With the help of many donations that we had over the past six months Lily is able to attend Ability Camp Inc. for her third summer!! Our adventurous drive here on Saturday and Sunday was very long and crazy, being just me and Lily, Luke, & Liberty this time, but we finally made it to camp on Sunday around 2pm.
Friday/ August 29th 2008~ Sorry I have not posted in over a week. I had trouble getting online here. Last weekend we took it easy. Lily's seizure activity has been next to none, one or two during the week total! You would think that means a great week in class but for some reason her body is moving so much more towards the end of this week. Lily has uncontrolled movements (Ataxia) that keep her from focusing and keeping her body still to move properly. So today was probably the hardest I had seen her fight to not work during her individual program. On Wednesday when I went in for individual she did really well she worked so hard towards the end she started to fall asleep. She stood at the wall holding on to ladder back chairs for 15 minutes. Then she walked thru ladder boxes on the floor and she needs to step up about 4 inches into it which she has never been able to do. I usually place her feet but she was able to get her right foot over and in the box!! Yeah Lily~maybe we will have the left one foing the same before we go home!
Thursday/August 21st 2008~ Today Lily finally ate all of her lunch! Feeding is something we also have been working on in school, at home, and here at camp she had gotten really good over the last school year and then got sick the month of March and most of April. So feeding had really been on the back burner lately. Lily is primarily g-tube fed and can, if she is willing, take pureed foods by mouth. And up until this past year would not open her mouth and or come for a spoon willingly. Now I know if she wants to eat she will come mouth opened for a spoon of pureed whatever. The beginning of the week was ok. All the children have been passing a cold around the camp so she was a bit congested and not wanted to even wake up for class in the morning. I think it is finally passing or she would not have eaten her lunch today if she was stuffy. The first couple of days of the week she was seizure free!
Saturday/August 16th 2008~ Thursday was a great day no seizure before class as a matter of fact no seizure until the evening. Friday on the other hand was crazy she had 5 total. It turns out that Lily has some molars coming in and we had a little issues with that. So once again we are going to take it easy this weekend. I ordered a new pair of orthodic sandle type of shoe for Lily so we are trying those out also!
Wednesday/August 13th 2008~This week seems much better than last. We rested over the weekend so Lily would be fresh and well rested for week #2. The children seem to be adapting well to the 6 hour therapy days. Lily has been having one seizure at the same time each morning right before class begins this week, I just want to scream it is hard for me (and her I am sure) to see her start her day like that especially when I know how tough the day is going to be. SO everyone who is reading this keep your fingers crossed for Lily to not have a seizure tomorrow morning before class. Sometimes Lily can still do the stretches that the parents help do before each class day begins and sometimes she just wants to fall asleep. From what the conductors tell me she still is having a good day after having that morning seizure. I did go into the classroom on Tuesday for 45 minutes to do the individual program with her. Parents can sign up 1-2 times a week to go in and assist with doing the childrens individual exercises. Then the parents know what they were working on while in class and can do those exercises with them at home. She did well and showed me somethings I didn't know she could do.
Wednesday/August 6th 2008~ Lily is still adjusting to the rigorous routine of 6 hours of intense therapy a day. Not to mention not seeing me for any of that time,that probably affects me more than ther though. She did have a seizure before class the first day but didn't fall asleep and still did the best that she could considering. She also had one during class the second and one today.
She seems like a different child this time around she has definately changed since our last visit but I just can't put my finger on the change. It is like she is more aware or something. Ready and able to learn even more this time around. So cross your fingers everyone and wish Lily luck to be the best that she can be.
Thank you to everyone to came out in support of our daughter Lily for the Beef and Beer June 16, 2007 at Mangia by the Green. And to those who gave there support but were unable to attend. It was a fun time and big success. We now have enough to send Lily back to Ability Camp this summer! Camp combine with her new seizure treatment gives up great hope for much progress in gross motor skills this summer. Please check back I will keep everyone updated on her progress in Canada!
Thank You Again
The Putney Family
Tony, Carie, Lily, Luke, & Liberty
August 1, 2007
Well we are here at camp and Lily is still trying to get used the vigorous routine. The 3 day trip here alone wore her out. Parents were allowed in the class for the entire first day which was Monday. But from now till the end we only go in to stretch them in the morning. Class starts at 8am sharp parents are permitted to go in for the first part to help with stretching. Then we leave and the kids stay in there all day till about 1:40pm. They do get many potty breaks and a lunch break. Once or twice a week parents may go in during individual time, where the conductors create a therapeutic program that varies for each individual child. She has had quite a few seizures since we have been here so that alone makes it hard for her to stay awake let alone work her body for 5+ hours. I am sure by the end of the week she will have gotten used to the routine. Check back for more camp news! Carie
August 3, 2007
Thursday, Lily did really well in class they told me. Only one seizure early that morning-then one in the evening after class (probably because she was tired). We will be going to the chiropractor while we are here at camp also, everything helps. Lily didn't sleep to good last night so I hope she has a good day in class today-she also threw up her intire tube feed this morning. I think since she is a bit conjested it made her vomit. I will write more later today.
August 8, 2007
Sorry I have not been able to get on line the past 5 days. We lost internet connection out here in the sticks. So now camp is back on line, yeah!! Lily is so much better than she was over the weekend. Her seizure activity has lessened and she can now concentrate more in class. So this week will be a good week for her. When she has less seizures her body is more all over the place which makes it harder for her to do simple things. Today she wore a compression type of suit in class today to help with that. She is also more vocal with less seizures so she is making some really good vocalizations. I will write more when I can.
August 10, 2007
Well it is Friday and two weeks of camp are over, it went by so quickly. Lily had a good day on Thursday and another good day today. I didn't get to much feedback today when they brought her out I just was told she had a good day. She is so happy to see me when she comes out of class she gives me millions of kisses. She had an appointment with the chriopractor yesterday, we will contiue with that once or twice a week until the end of camp. This weekend we may go see a movie or go to something called the dragon boat races just to get out and go somewhere.
August 16, 2007
Sorry these entries are becoming further and further apart. But as the mothers here get to know each other better we talk and find out about everyone's own individual story. And if I am lucky I learn a think or two that can help me be the advocate I need to be for Lily. There are so many smart, wonderful and caring moms & grandmom's here this year. Our morning starts out by taking Lily into class in the morning at 8am I stay in there with her, all the moms do, and we stretch the kids for about 30 minutes. Being instucted by the lead conductor. Then I leave her 
I know she is in capable hands- but it is still hard. Then I come out and staighten our room clean her feeding items. Play with her brother, sister, and cousin for a bit. Then it is off to the kitchen to fix her lunch. I tend to wait out in the kitchen for the next half hour so I can see the trays come out so I can see if she ate well that day. Feeding for her is extemely difficult so she is primarly g-tube fed. Then if I am signed up I go into the classroom and work on her individual program with her. This is a part of the day that is layed out specifically for each individual child. For Lily she will try sitting on a stool all by herself and if you know Lily this is not such an easy task for her. And we work with a walker with her but her hands need to be mitted to the walker since she has trouble with holding on to things. I only get to go in one day a week usually it is a treat to go in and see how well she does twice a week. Then about a half hour after that all the kiddies come wearly out to their loved ones, around 1:40 pm. While the conductors sing "Good bye LILY, Good bye LILY, Good bye LILY, well see you here tomorrow."
August 23, 2007
So this is week 4 and it is nearly over. All the moms are working on the poster to leave up on the wall here at camp. Each session leaves one as a sort of legacy of the journey they took during the 5 weeks. Lily is doing well except for some seizures here or there which are make her really tired. I think when we get home that her VNS needs to be turned up even more. I just found out that school back in VA starts on the 4th and not the 6th like I thought. Rush, rush, rush to get back and settled and get the kiddies ready for the new school year. Next week here at camp is really busy. Parents get to sit in all day either Monday or Tuesday. Wednesday they get video taped again so you can see the difference from week 1 to week 5. Then Thursday there is parent interviews and a graduation party. And finally Friday, class is only 3 hours long so parents can get on the road and work there way home. There is one mom here who drove 27 hours from Colorado.