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.