Updates! ABA, VNS, Hydrocele, CNA

Hi! Wow! How did almost a whole year go by and I haven't written anything new? Have we been busy? I guess. Aren't we all?

It's January. Ugg January and February: My two worst months. I have been feeling the winter blues coming on pretty strongly. It doesn't help that my little Willie has been constantly sick with one thing or another since September. At least Christmas is over.

Right now Will has a mysterious set of symptoms that have been nagging at me and I just feel like there's something wrong. He's tired all the time. He hasn't been eating much. He's super bored and hard to please. Maybe he's feeling the winter blues too. I just don't know. I fantasize about moving to a warmer climate all the time. I love Colorado so much all other seasons, but winter is not for me. I'll just keep dreaming.

Will has been keeping busy with preschool and his ABA therapy five days a week for two hours each day. ABA stands for applied behavioral analysis. He is starting his 4th month now and he is doing very well over there. They have now got him using a spoon and fork to eat. That's nice! He's not very consistent with it at home but he is good for the therapists. His main therapist there told me she loves working with Will because he is a 'learner.' I'm glad.

Last August Will had a vagus nerve stimulator (VNS) implanted into his chest. This is sometimes recommended for certain types of seizures in intractable epilepsy. Intractable meaning uncontrolled with treatment. Will failed a number of different meds and was suffering from side effects from them. I was uneasy about this decision but now I'm so happy we went this way for Will. At the time he had it implanted he was having 20-30 absences a day. Now at this point we are seeing one or two a week! It is very fantastic. The VNS is comparable to a cardiac pacemaker but for the brain. The device is implanted in his left upper chest. It has a wire attached to it that is coiled around his vagus nerve. Every 5 minutes it 'goes off' for 30 seconds with a certain level of electrical current into his vagus nerve which goes up to his brain. I can't even really describe how it works, but it does. It's worth reading about if you have the time and interest. We can hear a vibration in his voice for the 30 seconds it goes off. It doesn't wake him up at night. I think he is now very used to it and doesn't notice it at all. The only side effect he is having from it is he has a hard time swallowing his saliva sometimes. I'm not sure this will ever go away. Maybe. All in all I'm happy we made the choice to do it. One day we may be able to wean him from some seizure medications. He is on two heavy meds still.

Another thing Will has going on is he has a hydrocele 'down there' haha. Please feel free to look it up. I won't get into it too much, but he's had it since November which prompted an emergency room visit. In the ER they did an ultrasound and confirmed the hydrocele which was likely from trauma. He basically racked himself really hard. The doc there told us it would go down on it's own and to treat it like a bruise. Well here we are two months later and it hasn't changed. In fact, tomorrow I'm taking him to the urologist to find out what's going on. I'm 90% sure he's going to need surgery. Yay. I'll keep you updated on that.

The last thing I wanted to write about is how I got my CNA license in October to be Will's parent caregiver. I wanted to write about this because it's a little bit of a controversial topic. When Will was 10 months old I quit my job to be with the kids more. Then a few months later I started taking him to therapy all the time and it really worked out for me not to work. I'm so deep into it now that I don't know when I would even have time or energy to work. Yet, I know people do it all the time. Now, Mickey has a really fantastic job with benefits and all the good things. However, it's not always easy to make ends meet. Well a friend of mine told me about this program Medicaid has. There are only three states that have it in the US. Will's situation was assessed and he qualified for 4 hours a day, 7 days a week of assistance with activities of daily living (like feeding, bathing, dressing and grooming, diapering, therapy activities, among others) and with his severe language and comprehension disabilities he was given these hours. Now, I could hire a CNA from an agency to come help me with these things or I could do it myself and get paid. Umm, not a hard decision.... So I took the CNA class and passed the state test and am now a CNA. I learned some helpful skills and feel like I can do more for Will and keep myself safe as he gets bigger and ever more physically challenging to control. The idea is to keep children out of state-funded institutions and at home with their loving families. It's really a nice program and I don't see why there aren't more states that do it. I love Colorado and take back what I said about winter earlier. :) It's all about perspective right? The reason I said it's controversial is because I have had a couple people say to me: 'so basically you're getting paid to take care of your kid?' Umm yeah I guess.... I mean: NO! There are so many people out there who do not understand the level of care special needs children need. Will is almost 5 now and the things I do for him are the same things I did when he was an infant, yet he is 5 times heavier and 3 million times more stubborn. Arrrrggg!!! I'm not well spoken and confident enough to say all these things in person so I'm writing it here to clear the air for myself. So anyway, I'm pretty happy I'm doing this and feel like it's already helping with finances.

Well, hopefully it isn't another 11 months before I write again. I have a list of things to write about so maybe this will start that fire under my booty to continue tapping away at these keys. Thanks for reading.

Dream

I just woke up from a dream where Will could talk and we were discussing soccer and cats in great detail.

I wish Will could talk so bad. What I wouldn't give to have a conversation with him. He's almost 5 now.