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Copyright 2004 All Rights Reserved Jenny and Andrew Scott (c)
Other Jenny Posts 1, 2, 3, 4, 5, 6, 7
Check out the new and improved Heroes for Children Website!
September 10th--
8:15pm--Ah, snuggles. Maggie is crashed on my chest right now snuggling with me. I love this closeness with my babies. Maggie is not a snuggler. Unless she is passed out, she doesn't want to sit still long enough to cuddle up in my arms. She would rather use me as a climbing post, pull my hair, and attempt to take off my glasses (she's already broken a pair). Allie was my snuggler. Oh, she and I would curl up together on the bed or couch and lay like that for hours. We always called her "Snuggle Bug." Now, would she have been that way if she hadn't had cancer? I don't know. I think so because she was really snuggly even before cancer. Maggie has never been that way, even as a newborn. Maggie has always wanted to go!
I've struggled with finding the time and energy to come to this journal, sit and write. I have come to think that it is because this journal was created because of Allie's illness. It reminds me of hard times and of sickness. When I begin to write, my brain can't help to think, "I hope I never write health updates about Maggie." That is a real and valid fear for me. I can't help but to remember the pain and suffering Allie experienced too. This journal has brought me many comforts but as of that it has been something I have wanted to avoid.
The two year anniversary of our sweet baby girl's death is this Wednesday. We aren't doing anything big like the party we threw last year. Just low key dinner with family. This weekend, Frances gave me an ornament of an angel. The angel is holding a ribbon that says something to the effect of, "Those we hold in our arms for a short time, we hold in our hearts forever." When she handed me the gift, we hugged and cried. How true of a statement that is. We had her for such a short time. We will miss her and love her forever.
I feel anxiety leading up to September 13th. For me, that is a difficult date. It was harder than birthdays for me, though birthdays are very difficult too. I think it is because it was the end of my hope. It was the day my heart broke and my dreams for my child ended. I have found myself tearing up just about every day for the past week or so. Maggie is my best consolation. She is my greatest comfort. The day my heart began to heal (though it will always be slightly broken) was the day Maggie was born. She has shown me love each day. There are so many times that I see Allie in her eyes. I see that very same sparkle.
Nine months is not long enough to get to know someone. Nine months is not long enough to love them and snuggle with them. I wanted to curl up on a bed or couch and snuggle Allie for many more years, not just nine months. On the day that Maggie turned nine months, I was a mess. All I wanted to do was hold my baby (which she didn't agree with!). I don't think I breathed easy until she turned ten months! I was in a countdown, so excited for her to pass that milestone. I felt so relieved not to have to explain to people "I lost my first when she was nine months and now my second is nine months." That topic came up more than once given my job. I have to talk about Allie on a daily basis.
Now that Maggie is old enough, she watches videos of Allie. I will turn them on my computer and let her watch. She giggles and laughs at Allie, especially at one where Allie plays with Elmo (I think she was about three months--it's my favorite video, so I choose that one most of the time). I haven't let her watch the memorial DVD yet, but I think I will soon. Whenever we walk down the hallway together, I always stop at the large picture of me, Andrew, and Allie. Maggie will reach out and touch the picture or giggle at her sister.
My necklace has two charms--one of each girls' beautiful face. Regan, Maggie's babysitter's daughter who is two, likes to look at them. She can easily tell them apart. The first time she examined them, she said, "Oh, that's Baby." (AKA Maggie). She touched the other and said, "Who that, not Baby!" Now, she will say, "Oh, that's Baby and that's Allie!"
Recently, Heroes for Children helped a family in the Houston area that really touched us. About three weeks after our assistance, the family sent us a sweet note sending their thanks. In the letter, the mother explained that her son was battling liver cancer. Six years ago, they lost their oldest son to liver cancer and she feared the same would happen again. Larissa and I sat in our office dumbfounded. It was my worst nightmare staring me in the face and saying, "look, it can happen." At camp, I heard a similar story. The last night, we have a big campfire. The kids are given pieces of paper and invited to write their wishes there. Then, cabin by cabin, they come to the front and throw their papers into the fire. If they want, they are given the opportunity to speak at the microphone. Some do, some don't. It usually is a very emotional time for the campers and staff. The younger kids say things like "I wish Camp Discovery was all summer long!" Others cry and tell of their cancer experience. A boy about 10 was sobbing when his group was up there. He came to the microphone and said that he was tired of cancer. His older brother died of cancer before he was born and now he had it. In my brain, I was yelling NOOOO!!!!! I broke down at that moment. My Arts and Crafts partner Kelli was beside me and she knew that was what was running through my mind. It was the realization that it has happened to other families. Just because they lost one to cancer, they were not granted immunity.
Given my job, I don't get much escape from the cancer world. Each week, I read stories of kids that need our help. I'm working hard at raising money for these children, but there never seems to be enough. I think on a weekly basis, I get an email asking if we will help someone outside of the state of Texas. While I wish we could, we just do not have the funds. We have to start small in order to grow. Right now, we aren't even serving the entire state of Texas at the level we should. We are doing well though. To date, we have given $155,000 to families this year! We are expanding our fundraising efforts down to Houston to raise money for families in that area. I now take monthly trips down to Houston, but they are worth it. I'm so very proud of the work of Heroes for Children. We are becoming more and more professional. We have a CPA that keeps our books in check and we have just completed our first step towards a full audit. That will be completed next year. I am learning something new each day about the nonprofit world and trying to keep up as much as possible! There is so much to learn! Who would have ever thought my beautiful girl would lead me to do this?
In Maggie news--she has been taking steps for over a week now! She can take four steps in a row, usually quickly and towards someone. In the last few days, she has started to take a few steps without a specific destination of our arms. This is an exciting time for us. We are amazed daily at what she is learning to do! I won't lie, every time she hits a new milestone, I cry for Allie. More than anything, I feel sorry for her Allie never to have experienced these exciting moments in life.
Maggie was filmed for a children's video with Luke! Karen, a friend of Dana's and member of the Advisory Board for Heroes for Children, owns athleticBaby (www.athleticbaby.com), which produces children's DVD's focused around sports and healthy, active living. Karen called me last week saying she was in need of babies. Well, we had two beautiful babies for her! Maggie and Luke were in the soccer video now in production. They palayed with large and small soccer balls. Maggie showed off her crawling skills, and both babies smiled and clapped for the camera. They did so great! I know they will be so cute in the video! I can't wait to see it. Of course, poor Maggie has been paying for two hours of outside playtime at the park all weekend. Ever since, her poor nose has been on a constant faucet--darn allergies!
It's about time for bath now. Maggie is awake and not tolerating that I am not giving her my utmost attention.
Not looking forward to this week, Jenny
Some new Maggie pictures! Enjoy!
See why I'm not posting--no time! This kid is wild!
Tuesday, August 15th--
11:30pm--While I know that it has been almost a month that I have written in this journal, I am simply posting tonight to let you know all is well. I am trying my best to take breaks more frequently from the computer and my job. This week, I went full time for Heroes for Children. This is both an exciting and anxious time for us. I want to focus my time at home to spend it all on my family. My goal is to leave this wonderful laptop in the docking station in the office at least three times a week. Hopefully, I will post a full journal soon. I honestly just haven't been in the mood and don't want to do it as a chore. I love this journal and don't want to feel it is a "duty" or chore to complete.
Thank you all for checking on us. Everyone is great! Maggie is growing and developing each day. She continually amazes us. Camp was incredibly awesome, and Andrew has completely recovered from his surgery without any complications. If you didn't already see the news click, you can watch it by clicking here. The box on the right corner has it in video format. I definitely recommend watching the video if you can instead of just reading the transcript. No news yet on the recipient.
OH--before I end and go to bed, let me just clarify something from my last post--NO, NO, NO--I'm NOT pregnant!! I wrote "future sibling." I meant that in the future sometime, Andrew and I hope to have at least one more (probably that will be it). More than likely, it will not be for several more years!!
One last thing---HAPPY BIRTHDAY DANA!!! I love you--what an incredible friend you are. I'm so blessed to have you in my life!
More to come at another time, Jenny
Thursday, July 13th--
11:30pm--On Tuesday morning, I listened as my husband explained to a video camera that doing this bone marrow surgery was special to him because "it is something I couldn't do for my own daughter." No, I didn't cry, but I welled up with more pride than you can imagine. My husband the hero! Andrew's surgery was Tuesday afternoon. He did great!!The doctor said his marrow was a bit stingy at first, but they were extremely pleased with the end result. They expected to take close to a liter of blood from his bone marrow. The great thing they didn't expect was that they received about twice the concentration of rich stem cells then they were hoping for. The oncologist told him he was a "super donor!" Frances, who was there to support us all the way through, asked the doctor if he was the recipient's oncologist, what would he think. He immediately responded that he would be thrilled to transplant such great cells into his patient. From what I understand, having a higher amount of rich stem cells gives the patient a better fighting chance.
We knew the child's transplant (which is actually a quite simple process--just goes in like a blood transfusion, no surgery or anything) would be soon. We figured it would be yesterday or today. Nope, it was Tuesday night! We ask of course that you please send the family, wherever they are, some positive thoughts. While the transplant itself is a bit anti-climatic, the weeks and months afterwards can be very intense. Back when Allie was about to begin her preparation from transplant, I wrote a long post explaining. If you want to see what I wrote about transplant, visit http://www.scotthousehold.com/week_10.htm, and read the July 7th entry. Allie's transplant was a cord blood transplant, but the information is the same. Cord blood gives the recipient and the doctors a different way to collect stem cells, what is taken during a bone marrow harvest. Many doctors are moving more to this while others prefer to find bone marrow donors.
The representative from Carter Blood Care took the donation immediately back to her office to meet a courier. Of course, nosy Dana (who came to visit in the waiting room) asked her, "and where is he going?" Her quick answer--"on a plane." "And where is that plane going???" "Oh, I don't know." That's all the information we got. The woman laughed and said that she had all the information in a file. She had been sitting in the waiting room and had gotten up to use her cell several times and left her stuff. She told Dana, "and they didn't even look!" "They" was me and Frances. Dana said to her, "well, I would have looked!! If you leave again, you better take that file with you because trust me, I'll look!!"
Several of the 12 South nursing staff came to visit while Andrew was in surgery. Cindy, one of our nurses who had actually Allie, Sam, and Taylor's transplant got to be the assisting nurse during Andrew's bone marrow harvest. Dr. Goldman assisted with Dr. Berryman. A cameraman and Janet St. James from Channel 8 news also went in to the surgery. Andrew allowed them to film the whole thing! Cindy joked afterwards about Andrew's cute butt! I can't tell you how special it was for Andrew and me to have everyone involved in this with us. Janet did all the news stories on Allie. She gave each piece special love and attention. I just received word from her today that the piece is set to run on Tuesday, July 18th on the 10pm news. The reason there is a week delay is because it provides time for Janet to make it a longer piece. She told me today that she is hoping Allie will guide her in writing the piece. I believe she will!
Andrew did wonderfully. He was sore all day yesterday (I was gone all day on a business trip to Houston) and missed work. He returned to work today and barely needed even an Advil! When you praise Andrew about what an amazing thing he has done for this child, he blows off the compliments. He says anyone would do what he did. I wish he was right, but I don't know.
Many of you have asked in the guestbook for some information about becoming a donor. If you are not registered to be a bone marrow donor and you would like to consider the possibility, please visit some of the sites below:
http://www.nmdpdallas.org/links/links.asp# National Bone Marrow Donor Program of Dallas, an affiliate of Carter Blood Care. For the DFW/Waco area only
www.marrow.org National Bone Marrow Donor Program
Talking with the transplant coordinator, I gained a little more information about signing up. Usually, there is a charge to get on the registry. I believe the charge is less than $100. This is to help with processing and testing, I think. Regina, the transplant coordinator of Carter, told me that right now registering is free for all minorities, but a charge does exist for caucasians. You have a better chance of finding a match within your own race. There is such a need for minorities to register to be donors that they are waiving the fees. People are dying because they cannot find a match. The rapper Nelly searched for a match for his sister without success before she lost her life to leukemia. He set up bone marrow drives all over to get people to sign up. There are times where whoever is hosting the drive while cover the expenses of registering to be a donor. That was actually the case on the day Andrew and I registered. We had gone to a blood drive at Medical City and they were offering the choice to register for free that day with a simple finger stick. Regina says they now can do mouth swabs!
As always, I hope you will consider donating your blood as well. Blood donations and blood shortages are critically low at this time. After a transplant, patients often become dependent on blood products. Platelets are the last to recover post transplant. For Allie, she had a platelet transfusion every other day post transplant! Without them, she would have bled to death internally. Not a good way to die. Platelets can be donated as often as every two weeks. It is a longer process than donating red blood cells, usually close to two hours. The donor center usually lets you pick out a movie and headphones during your donation. The shelf life of platelets is only three to five days. They are so vital! I unfortuntately cannot donate due to extremely weak veins and a slight touch of anemia, but I can at least advocate for it. Our friend, Kris, has become a regular donor because of Allie, usually going every two weeks. I am so honored that he has continued to do that. My mom and mother in law both are donors as well. Please contact your local blood donation center to find out more information. It is such a simple thing you can do to save someone's life. You may never know the difference you made, but the patient and his/her family most certainly know.
I keep thinking this journal tonight is getting too long, but I have more to write. There is a lot on my mind and I am wound up!
I leave for Camp Discovery early Saturday morning. Many people wonder why I am leaving my child to go to camp. If they experienced camp like I have, they wouldn't question it. Plus, it reminds me of teaching. For those that knew me back then, they understand how much I love to be in a classroom setting. I loved teaching. I wasn't the best teacher when it came to organization, grading papers, preparing lessons, and taking care of administrative tasks. I know my faults! But, I was great with the kids and loved being in that environment. Since I have no plans to return to the classroom, Camp Discovery provides me with the opportunity to be with kids. And what amazing kids they are!
My mom is taking care of Maggie here at my house the second half of the week. Frances was set to take care of her the first half. Sadly, Frances' father is close to passing and she left this morning for Louisiana. Please keep my sweet mother in law in your prayers this week. There will not be a memorial or funeral as they are donating his body to science (he was 91), but she is dealing with caring for her mother and his estate. I think there will be a party too. Last we heard today, he is still alive, but struggling. I hope for him and the family it is sooner than later. Speaking from experience, no one wants to see a loved one suffer. To read about my camp experience from last year, see my journal of July 26, 2005 http://www.scotthousehold.com/p4.htm.
I was really stressed when I found out about Frances leaving. Of course, I wouldn't want her anywhere but with her family. I am a person who takes obligation and commitment seriously. Having committed months ago to Camp Discovery, I felt that I was unable to call today and cancel. They only have two volunteers for Arts and Crafts, one being me. I considered canceling, but really didn't want to do that. Then, I felt guilty for leaving Maggie. I made alternate arrangements today--which have actually changed again tonight!--that I knew would work. But I could shake the guilt. All along, I was ok with leaving because I knew she would be with her grandmas. My mom takes Maggie almost every Sat. night for a sleepover at her house. Yes, I realize just how lucky I am that have that! Frances has not babysat her yet. I was excited for Maggie and Frances to have that time together. Hopefully, they will get it sometime later when she can go for a long weekend or something. Debbie, my best friend, and her awesome boyfriend Brandon love Maggie. They have offered to come stay at our house until my mom can come (she is out of town) on Tuesday evening. That way, they dog is covered, as well as the dog we care for in the summers. Did I mention we keep a family friend's dog every summer for 5-6 weeks and she is supposed to come tomorrow? So, needless to say, I was stressed today. I did have it where my brother was going to stay with the dogs here at my house while Maggie stays with her babysitter, Angela. I felt bad for asking that of Angela, though she swore she didn't mind. She always tells me that she thinks of Maggie like a third daughter to her. Having Deb stay here with Maggie is better because it doesn't take her out of her home. I feel better knowing she will be in her own crib. And she adores Deb and Brandon. Still haven't told Jeremy (my brother) and Angela the change of plans, but I'll handle that tomorrow.
I am really forward to camp again this year. It is such an amazing experience. It's funny--when they asked me last year to consider Arts and Crafts instead of a counselor position due to my pregnancy, I was sad about it. I thought I was missing out not being a counselor in a specific cabin and felt almost disappointed with my position. This year, they asked me, "so are you wanting to be a counselor?" Without any hesitation, I replied, "Heck no!! I want to do Arts and Crafts!" I love it!
I know I will miss Maggie, but I know this is right to do. I hope to continue to go each year. When she (and her future sibling) is old enough, we will send her to her own camp. Maggie will NEVER go to Camp Discovery--you can only go as a camper if you have or had cancer. NOT MAGGIE!!! No, she can go to Sky Ranch or Pine Cove instead! I am printing pictures to take with me of Maggie and I know I will call and check on her at least twice a day. While I am gone, Andrew is off on a guy's trip with his friend John. John and Andrew have been best friends since the ninth grade. He is in the army, so we see him when we can. The two of them are flying to California and traveling up through the Redwoods to Oregon.
We're all scattered and crazy in the next week. I know I can count on our support, even our internet support, to keep us in their thoughts and send us love! I hope all of us will be healthy and safe during this time.
There is so much more on my mind but it is way past my bedtime! It is now almost 12:30am and I have no idea if Maggie will sleep through the night. Next time, I need to write about my sleep issues with my sweet child. That damn allergy cough is the culprit! Napping during the day isn't consistent and doesn't always happen. I joke that sleep is a form of defeat for my child. My mom calls her "baby on the go." She is perpetual motion and heaven forbid she miss anything. Most nights, she sleeps all the way through, but not always. We never know when I am up at four in the morning.
I hope to post fairly soon once I return from camp, but don't hold me to that.
--Jenny
Sunday, July 9th--
No time for a full post, but I thought I would put in a few pictures. Andrew's surgery is this week. PLEASE--keep Andrew, the family, and especially the child recipient in your thoughts and prayers this week. I will update later to let you know how he is doing.
Thanks!
And now for the beautiful faces of Maggie!
Tuesday, June 20th-- 5:00pm--When Allie was sick, I was amazed at how people who never met her were drawn to her. I marveled at how people checked this site for her health updates and continue to do so. Extremely touched, but still puzzled at times. I remember Dana and I having this conversation more than once. About a year ago, the two of us found the site of Amazing Jacob Duckworth. It all made a sense then. I check on other kiddos, but I become hooked on sweet Jacob. Something about his blond hair and wise, beautiful, blue eyes that reminded me of Allie. According to the doctors and all known medicine, Jacob should have passed many times. Dana always said he was like a little cat--nine lives and then some! Each time he landed PICU in critical condition, Jacob displayed more strength than most grown men. With amazing dignity and strength, his family remained at his side. His three brothers (Jacob is a triplet and they have an older brother too--a very busy household!) brought sunshine into the hospital world. Every person that visited Jacob's website and saw the pictures of smiling blond boys saw an insurmountable amount of love shining through the web.
Sadly, Jacob passed away last week. For a week now, I have come to this website to write my feelings. For a week, I have fallen short and not completed the task. I have thought about Heather, Jacob's mom, every day. Friday night, I dreamed of flying to Florida to meet Jacob. I realize now it was because Jacob's service was on Saturday. There is an image I cannot get out of my head--a picture of Jacob and his three brothers all intertwined, legs, arms all mixed together. Nothing but smiles on their beautiful faces. I have never seen a happier group of children.
What draws me to that site besides Jacob is his mother. Her faith--as amazing as she describes Jacob and his strength, her faith is just as amazing. In tragedy, some turn to God for strength. Many, like me, turn away. I lost my faith after Allie died. Maybe it wasn't strong to begin with. I don't know and I don't know how or if I will get it back (as I have asked before on this site, please reserve your comments and judgements--this is an internal struggle and journey for me). But Heather--she knows what she believes, and she finds comfort and strength in that. I admire her. I admire her greatly. Heather has the ability to take this terrible tragedy and turn it into one of her greatest strengths. Her faith in God and love for her family inspires so many. Whatever she chooses to do with this new point in her life, I know it will be done well. She will honor Jacob's memory in all that she does.
The cancer community was all deeply affected by Jacob's death. I know that I will always remember him, even though I never met him. While we in the cancer community were saddened by Jacob's life, we were also thrilled to hear of the birth of beautiful baby Jacob (what a coincidence!), Hayley's new baby brother. Hayley passed several months after sweet Allie of the same awful cancer. I am so happy for her parents and the sweet baby brother. I know what they are experiencing--feeling an incredible amount of love for a new child while feeling an incredible loss for the other at the very same time. Congratulations, Dayna and Alan! I wish you many moments of love and happiness for MANY MANY years to come!
In our world.....
Maggie is wonderful! HEALTHY and happy--what more could I ask for? She's sweet and fun and so loving. Andrew and I spend our nights in our playroom, going on walks with the dogs, and loving on Maggie. Three weeks ago, life changed in our household when Maggie got on the move! She can crawl! Woohoo! Last week, she learned to pull up. Debbie jokes that I need to knock her back down! Of course, I won't do that because I am too excited about this stage. Oh, how fun this is. The other day, she crossed the room to me, grabbed my shoulders and pulled up on me, only to land in my arms with a squeal and a smile. I couldn't help it--the overwhelming joy I felt in my heart brought a few tears. It was such a special moment for the two of us. It made me think of all the moments I want to have with this beautiful child in the future. Hugs? Bring them on! I'll take the hugs, kisses, and even tantrums in the future so long as it is spent with her.
Maggie brings such joy to my life--can you tell?
Eating is not her strong point. We've been working on it, but she doesn't care for baby food at all. We decided to follow our pediatrician's advice and wait for solids until then. For the first three weeks or so, she ate ok. Maybe once a day about a jar at a time. She never opened wide for food, but she at least accepted it. Now, she spits it out. Blows raspberries at you with a mouthful of green beans! If you trick her to smile, she will eat a little (at most half a jar) but not much. If she begins to cry, I stop. I don't want to make it a negative experience. She does like veggie and fruit puffs--well, the few that actually make it into her mouth and not the dog's! This week, I started to try different foods that she could eat. We did diced pears (a no go) and real green beans (she ate a few but put the majority in her hair!). I've been searching to figure out what to do for her--try real foods, stop all together and try again in a few weeks, etc? Tonight, we were having rotisserie chicken and stove top dressing. She loved it! She actually ate and opened up for bites! So, not a baby food baby, more of a chicken and Stove Top girl!
Today we got even more great news about Andrew's bone marrow donation. When he went to a preliminary meeting last week, he asked if it was possible to have the procedure at Medical City with one of Allie's doctors. We found out today that he can! The surgery is set for July and assisting in the procedure will be none other than Allie's beloved Dr. Goldman!! Oh, this just makes it feel so right. We don't know much information about the recipient--simply that he is male, nine years old with neuroblastoma, and in the US. If he chooses, Andrew can send a card wishing the family well so long as it doesn't contain any of our information. They also said we can send a gift if we like, so we are discussing it. I can't tell you how proud of Andrew I am. I've said many times that he is my rock. He truly is my strength and what grounds me. I look to him for every decision I make in my life because I respect him so unconditionally. For him to give so selflessly like this to a stranger makes him a hero in my eyes. He doesn't like me to say that to him, just shrugs it off and says "haven't done anything yet, just have good blood." Did I mention that he is a PERFECT match for this child?? 6 out of 6! What Andrew doesn't see is that many people, maybe I am generalizing but I think many men, would not do what he is doing. To go through pain for a complete stranger, that is a sacrifice. Would he have done it more than two years ago when we didn't know what bone marrow even is? I don't know. I do think he would help anyone in need if he felt it was right. I know he believes this is right. Like I said before, Allie continues to send us signs that it is. Getting approval for Medical City and Dr. Goldman is even one more affirmation that this is the right thing for him.
This morning, Maggie and I delivered a laptop to a social worker to Medical City through our Laptops for Love program with Heroes for Children. While there, I couldn't resist the pull of 12 South. Only two nurses were there that knew us, but it was great to see them. It felt good to know that the only reason we were sitting in that visiting room was because we were just visitors. That's because our daughter does not and will NOT EVER HAVE CANCER! Do you think if I say it enough I will be convinced and relax?
The rest of our summer is going to be spent with our girl, with the exception of one week. I am returning for my second year at Camp Discovery in July as a volunteer. As difficult as it will be to pull myself away from that sweetness of a child I have, I am excited about going back to camp. I had such an experience last summer that I couldn't turn down the opportunity to return. Maggie will be spoiled rotten while I am gone too! Andrew and his friend John are taking a "guy's trip" to California to go up through the Redwoods and hiking in Yosemite. Both the grandmas are making camp at our house, dividing the week between them to shower little miss with lots of love and so much attention! It'll take me a while to unspoil her! Well, wait a minute--she is spoiled already!
It's time for me to head to bed. New pictures of Maggie below! --Jenny
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