The more, the merrier!
Melody is now 15 years old. She is still being followed at the IWK Children's Hospital in Nova Scotia. Melody has been very strong through all this and we are very proud of her. Below is the original write up for Melody's story and the concept for this blog.
Melody is just 6 years old and has recently been diagnosed with Juvenile Dermatomyositis; a rare disease that only 1 to 3 children per million a year are diagnosed with. She is currently undergoing a great deal of testing at a children's hospital to determine the extent of the disease and how it will be treated. This disease comes with plenty of pain and limits Melody's ability to do a lot of the things children her age enjoy.
Seeing that this disease cannot be cured, only treated, Melody has a long road ahead of her. Her family would give anything to make this road a little brighter for their special girl. This is where you come in! We all know how exciting it is to get a handwritten letter or card in the mailbox, so we thought it would be fun for Melody to look forward to getting some mail of her own. She has a map of the world on her wall and puts a little sticker on every place she receives a letter from.
If you'd like to send along some sunshine, please send it to the following address:
Mail for Melody
57 Chaleur Drive
Belledune, NB
E8G 1Z3
Canada
Thank you so much for taking the time to participate. Your thoughtfulness is deeply appreciated! We will continue to update this blog with Melody's progress, so feel free to come back anytime.
Melody is just 6 years old and has recently been diagnosed with Juvenile Dermatomyositis; a rare disease that only 1 to 3 children per million a year are diagnosed with. She is currently undergoing a great deal of testing at a children's hospital to determine the extent of the disease and how it will be treated. This disease comes with plenty of pain and limits Melody's ability to do a lot of the things children her age enjoy.
Seeing that this disease cannot be cured, only treated, Melody has a long road ahead of her. Her family would give anything to make this road a little brighter for their special girl. This is where you come in! We all know how exciting it is to get a handwritten letter or card in the mailbox, so we thought it would be fun for Melody to look forward to getting some mail of her own. She has a map of the world on her wall and puts a little sticker on every place she receives a letter from.
If you'd like to send along some sunshine, please send it to the following address:
Mail for Melody
57 Chaleur Drive
Belledune, NB
E8G 1Z3
Canada
Thank you so much for taking the time to participate. Your thoughtfulness is deeply appreciated! We will continue to update this blog with Melody's progress, so feel free to come back anytime.
4/25/18
We are back!
Hello Everyone,
After taking a very long break from this blog I have decided it's time to come back. I have a few reasons for returning. The first is because Melody has been doing so amazing and not letting her JDM slow her down. I have lots of positive things to share with you all about her. I hope it helps others who are also on their own journey with JDM. The second reason is because I feel like this blog is unfinished, like I dropped it when things got tough and I need to make it right and continue what was started.
Melody is in grade 10 now and doing very well in school. She is on the honor roll with her marks. She is in lots of after school activities such as Drama, Vocal Ensemble, Song writer circle, and her high school rock band. She is learning to sing and play guitar. However her true passion is drawing and sketching. She was bullied and targeted while in middle school so to see her doing so well now is heart warming.
As for her health... Melody does have days that she has a lot of pain and her rheumatoid arthritis acts up. She deals with it as best as she can and takes meds when needed. Her main pain is usually in her back and legs. Other health issues that have come up and still ongoing since my last blog post way too long ago is that she feels light headed, dizzy spells, and has had a few panic attacks. These issues are all being looked into but as well as she tries to handle it all, she is still a teenager and it's a lot to deal with at times. But we are so proud of how well she deals with everything and that she never lets it slow her down from doing what she loves.
We still make the long trips to the IWK. That hospital is truly amazing. Without that hospital and everything they have done and continue to do for our Melody... I don't even want to think about what could have happened. That place and all the staff will always have a special place in our hearts forever.
I guess I will end this blog post here and save some things for other posts to come. I'm happy to be back. Now that Melody is old enough, she may even do a few posts of her own. Let's hope so! I'll pass the idea on to her and see what she thinks. For the meantime, I will keep you all updated. Hope everyone is having a great week!
7/8/11
IWK Trip
So once again we were at the IWK a short while ago and Melody brought more teddy bears for the children who are patients there. This time we had a little over 50 bears. It makes her so happy to bring teddy bears to the children there. Not sure what the total is at now but I will add it up and let you know later on.
New Shoes...
Well Melody has finally got her new fitted shoes to help her with the pain she gets when walking or any other physical actuvity using her legs. She said they are very comfortable. They must be working because she isn't complaining as much about having pain in her legs. Yay!
Summer is here!
Well Melody has finished another school year and is anxious for grade 4. She did very well on her report card and we are so proud of her. It was a tough year for her with starting a new school and having to deal with some bullying. It was hard to have her go through that but she stuck it out and I went to the school a couple of times so things finally got settled. She finished grade 3 in a good way (with no more bullies)so we are happy. She missed a lot of days but still came home with a report card to be very proud of! Way to go Melody!
4/6/11
BHS Visit
Melody was invited by Kalyn Godin and her teacher Ms. Fortune to speak to the Entrepreneurship 110 class at BHS (Bathurst High School). Melody was so excited and enjoyed talking to the students. They really made her feel welcome and had some really great questions for her. They also presented her with a BHS t-shirt. She was proud to wear it to school the next day and tell her class all about her big day. Thank you so much to Kalyn, Ms. Fortune and the entire class for making the visit so special for Melody.
2/8/11
A New Look!
Melody decided it was time for a fancy new hair style. We went to Classic Cuts and her hairdresser was awesome with her. She braided Melody's hair first and then cut it off so we could save it. Melody thought that was pretty cool. So much hair! She is now sporting a cute haircut with a couple of pink and purple streaks. She is so happy! (pics to be posted soon)
IWK Trip once again
Well we made yet another trip to the IWK. Melody was a little sad that she didn't get to see Buddy this trip. He was in clown school for the day but said he would see her next time. She still did very good with her visit and he would have been very proud of her. The appointments went well but it was a long day in the hospital. Melody was pretty tired when it was all over. She does need "special" shoes to help her ankles out. We will try to get those as soon as we can for her. Not sure when the next trip is yet but with all the snow storms lately we're not in any rush to be traveling.
Christmas 2010
Christmas time at our house was wonderful. The kids had so much fun opening up all their gifts on Christmas morning. Melody had a fantastic Christmas. Santa brought her some wonderful things but I think she was most excited about her guitar! She is really picking it up and already knows 3 chords. She loves playing so much. Christmas 2010 was definitely a happy one!
11/11/10
The Wiggles Show!
Melody had such an amazing time at The Wiggles show with her family. She and her brother Spencer danced and wiggled through out the whole show. Even when Melody would sit for a little rest her hands and feet were still going. Their smiles stayed for the whole show. The Wiggles are amazing. They are very talented and have so much energy. They really did put on a wonderful show for everyone. Melody played along with Murray on her plush red guitar and Spencer had his Captain Feathersword hat and sword all ready for action. They also had their Henry the Octopus Teddies in hand. Melody said her favorite part was when the lights went off and everyone used their phones, glow sticks and cameras to make stars. She thought that was pretty cool. Melody's family would like to say thank you to The Wiggles. We will never forget what you did for her and Spencer. They had a blast and many wonderful memories were created that evening. A big thank you to The Wiggles special friend Alicia as well. You are an amazing person!
Melody an her family would also like to thank Hampton Inn (Saint John) for giving us a room for the night of The Wiggles. The kids enjoyed the pool and their queen size beds. The morning waffles were so yummy! Your staff was very nice to us. Thank you again for everything.
11/1/10
A Wiggles Surprise!
We got a wonderful surprise the other day when we opened Melody's blog e-mail. There was a letter from The Wiggles asking Melody if she and her family would like to go see them at their show. She was so happy and anxious to share the exciting news with her little brother. So in a couple of days the family will be heading out to see The Wiggles! Melody is counting down the sleeps till we leave.
To add to her excitement Melody received a delivery today. The Wiggles sent her a wonderful package filled with gifts along with a letter. She was so surprised and happy. Thank you so much Wiggles for everything you have done for our Melody. She is all smiles and so anxious to see you perform this week. I'm sure Melody and her brother Spencer will be dancing the whole show. We would also like to thank Alicia for everything she has done for Melody. You play a part in all this as well and many thanks to you from our family
To add to her excitement Melody received a delivery today. The Wiggles sent her a wonderful package filled with gifts along with a letter. She was so surprised and happy. Thank you so much Wiggles for everything you have done for our Melody. She is all smiles and so anxious to see you perform this week. I'm sure Melody and her brother Spencer will be dancing the whole show. We would also like to thank Alicia for everything she has done for Melody. You play a part in all this as well and many thanks to you from our family
10/28/10
IWK Trip
Well we are back from yet another IWK trip. Melody did great for her tests. She is very smart to do all that and not complain. We are very proud of her. On this trip Melody also brought some treats and little gifts for Buddy and also some for him to give out to the kids who won't be able to go trick or treating this year.
She really enjoys her time with him. He makes everything so much easier for Melody. He is definitely a blessing to the hospital and us. Melody had a few tests this visit but no results yet. We are once again playing that dreaded waiting game. Hoping we won't be waiting more than a couple of days. The one I am most anxious for is her bone density. It would be so nice to tell her she can go skating for her birthday. She would be so happy!!! Keeping our fingers crossed.
10/26/10
"The Wiggles"
Monday morning we headed over to the C100FM studio. It was an early morning for us but Melody was up and ready faster than she's ever been. She was so excited to be meeting The Wiggles! She was so amazed when they walked into the room. It was a very special treat for her to get to meet them. We watched them do a radio interview, sing a song and then we had our picture taken with them. Melody gave them some pictures she worked very hard on and they autographed her DVD. She was in such a good mood that when we went over to the IWK afterwards she didn't get as upset as she normally does for her tests. She made sure to tell all the nurses and doctors about her great morning with The Wiggles! She wanted to go see their concert with her little brother Spencer but unfortunately with expensive trips to the IWK that would be hard for us to do. However meeting them is something she will be talking about for a very long time. Thank you very much to C100FM and The Wiggles for making Melody's day so special. It meant so much to her.
"Thank You CAA"
Friday morning we got a wonderful phone call. CAA has given us a one year membership to help make sure Melody makes it safe and sound to and from the IWK. It really puts our mind at ease knowing if we have any kind of car troubles we won't be stuck. It really is amazing that CAA did this for us. Thank You so much for looking out for our little girl during her many travels to and from the IWK.
10/18/10
Children's Wish Foundation Parade
Melody raised $384 for the Children's Wish Foundation Parade that happened on Sunday Oct. 16th. In total $1985 was raised through pledges and donation cans that were filled along the parade route. Unfortunately it did rain but that didn't stop people from being generous and giving to this worthy cause. Melody had fun on the float throwing M&M's to anyone she seen on the sidewalks. She made sure to bring Roary along for the ride. It was a great day spent with great people and it was all made possible by Tracy O'Toole. She organized the event along with other events in the past and plans for more in the near future. Melody's family would like to say Thank you to Tracy for all her hard work and all the wonderful volunteers who helped her. Melody would also like to thank all who pledged her and all those who gave a donation the day of the parade. Every penny counts!!!
9/24/10
Melody's 1st couple of weeks at school
Melody is really enjoying all the new friends she has made at her new school. Her teachers say she is fitting in perfectly. Unfortunately Melody has now been out of school a week and she is missing it terribly. She started out with a normal cold but now it's gotten worst and not showing any signs yet of getting better. We've been to emergency and no signs of infection so that is good news. I guess this is one of those times where we just have to wait it out and see how things go. I hope she can go back to school soon. Her class made her a get well card and her teacher delivered it. It made her so happy. Thank you to her classmates for being so thoughtful. It made her day much better.
Melody also received another wonderful surprise this week. She had a dozen pink roses with a snuggly Teddy bear delivered. She was so surprised when the delivery came to the door asking for Melody Morais. I don't think her smile could have got any bigger than it was that moment.
A big thank you to Jon Osborne for such a thoughtful gift. You really brightened up Melody's day. She is loving her big bouquet of roses. She is anxious to go back to school to tell her friends. I will post again soon with updates on how she is feeling.
Melody also received another wonderful surprise this week. She had a dozen pink roses with a snuggly Teddy bear delivered. She was so surprised when the delivery came to the door asking for Melody Morais. I don't think her smile could have got any bigger than it was that moment.
A big thank you to Jon Osborne for such a thoughtful gift. You really brightened up Melody's day. She is loving her big bouquet of roses. She is anxious to go back to school to tell her friends. I will post again soon with updates on how she is feeling.
9/8/10
1st Day At A New School!
We are back from another trip to the IWK. I was happy to see the doctors really paying close attention to the issues with Melody's eyes, arms, and legs. She needs to be seen by a neurologist to get more answers. So now we are waiting for a date. I'm sure it won't be a long wait but every day can feel like a week if you don't find a way to pass the time.
Melody started grade 3 at her new school on Tuesday. She was so happy when she got off the bus and had lots to talk about. She's fitting in so well and making friends. Her principal and teachers are well aware of her situation and doing everything they can to make sure Melody is safe and fitting in with the other kids. It is so comforting to know that they are looking out for her.
Melody started grade 3 at her new school on Tuesday. She was so happy when she got off the bus and had lots to talk about. She's fitting in so well and making friends. Her principal and teachers are well aware of her situation and doing everything they can to make sure Melody is safe and fitting in with the other kids. It is so comforting to know that they are looking out for her.
8/4/10
A Quick Update on Miss Melody
Well since we got back from Florida we have had some ups and downs. Melody was admitted in the hospital for a few days at one point because she had a stomach virus. It was scary to see her so sick. After that things went good for a little while. She's made a couple more trips to the IWK with Teddy bears for the children. She loves doing nice things for them. It really boosts her spirits. We've had two scares with Melody's levels reporting high numbers and we were worried about her liver and kidneys. Thankfully things went back to normal both times. The most stressful part is the waiting to see what will happen once we find out that her levels are off. A week of waiting seems like months. It's been 4 weeks however and so far her levels are fine. Let's hope it continues!
With the summer here Melody is finding it hard not being able to be out in the sun to play with her friends. She does have a friend who comes over a lot to play Nintendo DS and WII with her. They have so much fun and it keeps Melody smiling. She gets to go out after supper to play. This usually means playing in the sprinkler with her brother and friends. They have lots of fun.
Melody has been having issues with her legs, arms and eyes. The doctors have not been able to figure it out yet. On our next visit (which is soon) I'm really going to push for answers because it is getting much worst. Seeing how it has progressed in just a couple of weeks is scary. I'm sure the IWK will have a better idea on our next trip. Well I think that brings everything up to date. Her next IWK visit is soon. I hope I will have good news to post!
6/7/10
A Dream Come True...
Melody and her family would like to thank everyone who made her wish so special. We had an amazing time and made lots of wonderful memories. So many things happened on our trip that blogging about it all was very overwhelming. I decided to make a little video instead. It still doesn't show all the little special things that was done for her but you get the idea. Thank you Children's Wish Foundation for making Melody's wish come true. The things you did to make sure Melody had the best time ever was truely amazing. Melody will never forget what you did for her. You will hold a special place in our hearts forever. Thank You just doesn't seem like enough. A big Thank You also to Give Kids the World, Disney World, Universal Studios and Sea World. Every day brought new surprises. Your staff was always so cheerful and helpful. We never had to wait in lines, got to meet all the characters, lots of presents, personal meet and greets, always had the best seats at the shows...etc. Melody will never forget her trip to Florida. You made Melody's wish extra special.
4/23/10
Google AdSense
Google has removed all ads from Melody's site and all money made from it as well. They sent us an e-mail saying that after reviewing their records, they determined that our AdSense account poses a risk of generating invalid activity. Because of this they felt it necessary to disable our AdSense account. From what I understand from the e-mail they found too many clicks from people who were not supporting the companies but just clicking to give Melody money. We can make an appeal to this and plan to do so. So I would like to make it clear that clicking for the sake of clicking is considered fraud and will not benefit Melody or her site. To those that were doing the clicking, I'm sure you meant well but if we are allowed to have AdSense again please only click on the Ads you truly are interested in supporting and visiting. Thank You...
3/9/10
1st Day Back!
Well Melody is finally back in school. She was so excited to see all her friends again. She's been out for a few months so it was a really big day for her. We weren't too worried about her going back because her school really looks out for her. They know all about her needs and make sure she isn't left out in any way. She was very tired when she got home but was anxious to go back this morning. Thank you to her school for doing all the little things you do to help Melody.
As for everything else... Melody is still pretty much the same. Her rheumatoid arthritis is still acting up and that makes it hard for her to move around in the morning. She also gets stomach aches that really seem to give her a lot of pain. I hope they ease off soon. She still doesn't get much sleep but we know that is due to the medications. She's use to it now and doesn't get as upset over it as before. On a good note, spirits are very high in the house now that we have our dates for the big Disney World trip! Melody is so excited! You can always hear her and her brother talking about everything they will see when we go. It's really cute to listen to them talk about it. I'm sure the excitement will only grow as the wait gets shorter.
As for everything else... Melody is still pretty much the same. Her rheumatoid arthritis is still acting up and that makes it hard for her to move around in the morning. She also gets stomach aches that really seem to give her a lot of pain. I hope they ease off soon. She still doesn't get much sleep but we know that is due to the medications. She's use to it now and doesn't get as upset over it as before. On a good note, spirits are very high in the house now that we have our dates for the big Disney World trip! Melody is so excited! You can always hear her and her brother talking about everything they will see when we go. It's really cute to listen to them talk about it. I'm sure the excitement will only grow as the wait gets shorter.
2/23/10
Melody's journey with JDM so far....
Since we posted this video Melody has brought another 60 Teddy bears to the children being seen at the IWK Hospital. We are very proud of her for having such a big heart and wanting to help other children who are sick.
2/21/10
Burn The Bill!
This was so funny and heartwarming that I thought it deserved a blog all it's own. After having a good visit at the IWK and being so proud of Melody for doing so great on C100Fm and donating 87 teddy bears to the sick children, (knitted by woman in our local area) I figured a fun evening for Melody was in order. We picked up our good friend Lisa and headed to Jack Astor's for supper. There's always such a great atmosphere there. The food was great and Melody really enjoyed herself. Our waiter was Tony and he was really nice. The place was packed! Once we were finished eating we could hear some cheering getting pretty loud on the pub side. It was growing louder and louder and getting closer but we couldn't make out exactly what they were saying. I thought somebody won a gold for Canada and Lisa thought it was someones birthday. Finally we had a view of what was going on. There was a single file parade of the (many) employees and they were clapping their hands and chanting "Burn The Bill" over and over. Finally it happened. After a couple of minutes of confusion it became clear about what was going on. They made their way over and stopped at our table and the manager (Dave) came through the crowd and told us that tonight we did not have to worry about our meal, it was on them. Then he put a bucket in the middle of our table and actually lit our bill on fire! "Burn the Bill" We were in shock, Melody was so amazed by the whole thing. It was great! Tony had heard a little of Melody's story and I guess he told his manager about her. Melody talked about that night for 3 days non stop. So I would like to thank Jack Astor's in Darthmouth for what they did for us. Melody is hooked and has decided she wants to eat no where else but there from now on when we make our long trip to the IWK. I don't ever think she will forget that evening. Thank You so much!
A Busy Visit to the IWK
Well this was a very busy visit to the IWK for Melody. First I will start with saying that Melody had a pretty good visit with her doctor. She was very brave for her tests and made us very proud of her. The doctor discovered that Melody now has Asthma and also that her Rheumatoid Arthritis is also acting up in some of her joints. Mostly her ankles so getting up in the morning is usually a challenge for her. The doctor did prescribe some medications and is confident that they will help.
Melody finally got to deliver the 87 teddy bears to the IWK for the sick children that she was anxiously waiting to do. She was so happy to be doing something nice for the kids there. The hospital took a few pictures of her and Buddy the Clown holding all the bears. It was very cute. Melody also got to talk on C100FM for their IWK radio marathon. She wasn't shy at all and did great. She had everyone in tears as she told her story. Another proud moment for mom & dad!
A big thank you to the woman in our area who were so kind to donate all those Teddy Bears to Melody for her to bring to the IWK. We know you put a lot of time and love into each one. Melody was so happy to take them to the sick children. Thank you so much!
Melody finally got to deliver the 87 teddy bears to the IWK for the sick children that she was anxiously waiting to do. She was so happy to be doing something nice for the kids there. The hospital took a few pictures of her and Buddy the Clown holding all the bears. It was very cute. Melody also got to talk on C100FM for their IWK radio marathon. She wasn't shy at all and did great. She had everyone in tears as she told her story. Another proud moment for mom & dad!
A big thank you to the woman in our area who were so kind to donate all those Teddy Bears to Melody for her to bring to the IWK. We know you put a lot of time and love into each one. Melody was so happy to take them to the sick children. Thank you so much!
2/4/10
A Special Wish!
Right before Christmas Melody had a very special day. Roary the Wish Lion from the Children's Wish Foundation came knocking on our door along with two of his friends (volunteers). She was so surprised! Melody was told that she was going to be able to have her wish come true. Sooo... Melody has wished for a trip to Disney World to be Princess for a day. Everything is in the works to make sure Melody has the best trip ever. It is amazing how the Foundation takes such care in every little detail while planning this big trip for our family. This is going to be so wonderful for Melody and all of us as a family. Thank You Children's Wish Foundation for making our little girl's dream come true. She can't wait to go!
2/3/10
A Quick Review...
Since the last time we blogged on here we have made a few more trips to the IWK. Some were planned and others were not. We did have a scare with her liver but happy to report things are looking much better. We have another trip coming up in February concerning Melody's cough which she has had for a few months now. They have a few ideas but nothing certain yet. More tests will be done on this visit to get our answers. Not looking forward to all the hospital time but I'm sure Buddy will be there to help it pass by!
During our visit at the IWK before Christmas Melody made some bracelets for Buddy the Clown to give to some patients along with a box of candy canes. She made these bracelets from a bead set she had received as an early Christmas gift the night before from her aunt. She was sad for the children who had to be in the hospital at Christmas time and wanted to help them. We were so proud of her thoughtfulness. Some wonderful ladies in our neighborhood heard about this and has donated a whole lot of handmade teddy bears for Melody to take to the IWK on our next trip for the children. She is so excited! It makes her so happy to help the kids there. She's our little angel! Melody, Mommy & Daddy are very proud of you for caring so much for others.
During our visit at the IWK before Christmas Melody made some bracelets for Buddy the Clown to give to some patients along with a box of candy canes. She made these bracelets from a bead set she had received as an early Christmas gift the night before from her aunt. She was sad for the children who had to be in the hospital at Christmas time and wanted to help them. We were so proud of her thoughtfulness. Some wonderful ladies in our neighborhood heard about this and has donated a whole lot of handmade teddy bears for Melody to take to the IWK on our next trip for the children. She is so excited! It makes her so happy to help the kids there. She's our little angel! Melody, Mommy & Daddy are very proud of you for caring so much for others.
Christmas Time at our House!
Christmas time for us this year was great! We got together with family and the kids are pretty sure Santa landed on our roof on Christmas Eve. It was the best Christmas yet. We didn't think about Melody and JDM or worry about all the little things we normally have to worry about. We decided to just enjoy the holiday and that is exactly what we did. We even had a few blessings from neighbors and friends. Christmas supper was at our house this year and Melody said grace for us. It was perfect!
11/18/09
A Special Letter...
Melody received a letter in the mail today from a teacher and her class of 3 students who live in Seoul, South Korea. She was so excited to get a letter from so far away. They told her all about their school and city. They also told her about the things they eat and like to do in their spare time. She also enjoyed the stickers they sent her that are made special for their school. So we would like to say thank you to Natalie, Stella, Gloria and Sue for making Melody smile today. She has a map of the world on her wall and has put a sticker right over your city to show she got a letter from you. xoxo
Longest Drive Ever!
We have once again returned from another trip to the IWK. The drive there was the worst yet. The rain was so heavy at times and caused zero visibility. This made the trip really long and stressful since we had to slow down and even stop at times. To add to the stress, Melody wasn't feeling good. Her stomach was really upset. I was glad to arrive safely.
Melody did have a good visit at the IWK this time. She got to laugh with Buddy the Clown (The one thing that she looks forward to when we go there) and he showed her a new magic trick. She was pretty excited about it. The doctor was pleased with her progress this time. Melody has been having problems with nausea a lot lately so the doctor prescribed something to help with that. So far so good! Let's keep our fingers crossed that it stays that way. Another thing Melody was happy about was meeting up with a schoolmate of hers at the hospital. He just happened to have an appointment there on the same day as her. She thought it was great to see a familiar face from our area. Our drive home the next day was much better. No rain or snow. I'm not looking forward to the winter trips but we can deal with that when the time comes. Our next trip to the IWK will be in a couple of weeks.
Melody and I would also like to thank her very good friend Andrew and his mom for taking the time to make Melody a CD with all her favorite songs to listen to on the way to the IWK. Melody and I have a routine that we do when leaving on these trips. We pop in a CD of Miley or Hannah, put up the volume and sing along with it. Party in the USA is usually the one to get us started. Somehow the CD got lost since our last trip so Andrew made sure it was the first song on the CD he made for us. Thanks again! We really enjoyed it and will be listening to it again on our next trip!
Melody did have a good visit at the IWK this time. She got to laugh with Buddy the Clown (The one thing that she looks forward to when we go there) and he showed her a new magic trick. She was pretty excited about it. The doctor was pleased with her progress this time. Melody has been having problems with nausea a lot lately so the doctor prescribed something to help with that. So far so good! Let's keep our fingers crossed that it stays that way. Another thing Melody was happy about was meeting up with a schoolmate of hers at the hospital. He just happened to have an appointment there on the same day as her. She thought it was great to see a familiar face from our area. Our drive home the next day was much better. No rain or snow. I'm not looking forward to the winter trips but we can deal with that when the time comes. Our next trip to the IWK will be in a couple of weeks.
Melody and I would also like to thank her very good friend Andrew and his mom for taking the time to make Melody a CD with all her favorite songs to listen to on the way to the IWK. Melody and I have a routine that we do when leaving on these trips. We pop in a CD of Miley or Hannah, put up the volume and sing along with it. Party in the USA is usually the one to get us started. Somehow the CD got lost since our last trip so Andrew made sure it was the first song on the CD he made for us. Thanks again! We really enjoyed it and will be listening to it again on our next trip!
11/13/09
No School For Our Little Girl...
I figured it was time for an update on our Princess Melody. There has been a couple of things but nothing too serious. First of all Melody is no longer in school. With the H1N1 going around we along with our family doctor felt it was best she stay home. Her doctor at the IWK also agreed with our decision. No need to be taking risks now with Melody. She is dealing with enough right now as it is. She doesn't go out in public at all anymore so she is really missing her friends. Can't wait for this H1N1 virus to settle down so we can get back to our semi-normal life.
During our last visit to the IWK Melody's meds were adjusted a little for her. She is really swelled a lot more than they were expecting so with these adjustments we should be seeing some improvment soon. I'm sure no one will be happier than Melody about that. She isn't comfortable at all. Her cheeks feel heavy and her clothes don't fit her the way she likes. Hopefully in the days to come she will be feeling a little better.
Another thing is Melody's birthday that is coming in just a couple of weeks. We were suppose to have a big party for her and all her school friends but again with the virus going around we can no longer go with that plan. Melody was pretty sad about it. We promised her that we would think up another way to make her day extra special. I have a couple of ideas but nothing for sure yet. We better figure it out soon however because December 6th is coming fast.
Melody is still getting very excited about the letters she receives in the mail. She even writes back to a few each week. Every return address is kept so that we can write back eventually. All letters are put into a plastic sleeve and then into her special big binders. She is taking one of the binders with her on her next visit to the IWK to show the Team that works with her. She's very proud of them and they makes her smile. So please pass her blog on to everyone you know so that Melody can keep getting letters that brighten up her day! Our next trip to the IWK is in 2 days. Hope all goes well. I always get a little more stressed right before we leave. I will be sure to post how everything goes when we return. Thank you to everyone who has sent our Princess Melody a card or letter. It means a lot to us how people from all over the world are taking time to send something to brighten our little girl's day.
During our last visit to the IWK Melody's meds were adjusted a little for her. She is really swelled a lot more than they were expecting so with these adjustments we should be seeing some improvment soon. I'm sure no one will be happier than Melody about that. She isn't comfortable at all. Her cheeks feel heavy and her clothes don't fit her the way she likes. Hopefully in the days to come she will be feeling a little better.
Another thing is Melody's birthday that is coming in just a couple of weeks. We were suppose to have a big party for her and all her school friends but again with the virus going around we can no longer go with that plan. Melody was pretty sad about it. We promised her that we would think up another way to make her day extra special. I have a couple of ideas but nothing for sure yet. We better figure it out soon however because December 6th is coming fast.
Melody is still getting very excited about the letters she receives in the mail. She even writes back to a few each week. Every return address is kept so that we can write back eventually. All letters are put into a plastic sleeve and then into her special big binders. She is taking one of the binders with her on her next visit to the IWK to show the Team that works with her. She's very proud of them and they makes her smile. So please pass her blog on to everyone you know so that Melody can keep getting letters that brighten up her day! Our next trip to the IWK is in 2 days. Hope all goes well. I always get a little more stressed right before we leave. I will be sure to post how everything goes when we return. Thank you to everyone who has sent our Princess Melody a card or letter. It means a lot to us how people from all over the world are taking time to send something to brighten our little girl's day.
9/26/09
Melody Update!
I'm happy to report that Melody is doing well. She was having a hard time with a nasty cold but is getting over it slowly but surely. We have had many trips to the IWK and she is still brave each time we go. Our most recent trip she had a couple of tests done that were new to her. She was very nervous but still did them without any fuss. We are so proud of her! Another thing is how Melody handles the long car drive to and from Halifax. She never complains about it. We know she gets stiff so we do try to make stops along the way for her to get out and stretch.
Melody is loving school and being able to see all her friends. She has missed a lot of days already but with the help of her teacher and principal she is not behind in her classes. It's great to see how her school is supporting her with all her needs. It's a comfort to be able to send your child to school and not have to worry.
Melody has not been missing going outside lately and that is all thanks to two things. One is our new family puppy. Melody plays with Rory all the time but her favorite time is tummy rubbing time which Rory takes full advantage of. The other thing is her good friend Andrew. He comes over to play Nintendo DS with Melody on a regular basis. It's so nice to hear them in her room laughing and having fun. She's so happy when he comes over. We are very happy Melody has found such a good friend.
I'm not sure when our next trip to the IWK is but I know it will be soon. Just waiting to hear back from the doctor. Unfortunetly these trips have become a permanent thing. We are worried about traveling during the winter months but will cross that hurdle when we get to it. We are taking everything one day at a time.
Volunteers who helped out
Our family would like to express our many thanks to all the people who volunteered their time and worked so hard to make Melody's fundraiser a great evening for everyone. It was very touching to see how the community came together to help our little girl.
Morris (The Brains behind it all) & Anne Stevens, Jean-Eudes Godin & Elaine Levesque-Godin, Anne Marie LaPointe, Sue Roy, Valerie Roy, Nicole Carrier, Tanya Hickey, Ron Bourque, Timmy Stevens, Tray Horton, Jerika Driscoll,Carl Doucet, Sally LaPointe, Sue LaPointe, Walter Gauthier (Master of Ceremony for the evening), High Lead (Thank you so much for everything you have done), St. Gabriel's Parish (for the hall)
We would also like to thank all the wonderful people who performed. So much talent on stage made the evening perfect. Thanks to the public for coming out and supporting our little angel. You made this night a success and for that we are very grateful. Our family is lucky to live within a community that cares so much.
If we have missed someone we do apologize. Please leave a comment or send an e-mail so that we can get the name up on the post ASAP because everyone who volunteered was important to the fundraiser for Melody. Thank you!
Morris (The Brains behind it all) & Anne Stevens, Jean-Eudes Godin & Elaine Levesque-Godin, Anne Marie LaPointe, Sue Roy, Valerie Roy, Nicole Carrier, Tanya Hickey, Ron Bourque, Timmy Stevens, Tray Horton, Jerika Driscoll,Carl Doucet, Sally LaPointe, Sue LaPointe, Walter Gauthier (Master of Ceremony for the evening), High Lead (Thank you so much for everything you have done), St. Gabriel's Parish (for the hall)
We would also like to thank all the wonderful people who performed. So much talent on stage made the evening perfect. Thanks to the public for coming out and supporting our little angel. You made this night a success and for that we are very grateful. Our family is lucky to live within a community that cares so much.
If we have missed someone we do apologize. Please leave a comment or send an e-mail so that we can get the name up on the post ASAP because everyone who volunteered was important to the fundraiser for Melody. Thank you!
Sponsors for Melody's Fundraiser
Our family would like to thank all the sponsors who helped make Melody's fundraiser such a huge success. Thank you all for your support!
Ramada-Crystal Palace (Moncton), Pepsi, St. Gabriel's Parish, Superstore (Bathurst), Lounsbury (Dalhousie), Allen Roy, Rich-Art, Antique Plus, Golden Image, Jeannine Tours, Easy Home, Victor Bernard & Son, Village of Belledune, Anyshore Oilfield Consulting, Doucet's Conveyors, Michaud Petroleum, Moosehead Brewers, Restigouche Guardian Pharmacy, Jimmy Hilliard, Port of Belledune, NAPA, Max 104.9, Dairy Delight, Joe's Dart Arcade, Belledune Gas & Convenience, Greco (Beresford), Pizza Delight (Dalhousie), Les Titan, Hathaway Ford, Pizza Delight (Bathurst), Squire Green Gold Club, Celebrity Jewelers, MacNairs Garage, Jean Coutu (Bathurst), Jardin Robert & Diane, Foodland, Sobeys, Walmart, Tim Hortons (petit Rocher), Tim Hortons (Vanier Blvd.), Sears Portrait Studio, Robertville Music Store, Joan's Paint Center, Dan's Mechanic Plus, Home Hardware (Dalhousie), Northern Furniture, Wine Kitz, Centre du Cyclist, Zellers, NB Power, Ryder, Sunny Conner LTD., LoonieLand, Danny's Restaurant, Mazerolle Car Detailing, Xstrata, Spantec, L. Doucet & Son, Dr. Patrice Brisson, MacMillian's Funeral Home, Parkview Superette, Targett's Window & Doors, Smearers, Shirley's Variety
I hope we didn't forget anyone but if so we do apologize and please send us an e-mail or comment so that we can get the company posted ASAP. Thank you so much for all your help.
Ramada-Crystal Palace (Moncton), Pepsi, St. Gabriel's Parish, Superstore (Bathurst), Lounsbury (Dalhousie), Allen Roy, Rich-Art, Antique Plus, Golden Image, Jeannine Tours, Easy Home, Victor Bernard & Son, Village of Belledune, Anyshore Oilfield Consulting, Doucet's Conveyors, Michaud Petroleum, Moosehead Brewers, Restigouche Guardian Pharmacy, Jimmy Hilliard, Port of Belledune, NAPA, Max 104.9, Dairy Delight, Joe's Dart Arcade, Belledune Gas & Convenience, Greco (Beresford), Pizza Delight (Dalhousie), Les Titan, Hathaway Ford, Pizza Delight (Bathurst), Squire Green Gold Club, Celebrity Jewelers, MacNairs Garage, Jean Coutu (Bathurst), Jardin Robert & Diane, Foodland, Sobeys, Walmart, Tim Hortons (petit Rocher), Tim Hortons (Vanier Blvd.), Sears Portrait Studio, Robertville Music Store, Joan's Paint Center, Dan's Mechanic Plus, Home Hardware (Dalhousie), Northern Furniture, Wine Kitz, Centre du Cyclist, Zellers, NB Power, Ryder, Sunny Conner LTD., LoonieLand, Danny's Restaurant, Mazerolle Car Detailing, Xstrata, Spantec, L. Doucet & Son, Dr. Patrice Brisson, MacMillian's Funeral Home, Parkview Superette, Targett's Window & Doors, Smearers, Shirley's Variety
I hope we didn't forget anyone but if so we do apologize and please send us an e-mail or comment so that we can get the company posted ASAP. Thank you so much for all your help.
9/21/09
Fundraiser was a huge success!
We had another fundraiser this past weekend. It was a silent auction and variety show. We are so blessed to live in an area where people have such kind hearts. We had a great turn out at the fundraiser and Melody was happy to go out and see how much love and support she had. Thank you to everyone who helped make it all happen. So many people worked hard for that night. And to Morris... You did it! You should be very proud because the way you stepped up to help us is something we will never forget. Thank you so much. I will post a list of all the companies and people who have donated in one way or another for this fundraiser on here as soon as I can. I'm going to try to have it up by tonight. Thanks again everyone for making this event such a huge success!
1st Day of School!
I know this is late in getting posted but things are slowly getting back to normal around here so I think we will be able to post more often now.
Melody had a great first day of school. She was so happy to see all her friends again. She was pretty tired when she got home but had a good sleep and was 100% ready for day two when she woke up the next morning. Her school is really doing everything they can to make sure she is safe and comfortable so I'm not worried at all. She has great teachers and she loves her school mates. So happy Rob and I were stressed for nothing! I wish I was as strong and brave as Melody is. Rob and I are so proud of her!
Melody had a great first day of school. She was so happy to see all her friends again. She was pretty tired when she got home but had a good sleep and was 100% ready for day two when she woke up the next morning. Her school is really doing everything they can to make sure she is safe and comfortable so I'm not worried at all. She has great teachers and she loves her school mates. So happy Rob and I were stressed for nothing! I wish I was as strong and brave as Melody is. Rob and I are so proud of her!
8/9/09
A Little Note...
All comments and e-mails will be reviewed by both my husband and myself before it can be posted or shown to Melody. We need to keep Melody's best interest in mind when it comes to these things. Thank you all so much for all the love you have been sending our daughter. Please keep sending posts and letters cause we love hearing from you. Melody really enjoys it when we read them to her and we love seeing her smile! xoxo
7/17/09
Fundraiser for Melody
The Fundraiser dance for Melody which took place at the Jacquet River Legion On July 25th was a success!
It was great to see friends and family out supporting our little Melody. So many people helped out and volunteered their time to make this night so wonderful. Morris, Rob and I know how hard you worked to pull this night together. Thank you so much for everything. Also a big Thank You to High Lead for entertaining everyone with great music all night. Everyone who came had a good time. This community has shown so much support for Melody. Rob and I want to Thank everyone for coming out!
7/16/09
Some Well Deserved Thanks...
Rob and I would like to thank everyone for their letters and gifts that Melody has been getting. It's nice to see her smile and get so happy to see she has mail. She looks forward to checking the mail everyday!
A special thanks to the Full Gospel Country Church for their generous gift. We were touched by your kindness and love. We would also like to thank Morris and Lois along with anyone else who is involved in all the hard work they are doing to organize a fundraiser for Melody. It means a lot to us that you are doing this for our little girl.
Rob and I are touched by all the support and love Melody is receiving. We will never be able to express what it means to us. Thank You just doesn't seem like enough but when we say it I promise it is coming straight from our hearts with as much love as we can give. "Thank You"
A special thanks to the Full Gospel Country Church for their generous gift. We were touched by your kindness and love. We would also like to thank Morris and Lois along with anyone else who is involved in all the hard work they are doing to organize a fundraiser for Melody. It means a lot to us that you are doing this for our little girl.
Rob and I are touched by all the support and love Melody is receiving. We will never be able to express what it means to us. Thank You just doesn't seem like enough but when we say it I promise it is coming straight from our hearts with as much love as we can give. "Thank You"
Unexpected Trip Back to the IWK
Melody was feeling pretty bad a couple of weeks ago. She could barely stand and her face was swollen really bad, especially around the eyes. We decided to call the IWK. We were told to have her there first thing in the morning. So we basically hung up the phone, packed quickly and left. So on July 2nd we were back in the doctor's office with Melody. It turns out that Melody was having what is called a flare up from the disease. They thought of admitting her but decided in the end to let her go home. So after an adjustment to her medication and a date to return we were able to leave.
On July 13th we were back at the IWK once again. This time it was a planned visit. These visits are so hard on Melody. Staying quiet during exams, listening to "grown up" talk, waiting, and usually going through tests of some kind. However the great thing about the IWK is that Buddy is always there to make her feel better. Buddy is a wonderful clown who always finds time to make Melody smile and giggle when we go there. Jenn from Child Life is another person who makes things less scary for Melody. She goes with her to do the tests and makes sure Melody goes through them without being too scared or stressed. So a big thank you to Buddy and Jenn for helping Melody through all this. As for this past visit... For once we left without any big concerns. It was nice to drive home and not be in a panic about something. The doctor's only big concern was that Melody's white blood cells are pretty high. We will be going back to the IWK on July 28th and they will do more tests then and decide what will need to be done. Rob and I hope everything will be fine.
On July 13th we were back at the IWK once again. This time it was a planned visit. These visits are so hard on Melody. Staying quiet during exams, listening to "grown up" talk, waiting, and usually going through tests of some kind. However the great thing about the IWK is that Buddy is always there to make her feel better. Buddy is a wonderful clown who always finds time to make Melody smile and giggle when we go there. Jenn from Child Life is another person who makes things less scary for Melody. She goes with her to do the tests and makes sure Melody goes through them without being too scared or stressed. So a big thank you to Buddy and Jenn for helping Melody through all this. As for this past visit... For once we left without any big concerns. It was nice to drive home and not be in a panic about something. The doctor's only big concern was that Melody's white blood cells are pretty high. We will be going back to the IWK on July 28th and they will do more tests then and decide what will need to be done. Rob and I hope everything will be fine.
7/1/09
A Review of Melody's Past Couple of Weeks
Sorry it has taken so long to get some updates posted. Things have been a little crazy around here. I guess I should probably start off by telling you a little about everything Melody has gone through the past couple of weeks.
Melody was admitted at the Bathurst Hospital on June 1st, 2009. During her stay she had many blood tests, urine tests, ultra sounds, and x-rays. She was discharged on June3rd in order for us to take her to the IWK Children's Hospital in Halifax, Nova Scotia. Melody was admitted on June 5th at the IWK. During her stay she had many tests and visits from specialists. It was hard for us to watch her go through all that. She was very scared and some tests were painful for her. We are thankful for ChildLife and Buddy the Clown to help her through it all. She was finally discharged on June 12th knowing we would be back in a couple of days for surgery. Melody had surgery on her leg June 15th at the IWK. They needed a biopsy of her leg muscle to be sure it was JDM and to see the extent of the damage it had already caused. We went back to the IWK on June23rd for the results and started her treatment the following day.
Melody is taking many different medications and the side effects from them are pretty scary. So far she has experienced a few of them... Headaches, weakness, always tired, swelling, and a few others.
My husband and I would like to point out one thing that we are very proud of. With all the pain, drastic change in diet, medications, and many restrictions in everyday life... Melody does not complain about any of it. She is so strong to deal with so much at her age. She is our tough cookie and we are very proud of her.
6/10/09
The more, the merrier!
**This was originally the first post on Melody's blog, but we've added it permanently under the header so that people visiting for the first time will know what it is all about. We're keeping this post so we won't lose all of the heartfelt comments that mean so much!**
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