Susan and I tried to get her down from 8- 10 when I finally gave her some Tylenol 3. No dice. We even enlisted Chi Chi's help but it didn't work. I got back in the bed with her around 11 and pretended to sleep. I think that's when she finally drifted off.
After our crazy town jaunt and the poop party this morning, Sophie was hard to wake up at 8:30. Now that she's had breakfast, Motrin and a clean nightgown, she seems to be doing well.
Whew!!
LET'S TALK ABOUT POOP, BABY!
So, Sophie had her first poop after the surgery at 6:30 this morning. I swear, it was like being a doula or a labor and delivery nurse. First of all, this cast is not so conducive to pooping. She's got her legs straight, is flat on her back, and has a diaper snug around her waist. Not to mention that the cast itself makes an "A," not leaving a very wide area at the top. Fun times. What started out as a whimper from Sophie soon turned into a scream. I'm not sure if her hip hurt from the pressure or it just hurt in general; however, it was not a fun way for either of us to wake up. If this is an indicator of more things to come, I think we'll be purchasing some Prune Juice or something fairly quickly.
On to more "appropriate" topics. . .
IT HAPPENED LAST NIGHT
Sophie went to crazy town. The trip started around 8:00 and didn't end until she fell asleep around midnight. I don't think I've been pinched, grabbed, or manhandled by a 7 year-old so much in my life. Susan and I tried to get her down from 8- 10 when I finally gave her some Tylenol 3. No dice. We even enlisted Chi Chi's help but it didn't work. I got back in the bed with her around 11 and pretended to sleep. I think that's when she finally drifted off.
After our crazy town jaunt and the poop party this morning, Sophie was hard to wake up at 8:30. Now that she's had breakfast, Motrin and a clean nightgown, she seems to be doing well.
Whew!!
Friday, November 27, 2009
Home for the Holidays
We've made it through the first four days and, miraculously, we were home for Thanksgiving! This is how it's gone:
D DAY: The surgery
The surgery went really well. We had pre-op for about two hours prior. Sophie was really a trooper. She also proved her superhuman strength by refusing to allow the nurses to take blood; it took three of us to hold her while the nurse did the veinapuncture! When the nurse anethesist came in, Sophie barely gave him a look; however, when his co-NA came in, she sat right up, smiled and tried to climb off my lap. She was smitten! He carried her back to the OR with her kissing him all the way. It capital C-U-T-E!
Two hours later, we got the call that Sophie was finished! They cast her legs and Chris met her in the recovery room. Luckily, they weren't that busy so I got to go in, too (usually there is a "one person per child" rule). She had a fantastic recovery: she drank two apple juices and ate half of a popsicle. We got up to the room and settled in just in time for dinner where she ate about half of her food. There was some itching (probably from the Morphine) and we solved that with some Benadryl. We were congratulating ourselves on a job well done BUT Isn't it always the case that just when you rest, a challenge needs to rear its ugly head?
At about 7:00, Sophie started having breakthrough seizures on a fairly regular basis. We finally got the script for an extra dose of seizure meds about an hour later, dosed her up, and got control of her seizures just in time for the vomiting to start. Sophie vomited all night long, about once an hour, through a dose of Zofran and there was minimal sleep to be had.
DAY 2
Tuesday dawned early with BP checks, vomiting and more. However, at 7:30, the vomiting finally stopped for the most part, leaving dry heaving in its wake. Fun. Zofran came calling again around 7:30 but the vomiting didn't stop completely until we discontinued the Morphine and switched to Tylenol with Codene. That seemed to dull the pain for the most part and left Sophie less drowsy and sick. Yay!!
Tuesday was a pretty good day: Sophie ate little but drank a lot, did well on the Tylenol, ran a low grade fever, napped periodically, and seemed pretty comfortable. We had some visitors, including her brother, Jack, who brought cards from his whole Kinder class. In Jack's words, "I asked my class for a favor. I asked them if they would make get well cards for Sophie. And they did!" They definitely brightened up her room. She loved all of her guests (Mr. Hank, Brooke B., Richard and Linda, Father Paul) but her favorite by far was her baby brother. : ) She began smiling this day, too, with the biggest smiles for Jack, Chi Chi, Mimi, and Poppa Taylor.We got a good bit of sleep Tuesday night, with a large chunk from 12-4:30 a.m.
DAY 3
Wednesday dawned at 4:30 with some blood draws to test CBCs. We had a repeat of the finger stick at 5:30 because the blood clotted. And again at 6:30. When the word came back at 7:00 that it clotted again, we elected to wait a little while and do a veinapuncture. Her temp spiked at 102; however, Tylenol got it under control. I did notice that Sophie had been busy chewing on her IV port which was a great sign that she was feeling better.
At 8:30, the doc came by and announced that Sophie could go home on Wednesday as long as the blood work came back looking good. YAY!! After a veinapuncture, we took the catheter out and got a urine sample for culture. That was traumatic to Sophie but I think she was relieved to get it out. At about 10:00, the nurse tech came by to run a BP and check her temp. Temp was down, BP was good, and she stayed and showed me how to bathe Soph. That is interesting - rolling a child onto her side in this cast is kind of surreal. Plus, I think that she is a little uncomforable, to say the least. Anyway, she did well and I think it made her feel better.
The blook work and urinalysis came back good and we were discharged! We got the IVs out of Sophie's hands (Whew! I wasn't sure if there would be anything left after all that chewing!) and changed her into her own nightgown. We were out!
The ride home was interesting. Ben drove me and Sophie in his Volvo - we figured that had the lowest seat and would be easiest to slide her into. She laid across the seat with her head in my lap. Once home, Chris carried her inside and we put her in my bed. She stayed there for the rest of the day, seeing her constituents as they came to her bedside. : )
She slept all night on Wednesday!
I'M GONNA EAT ON THANKSGIVING DAY
Thanksgiving dawned with a Jack visit at 7:00. Sophie was happy to have him wake her! She didn't really eat her breakfast but was happy to help Chi Chi with her bagel. We dosed her up with the Tylenol 3 and she took a good mid-morning nap. At lunchtime, after a nice snack, we gave her a sponge bath, changed her nightgown and got her into the wheelchair. What a difference that made! Social Sophie was able to be part of the action and even ate Thanksgiving dinner with us in the dining room. Around 6:00, we put her on her side on the couch and that pleased her. She was able to watch us play Quiddler and do calesthenics with Joan. She also enjoyed an entire Pumpkin Whoopie Pie - it weighs only about 5 pounds. I think she's going to weigh 97 pounds once we get this cast off!
Last night, she slept from 9:00 - 3:30. I dosed her again with Tylenol and she stayed awake a little while; she seemed to be uncomfortable. After getting back to sleep, she slept until 8:30. Hurray!
TODAY
This morning, we tried only Motrin to see how she does. So far, so good! She's in her wheelie and had breakfast in the kitchen with us. We're now watching Hercules on ABC Family and she is laughing at all the funny parts. She's back! : )
More to come! Thanks for all the well wishes, good thoughts, and prayers; food, company and love. God has been good, our friends are fantastic, and Sophie is an awesome kiddo!
Love to all.
D DAY: The surgery
The surgery went really well. We had pre-op for about two hours prior. Sophie was really a trooper. She also proved her superhuman strength by refusing to allow the nurses to take blood; it took three of us to hold her while the nurse did the veinapuncture! When the nurse anethesist came in, Sophie barely gave him a look; however, when his co-NA came in, she sat right up, smiled and tried to climb off my lap. She was smitten! He carried her back to the OR with her kissing him all the way. It capital C-U-T-E!
Two hours later, we got the call that Sophie was finished! They cast her legs and Chris met her in the recovery room. Luckily, they weren't that busy so I got to go in, too (usually there is a "one person per child" rule). She had a fantastic recovery: she drank two apple juices and ate half of a popsicle. We got up to the room and settled in just in time for dinner where she ate about half of her food. There was some itching (probably from the Morphine) and we solved that with some Benadryl. We were congratulating ourselves on a job well done BUT Isn't it always the case that just when you rest, a challenge needs to rear its ugly head?
At about 7:00, Sophie started having breakthrough seizures on a fairly regular basis. We finally got the script for an extra dose of seizure meds about an hour later, dosed her up, and got control of her seizures just in time for the vomiting to start. Sophie vomited all night long, about once an hour, through a dose of Zofran and there was minimal sleep to be had.
DAY 2
Tuesday dawned early with BP checks, vomiting and more. However, at 7:30, the vomiting finally stopped for the most part, leaving dry heaving in its wake. Fun. Zofran came calling again around 7:30 but the vomiting didn't stop completely until we discontinued the Morphine and switched to Tylenol with Codene. That seemed to dull the pain for the most part and left Sophie less drowsy and sick. Yay!!
Tuesday was a pretty good day: Sophie ate little but drank a lot, did well on the Tylenol, ran a low grade fever, napped periodically, and seemed pretty comfortable. We had some visitors, including her brother, Jack, who brought cards from his whole Kinder class. In Jack's words, "I asked my class for a favor. I asked them if they would make get well cards for Sophie. And they did!" They definitely brightened up her room. She loved all of her guests (Mr. Hank, Brooke B., Richard and Linda, Father Paul) but her favorite by far was her baby brother. : ) She began smiling this day, too, with the biggest smiles for Jack, Chi Chi, Mimi, and Poppa Taylor.We got a good bit of sleep Tuesday night, with a large chunk from 12-4:30 a.m.
DAY 3
Wednesday dawned at 4:30 with some blood draws to test CBCs. We had a repeat of the finger stick at 5:30 because the blood clotted. And again at 6:30. When the word came back at 7:00 that it clotted again, we elected to wait a little while and do a veinapuncture. Her temp spiked at 102; however, Tylenol got it under control. I did notice that Sophie had been busy chewing on her IV port which was a great sign that she was feeling better.
At 8:30, the doc came by and announced that Sophie could go home on Wednesday as long as the blood work came back looking good. YAY!! After a veinapuncture, we took the catheter out and got a urine sample for culture. That was traumatic to Sophie but I think she was relieved to get it out. At about 10:00, the nurse tech came by to run a BP and check her temp. Temp was down, BP was good, and she stayed and showed me how to bathe Soph. That is interesting - rolling a child onto her side in this cast is kind of surreal. Plus, I think that she is a little uncomforable, to say the least. Anyway, she did well and I think it made her feel better.
The blook work and urinalysis came back good and we were discharged! We got the IVs out of Sophie's hands (Whew! I wasn't sure if there would be anything left after all that chewing!) and changed her into her own nightgown. We were out!
The ride home was interesting. Ben drove me and Sophie in his Volvo - we figured that had the lowest seat and would be easiest to slide her into. She laid across the seat with her head in my lap. Once home, Chris carried her inside and we put her in my bed. She stayed there for the rest of the day, seeing her constituents as they came to her bedside. : )
She slept all night on Wednesday!
I'M GONNA EAT ON THANKSGIVING DAY
Thanksgiving dawned with a Jack visit at 7:00. Sophie was happy to have him wake her! She didn't really eat her breakfast but was happy to help Chi Chi with her bagel. We dosed her up with the Tylenol 3 and she took a good mid-morning nap. At lunchtime, after a nice snack, we gave her a sponge bath, changed her nightgown and got her into the wheelchair. What a difference that made! Social Sophie was able to be part of the action and even ate Thanksgiving dinner with us in the dining room. Around 6:00, we put her on her side on the couch and that pleased her. She was able to watch us play Quiddler and do calesthenics with Joan. She also enjoyed an entire Pumpkin Whoopie Pie - it weighs only about 5 pounds. I think she's going to weigh 97 pounds once we get this cast off!
Last night, she slept from 9:00 - 3:30. I dosed her again with Tylenol and she stayed awake a little while; she seemed to be uncomfortable. After getting back to sleep, she slept until 8:30. Hurray!
TODAY
This morning, we tried only Motrin to see how she does. So far, so good! She's in her wheelie and had breakfast in the kitchen with us. We're now watching Hercules on ABC Family and she is laughing at all the funny parts. She's back! : )
More to come! Thanks for all the well wishes, good thoughts, and prayers; food, company and love. God has been good, our friends are fantastic, and Sophie is an awesome kiddo!
Love to all.
Monday, November 16, 2009
Seven Days and Counting!
Well, we're definitely heading into the home stretch! It's seven days and counting, my friends. Wow, how quickly time flies.
Here's where we stand with things:
1) Regular old fee-for-service MEDICAID has picked back up. Yay! So, everything should be covered for the surgery. We're still keeping our fingers crossed.
2) We went to see All Medical about the new wheelchair last week. They made some adjustments and we've kept the old wheelie for the time being. It will continue to "grow out" for Sophie B as she grows and until we are at a point where she is not growing so quickly. At that point (probably around the time she is 10 or so), we will be looking at a more customizable wheelie.
3) We go to get fitted for the AFOs tomorrow at Brace and Boot.
4) The Personal Care Aide referral has been made. At this point, we are waiting to hear from the organization that approves us. Once we schedule Sophie's evaluation with them, then we will be on board to actually get an aide.
5) The surgery time has been changed to 11 a.m. Sophie will arrive next Monday at 9:00 a.m. to begin all of the pre-op preparations.
We had a pre-op appointment with Dr. Piehl last Wednesday. He went over some things with us, too:
1) Sophie will be in the hospital for three-four days. She should be released sometime Thanksgiving Day.
2) For pain management, Sophie will be on a morphine drip in the hospital. It will give her a continuous dose each hour with the nurse giving extra doses as needed. She will also have oral valium, as needed for agitation. Once home, Sophie will be on Lortab elixer (liquid) with valium liquid as needed.
3) Sophie will see Dr. Piehl about 2 weeks after the surgery for a check on her casts and incisions. In addition, he will xray her hips to make sure everything is healing correctly. Her appt is on Tuesday, December 8.
4) We'll be transferring her mostly using a sheet transfer, which the nurses will show us in the hospital. This will be used for getting her from bed to wheelchair, wheelchair to couch, etc. The mattresses are going to be moved to the floor (to try to keep her from getting hurt - we know she will try to get in/out of the bed at some point) and we will have a rental, reclining wheelchair from All Medical.
Other than that, it's pretty much a wait-and-see proposition! Cross your fingers and pray! : )
On a different note, Sophie will be sporting a new hairstyle soon! Her hair has gotten really long and we are bobbing it for the surgery. We're haircutting on Saturday and I'm sure that a photo will be posted soon after. Look for it!
Thank you all for your thoughts, prayers and words of encouragement. Keep 'em coming!
Much love.
Here's where we stand with things:
1) Regular old fee-for-service MEDICAID has picked back up. Yay! So, everything should be covered for the surgery. We're still keeping our fingers crossed.
2) We went to see All Medical about the new wheelchair last week. They made some adjustments and we've kept the old wheelie for the time being. It will continue to "grow out" for Sophie B as she grows and until we are at a point where she is not growing so quickly. At that point (probably around the time she is 10 or so), we will be looking at a more customizable wheelie.
3) We go to get fitted for the AFOs tomorrow at Brace and Boot.
4) The Personal Care Aide referral has been made. At this point, we are waiting to hear from the organization that approves us. Once we schedule Sophie's evaluation with them, then we will be on board to actually get an aide.
5) The surgery time has been changed to 11 a.m. Sophie will arrive next Monday at 9:00 a.m. to begin all of the pre-op preparations.
We had a pre-op appointment with Dr. Piehl last Wednesday. He went over some things with us, too:
1) Sophie will be in the hospital for three-four days. She should be released sometime Thanksgiving Day.
2) For pain management, Sophie will be on a morphine drip in the hospital. It will give her a continuous dose each hour with the nurse giving extra doses as needed. She will also have oral valium, as needed for agitation. Once home, Sophie will be on Lortab elixer (liquid) with valium liquid as needed.
3) Sophie will see Dr. Piehl about 2 weeks after the surgery for a check on her casts and incisions. In addition, he will xray her hips to make sure everything is healing correctly. Her appt is on Tuesday, December 8.
4) We'll be transferring her mostly using a sheet transfer, which the nurses will show us in the hospital. This will be used for getting her from bed to wheelchair, wheelchair to couch, etc. The mattresses are going to be moved to the floor (to try to keep her from getting hurt - we know she will try to get in/out of the bed at some point) and we will have a rental, reclining wheelchair from All Medical.
Other than that, it's pretty much a wait-and-see proposition! Cross your fingers and pray! : )
On a different note, Sophie will be sporting a new hairstyle soon! Her hair has gotten really long and we are bobbing it for the surgery. We're haircutting on Saturday and I'm sure that a photo will be posted soon after. Look for it!
Thank you all for your thoughts, prayers and words of encouragement. Keep 'em coming!
Much love.
Monday, October 5, 2009
Carolle and Katie go shopping and The Medicaid Wars
Carolle called me on Friday night to chat after reading through the blog. (Yay! At least I know you guys can see it!) She and Katie were talking and Carolle has asked if they can grocery shop for us while we are managing our Sophie B. The answer was a resounding, "Yes!" So, our generous Carolle will be taking a list from Susan each Monday and going to grocery for our home. This will save us so much time and energy so that we can focus on the B.
Thank you Carolle and Katie! You ladies ROCK! (Also, will one of you forward this to Candi? I didn't have her address.)
The last time I took Sophie to see Dr. Willard, in the midst of "The Terrible Hive Epidemic of Ought Nine," I found that they do not accept the Medicaid Choices plan that she is on. Neither, it appears, do any of her doctors. I got that changed this morning and she will be back on "fee for service" (a.k.a. the "old") Medicaid on November 1. Until then, we're still facing co-pays through the month of October. Oh, the joys of medical insurance. At least we have it! : )
Hope you are all staying dry and having a great start to your week! Much love.
Thank you Carolle and Katie! You ladies ROCK! (Also, will one of you forward this to Candi? I didn't have her address.)
The last time I took Sophie to see Dr. Willard, in the midst of "The Terrible Hive Epidemic of Ought Nine," I found that they do not accept the Medicaid Choices plan that she is on. Neither, it appears, do any of her doctors. I got that changed this morning and she will be back on "fee for service" (a.k.a. the "old") Medicaid on November 1. Until then, we're still facing co-pays through the month of October. Oh, the joys of medical insurance. At least we have it! : )
Hope you are all staying dry and having a great start to your week! Much love.
Tuesday, September 29, 2009
Making a List
Hi, everyone!
I thought it might be helpful to start a blog chronicling Sophie B's adventure through her upcoming hip surgery. Not only will it be helpful for all of us; it may also help other parents as they encounter these same issues.
I know that a lot of you have a lot of questions. Honestly, I don't know that this blog will provide answers! But maybe, by starting a list here and posting what we do (and don't) know we can get our ducks in a row for November. If nothing else, this will give us a venue for a round-table discussion to get things rolling.
Here's where we stand now:
1. Sophie's actual surger will be on Monday, November 23 at 9:30 a.m. She will arrive at 7:30 a.m. for pre-op and the surgery will take place at Palmetto Richland Hospital. We will stay for three days. With the holiday, we will probably be released on Wednesday evening. Sophie will be in a "frog-leg" cast. This cast will begin below the pelvis (where the hip creases are) and end at the ankle on each leg. Her calves will be held apart by a rod so that her legs cannot close. This will stabalize her pelvis and femur. She will be in the cast for approximately 6 weeks.
2. The actual surgery is as follows: Sophie's hip socket is too shallow to keep the femur from "popping" out; therefore, it will be reshaped with sterilized cadaver bone which will be held in place with a pin. When the cadaver bone is placed, the Dr. will evaluate whether or not Sophie's femur needs to be turned. If so, he will make a second incision, snip the connective tissue, turn the femur and hold it in place with a metal plate. The pins and plate will be removed approximately 6 months later. For more information on hip dysplasia surgery, see this link:
http://health.howstuffworks.com/hip-dysplasia7.htm
3. Sophie will be at home for six weeks. The first three weeks, she will be at my home. The next two weeks, she will be at Chris' home. She will then return (with Jack) on Christmas Day to my home for the duration of Winter Break. We are hoping the cast will be removed at the end of Winter Break and she will return to school at the beginning of January. For her care, I am taking off the first two weeks and Susan is taking off the third. My mom will be with us to help for those three weeks. Chris is taking off the next two and Bonnie is coming up to assist him. Susan and I will be off on Winter Break for the week following Christmas.
4. Regarding equipment: The Dr. will assist us with renting a wheelchair for Sophie to use while in the cast. It will recline and the legs will extend in the front. The entire wheelchair will fold flat. For the car, she will ride sans car seat with legs out on the back seat. Someone may need to sit with her to make sure she doesn't pop the buckle. : ) At home, Chris and I are both planning to put her mattress on the floor so that she doesn't try to get out of bed and fall.
Here's what is left to do:
1. Set up an appointment to get Sophie re-fitted for her AFOs so that they are ready for her after she has her surgery. This will provide more support as she gets back into walking.
2. Get paperwork ready for a new wheelchair for post-surgery. Sophie is quickly outgrowing her old wheelie; in addition, it's definitely past it's prime. Sophie's PT pointed out that we may need to wait until after the surgery to have it fitted since her hips may shift. However, we are going to get everything else ready.
3. Get aqua therapy set up. We have made contact but still need to visit. This is going to be vital for Sophie's rehab.
4. Get the Personal Care Aide set up. We have to re-interview for this and it can be a tedious process to schedule.
5. Get a schedule going for people to take Jack to/from school, daycare, and tennis; set up "dates" with Jack and parentals, etc. Several of you have offered to help with this (e.g., Brooke is taking Jack in the afternoons of my dance concert rehearsals in December) and we would love it! We are striving to keep his routine as similar as possible.
6. Get a schedule going for parental relief. The parentals are all going to need a break from time to time - to go to the gym, get out of the house, go grocery, etc. That will be essential to maintaining our sanity!
Many of you have offered to help and asked what you can do to help. I hope that this helps you know where we need you and what we need.
I hope you use this forum to communicate with us and let us know where we can use you - prayers, transportation, relief. Please feel free to use this blog as a forum where we can all collaborate together and get this adventure starting on the right foot (pun intended!). Hopefully, with your help, this will be smooth sailing and Sophie B will be up, walking, and better than ever before long.
Love you all!
Jenn
I thought it might be helpful to start a blog chronicling Sophie B's adventure through her upcoming hip surgery. Not only will it be helpful for all of us; it may also help other parents as they encounter these same issues.
I know that a lot of you have a lot of questions. Honestly, I don't know that this blog will provide answers! But maybe, by starting a list here and posting what we do (and don't) know we can get our ducks in a row for November. If nothing else, this will give us a venue for a round-table discussion to get things rolling.
Here's where we stand now:
1. Sophie's actual surger will be on Monday, November 23 at 9:30 a.m. She will arrive at 7:30 a.m. for pre-op and the surgery will take place at Palmetto Richland Hospital. We will stay for three days. With the holiday, we will probably be released on Wednesday evening. Sophie will be in a "frog-leg" cast. This cast will begin below the pelvis (where the hip creases are) and end at the ankle on each leg. Her calves will be held apart by a rod so that her legs cannot close. This will stabalize her pelvis and femur. She will be in the cast for approximately 6 weeks.
2. The actual surgery is as follows: Sophie's hip socket is too shallow to keep the femur from "popping" out; therefore, it will be reshaped with sterilized cadaver bone which will be held in place with a pin. When the cadaver bone is placed, the Dr. will evaluate whether or not Sophie's femur needs to be turned. If so, he will make a second incision, snip the connective tissue, turn the femur and hold it in place with a metal plate. The pins and plate will be removed approximately 6 months later. For more information on hip dysplasia surgery, see this link:
http://health.howstuffworks.com/hip-dysplasia7.htm
3. Sophie will be at home for six weeks. The first three weeks, she will be at my home. The next two weeks, she will be at Chris' home. She will then return (with Jack) on Christmas Day to my home for the duration of Winter Break. We are hoping the cast will be removed at the end of Winter Break and she will return to school at the beginning of January. For her care, I am taking off the first two weeks and Susan is taking off the third. My mom will be with us to help for those three weeks. Chris is taking off the next two and Bonnie is coming up to assist him. Susan and I will be off on Winter Break for the week following Christmas.
4. Regarding equipment: The Dr. will assist us with renting a wheelchair for Sophie to use while in the cast. It will recline and the legs will extend in the front. The entire wheelchair will fold flat. For the car, she will ride sans car seat with legs out on the back seat. Someone may need to sit with her to make sure she doesn't pop the buckle. : ) At home, Chris and I are both planning to put her mattress on the floor so that she doesn't try to get out of bed and fall.
Here's what is left to do:
1. Set up an appointment to get Sophie re-fitted for her AFOs so that they are ready for her after she has her surgery. This will provide more support as she gets back into walking.
2. Get paperwork ready for a new wheelchair for post-surgery. Sophie is quickly outgrowing her old wheelie; in addition, it's definitely past it's prime. Sophie's PT pointed out that we may need to wait until after the surgery to have it fitted since her hips may shift. However, we are going to get everything else ready.
3. Get aqua therapy set up. We have made contact but still need to visit. This is going to be vital for Sophie's rehab.
4. Get the Personal Care Aide set up. We have to re-interview for this and it can be a tedious process to schedule.
5. Get a schedule going for people to take Jack to/from school, daycare, and tennis; set up "dates" with Jack and parentals, etc. Several of you have offered to help with this (e.g., Brooke is taking Jack in the afternoons of my dance concert rehearsals in December) and we would love it! We are striving to keep his routine as similar as possible.
6. Get a schedule going for parental relief. The parentals are all going to need a break from time to time - to go to the gym, get out of the house, go grocery, etc. That will be essential to maintaining our sanity!
Many of you have offered to help and asked what you can do to help. I hope that this helps you know where we need you and what we need.
I hope you use this forum to communicate with us and let us know where we can use you - prayers, transportation, relief. Please feel free to use this blog as a forum where we can all collaborate together and get this adventure starting on the right foot (pun intended!). Hopefully, with your help, this will be smooth sailing and Sophie B will be up, walking, and better than ever before long.
Love you all!
Jenn
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