Neighborhood friend and total mom inspiration Eliza Factor is opening an incredible place called Extreme Kids. It's a space for kids with special needs and their families to have fun and be kids. I have mentioned Eliza before because she has been a beacon for me to follow towards finding peace with Lula's condition. I've sung her praises before. Extreme Kids has new digs and we went to check them out on Sunday. It's a fantastic space complete with a ball pit and an incredible therapy swing. While we were there her son Felix graciously let us crash his private session with a very renown OT named Huck Ho, the director of a therapy center in Manhattan called The Smile Center.
Huck is a world of advice and information. I actually have no photos to accompany this blog entry because I was furiously transcribing everything he said into my phone. It was a little overwhelming - he rattled off exercises and techniques, suggested additional tests and assessments and therapists. He told me that Sam and I should start looking at schools for Lula for when she turns 3! Oy. Lula's OT Loreto, who is an incredible therapist as well, joined us to get pointers from Huck. It was on her own time, on a Sunday, with no pay. They discussed techniques, additional therapies, adaptive equipment, everything.
The thing that's so amazing about therapists is that there is never a question of whether or not your child is worth the effort. There is always room for improvement for everyone, no matter what their issues. There are no DNRs in therapy. Some days the only thing that keeps me going is when a therapist says "Lula did awesome with her therapy today". Of course they don't mean "Lula suddenly caught up and is walking", but when she works her hypotonic little tail off the therapists take notice. Waleed, Lulas PT, told Sam last week that we should really buy Lula shoes so we can get her ready to walk and my heart soared at the thought. She can't hold her head up still, but he sees potential where others see nothing but defecits.
We are about to get a new feeding therapist after much wrangling and (as usual) me being a thorn in the side of EI bureaucrats. I hope she is good - the previous FT was great but Lula is still eating almost nothing by mouth. Feeding is the trickiest of all and has been the most fraught for us, but she will be getting FT 4 times a week in addition to her PT 5 times a week and OT 3 times a week. I don't know how we will ever find time to leave the house, but I am not complaining. The more therapy she gets the more chances Lula has to prove the doctors wrong.
|Lula and Lisa (Bye Lisa we'll miss you!)|
|Lula and Loreto|
|Waleed employs an assistant|