Wednesday, December 21, 2011

Jump for Joy!!

Today we saw Dr. Flanagan and got several x-rays (left ankle too since it's been's normal.) The hip is doing well enough that Joy can go down to once a week for physical therapy, and was cleared to run and jump! (Although she said jumping is still the worst thing for Joy's hip, do it as tolerated.)Then we hung out at the hospital, visited the rehab unit, had lunch in the newly remodeled cafeteria, and got to make an amazing gingerbread house in the ZONE!!! I think we were there 5 hours! The hospital is decorated for the holidays, and is quite lovely!

Sunday, December 11, 2011

Sleeping brace/pillow

When we heard Joy would have to sleep in her brace for 6 months, I immediately asked for one of these. (The metal/velcro walking brace would have been very hard to sleep in!) Only one and a half more months to go before she's hit the 6 month mark!! Whew! I know she'll be happy to say goodbye to this ritual!

Friday, November 18, 2011

Give thanks

Grandpa Tom, his girlfriend Glad and I had Thanksgiving lunch with Joy today at school. She presented me with this lovely card she'd made. Since it mentioned the fixator and her "hip condition" I thought I'd share it here on the Perthes Blog. Such a sweet girl!!!

Wednesday, November 9, 2011

Perthes follow-up

Today Joy had two appointments. First was in the clinic to see the rehab doctor and show her how well Joy is doing! Then quickly off to orthopedics (carried Joy piggy-back to get there on time, then we waited an hour!!) We saw Dr. Schmitz today since Dr. Flanagan is on maternity leave with her new son! There seems to be a lot of growth on the x-ray, but the head shape is not as round as we'd hoped, more cylindrical. Goes back and forth in the socket well, but rotation is limited. He said Joy's hip will never be normal, but should get her into her 60's before a replacement is necessary! He also said she would never be a professional gymnast. (Not that she was going to be, but she was taking gymnastics classes when she was diagnosed with Perthes.) We'll have to get her on a swim team instead! She's not released to full activity yet (still no running/jumping), but activity as tolerated. We go back in December. Schmitz wouldn't completely rule out further surgery, but I think things are looking pretty good! If not for the external fixator, he said her femoral head would be square!

Thursday, October 20, 2011

Last pin care!!

Now that it's been a couple of months since the external fixator was removed, I'm wishing I had taken more videos of Joy when she had it on. Oh well. Here's a video of the last time we had to do pin care before the fixator came off. We had it down to a science by then, Joy was even able to do the top pins herself.

Monday, October 10, 2011

Sensations TheraFun

Our physical therapist told us about this place, it's right around the corner from them. Took Grandpa Lee with us today as we visited for the first time. She tried everything she could (no jumping on trampolines...) and we stayed about 2 hours. (For 17.00 we had to get our money's worth!) Her favorites were the bikes and the zipline. I liked the quiet room with all the cool light effects. Great PT for Joy! We'll be back!

Saturday, October 8, 2011

Aqua Therapy!

Joy is now going every other Friday to aqua therapy!!!! She loves to swim! She got to wear a wet-suit for the first time, I really want to get her one!

Monday, September 26, 2011

Hamster Balls!
Joy having fun with her cousin Megan at the fair! (Joy in clear ball, Megan in blue.)

Monday, September 19, 2011

Laser Tag!!

I LOVE this picture of Joy in her laser tag gear!! She played for the first time @ Stars and Strikes after a night of bowling with Karen and Lee. (Sadly we got rear-ended on our way home that night! No fun, but everyone is O.K.! We joked about our real-life bumper car action since the bumper cars were the only thing we hadn't done @ Stars and Strikes!!)

Brace-off sleep-over celebration!

It's been 6 weeks of the Scottish Rite brace, and Joy is brace free!!!! (We see Dr. Flanagan Wednesday to make it official.)Her friends came over for a sleep-over, playing outside, picnic, hot-tub, walk to Brusters, girls rock-band, Wii games, etc. Also my sis-in-law Karen was in town for work, so we had a fun filled weekend with her and Grandpa Lee too!!
More pictures to come, here's the picnic!

Fun Run!

This year at Joy's elementary school they raised money with a Boosterthon Fun Run! Joy rolled (was pushed around....) for 29 laps, then did the 30th on crutches, and walked the victory lap holding my hand! So proud of her!!! School raised over 20,000!!

Joy and Lilly

Our neighbor Virginia's poodle LOVES Joy! They hadn't seen each other all summer!!

Sunday, August 28, 2011

Just keep swimming!

Summer is almost officially over, so we're trying to swim as much as possible, since it's GREAT physical therapy for Joy (and she LOVES it!!!) Here are some shots today from our afternoon at Mountain Park Aquatic Center pool. They have two huge waterslides (Joy did BOTH! and crawled up the two flights of stairs....)and a current loop that pushes you round and round. Joy loves it there! Her pin-holes are still pretty obvious....several folks asked what happened to her. Just another opportunity to educate others about LCPD!

Thursday, August 18, 2011


Here are the latest X-rays (post external fixator removal) next to some pre-fixator x-rays. Interesting to see the holes in the bones left by the pins! Dr. Flanagan is pleased with the placement of the femur in the socket, now we just have to watch and wait for regrowth!

Monday, August 8, 2011

1st day of 4th grade!!

Off she went to school in her brace! She used her walker and the wheelchair today. Stayed for the full day!! Pin-holes closing up nicely!

Saturday, August 6, 2011

Hospital visit pics

Here are some shots I got of Joy and ex-fix before and after removal. We did get to keep it!

Friday, August 5, 2011

Two new holes in Joy....

Yup, she got her ears pierced today! The lady who pierced her was named Joyce, but went by Joy. There wasn't a single tear shed, she is such a brave girl!

Thursday, August 4, 2011

Ex-Fix Off Day!!!!!

It is OFF!!!!! YAY! Now to deal with 6 weeks full time bracing......
Everything went smoothly this morning. Arrived at 6a.m., went into O.R. about 8 and they were done in an hour! We got to keep the fixator pieces, weighed 3.6lbs!! The brace took some extra adjusting/padding once Joy woke-up and pointed out where it hurt. We were home by 1:00! It really WAS an outpatient procedure this time! Now I think we're all going to nap. More pictures later. Dr. Flanagan said we did a great job, and not many families could handle the external fixator. :)

Sunday, July 31, 2011

Joy getting into the pool


With three days left in the "Ex-fix", I'm feeling the urge to document every last detail before it's OFF!!! Here's what the dreaded pin-sites look like after a long swim in the pool.....Joy can now wrap the top three pins herself while I do the lower three. We've got it down to a science! (Glad it's almost over though!!) Bring on the brace!

Thursday, July 28, 2011


The External Fixator comes off one week from today!!!! (August 4th)We're getting in as much swimming as possible before then, Joy LOVES to swim!!! Plus, it's great PT for her left leg to get it stronger for walking soon!!

Thursday, July 21, 2011

Happy Joy!!

Joy is doing great this month!!! Swimming, hot-tub, sleepovers, shopping, dress-up, photo-shoots.....etc.! She rarely needs pain-pills anymore, and we've only got two weeks left till it's OFF!!!!! YAY!

Friday, July 8, 2011

Week in review

Here are some shots from the past few days. We bowled a few times, saw Dr. Flanagan (found out she's expecting!!!), got measured for the brace, another x-ray, aqua-therapy!!,and physical therapy (ball-pit!!).
Dr. Flanagan said there was growth visible on the latest x-ray! I didn't get to see it, will try to get a copy. Aqua-therapy went well except for having to unwrap the pins to get in (angry face pic), and the discomfort of getting re-wrapped in an uncomfortable dressing room......Only three more weeks till removal day!!!!!

Sunday, July 3, 2011

July 3rd fun!!!

Today after church Joy went SWIMMING!!!!! I wanted to wait until after our aqua-therapy appt., but since she'd done so well in the bathtub twice, I figured we'd go for it! She did GREAT! Not a lot of actual swimming yet, but she loved being in the pool! YEA!! Then off to see some early fireworks with friends and family. (I'll have to include them in another collage, ran out of room!)Great day, so proud of Joy!!!

Saturday, July 2, 2011

Joy in June and July....

Here's another collage from the past couple of weeks. We've done a lot of bowling with friends, visiting the kitties at Pet Smart adoption center, and even a trip to the Chattahoochee River! Today we drove out to the Gwinnett YMCA to see where Joy will have aqua-therapy, then we headed down the street to Jones Bridge Park to see what they had to offer. WOW! So pretty!! Joy REALLY wanted to get in the river, can't wait to go back next summer!! I stuck my toe in, it was COLD! Then we hit the Buford Hwy Flea Market, and had a lovely Mexican dinner @ Monterrey. Oh, forgot to point out that Joy finally got in the BATHTUB!! She liked it so much, she's in it again right now!! Looks good to be able to swim very, very soon! YAY! (We see Dr. Flanagan on the 6th, and hope to have aqua-therapy on the 7th.)Ex-Fix off date August 4th!!! WHEEEEE!

Saturday, June 25, 2011

Fun with Joy!

Here are some recent pictures of daily life in "ex-fix"land.....Found Joy sleeping on her side!! So impressed! Then at PT she went up a huge flight of steps, and played in a ball pit (no pics of that...)The moon picture is from the physical therapists lobby. Joy still loves riding the scooter carts at Target, and we plan to get a kitty-cat helmet for her when she is back to riding her bike! Then, Grandpa Lee came to visit, bowl, play Wii, and attend my art opening at Homegrown! It's been a fun few days! Only about 40 more days till fixator removal! YEA!!

Saturday, June 18, 2011

the last few days

It's been a busy week! PT x 2, Dr. visit/x-ray, shopping, bowling, haircut, pre-beach party gathering at church etc. Joy LOVED the big swing at PT, and has a blast driving the electric carts at Target and Publix. :)

Friday, June 17, 2011


Sometimes Joy gets the camera away from me. She takes pics of the cats, and herself....

Tuesday, June 14, 2011

Another wheelchair

I finally decided I'd had enough of the huge reclining wheelchair, so I called and asked for a smaller model. After rerouting the request thru the Dr.'s office to make it official, we got another chair for Joy! Turns out we had a 14 inch, and an 18 inch model. What we needed was a 16 inch, and it seems perfect! Kept the footrests (even though they are too long...) and the anti-tippers (which are too short!) Haven't had to get it in the car yet, but it's bound to be easier!

Sunday, June 12, 2011


Today Joy finally got to drive a scooter-cart at the grocery store! Very exciting!! (She didn't hit anyone, or knock anything over.......)Then, after we got home from a Birthday dinner with Aunt Missi, Joy pulled ANOTHER TOOTH!!!!! Crazy!

Saturday, June 11, 2011

Two in one day!

Joy managed to pull two loose teeth in less than half an hour! Crazy!!

Friday, June 3, 2011

Product Placement...

O.K., Joy is we feature a walker, walker balls (pre-sliced...from Walgreens), a sippy-cup with a straw,(Containing Miralax!), string-bikini!, The Ortho-Fix, a CPM machine, a trapeze bar over the bed......just a normal day around here!

Thursday, June 2, 2011

Kitty face!

Joy woke-up today and said "I want to paint my face!" Why not?! A few faces full of paint got washed off, and reapplied, but this was her best kitty face of the day!

Monday, May 30, 2011

Look who's bowling!!

We usually participate in the Kids Bowl Free program during the summer. We weren't sure Joy would be up to , or able to bowl this summer. We tried it out, and it was fun!!! She used the bumpers, her walker, and a ramp! Yay Joy!!!

Sunday, May 29, 2011

Weekend fun at home!

We had visits from Grandpa Tom and Glad, Megan, Missi, Briley, Charleston and Janet! Joy went with us to church and got in and out of the car without any assistance!!!! Then she walked into church with her walker, and didn't use the chair until coffee hour. She's doing great! (Pin-care is still no fun, guess it will never be a painless process.) Glad to have the CPM, she's doing good at getting her 4 hours of knee bending in a day. I look foward to Joy starting PT Wednesday.

Saturday, May 28, 2011

Going Home!!

Last morning at CIRU! Joy had some breakfast, and we packed our remaining items into a wagon. She played on the activity room computer one last time while we went over our discharge papers. Then off to the Medical Office Building across the driveway for her OT evaluation. More paperwork, more tests, and it was determined Joy will NOT need follow-up OT, they can cover her needs in PT alone. YAY! Then Paul took Joy off to the American Girl store to celebrate (She convinced him to buy her another doll!!!!!)I drove the other car home. The cats were so excited about Joy coming home, one of them puked all over her nice clean bed. Thanks cat! I unpacked and put up pictures and crafts from room 363 to make the transition easier. Once they got home, the CPM machine was delivered, and we strapped her in for a test drive. She's supposed to use it for 4 hours a day, with hour breaks in between. Sure makes a huge difference in her mobility to be rid of the knee pain and stiffness! Using her good leg for support, Joy can now get in and out of bed alone!! Amazing! The rest of the day was very quiet, me and Paul took turns napping. Joy enjoyed her big screen Wii, and playing with her kitties, and new doll. First PT appt. not till Wed. the first. Hope we can keep her moving till then! Good to be home!

Thursday, May 26, 2011

Rehab Day 14

Last full day!! Mostly evaluations in PT/OT this morning. Tests and measurements before Joy goes home. Then at 10 all the girls met up to head to the spa!! We headed downstairs in a caravan of wheelchairs and loaded on to the van. Except for Joy, who got in the family car. I informed the rehab staff of my fear of the interstate, so we all planned to take the "scenic" route. Once everyone was loaded in, it took an hour before our sack lunches showed-up! Some snafoo caused our order to be delayed, and it felt like forever sitting there with Joy laying in the back seat!! Luckily, she had a new American Girl book to read! Once we finally left, it took about an hour of twists and turns and construction delays to get to the Kidz Spa. The first thing I did once Joy was settled at the manicure stand was cut her raggedy nails. (Paul saw on the website they were licensed to paint only) I snipped one too close, and Joy wailed and cried. Which got me crying. (I need a spa day after our spa day!!)
Joy calmed down, I took a moment, and by the end of the afternoon, Joy was braided and sparkly and painted and happy! For the drive home I said I was ready to "bite the bullet" and drive on 285, if it would be quicker and easier for everyone. I did some deep breathing, followed the van very closely, and we made it!! Joy was a half-hour late to afternoon PT, but they took her when she got there. More test, etc. Then one last session with the teacher, and a dinner break (mommy nap!). We HAD to go to the ZONE for a big craft party at 6. Joy did every craft table, but spent the most time designing gowns from patterned paper. The ladies were so impressed with her artistic/fashion skills! Joy also got complimented all day on her talent show song!! (And , of course, her fancy new spa look!!) It was a good last day! Paul arrived after driving thru the storm, and I took a huge load of stuff and medical equipment home. Remade Joy's bed, tried to unpack, and get ready for the return home tomorrow!! Hope I get some sleep. So much to tired! So proud of Joy!!!

Spa girl!

Here's Joy after the day trip to the Kidz Spa in Smyrna!! Blue nails, pink braids, and make-up!

Wednesday, May 25, 2011

Rehab Day 13

I thought we were starting the day with a nap, but the nurse reminded me Joy had a bladder test this morning. I thought it was an ultrasound, turned out to be a "wet-test". They filled Joy's empty bladder with contrast via catheter, made her wait as long as possible, then just pee all over the x-ray table! Strangest thing ever, but we all watched her grey blob of a full bladder slowly shrink live on the screen.The Dr.s said it was the best they'd ever seen. Perfect! Joy just shouldn't hold her pee all day, a bad habit!
Then Joy's activity group got to meet outside by the pretty fountain. Lovely day! Then some OT practice using the shower bench....a dry run until we can convince Joy to get wet again.....previously painful pinsites make Joy wince at the thought of getting wet.
Then some learning with the teacher using computer games, then finger-painting with tinted shaving cream while standing-up! Lunch, then a peer group craft activity. Joy cut out magazine pictures to decorate a box all about herself. There were cats, dogs, cookies, fashion, and curly hair....
Joy got to play some Wii during the next session while we discussed her upcoming discharge!
Then it was almost time for the talent show, but Joy was determined to go down some stairs. The regular stairwell was too steep amd long, so we found a different stairwell with groups of three stairs and a landing. Joy was up easily, but needed a lot of convincing to come down. She made it on a crutch and a handrail and a few tears.....then off to sing in the talent show!!! So cute to see Joy up there with her CIRU girls singing and smiling! Glad they allowed pictures! Got video too, hope to get it on YouTube soon. Pastor Nathan, Grandpa Tom and Joy's friend Stephanie all came to the show! Joy had quite the cheering section!! We snuck out before the last act so Joy could visit with Steph for a while. They played in the activity room and our room as I caught glimpses of Oprah's final show. Love you Oprah!!!
After dinner, down to the Zone for some cookie decorating and Wii! Paul met us there so I could get to choir practice! I heard the rest of the evening went pretty well. Daddy did pin care! One more full day, with a field trip to the Spa.....if I can get us there!

Tuesday, May 24, 2011

Rehab Day 12

Pretty uneventful morning, walking in PT, knee bends, and knee lifts while standing. Then some fun bowling with plastic pins in the hallway! Had to work around a wheelchair, and a couple hospital beds, but in the end, she was getting strikes!! Then Joy had a school session. She emerged grumpy, wouldn't tell me what happened. After school, another stair attempt. This time Joy was supposed to do the hard part (down) first, then easily ascend....but she freaked, and refused. Plan "B", go to the 1st floor gym (where Joy took her first fixator steps) and use their 4 practice steps. Again, up easily, and stuck. She finally threw down her crutch, took both handrails, and made her way down. Not perfect, but done! Then lunch and a break before the next PT. Joy has many different therapists helping her out. This next session she had a new lady, and had trouble communicating her preferances and screamed and cried instead. Not a productive half hour. Then the girls practiced their songs for the talent show tomorrow!! Gonna be cute! Then Joy got to pet the therapy pooch while I talked with the OT about going home. (We leave Friday morning!!) The dog was named Sundae, and licked Joy all over!! Then more walking laps in PT, and a peer group activity "Princess Party!" (meeting beauty queens in The Zone and making crowns!!) Then dinner, and lots of sensitive pin-site pain out of nowhere.....then Charleston and Janet came by! The girls played in the activity room and then we went down to a concert. The girls decided to play "Spot-it" instead. It was fun to have visitors! Then daddy arrived, and I got to have a break at home. Two more days and we're home.....scary.
Two funny things happened between therapy and dining.....we were lowering the bed and BAM! a loud noise. Somehow, the headboard got caught in a rubber wall stopper, and broke a bit off the headboard! Maintenance came up and replaced the headpiece. Odd! Also, while trying to buy a bag of Baked Lays in the vending machine, the chips got STUCK! Had to purchase the next bag, and Joy ate both!

Monday, May 23, 2011

Rehab Day 11

Joy climbed stairs today! She went up easily and quickly.....then she was afraid to come down. Like a kitten in a tree, nothing we tried would coax her down.....finally she sat on the top step, and came down one by one on her bottom. Still progress, I guess! Then the next PT came in and said she wanted to work on stairs!!!! Instead Joy played video games while her knee was bent. There were tears. Next OT session Joy got to bake cookies!! That was fun and easy, though Joy thought the cookies were overcooked, and only ate the tops off! Then lunch, a visit with the clowns, mommy had a nap, and was awakened by the OT at 2:10 saying we were late?? We had nothing on the schedule till 2:30? Someone updated the schedule and forgot to tell us. Joy walked to the gym and played Wii. The last PT let her keep playing Wii while working on the knee bends. More tears. At 4, I put Joy on the CPM for an hour, up to 50 for the last ten minutes....but the screaming got so loud, we stopped. Mommy tried to nap some more, and Paul showed up with dinner. More CPM from 9-10, only up to 43. Joy got her pain meds at 10, and pin-care began around 11. The nurse was real gentle, and tried her best to get Joy to help out. By the end, when the pins were being wrapped, Joy was screaming uncontrollably. I had to capture some of her pained expressions for posterity.......Will pin-care ever get easier????? She's passed out now, thank goodness for the quiet.

Sunday, May 22, 2011

Day 10

Today Paul was on duty, so I have no PT/OT stories to tell. I was there for music therapy where Joy planned out her cat song for the upcoming talent show! Then there were loads of visitors and presents!! Joy opened a box of fun gifts from my Aunt Yvonne (Auntie-Nana), and immediately had to try on one of her new dresses!! Then Grandpa Tom and Glad came over to play Wii. (I had to get video of Tom trying to teach Glad how to Wii bowl.......) Then a new friend from Paul's job came by with gifts, and Joy's Aunt Missi and cousin Megan came over with a gift! WOW! Joy sure is blessed!! Thanks everyone!! I had to leave around 4 to get ready for the Atlanta Puppetry Guild Meeting. (Pics from that event on my other Blog.)
I hear that pin-care wasn't too terrible, and I hope Paul and Joy are sleeping soundly by now! Here are some pictures I got while I was there, and a couple taken by Paul after I left.

Saturday, May 21, 2011

Rehab Day 9

Low key weekend schedule. Paul was with her during PT/OT/Group, so I can't report on that. Nothing traumatic happened. I got here in time to visit with the therapy dogs from Happy Tails. So CUTE!!! Paris, a tiny long-haired beauty, licked Joy like crazy! Then we played Wii, Raging Rabbids in the Zone, and stayed for the "Gator" party. University of Florida alumni hosted a night of crafts, face painting, cookie decorating, and games. Joy did everything, then up to the 3rd floor activity room for some computer games. She was sitting so upright, she could roll up to the table normally, not sideways! Then dinner, and a bandage change on the incision stitches. Now she's doing paint by numbers while strapped into the CPM. Still have pin-care later. It's odd that me and Paul are here at the same time. Room seems smaller....

Happy Tails Pet Therapy

Always fun to pet the cute pups that come to visit!!! Joy even got kisses on the chin!

Pulled a tooth!!!!!

Friday, May 20, 2011

Rehab Day 8

It's 3:45p.m., so I can only write about the day so far. Dr. Flanagan stopped in at 8 a.m. and said we can wrap the pins even tighter!(Taut like guitar strings.) Joy awoke to find a wrapped present from Aunt Diane, and she happily opened an art kit! She painted 4 magnets already today!! Thanks Diane! Joy seemed to enjoy the group exercise activity. When I returned to get her they were hitting the beach ball and laughing! During the next PT session we taught another therapist how to play Spot-It. They all LOVE that card game and want to buy it!They wanted Joy to get some walking in, so we headed towards the room. I was ahead of Joy with the wheelchair and she was practically running after me to catch up and sit down. It would've been funny if she wasn't in tears at the time..... For OT they are planning to bake cookies with Joy next week! She got to explore the kitchen and look for all the stuff they might need to make cookies. Fun, and she was up and walking and using her grabber to get stuff. Then lunch break, more painting and Wii. After lunch the PT took us outside to the putt-putt green and Joy hit a few balls and enjoyed the fish pond and the sunshine. Back upstairs for some Uno with her group, then the weekly wrap-up where all the kids meet in the gym and discuss what they did this week, and their goals for next week. Joy was too shy to speak, but managed to say "Bake cookies" as her goal for next week. Before the Uno game we'd gone quickly down to The Zone for the Lowe's building workshop. In 15 minutes Joy hammered together a little putting hole. We took a birdhouse to make later. When we went back down later, the Lowe's folks were gone, and hadn't left any hammers as they'd promised.....Joy was crushed. Luckily, we ran into one of our PT's and she said we could borrow a hammer from the toolbox in the gym. Joy happily hammered her birdhouse together in the room. Whew. Now she's painting it. Waiting for daddy to arrive (Not till 9 probably.....) and watching Oprah. So far, a pretty good day! No screaming and only a few tears.

Thursday, May 19, 2011

Rehab Day 7

Joy began her day in PT by rolling over and laying on her right hip! She maintained it without too much pain for a good while! She didn't think she could do it, I'm glad she did! Our scheduled car-seat consult didn't show, so we had a break before group exercise. I asked if parents had to stay and was told to take a break! Good time to check e-mail and clean room....Joy had fun lifting weights and hitting the beach ball! Next Joy had more PT to work on her thigh muscles and bend her knee. There were tears during the Dr.s rounds, so pain meds timing before PT will be looked at, and an early pill was immediately brought. Next was OT, and we played Skip-Bo while Joy sat up unassisted. Next was supposed to be lunch with her peer group, only nobody else showed up! I'd gone to fetch an amazing salad for lunch, and missed the whole thing. Came up to find her sitting at the nurses stand!!! Rescued her and we had a nice long break to play Wii and draw fashion designs, and a nap for mommy! The next round of PT Joy decided to walk there! It's a long way down the hall, but she made it! Then she worked on bending her knee, and tried to play on a Lite Brite. Her day ended with a peer group activity for kids only, so I got another break! At 6 we went to the Zone downstairs for a make your own pizza party and played Skip-Bo till Paul got there and I came home for a few hours. Stinkles is blocking the computer screen as I type..... Oh, forgot to mention a brief trip to the 1st floor craft room for a quick craft activity. It was announced, and nobody knew where it was! When we found it empty (except for the 6 volunteers!!) we mentioned the need to clarify the announcement. Hope some showed up after we left. Joy enjoyed making an eye mask and a sun calendar.I had Paul send me a pic of he and Joy for today's collage. We seem to be passing like ships in the night, and I keep forgetting to snap pics of daddy in action ( cause I'm outta there too fast!!) :)

Wednesday, May 18, 2011

Rehab day 6

Our day didn't start till 10 with small exercise group, but we managed to be late to that cause we had a visit from the team Doctor. She is concerned about Joy's bladder (after witnessing a little leakage incident during the morning transfer to the wheelchair). They want to ultrasound her empty bladder to try to figure out the cause. Then some OT with Wii, PT walk down the hall, some bleeding pinsites and crying.......then a break for lunch, only our lunch didn't arrive?!? Finally gave Joy a lunchable so she could eat before our next thing. More occupational therapy where Joy mastered the sock-assist device, and got a grabber velcroed to her chair. More walking in the halls with PT, a break, then we were late to the next round of PT due to a lengthy, productive, potty break! The last PT session of the day went well. Wii flying distracted her from the pain as her thigh muscles were made to move a little. As she was getting back into the wheelchair, I wanted her to show-off her new skill from OT, using a stick/loop to control her own left leg as it raises and lowers during transfers. I ran to get it, and happily handed it over. Seconds later Joy is SCREAMING because she somehow lost control and bent her knee back really fast. She was still wailing as I rolled her into the schoolroom 15 minutes late. I finally had to excuse myself to go cry alone, and the teacher said to shut the door as Joy made known her distress. 15 minutes later I returned and helped Joy finish a poem about Stinkles. (Will post's with the teacher) She wasn't yet happy, but quiet at least. She had her dinner,(two ice packs on knee and hip) a quick nap for me, then off to the kids concert downstairs in The Zone. Not a huge crowd, but fun. Paul met us there around 7:15 so I could run to choir practice. Paul later tried to do pin-care himself, but the nurse took over, didn't think daddy was "cleared" to do it.....he's been doing it for a month! I arrived back at the room around 1A.M. to find them both asleep. Sent Paul home for the night and I'm gonna try to turn in soon......but I now have a VCR set-up, and want to watch the ANTM finale!!!

Tuesday, May 17, 2011

Rehab Day 5

Lots of fun and progress today! All the PT/OT/school/group activities went well this morning. Joy walked a long way down the hall, and only cried on the way back....she used the new bedside potty chair instead of the bedpan, she had her first two peer group activities, which were fun. Good to interact with the other kids. Then after she was done with her busy day, her best friend Briley (and brother Ty) came over!! We all went down to see the cute doggie visitors, and showed them all the fun hospital attractions. I got to meet with the whole team of caregivers for Joy, and ask questions, and found out we are there for two weeks! Pin care was fine too. Whew. I left her playing Wii (while strapped into the CPM machine), in her daddy's capable care. Now to watch The Biggest Loser on video.....and relax at home! Just have to remember to sleep.

Monday, May 16, 2011

Clown visit today!!

Day 4....Monday

Busy, productive, fun, lots of good things happened today! First, the dressing on her split incision stitches was changed, and all is well under there....Then the first P.T. session involved playing Wii! Always a plus! I french braided Joy's hair, very cute! She got to go to the activity room and play on her favorite game, then more Wii during P.T....she killed a lot of "Mii's" while the therapist moved her knee, and she was sitting up normally at the edge of the platform, and wasn't in too much pain! I think her knee got to 65 degrees?! Joy finally let us try ice on her knee, I think she likes it! She did very well today, and got rewarded with yet another plush pussycat from the gift shop.....We had a great bowling game during P.T. too, I bowled a 199!!! I got to watch Oprah in the activity room while Joy happily played her games, then down to "The ZONE" tonight where Joy did some stained glass crafts and played more Wii. (I need to invest in Wii, really amazing during this time! All the kids love it!!!) Then paul showed up to take over, and I came home to have a break. Back in the morning for another busy day! Oh! Can't forget to mention the lovely and uplifting visit from Atlanta Clown Care today too! I really love and support those guys and gals. They make kids smile during the rough stuff. Not an easy job.
Also forgot to mention the visits from the social worker, case manager, teacher, nurses, aides, Occupational therapists, physical therapists, the list goes on and on. Dr. Flanagan came by too, just to check on Miss Joy. We sure are lucky to be exactly where we are. Soaking it up while we can.......