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.