Updates
Add a new update here.Thanks to everyone who made it to Haylee's Birthday Party and made it such a success. She had so much fun seeing all her family and friends and her Corona Firemen, Thanks to FireDepartments that had the chance to stop by it always makes her smile and her day brighter. We want everyone out there to continue PRAYING for ALL our Firemen out there trying to get all these fire's under-control, May God be with you all and bring you Home Safely. Haylee finally made it to a Alan Jackson concert, her Dad Paul bought tickets for them to go for her birthday and she had a blast at the Mid-State Fair....We love you AJ...thanks for making such great songs for my daughter to sing.. Haylee is loving Junior High, I don't Ms.Cathy is so much..ha/ha..The kids are all off track now until Sept, so we will be having a lot of fun. Seizures are getting under control, during the month of July so far we have only had 4 grand-mals, so this new medicine seems to be working well for us. Thanks to all who are continuing to Pray for her.
Written by MOM on 7/30/08 7:17pm
July 2008, Hi Everyone - Sorry it's been so long since I have updated my password was lost. Haylee is doing GREAT...her and Cathy just started Junior High on July 7th. Haylee had to change medication's her body started rejecting the Dilantin that she's been on for 4 plus years, so we are now trying Lamictal and Depakote. We had a few problems in the beginning but doing a lot better now. We miss all our family in NY and think of you all so very often. We are seeing a Dr. at CHOC now, Dr. B. Swartz and I'm liking her a lot. Haylee's 13th bday is coming up July 20, 2008.....Love you all..
Written by MOM on 7/12/08 10:36pm
Good evening everyone, I first wanted to let you all know that Haylee has finished her 5th grade year with honors, yes; She made Honor Roll - we are so very proud of her. Despite the hard times we have been having lately with her body changing, and things she keeps up the good fight. We have booked a trip back to New York, we leave out on Aug 4, from Ontario to have some testing done. During the last week or so, Haylee took a bad fall and hit her head and it's caused some damage to her (head/scar) area. So we are having to go back and see Dr. D and Dr. H to find out what exactly is going on. We are hoping to fly back to cali on Aug 11, so keep that in your prayers, that are trip will be short and sweet and come home with great news. I am sad to report for those of you praying for our Wonderful Friend/Teacher Donna Logan, she passed away this past sunday - she lost her fight with breast cancer but still claimed Victory because she's walking Streets of Gold now and in no pain. We can't wait to see her again. God always picks the most perfect Angel's and she is one of them - WE LOVE YOU DONNA AND YOU WILL BE GREATLY MISSED!!!!!
Written by mom on 7/13/07 11:54pm
Good Afternoon - I wanted to post some information for those who visit the website and are in need of vital information. Haylee's Doctor's in New York I feel are the best around. Dr. Orrin Devinsky is her Neurolgist at NYU hospital, he's absolutely wonderful. He's team of Experts are truly that EXPERTS in their field not just for being GREAT Doctors but they really care. We still have a ongoing relationship with them all. Dr. Devinsky can be reached at 212-263-8871 that's the NYU Epilepsy Center. Her Neurosurgeon is Dr. Weiner who is the BEST of the BEST - he's the one who perfomed Haylee's brain surgery and helped relieve alot of her seizures. If you have been told that Brain surgery is too risky, you need to speak to Haylee or to the Dr.'s. We were always told that Brain surgery was not an option for Haylee, but nothing else seemed to work. Yes, it's risky but so is having constant seizures. Haylee quality of life improved so much, she's able to run and play like a normal child with some limitations. Brain surgery was our best and only option. We have done all of it, ketogenic diet, 24 different med's, VNS (nightmare). The Doctors at NYU are so full of information, they left no unanswered questions, and made Me as (her mom) feel so safe putting my daughter in their hands. If you have any questions or concerns please feel free to email Haylee or I. Haylee is doing great in school. She does have a 1 on 1 Cathy, that carries her oxygen and meds with her and helps her out in school, and I would recommend that for any parent if you want peace of mind while your child is at school that's the way to do it, get your child a instructional aide that knows how to take care of your child. I became a Instrt. Aide now, that way when my daughter's aide is sick or needs to leave for whatever reason I can go in and take care of her. Before she was having to miss school but now I am able to go in and take care of her. Cathy is the best, she takes care of Haylee like she's her own daughter and her and I have built a very strong relationship now. Dr.'s note is all you need to get. If I can be of any help to parents (utilize my knowledge). I wish I would have had someone when my daughter first starting going thru this is 2002. There's a lot of information - you don't know about.....
Written by Mom on 1/17/07 6:44pm
MERRY CHRISTMAS!!!!!! HAPPY NEW YEAR!!!!!! TO ALL OUR FAMILY AND FRIENDS......we are doing great we have been off track since November 22. We are having a lot of fun playing, hanging out with friends, visiting family members and just relaxing during this time, our trip was put off due to Haylee becoming Ill and we weren't able to make it though but we are hoping to make it back in Jan or April....see you then. Love All
Written by Redonna & Haylee on 12/25/06 11:54pm
Good evening - wanted to let everyone that knew Haylee was in the hospital, know that she's home now and doing okay. The new medicine Zonegran "well" Haylee developed an allergic reaction to it, so I had to take her in on Tuesday and they had to flush her system of the medication. Haylee developed Stephen Johnsons disease back in 2003 while on the medicine Tegratol, and now since that episode I have been told once it's in your body it stays there, so if you become allergic to another epileptic medicine in the same class as tegratol you will have the same if not worse reaction. Well Haylee started getting alot of the systems she had before so I took her in on Dr. Devinsky's order's. After many tests the determined that she is allergic to the medication but it hadn't progressed into the disease. Thank God! So now we are back on Dilantin until Dr. D and our new Epileptogist can figure something else out. GESH!!!! Haylee is fine though. Thanks all of the prayers. Also, to let those that were praying for Austin's surgery today - I just spoke to his mom and he's doing good, I could hear him crying on the phone and that was music to my ears, to know that he's okay. Prayers do work:-) Haylee is with her dad for this 3 day weekend and so very excited to be able to spend that much time with him. Everyone else is doing well. To Jason and Brandi - CONGRATULATIONS!!!!! ON THE NEW BABY BOY "LINCOLN" he is so Beautiful. We can't wait to see him. Good night too all.
Written by MOM on 11/10/06 9:10pm
JUST A NOTE- HAYLEE'S HOPE WILL BE COLLECTING HALLOWEEN COSTUMES (NEW OR GENTLY USED) TO PASS OUT TO CHILDREN IN THE HOSPITAL AS HAYLEE'S DONE TOO MANY TIMES. WE WELCOME ALL SIZES!! PLEASE PASS THAT INFORMATION ON TO YOUR FRIENDS AND FAMILY. YOU CAN SEND THEM TO THE ADDRESS LISTED IN THE CONTACT AREA. IF YOU NEED HELP WITH SHIPPING PLEASE CONTACT ME THRU EMAIL OR LEAVE A MESSAGE. Thanks to all....
Written by Haylee on 11/5/06 10:22pm
November update: Sorry it's been so long that I've been on. Our web name expired and I hadn't had to time get all the info to our web designer. Let's see, We are currently changing medications right now so it's pretty ugly for Haylee and Us. We going from Dilantin to Zongram, and that's been difficult, she's been on Dilantin for a long time and it's been doing a good job for her, but it's also not helping her Braces (yes you heard me) Haylee has braces. So those of you that don't know Dilantin causes your gums to swell and bleed and also, found out it causes early alzeihmers which we don't need to add to the list of things. She's doing great in school, her memory is improving a little, she's trying to memorize poems and such for school so we are having her do that quite a bit, hoping it will help her. We are going off track in 13 day's and I can't wait. Her and I are sick right now with the flu that's sweeping thru Corona right now. We also, purchased a family dog his name is Travler he's a Springer Spaniel and wonderful. I am happy to announce that we have not had the Fire Department here this year I beleive, except for me. So now we visit them instead of them visiting us. YEAH!!!! I hope all of our Family in New York and Texas are doing well and we miss you all so very much - I hope our next visit is just that a VISIT. CONGRATULATIONS TO OUR FDNY CHRIS MANDEVILLE FOR HIS MEDAL OF VALOR - for saving the lives he's saved, we love you and are so very proud of you. I will have your picture up soon on the website. Adrienne and Bret I hope you had a great trip, we miss you.
Written by MOM on 11/5/06 10:21pm
Good Morning - August Update. Haylee is doing really well, the month started off a little rocky but doing so much better now. We went 9 days seizure free, then we went to Vegas and with the excitement and heat she had a petite-mal at New York New York in the Pool. We had a great time though. We have been spending a lot of fun times camping with our family up at Big Bear, doing some fishing and hiking. We have spent a few days at the Beach basking in the sun. Had some fun at a few local amusement parks splashing around and riding some rides. We have 2 weeks left before it's back to go back to school. So now were just kicking back at home and swimming and riding our bikes around. Hope everyone is doing well. Love to all. Mom
Written by MOM on 8/21/06 12:19pm
Good Evening - Well things went down hill from yesterday's update. Haylee had a terrible day today, starting off with a petite mal this morning at 4:am then followed by a mild seizure lasting an hour and 10 minutes at school, then came home and had another one that put her right out for some time. So I had to rely on our friends Jeff and Lucy to pick up my other 3 kids from school, because Haylee's was not waking up at all, but they were nice enough to pick them up and bring them home so Haylee could remain sleeping. Then everything went wrong in the house, my garbage disposal went crazy and we had to have our Wonderful friend Jeff S. come over again and rescue us from the mess and fix the plumbing, followed by a small power outage in the garage that my neighbor had to fix for me, so as far as I can see my Jeff is no longer allowed to leave town. Kids crying, kids seizing house falling apart, mom not sleeping these are all bad things - so dad can't leave us anymore. Thank God that we have such wonderful friends that we can count on in our time of need, no matter the needs. Love to all - Keep her in your prayers thing's are pretty rocky right now. MOM
Written by MOM on 7/13/06 1:17am
Hello All, Haylee had a bad weekend, we were talking about taking her off the dilantin at least until the braces were off and trying something new. We started this on Friday - and by saturday night we realized how well the medicine was working. We had 5 grandmals over the weekend. She's doing well now after a phone call to Dr. D and putting her back up the the recommeded dosage. School started Monday July 10, and she's very excited she has a GREAT teacher once again this year. Mr. Herrera is a wonderful fun loving and kind teacher and we are very excited to have him this year. Last year Haylee did very well with Mrs. Duffin the Teacher of our Year. My other kids are excited this year, Zack has Mr. Prather who is just a great person and teacher all around, and we love him he's ACTUALLY EXCITED about school this year and is not giving me any problems. McKenna is a big time 1st grader and loves her teacher Mrs. Raynes who is so kind and caring, Kalei is a 6th grader now and likes her teacher, we don't know much about Mr. Hay but from what weve seen so far he's just what Kalei needs to have a succesful year. I'm doing GREAT I have started back to work after 8 years of not working (let me rephrase that), after 8 yrs of working my self to the bones but not recieving a paycheck but seeing the wonderful growth of my children. Now, I'm working for Corona/Norco School district as a Special Education Aide. It's very rewarding, this week I'm working at Victres Bower and school for severally handicapped children and I love it, it humbles me and makes me praise God that my kids especially Haylee are all in good health. The people I work with are GREAT, and the kids are so Wonderful even in their condition. But the best part is if Haylee's aide is ill or has to be absent I can be called in to take care of Haylee myself. I love it I'm not sure she does though (ha/ha). We miss all of our New York family and love you all and think of you daily. Too our FDNY we keep you in our prayers and love you all. To our NYPD you are also in our prayers and thanks for your continued emails and support. Most of all to our Corona Firefighters and Family of friends thanks so much for your calls and your unfailing love and prayers to Haylee it means so much to all of us. Haylee's Birthday is coming up on us quickly July 20, she will be turning 11, it's hard to believe that it's been 2 years, time flies when your doing so great. With Best Wishes - Mom
Written by MOM on 7/12/06 1:02am
Hello Everyone, Haylee is doing quite well these last few weeks. Her seizures have reduced in frequency but not in intensity. Cathy and I were noticing a boost in seizures when the State testing came about and they were studying for it, so with a call from her dad stating that if I wrote a note excusing her from the testing do to her condition they would honor it, so I did and she didn't have to take it and the seizures stopped, she was so stressed out. They have only 27 day's left for this school year and she will be in 5th grade. Time has come and gone so quickly. I will add some pictures soon, her hair has gotten so long and beautiful. Christi we would love to meet up with you should you come out to California. Mayra we are so glad to hear from you and that you are doing well. Tell everyone at Tabernacle that we love and miss them all. To all of our Firemen and NYPD we pray for all your safety daily and thank God so much that he brought such wonderful people into our life. Love and Prayers -
Written by MOM on 5/18/06 8:34pm
Hello everyone, sorry it's been awhile. We have had a lot going on. Haylee is doing great, she made honor roll this semester and is doing quite well with her seizures, we had 1 really bad episode that landed us in the E.R but other than that she doing GREAT. She's been horseback riding with her dad and enjoying that, and is getting ready to start playing some sports, we rec'd the thumbs up from both Dr. Devinsky and Dr. Weiner that she can resume all activities as a normal healthy kid, as they put it "Just proceed with caution" but some would say I do that a little to much as it is. We miss everyone and hope all is well, and that our New York family is staying dry and warm. Love to all - Mom
Written by MOM on 3/7/06 6:07pm
Merry Christmas all. I hope everyone has had a wonderful family field holiday. We had a great time in Florida, the kids were in paradise, having Ice-Cream everyday, taking pictures with their favorite characters, riding rides, it was a dream vacation. Make a Wish and Give Kids the World is such a wonderful caring and loving organization, if you want to make donations to this organization please do so they are well deserving. They took such Great care of us, meeting every need before there was a need. The volunteers and staff at Give Kids the World were like family, we met some fantastic people from all walks of life and from all over the world. We had a great Thanksgiving with so much to be thankful for, We praise God and everyone out there who prayed for Haylee and our family, and this vacation was closer for the past. Haylee is doing great the surgery has been very successful. Even though Haylee has some seizures still they are nothing compared to what they were before the surgery. Our saying at school last year was if there was a award for "lot's of days missed" Haylee would win it hands down. But this year Haylee has only missed 4 days of school. And as for our Great Fire Department, well I'm sure they still know our address by heart, but we visit them now instead of them visiting us. All in All we have our God, Family, Great Doctors and a Awesome Community of family to thank. Christmas is over and our hectic lives are getting back to normal, (not that we are normal)but the kids go back to school soon and life is still going on. For those of you still praying for Haylee's well being Thank you so much and God Bless all of you, your prayers are being heard and answered everyday.
Written by MOM on 12/27/05 10:18pm
11-08-05 Hi, Everyone. Haylee is doing very well. We are excited to be leaving to Walt Disney world in a few days. We have our "Make a Wish" Dinner tomorrow night to receive all of our documents for our trip, so that's really exciting. Haylee and McKenna are in cheerleading and that's been a lot of fun, McKenna is more into it for the yelling and fun of it, Haylee is in it for the memory of it, the repition of the cheers strenghten's her memory. And we've noticed a big improvement not just from that but also Haylee had been trying extra hard at school and her reading that's she's improving on her own abilities as well. When we read at night she does so well, and loves to read to her brother and sister. Her Daddy Jeff and I are so very proud of how well she's doing in school and out.
Written by Mom on 11/10/05 1:01am
Hello Everyone, The website was down, but were up and running again. Haylee is doing better, we had a couple bad days, wed and thursday, doing much better now. Christie it's good to hear from you and I hope and pray that you are doing well, loved to get together. Adrienne I'm so glad that everyone's doing great, we pray for your family all the time. Haylee's in dance now and loving it. She's doing so much better in school. As you may no Make a Wish is honoring Haylee's wish for a real family vacation. We will be flying to Walt Disney World in November and spending thanksgiving there. The kids are so very excited to get away and have some fun. Love to everyone. Thanks so much for the continued prayers.
Written by Mom on 10/6/05 7:34pm
Good Morning - It's back to school time for the kids. We had a great month off, Haylee had only 3 bad seizures during our time off. We traveled to Lake Havasu for a family vacation, and had a wonderful time. We watched the monsoon's and the lightning coming down around us, it was pretty cool as Zack kept saying. Haylee is currently home right now, she did have grand-mal this morning at 4:30a.m. were she was shaking so hard she hit her head on the side of her bed. I haven't seen one this bad since we've been home. Haylee is doing well now, she's resting. I will take her to school in a little while. The website maybe down for a short time, we will be updating the pictures, making albums and adding paypal so people can buy the bandanas and t-shirts. Thank you all for your continued prayers and support during this time. To Haylee N. you must also be an Angel sent from God to do great works here on earth. Love to all -
Written by MOM on 8/31/05 11:05am
Good Morning Haylee has been doing very well, with the exception of last week that is. We went by and visited our guys at Station 6, then later that night they came and visited us. We had to take Haylee in to CHOC on Wednesday, she wasn't responding to her medication. Haylee has been sick lately and we found out she had a touch of acute phenumonia, that's what was causing her to seize so badly. We can't really give her antibotics to help with the cold, because they counteract her epilepsy medication, so it's live with the coughing and running nose for a little bit or live with a lot of seizures. We opted the cold till that night, she was coughing so bad I broke down and gave her robitussin and off to the hopsital we go. (sorry haylee). She's doing great now, cold is over and seizing is back under control. To the ladies at headquarters it was nice visiting with you all. To Diedra and her family, we will pray for you,thank you for the kind words they mean more than you can imagine. Best wishes to all and God Bless
Written by MOM on 8/1/05 12:47pm
hi auntie kalyce and jared. I hope you guys are coming saturday. I miss you all alot. hey jj you need to come swiming bud. I have been feeling better lately I was feeling sick and had to take some other medsine so my mom said that because I am taking that stuff it could cause my seizures to get kinda bad and it did but now I am better but its hot. I talked to uncle john and he misss all of us. mom said we are going to see him in august i hope so. I love you all a lot and want to see you.love you haylee lynn
Written by haylee lynn on 7/22/05 1:51pm
hi, thank you for the prayers and birtday wishs. I had alot of fun on wednsday, first my daddy paul came all the way and took me to chuckie cheese and then paid for me some roller blades and all kinds of pads, we had a lot of fun, then my firemen came and had dinner and cake with me, Capt Fred, (george) Gregg, Pete and Mike. Thank you for coming over and for my game, my sister kalei and I played it last night. I have been feeling much better but I had to stay home yestrday because I had a bad night and didnt feel good, my mom took me shopping and then we stoped by to see Captain Jim and the guys, then they had to leave, my mom said they would be safe but I get scared when they go on calls, we pray for them all the time. sometimes I get scared when my brother zack wants to be a firemen, but my mom always tells me that the guys will teach him to be safe and they are all like family, they are all my big brothers. Hi to Christi in Texas and all my Angel friends out there. I have my bears I need to send to you. I miss you Jeff and want to come and see you tell your wife hello from me. Hi Mr.Coker thank you for my shirt I love it very much, I love all my firemen. Hi Lynn my mom is going to bring me there to see you and your new place she said tell marna hi please. I miss everyone my mom said that we are off in august and came go by and see everyone then. I want to come by and see you Linda Lou and Carrie i have not seen you in a long time. Have a nice day. love haylee lynn
Written by Haylee on 7/22/05 1:46pm
Hello Everyone, Haylee is doing great. She spent her 1 week off of school in Jamica with her dad and had a nice time. She's doing very well her first week back to school. Terra it was very nice meeting you also, we enjoyed the visit with you and Jeff just the same. We sure miss our New York family, time has gone by so fast it will be 1 yr ago on Thursday July 14, since Haylee's first surgery, WOW how time flies....She will be celebrating her birthday on July 20, 10 years old, my goodness. All the family is holding up and thank each of you for all your prayers and support over the last year. God Bless you all - MOM
Written by Mom on 7/11/05 11:51pm
Hi everyone this is Haylee - my mom is helping me type. Thank you to NOW my Garland Texas Firemen - yes i love all my firemen. I love my t-shirt i wear it to bed cuz its kinda big right now, you guys are the best!!!! HQ-Marna - I'm sorry we didn't make it we were out of town. My mom said we will come by and see you when is a good time. You ladies have a nice day. To my Texas friends thank you for all your prayers I'm doing better but still fighting some pretty good seizures, but my mom said it will get better and it is she thinks. I love my Angels Friends Teddy Bear and will take it with me where ever i go. To my New York FDNY and NYPD - I miss you all too, and to Chris we are praying for you please be careful. To the guys at Rescue 1 remember to pray for Chris we love him. To My Corona Firemen - I miss you guys so much and please come and see me - I seen our yearbook and some of you are in it with me when i first left for surgery in New York in July. I love you guys you are the best. Hi Jeremy - thanks so much for getting the site up and running your the best man. Love you all very much - Haylee
Written by Haylee on 6/3/05 9:08pm
Good Evening everyone It's May and were hoping we have a better month than we did in April, it was a bad month for us - Haylee had 4 grandmals pretty bad ones at that. This month we haven't started out very good this morning we started the day with a bad grandmal at 5:30 am that was a full body tonic. She's doing better now but keep praying that these a far and few. Thanks to all of you that are still praying for Haylee. Love you all - Redonna
Written by MOM on 5/5/05 12:11am
Good Morning Everyone, I hope that you all are doing well. Haylee is doing much better this week. Last week she stayed in Bakersfield with her dad and had a few bad seizures but doing well this week. I have posted some family pictures of Easter. Haylee will start back to school on Monday so pray all goes well. WE had a great time at the Day of the Child, where Haylee was crowned Princess of the Year. The fire department was there as usual and presented Haylee with a very beautiful and LOUD stereo system. We spent yesterday visiting the stations and taking them some goodies, as well as today. Today Zack is celebrating his 6th birthday so we have a party planned for tomorrow. Haylee and I miss all of our New York family and pray that you are all in good health and staying safe our love and prayers go out to our New York Firefighters and NYPD. Love to all -
Written by MOM on 4/22/05 12:13pm
Good Morning - It's April 11, and we are doing wonderful. Haylee had a great day on Saturday being crowned Princess of the Year. Many Thanks to our family and friends that showed up for the great occasion. We were not sure if we were going to make it, Haylee had a really bad seziure on Friday night, we called 911 for the guys to come out, sorry guys for getting you up and then not having you come - many apologize's she was in a full tonic-clonic for about 22 minutes, after I had given the diastat it didn't seem to be working that's when we called but then about 2 min after she started coming around. We would like to thank our wonderful Firefighters for the Awesome and Very LOUD stereo/surround system they presented Haylee on Saturday she loves it. All my kids are off track right now and are loving the sleeping in and swimming all day long. Please feel free to come by, we always love to see you guys. Many Many thanks again for all that you do. To our New York family we miss and love you dearly.
Written by MOM on 4/11/05 11:48am
Hello to all - As per requested I'm putting a picture of Haylee's new haircut up. And also let everyone know that she is still doing very well, we went 14 days, and the last 2 weeks we have only had 2 bad ones. She's improving everyday at school and doing much work on her own now. Misses her Corona Firemen very much - and New York Firemen. Hope everyone is doing great - love to all -
Written by MOM on 3/7/05 6:04pm
Hi - Just a quick update to let everyone know that we are going on day 9 of know seizures. I talked Haylee into having her hair cut into a really cute bob right below her chin line and its beautiful, we were very proud of her for making the decision to have it done and she loves it as well. Hope everyone is staying dry. Love you all -
Written by MOM on 2/22/05 12:28am
Hello everyone. Sorry it's been awhile Jeremy was fixing the update's for me. Haylee has been doing well. Last weekend we did have to call out the FireDept, she was having some chest pain and vomiting but we are doing wonderful. Haylee has been wanting to sleep in her own room so she's feeling a lot more confident about her seizures, I'm not sleeping much because I'm checking on her all night but she feels better and that's all I care about. WE miss all our New York Family very much and hope you stayed warm during those cold months. Haylee is having only 1 - 2 big seizures a month now BIG IMPROVEMENT!!!!. Thank you all so much for your prayers and support it's working. She's doing Wonderful in school as well, making A's and B's. Recently she was just nominated for Corona's Child of the Year, and will be honored on April 9, by the city of corona, she will be crowned Princess for the Day. Jeff and I have been working on the paper work for Haylee's Hope and hope to have it up and running by summer, any suggestions are greatly welcome. We did finally get by this week and visit some of the stations' and hope to visit the rest this week,I have been sick and now feeling somewhat better. WE love and miss you all very much. Please stop by anytime or write. Love - MOM
Written by MOM on 2/14/05 1:15am
Hello Everyone, It's Jan 9, and I am happy to report that Haylee has been seizure free for 8 day's straight. We have had a few small eye seizures where she can't see but that's it!!!! We are seeing the reward of prayers and faith that the Lord's plan is working for her. Ms.Gregg and Ms.Cathy are seeing a GREAT change in her at school, she is able to stay on task/focused on what she's doing and retaining a lot more this go around. Thanks to all of you who are continuing to pray for her it's working. We love you all very much:-) Please feel free to call anytime or come by and visit.
Written by MOM on 1/9/05 11:45pm
Good Morning everyone, I hope that you all are trying to stay somewhat dry. Haylee and all my kids started back to school yesterday, and is doing quite well, the house was so quite. She had 1 seizure yesterday at school as well as 1 today at school, but otherwise doing great. We were off to a rocky start this morning with a petite mal but nothing dramatic. She misses you all and wishes to see each of you again, and a only visit New York. We are Praying for a Wonderful Hospital free year and only visit's from the Fire Department. Love you all,
Written by MOM on 1/4/05 12:38pm
Hello All - Just a quick update, the Press Enterprise called and will not be doing a follow-up on Haylee, they felt they were giving her too much attention, so you can check up on her, here if you have question's please ask. Haylee is doing well, she had a cluster of seizures yesterday and we ended up at Station 6, getting some medical aide there after playing at Mountain Gate, Haylee started into a seizure and finsihed it at Station 6, with Justin, Matt, Wade and Captain Jim at her side. She is doing fine today and has only had one this morning resulting in some ativan and extra sleep but otherwise fine the rest of the day. She starts school on Monday with Cathy and Ms.Gregg at her side, I'm looking forward to them all being back at school, and back to somewhat of a normal life around here. Thank you all for your wonderful prayers and support. We love and pray for all of you.
Written by MOM on 12/29/04 12:19am
Merry Christmas to all:-) We have had a busy week. Haylee is doing great, she's only had 1 major seizure in 1 week. We took some time Christmas Eve and went around to visit most of the fire stations and deliver goodies to our guys, Haylee was very excited to see them all. We wish all our New York family a Happy Holiday and Wonderful New Year we miss you all. Special thanks to Ms.Jackson you are truly a Gift from God, we were blessed to have met you. Love to all and a Blessed New Year.
Written by MOM on 12/26/04 12:20pm
Good Evening All - Haylee hasn't had a good day today, we are at 5 seizures so far, petite mals and complex partials followed by severe headache and vomiting. Gave her some tylenol and if that doesn't help we are off to have a CT Scan done in the morning if not sooner. She has done well all week, she's been seizure free until today. Hope everyone has a Very Merry Christmas - Happy Holiday's - and New Year - Love MOM
Written by MOM on 12/17/04 11:48pm
Good Morning We had a rough night with Haylee. We had a 911 visit from Station 6 last night. Haylee had a grandmal and we had to give her diastat to get her out, no ambulance needed just needed to check her stats and make sure everything was in tack. She continued to have about 3 more through out the night so little to say we are a bit tired this morning. Merry Christmas
Written by mom on 12/9/04 10:36am
Good Morning Haylee is doing great we have still only had 2 seizures now that we have been home. Things are going smooth, we have adjusted to being back home. It's wonderful because all my kids are off track so Mom gets to make up time. We cut down our tree on Saturday and are getting ready for christmas. Since Haylee and I missed halloween and thanksgiving we are making it up for christmas. We do miss everyone in New York and wish you all a Happy Holiday's and Happy New Year and only hope to see you on a visit to New York. Love you all
Written by MOM on 12/7/04 11:24am
Good Morning Haylee is doing great she has only had one seizure in 3 days. We did receive your card Marta and it is on our Firefighter wall thank you so much for your phone calls Haylee and I can't wait to meet you. We will be making our rounds today to visit as many stations and come by headquarters we just have to see how many she can handle today. I know that she will not want to stop until she has visited everyone that's just Haylee (don't leave anyone out). Her head hasn't been hurting much a few headaches here and there but otherwise doing wonderful. God has blessed us!!! She does have to stay homebound until I remove the sutures but can resume normal activity afterwards. She's not happy about that - but back to her wet-willy tickling self so all must watch out.
Written by MOM on 12/2/04 10:11am
Hello all. I thank the Lord for the safe return of my beautiful wife and our wonderful daughter, Haylee. She seems to be doing a lot better and continues to be the very vibrant and loving little girl that we have all come to know and love. It is now up to God and time to heal her. We thank God and everyone of you every day for supporting and guiding us during this difficult time. This Christmas will be a very special one with our family together and Haylee hopefully healthier. Redonna and Haylee are really special people...I can honestly say that I am proud to be Haylee's "Daddy Jeff" and Redonna's husband. They are both a testament to dedication and unselfishness...I love you both and our family so much!
Written by Haylee's "Daddy Jeff" on 11/30/04 12:26am
hey haylee. we miss you in ny but are so glad you are home. the 2x/week trips into nyc to see you and your mom are now a memory. you are the bravest girl i know. you teach everybody so much, every day. keep the faith
Written by the deutsch's on 11/29/04 1:25pm
Hi Haylee, I am glad you are home. Please say hi to your family for me. Stay in touch and hope to see you soon. Your Friend, Mayor Jeff
Written by Corona Mayor Jeff Miller on 11/29/04 12:12pm
Hello Everyone, We are home!!! It feels so good to be back on California land. We had a bumpy ride back as you can read on the updates. I never thought I would miss that New York Chair that I slept in for a long time but the Denver chairs are even worse. Haylee is doing fine now and looking forward to her visit's from her firemen. We are settled back in here and my kids have not left my side. Zack says if Haylee has another seizure your not going back to NY just call her firemen they can take care of her. Please feel free to come by and visit anytime we would love to see you all.
Written by MOM on 11/29/04 11:00am
Haylee and Redonna were almost home when Haylee had a severe seizure on the flight. Redonna stated a Neurologist was on the plane and administered Valium to Haylee. Apparently this stopped the seizure after about 30 minutes. An ambulance was waiting for her in Denver and she was transported to Childrens Hospital. They will remain there tonight and hopefully return home tomorrow afternoon (Sat). Redonna said they will have a medic escort on their flight from Denver to Ontario.
Written by Haylees firefighters on 11/27/04 12:09am
Haylee is coming home tonight, 11/26
Written by Haylees firefighters on 11/26/04 7:20pm
Hello everyone.. I know that all of you haven't heard much from me during this current trip for Haylee and Redonna (actually, this is my first update). This is due to being swamped on my end with taking care of my other three (3) kids, trying (operative word is "trying") to keep my house up (i.e. laundry, dishes, meals, etc.), attempting to keep my work/career up and also going back to see them in NYC myself on 11-11-04 through 11-15-04. First of all, we as a family all do very much appreciate all of the continued love, support and concern you have all shown for our family, especially for Haylee and Redonna . I do think Haylee and Redonna do gain a significant amount of strength from your/our continued support. As you can all guess, Haylee is getting stir crazy being back in New York for nearly a month now. There is only so many drawings to draw, crafts to craft, movies to watch and games to play...I think Haylee's 2-3 hospital journies back to NYC to deal with these issues are beginning to take its toll. She remains as "up" as she can be but you can see the frustration and boredom in her eyes and hear it in her responses. Redonna also yearns for her home and for seeing the rest of her family (who are all counting down the days until they come home). Haylee's second surgery of the trip occured last Tuesday where they removed a portion of her brain equal to the size of an egg, according to my wife...Dr. Weiner, the brain surgeon actually showed Redonna the section removed once she donned the requisite surgical scrubbs/atire. I am glad I didn't see it or they probably would had to hospitalize me for hitting my head as I fainted...hey, I admit it...I am a wimp when it comes to medical items...I have never had the stomach for it! It is hard enough for me to see Haylee all wrapped in bandages as it is... Haylee had 11 seizures during the day after the surgery however, the hospital put her back on her medicine which limited her seizures at this point to only one at amout 10am EST. yesterday. The 11 seizures apparently came from the same area on the right side of her brain. Therefore, the doctors plan on extracting a bit more area out of the same general region this coming Tuesday AM (11-23-04), removing the mapping grids and then closing her up for this trip. Believe it or not, they believe she and Redonna can leave next Friday (11-26-04). Therefore, at Redonna's direction, I made them flight reservations for coming home on Friday. Thank the Lord indeed since we all miss them terribly...thanks giving will be one day off but we will be thankful all the same. As I write this email, she is receiving another MRI. This follows a mapping test performed yesterday...all items appear to be in preparation for her final surgery on Tuesday. At this point, the next surgery will most likely be her last for a while if not forever. Haylee needs some time to heal and spend some time with her family, as does Redonna - we need to let time, prayers and God take care of her now We also need to get Haylee back into as much as a normal routine of life as necessary...we do hope and pray this final surgery and recovery time will result in eliminated or at the very least, severly reduced numbers of seizures for her. Once again, thank you to all...I will give you another update as info. is available and when I can. Thanks for understanding. -Jeff Massey aka Haylee's "Daddy Jeff"
Written by Daddy Jeff on 11/21/04 1:19am
Hello Everyone, just a quick update. Haylee's surgery has been postponed to Nov 10, we are still in New York and will be till this is over. She is doing fine, has had many seizures during this time but otherwise well. Thanks for all your prayers and support. Will update after surgery is successfully over. Hospital is NYU 560 First Ave.New York NY 10016 patient haylee press 9th floor ICU if you would like to write her. Love MOM
Written by MOM on 11/9/04 12:55am
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