December 2011
Dear Family and Friend,
It
is hard to believe the year end is already here. It seems like we just
put all of 2010 Christmas decorations away and now we are back at it
putting the tree and all the trimmings back up. Isn’t this a sign of
getting older?
This
year has been quite a year and I have to admit that even with all the
amazing blessings I am happy to say good bye to 2011 and welcome the New
Year.
The
year started off with Tanner in the emergency room and a bout with
pneumonia for the second time in four months. A bit scary for us but
more of a bother for him as it cut into his school time and his social
life. Tanner loves school and learning. He is now in the first grade
and loves it. He is also a Cub Scout and couldn’t be happier. He is
looking forward to the up coming Encinitas Christmas Parade where he
will finally get to be a part of it with his pack. He has express to
us that he wants to grow up and be a “ladies man”; which he explained
is a man that treats ladies with respect and love. He proved this to us
this summer by “marring” the little girl down the hall. He is so
smitten by her.
Pria
is now in the 5th grade and continues to make us so proud. She is one
very compassionate young lady; always looking out for her brother and
others. She continued with Girl Scouts, (she has a great leader) and
gymnastics. She had her first out of state meet in AZ last January and
did great. She continues to grow in the sport. Her favorite events are
floor and beam. Boy, does she make her mom nervous, but very proud.
She continues to fight the RRP and will be having her 37th surgery two
days after Christmas. She is one courageous young lady and we are so
blessed that God chose us to be her parents.
2011
started off really tough for my employer, Md7, and in April I was given
my pink slip along with about half of my co-workers. The company went
from over 125 employed to less then 40 due to economic hard times. As
difficult as this was and continues to be for us both emotionally and
financially it was a blessing in disguise. A month or so after I was
laid off Tony ended up in the hospital with diverticulitis and a whole
in his bladder. Eight days later he was sent home with a pick line and
tubes coming out of him, that doctors said I would need to care for.
This is just not normal or right. I am not a nurse and tubes are not
supposed to come out of people. Six weeks later he was back in the
hospital for what was to be a routine surgery and a 3 to 5 day recovery.
Eight days later he came home with a big opening in is tummy along
with a daily visit from a nurse. Again not normal! This lasted two
weeks. So can you see my blessing yet? I was so glad that I was able
to be there for Tony and the kids. I can not imaging juggling all this
and a job.
Both Tony and
I continue to look for work. I am hopeful that something will come my
way soon. I send out an average of ten resumes a week. Any of you want
one? I have a lot.
God
has continues to see us through each day and we know we could not do
this with out Him. We can already see Him at work on our family’s
behalf for the New Year. Tanner is in the process of starting a
Clinical Trail that could be life changing for him and many other young
men affected by Duchenne Muscular Dystrophy. We are also going to be
part of an Annual charity 5K Run/Walk on January 21, 2012
with the Mitchell Thorp Foundation. This will help us get Tanner to
his next doctor appointments in Ohio. We’d love it if you’d consider
joining our team.
I
know we are not alone with all the tough times 2011 has brought with it
so we thought it might be fun to give you all the gift of laughter.
The ability to laugh at life and ourselves has been therapeutic for us
and we hope you too will find some joy at laughing with us at this
year’s family Christmas photo. God bless you and we hope we get a
chance to see you all in the New Year if not sooner.
Merry Christmas and Happy New Year,
Tony, Traci, Pria and Tanner (The Rico Family)
Happy New 2011!
Hard to believe it but Pria has had 10 more surgeries since my last update in April 2010. Her summer was spent having surgery every two weeks while having injections of Cidofovir into the effected area. The hope is that it will slow down the growths and put her into remission. The doctor tells us she has a 40% change of this. We will take it! Since September she has been undergoing surgery every 4 weeks. His included a Thanksgiving surgery as well as a Christmas surgery, so we feel blessed that we are now getting to go 6 weeks between. Through this all Pria still keeps her chin up and her faith strong. She is an inspiration to both Tony and I.
Pria has become an advocate for though going through there own challenges in life. At the end of her third grade year she was recognized for this by receiving the California Distinguished Student Award for Courage. She accepted this honor with such humility and grace. We couldn’t have been more proud of her. This year she has taken on a project to collect tabs and pennies for the Ronald McDonald House. With the encouragement of her teacher she has reach out and got her whole school involved.
Pria has also continued with her gymnastics and made the YMCA team. She has had her first taste of competition and loves it. We always knew she was competitive. She made is all the way through sectionals and missed making it to state be less than a point. Not bad for her first year at competing.
Tanner is officially a big kid, as he has started kindergarten and has lost his first tooth, which he was very excited about. Tanner loves learning and is keeping Tony and I on our toes with all his 5 year old wisdom. Did you all know that, “girls are cute and teenagers are hot”, however I am not hot, because I am a mom? Also did you know that a teenager is classified as anyone his sister’s age and on her gymnastic team?
Tanner continued his third season of Miracle League baseball for the Tampa Bay Rays. This year Tony Gwynn Jr. came out and pitcher for the players. He and his family along with other players form the Padres came out and really blessed these kids. To bad Tanner has no idea how he was. We parents were all pretty impressed even if the kids weren’t.
Tanner’s year may seems to have been less eventful than his sisters, however it has not been any less stressful. His last appointment in Cincinnati revealed a compressed fractured vertebra. His doctor requested we return in November, however due to finances we were not able too. We are now scheduled to return in just a few weeks. The time could not be any better as we just experienced the scare of his elevated eye pressure as well as a battle with pneumonia accompanied with an ear infection.
We have been so happy to see the Cure Duchenne commercials during the foot ball games this season. We hope you have all seen them too and will say a special pray for Tanner every time you see them.
April 10, 2010
It has been quite a while since my last update so I will try and make this one quick. . .
Pria under went her 20th surgery in February and it was not very good. She had very little airway as her growths had grown so large it was blocking the majority of her airway. If we would have waited much longer we may have ended up in the emergency room. Over this last week Pria has expressed her concern that she can feel the growths again and it is becoming harder to hear her. So I imagine we will be back in surgery with in the next few weeks. Pria continues to amaze us with her strength, courage and her faith in the Lord.
Tanner has finally stated to grow. Since October he has grown almost 2 ½ inches and has finally hit the 40 pound mark. It is about time all the growth hormones and steroids have taken effect. Pria has even learned how to give him his nightly injection and he no longer minds it as long as it is daddy or sissy giving it to him and not me. He will be starting kindergarten in the fall and is so ready. Our biggest concern is all the “experts” have all made the same remarks to Tony and I, that his walking is becoming more labor some.
Both the kids are participating in the Miracle League, Tanner as a player and Pria is a buddy to a sweet 9 year old girl. I tell you if you have never been to one of these games it is so worth it. It can turn any bad day into a very special day. To see these kids get out there and play ball with all the challenges they face is quit heart warming and inspirational.
Please keep us in your prayer as we prepare for Tanners next upcoming trip and our big fundraiser on April 24th. Blessing Everyone – Rico’s
December 2008 – April 2009
I have been a bit behind in getting our website updated. Life has been crazy as always at the Rico home.
December seem to fly by one night while we were all asleep. Seem like we woke up on morning and we were into the New Year. January Tanner had to have some major dental work done and Pria had her 17th surgery. Both did great.
Tanner stated his steroids in January as well and praises the Lord he has not experienced any side effects. He has not encountered any of the puffiness that normally goes along with being on steroids. That truly is an answer to many many prayers. I know it seems shallow, but the way we see it is he has so many other issues to deal with and has already experienced kids making fun of him that he did not need to be dealing with that side effects too. We thank Jesus everyday for this.
We have also started the process of finding out if indeed he has Russell Silver Syndrome. We hope to have the answer on this before we go back to see Dr. Wong in July. We have already met with the genetic doctor and we are waiting for the paper work on the blood test. Both Tony and I have to have the same blood draw done and tested with Tanners. I really do not quite understand why, however will do whatever is needed to help my little ones.
Tanner’s great news is he is starting school as soon as school resumes after Easter break. He is sooooo happy. So happy in fact, that he has decided to potty train. Mom and Dad are even happier. We are hopeful that we have bought our last package of diapers.
Pria is going wonderful! She is scheduled for her next surgery in April and the good news is her voice is just beginning to show signs of the growths returning. She said to me the other day that people are just now asking her to repeat herself and telling her they can’t hear her.
Pria is also doing great in school as well as her gymnastics. She is such a compassionate girl and we are so bless that the Lord chose us to be her parents.
Well that is the latest in a nut shell. We hope we will see you all at our upcoming fundraisers on April 21 at Today’s Pizza in Encinitas or at our big event on May 2 at Pat D’Arrigo ARTS Center.
November 2008
Happy Thanksgiving! Wow do we have so much to be thankful for. First we are so thankful to all our family and friends who pray for our family and have helped to see us through our ups and downs. We are so blessed.
Day three we saw Dr. Rutter, the endocrinologist. She really put our minds as easy with his growth. For the first time Tanner in on the growth chart. He is in the 3%. This was such great news as we have been giving him growth hormones for the last 5 months and knowing they are working for him was a big relief. At the rate his is growing they say he should grow four inches in a year. That alone is something to be thankful for.
Two days after we returned from our trip Pria was in having surgery number sixteen. She is an amazing girl. She did great. She was pleasantly surprised when her pastor “Papa Bear” showed up to see her off to surgery. He prayed with us as we waited to be called back to meet her in recovery. It was nice to have the company and the comfort of Bear with us as we wait to see our precious girl. The growths were back, however they are confined to the same area as they have been over the last 16 surgeries. So we will be back in ten.
August 2008
Tanner is on month 3 of the growth hormones and doing well. In his words, “I am growing bigger mommy, inches”. You know I am not to sure on it being plural, but he is growing. He also seems to have an appetite. Another good thing! Pizza his food of chose these days!
March 2008
We are working on putting a team together for our annual MDA Stride and Ride 5K on March 2, Tanner’s Trotter. This should be a great time. If you’d like to join us send us an email and we would love to have you be apart of out team.
Thank you for your continued prayer we need them more than ever right now. God bless you and much love to you all.
January 2008
Wow what an amazing year we had, and what a great beginning to 2008. Pria had her first surgery of the year on January 8th. We were a bit nervous has her voice was very strong, however knowing her tumors has spread down her wind pipe we could only assume they were not on the larynx and that was the reason for her strong voice. We were wrong. The tumors were still on the larynx as well as in her down her air way, however the grows seemed to slow down. Praise the Lord! He is answering our prayers, and this was hopefully just the first of many to come.
November 2007
I have been struggling with sending this up date. Pria is doing well, she did great on Tuesday.
As many of you many know RRP is very rare. There are only 20,000 known cases in the US. In 2006 there were a little over 2,000 new cases. Pretty rare. Most cases with children the tumors grow until they reach puberty and then go away. Our hope. Also most cases the tumor continue to grow only on the larynx. However in very rare cases the tumors spread down the airway and in even rarer cases into the lungs. Well, Pria's has spread down the airway. Pria's doctor who is one of the best, was hoping to spread Pria's surgery out to every 8 - 10 weeks as of her last surgery. We now have a change of plan. No longer than 6 weeks between surgeries. The doctor has told us that in cases like this it is not uncommon to have to the surgery every ten days. Yes, I did say ten.
I ask please if you pray, to please pray for healing on her. I know the Lord will not give us more than we can handle and he will bring us through all of this. Tony and I are trying really hard to keep our sprits up and be positive. We do feel all the out poor of prayers and support, thank you. It is what helps us get through all of this.
October 16, 2007
We made it through our 8th surgery in 13 months. Does it ever get any easier? Pria is doing as well as can be expected. She has been sleeping all day. The tumors were not to bad this time, however the big issue was the scare tissue that has fused her larynx together. The doctor added a topical medication to the area that should help reduce the scaring. Judging from the size of the tumors that doctor said Pria could go ten weeks this time, however for her emotional well being we will be going back in six weeks. This is to see if we can stop the scaring by adding more of this medication to slow it down and save her voice. Pria has been expressing how difficult it is at school with her voice being the issue.
Tanner is doing well. He seems to be eating better thanks to all the Vitamin and supplements we have him on. I think he may weigh twenty pounds now. YAH! He is continues with his horse back riding and his PT weekly as well as we have him going to the YMCA playroom now so Tony can get a work out.
September 17, 2007
We have just returned form one of the most amazing weekends. Our family was one of a group of 60 that went down to Mexico to help build homes for those in need. We worked with an organization called Home’s for Hope. It was an eye opener. They kids and I helped with the painting and Tony helped in the building. The family we built a home for was a mother and father and three kids. They were living in a make shift shack no bigger than our bathroom. By Sunday afternoon they had a beautiful 16x20 home with a roof. It was awesome. Pria and I also got to be a part of the team that took the family shopping while the rest of out team put the furniture together. It was a weekend we will never forget. I have posted a few pictures if you are interested.
August 27, 2007
We survived the summer Ohio heat and rain, and boy are we glad to be home. The trip was everything we had hoped it would be and then some.
We can not give enough praise to the Cincinnati Hospital staff. From the doctors to the administrative staff everyone was wonderful. They made us feel as if we were there only patient for the day. It was a breath of fresh air. It was not always easy to hear what they had to say, but somehow we were able to walk away with a since of hope for Tanner and our family.
One of the hardest days was the day we learned that Tanner does not have the nonsense mutation from of Duchenne Muscular Dystrophy. In laymen’s terms he is missing the gene that produces the protein that restores the muscle breakdown, and therefore does not fall into the 15% of boys that they are hopeful in finding a cure for within the next year. On the up side of this the genes he is missing is gene 49 and 50. Of all the boys with the missing genes these two are the most common and therefore more research is taking place to help find a cure.
We learned a lot this past week about his heart as well as his liver. Both his heart and liver are normal and strong for a boy with Duchenne. If he did not have the Duchenne disorder we would be looking deeper into these issues. Tanner had more test this week, than his sister will have in this coming school year, and he handled it with amazing strength. We are so proud of him.
One of the things to come out of all the test was he was confirmed to have Failure to Thrive, due to the low growth hormone. The plan now is to working with the nutrition staff as well as Dr. Brenda Wong, the lead doctor and sees if we can get his weight up. We will then re-evaluate him in six months at which time the plan is to begin growth hormones and steroids together. If it wasn’t for the Failure to Thrive, they would have began him on steroids this visit, as he is much weaker that we thought him to be. However due to the side effects we all in agreement to wait six months, although Tony and I would agree to wait longer if the doctors felt that was best.
Pria has become very aware of Tanner’s illness and what the future may hold for him and our family. She is also expressing concerns about her own medical condition. She opened up to my sister on this trip and expressed her concerns regarding her own health issues as well as Tanners. As she put it to my sister, “I worry about my mom when she cries.” This was very difficult to here, as she should not have to ender so much; she is just a little girl. I have made her a promise to not talk so much about all of this in front of her. Please remember her in your prayers.
We are still processing the vast information that was giving to us in such a short amount of time. I am sure we will have more questions as we get more test result back and all the final reports are present to us with in the next two weeks. For now we are looking to the future and working on planning the next trip for February 2008, as well as making planning on how to better our San Diego MD clinic, all the mean time dealing with the hear and now.
August 9, 2007 Pria had her surgery today. She is recovering well and her voice is sounding pretty good. The tumors were smaller this time; however she has developed some scare tissue. The doctor referred to the scare tissue as webbing of her larynx. We are going to see if we can go 9 weeks between surgeries this time. Our hope is that on the next surgery, which will take place in mid October, Dr. Pranski will be able to use the laser again as the “webbing” will not come back.
After surgery today she was able to see her friend Bryan for a few minutes. This really lifted her sprit, and we hope his as well. This was sadly cute to see two great friends from kindergarten embrace in a heart warming hug as they both under go treatment at Children’s Hospital. These kids are at there lowest points in the lives, yet are compelled to help one another. It was beautiful.
I have to share a sweet story…..The night before surgery Pria asked me if as many people prayed for her as they do for Tanner. I responded with, absolutely, and it was confirmed. When we got home we received two phone calls. The first one was from a woman at our church who was calling because she has been praying for Pria and wanted to get an update on how she was doing to pass on the Caring Corner Ministry, which is our churches pray chain. The other call can from a dear family friend who was woke up in the middle of the night and began praying for Pria. Both people did not know Pria was undergoing surgery today. So yes, Pria people do pray for you just as much as they pray for Tanner.
We had our “Lemon-aid for Tanner on August 4th. It was awesome. We had so many come out and support us in so many ways. We had three different news channels come out to help share our story with San Diego. Tanner loves seeing himself on TV. We raised enough money to pay for his AFO, which we will finally pick up this week. In addition we were able to take care of paying of two of the many bills we have with Children’s Hospital as well pay for some additional PT and OT we have Tanner in and set some aside in an account for his next trip to Cincinnati.
We have so many wonderful stories from that day, but one stands out... At one of the stands there was a park bench that an elderly couple sat and visiting with the girls hosting the lemon-aid stand, (Pria’s classmates Tess and Jordyn and there moms). When they were about to call it a day the couple asked them to count the money. They did, and the couple matched the funds raised. We received a note from them along with the check they gave to Conner’s Cause for Children on Tanner’s behalf. The note told us they saw Tanner on the evening news and wanted to help and be apart of the day. The drove up from Coronado and also shared how they had always wanted to have a lemon-aid stand as kids. It was very touching to read, and know they care. We appreciated the notes we received from so many just as much as we appreciated the contributions. We also received noted from several young girls who hosted a lemon-aid stand, and gave Tanner well wishes. Thanks you to so many for all the love and support.
June 20th Pria had her surgery on Tuesday, June 19th. The tumors were much larger than we thought they would be. We are very grateful she had her surgery when she did as her air way was very small. Because of this we are not going to be going as long between surgeries this time. Her next surgery has already been scheduled for August 9th. The good news is the doctor did get a new laser to use for her surgeries. The hope is the tumors will grow slower as they can get more of the tumors removed with out the fear of scar tissue building up.
Tanner was fitted for Ankle Foot Orthosis, also known as AFO's, last week and we will be picking them up in July. It is our hope that he will only need to sleep in them at this time; however we want what is best for him and if he has to wear them during the day we will.
We got our tickets to Ohio and are looking forward to a more hopeful medical experience. Cincinnati Children's Hospital Medical Center (CCHMC), is the only neuromuscular center in the US that brings together all necessary specialists in one location and provides coordinated care. They believe in working together with a comprehensive care center to improve the care, outcome and quality of life for children under there care. We share their conviction. Tanner's first appointment is on Tuesday, August 21 and continues for three days.
We are also looking to rent a home in the Cardiff area. We are currently in an apartment, but it would be a blessing to have a home were the kids could play outside. Tony dreams of being able to go outside and play ball with his son. We know we only have a short window for this so we have decided to look at moving. We need to find a single level home for Tanner, as we are long term renters and stairs are hard on him. Cardiff is home for us and so if we have to remain in an apartment we will; however if anyone knows of a reasonably priced home for rent in Cardiff, please let us know. Thanks!
Finally, thank you to everyone who has support us and helped with such generous donations to us and Conner’s Cause on behalf of Tanner and Pria. This up coming trip would not be happening with out all the support. We are truly blessed by the Lord bring so many wonderful people into our life. Lord bless you all.
Tanner is doing well. His first doctor appointment in Cincinnati has been scheduled for the first part of April. We continue to struggle with getting him to eat well. I guess that will be a constant up hill battle. The talk with our doctors at the last appointments is to get him started on growth hormones as well as steroids this year. Please pray the Lord give us direction on this.
Pria’s next surgery will be in 8 weeks. This will be right before her seventh birthday, which she has request to be a “Children’s Hospital Toy Drive Party”. As her mom and dad, that made us very proud.
We had a bummer of an experience this month as well. We were involved in a car accident, 100% the fail of the other party. We are all OK, just the typical body aches, however our car was in pretty bad shape. It is not drivable and so we have to deal with all the head aches of getting our lives back to, “Rico normal”. Pria lost her tooth in the accident, we thing she may have swallowed it. She has the cutes toothless smile now.
Two weeks after Pria’s surgery on January 8th her voice began to go. After being through this 11 times you begin to know the sign as to how the growths are progressing or not. We knew this was not good. It was confirmed when her doctor got her in with a one day notice. The tumors were larger and the scar tissue was back. The webbing has been worst, however we were really praying for it not to return. She will be returning for surgery in March. To bad you can’t get flyer miles for surgery, she would be racking up the miles.
I am working really hard to keep our spirits up. Looking back at all our blessing really helps.
February 2008
God bless you all. Hugs and love ~ The Rico’s
Next month we head back to Ohio for Tanner’s care. Please keep us in prayer for good travels as well as good appointment. I will keep you all updated as we learn more.
Pria turned seven this month and had a great little party at the park. We were so proud of her. In steed of gifts for herself she asked for gifts for Children’s Hospital. She was apart of there Radio-A-Thon at the beginning of the month, and thought it would be cool to help in her own way. We couldn’t have been prouder.
As you all know from our last up date we also lost our car in the accident. Well, we are blessed with another answered pray. We were given a 2002 Ford Explorer. Thank you Jesus! We had no idea how we were going to take care of the car situation. Cool think is the Lord knew.
Wow, we had a miracle of a month. Pria has been healed. We went in for surgery this month and the doctor was shocked to see there was no evidence of any growths. The only way to explain this is our Good Lord has healed her. I know she has been lifted up in prayer and I thank all of you for this, because He has answered and healed Pria. The doctor has asked us to come in for check ups in 3 months, which we will do. No worry here.
We continue to give thanks to our Lord for allowing us the be the parents to these two miracles.
Pria’s scoop that was done in June showed the tumors were back. July was surgery number 13. The growth was very large; however it was not on her larynx. That is good news as it will slow down the scaring. She will also be in a study that will allow the doctor to us the laser on her in the future. Good news again. The bummer news is she will be back for surgery number 14 in September.
We are having a wonderful summer and hope you all are as well. We have had our ups and downs, but more ups than downs and that is always good.
On day two Tanner had echocardiogram and ekg test. Right after we were able to talk to the doctor about the results. His EKG was abnormal but was not a surprise as all MD boys have the same abnormal results. The electrical activity of his heart is irregular and I am not sure if it is too fast or slow. Bottom line his heart is health for a boy with DMD.
We recently returned from our third trip to Cincinnati and as expected the trip was very informational as well as emotional at times. We had three days of doctor appointments and testing. On day one we saw Dr. Wong and she brought up the “S” word. . . . steroids. As much as we thought we were ready for this we thought wrong. It’s tuff to hear the doctors tell you about what lies ahead for Tanner’s life. With out steroids we are told he may be wheel-chair bound as early as six years old. With them we are long at 12 years. Easy answer huh, well not really. Down side to the steroids as most people know is the tempers and swelling, but it also causes the bones to be brittle, and Tanner already has a very low bone density. About a month before this trip Tanner took a fall at the play ground and hurt his back. We shared this fall with Dr. Wong and she informed us that if that same fall happened while on steroids he could have broken his back.