Sunday, June 23, 2013

Time for an Update!!!!

So lately it's been crazy at our house.  With preschool finishing the week before last I've had my hands full.  Little Man is having a hard time adjusting to not going to school and every morning he's been asking if he's going on the school bus, I always have to tell him no and that soon school will start for him.  He is going to be attending the summer program that starts July 30th for him and will last 3 weeks.

So back in May Precious Butterfly went in for a Brain MRI, to rule out Tuberous Sclerosis and a left frontal lobe abnormality; I can say that the MRI was normal. 

Also the same week Little Man had his overnight EEG, it was an interesting trip for him and me.  Yesterday we got the results of the EEG and I am relieved to say that it was normal and he has not had any seizure activity within the 2 weeks prior to the test nor did he have any during the test.  The doctor did tell us that it doesn't mean that he doesn't have them.  We need to watch for his staring spells and if he has one we need to stand in front of him and take our pointer finger and bring it to touch his nose.  If he reacts that's good, but if he doesn't we have to call the doctor immediately.  I can say with certainty that he doesn't have them that frequently and I just have to watch him closely.

Two days later I went back up for Precious Butterfly's overnight video EEG, unfortunately I don't have the results yet.  We find them out in July.

We've also seen the pediatric ENT for Little Man back at the end of May and he's having surgery next month.  The doctor is going to scope him and if there is an anatomic abnormality he'll fix it, he's also going to check to see if his adenoids have grown back and remove them if necessary.  If he does have a repair to do, we will be spending the night in the PICU (Pediatric Intensive Care Unit) we won't know until he starts the surgery. 

Yesterday we got the results of his blood work too.  Most of it was okay, but due to 2 different chromosomes having duplication mutations we are being referred to a pediatric geneticist to discuss the results form the Mircoarray Analysis.

We also had a lengthy discussion about his behavior and what to watch for.  He gave us lots of ideas for distractions when he gets in a mood.  I also have to create a strict schedule for him because he needs the structure due to the Autism.  He also said as a way of communicating with him is to create a picture book and have him flip through it to tell us what he wants.  So all day yesterday I was searching for pictures and I finally got a free 30-day trial of Board Maker.  I did lots of printing in black-n-white and spent most of last night coloring the pictures and a good chunk of today coloring the pictures I've already printed.  I made a list of pictures I still need to print and I'll be up late tonight finishing his picture book and his schedule (we spend Sundays at my parents' house and my laptop is at home so I can't even print anymore pictures or start creating the book since everything is at home).  We also discussed the school district and his doctor is not pleased with them and their handling of him being Autistic.  He is really angry that they are essentially not communicating with us regarding how they talk to him so we can enforce it (we are having lots of tantrums at home).  They also haven't been very helpful all around I guess because they are refusing to increase the frequency of his attendance due to them finally changing his IEP from developmental delay to Autism, they aren't even offering him additional services that he could probably benefit from.  He also said that an iPad would be good for him since it's been proven to help Autistic kids; we don't have an iPad nor can we afford one.  So thankfully my mom wanted to upgrade her Kindle Fire to the Kindle Fire HD, she's given her Kindle Fire to Little Man to use and I have to get him apps that will help him not only communicate with us, but help avoid tantrums/distract him from something he can't have.  We are hoping that Family Support Services can assist with additional help and possible help us secure an Autism voucher to get an iPad.  If we can't both hubby and I have decided that next year for our tax return we'll each get an iPad not only for ourselves, but also to help eliminate having to need the picture book when we're out and about and we need to communicate with's a lot of stress that I feel at this point because he needs help and I cannot get him all the help that he needs nor can I afford everything that he could benefit from.

Trying to do play dates is not happening due to none of my friends being around nor available.  I've found that I always have to reach out to my friends, none of them ever reach out to me.  It's gotten to the point where I guess it doesn't matter because I have my hands full with both of them and we're still trying to adjust to everything and figure everything out.  I haven't even had a chance to read any of the tool kits from or anything because I am so tired after they go to bed.  I hope to get a chance to read them soon because I cannot keep feeling clueless because I haven't been able to read.  I've joined and talk with other parents that have children with an ASD diagnosis.  I am still trying to get my bearings, but I just can't wrap my head around everything due to not being able to sit at the computer and read/research everything I need.

SO...Precious Butterfly hasn't been herself lately...she's gotten more temperamental lately and I am having a hard time understanding why.  I know that both kids aren't sleeping well so maybe she's just super tired, but it's every single day she has multiple melt-downs that are lasting for over 5 minutes some as long as 10 to 15 minutes's very draining because Little Man is having them too.  Lately she's been thrashing her body (just like him) and I do everything I can to keep them both safe, but man does it hurt when they hurt me.  Her behavior alone makes me think that she might also get an ASD diagnosis...I guess I'll have to wait and see. 

Until next time.  Have a great week!