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!