Some more Communication Book Notes.....

(10/7/97) A new nurse working with me wrote this: "Thank you for the welcome note Pat-it felt great. (Primary nurse) Mom & Dad were very welcoming also. I'm usually a little apprehensive the first night on a new job-I don't think it has ever been so pleasant. I think I'll fit right in "Jared's team". (My note: These kinds of things is what makes the nurses taking care of me in our home so worthwhile. This is one of the things I loved about life.....genuine KINDNESS!)

(1/14/98) Mommy wrote a note that said: "Jared loves his new toy he got for Christmas. It's the TV Teddy. If you play a video, play TV Teddy's videos once in a while. TV Teddy interacts with the video. Jared likes to watch Teddy and the video....huge smile on this boy's face." (My note: I remember Mr. Teddy...he really made me laugh...he was another good friend!)

(6/6/98) Daddy wrote a note that said: "Hi. It's Dad, this is my bimonthly note. Jared and I had a great time alone tonight. Jared got the slow tour of the house tonight instead of hanging out in the dining (Jared's) room. First, we checked out his other room (upstairs). He loved it. Then to the bathroom and back room. Then he got his first waterbed experience. He realized he could make the bed move by kicking-he didn't stop. (Sorry about the sloppy writing, but frankly I don't care.) Dad" (My note: Oh...just thinking of me and my dad together gives me so much JOY inside....that's what it was always like for me with my dad around.....HAPPY, HAPPY, JOY, JOY...Daddy showed me that also.....REN & STIMPY!)

(7/2/98) Mommy wrote a note that said: "Be careful putting Jared in his new wheelchair. I almost dropped him tonight when I stuck him in it." (My note: MOMMY"S CRYING CUZ SHE"S THINKING.......Awwwww Mommy....its OK.....you always did try your best with me....I know right now that I'm not physically with you and I see that you beat yourself up for all the times you tell yourself....IF ONLY I TRIED A LITTLE HARDER......I hear you say that all the time now....YOU DID YOUR VERY BEST AND I LOVE YOU SO MUCH FOR THAT. I WILL ALWAYS BELIEVE IN YOU....YOU WERE AND ARE MY MOM WHO BELIEVED IN ME TOO....IT WORKS BOTH WAYS. I LOVE YOU...STOP CRYING OVER ME MOMMY....I'M REALLY OK....YOU SHOULD SEE IT.....IT'S BEAUTIFUL UP HERE!)

(9/11/98) Daddy wrote a note that said: "Hi. Dad here. Mom's out for the the night but will be back before 3 tomorrow. Jared had a good night. He spent about an hour and a half outside and then he relaxed with me for the rest of the night. See ya. Eric." (My note: LOVE LOVE LOVE Daddy and I time!)

(1/10/99) Mommy wrote a note that said: "Jared out in recliner until about 8pm. Earlier, Jared pulled his tubing off of himself and threw it on the floor. Could it be that he doesn't want it anymore?! Little Stinker!" (My note: Yes Mommy....and No Mommy...I didn't want it and I did...but I enjoyed PLAYING THESE GAMES with you!)

(2/3/99) Mommy wrote a note that said: "Jared has been disconnecting himself a lot lately. He pulls the tubing off and waves it around like it's nothing---and laughs about it! Keep an eye on him now, more than usual, because he will pull a fast one!" (My note: HAH...Gotta love it!)

(4/20/99) Mommy wrote a note that said: "Jared out on recliner until 6:30pm, and then he sat in Daddy's lap on recliner and then he was on the floor with me sitting between my legs with very nice head control! Also, Jared will be starting school on Tuesday, May 11th. He will go 3 days a week (Tuesday, Thursday and Friday's) from 9am-2:30pm. We are trying a full day with him for at least a month just to see how he tolerates it. If it's not for him, we will take it down to half a day (from 9-11:30). He will have Music Therapy on Thursdays at school. Eric and I will be going with him on his first day. Thanks Mom & Dad." (My note: What a time that was...a NEW chapter in my life....SCHOOL...and I was so glad that Mommy and Daddy came with me for my first school experience!)

(5/11/99) Mommy wrote a note that said: "Jared tolerated his first day of school very well. However, the last hour of the day, he started getting fussy. He also didn't like the "pudding painting" that he did while there. He didn't like putting his hands in the pudding and he definitely didn't like rubbing his hands in it. Once he gets used it (stuff like that), it may not be so bad for him. He also sat on the bean bag chair for awhile and it was relaxing for him-so he was kind of lazy in it. We put him in his wheelchair and he went outside the school and we put him in the wheelchair swing. After that, he started getting tired. Overall, good day, but somewhat long for him." (My note: I still loved trying new things.)

OK...there are still more notes I want to tell you about...I know there are so many of them.....but these are the days of my life...they need to go somewhere so I think this is the best place for them right now.....come back soon!

Communication Book Notes written by my Nurses.....

(7/19/96) Supervisor that came out to the house wrote: "Jared's weight was 16 lbs. Mom had no concerns. Mom told me how good of a job we're all doing. Gerard is as cute as ever!" (My note: My name is J-A-R-E-D....not G-E-R-A-R-D......I don't like that name, but it's okay, you all were just getting to know me...so thank you anyway.)

(7/20/96) My primary nurse Pat wrote a note saying: "How about this "classy little guy" listening to classic station for sleep. (My note: Thank you Pat for loving me so much....I will always love you....you were my very first homecare nurse and you did a GREAT job taking care of me....I took that to HEAVEN and I'm holding you here with me now....Love you so much.)

(8/1/96) Supervisor Holly wrote: "Jared has been home for 1 month! He looks great and is really growing. Mom is very happy with all the nursing care. Thank you all." (My note is the same...Thank you all.)

(8/23/96) (I just came home from my first admission to DuPont) Supervisor wrote: "Informed Mom & Dad that there is no nursing coverage available until Monday morning. Mom was aware of this when Holly spoke to her yesterday prior to discharge. Mom & Dad feel comfortable with caring for Jared and child is at no harm or risk without nursing coverage." (My note: It's okay if you all leave me alone with my mom and dad...THEY know just what to do and when I need it.)

(9/30/96) Supervisor wrote: "Jared is a lot of care-anything the nurses do helps the nurses on all shifts. Please help to make it easier for the day nurse so she can spend more time with Jared and less time on stocking supplies, cleaning and maintenance." (My note: I know some of those night nurses were becoming a little lazy as Mommy told me once...especially one specific nurse as Mommy also said.)

(NO DATE) Primary nurse Pat wrote a note to a new nurse orienting to my case: "Welcome! Jared's mom will be home on Saturday-but we let her sleep in the morning as she does a full shift 3-11 besides her regular job. Mom is very good about any questions and doesn't mind if you ask. She's a great help if you get stuck. Bedroom upstairs-1st door on the left. Bathroom straight ahead. Neither she nor Dad mind helping to get Jared into his swing or stroller. Both parents are very knowlegable and always ready to help. Have a good day and welcome to the group." (My note: My nurse Pat always made everyone who came into our home so welcome like this and it always made me feel so good to know a person like her. Thanks again Pat.)

(NO DATE) A new nurse (Diana) working with me wrote: "Dear Karen and Eric, thank you for the honor of taking care of your little cherub. We had fun today. I read 3 stories to Jared that I brought with me and he watched the book with interest." (My note: Yes....I remember how much FUN I had with you then....Thanks for reading to me Diana.)

(4/16/97) Nurse wrote a note that said: "Grammie brouught over a small piano for Jared. He loves to play with it. He bangs keys with another toy." (My note: I loved the toys that my Grammie always brought over for me when she came to visit...Thank you Grammie..I love you.)

(4/21/97) Nurse wrote a note that said: "Jared likes his new snug seat. He also likes to sit in his stroller by the front door to look outside and the back door also." (My note: Although it was hard for me to do new things...my family and nurses always found something NEW for me to do anyway....thanks everyone.)

(5/2/97) Nurse wrote a note that said: "Jared is nice and healthy with beautiful cheeks and thighs. Keep up the good work everybody!" (My note: What a team you all were with me...No wonder I lived a good life!)

(6/25/97) Nurse wrote a note that said: "Jared tolerates being in his chair for up to 1 hour now. You all should be getting him out of bed and in his chair or swing daily. If you use bean bag chair, use the stroller ventilator so he's able to have change of scenery. He likes to sit at front door and he also loves to watch his Toy Story and other videos in his swing." (My note: Toy Story was definitely one of my favorite videos to watch. Thanks for getting it for me Mom & Dad.)

(6/27/97) Nurse wrote a note that said: "Jared was very happy today, kicking and dancing around in his crib and chair. He is also giving high 5's and blowing kisses, as well as throwing his toys out of the crib. When OT (Occupational Therapy) came @ 2:15, Jared ACTIVELY particpated with the therapist." (My note: Yes, I was becoming (as Mommy called me then) a "little stinker". Mommy said that's when I got an ATTITUDE!)

(9/6/97) Nurse wrote a note that said: "Jared was out of bed in the bean bag chair watching Toy Story and playing with nurse, kicking his feet on floor." (My note: I just realized that I did have a little MUSCLE anyway!)

Well...there's a few more notes that I want to tell you all about...Nurses and Mom & Dad's....so come back soon for more of them. Thank you for visiting me today, everyone.