In case you haven't heard, its been cold here in Georgia. I think that the cold has decided to touch every corner of the U.S.A this winter. I'm thawing out and recovering from the holidays and thinking a lot. I'm hoping to make some changes in the near future. I have been putting off writing all of this down. Once I start, it may be hard to stop.
Manny went to Dalton Ear, Nose and Throat on Wednesday (1/6). I think that I pretty much flew through the holiday season riding on a magic carpet of hope that this appointment would go a certain way. Well, I didn't fly THAT high, because I was still a ball of stress that ran from as much reality as I could, but I take what I can get. I began to believe that maybe Manny's regression and delays coincided with our long season of illness last year, where Manny lost so much weight from virus after virus. That this illness had possibly caused some ear issues, maybe even inner ear issues, explaining his ataxia, and hearing loss, explaining his speech regression. That it was possible that all he needs are tubes in his ears to release some of the negative pressure that the hearing tests were showing (well, might have been showing.. but he wouldn't be still)... and he will be able to miraculously recover and with a little bit of speech and OT, he'll begin to speak and develop normally. I forgot to worry about other things I was noticing, I tried to believe that everything would be fixed once they fixed his hearing, that I suddenly thought for SURE was the main issue. The Hemi/Onc DID say that sometimes people have NF1 and NEVER know it, even with tumors. Doesn't that mean that the ataxia, speech regression, and the discovery of the tumors might all be coincidence, and unrelated to each other? It all made SO much sense, if you thought about it.. really hard, and forgot about the physical and muscle tone regression, milestones not being met....but I digress. Back to the real story.
Dr. Dingus at Dalton Ear Nose and throat was so very nice. His staff were some of the nicest people I'd ever met. First he pulled a big hunk of wax out of Manny's ear, ick! He assured me that it wasn't causing any hearing issues, and probably little if any discomfort (dangit.. I was hoping he'd say "this is probably what keeps him from sleeping every night!"). He then handed me over to his technician who tested negative pressure. Very little, if any, was detected (I guess lots of negative pressure would tell us if he had fluid that could be relieved with tubes, no such luck). Manny had a complete melt-down after his initial exam, and I tried a few different positions in the carrier and he finally went to sleep. The tech was able to do a test to check his cochlear function without sedation, thank goodness. It was fine. His ears, physically, are functioning perfectly. I'm supposed to be happy about this.
(ETA: I wish I could remember the tech's name (she may have been an Audiologist.. but I forget everything, I hadn't slept that night). She was so sweet, a nice redhaired lady if you ever come into contact with her. She kept asking me if we had checked this or that or had this or that test done, and seemed surprised that he was so old and that we had not . I finally said "I constantly run into professionals that ask me why we haven't done this or that test... only 6 months ago we heard the word 'brain tumor.' Please forgive us because we're doing the best that we can." She put her hand firmly on my shoulder and squeezed and said "I know you are, I didn't think of that, and I think you are doing fine. Please know that I meant no criticism." I haven't teared up so far in the writing of this post, but I'm tempted now. Its so nice to run across people who are sensitive and compassionate. What a nice place.)
Dr. Dingus dismissed us with a prescription to have another test run, one to check to see if the brain is receiving the information when Manny's ears hear. Manny would need to be sedated. I can go back to Scottish Rite to have this test run. I don't think that it is necessary, however, what am I to do?
Why don't I think that it is necessary? I think that Manny is autistic, like his brother. I finally allowed my conscious mind to be hit with this news on Thursday night while we were having dinner at the Mexican Place.
Even the two or three words that Manny held onto have long gone. He still says "tickle tickle".. sometimes, and a low "chgghchgga" when he plays with trains, but other than that, even his sign language is completely gone.
He has begun to lay in the floor on his back and either stare at the wall or "nothing" or play with one particular kitchen object (like brother). He rarely makes eye contact and is oblivious to his surroundings. He doesn't bring things to show them to us, and would rather lay in a corner and bang his feet on the wall. When he's not engaging in solitary behavior he wants to be held tightly like an infant.. and little in between. Lately I've started to grasp at straws and try to get him to make ANY social engagement, and can get him to do a certain tongue-raspberry type game with me, but that is it. I tend to say to myself "oh no! there he is! I was wrong" but I know better now.. these are just glimpses of "normalcy".. false pieces of hope that I've been seeing with Jake since he was little.
Why did my heart sink AT the Mexican Place? I realized right then and there.. this is it.. this is autism times two. A little baby girl came in, 18 or 19 months old, two at the oldest. Her mother put her in the high chair and said "put your bink on the table." She complied. Then the little girl pointed at the diaper bag and said "ippy! ippy mik!" Her mom gave her the sippy of milk. Then Manny screeched and she turned her head and stared at Manny. I waved and her and she waved back and smiled. I tried to show Manny the baby... no dice. He just wriggled and tried to get down. He's never waved at another baby. Jake is learning to do it. He's also never followed a direction, ever.. not "put that down" or "go pick up the...". Nor has he ever pointed at something, named it by name and asked for it. At this point even his sign language is completely gone. Manny is 28 months old and has the capacity of a 10-12 month old in almost every skill, speech, gross motor, fine motor, and social, and is regressing.
Autism would explain Manny's regression, and the fact that none of his issues can be physically explained by his tumors or his NF1. It would also explain why he is so very very delayed compared to other children who are only affected my NF1. He is at "the age" where many children who develop normally until age two, or who show very mild global delays are often seen to suddenly exhibit more and more symptoms of autism. Male siblings of children with autism have a 1 in 3 chance of being autistic. 1 in about every 5,000 people have NF1. I should probably buy more lottery tickets.
Please don't tell me what a great mother I am, I haven't been doing a good job at all. I yell at my kids, I whack them from time to time... I have no patience. Me, someone who has always wished I had the patience for homeschooling, is praying for the heat to be fixed in Jake's building so that he can go back to school. I'm on a mission to lose weight, even though that taking care of that will take even MORE of my time away from my family. I ran fast and far from "The Holidays" and almost succeeded, though its left me with more guilt than I can handle. Manny is getting exactly NO services from Babies can't Wait.. I haven't heard from the OT in 5 weeks. I love my husband, but I am having a terrible time giving him anything but a stressed out crazy person.
Thank you, family, for our gifts this season. I have grand delusions of writing each and every one of you with pictures, but please don't hold me to it.
Since this is the blog-post that never ends.. Here are some pictures from today. It was actually one of the most pleasant days we've had lately as a family, doing what we "used to" do, before everything went to hell, everybody got sick, everybody got pissed of, and everybody needed a doctor's appointment every week. We headed out towards Lafayette, and went to a spring covered cave entrance. Jake was extremely upset that we weren't going swimming (it was 20 degrees) and tried to undress right there.
I've been planning this post for a couple of weeks, and it didn't come out nearly how I wanted it to. I cried a LOT just putting my thoughts together, and almost not at all writing this.
