**For the Latest Personal Updates on Princess Courtney,
Please Visit her New CaringBridge Journal, Here!!**

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Saturday, April 18

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Monday, April 13

I just read this post by Ayana Mack, the 104 KRBE radio announcer that was at the zoo on Friday. It really touched my heart, you just never know which people will be inspired by our precious princess. Today is Courtney's 6th MIRACLE birthday! Thank you Lord for giving us this time with Courtney and sending such wonderful people in to our lives. The blog entry is April 12 and the title is I met an angel.
http://getyomackon.blogspot.com/?zx=10c3e468aa6460e

Sunday, April 12, 2009
I met an Angel
Happy Easter to every one!! So today I made it to two church services which is actually 2 more than I went to last year!!! I have decided to really take the time to work on myself and my spiritual, financial, physical growth. Since I have decided to do this (under the leadership of my parents church, and a very special life coach) I have seen an instant change in my character and how people are responding to me. So I plan to blog about all of my experiences both personal and professional so maybe you can get something out of my experiences too.

I'm a professional radio personality and I live in Houston Texas. One of my responsibilities as a radio personality is to do "appearances" at different businesses to promote what ever event they would like us to talk about. Well On Friday I had a remote at the Houston Zoo. It was called Wizard of OZ weekend and it was sponsored by the zoo and a company called Broadway Across America. Its funny...but if you really just pay attention, God performs little miracles all the time in our lives. Anyways on with the story...
During this promotion, the Houston Zoo had Dorthy from the Wizard of Oz come out and take pictures with children on a Yellow Brick road that was painted onto the pavement. It was cute, the yellow brick road lead to the lion, tiger and bear exhibits, which had scenes from the Wizard of oz movie on the glass.

It was an absolutely beautiful and picture perfect day. The children were really excited to see Dorthy. There was one child in particular who just stole the show. Her name was Courtney, Courtney Brook Rosas. Courtney was a 6 year old little girl who had a terminal illness called Spinal Muscular Atrophy type 1. It was impossible for Courtney to sit up, speak, walk, talk, roll over, swallow or even breath on her own. Of course your first thoughts are oh...that's so unfortunate, and I can understand that. But Courtney said so much without even mumbling a word. You could see in this child's eyes that she had more joy in her heart than any of the kids running around her wheel chair.

So it turns out that Courtney was a Wizard of Oz fanatic!!! She was Dressed up exactly like Dorthy all the way down to her little Red slipper. And her little sister was equally as passionate about the Wizard of OZ and dressed like Dorthy too. They were there with their mother and grandmother. I thought the mother was Courtney's Sister because she looked so young! Turns out Courtney mother had her when she was 16. Can you imagine not only dealing with the fact that you're a single mother, but also a single mother of a child with a terminal illness!! Some people would say "God Why Me?" Some would simply walk away...Not Courtney's mom. I remember my first thoughts when I got to talk to them was wow, this little girl is so blessed! They love her so much. Have you ever been around a new couple? The love is so new and exciting you can feel it? Well, that's how the love in this family was, you could literally feel it.

After speaking to Courtney I learned that doctors said Courtney was only supposed to live to be 2, and here she is 6 years old and just having the time of her life. Anyways, We were doing a drawing to win tickets to see the Wizard of Oz on Easter Sunday. I didn't realize that Courtney and her family had entered to win the tickets. I did the last drawing and unfortunately they didn't win.

The winner was a young lady who I had met at another remote of mine at a club. That lady had waited 2 hours for the drawing as well, and was very excited when she won. Well some how those two families ended up talking, and all of a sudden Courtney's mother is crying. The lady gave Courtney and her family her tickets.


As I type this story on Easter Sunday, I remember something my mother said today in church. Easter is proof that God can take something meant for bad and make it good. We can look at Courtney's situation and say, that's horrible! That little girl is going to die so young! Its not fair. Just like Jesus could have said that's not fair I'm only 33 I don't want to die, this horrible death.... this young! Or you can look at the the other side of the coin. Courtney touched more lives in that 2 hour time span that I saw her, than most people do in a lifetime! Just like Jesus saved more souls in his 33 years on earth than any other person on this planet. Every life has a purpose. Courtney and her family are doing their jobs...are you doing yours?


Read more about Courtney at this link:
www.our-sma-angels.com/CourtneyBrooke

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Saturday, April 11

Here is the update that I sent last Thursday 04/09/09.
We went to the Broadway across America performance of the Wizard of Oz last night. This was Courtney's birthday gift. We had the tickets for weeks in advance. We were blessed to have Courtney's Speech Therapist SueAnne and our much loved Tania to join us on Courtney's special day. The Broadway across America folks in Florida, and Cori from The Hobby Center worked all day long to make arrangements for Courtney to meet Dorothy in person after the show. Poor Courtney started having a high heart rate during the show and we had to leave early though. Kendall cried and cried because she wanted to stay and watch the entire show so much. Such things happen in our lives, with Courtney having SMA, in an instant she can take a turn. Candace and I took Courtney out in the lobby to bag and suction her and put her on oxygen, but Candace said we would have to leave to get Courtney home. Kendall was so funny, when the wicked witch would go on stage, Kendall would hide her ruby red shoes so the witch wouldn't see them on her feet. She said the witch thinks her shoes are powerful. Kendall was singing, everyone thought she was so cute. And of course, Courtney was breathtaking in her dress and her red pigtails. The show was spectacular, I have never seen anything so magnificent before. If you get a chance to see it, please go, it was so much fun

04/11/09 Wizard of Oz Update
We were all so sad because Courtney got sick and we had to leave the play early. We were all so excited that Courtney was going to get to meet Dorothy after the show and Kendall was enjoying the performance so much, it broke my heart that she was so upset about having to leave the show early. She is only four years old but has to sacrifice so much having a sister that is so critically ill.

I heard that Dorothy would be at the zoo on Friday for a short time. I emailed Brian Hill from the zoo and he made arrangements to have tickets waiting for us at guest services and to be escorted past the crowds to get to Dorothy safely. As we got to where Dorothy was, Courtney smiled when she saw her. Courtney even got to meet another of her favorites, the Scarecrow. Noah was not in costume but Candace, Courtney's mom, explained to her who he was. There were so many media people there around Dorothy and the zoo was full with guests since it was Good Friday, school was out. Our local Channel 2 news station interviewed Candace about Courtney and even asked little Kendall some questions. Dorothy and Noah were so kind, they spent so much time with Courtney and Kendall. They treated both our girls like they were celebrities too.

After our visit, Dorothy moved on to where the lions were. I walked over there but there was such a crowd, it was not possible to get Courtney close enough for her to see. We went to the 104 KRBE radio station tent and Candace and Courtney spun the wheel and Courtney won a t-shirt. Kendall won four tickets to the zoo. Candace put two tickets in the drawing to win tickets to the Wizard of Oz show, for a family of four. You had to be present to win so we waited nearby under a tree for forty minutes till the next drawing to see if Courtney would win tickets to the show. We were praying so hard that Courtney would win so she could go back to see the entire performance. We had wished we could afford to buy more tickets to return again. As the time arrived there was a family walking by, they stopped to look at Courtney and Kendall in their Wizard of Oz dresses, commenting about how pretty the girls were. The lady got a ticket and put it in the box. When the radio station lady drew the ticket and called the number out, our hearts sank because they were not Courtney's numbers. The lady who was just talking to Courtney was the ticket winner. Candace saw her get the tickets and turn around to Courtney, Candace was about to congratulate the lady on her good luck when the lady handed the tickets to Courtney and Candace saying Courtney should have the tickets since she was dressed as Dorothy. Candace and I started crying at this wonderful blessing we were receiving. Courtney and Kendall would get to see the play again on Easter Sunday evening.

When we got back to the van I called the ticket office at the Hobby Center and talked to Amanda and Elizabeth to see if it would be possible to change Courtney's tickets to the wheelchair accessible seats. They said yes. And now the miracle grows, Courtney's best friend Hayron, who has the same terminal illness, will be going to the Easter Sunday evening performance also. After we told them about how magnificent the play was, they wanted to buy tickets to go also. We will not be able to sit with them but it is so special that we will be there together. It would be so amazing if Courtney and Hayron could meet the cast performers, before or after the show.

Yes Courtney, MIRACLES do happen!

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Sunday March 15

We went to visit Victor Alvarez and Elizabeth Gearhart this afternoon. I was so excited for Courtney that she was going to meet her "big brother" as we lovingly refer to Victor. Victor was in Houston to visit some of the area colleges that he is interested in for the coming year. I started emailing with Elizabeth on the SMASUPPORT.com chat maybe two years ago.
You have just got to read Victor's book "VICTORious Life". www.VictorAlvarezWeb.com His story is so inspiring.

I thought Victor handled our visit in his hotel lobby quite well. We all were trying to get and keep his attention, all to ourselves, even Courtney. She was more vocal and loud than usual, trying her best to talk to Victor in her own angel language. Courtney looked adorable in her new zebra outfit; Candace had even done her nails in a zebra design. Victor is so charismatic, his smile and personality are wonderful, he had us all laughing. Candace (Courtney's mommy) and Victor are each 22 yrs. old. They were chatting together while I talked with Elizabeth and Yolanda (Victor's adopted mother). I didn't get near enough time with Victor all to myself as I wanted but I did get a big hug and a quick kiss on his cheek. To us, it felt like we were in the presence of a celebrity which in our SMA world Victor is. He is one of our SMA Hero’s; he has not let the many obstacles in his life keep him from having a wonderful life. He is a very intelligent young man who also is a very gifted artist. I am attaching one of his pictures; this one is done all in dots which he did by hand, himself.

I am so happy for Courtney that she is getting to meet others with SMA so she will know that she and her best friend Hayron are not the only two with SMA in the world. Last week we were blessed to get to meet little Veronica St. Onge, her mom Debby and Aunt Karen as they passed through Houston on their drive home from Veronica's Make a wish. This family is amazing. But then again aren't all SMA families amazing? God blessed us all with his most special angels, to care for, to cherish, love and admire.

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Thursday March 12

We are very happy to be home. Last night when Candace was about to give Courtney her bath she noticed Courtney was cooing/angel talking more that usual and she was smiling and smiling. Candace was about to remove the 2x2 drain sponges from the G and the J feeding ports when she saw the J was almost out, Courtney was pushing it out on her own and apparently it felt really good to get the button out or she was just having fun knowing she was going to shock her mommy to no ends when the button came out. Since Courtney got her first G button when she was five months old Candace has always changed/replaced the buttons herself but now the J button goes directly into her intestines. Candace feels quite comfortable replacing the buttons but she had been instructed to just tape it down and go directly to the ER for a surgeon to replace the button then follow with an x-ray contrast study to check for proper placement..
I called ahead last night to Pedi. Surgery to let them know we were going in to the ER so they could have the ER prepared for our arrival. It always makes things easier and faster when they are expecting a vent patient. This time the surgeon on call was not one that we see very often so he didn't know about Courtney having the Bard buttons removed last October. I simply told him on the phone the J button balloon had popped, had come out, to let ER know we were on our way and that was that. The J she had before had the long tube going in her intestines which would have had to be replaced in surgery. So this surgeon had us as a direct admit when we arrived. We had the same ER team this time that we had back in January when Courtney was in for IV fluids with no
admit because of a stomach virus. They were well aware who we were and that we do EVERYTHING for Courtney and NEVER leave her side. I told the ER doctor to get someone from surgery down to replace the button, I have the new replace button, lubricant everything needed for them to just do the simple replacement. Finally the resident surgeon got approval to perform the task, Candace and I assisted and we were done. Then we had to wait forever in x-ray but they were nice and didn't make us move Courtney from the bed we had rolled her down from ER in. Everything looked fine when the X-rays were read, Baystar, our wonderful ambulance service was called to come to pick us up then we went home again after 6 hours.
Now we are praying Courtney didn't pick up anything from all the sick kids there.
When we got home, all the hard work started, disinfecting, washing and replacing everything. Miss Princess slept like an angel all morning long. Candace and I were switching every two hours, it is hard to wakeup after just two hours sleep but we are used to it. One of us stays awake with Courtney at all times. We will return to normal schedule on Friday after all the laundry and everything is caught back up. Whew, this SMA world that we live in is sure a whirl wind. Thanks everyone for all your prayers! We needed each and every one of them. We love you all bunches! Thanks so much MJ and Brenda for all you do for Courtney, we really appreciate you being there ALWAYS to help out and to keep everyone up to date on her.

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Sunday, January 18

God has blessed us with another wonderful adventure for Courtney to add to her little book of life. On Tuesday January 13, 2009 I called a local bowling center,Alpha Lanes to inquire about all the usual things I have to ask about in order to take Courtney out any where. I spoke with the manager, a wonderful lady named Debbie who, after I told her about Courtney having SMA and all her special requirements she said she would be honored to have Courtney visit her bowling center. I was concerned though because she told me there would be some leagues playing there that evening. It is not good to take Courtney out where there is a large crowd of people indoors. I then called the Clear Lake Lanes Bowling Center and spoke with Shaun. He told me there were no leagues playing there on that evening so I decided this might be a better choice for Courtney's safety against catching the flu or RSV. I called Debbie back to let her know about my decision and she totally understood, she wanted what is best for Courtney.

This was going to be our second Girls Night Out with Tania. This time she brought her younger sister Thalia to join us. As we arrived at the center and opened the door there was a sign saying "Welcome Courtney". I said could this be for our Courtney? I couldn't believe how nice these people were to greet Courtney like this. As we entered we met the manager Mike and also met Shaun. They had already saved an area off to the side with two lanes just for us. There were balloons placed all around our area for Courtney, I rolled her around and let her touch each balloon string and helped her hold it. All the girls went to get their shoes and returned to start bowling. Mike and Shaun walked up to us and wanted to present Courtney with something so she could always remember her bowling day. They gave Courtney a very special bowling ball, a Puss in Boots ball from the movie Shrek, they also gave both Courtney and Kendall AMF bowling t-shirts. I was almost to cry, not believing how kind these people were. I spoke a little with Mike getting to know him a little better. In that short time I came to realize that he was a sincere, caring person who truly was thrilled to have Courtney there. He and Shaun kept coming back to see if we needed anything. This evening turned out to be so wonderful and we found out that Courtney loves to bowl! She was smiling as Candace held her little hand and helped her to push the ball down the guard. We would clap and yell for her even if the ball went in the gutter, saying good job Courtney. She loved it! I think we will definitely have to take Courtney bowling again. I will never forget how generous Mike and Shaun were, nor the smiles on Courtney's face.

After we left the bowling center we decided to all go out to eat. We hardly ever do this anymore. We went to the Olive Garden nearby, it was pretty busy and we were told it could take up to thirty minutes to get a table with a place for Courtney to be away from everyone. But once again God blessed us and within ten minutes we were escorted to a large table set off to the side all by its self, perfect for Courtney. We had a wonderful server named Brandon, the best server I have ever had before. He was so friendly and attended to all our needs, he was perfect. Since this was the 13th day of the month, Courtney's birthday date each month, I asked Brandon if they could sing Happy Birthday to Courtney. They sang and it was wonderful.

Later that evening after we arrived home, Courtney started to gag and throw up, we had to take her to the ER just after midnight. As the ambulance was pulling up to the hospital like so many times before, fear took hold of me. I silently thanked God for our wonderful Girls Night Out, for Mike, Shaun and Brandon. I also prayed, please Lord don't let this be the time that you take our angel back to heaven. Just a little more time..

Courtney had IV fluids for several hours and then we were allowed to take her home, trying to keep her from being exposed to so many illnesses that she could get at the hospital. She had another day on Friday of being sick by we were able to handle it at home this time.
Courtney will be having her 6th Miracle Birthday celebration on April 13th.

Watch the Montage of Courtney's Adventure HERE

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Friday, January 16

Today our dear friend Miss Dawne Sweet passed away, cancer took her from us. She suffered through surgery and treatments which all began in September. It all happened so fast, I still can't believe she is gone. Right up until the end she vowed she would return to work as a  Pediatric Occupational Theapist, a job which she loved, she adored all her children.
Our world is a better place having known Dawne's love and friendship. Dawne was so wonderful, always there when we needed her. She helped so much with Courtney's 5th Miracle Birthday Celebration and the Putt Putt Golf Tournament/Silent Auction. Bless her heart she even went through all those pages of paperwork to nominate our family for the Extreme Home Makeover Show. I would have loved to see her face had we of been selected for the program, Dawne was at her best when she was helping others. Dawne was such a good and giving person, and she loved her Courtney! We will miss her dearly... good bye dear friend, until we meet again....

Click Here or Here to Watch Montages Dedicated to Miss Dawne

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Friday, January 2

We spent our New Year's eve with our friends the Elizalde family at their downtown ballroom. We all enjoyed listening to the Mexican music, Courtney's favorite is the El Carnivalito which Tania danced for the first time for Courtney on her 5th Miracle Birthday Celebration last April. There was all kinds of different music played during the evening. Courtney was on the dance floor being twirled around many times, she loved it so much. The food was excellent, lots of tamales, chips, sandwiches and desserts galore. If awards were given for the night I believe Tania and Kendall would tie for the "Dancing Queen" award and Officer Steve Kelly would surely win the "Dancing King" award because he was the most friendly gentleman of the evening, dancing with all the ladies.

This is Courtney's first New Year's party! We want to thank the entire Elizalde family for inviting us to join them in bringing in the New Year!
We all had the best time!

Click here to watch Happy New Year 2009

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Monday, December 29

Holidays November and December 2008
Courtney was busy during November and December with a variety of outings and special events.
Eric and Seidy Elizalde wedding reception, Aunt Sarah's 18th birthday, new family pictures taken by Tania at Helen's garden, Thanksgiving dinner with our fire fighter friends, a visit from Miss Dawne, opening day at the Festival of Lights at Moody Gardens, Thanksgiving day at the zoo with Hayron and his family, another zoo visit with Deena and Carter Hearne, the South Houston Fire Fighters Christmas Parade, SNOW, her very own visit from Santa and Mrs. Clause, visits from friends, went to Kemah to ride the new wheelchair accessible carousel, the Dickinson Festival of Lights and visited Hayron on Christmas day.
We praise God for our many blessings! Happy New Year everyone!

Click here to watch See Holidays 2008

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Saturday, December 20

Today, Courtney got a very special Christmas gift, her very own visit from Santa and Mrs. Clause!
We received a call from Mrs. Clause, announcing that she and Santa himself would be arriving at our house soon, since it was warm outside Candace wanted to get Courtney up so she could see her special visitors arrive. The little princess was waiting out front when she heard sirens coming in our direction, she started smiling and softly giggling  as she recognized the sound of the sirens. Courtney's fire fighter friends have sounded their sirens many times for their little princess, always to her delight! As the big bright red fire engine approached and stopped in front of our house, Santa and Mrs. Clause made their way down the sidewalk to where Courtney was smiling, watching and waiting. Santa knelt down to touch her and look in to her blue eyes, Santa brought gifts also, but Courtney only had eyes for Santa.  Mrs. Clause and all Courtney's fire fighter friends gave her hugs and wished us all a Merry Christmas. As Mrs. Clause walked back toward the fire engine, tears could be seen in her eyes, everyone knows she loves Courtney so much, she loves to see the joy and smile on the little princess' face. Mrs. Clause could be heard saying " this is what Christmas is all about".  What an amazing "Gift of Love" these people gave to Courtney.

As the very special visitors were leaving all the sirens could be heard for blocks, the neighbors and their children were all standing outside watching, Courtney was smiling as she watched the big bright red fire engine leave, Santa was waving to her.

We are so blessed to have the City of South Houston Volunteer Fire Fighters in our lives, we love them all so much, they keep giving of themselves, they are so kind and generous. Thank you guys for your wonderful gift to Courtney, memories we will cherish forever.

Mrs. Clause, your tears of love will not be forgotten and the little princess will be waiting to see you again next year!

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Friday, December 12

I am trying to play catch up with the montages so here is one from November. This one is dedicated to my mom, she's where Courtney gets her red hair from and she gave something else to Courtney that we just found out about, Courtney inherited my mom's love of the KING of ROCK and ROLL also.

On Saturday November 8, we went to the Baytown Special Rodeo. This year was postponed from the usual September date because of Hurricane IKE, which turned out to be a good thing, the day was perfect, not to hot and the crowd was minimal making getting around and having more fun easier for us. The rodeo had everything you could imagine to make everyone happy. There was a clown that blew bubbles for Courtney and Kendall, lots of games for Courtney and Kendall to play, face painting, food, a horse for Kendall to ride and a barrel ride too. We met a group of people with a wheelchair accessible covered wagon, www.horseshoesfromtheheart.org they all were so nice and we all loved being able to ride in the wagon together with Courtney.

The best part of the rodeo was the wonderful ELVIS! His opening number, he serenaded Courtney and gave her a pink scarf! Elvis danced with all the children, Candace was holding Courtney's hands and letting her "dance" to the music too, which thrilled her. I had to call my mom in Alabama during the performance to let her hear Elvis for herself. It's a known fact that my mother has loved Elvis for as long as I can remember. I can remember dancing in our living room with my mom and brother to all the KING'S fast songs, like "Hound dog" and "Blue suede shoes" and so many others. As I got older, fearing teasing from my friends, I gave up listening to ELVIS and started listening to the new music from my era. In my late teens I moved to Texas, where my mom lived and met and married my husband Manuel, in 1973. We got tickets to take my mom to see ELVIS at the Houston Livestock Show and Rodeo. It was so exciting, we were sitting right above the KING'S trailer he was in waiting to come out to perform. I have been back out to the ASTRODOME to the livestock show but never to see a performer at the rodeo again. People laugh when I tell them that the last time I went to the rodeo, I went to see ELVIS!.

As ELVIS left the stage, a DJ took over, we looked at Courtney, she was looking in the direction where ELVIS was and she started to cry wanting him to return. We took her over to meet ELVIS in person, by then she had started to calm down. We all started to dance to the songs the DJ was playing, we did the hokey pokey, YMCA and so many other songs. Courtney's first speech therapist Donna Denny, had one of her kids in his wheelchair and I had Courtney, we were running all around the dancers and having so much fun. Donna is so much fun to be with, I love it when we can get together but she has so much energy I can barely keep up with her. We can't wait until next year to see ELVIS again, Courtney and I have been listening to some ELVIS songs and as I hold Courtney's hands while we "dance", I remember seeing Courtney and Candace "dancing" with ELVIS, he knelt beside Courtney and held her hands then placed the pink scarf around her. Yep, the KING is alive, not only in my mom's memories but also in my memories and now in Courtney's too.

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Wednesday, December 10

Today turned out to be a very special day, it snowed in HOUSTON TEXAS!  It hasn't snowed here in four years, since Christmas day 2004. Candace took Courtney out but it was too cold for her, she did get to see the snow and hold a snow ball though. She giggled when the snow flakes were falling on her face. Kendall had a great time playing out in the snow, even Uncle Brandon got in on the fun and made a snow angel too.

I couldn't help but think about how for the few hours we will have this beautiful white snow. it has covered up all the blue plastic still covering the roofs on many homes damaged from Hurricane IKE, damage that will take years to recover from. I sat this very afternoon in the FEMA office, applying for a loan to help repair our own roof. The entire day I had our good friend from Moody Gardens, David W. on my mind, this gentleman lost his home and all his belongings during the hurricane but instead of focusing on all he lost, this wonderful man is rejoicing in the fact that he has his life. This season is not as grand as the Christmas' of past what with the economy and our own area being devastated by the hurricane, but we are learning from people such as David, the true meaning of the season in not in the gifts or the decorations but the true spirit of Christmas lives and shines bright from our hearts. David, you don't know it but you have inspired me with your kindness and your true joy of life. You are a blessing that I am so thankful for. Merry Christmas to all!

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Sunday, December 7

We were invited by our fire department friends to ride on their float in the parade on Saturday night. There were some of their families on the float on one end and on the end that we were on, there were three elementary school teachers dressed as Santa's. We had a spectacular time, the crowd was wonderful and the parade was full of wonderfully decorated floats. Fireman Joel Ferguson and his wife Karen along with many others did a great job decorating the float we were on. The theme for the parade this year was "Mardi Gras", Courtney loved throwing beads out to the children in the crowd. I found a drummer from the marching band and asked him if he would share his talent with Courtney. She smiled so sweetly as Tony began to play the drums for her, she had her own drummer boy. Afterward we were invited back to the fire station to share food with all the firemen and their families, it was delicious, beef and chicken fajitas with all the trimmings. We are so blessed to have the love and support of our local fire department, they are like family to us. Merry Christmas South Houston!
Click here to see pictures!

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Tuesday December 2

Today we went back to the zoo to meet with some friends we have been wanting to see for a while now. Deena Hearn had to bring her young son, Carter to Hermann Hospital for a sleep study. She travels to many places, even other states for Carter to see different doctors for his rare illness. We met the family at the last Wiggles concert, we sat next to each other in the handicapped section of the front row. We are drawn to other families with children with special needs, we are kindred spirits I think.
The zoo is right across the street from the hospital, so it was convenient for Deena and Carter to meet us there. We had another great time, the weather was sunny and warmed up quite a bit by the time we arrived. Thanks Deena and Carter, we had a wonderful time.

Here is a poem that Deena shared with me, many of you may have read it before, I like to re-read it often.
Click here to see pictures!

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Monday, December 1

Thanksgiving Treasures

Courtney Rosas (age 5) and Hayron Merida (age 4) each have the terminal illness Spinal Muscular Atrophy type 1, there is no treatment or cure. These children were not supposed to live past the age of two. Courtney and Hayron can't swallow, they have to have their secretions suctioned frequently with a suction machine. They can't eat so they have feeding pumps to give them their special formula. Each child is dependent on a ventilator (life support) to breathe for them, twenty four hours a day. These children have never been able to sit, roll over or stand and only have very little movement in their hands and facial expressions. SMA does not affect their cognitive abilities; their minds are as any other child's their age.

This is another amazing story in our precious Courtney's little book of life, a day filled with special memories to treasure in our hearts forever.

Our Thanksgiving day began early, we met Courtney's friend Hayron and his family at the Houston Zoo. The Merida family had often spoke of wanting to take Hayron to the zoo. This was the perfect day to go, Manuel, Hayron's dad, wouldn't have to miss a day of work and  there were not many people out at the zoo. As the gates opened, Brian Hill, the gentleman I had contacted two days before was waiting for us. Brian guided us to where Hayron and Courtney could see and touch birds, and then we met a group of people who let them touch a snake, and a ferret. Hayron's eyes were big with surprise and excitement as his dad held his little hand to touch the animals. Hayron's little sister Gretel and Courtney's little sister Kendall each were a little apprehensive about touching the snake, stretching out one finger to touch it. The zoo keepers handling the animals were so kind, taking time to let each child look and touch. Brian would ask questions about Courtney, Hayron and SMA, he was so sincere, I could tell he really cared about our little angels, wanting them to have a special Thanksgiving day at the zoo.

Afterward, Brian was leaving to go join his own family for Thanksgiving, but before leaving he told me there were others waiting at the children's section of the zoo to meet Courtney and Hayron as well. We were heading to the Children's Petting Zoo when we saw the carousel. I went to meet the carousels operator, Melvin, to inquire about accessibility for Hayron and Courtney. Melvin told me that the carousel was equipped with two seats to accommodate wheelchairs so both our families would be able to ride at the same time. We all rode the carousel three times, each of the little sisters would change animals between stops. Hayron's eyes were big, taking in the view as we rode around and around. Courtney was smiling, riding carousels is her favorite thing to do.
Melvin announced over the intercom that there are two very special people on the carousel today, Courtney and Hayron and how they had made his Thanksgiving day wonderful. I started to cry, and after our rides I thanked Melvin for recognizing our children in such a special way.

Kendall and Gretel were getting hungry and tired so we headed over to get something to eat and drink. Our Thanksgiving meal consisted of warm pretzels, nacho's, hot dogs and cotton candy. We all ate and watched the pigeons at our feet running around trying to get our dropped crumbs. I thought with much Thanksgiving in my heart, how perfect this day was, the weather, dear friends, family and even God's most wonderful creatures to admire. A day to escape the focus of our everyday lives we live, sinks full of syringes to wash, breathing treatments, suctioning, turning, short naps for us instead of a whole nights sleep. All these things we do with joy in our hearts for our precious angels each and every day, to keep them well and happy but this day our focus was on their faces, little windows looking in to heaven, seeing their eyes and little smiles.

We did make it over to the Children's Petting Zoo and had a spectacular time, the children got to see and pet more animals, an alligator, another ferret, we even got to see a porcupine up close. There was a small goat named Domino for the children to touch, Domino made a meal of Gretel's pink hair ribbon, which he snatched from her ponytail. We had so much fun, we were all laughing. For this wonderful day, full of surprises, smiles, joy and kindness, I am truly thankful to the Houston Zoo.

Click here to see Just Us Two at the Zoo

Hayron and his parents came to our country from Cuba, to find the best doctors and treatments for SMA, in hopes of prolonging their little boys life. We met the family through our local MDA when Manuel had called asking to be put in touch with another family with a child with SMA, wanting advice and friendship. Since we had been selected as one of the three families to be featured on the local MDA 2007 Jerry Lewis Labor Day telethon, Dalia Deleon knew that Courtney has SMA also and she emailed me their contact information asking if I would be interested in speaking to the the family. Manuel and I started emailing and calling back and forth for many months before our families met in person on Courtney's fourth birthday. We bonded with the family quickly; we call the children each others best friends. Although Courtney and Hayron can't talk, we know they love each other, it has to be so special to know that you are not the only child with SMA.

You may find out more about Spinal Muscular Atrophy here:  http://www.fsma.org or http://www.smasupport.com

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Friday, October 17

Greetings friends,
We have really been busy lately it seems. We have had two fun outing recently, on Sunday we met Hayron and his parents at Old MacDonald's Farm, it was a little too warm out so we didn't stay long because Courtney starts to desat when she gets too hot. Courtney, Hayron and Kendall each got to pick out a pumpkin, Hayron and Kendall liked the tiny ones and Courtney chose a little bigger one. Courtney got to touch an Emu while I fed it feed from a bag. Hayron was so cute with his eyes wide open as he looked at the horses, cows and goats. Kendall had a great time playing on the slides and she rode the train with Aunt Sarah. It's always good to see the Merida family, we love them all so much.
 
On Tuesday we went to Ellington Field to see all the air planes there. We were invited by our friend Donna Denny, she was taking a group of her children and their parents there on a field trip. Donna was Courtney's speech therapist from the age of 6 mts. to age 2 when she left the ECI program. We don't see Donna often so it's always a nice treat when we get to see her, we even got to meet her husband Tom on this visit, he's really a super nice guy. The large shuttle aircraft was amazing inside, it was so big it looked like a bowling alley. We really appreciate being included on such a fun day with Donna.
 
Courtney's J site is not well, it leaks mostly yellow stomach acid no matter which barrier cream we use, we have tried to cut small pieces of 2x2's to help keep the button off her skin and we move it frequently. Candace told me to call to schedule the surgery we had discussed with the pedi surgeons during the last hospital visit to close up the J site which is directly in the intestines and go back to the G/J combo button in the stomach which worked so well for Courtney for all those years. We want to wait until after Halloween if possible.  
 
We have plans to meet Courtney's speech therapist, our good friend Sue Anne Scruggs on Saturday at a church fall festival. We are very excited, Sue Anne is so much fun to be around. Hope you all have a safe and fun Halloween.

Click here for pictures from Old MacDonald's & Ellington Field

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Monday, October 6

We are home again and so glad to be here. I will be swamped with de-germing and disinfecting everything along with mountains of laundry, mail, bills and restocking the emergency bag for a couple of days. We still have not gotten our roof shingles replaced from the hurricane and there is rain predicted. Lord, I am not complaining, just mentally talking my way through things. We are blessed in so many wonderful ways each and every day and I am truly thankful. I appreciate all of you, your concern, friendship and thoughtfulness is amazing to me.
 
The princess had a late nap and is right now catching up on some of her Noggin programs, she looks so happy. Of course Candace scrubbed Courtney down first thing when we got home, I told her to be careful she might scrub her freckles off. Hugs, Linda

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Sunday, October 5

If the redness does not spread on Courtney's stomach, I think we may go home this afternoon since the surgeons are saying they will do what ever we want. We certainly don't want to have to go home and turn around and come straight back again but the G/J is holding the feeds with the help of the "glue, ILEX" to hold it in. A nurse and Candace made the mystery diagnosis about the white color "bleaching" of Courtney's skin around her stomach as seen on the picture after we saw the x-rays to see if the contrast dye had been passed. It was the dye showing in Courtney's intestines, it matched the x-ray and after Candace gave the first baby lax to help Courtney pass the dye the amount that stayed matched the next x-ray perfectly. We are praying that what ever was causing all the cellulites before the mickey was placed is gone and doesn't return. Brenda, MJ's caregiver was correct about the button, when we have the 2x2's under it, they make the balloon tighter against Courtney making the leak much worse so we are just putting one on the spots where the button touches her skin making her tummy red. Thanks so much to you all for your prayers and your friendship. Hugs, Linda

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Friday, October 3 -12am

Thursday, October 2

Sorry I haven't been able to get on the computer.
Time line
Tuesday: direct admit. 12 noon,We had Courtney on the stretcher and had to walk through a maze of plywood walls in the hospital to try to find a way to the admitting office. Seems the hospital is still in need of much repair from Hurricane Ike damage. Then there is was the admitting process, I'm sure all of you SMA families know about all the unnecessary drama that goes on with trying to do anything with people who " know more than we do". Once we were in our room things went pretty good getting the IV started with only one stick (thanks to NEIL, he is wonderful!), and the chest x-ray taken care of. All went as planned and we were ready for Courtney to go to surgery to have her J site flushed and the G and J bard buttons replaced with mickey buttons.
Wednesday: surgery time 7:30 am, first in surgery. Anesthesia listened for once and as soon as Courtney was brought into recovery we were called to join her. She was in and out and back in her room in about 1 1/2 hrs. A soon as we returned Courtney started having a little temp. which the doctors attributed to side affect of anesthesia. Dr. Jon one of Courtney's great pulmonary team, performed a bedside bronc to check for placement of her trach to see if it is urgent to upsize to a bigger trach. Dr. Jon said placement looks good and we could delay going to ENT for another trip to surgery until spring. Afterward the cardio guy did the EKG, saw her right ventricle is weak and had to work harder to keep up so a Courtney was to go home with a attachments ( a halter) to record her for 24 hours. After all this pulmonary was wanting to discharge Courtney to get her out of the hospital ASAP before she caught something. We had our great ambulance service, Bay Star pick us up at 5 pm to take us home. Once home we noticed Courtney's J site was getting the all too familiar redness and her fever was spiking up more. Candace and I each had sleep last at 6 and 7 am for 1 hour each, we were so  tired and hoped to just get Courtney a bath and clean and disinfect everything and start doing our sleep rotations. But now we had to start repacking, restocking the bags and calling the doctors to prepare to take Courtney back to the hospital. By the time the ambulance arrived Courtney's rectal temp was 103, the highest ever for her, and her heart rate was in the 160's and 170's. As luck would have it we could get no direct admit because it was after hours so we were in the ER for 5 hours haggling with the biomed team about why we not permit Courtney to be taken off her home vent and put on theirs so they could check ours out before going up stairs to the room. With the help of our great ER doctor and nurse who stood up to them we were finally given the sticker on our vent and allowed to go to the new room. By this time it is 5 am and it had been 24 hours since Candace and I had each had that 1 hour of sleep.
Thursday:  At the moment Courtney is all set up in her room, she is not leaking around the J anymore, it is now pouring out requiring several towels and we are awaiting a doctor to come and see all this. Courtney's fever had gone down but about an hour ago it started going up again so we gave her tylenol through the g button. I guess another IV is imminent to prevent dehydration from the formula loss, and who knows what decisions will be made later. I did sleep for 1 hour and then Candace slept for 1 hour. I just now let her sleep for 2 hours and am in hopes of getting 2 hours of sleep also. I will try to get back on to update again later or I will call MJ so she can update for me. I tried to text message MJ but it is way over my old grandma head, I don't know how to punctuate and can't see the letters. Hugs to you all and thanks for all your much needed and appreciated prayers. I don't know if they have email letter at Memorial Hermann Hospital on Fannin in Houston Texas or not but in case someone wants to check the room number is 986. Sorry if none of this makes sense but I am trying to go fast.

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Saturday, September 27

Courtney is scheduled to be admitted into the hospital at noon on Tuesday with plans of cleaning out the G/J site track and putting in the Mickey buttons. The surgeon says that to his knowledge no one has ever tried a Mickey straight into the jejunum before and there is a fear of the balloon causing intestinal blockage. We hope to get Courtney's heart checked out when we are there also because she is having fluctuating heart rates and seems so tired. We also hope to talk to an ENT about upsizing Courtney's trach while admitted. This will be a lot for our angel to go through at one time but if we can get it all taken care of and then the flu shot as we leave she will be all done and ready to start planning our Halloween fun. Thanks in advance for all your good thoughts and prayers, we appreciate you all so much. Hugs, Linda 

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Friday September 19, 2008

Courtney loved going to Kemah so much, each time we would visit she cried when we started to go home. She would ride the wheelchair accessible carousel three times in a row each time we would visit. We had just gone to Kemah the week before, Courtney had lost her two front teeth and that was where she went to spend her tooth fairy money.
http://www.click2houston.com/slideshow/news/17474487/detail.html
Click here to see Princess Courtney's Kemah Memories
 
 
Here is the link to Courtney's Galveston Beach montage. You can see pictures of the shops at Murdochs and the Mermaid Pier which are no longer there due to the destruction of hurricane IKE. We had a wonderful time there letting Courtney pick our her own little sand castle, shells and star fish. She picked out a Galveston Princess t-shirt to add to her collection and even chose a t-shirt for Hayron while there.
see picture # 17 http://www.galveston.com/slideshow_ikeafter/frameset.html

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Wednesday September 10, 2008

Courtney Rosas is a five year-old child diagnosed with a terminal illness called Spinal Muscular Atrophy type 1, there is no treatment or cure. There are many limitations to what Courtney can do, even breathing on her own is impossible, she requires the use of a ventilator twenty-four hours a day along with a pulse ox, feeding pump and a suction machine. This child stays in her hospital bed in her bedroom at home sometimes for weeks at a time, watching television, seeing children in her favorite programs do things that she will never be able to do, running to catch a ball at the park, learning to roller-skate or even speaking the words "I love you" to her mom. Courtney can think and learn just like any other child her age, she can feel pain and sensation and she has normal hearing and vision. Courtney communicates with her eyes by looking at things she chooses such as which video she would like to watch.

With the help of some very special people, Courtney has had many dream come true experiences that most would think were impossible for a critically ill child like Courtney. Here is another amazing story in Courtney's little book of life.
 
On Wednesday afternoon, September 10, 2008 we arrived at the Portofino Harbour Marina in Kemah, Texas to take Courtney on her miracle journey, sailing in Galveston Bay. We were greeted by Captain Dave McCabe, owner of the Blue Marlin III, along with his volunteer crew members, Susan Levy and Manny Alaniz. With careful planning by my daughter Candace, Courtney's mother, and with helpful suggestions from Capt.Dave, we were going to slide a back board under Courtney and transfer her safely from her wheelchair/stroller on the pier onto the sail boat. Capt.Dave had a blue tarp that he and Manny rigged up to protect Courtney from the sun, after that we were on our way. There was Courtney, her little sister Kendall, my youngest daughter Sarah, Candace and me going on this amazing sailing trip into Never Never Land, a place many would have thought impossible for a medically fragile child, only a dream......but not for our little princess, she can and did go sailing.
We saw the Kemah Boardwalk, the many restaurants and the rides and attractions as we passed by, there were many other boats in the bay, also. When we were far out into the open water, the engine was turned off, the sail was opened and the tarp was rolled back so Courtney could see the endless water for as far as the eye could see, the wind was blowing through her hair and she could hear the waves splashing on the side of the beautiful sailboat. Up above Courtney could see sea gulls flying in the wonderful blue sky. At home before our trip, Candace had helped Courtney to make a message in a bottle to throw out into the water, Candace has hopes of someday getting an e-mail or call from some person, from far away saying they have found Courtney's bottle which had been tossed out into the water, with the purple paper rolled up inside with a message and Courtney's hand print on it. As we were out there on the open water, Candace and I looked at each other, knowing what the other was thinking and feeling. We had a sense of urgency to accomplish this miracle for Courtney, never knowing how much time she has left, we want her to be able to do as many things as possible, at least once. We knew that this was a blessing that was meant to be for for our precious little princess. We could feel God's presence on our journey, feeling peace while memorizing the breath taking view. I tried to see things as Courtney does, seeing everything for the first time, through the eyes of an angel. I hope that little Kendall will remember this special day with her older sister, forever.
 
The girls received certificates proving they had indeed gone sailing, and were also given beautiful Heart of Sailing metals to wear around their necks. Kendall loves her metal so much that the day after our sailing trip as we were packing our things to evacuate to San Antonio from Hurricane Ike, she put her metal in her bag along with a few of her other treasures that she didn't want to leave behind.

The Heart of sailing foundation is a program where all over the world, volunteers like Capt.Dave, take children with special needs on their sail boats, giving them an experience of a life time. These people, out of the goodness of their hearts, want to share their love of sailing with these children. Capt.Dave will be more than happy to set a date for your child, patient or student from Houston and surrounding areas, to go sailing. We called and he set the date for the very next week for Courtney. Capt. Dave has a goal set, by the end of the year, he wants to take at least 300 sailing trips with these children, even more if possible, Courtney was number 211.
I personally would like to suggest to all the families with children who have Spinal Muscular Atrophy to please, don't pass up this wonderful opportunity to go sailing with your child and family. There may be a location hear you. If you would like more information or would like to use any of these photographs in the montage sent via e-mail to you for use in advertising please contact me, Linda Rosas 281-795-8272.
http://heartofsailing.org/locations.asp 
Hurricane IKE update: I spoke with Capt. Dave and he reported that his sailboat the Blue Marlin III sustained no damage and that the pier at the marina will be repaired from the hurricane's damage soon, so please call and schedule your childs sailing adventure now, your immediate family members can go along with your child or you may want to discuss taking small groups of students.
 
For the Houston Texas area contact Capt. Dave McCabe
Heart of Sailing Houston- Galveston, Texas
Portofino Harbour Marina, Kemah
1714 Festival Drive
Houston, TX 77062
Phone: (281) 488-1780
Cell: (281) 507-1867
Dave McCabe

Click here to watch the montage of Princess Courtney goes Sailing

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Friday August 22, 2008

On Friday evening August 22, 2008, our princess added the circus to her list of things to do at least once.....this was another of those one of a kind events that belongs right at the top of her list of favorites. God is good, he continues to bless us abundantly.

Thanks to David Wiesner and Mark Wilmoth from Moody Gardens, along with the Berenchtein and Partigul families, owners of the Russian American Kids Circus, for making a dream come true for Courtney and our family. Every child should have the opportunity to go to the circus, at least once, regardless of having a terminal illness or being disabled. Our family was treated like we were the guests of honor, everyone wanted to make sure that we were comfortable. Courtney and Kendall were showered with gifts; all kinds of toys with lights and Candace, Sarah and I were given extra large speciality chocolate bars. From the moment the performance began until the finale, we barely had time to take a breath what with all the action going on. There was never a dull moment, each of the 6 young performers keep our attention with great feats, entertaining us with laughter and excitement. If you have the opportunity to see these young performers in your town, you won't want to miss them for sure! Ms. Olga it was a pleasure and an honor to meet you in person. We hope to see you all again next year!

Click here to watch the montage of the Russian American Kids Circus

http://moodygardenshotel.com/upcoming_events/
http://www.rakidscircus.org/history.php

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The Wiggles Live 2008
 
On Sunday Aug.3, 2008 we loaded up once again for the drive over to the TOYOTA CENTER to let our princess go to her fourth Wiggles concert, that's four years in a row. As we arrived we were greeted by friendly faces who recognized us from previous visits to the center, not only employee's but other families who have attended the Wiggles concerts before. Courtney is quite a celebrity around these parts, people told us " I know her, we saw her on the big screens last year talking to Dorothy or " Anthony introduced us to Courtney two years ago". The employees called us "devoted fans". One mom said that she sat near to us last year and was brought to tears as Courtney went up to the stage.

At the meet and greet it was good to see the Wiggles in person again, they always walk right up to Courtney when they see her. They spend time talking a bit and making sure there are pictures taken. Candace gave them all SMA awareness bracelets last year. We noticed after the show began that they all had taken their bracelets off. This year Candace gave them all Courtney's new "Caring for Courtney" bracelets, Anthony left his on for the entire show this time. You will notice how Murray always goes out of his way to pay attention to Courtney each year. He always comes down off the stage to touch her hand and say something to her. Anthony is the same way with Courtney, always taking time to wave to her and he always announces her name several times during the show over the microphone. This year he walked to the edge of the stage and bowed to her and said for everyone to say hello to Princess Courtney, everyone turned to look at her to see who the princess was.
 
The show this year was so different than the other years. It seemed like a big stage performance with so many things going on there wasn't much time for audience participation, they usually ask for the bones that  
children bring for Wags, and the fruit baskets for Anthony but not this year. They did ask for the roses for Dorothy but she did not get to accept them herself. The dancers gathered them for her. Wags and Dorothy did not have much stage time at all this year. There was a magnificent inflatable castle and the dancers performed more than before. The dancers wore beautiful new costumes and were doing acrobatics all during the show. Anthony got in on this, hanging from one of the ropes. Kendall's favorite part was the Humpty Dumpty act where Jeff was Humpty, she liked the horses in this part especially. (I am including at the bottom of this page, links to other peoples video's they uploaded to you tube. Everyone loved when the Wiggles all came out dressed in their polyester leisure suits, singing "you make me feel like dancing", they even performed as the Beatles once. After the last performance Murray took Courtney's poster and her roses for Dorothy, he walked all over the stage holding her poster that proclaimed "Princesss Courtney loves the Wiggles" up high so everyone could see it.
 
I remember that very first time we went to see the Wiggles in 2005, that was Courtney's first concert, her first big outing. We've come along way since then, I never would have dreamed that Courtney would survive to go to another concert the following year. Living from one day to the next as we do, our past and our present are clear and embedded in our hearts but our future, our tomorrow's are something we dream, wish and pray for. Just one more day Lord...   

Click Here to Watch the Latest "Wiggles Live" Montage
http://www.youtube.com/watch?v=5G3rT_fmti4
http://www.youtube.com/watch?v=xWkhpJJTMTg

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Wednesday July 16, 2008

Today Courtney went to the dentist. The last time that she has been to a dentist was when she was 3 yrs. old. The dentist back then had recommended she return for a visit when she turned 5 yrs. old. Candace and I liked the dentist that Courtney had today,
Dr. Carter examined her, told us she has mild tarter build up (what he would expect with a tube fed child with her condition), nothing to worry about or try to clean and return next year for a check up. He told us we are doing a great job, just to continue what we are doing, not to change a thing. This was one of the fastest appointments we have had, and we had an extra nice treat today, we had the best Bay Star crew ever, to transport Courtney. Alex Harris and Robin Shows are right up there on the top of our list of favorites, right up there with Tino Martinez, best and nicest person ever, and of course Courtney's favorite, her Logan, he's a great guy.
It's not often that we have an appointment where Courtney is not sick, just going in for a check-up; she enjoyed seeing the colorful dancing cow statues at the Clinical Care Building, it is a real nice place.
Even Kendall had a great day, she went to Chuck E. Cheese and to the park with Grandpa and Aunt Sarah. Kendall is excited because on Thursday she will get to see her friend Joseph, she hasn't gotten to see him all summer. Joseph is our Fire Fighter Friend Joel Ferguson's little boy, he's the same age as Kendall. 
Hope you all have a great weekend.  

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Friday July 11, 2008

Some of you may recall how taking Courtney to the beach has been a goal of ours since last year. We had hoped to take Courtney before she was to go to the hospital for the g/j replacement surgery which she had in October. We want Courtney to experience everything that's possible, at least once. Our Fire Fighter friend Joel Ferguson and his family wanted to help us make this dream come true for Courtney but we were not able to get our schedules to work out plus Joel has been very sick himself, even spent some time in the hospital. We had planned on going on Friday with the Ferguson's but they had a death in the family and had to go out of town for the funeral.
We knew we would need some help and were hopeful that someone would be able to meet us at the beach to help with moving the plywood "board walk" we would be using to roll Courtney's wheelchair/stroller out to the waters edge. My husband stayed home because the volunteer electricians said they might be going to work that afternoon on Courtney's room. As it turned out, Candace, Sarah and I had to make this happen for Courtney. Candace is very sore today and I am wearing patches for back pain and my back brace but we feel so blessed to have gotten to do this for Courtney. All day we have been talking to Courtney about the beach and she now knows what it is like to have been to the beach, not just something she knows about from tv.
The pages in Courtney's little book of life are full of miracles, blessings and amazing people and events. God is so good to us, we are blessed abundantly.  
 
One True Media will not let me upload my camera's video's, saying they are not in the right format? So I uploaded 2 clips on YOU TUBE
I hope you won't miss the montage and the YOU TUBE video's, this is such a special accomplishment for us.
 
Click here to watch Courtney's Day at the Beach Montage
 
Click here to watch Video Clip 1                Click here to watch Video Clip 2
 
Hugs, Linda

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Monday July 7, 2008

Hope you all had a great holiday! Ours started off early with us going to Gallery Furniture to pick out Courtney's new tv on Wednesday July 2nd. Courtney got to meet Mack and I took pictures of them together. Mack is quite a collector of memorabilia, his largest collection on display at his store is the Elvis Presley collection, Mack even has one of Elvis' car's, a cape and much more. I remember when  I was a little girl, my mom would put Elvis records on the record player and we would all dance together. My mom has always been a big Elvis fan, we went to the rodeo together to see him back in the seventies. Lovin' Elvis sort of goes along with being an American, like baseball, apple pie and Independence Day Celebrations, even though the Lovin' Elvis tradition stopped with me in our family. My kids knew my mom loved him, the only thing Candace and Sarah remember about Elvis is that Uncle Jessie on Full House, their favorite program on tv, used to impersonate Elvis. One thing for sure, Elvis is alive and well in my memory.
 
We celebrated my oldest daughter Shirley's birthday on Thursday July 3rd. I ordered her favorite cake, strawberry tres leches. You can tell from the picture, how serious her face was as she was deciding where to make the first cut in the cake. It was covered with glazed strawberries, pineapple, peaches and a cherry on top. I had a cute video clip of us singing Happy Birthday to her but once again, One True Media could not upload the clips. I feel so old, to think that I celebrated 29 birthdays already with my first baby girl.
 
On the Fourth of July we went to a church near to our house to watch the fire works display. Courtney loved it, she kept "talking" the whole time. Kendall had a good time sitting on the blanket with Aunt Sarah, eating a snow cone. She would yell out to us telling us which ones she liked the best. The weather was perfect, not too hot and no mosquitoes yet.
 
Saturday July 5th, we went over to Shirley's to let Kendall play in the pool. She had a good time and Courtney loved being there. I would hold her hand and let her throw a small ball out in the water to Candace, Sarah and Kendall, she thought it was so funny. Afterward we went inside to cool off and the girls wanted to change. Kendall was playing with Uncle Darrich and their castle for a little bit before we went home. 
 
Sunday was a day for rest for everyone. In the afternoon, Sarah and I went to the hospital to visit with Hayron and his parents for a little while. It was so good to see them, we love them all so much. Hayron's color looked good he just seems tired. Before his trach surgery he had been trying so hard to breathe on the bipap. He is such a sweet child, I love seeing his face with his big eyes. His parents told me that on Monday, Hayron would be moved from the PICU to a room on the floor. I hope Hayron gets better real soon so he can go home. It was heavenly to kiss his chubby cheeks again.
 
I will update soon on the progress on Courtney's room.

Click Here to watch the latest montage!

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Tuesday June 24, 2008

Princess Courtney's Putt Putt Golf Tournament and Silent Auction
This is the last fundraiser for the month of June that we organized in order to maximize the Mattress Mack offer to match our donations for this month only, for purchases we want to make at Gallery Furniture for things Courtney will need in her new room. 
The weather was bad earlier in the day so we were not expecting to have much success with the event. We were blessed to have Courtney's Speech Therapist, Sue Anne Scruggs and her Occupational Therapist, Dawne Sweet with her husband Larry to take care of everything for us. They signed everyone up for the Putt Putt Tournament as well as running the silent auction. Roy from Putt Putt Fun House was wonderful, helping with our event in every way possible. We were pleasantly surprised to have as many friends as we did to show up. We all had a great time, Courtney loved watching everyone on the bumper boats and also watching the rock climbers. Sue Anne, Courtney's Speech Therapist, my son Brandon and Courtney's friend Logan from Baystar Ambulance all did great at rock climbing.
Thanks to everyone for your help and support.

Click here to watch the Putt-Putt Tournament and Silent Auction Video

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Wednesday June 18, 2008

Amazing, thrilling, unbelievable, awesome, powerful, miraculous, these are just a few of the words I would choose to describe this day. This is another one of those times in Courtney's life when you feel God's presence so strongly. I saw God's face reflected in the eyes of four very special people today. Four people who volunteered to jump out of a plane for our precious princess. Their lives exemplify the true meaning of the word 'HERO'. View a Group Photo by Clicking Here!
Pasadena Police Officer Ben Hickman. We met this young officer for the first time today. The word 'HERO' shows in his life in so many ways. He shines in our community as a local police officer, he shines in our country, he was a military man before he became a police officer, he shines in the lives of his wife and two young children. This man spoke of how his own seven month old son was fighting for his life at his birth, how his only son was given a grim prognosis and how he now is a strong, healthy child, a living testament to God's miracles. He proudly shows photo's stored in his cell phone of his beautiful children. We are so thankful that we got to meet this young officer; thanks to Courtney's new friend Officer Steve Kelly for sponsoring Ben's entire skydiving fee and for asking Ben to skydive for Courtney.  
South Houston Fire Fighter Capt. Clemente Rivas. The word 'Hero' is a perfect fit for this young Fire Fighter. He is just 23 years-old and already giving of himself to help others. He lives and breathes bravery each day. Capt. Rivas was in the first group of Fire Fighters that came out to our house to meet us last August. August is National SMA Awareness month so we decided to invite our local Fire Department and EMS out to meet Courtney to do our part in spreading awareness about the terminal illness Spinal Muscular Atrophy that Courtney has. Our lives have changed since that first meeting with our city Fire Department, we have been blessed by their friendship and love, each and every one of them are our 'heroes', forever in our hearts. I could tell from this very first meeting that this young man has a bit of an edge to him. He has that spark in his personality, meaning he's a bit of a dare devil, a leader, he's the guy who everyone wants to be around. Even on this day he had two of his young Fire Fighter Cadet's with him to watch him skydive for Courtney. The City of South Houston Fire Fighters sponsored Clemente's cost to skydive with donations they had gathered. In fact they were so successful that there was a total of $700.00, which earned Clemente the skydiving video we had promised to the skydiver with the most donations. Police Officer Ben Hickman stepped up and generously offered to pay for the cost of the video so we wouldn't have to. Once again Courtney's Fire Fighter friends came through for her, supporting her, always giving their best for her, expecting nothing in return, just because that's what heroes do.
Photographer Extraordinaire, Tania Elizalde. You may recognize her name from previous updates since Courtney's 5th Miracle Birthday Celebration. Tania, her parents, sisters, brothers and friends all operate the Pasadena Ballroom and Photomundo Portrait Studio. These wonderful people donated the use of their ballroom, catering for 200 people, decorations, DJ, photography, videography, servers and much more. We could never repay these people for all they have done for Courtney and our family. Since we met Tania we have started a wonderful friendship with her, each one of us bonding with her in a special way. She is a remarkable young woman who just turned 22 years old, but because of her life experiences and dedication to her parents and family she seems much older. I am not sure if she was born a 'Hero' or if things that happened along the way in her life made her evolve into being a 'Hero', much like a caterpillar in the beginning and then transforming into this beautiful butterfly that we now know as Tania. We love her dearly, her spirit, her heart and soul, she is a 'Hero' from the inside out. She not only helps people in our community but helps people here from other countries. She gives of herself so freely, I honestly don't know when she has time to sleep because she is so extremely busy. Tania was the first participant willing to jump out of a plane for Courtney.
Ruth Johnson, College Student. For those of you who have watched my montages, you will know Ruthie from the Easter Memories Montage. We met her when Courtney was in the hospital for her 3rd birthday and Easter, the time the surgeon punctured Courtney's lung attempting to start a central line. I had called the mall near our house to ask the ' Easter Bunny' there if she could come visit Courtney at the hospital for Easter. Thank goodness Ruthie was there helping out at our mall that day and she answered my call, she made arrangements to borrow the bunny suit and came out to visit Courtney at the hospital on Easter morning and while she was there she went around to visit the other children's rooms as well. Ruthie must have been 18 years old at the time. Ruthie borrowed the suit for the last two years as well, delighting Courtney with her very own Easter morning bunny. I still can't believe how compassionate this young lady is, willing to give of herself at such a young age, getting up early in the morning after working late the night before and driving such a long way to bring joy to a little girl with a terminal illness year after year. Ruthie volunteered to help with Courtney's 5th Miracle Birthday Celebration as well as donating to the raffle. She drove for an hour and forty five minutes to skydive for Courtney. Ruthie is and always will be part of our lives as a special friend and a 'Hero', she answered my call to help Courtney without a second thought three years ago and she continues to support Courtney to this very day.

To Watch the 3 Skydiving Videos Click Here

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Friday, June 14, 2008

Greetings friends.
This is my fourth attempt to write Courtney's ballet recital update. As most of you know, I'm just like any other grandma, I LOVE bragging about my granddaughter's Courtney and Kendall. My montages and pictures are a way for me to share with all of you our precious memories we have with our special angel Courtney, each picture reflecting the moments that we cherish with her.  When I include updates describing the events, sometimes I have to reach deeper into my memories, stirring all the emotions and reliving all the times of the past. While attempting to write this update I have cried many tears, both tears of joy and sadness as I recall Candace being pregnant with my first grandchild. I remember when Candace was pregnant with Courtney how she chose the ballerina and ballerina bears theme to decorate their bedroom. Candace and I spent hours during her last months of her pregnancy stenciling tiny pink stars around the room and shopping for ballet themed items to hang in the room. I recall how excited we both were chatting about the arrival of the baby and we shared with each other our dreams we each had for Courtney. Like every mother expecting a girl, Candace had the dream of seeing Courtney on stage in her first ballet recital, dressed in a pink leotard and pink dance slippers. We never dreamed that her baby girl would never walk much less dance on a stage. 
Most of you have read Courtney's story on her website. I am attaching a few photos to go along with the update and montage. There is a photo of the nurse getting Courtney's footprints right after delivery, and one of Candace and Courtney looking into each other's eyes for the first time.
After Courtney's diagnosis right before she turned five months old, (when we were told not to expect her to live to celebrate her first birthday) we wanted to make sure that she got to have as many birthdays as possible so we started having birthday parties on the thirteenth of every month for her. Courtney's five month birthday party was at home with a large number of family friends. Her six month birthday party was held at a pizza place near to our home. I remember that I had called and made the reservation for the party package and when we arrived with a cake topped with a tiny ballerina, gifts and decorations, our party hostess remarked that Courtney sure was small to be celebrating her first birthday. This party goes along with the montage because Candace had chosen once again the ballerina theme for this special celebration in which we were celebrating six months of life for Courtney, not knowing if she would survive to celebrate the seventh month.
About one week before Courtney's 5th Miracle Birthday Celebration, I called The Rachal Dance Studio near to our home to ask if some of the ballerina's would perform for Courtney at her party. The children did a wonderful job performing, becoming a treasured memory in our hearts forever. The dance studio never wanted any public recognition for their participation, only wanting their performance to be a gift from them to Courtney and our family. The studio even asked Courtney to be in their dance recital, giving us the opportunity to have that dream come true of seeing Courtney on stage in her first ballet recital. You all know how we believe in miracles, the Rachal Dance Studio made another one of Courtney's Miracles Happen. Special thanks to the children who gave of themselves, their time and talent to dance for Courtney; to Beth Dimmick, we thank you for having the compassion to want to give Courtney and our family this wonderful memory and for the wonderful speech and for Courtney's trophy.
http://www.youtube.com/watch?v=G6JUYVYbdeY
I will never forget how Candace cried when you called Courtney's name out to receive her trophy; thanks to Kathy Pratt for befriending me and helping me with all the recital plans and calming our last minute recital jitters and to all the parents and grandparents of the children, we thank you for sharing this special event with us. I know because of Courtney the evenings performance was longer than normal but you all were so patient and because of your kindness we felt so welcomed. You allowed the spot light to shine on our little princess. Yes little princess, you are a beautiful ballerina girl, we love you Courtney! 

Click Here For the Ballet Montage!

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Thursday, May 29, 2008

Since I last updated, Courtney was in the hospital, my mom came to visit, we celebrated (in a small way) Tania's birthday and Courtney has had two more amazing visits from pianist Heath Vercher for private music therapy. I hate to be whiney but my back has been bothering me terribly so I haven't been good for anything much lately.
 
On to news about Courtney's new room. While we were in the hospital my husband Manuel and Courtney's Occupational Therapist Dawne Sweet met with Bruce Monroe from Mobility Headquarters. I think they have everything worked out for the lift. The past two week-ends have been really hard on the guys with the heat and the very hard job of replacing almost all the overhead joists and rafters. The plan was to replace two of the rafters in the beginning then it was discovered that almost all of them would have to be replaced. That second week-end Rod Sutton worked with Manuel both days and Justin worked several hours also. Manuel's good friend Barry Boggs joined in on the hard work that Sunday.
This past weekend was the third week-end since the project began, and it was Manuel, Barry and Rod working for both Saturday and Sunday.
 
*Next weekend the framing for the walls will begin. We are in desperate need of a plumber now to start the work for the bathroom plumbing.  We had hopes that Daniel Olivo from the South Houston Fire Dept. would be able to get someone for us but I have not heard back from him. I sure wish we had someone to help design the bathroom. I am so afraid we will make a mistake and not do what is best for Courtney so she can get in and out of the bathroom without any problems.
*We have one month that Gallery Furniture will match our donations we raise for purchases we need for Courtney's room. We need to get busy to maximize this wonderful opportunity that Mattress Mack has offered to us. Thanks to our new friend, Raymond Ramirez from Fox News for setting up the benefit for Mack to match the donations for Courtney.  Sue Ann, Courtney's speech therapist has offered to sell things for Courtney at her garage sale in about two weeks down in Seabrook. If any of you have some nice things that you would like to donate for the garage sale you may drop them off at our house. 
*I have contacted the skating rink near our home and am waiting to hear back from the owner about a fund raiser there. I am hoping the owner will donate an evening during the week for an event and all the proceeds will go to the Gallery Furniture benefit project.
*I also am waiting for the owner of the Putt Putt in Webster to get back with me about a golf tournament.
*One of my idea's for a unique fundraiser, which I am calling around about is for a skydive business to donate several skydives, then I could get some key people to dive for donations for Courtney. I would need to ask the people we know with the best chances of earning more from sponsors. I think one person from the school district, one from the Fire Dept. and at least three others. I do believe in miracles so lets see if this will turn out to be another one for Courtney. 
*Please contact me via e-mail if you have any suggestions or idea's. We all have the same goal, to do what is best for Courtney, to benefit her health, happiness and life in some way. Thank you all so much for "Caring for Courtney".

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Friday, May 16, 2008

   The doctor just came in and told us that we will for sure get to go home tomorrow, that Courtney's electrolytes look good!
Here is a poem that our friend from the ballroom wrote for Courtney. Tania is a remarkable young woman with the biggest heart and she is only 21 years old. When she speaks, her words are so poetic and kind. I want to hug her and protect her from being hurt by the world, she is so pure of spirit and soul, like the first snow with no footprints in it yet. We truly are blessed to have her in our lives.

 

Hmmm, yes we are going to be here one more day it seems. The doctor said since the fever Courtney had that she is a little dry so they want her to stay for one more day of IV fluids. She will be switched to clinda by g tube to go home on. It's been nice catching up with some of our old friends at the hospital, but it is always better and safer for Courtney to be home. Keep our little princess in your prayers that while here she won't pick up something else. Praise God, her chest x-rays and sounds are wonderful. Thanks for all your e-mails, phone calls and messages, we value and appreciate your concern and friendship. Keep those powerful prayers coming.

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Thursday, May 15, 2008

Courtney is admitted and on IV antibiotics for the infection at the G/J. Maybe with the new button and WITHOUT the suture that was left in she will heal now. Courtney had been having high heart rates and fever, up to 102.4. She is sleeping now. If all goes well and the blood work shows improvement she will go home tomorrow. By the way as Courtney was wheeled into the ER, guess who was waiting at the door for us? Our very own Antonio Bandara's. I did get a new pic of him with the very sick princess. Maybe someday she will feel better when she sees him for a better picture. We are always so used to all smiles in Courtney's pictures. Thanks so much for all the prayers. I will try to get back on and read some of the responses later tonight if I get a chance.
Linda 

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Wednesday, May 14, 2008

Today's office visit for the G/J replacement was horrible for Courtney. The hospital  
surgeons back in October had sewn the button in and left the suture inside. Today's doctor did not know it was there and was pulling and yanking until he finally forcefully got the button out with so much bleeding. Courtney was in so much pain with only the cream applied to the site for pain. After the bard button was out the nurse said "Oh so I see now what the problem was with all the leakage and all". This same nurse and doctor after lets see how many visits since March maybe 4 or 5, always said the infection and leakage was "NORMAL". Way back in March when we took Courtney to the ER for the first case of cellulitus, the new resident (Antonio Bandaras) was right in his theory of what was causing all the trouble for our princess. He told us that there must be a suture there that kept rubbing and sticking her causing the problems and that she would need to go back to surgery to have it removed. Now Courtney has a very high heart rate and elevated temp. These poor children have to fight so hard just to live, then they suffer because of the careless mistakes of others who don't care and won't admit to their wrong doing. so sad.

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Friday, May 1, 2008

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Wednesday, April 30, 2008

Princess Courtney on TV!
Click Here to Watch

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Saturday, April 12, 2008

April 11th, one more birthday for me. This was my 54th birthday, I always think of my mother on my birthday and for the past 5 years I have always included Courtney in my thoughts as well. I don't remember very many of my birthdays, I do recall one when I was maybe 4 years old, my Aunt Patricia and Aunt Faye gave me a little umbrella and a pair of plastic high heeled shoes. I still can feel the sunshine on me as I walked up and down the sidewalk all day long with my high heel's on while holding my pretty umbrella over my head. I remember when I was maybe 10, my dad gave me $20.00 to spend any way that I wanted to. I had him drive me to the local Dairy Queen and bought just about everything on their menu and tried to eat it all at once. I sure did get sick and to this day every time I see a milk shake I get sick to my stomach. Now days my birthday thoughts are of missing my mother who lives in Alabama and her sister, my Aunt Faye. I was always close to my Aunt Faye, she wasn't much older than me. Even thought we don't stay in touch often it is so comforting to know that we love each other with all our hearts and distance nor time apart from each other will ever change that. And my mom, what can I say? She's the one, regardless of what obstacles in life we have been through, that gave birth to me. I love her more as each year passes.
Five years ago when my daughter Candace was pregnant with my first granddaughter, I was thrilled to find out her due date was around my birthday. On my birthday I took Candace to the park and made her walk and walk. Afterward I let Candace rest a little and then took her to Wal-Mart and made here walk up and down all the isles trying to get Courtney to be born on my birthday. Little Courtney stayed right where she was, not being born until 2 days later on Sunday,
April 13th. I got the best birthday present ever, just a little late is all.
Sunday will be a great day, one I  am looking forward to with such joy! I will get to be with my precious granddaughter as she celebrates her 5th birthday. A birthday that we thought she would never have, there will be tears of joy and happiness as we share this wonderful day with her. Happy Birthday Courtney, you are my precious angel, my glorious gift from God. It is such a blessing to be your grandma!
 
Please pray for little Hayron, his parents took him to the emergency room, Hayron has a broken leg. They are home and Hayron's dad told me that Hayron has a leg immobilizer and that Hayron is to return to the doctor on Wednesday after the swelling goes down for a cast. Manuel believes the leg got injured when they were moving Hayron after giving him his bath. The type 1 SMA children are so fragile. Manuel told me that they are still planning on coming to Courtney's birthday celebration. They are very excited because Tania from Photomundo will be taking their family picture on Sunday. I remember it was one year ago when we met Hayron and his family for the first time when they came to Courtney's birthday party.  We are excited about Courtney and her best friend Hayron dancing together.

Check Out Pictures from 5 years ago!

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Wednesday, April 9, 2008

The good news is that this Doctor that Courtney saw today says that Courtney only needs a new bard g/j port , the g looks good at this time. His told us he will plan on doing the change in his office next week and that it will be very painful when he pulls it out and pushes the other one in Courtney's stomach but that it will be less risky than going to surgery for her. The Doctor put one that is way to big and loose in when he performed the surgery back in October because he said it was the only one he had at the time. He would not say anything about Courtney's pain in her stomach, her inability to sit up in her bed (even just the little bit that she can tolerate) or her high heart rate. Candace said to him so what do we do just wait for her fever to return?
  PRAYER. Please continue to pray for our princess that she will remain well and happy for her Miracle Celebration on Sunday.
 Hope to see you all there! 
Thank you all so much for your support! The raffle ticket sales are getting better, we hope to reach our goal so we can start Courtney's room and bathroom.  
 
A good friend of mine had this posted for Courtney, thanks Geniel!
 
http://blogs.chron.com/goodmombadmom/2008/04/make_a_difference.html

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Sunday, April 6, 2008

I'm worried! We are praying for Courtney. This is the third antibiotic now for the cellulites at her g/j site. That's the tube where she is fed. The surgeon said the next thing is to go back to surgery to see what is wrong. The antibiotic finishes on the 7th and there is no improvement much now. Lets hope and pray Courtney will make it to enjoy her party before the fever comes back from the infection.
 
I'm amazed! Candace, Sarah, Courtney and I were out doing some errands today. We had to take Courtney with us to a seamstress. Candace had a last minute idea and wanted to add more to the skirt that Irma Garza had made for Courtney's wheelchair/stroller. While we were out shopping a lady came over to us and was commenting on Courtney's pretty red hair. The lady said she believes that God sends these children to special people. I said Courtney is an angel and she agreed. She realized that this was the same little girl that she had read about on the front page of our local newspaper last Sunday. We talked a little more before we left to go to the van. As I was putting the ramp up the lady approached us and wanted to give Courtney something for her birthday. She told me her name is Lois and that she would be praying for us then said thank you for taking such good care of Courtney. She handed me a folded up bill and walked away. I handed the money to Candace, it was a twenty dollar bill!
 
I'm honored! Last week a young man from the ambulance service that we use to transport Courtney to the hospital and doctor's appts. emailed me. He is doing a research essay for his  Biology class about genetic disorders, and he chose SMA as his topic. He wants to use some of the info and pictures from Courtney's site. I told him we would be honored and welcome the opportunity to spread awareness about SMA. Who knows, someone from his class may be the person who finds the cure for SMA.
 
I'm nervous! I am so worried about Courtney's Miracle celebration, there are so many things to do and so little time and few people to do it all. This is such a blessing for us to be able to celebrate our precious Courtney's birthday with so many people. Tania, Dawne and Stephanie you all are amazing!
 
I'm humbled! I am so humbled when I think of how much God does for us! God is constant in his love and keeps sending his special people to us to give us inspiration, strength and hope. This has been a really emotional week, with the invitation for Courtney to be in the Rachal Dance Studio Recital, Courtney's cellulites, and the rush of memories from the last five years as Courtney's birthday approaches. God is good!

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Thursday, April 3, 2008

When expectant mothers are told that they are going to have a little girl, dreams of ballerina's and pink tutu's come to mind. When Courtney was six months old her mother was told that Courtney would not only never walk or dance but that she would die before the age of two and most likely would never live to celebrate her first birthday because of the severity of the disease Spinal Muscular Atrophy type 1 that Courtney has. Courtney has more that doubled the grim prognosis that the doctors gave for her life, she will be celebrating her 5th Miracle Birthday on April 13th, 2008. The Rachal Dance Studio has invited Courtney to be in a dance recital! Her mother and I both had tears in our eyes as we remembered the dream we had long ago given up on for Courtney. I can not wait to update you all with pictures of Courtney with the little ballerina's! God is so amazing! He lives and breathes life into us, never letting us give up, giving us hope and dreams of tomorrow's! Thanks to Beth and Kathy from the Rachal Dance Studio for giving Courtney such a wonderful opportunity to do what all five year old little girls dream of doing.

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Sunday, March 23, 2008

Courtney and Kendall were up and dressed early and waiting in the living room for the Easter Bunny. We were talking and Kendall turned around to look out the bay window and pointed and said look! There was the 6 ft. tall Easter Bunny in our front yard hiding eggs! Kendall held her finger to her lips telling us to shhhh..., I think she thought if we made any noise the Bunny might run away or she thought we were not supposed to be watching. When the bunny finished she came inside and got the girls to go outside to hunt for the eggs. Afterward the Bunny stayed for hugs and pictures, what a treasured memory this will always be. How many kids get to look out the window and see the Easter Bunny (for real) at their home on Easter morning?
This was the 3rd Easter in a row that Courtney has been blessed to have her own Easter Bunny on Easter morning! The story began when Courtney was in the hospital (for three weeks) for her 3rd birthday and Easter, the time the surgeon punctured her lung trying to start a central line. A day or two before Easter, I (always believing in miracles) called a mall near to where we live to talk to the Easter Bunny. There, helping out that day was Ruth Johnson, she was the Easter Bunny "helper" from way on the other side of Houston, she answered my call. I told her about our precious princess, about her illness and being in the hospital for Easter and she happily volunteered to bring the Easter Bunny out to the hospital to visit Courtney on Easter morning. The Bunny even went to visit the other sick children on the floor, it was great seeing them so surprised and the wonderful smiles on their little faces. After the Easter Bunny left, Ruthie (she changed out of the costume) stayed for a long visit with Courtney. Ruthie once again brought the Easter Bunny to visit Courtney last year at our home, again staying to visit afterward with our family, building a very special friendship. Ruthie is one of our hero's, she was only 19 years old when we first met. She is busy with school and work but ALWAYS makes time to bring the Easter Bunny to visit Courtney even though she has to travel for 45 minutes. How amazing it is to see a person so young commit to doing something so special for a child. As I always say, God is so good to us, he sends such wonderful people in to our lives. We are so blessed!

Click to view Easter Memories

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Saturday, March 8, 2008

Finally, we got to meet Dan Zanes! We had our tickets for seven months in advance. First thing when we arrived we went straight up for the private reception " Pajama Party and Breadfast" with Dan Zanes in person. As soon as he walks in the room it was like he was just a regular guy, no one seemed that excited, maybe it was because all the other guests were the theatre big wigs; big company donor families. The Wortham/Cullen Theatre is where all the big opera performances are held, the center of the Theatre District.
Dan is different for sure, he is a musician, plain, pure. He is all about folk music, songs that have been almost forgotten. Fun to see the music enjoyed by all the generations, the grandparents, parents and the kids of all ages.
Courtney cried after some of the songs, she didn't want the fun to stop and of course as we were leaving she started to cry. I bought Courtney a Dan Zanes t-shirt to add to her collection and a matching one for Kendall. We all got to meet Colin Brooks who plays the drums and the pretty Sonia De Los Santos, she sings and plays the guitar. Her parents were really nice and enjoyed meeting Courtney.
It wasn't as exciting as seeing Courtney's friends The Wiggles but fun in a relaxing and laid back sorta way.

See Dan Zanes in Concert

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Thursday, March 6, 2008

Our little Princess wasn't feeling well on Tuesday, we knew something was starting. By Tuesday night Courtney had a low grade fever, we called Pulmonary and was planning on doing the usual trachial aspirate to the lab and see the Doctor on the next clinic day (Thursday) since we had already started Courtney on Tobra. Well when Dawne (OT) came on Wednesday morning, Candace was telling her how Courtney makes faces like her stomach was hurting when she would touch it. Dawne and Candace took a peek under the 2X2's (first time to look since bedtime the night before) and sure enough, Courtney's J port area was inflamed, swollen and oozing. I called Pulmo back, they told me we should go ahead and take Courtney to the ER, even though they had hoped we could stay away from there with all the illnesses that are going around. We got a new doctor, his first day as a matter of fact. He was nice enough, I can't remember his real name, Candace gave him a new name, Antonio Bandaras. All the nurses agreed. The chest x-ray was one of the best they have ever seen  for Courtney, all the blood work came back ok meaning the infection was localized, it is cellulitis. Dr. Antonio wanted us to stay over night but we knew that Pulmonary wouldn't want Courtney to stay there so as soon as Dr. Antonio spoke with Pulmonary we were promptly discharged with an antibiotic called in to our pharmacy. Courtney was to report to the pulmo clinic on Thursday morning.
 Candace and I are exhausted and there is no relief coming anytime soon, there are plans for almost everyday. We wish we had more time, we really miss seeing our Fire fighter friends and don't get to see them very much at all. Candace, Sarah and Kendall are practicing the Cha Cha Slide for Courtney's birthday, Courtney watches them and giggles. I can't wait to see Courtney in her pretty dress and to watch Candace spin her around the dance floor, I know she will be all giggles. Thank you Lord for each and every precious moment we have with Courtney and thank you also for all the special people you send in to our lives.

Check out my ER Doctor ... isn't he gorgeous?!?!

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Friday, February 8, 2008

Princess Courtney plays hookie from school!

Yes you read it right, Princess Courtney played hookie from school today. Can you imagine that? She's homebound schooled, in pre-k and already playing hookie! All I can say is it was a beautiful day, she felt well so what kid wouldn't rather go on a wildlife adventure with animals so close you could kiss them than lay in your hospital bed and review ABC's with Mrs. George? This is the best place we have ever been to, so much better than the zoo. Courtney could see all the animals unlike at the zoo with the fences blocking her view. Little sister Kendall loved the park too, she really loved the pony, calling it her baby. Madagascar is Kendall's favorite movie so she loved the lemur, giraffe and zebra's. We could not believe how tame the animals were, the most aggressive animal was the ostrich I believe. My heart and soul are full of beautiful memories with my precious Courtney, this day belongs near to the top for sure. We can't wait to go back again, wish we could afford the season tickets.

Click here to watch me playing hookie.

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Wednesday, February 6, 2008

Greetings Friends, I hope you all have been spared from all the illness going around. This is an update about our trip to Moody Gardens. on 2/1/08 with Hayron and his family including a montage. Hope you enjoy seeing it, it was a blessed day for us....it was.......
 
Heaven Sent
We have been trying to get, Courtney's friend, Hayron's family to take him out with us. I was pleased to say the least when Manuel, (Hayron's dad) called on Thursday to say that he would be off work on Friday and they would be able to go with us to Moody Gardens.
 As soon as I got off the phone with Manuel, I called David Wiesner, he's the Attraction Sales Manager at Moody Gardens to see if he could get us in early before the crowds would arrive. David remembered Courtney from last year when he arranged for us to get in early. He is one of those people that you meet only every so often, he is sincere and just so kind. David was very patient with us allowing us to take as long as we needed to get from one place to another. He told us there would be a group of school children arriving soon so we didn't stay too long at the Aquarium. Hayron is so cute, I love looking at how big his eyes get when he looks at things that interest him. Hayron and Courtney would have loved to stay there all day. It was wonderful to see Hayron's parents, 
Manuel and Maciel, so excited. Like so many of us with children with SMA type 1, we don't get out, often not leaving the house for weeks because of illness or for fear of exposing our angels to even a cold which could take their lives. All during the morning Manuel and Maci were talking about how beautiful this or that was and how they have these in their country, Cuba. This family came to the United States when Hayron was a baby in search of the best doctor's for their little son, hoping to find a treatment to prolong his life.
 As we entered the Rain Forrest, their mood changed, full of mixed emotions. They each would point at the plants saying "we call this by this name in our country" or this plant has the most beautiful flowers, first with smiles on their faces, then silence, they would look away. I wanted to cry for them for their pain and yearning for their country. Manuel said in his country he had many of the same plants in his garden. Manuel would bend down over his son's wheelchair and softly speak in their own Cuban language about the birds or flowers. Being in the Rain Forrest seemed almost like they were seeing old friends, happy and yet sad because they would be leaving the friend again to go back to their daily lives of around the clock care of their beloved son. God, I pray for a cure for Spinal Muscular Atrophy, so it will not take any more of our children's lives. I just wish they could all run and play, sing Barney songs and call their mommies for a drink of water in the middle of the night. Our angels are so precious, they tell us they love us with their eyes, they sing their songs with their own little sounds. They may only be able to move one finger, but we are just as proud of that tiny movement as if they had rode a bike.
As we were leaving Manuel told me "Linda, I want for us to return here again, yes we must". We love it here!
 
Thank you Lord for this day, this was truly a "Heaven Sent" day! Thank you David Wiesner and Moody Gardens, we hope to take Hayron and Courtney there for many more visits.

Click here to watch: Princess Courtney & Hayron/Heaven Sent/Moody Gardens

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Monday, January 28, 2008

Greetings friends! I do apologize about taking so long to update. January has been spent mostly inside due the weather and all the sick people out and about. Courtney gets up in her stroller and goes to the living room and outside some when the weather permits. It is good that we were so busy in December because we don’t feel bad about staying in now.
January Happenings:
*Our wonderful friend at MDA, Annie Clary and her mother-in-law made about 25 new spit cloths for Courtney. Our friend Dawn Daw’s came up with the most creative name for them, “Designer Droolies”. God is so good to us, always sending the most caring people in to our lives. Thank you both for sharing your time and talent. We love showing them off when we go out, the droolies are a perfect addition to Courtney’s Princess persona.
* I don’t know if all of you remember me writing about Courtney’s OT, Dawne Sweet a while back. I was requesting prayers for her husband who had to have surgery for cancer. Well, I don’t think I mentioned it but on the very evening before her husband was to have surgery, Dawne prepared a wonderful Italian meal, with all the trimming for us. It was right after we got home from Courtney’s last hospital stay in October. Dawne and her husband Larry (who is doing well) adapted toys for Courtney for Christmas. Larry is quite the artist; he gave Courtney two story books and made drawings of the characters in each book. The drawings are the perfect size so Courtney can hold each in her hand while I read the stories to her. I could just go on and on about Dawne, she has been a God send to us in so many ways. We just love her so much and appreciate all she does for all of us.
January 3: We met one of Courtney’s Fire Fighter hero’s, Joel Ferguson, his wife Karen and son Joseph for a play day at Chuckie Cheese. The pizza was cold, the service was bad but the kids had a great time. We always love spending time with this family, they are amazing friends, and we are blessed to have them in our lives.
January 5: My son’s (Courtney’s Uncle Brandon) car was totaled by a drunk driver. Praise God that he was not in the car but inside his girlfriend Estella’s parent’s house at the time.
January 11: I went to pickup “Courtney’s Miracle” dress at David’s bridal. It is so pretty; we can’t wait to see her in it.
January 24: We took Courtney out to visit the Pasadena Ballroom. It is so pretty, Candace loves it and we are praying so hard that we can get this location some how for “Courtney’s Miracle”. Afterward we ran by Michael’s craft store to pick up a few things. It was late, a week night and not the best of weather so not many people were in the store at all. Candace had to get some new t-shirts to make my youngest daughter Sarah and her boyfriend Taylor Doodlebop t-shirts for the concert we all will be going to on Feb.3. We saw the Doodlebops last year and had a great time but they still will not have a meet and greet.
Please, include Courtney’s SMA friends in your prayers. They have been hit hard this year with RSV, with many being hospitalized for long periods of time.
Thanks to our wonderful friend Fire Chief Garcia, for giving up his Sunday afternoon
(his only day off ) to go with me to talk to the owner of the Pasadena Ballroom. Please join us in prayer that the owner will have a kind heart and he will allow us to have Courtney’s Miracle Celebration there with the fees waived. The owner is supposed to get back to me in 2 or 3 days.

On a final note, I want to thank all of you for your responses to Courtney’s pictures and montages that I share. I just can’t help myself, I love bragging and showing off photo’s of my family.
Like the song says, how sweet it is to be love by YOU; we appreciate all of you so much!
Hugs, Linda

Click here to watch Courtney's January 2008 Update Video

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Saturday, December 1, 2007

My older daughter Shirley, middle daughter Candace (Courtney and Kendall's Mommy), my youngest daughter Sarah and her boyfriend Taylor, my granddaughter Courtney and I were getting excited about the parade. I didn't know what to expect, I couldn't recall ever being to a parade before, I have always watched them on

television. Courtney was the Grand Marshall meaning that her float was the leading float, the first, even before the Mayor of the city.
 The float we were on was simply decorated, no special theme. This was a very special float not like the others in the parade at all. This float would not win any awards for its beautiful lights or outstanding decorations. There was a banner on the front of the truck that pulled the float and another on the back of the trailer that proclaimed ' Cure SMA'. This float represented one thing only, love. Love from a bunch of volunteer fire fighters for a little red headed girl with a terminal illness.
 
 As I looked up at the star on Courtney's float that fire fighter Joel Ferguson had put up the night before I recalled his comment to me as he was testing the lights on it while Sarah and I were there helping decorate the float. He said 'Courtney has to have a star because she is our little star'. Courtney had her very own star, on her very own float leading the parade, Courtney's parade, that the City of South Houston's Volunteer Fire Department had made possible for her to be in.
 
The parade theme was Super Hero's this year. Although we didn't see too many super heroes in costume's or floats decorated in the super hero theme there were plenty of super hero's all around. We saw our super hero Fire Dept. Captain Daniel Olivo racing back and forth in his little golf cart taking time to stop and check in on us each time he passed by. There was another of our super hero's Joel Ferguson and his lovely wife Karen, each of them also rushing around but still taking time to check up on us. I could not even imagine what all they had to do to insure that everything in the parade would go smoothly. Another of  our super hero's Fire Chief Garcia, he stopped by several times as well to keep us updated on the parade's progress and to see if we needed anything. There were Fire Fighters from near by Pasadena, Police Officers, even Vietnam Vets. all surrounding us. 
 
 For Courtney's safety we all agreed that there should not be any candy thrown from her float because of the crowd rushing too close to her.  The streets were lined with people looking at Courtney's float, the children holding out their bags anticipating candy to be thrown. We all were waving at the crowd and I called out to them wishing them a 'Merry Christmas'. One man shouted 'Cure SMA' as he thrust his arm high in the air with his hand held in a tight fist. Many applauded as we passed. Our little princess, our 'Star' of the night, watched all the people as we passed them. We pointed out the people that were holding their pet dogs for her to look at. She loved seeing all the children waving at her and clapping their little hands to the tune of the Christmas carols that were blaring from our float. Candace and I would take turns holding Courtney's little hand up to wave at the crowd. After we got to the parking lot at the end of the parade route we got Courtney down off the float then went to stand in front of the stage to hear who the winners of the parade would be but Candace mostly just wanted for Courtney to see Santa coming to town. He arrived in a extra long limo. at the end of the parade. Right afterward Courtney fell fast asleep, she had such a busy evening.
 
 All the Fire Fighters were on the stage with Capt. Daniel Olivo as he started to announce the parade winners then give the winners their trophies but first he introduced the Grand Marshall, Princess Courtney Rosas and our family to the crowd. I could not believer this great blessing taking place for Courtney. After Daniel had given all the awards he stopped speaking for a moment, cleared his throat and began talking again saying 'and now we have a special award for our Grand Marshall, Courtney Rosas!” I started crying as Candace approached the stage to receive the plaque for Courtney. She hugged Daniel and returned to where our family was standing with a huge smile on her face. All I could think of was how precious Courtney is to me and how these wonderful people have gone out of their way to include her in their lives.

Our small town is mostly populated by Hispanics and not a wealthy city at all. We don't have a beautiful golf coarse, country club or blocks and blocks of new homes in large subdivisions. We are proud of our little city, just as it is. This parade brings the whole community together. The Fire Department consists of all volunteers, not the big city calendar model type’s at all. All the time and effort it takes to have this parade is done with volunteer hours. These people have regular jobs and families but take time to do this out of the goodness of their hearts. As I look back to last August when we first met these men, our super hero's, I am trying to imagine what must have been in their thoughts as they met us for the first time. What made these guys say “we will be there for you, always, just say it, whatever you need and we will take care of it'? These are real men with big hearts doing what they do best, caring for others.  This is the stuff that real super hero's are made of.

This is dedicated to all who worked so hard to make the parade a wonderful success, families, friends, city employees, EMS Dept.,schools, volunteers, all working together, all one community. 

Click here to watch Courtney as the Grand Marshall!

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Sunday, November 25, 2007

Courtney this montage is for you my precious princess.
For the past three years, each August we have gone to the Toyota Center to see The Wiggles. We have met, hugged, sang and danced with them. We love The Wiggles!

2005: This was the first show/concert that you ever got to go to. I had gone months in advance to scout the place out for seating arrangements for you. The Toyota center took me on a tour which was good because had I not gone they were going to give me regular handicapped seating and you would not have been able to see. We got front and center row floor seats for you. I did not know anything about getting in touch with the show promoters for a meet and greet so we didn't go to one this time. Each time we go out it seems we learn something new. This time we had forgotten to take the cord that hooks the vent to the battery! When we arrived and unloaded you we realized what we had forgotten. We rushed in the center and plugged your vent in while Grandpa and Aunt Shirley drove back home to get the cord. In the mean time the show was preparing to start and the Toyota Center people were rushing around trying to find a power outlet and cords so your vent could be plugged up so the show would not have to start without you. We switched seats, still front row but off  to one side on the end of the row so we could plug the vent up. The show started about ten minutes late and Grandpa arrived with the plug about five minutes later.
After all this excitement we were happy to settle down and enjoy the show, which we did! On either side of the stage were these great big screens, and when The Wiggles started to come out on the stage in their car it showed them on each of the screens also. You were watching the screen like it was a tv and not the stage. It was like you thought we had brought you there to watch tv. Your mommy said look over there on the stage Courtney, there they are! They are here! Your eyes were so big and you turned your head back and forth from the stage and the big screen as if you were thinking to yourself real/tv, tv/real! As soon as Murray and Anthony saw you they directed all their attention to you. I guess they could tell right away that you must be someone special. Murray stood right in front of you on the stage and kept waving to you and when Anthony would get in front of you he would stop and wave to you also. During the show Murray jumped off the stage and came to you and stood so we could get a picture of the two of you together. He was so kind, I will never, ever forget Murray for this. Later on they asked you and your mommy to go to the stage to give them the poster that you both had made together for The Wiggles.  Anthony even asked everyone in the audience to say hi to "Courtney". The camera man focused his camera on your poster so everyone could see it on the big screens. Your mommy and I were crying so much, even the ladies sitting near us were crying as well and we had never seen them before. 
After the show ended as we were being escorted out, a lady and her little girl stopped your mommy to say that they were sitting up in the higher seats and the little girl saw you and asked her Mommy if she could go meet the girl in pink ( you, Courtney). 
What and amazing day, this was the beginning of many times that you would be going to concerts.

2006: Courtney this time I contacted The Wiggles Show promoters and a nice lady there named Melissa made arrangements for you to go to the meet and greet. I remembered how Murray had jumped off the stage and come to see you during the last show so when I met Murray I gave him a great big hug. You were all smiles as The Wiggles talked to you. Your little sister Kendall still didn't seem to understand what all the excitement was about; oh but your mommy did, she was smiling and beaming with pride for you. I was holding up pretty good and had not started to cry yet but just as we were leaving Anthony called out " we will see you again next year Courtney". Just thinking that we never know if there will be a next year made me cry. Your mommy was crying already. The show was wonderful and you and your mommy were asked to go to the stage again, this time to give Dorothy the rose that you had for her. Just like last time Murray and Anthony paid special attention to you and even some of the dancers would come to you and wave and smile at you. We had another wonderful time with The Wiggles.

2007: Courtney we have met some really great people and Eric Margolis at the Toyota Center is one of them. I only have to call him for your special seats, he already knows what your needs are. It's kind of embarrassing because both the last show and this one he asks if we will need a place to plug your vent up. I guess they will always remember the first time when we forgot the battery cord. Melissa with The Wiggles got you tickets for the meet and greet again. All of the Wiggles remembered you and you got to meet Sam for the first time. Murray sat down next to you and spent so much time talking to you. That Anthony is so funny, he saw your bracelet had a pink ladybug on it and said oh you have a ladybeetle on your bracelet. We all laughed at him, he said thats what they call them in his country. You gave them all Cure SMA bracelets and all of the Wiggles put them on. Once again during the show you and your mommy were invited to approach the stage to give Dorothy your flowers. Gosh I just can not believe how nice these guys are. Your mommy was all in tears again after being asked to go to the stage. As you and your mommy were leaving the stage Anthony said "see you next year Courtney". Once again I started to cry at the thought of a next year.  You are soon going to be five years old my darling and I am praying each day for a cure for your terminal illness. Yes Anthony, we will see you all next year at the next Wiggles show.  

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Friday, November 16, 2007

Princess Courtney has been invited to be the Marshall in the Christmas Lighting Parade! Click here to see her picture with the Fire fighters!
We can not believe it and are so blessed to have the Fire Fighters in our lives. These people have opened up their hearts and accepted Courtney as their own. Thank you Lord for our many blessings!

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Monday, November 12, 2007

Last week Candace saw on tv that Barney was coming to the Cynthia Woods Mitchell Pavilion. I called right away and was connected to Kelly Rich the Event Manager. She took immediate action and we had a conference call with Cindy. All the arrangements were made, from parking, medical escorts to special seating. It went so smoothly that I knew God had his divine hand in this for sure and I prayed that little Hayron would be able to go. Kelly and Cindy told me that they might be able to get Barney for a meet and greet for Courtney and Hayron, even though there wasn't supposed to be one for anyone. I didn't tell the Merida family because I didn't want to get their hopes up.
It's about an hour drive for us but only about five minutes away from Courtney's best friend Hayron. The Merida family rarely take Hayron out, like Courtney he has the terminal illness Spinal Muscular Atrophy type 1. Even being exposed to a common cold could be horrible for these children, landing them in the hospital for weeks or even end their lives. I told Hayron's dad, Manuel about Barney and that it would be outdoors. He finally decided that since we were going with them and it was so near to them that they would take the chance and join us.
Spanish is their first language, but we some how manage to communicate well. Manuel felt comfortable since I would be with them. The family left their home and families in Cuba to come to our country in search of the best medical help for Hayron.
Manuel said since they came to this country, Hayron loves Barney.
The day was magical! Right from the beginning everything was perfect. As soon as we drove up to the VIP entrance we told the attendants our names were on the list and they called Katy and Cindy. We were escorted to our seats, and about ten very nice people helped us and treated us like royalty. The montage will tell the rest except in the last video clip, by the time Barney was meeting Hayron everyone was crying. Barney was so gentle and loving to both Courtney and  Hayron. To see the tears in Hayron's parent's eyes, as Barney knelt next to little Hayron it was a special memory I shall cherish for the rest of my life with all my wonderful memories of my precious Courtney. Thank you Kelly, Cindy and Barney for making this a magical day! Thank you Lord for your many blessings.  Click here to watch the Montage!

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Friday, November 2, 2007

Courtney lost her first tooth last night!

I cried with joy! All along I was thinking about that one doctor who told us that Courtney would never live past the age of two and to just take her home, love her and just let her go! Thank you Lord for our many blessings! Click here to see a photo of Courtney and her tooth!

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Wednesday, October 24, 2007

On Monday what started out to be a horrible day turned out to be special. We had to make emergency arrangements to take Courtney to the ER. One of our favorite EMT's, Claire arrived and drove us with the sirens and lights going. To make a long story short, when we got to the hospital Courtney's best everything (DOCTOR, NURSE, RESPIRATORY THERAPIST,etc. all rolled into one person called MOMMY) Candace figured out the problem (changed out the plugged trach). I had the nurse call the doctor back and tell her that we were not going to be admitted that Candace had fixed the problem and we were going home.
 
We were at home the rest of the day doing our usual stuff when our friend Karen called. She's the wife to one of the fire fighters (Joel) that came out to our house for the meet and greet in August for SMA awareness month. She was calling to tell us about the most special surprise, Courtney's fire fighter friends were giving Courtney her very own PARADE! Right in front of our house with lights and sirens going! There were about 3 fire engines and I don't know how many other vehicles. As I held Courtney up so she could see them out her window she was all smiles and giggles. Wow, this made our day, I still choke up with tears when I think about how great these fire fighters are! Thank you LORD for blessing our precious princess with such wonderful friends. We love them all.
If you didn't see the fire fighter montage I did, it is on Courtney's site in the video's section.

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Tuesday, October 16, 2007

Yes you guessed it, we are still trying to get the princess back on her sleep schedule. She is talking/cooing and trying to avoid going to sleep. We hope to get her back on schedule today. On Monday she had a fever, maybe from the flu and pneumonia shot. She is real junky in her chest from the aspiration pneumonia. Courtney has a follow up appointment with Pulmo. early Thursday morning.
Courtney is loving being back home and enjoying spending time with her little sister Kendall.
I have finished repacking the emergency bag and just need to get caught up on the laundry. Supplies came today; I just need a few more things to have them all put away.
Annie our friend at MDA sent us a copy of the story on Courtney that was aired on the telethon. Courtney held her breath while watching it, she does that if it is something she really wants to see and hear. I will get my son to copy it and send out to family and friends. The part where we were interviewed live after the story is not on there though. We love our friends at MDA. Dalia even came to visit Courtney at the hospital on the day of her surgery.
I spoke shortly to our friend Dawne Sweet today after her husband Larry's surgery. Please continue to keep this family in your prayers.
Please continue to pray for our dear MJ; she should know by today when she might get to plan on going home from the hospital.
Courtney's little prince Casey had to get treatment for bites again. He is very sensitive. We will continue to hold him and his family up for prayers as well.
I feel bad about not getting in touch with everyone more often, it seems like I am having a hard time keeping up with a lot of things lately. My loving children keep telling me I am "OLD". I still can work circles around each of them though and I guess it shows on me more now than it used to. Funny how I am turning into my MOM. Candace told me my skin looks like Grandma's (my mom) now. I would have thought this would be a bad thing years ago but now that my age is showing (big time) I have to tell myself that it isn't such a bad thing after all. I just told my loving (smarty pants) daughter Candace what my mother told me " I am your future, your time is coming'. Her loving remark was " not for about 30 years though". Geez, the kids now a days just don't respect their elders, do they? Did I just say that???

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Saturday, October 13, 2007

1:30pm waiting for ambulance transportation to take us Home!

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Friday, October 12, 2007

WE ARE GOING HOME TOMORROW! Keep those prayers coming, we are preparing to be discharged in the morning. We are sending everything home tonight and I have the Clindamycin prescription already filled. Courtney slept half of the day and is feeling great, smiling and playing with her princess balloon's that Kyle Gundy sent to her. Courtney sends her love to Kyle and hopes to one day thank you in person. 
I spoke to Dawn this afternoon (Courtney's Prince Casey's mom) and reassured her that Courtney is doing better. Gosh we love them so much, it is so hard to be so many miles apart.
We are praying for our MJ that she too will get to return home soon. Courtney sent her a balloon and a heavenly Ty bear that matches the one that Courtney has. Prayers going out for all the other sick 
Special Made Angels also. 
 
We want to ask for prayers for a special friend, Mr. Sweet. We have faith and know the out come will be good.  
We can never thank our friends at the City of South Houston Fire Dept. enough for all their prayers, concern and friendship. There are so many of you that have emailed and called, we thank you all so much and love you all.

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Thursday, October 11, 2007

We thought we lost her..................
This morning Courtney was vomiting..........She crashed and Candace could not get her back up even with IPV or bagging. We had to get the doctor and respiratory rushed in.  I could not believe it, she was turning blue around her mouth right before our eyes and everything we knew to do failed. We knew she did not need an emergency trach change; it was just brought on by the vomiting. The room was full and we were all staring in disbelief as Candace and the resp. therapist worked for at least 30 minutes on Courtney. Finally they gave her albuterol in an MDI which is basically aerosol inhaled through an aero chamber into the trach. We were told that she was having spasms when she gagged. Even though we inline suctioned each time she may have aspirated. We all believe this was brought on by the lavage that was done on her lower left lung on Tuesday. Courtney could have a virus that is causing the vomiting but all the secretions that let go when I turned her to her left side was surely caused by the lavage. Iv clendamycin was started and the Tobi was discontinued. It may be several days here before our Princess gets better. She is having a high fever right now.
Please continue your prayers for Courtney, I will update again soon. I am so thankful for our darling Courtney, she is so brave and strong.

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Wednesday, October 10, 2007

All is good...........
We hope to go home today! Courtney is doing well, she is going to have an xray this morning and the flu shot before we leave. The nurse brought the sling in for Candace and I to use to get a more accurate weight on Courtney. She is getting to be such a big girl now; her weight is 45 lbs. and her height is 46 inches! We can hardly wait to see the xray to see if the lavage made a change in the left lower lung atelectasis.
The beautiful basket of flowers that Courtney's fire fighter friends from South Houston sent, continue to brighten our days and nights with their beauty and their sweet smell fills the room.
Thanks so much to you all for your prayers; we love you all.
Prayers needed for Courtney's SMA friends MJ and Prince Casey. MJ is the amazing young lady who maintains Courtney's site and of course Prince Casey as you all know is Courtney's handsome boyfriend. MJ went to the ER on Tuesday evening  with abdominal pain and vomiting. Prince Casey is having some stomach issues as well.

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Tuesday, October 9, 2007

Courtney's feeds were increased on Monday to a rate of 20 but she threw up. She is now off her feeds after midnight with just the IV fluids running because of the bronscopy and lavage that will be done at around 9:30 am in day surgery. We were told that it will most likely be
Wednesday before she gets discharged because she will have to build back up to her usual rate on her feeds after she returns from recovery tomorrow.
Courtney received a beautiful basket of flowers from her friends at the South Houston Fire Dept. on Monday. Gosh we love them all, they are such a wonderful bunch of people. Courtney even got a patient e-greeting from her Prince Casey.
We met a new friend, Stephanie Johnson, she is a tech at the hospital and also volunteers at the Deer Park Fire Dept. It has been good to see all our friends at the hospital, Patricia, Chris, Tuesday, Eddie and so many more. We love them all but are glad that we haven't had to go to the hospital in such a long time.
Keep those prayers for our princess coming, we appreciate them all. 

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Sunday, October 7, 2007

10pm

Our angel woke up at 9pm and is all smiles (click here for picture). I even heard her giggle a few times while watching Treelow on Bear in the Big Blue House. Thank you Lord for the biggest blessing in our lives, our precious darling Courtney!

7pm

We almost always get to see Courtney's bestest nurse ever, Patricia when Courtney is in the hospital. Patricia's birthday is on October 13th so we had Aunt Sarah bring up a little cake for Patricia and I went down to the gift shop to get a little butterfly sun catcher for her. We hope to be going home on Tuesday so we won't get to see Patricia again this visit. Courtney did not want to wake up for this picture and never even woke up when we all sang Happy Birthday to Patricia. We love Patricia so much she is just the sweetest person.
Courtney is scheduled for a cat-scan of her chest on Monday and then a broncoscopy on Tuesday. Dr. Colasurdo wants to find out more about the atalectisis in the left lung that has been there for a while. He said he wants to make sure there is not some kind of infection inside the area. He will lavage (inserting saline into the area to test, wash and break it up). I will keep you all posted; please keep the prayers coming.
Prince Casey your little Princess Courtney sends hugs and kisses to you and wants you to please stay well.
Miss Dawne, thanks so much for your concern and prayers we love you and are praying for Mr. Sweet.
We had such a fun time visiting Courtney's best friend Hayron and sitting out by the pool the weekend before last. We love the whole Merida famiy!
Firefighter Capt. Daniel Olivo and Firefighter Joel and famiy, we love you all so much!
Courtney has a new friend, his name is Brian, who works for Baystar Ambulance Service. He is an amazing person. Thanks so much Brian, Courtney's vein you started for her on Wednesday is still going. Hugs, Linda
 

12pm

Courtney is doing better! She has not had any Morphine since 7:30 Sat.night and last Tylenol was at 1am. I even got a HALF SMILE from her. We started feeds at  a slow rate of 10 to see if she can tolerate it. She is able to watch her DVD player. We are not moving her abdomen much yet. We are doing our usual turning every hour when awake and every two hours when sleeping. Courtney did not cry or show signs of pain when Candace gave her the IPV treatment.
On a happy note Courtney has her BEST NURSE ever on duty today and had her yesterday as well. I will try to take a pic with my phone before she gets off today. We love Patricia, she is the best!
Thanks so much MJ and Brenda for doing such a wonderful job on Courtney's site and keeping everyone up to date for us; we love you bunches.
Thanks everyone for all your prayers, we are so thankful to have all of you.

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Saturday, October 6, 2007

7pm

Oh no, she has a fever now and is going to start on inhaled tobi antibiotic. She is so swollen in her face, tongue, hands and feet from the sodium chol. she is given for the dehydration. Her nostrils are flaring and we think it is an upper respiratory infection. Courtney is moaning and crying in pain when she gets the IPV treatments. She is still satting 100 though. I miss those pretty princess smiles...........

3am

The nurse increased the IV for Courtney so she finally did have 3 wet diapers with out having to be cathed. She woke up for a bit but still has a high heart rate. The blood work came back all good. Candace and I are relieved that the surgery is over; we are finally feeling the exhaustion and struggling to stay awake. Candace is sleeping now, I hope I can stay awake so she can at least sleep for two hours. We do everything for Courtney and guard the door to catch those that try to enter with latex gloves ( Courtney has Latex allergy). Someone touched her during surgery so she has a rash on her arm. Courtney's stomach looks horrible. Poor baby, I feel so sorry for her........

12am

Courtney has not had a wet diaper since 10 am so they checked her blood and she is dehydrated. They are fixing to cath her now at midnight. Courtney is still not waking up since she returned from surgery I think at 3:30. I only know it is a bard and now she has two seperate buttons which it is supposed to be easier to redo next time in about a year and the site is moved down. The surgeon by passed the fundo since it never worked anyway.

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Friday, October 5, 2007

Courtney's g/j port broke so they are in the hospital and thought they were waiting on standby for surgery for sometime
tomorrow. Courtney ended up having surgery today. 
Linda just e-mailed saying "Courtney made it through surgery and is doing good 
and back in her room. We should get to go home on Tuesday. God is so good!" 
They are using the hospital computer so she will check back in when she can. Keep the prayers coming!

MJ (Princess Courtney's Website Designer)

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Monday, August 27, 2007
 

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Wednesday, August 15, 2007

August is National Spinal Muscular Atrophy Awareness Month so we decided to spread awareness about SMA in our own community of South Houston. We invited the City of South Houston's EMS and Fire Department Volunteer's to our home to meet Princess Courtney on Thursday August 9, 2007. We didn't really expect but two or three to show up but we were really surprised when eight of the volunteers arrived. We had a fire truck and an ambulance at our house. All of them were so nice and just kept saying for us to just let them know what ever we needed and they will be there for us. Candace got Courtney up in her stroller and took her outside to see the big red fire truck. Kendall went with Fire Department Capt. Daniel Olivo to check out the truck up close. One of the fire fighters even dressed in full uniform for Courtney. EMS Chief Charles Sluder's ambulance didn't get to stay long before being called out. There is just no way I can ever express how much meeting these wonderful people meant to us. I have to say it one more time......GOD IS GOOD! Video Montage with Music to follow....

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Tuesday July 3, 2007*