IN LOVING MEMORY

IN LOVING MEMORY OF OUR BELOVED DAUGHTER

Deirdre Valeria Medina-Rivera
"Deedee The Diva"
Aug 17, 2007- Oct 22, 2012
Forever 5 years old

"The Lord is my shepherd; I shall not want. He maketh me to lie down in green pastures: He leadeth me beside the still waters. He restoreth my soul: He leadeth me in the paths of righteousness for his name's sake.

Though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me. Thou prepare a table before me in the presence of mine enemies: Thou anoint my head with oil; my cup runneth over.

Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the Lord for ever."
-Psalm 23


Deirdre Valeria Medina-Rivera was buried on Sunday, October 28th, 2012 at Vivaldi Cemetery in Mayaguez, Puerto Rico. Deirdre had two funerals, one in New Jersey (where her life actually took place, touching the lives of many people) and one in her homeland (so family could meet her and see her for a last time).

Our family wishes to thank all the people that one way or another were touched by our diva. The love and support we got from you all through this hard time has been overwhelming and humbling. Thank you.

4:55 AM

It is with a heavy heart that I have to announce that Deedee The Diva was called to Heaven today at 4:55am. She was not sick, she had no plugs, she had no lung collapse. Her heart gave up, and then internal bleeding followed. This came out of the blue, for no reason. We will update with funeral plans soon. Right now... we are assimilation, re-grouping... and trying to make sense of all this.

Synagis Shot Approved!

After getting an initial denial, insurance approved the doctor's appeal for Synagis shots for Deirdre. One less fight in the neverending battle for what Deirdre needs. Thanks to Mrs. Llibre, Dr.V and Dr. M for their effort.

RSV season is here, and the Synagis is a shot that protects against RSV. Parents of high risk children shouldn't forget to consider Synagis shots to prevent RSV infections through the winter RSV season.

The Respiratory Syncytial Virus causes a cold in older children, but it can cause serious life threatening infection in younger high risk children, and children with neuromuscular illness and respiratory distress. These children can develop bronchiolitis, which is associated with inflammation in the lungs, wheezing and difficulty breathing. RSV can also cause croup, ear infections and pneumonia.

SMA kids should get the RSV shot, especially if they go out of their house during fall/winter season. It is not an absolute remedy, but a precaution. As always, use sound judgement and take other profilactic precautions. 

"Children usually develop symptoms about 2-8 days after being exposed to someone with an RSV infection (the incubation period). These symptoms initially include just a clear runny nose, but as the virus spreads, symptoms may worsen, and may include coughing, vomiting, fever (which can range from low grade to very high), rapid breathing with retractions and nasal flaring, wheezing, and poor feeding. In severe cases, children may have apnea and respiratory failure.

Like most viral infections, treatment of RSV infections are usually symptomatic. In children with wheezing and difficulty breathing, nebulized treatments with albuterol may be helpful. In general, though, breathing treatments only help about 25% of children with bronchiolitis, so if your child doesn't have a good response to a breathing treatment, your doctor will likely not continue them.

Other treatments may include supplemental oxygen and intravenous fluids if your child is not able to eat and drink well. Treatment of bronchiolitis with steroids is controversial, and is generally not thought to be helpful. Since it is a virus, treatment with antibiotics is also not usually helpful, unless your child develops a secondary bacterial infection.

Although most children with RSV infections can be safely treated at home, those with a chronic medical condition, need to be hospitalized and closely monitored. Occasionally, children with severe difficulty breathing and/or apnea need to be placed on ventilator to help them breath. RSV can also be fatal in some hildren."

-from About.com pediatrics

Bantam Stander Arrived!

After a quest of more than 5 months, the new stander for Deirdre arrived! We had sent it out to insurance in April, but the paperwork got lost at both ends (insurance & DME). Nevertheless, persistence finally paid off... Deirdre has a BANTAM stander that hopefully will help her achieve many physical goals.

Right now the main concern is that her knees began contracting thanks to going for so long without a stander. It is very dissapointing when details like this goes unnoticed by the service providers... their negligence and lack of interest has this consequences. Now we have to work with Deirdre to see if it is possible to go back to where she was... no contractions whatsoever, and the ability to stand in her stander for up to 6 hours without problems.

Right now we go back to begin with endurance, tolerance, use of knee brace AFO (Ankle foot orthosis), and use of her TLSO (Thoracolumbosacral orthosis: This is one of two main types of braces used to correct the lateral (sideways) curve of the spine in scoliosis. Right now Deirdre has no curvature in her spine, and we want to keep it that way. The main problem is that her TLSO is hard and very tight... We need to seek further advice about this as it is obvious that it hinders her breathing.

We have researched myofascial release therapy, a specialty PT that may help with the knee contractures, but as usual insurance becomes a big problem... We still have to see if we can find a PT for this specific purpose and validate its use for Deirdre.  

Camp Pontiac & Bronx Zoo

Deirdre participated on the Starlight Foundation activity at Camp Pontiac in Copake,NY. That was a 3-day adventure (Sept 14-16) in which we all enjoyed life without pollution or city sounds. Deirdre experienced mountains, trees, a gorgeous lake, mandatory arts & crafts, and she met some other kids with different abilities just like her!

On Sunday 23, Deirdre visited the Bronx Zoo. It was a nice sunny day in which we saw greenery and some animals. She enjoyed the Mouse House, but the treat was the Dora 4D movie, which definitively surprised her.

Besides the outings, our diva had an ENT checkup and pulmonology checkup and all is good. For the next Fall/Winter season she will use Pulmicort at nights and Albuterol in the mornings as preventive nebulizer treatments. We are still waiting on approval for synagys so she has some RSV protection. The stander should arrive next week, and the power wheelchair trial for fiber optics vs mini joystick is also coming up. Hopefully we will have good news soon. Stay tuned!

Kindergarten!

Deirdre started Kindergarten classes on Friday, September 7th. She gets home-bound education during weekdays for two hours each day. Mr.Farina keeps on being her teacher, which is something that she loves. This time she has a complete group of therapists, which provide PT, OT, ST and AT. We are happy to say that finally her assistive technology needs are being addressed by an ATP, and that her speech therapist is someone who knows what to stress, how to reach Deirdre's attention, and is fighting to make Deirdre come back to the level of communication she should have by now when it comes to strangers. Her OT keeps on helping her master the mvement on her thumbs and index fingers, so she can be as independent as possible through the use of switches and the like.

Some details still need to be taken care of, but at least the basics are running and our Deeva is happy and honing some skills. Her IEP needs changes as some details need to be specified... Hopefully an IEP meeting will happen soon.

Overall, we find it very sad and discouraging when there is no real interest in solving the issues of a little girl that needs specific things to reach goals... especially when they are her right. We hope that the professionals that handle her therapies now can accomplish what we have been trying to make the Newark Public Schools understand: Deirdre's illness requires prompt attention. If she looses a skill, it is very unlikely that she can get it back. Spinal Muscular Atrophy is degenerative. Thus is the importance of all the therapies.

At such a young age this is very critical to maintain skills. NPS has been wasting valuable time in bureaucracy, thus harming her educational outlook by ignoring her needs. When parents are educated and know what is the law and what are the procedures to make their kids really productive, people should listen. It is sad that what Mommy has been preaching for 2 years is what now the new specialists are seeing and trying to solve... Why couldn't NPS address these needs when it was all laid out very clearly? It is a big shame. And Deirdre becomes the victim of such lack of interest in her as a person and as a student.

Still, even without the adequate support, Deirdre loves school. People must be reminded that although she cannot talk or move, her mind is intact. She understands when people speak to her, and she has her own ideas, opinions, feelings, and dreams. She wants to be an animation artist! Facing daily challenges because of the lack of a sound support group is beyond unfair. She has a thirst for knowledge, and for expressing herself. She matters. She exists. We keep fighting so communication and independence comes true very soon.





  

DEEDEE Turned 5 Years Old!!!

In August 17, our beloved diva turned 5 years old. This year the theme for her celebration was Pocahontas. She dressed up with her Pocahontas costume, and enjoyed a day filled with music, movies, gifts, and of course cake.

Thank you so much to our friends and family from Puerto Rico and Florida for being there every year! Especially Grandmothers Millie and Edna, Great Grand Aunt Gladys, Godfather Steve, Godmother Maria, and our supporting cast here in our home away from home.

And above all, we thank God for the privilege of sharing our lives with such an amazing young lady! We love you Deedee! Viva la diva!!!

SMA Candle Lighting

The second Saturday in August is the official SMA Awareness Day worldwide. Families and friends light a candle in honor of so many SMA angels who watch from Heaven, and for our SMA warriors who keep fighting SMA every second... We light a candle in hopes for a cure, and to manifest that not a single kid has been forgotten.

Help us in our quest to find a cure!

Gene Therapy: For donations to this end, reach the Sofia's Cure Foundation. They donate 100% of their funds for gene therapy, and they have an anonymous donor that is matching whatever quantity they raise.

Animal Model: Reach Gwendelyn Strong Foundation's 200K for SMA project if you are interested in funding Phase Two of the first ever SMA pre-clinical animal model.

Virginia Vacation Getaway!

During the last weekend of July, Deedee and her family went on to Virginia Beach to enjoy a vacation getaway weekend won from the Joseph Lillo SMA Foundation for Children. This is a non-profit organization committed to raising awareness, and raising money for research and medical equipment for families affected by SMA and other disorders. Little Joseph earned his angel wings when he was just three months old because of SMA, and through this foundation his legacy of hope keeps on thanks to all who loved him dearly.

Deedee was lucky enough to win this family getaway, a contest open to SMA kids within the Tri-State area. From Friday 27th to Monday 30th, Deedee made this journey and savored every second of it... She fought sleep at all moments as she did not want to miss a thing! So, she got to travel the Chesapeake bridge-tunnel, stay at Dolphin Inn where she enjoyed a close-up-and-personal  view of the beach and ocean, visit Busch Gardens, visit Grommet's Island, and enjoy close family time with Mom, Dad and sister Kali.

This adventure marked a huge step for us all. Ever since our move from Puerto Rico to New Jersey, we had not ventured far as we had to be wary of Deedee's delicate condition... She frequently ended up in the hospital staying there for weeks. This is the first time we venture to a place that is beyond two hours away... Reaching this big milestone for our family has been priceless.

We have seen the bad and the ugly of SMA, but we won't let it stop Deedee. She has much to accomplish, and we are here to provide the tools so she can make her dreams come true. Viva la Diva! Watch out world! Our birthday girl will be 5 years old in two weeks! Take that SMA!

First 2 weeks of Camp at Newark Museum!

Deedee has so far completed the first two weeks of camp, with much success! We thought that her schedule for Summer (4 hours of classes) would drain her and not let her enjoy the camp... Boy, were we wrong! The girl is having a blast, doing her own crafts, and just had her return to stage. She surprised us with strong moves from her right arm and hand while using a paintbrush and while using her switch for playing Whack a Mole.

Viva la diva!

Hippotherapy, in process...

Deirdre had her hippotherapy evaluation. Although we thought she would not be able to pass the intake, she somehow did. We are all on the same page that she needs lots of physical therapy before any horse contact. The PT points out she has a high need for stimulation and movement, just doing. And so, the journey begins!

Now, the AMAZING part was witnessing a PT who held her upwards for over 15 minutes, managing her without fear, and having an empathy that we have barely seen. We were floored by how she took her off the wheelchair and positioned her sitting completely straight over a tumbler, making slight moves mimicking some of the riding moves... all the while holding her head/neck securely and with a confidence that we have not seen all this time from any of her PTs. And Deirdre was not scared. She looked surprised and calm, enjoying her surroundings as anyone else would. She did not desated, tolerating with 97-98 oxigenation and heart rate between 120-140. This was a WOW moment for us, and we know it also was a WOW moment for her.

After witnessing this we get reassured of the kind of things she should be receiving in matters of PT, and that sadly no one who has come to our home has done to this date (except for OT Maya and OT Gail who are at the other end of the rainbow as they are AMAZING). We now have certainty that our fight is well founded, and that Deirdre's services must improve. There is so much she can do, and only people who actually believe in her should be allowed to be around her... period. So... hippotherapy, and aquatic therapy if approved. Now we are certain we need to seek out PT and SLP services from real, confident and experienced professionals as they are out there. Main problem, of course, our insurance and its lack of coverage...But where there is a will, there is a way.

Hippotherapy intake evaluation

Deirdre's hippotherapy intake evaluation is coming up! Hopefully the PT will determine that she is able to get this specific type of therapy that could help her improve lung prowess and positioning for daily activities.

As a consequence of Deirdre’s disease, she is unable to stand, sit or perform stretching or walking exercises without proper help. SMA creates severe muscle weakness that hinders the ability to lift or move arms and legs, hold the head, swallow and talk.  Deirdre  must undertake alternative forms of therapies in order to maintain her already limited strength, mobility, and flexibility as well as to minimize the serious and costly medical complications which can result from such profound immobility. Based on medical data, Deirdre would benefit from a continued program of trunk and upper/lower extremity movement through hippotherapy. 

Hippotherapy provides a complex rehabilitation treatment. The multidimensional equine movement (which is variable, rhythmic and repetitive) achieves coordinated muscle movements in the arms, trunk and the legs, which will allow Deirdre to receive a therapeutic dosage of intensive diverse movement which she would not otherwise be able to obtain. 

Benefits of hippotherapy: Hypertonia prevention (muscle tightness),  enhances neurological and musculoskeletal functions and sensory processing, enhances postural control and trunk equilibrium, enhances speech and language skills, and improve social, behavioral and cognitive skills.

Prayers for our friend Nani

Please add this little girl to your prayers. Mariana (Nani) will have brain surgery soon to solve her problems with constant seizures thanks to West Syndrome.  Her blog is MARIANA GONZALEZ BLOG

Nani, we are all praying for you! You will be just fine!
Hugs!
Deedee, Kali, Vivian & Mark

In the middle of July...

 Good news:

1. Deedee's 1st week at camp was a success! Our diva has a busy schedule, but apparently she loves it.
2. Her favorite teacher is back! And so, she is a very happy camper. Eyes smiling every morning! 
3. We welcome a new nurse to our team, Nurse Maggie, a fellow boricua. It has been thrilling to speak in our main language for a change (our primary language is Spanish).
4. Preparations are going on for our vacation getaway. We are all excited about this award, a prize won from the Joseph Lillo SMA Foundation for Children giveaway for SMA families on the Tri-State area. Thank you guys!
5. Deirdre will soon have her official hippotherapy evaluation thanks to the contribution of some close friends.

Disappointing news:

1. Therapies clashing with Deedee's class schedule... and so far no SLP. Therapies for Summer have been cancelled from normal hours. It will be difficult to place them at what DoE calls "normal 8:00am to 3:00pm school hours" as Deirdre has a full morning and afternoon schedule. DoE fails to acknowledge her need for respiratory therapy/treatment every morning, which takes away 2 hour each morning... More days go into the chest of days owed by DoE for SLP, PT and OT. 
2. Denial for hippotherapy from insurance, basically claiming lack of coverage for that therapy and because it is in an out of network facility. It has been frustrating having to battle for things Deirdre needs now and that are not whims.
3. The Permobile Powered Wheelchair is still not submitted to insurance as we are waiting for a demo of fiber-optic control to decide if it would be better than a mini joystick... The wait has been long and by now beyond ridiculous. We started all this process in November 2011... and still nothing... Very bad customer service from our provider... we don't even get updates unless we push for them.

 In process:

1. Our diva's 5th Birthday Celebration! Yes, Deirdre will turn 5 years old on August 17th,  and we declare the weekend that follows her birthday a Divalicious Weekend Birthday Bash!
2. Deirdre's new Bantam Stander was approved... maybe will arrive by her birthday...
3. Make a Wish will make Deedee's wish come true just around Fall's end. Stay tuned for more details!

SUMMER 2012

Disappointing news:

1. Classes began last Thursday, but DoE has not sent a teacher yet...
2. Therapies for Summer have been cancelled from normal hours. It will be difficult to place them at what DoE calls "normal 8:00am to 3:00pm school hours" as Deirdre has a full morning and afternoon schedule. DoE fails to acknowledge her need for respiratory therapy/treatment every morning, which takes away 2 hour each morning... More days go into the chest of days owed by DoE for teaching, SLP, PT and OT. 
3. Denial for hippotherapy from insurance, basically claiming lack of coverage for that therapy and because it is in an out of network facility.

Good news:

1.  Camp at the Newark Museum began on Monday July 9th. Deirdre is very happy about it, and already looking forward to more fun stuff. Since she only attends in the afternoon, she gets all the crafts done in the morning at her peers naptime. The diva won't miss anything.
2. Deirdre won a vacation getaway of 4 days that soon will come into effect. We are all excited about this award, a prize won from the Joseph Lillo SMA Foundation for Children. Thank you guys!
3. Deirdre will soon have her official hippotherapy evaluation thanks to the contribution of some close friends.  

 In process:

1. Summer promises many exciting things, and it will close with our diva's 5th Birthday Celebration! Yes, Deirdre will turn 5 years old on August 17th,  and we declare the weekend that follows her birthday a Divalicious Weekend Birthday Bash!
2. Make a Wish will make Deedee's wish come true just around Fall's end. Stay tuned for more details!