We have been BUSY...

And thats to say the least... Busy. What in the world does that word mean within the Cope household??? It means 4 kids and a momma all on her own with some help from some wonderful friends and family... And it also means that we are getting ready for something very special...


Someone very near and dear to my heart is coming home... Can you guess who that is?!

If you guessed Shawn then you are very right!!!!!

We cannot wait and are very excited and BUSY!!!!!!! Yay!!!!!!

Dear Epilepsy,

You annoy me. You annoy me so much it brings my mood down. You annoy me so much that everytime you decide to do your annoying thing it brings me very very close to tears. And feel free to dissapear at any point and time

Sincerely,
An annoyed parent.

Michelle had her Neurology appointment yesterday. That was annoying. I love her new Neurologist. Im glad we got away from the other one. He may be the director of the department but her annoys me. So much so that I have made a very good point in telling him (my mouth gets me into a lot of trouble at times).

On Sunday we were sitting quietly on the couch watching football (well Michelle was mommy was yelling at the tv hehe:) ) and Michelle started grunting and just staring at the tv. I got no response from her. Her breathing got very fast and she just sat there and grunted. When she started arching her back and the grunting got worst thats when I knew what she was doing. That was annoying.

So of course yesterday when we were at the appointment she did it.. Again. That was annoying. Of course the doctor has a few different ideas for us. Those are also annoying.

Idea #1- Wait and see.. (like I said annoying.)

Idea#2- Wait and see what she does but also run an EEG and depending on what it says start Topamax. He also went on to say that if her seizures were caused by her Hydrocephalus (10% of Hydrocephalus patients suffer from seizures when their shunts fail) that the medication would do nothing for her and we would basically be giving her a pointless medication. Again ANNOYING.

Idea # 3- Give her the medicine NOW and see if it helps her headaches and also do the other 2 ideas while were at it.

Here's my idea....

DON'T give her a medication that in the long term can leave her with some pretty nasty side effects. Not to mention that it may not even work! The last 5 medications havent worked.

Do the EEG and see if its definite seizure activity and then talk about a DIFFERENT approach to the medication stand.

Do continue with the Tylenol and Motrin for her headaches and if they DONT go away look for a different headache medication. If you can't tell im slightly against the topamax.

Michelle doesn't seem to be suffering from anything at this point. The mood swings are still there. The tiredness is still there. The im going to be a complete pain in your you know what is still there. So here I sit. More annoyed then I was Sunday.

Turning into frustration...

Thursday was a bad day for me. To find out that someone hurt my daughter, intentional or not, was and still is completely heart breaking. I made a ton of phone calls Friday morning. Including an early morning phone call to our pediatrician only to be advised to bring her in ASAP since she didn't sleep very well the night prior..

We went and saw one of the on call docs and he checked her out from head to toe. Making sure to pay extra attention to all 3 of her shunts. We were asked to hold off on the imaging seeing as how Michelle has had A LOT of x-rays in her small little life. He said lets see if her symptoms get worst and if they do head straight to the ER in San Diego and we will have a physicians referall waiting for you and you wont wait.

The doctor called in the physicians referall and talked to the attending who knows Michelle very well who actually called us Saturday morning to check on her. Which was fantastic. We didn't have to go to the ER at all. Im thinking that she was just a little sore and that it has worked itself out.

Im trying as hard as I can to keep my cool with the school and the school district. The nurse informed me that Michelle was never taken to her office and that had she been she never would have been put on the bus. They would have asked me to come up there ASAP. Which is the protocol that we set in stone from her first IEP meeting.

It's frustrating because I want to go somewhere with this situation and I feel like im still stuck on Thursday. It doesn't help matters that 3 of the kiddos have all had a stomach bug and decided to share it with me today. Yay me :(

First soccer game

So not only am I sunburnt from todays soccer games but im exhausted.

James's team did a fantastic job. Excellent sportsmanship and all. Even when they figured out that they had won the game 6-2 'Green Bombers'.

James is a natural. Im talking like his coach kicked him a ball and has managed to impress us all. He needs help in certain areas but my goodness. I absolutely loved watching him out on the field today.

Shawn's team played today too. It's cute watching a bunch of 5 year olds run around trying to play. Im sure as time goes on they will all get better. I can tell Shawn isn't as big of a soccer fanatic as James is but in time he may prove me wrong.  They dont keep score and we have no refs but it was still fun to watch.

Keeping busy

Don't mind if I do. With our day to day normal activities we have thrown soccer practice into the mix for both of the boys.

Monday and Wednsday is for Shawn and Tuesday and Thursday is for James. It makes for a very interesting week. Abigail thinks it's great and so does Michelle but after 30 minutes they are both done and ready to go home. Makes me wonder what this weekends game is going to be like.

Michelle is doing fantastic in school. I have been working with her at home on recognizing her alphabet (she can sign the song just fine) and she loves her 'abc time' as she calls it.

Abigail thinks that it is fun too so she joins in for about 2 minutes and then she is done.

I am hoping with all the hustle and bustle that it will help make the next two months go by pretty fast. It's not like I don't have plenty to do already but I am a firm believer that children who excel in sports or music do better in school and life. I played softball all the way through high school (and I have the scars to prove it). I played the saxiphone (sp?) for 5 years and got better grades while doing both of those things then I could have ever imagined. Not to mention being involved in drama, choir, AFJROTC, drill team and a few more. I hope my kids enjoy it just as much as I did and still do.

A story about a neighbor...

I have some pretty awesome neighbors. And then I have some pretty insane ones I stay away from. See on base our houses are conected to another house. So we are very close to each other all the time. Makes it pretty hard when we have noisy days. But it almost makes it a little bit easier to make nice with each other when you live that close together.

So everyday the bus picks Michelle up in front of my house. And everyday when I turn around to walk back inside there is this cute little girl and boy looking out the window at me. If the window is open I go and say hi if I have the time. The other day I was talking to the kids and the mom and noticed the mom really panicked when the little girl smacked the boy on the head. She told her not to do that because she could hurt his owie. I asked her if he had fallen or something and she said (and as calm as could be) no he has a shunt.

I said like a VP shunt? He has Hydrocephalus?! She said yea. I was in shock. Here I am living on this base for almost 4 years and I have only ever met other Hydrocephalus patients in the Neurosurgery clinic and I have one as a neighbor now. He is two, he walks, he talks, he plays and his is as adorable as can be. Of course me and the parents have hit it off wonderfully. They want to know everything about Michelle and I want to know everything about them. He has never had a revision and Michelle has had over 20. Sort of a bummer for me and slightly scary for them.

I had to share that though. It's nice to know your not alone. And this condition is a scary one. On a good note Michelle has started to return to her baseline. Not yet all the way there but she is getting there. And we have an appointment next month to see her Neurologist!

I had that moment...

Only when I get completely frustrated with everything and everyone do I have these moments. Here lately it seems like they are coming more often. Maybe because im pretty irritated that Michelle's doctors who have gone to YEARS of medical school have sort of just given up on trying to figure out whats up until she gets worst. So basically I feel like a really mean grizzly bear fresh out of hibernation trapped in a cage and they ae not giving me food.<- best analogy I could come up with.

I am watching her, and everyday she has a new or worsening symptom. Today's symptom... barely eating. But since she is still tolerating her g-tube feedings there isnt much I can do as of yet. Basically they are waiting for the sign that the pressures are increased before they do anything. At this point if they admitted just to monitor (idea was brought up by the NS Nurse Practitioner) her that sounds better then them doing nothing. But then again flu season is starting around here and I can't bear to have all my babies sick if she does go in. So for now we wait.

Waiting is annoying. And as annoying as it is I completely understand it. I have been scouring the internet for some sort of answer. Something, anything. An explanation of just normal 4 year old behavior would be fantastic but no, the doctors say this is not anywhere near normal behavior for even a child with no medical issues. And were back to annoying.