Wednesday, May 26, 2010

Over It

Joaquin has another evaluation coming up for his Early Intervention services so all his therapists are doing their 6 month evaluations on him and letting me know where he falls on the spectrum as far as his abilities or lack of abilities. One of our teachers from Easter Seals was asking me all sorts of questions like how many words does he say and how many words does he sign. I told her "a bunch". She wanted a number. I told her I don't really count them but he has a lot and we are happy with his progress. Again, she wanted a number. I told her I really don't know and I really don't care to count them out. He's behind for his age as far as his typical peers go so why does it matter what number of words he says.

Can you tell I'm over it?

I really am. I love Joaquin. He is amazing. He does amazing things and he does them on his own time. He is progressing and he is improving all the time. I don't see the point in putting a "number" on it. I KNOW the therapists have to do this in order to justify his therapies and I UNDERSTAND that, I'm just over it.

I told the teacher from Easter Seals put whatever number or age range you want, it really doesn't matter to me. I'm happy with where Joaquin is at right now. She was SHOCKED! She said so many parents want to know exactly where their kids fall in the "typical" range and these parents keep very close track of it. I don't. I don't keep Joaquin's therapy notes. I read them and then I toss them. Sorry. I live a lot of my life in the moment and I don't like to dwell too much on things and maybe this makes me a bad parent. But I don't think I am. Joaquin gets over 6 therapies a week and I make sure he gets to all of those appointments and he rarely if ever misses them. I read to him, sing with him, sign with him and play with him all day every day. He is surrounded by his two big brothers every day. He is in our community every day socializing with my friends, his brother's friends and his own friends. He gets loved on by his grandparents almost every day. He's pretty integrated into our lives I would say. And for the most part, besides those 6 hours of therapy a week, he's just my normal child. Sure he's over 2 and just starting to walk, that's ok with me. He's going to walk, run and jump soon enough. Sure he's over 2 and not talking in sentences, but he is communicating and he is getting most of his needs met through his signs and limited words. He will continue to improve on this with time.

Again, I may be in for a huge reality check when it comes time to transition from IFSP's to IEP's but I know my child and I know how to advocate for him so I'll cross that bridge when I have to.

So, when it comes time for these 6 month reports, I just simply get through them, nod my head, make sure Joaquin gets the services he needs and then move on. I do not even care to hear where he falls on the spectrum...I just don't. Like I said it doesn't matter to me. I'm over it.

Ok...thanks for the vent.

Thursday, May 20, 2010

Pirate No More

I called Joaquin's eye doctor today to get some advice on what to do about our patching prescription of 3 hours a day. Ever since we've started patching, Joaquin's good eye has started turning in a lot and his strabismus has gotten much worse. I was fully expecting to hear that we needed to continue or maybe to alternate patching on each eye.

Well, they are giving us a "patching vacation". She said that it's an excellent sign that Joaquin's good eye is turning in now. She said the brain is now switching to using his "bad" eye more than his "good" eye and that his sight has most likely returned in the "bad" eye.

She'll see us again in July and reevaluate. Sigh. Okay.

P.S. Above is a photo of Joaquin with his buddy Sheridan who is having open heart surgery next week, please say a special prayer for him and that he recovers quickly and is back playing with his buddies as soon as possible! And see this very special quilt we had made for him at Monkey Musings. We love you Sheridan!

Thursday, May 13, 2010

Monica & David

I cannot WAIT to see this documentary. It won Best Documentary at the Tribeca Film Festival. ANYTHING is possible for Joaquin...and Sofia...and all their peers! I cannot wait to see what the future holds for Joaquin and for Sofia.

Monica & David

Monday, May 3, 2010

Update on "Joaquini"

My little angel boy is growing up. He is consistently standing on his own and taking 2-3 steps without prompting. With prompting, he is taking 5-8 steps. He may be walking by the time we return from Ukraine in a week. It's so exciting and I can't wait for him to take this next "step" in his development.

On another (more disturbing and shocking) note, my mom took Joaquin to see the eye doctor last week since we were in Ukraine and didn't want him to miss this appointment. We've been waiting over 9 months to see this doctor. Pediatric opthamologists are few and far between. The last time we had Joaquin's eyes checked, his vision was excellent and he had a strabismus that we were addressing with patching periodically as needed. His strabismus has slowly improved with time and when he started creeping on hands and knees, it was improving even more. He has excellent vision as far as we knew because he can make the sounds and signs of different animals and objects when looking at their pictures and he never runs into things or stumbles and he seems to know and "see" exactly what he wants to. He loves his Signing Times videos and also imitates those while watching the TV and it never appeared that he was using only one eye. So we knew he could "see" and weren't concerned too much. We were just eager to hear what the specialist would say about his improved strabismus and see what else was new with his sight.

Imagine my surprise and shock when I got an email from my mom that the doctor said Joaquin is almost BLIND in his left eye. WHAT?!?!? So the specialist recommended immediate patching of the right eye for 3 hours per day for 3 months to see if he can regain any sight in his left eye. Shock...that's all I felt...shock. When did his excellent vision deteriorate when all we saw was progress?

So my mom has been patching Joaquin religiously since then. What is very interesting is that even when patched, Joaquin can see. He gets around just fine, doesn't bump into things. He watches his programs and looks at his books. He does everything he normally how is that blind?!? We will continue to do the patching and I am VERY eager to go to the next appointment and try and figure out what is going on with Joaquin's sight. I have a million questions and I will NOT miss this appointment.

I feel horrible about all of this. I feel responsible. I don't understand how this happened. I just want the best for my boy and will do whatever I can to help him. So I'm hoping and praying that his sight will be regained in his left eye. These things we take for so crucial and seem even more so when the challenges are already stacked against my little guy.

Love you "Joaquini"!