Monday, May 30, 2011
Sunday, May 29, 2011
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
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
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 evaluations....hot/cold 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 do......so tired! So proud of Joy!!!
Wednesday, May 25, 2011
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
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
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
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.) http://injestpuppets.blogspot.com/
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
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....
Friday, May 20, 2011
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
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
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 later...it'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
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
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.......
Sunday, May 15, 2011
Today was a good day! When I arrived after church Joy was happily strapped into the new CPM machine and painlessly bending her knee! WOW!!(Up to 35 degrees already!!!) I brought Grandpa Tom with me, and then Missi, Matt and Megan stopped by. We played Wii (funny trying to teach Grandpa Tom how to bowl!)and had a nice visit.(Love the new glasses Missi!)
We can see the lobby from the 3rd floor window, so we let Megan (6) ride down the elevator by herself to go sit with her daddy. On her second trip down I was standing and waiting to see her emerge below, but instead I hear a terrified scream from inside the closed elevator..."Aunt Heiiiiidiiiii!!!!!" Laughing, I reminded her she had to push the "1" button before she'd go down. Seconds later I saw her emerge and run to her daddy for a much needed hug. Poor baby.
Our guests left as Joy prepared for her first sponge bath. Glad to finally get some of the marker drawings scrubbed off her arms (from International night at school). She played in the activity room for a long time afterwards, even managed to sit completely upright in the wheelchair now that the bar is off the fixator! She was quite pleased with that!
Pin care was done by a different nurse, and was MUCH easier tonight! Hardly a peep out of Joy. Last night's nurse must have been really rough on her. It was a relief to not have to hear the screams.....Joy hardly has a voice today.
She's had a sleeping pill, and finally turned off the T.V. at midnite. Big day tomorrow! Full schedule of PT! Yay!!
Saturday, May 14, 2011
Joy's occupational therapist evaluation session went well. He was impressed at how Joy can dress herself ( liked our velcro modifications!), and her ability to transfer from the bed to the chair. (Still painful though!) Then Joy got to play computer games while forms were filled out and we answered questions. Then our friends Janet and Charleston came by bearing gifts!!! It's a true friend that will come visit you in the hospital! We had a lovely visit, Joy loved her gifts and I enjoyed a yummy chicken salad sandwich on flatbread from Subway! Thanks Y'all!!
PT/OT will get tougher come Monday, but for now, not too stressful.....that is, until it was time for the dreaded pin-care! The nurse had the pleasure of unwrapping, cleaning and rewrapping tonight as Joy screamed louder than I've ever heard before. I managed not to cry along, and tried to encourage her to breathe and get through it. Pin-sites look pretty red and raw, but Dr. Flanagan gave them a mighty scrub while Joy was under. The gaping hole with a new stitch looked much better! Once Joy was wrapped up, she passed out, and I tried my best to nap with her. Then daddy arrived with a Wii for the room (which he then wants to donate to the hospital...) AND a tiny TV for me so I don't have to watch the Disney channel anymore!!!!!!!! Wow!! What a great husband, huh! :) They are happily playing Wii while I get to have quiet time at home.
Aside from not getting much sleep thanks to Joy the night-owl....this morning went really well! Dr. Flanagan came in and said we could remove the stabilization bar PERMANENTLY!! Then PT got her into the wheelchair and to the gym for a few simple tests. Nothing traumatic. Then we were free to wander about for a bit. Saw some nice clowns!! Played video games in the activity room, enjoyed the crazy stacking turtles, saw the fish pond, the fountain, and shopped in the gift shop. Then back to the room for some lunch. The trouble started when Joy had to go potty, and it's tough to do in the wheelchair. Transferring to the bed was too hard, so finally the nurse and Paul lifted her up and moved her. My ears are still ringing from the intensity of the screaming. Not good, won't do that again!!!!! ACK! She's finally calm again, next session (OT) at 2.
Friday, May 13, 2011
Here we are again for a revision of Joy's "Ex-Fix". The procedure Thursday morning went well......except for a surprise reopening of an incision which required stitches. This afternoon we moved into the rehab unit on the third floor @ Scottish Rite. Didn't do too much PT today, Joy is still really sore from the workout her hip and knee got while under anesthesia! Dr. Flanagan moved Joy's leg all around, and made sure everything could still bend. It can, it'll just hurt like crazy! Joy got up and into the wheelchair for a while, and is now back in bed. Transfers were super painful and there was lots of screaming. Not to mention the trauma caused by the phlebotomist as she poked Joy in the arm for a blood sample. She says her arm STILL HURTS and it's been hours since it happened. Thank goodness she's asleep now and it's nice and quiet! Whew. Tomorrow the real fun begins.
Wednesday, May 11, 2011
Found out that Joy got accepted into the rehab program at Scottish Rite! After her external fixator revision on Thursday morning, she'll be moved to a room on the rehabilitation floor for a week of intense physical therapy. She has a lot of catching up to do since she hasn't had any PT since leaving the hospital.
Monday, May 9, 2011
Friday, May 6, 2011
Joy's first outing to school since surgery! Her friends were happy to see her! Joy loved showing off her hardware, (and freaking out some of her buddies.....) The reclining wheelchair is not a great "off-road" vehicle, but we managed the bumpy ride with only a few tears. Stayed for lunch, then a few more games, and she was ready to go home. Glad we went!!
Monday, May 2, 2011
Before Joy had her ex-fix surgery, she had one last 3rd grade field trip to attend. They were very nice to order her a full-sized School bus that had a wheelchair lift! Her classmates were excited to watch her go up the lift and into the bus, and they happily piled on the bus after her. As we were all getting settled, someone announced that the class was not allowed to ride on the "special" bus, and everyone left except me and Joy. I was never given any explanation for this sudden ruling, and the bus driver explained that his bus was designed to keep the wheelchair bound kids with their class!!! Made him mad too! So, we had the whole bus to ourselves there and back, and we made the best of it. By the way, the field trip was a tour of a sewage treatment plant......yup. Stinky!
Sunday, May 1, 2011
Here are some pictures of Joy to show how we transport her in the car. First, help her out of bed and onto walker. Load wheelchair and parts/pillows into back of car. Put EZ-on Vest on Joy. Help her lift leg into car, and slide into position.(laying flat in backseat) Buckle two seatbelts thru vest straps. Put walker in back of car. Drive carefully to destination, avoiding bumps whenever possible. When you get there, unbuckle vest,carefully help her out of car and onto walker, set-up wheelchair and pillow placement, help her into wheelchair, and strap left leg to chair with an ace bandage to ensure it won't slip off. DONE! This is why we don't get out much, but it CAN be done!!!!!