Absence

So at the diagnosis today we did not get the 'all clear' from the Pediatric Neurologist as we had hoped. Chase has been having Absence Seizures, which we have not been aware of.

They caught two small seizures during the EEG testing. I believe the Neurologist said they both happened while he was still awake while I was reading him a story. I had noticed him fluttering his eyelids, but I had just thought he was blinking hard trying to stay awake for the story... little did I know I was witnessing one of his seizures. Now that I know this, I realize he has done it before... I just didn't know. (how did I not know?!?)

Absence is one of the most common types of epilepsy in kids, and does no damage to the brain (thank goodness!).... most patients grow out of it by their mid-teens. It is often overlooked because it just looks like the child is daydreaming. It is genetic. While the Dr was giving examples of situations, they completely resonated with me... being in the middle of a class and then 'all the sudden' having the teacher talk about something else, and being confused. 'All the sudden' noticing the kids around you had their books open to a specific page and realizing that yours is still shut and not knowing what you were supposed to be doing. I remember feeling this exact type of confusion as a child in class. Either I really was just day dreaming, had ADD, or just maybe, I was also having Absence seizures and no one was aware of them.... If I did, I must have been one of those people that have grown out of them because I have not had any type of situation like that since high school.

Some kids have only a few seizures, while others might have hundreds per day... scary huh?

To figure out where Chase stands, we are going to be doing a 'take home' two day EEG test. Chase will have the electrodes on his head hooked up to a 'backpack' that he will have to wear constantly for two days. We will also have to constantly video record him during those two days. The camera is on a 3-5ft cord that will need to be positioned so that his eyes can be seen by the video at all times... so that they can see how often he has a seizure as well as measure the brainwaves. There is also a button that the parent/adult can push when the think the child might be zoning out or having a seizure, or even just a strange behavior and it will show up on the readings. Chase is going to need constant supervision. This will be interesting.

We are going to try to have this test done the first weekend in August... which will also be when we celebrate Ami's first birthday. So for the photos, Chase is going to be in that mummy hat again with a funky backpack... that should be an interesting one for the photo album :(.

On the bright side of things, medication has been proven to cure this type of seizure. In Chase's case, the Dr says that about 1-2 years on medication should completely cure him of the seizures and he will be fine for the rest of his life. Side effects might be liver toxicity, but probably not to the levels that would actually hurt him. I guess I am just glad that we know SOMETHING now, and are not just sitting here wondering what is going on. And I am also thankful that this type of seizure 1) doesn't hurt his brain 2) is cureable and 3) that he really is still a healthy kid and will not have a loss of quality of life.

We will just have to take precautions with him, like not letting him swim alone, bike ride alone, climb high places (this will be a tough one), and basically not allow him to be in situations where he could be hurt if he 'spaces out.' But thankfully, this should only be for a few years, not his entire life. So for that, I am especially thankful. But for my baby boy, I just wish I could take it for him and not let him have to go through this. Hopefully he won't remember most of this, because we caught it while he was still young.

Thank you friends and family for all your thoughts and prayers through all of this craziness for the last month. They have sustained us, given us courage and hope in this time of 'unknown' and stress. We rest in the knowledge that God is our creator and knows every sorrow no matter how small... and that in all situations, brings love and hope that sustains us.

http://en.wikipedia.org/wiki/Absence_seizure

Overwhelmed

I have been feeling slightly overwhelmed lately. So I apologize to those of you who actually read this and wonder where I have been. :) There has just been so much going on that sitting down to write it out seems like a gigantic chore... and I don't need any more 'chores' around here.

The main deterrent, in my mind, is that I don't have easy access to my photos! Which is super frustrating to me, since I am so visual I rely on photos to tell my story, not my words. My desktop is having issues with the new wireless router we have, grr. Then, last week after finally locating my card reader from the move, I realized that it was broken! So there is no easy way for me to transfer photos to the desktop or the laptop (the one that actually works on the internet). I have photos in my camera from March that I haven't shared, or edited, or even gone through! I feel like I am falling so far behind in this area :(

May:

-Ami pulled herself up for the first time in early May!

-Moving and unpacking boxes in May, workmen, painters, carpet all happening before that. Oh yeah, and the moving company 'lost' one of our crates initially, but found it and sent it out to us a week after the main move in day.

-We visited a fantastic friend of mine, my college roommate, for a baby shower celebrating her first baby! YAY friends!

-Jeff officially graduated from Tepper with his MBA, and was the only one to wear shorts during the ceremony, you could see the flash of red shorts as he walked across the stage... whoops! But on the good side, he did not pass out from the heat like others were about to.

-My cousins visited and we went garage sale-ing all weekend, I got a BUNCH of great kid toys all for under $100!

June:

-Visited my friend again who is pregnant, just to spend some quality time with her before she has a baby and gets busy with life :) It really was great just to spend time talking and hanging out and getting things ready for baby to come!

-In other news, I turned 30... I know right? 30 feels weird to say.

-Father's day we went on a family bike ride, and I survived! We really didn't go far, but it was nice to do a fun activity as a family.

Then, as some of you who are on Facebook might know, Chase had a seizure three weeks ago. It was the scariest thing that has happened to me since having the kids. We still don't know 'why' it happened, initial ER tests came back normal, blood work on a 2 1/2 year old should be avoided at all costs FYI. Chase actually sat very well for the CAT scan though, and was acting more like himself about 3 hours after it happened. The ER Doc said Chase had an ear infection and was put on Amoxicillin. We have an EEG scheduled to check out his brain next week to make sure he doesn't have any type of Epileptic condition.

Then after the scare of that wore off a bit, 6 days later, he spiked a 102 temp, we were told his ear infection was back, asked how many ear infections this would make... I said this was his first one, and got a strange look. Upped the drugs to a more powerful one and were sent home. A day and a half later Chase broke out in a rash all over his face, legs and arms. We went BACK in to the Peditrician's office, and he got diagnosed with the Hand, Foot, Mouth virus and told not to be around other kids... which was G-R-E-A-T since we already had wonderful company in town with their two kids... FANTASTIC. Welcome to the plague friends!

Luckily our friends were pretty cool about it, considering their kids ended up catching it :( Bad fever for their boy, and slight rashes for both those kiddos... now don't I feel like worlds worst host in the world :( But the quality time we were able to spend together on the worlds longest play date was so amazing!

July:

We celebrated the 4th of July weekend with our friends from out of town and my parents. I feel so blessed to have such a wonderful country where we have the freedoms we do. To marry who we wish, to blog our thoughts as we wish, to travel as we wish. Thank you to all those who have served our country and for the families of those who have served. Those people and their family have sacrificed so much for us... Thank you.

Jeff and I celebrated our 5 year anniversary with our friends, my parents and all the kids. Eating crab from the shell, and grilling out on our brand new grill. It was our first 'party' at our house, and the fact that we were casually celebrating the fact that 5 years ago, about 5 miles from our new house we were married. And look how much has happened since then, and how much stronger we are as a couple, and how blessed we are to have two healthy kids. Jeff went all out and got me presents, and even researched that the traditional 5 year anniversary gift is wood. So he searched all over to get me a square wooden bowl.. LOVE IT. And then even went so far as to get me a Bonsai tree! He claims he has no recollection of me saying that I love Bonsai trees and have always wanted one, but it must have stuck in there somewhere, because now I have a gorgeous little tree on my counter :) I seriously need to learn how to care for it though, since it is dropping leaves every day, but I think that might just be from the transplant in to the cool hand made bowl it is planted in... Jeff hand picked the bowl for me too :)

Then last weekend we spent some quality time with old friends from Western Illinois, some of my brother's friends that I knew and got to hang out with in college that now have families, and one of my sisters best friends from college who knows this group of people and also has a family. These people have been getting together for at least three years now, that I know of, every summer at my parents place to catch up. And last year I got to attend since we were living with my parents, and then this year we got a formal invite ;) 11 kids, 12 adults and lots of fun was had last weekend.

As I am sitting here writing, there is just so much to tell and not enough time to write it down... and probably too much information that would bore most people that read this. But here is a little more break down:

Ami is crawling F-A-S-T, and I mean booking it! She could walk if she wanted to, but does not feel steady when she lets go of things and sits to the floor. She will do almost anything to be held, played with and loved on... but will squirm like the dickens to get out of a diaper change, or outfit change... which is why she is just in diapers a lot ;) Ami will eat ANYTHING I put in front of her! She just loves to eat! :) I gave her pieces of homemade organic chicken today and she had two chicken tenders and probably would have eaten more if I had given it to her. At least one of my two kids is a good eater... this certainly will make life a bit easier, and diversify our fridge items! She has this deep belly laugh, but then will screech like a pterodactyl.. not kidding. Ami finally got her two bottom teeth about a month ago. And when she gives her big, squinty-eyed, smile she shows off those two little teeth and a LOT of gums. I just have to get a photo of it before she changes again :) She is 11 months now, oh my... how did she get this old? My baby will be 1 year old in less than a month, and I haven't started planning a party... poor second child. :( But I will make sure she has a yummy smash cake to dive in to... which I imagine she will, the way she likes food.

Chase is acting 100% himself, you would never know he had a seizure. He loves to run, jump off things, climb things and throw things. We have been working on 'learning letters' this past week and he really gets interested now, we will spend about 20min on it before he gets distracted and wants to play something else, which really is a good amount of time for him. We have got most the shapes and colors down for him, but numbers and letters are still a bit confusing. He does often ask, 'What dis say, Mama?' when he notices that a package, book or sign will have writing. His vocabulary is growing every day, and it seems like he keeps dropping those babyish words all the time. I miss how he used to say 'Doing-o?' for 'What are you doing?' and other little things, I try not to correct his speech because I want to hear those cute things for as long as possible... he is growing up too fast. Chase will turn 3 in September... where did the yearS(!!!) go?

Oh well, enough of my writing, this is going on forever. At least I was able to get down most of what has been happening these last few months, and with that I feel better... since I consider this my 'journal' and don't keep a hard copy one, it is like I am allowing myself to forget unless I write these things down.