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.