Vacation & Joseph's EEG Test

This past week was one crazy week for us. I took vacation Tuesday-Friday off work at first was for Jason and I to celebrate our 15th wedding anniversary but life had another plan for us. We had planned to rent a cabin for the weekend and get away at one of our favorite places to go, Lake Camanche. We have always loved going fishing and anywhere there is water, it is so peaceful and really helps you get a grip on reality and what life is all about-Our Family. Especially with Joseph's therapy schedule we really needed this. Well, some things happened at work and what I had originally planned for my vacation days was changed so we decided to cancel the idea of the trip to Lake Camanche instead I was going to look forward to some major relaxation and pretending I was a stay at home Mom at least for a few days.

The week before my vacation I had pulled up Joseph's report from the Mind Institute whom diagnosed him with Autism, mixed developmental delay, and Echolalia because I had remembered something about him needing to be referred to another specialist I just couldn't remember whom and why. So I figured it out and he was supposed to have a referral to a Neurologist to rule out any relation between his Autism and his reflux medication he was on as a baby, Reglan. (Read previous post for the details of that appointment). Long story short, Joseph's pediatrician never even put the referral through which to me is just a bit suspicious being that had there been a relation between Autism and Reglan he is the one whom prescribed that medication. I am so thankful to God that it came out to be no relation at all because I don't know how I could have lived with myself. I don't think I would have ever forgiven myself of that.

If you read my previous post you would know that the neurologist wanted Joseph to have an EEG to rule out what they call "Silent Seizures" it doesn't look like a seizure but just like a blank stare for a few moments then back to normal. The doctor thinks Joseph may be having them in the middle of the night or possibly during the day but we just are thinking it is him "spacing out" for a few moments. When talking about it with Joseph's speech therapist, Monika this week she told me it is so hard to tell if that is what is going on because some of the signs for "silent seizures" are the same for an autistic child. So on Thursday morning I got a call to schedule Joseph's EEG and they wanted us there in a few hours at 2pm. Funny how things work out because Joseph had therapy until 1pm and the drive to Roseville where the appointment was about 1 hour so we got there just in time.

Due to Joseph's age and lack of understanding they had to Papoose him which is a nice way of saying "Constrained" and he literally screamed and cried the entire time which was so hard for me. He repeatedly kept saying "All Done, All Done" it was literally breaking my heart. They had to place wires at certain places on his head and glue them and dry each one individually and they placed about 10-15 wires plus 2 heart monitors. I kept telling him he was such a good boy and was doing an great job over and over and he finally calmed down and said "I did good, I did good" in the saddest voice I ever heard come from him. But in all that I realized how in the world did he come up with those words, he has never said those 3 words, granted he heard me saying "you are doing good" but for him to turn it around and speak of himself I was amazed. So little Joseph for the next 24 hours had to wear the back pack on his back and carry around the device tracking his brain for seizures.

During all of these I was rushing between doctor office visits and therapy appointments I honestly felt like I was loosing my mind. Well I did because by the time Friday came around I completely had forgotten about our wedding anniversary, I had it all planned a girl from work was making us a red velvet cake (yummy) and I was going to do this special photo collage of us from our wedding and now and have the frame engraved. I spaced about picking up the cake and by the time I realized there was no way I could pick it up in between therapy appointments and going back to the hospital to get the EEG taken off of Joseph. Luckily I have the sweetest husband and he understood and his feelings were not hurt at all. So this week that is my goal to get that photo collage put together some how I will.

So that was pretty much our crazy week. We took a few hours yesterday with no cameras and only Jocie's phone and went to the river to just relax and spend time with Jason and the kids. It was so nice and Joseph did great. He loved picking up the rocks from the water and throwing them and didn't try and run in the water, it was like his sense of fear is starting to pick up which is great because he has always been fearless which is scary.

So all in all it was one "Hectic Week" to say the least. We have to wait 1 week for the test results of the EEG and Joseph's MRI is scheduled for next month. I am hoping the results are negative but am expecting the worst that way I won't be disappointed and I know that what ever cards we are dealt we will get through it one day at a time because I am a survivor of all things and I fight through what ever we are given and always come out on top. So maybe one day we will get back to what some people call a "normal life" but if not I am willing to accept our current life as our new "normal life".

Wishing everyone a fabulous week and just remember you can conquer anything as long as you put your mind to it and honestly what I do is pray, yes a simple prayer can go a long way. I don't pray for Joseph to be cured or for him to speak but I pray that I can obtain the knowledge I need to help him be successful and I pray for the therapists and tutors to have this same knowledge.

Knowledge is Power.

Jenn

"Tickle, Pickle"

"Gymnastics" (We went to a birthday party last weekend at a gymnastics studio)

Here are some pictures from the past week