And, pictures!!!
How was camp?
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marieke
- Posts: 1627
- Joined: Fri Apr 01, 2005 6:00 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008. - Location: Montreal, Qc, Canada
- Contact:
Re: How was camp?
It was GREAT! And AMAZING! I was so happy to meet Amy in person..w e stayed up late Friday night chatting. I will post pics soon, on my blog and photobucket...
I loved meeting Carolyn (you rock!, thanks for the rides to and from the airport!) and her son Scott, Hi! And Kath and Nancy (thnaks you two for being so great and welcoming, and for the rock wall pics Nancy). I was so happy to meet the little kids abd teens, it was nice to feel 'normal' about my arm. I never realized how much I try to hide it or camouflage the movements I do in public, like when I eat or walk. It's not very bvious to people I know, but for the first time I felt like everyone else and knew that no one would stare or wonder if my arm was broken!
I climbed a rock wall (well, got off the ground, lol) went swimming, climbed that darn hill 3x a day to get to the room, hehe... I should have taken a pic of that hill! If anyone has one, let me know.
Can't wait for Camp 2009 in Florida!
Marieke 931, LOBPI)
I loved meeting Carolyn (you rock!, thanks for the rides to and from the airport!) and her son Scott, Hi! And Kath and Nancy (thnaks you two for being so great and welcoming, and for the rock wall pics Nancy). I was so happy to meet the little kids abd teens, it was nice to feel 'normal' about my arm. I never realized how much I try to hide it or camouflage the movements I do in public, like when I eat or walk. It's not very bvious to people I know, but for the first time I felt like everyone else and knew that no one would stare or wonder if my arm was broken!
I climbed a rock wall (well, got off the ground, lol) went swimming, climbed that darn hill 3x a day to get to the room, hehe... I should have taken a pic of that hill! If anyone has one, let me know.
Can't wait for Camp 2009 in Florida!
Marieke 931, LOBPI)
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Tanya in NY
- Posts: 935
- Joined: Mon May 03, 2004 10:51 am
- Injury Description, Date, extent, surgical intervention etc: I am Mom to Amber, injured at birth. I serve on the Board of Directors for UBPN, and am a labor/delivery nurse, too.
- Location: NY State
- Contact:
Re: How was camp?
Camp was fabulous, exhausting, a bit confusing trying to keep everyone straight since this was our first camp, exciting, busy busy busy, and encouraging in my mind. A wonderful experience all around!
My daughter is almost 5 years old and really hasn't had the opportunity to meet others with BPI. She immediately bonded with 2 little girls (Caroline and Maggie) and away they went at every opportunity to play together. I look forward to return camps and seeing the three of them hopefully grow together and continue to bond. Caroline even started a game of playing "sisters" with Amber which touched my heart.
To see the varying degrees of injuries was a shock to my 12 year old son, and we had to have a discussion about it. He expected to have everyone's arm function similarly to Amber's which is quite functional. It was an eye opener for a pre-teen...and this was a great experience for him. By the end of camp, he had made some friends with some children with and without BPI that he was quite excited about. He commented that he was amazed at how some people with a severe injury do things just like him. He thought they were amazing individuals!
Rock walls (yes, my big tush did make it up the easy side huffing and puffing away and I have a picture to prove it!), go-karts, zip-lines, mountain bikes, sports clinic, "Reptile Man", Junior Ranger badges earned by children, Cheryl Beck talking to Moms (lots and lots of tears in that session), discussion groups (TBPI, OBPI, Sibshop, Dads, and others that I'm not thinking of off the top of my head), a medical panel and a therapist panel with an aquatic therapy focus and demonstration, and I know I'm missing lots of things, but I'm still feeling a little tired with the time difference and traveling with the kids on my own.
I was affected the most by how much pain seemed to be an issue for many children/adults. I asked about this during one of the discussions and got some good feedback...thank you to the panel who answered...I appreciate it. I also spoke with a couple pre-teen girls who were experiencing pain and were more than eager to talk with me about it. Thank you ladies for answering a Mom's questions.
Closing ceremony with the campfire. We all sang while Rich Looby played his guitar and the children carried the trees in that they had decorated during arts and crafts. Names of those who had donated money and in memory of who it was for were read as well. Everyone got a prize by the end of the ceremony (great idea)!
Free time was available for people to network and children to run around and play. Indoor pool was available at various times which was a hit! The weather was wonderful (can you believe it?!) Even though there was free time, I still felt like I couldn't find enough time to speak to all those I wanted to because there was just so much to say to everyone! It was such a joy to visit with everyone.
These are the impressions/experiences that we had while at camp. We enjoyed ourselves immensely and plan on returning for our second camp in Florida in 2009!
Tanya in NY
Amber's Mom, ROBPI, almost 5 years old
My daughter is almost 5 years old and really hasn't had the opportunity to meet others with BPI. She immediately bonded with 2 little girls (Caroline and Maggie) and away they went at every opportunity to play together. I look forward to return camps and seeing the three of them hopefully grow together and continue to bond. Caroline even started a game of playing "sisters" with Amber which touched my heart.
To see the varying degrees of injuries was a shock to my 12 year old son, and we had to have a discussion about it. He expected to have everyone's arm function similarly to Amber's which is quite functional. It was an eye opener for a pre-teen...and this was a great experience for him. By the end of camp, he had made some friends with some children with and without BPI that he was quite excited about. He commented that he was amazed at how some people with a severe injury do things just like him. He thought they were amazing individuals!
Rock walls (yes, my big tush did make it up the easy side huffing and puffing away and I have a picture to prove it!), go-karts, zip-lines, mountain bikes, sports clinic, "Reptile Man", Junior Ranger badges earned by children, Cheryl Beck talking to Moms (lots and lots of tears in that session), discussion groups (TBPI, OBPI, Sibshop, Dads, and others that I'm not thinking of off the top of my head), a medical panel and a therapist panel with an aquatic therapy focus and demonstration, and I know I'm missing lots of things, but I'm still feeling a little tired with the time difference and traveling with the kids on my own.
I was affected the most by how much pain seemed to be an issue for many children/adults. I asked about this during one of the discussions and got some good feedback...thank you to the panel who answered...I appreciate it. I also spoke with a couple pre-teen girls who were experiencing pain and were more than eager to talk with me about it. Thank you ladies for answering a Mom's questions.
Closing ceremony with the campfire. We all sang while Rich Looby played his guitar and the children carried the trees in that they had decorated during arts and crafts. Names of those who had donated money and in memory of who it was for were read as well. Everyone got a prize by the end of the ceremony (great idea)!
Free time was available for people to network and children to run around and play. Indoor pool was available at various times which was a hit! The weather was wonderful (can you believe it?!) Even though there was free time, I still felt like I couldn't find enough time to speak to all those I wanted to because there was just so much to say to everyone! It was such a joy to visit with everyone.
These are the impressions/experiences that we had while at camp. We enjoyed ourselves immensely and plan on returning for our second camp in Florida in 2009!
Tanya in NY
Amber's Mom, ROBPI, almost 5 years old
Tanya in NY
Amber's Mom, ROBPI, 13 years old
Amber's Mom, ROBPI, 13 years old
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marieke
- Posts: 1627
- Joined: Fri Apr 01, 2005 6:00 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008. - Location: Montreal, Qc, Canada
- Contact:
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richinma2005
- Posts: 861
- Joined: Thu Sep 29, 2005 12:00 pm
- Injury Description, Date, extent, surgical intervention etc: Daughter Kailyn ROBPI, June 14, 1997.
Surgery with Dr Waters (BCH), April 1999 and in February 2012
2 more daughters, Julia (1999), Sarah(2002) born Cesarean.
Re: How was camp?
Camp was great! Although I had some errands to do while there, Karen McClune and Nancy Birk deserve a standing Ovation for again putting together a wonderful experience for our communty.
From the camp t-shirts, gift bags and parker brothers games awaiting our campers in their rooms, to the wonderful panels and roundtables organized by the BOD. The camp staff were pleasant and responded great to any of our requests.
The planned activities and just the free time to walk around and speak with other famailies was a great balancing act. The food was camp food, and personally, I could have slept on a rock at the end of the night so the beds were fine with me!
FOr my daughter, I feel it was her best camp experience by far. She met old friends like Emma F., and made great bonds with new girls like Valen D. and Alora G. Their ages were 8,9,10 and 11, and they coined themselves the four muskateers. They explored the camp themselves, fell in love with horses and kittens, and walked around together like they were best friends from long ago. They encouraged each other in the activities like rock climbing and swimming and ate meals together. (I enjoyed talking with their mom's Raina and Shannon also!)
The panels I got to go to were great, the kids talks were entertaining with many of the kids being able to ride the tortoise that the reptile man brought! He even brought cobra's and rattle snakes that had their venom removed, and aligators and such. My daughter had a python on her neck!
The sports demonstrations were great, and the young adults from our community also deserve recognition for standing up and showing our kids what can be done if they want to do it.
Smores at the campfire and a group sing-along approached the ending of the camp. We tried to get a pic of all the BPI attendees (great Idea Kim S!), and had some success, but next camp that will have to be part of the program.
I look forward to the next camp in Florida, and hope it will be as rewarding for my daughter as this one was.
Richinma
From the camp t-shirts, gift bags and parker brothers games awaiting our campers in their rooms, to the wonderful panels and roundtables organized by the BOD. The camp staff were pleasant and responded great to any of our requests.
The planned activities and just the free time to walk around and speak with other famailies was a great balancing act. The food was camp food, and personally, I could have slept on a rock at the end of the night so the beds were fine with me!
FOr my daughter, I feel it was her best camp experience by far. She met old friends like Emma F., and made great bonds with new girls like Valen D. and Alora G. Their ages were 8,9,10 and 11, and they coined themselves the four muskateers. They explored the camp themselves, fell in love with horses and kittens, and walked around together like they were best friends from long ago. They encouraged each other in the activities like rock climbing and swimming and ate meals together. (I enjoyed talking with their mom's Raina and Shannon also!)
The panels I got to go to were great, the kids talks were entertaining with many of the kids being able to ride the tortoise that the reptile man brought! He even brought cobra's and rattle snakes that had their venom removed, and aligators and such. My daughter had a python on her neck!
The sports demonstrations were great, and the young adults from our community also deserve recognition for standing up and showing our kids what can be done if they want to do it.
Smores at the campfire and a group sing-along approached the ending of the camp. We tried to get a pic of all the BPI attendees (great Idea Kim S!), and had some success, but next camp that will have to be part of the program.
I look forward to the next camp in Florida, and hope it will be as rewarding for my daughter as this one was.
Richinma
Re: How was camp?
We really enjoyed our camp experience! I loved seeing Ian get excited about sports(volleyball & tennis). He is typcially a shyish boy who keeps to himself but the sports game him reason to approach other kids. Most of them were really great about playing with him even though he wanted them to play by his rules and go easy!
He happen to observe another child showing her night splint and he exclaimed to me that it was just like his! And he thinks he could really get some used out of wearing it while playing volleyball and tetherball as well.
I enjoyed meeting and chatting with other moms and placing faces with names!
And I really needed the kick in the pants that I received from the medical and therapy panels to get it back into gear with more aggressive therapy options. Now I just need to figure out how I am going to do that along with the rest of my life but I believe it is necessary. So now I need to re-educate my brain since I had let my BPI knowledge slide!
Thanks for everything!
Blessings,
Kristie & Ian
He happen to observe another child showing her night splint and he exclaimed to me that it was just like his! And he thinks he could really get some used out of wearing it while playing volleyball and tetherball as well.
I enjoyed meeting and chatting with other moms and placing faces with names!
And I really needed the kick in the pants that I received from the medical and therapy panels to get it back into gear with more aggressive therapy options. Now I just need to figure out how I am going to do that along with the rest of my life but I believe it is necessary. So now I need to re-educate my brain since I had let my BPI knowledge slide!
Thanks for everything!
Blessings,
Kristie & Ian
Re: How was camp?
Man, I wish we could have been there! Camp sounds like such an AMAZING experience!
I'm so glad you all had a good time! Marieke, thanks for sharing those cool pics!!!!!
I'm so glad you all had a good time! Marieke, thanks for sharing those cool pics!!!!!
Re: How was camp?
Mica:
I know you wanted to come to camp but it just wasn't in the cards for you this year.... well, put Florida 2009 on your calender now!!!
I wasn't sure of what to expect, as Washington, DC had been so much work for those of us on the Board.
This was AMAZING!!! We found, I think a great balance between things to do and the "down time" that so many people asked for (I wanted it as well!). I made so many good friends.
Yes, the mom's session was a weep-fest, but where else can we do that and not be embarrassed? I know from my hubby that the Dad's shop that Rich ran was really great. Though no tears were shed there, they got to express some emotions that help them and there were no wives around to get upset.
Andrew hung out with a bunch of teenage boys, both injured and not...the basketball games were apparently legendary. Thank you to Keith for showing me a method of dribbling with your affected hand. My husband became got in touch with his 15 year old self as he participated in these basketball games...he is no doubt paying for it today!
Isabel even found her way to some of the girls, and was a big help in the arts and crafts--just loving the little kids.
Juliana was my biggest surprize, as she made friends (she tends to be shy at first) and even attended the injured only workshop and came away with very valuable information. (Thank you Ryan) Her friendship with Hope was very cute, capped off by their participation in the therapy workshop.
I met so many people, and actually had the time to talk to them and get to know them.
Since I went to sleep away camp for 10 years and was a counselor for a few after that, the food was, in the words of my kids (all sleepaway campers) "Camp Food". Though I, too, was so tired I would have slept anywhere, my own sweet bed felt soooooooooooo good last night!!
Night time go-karts are a BLAST!!!
To my "Go-Kart Girls", I will always cherish our time together and I better be finding emails soon!!!!
Nancy and Karen worked so hard and it was worth it. What a wonderful, wonderful event. Thank you both. And my co-Board members... you all did a fabulous job. Rich, you can carry my bags anytime. John, please come get me at the airport! Lisa, you can hold my box of tissues--please! Kath and Judy welcomed all with a smile and word to the injured kids. Courtney ran a fabulous bpi group and Amy (my first go-kart pilot!) showed the kids that sports are more than an option-but a reality. Julia made enough runs to the airport that her car now goes there automatically!
Thank you all and thank you to the families that came to camp and made this such an amazing experience.
claudia
I know you wanted to come to camp but it just wasn't in the cards for you this year.... well, put Florida 2009 on your calender now!!!
I wasn't sure of what to expect, as Washington, DC had been so much work for those of us on the Board.
This was AMAZING!!! We found, I think a great balance between things to do and the "down time" that so many people asked for (I wanted it as well!). I made so many good friends.
Yes, the mom's session was a weep-fest, but where else can we do that and not be embarrassed? I know from my hubby that the Dad's shop that Rich ran was really great. Though no tears were shed there, they got to express some emotions that help them and there were no wives around to get upset.
Andrew hung out with a bunch of teenage boys, both injured and not...the basketball games were apparently legendary. Thank you to Keith for showing me a method of dribbling with your affected hand. My husband became got in touch with his 15 year old self as he participated in these basketball games...he is no doubt paying for it today!
Isabel even found her way to some of the girls, and was a big help in the arts and crafts--just loving the little kids.
Juliana was my biggest surprize, as she made friends (she tends to be shy at first) and even attended the injured only workshop and came away with very valuable information. (Thank you Ryan) Her friendship with Hope was very cute, capped off by their participation in the therapy workshop.
I met so many people, and actually had the time to talk to them and get to know them.
Since I went to sleep away camp for 10 years and was a counselor for a few after that, the food was, in the words of my kids (all sleepaway campers) "Camp Food". Though I, too, was so tired I would have slept anywhere, my own sweet bed felt soooooooooooo good last night!!
Night time go-karts are a BLAST!!!
To my "Go-Kart Girls", I will always cherish our time together and I better be finding emails soon!!!!
Nancy and Karen worked so hard and it was worth it. What a wonderful, wonderful event. Thank you both. And my co-Board members... you all did a fabulous job. Rich, you can carry my bags anytime. John, please come get me at the airport! Lisa, you can hold my box of tissues--please! Kath and Judy welcomed all with a smile and word to the injured kids. Courtney ran a fabulous bpi group and Amy (my first go-kart pilot!) showed the kids that sports are more than an option-but a reality. Julia made enough runs to the airport that her car now goes there automatically!
Thank you all and thank you to the families that came to camp and made this such an amazing experience.
claudia
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Carolyn J
- Posts: 3424
- Joined: Tue Apr 06, 2004 1:22 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too. - Location: Tacoma WA
- Contact:
Re: How was camp?
THANK YOU, Claudia, for the Hercules-like job you did of scheduling Go Kart times. I just know that was NOT easy to do.
THANK YOU all Members of the Board. Each of you made this
experience so valuable and healing for the BPI kids. Moms and Dads, I am soo proud of you for letting it all hang out to help one another in the closed "only" workshops sessions; you surely did alot to help one another and Cheryl with her Research.
HUGS all around,
Carolyn J
LOBPI/69
THANK YOU all Members of the Board. Each of you made this
experience so valuable and healing for the BPI kids. Moms and Dads, I am soo proud of you for letting it all hang out to help one another in the closed "only" workshops sessions; you surely did alot to help one another and Cheryl with her Research.
HUGS all around,
Carolyn J
LOBPI/69
Carolyn J
Adult LOBPI
Adult LOBPI
Re: How was camp?
I have to agree with Rich, this was- BY FAR- the best camp experience for Emma. She finally let go of mom and dad enogh to enjoy what camp had to offer and was able to really bond with other girls. She did a little of this last time, but this time she was almost completely "doing her own thing", but was kind enough to check in with either myself or her dad and let us know where she was/would be. Yes, I am still a little overly cautious, but I think I did pretty good 
As always, I enjoyed talking with everyone I could and all that camp had to offer. I do have some pics, but I haven't even reviewed them yet or gotten them off of my camera.
School starts here tomorrow, so we are trying to get organized and make sure we have everything we need for classes beginning tomorrow.
Rich, please tell Lisa and Sara and Julia that we missed them! Tell Kailyn that Emma misses her (and the rest of the muskateers) & thanks for being an alternate parental figure for Emma this weekend.
Peggy
(Emma's mom, right OBP!- 11 yrs)
(Joel's mom, Transient LOBPI - 13 yrs)
As always, I enjoyed talking with everyone I could and all that camp had to offer. I do have some pics, but I haven't even reviewed them yet or gotten them off of my camera.
School starts here tomorrow, so we are trying to get organized and make sure we have everything we need for classes beginning tomorrow.
Rich, please tell Lisa and Sara and Julia that we missed them! Tell Kailyn that Emma misses her (and the rest of the muskateers) & thanks for being an alternate parental figure for Emma this weekend.
Peggy
(Emma's mom, right OBP!- 11 yrs)
(Joel's mom, Transient LOBPI - 13 yrs)