Life goes on

Well here it is already the middle of October, the leaves are changing colors, and We still don't really know what is in store for us with Jacob. We did hear from the Doctors in Seattle (sort of), but they did not tell us much more than they told us when we were there. They still think that Jacob's best option is surgery (a left hemispherectomy to be a bit more exact), but they would like to see more results from genetics testing (which we went in for a few months ago but the genetics lab would not do the tests due to their idea it was useless- we are letting the doctors duke it out with them). They feel if Jacob does not have the surgery the bad part of his brain (left side) will eventually destroy the good part (right side). They feel he will get to a point where his development will plateau or he will start to regress. Drugs have so far not made a huge impact, so our options there are becoming limited, so surgery is looking to be the most effective method to get control of his seizures and keep his development on track. It is not however without risks.

Good news (I think) is that we are coming off of another medication to see how Jacob will do. I am glad we are taking another one off his schedule, but I also hope it does not wreak havoc on him with many more seizures. So far, so good. We are still hoping to get more information about the conference that they did about Jacob, but who knows when that will be, so we just take things day by day.

(I call this one OMG)

We did have our family pictures taken last week by a photographer friend of mine Kim Mitchell, who also took our photos last year. I told her I would be happy to work a trade, so I am hoping I can return the favor soon and do her family photos. She got some great photos (as usual) and I am greatly appreciative. We will be sending out our Christmas cards with one or some of the images when it is time.

This weekend we spent doing chores and trying to get lost at the corn maze here in Meridian. Josh and Jacob had a great time trying to find our way around and Josh sliding and bouncing on all of the things they have there to do. We even tried to lose Rick and Jacob once, but they found us.

Back from Seattle

Well it has taken me until now to make a post about our trip because I was not sure exactly what to say yet (and I am still trying to figure it out).
We flew out Saturday 9-11 (of all the days to pick to leave on a plane), and both boys did very well on the flight. Jacob slept most of the flight and Josh looked out the window and asked a lot of questions. Our only little issue was when we were towards the end of the flight and the flight crew was preparing everything for landing and Jacob decided to gag on a small piece of pretzel I gave him and then proceed to throw up some of what he had eaten. The flight attendant was very good about helping me get things cleaned up very quickly and even hanging tea bags around us to prevent the smell from further affecting others on the plane. Of course he was able to do all of this before we landed on the ground. We arrived in Seattle around 3:30 pm Pacific time and then had to wait about an hour for our rental car details to get worked out, but we finally made it to West Seattle to Pat and Tom's house where we were greeted with wonderful food and great company. Liz, Gary, Pat and Tom are the greatest hosts! Sunday we hung out, relaxed, and went to the Sunday street market to look around and get some local berries, bread and such, and Josh spent lots of time playing with his Seattle friend Milo (who lives next door).
Monday we went to Seattle Children's Hospital, where they checked Jacob in and put on all of the leads for his overnight EEG. We then got to just hang out and wait for the seizures for the rest of the day. The nurses there were great at taking care of him and coming in and describing all of Jacobs seizure for the video so the doctors could better evaluate them later. My only complaint was that we did not get much sleep because it was noisy and they came in at midnight and woke him up just to take his blood pressure.

Tuesday he had the first MRI followed by a functional MRI and then they released him when he was awake from the anesthesia and able to eat and drink a bit. He did not like the hair do he was given and was very happy to leave!

Wednesday we came back and had a couple of appointments with the Neurosurgeon and the doctor we had seen before and he had another eye exam (his eyes are great). The doctors were very good at answering all of our questions and believe Jacob may be a good candidate for Surgery. All of the seizure activity is on the left side of his brain, and they think he may have already switched many of his functions to the right side that normally would be controlled on the left, but that they will revue all of the EEG and MRI data and give us more information in a couple of weeks. If they did surgery though, they thought it should be done in about 3 months or so. All in all, they gave us a lot of information to think about and will let us know what their recommendations are and what kind of options we have soon.

We made it back though and while Josh had a bit of trouble getting back into the routine of school (decided he hated school and wanted a couple more days off), we are getting settled again and just taking things day by day.

They grow up so fast

It was a nice labor day weekend in Boise, and we had a full weekend of balloons, huckleberries and Bronco football!

We started out our weekend by getting up early Saturday morning and going down to the Spirit of Boise Balloon Classic. We got there just in time to see all of the balloons lifting off the ground and we even got to go right up and get close to them. It was amazing to watch them all and we had a great time, even if we did have to wake a couple of boys up early (we were able to bribe them with donuts though).

After that we piled into the truck and went up in search of the elusive huckleberry, along with my sister Erin and her son Charlie. We found a pretty good patch of them, but this year the huckleberries are pretty small and not quite as plentiful as last year (but they were sweeter), so it took us a bit longer to get enough for some pancakes and milkshakes.

Sunday was a day of yard work and just hanging around the house (and of course huckleberry pancakes). While Rick worked on the yard, Josh decided to build his own version of a roller coaster, but of course he needed a rider, so Jacob got to fill that duty. Jacob did not mind trying it out, but I had to make sure the roller coaster did not go too fast.
Monday, we got ready to watch the much talked about BSU Broncos in their game against Virginia Tech. We invited some friends and family over, and while there were a few nervous moments in the second half, BSU pulled it off in the end and won 33 to 30.

But today it is the start of a new day, and with that it is also the start of Josh's first day of preschool at Eagle Montessori. He was excited to go, but a bit nervous once he got there. I think he will have a great time though. I am sure he will come home with many new friends. He is only going half days right now, but he says if he likes it he wants us to put him in the full day program (we will give him a month or so to decide though).

We are also getting ready for the next trip to Seattle. We will leave on Saturday and will come back Wednesday evening. I am anxious to see what more they can tell us about Jacob's seizures and the possibility of some kind of long term solution. While he seems to be having a few less seizures, and seems to be in a bit of a better mood over all, he is still having more than I would like to see him have. So I don't know if I like the risks the new medicine brings with the amount of (little) good it is doing. I will update next week on Thursday, after we are back, I promise (so check back then)!

August, where did you go?

Well, I promised to be better at getting the posts up quicker, but what can I say? First I had no Internet for almost a whole week, then we went on vacation, then the doctors appointments, OK enough excuses.
We have had a pretty good month, we started out the end of July with a visit from Rick's sister Michelle and his nephew Dayton. We took them fishing and to the Snake River Stampede among other things and had a great time.

We then headed over to the Oregon Coast with Rick's mom Connie, and our friends Kevin, Angie, and Laney, for a week of vacation and to get out of the hot weather here in Boise (of course it cooled down when we left and warmed back up when we got back). It was a bit chilly and grey there, but we caught lots of crab, collected agates, relaxed and of course visited the Tillimook cheese factory for ice cream.

Rick, Josh, Jacob and I also took a day to head down to the Newport aquarium and stopped at Yaquina Head lighthouse, where we actually saw the sun for a little while.

Finally on our last day there the sun decided to make an appearance, (and we actually even put our shorts on). We went down and made sand castles on the beach (except Jacob decided to just eat the sand instead) and went over to the Cape Meares lighthouse and one last trip of crabbing.

All in all we had a great time, except that Jacob started the new medicine the doctors wanted him to get his eyes checked out for, so he was a bit grumpy and tired for the first few days of our trip. Now we are back home and settled in and getting ready for our trip to Seattle for more testing on Jacob. He is doing all right, the new medicine seems to be helping, but the seizures are not gone. They just raised the dose, so we have had another few days of being tired and cranky, but hopefully they can give us more ideas when we are in Seattle.

Right before we left for the coast though, Josh learned how to ride his bike without training wheels. He was very proud and excited, so we went out and bought him a new bike (he was getting a bit big for his old one anyway).

Now that August is gone, we are getting ready for a long weekend of doing some Huckleberry picking, and whatever else comes along. Hope everyone else has a great Labor day weekend!

Finally starting to walk

I took the boys for a haircut last week and Joshua decided he wanted to make his hair orange. I don't know what this is going to mean when he gets older? What other things do I have to look forward to? At least this washed out. Jacob still does not like getting his hair cut. He will hold still for the most part, but still cries through the whole thing (but when it is all done he looks at himself in the mirror, smiles, and seems to say "you are one handsome guy!").

Jacob has finally decided to do more of the 2 legged moving. He is doing more and more practicing every day and is finally walking longer stretches. He is so much more calculated at it then Josh was. Josh just got up and started going. Jacob takes his time and decides exactly were to put his feet.

We had a good weekend and My sister Erin and I celebrated our birthday on Saturday the family. Rick grilled us up some steaks and they even had a little suprise just for Erin and I of some crab legs (YUM!) It was awesome! I wouldn't mind still celebrating the day every year, but if there was just a way to stop the counting part, I think I would be happy. Oh well, this at least was not one of the big ones (next year :0).

Some news and fun stuff

I am first going to say, I am sorry for not getting to this sooner. I don't know where the time has gone. We have had some beautiful weather here as I hope most everyone has, although it has been hot, but I like hot. So we have done the best we can at being out doors and enjoying things like water.

A couple of weekends ago we decided to go pick some cherries in Emmett. We called my sister and her son Charlie and they went too. We had a great time, but of course got carried away with the picking ("As soon as we fill the last bucket, we will go"), so 67 lbs later we had our Cherries.
Jacob was not as keen on the picking part, but was fairly content to relax and nap in the chair. We are still working on those cherries, and I need to get around to freezing some before they all go bad.


We are also lucky enough to have a big park about a mile away from our house that has lots to do and even has water features. Joshua loves running and playing in the water (except for the ones that dump on your head), but Jacob is not so sure about them all yet. He would rather do his splashing in the bath tub.

But when we want to stick close to home we set up the Wilkison Water Park in the back yard with the water slide and slip and slide (not pictured). Josh and Charlie think up new ways every time to slide down and get cooled off.

As for what news we have, it is not much yet. For the most part, they want more tests. Seattle Childrens Hospital has called and set up another visit for September 13, 14, and 15 for a variety of things including an overnight MRI, and a functional MRI, along with the Neuropsycological testing and a few other things they have packed into those 3 days. The biggest news is that they want Jacob to get his eyes checked because the area in his brain where the seizures are coming from is near the vision center. They want to see if he is having any vision problems now, because they have a medicine that they want ot try him on, but it has a risk of causing vision problems. They don't want to put him on it if he is already having issues and they want to further evaluate what the risk of doing surgery would be to his vision. So we have that set up here in August along with some neuropsycological testing here in Boise in a couple of weeks. That is all I have for now. I will do my best to update any new news as soon as we get it and try to update at least once a week! Have a beautiful week!

We did

Whirlwind Trip

I know I promised to update this as soon as we got back from Seattle, but I am sorry, I did not get to it until now (still recovering I think).

We drove to Seattle Tuesday for Jacob's appointment that was scheduled for Wednesday at 6:40am. It was an uneventful drive, but of course with any drive when you have kids, it took at least 2 to 3 hours longer than it is supposed to. We got to Seattle and luckily had our very great friends Liz and Gary waiting for us with food, beds, and (most importantly) drink ready to go.

We did not get to bed as early as we should have for our early appointment and wouldn't you know it, Jacob decided we needed to get up at 3:30 in order to be at our appointment on time.


We got to the hospital and the glued all of the EEG leads to the top of Jacobs head so they could monitor him all morning and throughout the PET scan. It was a lot of hurry up.. and wait, which made for an exhausting day. He is a little trooper though, and did not complain nearly as much as I wanted to. After they finished the scan and he woke up form the anesthesia, we had just about enough time to go and meet Liz, Gary and Josh (who was being entertained by them while we were at the hospital -thank goodness) for lunch. We needed that break especially since Jacob, Rick my Mom, and myself had not eaten much at all that day and all realized we were very hungry for Ivars fish and chips! We also got to go and see the troll under the bridge in Fremont before heading back to the Hospital to meet with Dr. Novotny, the director of the Epilepsy Program. He had not had much time to review the PET scan, but did show us some of the test and told us that Pediatric Neurologists, neurosurgical residents, fellows, attending and researchers would be getting together in the next couple of weeks to go over all of his testing (MRI, PET, EEG, etc.) and come up with the best ways to approach treatment for Jacob. He will be going back at least one more time for some neuropsycological testing to determine development and to see how much of a candidate he is for surgery to remove the troublesome area in his brain. So for now it is more waiting to find out what they think and when they want him back (possibly in July?).

Meanwhile Josh was out having a great time seeing the sight of Seattle with Liz and Gary. We hear he even got to ride in the front seat next to the monorail driver and to honk the horn of the Train. He also went to see the Space Needle and to Pike Place Market to watch them throw around some big fish. He had a great time and we are so grateful to Liz and Gary for taking care of him so well. He would have hated being in the hospital with us and all of that waiting (I know Jacob and I would have preferred to be on the tour of Seattle).


So there you have it for now. Hope all is well with all of our friends and family! Love to all!