Hospital stay...

Here we are, finally Noah is having his 2 day EEG done at Swedish hospital. I was sick to my stomach all night, couldn't sleep well, then when I finally got into my deep sleep Joshua woke up, 45 minutes before the alarm. Aah such is life! I am so physically and emotionally exhausted that I think last night seemed much worse than it was. As i shared earlier my brother got married this weekend, that combined with our normal church activities and our fathers day softball game has definitely worn me out! We got here at 8:30 this morning, ( our check in time was 9am, we were just a bit early) but they got us in right away. Our room is just perfect, on the 9th floor with a great view of downtown Seattle. Actually I have never been to this side of town before, maybe after we leave here in a few days we can explore a little. I am hoping that the worst part is over for my little guy, He screamed the entire time that the tech was putting the dozens of wires on his head, seriously, the entire time. In all it was about an hour long process... now we are just in entertainment mode. i brought all of Noah's favorite toys ( except his Mr. Potato Head which we lost at my brothers wedding. I am dreading telling Noah, its his favorite) I went to the dollar store and bought a few " presents" for him, he has already opened them and is having a great time playing with the off brand play doh, surprise, it is holding up very well! Micah and Joshua are here with us too but they will be going home tonight. I am praying that Joshua has a good night with Micah, I am never really away from him at night. I will post some pictures of my precious boy a little later! Thank you all for our prayers, I can definitely feel them. The holy spirit has been such a comfort today, and HE put a song in my heart that is ministering to me... "Glory in the Highest" This is one of my favorites lately, I am reminded that my God is so much bigger than this, and yet he still cares about my seemingly trivial worries.

Noah and his seizures

I was very surprised to get a call last week from Swedish Pediatric Neuroscience... we had an appointment scheduled with them for the middle of June, anyway They were wanting to see Noah that week! I was totally unprepared, I thought we had over a month till we were going to be there for our second opinion! Originally our appointment was scheduled after Noah had an EEG at the hospital, I was so upset about the EEG because our previous experience was so awful! It had been 2 years since and I certainly didn't want to re-live that experience with my son! The doctor wanted to see Noah even without having the EEG, ( we could schedule that after...)

So off we went, we dropped Joshua off with Aunt Cammie and baby Matthew and made the trek to downtown Seattle. It is so unnerving, going to a place for the first time, how do we get there?where do we park? Do we have to pay to park? what if were late? Anyway we got there in plenty of time, checked in, and I actually spoke to the man who made our appointment, it was great to know that the man who called to schedule Noah's appointment was the same man who answers all of the phones, and will no doubt answer when I call with a question/concern, or when Noah has another seizure. Our appointment was wonderful, all of our questions were answered and then some! We were listened to, and I truly felt that our doctor understood Noah. We will be going to the hospital for a 2 day EEG... ugh... 2 days!!!!! How on earth does that work with a 3 year old, oh and by the way I am still nursing Joshua so this will be interesting! Micah will have to be with us for most of the time during the day, I suppose it will be another adventure for us. Noah's doctor suspects that Noah is still having seizures, that we just aren't seeing them. I actually think that this is very possible. There are many times when I watch Noah and he does some weird movement, or stares off for just a few seconds and I think, man that looks like a seizure, but he cant be having seizure activity, he is on medication! But maybe he is... So i guess this EEG is a good idea, just overwhelming to me. After the EEG our doctor will determine the best way to help Noah, regardless of what the EEG reveals, Noah's medicine will be changed! Praise the Lord! his new medication has virtually no side effects, and wont cause any harm to his liver, which his medication he is on now has been known to do. The transition will take 6 months of gradually weaning him onto the new and off of the old, for several months he will be on double the amount of meds... I don't really know what that will look like, praying that the EEG will be the hardest part of this. Sorry, this is mostly my heart and thoughts that have been just swimming around in my head for days that I am finally putting into words, not a very interesting or fun post, I will have one of those soon. Thank you for your prayers! I am so excited for what the Lord has in store for my sweet boy, obviously I pray that the seizures will go away, but even if they don't God loves him even more than i do. He knows our every trial, and every tear we shed, such a comfort.

It's finally Friday!

As I mentioned in my earlier post my son Noah has a seizure disorder. He has been on medication for about a year and a half and for the most part it has successfully prevented seizures. In October Noah had the first seizure in over a year. It was horrible and lasted longer than any I had seen him have. We called an ambulance because he wasn't breathing and he had been playing in a garage with his friends Micah and Samuel when it happened so we weren't sure if he hit his head or not. On the ambulance ride he did all sorts of things that I hadn't seen before after a seizure, I was terrified, I couldn't understand why he was having a seizure! He was medicated! Why wasn't the medicine working?! We went home after hours in the emergency room. Noah was just fine but I was a mess! We saw Noah's Dr at childrens and he determined that although the medication Noah was taking for the past year had been working, it was now not enough to help his growing body. We decided to up his dosage. Since then we have been noticing some things in Noah that are just not right. He cant focus in school, he seems to suddenly get a burst of energy and he has to run around or do something, he is fine one minute and the next he bursts into tears if you look at him funny, he will sit awake in his bed for HOURS before finally falling asleep. I decided to call his Dr and share my concerns about Noah's behavior, thinking it was probably related to the new dosage of medication. After over a week of phone tag I was finally able to speak with a nurse about my concerns. She was very kind and assured me that my concerns were probably valid, it is so hard to know what is normal 3 year old behavior and what is a side effect of medication! Anyway after talking to the Dr we found a discrepancy in Noah's prescription, we had been giving him the wrong dosage, the prescription was written for him to take over 2x the amount we had been giving him, but the Dr had spoken totally different amounts to us. The instructions we were given on Thursday was to up his dosage again, not to the amount that was prescribed but more than we had been giving him... that's it. I felt like the wind had been knocked out of my sails. My concerns were valid until they discovered the discrepancy in his meds... then they just brushed me aside, like they were saying, " just give him more meds, that will help"

So that is where we are at, I am hoping that our appointment in April will have much better results than this phone call. I pray daily that God will protect my precious boy and that he will guide the doctors as they make decisions that will help him. I never want to live through another seizure again.

and then Friday came...

I have been saving for months and finally Friday I was able to go buy a brand new camera. I have loved taking pictures for as long as I can remember. As a teenager I would take pictures at every church event, take pictures of my friends, my dog, basically everything I could think of. I couldn't wait to go to the store the day my pictures would be ready and pick up the developed film. I would tare into the envelope before I even got to the car just to see all of the fun memories that were captured inside. My passion for photography has only grown since then, but with a family and financial responsibilities that come with it I haven't been able to keep up with the new technology... until now! It has been so much fun playing with all of the settings, and learning how to use this new camera! I am giddy! I think my husband is very happy and now he doesn't have to listen to me go on and on about " if only I had a new camera, then I could take pictures like that!" What a blessing this camera will be to our family! Thank you to all of my friends who have put up with me and my constant talk about this camera! Say cheese!

Here are some pictures I found on an old memory card

This is JR and Abbey. Jr was a customer of mine at Starbucks for many years. He always called me, " the dancer" after the Lindy hop. His wife had passed away a few years ago, so he and sweet pea ( his Pomeranian) would spend their days wandering the grocery store and our Starbucks. What a sweet man. He Loved the Lord and often said that he couldn't wait to go home!

My Gram and Pop. I think this was taken at my brothers graduation party in 2006. They live out of state and I look forward to seeing them again soon!

My sisters, Amy, Cammie, Julie, and Kacy. Actually they are all my sisters in law but I love them like my very own sisters. This was taken before Michele entered our lives, now there are 6 of us!

This is of my mom and Grandmother shortly after Noah was born in 2007. What a proud mimi!