Will I Ever Finish This Post....

I started writing this a week ago.  Then got busy, which is probably good because I changed the whole thing:)

**Scratch that...Lets try this again....I am now over 2 weeks past, because Patrick decided to catch a bug and was sick for several days, in the midst of the epidemics and weird viruses going around, along with a mother who is narotic....bad combination.  Needless to say...he is slowly on the mend and feeling better.  Now back to what I was originally trying to tell all of you....

Last Thursday we were at U of M, getting a video EEG done.   The week before, Patrick had an episode at night, where he jerked out of sleep.  He has done this for as long as I can remember and they have not been able to pick up any seizure activity from them, in his previous EEG's.  But last week's was a little different.  He startled a few times in a row, with about a 5-10 second pause in between each jerk.  It only lasted MAYBE 1 minute.  But he would cry after each time:(  This was definitely new.  So we called the neurologist and he said they are moderately suspicious for seizures, and he wanted to do an EEG.

This is what that day looked like:

  Why are you making me wear this??

Cant stop me from playing my piano

He is the best!

Seizures are common in PKS, so its not like we aren't preparing ourselves for them, but at the same time, we dont WANT to go down this road.  We know the odds are pretty good we will be at some point, but we still hold out hope that maybe we wont??

So Tim and I, took Patrick to the neurologist, whom I adore, to get the results. Based on what they saw on the EEG, Patrick is not having any abnormal brain activity at all.  Not while he is sleeping or awake, and he did startle awake while he was there.   We were very happy to hear this.  The doctor did say that he doesnt know for sure if Patrick did or did not have a seizure that night or not. But he has not had any sort of startles since then, so we all decided on a wait and watch approach.   We didnt feel that medication was an option, seeing as his EEG was clear and we dont have a confirmation of a seizure that night.  If we see anything again, we will not hesitate to put him in the hospital for long term monitoring.

My sweet boy

I love his doctor's approach and calm way of explaining everything in detail to us, along with the fact that he is knowledgeable with PKS.  He is very honest and realistic and valued our input.  And I was super grateful for having Tim there.  2 sets of ears were so much better, especially after we left and I needed to review EVERY SINGLE DETAIL in my head of what he said;)

So we watch and wait....and for now...no seizures:)

So this all started in the midst of us trying to get Patrick acquainted with his new friend: the sleep apnea mask.

Our house looks like we are selling sleep masks on the side.  We have so many different types.  It is quite ridiculous.  My neighbors are probably wondering why the MedEquip guy is always at my house.

This is what it looks like:

Sleeping on our floor for a while until he gets used to it.

But my poor little guy has practically no nose bridge to hold it in place and he has a a fairly big head, which we all know he gets from his father.  So it can make things challenging when finding the right fit.

Tim also likes to call him Bain from the Batman movie, because of his mask. So every time we put it on, we have to listen to Tim recite lines from the movie......we are mature people...really.

I feel like I have a new born baby again, with the constant getting up when he tries to pull it off, or if there is a leak.  For some reason though...Tim wakes up so refreshed in the morning...like a Foldgers commercial. Again just like having a newborn in the house.  I kid, I kid...

We are going to start him on some melatonin to see if that helps him fall asleep and that should help with the mask.

The next big decision which has come up in the last few days is whether its time for a wheelchair. I have to be honest, I am actually having a little bit of a hard time with this one.  Can't really explain why yet.....But we have had to adjust his modified stroller a few times in the past few months due to his growth.  So we have to decide if we want to do a wheelchair or stroller....I will explain this in more detail later.  But with this comes the modified minivan discussion. Which if you've ever looked at the prices of those.....because I know all of you surf the web checking out the latest pimped out handicap vans...my PKS family can relate;).....they arent cheap.  But I will talk about that more later.

It's exhausting being me:)

But through it all....my boy is a champ.  He is just plugging along being Bubby.  Such a cool kid:)  He still amazes me everyday. When I went to his school yesterday, he was riding around in his tricycle, looking all cool.  He looked up at me and his face was like, "Oh hey Mama, just riding my bike."  I am so happy that he loves school!!

Oh and....those other 2 kids....
Avery and Jameson are doing great.  Avery is loving school this year.  She is learning about World War II, which she finds interesting, so then Tim and I get the same exact lesson(word for word) when she gets home:)   She is still playing softball and becoming more confident and improving so much!  Her braces are now on the top and bottom teeth.  She's looking good:)

I've been kind of homeschooling Jameson with numbers, letters, cutting paper, not eating glue...ya know...normal preschool stuff.  He's doing great.  But his speech is still delayed, so we will be working with Early On for some speech therapy. Although he can scream," Tim" very clearly through the house, or say,"damn" while riding in his carseat....so weird.

 Zoo trip with Phoebe:)  These pictures crack me up!

Thanks to our wonderful supply of babysitters, Tim and I are able to get out and play softball together once a week and show off our mad skills with our awesome team:)  Yay us!

Here are some pictures from our trip to the pumpkin patch during the rain and before Jamesons meltdown over having to share the steering wheel of the train with another kid.....2 year old problems ;)

 Oink

 Moo

Such a good daddy...and cute too:)

Random pictures for the day:
Here is our friend from the summer that was living on our deck.  She is close to dying now:(  But she was HUGE and fun to watch spin webs...

Then there are these 2 cuties:)

Thats all for now.  Thanks again for supporting Patrick and us:)
xx
A