Chase's follow up meeting for the 48hour EEG was this morning...
As I settled in with my mom and the kids to hear the news, our doctor started off saying that he was surprised by the findings.
I thought to myself 'oh no, he is having hundreds of seizures a day, and I don't even know it.' But that was not the case. In the span of those 48 hours, there were
The doctor said that he had never seen someone that has had a Grand Mal seizure, then have a few small seizures on the first EEG, that did not have some type of Epileptic condition. And that Chase still has a 50/50 chance of having something later on.
He said that because of the results, Chase looks completely normal, and that he is not going to give him medicine for something he does not have.
Thank you Jesus.
We still need to have keep watch for any other seizure symptoms, call if there is ever anything 'strange' going on that we might think would be a seizure. And we need to take precaution and not allow him to do anything alone or take baths alone in case a seizure would ever happen at that time.
The doctor said that if Chase reaches the end of high school and has never experienced another episode that it would be the first time ever that a child, with Chases seizure history so far, would just stop having the condition. But he gave room to say that it is not out of the realm of possibility, he just has never seen it.
The over all impression that I had was that this doctor, who is probably in his 60's and very experienced in his profession, has never seen a case like this.
Thank you God.
And thank you to all the family and friends out there that have been praying for us during this time of stress and a world of unknowns. Prayers, above and beyond hope, have been answered.
I went into the appointment ready to cry at the news, and take home a hefty medical prescription that I would somehow have to force down my little guys throat probably every day (I don't know that for sure, this is only what was in my head). And I walked out with the sense of a huge burden being lifted (my worry and stress) and being in almost shock and outright awe at the results. I can only think that this is a small miracle God has done with Chase. I was so worried about the medications, the long term and short term effects of that medication, the long and short term effects of what having seizures would do to his self image and confidence. And then to sit there and be told that NOTHING would be done, because there was no evidence that anything was really wrong with Chase...
I walked in there with little hope and a lot of worry, and praise my God who takes each sorrow and worry to heart, walked out of there with a renewed sense of awe at what a wonderful, amazing, God we have. I wasn't even asking for a miracle, just a comfort for the things we would likely endure... and God answered us with something better than we even dared to hope.
(it was a Saturday) I started feeling contractions that started to become fairly consistent by late afternoon.
I was calm though, because Jeff had just gotten home from his internship in Chicago on Friday (leaving early) night after a first scare of very consistent contractions Thursday night till Friday afternoon. As soon as he was on the plane, my contractions slowed :).
My mom was still in town, so she watched Chase while we went out that morning to spend a little more time together before the baby came. That afternoon I continued working on a nursing cover for a friend's baby shower that was happening on Sunday that I had put off until the last minute... I had been thinking, if I am not TOTALLY prepared, the baby will just not be able to come!... flawed thinking, I must say, oh well, I was pregnant, and I really wanted to go to that baby shower.
Throughout that afternoon and evening my contractions went from inconsistent to VERY consistent and I started timing them.... in the first hour they were already 3 minutes apart and about 45sec in duration... SERIOUSLY!?! But they were not very strong so I kept track of them for another few hours, they stayed pretty consistent. At about 9pm I told Jeff what was going on, and we decided to call the Midwife Center just to make sure things were going alright since we had a very different experience with Chase's labor (my water spontaneously broke before any contractions were felt). So I really didn't know what to expect from a 'normal' labor.
We called our midwife Anne and she had us come in to get checked out. Anne told us that she thought I would have the baby by Sunday, and that I shouldn't call back until I couldn't talk through the contractions. The first contraction I had while in the car was much more significant than all the previous... figures. We got home at 10:30pm and I tried to go to bed.
After a fitful time sleeping, I finally started to time the contractions again at about 2:30am when the became stronger. We called the midwife asap because Chase's labor was so quick, and were asked to meet at the Birthing Center in 45 min... I wondered to myself, 'so long?' But after packing up the car, and getting ready to go between contractions, it took us that long to get the the Center that was only 9 blocks away. The nurse met us at the door, and the midwife was only minutes behind us.
We got there at 3:15...
Ami was born at 4:25am.
Happy Birthday Baby Girl!
We celebrate you today, the wonderful girl you are. Smiles, deep giggle, 4 teeth, playful nature and dancing queen! We have had a special year getting to know the little person you are and are looking forward to the next seeing the little girl you are becoming.
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.
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 :(
-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!
-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!
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.
The last few months have flown by in a whirl wind! Ami's 6th, 7th and 8th month birthdays have come and gone without me posting anything about it. It makes me a bit sad. I got photos from month 6 and 7, but only have a few days left of month 8 to get an 'official' photo before it is too late. It just always seems like the days I actually get her dressed up I either can't find my camera or she poops up her back or we have to go to the new house to meet up with workmen and I can't sit down for a photo shoot.... ahh well, so goes life. Forgive me baby girl if you feel slighted when you are older for not having an 8th month photo taken on time.
Happy Easter/8months baby girl!
Here you are at the new house, jumping in your little activity center... not as fun as the Johnny Jumper at Grandma's house, but still a fun way to contain you! :) hehe
This month we celebrated cousin Samuel's 4th birthday... in his own words on that day: "I'm four now, I know things." :) We played at the park, and then went back to their house to hang out, have pizza, little smokey's sausages and ice cream cake... as per request by the birthday boy :)
Here the boys are, making footprints in the sandbox.
My uncle Larry and his family came down to help us on the house. Larry and my cousin Hunter (the giant in the kid house) worked on building us a 'deck' in the garage to give us a better entrance into the house. Katy helped a TON by watching Chase and Ami... and I am pretty sure they both think she is their best friend now. :)
Here they are with my new-to-us garage sale find! Perfect for the new back yard and the upcoming years of having little kids playing in our yard :). I am looking forward to finding some great garage sale finds for the new house! YAY!
Chase's vocabulary is growing every day! He somehow picked up 'butt' at some point in the past few weeks and loves to say it and giggle... not sure if my explanation that it means the same thing as his bottom has sunk in. He also says 'Dvdv' for a DVD :). It is pretty cute. 'Mountain' for fountain and a ton of other things that I just can't recall right now.
Ami has only been crawling for a week but she is totally making it around the house now! She made a complete lap around the family room, behind chairs and everything, and around the kitchen table once in about a half hour this afternoon... now this is with tons of exploration and playing with things she finds along the way, so she is really starting to move now... and finding the outlets, YIKES!
Ami is getting more and more interactive and just LOVES to play little games. Pat-a-cake, peek-a-boo and any type of made up little thing that gives her attention :)
Here is one that she started initiating a few weeks ago...
Chase wanted to brush his teeth, I said ok since I thought it is fine to delay a bit for a good habit... then after reading a book and getting tucked in, he looks up to me and said 'Thank Jesus.'
This is the first time he has initiated praying before bedtime (we usually do prayers before nighttime and meals, not nap time) :)
So I start our prayers as usual and then asked him, what would you like to thank Jesus for?
He said "Volcano," with a smile.
So I thanked Jesus for volcanoes, and asked if there was anything else he would like to thank Jesus for...
"T-Rex!" He said with another smile :)
So we thanked Jesus for T-Rexes, and I asked again if there was anything else he would like to thank Jesus for...
and he said "mmm....Dinosaurs." Nodding his head.
So we thanked Jesus for all the wonderful Dinosaurs he created that are so interesting to learn about. And then I asked again, if he would like to thank Jesus for anything else...
"umm.... Books" pointing to the Curious George book we had just read.
Thats my boy! Loving the books :) So we thanked Jesus for fun books to read, and all the words and letters and pictures inside that make books what they are. And as we closed the prayer he said a very tired, but very emphatic sounding, 'Amen!'
I stroked his hair and sang the song I have been singing to him since he was born, and we blew kisses at each other until I turned the corner and couldn't see him anymore.