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