I think it's time for an update considering so much has been going on and changing. I am so very proud of all the progress and hard work jojo has done. He has such an amazing team right now (it can change at anytime so I appreciate it so much) every successful session is so much more than just Jojo and a therapist, its a family effort. Its Jay and I actively being engaged in the moment and the Kids helping out and sometimes even doing the activity with Jojo. Its an all day thing. We learn from the different therapist and then as a family we ALL help carry it out into our day.
He has started stacking blocks, playing with toys appropriately about half the time, eye contact is so much better, he is babbling more and more, has said yea, whaaaat, go, maama. We hear these words very sporadically. Im so happy he is trying. Some days he kinda zones but then he tries. Every little word he babbles and block he stacks makes me smile and cry. The tears nowadays are of gratefulness for getting to a good place. Seeing progression is beautiful
Jojo has had a lot of medical tests done. We had complete blood work and chromosome array testing done last month. This was the hardest thing my sweet baby has been through, he was so scared of the entire process. As soon as he figured out that we were in a procedure room he flipped out. Well the tech was obviously shaken by his screaming and after 3 ATTEMPTS my hubby tells her to stop and get the hell away. I was shocked because I am the emotional one but this was pretty much ridiculous. We left and no blood was drawn. We ended up taking him to his pediatrician's office and they did the draw in a few seconds. I was so glad it was over with!
During the next two weeks we waited for results and also had an EEG test done to rule out seizures. This test was hard because of the way he had to keep his head still. With mommy and daddy literally holding him down the test was completed! ! Now, more waiting.
We carried on with the normal schedule, jojo is doing about 15 hrs a week of aba styled hab work and 2 days of speech therapy and OT is coming back on board soon. A few weeks ago we got the calls from the neurologist and lab. The EEG came back clean-no detectable seizures! Blood work was normal, thank goodness. Then he dropped the bomb. Jojo has a break in his chromosome number 6. The more techy term is a micro deletion at 6p23.1 at 459kb. Yeah its complicated but it means that you cant fix whats broke. Means I have a reason for the autism. Also means a whole new worry. Chromosome 6 disorders are extremely rare. There is not much info to go off of. I have found a few online supports and have taken in as much as I can. The final diagnosis from the pedi neurological exam and testing is now: Autism, Global Developmental Delays, Cognitive delays, Encephalopathy (nonspecific brain disease) Since im on a roll I want to note that despite all the Big Word disgnosis I am still going forward with the AAC language through motor planning technique. Its my best hope for a form of communication. He is trying to talk each day. During a puzzle building exercise he blurted out,"I did them!" Team jojo in full affect and always ready for the next adventure. Love you Jojo
No comments:
Post a Comment